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The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

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2012 Medical Updates Jan-June



Friday, 6 July, 2012 3:00 PM.

We're back from the hospital. I'm happy to report that the protein test was satisfactory, so the Avastin infusion could go ahead. It did so in a very routine way, which is exactly what I was hoping for.

I feel sleepy now and will soon be asleep.


Thursday, 5 July 2012 9:34 AM.

Look at that time! Such a frustrating sleep pattern I'm in. Awake at 4, deep in thoughts till 6, asleep then till 9. I'd like just to sleep through the night and get up at 8. Oh well. When I sleep, I sleep, and not everyone does.

I think it's Jupiter where the gravity is many times more than Earth. I'm waking feeling like the bed has been transferred there. I just don't want to move, not a muscle. I'm warm and comfortable, but lifeless.

It will be better when the weather warms up, unless other circumstances change everything. We'll see how I feel after my hit tomorrow....

I can't complain.


Wednesday, 4 July 2012 11:36 AM.

It's the two-year anniversary of our wedding today. Daughters arrived safely from Melbourne.

I had a small seizure at lunch time yesterday. They have been coming at 2 week intervals so it was no surprise. If I get away with that and not a full-on one, I'll be happy. Also, any changes to routine tend to tip things over the edge.

It's only a few days till the next Avastin, which is just as well [that it's not far away]. I can feel the clock slowing down before the next battery top-up – just as long as the protein count is satisfactory and it can go ahead. This is always a matter of some anxiety, because if it goes up again into the danger zone, it's very unlikely to go down again. All bets are off in that case – but let's cross that bridge when we come to it.


Tuesday, 3 July 2012 9:21 AM.

All seems to be OK. I have a slightly sore throat and runny rose, but that may be temporary. If I'm not very active on my blog in the next week, blame my daughters, as they should arrive within the next hour.

Treat no news as good news for a week at least.


Sunday, 1 July 2012 9:00 AM.

It's been a week of more positives than negatives, though how to gauge these things I'm not really sure. My back seems better sometimes and then shows no improvement, but it's not gone backwards. We went for a walk around the block in the cold breeze yesterday and I feel virtuous for having done that. I may be able to pick it up a bit through the week.

I have had few head pains and am sleeping fairly well, though with a very irregular sleeping pattern.

The girls come tomorrow for a week [No – Tuesday! I just had a brain-fry]. We look forward to that. They're in for some cold weather.

On the negative side, balance remains the issue as the right knee seems to become less reliable. I also seem to have developed over time a swallowing issue that comes and goes; the feeling in particular that the pills I've taken remain lodged in my throat. And here was I giving people advice on how to swallow pills in an older posting. [I have no difficulty swallowing them; just that 15 minutes after, the feeling they are there comes, and can stay for hours.]

My appetite remains good – maybe too good at times. I have the next Avastin infusion on Friday providing the kidneys show proper function with the pre-Avastin check. I see no reason at this stage why they won't be OK.

Hello, Part 2 of 2 of 2012. Maybe this should have been a monthly and half-yearly report as well. The latter is easy enough. I'm still here.


Saturday, 30 June 2012 10:08 AM.

I'll do a weekly update tomorrow, its being Sunday and all, so won't write much here. As I've said before, no updates means things are trundling along as best they can.


Wednesday, 27 June 2012 8:09 AM.

The oncologist visit yesterday went much as predicted. Mainly I am providing him with information; there's nothing he can do apart from tweaking of medications balance to alter the fundamentals. He is happy that I've been able to cope with the ups and downs of the past month as well as I have, and feels that it's unlikely there will be any reason to interrupt the Avastin treatment for the time being at least.

That's really why we visit him; to reassure him on top of the data from Oncology at the hospital that Avastin treatment can continue as the best option – because without his signature on the document to the suppliers of the drug, no more will be forthcoming.

He has given us an MRI authority for another brain scan and I will have one on 19 July, if nothing interferes with the plan before then. As it's over a year since the last one, it's time to see exactly what's going on in there; in particular, if the tumour is spreading, and if so in what direction.

We can't ignore the fact that although I am holding my own in some ways, something is causing the serious decline in walking ability that was going on long before I had the fall that did the back damage almost a month ago. There are also some other symptoms that can be accounted for only by changes in brain function; e.g., intermittent difficulty in swallowing.

Yesterday on one of the social network sites I made a fairly flippant remark about how well the oncologist said I was looking under the circumstances. I was a little surprised [but really shouldn't have been, as the message was somewhat ambiguous] at how many people assumed from this that everything was rosy.

I know people are expressing their hopes and wishes in the absence of knowing the full story, but it reminds me how easy it is to give a false impression of the reality.


Tuesday, 26 June 2012 5:45 AM.

We have an appointment with the oncologist today. We'll ask for an MRI referral and have that done when an appointment time in Tamworth becomes available. After a year or more since the last MRI it's time to look again and see where we stand.

While things had been going along with what I'd describe as a gradual physical decline, but with other symptoms not changing very much, there wasn't a lot of point in an MRI. I've been ambivalent about it for a long time. But physical change has accelerated recently.

It may be that the fall and spinal fracture on 31 May have increased the rate even further because of the hole it put in the walking programme and the delay it caused in receiving the last Avastin infusion. I can't say what part they've played in the current rate of decline, but I do know that the ability to maintain balance while on my feet has declined rapidly, especially over the past few days.

Walking unaided is a critical quality of life issue. At the moment I can with much care walk to the bathroom and do all that needs to be done there. I can walk to the kitchen, make tea, and get to any other part of the house. Tracey of course is in a constant state of anxiety that I don't make any mistakes and fall again, or [as happened when I fell before] that a seizure doesn't catch me standing in no-man's-land unable to walk. But without that physical independence I lose much of what is important to me.

So it's time to find out exactly how things are appearing in my brain.

The morning I've woken early and my back feels good, after the initial period of stiffness and soreness. I  must be careful not to sit too long in the one spot [like here at this desk]. It's easy to forget how much time is slipping by when you're having fun!

Comments 23-30 June 2012

Bob LakeJune 27, 2012 9:05 AM

Denis, I never cease to be amazed at what people can live with. I quote you:" ... how well the oncologist said I was looking under the circumstances. I was surprised at how many people assumed from this that everything was rosy."

To many men in World War 1, living for years in the trenches, with the mud, blood and death all around them, became some sort of 'norm'. They eventually accepted it and learned to appreciate the (very) small occasional blessings.

Then I read, recently, an article by a photo-journalist of families in third world countries who are born, live, breed and eventually die on rubbish tips. One beautiful and healthy little girl, scavenging among the rubbish for the ultimate prize (an unpeeled banana), asked the photographer: "Why do you westerners always look so unhappy?"

I am not suggesting that it is possible for you to regard your situation as in any way acceptable. Your cheerfulness, objectivity, courage and normalcy, however, remind me of that little girl.
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    Denis WrightJune 28, 2012 10:04 AM

    Thanks, Bob. It's always been the paradox, hasn't it? The more people have, the more they feel they have to worry about it. How often is the journey more satisfying than arriving at the destination?

    What always sustains me is the love and care of those around me; thoughtfulness that, in that other paradox, fills me with an overwhelming guilt at what my illness constantly imposes on them in every way.

    There's a blog entry in that, because I know full well that such a feeling is pointless and undeserved. But it's always there.

    There's no winning post for anyone, especially Tracey. Just the marathon that goes on. It's not easy to be ever-cheerful about that, I'm afraid, and it doesn't get any better with time.
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AnonymousJune 27, 2012 6:34 PM

When the alternative is being dead,it's amazing how good almost any scenario looks. I am not taking away any pleasure and admiration at Denis's attitude, from which I always hope I'll learn - but just sayin'. In the book 'The Line of Beauty", a Booker Prize winner by Alan Hollinghurst, I was most affected by the final page, where the protagonist, realising he probably has AIDS from which several of his friends have recently died,is leaving the house where he has resided and looks at the street corner. He is struck by its beauty.He realises it is beautiful in its very ordinariness.

Julie xx
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    Denis WrightJune 28, 2012 10:17 AM

    'Almost' seems the operative qualifier. I don't know this book, but it seems very powerful. I know exactly what he means. Ordinariness has a beauty that I could never have understood if I weren't seeing it from this vantage point – the inside. I wish that vantage point on no-one. Life should be lived mostly in the way yesterday I felt little awareness of back pain for the first time in a month. Not an issue but neither to be ignored.

    Thanks, Julie. Very insightful - but then you've had to stare death down too, and right now you're dealing with it on your mother's behalf as well. You've been on the inside.


Sunday, 24 June 2012 8:33 AM.

The waterpipes are frozen, so my face is dirty. You just have to put up with it.

It's been a calm week. Each morning I wake and feel my back hasn't really healed much, but by the time I do some exercises and loosen up the sore muscles, the aches and pains wear off quite a bit. The red spots are returning to my arms which I guess indicates the Avastin is doing its thing where it needs to. My head is fairly clear. Walking remains the biggest issue and the most dangerous thing I can do unassisted without great care. I think I must do more of it.

Strangely it seems a ridiculously long time since the last Avastin shot not much more than a week ago. I don't quite get that, as the days are flying by just as crazily. Another week and we are into the second half of the year; but the days are lengthening.

I feel better for having increased the Dilantin dosage to get the level up into the safe zone. I wonder if its being too low was the reason I had that series of smaller seizures last week just before the Avastin infusion. I was putting it down to the delay in Avastin treatment, but it may have also been related to low Dilantin levels.

These are always our problems. We have so many variables that when one thing happens outside the norm, it could be just one or a combination, or none of the ones we think about.


Thursday, 21 June 2012  9:50 AM.

I've nothing to report, really, except that I woke too early – but I did write a nice story.


Tuesday, 19 June 2012 8:45 AM.

It's a foggy morning so should be a sunny day. There's nothing to report of any particular interest on the medical side except that my back continues to improve gradually while my capacity to walk without taking great care every step declines. Perhaps I can improve the latter as the back strengthens. Meanwhile, I take the hospital advice and do what I can to keep the rest of my physical being in order.


Monday, 18 June 2012 2:00 PM. 

I'm taking it quietly on a cold morning.There's nothing much to report except one interesting correlation. The ankle/foot swelling began to return as soon as I had the Avastin injection. It is not much and few people would [yet] notice, but it reminds me of the complexity of the body chemistry involved with Avastin side effects, which the literature says may produce both bleeding and clotting. All the more reason why the Clexane's containment of clots is likely to be so vital in my case, and the need to continue it at the present comparatively high level. 

[I had said more on Avastin side-effects in regard to clotting when I first made this entry, but as Tracey and I were discussing this later, it became clear that what I said was open to misinterpretation, so rather than confuse the issue for others, I've deleted some of what I said. After all, I'm not the medical specialist, just the guinea-pig with more than a passing interest in what the drugs I take do to me.]


Sunday, 17 June 2012 8:02 AM.

Saturday's update contains most of the week's doings, so I'll leave it here and move on. Things seem to be stable, though my walking is noticeably poorer and I continue to take care with every step, knowing the disaster that awaits another fall. I am making a conscious effort now to stand straight, as I find that after the injury I revert to a slightly bowed back and slumping posture. So I am practising simple standing tall and stretching. Gently. There is still quite some back pain to resolve - muscles to mend and the vertebra fracture to heal.

In other respects I am comfortable enough. My reasoning still seems to be functioning OK and I am not too erratic. There's no further feeling that seizures are on their way. I suspect the Avastin and the slowly increasing Dilantin levels have  put a brake on that.


Saturday, 16 June 2012 8:31 AM.

I was rather shocked to find I hadn't updated this yesterday after returning from Avastin infusion, but had written a number of individual notes to people and thought I'd written here.

In brief, the Avastin shot went well. Protein levels in urine above a trace are measured by the test the hospital uses as from 1 to 4. After the spine fracture the level, which had never risen above a trace, registered 3 - much too high to safely administer Avastin. After the week's drama, the Oncologist thought that because a full 24 hour urine test showed improved protein levels [i.e., lower], the best option was to give the Avastin infusion; less danger in the longer term than not doing so.

Yesterday's hospital test pre-Avastin indicated a level of 1 - not the best result, but much better than the prohibitive 3 the week before. So everything went ahead, much to my relief.

Whether it's imagination or fact, I feel much better this morning, though my back is still sorer than it should be.

We discovered in the blood test I did a few days ago that my Dilantin level was 25. This is much too low, safe levels regarded as between 40 and 80. Levels lower and higher than the 40-80 zone increase the risk of seizures. We have discovered through the years of experience that down round 40 is best for me. Anything over 50 seems to have produced more seizures in the past, and we've been very good at keeping it between 40 and 50.

Thus we've increased the daily Dilantin dose to build up the level. It changes only slowly and it is dangerous to go overboard with the dosage as it seems to build exponentially. That is, it could be 50 one day and with a relatively small increase in dosage can go in a few days to 55, then the same number of days later to 70, then 90, and then 130. Too high is more upsetting to my system than too low.

This 25 level may help explain why the last round of seizures was a series of relatively small but persisting ones going on over hours. I suspect improving Dilantin levels plus the Avastin infusion will make a big difference.


Friday, 15 June 2012 8:37 AM.

I slept reasonably well, in spite of a series of seizures beginning about 8.30 pm and going on for a couple of hours. Each seizure was not large but left me with the unpleasant feeling that it was not over for the night. At about 10.30 pm I felt that they were finished and so it turned out. They haven't returned, but I feel very tired.

This is a different type of seizure from 'normal' and I suspect indicates what life is likely to without Avastin. I now have a good deal less mobility in the right leg in walking, and have to be very careful with every step, but given time, I can get about.

It reinforces the necessity for Avastin after ten days delay; or a least, that its hoped-for effect will kick in quickly - providing, I have to say, that nothing prevents the infusion from occurring this morning.

On the other side, it must be remembered that seizures have been happening at roughly two-week intervals. The last of course was the one that caused the fall. So to have a seizure is not surprising. What is different, as I said, is the type. I'd rather have one good one and get it over with than a series where you don't know what's coming next, except that something is.

Adjustments to anti-seizure drugs are always possible, but we have been anxious to preserve what has been a delicate but fairly stable balance in drugs for the past two years. We'll discuss the options with the Oncologist in our next appointment in about ten days, or sooner if required.

So, I'll sign out until after the morning's adventure at Oncology.

COMMENTS AND REPLIES

AnonymousJune 17, 2012 9:12 AM

Best birthday present I could have! (self centred as always)

Julie xx
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    Denis WrightJune 17, 2012 6:24 PM

    Ha ha. Very self-centered of you! I know we wished you happy birthday before but I do so again, with this charming thought - you have now entered your seventh decade on the planet. [This means you must be very wise....]
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AnonymousJune 18, 2012 7:26 PM

I read your blog of twelve months ago and happy to read today that you are still with us. Keep going, your words are inspiring
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    Denis WrightJune 19, 2012 10:33 PM

    Thank you for the kind words. If it does some good then I am happy about that.
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JoanJune 19, 2012 9:18 AM

Walking with a back injury is nearly impossible at the best of times. No doubt much of your difficulty in walking can be attributed to this, plus the anxiety of falling again. Time for all of us to be patient.
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    Denis WrightJune 20, 2012 11:21 AM

    True. Which is why I'm spending some time standing straight and doing the exercises, fairly gently, to promote better posture.
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AnonymousJune 20, 2012 2:22 PM

Hi Denis

Been following your ups and downs; and I'm really very sorry about that duck - hope it had a suitable burial. I'm paying you the great compliment of taking you at your word(s) in linking to an article the subject of which I greatly identified with at the time of my wife's illness.

The link reference probably says it all, but I had to smile when I read the very first comment attaching to the actual article. Anyway, hope you're going ok, and hope this is not too intrusive:

http://www.guardian.co.uk/lifeandstyle/2012/apr/18/10-things-not-say-when-ill

kvd
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TraceyJune 20, 2012 3:25 PM

kvd: I love this article. I can't tell you how many times we have heard all of these statements. I feel pretty much the same way about every single one of them.

There are also the people that I bump into who don't actually visit but say to me 'I really want to come and see Denis' which is a variation on the 'I must see you' theme.

What I'd really like to say to them is 'Well, they've had two and a half years so far' and when it has been many years since he saw them 'If you visit, who are you doing it for, Denis or yourself?'

Tracey
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AnonymousJune 20, 2012 3:59 PM

Thank you Tracey (White Queen? Such a lovely description)

I did worry my reference would not be appropriate, but I do very much admire Himself's straightforward approach - to ducks, as well as other equally important stuff.

kvd
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AnonymousJune 20, 2012 5:04 PM

Sorry Denis, Tracey.

I did not realise that link was 'variable' in how it was accessed. The 'very first comment' I referred to said something like "11. Doctors? What do they know? You really must meet my homeopath".

And now I must shut up.

kvd
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    Denis WrightJune 20, 2012 7:11 PM

    Oh bravo! to you for finding this article - it's brilliant even though I have varying degrees of acceptance of the points. It's worth a separate blog post because I do want to say where I vary - not entirely disagree - with the writer - Deborah Orr.

    Having said that, there are two very important sentences in her last paragraph. To me, they are critical. Burn these into your brain:

    If you recognise things that you have said or done yourself within this list, don't feel bad about it, at all. I most certainly have, and I've said and done much, much worse too; it took being on the receiving end before I realised what it could feel like.

    The reason? I know for a fact that I have done at least some of them myself before I became ill. And there are some I stillwould say to certain people because we understand each other too well not to be able to.
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TraceyJune 20, 2012 6:44 PM

My favourite to date has been the book on the merits of drinking/eating bovine cartilage...:-)
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DRKWJune 20, 2012 10:17 PM

Friends with Cancer? 14 Things Not to Say | HealthGoesStrong http://shar.es/oPvuD

...and now
Hope you enjoy the distraction:

Eastern Folk Music (Played by Dennis for the accordion): http://youtu.be/LFb8KB-gMpw

via @youtube
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    Denis WrightJune 21, 2012 2:36 PM

    Thanks for those. The 14 things are shockers, aren't they? I'm going to grab those [duly acknowledged of course] to add to my reactions to Deborah Orr's list. Most of those on her list were just faux pas. These 14 are entirely off the scale of thoughtlessness, ignorance and/or arrogance.

    Thanks also for the entertainment. You have to supply a troupe of swirling, brightly-clad dancers in the next effort!



Wednesday, 13 June 2012  3.40 PM

Avastin to go ahead Friday. It's a calculated risk based on a better [not great] 24hr test result, but we agree with the Oncologist on it.

11:08 AM.

Nope. Nothing from Oncology yet. We know no more than yesterday. Have we contacted them? Yes. The Administrator is unavailable at the moment. I speculate that they are trying to contact my Sydney based oncologist for advice and haven't been able to, but that's just a guess.


Tuesday, 12 June 2012

6.00 PM.

The results of the kidney test are not yet available, so it's not possible to pass on any news. The likely outcome in the short term is that we will know the score on the test some time in the morning. What happens then depends on that.
So... we wait.

8:42 AM.

The 24 hr test has been completed and Tracey is delivering the goods to the  hospital. I have done all I can [in every way!] to provide them with an impressive specimen.

On the down side I've woken each morning feeling as if someone has been giving me a good punch in the kidney area, but it is impossible to know the exact cause of that, so I probably shouldn't speculate.

Nothing else medical really matters at this point. I do notice that the skin on my arms has improved as a result of the extended period away from Avastin. The sinister side of that healthy aspect of cell growth is that the ones in my brain I don't want to have a similar advantage will be benefiting in the same way – from the defence against their growth being taken away.

We wait till late afternoon, at least, for the test result.


Monday, 11 June 2012 9:55 AM.

The 24 hours kidney test began at 8 am, so now I sit quietly, eat bland foods, drink hot water, and rest.

Absolutely none of these should make any difference really, but they do to the way I feel about it and give me the illusion of a degree of control over what happens.

I bear in mind that on those freezing days and nights before the last test; the one that failed, the difficulty and pain of getting up and the danger of falling again in the bathroom was such that I deliberately restricted my intake of fluid.

If that severe restriction of fluid intake made a difference last time in some way, then you may be sure that it won't be a factor this time.


Sunday, 10 June 2012 9:17 AM.

I've decided to leave the story of the past week or so trailing this entry, in case people who aren't frequents visitors want to know what is going on. But in brief, I had a fall 10 days ago that resulted in a compressed fracture of the spine. Avastin infusion last Tuesday was postponed till the results of x-rays came through. These x-rays indicated the risk of having the infusion was small enough to go ahead with it last Friday. But a urine test just before infusion showed high protein levels and the infusion was abandoned because it posed too high a risk to the kidneys.

A full 24 hour urine test will begin tomorrow morning. The result of that test will decide whether or not Avastin will be administered on Wednesday.

The whole Avastin programme hinges on this result, so it is a critical time for me. We do not know the extent to which the fall and spine fracture contributed to the abnormal protein count, but the 24 hour test should give an indication.

So it's sit tight and wait time, with no falling over!


Saturday, 9 June 2012 9:07 AM.

Clear and calm after last night's earth tremors, by Jove! Maybe the ruler of the underworld was complaining about the -4°C minimum to come this morning. He prefers things a bit hotter. Here it felt like the Jolly Green Giant had his fist around our house and was giving it a pretty good rattle.

I continue to turn over in my mind, as you would expect, the prospect of an adverse result for the protein test we'll start on Monday. This is simply being realistic in view of the fact that we have known all along the day would come when the count would begin to rise. That having been said, I won't indulge in consequences before the results come through.

The section of my back affected continues to heal slowly, and I can do things with a little more ease of movement. This matter, which loomed so large a week ago, seems almost insignificant right now. I do have to watch out for likely increase in number and severity of seizures, headaches etc, and not trying to do too much would seem like a good idea.


Friday, 8 June 2012 3:00 PM.

Each time I go for an Avastin infusion, I have to give a urine sample minutes before. The purpose is to test for raised protein levels.

There are traces of protein in most people's urine, and mine has up to now been normal. Today the reading showed a triple plus result, indicating a significant increase in the protein level.

Proteinuria is a condition where there is an abnormal amount of protein in the urine, and it is a side-effect of Avastin.

Given this turn of events, the Administrator at Oncology rang our Oncologist. The bottom line is that they could not treat me with Avastin today, due to the risk to my kidneys.

I will do a 24 hour urine collection starting on Monday morning.

We would start sooner but the long weekend holiday on Monday has put a bit of a spanner in the works. Results from the urine collection will be known on Tuesday afternoon. Avastin orders must be placed by around 11 am on any given day, so it will be too late that day.

If the protein levels have dropped to an acceptable level, the soonest they can order the Avastin is on Wednesday. It will arrive and be infused on Thursday.

The Oncologist said that my fall, with its unpleasant consequences, may have stirred things up, but we have no way of knowing at the moment if the rise in protein level will be temporary or not.

So it will be a rather anxious period, but we will as usual go with the flow of information, and deal with each thing as we have what we need to act [or not act.]

I'll write more a bit later on how I intend to approach this over the next few days. There's no point in speculating beyond that, apart from saying that this may well be the watershed event we knew would come.


Thursday, 7 June 2012 8:01 AM.

The last couple of days have been a fog. I had in my mind last night that today would be Friday, but Tracey reminded me it was going to be Thursday. But I woke thinking it would be Friday and we'd be off to Avastin later in the morning, had pills and cereal, sat down here and remembered it was Thursday after all, so I have a day more to recover.

The good news is that amongst the aches and pains I can feel small but significant signs of recovery. Greater ease of movement, even a tiny bit, can make a difference to comfort lying, ability to walk, and a huge psychological boost. Right now after some very gentle arm exercise to keep much-needed strength up there, and standing and sitting for more than an hour, I have that 'My back is killing me' feeling, but when you expect it and know why you have it, it makes a big difference.

I'll lie down again soon. The day will be a series of ups and downs that way, but everything I can do to speed recovery I will. I'm just content to be making progress. Up top, no headaches, no fuzziness, and my ankles are Twiggy-slim. It seems that popping a few vertebrae is Nature's way of telling you to lie down.


Wednesday, 6 June 2012 9:34 AM.

OK. The bad news is I have a compression fracture of the spine. This doesn't surprise me as there has been no improvement in the week since it happened, and anything else would be likely to have improved. Also any position other than prone sees a gradual increase in pain as pressure downwards has its impact on the broken vertebrae.

We see the doctor later this morning so we'll see what he advises. Of course as that variation on Murphy's Law decrees, my regular GP is in the UK.

The better news is that, now they know it is a spinal fracture, I can have the Avastin infusion this Friday. This I believe is the best of available options and the one with the least risk. So its UseBy date/time of Fri 1 pm [yes, it's that unstable] means that $6000 of Avastin won't be thrown out but can be used.

It's a relief to know what it is as we know what to expect and the right treatment under the circumstances. Now I've got to lie down as the pressure's intensifying.

Bloody drama queen....

[Watsons, you're angels. You know why.]


Tuesday, 5 June 2012 9.45 PM.

X-rays were taken today for which we don't yet have results. Until we do and they show no evidence of anything that the infusion of Avastin will endanger, the infusion's been postponed.

This is complicated and I won't try to explain the delicate balance between the action of the tumour, Avastin, Clexane, clots and bruised tissue elsewhere in the body, but the bottom line is that if the x-rays show the current level of tissue damage is low enough, the next Avastin infusion is on Wednesday next week.

In that week risk levels in other ways [seizures etc] will rise so it's going to be a very quiet time.


Tuesday, 5 June 2012  12.36 PM.

About to do Avastin at Oncology and have a check with a doctor of the back situation, which has gone backwards.

It's sleeting and almost snowing here - lovely day to be out and about. First challenge will be our three steps to the garden path. This whole thing may take some time. At least I found a sweet lying spot and was able to sleep an hour or so this morning.


Monday, 4 June 2012  6:21 AM.

An early start as sleep is far away, but I am getting a little more mobility and confidence in walking unassisted for a few steps, as long as something to hold on to is never far away. I've learned how to compensate a bit for lower body weakness by making best use of arms where possible. All those door-frame pushups have paid off when it comes to leaning down to the faucet and taking the weight with upper body, hands on the basin.

Still a long way to go before I can confidently say I'm back where I was, but if nothing else this has shown me with blinding clarity just how quickly things can change, and most importantly though depressingly, how much help I need when the going gets tough. In those circumstances the whole care picture changes. It's something you think you understand until faced with some harsh truths.

A bit of recalibrating required.


Sunday, 3 June 2012  7:18 AM. 

A week that would have been best scrubbed off the diary, but there's no rewind button. The bathroom fall is taking some time to heal, and last night was only marginally better than the previous two, though I did get a couple of hours' sleep. The pain is about the same level and inconvenience as it was yesterday. I realise that my body is not that of a 40 year old and with the ravages of chemotherapy can't be expected to heal at the same rate as a couple of decades ago, but I still get impatient with it. 

I realise also that I have to focus on each every step I take now - and look for handholds as I move around a room if Tracey isn't nearby. Every step. Another fall, particularly with my back in its current condition, would have critically serious consequences. 

I am aware that I can't exercise because of the shafts of pain that run up my back when I move in many ways. But it's not the pain that is as important as what the whole episode has done to my life. To get to the bathroom and back to bed leaves me puffing as if I'd walked up our steepest hill. I can't rely on the right foot to move when I expect it to, and I really can't expect Tracey and Christian to be at my beck and call 24 hours a day. They need rest as well, especially Tracey. I can manage, but I have to be careful in the simplest tasks – and there's always the danger of another seizure that will catch me in no-mans-land. A lot of this didn't matter a few days ago. 

The main thing is to be careful and to hope that the back problem is sorted as soon as possible. Then I may be able to do a bit of reconstruction in all sorts of ways – physical and mental.


Saturday, 2 June 2012  6:30 PM.

Quick update: As happened yesterday, I found things improved over the day a little after a long sleep. I am hoping that unlike yesterday, this improvement remains. I am happy that after losing 90% of strength in the right leg overnight [making it very difficult to lift the foot at all], I have regained some strength in it after sleeping. I hope for a better night tonight and some mending of the back tissues through the night.

Saturday, 2 June 2012  7:50 AM.

Apart from the first night after brain surgery on 17 December 2009, the last two days have been the worst in my life.

On Thursday night, 6 pm, I was standing in the bathroom towelling off after a shower when I felt the sudden onset of a seizure. Usually I would dash for a chair or the bed and ride it out there, but for some crazy reason I thought this one would be over quickly and I'd simply stand there till it passed.

Huge mistake. This one turned out to be much bigger than I expected, going down the right side of the neck, into the hip, knee and ankle. I had no control over the leg so I couldn't move it even if I tried, and I collapsed against the bathroom wall to the floor, and squashed an electric heater [which, let me say, was not the bar type but pumped air out from the top.]

I ended up on the right side of my rump on the floor, and being paralysed on that side I could not move from that position. Tracey came running in. Christian was at SES, so with much effort and ingenuity, Tracey got me on a low chair long enough for me to get some strength back, and finally we got some clothes on me and I went to bed.

The worst damage was/is to my back, and it's very painful. It's the same sort of pain chronic back pain sufferers get, though theirs may well be worse. For me, the complication is that I can barely lift either leg, especially the right. Sitting in a chair is painful, and to try to move in bed is very difficult. Consequently, I now have great difficulty walking, and every step has to be taken with extreme care.

Yesterday I thought it was improving, and it did for a couple of hours, which relieved me a lot, but sadly all the worst features have returned, and with the pain comes nausea. Fortunately, I didn't strike my head on the way down to the floor. We've had someone in to check things over.

Two nights without sleep in unpleasant, as many know, and I have to go back to bed now and see if that has a positive effect as it seemed to yesterday.

I am pretty shocked at how far this has set me back. The seizure has had other effects, but that's enough whining for now.


Comments and Replies 31 May 6-June

JoanMay 31, 2012 10:05 AM

As soon as I get over this cold, I'll be there. I don't feel too bad, but Carl says I'm running a fever, so I think I'll just enjoy a day of delirium and not try to make deathless art.

As for the m/w, it's not the wheat I'm worried about, it's the body waiting in front of the m/w that concerns me. Often I feel very fortunate that we live such a spartan lifestyle, with very little radiation other than what comes from the surrounding granite boulders. But then, tomorrow I could discover a lump somewhere, so who knows? People got cancer before we discovered electricity. I was brought up breathing in 24D, DDT, Dieldrin, Aldrin, 245T, etc. etc. The day reckoning will come.
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    Denis WrightJune 3, 2012 8:11 AM

    Me too with the ag poisons. We knew to be careful, but not that careful. And there were no such things as disposable rubber gloves, so the contact by hand with poisons particularly for dipping cattle to keep the ticks down was very frequent.
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JoanJune 1, 2012 10:54 AM

It's a very slight cold and probably won't kill you, but actually I'm taking the opportunity to be a lazy slob and just sit by the fire and read. I think I caught it before it caught me, but I still wouldn't want anyone else to get it lest it turn into a monster inside someone else's body.

The agricultural chemicals were something I ate for breakfast. My father used to manufacture them long before the days when they were declared poisonous and any precautions were taken either by the manufacturer or the farmer.

My poor mother tried to grow house plants, but they turned into twisted, tortured, deformed, and dwarfed freaks. Imagine what that was doing to the rest of us.

Fortunately, I was 5 years old by the time that started, so wasn't exposed in the womb. The insecticides are designed to hit the central nervous systems of very small creatures, and at some point in our lives, we are all very small creatures. I wonder how much this exposure in the womb has to do with autism, hyperactivity, ADHD and other nervous disorders for which we currently medicate very young children.
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    Denis WrightJune 3, 2012 8:30 AM

    DDT fixed everything. [Humans can be thoughtless about such preparations.] But it was an age where some of the great preventive discoveries were made, and I'm afraid the baby-boomers turned out to be the unknowing guinea-pigs for wild over-use of excellent drugs.

    I have to pick you up on the 'cold' issue. The slightest cold in an otherwise healthy person is is little problem for them, but for those in my circumstances, there's no 'slight'. My body can't defend itself in the way everyone else's can.

    It is a bit like flu and the way it ravaged Aboriginal communities when whites came here. An inconvenience for whites, death for indigines.

    That may look over-dramatic, but not from this side of the table [especially now, with my back as it is. Just sneezing, which I've done a few times since Thursday, is agony.] I've been appreciative of your and other people's high degree of caution in the past.
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JoanJune 2, 2012 11:19 AM

Oh dear!! That's no good. You won't be reading this as you are in bed with a sore back and a sore everything. You WILL get over this. A fall is bad enough without Brian hanging around. It took me two weeks to get over falling off the roof, and like you, fortunately nothing was broken. Our ageing bodies don't bounce anymore and we must be very careful not to drop them. Thank the goddess the heater wasn't a bar heater.

I'll be watching the blog for your return to your study. Pain killers are always nearby in our house.

I hope you feel well enough to enjoy your kindle.

Lots of love,
Joan
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    Denis WrightJune 3, 2012 8:42 AM

    Yes, very glad nothing was broken - it could so easily have happened. I guess I could have electrocuted myself quite effectively if I'd smashed to heater up a bit more!

    I can do periods on the computer, which is good as it drives me mad lying in bed. The Kindle is a help.

    As to the painkillers, that's another thing that I'd be playing with fire to experiment with. I am very limited in what I can take without upsetting the Avastin and Clexane [and Keppra, and Dilantin!] regimes. Another reason not to get any sort of cough or cold.

    Speaking of which, it's time for a Weetbix, a few blueberries and my drug cocktail!
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LenaJune 2, 2012 12:27 PM

I knew about the fall almost at once Den. and I read your entry and feel very sad about your pain & inability to move as freely. I know you wouldn't say "Oh F...K IT' But I would. Sending you love and all that white light s..t.

Nothing I can do, but know you that I would if I could.
Lena XXXX
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    Denis WrightJune 3, 2012 8:45 AM

    Thanks, Lena. If I thought the expletives would help I'd be joining in the chorus. :) Your kind thoughts make a difference.
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AnonymousJune 3, 2012 12:43 PM

Oh dear, so sorry to hear this. Will you go to a physio pronto on Monday, or a chiropractor -that could make an immediate difference. Hope you do get all the help you can so that you can use your energies to fight back the seizure damage rather than the fall damage (if you see what I mean).

PS On another note, and I'm sure you'll like this -I've been reading some of zmck's wonderful blog at last:) Amazing what a bit of procrastination can lead to.

Good luck and good heart in this latest event..

Julie XX
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    Denis WrightJune 4, 2012 3:10 PM

    Thanks, Julie. Right now the option that works is R&R - quietness, sleep, moving around when I can, and Time. If it's obvious that these are failing - and it will be obvious very quickly if the case - then we'll look at others.

    zmkc's blogs are fascinating; not only the personal one, but the proofing failures eagle eye, and the daily WWI diary kept by her officer-grandfather; both her and my grandfather dealing with the same horrors from different parts of the trench - still the same dangers and miseries. The syncing of the diary with each day's date adds something, even though we are on the other side of the earth.
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JoanJune 3, 2012 1:21 PM

Wheatbix, blueberries, and a hot wheatbag on that back. A snuggle in bed with your laptop and kindle, and some nice ginger in dark chocolate and you'll be racing around soon.

You poor dear. This is not what you need, but it is a warning to be really careful. Like Carl and I both falling off the roof in exactly the same spot. Nothing broken, no brains spilled out on the deck. Just a severe warning to take better care of ourselves.
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    Denis WrightJune 4, 2012 2:52 PM

    That all sounds good, Joan, and if you can devise a way for me to use a laptop in bed with these impediments then you've created a miracle. I guess you'd have to see the particular group of problems to understand why I'd have no control over a laptop sitting/lying in bed. [In any case I don't really want to do that, so reading with the Kindle turns out the best option for there.] But the medical prescription of appropriate foods appeals mightily [in truth, I have them all, but there's only so much of a good thing one can get away with!

    I am so glad neither of you spilled you brains out nor broke bones. And that I didn't either!
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JoanJune 4, 2012 10:23 AM

Glad to hear you're getting better, Denis. Those falls can be really nasty, especially if you put your back out of place. It sounds as though your back is fine with perhaps some stressed or torn muscles, so you shouldn't have to visit the chiropractor.

I slipped on the ice once and put my neck out. I assumed it would get better on its own, but after several days of not being able to hold my head straight, I finally caved in and went to a chiro. Magic! He fixed me up in the first visit. No more pain; no more crooked neck.

When I see people stooped over or walking at right angles from the waist, I see someone who didn't go to the chiropractor and just grew that way in order to compensate for the injury.

Your news improves daily, although I'm sure it's much too slow for your liking.
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    Denis WrightJune 4, 2012 3:22 PM

    Yes, you've got it right, I think, with the torn muscles etc diagnosis. It's easy to forget that a 'healthy' person who goes to the chiropractor has the entire range of motion in all parts of the body I had 3 years ago. I have much more limited range than I had then, and a condition with arm and leg seizures and tremors that would require a neurological specialist.

    But you know me. Don't close options till you have to!
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JoanJune 5, 2012 11:00 AM

If you had something out of place, you'd know about it and wouldn't be thinking so much of whether a chiro or osteo could deal with your complications. So I am reassured that there is nothing wrong with your back other than some chagrin, torn muscles, and complaints of the cold. And it is cold today!! Hope you are well tucked up with your wheat bag. I'm snuggled up to my water bottle and not looking forward to having to forage for wood later today.

I'm not sure when we'll be in town. Carl has an exhibition opening at Gallery 126 on Friday, June 15, and we're both working towards that. Let me know if you're open to visitors so we can let you know when we're coming.
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AnonymousJune 5, 2012 3:02 PM

Please do try to let us know what happens today, as soon as you can manage to. Horrendous day to have to go out. This may be the coldest day I have ever experienced in my 30 or so years in Armidale. 6 degrees maximum forecast and a wind blowing. Just so readers elsewhere realise what Denis has to go out in today - I'm not happy about the thought of that.

Julie XX
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    Denis WrightJune 5, 2012 10:46 PM

    Julie: thank you. The weather wasn't a problem as we could drive very close to the entrance.

    I summed up the situation in the blog entry. We have no choice but to sit tight till we know whether or not the drug can be infused next Wed. The longer before infusion the more advantage is given to the tumour, but the risk of infusing when there are contusions/bleeding elsewhere is greater than giving the tumour more time to get away.

    The consequences of another fall for whatever reason would likely be disastrous.
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JoanJune 6, 2012 10:00 AM

Sounds as though I might have been wrong. Did you have x-rays of your back as well? I'm sorry to hear you've been having trouble sleeping because of back pain. Have you received any kind of diagnosis as to what's going on with your back, i.e. tissue damage or displacement?

Stay warm and in that sweet lying spot. I gather you're not in the mood for visitors. On scanning Tracey's FB page, I gather you've got enough going on and lots of friends dropping goodies on your doorstep.

Back pain is a bastard. I know how incapacitating it can be, and in your situation, it's another unwelcome guest. You will recover.

Much love to you, Tracey, and Christian.
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JoanJune 6, 2012 10:04 AM

Just saw your posting -- compression fracture. As you say, it's a relief somewhat to know what it is and that you can take the Avastin. A bit of good news mixed in with the bad.
I'm told such fractures will heal if you are very careful. I have a friend who is suffering this as I write. It's slow to heal, he says, but he's improving as long as he gets lots of rest.

Oh dear. What can I say? Just thanking the goddess you can take the Avastin, lie still and allow the bone to repair itself. Are you able to take pain killers at all? Even the panadol you take for headaches perhaps?

Thinking of you all the time.


DRKWJune 7, 2012 9:23 AM
In 5-billion yrs the Sun will expand & engulf our orbit as the charred ember that was once Earth vaporizes. Have a nice day.

    Denis WrightJune 7, 2012 4:40 PM
    You'd be amazed how extraordinarily unfazed I am at the plight of humanity in 5 billion years.

JoanJune 7, 2012 10:30 AM
Well, I hope I'm not around on that day the earth is vaporised by the Sun. I trust that my karma is not that bad. Denis' back and brain are enough for me to handle right now, and reading an article my sister sent me that says, "The idea of an alphabetic writing system was conceived only once in history, and all known alphabets derive from that seminal script." This was supposed to have happened in Canaanite mines in the 2nd century BCE.
Now I ask, what about Sanskrit? What about the Brahmi script? Surely this is an overstatement of the greatest magnitude. Not being a linguist or a philologist, I am not equipped to handle this, but somehow will have to tell her that this is just not on. Perhaps if I read the article, I will get some clues as to how to respond.
Back to the end of the world. Well, it wasn't the end of my world yesterday, Denis, when I watched you open that envelope with both hands, as nimbly as any of us. There was a day when I saw you at the table with one arm strapped to your side, because it was a heavy encumbrance and better off not there at all. So keep doing those arm exercises. They are obviously working and giving you a much higher quality of life than you thought a year or so ago. Patting a cat is good exercise.

    Denis WrightJune 7, 2012 5:12 PM
    Thanks so much for your surprise visit yesterday, Joan, and your handsome bag of little luxuries as well. Very thoughtful of you. I'm sure your exhibition next week will be wonderful and all the best with it. [Put your brochure up on your website!]
    I've never seen such nonsense in my life as the statement on script. It sounds like one of those ones where the author's worked backwards to make it fit derivatively. The blessed wisdom of hindsight reinventing history, with no vision that humans in various parts of the world are ingenious enough to think independently. Or so it seems from that one sentence!
    Here's probably not the place for an interesting discussion of this nature, but anyway....
    I opened the envelope nimbly because I though it might be crammed with $100 bills, you see. Ha ha. But what was there was worth much more than $$$. It's true that the arm and fingers are a bit more agile, but until I can cut up a main course properly, starting with picking up the knife with the right hand, I will know there's far to go. But yes, anything is better than the sling and the totally wasted arm.
BobJune 8, 2012 7:59 AM
Glad to read of your small progress, Denis. You give a whole new meaning to 'looking on the bright side'. Keep it up. We want to hear of similar improvement every day.

    Denis WrightJune 8, 2012 3:19 PM
    Afraid as a result of today's events, the whole game just got a lot more serious, Bob.
AnonymousJune 8, 2012 4:16 PM
Oh no. #*!!?*&%%#grr :( XXOXO
No-chucking-in-of-towels-yet. Not. Nyet. Nahin.
Julie

    Denis WrightJune 8, 2012 5:01 PM
    S'OK. Towels still safely in cupboard.
AnonymousJune 8, 2012 5:20 PM
Denis I believe that DRKW was obliquely suggesting his/her hope that your doctors (and of course yourself) are correctly weighing the risk of kidney complications against the benefits of the Avastin.
Anyway, I'm probably wrong, and in which case please ignore that bit, and just accept my continuing thoughts and wishes.
kvd
(ps if s/he's right about the charred ember bit, maybe I should spend all my paper money tomorrow and commence lobbying for ceramic 5c pieces to be introduced?)

    Denis WrightJune 9, 2012 10:06 AM
    He's a he - Dr Dennis Wright, a US brain tumour researcher. The risk was one that was weighed when we took the decision to have Avastin, the choice being between that and being dead by the end of 2010. It wasn't a hard choice to make, cost aside.
    We knew it was always going to be a pact with the Devil, but with GBM4s you don't look for cures that will take 5 years to come on the market after development, you accept something with a fair record of success that has a chance of buying time against the option of being dead.
    The formula for calculating risk in that case is well established. If the reading is above a certain point, the risks of kidney failure are higher than the benefit of Avastin to the brain.
    That's what will be assessed on Tuesday with the 24 hr test that clearly settles what is happening in the kidneys. Unless it changes to borderline or better from Thursday's very high reading, it's very stark. End of Avastin.
    Thanks for the kind thoughts. Perhaps we might worry about the ceramic coins a little bit closer to the date!
AnonymousJune 8, 2012 6:10 PM
No. DRKW wrote that yesterday morning.
DRKW makes a terrific acronym ;-)
Signed, Mrs Denis Wright
AnonymousJune 8, 2012 6:37 PM
Well ok then, my misunderstanding. But in which case:
1) I can understand why Denis was 'unfazed'
2) Skip to my para 2 (there be music for that..)
3) Take care also of yourself, just as Denis obviously wishes.
kvd
DRKWJune 9, 2012 1:59 AM
Omniscience approaches...
Nosce te ipsum. Lucre verdi non tas.
In 1735, Carl Linnaeus published the first edition of Systema Naturae in which he described humans (Homo) with the simple phrase "Nosce te ipsum."
Nomina si nescis, perit & cognitio rerum.
(If you don't know names, knowledge of things also is lost.)
Carl Linnaeus, 1737.
All the best.

    Denis WrightJune 9, 2012 10:13 AM

    Confucius expressed the same thing in broader context with his 'Rectification of Names' principle in the 6th Century BCE. It still holds good – at least, to the limited extent that words can convey true/complete meaning.
JoanJune 10, 2012 10:35 AM
I trust you will meticulously record any observable changes due to the delay of the Avastin, so I'm checking your blog and FB page several times a day.
If you're getting a headache, it's probably me trying to get into your brain during my meditations, in battle with Brian.
I trust that Soxy conintues to look after you in her subtle but attentive pussycat way. It's been my experience that cats know when you're sick or troubled and they will sit or lie by your side, pumping out good vibes. I once had a herniated disk, and many of you out there will know what that feels like. I couldn't find a comfortable bed, so I wandered from room to room in the middle of the night, howling in pain all the way. My little pussycat followed me and when I eventually settled down, she curled up on the bed and did her best to soothe my suffering.

    Denis WrightJune 10, 2012 6:27 PM
    Hey no pressure....
    Thanks for the concern, Joan. I'll let you know of any significant events so you can refocus the meditation [it seems a bit like radiology!]
    Truth is I'm hoping for a very bland day in all respects, no dramas - rather like today in fact.
    Soxy is doing her bit, making sure the household is run properly according to her specifications. I must admit it's quite an amazing change, but in many ways it makes sense. I fear she doesn't quite have for me your kitty's concern for you, but that's OK. Maybe slightly less demonstrative in her affections.
AnonymousJune 10, 2012 4:15 PM
Joan, somehow I sense that Soxy is not that kind of little pussy cat:)
Mrs Denis Wright, I wish I could guess what that acronym could be!
Mr Denis Wright, that Confucius information is one reason I love you!
Julie XX
DRKWJune 10, 2012 10:33 PM
FYI -
http://www.gene.com/gene/products/information/pdf/avastin-prescribing.pdf
5.8 Proteinuria
The incidence and severity of proteinuria is increased in patients receiving Avastin as compared to
controls. Nephrotic syndrome occurred in  1% of patients receiving Avastin in clinical trials, in
some instances with fatal outcome. [See Adverse Reactions (6.1).] In a published case series, kidney
biopsy of six patients with proteinuria showed findings consistent with thrombotic microangiopathy.
Monitor proteinuria by dipstick urine analysis for the development or worsening of proteinuria
with serial urinalyses during Avastin therapy. Patients with a 2  or greater urine dipstick reading
should undergo further assessment with a 24-hour urine collection.
Suspend Avastin administration for  2 grams of proteinuria/24 hours and resume when
proteinuria is  2 gm/24 hours. Discontinue Avastin in patients with nephrotic syndrome. Data
from a postmarketing safety study showed poor correlation between UPCR (Urine
Protein/Creatinine Ratio) and 24 hour urine protein (Pearson Correlation 0.39 (95% CI 0.17, 0.57).
[See Use in Specific Populations (8.5).] The safety of continued Avastin treatment in patients with
moderate to severe proteinuria has not been evaluated. [See Dosage and Administration (2.4).]
All the best!

    Denis WrightJune 11, 2012 1:58 PM
    Yes, we have researched this and I believe it mostly conforms with what we have done and are doing and understand. So what do you draw from these data in this case?
    Delete
    DRKWJune 11, 2012 9:44 PM
    Triage: The term comes from the French verb 'trier', meaning to separate, sift or select.
    Consider the immediate -
    An offered cigarette at a firing squad should not be declined due to the possibility of contracting lung cancer (id est: the possibility of dialysis is preferable to the alternative).
    Delete
    AnonymousJune 12, 2012 5:31 PM
    Sitting here, waiting for your news (not ever to be compared to your own worries) I am struck by DRKW's plain honest assessments. My wife was blessed with such a doctor, and it wasn't pleasant to hear, but my how much we appreciated his candour.
    I know now that our doctor's words were so phrased as to protect his ability to carry on, as much as to speak the truths which we sometimes did not wish to hear.
    With the very best of wishes.
    kvd
    Delete
    Denis WrightJune 13, 2012 1:19 AM
    Yes. We chose our GP on the basis that he was not only an excellent physician, but he dealt with us with utter frankness. We have exactly the same relationship with my Oncologist, and for that matter the oncology staff at the hospital and those engaged in palliative care. I would not have it any other way.
JoanJune 11, 2012 10:18 AM
A friend of mine put his back out and couldn't get out of bed. He just kept a bottle handy, which his partner emptied without fuss when needed.
Julie, Soxy has become a reborn cat and now sits at Denis' feet instead of curling up near the fire. For a cat, especially one like Soxy, that's pure devotion.

    Denis WrightJune 11, 2012 2:09 PM
    There is that option if and when needed. Within sensible limits I'll try to retain as much independence as possible, but I have no intention of pushing past safe limits as I did unwittingly on that one occasion.
    "You can't herd cats, but you can move their food." Good quote, huh? We found that useful. But there was one move she had to make first, and that was to walk through the door.
JoanJune 12, 2012 10:43 AM
It's amazing how the most minute movement of a cat can have major significance. That's their power. If I walked through the door, who would notice? But a cat -- well, it means a major shift in the universe.
Good luck with the test results. Will keep checking.

    Denis WrightJune 12, 2012 12:21 PM
    The world inside a cat's brain must be a strange place, unlike inside Teddy's, where things just rattled around.
    Like us, I guess you'll have to assume that no news is, well, no news.
AnonymousJune 13, 2012 4:19 PM
Pretty bloody good and a big relief that Friday is on, all things considered. Yay!
joanne xx

    Denis WrightJune 16, 2012 9:59 AM
    Thanks, Joanne. All those good vibes coming from every where, even that damn cat!
JoanJune 13, 2012 5:01 PM
Better means improvement. Sounds as though your fall shook things up a bit. Let's hope that's the cause.
Thank the goddess!! Maybe thank Soxy for her purrfect vibes.

    Denis WrightJune 16, 2012 10:01 AM
    See comment above! :)
JoanJune 16, 2012 11:00 AM
Yay! You're back on track and your situation is about to improve considerably. I hope you are gradually regaining your mobility and will be able to go for walks outside again. I read on FB that Soxy has moved out, so I guess she knows you no longer need her care. That's good news about the seizure medication, which no doubt relieves considerable anxiety as well as reducing the severity and frequency of seizures.
Keep doing your morning zen koans and report to your online roshi - us.


Bob LakeJune 16, 2012 11:18 AM
Pleased to read that you were able to have the Avastin infusion and that improving your Dilantin levels will hopefully bring about an additional improvement. Keep it up. Best wishes.


Saturday, 2 June 2012  6:30 PM.

Quick update: As happened yesterday, I found things improved over the day a little after a long sleep. I am hoping that unlike yesterday, this improvement remains. I am happy that after losing 90% of strength in the right leg overnight [making it very difficult to lift the foot at all], I have regained some strength in it after sleeping. I hope for a better night tonight and some mending of the back tissues through the night.

Saturday, 2 June 2012  7:50 AM.

Apart from the first night after brain surgery on 17 December 2009, the last two days have been the worst in my life.

On Thursday night, 6 pm, I was standing in the bathroom towelling off after a shower when I felt the sudden onset of a seizure. Usually I would dash for a chair or the bed and ride it out there, but for some crazy reason I thought this one would be over quickly and I'd simply stand there till it passed.

Huge mistake. This one turned out to be much bigger than I expected, going down the right side of the neck, into the hip, knee and ankle. I had no control over the leg so I couldn't move it even if I tried, and I collapsed against the bathroom wall to the floor, and squashed an electric heater [which, let me say, was not the bar type but pumped air out from the top.]

I ended up on the right side of my rump on the floor, and being paralysed on that side I could not move from that position. Tracey came running in. Christian was at SES, so with much effort and ingenuity, Tracey got me on a low chair long enough for me to get some strength back, and finally we got some clothes on me and I went to bed.

The worst damage was/is to my back, and it's very painful. It's the same sort of pain chronic back pain sufferers get, though theirs may well be worse. For me, the complication is that I can barely lift either leg, especially the right. Sitting in a chair is painful, and to try to move in bed is very difficult. Consequently, I now have great difficulty walking, and every step has to be taken with extreme care.

Yesterday I thought it was improving, and it did for a couple of hours, which relieved me a lot, but sadly all the worst features have returned, and with the pain comes nausea. Fortunately, I didn't strike my head on the way down to the floor. We've had someone in to check things over.

Two nights without sleep in unpleasant, as many know, and I have to go back to bed now and see if that has a positive effect as it seemed to yesterday.

I am pretty shocked at how far this has set me back. The seizure has had other effects, but that's enough whining for now.


Wednesday, 30 May 2012 9:26 AM.

For the moment at least, I think that shaky period has stabilised a bit. I don't feel so leaden but my balance is not good. I have done exercises faithfully enough and am wearing walking shoes. If it rains – which it seems likely to do – I'll do my circumambulation round the house, Duke of Edinburgh style.


Monday, 28 May 2012  10:00 AM.

Well, that was an uncomfortable night. I skipped my afternoon sleep because  of the late start to Sunday and simply didn't feel like sleeping, but compensated by going to bed earlier.

Turning on my side to sleep, I was getting low level pain - an ache really - in the top right half of my torso, but I did get to sleep till about 3.30 am, waking from a disturbing dream, my right hand fingers feeling on the edge of a seizure start. The ache in the lung area had gone.

After trying to get the  dream images out of my mind and failing, fingers twitchy, I read in bed using the Kindle, reading rather more soothing things [the Tao te Ching mainly, if you want to know!] and resettled after an hour.

The Kindle, like a book, still has to be manipulated with both hands if you're reading in bed, but much easier than a book and far better to read from than hard print. But trying to hold it firmly enough also needs a steady-ish right hand, and this helped hold off the seizure [or seemed to anyway, though some seizures can't be denied when they hit].

Going back to sleep, I felt the twitchiness begin again, but my mind was more settled, and at some stage I fell asleep and didn't wake till 9.30 am.

I feel OK now, but tired. I guess the best thing to do on this cold, windy, cloudy day will be to go to bed soon after lunch and hope to resume what is a normal pattern for me.

I felt like I had taken the initiative against the seizure activity, and whether it's illusory or not, that gives back a sense of power in an area where I've been consistently powerless for so long. Being realistic, I won't be surprised if an unstoppable seizure is on the way, but at least it hasn't happened when I felt it was fairly inevitable.

The intermittent little twinges in the right hand remain. These aren't tremors; I know what they are....


Sunday, 27 May 2012 10:12 AM.

I slept late this morning [hey, it is Sunday!] and have done nothing more than have my medications with some breakfast - a few fresh strawberries, weetbix and green tea. The spellchecker doesn't like 'weetbix' and suggests 'sweetbrier' instead. Maybe I should have left it at that and had you wondering why I was consuming a Eurasian rose (Rosa eglanteria) having prickly stems, fragrant leaves, bright pink flowers, and scarlet hips. [I just know these things....]

No, it was weetbix, the cheapest and most perfect of all breakfast concoctions bar porridge.

As you can see, I don't have much to report for the entire week – no dramas; just a couple of headaches and increasing lassitude and oversleeping. You could say the clock has been running down quietly as it gets closer to my next hit of Avastin.

A positive thing this cycle is that I appear to have fewer skin lesions. Perhaps I am more conscious of not bumping the right arm, as my balance gets worse, or that for last weekend we had a Clexane rest.... I don't know.

I'll do housekeeping of this part of the site a little later. It hasn't been a bad week.


Friday, 25 May 2012 2:24 PM.

A wet, windy, unpleasant day outside. This is not walking-outside weather. But I need to walk, so in the past day or two I've invoked a new regime for indoor walking. It works rather well.

After sitting and reading/writing for an hours or so, my slow circulation dictates that my feet slowly turn into blocks of ice. So, at least once per day, I now exercise the top half of my body with vertical pushups [don't laugh - put your feet back 3/4m from the doorway and try it! Do it properly now and you'd be surprised.]

Then I choose a starting point in the house, and check the time, and start to walk round a circuit from one room to another, through the room to the next, until I come back to my starting point. I then reverse direction and do the circuit again, and continue this exercise for a set period, only the next day I increase the time by two minutes.

This routine has a number of advantages over walking holding Tracey's arm for balance, though it's not something I'd want to do in place of walking outside; either in addition, or when the weather outside is unsuitable.
  • I can do it on my own. This means that I can focus on balance because indoors I know every inch of the floor.
  • Getting round obstacles is good for coordination.
  • Reversing the direction means that the legs are exercised against the challenge in different ways.
  • It warms me up!
  • It's good for circulation.
  • Working on a timer means no slacking.
  • I can concentrate also on body symmetry.

Win-win, I reckon.

In other respects, things are going along quietly. There are hiccups but nothing at this stage to get upset about.


Wednesday, 23 May 2012  1:29 PM.

I'm feeling quite good. I don't seem to have developed spots on my arm this time – not so far anyway. I've had no more headaches since Sunday night.

Yesterday I spent time walking around the house unassisted [in the sense that I wasn't holding on to anyone] instead of outside, as the weather was unpleasant. This was a good exercise. In other respects, it's business as usual. Hoping it stays that way. Am I tempting fate?


Sunday, 20 May 2012 10:16 AM. 

Weekly roundup time as it edges towards the end of May. The graph would have dipped a bit midweek but in spite of one seizure just before Avastin infusion, there's not a lot to say. 

I am finding it more difficult to swallow at times, but that feeling comes and goes, and it leaves me with the uncomfortable sensation that there's something in my throat; a sensation that also comes and goes. Considering the number and size of pills I swallow daily, that might not be surprising. After the seizure I also had a sensation that I've had before; a difficulty taking a breath. I haven't felt that since having the Avastin last Tuesday.

Comments 19 May – 2 June 2012

25 comments (Click!):

    Suzie Shapoozie May 21, 2012 12:05 PM

    Hi Denis :)

    You were in my thoughts this morning & I wanted to say g'day & pop over & see how you're going.

    Also, now I'm here, I figured I'd best leave a little note to let you know that I popped over for a visit.

    So here. Here is that note ;) and I wish you a cosy, warm & comfortable day.

    xxx
   
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        Denis Wright May 23, 2012 2:15 PM

        Thanks, Suzie. As I said just now, so far so good.
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    Anonymous May 21, 2012 11:06 PM

     Nasty to feel difficulty in taking a breath. Swallowing - do you experience a dry mouth? If so, you can get something that moistens your mouth, from the chemist. The swallow response is tricky - people can 'forget' how to swallow; it's one of those automatic body/brain actions. Stroke victims often have trouble with swallowing. Something to mention to the doctor, as they have all sorts of little 'tricks' with these issues.Hope I can come around soon if you are up to it.

    Julie xx
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        Denis WrightMay 23, 2012 2:24 PM

        No, no dry mouth. It's not so much an inability to swallow, but that it can be an effort after a seizure, and I seem to have developed a chronic feeling that there's something in my throat. Ironically, I was giving advice myself a few months ago on how to swallow pills! I can swallow them; it's just the lingering stuck-in-the-throat feeling - disconcerting.

        I am finding that chewing Cobalt gum when the throat feels particularly annoying makes a difference. Taking pills 4 times a day leaves little respite for the throat.
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    LenaMay 22, 2012 10:02 AM

    Just visiting, as I do often. I am usually wearing my cloke of invisibility though. XXXXX
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        Denis WrightMay 23, 2012 2:32 PM

        I can't see you, but I know you're there.... Thanks, Lena!
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    LenaMay 22, 2012 10:03 AM

    CLOAK!!!
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        Denis WrightMay 23, 2012 2:33 PM

        Japanese frog? :)
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    Roger RivenellMay 22, 2012 11:33 AM

    I never cease to be amazed by your indomitable spirit, Denis. Tracey obviously shares that too. Daughter of her mother!

    Roger
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        Denis WrightMay 23, 2012 2:34 PM

        Thanks Roger. Neither of them give in easily, especially when loved ones are under threat.
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    JoanMay 26, 2012 11:25 AM

    Those horsepills can nearly choke you and do leave a nasty feeling in your throat, as though you've just tried to swallow a wire brush. And the feeling can linger for quite a while. I trust this new throat sensation is just that -- your throat telling you what it thinks about all this pill business.

    I hope you've got lots of hot water bottles these days, Denis. I've got one on my back right now, had one in the bed last night, and this morning had one under my feet. Couldn't live without them in this winter denying society. I was never this cold in Canada despite the 35 below temperatures. No wonder we have such a problem with climate change deniers in this country. Australians have never accepted that there is a climate at all. Actually, I think climate change is being driven by all the hot air coming out of Canberra right now.

    Nice sunny day today. I hope you get to walk outside.
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        Denis WrightMay 27, 2012 11:02 AM

        Yes, Joan – I also hope it's just a reaction to the constant pill popping, but being realistic one can't ignore a creeping attack by the tumour on that part of the brain centre to do with the mechanics of swallowing. But we all know this. The fact that it comes and goes, and is worse after medications is probably a bit encouraging.

        We use heat-wheats in preference to water-bottles though they serve the same function and are very effective in the way the latter are. The fact that they can be quickly heated in the microwave makes them more convenient. [I know, you don't have one of those!]

        Politics are neither entertaining nor edifying at the moment – anywhere in the world! Despair on that count.
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    Glenn McGowranMay 27, 2012 2:12 PM

    Denis, I’ve just received some news after an agonising 3 week wait. I was walking home from the local oval after my personal training session, which I do twice a week. When my mobile phone (which I never use and blame as the cause of my tumour) rang, I only answer my phone if I am waiting on results, and then I only answer if the call is from a private number; which this call was. After some initial heart stopping moments (because the Dr was comparing my current scan to my previous pre-operative scan… so he said there were some areas of concern and possible tumour growth.. once I worked out he was looking at an out-dated scan, he revaluated his diagnosis and determined the area was more likely to be swelling around the edge of the surgical site rather than tumour growth, and that we can continue on with the regime of regular scans every 6 months. So that is great news for me, no scans for 6 months… 6 months I can spend relatively worry free with my boy, watching him grow at a rapid rate. Matthew is 9 weeks old now and a very happy relaxed boy. Incidentally I too often have trouble swallowing, i often choke while eating because the food gets stuck in my throat … then I get the hiccups and try to wash the food down with water, which causes the choking and a horrible gargling noise which causes my wife’s anxiety levels to skyrocket. I have narrowed down my choking events to times when I head a solid protein with a carb i.e. Chicken roll or, sandwich… or even schnitzel with chips… I always ensure I have a drink close by in case I start choking.. And even better a drink with a straw, I find using a straw dislodges the blockage more efficiently. Well time to get off the computer and enjoy this wonderful day with my family.
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        Denis WrightMay 28, 2012 11:20 AM

        Hi Glenn. Three weeks must seem a long time in these circumstances, and though they fly by to me, it does seem ages since your last MRI. [Einstein was right - time sure is relative.]

        Your experience reminds us that brain surgeons are so overworked that it is very easy for them to make mistakes in areas other than the operation itself, and that wrong MRI if you hadn't been on the ball could have had serious consequences in several ways, especially extra stress on you and your family.

        In my view, stress is a very big player in the day-to-day management of brain tumours, by which I mean stress levels need to be as low as possible. Enjoy the time with family - that part is very heart-warming for us all, I'm sure.

        I haven't had those choking incidents - not yet anyway - but they must be very disconcerting [to understate it] for you and your wife. That's the trouble with elements of this condition - you never know how far an incident might go. Should the ambulance be called? It could be just a very temporary crisis, soon over. Or the start of something that could get out of control if not attended to by someone who really knows what's happening.

        I'll file away the straw trick. I would never have thought of that. We probably have some in the cupboard if it comes to that. For me, it's the old Buddhist advice - 'wash the dishes while washing the dishes' - which means focusing on one thing at a time, even if it's something as natural in normal life as swallowing.

        Please keep us up to date with developments, whether positive or negative. There are now many who read this part of the blog because they find useful things that provide other windows on their own circumstances, however different they may be. Thanks for opening yours to us.
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    AnonymousMay 28, 2012 7:34 AM

    Wonderful news that you have this "reprieve" Glenn. Must be such a delight having the baby around!! My mother (stroke) also finds it best to use a straw to drink, now. Go well:)

    Denis, I'm overloaded again of late with mum's move to Wollemi (high care) about 3 weeks ago and her subsequent confusion/shock, and another 3 batches of marking -saying this because I have planned to try to see you for some time!!
    It's difficult to see anyone because the times I feel I must be there are lunchtimes (12 -2) and evenings (5 - 6)at least. In between, everything else.

    Julie
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        Denis WrightMay 28, 2012 11:32 AM

        Julie - the time will make itself when it is right. You need to get your mother as settled in as possible. It's such a difficult time all round when parents have to go into a new environment where they have less and less control over their lives but it has to be that way because no person can look after someone who needs round-the-clock total care for 24 hours a day.

        As to the Perils, they put a few grains of rice on the plate, so you must do them! Don't stress - we know you'll come when you are able, and you shouldn't think of trying to before then. We are in touch by other means that don't involve the complexities of personal visits, however welcome they are.
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    JoanMay 29, 2012 10:11 AM

    My mother used to call hot water bottles "plastic mamas". So I always associate them with primal comfort. Don't know if I could feel that way about a bag of wheat, especially if it involved the microwave.

    I do enjoy using the microwave when we are on holiday. It makes terrific cappuccino froth. But because microwave and general electromagnetic radiation have been implicated in the current cancer epidemic, they do not inspire feelings of primal comfort in me. In fact, when I use the microwave to heat my milk or anything else, I always leave the room while it's working. Also, I never use plastic dishes in the microwave, as I'm told that the petrochemicals migrate into your food. I've been advised to always use glass dishes in the m/w. In fact, we've stopped using plastic food storage containers for this reason, i.e. the chemical contamination, and are gradually transferring everything to glass jars.

    Am I paranoid or what? :)

    Enjoy your mother of wheat. Demeter and her daughter Ceres are in it. It's believed that the secret of the Eleusinian mysteries was the ritual revealing of an ear of wheat. So perhaps your surrogate mama is more primal than mine.
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        Denis WrightMay 30, 2012 9:04 AM

        No, I don't think you're paranoid. Glenn, you may note, ascribes his brain tumour to use of a cellphone. I think there are any number of possibilities associated with modern living that could be the cause of various cancers. I would very much like to know exactly what caused mine, but I won't.

        So we compromise. We do things in our youth that can't be undone later but may contribute to cancer. We sit in cars, in traffic, in fumes, with electric wires outside the door that make fearful noises on the AM radio band. We sit in front of computers and TVs, surrounded by wifi signals. God knows just what effect various additives have to do with stomach cancers.

        Funnily enough I think the effect of the m/w on the heatwheat is the absolute least of concerns, as the radiation is gone at the speed of light - but who knows? String theory suggests that everything we think we know about matter and energy is one small portion of a whole that doesn't conform to rational logic and 'common' sense. We'll all die before the jury returns.

        The old Taoist vision of the simple life is a perfect one, but who's going to give up every trapping of modern civilisation to return to the 'knotting of ropes' and no phone?

        When our collective appendix is about to burst, we say thanks to all modern science for saving us from a hideous death.

        Here endeth the rant!
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    JoanMay 29, 2012 10:13 AM

    I keep trying to "subscribe by email" to the What's New section, but keep getting told that "an error occurred while contacting the server." I have no trouble with other threads of your blog, Denis. Is this a problem for everyone, or just me?
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        Denis WrightMay 30, 2012 9:23 AM

        Ah. It could be because the WHAT'S NEW! section is not a normal posting but what's called a separate 'page' in the blogging program and shows up in the right side navigation bar. This sets it apart from a normal posting because I don't want the blog itself littered with little updates.

        I'm not sure the program can handle subscription to 'pages' by email, even though it lies blatantly by pretending to offer you the choice.

        I can't do anything about that, I think. Call on us sometime you leave the knotting of rope and you come to the Big Smoke of Armidale?
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    JoanMay 31, 2012 10:05 AM

    As soon as I get over this cold, I'll be there. I don't feel too bad, but Carl says I'm running a fever, so I think I'll just enjoy a day of delirium and not try to make deathless art.

    As for the m/w, it's not the wheat I'm worried about, it's the body waiting in front of the m/w that concerns me. Often I feel very fortunate that we live such a spartan lifestyle, with very little radiation other than what comes from the surrounding granite boulders. But then, tomorrow I could discover a lump somewhere, so who knows? People got cancer before we discovered electricity. I was brought up breathing in 24D, DDT, Dieldrin, Aldrin, 245T, etc. etc. The day reckoning will come.
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        Denis WrightMay 31, 2012 12:32 PM

        Yes, you're going to have to be certain you're well over the cold or you'll be refused entry! We can't afford to take chances on that one, not only because we're wary of infections from my point of view, given my lower immunity level, but also because if I contracted some fluey condition within days of your coming, and karked it, you might blame yourself, whether or not you were responsible.

        So we take no chances on that one for all our sakes.

        And yes, I never get close to the front of the microwave while it's on either, and seeing little kids elsewhere with their noses practically up against the glass door waiting for popcorn to do its thing gives me the heeby-jeebies.

        I also think back to the days of ag poisons on our property as kids and shiver when I think of some of the risks we couldn't avoid because we had no idea what they were.
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    JoanJune 1, 2012 10:54 AM

    It's a very slight cold and probably won't kill you, but actually I'm taking the opportunity to be a lazy slob and just sit by the fire and read. I think I caught it before it caught me, but I still wouldn't want anyone else to get it lest it turn into a monster inside someone else's body.

    The agricultural chemicals were something I ate for breakfast. My father used to manufacture them long before the days when they were declared poisonous and any precautions were taken either by the manufacturer or the farmer.

    My poor mother tried to grow house plants, but they turned into twisted, tortured, deformed, and dwarfed freaks. Imagine what that was doing to the rest of us.

    Fortunately, I was 5 years old by the time that started, so wasn't exposed in the womb. The insecticides are designed to hit the central nervous systems of very small creatures, and at some point in our lives, we are all very small creatures. I wonder how much this exposure in the womb has to do with autism, hyperactivity, ADHD and other nervous disorders for which we currently medicate very young children.
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    JoanJune 2, 2012 11:19 AM

    Oh dear!! That's no good. You won't be reading this as you are in bed with a sore back and a sore everything. You WILL get over this. A fall is bad enough without Brian hanging around. It took me two weeks to get over falling off the roof, and like you, fortunately nothing was broken. Our ageing bodies don't bounce anymore and we must be very careful not to drop them. Thank the goddess the heater wasn't a bar heater.

    I'll be watching the blog for your return to your study. Pain killers are always nearby in our house.

    I hope you feel well enough to enjoy your kindle.

    Lots of love,
    Joan
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    LenaJune 2, 2012 12:27 PM

    I knew about the fall almost at once Den. and I read your entry and feel very sad about your pain & inability to move as freely. I know you wouldn't say "Oh F...K IT' But I would. Sending you love and all that white light s..t.

    Nothing I can do, but know you that I would if I could.
    Lena XXXX
Friday, 18 May 2012 9:12 AM.

After exercising this morning, I feel quite strong and clear-headed. Nothing untoward to report on a bright sunny cold winter's morning with the weekend ahead. 


Thursday, 17 May 2012 10:08 AM.

Not a great deal to report. We walked yesterday and I didn't do too badly; better than I expected. I think the Avastin positive effects filter through after a full day, but at night, I seem to get a headache 24 hours after Avastin. Panadol sent that away overnight.

I resolved to go to bed earlier, which I did, but my body seems locked into a 'number of hours' sleep cycle, so I woke exactly that much earlier, leaving me with the dilemma of getting up or trying to sleep more.

In the end I read for some time until my right hand couldn't hold the little Kindle any longer because of tremor – a nuisance but it would be ten times worse trying to hold a book [I couldn't, in fact] – and then went back to sleep till 9 am, but it wasn't particularly refreshing.

But I'm here and functioning OK, so we see what the day brings.


Wednesday, 16 May 2012 9:07 AM.

I can't say I don't give myself new experiences. An hour before the Avastin shot yesterday, I could feel the signs of focal seizure coming on - the dull heaviness of the right arm with no response to brain signal, and vague pulsing sensations in the background.

It's not much of a warning actually - less than a minute as a rule. I quickly went to the bedroom and lay down, as you never know how these seizures can develop, and I figure lying on a bed is a pretty good idea if the unexpected happens.

As it turned out, it was a typical mid-range seizure down the right side, though a lot of the time in the fingers. This time their flexing and twisting got really tiring, but you can't tell them to stop. Well, you do, but they take no notice because the drunk driver's at the wheel for those actions.

It's the comparatively short rippling of the effect down the whole right side that does the real damage, though it's usually not particularly painful – just shuddering spasms of the leg and foot and all the joints on that side, as if some force grips and rips. I remain fully conscious.

After it, as usual, I felt an intense weariness I can't describe. That's 'normal'. After some time I get control back, but it's always less than it was.

 The Avastin infusion was perfectly routine. Pumping up those veins in the left hand is good. There's no chance we can use the right, especially an hour after a seizure. Blood pressure was ridiculously high for me at 159/89, but after the seizure, that wasn't surprising. Weight's gone down slightly. That was [surprising].

After we came home I slept till well after dark. When I woke I felt as if I couldn't or didn't want to move. I could have gone back to sleep, but there are medications to take. It seemed a huge effort just to reach out and switch on the bedside lamp.

The evening was OK. I slept well afterwards, had another strange dream, exercised to make sure I still control my right side to some extent, medicated, and here I am.

Pretty much Groundhog Day really. Yeah


Tuesday, 15 May 2012 7:55 AM.

Yesterday was a very 'heavy' day, which means that I felt as if my body was encased in lead. I've experienced these times before, usually close to the Avastin infusion date. So I am guessing that after the hit today, in spite of other after-effects, that feeling will subside. 

In fact, it doesn't feel so bad today, at the moment at least, but then I've had hours of sleep, so maybe the brain is feeling more cooperative.

There are so many factors involved. There are so many differences between cases that it's no wonder the concept of the magic bullet, or one-size-fits-all, is one of the great cancer illusions. If you want some new insights into this, read this news article. It's very brief but to the point. I have some reservations about bits of it, but it's heading in the right direction.

I hope the White Witch with the sharp needle is on the ball today. I'll drink a lot of water, exercise the wrist and arm as much as I sensibly can before going to the hospital, keep it warm, hope the protein count is acceptable [because if it's too high they can't administer the drug] and steady the wrist for the ride.

Incidentally, it's often the case that my blood pressure reading at Oncology is far higher than when the GP takes it, or if I do it at home. The reason is, I suspect, that there is always some stress in my mind over the protein count in the urine sample. My BP can vary quite a bit within minutes of taking two readings, so others should be aware that what comes up on the meter at the hospital may not reflect normal BP for them. 

It's a good idea to have your own BP monitor and regularly take and record BP [says he, who hasn't done that in quite a while].


Sunday, 13 May 2012  9:52 AM.

A late start today, as I slept in [hey, why not?] and I've decided to leave the week's posting there this time, because the previous one [Friday's] was a fair summary for the week. I refuse to look at the last seizure date and start counting!

I also responded to some comments that were there so if you happen to cruise past, Bob and Liz, they're there.

Nothing more to add for now, though I know I shouldn't say that. It seems to tempt fate.


Friday, 11 May 2012 10:41 AM. 

I woke up and did a little reading in bed from the latest novel on the Kindle reader. I'm doing that increasingly – reading in bed. On a cold morning it's a nice place to be. Sometimes I feel like staying there all morning but I've got to exercise, eat a little and take those medications. 

My right side is continuing to respond less to brain signals. As I walk, my body feels bent like a banana. It must look so. When I stand, I have to remind myself constantly to lock my knees and not let them turn to rubber as they tend to, especially when I go into some reverie. 

Sitting down, I am constantly straightening my body as it lists further and further to starboard. 

If I do get into trouble with balance it's when I try to pivot automatically on the right foot to turn and walk, as we all do a hundred times a day. The rest of my body's on its way, but the foot could be still on the spot where it was. That sure makes me feel odd. 

Yet, I am clear-headed for the most part. I know I couldn't be writing blog entries if I weren't. I rarely get headaches, and if I do, they're minor. If my brain's foggy, it's always when I am tired, though the tiredness creeps up on me more and more quickly. 

The rest of my body seems to function reasonably. We go for our walks but some days it's harder than others. Last time, my foot got more draggy than usual and I was tired when we got home. My ankles are a bit swollen, but not my feet. Most people would barely notice. 

I can still shower and dress, given time, and often am quite good at tying my shoelaces. I am not getting many seizures and they tend not to be all that debilitating in the short term at least. There can't be that much brain inflammation, or the Avastin is keeping it at bay, or masking its effects. 

Sometimes brain inflammation only really shows up on an MRI. Maybe it's nearly time to have another one. I used to hate the claustrophobic process but now it doesn't bother me. I sometimes think I could fall asleep in there. No matter what it shows, when we do it, I think I am prepared for it. Still, it's surprising how what you think your reactions will be can be quite different when faced with reality. 

I think that's enough for a Friday. It's almost a weekly summary really.


Wednesday, 9 May 2012 9:49 AM.

A week before another Avastin shot. Well, Tuesday it will be, as ANZAC Day last time brought it forward by a day and they are sticking with the exact 3 week cycle thence. 15 May.

After failing for the first time to sleep properly in the afternoon yesterday, I went to bed earlier and slept till 8.15; 8 hrs in a row. That's pretty much a record. I feel refreshed. When I can focus my eyes on the screen and there aren't too many typos then I know that the brain's benefited from sleep. My head, which has been very foggy, is clear now.

I had things to say but they've melted away. That's frustrating but how it is. They'll come back. They can't be all that earth-shattering not to come to mind. They'll return anyway, in another form.

It's a sunny winter morning here. My feet and ankles show little sign of swelling. Weather plays a big role in this, it seems. Dry coolness is the best. I think I'd be in big trouble in a hot climate with this condition.


Monday, 7 May 2012  9:56 AM.

Our good friends the Watsons have come, bearing gifts of fresh farm produce, wholesome bakery items from Maureen's magic kitchen, and preserved fruits and condiments of various kinds. We've had a cup of tea and a chat, and here we are.

Sleeping is no problem, though the dreams are getting more and more peculiar. I find they end with me in a spot of bother of some sort, and am relieved when I wake and find I don't need to try to solve the dream problem; such as how to exit from a commercial jet airliner at 9000 metres with my parachute on, and when exactly I should pull the ripcord when I start the descent. If I can get out of the plane, i.e. When I wake I am still in the plane.

It doesn't take much of a dream analyst to work that one out. I can't say I have that much confidence in the parachute.

When I got up I did the usual morning exercises, and was surprised that the right leg was so much less responsive to commands from the brain than it was even yesterday. Each movement is scrambled, joints failing to act or out of sequence. I worked on making the right side, especially the knee, do what I wanted and by the end of the session I knew I'd be able to walk safely to the kitchen.

I have to be ever more watchful in moving around, especially not to assume as I have done for more than six decades that the leg will move in response to an auto-command.

Otherwise, my head is clear until the fog descends, as it will before long, and I will have to sleep. I have to take advantage of those couple of hours.

One last thing: I am finding even with my left hand that I have less control over pressure on the keys of the computer keyboard. With my one-handed typing, I have now to press each key consciously at the same strength to create a sentence with no letters missing. This rather interrupts the flow of thought, as you can imagine, and makes it even slower to type. Expect brief emails when you get one. I have to become master of the haiku, and I'm not particularly good at that.

Oh by the way, the keyboard was cleaned just a few weeks ago by the girls, every key popped off and working a treat. It's not some gunk under the key.


Sunday, 6 May 2012 8:15 AM.

Another weekly roundup. By the time I've got to this point in a week the rest of it has faded into a blur of days. Apart from the seizure on my birthday, there's nothing to further to report on that front.

Balance continues to deteriorate. I do exercises to try to promote it. There's no way to tell if they help physically but just doing them makes me feel I'm not just yielding to the inevitable with a whimper and no fight.

The right forearm is a welter of red spots but some are fading as the effects in that respect of the last Avastin shot wear off in that sense. Generally the skin on my skinny arms is wrinkling quickly, as if I were getting an injection of formaldehyde along with the Avastin, and being mummified, not very skilfully.

I came across this image yesterday, taken 5+ years ago, and was going to invert it and make a joke about planking, but I was struck by the changes to my poor right arm from the one in this shot, now so thin and weak and distorted.

A heavy frost this morning tells us that winter is here. Christian went off to do traffic control for the SES at 7am. He wasn't too thrilled about that.

So another week begins. So many things I want to do, and I'm sleeping more, or so it seems.

I keep all the comments from this section of the blog. They're available as part of the 2012 past updates. The comments are an important part of the archive. To me anyway.

Comments May 6 - 18

·  Joan May 6, 2012 10:46 AM
I'm going away on retreat today, for a week. I'll say some more of those prayers to that nonexistent god as they seem to be working a bit. I'll put in an extra request about that arm of yours.

Even for those of us without a Brian, the noticeable deterioration in photos and mirrors is shocking, especially for women after menopause. The odd thing is that the bit that I identify as "me" hasn't changed in 50 years. It's still the same me looking out of my eyes today as looked out of my eyes when I came of age at 13 or so. They say that the Self is eternal and I wonder if this common experience has something to do with that conclusion. Everything changes, but something is not changing, and I can't quite put my finger on it, but it does cheer me up when the mirror tries to trick me.

Have a good trip, Joan - any and all prayers, supplications and invocations welcome. Glad to have any help. A week in the śūnyatā should help, but don't wear an 'at,man! You must admit that's anatta good idea of mine.

Keeping away from mirrors altogether is, I find, the best solution to delivering us from dukkha.

· 
Hi
What an interesting dream.It seems to say that it is easier to stay in the plane than to take on the problems of trying to escape, thus maintaining some modicum of control over what you know. I suppose it is bad enough putting your faith in a dodgy parachute (Avastin)without adding to the list.Karl Jung would have said that the symbol of the plane ,ie, up in the air, means you are living in your head and not able to escape from that intellectual plane (ha ha joke!) If you were stuck in your unconscious you would be in a submarine.
Best wishes
Liz

Sorry I didn't reply to this earlier, Liz. It's an intriguing interpretation and my own wasn't that far from it in some ways. The plane to me is life when things get very sticky, and the parachute – well, whatever makes the landing softer.

What do you think of them apples?

If that's what you think, then that's what it is. Jung always said that the dream belonged to the dreamer. He had a thing about vehicles being the person and up being the conscious mind and down being the unconscious. Best wishes
Liz
  1.  
Fascinating. I'll go along with him this time [for the ride? :)] To me, Jung as a man is quite an enigma. Full of contradictions, though his most ardent admirers [this is a general comment] regard him as a god, or very nearly so. So I call it an instinct, and thus risk bringing down upon my head the entire psychoanalysis of instinct from some Jungian devotee!

PS It's always a plane, never a sub. My sub is an MRI capsule, as I said before. But I do think the subconscious works overtime in my dreams....

yes Jung is quite strange. I used to be really into him, and even had a Jungian analysis which lasted 6 years. Don't know if it did me any good but I think it helps you spot your own and other people's defences and so on. These days I'm more into biological explanations for things of the mind, but at the end of the day, who knows? as for instinct, I'm not sure whether you mean biological drives like breeding, or intuition, which I reckon is merely unconscious reasoning which people tend to give some paranormal meaning to. I suppose if we had to think consciously about everything we'd have no time to watch TV or read books, so maybe our dreams give us hints about what needs conscious pondering. If it's always a plane, then maybe the message is you are living too much in your head. After all, one is trapped in a plane, you can't get out, because of the altitude. At least you can get out of an MRI, which is good, because they are horrible.
I have started a new job and I have a patient on Avastin. I will be watching her progress with new eyes thanks to your observations on the effects of this drug.
Best wishes
Liz

· 
Hang in there Denis. Your blogs, not least 'What's New' give us all pause for thought - thoughts for you; thoughts about ourselves.

I had an MRI a few years ago. The nurse offered me a tranquiliser. 'Nonsense," said I. "Claustrophobia doesn't worry me." So in I went, like a torpedo into its tube. The door clanged shut and there I was, sealed in and helpless.

"Suppose I get cramp," I thought ... but then, I can always press the panic button. "But what if there's an earthquake, and the operator leaves the building - by way of the stairs. I could be locked in here for hours."

Panic began to rise. But there was a soft warm light shining on my upturned face, and a current of air moving around me. I closed my eyes and tranported myself to a remote beach, feeling the sun on my face and the sea breeze moving through the palm trees. I breathed deeply and relaxed. I continued in this meditative state until the door suddenly opened and I was free again.

So that was my recipe for survival ... and you know what? Next time I'm going to swallow as many tranquiliser pills as I can get out of them!

That could be helpful, Bob - the mental transportation, I mean, though it's a bit hard wearing earplugs and hearing this faint flat voice giving you the same instructions you've heard many times [if it is many times].

My fear at first was that I might have a seizure in there, set off by the stress, because it would mean I would have to do it all again probably – and the extra stress might set off another seizure.... etc. making it worse. A vicious circle I didn't want to enter at all.

Anyway what I'd do the first couple of MRIs was calculations. I knew I'd be in there 45 mins at least, with pause after 5-10 mins to extract me to inject the dye for the imaging. That's a long time when there's nothing else you can do. So I focused on breathing very regularly, counting the breaths at so many per minute [I think 10 or 12 – it's been a while] so I had a minute count, and then break that into goals reached – 10, 20, 30 etc.

It was a counting meditation in its way, and the discipline of it helped. Still, 45 mins can seem an eternity, but once the mystery of the process is gone and you get used to the grinding and clanking you can hear through the earplugs, it's a lot less disturbing.

There are some, like Carl, I know, Joan, who agreed to do one as an experiment with identical twins, not because he was ill - and he just couldn't complete it because of the claustrophobia.

I have some ideas to improve the process that they may already apply elsewhere. In the meantime, it could be back to deep breaths... and counting.
  1.  
I'm claustrophobic. Until recently, I even had problems being in a lecture or picture theatre! I'd take the tranquillisers too, Bob. I like your visualisations. Denis, you're a hero, as always, xx. However, a lot of heroism is common sense!! I'm learning to have a little more control over my panic button. You were saying you might have another MRI soonish?

Julie
  1.  
PS I always want to know what you're reading on your kindle! I love reading so much that I always want to share other people's..I'm reading 'Dreaming in Hindi' about a woman who went to Udaipur to learn Hindi through 'immersion'. And my book group just read the brilliant 'The Cat's Table' by Michael Ondaatje. :)

I do understand claustrophobia, as my 'worst way to die' scenario always was to be trapped in a space barely bigger than my body say deep underground and have no chance of moving in any direction to free myself. [Mind you, I've come up with a few worse ways lately, but let's not go there.] But claustrophobia's a state of mind [surprise!], like so many others, that you can turn around.

Julie, do go to the site below – yes, I don't have enough to do without taking on the entirety of Gutenberg – and look at these:

In Kali's Country
http://wrightsgutenblog.blogspot.com.au/2012/03/my-real-blog-my-gutenblog-home-previous.html

Indian Fairy Tales
http://wrightsgutenblog.blogspot.com.au/2012/05/indian-fairy-tales.html

Kashmir
http://wrightsgutenblog.blogspot.com.au/2012/05/kashmir.html

... and there are other books newly released on the general site you might like to look at. I know you don't have enough to do....

http://wrightsgutenblog.blogspot.com.au

As to what I'm reading on Kindle, I've just read, following Henry James's The Turn of the Screw, Lloyd Jones's Mister Pip, which was fascinating, but I never read one at a time, so I'm also re-reading The Tale of Genji, Zen and the Art of Motorcycle Maintenance [which still has its moments I found], Bertrand Russell's Mysticism and Logic and Other Essays, Hans Anderson stories [back to childhood!], and the McCarroll version of the Tao te Ching which I never read before but is very similar to the Gia-fu Feng/Jane English one and one on funny 'curious' epitaphs in English graveyards.

And a couple of others depending on place, time and mood. The Kindle stores exactly where I left off for each book so I never get lost. I'm still fortunate to have one of those brains that allows me to pick up from the last words read in any book as if I hadn't stopped.

NOW I will have some breakfast. You shouldn't have got me started on the Kindle. Bad woman.

· 
PS I don't think you can say you've really mastered another language until you dream in it. I've never heard of The Cat's Table but it sounds good.

· 
Julie: re MRI - yes, we're contemplating it. It's probably about time we saw what the score really is. Unlikely to be before two months though - if it's required. No matter what it tells us, it probably won't change the treatment plan. For a variety of reasons I'm not prepared to do surgery again.

Thursday, 3 May 2012  2:10 PM.

It's been another wet day here so far. It's definitely not a day for walking. We've been to the podiatrist for a foot clinic just to get everything with toenails and feet generally in order. She's done an excellent job. The last sorts of problems we need are unnecessary complications caused by preventable things.

I woke early, as you can see from the main part of the blog if you've been there today, felt very tired so went back to bed and slept. Rain on the roof probably adds to that desire to be in a warm bed. The only thing that made me get out of my lethargy was the podiatrist appointment.

My memory is so shot that I forgot to almost forgot to mention that I had a minor seizure on my birthday; in itself not a big issue, but symptomatic, as always, of the fact that the tumour and its detritus lurk in the background.


Wednesday, 2 May 2012 8:50 AM.

Outside, it's a beautiful late autumn day – a perfect day to celebrate a birthday. We'll put aside the negatives for the day and I'll simply be grateful to be here to share it with you.


Sunday, 29 April 2012 8:18 AM.

One-third of the year 2012 will be gone tomorrow.

Summarising the week: not so bad. I had a total of four Panadol in the week - an Avastin week where it seems things are more likely to be up and down. I daresay for many people leading normal lives, that number of analgesics wouldn't be much different. They do seem to be remarkably effective, but fortunately I have needed to take comparatively few.

We haven't walked much because of the inclement weather, but it's sunny today. I found my last walk was hard going. Without Tracey's arm, I suspect I wouldn't get round it without have a too-close conversation with the footpath. I feel that motor coordination generally is declining. Well, I guess that's obvious enough from what I've been saying in the past few weeks. [Months?] If we didn't already know the cause of this, I'd say we'd think it was the onset of motor neurone disease. It's not, but there are parallels.

Comments for the week:

Anonymous Apr 24, 2012 03:34 PM
Hi
I read the posting - assumed you were right handed! Perhaps another theory could be if the tumour is left sided then the interference to the pathways from your motor and sensory cortex travelling to the right side will be affecting the nerve supply to that right arm, making it more vulnerable to the vascular effects of Avastin and Clexane.

I also read your conversation with Brian. What comes through loud and clear is the anger.
best wishes
Liz
Denis Wright Apr 28, 2012 04:15 PM

Liz: sorry I didn't respond to this earlier. Your comment about nerve supply makes a lot of sense. It's the best explanation I've seen so far.

Your comment about anger made me think. It has a kind of resentment there, given that our lives have been turned upside-down by these events.

In particular I loathe what it's done to the life we used to lead, especially to Tracey's. It has put so many restrictions on her, and the fact she never complains only makes my resentment of the circumstances in that respect deeper.

Yet in other ways – and Tracey said this as I was thinking it – what I haven't really felt is anger. That's an emotion which is destructive in a lot of ways. A deep sense of loss, yes. It's one of three things new things on the agenda to write about, apart from the other sixteen.

After all, writing about it is where I sort things out in my mind. The fact you get to see it is an accident! [I jest... I think.]

Many thanks for your thoughts.

Anonymous Apr 29, 2012 04:53 AM
Anger, it leads to the dark side. 
Guess who's been reading Star Wars books.
lol

Dee

Denis Wright Apr 30, 2012 09:04 PM

Star Wars philosophy, especially Yoda's, often strikes home. It's straight out of Buddhism of course. You could be reading worse things!

Anonymous May 2, 2012 05:59 PM

Whew.
I've just ordered 35 more Star Wars novels.

Dee

Suzie Shapoozie Apr 29, 2012 11:30 AM
I just popped in to keep an eye on you.

I like visiting your blog. It slows me down a bit & gives me a chance to reflect on some of the noise that rattles around in my head. It's a strange thing, this cyber-community & the bonds that we can draw from it.

Anyhow, hope this week will be just peachy for you guys :)

xxx
Denis Wright Apr 30, 2012 09:14 PM
Thanks again, Suzie. I hope you find the latest main blog entry entertaining – the one on May Day. May your week be fruity as well! You are right about the cyber-people [that sounds like something out of Dr Who] – it's amazing what can be got out of it, whether people sharing illnesses, or caring for those who have them, or shaggy dog stories, books, articles, and the four seasons. Life's rich [and clichéd who cares?] tapestry, huh?

Anonymous Apr 30, 2012 03:12 PM
Hi

Forgive my observations on your emotions - 30 years of working in psychiatry has led me into this habit.I am not a fan of the Kubler Ross stages - people think they are abnormal if they don't go through them -I agree that anger is destructive if not processed and expressed productively. I suppose that's why Kubler Ross regarded it as a stage to gto through on the path to acceptance. The problem with anger these days is that it has become socially unacceptable in some circles, to the degree whereby people displace it, say, for example, by giving sentience to a disease process and venting one's anger at it. Nothing wrong with that. People mostly think that the "cancer journey" is all about documenting emotions - your documentation of the physical side is something I have never encountered before in all these years as a nurse. It is really interesting - I have become quite addicted to this blog - strange, because I have never looked at a blog before.I hope you have a good week and enjoy the beauty of Armidale at this time of year.

Best wishes
Liz

    Denis Wright Apr 30, 2012 09:44 PM

    I agree with so much of your comment. What I've learned above all else is, every case is different. To look for generalisations is the job of the researcher crunching numbers rather than someone with emotional input.

    I was very interested in your comment about what I'm documenting, because I hope that a researcher trying to isolate commonalities will get some more objective data out of it.

    As you say, no problem using a blog to open up to feelings, but it may be that someone researching brain tumours or other cancers can get clues I'm giving through the physical data – even though I may not be aware of the clues I'm providing.

    I think you know what I mean. The point is, the two 'halves' of this blog go together; i.e., the medical and all the hundreds of thousands of words of the rest. [Yes, that many.]

    Sometimes I wish I'd started earlier and put down even mundane stuff, like what I'm eating, the weather; things seemingly irrelevant but which coincide with certain events. Something I say may turn out to be an unexpected key for a researcher [or someone like yourself] – even to show how long I can go on intellectually when seriously handicapped in other ways.

    Anyway, more on that another time. Meanwhile, I'll do what I do as rationally as I can. Even if rationality slips and I continue writing, won't that be useful to someone? Though – and here's the rub – perhaps increasingly painful to others near and dear to me.

Saturday, 28 April 2012  9:27 AM.

It's raining again. That's a good opportunity to test my theory about humidity and ankle swelling. Yes, just as I thought; the right ankle and foot are up noticeably. There's definitely a correlation. A clear sunny morning with no moisture in the air, and you'd hardly know the difference - by which I mean, to most people, the area would look normal.

Other than that, I have nothing to report except for a clearer head after taking Panadol last night, and there's a whole new crop of spots on my right arm.

If the latter is the worst I have to complain about, then I'm content.


Friday, 27 April 2012  12:08 PM.

It's overcast yet again today, and cold. It's not a day for walking. I can't risk a chill so I have been doing some indoor exercise. I woke with a hangover effect - achey head, but not severe; just constant. This is typical of a few days after Avastin, and will persist until I get as much of whatever is in the brew out of my bloodstream. Hopefully the right amount will remain in my brain for the remainder of the period till the next one on 15 May. I feel lethargic and eyesight is blurred. This will probably right itself after I sleep. Sleep is good therapy. I think all up I'm sleeping longer.

There was blood on the pillow this morning. I don't know where it came from; probably some scratch from a fingernail as I slept. Other little wounds have healed at last. 

I try to be extra careful as I walk, especially if I've been sitting too long in one spot. I've had a couple of near-misses because of balance issues, and I don't see how this is likely to improve in the longer term.

Otherwise.... steady as she goes.


Wednesday, 25 April 2012  1:18 AM.

Just reporting that the Avastin hit went very well. I had a long sleep afterwards [which is why I'm still up, but I won't be for long.] Some feelings of nausea after waking have dissipated and I hope not to encounter unusual problems in the next day or two from the immediate infusion effects.


Monday, 23 April 2012  8:12 AM.

All quiet on the battle front. The uneasy truce remains in place between me and Brian. A dose of Avastin for Anzac Day tomorrow might put him an uncomfortable but soporific place, for the moment at least. Till then, no action.

I hope that the day will be nice, and we'll walk. I have no headache, and my head feels clear enough.

7 comments (Click!):

  1. Bob LakeApr 21, 2012 05:25 PM
    Thank you for the update Denis - we check your progress daily. Another beautiful autumn day for you down there in Armidale, no doubt. And for us up here. Believe me, we make the most of it. What can I say? Hang in there; we are with you in thought. Love to you both. Bob.


  2. Replies























    1. Denis Wright Apr 21, 2012 10:29 PM
      Thanks, Bob. Regrettably I've had to add a new update since you read this one [ignore Blogger's claim as to when you wrote – seems nothing on earth will allow me to change comment-time from that of somewhere in the US!]
       
    2. Denis Wright Apr 21, 2012 10:42 PM
      See what I mean about the time, it's Sunday, 22 April 2012, Blogger, and 3:42 PM. – not Saturday 21 April 10:42 PM!
      Delete
  3. Anonymous Apr 21, 2012 06:55 PM
    I suspect it is the limb you use most often. this happened to me when I was having chemo, mostly on my right arm. one bumps and hits one's arms more than one notices. Good luck with the Avastin.
    Liz

  4. Replies























    1. Denis Wright Apr 21, 2012 11:30 PM
      Good try, Liz, and a thoughtful one, but no, that's not it in this case, as you'll see.

      I am truly grateful your suggestion, because it gives me an overdue opportunity to explain some things which will come in a separate posting, and I'm working on that now.

      I'll post here a link when it's finished.
    2. Denis Wright Apr 22, 2012 07:13 AM
      That link to the blog posting:http://deniswright.blogspot.com.au/2012/04/medications-battle.html

Sunday, 22 April 2012  3:05 PM.

NOTE TO SELF: Never again make a comment on the time period post-seizure.

Barely two hours after writing the previous posting, I had a seizure, mainly of the arm. It wasn't a large one – about a 3.5 on my PRS, and had such a tiring effect that I've been asleep ever since.

Physically, I will recover from it fairly quickly if there are no more, though at the moment I feel like 20 kgs suddenly have been added to my bodyweight.

Mentally? I guess we'll see.


Sunday, 22 April 2012 8:37 AM. 

It came as a bit of a surprise to me that I hadn't been to this page since last Wednesday. It's now weekly roundup day. Fortunately there haven't been too many surprises on the health front. We don't really need any of those.

In the longer term, I should acknowledge that it's been almost the Biblical forty days since I've had a significant seizure, and that has helped both psychologically and physically. The good weather has helped to let us walk and that plays a good role. The feet and right-hand swelling seems to have subsided with the lower humidity. I'm going to keep an eye on that correlation - if there is one.

In other ways I've been exercising consistently if not hard, and I do think that pays off. I realise that the right arm can do some things it couldn't before because of increased strength, but in other ways it's less reliable. It's more comfortable, let's say. Balance remains an obvious issue, and I believe speech is slightly affected, especially the sibilants. That comes and goes.

The down side is that the psychological battle has entered a new phase. Things don't and can't remain static. I'll write more about that shortly.

In the meantime, the 'bloodspots' on the skin are fading, but that will only last until the effect of the next Avastin shot on Tuesday makes its presence felt in that way. I remain puzzled as to why it is the limb most seriously affected.

Fading spots and swollen fist


Wednesday, 18 April 2012 9:55 AM.

Mid week already, just like that. I've nothing I want to report on the medical front, apart from brain fogginess and a desire to sleep more, thus crowding the wake time all the more with all the things I want to do and enjoy doing.

It's staggering to think I'm just a week away from the next Avastin infusion. Six days actually, because of Anzac Day on Wednesday, so it will be Tuesday 24th.


Monday, 16 April 2012 10:18 AM.

Nothing worth reporting. I went to bed later than I should but slept till later, so I got just the same amount of sleep. The only regret about that I have is that half the morning's slipped by already. But all is as well as it can be for the moment.


Sunday, 15 April 2012 7:20 AM.

Weekly summary time. I had hoped to report that I hadn't had a seizure since 15 March, and the good run was continuing, but the peace was broken at 1 am on Saturday by a mid-strength seizure just as I was about to go to bed. It lasted only 2-3 minutes – about 4.5 on my PRS.

I was the only one up and knew I wasn't going to make it back to the bedroom before it struck. Usually I lie down till one's over in case it gets severe. They almost always come on out of the blue. This time I decided to experiment with standing up, chair nearby, and seeing if there might be any difference. The short answer is, not really, for something comparatively mild. The risk is that it might have got more severe or not stopped – you can never tell.

It's set me back a bit physically but not that much. I always have to remember that it changes nothing in the right side of my body; just the processing of brain signals that give this illusion. Whatever has to be mended for recovery has to be done up here, in my brain. When the effects are so physical, it's not always easy to remember that just as long as sheer physical strength is retained, and that's only done by keeping the exercises up, regardless of poor performance.

Naturally it's about psychological effect. It was a full 31 days since the last. Looking positively there's actually been a slight lengthening of the time between seizures over the past six months, though their severity has increased. But getting one is a reminder that the indicators are that it's not going to go away and I shouldn't expect anything other than that – just to deal with it.


Thursday, 12 April 2012 8:43 AM.

In the last few Avastin cycles this seems to be the start of the physical 'cruise' period, where limbs ease in their movement and stability either improves a little or gets no worse. My right foot has no swelling. I am sure that swelling in feet and right hand have a connection with weather and season; warmth and humidity. 

I'm doing as much exercise as I can in the time I allow for it and am remembering to stop more; i.e., stop sitting and typing or reading at the computer and build in a little exercise period every hour or so.

The respite from seizures continues. I am free of headaches and sleeping well.

As Henry II was supposed to have said under rather depressing circumstances in 1183: "We're all alive. For all I know, that's what hope is." The Lion in Winter.

Winter is on its way here in Armidale, that's for sure!


Tuesday, 10 April 2012 8:12 AM.

It's a sunny day, a sneaky breeze from the west to remind us that the mercury went down to 3° this morning, and Alice and Sylvia will be off on the plane today; back to Melbourne. These partings are never easy, especially under the circumstances. It's been great to see them looking super trim and fit, running with Christian along the cycle paths to the university. The autumn leaves are falling in an endless stream from some of the trees.

On the medical front, there's nothing noteworthy to report. The back of the right hand looks like it has large birthmarks on it, reminding me of the days when birthmarks were not so easy to remove if people wished to see them gone. They may as well be temporary birthmarks, as they are painless and will be there for a couple of weeks, and then slowly fade, leaving what looks like a pale scar, like all the others. I think this is a combined side-effect of Avastin and Clexane, as the skin is sensitive, and I must have bumped up against the table as I sat down.

I've just sneezed a few times as often happens in the morning, and there's fresh blood on the tissues; rather too much for my liking. This happens with increasing frequency too. Another related side-effect of the condition and treatment. It reminds me that other body cells must be increasingly delicate and I have to redouble my alertness to avoid little physical injuries where I can. Others have to take their chance.

My right arm has increased strength but strength that's hard to direct. It's helpful in some situations to have it, as it seems to give more control over the large tremors when they come. It's useful that the right index finger can be made to press a particular key on the keyboard for some operations involving both hands.

It's clear that functions can be relearned as long as the seizures stay away. Let's not jinx it by counting days, but it's been good....

The girls are breakfasting before going to the airport. I'll sit with them.


Comments 31 March - 15 April:
  1. Anonymous Mar 31, 2012 12:59 AM
    I am glad things are going steady as she goes for you,even little improvements are good.I myself had a health scare this week,really sharp pain behind right eye that wouldn't go away,so had to have scans for anuriums as i have had 2 before but turned out to be a very bad sinus infection thank god.I pop over here to see how you are doing and when you mention exercise you put me to shame as i should be doing some.Keep up the great work and take care.
    jayne
  1. Denis Wright Apr 1, 2012 05:40 PM
    I'm very glad it's nothing you won't get over. Unexplained aneurisms should always be checked. Fortunately in a way, pain round the eye area may have many possible explanations. It's the ones that don't pain that could be the ones you really have to watch out for.

  2. Anonymous Apr 3, 2012 06:57 PM
    Hi Denis
    I have come upon your blog by chance - I am a member of an on line discussion group about the Left at UQ in the late 60's and 70's and some one discovered your blog with picture of Brian Laver etc and alerted us to it. I remembered you as I was one of your students - History of Asian Civilisations - and I remembered you because you were incredibly nice to me. Doing your subject changed my life by introducing me to Taoism and Buddhism which have provided me with a framework for understanding what I previously never could.I remain a Buddhist to this day and I don't believe I could have survived without this sustaining belief system in what has been a difficult life. I am sorry re your tumour - I know what a business cancer is, I've had it also, in remission now but you never know. The treatment is so dreadful but you seem to be filling your days with productive and meaningful activities. I'm glad to have come upon your blog because I have always remembered you for your kindness.I hope you are happy and receive all the comfort you deserve. I doubt that you will remember me - I was one of those dreadful radicals and did tend to stand out in a crowd at that time! Best wishes,
    Liz Phillips


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    1. Denis Wright Apr 4, 2012 02:03 AM
      Liz: it's great to be in touch again after 40 years, though it would be nicer if it were under happier circumstances. I'm happy to recall those days, which were very vivid and life-changing for me – the political events of the time and the courage of the 'ratbags' whose honesty and dedication eventually proved to be right to the rest of the country.

      I also remember you personally very well and I knew that you were going through troubled times even then. Given my age at the time you can be only 6 or 7 years younger than I.

      I'm very glad the approaches of oriental philosophies based on rationality and compassion are as sustaining to you as they continue to be for me. I hope very much for the remission to continue. We don't always realise it but we're all always in a state of remission one way or the other, and that's not a negative comment. It just means Carpe Diem!

      Please keep in touch.

    2. AnonymousApr 6, 2012 02:26 AM
      Hi
      have you considered alternative therapies I found homeopathy helped a lot. Also Charlie Teo in Sydney is noted for attacking brain tumours which other doctors refuse to touch,he is an amazing neurosurgeon - have you heard of him?
      Liz

    3. Denis Wright Apr 6, 2012 09:47 PM
      Hi Liz, yes; for 2.25 years we [especially Tracey] have researched the hell out of this condition from every angle.

      I've written about Charlie Teo on this blog. I agree that he is a fine surgeon from what I understand, and I would trust him if I regarded further surgery as a good idea [and of course if he'd take me on, though I've other excellent neurosurgeon contacts as well]. We've considered all the options and discard none out of hand. In matters of life and death, one doesn't take options lightly....

      Your question makes me realise there are so many people now looking in on this blog who can't possibly know the full background to where we are now that it's probably time to sum up what we do and don't do, and why. Thanks for making me think about it.

  4. Joan Apr 7, 2012 05:34 PM
    Denis, I'm so overjoyed that you are celebrating another Easter. May you continue in your current state of resurrection/remission.

    As for your memory. You expect too much from yourself. Several years ago, when my memory began to have holes in it, I decided to do some little tests to keep it sharp. Instead of a bookmark, I memorised the page number or the book I was currently reading. I still remember that page number even today. Page 145. Problem was, I couldn't remember what book I was reading. True story.

    Be kind to yourself. I recently read in the New Scientist that as our brain ages, we think differently. We might not be so sharp in our memory, but our ability to think more deeply, see connections between things, and perceive wider patters and relationships improve. In other words, we become wiser.

    In your next life, you will be a woman, and you will know what it really means to start losing your memory in middle age.







    1. Denis Wright Apr 8, 2012 03:37 PM
      Joan: yes - I'm very happy to have been here for another Easter of the best weather Armidale can offer, and a dangerous cache of chocolate, fortunately most of which is dark and low in sugar. Dark choc is supposed to be beneficial in combating brain tumours, so who am I to argue?

      My memory can't be too bad, for I remember your telling me the book page story on another occasion! Had you not mentioned the page, there's a fair chance I would have recalled the exact one too. The brain's storage capacity is almost infinite, but some things it would be handy just to be able to discard entirely.

      As I've said before, it's all there, but what's declined is the ability to process it instantly or quickly, as Tracey rightly said when she'd read what I'd written.

      I'm sure the NS article has a lot of truth to it. I like the bit about becoming wiser. Now that has to be true!

      If to become a woman in the next incarnation is a step up the karmic path, then I'd better commit a few more sins and stay as a man, because I think I can handle that better now that I've gotten used to it.... There's a few aspects of being a woman that frighten the hell outa me.

  5. Joan Apr 8, 2012 04:50 PM
    Now, see what I mean. I'd forgotten I'd told you that story, and you remembered it.

    In some cultures, being a woman is most fortunate, for you are more deeply connected to the spirit world and get to inflict curses on men who don't do as you say. :)

  6. Joan Apr 12, 2012 04:56 PM
    That's great news, Denis. I felt disturbed by your comment on blood and bruising and then I wondered if that could be caused by the anti-clotting agent you are taking for your now disappeared blod clot. Carl is on anti-clotting medication for his "thick" blood, and when he first started taking it, he would bleed like a hemophiliac at the slightest cat scratch and often he would look as though I'd been beating him up, with black and blue splotches appearing seemingly for no reason. He reduced his medication and got that under control. Just a thought.

    AnonymousMar 31, 2012 12:59 AM
    I am glad things are going steady as she goes for you,even little improvements are good.I myself had a health scare this week,really sharp pain behind right eye that wouldn't go away,so had to have scans for anuriums as i have had 2 before but turned out to be a very bad sinus infection thank god.I pop over here to see how you are doing and when you mention exercise you put me to shame as i should be doing some.Keep up the great work and take care.
    jayne


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    1. Denis Wright Apr 14, 2012 03:54 PM

      That would be a scare. I'm glad it turned out OK. Unexplained pain is stressful apart from anything else.

      Exercise, even when the body is in poor shape [who, me?] is critical. My worst mistake in all this was not to keep what control I had at a time when there seemed no point. For any sufferers of neurological conditions, that's my big theme. Keep working on your body while/if you can! Otherwise it's a downward spiral.

    Joan Apr 12, 2012 04:56 PM
    That's great news, Denis. I felt disturbed by your comment on blood and bruising and then I wondered if that could be caused by the anti-clotting agent you are taking for your now disappeared blod clot. Carl is on anti-clotting medication for his "thick" blood, and when he first started taking it, he would bleed like a hemophiliac at the slightest cat scratch and often he would look as though I'd been beating him up, with black and blue splotches appearing seemingly for no reason. He reduced his medication and got that under control. Just a thought.
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    1. Denis Wright Apr 14, 2012 04:04 PM
      That works where you have more control and fewer variables. With a delicate seizure medications balance added to the mix, blood pressure control and the need for steroid to adjust organ function, the critical need to take clots out of the picture as far as possible, when the oncologist suggests not tinkering [after doing so with negative results] it seems the best advice. I just don't have much room to manoeuvre.

Sunday, 8 April 2012 7:03 AM. Easter Sunday

The week with Alice and Sylvia is close to over. It has gone quickly, which is hardly surprising given that every week now passes in a flash. We have walked around Armidale when it is at its autumn best. The walking itself has gone well as long as I have an arm to take. The ability to keep balance continues to deteriorate gradually and I find myself needing to be more careful when I walk alone.

The period of no seizures continues, for the moment at least. It is now a month since the last, though I cheat slightly there with February being a day short. There has been some increase in headaches and fuzziness, but nothing much. I am lucky to get away with having as few and as mild as I do.

In other ways I find things faltering somewhat. When we were playing a game of Yahtzee, I found it difficult to do the simple addition required. I look up at things I've written on the screen and I see I may have written a similar but wrong word to the one I was intending to use up there in its place. My ability to structure a sentence is not so sharp, in that I find misplaced phrases that need later correction in a sentence I am writing. Such things I would not normally do. Words with more subtle meaning come less easily to mind than ever.

I was surprised when I was reading something aloud through the week at how halting my speech was and how I couldn't manage to speak a single sentence without stumbling over a word or phrase.

These are matters to do with concentration and focus. To write a diary entry like this takes much longer than it did. But it is vital to do these things to keep the brain pathways open.

My sleep patterns have been all over the place in the daytime as I may wake early or late; but whatever happens, I seem to sleep about the same amount each day. I also find myself fretting inordinately over comparatively inconsequential or ephemeral things, as oldies do, and then I am wondering if in doing that I am missing things that matter much more. This is highly probable.

I'm reporting these things as clinically as I can. Let's see what the new week brings.


Thursday, 5 April 2012 7:18 AM.

The day before Good Friday. I've showered and eaten breakfast. Showering always tires me but it's good I can do it with no help – ditto for dressing. For some reason I feel tired; possibly the effects of the Avastin infusion yesterday, which went smoothly. I was pleased to see blood pressure and pulse were in the good zone, and that I had lost 1.5 kgs since last time, three weeks ago. The next is the day before Anzac Day.

At least so far I haven't repeated the experience of seizures within 24 hours of the treatment. The last seizure was 15 March. I won't start thinking about record-breaking runs, because history shows they all come to an end sometime within a month. 

My ability to focus seems to be weakening, and writing simple things like this takes longer. Words, phrases and spelling can be wrong or jumbled more than normal. I have to proofread more and more carefully to preserve the illusion that my mind is sharp.

But I have writing I want to do on this day, which is another we like to think of as a typically autumn one, and the trees are in full autumn dress.


Tuesday, 3 April 2012 7:27 AM.

Alice and Sylvia arrive this morning, so entries may be a little sporadic for a week. Or not, as the case may be.... No news is good news.

It looks like a perfect autumn day.


Monday, 2 April 2012  12:55 AM.

It's been a stable week with little to report. That's it! The best report possible really.


Saturday, 31 March 2012 8:41 AM.

There's a bit of sharpness to the air when I wake. If it's 7 am, which it often is when I do, then I notice it's getting darker - though I didn't wake till 8 this morning. Google tells me daylight saving ends here on 1 April - there may be some April Fools up an hour earlier than they need to be.

Me? It's been pretty much a cruising week. Apart from balance, about which I have to be ever-watchful, I think overall I've made slight improvements, with exercise and fair sleep patterns. 


Wednesday, 28 March 2012 2:26 PM.

Walking was good today (and my feet are now blissfully warm!) I've been strengthening the right ankle and concentrated on pushing off properly each step with my right foot. Not having to worry about balance makes it all so much better, and far less tiring. 

Nothing else. My oncologist report is here, if you don't look at the main section of the blog.


Tuesday, 27 March 2012 11:55 AM.

All quiet on the Armidale front. I have an appointment with the oncologist this afternoon, which I don't really expect anything dramatic from, as over the 4 month period since the last one, there hasn't been a great deal of change, except for a steady deterioration in some aspects. 

It took me a good while to do as I wanted to see if there was any correlation between Avastin infusions and seizures. The short answer is, there isn't.


Sunday, 25 March 2012 10:20 AM.

It's been a quiet week on the medical front; at least, nothing major has happened. We've been walking, and I'll write something more on that on the main blog, as we've changed our method of tackling some of the walking problems.

My sleep patterns have been a bit all over the place. I woke this morning a bit too early to get up and almost too late not too, but I was feeling tired. So I read for a while and was tired enough to sleep more. I didn't wake till 10 am, so the schedule is a couple of hours behind.

Hey but I'm here and my brain seems to be able to function reasonably, even if the right side of my body is less and less willing to cooperate physically.


Friday, 23 March 2012 9:11 AM.

Nothing to report. Is there a point in reporting that there's nothing to report? Not really. Assume no report means that nothing has changed significantly from the last one. Each day like this puts the last seizure further behind us.

It seems a beautiful day out there. No excuse for not walking!


Thursday, 22 March 2012 9:38 AM.

I'm feeling stronger, more balanced and stable physically, yet tired! I cannot stop yawning, yet I slept well. Perhaps all these consequences are from the walk yesterday. My head is clear enough.

It's overcast; rain on the way again. There may be no walking today. We'll see.

We have a routine appointment with the oncologist next week.


Wednesday, 21 March 2012 10:03 AM.

I feel more stable physically today. Some days it's like that and there's not always a pattern to it, though getting away from seizures for some days would seem an obvious connection. It just not that simple, but it helps; psychologically as well.

At the same time, my vision is blurred. Again there's no apparent pattern. Tiredness aggravates it, but there's no reason for tiredness today. I'm also making more typing errors, just hitting the wrong keys. I bless the check-as-you-type red underlining of mistyped words that one right-click usually fixes.

It seems a more pleasant day outside than it's been. We should manage a walk today. The leg exercises I've been doing seem to be increasing flexibility that way and that helps walking. Strengthening stomach muscles should also help in several ways.

Now to finish the final part of my 'four-bob' story! I wish the screen were not so blurry, but I don't really need to see it all that much.

The internet connection seems more stable too! It needed to  be.


Tuesday, 20 March 2012 6:26 AM.

Wow! We sure don't know how much we miss the net till it's well and truly down, and for the moment it seems to be holding.

All's OK on the medical front. That's more stable too! Though my sleeping patterns are very irregular right now. It doesn't mean I don't - just that it's even less predictable when I do.

OK - let's try sending!


Sunday, 18 March 2012 9:42 PM.

Weekly roundup: it's been an unexpectedly turbulent second half to the week starting soon after the Avastin infusion. A series of seizures made me feel somewhat behind the 8-ball, but over the past 24 hours I feel things have stabiised. The comparison to earthquakes is rather apt, except they are to do with me only and what must be happening in my brain cavity. Perhaps all will go quiet for some time, but the legacy of poorer mobility and balance remain.

Unsettled weather and the seizures don't make for enthusiasm for walking, but I've tried to maintain exercise in other respects. There's nothing more to say, really.


Saturday, 17 March 2012 8:30 AM.

As I write this (7:37 AM), the connection to the net is down, so I can only hope it resumes before long. I've had a day of instability with seizures, and things haven't settled down yet. I've had three aftershocks mainly involving the right arm and hand, but the finger twitching hasn't really stopped and the more I think about it, the more likely it is to happen, like a sort of Pavlovian response. So the least said the better. We'll just play it cool today. There's some nausea, not serious, and headache. Unaccountably there's also a tendency to redness down the right side of my body at times. Discomfort in trying to sleep on that side…. but it was OK after turning to the left.

We'll see what the day brings. I may have brought some of this on myself by overdoing it, reading and writing and even building a new blog site.

The router briefly indicated a connection and then gave up. I suspect a problem with the service provider this morning. It seems the day for it!

Ah! A brief window of opportunity. I mustn't waste it.


Friday, 16 March 2012 10:15 AM.

I'm feeling somewhat recovered today. I've resumed exercise and will walk this afternoon and see what real damage has been done to mobility and balance. Some days I simply do manage better regardless of any setbacks. It's just how things work out.


Thursday, 15 March 2012 7:00 AM.

Oh well. It wasn't going to last forever. 2.15 am jolted awake rudely by a seizure. Average size - about 7 on my personal Richter scale - a full right side body one.

I was lying on my left side when it wakened me and I did what I usually do - hold the clawing right hand fingers firmly with the left hand, waiting for them to stop writhing. It was going on for long enough to feel more uncomfortable than normal after the whole side took its turn, so I shifted to lying on my back. At the very moment of moving it stopped so suddenly I couldn't believe it was over.

I don't know if there was a correlation, as it stops suddenly anyway when it does, but I'll just keep that filed away. Interesting that it came less than 24 hours after the latest Avastin infusion. It's not the first time it's happened shortly after. Interesting too, to note in yesterday's entry something I had already forgotten - that fairly strong headache. 

The value of diarising carefully might yet be revealed. I can go back and see if a seizure was preceded by headaches. (So far seizures have simply defied any attempt at finding patterns of timing and always have.)

So King Canute cannot stem the tide and the carefully-built sandcastle of 36 days crumbles once more into the sea. The arm has regained some of its strength and there's nothing for it to start building again. I should be used to it I guess. Balance? Well, let's not talk of it.

It made for a less than comfortable few hours sleep and I was awake at 6 am.

Hey, I'm still here, and my body is telling me to eat something and take medications. It looks like an unsettled day.

Lyn, we hope your eye operation goes well today. When will this sibling rivalry in the medical area cease?


Wednesday, 14 March 2012 2:30 PM.

I've just got back from another successful Avastin infusion. It was just the way I like it - very routine, no dramas. I'll probably sleep soon.

I went to bed last night with a headache and woke with it, and it became quite strong while and after the Avastin treatment. I don't know why it happened, but it's easy to theorise. The main thing after returning from the hospital and taking Panadol is that it has gone, leaving me feel just tired.

We walked again yesterday. I found it easier than the previous time, when coordination was worse than ever, but I'd really run out of gas by the time we got home. 

Perhaps it's to do with the Avastin cycle. Balance remains the most serious obvious issue.

Now 35 days since the last seizure. Hang on.... right, I touched wood, bare pine. 

Superstitious? Me?


Sunday, 11 March 2012 8:15 AM.

Another Sunday has come. Another week has passed. I woke feeling very clear-headed. My right ankle has subsided to such a normal size that few would see any difference, though the ankle is slightly swollen. The hand is also, but as long as my fingers feel 'tight' - which they have since they were treated so cruelly on the very first day - then I don't see the hand ever looking or feeling quite normal. I think physical damage was done on that day and in the hundreds of seizures since, so it will always feel like the knuckles are wrapped tightly in lead.

BUT let's go with the flow and see what the day brings. It doesn't pay to look too far ahead. That much we've learnt.



Friday, 9 March 2012 6:35 PM.

Just awake after an afternoon sleep. This pattern has settled for some time now - a sleep later in the afternoon and energy after getting up. A lot depends on whether I've slept well in the nighttime sleep and when I've felt compelled to get up early in the morning. It's been round 8 am most mornings but never guaranteed.

So I've made it to 30 days since the last seizure. That's nearly twice as long as in any 3 week cycle since 3 May last year, when they began again after months of break following the first use of Avastin.

We had our flu shots at the Doctor's surgery today; always a great idea each year. He also recommended just continuing with Clexane at the same strength daily and not doing any further experimenting with stopping it. My feet and right hand are back to what we regard as normal. As long as I keep to routine I seem to do best.


Wednesday, 7 March 2012 8:35 AM.

I was pleased to see this morning that both ankles have returned to as near normal as they get, i.e., the left foot and ankle you would see as quite normal, the right ankle and foot slightly swollen compared with it. Over the past few days that hasn't been the case.

If you think this is some sort of overreaction or obsession, all I can say is that I regard the status of my ankles as a barometer of my circulatory system, and the effects of anything going seriously wrong with it could suddenly change everything.

I still can't be sure what causes the fluctuations. It may be to do with Clexane, or it may turn out that that is a red herring after all. It may be as simple as a reaction to weather changes. It may be as Joan noted as I was sitting at my desk last Friday that my chair was too high and that becomes an additional factor under certain conditions. (I have changed that.) Constant walking, even if not every day, may help. But I should add that the right hand also swells, so there's something more systemic in this. Today its swelling has also subsided and a casual observer probably wouldn't see much difference, if any.

Always, with diseases, there are are number of variables. It's easy to latch on to one thing and link a change with a change in just one of those when they coincide. You can jump quickly to the wrong conclusions, especially if you can't claim to have the knowledge and experience of a GP or specialist. Clinging to a wrong idea can have negative consequences.

You observe, and react, and try to optimise the positive. In a lot of ways, you and the person(s) closest to you are your best physicians.

Otherwise, I slept well and feel clear-headed. That's enough for now. I want to do things while I remain that way. It's a cool day and I mustn't weasel out of walking just because it's overcast and dreary outside.


Monday, 5 March 2012 10:05 AM.

Doing other things yesterday meant I missed a weekly summary, but there wasn't a lot to say. I am still hoping that we can reduce the Clexane and wait to see if we can avoid abandoning altogether the idea of giving my body a rest from it. The ankle swelling is back within the range of what seems acceptable.

I had headaches last night, annoying rather than extreme; and the night's sleep was broken. Some nausea as well, which has cleared. My head has not yet cleared but perhaps that will happen during the day. It is not aching, but there is fogginess there, so I'll keep this to a minimum. 

The unbroken period of no seizures continues. If it makes it to 8 March, it will be a calendar month. I can't complain about that.

Comments:

Bob Lake Mar 7, 2012 01:09 PM
Thank you for the continuing reports on your condition Denis - your Wednesday 7th 'What's new' contained as much philosophy as it did medical information. I particularly noted your thoughts on coincidence; how many times in life do we jump to conclusions based on the assumption that two separate functions are linked? I am always interested in your Gutenberg entries - I am just upgrading my eReader. Mainly I enjoy re-visiting the English Victorian classics - an era I would have chosen to have lived in (that is, if I were reasonably wealthy, of course). Best wishes.



  1. Denis Wright Mar 7, 2012 02:47 PM
    Thanks for your comments, Bob. Philosophy, I am coming to realise, is pretty much experience that you learn something from! Or at least, I suspect so, though it is often put more grandly (and grandiloquently!)

    Gosh, I sometimes wonder about living in the nineteenth century. Have you seen the movie Bright Star? (I loaned it to my mate Watto but he steadfastly refuses to watch it, on the grounds that the Victorians were all fluffballs - right, Watto?) But when I look closely at the brilliant reconstruction of Victorian life top to bottom depicted in it by the great director Jane Campion, well... I am not sure I'd want to live there, regardless of how wealthy I were!

Anonymous Mar 8, 2012 07:14 PM
Poor muscle tone will often result in fluid pooling

Dee


  1. Denis Wright Mar 9, 2012 08:43 PM
    True. Given the other circumstances and symptoms in this case, I don't think that's the real problem, but different things can play a part.

Saturday, 3 March 2012 9:00 AM.

Things have settled and all is going quietly. On the medical front, there's nothing to report, and that's the way I like it!


Friday, 2 March 2012 9:55 AM.

There you go. In the final paragraph of my last entry, I spoke of the pleasure of no Clexane injections. Barely had we stopped; just a day - when both my ankles and the right hand started to puff up. Not hugely, but the tight feeling of the skin grew and grew. I wasn't feeling good about this.

Nor could I be certain of the connection. I still can't, but the coincidence of the two events is very strong. All I know is that by last night, after two Clexane-free days, the tightness and swelling were concerning me. Finally just before bed, we agreed to shoot up with Clexane.

The effect was almost instantaneous. Either it's the Clexane or I have great powers of imagination, but through the night everything went back to normal. Slight swelling in the right ankle remains, which is par for the course, but the right hand and left ankle have lost that swelling and burning tightness.

So it seems I am also hooked on Clexane, after more than two years' use. Perhaps I can gradually decrease the dose over time, but for now we'll resume the shots. If being off it has this effect externally, then I have to consider what effect being suddenly off it might also be to organs.

We'll consult the GP of course, but if anyone reading this has had a similar (or different) experience with long-term Clexane use, please let us know. The first time we had a Clexane-free period, immediately after oral chemotherapy and radiotherapy in Melbourne two years ago, we didn't notice such an effect, but then I had been on Clexane only ten weeks or so.

Otherwise.... steady as she goes, shipmates.


Thursday, 1 March 2012 9:20 AM.

Milestones. That's what life is made of, isn't it? The first day of autumn, a new month, and a whole three weeks since I had a seizure. That's the equivalent of a cycle in my life, though of course it doesn't conform to the pattern of infusions. It's the first time in many months that I've made it through a whole three weeks without one.

But let me not boast. Things quickly fall about my ears when I do that.

Perhaps, like tectonic shifts, the double seizure three weeks ago gives me an extra period of grace. The comparisons with earthquakes is inevitable. Internal ones.

It's good to be able to go without the Clexane injections. I hope that lasts. In the meantime, it's a beautiful summer/autumn watershed day, and we will make the most of the calm while it lasts.

Julie Lake Feb 27, 2012 01:48 AM
I'm following the summaries with interest and concern...and thinking of you lots. Julie xxxxx

Bob Lake Feb 29, 2012 01:09 AM
Pleased to hear you are having some victories, no matter how small, Denis. It makes me aware of how relative is our existence; everything is judged in comparison to some other experience. May you continue to have more wins along the way. Cheers.

Tuesday, 28 February 2012 11:43 AM.

We have just been to Radiology and I had an ultrasound done on my leg, to see what had happened to that monster clot in my right-side groin, and it's gone (the clot, i.e., not my groin!) I guess 500+ Clexane injections have to achieve something....

I might be able to have a rest (especially my poor stomach) from the daily stabbings now.

Even small victories taste sweet.


Monday, 27 February 2012 6:40 PM.

I've not stuck to the plan to the past few days, even to the extent of not doing a Sunday summary, so a quick Monday one will do. There's not much to be said that won't repeat in some ways the brief entries I made last week. It's all swings and roundabouts. If I make it through to 29 February without one, it will be three weeks since the last seizure.

I woke this morning with two very twitchy fingers on the right hand, and thought that might well be the start of one, but they eased off and nothing happened.

The headaches I experienced through the week don't seem to have returned. Stress and tiredness are the greatest factors in this. On the negative side, a slow but steady deterioration in balance and general coordination continues.


Saturday, 25 February 2012 10:42 AM.

Feeling brighter this morning. Sometimes I think the Avastin infusion has a destabilising effect for a day or two, and then settles. We'll see how it goes. But the fundamental things remain.


Friday, 24 February 2012 10:35 AM.

I had a bit of a session with headaches last night. I woke this morning with some, but pretty low level. Showering and moving about always seems to help, and now I simply feel a bit blah and foggy. 

My balance and physical coordination are declining regardless of our walks and the other exercises, which is annoying. It seemed yesterday as if I had an extra 10 kgs of weight strapped on as I went up the hills.  

I also have to be extra careful walking past objects that I don't bump into them with the right arm as any contact invariably leaves a trail of red blotches that take a fortnight to fade. My judgment of these distances tends not to be accurate.

I'll make sure I get some sleep later and see how it all pans out as the day goes.


Thursday, 23 February 2012 9:45 AM.

The week careers away and the weekday workers will be looking towards the weekend.

The Avastin infusion yesterday was pretty much a breeze; one of those times when everything went right. It makes a big difference when all chairs aren't filled and the staff aren't overloaded.

I woke early, brain full of great stories in great detail, one after the other, just waiting to be written. I suspect a positive by-product of an infusion is this suddenly-boosted facility for thought, and that makes me want to leap up and write it down before it all disappears. That sometimes is so frustrating; on the edge between the story in my head and the need to write it down before the Man from Porlock principle intervenes.

By the time I am here, the Porlock man has left a rather tattered package. Most of the contents I'd hoped were there are missing. I've salvaged a few thoughts though.

I broke out in red patches on the arms within hours of the infusion, but they seem to have settled overnight, and there aren't any more. There are no other visible effects.

Because I did get up and scribbled down some thoughts, I haven't exercised indoors. I'll try to do that before sleeping, as well as walking, but time is getting away.

My early morning brain activity probably means an early sleeping period today. The more things are fairly strict routine, the better. Let's see how it turns out.



Sunday, 19 February 2012 9:40 AM.

I see, with some shock, that my last entry was halfway through last week. Time continues to speed up; exponentially, it would seem. [Insert all clichés about time passing here].

On the face of it, there's not much to report for the week. My body has stabilised after the damage from the seizures half-way through last week, but at a lower state of physical coordination, strength, and balance. After one bout of headaches there have been no more to speak of. I have some concern that the swelling in the right ankle and foot in particular now seems permanent. It's not all that obvious, but in spite of the Clexane injections daily, its presence suggests that blood circulation in the right leg is deteriorating. The last seizure certainly gave it a good going over.

The next Avastin hit is on Wednesday. They seem only a week apart in time, or two at the most.

So far, so good.

Wednesday, 15 February 2012 10:10 AM.

I'm having restless nights, dammit. I can't put my finger on just why, because there are always too many variables. There tend to be minor tremors in other parts of my body; especially annoying when I'm just about off to sleep. Sometimes I think it's to do with changed brainwave patterns at the point of going to sleep.

We continue our walks, which is good. We go the full distance. I'm fine till I get home, but when I stop I certainly take a while to recover.

I'd dearly like to lose some weight. That would help, as it would with balance, which is a continuing problem. By dinner time at night, I've eaten a weetbix, some fruit, maybe a salad or sandwich for lunch. Night-time meals are normal; no dessert. When people come to visit, I might eat a slice. A plain biscuit to eat with pills.

This isn't an unbreakable pattern but it's the norm. Maybe I should be more disciplined, but my weight has been constant for several months now. Of course, I can easily blame the steroids.

I'll just go with it. This is just purely to record information, by the way; not intended to elicit sympathy, which I don't need. In other respects, I'm doing OK.


Sunday, 12 February 2012 10:05 AM.

Another week gone in a blur; turbulent in the middle with seizures, slowly ironing itself out a bit by the end of the week, leaving some reconstruction work to do on the right side (if that's possible) and hoping for distance between seizures. I tend to be waking with head pressure and mild headache, but after some exercise, that usually lifts to some extent.

We should walk later, unless the weather stops us, but right now it's sunny and a bit windy. No excuses, I think!


Comments for the week

  1. Bob Lake Feb 8, 2012 01:37 PM
    Have just read your link to 'Brian'.

    Them's fighting words, Pardner' and I would have thought Brian might have been suitably intimidated. Not so, but you certainly slowed him down and reduced him to his proper place in the scheme of things.

    Don't ever let him think he is ever anything more than that which you so well described. Keep it up.
  1. Anonymous Feb 8, 2012 06:06 PM
    Thursday: I'm flattened by this news. With you in thoughts -press on.

    Julie xx
  1. Anne Feb 9, 2012 11:31 PM
    Brian should just do as he is jolly well told!

Friday, 10 February 2012 3:35 PM.

We've been for our walk in the bright sunshine, and I'll sleep again shortly as the clouds come over. Things seem to be stabilising slowly though I am not fond of the tremors now and again in other parts of my body than from where I might expect them. These seem to be receding in number and strength.

I guess I am very conscious of them too, rather like the residents of Tokyo or Christchurch are about the ones on the macro scale that they have to deal with when they happen.

No-one knows when, or just where. Or for how long, or strong. Or how many. Or whether they presage a bigger event. Or just where they'll be when it strikes.

I sympathise with the earthquake people.


Thursday, 9 February 2012 6:00 AM.

I said yesterday I had overdone things a bit the day before, so I was careful yesterday to try to get things back into order. We walked a slightly shorter route, and I finished most of what I was writing, which will appear on the main section of the blog shortly.

I went to sleep late-ish in the afternoon, and as I woke I felt my right hand gripped hard by a seizure that gave it a good going-over, twisting and flexing the fingers and wrist more strongly than any I've had post-Avastin. The seizure went the usual path down through the right side and was hard on the each joint and muscle. There's nothing to do but wait till it subsides, which finally happened after about three minutes. Far from the longest I've had, but the strongest after taking Avastin in September 2010. On my personal Richter Scale, about 8 or a bit more.

I thought that would be it and lay there waiting for the temporary paralysis on the right side to pass, but didn't get a chance to tell if that was happening because ten minutes later another one struck, more or less the same as the first. It was stronger and a bit longer, and gave a lot more attention to the lower part of my body, especially hip, knee and ankle. It finished with a few very strong bursts. 8.5 on the scale.

It left me fairly shaken, because it suggests to me that Brian has decided he's had enough of being kept in check by the Avastin and has decided to renew the assault with more strength. The immediate effect has been nausea, headache (now gone), joint swelling, right side weakness, even poorer balance, lack of concentration, sporadic blurred vision, tinnitus, a stiff neck and temporary speech difficulty. With time some of these will subside.

Anyway, I woke this morning feeling a bit low, but determined once again there was no choice but to fight, so I did my exercises as best I could and will rest again soon. 

It's not the first time I have had two seizures in a row, but not of this intensity. A return to a very ordered existence is the only way to gauge what's happening. So far there's no point in changing anything else.

Taking Avastin is a Faustian pact, and the time comes when the price has to be paid. I muse on this yet again as I look at the skin lesions on my arms increasing in size, number and colour.

6:50 AM. This has taken nearly an hour to write. My brain has slowed to a crawl.


Wednesday, 8 February 2012 12:25 PM.

I've turned it into a topsy-turvy sort of week. My fault, as usual. I was determined to get something finished on Monday, so missed out on a sleep period I should have had. There haven't been any serious consequences from this except for being awake at the wrong times but not quite enough so as to want to get up.

It will sort itself out when I get back to routine. That seems so critical these days. Being out of it makes exercise seem harder and I can work up less enthusiasm for it. This period should be the best for keeping myself as physically strong as I can.

More discipline! (But there are so many interesting things I want to do!)


Sunday, 5 February 2012 10:30 AM.

Happy birthday, Sylvia!

I slept late, but went to bed late too. The sun is streaming in. It has made a difference to my mood, which was a little depressed last week because of the succession of days when we couldn't go out walking. It was good to do so yesterday. Even though it was a great effort and required a lot of concentration to make the leg do what I thought it was being told, I didn't do too badly. The last third of it I had to hold Tracey's arm for balance, though. Perhaps if we can get back into our routine with good weather this part will improve. The Tai Chi-like balance exercises continue, but I have to adapt.

The week really hasn't been a bad one, looking at things in due proportion. Using weights the strength of the right arm is improving, which makes a difference getting up out of a lounge chair. It will also help balance I figure.

I've put some distance between myself and the last seizure and that's always a good thing.

Friday, 3 February 2012 12:45 AM.

My daily rhythm of wake and sleep seems to be pushed constantly later and later, by which I mean I am sleeping the same amount of time per day, but starting later each time. So as a general rule, I'm waking later and going to sleep later. A shift to the right in the diurnal spectrum of activity, let's say.

The Avastin infusion went well yesterday. My walking is getting worse by the day, but perhaps when we finally do get some fine weather to walk outside, we can improve that. 

It's a constant struggle to keep mobility in the right arm. It seems more work is required daily to keep less strength and flexibility in it. I guess this is why the leg, and balance, are similarly disappointing - an increasing decline in right side physical control. 

It seems to me connected with short-term memory loss as the memory control centre is further damaged. The retrained areas of brain controlling the re-learned coordination are 'forgetting' at an increased rate what they've learned. This means that I must fight to maintain the true arm and leg strength on the right side even though they feel weaker. The commands are not getting through as effectively.


Wednesday, 1 February 2012 6:40 AM.

It's been a disturbed night, mainly, I think, because it's been raining more or less ceaselessly (or so it sees) all night - real rain depression weather, and I don't mean that in terms of mood, just barometric pressure! I was dreaming we were in floods in Calliope, Tracey and I, trying to get to the old house from Elvie's. We made it; but I haven't slept since about 4 am. I tried hard enough.

I've done some exercises, concentrating on wrists and arms, with weights, to try to assist in pumping up the veins so that they can find a reasonable one for the infusion later today. Right now they are sitting up nicely on the back of my left hand, but will try to hide away when the needle comes out. I'll do what I can, and probably fall asleep during the pumping of Avastin into the veins.

Otherwise, I'm as good as I can be. Not having slept properly, my vision is very poor right now. Usually it all picks up post-infusion. My brain is running on super-slow too. It's taking some time to write this - but pointless lying down.


Monday, 30 January 2012 3:30 PM.

A somewhat topsy-turvy day, caused pretty much by watching that grueling epic tennis match to settle the Australian Open. Nearly six hours! Brilliant play.

I expected to sleep late but woke early. I was having an anxiety dream, which is unusual for me. You know the ones where you are in some fairly impossible position and can't seem to see the solution. The day before I had one also. Silly dreams; you don't want to know - though together they would make a funny story.

What is surprising, I guess, is that it doesn't happen more often.

At least when I woke after sleeping some hours today, that didn't happen, although I do feel at the end of the cycle (which it is). I am very heavy and my balance is definitely getting more precarious.

It's insidious because the loss is quite slow, but seems unstoppable.

I'll make sure I catch up on lost sleep if I can. When it comes to genuine insomnia, Tracey is worse. I guess I can understand that too.


Sunday, 29 January 2012 9:40 AM.

There's not a huge amount to say about the past week. One seizure four days ago, the effects of which have been mitigated by time.

The skin on my arms, the right especially, seems very delicate now, and a lot of blemishes of one kind or another have emerged over the time since the last Avastin. 

The appearance of this doesn't concern me; it's not a matter of vanity. It just is a barometer of what's happening as the Avastin use over an extended period produces its side-effects. 

This is the price that must be paid for life-extending treatments that have deep implications over time for cell renewal and development. It's not a matter of choice once the treatment was started.

The next infusion is this week, Wednesday. The rate time passes continues to speed up. It seems like barely half a week ago that I was writing a Sunday report, and it will be February with the Avastin slug. 

We helter-skelter towards autumn and whatever it brings. 


Friday, 27 January 2012 3:55 PM.

The day has developed better than it started. I went to bed last night with a headache but took some Panadol and went to sleep. Taking it late at night tends to make me slightly nauseous in the morning when I waken, and this morning was no different.

I'm not keen on the foot puffiness. It's not bad, but it's there. I'm still on 100 ml Clexane daily so I wish it wasn't happening.

We walked today and I anticipated some problems, but there were fewer than I expected. We did the whole distance in the threatening weather and I felt less tired on getting home than I thought. If that keeps up then we might be able to add a couple of hundred metres to the route.

Most of the time, I don't feel like a seizure will come back. Only when I'm tired, and that's how I am not after the walk. It's late but I better have a little sleep.


Wednesday, 25 January 2012 8:35 AM.

As usual, it was too good to last. On Kay's birthday... an hour after going to bed, I had a seizure - about 7 on my Richter scale, so not the worst, but it has made me wake with nausea and dizziness and a weakness once again down the right side. It's disappointing to stand once again in the kitchen and find the right leg slowly collapsing, the arm weak and limp, and a tendency to list to starboard.

Even sitting in the chair, I have to be careful not to allow that list to develop any more than usual.

It's always depressing when you've been working on things, but what is there to do else? Just take stock, and hope that it means another three weeks' grace at least.... and move on. It could be worse. I can still do this.

I see it's raining on the Queenslanders again. Floods to celebrate the anniversary of the last lot.


Tuesday, 24 January 2012 6:05 PM.

Two days since the last posting, but no news is pretty much good news. The blood test analyses sent to the doctor revealed no problems; some tending towards the higher levels but only marginally into the red zones. There's not a lot we can do about that but to continue with what we are doing.

The weather has stopped us walking for two days now, but I'm doing other exercises. Nevertheless, nothing quite beats a walk outside on a warm sunny day. Most days when a lot of our families are sweltering up and down the Australian coast, we are in Uggs and a coat, as I am now.

How much shorter the days are already, more than a month past the summer solstice. We noticed on our walk on Sunday how the pistaceas are putting on the first show of bright salmon leaves at the tips of branches on some trees. Just a few. But autumn has begun.

For you in the northern hemisphere shivering in slushy snow, your spring is on the way. A way away maybe, but coming.


Sunday, 22 January 2012 10:15 AM.

Its being Sunday, I usually clear the page of the past weekly events, such as they are, and consign them to the archives. It hasn't been a bad week. Every uneventful week is in its way a good week.

From my log I see that the last seizure was 4 January. As much distance between that event and now is a good thing. I can but try to keep the momentum up; not that it's in my control. The weather has at last been more conducive to walking, and for that I'm grateful. It's a pleasant enough day today, if a little windy.

I have a routine Doctor's appointment this week. Some medical problems for Tracey remain unresolved in spite of several tests last week. The forthcoming stress test might provide some indicators.

Saturday, 21 January 2012 9:30 AM.

Nothing to report, except a good walk yesterday! Enjoy Saturday.


Friday, 20 January 2012 10:42 AM.

You know how if you stay up late one night your next day is pretty normal, but the following day, you sleep in big time?

That.

I feel like I'm two hours behind. That probably because I am. But all is OK. I needed the sleep, obviously.


Thursday, 19 January 2012 10:25 AM.

It's halfway through the morning and this update was what I intended to do first, but other things got in the way. ("Oh look - another ... shiny thing!")

That sort of mindset.

But it could be worse. I feel tired - possibly because I went to bed later than I intended. I woke feeling like I was going to have a seizure; the arm heaviness, a little spasming of the right hand. I lay still for some time, and then tentatively start to move the arm, stretching and testing it, and it seemed to right itself.

It felt on waking as if I had had a seizure while I was asleep. I guess that's possible. Things change. But the short story is that nothing really happened.

Tracey and I walked yesterday; the whole route. I have plans for extending it, but not yet. I get home barely able to crawl up the steps, so I don't think I am quite ready to add a couple of hundred more metres yet.

After a good sleep later, I'll feel more energetic. This is coming into the post-infusion period where I often feel at my strongest, though I've also had a seizure out of the blue about now in the cycle as well.

There's no use trying to predict these things or worry about them. That's entirely futile. Nothing could be more negative, in fact.


Tuesday, 17 January 2012 8:25 AM.

Happily, I have nothing to report other than that Christian and I went for a walk on a rather windy day, but we did the whole circuit, thus fulfilling our mission. My stumbling was minimal.


Monday, 16 January 2012 9:20 AM.

I do wish these grey, overcast days would end for a while - they're interfering with my walking! I think there have been three days this whole summer where I haven't needed to put on a coat and uggs to sit at the computer after doing morning exercises.

At least my feet seem to resist swelling in the cooler weather. I would like to cut down on the Clexane, but the old 'if it ain't broke, don't fix it' saying always comes to mind. Meddling with such things in my case is a serious business, as we've found before.

There's little new to report. I'm back to doing the arm exercises, and very, very gradually the right arm makes progress towards straightening out, even with the seizures. I even picked up the 3 kg weights again this morning and am doing a series of things with them - carefully. If I have no problems with that I'll up the number of reps - gradually.


Sunday, 15 January 2012 8:05 AM.

I think we have got over the worst of the hiccups for both of us from last week and I am feeling happy. It won't be until after the Stress Test that we may be able to lay to rest all the misgivings in Tracey's case, but I'm hoping that will be the outcome.

As it's Sunday, I've foregone my daily exercise routine (this has nothing to do with religion, just rationalising laziness!) and am being a slob. I think these breaks from routine do more good than harm. My toe is just about right and my arm has got over the assault from the 3 kg weights.

The blood tests from last week show that my Dilantin levels are right in the zone. An appointment with the GP this week will see how the others are. If there had been anything untoward he'd have let us know by now.

So, onwards and upwards. If the weather clears we may still go for our customary walk. I did much better on Friday than the day before.


Thursday, 12 January 2012 7:25 AM.

Yesterday's Avastin infusion is over - a failed attempt at getting a vein to work followed by success. It's not an easy task to find a good one and I'm glad it's only once in three weeks it happens. And no, it's not worth it to have a port inserted to do the task, if you're wondering. I'll just put up with the bee-stings as long as we are finding pay-dirt somewhere in the back of the hand or wrist.

I also had blood tests to measure a variety of things, so we'll know if there are any adverse results. I'm not expecting any but you never know. 

The air seems full of spores and pollens right now, making eyes itchy. The days are getting shorter and already up here on the Tablelands the signs of autumn are apparent. There will be more summery days, but the golden ash trees will soon start to change colour. It's crisp and cool this morning. Summers are short up here.

I picked up the 3 kg weights after I woke following a post-injection sleep, and found there were some things I could do with them that I used to do daily, like raising them to a crucifix position. Rather pleased with myself, I tried a few other things, with limited success. This morning the right arm is stiff and sore. I can't imagine why....

I'll go back to the 1 kg weights but not abandon the 3 kg ones. Being over-ambitious doesn't pay, but you have to test your limits.

My brain is slowing down. Yes, it is. It has taken me more than half an hour to write today's entry.


Wednesday, 11 January 2012 8:55 AM.

Walking yesterday felt good in the summer sunshine. We did slightly less than the full route, not to overdo things after a week's lay-off. That was a good idea, as I just made it. The sore toe is not preventing me from walking, though it is not healed. 

Balance is by far the biggest issue when I am walking anywhere. In spite of what I do to regain that fine motor skill, I feel it lessening day by day. Maybe I am not trying hard enough, but it's like building sandcastles on Bondi beach.

Today we do the Avastin thing for the first time in 2012; I think for the 25th time altogether. Generally speaking I seem fairly tolerant of the drug after some 16 months. In other respects I am coping reasonably.


Tuesday, 10 January 2012 9:20 AM.

There's not much to report that's any different at this stage. I'll probably make some comments on the difference between the GP's view of how things ought to have gone at the hospital and what actually did happen, but not now.

The toe isn't responding as fast as I expected, but I'll walk anyway, or compensate with different exercise. Psychologically it's worse to sit around than to do things!


Sunday, 8 January 2012 7:50 AM.

It's been almost a day of medical observation in this household. Tracey found it both prudent and necessary to go to Accident & Emergency department of the local hospital to get an explanation for a week of continuous arm pain. Some possible causes seem to have been eliminated from the suspect list, fortunately, but an explanation is not yet clear. That was a 5 hour session yesterday.

I've been fortunate in the past two years not to have had an infection; quite amazing really, but a problem with a toenail has turned nasty and the left big toe now feels and looks like gout episode that would impress Colonel Blimp himself. It escalated with such speed during yesterday that it seemed I was destined to end up by midnight at the same place Tracey had been half the day.

Normally this is not much of a problem, but infection for me in my circumstances is a danger not to be ignored, as it may affect treatment. Anything involving blood poisoning has to be treated seriously.

As it is, it's interfering with exercise. I need to get the foot up and to get off this computer, so till this is sorted I wont be doing anything fancy - only what can be done from the laptop, and with my foot up.

A trip to the GP tomorrow for us both is a necessity. In mine, I may need antibiotics. For Tracey, further investigation.

Food and medications time!


Saturday, 7 January 2012 11:00 AM.

I'm a bit late in posting today. I'm not feeling at my best, with my feet deciding to swell and remain puffy for some reason, and a continuing sore toe which discourages me from walking. I think I will just ignore that and walk anyway.

I still have the feeling that I am not too far away from a seizure. Other than that, no complaints!


Friday, 6 January 2012 8:50 AM.

Storms last night freshened the air and it's a fine day.

I have recovered somewhat from the seizure on Monday. Now, a sore toe is preventing me from walking, believe it or not - but maybe I'll simply ignore it after sorting the nail problem to make sure it doesn't get any worse, and get back on the road. I have to exercise. I think I'm starting to lose a little weight, not that anyone would notice, but the less weight the better.

I seem to have a stomach problem as well, but there's a bit of that going around.

My body feels a bit - how do I describe it? Jumpy.... But it's been that way since the seizure. Apart from that, nothing to report really. It's all very exciting, isn't it?


Wednesday, 4 January 2012 8:55 AM.

Things can change quickly. Less than an hour after the girls were waving from the train window yesterday, a seizure struck. On my Richter scale of seizures, it didn't amount to much - about a 4 or so, but I was shocked at the damage it seems to have done. I seemed to weigh a ton, my head felt about to explode, the right hand was next to useless, balance was even poorer, and the psychological effect greater than I expected. 

I went back to bed and slept till afternoon, but confess I felt no better for it.

Fortunately, I am writing this a day later, and I have put back most of the pieces. I don't think I'll be adding the extra metres to the walk just yet but I do intend to walk today. I have already done the usual morning exercises, gritting my teeth, and have written a piece for the front of the blob.

You get bucked off the horse, you just gotta get back on. There's nothing mysterious about the formula. I will rest more, though.


Tuesday, 3 January 2012 6:50 AM.

I seem to be getting up earlier and earlier. I think it's to do with the time of the year, with early daylight, though it's even an hour earlier for the Queenslanders. My 6 am start here would be 5 am for them. Still, I know that I will get tired earlier when that happens, and go back to bed earlier, but over a day will probably sleep the same number of hours regardless of when I wake in the morning.

The girls leave today on the 9 am train to go southwards to Sydney, thence to Melbourne. It's always a difficult time for us all, but the fact that we have to do it is in itself a blessing, when you think about it. I am in some ways stronger than the last time, if not in others. Maybe I'll write about it. We'll see.

I'm thinking of adding a little extra distance to my walk later in the week. The last time we shaved another 2 mins off the PB and I felt stronger at the end of it, and walked better as well.

I don't think I pose a threat to the place of any team member for the the Olympics later in the year at this stage, but I reckon I could still whup the hell out of any of them in a spelling contest.


Sunday, 1 January 2012 9:15 AM.

We made it, you and I both, to 2012. Let's hope it's as good as it can be.

I wish now that I had written this part of the blog - essentially a personal proto-medical summary/diary of the weeks - right from the start, so I could have looked back at this time last year and seen what I'd written. As it is, it began in this form in May 2011 only, more than six months after the first infusion of Avastin and 18 months after the diagnosis in December 2009. By that time, the seizures had begun again after the seizure-free months following the first administration of the drug.

Since that time, the seizures have become worse, but not greatly so, and have stabilised at about two to three per month. That's a sign that the medications are all working as best they can.

The entries show I am complaining about the same sorts of things month by month - loss of balance and memory seeming to me to be worst, though more dangerous is the random swelling of the right ankle as a reminder that a clot could wreak its damage in a second.

On the credit side, I am gaining in physical strength in some areas, and in some aspects of coordination, though this has its own dangers. I remember the only time I ever fell over on the ice-skating rink was when I got too cocky; it's a bit like that in this battle.

Even so, there's a New Year's resolution I will make. I don't want to remain as dependent as I am. I can shower and dress with no help; I can tie shoelaces again. I can eat with a knife as well as a fork.

But I want better strength and mobility. I know that seizures now are not related to physical tasks. I want to be able to do the things that make me feel more useful rather than the one who all the family resources are directed at. I don't want to stand still or mark time if I can help it. I'd rather come crashing down than not make the attempt to improve what can be while I'm in a period of relative grace.

So let's see what happens to the fine words.

5 comments (Click!):


Bob Lake Dec 31, 2011 03:37 PM
Thanks for your regular health update, Denis. You are doing well. My thoughts and best wishes are with you and Tracey for 2012.


Anonymous Jan 15, 2012 09:34 PM
So, steady as she goes, it is. Good. Hmm, another summer like the last -I'll return home to find my garden covered in mildew again. Still worse happens! as we know.


Julie xx


Julie Lake Jan 16, 2012 08:22 PM
Well it's windy and wet here, too, so I shall have a swim this afternoon (indoor pool!). Actually it's my aquarobics class. Spent the morning with friends planning our birdwatching walks for the year. Glad things are stable with you dear Denis and hope Tracey is okay. I seem to be able to comment on the Blog again without running foul of the Google Ghouls!


Denis Wright Jan 18, 2012 01:04 AM
Thanks to the Julie "Ponds"! It's threatening rain here but we got our walk in. It's a nice time for talking as well. Julie Lake, your last letter has been sitting there waiting to be answered - forgive me but I suspect I'll want to comment on all the interesting things you've written about and that stops me starting.... Pathetic, isn't it? I'll just do it in little bits!


Anonymous Jan 20, 2012 04:59 AM
'Julie Ponds'! Julie Lake, my name is Julie Marsh (hmm I'd rather be a lake, but marshes are good for all sorts of life forms. I still get annoyed as Google wants my mobile phone number and when I try to avoid that the whole thing shuts down. I'm dumb with technology but I can't see WHY they need my phone number!! Continue with your daily successes dear Denis. JM