Saturday, 31 December 2011 11:45 AM.
Late to sleep last night, late to get up, and the girls have arrived for the day. So we went for our walk. Yesterday I could barely walk properly, for some reason, and according to Alice's iPhone, were 4 mins slower than the time 2 days before. My leg just wasn't cooperating. Today, we smashed my PB by a minute! It makes me wonder why. There are plenty of variables, but I suspect daily walking no matter what plays a big part.
So, New Year's Eve. Wishing all the best for 2012. I am OK!
Thursday, 29 December 2011 6:58 AM.
It's an absolutely glorious day out there today, clear, sunny, with the temperature outside sitting on 10ºC. The Queenslanders would be complaining of the cold as this is the midwinter temperature in Gladstone. Just a week and a day after the last Avastin hit I think its benefit is at its maximum for the cycle. It allows me to feel stronger physically and with that comes a better all-round feeling of well-being. (What's the word for that? eu-something... not euphoria. Nor euthanasia! This is an example of my memory problem, see? The right words just don't come freely and I have to fill in the gaps later - if at all.)
The girls and I walked yesterday round the course you can see if you scroll down. It's not far off 2 km. Pathetic though that may seem, it is the limit for me at this time, and the three steps from front yard up into the house are a struggle.
Balance remains the main problem on these walks. If there is real deterioration showing up in any area apart from memory or mental clarity, it's in this one.
Sometimes I feel that while the Avastin holds the worst effects of tumour activity at bay, i.e., the brain inflammation that leads to more and worse seizures, it can't prevent the insidious creep of its influence into what is presently mainly motor activity affecting the whole body and not just the right side. Maybe I'm wrong and it's only the right, but it doesn't feel so.
I am more and more convinced that those who suffer from any sort of brain related disease have got to keep up a physical exercise regime as one of the chief ways of combating it. It can be a bit tedious, but it's vital.
Wednesday, 28 December 2011 7:35 AM.
I'm in one of those patters where there is no pattern to my day, or not much predictability. I went to bed late and expected to sleep in, but instead found myself up and moving at 6.30 am. This means that I will probably get tired in a couple of hours and sleep. But that's OK. I am feeling well enough and things will settle into some more stable routine in the New Year unless things change rapidly, which is always on the cards.
In the meantime, we take each day as it comes. I am sitting with no shoes on and light clothing. I know I will get cold soon from physical inactivity, even though we are well into summer.
Tuesday, 27 December 2011 10:15 AM.
I suppose it's fair to say we are in the post-Christmas torpor phase of the year. I'm tiring easily but at the same time I can feel some kick now from the Avastin a week ago. Christmas indulgence, very restricted though that was, does seem to produce lassitude. Sugar in refined form offers food to the tumour more than to any other part of the body, but Christmas is Christmas and this must be a good one, so compromise is necessary.
We'll walk again today. I'll sleep, and read, and we'll do family things as the days with the girls rocket past. I don't have any other obvious problems worth complaining about.
Sunday, 25 December 2011 5:26 PM.
All's well. Christmas dinner preparations are well in hand. I've rested (slept!) most of the afternoon.
Compliments of the season to everyone!
Friday, 23 December 2011 8:50 AM.
I slept soundly and have no dramas to report. The skin on my arms is unduly sensitive - as it often is after a dose of Avastin. The slightest bump causes minor bruising under the skin. I'll try not to bump into things, but with poorer balance and distance perception, that's not as easy as it sounds.
My girls will be boarding the train in Sydney right now and will be here, if the train's on time, at 6.13 pm today!
Wednesday, 21 December 2011 3:20 PM.
As I wrote to family just now....I'm happy to report that everything went perfectly with the infusion today. The head White Witch found the vein with no trouble and things went well from there, even though for the first time that I've had one of these infusions, my right arm gave me all the signs I might be getting a seizure. It didn't happen. I was so determined it wouldn't that it makes me wonder sometimes....
I'm feeling weary and whoozy now so I'll sleep for a while.
Tuesday, 20 December 2011 6:50 PM.
Just reporting that I feel better following my early morning seizure. A good afternoon sleep improves things. So, good evening!
Sunday, 18 December 2011 1:15 PM.
I've been lax owing to staying up for a very late movie, so now I pay the headache price. Karma.
Looking at the week, I can't complain. I had no seizures and am hoping to complete the cycle that way.
We walked this morning and I'm now ready to sleep, though I've not been up long. If I'm stopped from walking, I get very shambly in walking, but if I don't miss more than one day, my gait improves significantly. I still do other exercises to keep back strength, which is critical, and improve the usefulness of stomach muscles. Ignoring that increases hernia risk; something I never thought about in my life before.
If I have any real concerns they are over balance, which seems to be getting worse while some other functions are improving slightly.
My feet and ankles seem free of swelling this morning. The moment temperature and humidity go up, that seems to have a negative effect on this. Tinnitus is less. I think that's because of more consistently good blood pressure, mainly from the walking.
So ends my medical report! It's a pass. Maybe even at Credit level....
Friday, 16 December 2011 9:10 AM.
Once again, steady as she goes. Let there be nothing to report but utterly boring stuff!
Thursday, 15 December 2011 11:45 AM.
Nothing to report, except we've extended the walking trail. I wish every day were suited to walking at the time we want to walk!
Tuesday, 13 December 2011 9:30 AM.
The sunshine that began the day is quickly changing to drizzly clouds. I hope still to be able to go for a walk anyway.
A doctor's appointment is scheduled for this afternoon; just a routine one to reorder supplies of medications and have a check. The doctor won't find anything much different to the last time I went, I believe. I've been free of headaches for some time (touch wood!) The thing that hasn't improved which I had some hopes would is balance. Sleep is irregular but I'm doing a lot of it. That's galling as it reduces the time I'm awake, but far better than the alternative.
Monday, 12 December 2011 9:15 AM.
I think I've been doing a bit of catch-up sleeping, having woken at nearly 9.00am. It's days like these I am glad I don't have a 9 am class on Buddhist philosophy.
As you can see, I've nothing that needs reporting here, so I'll just go back to writing about mushrooming!
Sunday, 11 December 2011 8:55 AM.
I should be - and am - happy with weeks where things flow along without major hiccups. I'm grateful for the times when life rolls along without incidents I'd rather not encounter. This was one of those weeks.
I've had no seizures since 22 November - getting on for 3 weeks. I'd like to last a whole 3-week cycle, but that hasn't happened yet. Sleeping patterns have been unpredictable, but that's not new. Things fall out of recall, which is very annoying when you're writing! I was just about to make a point, but it's gone now....
I've not had real headaches in this time. A few stabby shoots of pain sometimes hit, but they haven't lasted. My left arm, which was causing some trouble, is still not right (hah!) but it is better.
My weight seems to have stabilised, but at this point I think is about 10 kgs too high. Whatever I try to do about that fails, though I think I could do better with walking if the weather was more conducive to it.
Today seems like a good day to walk!
Saturday, 10 December 2011 2:55 PM.
Unbelievable! It's halfway through the afternoon and I haven't written here yet. It's raining and cold again yet most of Eastern Australia seems in a heatwave.
Anyway, after a two minute nap yesterday round 5 pm, I stayed awake till I was tired, and slept very well. I may try the same trick today! It worked for Salvador Dali after all. Why not for me? I'll write about Dali's trick. **adds to list**
I'm OK.
Saturday, 10 December 2011 2:55 PM.
Unbelievable! It's halfway through the afternoon and I haven't written here yet. It's raining and cold again yet most of Eastern Australia seems in a heatwave.
Anyway, after a two minute nap yesterday round 5 pm, I stayed awake till I was tired, and slept very well. I may try the same trick today! It worked for Salvador Dali after all. Why not for me? I'll write about Dali's trick. **adds to list**
I'm OK.
Friday, 9 December 2011 8:45 AM.
It's warmer at last after three successive days with the fire on. I intend to resume walking today, which I've been missing very much. Atchoo x 8! Everyone's complaining about hayfever this year. I have a short succession of sneezes that seems to dislodge whatever's been building up in the sinuses overnight, and that's usually it for the day, even without medication.
I had a restless sleep after going to bed in the wee hours this morning. That just seems to happen sometimes. It's annoying because it leaves me feeling sleep-deprived and there's much I want to do in my waking hours. Perhaps the walk will help. I've been doing whatever other exercises I can, and the pain in the left arm is not so troublesome now.
Thursday, 8 December 2011 11:40 AM.
Nothing worth reporting. Maybe that's news that's worth reporting!
Monday, 5 December 2011 8:40 AM.
I woke early. There's nothing special to report. I think the left arm pain is easing if I don't type too long. I've maintained exercises, trying to focus on more body symmetry as I suspect that's why the slightly odd stomach region shape. The right side muscles have been weakened through the original brain damage and seizures but more importantly, I think, the messages aren't getting through at the same level as the normal ones on the left. This creates sagging, especially with increased body weight. I'll walk further, try to exercise those diaphragm muscles and be extra careful with diet.
Such are the side-effects of brain malfunction, muscle weakening, and medications. But apart from that, I'm travelling OK.
Sunday, 4 December 2011 9:20 AM.
Weekly review time. I have whinges as you'll know if you happen to have been following this part of the blog and can see as a more complete log if you've a mind to; I don't know why you would, but it's there.
I still have the annoying left arm pain but I think it's subsided a bit. It's no worse anyway. The Avastin infusion might be starting to kick in positively. Sometimes for the first few days it seems to have a negative reaction and this was one of those cycles. The time since the last seizure has stretched out to a fortnight, which is good. I haven't quite made it to three weeks - a whole Avastin cycle - for many months. The most recent seizures haven't been bad ones.
We have been walking when we can though the weather has been against it this past week - a very wet one for several days. It looks a glorious early summer day today though some might think an overnight minimum of 6˚C isn't summer!
I think we'll need to have the doc check out some strange stomach area right side swelling that we've been noticing. Is it fat, water retention, organ swelling, bad posture caused by the seizures, or something else? There's no pain involved.
I am getting rather good at diagnosing Doc Martin's patients before he does. That's a bit of a worry! ✌ Self-diagnosis is always a bad idea....
Saturday, 3 December 2011 10:45 AM.
I had a rather disturbed night, sleeping fitfully and ended up waking very late by my standards. It's this left arm, dammit, which is aching like hell.
I think I brought it on myself, as I said yesterday. The real culprit may have been this, which is essentially one graphic image that I created in Photoshop, my beloved program that really needs two hands to work with. Long periods of stasis to create the layers and manipulate them have, I suspect, frozen some of the muscles right up the arm.
If that theory's right, then it should come good, as long as I stick to simpler things and give it a rest. My much loved Photoshop, used for hours on end a couple of years ago to create posters for shows, theatre programmes and newsletters... I must forgo.
A couple of years ago.... to this very day, my world changed forever. But here I am, contemplating Christmas, against the odds. Let's not complain, but be grateful for that. No-one could feel more so than I.
Friday, 2 December 2011 8:40 AM.
I should be delighted when this part of my blog is the most boring, and I am. If it's boring then there are no major medical changes I can detect. There are only a couple of whinges I have in that department; a constant ache in the left arm when I sit at the computer, akin to RSI, and the fact that we're running out of places on my stomach to stick the daily needle in.
The ache could indeed be a sort of RSI, given the time spent on the computer, writing and reading. I think the arm needs more support, somehow. Or maybe I put something out when I did some different sort of exercises. It's getting to the stage where it needs sorting.
There's not much that we can do about the needle injuries on and under the surface, Tracey is as expert at doing the job as she was from the start, but there are veins just deep enough under the surface to be undetectable, and the fluid injected into the tissue changes its qualities. Consequently, sometimes an injection is painless and at others hurts like blazes (wimp!) If any seasoned veteran has clues on this, let me know!
December 2011 Comments:
December 2011 Comments:
Julie said...
Why are you so often going to bed in the wee hours of the morning lately? I always thought the natural dark/light cycle was meant to be the most healthy for the human body..but then, you seem to be pretty well (all considering!!) so maybe it's OK for night owls!
December 9, 2011 1:02 PM
Denis Wright said...
I have to go to bed when I feel tired. If I go earlier, there's no point. Luckily my reckless, carefree life of idle luxury allows me to sleep whenever I want!
December 10, 2011 12:29 AM
Bob Lake said...
Glad you're having a good day, Denis. Your mention of mushrooming reminded me of my childhood in wartime England, and a haiku in which I tried to capture the moment. (It means something to me, if nobody else!) Morning mist with Dad mushroom rings warplanes overhead
December 12, 2011 10:44 AM
Bob said...
Sorry Denis, I cut and pasted an earlier draft Morning mist with Dad Dark wet grass and mushroom rings warplanes overhead
December 12, 2011 12:50 PM
Denis Wright said...
I enjoyed the haiku, Bob. Perfect form as well! It will mean a great deal to Tracey's Mum, who vividly remembers the warplanes - and probably the mushrooms! - overhead. She grew up in Kent during the war. It may even have been in Ramsgate, a place I know reasonably well from living for some time in Westgate-on-Sea and working at the Uni of Canterbury - also a lovely place. Thank you!
December 14, 2011 8:07 AM
Julie said...
I wonder what happened about the swelling on one side of your stomach? Did it subside? How's the skin going? Wonderful (fingers crossed) about the headaches not being there. I've just managed to shake off one I've had for the last week and it's so nice to be able to SEE again! Avastin day?
December 14, 2011 2:58 PM
Denis Wright said...
Doc doesn't think that it's anything to worry about - just as self-diagnosed, weakness of muscle on that side. I am working on strengthening it. He feels there is nothing going wrong with internal organs, which I was more concerned about. It sounds like you had some sort of migraine - are you prone to them? I never suffered one and don't want to. No, Avastin Day (it sounds like a religious festival, doesn't it?) is next Wednesday. The skin is blotchy with red spots but not exactly falling apart! Maybe I need a magic mushroom.
December 16, 2011 9:06 AM
Lena said...
I remember bluebell woods and cherry orchards! Ramsgate beaches cordoned off with barbed wire! Everything painted 'battleship grey'- the only paint available!
December 18, 2011 5:41 PM
Denis Wright said...
What? Not even Bridal Path Tan paint?
December 19, 2011 10:16 AM
Anonymous said...
wishing you a merry christmas dennis and your family.Enjoy and have a great day,and i still pop over here to see how you are doing.You are amazing really.Take care and keep doing what your doing and enjoy the holidays with family and friends and don't drink too much alcohol...lol. from jayne
December 21, 2011 7:43 AM
Anonymous said...
That's a pretty long walk! How many steps, Tracey :) Julie
December 22, 2011 11:32 PM
Denis Wright said...
Thanks, Jayne. I wrote a reply to this two nights ago, and it's disappeared. It's probably a mistake I made late at night, writing it and forgetting to send. Yes, it happens.... I'll definitely have a glass of champagne and, at the right time, sip half a glass of good red. That's about my limit. What a bore!
December 23, 2011 9:04 AM
Wednesday, 30 November 2011 6:50 PM.
The Avastin infusion went well. I slept after we got home and feel refreshed. There's nothing else - no significant changes - to report.
Sunday, 27 November 2011 12:50 PM.
The week just gone has been a bit up and down with a shot of Avastin to come next Wednesday. Plotted on a graph the waves would not be too rough. I'm feeling that the Avastin is continually losing ground - which is to be expected. We haven't been able to walk much with the wet weather but hope to pick that up this week.
Less than a month till Christmas. There are always goals to aim at.
Saturday, 26 November 2011 10:10 AM.
The rain, it raineth every day. So it seems in our part of the world. Maybe it's a case of
The quality of mercy is not strainedIt droppeth as the gentle rain from Heaven
...as it's indeed gentle rain and I feel in a position where mercy has been (temporarily at least bestowed). All is going quietly, just as I would want for now.
Friday, 25 November 2011 8:30 AM.
Ditto for yesterday really, though missing our walking because of rain. For the first time last time I was able to talk while walking instead of having to concentrate on every step, eyes focused solely on the ground ahead.
I hope the weather clears up soon so we can resume. In the last few days finger twitchiness on the right hand has developed but I have found that if that is a precursor to seizure, getting up and moving round seems to settle it for a while.
I have added different exercises to try to free more movement in the right arm. Sometimes I'm shocked at how little movement I have in some directions in the right arm compared with the left.
Thursday, 24 November 2011 8:57 AM.
Cruising on a drizzly sort of day.
That is all. A perfect prognosis for the day so far!
Wednesday, 23 November 2011 9:30 AM.
It's always good to report that there's nothing to report on the medical front. It looks like we're in for some rain again though!
I slept very well. That's it. Steady as she goes....
Tuesday, 22 November 2011 7:50 AM.
I'm paying the penalty for not having a daytime sleep yesterday. I didn't feel tired enough and I had things I wanted to finish. So I went through the day, promising myself to take an early night.
But I didn't get that far and round 9 pm I felt a seizure coming on. It wasn't a big one, mainly hitting the fingers and arm of the right hand. The strengthening of fingers I've been doing is a two-edged sword. It helps manipulation but when the tumour takes them over it gives them more strength to fight with. It left the hand crumpled and paralysed for some time, but it's slowly straightening out. Control is something that the brain has to take back subconsciously.
A lot of small skin lesions have broken out on the right arm. These are not serious in themselves; just a sign of system decline with the side-effects of Avastin. They are under the skin surface so don't actually bleed most of the time; more like blood blisters. Painless. But I do sometimes wonder how long or if they are going to be restricted to the right arm or skin tissue.
Apart from that, no real problems. Walking is going well. I simply have to make time for a daytime sleep so that the brain cells recharge and are in a position to fight for the disputed territory. Brian is a relentless neo-colonialist, that's for sure.
Monday, 21 November 2011 8:55 AM.
I must break this cycle of going to bed too late, and then waking later than I want to. By the time I've eaten something with medications it's nearly 9 am. Then I have to make choices in what I don't do, and there are many I want to. But it seems a pleasant day, and I've woken with no aches, pains or alarms.
I'm happy to feel a little strength returning to my right arm for some actions. For others it's as weak as a baby's. There's even some hint of returning biceps and triceps, which in my former existence were always pretty sharply defined.
We walked yesterday and I'm always better for that. It's taking a long time to build some basic level of fitness but it's vital, even with three steps forward, two steps back. It's the forward bit that counts.
Let's not tempt fate by saying or hoping too much. I always end up with a slam to the floor when I do that.
Sunday, 20 November 2011 8:55 AM.
I've woken late; 8:30 am it was. A sunny, windy day. All is going quite well; no dramas.
As I look back over the week I realise that there have been small ups and downs but nothing to get excited about either way. That's rather how I like it. My biggest grumble is feeling that I'm sleeping too much when there are so many things I want to do!
If that's the worst thing in my life right now, then I'm content....
Friday, 18 November 2011 6:45 AM.
It's raining as I begin this. Drizzly rain - and by the radar we'll have it at least the entire morning. I woke early from odd dreams, with twitching fingers. I can't say how long they'd been doing that, but not long I suspect. Usually that indicates a seizure is coming, but I knew it wasn't; it was over. The moment passed.
It was enough to jar me awake though, so I did some exercise and here I am. I'll eat and take medications in a few minutes - it's a bit early now.
Otherwise, I'm OK. I feel tired and my sleep pattern has been disturbed. Very likely I'll be back in bed by 9 am, especially with this rain.
Thursday, 17 November 2011 9:25 AM.
I promise to try to write here at the same time (more-or-less) each day that I do write! I am so easily distracted....
I don't have any perceptible medical changes to report. I'm trying to convince myself that my right arm feels slightly lighter today but I suspect I'm kidding myself. I'm enjoying the warmer weather, but the desire to sleep creeps up on me like a thief.
I'm holding a rubber ball in my right hand and squeezing it every now and then. The palm feels very hot, but that has nothing to do with the ball. My hope is to keep the fingers more supple.
Tuesday, 15 November 2011 11:15 AM.
I had a minor seizure last night, after thinking nothing seemed in the offing. It only affected the right hand, part of the arm and for a short time. What surprised me, I must admit, is that it seemed to set things back nearly as much as a more powerful one.
We'll see how we go with a walk, shortly. The picture shows (yellow) the size of the first walks, then (blue the next extension, and (red) the distance now walked. I really can't do more than this right now. By the time I get home I can barely make it up the 3 stairs.
Sunday, 13 November 2011 9:35 AM.
Weekly report. It's been an up and down one - more unstable than for a while, but this is not the first instance. Today I feel much better than I did yesterday, which ended with quite a lengthy headache of several hours, before and after sleeping.
The lethargic feeling before that is related to the approaching headaches, it seems. I suspect (and should expect) that there are times my whole system gets out of whack, given the constant medications and the infusions. There's no sensation of impending seizures.
I'm hoping for a week of more stability, and weather we can walk in. Today it is very black as a storm rolls in.
Saturday, 12 November 2011 7:00 AM.
All is OK. Several times now at this point a few days into the 3-week cycle I get a feeling of lethargy and lack of motivation. This is one of those times - nothing going wrong but nothing to feel enthusiastic about either.
It passes. We walked yesterday after some days of being prevented from doing so by the weather. The right foot wasn't responding as well as it has been. Perhaps it will be better today. I have exercised but feel tired.
Sometimes the sheer daily fight becomes wearying.
Thursday, 10 November 2011 5:00 PM.
Yesterday's Avastin infusion went well, apart from some difficulties for the inexperienced nurse finding a decent vein. This resulted in a bit of blood on the chair, the floor and me, but the problem is that the usable veins are getting harder to find.
Since then I've felt more stable though more lazy. I have to reverse this lethargic attitude to take advantage of the stable periods. I felt as if I had lead in my stomach this morning. That feeling went away with activity. I've had no more arm pains, so that I think was purely physical. I still can't believe I can't raise a 1 kg weight right up to full stretch with my right arm, and lower it back down behind my head. Work is badly needed improving that mobility.
Tuesday, 8 November 2011 10:00 AM.
One whinge this morning. I was woken in the small hours by a pain down the right arm - severe enough to keep me awake for quite some time. I don't know if flexing it and moving it around did any good or it was going to go away anyway, but it did. I was doing exercise with light weights yesterday, trying to improve arm symmetry.
Having gone to bed (too) late, this interruption to sleep doesn't help.
I think my overall twitchiness may be do to the fact that I'm in the pre-Avastin period, the next infusion being tomorrow. Yes, it's come around again! Let's see.
Monday, 7 November 2011 7:37 AM.
My body was feeling twitchy this morning when I woke, but that seems to have settled after exercises and medications with some food. I feel it's very likely that I'm having mini-seizures in my sleep - perhaps as I awaken. I'm sure there's a sleep cycle in which my brain is especially vulnerable.
It's a theory. I am aware that something is going on, and it's not limited to the right side. At this stage, it's more like small tremors.
Often two seizures have come relatively close together. I had one on 4 November. Perhaps another is on its way. Who can tell? Otherwise, I've no complaints. It looks like a glorious day and we will probably walk later.
Sunday, 6 November 2011 11:13 AM.
Nothing to report today, except that I woke early for no good reason and will probably crash early - before afternoon.
That is all!
Saturday, 5 November 2011 9:45 AM.
Things have stabilised again and I'm ready to start again on the rebuilding process - the mental one more than anything else. As I've said before, sometimes it's not the physical damage so much as the awareness of what seizures symbolise.
Friday, 4 November 2011 7:00 PM.
Dammit to hell and back. I was rudely woken just as I was about to drop off to sleep at 4 pm by a vicious seizure of the right hand and wrist that went down the right leg and has basically taken out all the work done on both limbs since 12 October - the date of the last seizure. I can never quite make it through a 3 week cycle without one or two.
The problem is that with the strength I've built up in the right hand over past weeks, and with the increased walking, the muscles have strengthened, so now the uncontrolled messages to the right side during a seizure create rather painful chaos for the limbs. It's not pleasant seeing your hand behave like a caged feral cat and feel afterwards like someone has taken a baseball bat to it.
I got up and managed to shower afterwards, picked myself up for the 200th or so time physically and mentally post-seizure, and here I am. The only way to go is forward. The limbs may recover some of their improved dexterity.
Regroup. It could be worse. It's just another reminder that it's going to continue and has to be dealt with every time as circumstances dictate.
Wednesday, 2 November 2011 9:10 AM.
Before yesterday's appointment with the oncologist, it had been four months since my last visit. In order to report to him on my condition during that period it was necessary to go back through those four months of WHAT'S NEW! postings.
I realised doing that that I write too much and blather on in these postings, so I've made a new resolution to keep it short and to the point.
Let's see how that holds up.
I realised doing that that I write too much and blather on in these postings, so I've made a new resolution to keep it short and to the point.
Let's see how that holds up.
1. Oncologist visit - basically our reporting to him. As there are no dramatic changes, it's a case of steady as she goes until or unless we hit some crisis point. He's pleased with how I'm going.
2. I tend to waken after each sleep period with a 'hangover' effect. This is resolved only by getting up, exercising and taking medications with food. Now, e.g., after being awake an hour, it's nothing more than a dull fuzziness.
That's inflammation in the brain. I don't sleep quite enough.
3. We extended the walking a little - just 200 m or so. It strengthens the legs and releases endorphins - the walk, I mean. Brain, heal thyself.
Sunday, 30 October 2011 6:15 pm
Looking back over the week from the medical point of view, I only get second billing. That's a mixed blessing. We know where we stand when I'm the problem child. But when it's Tracey.... I think I prefer it to be me.
We know better what's going on then. When it's Tracey, it all gets that much more complicated, and sorting out back pain is a slow process. It would be good if I could say it's all cured, but although it's improving, we have to wait and see.
For me, no seizures. I've had stability in most ways, and nothing too dramatic that I can recall. Memory's one of the frustrating things. I can't trust my short-term memory. The closer something is to the present, the more likely it is to drop out of memory. I know everyone has memory lapses, but I suppose the more things I cram into my waking hours, the greater the risk.
I've talked about this before, I'm sure. Well, I think I'm sure [see?] So let this be an end to that.
We've a visit to the oncologist on Melbourne Cup day, Tuesday. The chances of being in there as the race is on is strong! Want to bet? :) I don't expect to do more than have a check-up, but I'll write a review for him since I saw him last, about three months ago, I think. I ummm can't remember.
Friday, 28 October 2011 10:05 AM.
It's a glorious sunny spring morning here in Armidale. I'm feeling quite good, and Tracey is continuing to improve, but it's a slow process. Recovery from back injuries takes time, and resting the affected area is the best way.
I'm developing a silly pattern of sleep, and I'm going to have to address it. I'm tending to hit the sleep wall later and later, which extends the wake period into pretty anti-social hours. It means not being tired till about 2 am but then not waking till 8 am. By the time I exercise and eat some breakfast with medications it's after 9 am.
I want to check my email, the news, some unread articles. I want to write here on The Blob. It's well into the afternoon by then and time for a new round of medications and a light meal. A walk, another check of the email perhaps... twitter of course!.... and then it can be lateish in the afternoon, but I must sleep.
I may wake between 6 and 7 pm! Some exercise just to keep the joints moving.... Our evening meal, some TV - a movie we sit and watch, sometimes starting it at 11.30 pm or so, with a cup of tea and late evening medications.
That's where the 2 am 'bedtime' comes in.
But at least I sleep then, usually. I waken with the sun streaming in and the day starts again, half remembering strange dreams I now want to claw back into consciousness. How do I know they're fascinating, or were? I just do.
Usually I am going somewhere; a journey. Mostly I'm alone. Sometimes it's on foot, sometimes driving. I don't know where. Occasionally it's into some maelstrom - a violent storm, but not usually.
It's usually about people.
Sometimes I wake with the sort of headache you have when you just haven't had enough sleep. By the time I get up it sometimes clears. It's hanging around this morning, though.
There are quite a few red blistery patches on the skin of my right arm that have developed over the past few days. They're almost certainly side-effects of the Avastin I had last week.
It's strange that they usually develop there, on the right side. I can think of some explanations, but this is getting into a self-indulgent meandering.
The right hand remains slightly swollen, the knuckles always tight. That's a by-product of seizures. The right foot and ankle remain slightly swollen. Even with the daily injections of Clexane and the exercise, that doesn't change.
It's 16 days since the last seizure. Possibly I'm tempting fate by mentioning that.
The right hand remains slightly swollen, the knuckles always tight. That's a by-product of seizures. The right foot and ankle remain slightly swollen. Even with the daily injections of Clexane and the exercise, that doesn't change.
It's 16 days since the last seizure. Possibly I'm tempting fate by mentioning that.
BUT.... it really is a beautiful day. Christian better get on to that mower.
Wednesday, 26 October 2011 7:35 PM.
Somehow the day has flown by and I feel guilty not having reported to family how things are at the moment with Tracey.
After the visit to the chiropractor yesterday, Tracey is feeling much better. Far from perfect, but able to do things she had no hope of doing the day before. The pain was pretty shocking. The most difficult thing is keeping her from doing things for me that I can do for myself! She can't help herself.
As I said, I'm not a chiropractor man myself, but I bless him for cracking the bones back into place and sorting out the other bits and pieces holding them together.
Me, I'm fine. Doing well with nothing to complain about except the weather stopping me from walking outside. If that continues to be my worst complaint, then I can't complain!
PS I know there are some great comments on blog entries - they are appreciated and will also be responded to!
Tuesday, 25 October 2011 10:20 PM
I've been fine. Tracey has had a rough time. The sciatic nerve is obviously involved, so painful that she made sure of a chiropractor appointment this afternoon. She could barely stand. But the appointment seemed to have eased things and now she's doing the best thing and resting it as much as possible. Christian has been stepping in where necessary and all's OK from that point of view.
There's no guarantee that tomorrow will be better, but we hope so. It's a trying time for Tracey, who's frustrated that she can't do things she normally does. But there's no good reason to think it will be worse. These things need rest and peace.
We are able to do both. At least, I'm feeling more lively than for a year. It's an ill wind..... or horrible back pain.... that does nobody good.
There's no guarantee that tomorrow will be better, but we hope so. It's a trying time for Tracey, who's frustrated that she can't do things she normally does. But there's no good reason to think it will be worse. These things need rest and peace.
We are able to do both. At least, I'm feeling more lively than for a year. It's an ill wind..... or horrible back pain.... that does nobody good.
Happy birthday, Jan! I hope it's been a great birthday for you.
Monday, 24 October 2011 12:00 PM.
See this one
Sunday, 23 October 2011 9:25 AM.
Not the cheeriest of mornings at the JPW household, but that's got nothing to do with the way I'm feeling. I am fine – well, as good as I've been at any stage in the past 12 months. But Tracey was bending over in the garden yesterday afternoon, and yes – searing back pain out of nowhere, and for the past 18 hours or so, can barely get about at all.
Christian just happens to be away at the moment, so now our roles are reversed. We're not sure exactly what the problem is but of course these things happen on a Saturday afternoon, don't they? Christian can drive, but he's still on his Ls. I can't drive any more. Tracey at the moment would have trouble getting into the car. I doubt if a doctor could do anything anyway, at this stage. Tracey is on medications for her surgery the week before last and can't take any others for the back pain as they will interfere seriously with the ones she's on.
We'll manage. It's not a crisis, but if one or more of a number of things change then we'll have to really adapt until it's sorted.
In a weird way, it's made me feel more focused and capable than I have been for quite some time. Maybe I'm not – but it feels like it.
Friday, 21 October 2011 10:25 AM.
Perhaps I should simply leave any review till tomorrow, as there's not much I can tell. I'm slightly up-and-downy, in response to immediate things, but mostly up since the Avastin treatment. Sometimes the treatment makes me feel tired.
I'll take a longer view tomorrow. Oh, wait. Tomorrow is Saturday, isn't it? I had in mind it was Saturday today. That's what happens to me, see?
It's mainly steady-as-she-goes for the moment.
Wednesday, 19 October 2011 1:20 PM.
As I wrote to family just now:
It was a nicely routine visit to Oncology today to have my Avastin hit. It went smoothly.
I feel tired now but am planning a walk around the block before hitting the hay. It's a lovely day and looks like getting warmer towards the weekend.
I feel tired now but am planning a walk around the block before hitting the hay. It's a lovely day and looks like getting warmer towards the weekend.
Tuesday, 18 October 2011 9:10 AM.
Cool and sunny. We've had the fire on and probably will tonight, as it will be only one degree above freezing point.
I'm pleased to be able to report nothing of consequence. My head's relatively clear and I have no headaches. I don't feel fully rested though slept till nearly 8 am. There's tinnitus more in the left ear than the right.
I went through simple morning exercises to keep my right arm as operational as possible. Things very quickly deteriorate in terms of coordination if I don't do that. I'm sure my sisters, each with a physical challenge on one limb or another, find the same thing. Exercise it or lose it. I have some real strength back in the right arm, and with that comes the ability to straighten it out and get more symmetry.
It's still much weaker than the left but a lot better than it was. Last night I was pleased and surprised to be able to twist the right arm up my back enough to scratch an itchy spot! It's a long time since I've done that. It's probably a good exercise, actually.
Walking has also been easier, although I barely make it up the three stairs when we get back home, and I take a while to recover. But it's nice not to drag the right foot so much.
All this comes unstuck with a seizure, but at least it's now nearly a week since the last, with Avastin tomorrow.
I'd like to say that taking all into consideration, things are improving, but that would be kidding myself. Avastin has put the brakes on for a year so far, but there's slippage there and the general trend is downwards.
Still, it's manageable. The acceleration rate of decline seems small and the velocity seems constant, if we can use physics terms. My memory seems to be getting neither better nor worse, as far as I can tell. I am hardly the best person to judge that. Maybe I'm just getting more erratic....
It would take the view from outside to determine that. I'm not asking right now.
Monday, 17 October 2011 8:09 AM.
I didn't manage a weekly summary this week, but what I'm saying here sums things up well. Yesterday I felt great, and today I'm still OK, though woke early with a headache.
That seems to have cleared without extra medication. I've been writing and may go back to bed for a rest soon. I'll see how I feel after eating something and taking the morning medications, which are overdue now.
Let's see what the new week brings! Wednesday is another Avastin top-up day.
Saturday, 15 October 2011 9:11 AM.
A quick note to say that all is as well as it can be, after a good night's sleep. I started off writing this with something on the weather, and it has turned into something else, as you'll see when it's done.
It happens. But I feel settled this morning. That's good!
Friday, 14 October 2011 8:30 AM.
It hasn't been the best of periods for the past couple of days up to today. I sympathise even more with those who have recurring bouts of migraine as I start to understand the explosive feeling of headaches you can't escape from.
Those at least are over for the moment, and I realise that it is only a few days away from the next Avastin infusion. The time has careered away so quickly that it seems as if I had the last one only last week; yet it is two.
I will take it easy over the next days and rest up to see if I can hold off the headaches. I am sure people who suffer from migraine or other conditions that induce headaches have worse ones, but I would like to give the tumour as little chance as possible to expand its sphere of influence before next Wednesday.
For today, so far so good.... For a person who rarely had headaches in my life, except for the occasional self-induced one, I am a lousy patient - very impatient with myself and expect my techniques to overcome all problems. Some things are beyond control.
I've posted the next little segment of what I've written on Taoism and I hope you enjoy it.
Thursday, 13 October 2011 9:50 AM.
It's the birthday today of one of the most amazing people in the world - Elvie Brown. 91 years. Well, in the world of my sisters and me, she is. She's four days younger than my mother, and is my mother's niece, by marriage. They were more like sisters, and she was, in our extended family, like an extra mother to us as children, though technically we were 2nd cousins. Don't try working that out!
Happy birthday, Elvie. We love you. You'll be having constant phone calls all day no doubt and I'm almost afraid to add to them, because I know the effort each one must be for you.
Me today? Out of sorts. I slept badly for no particular reason and feel tired and unenthusiastic about most things. Brain fog has set in for the moment. Perhaps it's the downside of 2 seizures in 4 days, both physically and psychologically. Yet I don't want simply to go back to bed.
If I continue to feel like this, I will return to my bed anyway and see what happens. Maybe a walk would do me good.
I've had no seizures, anyway, though I feel like one's hanging around. This should be the best part of the three-week cycle for me. Maybe that's what's bugging me the most! I feel like feeling like this is wasting precious time.
Wednesday, 12 October 2011 9:20 AM.
Me, repeat after myself: I will take rest at some stage every day, whether I think I need it or not.
I didn't do that yesterday because I didn't feel tired. Logical enough, but I pass through a sort of time-body sleep barrier, and then go on till what is a normal bedtime for me, feeling pretty tired by then.
I settled down into bed but it was one of those nights where no position seemed comfortable, as if I had an extra arm and a leg to find a place for and nothing was fitting.
Then I had a seizure - hard to place on my personal Richter scale as it was intensely in the right hand and not as great elsewhere by comparison. It was a couple of minutes long, maybe three at most.
It left me feeling somewhat nauseous, which isn't usual. Sometimes these seizures grab the stomach muscles and internal organs on the right side, and give them a shakeup.
I eventually settled and slept. It's unsettling because, like an earthquake, I can't be sure if the aftershocks will happen - or indeed if a more serious one is to come.
I don't feel rested this morning. Maybe I will sleep not too much later. My body feels shakier over all.
It looks like a nice day for walking. The work I've been doing on the right hand - manipulation, picking thinks up etc - that's been put back by the seizure.
It could have been worse. The one thing that continues to puzzle me mightily in all this is: why, when for some eighteen months, every seizure was a daytime event, now each one happens in the night? I don't get it.
Me, repeat after myself: I will take rest at some stage every day, whether I think I need it or not.
I didn't do that yesterday because I didn't feel tired. Logical enough, but I pass through a sort of time-body sleep barrier, and then go on till what is a normal bedtime for me, feeling pretty tired by then.
I settled down into bed but it was one of those nights where no position seemed comfortable, as if I had an extra arm and a leg to find a place for and nothing was fitting.
Then I had a seizure - hard to place on my personal Richter scale as it was intensely in the right hand and not as great elsewhere by comparison. It was a couple of minutes long, maybe three at most.
It left me feeling somewhat nauseous, which isn't usual. Sometimes these seizures grab the stomach muscles and internal organs on the right side, and give them a shakeup.
I eventually settled and slept. It's unsettling because, like an earthquake, I can't be sure if the aftershocks will happen - or indeed if a more serious one is to come.
I don't feel rested this morning. Maybe I will sleep not too much later. My body feels shakier over all.
It looks like a nice day for walking. The work I've been doing on the right hand - manipulation, picking thinks up etc - that's been put back by the seizure.
It could have been worse. The one thing that continues to puzzle me mightily in all this is: why, when for some eighteen months, every seizure was a daytime event, now each one happens in the night? I don't get it.
Tuesday, 11 October 2011 8:45 AM.
All's peaceful in the JPW household, for the moment at least. It seems calm and sunny outside. I'd prefer not to have the ringing in the ears, but there are much worse things one might have to put up with. No doubt the week will race along with its usual breakneck speed and people will be talking about the number of shopping days till Christmas. Of course, with online buying these days, every day can be a shopping day!
Monday, 10 October 2011 7:20 AM.
As an antidote to yesterday's whinging, I can say that after resting yesterday and taking it easy, I do feel more stable physically today. I've had no recurrences of seizures and things are reasonably back to what they were.
There's really nothing more to do than dust off yet again and get on with the show. I woke early but then I also went to bed a little earlier last night. It seems that my body is now pretty well programmed to get x number of hours sleep and then wake, no matter what time of the day or night it is. I feel like getting back to bed now - and may well do that if the drowsiness persists. I do want to do a few things first!
I always want to do a few things first before sleeping again!
Sunday, 9 October 2011 9:47 AM.
Today would have been our mother's birthday. She'd have been 91.
A weekly roundup medically for the last week would have been simple. Stable in outlook, comfortable, if a little shaky on the legs in spite of a couple of walks.
That was, till 2.30 am today, when I was hit by a seizure slammer. It was fairly strong and lasted an average sort of duration - let's say 6.8 on the scale.
What was different about this one - though it's happened once before a few months ago - was that it was followed by a long series of small aftershocks throughout the body. These I hate, because they are more general in nature. And again, happening at night, they make sleep impossible, because with every one, I jerk back to full consciousness wondering what's in store. I did finally get back to sleep, rather fitfully (what a pun!) until about 8.30 am. I can't say I feel rested.
So the new week has started badly. As usual, I try to figure out if there was anything I might have done to trigger these events. I just never know. We did go out to the play on Friday night, which for me is a marathon event. In a spirit of adventure, I did have a taste of a liqueur that would amount to a tablespoon of it when we had tea afterwards with Jackie and Austin. Oh... I did have a strongish half-cup of coffee at interval during the play. That evening I would have had more sugar than usual in what is a very low sugar diet. Still, I slept very well on Friday night.
I didn't sleep throughout entire Saturday, as I didn't feel tired. I still went to bed after midnight last night, as I didn't feel tired. I had been getting a build-up of small signals yesterday that a seizure might be on its way, but didn't believe them. Maybe I should just have rested when not feeling tired anyway.
Maybe there's not a thing I could have done that would have made a tap of difference. BUT every seizure lately has been associated with recent alcohol, however tiny the amount, brewed coffee, a little sugar, friends' visits and outings of one kind or another. A combination of these seems to have an association with seizures. Singly, they don't seem to be directly related to them. Apparent symptoms may be either causes or effects.
I just don't like the more general tremors throughout the body while trying to sleep after the seizures, the buzzing head and the swollen right foot this morning. That always reminds me that Brian's lurking there, waiting for his chance to dig the hooks further in.
Back to bed after this, I think. I feel very tired - but at least, I do also feel that there are no seizures coming in the immediate future. Let's hope it's done its dash and I can get back to comparative stability as the week goes by.
Friday, 7 October 2011 9:25 AM.
All's well in the James-Pearson-Wright household. Tracey is off to the dentist. Christian is getting over days and nights on SES callouts during recent heavy winds and rain. I'm doing better than last week. Quite well, I think, apart from some unexplainable stabby pains on the right side of my head. If anywhere, I would expect the left. But they go away.
At last it looks like the sort of day we can walk later, if Tracey is up to it after the attack on a sore tooth.
I wrote a story this morning, one I didn't expect to, but it's come out OK. It will take some time to add a few bits, but I think you'll like it.
Wednesday, 5 October 2011 10:43 AM.
Daylight saving has really mucked up sleeping patterns in our household. As there's no kid to get off to school and wake at 7 am, it can be 9.00 am before I hit the deck. That's if it isn't 6 am! Our bodies are still on AEST. When we go to bed at 2 am now, our bodies say it's just 1 am.
This means I am behind with my writing. I'm always behind with my writing, which means I have the desire to say more. That's good. You'll know when I don't want to write anything that things are seriously different.
I have nothing to report, medically, except for a feeling of comparative well-being. With kinder weather, the walks outside do nothing but good. Keeping the right mindset, mental and physical exercises counter much of the negativity that creeps in so easily. My head feels clear after waking late and I have no aches and pains worth grumbling about. I think that this is a pattern for me after about 5 days since an Avastin infusion.
Sunday, 2 October 2011 11:55 AM.
Last week was not a 'normal' week (whatever that is!) with Alice and Sylvia being here, yet on the medical front there isn't that much to report. There were no dramatic events - Avastin infusion.... I can't ask for more than a certain degree of stability. I know the last report I made reflected a certain degree of negativity, but seems to have passed for the moment. Who knows? Tomorrow I might be complaining again.
I do know that the walks make me feel better. We've increased the length so it adds maybe 200 metres to the route (it seems more!). By the time we get back I have had enough. When I feel like we could push it a bit further we will. Exercise is so critical to a feeling of well-being.
Let's see what the coming week brings. The weather is STILL grey and freezing. I find myself resenting this.
Bob Lake said...
Denis, it would be fatuous for me to comment or sympathise but I really appreciate the regular updating on your medical condition and your feelings about it. Please keep it up.
October 1, 2011 9:14 AM
Bob Lake said...
During the space of two days, I made a mess of recording Julie's favourite TV programs (Poirot and the No. 1 Ladies Detective Agency). This did not sit well. I couldn't get it right. I phoned the retailers, then the manufacturers of the recorder. The last one said: "but haven't you adjusted for daylight saving?". He then talked me through the procedure on TV settings, and peace reigns again in the Lake household.
October 6, 2011 8:15 AM
Denis Wright said...
Bob: I woke at 7.00 am, which seems to suggest my head has adjusted at any rate. But I thought you lived north of the border, where you don't have it? By the way, you can see these programs again on iView, if not through the recorder as I don't know what type it is, or directly on the computer. They do take some of your Download allocation, but I m not sure what sort of plan you're on with your ISP. http://www.abc.net.au/iview/
October 7, 2011 9:37 AM
Friday, 30 September 2011 9:40 AM.
For some reason I woke at first light and couldn't get back to sleep. Usually I get up and do things on the rare occasions that happens but I felt too tired. So now I know how insomniacs must feel - awake and incapable of sleep, but too tired to get up. Frustrating!
I seemed to have periods of breathlessness lying in bed - as if no matter what, I couldn't get enough oxygen in my lungs. I did some exercise for a while, tried to find a sleeping position where my lungs didn't feel crushed, fussed over the fact that the knuckle of the little finger on my left hand felt arthritic and swollen, exercised it for a while, and drifted off into sleep for an hour or so. (I don't want anything going wrong with my left hand!)
I'm a bit headachey and still feel tired. Sorry for the moan, but we've noticed that on some occasions for the first few days after infusion I've been unstable physically. Who knows? There may be no real pattern to it at all.
On the bright side, Sylvia brought home a few nice prawns from the fish man who comes up from the coast to Armidale (and some excellent barramundi) and I was able to peel the prawns using both hands near normally. That's a big achievement for me. Wonderful what motivation can do!
The girls go home tomorrow morning on the train. We'll miss them very much. It's sunny and windy here after yesterday's downpour. I hope we can go for one last walk around the block today.
Wednesday, 28 September 2011 1:20 PM.
We've just returned from Oncology at the Armidale hospital. Very busy down there.... they're doing a lively trade in chemotherapy. Every chair is taken. I'm so happy that I simply get one shot of one drug - Avastin - every three weeks. There's no chemotherapy involved any more. It makes life simpler.
It all went very well. I've come home, had a salad and midday medications, been speared with a sharp of Clexane, and now feel very weary. It's now turned into a cold grey day. I will sleep in a few minutes, probably for the remainder of the afternoon. I'd like to do many other things, but sleep on demand is a priority.
We won't walk outside today. That's a pity, as the walking has been helping. We'll return to it.
Tuesday, 27 September 2011 8:30 AM.
September is careering towards its ending and we are almost in the last three months of the year.
I don't have anything to report except a vague headache, a little-finger-right-hand-twitching, some right ankle swelling and a few minor aches and pains that come and go. This is probably the junkie needing his hit tomorrow. I hope to ride out the day without having a seizure. A walk and a rest are on the agenda.
It's bloody cold again. Come on, Armidale, really warm up a little.
Sunday, 25 September 2011 7:40 AM.
It’s medical roundup for the week time! It’s exactly a week since the last seizure, one I feel was pretty much self-induced by avoidable factors. Maybe it was a good lesson. I do always try to learn from what seem to be mistakes.
I’d have to say that I felt better last week than for some time. Warmer weather, walking outside, spring in the air, no head pain, not too much fuzziness.... reasonable sleep. How can I complain about that? Even the backache which appeared for a couple of days has now gone. My right arm is performing probably as well as it is going to – certainly better than in 18 months.
I am not tempting fate by saying this as it’s not looking towards the future; just a review of the past week, and nothing can change that. I come into an Avastin week – next Wednesday – feeling quite strong. This time in the 3-week cycle I am usually wilting seriously, but not so far.
The applecart could be upset instantly by some out-of-the-blue event as has happened so many times in the past, but right now it’s wending its way through the ruts on the road and the wheels haven’t fallen off, even though they can get a bit wobbly at times.
And there are so many things I want to write about. All in good time, if time is allowed by what controls the order of the universe and the cells in my brain.
Friday, 23 September 2011 8:30 AM.
For the 9-5 workers, there’s probably TGIF in the air again. Thank God It’s Friday! In a way, it doesn’t make much difference to us, yet it does in the sense that another week is coming to a close.
I’m feeling good for the moment at least, though things can upset my equilibrium. I almost did it myself turning around in the kitchen when the right leg wasn’t obeying orders and didn’t move. I see now why old people are so much in danger of falling.
But apart from that, my system is functioning quite well under the circumstances. The walking outside, though quite strenuous, is great value in all respects.
The girls come tomorrow. It’s an Avastin week next week. So far the batteries are holding out. In the meantime we take advantage of the things to be grateful for while they last.
Wednesday, 21 September 2011 10:20 AM.
A late start for the day, but not for any sinister reasons. I'll explain them elsewhere. I'm feeling quite OK and the back pain has eased. I slept well enough and am read to do a few of the things I planned! Let's see how that turns out....
Tuesday, 20 September 2011 7:30 AM.
Nothing of major consequence to report. I am annoyed that I'm suffering from lower back pain and I suspect it was from some exercises I was doing. It's no worse this morning so I'll just ease back. I woke very early but am going back to bed for a rest now.
Monday, 19 September 2011 9:33 AM.
 |
| The Birthday Girl! |
We made it! A bit battered and bruised I am, but Tracey and I share her birthday today, the one we were certain 15 months ago that was not going to be possible for us to share. Obviously there are times when it's good that nothing is certain in this world; at least in the shorter term, though death and taxes will indeed catch up with us all.
It's a really glorious Armidale spring day and we'll try to make the most of it. I'll probably need to sleep for some portion of it, especially as we have our own evening planned and that is our best time. Evenings, I mean.
What's below doesn't really go with what's above, but that's how life is right now!
I've had no more seizures. I don't feel as if I will for today at least. Some dizziness, some vision impairment that still persists, and the feeling that I need to enunciate each word or the sibilants will disappear.
One good thing - and this may be of interest to those on Avastin or those caring for them should they encounter it - the largish black blistery spot on my stomach has disappeared. Ten days ago it was starting to dry out, but it was very black, like Eric Olthwaite's Mum's black pudding for those of you who enjoyed the Ripping Yarns series. One day, I touched the spot through my shirt and realised that something was different. Inspection revealed that over the past few days it had been healing underneath and was nothing more than a large pale red spot, which will disappear too in time. I say this because others being treated with Avastin might develop a spot like it, and be worried about it. In itself, it's not a serious problem. Just leave it well alone, and the body should heal it.
Much as it's a day of birthday celebration (it's also my niece's birthday), I can't let it go by without a deep ache in the heart, as it's the 3rd anniversary of our dear youngest sister's death. Our thoughts are with you, John.
Sunday, 18 September 2011 10:05 AM.
A roundup of last week's medical history really doesn't say much.
Then again, maybe it does. A steady, quiet environment punctuated by a couple of nice visits from friends seems to be how it works. That way I have as much stability as there is likely to be.
But it's obvious I have to stick to these rules. Last night we went out to a nice restaurant with our dear friends, the Mackenzies, to have a preliminary celebration of a certain significant birthday on Monday for a certain significant lady. I had the equivalent of a glass of red wine throughout the evening - not a long one - and some coffee, which was excellent but quite strong, at the end. I didn't have dessert, though was tempted.
I knew later in the evening I was a candidate for a seizure. My little finger on the right hand gets slightly twitchy and curls a bit. By itself that doesn't make a seizure inevitable. But I also felt the stiffening of the arm and the heaviness of the limb, which is a near certain sign I'm in for it. It came at 4.45 am and was about a 7 on my Richter scale, travelling through the body and leaving me nauseous. About 3 mins I would say, maybe a little longer, with a few minor aftershocks. Even now some 5 hrs later, the little finger is trying to tell me something I don't like. My vision is quite impaired at the moment, and speech isn't great.
I could be negative and say, a lot of hard work on the arm and leg has been undone, but then I think maybe if the work hadn't been done, the effect might have been worse. I am sure I recover quicker these days even though the seizures are as strong as they used to be.
The problem as usual is trying to second-guess contributing factors. It may have been going to happen anyway. I can't pretend there's no sign of growing tumour activity. Then there's going out - once in a month! - lively company, different food (though mine was quite bland), the amount of red wine - one glass! - the coffee, a day before where I didn't have a day-sleep.... one or some or all of these - it's impossible to say. All I know is I am going to try to keep the variables to a minimum, renew the exercise at the right time and build it again slowly, and take it very easy for the next week.
Saturday, 17 September 2011 10:20 AM.
No-sleep days do muck around with my circadian rhythm, there's no doubt about that. I was awake early after going to bed quite late, and though I feel quite good in other ways, I am tired right now and will need to sleep again very soon.
Tracey has gone for a walk. She's feeling better. It's as normal a Saturday morning as one gets. And another week has disappeared from all our lives forever.
Wednesday, 14 September 2011 4:30 PM.
I should have written something here this morning, but I got caught up with other things and then my brain said sleep, and I did. Sensible lad. Though to be truthful, I don't have much choice when it does say that.
I've showered and drunk some water, Tracey clipped my fingernails, and made us a cup of tea. Here I am. I never get used to someone else clipping my fingernails, but if I try using the left hand, the right arm and fingers aren't cooperative, and I can't clip with the right hand. Kinda like a blind man trying to describe what's happening out in the street to a deaf man. That's my left and right sides.
Yesterday was interesting in one way. I felt no urge to sleep at any time during the day. I can't tell you how long it is since that happened. I went to bed a little earlier than usual - not much - and woke at about 6.30 am, feeling good. Even balancing on the tips of my toes (well, what I call the tips - some may disagree!) was better than usual. The tai ch'i elements have improved. Getting down on the loungeroom floor and getting muscles obeying commands from somewhere in my brain yesterday always helps. But I did hit that wall again this morning, not that that's bad. It just means that occasionally I may escape a day that I must sleep while the sun shines, and that's probably in the middle of the Avastin cycle, when on average I am as good as I am going to get for that cycle.
No seizures this time round, touch wood. Nine days since the last. That was the morning after I had some red wine and lively company. It seems I am destined for the quiet life. No hitting the bars or nightclubs for me any more, or 6 am surfing on Dumaresq Dam amongst the sharks.
Tracey is definitely on the road to recovery, and it seems she's escaped the 16 week cough. Touch wood. I'm not superstitious or anything but I have to say that, and touch some real, solid timber. Call it insurance. Call it anything you like. Taureans don't believe in astrology and we don't believe in kismet.
It's OK, I touched wood when I said that.
Sunday, 11 September 2011 11.59 PM.
It's really hard to say how this week has gone. It's one where all I can do is look at the positives and negatives. Nothing is ever as clear-cut as you might imagine.
The headaches and brain-fuzz are around more or less all of the time, but they are not high level. It's more like having a fairly permanent hangover but doesn't stop me from doing anything. Memory leaks are frustrating. If I think of something I want to add here and I take my mind off it for a second, it's gone. I did, and it's gone.
In some physical respects, I am fine. No colds, no other pains, no cramps in the right leg I used to get. I seem to have been sleeping even more.
I was going to write about other things but I think I've said most of them before. The past week has simply confirmed for me that the main immediate problems are to do with balance and right arm and leg. If I stop the exercising I'm doing then the right side will seize up.
Saturday, 10 September 2011 8:10 AM.
Tracey hasn't yet made it out of bed today, but was a bit better as the day went on yesterday. I just hope the recovery continues today.
Friday, 9 September 2011 9:50 AM.
Very rainy today! I suspect it hasn't stopped since those first few spits at a quarter to one this morning. I am OK, having slept late with the overcast weather and the soothing sound of the rain on the roof.
I wish I could say the same about Tracey, but she has come down with a nasty flu. There's a type going round here that they call the '16 week cough' - when the flu symptoms disappear, one doesn't, and that's a dry, raspy cough coming from a throat that has a persistent irritation. It seems to be everywhere - but right now, Tracey is in the throes of the sneezes and snuffles and it's all very unpleasant for her. If she avoids the 'cough' end of it that will be something.
Caring is a stressful job. Stress breaks down resistance to infection, and Tracey has to go to all the places where the viruses and nasties abound. We'll do our best. Christian has developed some basic cooking skills and can do everything else that needs it. I could do some of these but basically I'm just a bit of a menace who helps most by staying out of trouble.
Thursday, 8 September 2011 8:50 AM.
Back to cloudy and overcast with rain on the way. The infusion went perfectly, so we now see how things go for the next three weeks. That's the longest block of time I can think ahead in.
In a way it's a more significant one than usual. Tracey's birthday is in the middle of it, and Alice and Sylvia will arrive on or near the day of the next trip to the hospital.
I feel lucky that my treatment is not invasive in the way some are. From the time we leave home to getting back here, maybe 100 minutes have passed. In Melbourne we would have spent more than that in travel alone.
I haven't felt any immediate uplifting as I sometimes do, but it seems to take longer and be less noticeable these days. I am pleased that the 'blister' on my stomach has decided to start to 'dry out'. If it does what the others did, it will eventually go away, but the whole process is quite long.
Herewith endeth today's epistle....
Wednesday, 7 September 2011 7:55 AM.
At 11 AM we'll be off to Oncology to have the 3-weekly Avastin infusion. In the past few days I have certainly been slowing down, like a wind-up toy with all the energy released from the spring. My mood reflects it, as each little thing becomes a harder battle.
My weight simply keeps increasing even though I am eating less. This is easy to account for with the medications, but that's not really a help. I look in despair as I catch sight of myself in the mirror and see a face blown up like a balloon and this body I don't own. I struggle hard to get out of any chair, and walk like a drunk. The strange black spot remains on my stomach like a full blood blister, neither increasing nor decreasing in size. Others have slowly disappeared, which is good. I'd like this one to.
The morning waking's vague headache and stomach pain have disappeared. I slept well enough though feel lacking in energy now.
I'll do some extra exercise before leaving to pump up the veins in the left hand so they're as good as they can be to insert the cannula. At a pinch they could use the right hand, though there's always the risk of a seizure interrupting proceedings, and the last thing we'd need would be the infusion taking place while the right arm and hand are out of control.
Let's stop doing the Marvin the Paranoid Android thing. Usually things go like clockwork. There's no reason to think they won't today. We'll see the spring cranked up, have a rest, and see what the rest of the week brings.
I realise it has taken me 40 minutes to write this.
Tuesday, 6 September 2011 8:00 AM.
Just a brief entry to say that things seem to have stabilised and all is as normal as it gets round here on the health front!
Monday, 5 September 2011 9:25 AM.
Not a great start to the week, unfortunately. Well, Sunday was fine, with the Mackenzies over for a couple of hours in the early evening. I had a little wine (one glass over the evening) and all was well until 2.15 am when I was woken by a seizure. About 6 on my RS. Maybe 3 mins and doing the complete circuit of the right side, with minor aftershocks.
It’s been a whole month since the last seizure, it’s nearly Avastin time, I believe I’m getting increasingly sensitive to alcohol (damn!), the company was lively and I did have sweets for a change. Any or all of these could have played a part. I’ve come out of it OK but with some setbacks to the right side physiotherapy. I sit it out, get plenty of sleep, play it quietly till Wednesday, and get pumped up again!
That’s the way it works.
Friday, 2 September 2011 8:58 AM.
I think my body has settled down after the dodgy experiment with staying awake all day and not giving in to 'hitting the wall' syndrome. Perhaps if I had persevered it might have developed a new routine, but to what purpose?
The experience, if it helps others with a similar condition, simply underlines for me the importance of being aware of what's happening with body and mind, and how they're relating to each other.
So it's Friday, and I'm feeling comfortable. That's about as good as it gets for me, and all I ask for right now.
Thursday, 1 September 2011 10:45 AM.
I must confess that I feel less happy today than yesterday, and it's all my own fault. Yesterday I was doing stuff, and though I got tired in the afternoon I ignored it and pressed on with what I was doing, and it simply got too late to go back to bed for a sleep. I went to bed earlier to compensate, but have woken after sleeping a full 8 hrs feeling very head-achey, brain-fogged, disorientated, vision impaired and out of sorts.
I had the thought that maybe I could establish a more regular (in terms of everyone else, i.e.,) lifestyle, but it seems that my brain doesn't take kindly to the experiment. So I will go back to doing what I have been doing for so long now, and give the tumour less chance to dig in.
At least, that's how it feels. The balance between it and the medications, sleep, physical activity, eating, exercise and psychology is so delicate that it doesn't take much to upset it.
John, our thoughts are with you as we just now receive the news of your dear Mum's death.
It's spring. Hmmm.
Comments:
acidicice said...
XoX keep on keeping on. You're doing great!
August 29, 2011 2:27 PM
Denis Wright said...
Thank you! (from across the Indian Ocean...)
August 30, 2011 5:51 PM
Anonymous said...
Denis,
I came across your page by accident about 2 months ago and have been reading it.You are one special and strong person.I had brain surgery about 11 years ago nothing like you thou.I had 2 brain aneurysms ready to burst,13 hours on the table and 2 surgeons saved my life and all i lost was my smell.After 10 years of scans have just got the all clear.Had to learn to do some basic things again and memory was crap and ended up getting depression from it and wanted do kill myself but all that is over with now and it was a struggle.You keep doing what you are doing and you are awesome.
jayne from Melbourne vic
August 31, 2011 3:25 PM
Denis Wright said...
Jayne: thanks very much for your comment. I don’t know about special and strong. I draw on strength from those around me who put up with me no matter what. Other than that, what is there but to go on and make the best of life? As indeed you would have discovered. I feel I have been fortunate. Without family and friends I would have been dead a year ago. I cannot but be grateful that I can still sit here and type this.
It is wonderful that you had such a good recovery. It is obvious to me that this was partly due to your own strength, without taking away from the extraordinary work done by surgeons and other medical staff. I never used to watch such programmes on TV as RPA, but now I see them and marvel at the skill and patience of the people involved.
Depression is a terrible thing. If you have never suffered from it then you can’t imagine it, no matter how hard you try. No-one can really understand living daily with such things unless they’ve been there.
In that regard I have been fortunate again, in that whatever I’ve been through, I have never been depressed in that ‘black dog’ way it is often referred to by sufferers. (See http://www.blackdoginstitute.org.au/public/depression/causesofdepression/index.cfm ) It may yet be my lot to become so, but so far not. You have weathered that storm and I congratulate you. I know the reason I haven’t is largely the love and care I receive every minute of the day and night, in this house.
Thanks once again. I wish you continuing good health. In life, to all complainers about First World Problems, health is all you really need.
September 1, 2011 11:56 AM
Tuesday, 30 August 2011 10:10 AM.
Feeling quite chipper this morning. (That means 'good'!) Spring is in the air. I think the increased dosage of anti-nausea med aimed at stopping my stomach from falling to pieces is doing its bit to relieve the gnawing discomfort there. I'm hoping so, anyway.
I promise to do the exercise I skipped this morning later in the day. Really. I do! Nothing else to report.
Sunday, 28 August 2011 3:21 PM.
I thought it might be an idea, on the last Sunday of August, to review the month today rather than just the week. Looking through the diary, it’s simply a matter of condensing and concatenating some details.
There’s been only one seizure in August, unless I had a minor one in my sleep a few nights ago. The one early in the month was only mid-strength.
Headaches and foggy head syndrome are slowly increasing, but so far not at a dramatic rate. They are inconvenient but not too serious. Sometimes there is pain at points near where the tumour is located, and at others at spots I don’t expect. These pains don’t persist for long periods, but do return.
Negative effects of Avastin are also on the increase. I suspect that the process is one which on a graph would see a slow starting rate in the early months, but ever-increasing as it goes, given that we are approaching a year on Avastin.
There are no statistics on this but I suspect the medical assumption is that tumour growth for most patients would have made longer-term side-effects irrelevant. We continue to keep it at bay for the most part, but each month sees it gain a little more ground. It is possible that this could suddenly accelerate, as if the tumour had found an immunity. Who knows?
Short-term memory loss is increasing, which can be very frustrating. I often have to adjust what I’m writing to get round a word that won’t come to mind. At this stage you probably don’t notice, but I do!
The foot-swelling seems to have slowed but there is little doubt that a mass remains and a clot could move. If one does travel to the heart or brain then everything will get serious very quickly. We’ve lived with that possibility for a long time now.
Skin irregularities are on the increase but so far are restricted to arms and stomach. I have no strategy for dealing with this except to take care not to bruise the skin – but they don’t necessarily appear only where that may have happened. The new type seems random and not caused by bumps to the skin.
Balance and ‘heaviness’ and right side weakness are on the increase though through effort I can use the right hand better than some months ago. Fatigue has increased although I am sleeping reasonably well. Now I understand better the notion of Chronic Fatigue Syndrome – something Tracey had but one needs to experience something similar to appreciate how debilitating it is.
Over all I remain relatively comfortable and alert. I have no other infections or medical issues. And now I have to sleep!
Saturday, 27 August 2011 9:35 AM.
A change in the weather again to overcast and rainy after a couple of perfect early spring days. But it's warmer and may turn out sunny in the end.
I am feeling quite OK this morning after the disturbed night the night before. All systems go. No complaints. Now I will do some of the many things on my increasingly lengthening ToDo list!
Friday, 26 August 2011 1:20 PM.
I can’t say it was a great night last night. I went to bed quite happily, a little early, and was just about off to sleep when I felt this crawling sensation on my right leg. Fearing a white-tail, I got up again, and to cut a long story short, eventually stripped off my pants and turned them inside out for a full inspection. (I have to remind you that doing this virtually one-handed is no mean feat – heck, even getting them off and on again is a challenge).
I found no evidence of six or eight legged beasties anywhere.
Drifting off again, the sensation returned. I couldn’t believe it! But neither could I ignore it. I went through a similar process, checking my leg and replacing the PJ bottoms. There was no way there were any white-tails there. I checked the bed as well of course, but it was clear. Again, fooling around with blankets with one-and-a-half hands at 2 am is no picnic either. Tracey was asleep and there was no way I wanted to awaken here, as she hasn’t been sleeping well either.
I was of course thoroughly awake by then, and it took ages to drift off. Again, on the point of sleep, the sensation returned. Knowing that it couldn’t be a spider or other bug, I decided (rightly) that it was a nerve quivering in the right leg, but the sensation was identical to the struggling of a small, moving critter. Satisfied that now I at least knew what it wasn’t, I ignored it and settled down again.
That was when the cat from over the back started moaning. There’s nothing wrong with it – we’ve seen and heard it do this before, but it’s just like as if it’s being tortured by slow stragulation. Not loud, but plaintive as if in terrible distress. It’s not, trust me. It just makes these weird sounds, this time at 3 am and for ages. I was hoping a neighbour would do something about it. I can’t.
Finally I got to sleep and woke with a strange sensation in the right hand fingers. They were curled up, as if I were having a seizure, yet some of the characteristics of a seizure were missing. Yet my whole right side felt crushed and near-paralysed.
Maybe I had a seizure in my sleep! It’s not impossible when I was as exhausted as that, I suppose. But who knows? All I do know is that I’m going to have a sleep very soon to see if I can get back on to a more even keel.
Thursday, 25 August 2011 10:15 AM.
Maybe just go here....
Wednesday, 24 August 2011 8:10 AM.
Half the week has gone already. I had to check when it was we went to the doctor’s. Now I find that it was last Monday. I thought I had reported here that following the visit, we upped one of the medications to help control the savage longer-term effect of Avastin and the steroid I can’t avoid. These two attack the stomach lining over time, so there’s a real danger they can bore holes in my gut. I have been experiencing some daily pain, mainly when I wake after my twice-daily rest periods, but it quickly subsides. At the moment it does, at least, but can come back through the day or evening.
Welcome, me, to the world of the peptic ulcer. Increasing the medications to control stomach acid should help.
A new phenomenon I referred to briefly elsewhere is the sudden appearance of black spots on my skin. Showering last night, I found one had appeared on my left arm, quite a large one. In the past, all of the skin blemishes, if that’s the right word for them, have been confined to my right side, but now it seems they can appear anywhere. Like ‘Black Spot’ on the leaves and fruit of stone fruit really. Or roses. Maybe I should spray myself with white oil - or what's that dusting powder? I've forgotten. Derris Dust? That came to me out of the blue.... (NOOO! That's to deal with parasites. Spare me those!)
I don’t know how that will pan out. There’s no reason, I guess, why I shouldn’t wake one morning and find one of these large black spots on my pretty face. Que sera.
Apart from that, I can’t complain. I was able to eat satisfactorily last night with a fork AND knife, cutting up what was on my plate. I put that down to some consistent self-physiotherapy I've been doing on the right arm. I look like a kid who hasn’t been taught table manners but I can get food up to my mouth, so don’t knock it.
I am sleeping well enough and am not in any pain worth talking about. And that’s enough for now.
Sunday, 21 August, 2011
Let’s start with a fresh page to review the week. There have been no seizures. Going through Past Daily Updates, I see that the last one was 6 August – over two weeks ago.
I know I am tempting fate by mentioning it. For several months now, we haven’t escaped a 3-week cycle without at least one.
As an analogy, a seizure is more like a volcanic eruption than I first thought. Things keep happening deeper below the surface than what an eruption demonstrates. Like Mt Fuji, which last erupted in 1707, it sends out occasional warnings that there’s fire down below.
Seizures are like that. They are warnings that activity continues to build. They are often big enough to pour lava down the side and wreck whatever’s in the pathway, like parts of the motor centre in there.
But mostly there is little indication they are on their way, not even a wisp of smoke.
Much as we’d like it to, it doesn’t mean things aren’t happening deep down. The seismograph of sharp twinge pains that come and go in particular spots, especially where the tumour was operated on, the general fuzziness that descends on my brain, the failure of the ankle to lose its swelling in spite of hundreds of injections, the ceaseless ringing in the ears, the balance issues and increasing tremors throughout the body, the lengthening periods of sleep.... they create a substrate record that even the seizures don’t reveal.
OH - and the frustrating memory lapses. I forgot about them! How sadly perfect....
I state these things simply as facts. I’m not interested in extracting sympathy from anyone. I know how much people care and am grateful for it. There are things we joke about or discuss candidly that you wouldn’t believe.
But I made a pact with myself when I began this blog, and that was to report as clinically as possible what I feel is happening to me, as it happens, for as long as I can.
And that may be quite a while yet. Meanwhile, I don’t suffer from depression, I enjoy the company of my beloved, my family and friends, armchair sport, news, writing nonsense, good foods, an occasional glass of wine, my comfortable lounge chair, and the spring blossoms now blooming outside. This time last year there didn't seem a ghost of a chance that could happen.
Saturday, 20 August 2011 11:20 AM.
I got started on about 20 things this morning, and haven't finished any of them! I should have begun the day by saying that I am feeling perkier this morning and will try to get at least a couple of those partly-completed things done. Hoping all who have weekends have a good one. Apologies to my long-suffering sisters whose emails I haven't responded to. It's simply disgraceful time management.
Friday, 19 August 2011 10:35 AM.
I'm feeling a bit out of sorts this morning. Weary, a bit unsettled.... I don't know. I can't quite put my finger on why, but I do have some theories. Let's see how things go as the day progresses. I did manage a story, though....
Thursday, 18 August 2011 7:23 AM.
I’m feeling more energised since yesterday’s Avastin infusion. For some time in the next 3-week cycle the positives will probably dominate until the balance goes the other way, depending on if and when seizures occur.
There’s nothing else to report. I have things to do, so better get started!
Tuesday, 16 August 2011 9:00 AM.
I'm earlier today, for a change, which is ironic as I have nothing of great consequence to report. I will make one observation about the weather, and that is that I've never seen a winter before that had so many grey mornings. I guess over the entire east of the country the whole year has been relatively moist, so the air is higher in water vapour. Anyway....
We'll see how the next 24 hours go and skip off to the nursies to be hooked up to the black bag. It's strange to feel cool liquid being injected into a vein and know how far up your arm it's got by the chill. I'm not pleased to see the occasional black spot suddenly appear, say, on my stomach, like a fleck of dirt, and find it full of blood. Totally painless, like a blood blister. I suppose these things are what you must expect when your body chemistry is interfered with as much as mine has.
It never ceases to amaze me what insults the human body can put up with. We're a lot tougher in some ways than we can ever imagine.
Monday, 15 August 2011 10:22 AM.
A day late yet again in clearing the WHAT'S NEW! page for the week. The Past Daily Updates page has become an important diary for me. It is amazing what I forget until I go there, or to find out when a particular event occurred. Sometimes I’m wildly out in my estimation of time, or an incident is completely forgotten until the WHAT'S NEW! page brings it back.
Reviewing the week, there are pluses. I don’t think there’s been a seizure, yet I’m due for the next Avastin hit the day after tomorrow. We’ve led a placid existence. The experience once again has been the feeling of an inexorable running down of the battery as it comes closer to the recharge day, but that part of it hasn’t changed much. I feel no worse at this stage of the 3-week cycle than I have for months.
Yet I know things do change. Memory loss, dullness, heaviness, balance, physical strength – for all the exercise, I am amazed when I try to pick up something with the right hand and find that the strength is so feeble. The arm’s strong enough, but the messages don’t get though properly. It can’t do what it’s told. Lying down, I circle with the left ankle, leg or arm. The circle’s perfect. But with the right, it’s like there are eight notches in the wheel and it cranks from one to the next, in a stop-start movement that looks quite funny, even if pathetic.
I am not a person who flies into rages. Yet yesterday when I was trying to connect a mouse to the laptop, on the right side, it was impossible. I think I tried for 10-15 mins, determined to do this simple thing. It was utterly infuriating that I couldn’t manage it, and finally Tracey had to come and do it.
Such a simple thing, yet it was beyond me. I, who spent hours tinkering with connections of all sorts in the past, was sitting there, stress levels at a zillion, probably red-faced and certainly furious, while Tracey patiently extracted me from it. The ‘road rage’ syndrome, as Tracey mentioned in what she wrote.
I was never one for that, but I understand it better. It’s a little example of looking beyond the weekly bulletin and realising that the evidence for things changing over the longer term is growing.
Friday, 12 August 2011 5:25 PM.
I may as well continue with medical status updates at unusual times this cycle, though there are no major changes. Here we are back to the weekend yet again and I didn't feel we quite got the week off to a real start!
My right foot which has been slightly swollen for many weeks now was looking very normal when I got up this morning, but I see that through the day it has swollen a bit, so we can't expect miracles there. But I do like to see it normal even for a little while. Yet while the swelling persists, the danger of a clot travelling to places it shouldn't remains a nagging concern.
Now that we have resumed full strength Clexane injections for two weeks, it may stabilise more satisfactorily. Who can tell?
No more seizures. So far. I have the feeling I'm not going to escape till Wednesday without one, but we'll see. Here's hoping.
Of more concern are the flutters or minor tremors I now experience from time to time in my left leg, usually when I'm sitting quietly or lying in bed. Everyone, I am sure, has felt something like this - a 'nerve-jumping' episode that may go on for some time and then it goes away. Sometimes it happens in the hand and arm as well, though not for long. Right now there's no sign of it.
Normally we'd dismiss such things as muscular and temporary. But in my case, it's not so easy to do that. If it is a sign of developing tumour activity on the right side of my brain as well, then I guess I don't have to spell out the significance of this.
BUT.... let's not jump the gun. My diagnoses or hunches have been wildly inaccurate before, and there are times I am rather glad I've been wrong. Right now I'm relaxed and comfortable, and looking forward to the evening.
Thursday, 11 August 2011 7:05 PM.
I always feel best after my daytime sleep, which is the timezone I am in now, not long after waking. Please read on....
Wednesday, 10 August 2011 9:13 AM.
I woke after 8 and didn't feel energetic enough to move for a half-hour, so I didn't. Nor have I done the daily exercises. My plan is to do these before I sleep next.
The weekend was barely over and now it's Wednesday, and in a flash the next weekend will come. The seizures haven't returned, though I am wary of saying that, because the last time I did, I had another within a day! It's exactly a week till the next Avastin infusion.
I will write some more and read. There's nothing to add that would be more than repetition.
I look forward to the warmer weather.
Monday, 8 August 2011 10:37 AM.
Let's start off the week afresh. Basically, no news is good news. I slept well and am quite good, apart from a persistent feeling of great heaviness. No-one in the house has any major health concerns. Friends who have flu and were intending to visit thoughtfully delayed coming until they're clear of it. We thank them for their consideration. With luck the winter bugs will disappear with the warmer weather on its way after the rain we've had.
Sunday, 7 August 2011 10:10 AM.
Except for a very patchy night's sleep, there are no dramas today. No more seizures. All parts of the system as stable as they can be.
I usually do a roundup of the week on Sundays, but for the moment I'll just report the last 24 hours and update more thoroughly later. That's it for now!
Saturday, 6 August 2011 9:05 AM.
I must have slept till 8am and did my usual exercises, pushing things a little harder this time. Then I went out to have a light breakfast and take my tablets. Usually I have taken them at least an hour earlier. Preparing my Green Monkey green tea, I felt the all-too-familiar sensation of the onset of a seizure. My fingers were twitching and there was slight pulsing in the right arm.
I lay down again and waited till the seizure passed. It wasn't a long one, and nor was it especially strong - about 3.5 on my personal Richter Scale I would say. (Jan, who calculates from Glenn's daily experiences in Tokyo the effects of earthquakes on their daily lives will know exactly what I mean by that.)
What surprised me was the strength of the effect. Minor though the seizure was, the paralysis for the right side was strong. On my personal Richter Scale that bumps it up to about 5.5! That's a cause for concern. On the plus side, I was able to recover about 80% of my strength after 10 minutes. I still feel shaky but this too shall pass.
I remain bamboozled about the relationship between exercising and seizures. So many times they have come soon after exercise, yet so many have come out of nowhere. In physiotherapy, I exercised very hard, yet there was no seizure afterwards on any occasion and no sign of one. The jury for me is out on that one. The majority view is that there's no correlation, but something tells me there is. There's one lone juror holding out for a conviction. Maybe it's just the depth of memory from that first seizure.
On we go. We can still do that. It's not the start to a Saturday one would wish, but let's be grateful for the mercies available.
Friday, 5 August 2011 7:35 AM.
The feeling that spring is on its way is cheering, as another late-winter Armidale day dawns. It offsets to some extent the lethargy, lassitude, torpor – whatever you want to call it – that comes with this stage of coping with the effects of the tumour and the medications that try to control it. I have had no seizures in this cycle so far (yes, I found some bare pine wood to touch while typing that!) but there are signs that in other ways I am close to being back in the pre-Avastin days of exactly a year ago.
I am refusing to accept that I just sit back and lose whatever control I have over motor functions, for they are the most affected. As the weather warms, I want to be out more, in the sun, to supplement whatever indoor exercise I take. It is hard to expose skin to sunlight in very cold weather, as I want to do, and the winter up till now has been comparatively grey. Vitamin D supplements are not a complete substitute for sunshine and fresh air.
On that level we will fight back as much as possible, as the physical and the psychological are so closely related.
Another week has flown by. It seems barely possible.
Wednesday, 3 August 2011 8:34 AM.
Another typical winter morning in Armidale, and 19 degrees is tipped for the max! For us, that’s saying spring is on its way, and it’s very welcome.
It’s a mixed bag on the health front. On the positive side, I don’t have any headaches and once I am sitting down then things are pretty normal for my current state. I am sleeping well, most of the time.
On the other side, there are definitely things to be watched. The right ankle seems not to want to change its puffy state, though it’s not bad. Sometimes I get pains in particular parts of the leg, and there are more lesions on the right arm. They just appear. Balance, or lack of it, is becoming a more serious issue. Short-term memory is not good. These are signs of increasing tumour activity.
I’ll write in more detail about what I see as the likely prognosis at a little later stage. For now, as long as I can sit comfortably and exercise as much as possible, it’s business as usual.(Looking at this, it's not much different from what I said in the last July entry, which illustrates all too well what I was saying about memory!)
Tuesday, 2 August 2011 9:00 AM.
I can't say there's a lot to report. Our household goes about its business quietly and the world goes on. There are things I will write about, but as there's nothing major to talk about healthwise then I'll spend the time doing something I think is more productive!
Sunday, 31 July 2011 9:35 AM.
The last day of July 2011. The pace of life is disconcerting. But we have life, and that's what matters. Still, it has to be a fair quality of life, otherwise there’s not much point to it.
Time for a think about the past week. All in all, it’s been quite good. The Avastin has no doubt totally infused my system and is doing its job keeping Brian at bay. (Brian, for the uninitiated, is my brain tumour.) He’s there as a constant shadow, taunting me with seizures when I least expect them, but in the past week there have been none, even though there have been signs.
I confess to feeling more tired, but that’s because I know I’ve been overdoing it mentally, and some pure vegging out is required. Yet there are so many things I want to write about.
On the negative side, the lesions, if that’s the right word for things that look like blood blisters, keep coming to the right arm. They are not painful but remind me of the effects of alien chemicals that have flooded my system in the past 20 months. I find it curious that they should affect only the right arm – the one that took the brunt of the tumour activity and still does. I don’t get how that works. Why just that arm?
My body continues to feel very heavy and out of kilter. It’s only a matter of time before I really lose balance somewhere and come down. I just hope it’s a comparatively soft landing, as I can’t really afford the other sort.
That aside, I don’t have immediate cause for complaint. I’d like to take a longer, clinical look at what the future may hold, with the experience of the past 20 months behind me. But not right now.
Wednesday, 27 July 2011 6:39 PM.
My Avastin infusion until 17 August is over. Colleen, the nurse, found a good vein and the procedure went off like clockwork. I've slept for a lot of the day since, and only when darkness fell did I emerge like a troglodyte from my cave.
That's the way it is these days. But with the weather improving at the moment, and the days lengthening, I do hope that we walk more in the sunshine and break from living like a trog. (Yes, I AM taking Vitamin D tablets!) Here's hoping the seizures stay away.
Sunday, 24 July 2011
Sunday roundup of the week's medical history. It's been a bit topsy-turvy, but seems to have settled after the last seizure activity. I'm at the stage now of the 3 week cycle when I suddenly feel 20 kg heavier (praying that isn't actually the case!) and balance is something I have to be careful about, especially after sitting for long periods.
The foot swelling seems to have subsided, which I am happy about. This is probably due to returning to full strength Clexane injections. Headaches have been minor though I am not keen on some that have been stabbing ones in specific areas, and then pass fairly quickly with no need for medication. I also have a tendency to bleed more easily from pressure of the skin surface or from the nose or even from teeth cleaning. This I think creates more variables which can change everything rapidly when we think of brain function and what instability in blood circulation can cause.
I have a new Avastin infusion on Wednesday. They come round absurdly quickly. It feels like they are two weeks apart, not three!
Saturday, 23 July 2011 10:07 AM.
All's OK. No seizures in the past 24 hours. I should probably have posted this before, but the moment I open a window to the internet, I know I will lose hours seduced away to other things before I do what I had planned. I've been writing, and now that the piece is submitted, I can play before I get tired.
Thanks for messages from those who've written. The knock-down doll is in upright position!
Friday, 22 July 2011 8:20 AM.
You may as well just go here, I guess.... The news isn't great, but could be much worse.
Wednesday, 20 July 2011 12:20 PM.
Very late coming here today, as I couldn't resist the Murdoch saga unfolding before me in the early hours of this morning. That was an event of the decade so even though it's knocked me out a bit, I'm glad to have witnessed it, including the attempted pie-throwing incident.
Yes, I know a 3 AM bedtime isn't smart, but what's life without drama? I'll try catching up with emails etc when I have some more rest. For the record, I don't feel too bad.
Sunday, 17 July 2011 11:15 AM.
It's overcast and warmer than the last few days, and this suits me better. Medically, it's been up and down. The very cold weather slowed my circulation a lot and I think that didn't help. My ankles seem to be pretty much back to normal after having been swollen for a week.
Perhaps I should have said 'down and up' as I think I am in the best part of the cycle about half way through. If it follows the pattern last time then it may persist until a sudden slump towards the end.
The main factors in getting seizures seem to be change, overdoing things mentally/lack of sleep, and stress. I seem to be increasingly more sensitive to them.
Change, to me, can mean something different from what you might imagine. I mean very slight changes in all sorts of ways. Very delicate little flower, it seems I am....
Friday, 15 July 2011 7:45 AM.
Peace reigneth over our household as things seem to have settled medically, for the moment at least. This offers the chance to deal with the vicious cycle of seizure producing stress, and stress in turn creating the conditions in which seizures seem to flourish.
Seizures result in lack of control over circumstances. Calm, order, routine and quietness tend to restore control.
Thursday, 14 July 2011 6:35 AM.
I'm feeling more relaxed today and less like there are seizures hovering. We're all hoping that Brian's malignant influence has been quelled for the moment at least. I have had swelling of the ankles over the past week - not a great deal and mainly the right one, but enough for a warning that fiddling with the Clexane regime over past weeks may have been negative.
We've gone back to the full strength Clexane injections, and the stomach will just have to cope with the onslaught. That's better than having a clot start to travel round my system.
So, all is OK and we go on. Oo bla di, oo bla da.
Oh, come hell or high water, I am going to finish the bottom-pinching story this morning. I haven't felt like doing that since we learned that the daughter of dear friends suddenly developed a very serious medical condition, but it seems that may be resolved favourably over time. I haven't felt much like laughing since we heard how that began.
It puts into perspective the relative unimportance of the condition of an ageing man when compared with that of the young woman in her early twenties.
Wednesday, 13 July 2011 9:55 AM.
Yet another seizure before I went to bed last night convinced me that horizontal was the best way for me to be, i.e., sleeping. I woke early but feeling rested, and apart from one warning 'lock-up' of the arm (the best way to describe how the pre-seizure sensation is) it seems to have stopped. I used some methods that sometimes work if I get enough warning, and it's settled down, for the moment. I don't think it's the last of it for the day, though.
Tuesday, 12 July 2011 8:40 PM.
Another seizure early this evening. A 5.5 on my scale but not the best of events to happen. I am now taking it easy. I admit that I may have overdone things this morning. Other than that I am OK.
Tuesday, 12 July 2011 9:50 AM.
I'm getting there. I had some things to say yesterday that have been superseded by a seizure at 4.45 AM in Minus 4 degrees C temperature. My very own internal earthquake at about 6.5 on my Richter Scale. All those swearwords that I don't say according to my story yesterday I surely was up for when I was shaken awake. I'll talk about health matters later. You have been warned.
More later. I have a couple of things I need to do and I will go back to sleep before long.
It's Lyn's birthday! Happy birthday, Lyn. Clickety-clicks. Wow!
Monday, 11 July 2011 9:35 AM.
Oh well, it seems that wasn't supposed to be posted to the world. I had written quite a lot, and this was being saved back online through the blogging program, but something went wrong. Opening it again I find last Friday's entry and not the current one.
That was supposed to be failsafe. Thanks, Blogger program. Bugger!
Back to the drawing board. This time, I'll revert to my usual practice and write anything longer than a sentence or two to a Word doc.
In the meantime, please have a chuckle at this! If you've ever had your bottom pinched, you'll enjoy it, I suspect.
Sunday evening
No sinister reason for my not getting to blogging so far today. I'll be back to it with things in order by tomorrow.
Friday, 8 July 2011 11:45 AM.
I woke this morning early with ideas floating around ceaselessly in my tiny mind - good writing ideas, I mean - so persistent I had to get up and write them down as I know that with my black-hole memory they would all dissolve in the daylight. The result is a 1000 word draft article for the ABC and 1000 words or more on my 'scars' but I must tidy the latter up before I post it. So this is all I have to say before I go back to bed, brain fuzzy, and will sleep for some time. All well!
Thursday, 7 July 2011 8:05 AM.
It's already past 8 and I feel as if I haven't done a thing yet, even though I've been on the computer half an hour. Little bits of jobs, some email answering some I should answer and haven't. Anyway....
The Avastin infusion yesterday went well. As I told a medical friend,
I've had a few twitches of the right hand this morning that often suggest I am a candidate for a seizure, but so far so good. I am a bit tetchy about it because it was the day after treatment last cycle that I got two seizures in a row. At least there haven't been more since, so I'm hoping this is a false alarm. (Later - that twitching seems to have subsided, but heading off to sleep anyway... 12:09 PM.
Other than that, all systems go! I'll get on to writing Part 3 of my Scars saga. Part 2, where I have a disagreement with a steam engine and having my life saved by Jan, is here.
Tuesday, 5 July 2011 12:55 AM.
I let the day pass yesterday without acknowledging publicly the first anniversary of our wedding, 4 July. How amazing it has been to be here still, with all the turbulence of medical ups and downs in that time. In some way, I feel better now than I did then. I have to say that this would not have been possible without Avastin, and of course, without Tracey's dedicated care.
Wednesday is the day to start a new 3-week cycle. I feel I have been lucky so far in the past three weeks, with no seizures apart from those right at the beginning of the last 3 week period. I hope to get by till then with no more. The only adverse symptoms I have at the moment is a sudden increase in weakness and tiredness just in the last day or so. My memory for day to day things is like a sieve.
Things I had the strength to pick up with the right hand I am struggling with. Balance issues remain. But I do expect this to be alleviated after Wednesday. I am not happy about my weight but seem to be able to do little to stop its steady climb. The scales on Wednesday will tell the story. Last time my blood pressure was higher than I expected, so it will be interesting to see how that goes. Tinnitus remains but I think that is linked to higher blood pressure.
Bed now and I'll write more tomorrow.
The weather is turning windy, wet and unpleasant, and doesn't look like improving for the remainder of the time the girls are here. We'll see!
Sunday, 3 July 2011 1:50 PM.
Resting now. All OK. Wonderful to have my two little girls with us for a week!
Friday, 1 July 2011
Look at that date. I've made it through half the year 2011.
That's pretty amazing, because this time last year you wouldn't have wanted to make a bet on it.
Here's a pic of me, a year apart. The first one shows me with arm disabled, in a sling, and right leg not much use. And that was my 'good hair' side!
The second shows me with hair, fat cheeks, and though you can't see it, more use with the right arm.
So, we live to fight another day, my friends. 'One more day,' as the song from Les Miserables goes.... And tomorrow is another day.
Wednesday, 29 June 2011 6:15 PM.
All is fine here. Apart from balance issues, which seem to be increasing, I really couldn't feel all that much better under the circumstances. It's a week till the next Avastin hit and it was only on those days just after the last treatment a fortnight ago that there was any evidence of seizure activity in this cycle. Let's all touch wood on that!
The funeral of my Aunt is over as I write this. For my family I will post a copy on the blog.
We are very happy that Alice and Sylvia will be up here all the way from Melbourne on Saturday.
Tuesday, 28 June 2011 9:20 AM.
I am fine once again, but sad today to learn of the death of my mother's sister, our Aunty Mavis. She was a big influence on my life for reasons that I have explained in a short personal eulogy to be read at her funeral.
Monday, 27 June 2011 9:35 AM.
The good part of the cycle continues. Let's not jinx it! :)
Sunday, 26 June 2011 11:25 AM.
I woke up at 9 AM today, feeling very good and refreshed. It will be great if this keeps up. Tracey and Christian have gone for a vigorous walk in the bright sunshine. I really like that they can do this in a place as pretty as Armidale. Later today, all going well, Tracey and I will go on a much slower one!
I hope everyone is able to do just what they please, today at least. It's nice to start the week on a positive note.
Saturday, 25 June 2011 9.20 AM
For the moment, best simply to read this.
Friday, 24 June 2011 9:13 AM. 9:20 AM.
All appears to be going along as usual. At the GP's surgery yesterday, we passed on information from the oncologist and we completed an Advance Care Directive, which I discussed in my posting today.
This is what we had been planning to do and there's nothing hidden between the lines. It's normal and sensible. I've said many times that if circumstances change, I'll keep you informed here, and I've done that and will continue to do so. I just don't want anyone to think that things have taken some dramatic change.
Thursday, 23 June 2011 9:50 AM.
So far so good for the morning. Later today, we go to visit my GP.
Wednesday, 22 June 2011 8:10 AM.
One week after the Avastin infusion, things seem to have settled down into a more normal pattern after the unexpectedly jarring first day or two. I slept peacefully and woke sometime after 7 AM to a cold, sunny Armidale winter morning. Now I would like to write one of the three tales from my past that have been going round in my head. I don't know which of these till I begin - that's the odd bit.
Half the year has all but passed. I was just getting used to 2011....
Monday, 20 June 2011 3:30 PM.
We've just returned from the Oncologist's surgery. My oncologist, Dr Nick Pavlakis, has a formidable reputation in his field. One of the most heartwarming stories about his involvement in brain tumour research and treatment comes from 2003, but it timeless. I'm very lucky to have my treatment supervised by him. He visits Armidale from Sydney regularly and takes on patients like me, even though the demands on his time and patience are relentless.
We had a good discussion based on a report I prepared for him, but I will leave that to a blog entry (still to be written), as this isn't the place for it. This is just to let you know that things are going along as normally as they can under the circumstances, with no dramas and no major events - happily, no seizures!
Happy birthday, Alice!
Sunday, 19 June 2011 8:45 AM.
A week of ups and downs, it's been, but finished better than it started. No seizures again last night, but it was a close call as I woke with flickering tremors and that 'clamped' sensation in the right arm which threatened to turn into a full-scale seizure. Finally in this limbo land, I decided a radical approach. I clasped both hands together above my head, and began to work the muscles on the right side, and then went on with the routine I described yesterday.
Either a seizure wasn't going to develop in any case, or the activity interfered the seizure mechanism, because it settled down, but I may not be out of the seizures wood for today yet. I am still feeling like I weigh a hundred tons or so.
Tomorrow we visit the oncologist and I will report to him developments since we last saw him. It has been almost three months since we last visited. There won't be earth-shattering revelations that emerge from this visit, I expect.
I have some interesting comments to respond to as the result of discussions emerging from other postings, but they'll have to wait for a little while - but just let me acknowledge them here and thank those who've participated so far.
Saturday, 18 June 2011 10:15 AM.
No seizures last night, though I must admit to going to bed apprehensive about it for the first time. I resumed 'normalcy' as much as possible this morning with routine and exercise but intend to lie low for most of the day. Forgive any failures to respond to emails, and other places where I might usually be found online!
Friday, 17 June 2011 9:15 AM.
The execrable Brian demonstrates yet again how quickly things can be turned around. I understand how the people of Christchurch must feel. At 4.45 AM today I was jolted awake rudely by a strong and persistent personal earthquake in my body.
Although the new infusion of Avastin was just the day before yesterday, I had the the most powerful seizure I've experienced since taking the drug. It took hold of my right side bit by bit, but not letting go of any portion it had taken control of. Sometimes it is selective, but not this time, and each part of my right side had to yield.
After about 3 minutes it stopped, though this time with threatening aftershocks over the next few hours.
Yes, it is dispiriting, especially after an entry like yesterday's, but I won't dwell on that as there's nothing medical to be done. The only approach is psychological, though to be woken from deep sleep by a seizure doesn't give you much time to get the brain into 'combat' mode, if that's the right term to use. (It's not, really.)
What it does mean is that this 3 week cycle is going to be fairly critical in helping anticipate what's ahead. I won't do the 'what ifs' here as there's no point.
As usual, we'll proceed day to day and I will write the last tiny part of my encounter with Kahoutek, begun here.
Thursday, 16 June 2011 10:00 AM.
I feel more invigorated today after the treatment yesterday. I really don't know how much of this is psychological but I do recall that at the beginning of the last cycle it seemed to take some days before I felt any benefit. In the end, it doesn't matter really which it is, but I have been able to do some things this morning that I wanted to do, as well as exercising. I hope the feeling lasts a while!
Wednesday, 15 June 2011 12:45 PM.
The Avastin infusion went very well. Time for me now to rest and let it do its work....
Monday, 13 June 2011 1:10 AM.
So fast does time now fly that I didn't even do a Sunday posting. My waking hours don't seem long enough to share with family and friends.
I realise that I didn't mention last week that the blood tests showed the Dilantin levels have remained stable for many months. Dilantin is one of the two anti-seizure drugs. That is good news. There is actually no way of measuring the other one (Keppra) so it has been trial and error, but we are fairly certain it is at the right level as it has been unchanged in dosage for months.
I have had headaches after waking today, which I think is the tumour making the most of the days before the Avastin infusion on Wednesday to rally. I am unsteady on my feet though I get around well enough so that I can do most things. My body feels very, very heavy. This is I think results from the fact that signals from the motor centre are being impeded, but the effect is the same. But as long as it remains confined to this part of the motor centre things are manageable.
I am experiencing some slight difficulty speaking clearly, I have tinnitus most of the time, and hearing and sight clarity come and go. Loss of short term memory is an ongoing problem.
It will be interesting to see if there is an improvement in some of these by the end of the week, as a result of the Avastin treatment midweek.
To finish what looks like a litany of complaints (which it's not, just a statement of fact) on a positive note, I have had no more seizures since the two last week, and hope to get through till Wednesday without more.
Otherwise, you know, I'm pretty damn good!
Saturday, 11 June 2011 10:35 AM.
Nothing to report so far. No news is good news!
Friday, 10 June 2011 8:35 AM.
I'm using a slightly different strategy this morning, writing here before finishing the Jiayuguan incident. I woke about 7.30 AM, exercised enough to satisfy me that it was enough for now, had some cereal to protect my stomach from the negative effects of the morning's medications, and here I am. I feel good so far, even though another Avastin infusion is only a few days away.
Given how up and down it's been this time round, the next few days will be interesting. I could sail through with minimal problems, or the ton of bricks syndrome may hit at any time. Toss a coin. I'll do what I can, and Tracey will, to try to see it lands right way up.
Thursday, 9 June 2011 8:35 AM.
Brrr! They said it was going to be -6 degrees, but it was only -5, so that's a heap better! I'll write this before my one good hand freezes up, as the study's not too warm even though it's after 8 am. I slept well; no seizures, though all day yesterday they were threatening.
That's a win as far as I'm concerned. Today I feel physically more stable, for the moment at least. But I have yet to finish my Jiayuguan story. I intend to do that through the morning, if something doesn't sidetrack me, which is always on the cards.
Later today we'll go and do a blood test so the Dilantin levels can be checked. It's been many months since we bothered. We have to know, with these seizures hanging about, whether the level is off the scale at one end or the other. The effect is exponential, by which I mean that the levels change dramatically the greater the distance from my safe zone. Think upside-down Bell curve.
We've abandoned Clexane injections. After 9 months of them daily, with little evidence of clots, it's time for a rest from them. The GP approves of this. Should I get any ankle-swelling or unaccountable leg pain, we'll get an ultrasound done and see if there's anything visible. At least my stomach can recover from looking like a punching bag, and the interminable allergic itchy reaction to the injection.
If this is my greatest complaint, then I'm not in such a bad way.
Now, back to writing. I will not yet open email, or look at FaceBook, or Twitter. I so easily get led astray!
Wednesday, 8 June 2011 10:10 AM.
Late this morning coming to this spot, as I was writing the first part of our amazing timewarp in the Chinese desert city of Jiayuguan. I think you'll like it.
I slept OK. I've picked myself up and dusted off after my encounter with the second seizure for the week yesterday morning. That's all I can do on this chilly morning here in Armidale. In sheer defiance I did exercises which don't seem to have had any effects other than positive, but I need to rest now.
Tuesday, 7 June 2011 8:50 AM.
We are off to the GP for a 9.30 appointment so this will be brief. It's been another disturbed night. I was awakened at 4 AM by another seizure; on my Richter scale, about 6. It lasted a good two minutes and was fairly strong. The good news is that it was mostly in the upper body and not too much from the waist down, but I am fairly unsteady on my feet. That shakiness has been a gradual process, not an overnight one.
The worst thing about night seizures, especially in winter, is that there's not much else to do but remain in bed, as there's always a period of recovery required. Lying awake I'm aware of aftershocks, small ones through the rest of my body. In the daytime, when doing other things, I don't notice them as much. One fairly recent seizure was accompanied by a lot of them over a 4 hr period. It wasn't that bad this time, but it is unsettling to lie there and have them happen, not knowing if they'll develop into a new seizure. That's happened before.
To look for positives, this isn't the first time things have happened in this way in the seizures of the past few months, so it may not get any worse during the period to the next Avastin infusion (15 June). We'll get a referral today to have a blood test for Dilantin levels, as they haven't been checked for quite a few months. They may be going gradually towards one end of the scale or the other by this time, and that may need fine tuning. If they are within my normal safe range, then we can at least eliminate this as a seizure trigger. I think the levels are likely to be OK.
Other than that, there's nothing that the GP can do but monitor things and review them over the past months. We do that all the time ourselves, of course.
Monday, 6 June 2011 9:00 AM.
I seem to have slept well, till almost 8 AM, and wasn't woken by a seizure. That's pretty much all I ask for these days, though there are still signs around that it could happen.
It's very much a normal winter's day here in Armidale - cold, clear and sunny. I remember years, especially during the drought here, that June could have 28 days frost out of 30. I don't think it will be like that this year.
I'm talking of the weather so that's a fair sign there's nothing major to report!
Sunday, 5 June 2011 10:35 AM.
I'll make it a short entry today.
As so often happens, things turn around. I was awakened at 6 AM by quite a strongish seizure. I guess, in Richter terms, about 5.5 on the scale if that's any help.
It started in the right hand and traversed the right side of my body, leaving me feeling weak and dispirited for some time. I did recover from that after sleeping/ resting an extra 2 hrs, though was conscious I should have got medications into me as soon as possible. I just felt unwilling to move.
The right arm has lost some of the gains of the past weeks, and walking is now more difficult again. But what to do but pick yourself up once again and move on? No headaches. Just weariness.
It's halfway through the cycle. It's not the first time it's happened like this, at this time in the cycle, so if there aren't any more seizures, then the game is still on. But I do feel the signs that there may be aftershocks.
I'll take it very easy today. Things could be much worse. I'm here, lucid enough, and recovered pretty well. But I'm not fond of this new pattern of being wakened by a seizure. It's a bit disconcerting, as if an intruder was standing there by the bedside shaking you awake.
Friday, 3 June 2011 9:10 AM.
My baby daughter has reminded me that I haven't posted an entry here even though it's already well into June. Golly gosh and all - Bimbo Brown's 65th birthday! Please celebrate it by sharing with me my most read amusing story about Bimbo Brown.
Things have definitely settled somewhat after the ups and downs immediately following the last infusion. I have been taking things a bit more quietly (more TV, less computing, I'm claiming, though I'm not sure Tracey would agree entirely).
Next week is shaping to be busy, with medical appointments at the forefront. Some decisions - not major ones - need to be made. Do I need to continue Clexane injections for now? My stomach is more like the moon with its humps and bumps than a balloon (don't push that analogy too far...) after hundreds of daily or twice daily injections. We have no evidence of further clotting in the sense that I haven't had swollen feet in ages. Maybe we can give it a rest. We'll ask the GP.
We still have to decide on the wisdom or otherwise of having another MRI. No matter what it reveals, it can't change anything as far as treatment is concerned, but the irregular signals given out immediately following the last infusion gave us cause to revisit that option. If we do it, it will certainly have a psychological impact, and that's what we have to consider.
I have completed the next part of my 'Illusion...' meanderings and that will go up soon. I can't believe that I lost a portion of it and I'm not telling you how because it's too dumb, but I had to reconstruct that. It'll be there before the day is out.
Tuesday, 31 May 2011 9:20 AM.
The day's started pretty well, no problems worth complaining about. That's all really!
Sunday, 29 May 2011 9:00 AM.
It's been an up and down week but this one seems to be starting better. My head feels almost clear. No headaches. Perhaps the Avastin is now flowing through the system. It might have settled Brian down for a little bit longer.
Perhaps for the first couple of days after the infusion he was trying to tear my brains out in protest at being starved yet again of his blood supply, hence the headaches and discomfort. That's what Avastin does. It cuts down his food supply, and without that, he can't flourish as he wants.
In the meantime, let's think positive. Though mobility is limited, and though I'm shaky walking, I can still think logically depending on the input and what's retained. It's important you know that. Things can drop out of immediate memory, just like that! Not things from my distant past, but what happened just last week. Or day. With part of the story missing, judgment can fail. I think I've written to someone only to find a half-written draft, not sent. Bear that in mind if you've been expecting a response!
My constitution is basically strong, but so are some of the drugs I've been hammering my system with for 18 months now. I get internal pains that come and go. Sometimes I think that's organs like liver and kidneys protesting at chemicals they're processing hour after hour ceaselessly and which may be attacking them.
Yet, so far, they're holding.
Really, I think I've been comparatively lucky so far, thanks to the love and forbearance of those around me. How could I not be grateful for that?
The daily 8.50 AM train has just left on its way to Sydney. One toot at the crossing and it's gone. Time for some toast, I think.
Friday, 27 May 2011 5:50 PM.
Feeling better after a long sleep. The nagging headache appears to be gone. Let's hope it stays that way. (NOTE TO SELF: don't stay up too late. Give brain a chance....)
Friday, 27 May 2011 8:19 AM.
I'll write more later. I need to sleep again now. It hasn't been a particularly good night, but I feel better now.
I did complete the Alaska story. I hope you enjoy it.
Thursday, 26 May 2011 8:04 AM.
The infusion is over, with no major problems. The psychological effect was to feel better immediately. Yet I failed to sleep well last night - I was awake about 4 AM and couldn't sleep, so eventually got up round 5 AM and wrote a draft of the final bit of the Alaskan story. It's nearly done.
I've eaten and now feel cold. Balance issues are now my greatest worry. I'm not sure why the effect is so pronounced.
On the credit side, no seizures in the last 3 week cycle, greater strengthening of the right arm. No headaches. More exercise required! But I will go back and rest now.
Next infusion, 15 June. Next oncologist visit, 20 June (Alice's birthday!) May is almost over.
Will we get another MRI done? We have been mulling over that one.
Monday, 23 May 2011 9:26 AM.
A storm in the wee small hours, followed by plenty of rain overnight, and an overcast day so far.
I confess to some concern over control of lower limbs. This manifests in a feeling of 'rubberiness' of the hip and knee joints. If I stand for a few minutes, I find myself 'sinking' and having to make a conscious effort to raise myself to normal height.
I remember feeling this way when the beneficial effects of the steroids were wearing off in August last year, before we committed to Avastin. Tracey says that the research indicates that extended use of Avastin can have the same effect. I'm sure that's right. You cannot expect a powerful drug that alters body chemistry not to have other side effects, especially after eight months' use.
It is not painful.
This would explain that feeling of extreme heaviness while walking, poor control of balance, and general lassitude. Generally, apart from increasing lapses in short term memory, only the motor control centre in the brain seems much affected. I find myself wanting simply to sleep more. Writing will have to wait, especially writing that demands concentration.
Sunday, 22 May 2011 1:08 PM.
There now! I cleaned out the backlog of entries, which can always be found here if you want to backtrack a bit (but you don't.) My head is seriously spinning right now, but that's because I've overdone the morning rather than anything else.
Looking at the week in retrospect, I can't complain. I have had no headaches, just an increased bodily heaviness and weariness as the days closer to the next Avastin hit come to an end. I haven't been as assiduous in my exercises for a few days - well, the whole three week cycle, if the truth be told. Maybe it just happens that way sometimes.
All in all, it's been a good period. The hope is for the usual revitalisation of the system on Wednesday. It's probably fair to say at the moment that no news can be taken as good news, or, steady state at the very least. In the circumstances, one cannot really expect better.
I'm sleeping now.... see you later in the day
Saturday, 21 May 2011 12:35 PM.
I've done it again - fiddled round till the time has gone and I have only just finished the first part of my Alaskan saga. I'm about to go to sleep again now but will just say that I continue to be OK. We went out last night for the first time in many months, and met with friends we hadn't seen for quite some time. I have to admit I was zonked by the time we got home.
Thursday, 19 May 2011 11:30 AM.
Nothing of special interest to report. In fact, I feel quite stable overall, though getting a bit weary by this time in the morning. I am sleeping well. That always makes a big difference. Back to Alaska.... until the urge to sleep knocks me over, and there's no knowing quite when that will happen. I usually wake after a few hours, feeling refreshed.
Wednesday, 18 May 2011 12:35 PM.
I am bad. I started looking at articles that had been referred to me by friends, and the morning simply disappeared, and my head's fogging up.
My Alaskan story remains unwritten, which means that the moment I go to rest later, I will start rewriting the unwritten story in my mind yet again.
Oh well, that's the penalty for indiscipline. Forgive me O my sisters, for I was also intending to write to you. I'll get there!
All's OK with me, but that back problem for Tracey has GOT to be solved. A week today till the next Avastin shot.
Tuesday, 17 May 2011 9:40 AM.
Look at that! Sunday passed without a weekly roundup - and I thought Monday was Sunday. Tomorrow's hump day - middle of the week - and then we're suddenly sliding down the hump into the weekend.
Seem that's the way the time goes for me. A mad career into who knows where and when. Maybe it's the same for everyone.
All is OK with me but Tracey still has bad back problems. She needs to rest more. Oh yes she could! But she doesn't.
Me, I am adjusting to the cold weather by changing sleeping patterns, getting up later in the morning. I am sleeping soundly and comparatively untroubled. I do get sporadic vision problems at times and have balance issues, but I am working on increasing physical strength. I'm pleased to see the return of triceps in the right arm! The bicep isn't all that impressive. Its usefulness is still limited but way better than it was nine months ago. I could do more but there are simply so many things I want to do in one day.
Enough. I am going to start writing the story today of the really weird time I gave evidence in a court in Alaska. No, I'm not making this up or going totally dotty. Just you wait and see.
Saturday, 14 May 2011 8:11 AM.
When I wrote my last entry here I thought that the blog creating program had been mended, but that proved not to be true, and it has only come back online this morning. In case it goes pear-shaped yet again, I'll just say that all is well here in chilly Armidale. The sun is shining but not with very much power, but at least the nasty wind has dropped.
I don't have much to moan and groan about medically. I wake with a 'hangover' feeling each morning and today was no exception. After doing some brief exercise it usually clears and goes back to a dull fog. Already it's halfway through the Avastin 3 week cycle so I'm expecting the batteries to flatten slowly from here on till the next one. Its effectiveness is waning but for the moment it is doing the best job it can to keep the tumour in check.
I've been writing about my White Russian friend from Yarwun: another childhood experience. There really are so many stories to be told....
Wednesday, 11 May 2011 9:40 AM.
That's better! Blogger has solved its programming problem and given control back to us. I'm feeling good, but wishing that Tracey had left Christian to put that large log on the fire instead of doing it herself. He would gladly have done so - but as a result, she now has a painful backache. So now I'm trying to get HER to take it easy. Hah! Please read on....
Sunday, 8 May 2011 10:25 AM.
Time to look back over the week. It was a transitional one for the three-week cycle. That is to say, having an Avastin infusion on Wednesday is a watershed event. It marks the point between the time my batteries are at their lowest and the feeling of renewal that comes with Avastin’s attack on the tumour and any inflammation of the brain that has been building when my defences were at their lowest earlier in the week.
(This is the first paragraph of what began as an entry here, but is now in extended form as a normal blog entry. Please read on by following this link.)
