2012 Medical Updates July-Dec

Sunday, 30 December 2012 9:03 AM.

It's that period between Christmas and New Year when the temptation is greatest to indulge in foods that are high in refined sugar and salt, and for me that's not a good idea. I'm usually reasonably disciplined in this, but I still end up having more than I usually would. This tends to result in the "thumping hangover effect" after sleeping, and that's what I had when I woke today. The only solution is to get up, be a little active and get the system moving. I did this with exercise, and the headache gradually cleared to a dull "foggy head syndrome" which seems to go away with another sleep, without the naughty foods in-between.

So, for the week, it's been only one seizure, and a little less mobility. I seem to have more difficulty getting the exact word out that ever before, which is frustrating when I have to substitute a less accurate word or flounder about like an idiot. Yes, I know it happens to the best of us, but I'm not keen on the fact that it's increasing in frequency. Yet some things that I can recall, not just from the distant past, surprise me pleasantly.


Saturday, 29 December 2012 7:22 AM.

Healthwise, all going OK. I've been reasonably circumspect and things have settled down in that respect. I'm just taking it quietly.


Wednesday, 26 December 2012 2:31 PM.

Maybe I'm paying the penalty for indulgence yesterday, that being a flute of Bolly in the morning with gifts and a glass of beer with Christmas dinner in the evening together with one or two slightly verboten things for the dinner itself, but hell they all tasted good, and I don't regret them under the circumstances. But just before midnight I had a seizure that was neither long nor strong, concentrated in the arm, neck and kidney area, with a final kick to the lower right hip, knee and ankle. It's quite methodical as you see; one job at a time. 

So I am finding walking more difficult now, and was so weary after getting up that I went back to bed before 9.30 am. I slept till 1.00 pm, and I must admit, still feel as though I've run a marathon. Maybe I'll pick up now I've had a shower.
 
No more to say on the medical front. Farewell Christmas 2012. Alice and Sylvia arrive this evening, all going to schedule. I hope the airlines have their act together!


Monday, 24 December 2012  3:59 PM. ☤ Update ☤

We are back from having the infusion done. It went smoothly but we were disappointed at the 24hr proteinuria test result, which has climbed to its highest ever reading of .51. This is in spite of having had two half-doses of Avastin before today's. We'd hoped that after the six weeks, the effect of lower dosage would drop the proteinuria count.

Our reading of this is that the damage to the kidneys from the years of Avastin has probably already been done, as indicated by the comparatively sudden increase in protein levels over the past few months – but as often happens with kidney damage, it only really shows up at that later stage.

There is no question in our minds about one thing. The Avastin dosage will never return to 100%. To do so would probably knock out kidney function completely in a very short period. So it is a matter of balancing out – of optimising – for slowing the tumour growth, keeping kidneys operating effectively as long as we can, and keeping other body functions running as smoothly as possible.

The scales indicated that although I've been retaining body fluid and superficially I look bulkier than ever, my weight itself is falling - not greatly but consistently over the past few months. I'm not concerned about that right now. In some ways, less weight should help with mobility, but it's important not to lose muscle tone more than can be avoided.

So, unless a wildcard event happens, which is always possible, the same procedure will occur in the New Year – 24hr proteinuria test, and if OK, Avastin infusion on 14 January 2013. We will see if there is evidence of tumour activity over that time, and the only way we can get an indication of that is of greater problems with brain function showing up in known areas and in new ones, and the number and intensity of seizures and headaches.


Monday, 24 December 2012 7:10 AM.

Here I was wondering why so many people yesterday were sending good wishes for the scheduled Avastin infusion 'tomorrow' [i.e., today], when I always have it on Tuesdays, and this morning it clicked. It's Christmas Eve, dopey. The hit is scheduled a day early because who's going to be at Oncology tomorrow???

Are you seeing a pattern developing here? Saturday was Sunday, now Tuesday's Monday. Today might not be yesterday tomorrow. Expect more of this. Just ask Tracey....

I'll report later in the day on the results of today's attempt to have Avastin. Kidneys crossed! 



Sunday, 23 December 2012 10:19 AM.

Just look at the Saturday entry [which is the Sunday roundup], because nothing's happened in the last 24 hours to change anything! There's been no repetition of that stomach pain. Maybe it was to do with the exercise I did immediately before.


Saturday, 22 December 2012  10:32 AM.

[Look at that. I did this a day early. It's symptomatic of my mind these days, which is worth noting.] But Sunday roundup it is, one day early. 

One seizure, one proteinuria test, declining motor function, particularly in the legs, [the right leg the main problem], puffy ankles and feet with the heat, one headache that went away without medication. More lassitude.

I had unexpected and unexplained stomach pain today after 6 am exercise that went away after 30 mins. I thought it may have been muscular after exercising but was too deep for that. I believe it was too high and widespread for kidney problems. I get an occasional twinge.

None of this amounts to much on the surface. The half dose of Avastin will be administered on Christmas Eve providing the kidney tests shows it isn't off the scale.

. 

Friday, 21 December 2012 11:49 AM.

A seizure yesterday ended a run of a few days without one, and has set mobility back a bit more. I wasn't keen on its getting into my chest area but it seems to have settled. With four days to go till the scheduled Avastin, I can't be surprised, although it may simply be the regular occurrence that continually knocks things down bit by bit.

I'm also experiencing more small tremors in the left arm. Muscle spasms might be a better description. That's also a concern. At the moment that seems most noticeable when I am getting off to sleep, which is annoying.


Wednesday, 19 December 2012 9:27 AM.

It was hot yesterday, by Armidale standards – 32°C [90°F] so my feet and ankles were swollen, and walking was difficult. When I woke this morning there were still puffy, and to walk to the bathroom was no easier than yesterday. I lay for some time reading, my feet and legs uncovered, as the early morning temperatures are cool. This allowed the swelling to go down a bit, and when I got up, I had more mobility. It's still cool for the moment and I'm feeling the benefit of that. There's cooler weather ahead for a day or two so we'll see the effect of that.

Apart from feeling lethargic and somewhat indifferent to the world, I can't complain. The proteinuria test for next Tuesday starts tomorrow. Yep – that part of the cycle again.

I think I'm a candidate for PMS. [Perpetual Medical Sh Stuffuppery.]


Tuesday, 18 December 2012 9:00 AM.

Walking becomes more of a challenge daily. Even with the walker, I'm finding the right leg coordination very bad. The knee is all right when locked into a straight position, standing still, but the act of flexing it for the step makes it very wobbly. If it weren't for the walker, I couldn't risk trying to move from one point to another.

All this is a bit frustrating, because otherwise I'm OK. But I see mobility looming as a most pressing issue affecting all sorts of other things if this decline continues at the present rate.


Sunday, 16 December 2012 9:02 AM.

Weekly roundup. In one way, there's nothing of great interest to anyone but this household, I suspect. As long as I am sitting or lying down, and not required to use my right arm, I would appear more or less normal. I haven't had any head pain worth speaking of.

It's only when standing that everything changes. I am now looking constantly for something to secure my left hand if I am not standing very square on to what I want to do. I tend to be pivoting on the right foot rather than using it in the normal way – until I get to the walker, when I can take body-weight through my upper torso and free the legs for movement. It's rather like using crutches, I guess, though I have never had to use them before.

Nothing seems to arrest this decline. It's the way things are, and will probably be more challenging in the time to come. I want to hold out with this quality of life at least for as long as I can, but there's no knowing how or what other circumstances will intervene.

Comments:

Joan December 18, 2012 11:39 AM

That doesn't sound like good news, Denis. I'm hoping it's a temporary set back until your kidneys recover sufficiently and a full Avastin dose can once again be injested.

Deterioration is never good news, but, unlike most people in your position, you are here, present, alert, bright eyed and, from what I've seen, bushy tailed, and very good company, not to mention very entertaining with your superb blog.

Or perhaps you overdid it, speeding up and down the hallway. You could be much better tomorrow, if that's the case. I'm looking forward to better news tomorrow.


    Denis Wright December 20, 2012 10:59 AM

    No, the physical deterioration isn't good, but it's inevitable. When I look at the timeline over the three years, there have been improvements only when the source of the problem has been attacked post-radiotherapy and chemotherapy. Steroids reduced brain inflammation before Avastin, and the Avastin itself has kept the tumour under control to some degree, but with a sliding scale of effectiveness; until here we are, at the predictable point – that of trying to balance the constantly changing conditions. That is, among the treatments and their effects on the body.

    If it were just a matter of increasing physical effort to counter the physical problems, then I'd be doing that daily for as long as it took. I still do what I can, knowing that it's vital for independence to stay physically active, and that this part is important even though brain is talking less and less to body. While I still have my left hand and arm, and while some areas of my brain can function, and my sense of humour, then I still have access to the world, and the world to me, even if it's a bit of smoke and mirrors at this end.

    As to the racing down the hallway, I suspect that my speed of .000001 kph probably doesn't quite measure up to 'overdoing it'. :)

    Nous allons voir.


Julie Lake December 23, 2012 7:06 AM

Following these latest postings with great interest - and of course sadness because this is all so horrid for you. Albeit expected. I hope the next Avastin does at least give you - and of course Tracey - a chance to enjoy a bit of Christmas festivity by reducing tremors etc and making you more comfortable. We always make a point of toasting absent friends and family members at our Christmas lunch; all those who can't be with us but whom we know would enrich the Christmas company - and you will definitely be on the list. In fact you would even make THE "perfect dinner guest" fantasy list, up there with Michael Palin and David Attenborough (and in my case, though not necessarily Bob's, George Clooney because I think he's gorgeous as well as fun and intelligent - bit like you really!).


    Denis Wright December 25, 2012 8:16 AM

    But I'm much better looking than George Clooney!

    Many thanks Julie. You make me think of my own perfect dinner list – and you know, I suspect there wouldn't be a celeb amongst them. That's worth thinking about – who would be on my celebrity dinner guest list? Definitely only ones who didn't bring an unwanted and often inseparable guest along with them!


Anonymous December 24, 2012 7:23 PM

have a good Xmas Denis
Liz


    Denis Wright December 25, 2012 8:19 AM

    You too Liz. Don't worry, I know exactly who you are! Very best for the coming year. *hug*


Anonymous December 24, 2012 11:16 PM

Why does it take ten hours for a person with PMS to bake a chocolate cake? IT JUST DOES, OK?
So glad you are home for Christmas.

Ex-Armadillo.
Jenny

    Denis Wright December 25, 2012 8:24 AM

    Jenny! Great to hear from you and glad you're also home on this grey rainy day [not unpleasant!] in Armidale today. SO WHAT'S YOUR PROBLEM, COOKIE? Heh heh! LET THEM EAT CHRISTMAS CAKE.

Friday, 14 December 2012 9:02 AM.

A two-minute sharp, strong seizure last night, 6.45 pm, just after getting up from a sleep brought to an end the seizure-free run for December. I guess it was about due. I don't get a fortnight free of them any more. It affected right hand, arm and neck, temporarily slurring any attempts at speech.

I seemed to recover from it with relative speed only to find the weakness in the right leg has increased this morning. Yes, that fast. I'm extremely grateful for the device from Julie, as I'll explain in a posting on the front side of the blog a bit later.



Wednesday, 12 December 2012 7:02 AM.

More than a week after the last Avastin and I am comfortable. I don't really have anything to report, which is always the best news!


COMMENTS 7-10 December:

Julie Lake December 7, 2012 8:50 PM
Why ARE slippers so called? It iS rather a silly name. Perhaps you might try the walker Denis. If it makes you feel any better, I actually bought one of those shopping bags on wheels the other day, so I can cart groceries and library books back from town - a five minute walk. It does in truth make me feel a bit old ladyish but hell, it's better than staggering up the road and through the gate with plastic bags cutting off the circulation in my arms. I'm trying to disguise it as a miniature golf bag! Perhaps you could pass off a walker as a style statement, or hang it with tinsel and little coloured balls and pretend it's the latest thing in Christmas gear. Maybe even attach a couple of tasteful plastic reindeer and pretend you're practising to be Santa. Anything that keeps you from falling over has to be a good idea right now.

Denis Wright December 7, 2012 11:15 PM
You're choc full of good ideas tonight, ma'am.

Slippers are called that, I would have thought, because you just slip 'em on your tootsies.

Love the Santa advice. We could go for a stroll through Armidale Mall, you with your little trolley and me hobbling along with the walker, while Tracey and Bob run along ahead making for the slippery slide and playing in the fountain.

Anonymous December 9, 2012 6:03 PM
Better still, you could put some of those reindeer horns on the handles, Tracey loves those! So glad the weather is cooler (for you, not for me -I was just enjoying the heat!). Julie M xx


Denis Wright December 10, 2012 1:39 AM
Thanks, Julie. As I said above, please bring the walker at any time. We'll add the reindeer horns, and maybe a klaxon.

Sunday, 9 December 2012 8:58 AM.

Weekly roundup. The Avastin dose last Tuesday seems to have brought temporary relief from seizures, though it's impossible to be sure what triggers them.  When I had most seizures, they coincided with a week of hot weather, with lots of swelling in limbs, so could that produce unusual brain/tumour activity/oedema as well? Who knows? The weather has been cooler, and I've had the half-dose of Avastin, and the swelling in limbs is less, so something, maybe the combination, has created a change.

Negatively, there are several large black and red spots on my right arm mainly, and particularly on the back of the hand. The skin is usually very sensitive for the first half of the 3 week cycle and the spots fade just in time to get a new lot after the next dose.

The look doesn't bother me but the thought that cell walls are weak is not a comforting one if applied elsewhere. The right arm is actually aging [ageing?] more quickly than the left!

Walking ability and general physical fitness are declining at a slowish but inexorable rate. I tire more quickly and coordination generally is falling away.

I am slower at doing any task, and making more mistakes, even in typing. Words – the exact word I want – are frustratingly just out of reach at times.

So we see what the coming week brings.


Thursday, 6 December 2012 9:19 AM.

Nothing earth-shattering [more importantly, bone-shattering] to report. Tracey remarked last night, as she watched me shuffle along barefoot close to the wall, on something I was already aware of but had no name for. I clearly have Foot Drop which has accelerated quite a bit recently. Perhaps too it is far more noticeable to us both with bare feet, because shoes, even the old Uggs, create a platform for the foot and stop the toes curling under while attempting to walk.

I tested this, standing flat-footed, lifting the toes of each foot. Left foot, fine. Right foot – nothing. No matter how hard I tried to raise the toes, there was almost no response.

This is neurological, plain and simple – damage caused by the advancing tendrils of the tumour through the nerve channels in the brain. The messages from the brain are not getting through to the foot. This cannot be healed [pardon the pun!] and is happening too fast to be relearned, as one would do if it was caused by spinal or foot injury.

Therefore, my idea of barefoot walking through the summer is moot. More than that, it's no deal. For safety, I must always wear shoes that give support. Even – maybe especially – going to the bathroom through the night or in early morning when I'm sleepy, putting on the Uggs for the 3 metre journey is de rigeur.

Tuesday, 4 December 2012 3:24 PM. ☤QUICK UPDATE☤

Adapted from family letter: We're back again from the treatment and things went reasonably well. The 24 hr proteinuria test based on the sample done on Thursday was .41, which is slightly down from the .50 three weeks ago. This is not as much of an improvement as we'd hoped, but at least it is in the right direction. The dipstick test today, which gives a cruder test of the current reading, was ++++ This is not good, but fairly consistent with the other – enough to allow the infusion to go ahead.

All going well, the next Avastin half-dose will be on Christmas Eve.

I'm feeling very tired now and will sleep. We'll see how things progress. The last three weeks have had their challenges and we really don't know what's ahead. Keeping things on a more-or-less even keel is as much as we can hope for. I'm also hoping for relatively cool, non-humid weather.


Tuesday, 4 December 2012 8:09 AM.

The cooler weather has made me more comfortable. Some of the fluid retention is gone, especially in the legs, which helps quite a bit. I can actually lift the right foot, but the knee joint is rubbery, and probably the greatest danger. If it collapses unexpectedly while I'm walking or standing and I fall, then I could be in real trouble. I don't now trust my bone strength, with the effect of the multiplicity of chemicals that have flooded my system for three years.

I could of course just stay sitting down, but that would accelerate muscle deterioration; already happening much too fast. So I try to keep active in whatever way possible, but I can't pretend it's easy. There are things I can do even lying in bed – exercises with limbs and stomach etc. One doesn't have to be vertical.

We'll see the outcome of the attempt to have the half-strength Avastin infusion this afternoon.


Sunday, 2 December 2012 9:18 AM.

Sunday summary: A week of increasing numbers of seizures [four, I think] but of minor obvious severity. Whatever has caused them though, is biting deep, and mobility is now very poor. Each step is one at a time, focused on it alone, and making sure I stay in balance, especially if traversing a small distance unaided. I had one strongish headache but mostly it's been foggy head syndrome and sleeping it off. Sleeping more means fewer hours to do anything else.

Looking ahead, the day of reckoning will be Tuesday. I will be surprised if the proteinuria result is good, but you never know I guess. Whatever the result, we cross that bridge and its consequences when we come to it – and them.


Comments:

Anonymous November 19, 2012 7:27 AM

Hope the new regime helps the kidneys etc. From your blogs it seems as you have still got Brian doing your bidding extremely well. Anne P.

    Denis Wright December 2, 2012 9:58 AM

    Thanks Anne – we'll do our best!
        Reply

 
Anonymous December 2, 2012 10:26 AM

Writing the blog is creativity -answering emails involves going from your own realm into that of others,in a way. You don't have the time and energy for that, I imagine, and quite right too (ie make the choices that are best for you!). Sorry to hear of the increased walking difficulty. Julie M


    Denis Wright December 3, 2012 12:28 PM

    I think you're right about that difference – which is why a lot of academics would rather lecture than give a tutorial. They only need to be in their own mind-space. It is a form of laziness, I suspect [and I rarely subscribe to the idea of laziness] or is it a refusal to accept that anyone else's contribution is worthy. Mea culpa? I really hope not!

 
Anonymous December 4, 2012 9:31 AM

    It is NOT laziness. It is (imho)that this is such an important time for you and for once in your life you are entitled - compelled, even - to open out your own inner world (like the daylilies open, exuding all their beauty and cosmic possibility, just as we all desire to do). There must be times when our precious life is to be lived for ourselves, without demands or unnecessary compulsions. The wisdom is allowing this to happen and in being able to discern which interactions are really necessary,and therefore enriching in some way. And the others - it's fine to let them pass, like word clouds in a meditation, with a smile and a wave! This is all a bit 'flowery', hoho. Once, you would have got me to read it aloud to hear how convoluted it is! Julie M

        Denis Wright December 6, 2012 9:17 AM

    I have a strong sense of "Ha ha – you can't get me now!" coming from that last bit....

    Thanks, Julie. You're a ★.

 
Anonymous December 3, 2012 8:15 AM

I'm with Julie M. Do your own thing. Also, there's a cheesy quote from a movie I like called "Wimbledon" about how to win at tennis: 'You hit the ball back over the net as hard, and as often as you can.'

(end of well-meaning pop psychology for today, and good luck with the test)
kvd

    Denis Wright December 3, 2012 12:36 PM

    Funnily enough, that conflicts a bit with what I said in reply to Julie, because it accepts that there is someone on the other side of the net you must interact with.

    But without interaction, what's the point, after all? I won't make jokes about playing with oneself.... :)

 
Anonymous December 3, 2012 1:42 PM

    Ah Denis, now I meant that as a compliment, but I accept it is quite obscure! I have taken that quote as a summation of the most which any of us can be expected to achieve. There is no mention of skill, or of an opponent; it's more about personal effort and endurance - and much less about tennis.

    Kvd

        Denis Wright December 6, 2012 9:07 AM

    It's a nice compliment. I was just being flippant, which I suppose is what many people are when offered one. :)

Saturday, 1 December 2012 8:47 AM.

Right now I feel a bit better after what has been a couple of uncomfortable days of small seizures and accompanying problems. The seizures don't cause the problems – they warn us that they're coming.

I've been griping about freezing feet for months, but that problem suddenly disappeared with the arrival of the hot weather. Ironically, that's brought its own set of trials. Ankles have both swollen and it is clear that I'm retaining fluid in the body; in the legs particularly. The suddenly added weight has thrown balance way out of kilter, and the legs, especially the right, are not working properly. Early morning cramps appear in the legs and feet when I stir and stretch unconsciously. Calf muscles feel like I've run a marathon overnight. Well... not quite.

I really could barely walk to the bathroom at 7 am today. Afterwards I went back and lay down, wondering about gnawing lower abdomen pain when it struck me that I had put on a pair of shorts to sleep in, and the waistband was comparatively tight. Taking them off made a huge difference in terms of comfort. Towards 8 am I got up and was pleased to find swelling reduction in the legs, greater body comfort and increased mobility – enough to make it here.

I haven't had green tea in a couple of days while I was completing the 24 hour proteinuria test but I am drinking it right now as it's a diuretic. In some literature it says green tea is bad for kidneys – well, it's swings and roundabouts. Not being able to walk isn't good for anything, and if I'm carrying kilos less weight then I have mobility.

I'm not too confident about a good result for the proteinuria test. That's wait-and-see. The general lassitude and desire for sleep continues but I can still focus on some things. Oddly, answering emails seems some psychological barrier more difficult to overcome than writing 1000 words of blog. Figure that out.


Thursday, 29 November 2012 6:12 PM.

If this part of the blog is to mean anything at all, then I mustn't flinch from saying what is happening as I perceive it – a reminder that if Tracey were writing her observations she may notice other things and put it differently.

I had a seizure again while sitting here. It must have been 2.41 pm because that seems burnt into my consciousness. It didn't last long but entered the area up around the right side of the neck.

Tracey helped me to bed and I slept until not long ago. When I woke I found that the lump in the throat sensation had extended more widely in the larynx area. For some days now I've been aware of a slight lisp and a tendency to have a kind of vocal dyslexia or difficulty getting words out. This is not constant but increases at times.

The right arm is not as responsive as usual and feels heavier.  The toes on the right foot are fairly unresponsive and ankles, especially the right foot are swollen, meaning that fluid is being retained in the leg, increasing difficulty in walking – so much so that this time I didn't feel able to walk from the bedroom to where I am now at the keyboard unassisted – not without taking unnecessary risk. Hot weather doesn't help. Ironic – I have been waiting for warmer weather to go barefoot. Now my toes seem an impediment rather than a help, curling up under the foot as I walk.

My take on this is that as feared the tumour has been breaking out of its containment walls, in ways that might not even be visible yet on an MRI scan. This may be accelerated by the half- and not full-strength Avastin infusion last time. It feels that its attack is on the command centres in the left side of the brain controlling the throat, and therefore, speech. I have irregular tremors – small – in other parts of the body.

I won't write more as sitting here with feet down isn't a great idea, but every macro that makes it easier for me to produce intelligible English is here and not on the laptop.

These things come and go in intensity. Later I may feel better. Meanwhile the 24hr proteinuria test is under way.


Monday, 26 November 2012 2:15 PM.

An update on medical matters is contained within this posting. I think with the reduced Avastin dose we can expect an increase in seizures at least until the next infusion [providing there is one] a week tomorrow. Please forgive any delays in responding to emails/blog comments.


Sunday, 25 November 2012 3:23 PM.

A few ups and downs for the week, including a minor seizure last night just after shower. I do think that exercise – even quite simple stuff that comes with washing hair, towelling off [which I try to do myself as much as possible] etc – can set off a seizure when things are at tipping point. I'm finding things can change very rapidly. At one time I can walk reasonably balanced without assistance, and then an hour later I might be crawling along with a left hand on the wall looking for my handholds, or borrowing Tracey's arm if she's close by. It's quite unpredictable. I expected fewer spots with the 50% Avastin dose now nearly two weeks in the past, but there are at least as many, both arms.

Tuesday week is the next hurdle, with a proteinuria test starting this Thursday. I've no idea how that will go except that I don't feel any worse in the kidneys region.

That's it.


Thursday, 22 November 2012 8:15 AM.

Ah! I was hoping it was only Wednesday, but I see another day has disappeared, seemingly into Armidale's thin air. Now I remember yesterday morning's garbage collection banging-about, so it's not entirely gone.

There's not much to report. Depending on what I eat, my kidneys seem OK, but there's now a psychological element in that! I had a slowly increasing general headache last night, but took Panadol along with normal medications and went to bed. The headache was still there when I woke, but after moving around, light exercise, a little food and now sitting here, it has dropped away to foggy head syndrome, which is fairly normal now for me.


Sunday, 18 November 2012 10:16 AM.

Weekly roundup. The longer version is in the [almost] daily version of the week below, but everyone's busy so I'll say simply that the half-dose of Avastin went ahead last Tuesday even though the proteinuria stick test was way below par. As I wrote to a friend, so I'll cannibalise it,

In a strange way, reducing the Avastin dosage by half has certain benefits, like reducing one's intake of any poison does. It gives all my body a chance to recover a bit, and that gives a sense of greater wellness, however illusory that is. My skin, e.g., seems better – but being realistic, it must also mean that the tumour will feel better as well, and seek to worm its tentacles further along the neural paths, as it is probably doing. Increase in numbers of seizures and areas affected seem to suggest that, but it's not a direct relationship. All we can hope is that the most critical parts are the last to go, to retain an acceptable quality of life for all of us for as long as possible.

The hoped for bonus is, of course, that the kidneys also feel happier and don't leak so much protein.

Saturday, 17 November 2012 1:04 PM.

A shortish seizure at 6.45 pm last night, mainly in fingers but for about a minute in neck and right side of face – enough when just after it I was finding it difficult to speak clearly. Resting brought recovery.

This is not because of the half-infusion of Avastin, because the pattern goes back a couple of months. Lessening the dose may accelerate tumour advance, but that remains to be seen. I'd like to think it will improve kidney performance to have to cope with less Avastin, but the advance of seizure activity into speech and throat is a concern.

The weather is warmer. I took off my shoes to try walking, and the difference in weight was noticeable. But... the toes tend to curl under with no shoe support and make it far more dangerous to walk. Putting light shoes back on makes the right leg feel kilos heavier, also impeding mobility by affecting gait. It always gets ya one way or the other!


Thursday, 15 November 2012 11:18 AM.

On we go. The greatest physical problem has been swelling of the right ankle in particular, which seems to coincide with warmer and more humid weather. It's not like elephantiasis or anything, just puffiness, but that fluid retention makes the leg heavier, and this means there are times, like yesterday, that I could barely lift the right foot off the floor. It has been better today and I have done early morning exercises to keep the blood flowing. I must not sit too long, even though I have my feet elevated somewhat.

My head is as clear as it ever gets, and the tinnitus cicadas inside my eardrums are screaming a little less. Sometimes. My right arm seems to feel constantly on the edge of a seizure, with small tinglings, but so far I am fending them off. These are so frequent I suspect I better get used to them.


Tuesday, 13 November 2012 3:57 PM.

We're back from the hospital, the half dose of Avastin now in my system. Without being too dramatic, if they'd had to go on the results of the stick test today [++++], then I wouldn't have been getting any, but the Oncologist visit yesterday and the 24 hr test from last Thursday determined it would go ahead as it did.

We can only hope that the half-strength dose will allow the kidneys a little time to recover – enough to bring down the level a little and allow the next half-dose in 3 weeks.

So, it's very much day to day. I'll have a sleep shortly.


Comments:

 Anonymous November 8, 2012 1:42 PM

Sorry to hear things have been so difficult. Very best of luck for tomorrow. Anne P.


Anonymous November 8, 2012 4:43 PM

Echo Anne P's comment above. I know that you and the WQ are doing the best you can in a bloody, difficult, situation. More power, more strength, to you both.

kvd


Joan November 13, 2012 9:37 AM

I didn't realise that you had a plan B. I thought it was an either/or situation. I'm so relieved that you have an alternative course of action, and that there is good reason to believe that your kidneys will improve while the Avastin continues to work, even at half dose. I know you are walking a tightrope with alarm bells constantly ringing, but you are here to walk that rope and hear those bells, and I thank the Goddess for that. I've given up on God. He's a bit too fond of the smite button for me. Goddesses haven't got a great reputation either, but at least there are lots of those to choose from, and I'll give Kali a pass for now.


Replies

    Denis Wright November 13, 2012 12:46 PM

    Until 3.30 pm yesterday, we didn't know there was a Plan B either!

    You see, when I had my last appointment with the oncologist, the kidney problem hadn't emerged. It was all going well. But organs like the kidney tend to work well until near the end point, and suddenly collapse. So Plan B wasn't even on the agenda. I'm just glad there was one devised. It's far from good, but compromise with the Avastin amount is the only option.

    We do both think, though, that this will give the tumour something of the break it's been wanting, dammit.


    Joan November 14, 2012 11:11 AM

    Back to praying to a God I don't believe in ... Your life so far is a miracle, so I have faith this miracle will continue, albeit more on a knife edge than before. I know you will keep us all posted on how you feel with the half dose.
    Much love to you, Tracey, and Christian


    Denis Wright November 15, 2012 11:18 AM

    Amen to that! All life is a miracle, one of the greatest and most wonderful mysteries of all time. [Some may have its mystery solved. Good luck to them. I haven't.]

    Thanks, Joan.


    Reply

Anonymous November 14, 2012 7:01 PM

Denis, forgive if an intrusion - but you didn't mention if there was any consequent 'rebalancing' of other meds? Only ask because what you write seems to be read by people in similar situations, as well as the rest of us who simply appreciate your wider musings.

With kind thoughts and respect
kvd


Replies

    Denis Wright November 15, 2012 11:13 AM

    Not an intrusion at all, and a fair question! The short answer is that there is no need, as far as anyone can see, for any rebalancing of drugs, because they treat other things.

    Of course, all are related in the sense that blood pressure tablets e.g., may make kidneys work harder than normal, but I believe the ones I am on are the best under the circumstances. The oral drugs have changed very little since I started Avastin on its own [i.e., with no chemotherapy], except for some tinkering with dosage of anti-seizure drugs.

    People who are in a similar situation to me should be aware that every case is different, and that their GP and specialist should know best about their particular circumstances.


    Denis Wright November 15, 2012 4:02 PM

    PS Some blood pressure tablets are even used to combat proteinuria in diabetics, so you see how complicated this gets.

Monday, 12 November 2012 5:21 PM.

LETTER TO FAMILY: We've just returned from the visit to the Oncologist so I'll be brief. I deliberately didn't say anything about the fact that I had an MRI last Wednesday in Tamworth, but it's only just before we went to the appointment today that we got the written report. The tumour appears to have remained fairly stable compared with how it looked in the last MRI in July this year. The amount of inflammation doesn't appear to have changed much either. That's encouraging.

This brings us to what is now becoming the critical issue – the proteinuria count. Just as we were sitting with the Oncologist, the result came through [finally!] for last week's test. The count has gone up again [not measured by the ++ scale, so hard to compare]. At this rate as measured over the past months, it would probably only take one more dose of Avastin to reach tipping point – where legally the regulations will prevent administration of Avastin. It goes out of the doctor's hands – he must abide by the regulation – which is there for good reasons, obviously.

The vital thing now is to try to delay reaching that point at all costs. This means an attempt at stalling the surge in the protein count by compromising on the amount of Avastin infused tomorrow [and the oncologist says the infusion will go ahead, barring some weird circumstances]. A half dose will be given.

As a compromise, this 50% dose may not be as bad as it appears. This is the amount prescribed for those forms of cancer for which it's been used, and the effect of the half rate after 26 months on the recommended dosage for brain tumours may be almost as effective as a full dose for some time, while giving the kidneys a chance to recover a little from the hammering they’ve been copping.

It's a holding operation, or as Tracey said, a juggling act. There is no guarantee that the exponential rate of the past few weeks can be slowed, even by halving the Avastin dose, but nothing is more certain than that a full dose of Avastin tomorrow will have treatment teetering at the edge next time.

That's the main story.

On another tack, at least I now understand part of why my balance is so bad, and my right leg especially drags so much. I was dumb not to see it before. Fluid retention in the legs, increasing their sheer weight, combined with lack of neural responsiveness in the right leg changes everything to do with walking.

Now I must have a short rest at least. It's not the worst news I could have got, but the alarm bells are going to ring pretty much all the time from now on.


Sunday, 11 November 2012 12:33 PM.
 
Weekly roundup. There has been an increase in seizure activity which may well be to do with the stress of the next few days' events as much as a running down of the batteries. I've documented these through the past week and really have nothing to add.

By Tuesday we will have had the result of the proteinuria test, and a visit to the oncologist during which we will discuss the consequences of the analysis. There's nothing to say until the test result comes through. In the meantime, I'm here. Another small seizure yesterday was unpleasant, and I slept it off. This rather cuts down on my awake time as you can imagine, and I am doing at that time the things I feel like. There are emails etc to respond to, but I'll choose my times.

Apart from seizures, the sensation that there's a pill permanently stuck in my throat [there isn't!], difficulty walking and lethargy, I'm travelling about as well as might be expected.


Friday, 9 November 2012 7:19 AM.

I feel somewhat recovered, mentally, from the bout of seizures the night before last. Physically I'm not in very good shape, but I can deal with that as long as it remains at this level and I'm very mindful of walking. "Shuffling" from one handhold to the next or on Tracey's arm might be a better description.

The 24 hour urine collection will end at 8 am. Tracey will go as soon as she gets up and take it to Pathology for testing. A great deal rests on the result. There's no point speculating until we know what that is.


Thursday, 8 November 2012  11:06 AM.

On 11 October, I had a series of focal seizures lasting an hour and a quarter, followed by smaller ones over the next few days.

Last night [well, beginning at 5.15 pm] a similar series of seizures began which also lasted 75 mins. overall. The difference was that they were usually more specific to portions of the right side of my body, often striking just one or two places at a time simultaneously, and they were more violent.

Every portion of my body that I had built some muscle in over months was strongly affected. I guess it makes sense that in stronger muscles, tendons etc., the effect should be stronger.

But this time an increased number of areas was also affected. The diaphragm in the kidney area e.g., the ear, the eye, the scapula – and what felt most sinister, I have to say, the right side of the neck. Why that was alarming was that as the seizure there progressed, my head was forced slowly more and more to the right, until totally at right angles to my body [which was prone – all this began as I was drifting off into deep sleep, lying on the right side.] At the same time I could feel it affecting my face, and my speech, to Tracey, became slurred.

I've never had a stroke, but I can easily imagine how it might feel if the person retained some degree of consciousness when they were having it. I thought that was what was developing as I experienced these sensations.

Recovery took quite some time. The whole thing was accompanied by nausea. For the first time, the skin on my arm was as numb as your lip feels after the gum's been injected with whatever it is these days the deaden your mouth when when they're going to drill the hell out of a tooth. [Novacaine?] That dead. It was like I was passing my hand over someone else's clammy arm. Weird.

Walking is even more dodgy now than ever. I barely move without a left hand-hold somewhere close, or Tracey's arm. If I want to change direction, I must pivot on the left foot.

The proteinurea test began this morning. That will conclude, all going well, at 8 am tomorrow.

There you go. You can't say life's not interesting, hey? I'm delaying comment writing on other parts of the blog, which normally I enjoy. I don't feel like thinking right now. It takes too much effort. Ditto for emails pending. Sorry.


Wednesday, 7 November 2012  4:12 PM.

The 24 hour proteinurea test starts tomorrow. On the basis of it, the decision re Avastin infusion scheduled for Tuesday will be made [though a stick protein test will also have to be satisfactory.]

I have to say that there are some things that are not good signs in terms of kidney function. I have had gastric disturbances. Episodes of "pill-sticking" sensation in the throat. Continuing decline in motor function, which mainly means in balance and walking. Low physical strength. Feet swelling. Tiring very quickly. Poor typing coordination - key pressure and accuracy.

So, lets see how this turns out. Day by day; more so than ever before.


Sunday, 4 November 2012 9:38 AM.

There's not much I can add to what I said on Thursday. My head feels clear for now at least. Mobility hasn't improved even though I am doing whatever exercises I can to make the right ankle and knee work.

I think once before I described it as like the leg joints are made of rubber, but with care I can get about. I'll persist in trying to keep the leg joints responding to the brain, or what's left of it.


Thursday, 1 November 2012 9:00 AM.

Look at that date! Into the fag-end of the year that hardly got started.... and the week is shot to bits too. As you see, I've not written since Sunday. It's mainly that there hasn't been much to report on the medical front, and I like it that way.

But I must confess I woke this morning, 9 days after the last Avastin infusion, with that unpleasant headache feeling located in the tumour area that I get as the three-week period draws closer to the next trip to the hospital. Getting up, exercising, then resting again tend to relieve it. Sometimes I overdo the mental effort and take a chunk out of the battery power. Writing 2,500 words [and still going] on the "Religion in Calliope" series can overload the circuits when done in one day. You better read it when it's finished is all I can say!

Those brain circuits are still operating OK, as long as I have a memo window constantly open to write keywords in so I don't lose the thread too much. It's getting worse though, I must admit. When I start forgetting what the keywords were for I know I'm really in trouble.

Walking and balance are getting worse. Every step now, every action, especially in the bathroom with an unforgiving floor, I have to attend fully to. The moment I relax on that, or get absorbed mentally in other things while on my feet, then it's not a matter of if, it's when. And if that's bad, then the consequences... let's not dwell on them now. I'm all too aware of them.


Sunday, 28 October 2012 10:40 AM.

Weekly roundup. After the drama earlier in the week getting Avastinised [new word!], things have become quieter.

There's not much to report on it except to say that I felt stronger. Still, I've been concerned that my rather pathetic fitness levels have continued to fall. If that goes on, then the whole system will collapse, and I don't want to help that along when some things are under my control in that regard and require little more than willpower.

So I did a bit of stern talking to myself, and when I woke at 6 am, got up and did a variety of more serious [by my standards] exercises. That didn't go too badly but was tiring, so after a few minutes' reading I went back to sleep at 7 am, intending to have an hour's kip and be breakfasting by 8.

I woke at 10 am, feeling refreshed. In my defence, I hadn't had a restful afternoon sleep yesterday, and my body seem to keep a pretty good count per day of serious hours of sleep and takes the quota anyway.

So here I am at nearly 11 am feeling a bit tired from the tougher exercise [involving weights, no less, but I'm not telling you the size....] but virtuous, and that's always a good feeling. I need to continue more serious exercise while I can, including outside walking, so that when the power levels in the battery decline again over the two weeks ahead, I've made whatever hay's available while the sun shines.


Thursday, 25 October 2012  9:45 AM.

Jan's birthday. A special one. Happy birthday, Sis!

The good effects of the Avastin seem to be showing up. I am stronger and my system is more settled. It's like when someone's been stepping on the hose and they've taken their foot off. I'm walking marginally better [you wouldn't notice but I do], and my head feels clearer.

I sometimes wonder how much of this is psychological, but we don't have the time or room to experiment with placebos. All I'm hoping for is as long a period as long as possible of this before the weight on the hose starts to increase, or something unanticipated happens. That's always on the cards, but we don't go looking for it.

Oh, and something you've been dying to know [hah!]. That wound on the back of my right hand – the one with the nasty black scab featured in earlier pictures [4 October] – that healed perfectly, though very slowly, with no trace of infection. It occurred nearly a month ago.


Tuesday, 23 October 2012 UPDATE 3:30 PM.

As sent to family:

Well, we have a three week reprieve, assuming there are no extra dramas in the meantime. When we got there, they said they had two differing results from the 24 hr test, but neither of them was good. So they had to confirm them while we waited. Frankly, I was surprised at that I'd done poorly because I secretly felt with the extra care I was taking that the level should drop to ++ at worst, but that wasn't the case. The tests were pretty consistent with the dipstick test today as well – +++ – the point at which they consult the Oncologist before administering. He assessed things and took the view - as we did - that the benefits should outweigh the risks at this point. The time will come when the kidney damage caused by the Avastin creates a risk exceeding the benefit, and the ballgame changes at that point. We must only cross that bridge when we come to it.

It means that each 3 week period becomes more tense, and I think I'll be doing very little to cause any sort of stress over that period. We now want to see how quickly things are changing, so it means another 24 hr proteinurea test just before going for the infusion. They are a nuisance but not the worst thing by far to deal with.


Tuesday, 23 October 2012 8:49 AM.

No phone call from Oncology yesterday, which means either 

1. [a] that the results are not yet available, or 

1. [b] that they are, and the nursing staff wish to consult with my Oncologist before a decision is made, or

2. that all is set to go ahead with the Avastin infusion at 1 pm.

There's no way of knowing at this stage. If there's no phone call, we turn up for the infusion.

So we wait for 4 hours, hoping there's no phone call from Oncology.

Even if it's all set to go, there is still one possible hurdle, and that is that the dipstick protein test always done before the infusion turns up some weird reading widely differing from that of the 24 hour test. That simply shouldn't happen, but would require consultation with the Oncologist.


Monday, 22 October 2012  9:12 AM.

The test sample has been delivered and awaits analysis. We were told at Oncology that if we hear nothing from them before 1 pm Tuesday just to turn up for the treatment then, so we hope for no phone calls any earlier. It will be a bit of a nailbiter for me.

I think I said to one or two people that we'd know the result either way later this afternoon. We won't. That's just me getting muddled – again.


Sunday, 21 October 2012  10:13 AM.

The week has had its dramas, which are still unfolding. Today I began the 24 hr proteinuria test and this will continue till 8 am tomorrow. It will then be analysed – quickly, we hope – so a decision can be made on the Avastin infusion now scheduled for Tuesday. There must be no further delays, for apart from the medical reasons for administration of the treatment at the right time, the Use-By date runs out on the Avastin by then.

I've had no further seizures though they continue to hover. Nothing much else is relevant until we get the test result.

Bob Lake October 21, 2012 6:37 PM

Denis, we'll be with you waiting for results tomorrow morning. Wishing everything possible for you.

Joan October 23, 2012 2:32 PM

It's now 2:30. You must be flowing with Avastin at this moment.

Anonymous October 23, 2012 3:48 PM

Trying to stay focussed upon the imperative, I'm sure you and the doctors took the right decision, and that whatever the experts say, surely the trade-off you've chosen is the best possible one.

Back a few years, before your own travails began, we had to decide upon the swelling effects alleviated by steroids, against the damage caused by prolonged use of same. There was no real choice, just acknowledgement of risk.

So you're a +++ man at the moment. And whoever doubted that?

kvd

Bob Lake October 23, 2012 6:05 PM

Good news Denis. A collective sigh of relief from us all.

Anonymous October 24, 2012 7:51 AM

XXXX. And it's SUCH a lovely day today! To sit under a tree..

Julie XX

Anonymous October 25, 2012 1:58 PM

Well, I think it's good that you've taken the track you have, and perhaps, with a bit of peace, the other concern will get back in its box where it belongs. I will continue to hope so, anyway.

With best wishes. kvd

Saturday, 20 October 2012 9:05 AM.

I feel annoyingly fragile this morning, after a seizure last night [6 pm] and fairly disturbed sleep after going to bed at a time early for me. I guess it's not surprising. Stress has always been one of the things that set them off, and this is a more stressful time than usual. Everything seems an effort right now, but rest is obviously a sensible idea.

The seizure was fairly strong, superficially affecting mainly the poor old fingers and the upper arm, but I was more concerned at a general milder series of simultaneous seizures, affecting the right-side torso and an uncomfortable sensation of warmth in the head. It left me with a headache, which has degenerated into foggy head syndrome now and is more preferable. I wasn't keen on some sharpish pains in the right side, which went away when the seizure stopped. This time I had no further seizures after what was no more than about five minutes of these, but feeling on the edge of one fairly constantly isn't pleasant.

Seizures are only a symptom and not a cause of the underlying trouble. Of growing inconvenience are mild tremors that may affect any part of the body – muscle spasm. They interrupt sleep, or at least, going to sleep.

I'm comfortable enough at the moment; just weary.


Friday, 19 October 2012 2:55 PM. [UPDATE]

I wasn’t able to have Avastin today because the protein level was too high [+++]. The nurses were unable to contact the oncologist, so weren't able to make the decision themselves about going ahead.

The plan is to do a 24 hour urine test [as we did when I failed the test just after falling down at the end of May]. We'll do that on Sunday and get it analysed Monday. If it scrapes through on that test, then I will have Avastin on Tuesday.

We can't know or do any more than this, I'm afraid. It really hangs in the balance. We must just follow the plan and see what happens.

I'm going to rest now.

Friday, 19 October 2012  9:03 AM.

The infusion is scheduled for 1.30 pm, but sometimes it takes a while even when things go to plan. Now they do the proteinuria* test immediately [and then, while I'm waiting for the result of that, the heart-rate and blood pressure test!] I guess it's a measure of how I perform in those under stress....

All I will say is that I've done everything right since those last seizures and I'm as ready as I'm likely to be as long as things remain stable till then. The little wound on the back of the right hand seems to be healing well, but very slowly.
___
*The spellchecker didn't like proteinuria and suggested 'inappropriate'. Maybe that's appropriate!


Tuesday, 16 October 2012 6:08 PM.

The result of yesterday's blood test placed my Dilantin level fairly much where we like it to be – at 54. I prefer it to be in the low 40s but as long as it's not over 60 I'm content.

This was important because the mini-seizures are still hanging around. I had one again last night beginning in the upper arm, and ending in the hand. Its effect was minimal physically, but it reinforces the discomforting fact that they are here and different in action. We needed to be sure that a wild Dilantin level at one end of the scale or the other isn't why there's seizure activity [I'd prefer it to be a wonky Dilantin level rather than anything else, as it's within our control to adjust, but it's useful to eliminate variables at least if we can.]

Other than that, there's not a lot to be said. The little wound is healing well, but slowly, I have a reasonably clear head, and the ankle swelling – well, it just comes and goes.

We wait till Friday's Avastin procedure and hope nothing prevents it from happening. No point speculating.


Sunday, 14 October 2012 9:32 AM.

Much warmer after the snow and sleet earlier in the week. I'm grateful for that. It feels to me to have been a long cold procession into summer.

It hasn't been the best of weeks as you'll see from what I've left below. I have recovered somewhat from the seizures and things feel more 'normal' [whatever that means]. I've felt a little steadier on my feet, especially after waking, but to be realistic, I tire faster and must not sit in the one place for long.

After that bout of seizures my right leg and arm each feel about 5 kilos heavier, so I have to adjust to that. I was not pleased that after doing a little arm exercises yesterday, I immediately developed mild but definite seizures in the right hand. I stopped and lay down and after a couple of minutes these went away, but the feeling that they are hovering is not a pleasant one. I will have to revise yet again my thinking on the relationship between exercising and seizures, especially when I seem to be at a watershed spot. For a long time, it hasn't been an issue.

It's easy to become obsessive about health and the way things are developing, and I've learned it's not a good idea to dwell on them too much. So I'll just turn to things I'm happier doing and enjoy what the good parts of what this day brings.


Friday, 12 October 2012  9:11 AM.

I wrote yesterday: This is usually the part of the cycle I feel best, and tend to be brought to earth suddenly by a seizure. There, I've said it – have I invoked the devil? So far so good....

I sometimes wonder if there's a malign sentience about Brian. Yesterday I had seizures. Not run-of-the-mill ones but pretty bad ones, following a persistent headache over nearly a day.

I'd gone to bed a bit later in the afternoon yesterday than I meant to. Why doesn't matter here, though it was after I'd had a frustrating time preparing an image and Blogger wasn't cooperating – but I sorted that out. That was about 4.15 pm.

I fell asleep almost immediately and was jolted awake by a strong seizure in the right hand. Not thinking straight, I thought it was my left hand, and that surely got my attention. I don't need to spell out what that would mean, but I realised soon enough it was the right hand, as usual. The mistake certainly sent a charge of adrenalin through my body. 5.25 pm.

It was a strong seizure and my hand was getting very tired from the relentless task of clenching and unclenching the fist that I had no control over. A tightening sensation crept up my arm and right up to the tricep. The right side of the neck was uncomfortable. I'd felt that before, on the day of the first seizure nearly 3 years ago, and once or twice during a seizure subsequently. That concerned me.

Then after 3 minutes or so, with a few violent movements and as it often does, it ended suddenly. I was much relieved, but disturbed by the feeling it hadn't finished with me. I was trying to avoid calling Tracey in because I had the feeling she was sleeping after doing all sorts of exciting jobs downtown like grocery shopping.

Unfortunately my feeling was right. 15 minutes later, the fingers started their clawing again, but this time I felt a much more sinister sensation happened – the burning, prickling electrical vibrations all up the right arm that I'd not experienced since that very first seizure almost 3 years ago. 5.40 pm.

I called Tracey in, not knowing where this was heading or how long it was going to go on – always the real problem. Yes, she had been in deep sleep so you can imagine how waking to this felt for her. The neck muscles were also in minor but constant spasm, and the seizure crept up into the right side of my face, trunk, into the kidney area and lower down, and then fairly violently in the leg and foot. For the first time in years I asked for Rivotril [under-the-tongue clonazepam] to see if it would settle things down and get brain talking to right-side body again.

These always seem like they're going on forever, but in all it couldn't have been all that long. Suffice it to say that for the next half hour I had a series of seizures, mostly minor but some I knew were playing merry hell with my leg and right side trunk. My voice felt slurred and that feeling of immense weariness came over me between aftershocks.

There's a point I'm always pretty sure the seizure session has finished. In the case it was about an hour after it all began – by far the longest and most intense series of seizures I've had since that first day in 2009.

We'll do blood tests to check Dilantin levels etc. and set up an MRI in Tamworth before the next oncologist appointment early in November. I am still very tired – or tire quickly – so much as I'd love to respond to comments on one particular blog entry [which has yielded and continues to yield some extraordinary responses – read them!] I'll hold off yet again or do them little by little.


Wednesday, 10 October 2012 9:17 AM.

Sunny and windy, and still cold for me, though predicted to rise to 24ºC. How I wish it felt like that to me. Iceblock feet....

My right hand is healing well and the red spots are fading. No other self inflicted injuries to report. Some days my feet swell, especially but not only the right, other days not much. I can't pick it, apart from a loose correlation with the weather.

We went for a walk on Monday for the first time in ages. Right round the block this time, and it felt good. Within hours my leg muscles had stiffened up and by evening were quite sore.

This means I have been kidding myself that the indoor exercises I've been doing have anywhere near the value for maintaining strength that I thought. In other words, it can't all be put down to motor dysfunction. It's physical as well. I will just have to get out there and do it, but I can't do it alone. Unless I have Tracey's arm outside, I feel totally unsteady and am so unable to balance that if I went walking on my own – even in the back yard – I would surely lose balance and fall over at some point.

Even in the house, where I know exactly where to put each foot as I move about, the chances of falling increase, and so I concentrate hard on each step. If I stand in the bathroom to shave or to clean my teeth, I now make it an exercise to stand squarely with very straight back and stop my knees, particularly the right, from slowly caving in. When I concentrate on anything else, the sinking process starts.

I have to maintain walking somehow or I will not be able to walk, and I can't tell you what a blow that would be to me to be unable to, psychologically and physically.

In other respects, apart from not being able to remember what I'm doing the moment my concentration lapses, I'm OK. Foggy head syndrome occurs when I'm tired, but no headaches for a while. I'm just slower at doing everything.

This is usually the part of the cycle I feel best, and tend to be brought to earth suddenly by a seizure. There, I've said it – have I invoked the devil? So far so good....

It's my understanding from what I have read that the seizures are caused by a chemical released by the tumour into the surrounding brain tissue. I would be interested to hear what a specialist would say about this recent development and your conclusions. While what you say is possibly/probably true, perhaps there is something else going on.

If the surrounding brain tissue no longer responds to the chemical, then perhaps the tumour, as it is now, has reached a plateau, cannot affect further healthy brain tissue.

Also, perhaps the Avastin has turned off the chemical. Unlikely, but stranger things have happened to people with so-called "terminal" cancer.

In this relentless situation, perhaps there is something happening that is not entirely negative.

I once predicted that you would survive but be disabled. I still hold onto that hope. In the end, when everything else is out of the box, what is left is hope.

Replies

    Denis Wright October 10, 2012 1:15 PM

    My understanding is that it's not one chemical that's released but the waste products produced by the tumour as it feeds on what all the other brain cells do. Unlike the other brain cells its waste cannot be disposed of at a quick enough rate to prevent inflammation from that source occurring – and, together with making space for itself by destroying otherwise healthy tissue around it, thus producing detritus, increases the destructive effect.

    This is still limited to the motor centre. It's unlikely to remain that way. Normally [if that's the right word!] a tumour's growth is exponential, which means a point will be reached at which it runs completely out of control – like a grass fire that has a controllable size at one point but doubles its size shortly after, and is suddenly in wildfire mode.

    I would love your idea that it can't affect healthy tissue any longer to be correct, but there is too much evidence as you can see from today's (10 Oct) update that destruction of other functions is continuing – at an increasing rate.

    The best outcome we could hope for is that your prediction would come true, but the objective evidence from the inside [and from what Tracey and Christian can see daily] is that it may be too optimistic. But... let's leave that hopeful door open. 'There are more things, etc….' I do hope, but I don't do destructive hope, as I'm sure you agree. Anne Powles's comment on this on the other part of the blog [8 Oct posting of mine] is instructive.

    It's also interesting to look at this blog posting from June last year - 15 months ago. I could have written it yesterday, except that I have no more hope of standing on my tiptoes now than do the handsprings I could by the dozen in my youth. And I can't balance, and walk properly at all, or keep any new thing in memory for more than 2 seconds. Hope is fine, but as you know, it is foolish, even disastrous, to depend on it.


Joan October 13, 2012 11:17 AM

I returned from Sydney to find your recent posting on your terrible seizure(s). We all spoke too soon. Brian heard and decided to let you know. I hope you are feeling better and are beginning to recover from this vicious attack.

I know I am possibly too optimistic, but against all the odds, you are still here, still blogging, and still lots of good things that none of us expected. You might not be able to stand on your toes anymore, but your writing gets better all the time. I know it gets harder and your memory is not as good, but honestly, Denis, despite all the setbacks and obstacles, you are creating a wonderful piece of work (no reference to Julia intended), and I can see from the most recent postings, that you have reached out to and touched many people in similar situations. Your body may be failing, but your mind and soul are becoming richer and more beautiful by the day.


    Denis Wright October 14, 2012 10:06 AM

    Thanks, Joan. I don't know about wonderful but it helps me to order my thoughts by writing. If others get something from it, that's all to the good.

    The best thing about it is that it can show what's still manageable for me, given time and much revision. Would that time and practice at the mechanics of the physical body have as much effect.


Joan October 14, 2012 10:36 AM

We all wish that too. When I think of how Gerard Allen's GBM4 affected him, I think of all that he could have contributed if the tumour had been in a different place.

Although of course I'd far rather see you filming Tracey on stage, I realise that many people treasure the contribution you are making to so many others in similar situations. By making the very most of a tragic situation you are setting a rare example. When my turn comes, I hope I am able to meet it with ten percent of your courage. I don't think I could manage much more than that.

Anonymous October 16, 2012 10:07 PM

Hi. I'm always here, reading the what's new updates.I look every day. Hi.

Julie xx

Joan October 17, 2012 9:45 AM

I check every day too, except when away, which these days is frequent. I'm worried about the changes to the seizures of course, and hope that all signs are well on Friday and the Avastin infusion goes ahead unimpeded.


Replies

    Denis Wright October 17, 2012 10:47 PM

    Yes, we just see how it goes on Friday. That is, barring any other circumstances.

diannemonnier October 19, 2012 3:26 PM

Rest and renew dear friend xo


    Denis Wright October 21, 2012 1:14 PM

    Thanks, Dianne. We wait.


Anonymous October 19, 2012 4:44 PM

Denis I hope the rest and recuperation helps with the levels. All I can offer otherwise is hopes and thoughts. You obviously have those in abundance, but I'd just like to add my own to the pot - for both you and the White Queen.

kvd


    Denis Wright October 21, 2012 1:19 PM

    Thanks again to you. I know you've been in Tracey's position, as are/have been several others we know. In these situations it can be especially difficult for all concerned.


DRKW October 19, 2012 10:07 PM

Proteinuria occurs in 27-38% of patients receiving bevacizumab. It is usually asymptomatic (Grade 1 or 2) and Grade 3 or 4 proteinuria is rare (1%) (1-3). Proteinuria is not associated with renal dysfunction, and it improves after bevacizumab is stopped. The mechanism of proteinuria is not fully understood, but is likely due to a glomerular effect, such as membrano-proliferative glomerulonephritis. Glomerular endothelial repair may require VEGF and anti-VEGF therapy, thus, interferes with glomerular endothelial integrity (8). In addition, erythropoietin stimulates VEGF release in the glomerulus and the low levels of erythropoietin in cancer patients may aggravate the condition (9). There appears to be an association between the occurrence of proteinuria and hypertension, either pre-existing or induced by bevacizumab

Eligibility
• Dipstick urinalysis shows no proteinuria or 1+ proteinuria
• If dipstick urinalysis shows > 2+ proteinuria, 24-hour urine for protein must be < 2g
Monitoring and recommendations
Dipstick urinalysis should be done before each cycle of bevacizumab.
Grade 1: Continue bevacizumab. No additional investigation; continue to monitor.
Grade 2: Give bevacizumab and collect 24-hour urine within 3 days before next cycle
• 24-hour proteinuria < 2g: Give bevacizumab. Continue to follow by 24-hour urinary protein before each cycle. If urinary protein falls to <1 g, resume monitoring by dipstick method.
• 24-hour proteinuria >2g: Hold bevacizumab and repeat 24-hour urine collection for proteinuria before the next cycle.
o Repeat 24-hour proteinuria <2g: Give bevacizumab and continue to check 24-hour protein before each cycle. If protein decreases to <1g, resume monitoring by dipstick urinalysis
o Repeat 24-hour urine >2g: Hold bevacizumab and continue to check before each cycle of treatment. Give bevacizumab if protein decreases to <2g. If not <2 g after 3 months, discontinue bevacizumab
Grade 3: Hold and check 24-hour urinary protein. Restart bevacizumab if 24-hour urinary protein decreases to <2 g. If not <2g after 3 months, discontinue bevacizumab.
Grade 4: Discontinue bevacizumab

Joe Black is in no hurry - he has his own agenda. Fluid intake / Plenty of rest.

My best - as always.

Sunday, 7 October 2012 9:00 AM.

All good on the hand-healing front.

Another week of no seizures, but Tracey and I have been discussing this, and it turns out we independently came to the same conclusion.

For almost three years I've been pointing to seizures as the measure of how well I'm doing. The measure. The logic says, the fewer the seizures, the better we must be controlling the condition.

We know that this is not true. To make a crude analogy, when a part in an engine stops misbehaving, it could be either because it's now working properly, or it could be not working at all, even if the car still goes – for the moment at least. The breakdown of that one part can eventually cause the collapse of the whole system.

We think that the latter is where we are at with the motor centre controlling an increasingly large portion of my right side. In other words, it is ceasing to function and the path is relentlessly downhill.

My friend David Stratton, who has Multiple Sclerosis [MS] and his wife Ros Hart will understand this path all too well. Regardless of what one does in terms of exercise, it's even more problematic than the task of poor old Sisyphus. At least there were times when he got to the top of the hill with his rolling rock before he had to repeat his task. For MS patients, it's uphill all the way.

With what exercise I do, the losses to mobility in particular still exceed gains. To get up and walk, to balance, to be confident physically are in an inexorable decline. Do more, you say, to relearn the motor tasks. Focus on it. Keep doing it.

There's only so far you can go in achieving positive results. If it were a place where the tide could be turned as I sit below high water mark, or to get above that mark, it would happen. But like MS, some conditions deteriorate faster than they can be reversed or the status quo maintained.

So we cope with the changes day by day, fight against them where we can, and adapt to them otherwise. Some brain functions remain comparatively strong, for the moment. But what comes up on the screen is not a true measure of the condition, because of what it hides. As Tracey says, people often judge you by what they read, or by the conversation when we meet. There's the smoke and there's the mirrors. I'm not asking people to look behind them; just to understand that's often what it is. It's no more than facing facts.

The seizures could also return, maybe stronger than ever. But they will only be a symptom, not a cause. The focus now is on other things.

Now let's enjoy our Sunday; the first one of October 2012, and the start of daylight saving in this part of the country.


Thursday, 4 October 2012 4:02 PM.

So far so good with the shallow wound on the back of the hand. Although it has a large ring of redness around it [one that's expanded somewhat since this photo was taken], it feels dry and comfortable. The only real danger is if I open it again by bumping it.

Normally such a thing is a trifle and not worth mentioning. I was always a quick healer, but now the process is very slow. If a wound with an open area like this were to get infected because of being reopened, it is likely now to ulcerate, with the possibility of blood poisoning, and unpredictable effect on the regular treatment that keeps me alive.

So a ridiculous little injury has to be nursed with ridiculous care until it reaches the 'safe' point!

What looks like good old dirt on the other hand is the residual bruising from the Avastin cannula insertion a week ago.


Tuesday, 2 October 2012 10:24 AM.

I look a bit of a mess actually, but it's not as bad as that sounds. The wound on the back of the right hand is a black triangle but dry with no sign of infection after the stupid incident with the corner of the kitchen bench. As long as I am careful we should be able to keep it that way till it heals fully. My skin in exposed spots is now paper-thin. Any accidental bumping ends in contusions, as I discovered with my left arm this morning.

I had a headache most of the night that I was sleeping [well, it was there when I started sleeping and was still there this morning]. It has eased with Panadol and is merely a nagging reminder that I can expect more of the same.

I also thought my nose was runny earlier but it turned out to be a spontaneous nosebleed – the first I have had since this all started. Avastin or Clexane? Who knows. There are no tests to establish that. If we cut down the Clexane injections on the assumption that this would help, and it turns out it's the Avastin, I could acquire the double whammy – continuing bleeding and simultaneous clot formation. I'm not keen to have that going on for the sake of my brain. Moment by moment that's a risk, but it's hardly new.

Therefore we change nothing while it's more-or-less under control.




Sunday, 30 September 2012 8:31 AM.

Quite a good week all round, except for a couple of incidents in the past 12 hours. There were no seizures for the week. I even had a quarter-glass of white wine on Friday night with no obvious ill effect. I don't walk any better, I confess, and my balance is still not good. I've felt wearier in the past week. I had one headache last Thursday night which Panadol and/or sleep seems to have seen off.

I am now sporting a large bruise on the back of the left hand which is the effect of the Avastin infusion last Friday. I'm not quite sure why there was leakage of blood across the area under the surface but it's not painful.

An hour ago I walked past the corner of the kitchen bench and struck the back of the right hand on the corner. This resulted in a good-sized three cornered tear exactly covering that largest area of red surface bruising in the picture shown Wed 26 September. Just ripped it out and peeled it back. Normally I wouldn't be concerned but I have had no infections in the whole three years and a little thing like this under present circumstances can have unpredictable effects.

Last night there was an incident with an electrical power cord for the laptop which saw my lounge recliner turned into a veritable electric chair – in which I was sitting. A blog story on its own. How could that happen? You may well ask. For the moment, let's just say I was a couple of inches away from some sort of date with destiny. That type of event won't be repeated.

Oh – it's now two whole years I've been on Avastin. That's a milestone considering the average expectation for someone my age.

Friday, 28 September 2012  3:20 PM.

The Avastin session is over, with the news that I had a good result for the protein test, meaning that the infusion could go ahead. In fact, I scored the best result I could have hoped for – a one+ reading, which is a significant improvement on the ++ result three weeks ago.

That's really the only thing that matters right now. It's time for me to sleep soon and clear whatever tension has accumulated over the past few days.


Wednesday, 26 September 2012  8:03 AM.

As the last days before the Avastin infusion pass, my body feels as if the battery is just about flat. I don't know how much this is psychological, but the exercises are harder to do. I have to focus consciously on each to make sure the left side isn't compensating where it shouldn't, and to stay balanced. I do them anyway, as consciously as I can, but three-week extensions on keeping the tumour in check take their toll.

Still, in other respects my body has been functioning reasonably. If there is any failure of organs in progress then I don't experience the symptoms. Regrettably that's no guarantee, but it helps with coping.

When it's sunny early in the morning, I'm able to pull the eastern curtains in the lounge and absorb what sunlight I can. It feels like photosynthesis and reminds me of an old Asimov sci-fi story I may come back to, as it has relevance in other ways.

The cell walls are weakening and I wonder how much Clexane is enough, but this may be more to do with Avastin than Clexane. Here you see my right hand. In this picture it's much better than it was a week ago, as the larger spots are fading from the inside out. It was much more sinister-looking last week. They were probably the result of holding the right hand too firmly with the left, for my index finger fits perfectly over the 'bruising', even down to where the raised knuckle does less damage. I'll be careful about that in future. The swollen size of the hand remains, but the skin has become more wrinkled than the left.

That's enough for now. I may stand in the sunshine while it's there. 

Comments:

Anonymous September 28, 2012 5:16 PM
Well done Denis, and sleep well! Have been 
aware of your concern about the protein test, and had been crossing fingers and toes etc.

Sounds like a fairly good end to a long week for you. (And yes, I do realise the above is just stupid sort of faff, but can't think of another way to say you're in my thoughts)

kvd


Denis Wright September 30, 2012 11:55 PM
Thanks very much for the kind thoughts. Yes, it has been preying on my mind a bit. This result will make me less anxious about the next one, perhaps, though a sample of one is a bit low to make judgments from.


Bob Lake September 28, 2012 7:07 PM
Good news, Denis. Like kvd, above, I realise the inadequacy of anything I can say except to let you know that we also are thinking of you. It is all so relative isn't it? Good news for some people is winning lotto; for you, and for your family and friends, it is an improved protein test that gives you another three weeks on Avastin and a better night's sleep. You have been beating the odds for so long now that it is wonderful to see you win back some ground again. Love to you and Tracey.


Denis Wright September 30, 2012 11:59 PM
Thanks Bob. That sums it up perfectly. I appreciate your concern and what you said is more than adequate. :)

Anonymous September 29, 2012 9:17 AM
YAY! PHEW! Love XX

Julie M (more XXOX)


Denis Wright October 1, 2012 12:03 AM
Phew indeed! I can't tell you how long they kept me waiting to let me know the result but it seemed awfully long.

Lorraine R October 5, 2012 1:25 PM
As I await UTAS approval, I now read your updates regularly and have referred you to others as inspiration. And they have been inspired!
All the very best.


Denis Wright October 7, 2012 12:15 AM
Thanks Lorraine. I'm sure the approval is on its way. I don't know about inspiration but taking each new thing as it comes and having wonderful support is what makes success in fending off the attack possible - for as long as we can. 


Sunday, 23 September 2012 8:50 AM.

Lovely day here on weekly roundup day. There's not much to add. I've continued to do the strengthening exercises for the leg[s] and they are helping, I think. This is assisted by the fact that though I've had minor seizures through the week, they haven't really seemed to have gripped the leg as they usually do.

I do have a pretty massive rupture of skin cells over the better part of the back of my right hand caused, I believe, by gripping it too hard with the other one in some exercises [the marks fit exactly where I would have placed my fingers. These cells are very fragile. It's painless but looks like a serious gravel-rash. They take nearly three weeks to heal.

Another infusion of Avastin is scheduled for Friday, so anxiety over whether I will pass the protein test will no doubt increase until I actually do it. At the moment, five days away is enough for me to be able to do other things without thinking about that and the consequences of failure too much. Que sera and all that. Yeah.


Friday, 21 September 2012  10:53 AM.

I've been a bit negative this week, but after another minor seizure on Wednesday night, I decided it's time to get positive. So for some days I've been working hard to build on what I have and not dwell on what is slipping away.

That way I might slow down the loss side of it and regain something. I've been focusing on physical activity to straighten my back and try to restore strength and balance in the right leg especially.

These things are important because they also build a bit of psychological toughness that is all too easy to lose when the white-ants attack the system.


Wednesday, 19 September 2012  7:42 AM.

I'm here fairly early and feel reasonably well. My head is clear so I'll take advantage of that. It tends to get foggy more and more quickly as I try to cram more into my waking periods. Tinnitus is less today, seemingly mainly restricted to the left ear for now. That's a good sign for the day. I am thinking more slowly and needing more little aids to memory as I write by jotting down key points in an open page for the purpose. It's possible for me to forget what I was up to with a momentary distraction.

The biggest struggle right now is the physical one, as mobility declines at what seems a faster rate. I find that walking now is a totally conscious process, but which I mean I have to focus on every footstep to be sure I retain balance. I clasp hands in front of me for centering as I walk. This helps with balance.

If I relax my body while standing still, I've become aware that I am leaning forward as the default position. I have added more to my exercise routine – the simple one of standing up as straight and tall as possible while deep breathing, hands clasped behind my back to know where my body's vertical centrepoint is. This I hope strengthens to joints in the positions I need them for safe standing and walking.

When standing at the kitchen bench or washing my face in the bathroom, I also notice my knees slowly sinking, so now the simple act of standing must also be a conscious one. It would be possible to collapse to the floor if one leg or both were to give way suddenly when I was focused on something else. I also do a lot of joint movement and stretching so that even as the signals from motor centre fail, I know that physical capacity is still there. A decline in both simultaneously would soon immobilise me altogether.

The deep breathing is also needed to try to keep my lungs in order. I have had occasional periods lying in bed of shortness of breath which I put down to declining lung function, but found that when I clear my sinuses or get moving physically, this disappears.

That looks a bit of a miserable litany, but it's how things are. Sitting here in my chair, I am perfectly comfortable.


Sunday, 16 September 2012 8:31 AM.

Here it is again – weekly roundup time. All things considered, it's been OK. Just the one seizure nearly a week ago, and not too bad. I was up early and did exercise, and then slept till 8 am. I was saddened – more frustrated than saddened – to find as I walked out that my right knee is only barely supporting me. Maybe it will cooperate better soon but it means I need extra caution getting about. The quality of life graph is creeping downward, much as I don't want to admit it.

Let's wait and see what is ahead for the week. Apart from a vague but nagging headache, so far so good.

Thursday, 13 September 2012 12:43 PM.

Maybe just read this.

  
Tuesday, 11 September 2012 7:10 PM.

I'm feeling refreshed after my afterburner sleep [afterburner? I misspelt afternoon and did an autocorrect on it, and that's where we ended up. It's appropriate in a way, because that is exactly what it is like] and started reading on the Kindle. What I didn't realise was that it was actually afternoon, and I thought it was Wednesday morning at 6 am, but was so engrossed in what I was reading that I didn't even realise it wasn't getting any lighter, and it was an absolute shock to find so much activity about.

So it's still Tuesday afternoon, 9/11. I've had no problems to speak of today but am noticing that when I sleep on the left side [I alternate between right and left] I tend to feel what I can only call a 'pressure pain' along the craniotomy scar and in the surrounding area when I waken.

It's not anything much and I wouldn't let it create too much angst, but it's been more obvious as time goes by – over the past weeks or maybe even a couple of months. There's absolutely nothing that can be done about it in terms of prevention. It's just worth documenting at this stage.


Monday, 10 September 2012  9:56 AM.

Another seizure last night, this time when I was sitting in the lounge chair and not, as is more often the case, in bed. It was rather like the previous one on Friday night, except that I could feel it in the shoulder and neck.

It's not the first time it's happened this way, but frequency of seizures is increasing, if not the severity and duration, and tend to be more localised. A year ago, they were longer and stronger and more completely down the right side.

I feel there is something more insidious going on now. Change in physical behaviour/response resulting from the tumour has altered its course. It remains to be seen what the consequences are and how they manifest next.


Sunday, 9 September 2012 9:34 AM.

Weekly roundup time. The positives are that I have had little head pain [over the last month in fact] and not much foggy head syndrome. I've had the Avastin infusion and at this stage no new bloodspots have emerged on the right arm skin. I can think relatively clearly, in bursts. I am happy to read more rather than write, although there's story on story I'd like to have out there to engage people in comment, even though commenting takes effort and time itself. The seizure on Friday was not a serious one, just hard on the right hand finger joints mainly.

  I know all too well that my facility with language is slipping. Words I want come less easily, spoken and written. I have times when I find speech a little more difficult. My attention can be diverted by even a noise and all that went before is gone, though it may come back. The protein count is up which means a three-weekly battle psychologically, now that the stakes are so high.

   My left hand is my saviour. Without it I am lost. Tremors are a nuisance. I was reminded by Jan of something I'd thought about before – that healing after an injury is a slow process, and my back's mending has been complicated by the fact that the right side was already out of kilter from the brain tumour effects. This means that healing is taking place in this off-centred position and this partly explains why my gait is now so badly affected.

   I'm doing everything more slowly and the entire world seems to be speeding up. I'm staggered that we'll have our Sunday brunch shortly when it seems barely 3-4 days since the last. That part feels the most disconcerting of all.

   Things could be worse! The irony is that most of these things create more difficulties for Tracey and Christian than they do me.


Saturday, 8 September 2012 12:32 PM.

Big apologies to those who might have been looking for the news that I promised faithfully to report straight after Avastin yesterday. I'm shocked to discover that I hadn't done so, after writing to family. This is how my memory is now playing tricks on me. Sorry sorry sorry.

Short version is that though I was hoping for just a + score, the  test came out at ++. They went ahead anyway with the infusion even though this is once again a borderline result. It seems likely that it won't go below ++ again, so we can only hope the three week extension continues without wrecking my kidneys.

Two hours after the infusion I was just drifting off to sleep when I got a seizure, mainly of the right hand, but because I've now built up some strength in the right arm, I could feel the muscles pinging there too. Strange to feel that again. It didn't seem to affect the leg. I believe is was related to the stress of waiting to see what my fate would be, though I was also due for another one and it's happened before straight after an Avastin infusion.

Friday, 7 September 2012 9:47 AM.

The Avastin appointment is for 2.00 pm. I'll try to post here the outcome as soon as possible as I know kind family and friends will be wondering.

[2.00 pm is a correction from 1.30 pm which I wrote originally. Tracey says it's always been 2.00 pm. Re memory, I rest my case.]

Wednesday, 5 September 2012  11:58 AM.

Windy, not that cold unless you've been sitting down too long, as I have. The battery is really going flat as the time for Avastin gets closer. My right knee now barely stays locked in without conscious thought. The power I thought I had in my right arm seems like a mirage. The exercises I do every day show that the right side isn't responding well to signals from the brain. I have to straighten myself in the chair, or walking, to compensate for a severe list to starboard.

I know there's nothing different about the muscular strength on the right side, but my brain tells me otherwise. I can feel the tumour gathering strength somehow, but experience very little head pain and that only when I overdo things a bit.

Memory for writing is now very frustrating. If I begin a sentence and am temporarily distracted, it's all too often that I lose the entire thread. Half a sentence sits there and if there aren't enough clues there about what the thread is, I lose it. In the same way, when I am having my 'thought' sessions early in the morning, the track I was on comes to a dead end. [The sensation is more like a crumbling of the thought. It's weird. I can feel it breaking up, and it's gone.] Last night I wrote a thought down with pad and pencil – still the best way! and then tried before reading it to remember what it was. I didn't have the foggiest till I read it again. I've forgotten it again now.

I know things look reasonably orderly and [some word that won't come to mind] on the screen, but you'd be amazed. A further complication is that typing one-handed I am missing the correct keys more and more, or not pressing hard enough, and it looks like drivel. More than usual....

I must stop whining and get up and exercise, even if just to get the circulation going. I'll have less to moan about if the Avastin shot goes ahead on Friday.

Sunday, 2 September 2012 10:25 AM.

Not much to report as can be seen from the non-existent daily entries for the week except yesterday, which rounds up the week. I woke this morning feeling very lethargic and ended up not getting up till 10 am. I am up usually by 8 at the latest to keep pill-popping regular; something I believe in.

-5ºC this morning! Maybe it was my body telling me not to get up.... Later I'll do exercises I should have done before.

Avastin is scheduled for Friday. We can only hope the protein count is OK.

Saturday, 1 September 2012 8:16 AM.

 

I'm a bit shocked to find I haven't posted a thing on this part of the blog all week, though you have to admit I've made up for that on the other side. This simply means that there hasn't been much to report. I usually get one week of the three-week cycle which is nice and calm before something blows it out of the water. So it has been in the past week.

Not wanting to take any extra medication than I can help, I thought it safe not to do Rhinocort yesterday as I hadn't been hayfever sneezing. Well, that seems to have been a mistake, because after waking this morning and reading for a few minutes I had the most ferocious attack of sneezing I can ever recall. Stinging eyes, nose like a tap. It wasn't pretty. I solved it by washing my face thoroughly to get rid of whatever allergens had built up in my eyes and on my face overnight. That seems to have fixed it, but I will snort the Rhinocort daily for a while at least.

That's it. No other exciting news like that! I have seen in yet another spring. Fancy that.

COMMENTS

Hey Denis, from your Twitter comments. I had no idea what you were fighting. You make far fewer errors than I do. Keep posting!

    Denis Wright September 6, 2012 11:32 AM

    Thanks, Margaret. I see re-reading stuff that I'm making more and more errors that I fail to pick up till they've been out there for quite a while. At least when composing, I get the chance to zap the worst of them.

Anonymous September 8, 2012 9:23 AM

Saturday 8th Sept -what has happened about the avastin??

JulieM xx

    Denis Wright September 8, 2012 1:20 PM

    All explained now. Unbelievable lapse of memory as you see in the update. Feeling most aggrieved at my confusion. Sorry, Julie. What a time to do it!

Anonymous September 8, 2012 2:02 PM

Relieved, with disappointment about the protein level. Please don't waste energy feeling aggrieved!!! Be kind to yourself, and uplifted by how fabulously well you always have handled this situation. And still do!

Hooray for avastin!!!

Julie xx

Denis Wright September 9, 2012 10:10 AM

    I guess we'll see how well I handle it in the next few weeks, Julie. As I said, pretend time, if there ever were any, is well and truly over.

Anonymous September 8, 2012 9:52 PM

I was pleased to see your tweet that the Avastin had gone ahead. I hope the next three weeks are seizure free and we see some interesting blogs. No pressure! Anne P

Denis Wright September 9, 2012 10:17 AM

    Thanks, Anne. They're all right here, in my head. Somewhere. And some incompletes. I want to deal with that, but don't worry. I don't feel pressured. On the contrary, there can be such a thing as posting too many longer stories too often. Yes, I know. My therapy.... :)

Anonymous September 11, 2012 8:42 PM

I'm glad your days are becoming timeless. So it should be for us all, more often.

JulieM

    Denis Wright September 11, 2012 9:29 PM

    I don't mind that they're timeless. What I do mind is that each week seems only to have 4 days at most!

Anonymous September 19, 2012 8:55 AM

Wednesday: No, not a miserable litany, but a gratefully received insight into how you are, dear friend, even though it is never as we wish. Also it serves as a reminder to us all to be aware of our bodies in total, our posture, our joints, our gratefulness for our apparent good health.

From one who needs to be reminded, and 'self remind', daily, to avoid back ache, neck ache, and all sorts of indulgence!

Julie M

    Denis Wright September 22, 2012 9:24 AM

    Thanks, Julie. For the moment at least it seems to be helping. The increased exercises aimed at better body symmetry, I mean. I don't keep slumping to the right in the chair as much, or as quickly, but at the same time this depends on a lot of variables each day.

    Some but not all of this came about in the healing process after the fall. ["The Fall" makes it seem like I'm reading Paradise Lost or something. It would be nice to move on quickly to Paradise Regained!]

Sunday, 26 August 2012  9:00 AM.

I suppose it's not such a great start to the week [or end to the  weekly roundup] to have to say that I got a seizure at 6 am today. It wasn't a strong one and the most affected area was the right arm but it travelled through the right side completely, very mildly. The odd thing about the mild ones down the leg is that they seem to do nearly as much damage as the strong ones. The whole thing was over in 90 seconds, but somewhat disturbing was that for the next ten minutes my whole right side was having minute seizure-type activity. That's unusual.

In a way it didn't surprise me as I'd felt restless for some time before and uncomfortable, often but not always signs of an impending seizure. I went back to sleep by 6.30 am and woke at about 8.30am. It's about 12 days since the last seizure so it was getting due, but the frequency seems to be increasing. I am reluctant to increase any medications if I can help it.

Tremors of the right arm and leg seem to be more of a problem. I've had feet and ankle swelling which remains to now. This I don't understand in the sense that there seems no immediate cause. I also had a severe right leg cramp midweek which lack of body flexibility meant I couldn't control the way one normally would with a cramp, so I simply had to ride it out.

So, feeling good at one stage through last week has swung round, as is inevitable when things deteriorate. Nevertheless although this looks a litany of complaints, things are holding up OK as we come mid-cycle.

COMMENTS:

Anonymous August 28, 2012 8:59 AM

Never good to hear about a seizure. Must be such a horrible experience. And a cramp you couldn't ease- ow, painful! Was Tracey there to grab the cramping muscle -perhaps not, if you had to ride it out.I wonder if some magnesium phosphate (tissue salts) would help. It does for me, also for any kind of stomach cramps or upsets. It helps relax the muscles. You might know about that from your physical training days.

JulieM xx

 

Anonymous August 28, 2012 9:02 AM

PS - yes, I know, it's irritating when people make suggestions! who don't understand all about your medications.

    Denis Wright August 28, 2012 9:57 PM

    No, Julie – I've never minded suggestions about medications, although I do mind when people suggest something and then they get offended if I don't do as they suggest! And you've never been one for that.

    I appreciate that advice. I think it's the same effective treatment that someone close to us uses when he gets severe leg cramps – or used to. This has happened only once and I was totally unprepared for it. I am very wary now of stretching the leg first thing before I'm going to get up. But if I develop a pattern of getting them through the night then I'll certainly take up with the GP the treatment for it that's best suited to my circumstances. [And while I've got you here, thanks for the delicious pawpaw!]

Thursday, 23 August 2012 8:54 AM.

A warmer day today and much more comfortable. The Rhinocort [over the counter, not the high end prescription stuff] seems to have stopped the hayfever dead. I've been having a bout of sneezing at least once daily for quite a while now but barely a sneeze since snorting the Rhinocort.

The recent blood test showed that as a result of increasing the Dilantin dose slightly, the level has gone from a very low 25 up to 60.  Best zone is usually regarded as 40-80, but we've also found that levels shoot up at the higher end and I don't function well beyond 60, so we need to watch that. I strongly suspect the smaller seizures I have been having were related to low Dilantin level.

I've been increasing leg exercise designed to get the right leg into proper walking alignment. I think the compression fracture of the spine altered my gait more than I suspected and if I don't try to rectify it now then I'm destined to drag the leg more and more for the rest of the time I'm mobile. It's not easy and requires a lot of concentration.

Tuesday, 21 August 2012  8:52 AM.

Chilly last night! The temperature dropped to -3°C. We walked round the block – the short walk – just to see how things would go. Stamina for that distance is OK, though it's impossible to make the right leg do what it should most of the time. All the Cootamundra Wattles are blooming madly.

An unexpected problem revealed itself. I had the worst attack of hayfever I've experienced in years. I suspect those wattles; they've done it before – but there are plenty of other pollens about and it promises to be a busy spring for the bees. Having been indoors for some time I wasn't aware of the pollens I'd breathe in during an outside walk.

If the past is any guide, Rhinocort for a couple of days will deal with that. We'll see. I'm trying not to add other things to the medicinal brew if I can help it.

My head seems clear since Avastin last Friday, apart from when the sneezing hits! Not today so far....

Sunday, 19 August 2012  9:21 AM.

After a smallish seizure mid-week, something of an eventful ending to the week, best described here. Walking continues to get more difficult and I am struggling now to retain some level of fitness. I don't think my memory is any better or worse. I'm not sleeping as well as I was; more random sleeping times. The cold, windy weather which is not unusual for this time of the year adds to the difficulty. I hope it warms up a bit soon.

Friday, 17 August 2012  7:16 PM.

I've just woken from a long post-Avastin sleep. So yes, I did have the infusion but it was a toss of someone's coin who holds my life in their hands. I'll describe that in more detail elsewhere for any interested parties, but the short version is that I've had another possible 3-week 'reprieve' from a journey down a track we've been avoiding for 33 months now.

I feel better for the sleep. More by and by on that decision that had to be made when the coin landed on its edge.

Here's the more complete explanation .

Wednesday, 15 August 2012 1:58 PM.

I had a seizure last night. This time I felt it coming on – the strange dead weight of the arm as if clamped in a vise, and the stiffening feeling down the right side – and didn't waste any time getting to the bedroom to lie down, Tracey on hand.

I expected it to be a big one, for some reason. Maybe I am just a bit more focused on the signs on one approaching. As it turned out, that wasn't the case. It lasted only about 1-2 minutes and was fairly much limited to the right hand and wrist. It didn't seem to want to go into the leg.

I put it down to the fact that we were only two days or so away from Avastin the day after tomorrow. I wonder if Avastin will reduce the tremor effect in the right side generally. I guess we'll have to wait and see. I'll be shocked if there's any problem with the protein count, but these days I've learned to take nothing for granted.

Monday 13 August 2012 8:10 PM.

A brief report on the Oncologist visit today. Sticking to neural-oncological matters, there's not a lot to say that we weren't aware of. Studying the scans and with the report on the MRI at hand, he was surprised that inflammation had increased, given that the tumour seems to remain reasonably well "walled off". He felt that the cystic growth within the tumour area was likely to be more a sign of tumour stability than anything sinister.

He expected what we could call a 'normal' decline in the physical areas we were all too aware of [walking and balance], and was very pleased to see, considering the 18 month MRI gap and the three month one since our last consultation, that I'm still around. [Not half as much as I am.]

As he said when we left, the main thing is - do not fall over.

As to the variety of pills and drugs, his advice was very strong. He didn't use the exact words, but it was "If it ain't broke, don't fix it." There's such a variety of drugs balanced very finely that changing the mix for some experimental reason is, in my case after nearly three years, playing Russian Roulette. And it's my brain the gun points out, so we aren't going to be cavalier about it.

We knew that. In spite of my comments on Clexane dosage and bleeding, we've said that to each other scores of times over the past 2.5 years once we seem to have got it as right as we're likely to.

Sunday, 12 August 2012 8:45 AM.

Another Pleasant Valley Sunday, so the song goes. It's not unpleasant – overcast and cool, but not the foot-chilling, brain-chilling days at least.

Things go along in a sort of drift, almost as if we're waiting for something to happen. It's a bit like living in Tokyo or Christchurch or on the San Andreas fault, only the tectonic plates are on the inside. So you never know when, how severe, or the post-quake effect.

Tremors of the right arm, and sometimes of the leg, are proving more inconvenient than any seizure. Try tying a shoelace with an arm spasming like that. It's worse in cold weather. Balance? Let's just say I have to be more and more careful, especially when I just get up and concentration may be at its lowest.

It's an oncologist visit week and an Avastin one; both on Friday I think.* Recent dates and times don't stick well in my head. I know – everyone complains of that, but there's something different about losing trust in your memory of mundane things that's really disconcerting, when you know it's likely to get worse.

But... we take advantage of what we have. The sun is trying to break through out there.

9:25 AM. 

Annoying! Just as I posted the above, I absent-mindedly scratched an itchy spot on the right arm and felt a kind of bubble, which burst under the pressure and the blood poured out, soaking that part of the sleeve. Tracey's put a patch over it and I hope it's stopped bleeding, but it's really itchy still.

I see quite a bit of blood these days. It makes me wonder about the Clexane dosage. The oncologist may have some advice.

These little things signify deeper changes to body chemistry. That's what makes it difficult. There's no training manual with this condition, because every case differs and the treatments are ad hoc.

* Tracey just reminded me that the appointment with the oncologist is tomorrow, not Friday. See? See?!!

Thursday, 9 August 2012 9:07 AM.

Unbelievably, we are almost into the end of the week. A lot of blotches broke out on the right arm and wrist, a couple extending to the hand. These seem to come out nearly simultaneously about a week after Avastin, can be quite sensitive to touch [and can bleed even with  gentle rubbing with the towel as after shower last night] but fade towards the date of the next infusion. It's almost always the right arm area, even though I've been very careful not to bump it on furniture etc.

I don't understand why it is just in that area, but we've pondered this before. The effect is greater each time. It's entirely painless.

I had a headache last night and took Panadol before bed; first time in weeks. It's gone, but my head's a bit foggy and vision slightly blurred. I've been sleeping well enough.

I've tried to maintain an exercise regime and feel happy enough with  that. I can get down to the floor in stages with a lounge chair in front of me, do exercise, and get back up again the same way. Right side movement seems to be getting more limited, but I am constantly battling against that.

Sunday, 5 August 2012  1:41 PM.

Weekly roundup has come again in a blur. One seizure was the most significant thing for the week, but I'm determined to get as much mobility back as I can. I don't like that tremors or muscle spasms, which occur particularly when it's cold, are becoming as inconvenient as the legacy of a seizure.

I decided to try a new tactic with the circulation problem. I guess it seems obvious enough now I say it, but things creep up on you. The more I artificially heat my body, the less efficient it becomes at doing the job itself. That's hardly an epiphany, but important to consider. So I've turned off the heater in the study, which I was increasing the level of heating gradually, and when my feet get cold, I exercise until the circulation gets going.

When I don't want to stop writing, this taking a ten-minute break is harder to do than it looks. It takes a discipline I've let slip. I haven't been doing enough legwork.

Although it's a bright sunny day out, there's a nasty westerly blowing. I don't want to shuffle about in that. It will warm up soon. For the moment there are many exercises I can do inside – and I have been doing those, but maybe not enough for the legs though. We'll see how it goes in the week to come.

My feet are freezing. Time to move....

Friday, 3 August 2012 10:06 AM.

I am struggling to regain strength in the right leg and to stretch its muscles etc back into position, and to walk so the foot is oriented properly. It's very easy to get into the habit of walking badly just to cover the distance between two points as quickly as possible.

Last night I almost came to grief again in the bathroom simply by turning around at one point and the right foot not responding. I overbalanced and saved myself by plonking down ungracefully on the toilet. It was lucky I happened to be in a position to do so, or it would have been hello floor again, virtually at the same place I came down two months ago and did all the damage.

This makes me aware that on my feet I cannot relax for one moment but focus fully on what I am doing. No mental wandering!

Comments 2-15 August 2012:

learnearnandreturn August 2, 2012 7:08 PM

Dear Denis, do you remember me? Marion Nothling then, I think, now Marion Diamond. You left U of Q to work at UNE in the 1970s, so it's a very long time ago. But I've been reading your blog for awhile, and just wanted to touch base, and say how sorry I am.
    
Denis Wright August 5, 2012 7:38 PM
Yes, Marion, I remember you very well indeed, in the good ol' days of QU's History Department. It's really wonderful to be able to say hello once more. If you'd like to email then put a dot between my first and surname, and add gmail.com [I'm just making it harder for the email address harvesters by putting it this way, as you'll realise.] I'd love to catch up a little.

Anonymous August 6, 2012 10:27 AM

I admire your resolve with not using the heater. I've been finding the Armidale winter really abysmal and have a lot of aches and pains myself -it's necessary to exercise MORE in winter but there's so little daylight or reasonable weather (ie not freezing windy or drizzling)whinge whinge. Do you still/ever get outside for a walk?

We're in Byron Bay just now for the writer's festival :D 

love, Julie xx
    
Denis Wright August 7, 2012 9:33 PM
Hi Julie M. - I hope you're enjoying the festival if it's still on and that the coastal warmth is making things feel good.

You're right that it's vital to exercise [full stop!] but in winter it surely helps circulation. I am finding that my body is doing at least as well, or better not using artificial warmth here in the study – though I love the fire in the lounge and will go there very shortly – before I respond to Julie L's comment in fact! My feet are warming faster and staying warm in bed too. Interesting.

There's definitely more daylight and I just want a little more warmth in the sun and less chill in the breeze before venturing out again. Call it being a wuss but I have an instinct about these things.

Cheers!

Julie Lake August 6, 2012 9:20 PM

Oh dear Denis, the dilemmas you have to face daily are enough to drive anyone nutso! The most ordinary actions are fraught with danger and I think it's marvellous the way you have coped with it all for so long - and kept your sense of humour! What you obviously need is an expandable office chair that at the merest touch of a button or lever could collapse (slowly!) backwards and become a bed! I wonder if anyone has thought of inventing such a thing. I wouldn't mind one myself, come to think of it. Good for a post-prandial snooze when I get tired on my computer. Keep your chin up...provided you can do so without falling over! lots of luv and thinking of you always
   
Denis Wright August 8, 2012 12:09 AM
No sense of humour, no point, is there?

Good thinking about the office chair, but one flaw in the idea. I would need to be strapped in, or a rail mysteriously appear along both sides - top half anyway. If seat-belted in, I'd need it to be all velcro! No way to buckle up once a seizure started.

Troublemaker, aren't I? There's always something that complicates matters. Maybe I just shouldn't have seizures.

Thanks for the encouragement and kind thoughts.

Anonymous August 12, 2012 11:56 AM

Hello Denis on this mid August Sunday!

It's good you can ask the oncologist this week about the avastin dose. As for forgetting what day the appointment was, it may be true you are less alert to remembering such things, but as I imagine you are not the one 'in charge' of daily affairs, especially those relating to the external world, it is perhaps not something that you feel a need to keep on your radar. You know Tracey will, so you spend your mental energy elsewhere. We are similar in that Michael takes charge of things like car regos, so I lose track of when they are due. 

I'm not dismissing your feeling of memory loss. Just...it's easy to lose track if you don't have to be engaged with the world's calendar. Heavens -there are more interesting things- and you find those!

Julie M xx

Anonymous August 13, 2012 9:22 AM

Woops, I see you meant the Clexane dose may be checked with the oncologist! Tracey reminds us that there is no change ever to be made on the avastin one. My mistake.

Julie M.
  
Denis Wright August 14, 2012 10:04 AM
No problems! Yes, the Avastin dose is fixed by body weight. I know that still has an element of trial-and-error in it, but any tinkering with what works would be asking for real trouble.

   

Wednesday, 1 August 2012 8:50 AM.

My body is settling down after yesterday's seizure. I'll gradually get back some of what I've lost, providing we get another lengthy period seizure-free. Nothing else to report on the medical front except for swelling again in the right hand, foot and ankle. It's not a great deal but it often happens round the time of a seizure. The weather has been very cold. Minus 4°C and not much above freezing now. It doesn't help with blood circulation.

Tuesday, 31 July 2012 10:09 AM.#

Yes, fate couldn't resist the middle paragraph of my last entry on Sunday. Exactly two months to the day, I was sitting here after having done some exercises and I felt the seizure coming, rapidly, and I knew it was going to be bigger than any I've had in a while.

This is my dilemma now. I am safest during a seizure when lying down, and I feared falling out of this office chair. Should I stay here and try to hang on, or make it back to the bedroom? I decided to go. Standing up and starting to walk I could feel it already in my leg, which was very dangerous.

I know, I should have called loudly to Tracey and Christian, but I just wasn't thinking. That's another thing. In a seizure I don't always act logically. So I hobbled back to the room as fast as possible, scared I was going to get caught on my feet halfway back, in exactly the same way I fell the last time in the bathroom when I fractured the vertebra.

I guess adrenalin got me back on the bed and I rode out a seizure that was much more in the right leg than I can remember. The post-seizure paralysis was 'normal' in terms of time to recover.

I'm not sure how we can best deal with a sudden onset of seizures when I'm not in the best place to cope with them. We have to think about that.

Sunday, 29 July 2012 10:24 AM.

The Avastin blotches are reappearing on my right arm after Friday's infusion. I feel alternate bursts of energy and deep weariness, usually within hours of each other. With the weariness comes head fuzziness and not surprisingly, a desire to sleep. I'm yawning already.

In the weary periods I can barely lift the right leg and arm, but it's two months since what I'd regard as the last serious seizure. It will happen again, but I don't care if I tempt fate on this.

Still, things are manageable. If I were in constant pain I'd have something to moan about. If I couldn't talk with Tracey and Christian, and think, and write, then I could whinge. I can do all those things, so I can but be thankful for that.

Let's see what the week brings.

COMMENTS

    Anonymous July 31, 2012 3:23 PM

    Denis what's to dilemmabout? Get on the nearest thing you can't fall off (hint: that would be the floor) and then either wait it out, or wait for White Queen check, or hit the buzzer on your 2-way if you have time.

    I remember my wife hated my constant checking, and general hanging about, so that was the rule. At least if you can get on the floor you can't fall down. Might be uncomfortable, but way better than any alternative.

    And I'm sorry to read that you've had to go through that again. Best wishes.

    kvd

    Denis Wright July 31, 2012 7:35 PM

    Ahhh – thanks for this comment – as it makes me realise how easy it is for someone, even with long caring experience, to misunderstand the problem totally. It gives me the opportunity to explain things for others to whom it must be just as, or even more incomprehensible, and to highlight the fact that every case is different. Briefly it's this.

    1. A seizure affects the entire right side, giving me no full control while it's happening over any part of the right side of the body. If I can get to a safe spot in the first 20 seconds before it interferes too much with other brain function, then that's the time to act. Even then it's a risk.

    It would appear to anyone who's never experienced a focal or more general seizure that it's simply a matter of my controlling things during the seizure with the strength of the left side, but that doesn't happen. I know from my previous experience that I could fall off an office chair during a strong seizure as easily as if I were riding a bicycle.

    2. When you say 'get down on the floor', with one side in seizure, you might as well say 'do a cartwheel', because there only one way I can get down on the floor and that's the way it happened two months ago – to crash down in a fall, and on a hard floor that could be as disastrous as the last time, if not more so.

    I'd happily go down prone on the floor if I could get there without breaking something. But as I said, brain function becomes irrational at lightning speed – what we'd call on a computer 'kernel panic'. One problem locks up the rest that's operating more-or-less normally. If I had a 2-way I would probably not rationalise where it was or in the circumstances what to do with it.

    This change to more severe is relatively new, complicated for the first time by stronger tremors or spasms as well, and things happen that I haven't yet adapted to. It's just so happened that on these two occasions, I've been alone and in the worst possible place and time.

    Yes, expert general help is on tap, and we will readily call on it.

    So that's the dilemma. I'm pleased to be able to make things clearer. I make the mistake of assuming people all see the variables in my case, and that's a silly assumption.

Anonymous July 31, 2012 8:31 PM

Sorry Denis. Misunderstood your comment about 'should I stay, or make it to the bedroom' as an of the moment thing, rather than an after the event thought process.

kvd

    Denis Wright August 1, 2012 8:05 PM

    Nothing to apologise for at all. On the contrary, the perfectly logical thought you had gave me the opportunity to describe the illogicality of actions under the influence of 'Brian' damage.

Anonymous August 1, 2012 12:38 PM

What about a soft armchair in each room -would take up less space than a bed in each room. you could sort of fall into it with (hopefully) no damage.

Wish we didn't have to discuss such issues at all..

Julie xx

    Denis Wright August 1, 2012 8:19 PM

    So say all of us on your last point, Julie. Keeping things in proportion, this stronger seizure event has been only twice in two months, and never before in a place where I wasn't comfortable or where help wasn't right at hand. The chances of that, in our experience, were incredibly low. In scores of seizures I've had previously, there was always safety.

    But please be assured that we are open to suggestions and that we've learnt from these two events. There are simple avoidance measures we are taking to decrease them even further.

Friday, 27 July 2012 6:09 PM.

It was last Tuesday that I posted here! There was nothing to report but usually I say so a bit more often. Now there is a little news.

The Avastin treatment went well, with a routine procedure. The protein count was wonderfully normal for me.

I do tend to zonk out suddenly after an infusion, and have just woken up, wondering why it was so dark and realising that it wasn't morning.

Afternoon sleeps seem so deep that I feel many hours have passed and it must be a new day. I'm rather pleased when I do realise it isn't and that I have an evening before me to do things.

The days, too, are getting longer. It's 5 weeks after all since our shortest day of the year.

Oo bla di....

Tuesday, 24 July 2012 9:11 AM.

It's as good as it gets. My back continues to improve and my head is clear. I seem to be sleeping well enough. Also, I haven't had what I regard as a serious seizure since 31 May.

On the debit side, in spite of exercise, balance and walking get worse day by day, and right side tremors increase. I really can't see how I can halt this process.

I will have Avastin on Friday – presuming, as always, that the protein count is satisfactory.

Sunday, 22 July 2012 9:55 AM.

Weekly summary time. In one way, there's nothing to report, really. Fundamentally, things have gone along their course of no seizures but increasing tremors in the right arm and leg, and slow physical decline that seems to be accelerating. Mentally, things are a bit harder than they were, as words I want become more elusive and thoughts a little more difficult to phrase in words and clear sentences.

Of course, it was the week of the first MRI in 18 months. I've decided to write about that on the main part of the blog, and that's what I'm starting as soon as I post this. In one sense, it's a bit of a let-down as a tale, but as people have been asking, I've decided to write what we know.

Don't hold your breath. You'll be no wiser at the end of it than we were, but at least you'll have a better idea of why none of us will be. It may not be worth the proverbial two knobs, but you'll at least see why I say this.

OK – It's done now.


Friday, 20 July 2012  6:34 PM.

Much as I'd like to be able to, we simply don't have any clearer picture of what the changes showing up on the MRI compared with 18 months ago mean. It may even be impossible for anyone to draw clear conclusions.

This isn't an attempt to put off posting 'bad' news. It's an attempt not to lead anyone astray with false analyses or predictions about what's going on.

Thursday, 19 July 2012 3:40 PM.

We're back from Tamworth. The MRI itself went normally. We have the scans but the report wasn't ready, so it will be sent directly to the oncologist and GP.

Usually the scans have been relatively simple to interpret, but this time we don't know enough to be able to do so. It's essential to have the MRI report properly analysed by those who know exactly what they're talking about to relate it to the scans.

It would be silly of us to guess what the images from today's MRI  mean and to speculate on it. We'll pass more on when we know.

Thursday, 19 July 2012 8:24 AM.

We'll be off to Tamworth shortly so that I can have the MRI. This won't tell us exactly what's happening in my brain cavity, but should give us strong clues, as I've said before.

I had persistent headaches yesterday that I'm putting down to some apparent stress about what we may discover today. This morning it seems to have lifted somewhat and I feel quite good.

I'll leave any more comment until we do the MRI and get the images, which are usually ready within an hour; so we have lunch in Tamworth, and then go back and get them. Possibly the written report will be there too but it hasn't been vital in the past. We'll not open them then but come back up the big hill, have tea when we get home, and see what prize is in the packet of images.

Just repeating that whatever we see, it is very unlikely to change treatment; just perception of a number of things about the future. And the latter is a very big thing, as you can imagine.

Monday, 16 July 2012  2:58 PM.

I have little to report today except for an increasing weariness of body and mind as the days go by. My right leg in particular seems less and less responsive and I feel less like trying to make it work.

We have days like these. The -5°C temperature this morning doesn't help. Still, I've written most of a blog entry that's been a long time coming [not this one!], have read and emailed and otherwise communicated with friends. But I have to sleep soon – and see if I can warm these feet!

Sunday, 15 July 2012 9:24 AM.

The week has ended better than it started as far as medical things are concerned, though I wouldn't go so far as to say they are on an even keel. My main concern at this stage is that Tracey gets better.

We go to Tamworth for the MRI on Thursday. We'll try to report on how we see the inside of my brain cavity through the revelations of the MR-eye. Whatever it reveals, it's unlikely to change a great deal about how we manage things for the moment, but let's see what the grinding, clanking MRI Monster has to say.

Friday, 13 July 2012 8:32 AM.

Given that date, superstitious people should stay in bed! It's raining gently and I love it because the air is warm[er] and my feet aren't freezing.

Tracey wisely went to the doctor for treatment for this flu which is sweeping the country at the moment. She is one of the >30% highly susceptible to its complications, pneumonia being the most worrying one. She's been given appropriate antibiotics and a good nasal spray to allow her to breathe through her nose a bit for the first time in days. I'm not keen on the fact that she has to go out in the rain in a few minutes for a postponed-once-can't-be-put-off-again dental appointment.

I seem to be one of the 70%+ whose defence against this flu hasn't been breached. I am well enough, though getting about is increasingly challenging, and I have no desire to test it elsewhere right now. Minimal headaches, back healing slowly but surely, no other aches and pains to speak of.... things could be worse.

It's really wet out there.

Wednesday, 11 July 2012 9:29 AM.

OK, I'm going to say it, and to hell with fate. The period of wondering if I'll get this horrible flu is officially over. I haven't any symptoms of it at all, but I swear that Tracey took on a double dose, one of them being mine. And my head feels pretty good today. It's not even fuzzy, yet.

I remain concerned about my right side from the waist down. Walking without an arm or something within reach of my left hand to steady myself is an increasing challenge. Walking to the study with a cup of tea in my left hand – the only one I can entrust to be steady/strong enough to hold it – is a trek demanding concentration. There's a little ledge on the floor in the doorway between kitchen and hall, maybe a centimeter high. I have to stop and think carefully how to negotiate it to avoid tripping. Hard to believe, I know.

Hard for me to believe. But it's a good day so far. That's what we do. We take it day by day.

It's spitting rain. I can't say I mind; the sharp cold the frost or the westerly wind brings freezes me. I'm happier with this.

Tuesday, 10 July 2012 9:52 AM.

Tracey has improved a bit and the sneezing/nose-blowing rate has declined, so I'm glad of that for her sake [not so much as she is!]

I woke with some of the symptoms of the start of this flu – which fortunately or otherwise are close to those I get through the three-week Avastin cycle – but having got up and sternly lectured myself, seem to have abated, and I am left with the foggy head syndrome that is par for the course with this condition. Contracting flu remains the biggest concern for me at the moment, though I am hoping heartily that Tracey doesn't have a relapse.

On the debit side, my right leg seem to be getting weaker daily. It's not, of course; it means that fewer signals are getting through from the command centre up top. The MRI on 19 July will probably tell us more about what's going on there.

Comments:

Bob Lake July 8, 2012 9:09 PM
Get well soon Tracey - screw your courage to the sticking place ... and keep yourself in the clear, Denis. Love to you both.

Denis Wright July 12, 2012 6:40 PM
Thanks, Bob. I'll report on Tracey's trek to the Doc this afternoon separately, and it was necessary and productive, though there's still a long way for her to go. I remain ok, fate notwithstanding.

 
JoanJuly 12, 2012 10:45 AM
So glad you haven't got the flu, Denis. I trust Tracey is over the worst of it. You won't get it now.

Stay well and watch your step. I trust you've considered using a cane now and then, although I know it has meanings for you that don't apply to others. I've had friends who've used canes from as early as their 30s, and once they got over the psychological implications, found it far more easier and less painful to get around independently.
 

Denis WrightJuly 12, 2012 6:59 PM

Thanks, Joan; as I said to Bob, I'll mention Tracey's condition separately. Even from a purely selfish point of view on my part, her health and mine couldn't be more closely related, especially with colds and flu.

I'll certainly take advantage of every device that will make my walking safer. I have no pride or vanity problems in that respect. I can't afford to be silly about it, because another bad fall would have implications for me far worse than the fall itself, as the previous incident gave us a glimpse of. 

My special difficulty with most devices is that they make use of the one free arm and hand that I have, and no-one who has continuous use of two arms will appreciate this fully - particularly when a leg seizure can strike suddenly and with force.

Adapt, adapt.... I know only too well. Every day creates some new challenge, often undoing the last adaptation.



JoanJuly 13, 2012 10:15 AM
Yes Denis, I thought of that after I'd pressed the "submit" button, but it was too late to clench the buttocks. The fart had flown. :)

I realised after I'd said that about canes, that a cane turns the arm into a surrogate leg, which is just not going to happen given your arm on that side. 

Anything that could help you move around and keep your muscles working would be a blessing. I know you're considering all your options. A giant baby-walker? :) 

I have a cold, again, but mercifully, it did not turn into that dreaded flu. I'm sorry to read that's what Tracey has. I'm surprised that the dentist will treat her in that condition. I hope she doesn't come home with a fat lip, too. Oh dear. It comes all at once sometimes.
 

Denis WrightJuly 14, 2012 12:30 PM
:) Because it's my blog I can't be sure of this, but I think [could be wrong] the writer has the option to delete and repost an altered copy [if they've saved it first!] – but to be truthful it didn't matter a bean and if someone else had also thought of that, you gave me the opportunity to say something about it. It's not a silly idea, after all.

A giant baby-walker... oh lord, now you really are scaring me, though your tongue's in your cheek and your buttocks are clenched! STOP IT! Just get that image out of your head. :) The problem is with the concept [never knock a concept...] is that there has to be good space to move in, and most devices don't fit the architecture of this dwelling.

All went well with the dentistry. Careful precautions were taken all round. If it wasn't done then it would have been a month later. In fact, it had to be done then. Tracey is recovering from the virus, but it's a slow process

JoanJuly 14, 2012 1:10 PM
Actually, I've always thought those baby things looked like a lot of fun -- jolly jumper, walker. Yes, of course I was joking. I think where my mind was taking me was far more scary and I needed relief.

Right. I do remember now that I can delete posts and will do so in the future. So the clenched buttocks are not the last but futile resort after all.

Off to Gunnedah tomorrow to beat on a rock for 3 days, weather permitting. Glad to hear Tracey's rounded the corner and will be feeling much better very soon.





Denis WrightJuly 16, 2012 2:22 PM
My girls loved walkers, though apparently they are classed today as a no-no – something about stopping them walking properly. Rubbish to that I say. They're both distance runners now so so much for that from my stat sample of two.

I really wouldn't worry about deleting/resending comments if I were you. I think I know pretty well what you mean.... I've also left stuff there I know I could have put better. 

Have fun rock'n'rolling in Gunnedah.

AnonymousJuly 16, 2012 7:05 PM
"I have little to report today" - so how's Tracey bearing up? Never mind your minor, sundry problems; 'flu is/can be very debilitating.

With best of wishes, and hoping at least your sense of humour remains intact.

kvd
 

Denis WrightJuly 17, 2012 2:54 PM

Hah hah! Don't worry. Humour unimpaired. I always assume the best intended unless otherwise proven. You're right. 

Tracey continues to improve. Any rumours of the death of either of us are greatly exaggerated. [You may just have heard of that line somewhere before.... Don't you hate plagiarists?] 

AnonymousJuly 17, 2012 7:26 PM

Well that's at least some good news on the carer front. I don't mean to suggest that it's important - except, as you'd know, and have said - it is.

Hate plagiarists? Yes, but only as much as I hate those (unnamed few, looking at you) who can spell it proper at first attempt.

Take care.

kvd




Denis WrightJuly 19, 2012 9:04 PM

I suspect you left a 'not' out of the second sentence, but I get it and can only agree heartily re the carer, even from a purely selfish point of view.

Hey I do grammer proper two, as well as speling.



 
AnonymousJuly 20, 2012 8:51 AM
I'm still not sure that a walker wouldn't work. They go on carpet and turn on a pin and are so easy to manipulate (have to be ,for frail 80+ people) that I would have thought you could get it over your room divider pretty easily. Still, I imagine you tested all this. They help with carrying things too. I suppose you have had an occupational therapist come in to to assess the house and make suggestions? I think you did, ages ago..

Waiting with the rest of the crowd out here to hear the MRI report -guess it may not be till next week now.

Julie xx
 

Denis WrightJuly 21, 2012 10:11 AM

Julie - thanks for this. We aren't ruling out any options, believe me. Right now the problem isn't so much the walker or the house and I probably should have clarified this. It's more the problem of a very unstable right arm, and every walker is geared to having pretty equal control with both arms. [And legs for that matter]. That makes negotiating objects the problem.

It's a bit like the wheelchair – if I can't use the right arm, then I can only go round in circles! That gets a bit boring. 

No, it's a question of stability really, but if things change then we'll reconsider with open minds.

LenaJuly 22, 2012 2:12 PM
Thank you for telling us Den, keeping us up to date. Love to you all Lena XXXXX

Monday, 9 July 2012  5:01 PM.

The girls have left and a text from Sylvia says they are safely back in Melbourne. I had a small seizure about an hour later; restricted superficially at least to the right hand. Seizures are so directly connected to stress with me; there must be chemical imbalances in the brain caused by things you expect or might be expected to take in your stride, but I am always on a knife-edge.

I've had a headache for the past 24 hours to varying degrees but it's impossible to know if it's just the 'normal' tumour headaches or something else coming on. The flu that's going round starts with a headache – but I'm not going to talk myself into anything. It feels no different from those I get from time to time every 3-week cycle. I refuse to get this flu!

Tracey is still knocked over from its effects on her but is just starting to pull out of it. It affects the entire body system but is mainly headache, sneezing and coughing in a manner so demonstrably ghastly that I've redoubled my determination not to get it. I will rest more.

So, the house is pretty much in lockdown till we get through this. We have developed ruthless procedures over 30 months that minimise contagion and contamination especially for me, given the severity of the consequences, so they are back in force.

Sunday, 8 July 2012  10:30 AM.

Me, I'm OK. The unfortunate thing towards the end of last week was Tracey's catching a very nasty flu in spite of all attempts to keep it at bay. She's feeling pretty wretched, apart from the general reasons why people feel bad with a full-on dose of flu – the fear that I will catch it as well, and therefore the need to be even more careful than she always is. (I don't see how that's possible, as she's spent the last two years or more with a hygiene regime for the household that has so far kept me free of any form of infection since this whole thing started in 2009.)

So we ride this one out. I have been through several cases of both Tracey and Christian having bad flu over the last two years and not getting it. That's involved Tracey washing her hands more times per hour than Lady MacBeth and wiping down every utensil before I come into contact with it. I don't know the state of my immune system now but... so far so good.

I'm just sorry that she's got such a vicious dose of it.

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.

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.

Comments

Bob Lake July 1, 2012 9:48 AM

Well done, Denis. We are all pleased to hear of any improvements.
 
Joan July 1, 2012 10:21 AM

I'm really delighted you are walking outside again. I was worried we'd seen the end of that.

Take it easy. I've never had a broken or fractured bone, but I understand they take weeks to heal properly. I stubbed my toe recently, and that took several weeks to heal, and it wasn't even broken.

    Denis Wright July 7, 2012 12:31 AM

    I haven't walked outside much since, for a variety of reasons, but have every intention of doing so now that today's treatment is over. You're right, Joan, about the healing process, and age is surely a factor.

    I guess it's a matter of Watch This Space....

Ros July 2, 2012 6:58 PM

"Diamonds"...and "stones"....come to mind.
I've only just "discovered" you (thanks to my dear friend, Jill) and your writing. And here another thing comes to mind: something to do with a "magic wand".

    Denis Wright July 7, 2012 12:37 AM

    Dumbledore? [Hardly!] :) Thanks, Ros - and I'll reply to your letter soon. Your [and Dave's] comments elsewhere on the blog have been hugely insightful.

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