[For current week's postings, see WHAT'S NEW!]
Tuesday 22 October, 2013 3.45 PM.
I'm about to go to sleep on this hot day. I can feel my fingers and arm pinging, which is a warning to me that it's a really good idea.
I had sharp stomach pain when I woke from sleep yesterday afternoon. I don't know what that was about but there's been no return. Maybe I have to wait till after my sleep this afternoon before I'm sure it was once-off. This morning I've had a strong session of foggy head syndrome which makes it even more important that I sleep now. Warmest day of this summer in Armidale.
Sunday, 20 October, 2013. 9.20 AM.
It’s so crass to say, ‘I can't believe it's Sunday again’ but it is. I just noticed, and corrected, for the sake of accuracy, the fact that in the two previous entries, I wrote 'November' as the month and not 'October', and that indicates pretty well the state of my confused mind.
I had strange seizures in the past 24 hours. I felt the iron grip for quite some time on the upper torso, but very few spasms, and last night a quite short period of facial seizures, mainly affecting the right eye, but it left me with increased blurred vision as the physical position of the eye actually alters for quite some time [hours, or until after I sleep]. I'd like to think that this is the sole cause of the blurred vision, but it isn't so, for if I close one eye I have double vision, and then swap to the other, it is just as affected, so this has to do with permanent interference with the optic nerve feeding both eyes. Not auguring well. My typing speed has now slowed to a crawl, as I find it better to make sure I'm striking every key, the right key, than dash ahead and do corrections at the end.
My feet seem now to be swollen permanently, which can be accounted for almost certainly by kidney dysfunction. Again, this makes it all the more probable that I’ll be over the limit when the proteinuria results are known early next week.
If that happens, and Avastin effectively ceases, it will have been late September since the last Avastin treatment. This will have given the tumour a good chance to go into an accelerated growth phase. Whether it will actually do that remains to be seen [for others, experienced for me.]
Friday, 18 October, 2013, 12.45 PM.
I'm doing my best to retain physical balance but it's increasingly difficult. To try to stay upright I need the frame in front of me so I have four balance points – both legs and both arms. Unfortunately, my right had is literally losing its grip. Only the left hand is secure. Balance becomes less stable as a result, making standing exercise more problematic, but not impossible. There are still some I can do, mainly for upper body, either lying down or sitting on the bed. It’s important to keep physical strength up no matter what.
I am so sleepy right now it's as if someone has slipped me a Mickey Finn. I’ll rest. I must.
Wednesday, 16 October, 2013. 2.00 PM.
This is to report that there's not a great deal to report. I've continued to exercise as much as I can in between sessions of reading and writing, which is just what I want to do. Somewhere round midday, I go through a period of intense drowsiness. Today it passed without my giving in to it, which I happily do at times, but I will surely sleep later in the day.
My chief annoyances now are tremors on the right side. They are not general but affect one limb and may extend if I don't find some other position for it. They’re not at all painful – just a hindrance – but are becoming more widespread and frequent.
I sleep heavily and wake after the afternoon one thinking it's morning. It takes a while, especially as we’re getting close to the equinox, to work out just what time it is. Not having enough focus to read the clock makes for odd interpretations. Sometimes 6 pm. Sometimes 12.30 pm.
Monday, 14 October, 2013. 1.48 PM.
We’ve just heard back from Oncology. The result was very bad – a much higher reading from the proteinuria test that puts me way over the acceptable limit.
Giving Avastin will be abandoned for the next two weeks at least. I’ll begin another 24 hour urine test beginning Thursday week [i.e., 24 October], and see what the reading is.
This means that the kidneys will have an extra two weeks to recover from the last Avastin infusion, and therefore may register a lower result. The down side is that it also gives the tumour an extra two weeks without any limitation Avastin might be providing.
If the next proteinuria test is unsatisfactory... we'll cross that bridge when we come to it.
And so the balancing game continues.
Sunday, 13 October, 2013. 5.00 PM.
I woke at my usual time – about 4 am – and did nearly an hour of exercises that stretched my limbs and made them feel good. I then felt tired enough to go back to sleep instead of my usual practice of getting up. I slept till 8.30 am and felt a whole heap better for it - more alert and mobile [even though I'm not really, but psychology is important.]
Weekly roundup. I'm pleased the weather is warming at last. Yesterday is the first day since sometime last summer I didn’t feel cold without some form of heating.
There was such variety in the week that I won’t try to summarise – just read back through the week’s entries below. My main concerns are to retain enough balance and to hope that my eyesight doesn't deteriorate any further. I've had few seizures but they’ve been destructive in unexpected ways. I've noticed fewer throat seizures but more in the eyes. I'm not sure which is worse. Or, optimistically, better.
Saturday, 12 October, 2013. 7.30 AM.
Thursday, 10 October, 2013. 8.40 AM.
I've felt on the edge of a seizure since waking at 6 but lay quietly for an hour, and it may have passed - for now at least. The worst thing about seizures is not knowing when or if they'll stop, and how serious they'll get. Either way could see me in an ambulance in 15 minutes. So far so good.
I do the 24 hour proteinuria test over the next day. On this basis my future is decided.
Wednesday, 9 October, 2013. 1.15 PM.
Had our mother been alive she would have been 93 today. Vale Joan Wright.
It was an unpleasant night last night. After an afternoon sleep I awoke with stomach pain, which was relieved temporarily by eating but returned even before I'd ended the meal [of vegetables in a light sauce]. It remained there and was relieved only after I'd been to the toilet. At least it seems obviously not direct kidney failing but related to bowel, as it wasn’t high in the stomach area. It hasn't returned and I don't know the cause, because I had a salad for lunch and a plain biscuit with tea mid-afternoon.
I had a series of seizures before bed, attacking mainly the face. The after-effects I've described before and you don't need another one.
After I went to bed I woke at 3.30 AM and moved slightly – enough to set off another series of seizures, but on a wider front – enough to produce the effect of suffering lack of oxygen. I suppose some would call that breathlessness or shortness of breath. It was worst when I was lying down, and I believe it to be the seizure affecting lung operation. After some time and sitting up, it subsided.
I went back to sleep, till about 8.30 AM. We’re still adjusting to DST here, so what with lack of sleep it's hardly surprising it was as late as that. By the time I got to a sitting position, I was hit with another seizure, down the whole right side. Everything seemed to stabilise after that as far as I can recall, and it's been OK ever since, except that now I feel intolerably drowsy.
I am so slow at doing everything!
Tuesday, 8 October, 2013. 10.30 AM.
Things were going too smoothly, I suppose. Last night I had strong facial seizures and this morning, even stronger, going down into the trunk. The right side of my face feels a bit like it's been mugged in a back alley.
The worst part is the effect on eyesight, because the focus has changed once more. This is the reason there's no point in thinking about a trip to the optometrist. It’ll just change again, maybe several times a day.
Voice has also slurred and slowed. Worst is the effect on my brain, as concentration is poor and thinking slow. Frustrating. I’ll take more rest this morning, probably. There are so many things I want to do instead of sleeping but I have to take into account the Law of Diminishing Returns.
What I really have to watch for is the effect on mobility. Each seizure makes walking more difficult and hazardous.
It also affects my ability to judge key pressure and spacial awareness. I do unexpected things as well, like striking the BACKSPACE key instead of ENTER and vice versa. Try randomly choosing those and see what you get.
C’est la vie.
Sunday, 6 October, 2013. 9.25 AM
The week has been quite calm. I've had virtually no seizures of any sort but it hasn't stopped the decline in leg strength nor allowed me to build flexibility in the fingers and thumb that's needed for taking more than a few steps with the frame. The periods of intense drowsiness persist. Double, blurred and distorted vision in both eyes remain a problem for typing and tremors in the right leg and arm are increasing. The tremors can affect mobility.
Responses 29 Sept - 12 Oct:
Denis Wright September 29, 2013 at 3:26 PM
The following question appeared on
July 2013 Medical Updates to current week
I thought I'd also post it here.
Thank you Mr. Wright, for sharing your journey with us. In Dec., 2010, my 61-year old sister-in-law was diagnosed with gbm level 4. After the initial surgery, radiation, and chemo, 15 months ago she was put on Avastin, every 2 weeks. We were wondering whether you have been on Avastin alone or in combination with any other chemotherapy drug. Our family's best wishes go out to you.
Anonymous October 1, 2013 at 8:52 AM
My very good wishes to you and Tracey for the month of October. Anne P.
Anonymous October 7, 2013 at 6:19 AM
absolutely understand how difficult it is to write ... but still, do continue to write even if just to say 'hello' if possible at all, even when there is 'nothing very significant to report'. under the circumstances, just a word has so much significance at this time.
Julie Lake October 10, 2013 at 8:35 PM
Just letting you know that your faithful ex-student is still reading this blog every day or so. Not with pleasure, exactly. But with love.
Anonymous October 11, 2013 at 10:31 PM
So is your newish twitter friend Anne P. good luck with your proteinuria test today.
Wednesday, 2 October, 2013. 4.00 PM
Nothing very significant to report. One annoying headache for half a day, but sleep eased it. My sleeping patterns are more erratic than ever. When I sleep, it's very deep sleep. I'm off to sleep now.
Sunday, 29 September, 2013. 4.10 PM.
I wrote 29 DECember by mistake and it gave me a very odd feeling....
I should make this a monthly roundup – from memory, which is rather dangerous. The most important thing was being able to stay under the limit for the proteinuria test, which meant I was able to get two full treatments three weeks apart. As far as I can see, the negative effects haven't been too obvious, but the positive effects haven't been so obvious either.
The periods of intense drowsiness daily are an annoyance and the only way to deal with them is sleep, which disrupts routine. As a result, I may be up at 4 am and go to bed at 8 am, and sleep all morning. That can't happen on days I'm showered, of course. That, incidentally, is working well. Sometimes like a naughty boy I don't wanna shower right then because I'm doing other things, but in half an hour or so, it's done and I'm glad the bad boy didn't get his way.
I'm beginning to have more difficulty with tremors [not seizures] of the right arm which can extend right down the right side. These are usually when I'm cold or just got up before doing any stretches. I've experimented when one begins with letting it go unchecked. It becomes more and more violent until the entire bed shakes. I've stopped it at that point just by gripping it firmly and steadying it. It could have got even more violent, but sometimes it's a good idea to end an experiment before pushing it as far as it can go.
I've had the usual periods of seizures now focused on the head, but specifically on the eye and mouth muscles – twitches, in other words. Vision is affected until after the next sleep period has ended. The one period of headaches per three weeks also happened.
Obviously I've got to be more and more careful, and I've got to keep exercising whatever muscles I can. Most importantly, I've got to take as few risks as possible. The frustration factor in that can be very high. Caution has to take precedence.
There is no hiding the fact that the month has seen a continuation of the decline that takes us closer and closer to immobility. We'll do our best to stave it off.
Thursday, 26 September 2013. 4.30 PM.
I thought I'd posted yesterday but time was a bit scrambled after returning from Oncology.
Really there was nothing untoward about the infusion. It went beautifully. When I got home, I was tired and tried to sleep, but the post-Avastin effects now are a metal taste to saliva, and a thickening of it, making it difficult to lie down without coughing and much throat-clearing, and a wheezy chest.
So I gave up trying to sleep, but by early evening got the first seizure in days, mainly affecting the eyes. I think the left one kind of syncs with the right when it's doing its winking and blinking. It wasn’t a long seizure but resulted in blurred vision from then on and worse, double vision.
I had dinner at the usual time and went to bed a little earlier than usual. By then, the salivary glands seem to have settled down, and there wasn’t much coughing. I slept till 3.30 AM or so. I couldn't sleep, but read till breakfast after which I soon went to sleep. I developed a headache which I think is more due to disrupted sleeping pattern than to the tumour – and probably to the effect of the Avastin in my system. I can't tell. No-one can.
So there's no doubt my system is coping less well with the Avastin. This is hardly surprising given that one could reasonably have expected a maximum of 15 infusions all up, and this is No. 51!
Right now the nagging headache persists but isn't serious. I have had no more seizures but feel a strictly regimented pill taking routine is advisable, as seizures usually occur not long before taking them [and when I talk about them, like this.]
I’ll stop. We fight another day, and see what the effects are in the next days.
Tuesday, 24 September 2013 10:56 AM.
Avastin will go ahead tomorrow. Thanks to cheating the test by taking in very low levels of protein for nearly a week, I actually improved on the performance of the previous week by a little bit.
I'd like to say that this isn't a time for getting too excited about it all, because we are fairly certain the negative effects of the treatments are increasing all the time while the benefits fall. But as we can never know which is the best course of action in an absolute sense, we must stick to the original plan and go with the treatment. Then, as usual, it's day to day.
My eyes are focusing very poorly at the moment. It's rather frustrating when there's little difference in viewing the screen between glasses on and off. There have been no seizures in the past 48 hrs at least, but the slowing down of all functions remains as a looming critical issue.
Sunday, 22 September 2013. 1.23 PM.
It's been a mixed week, starting and ending with quiet periods but with some ructions in between, especially with focal seizures to the head, loss of speech function, and increased difficulty walking. Double vision is now a constant problem, although it isn't so bad after I've been sleeping. Most of the time the screen for the right eye is blurred. There's no point going to the optometrist because it will be different tomorrow.
Both the right arm and the right leg are becoming more and more unresponsive. I'm having some trouble with the mechanics of typing. I'm also finding periods of intense drowsiness which come on very rapidly. (In fact, I'm experiencing one right now, and am struggling to keep my eyes open. I feel as if I could just drop off to sleep instantly. Sometimes I do. Tracey, I'm sure, comes in and sees me with my one and only useful hand on the computer keys, sound asleep.
The PTU test is complete. It is now impossible to know if Avastin is having a positive, negative, or neutral effect. But if we're offered it on Wednesday then of course we'll take it. There's no point stopping it if Avastin is available.
Thursday 19 September, 2013. 7.10 PM.
It's been a pretty tough couple of days in some ways after that period of relative calm earlier in the week. Multiple seizures of the face are starting in hands but going quickly to the throat and face. This causes inability to speak to varying degrees.
They are also travelling deeper into the head, I feel. Other motor functions are getting interfered with. Annoyingly I notice difficulty in selecting the right keys on the computer, meaning that I'm slowing down with my writing, which is very frustrating. It slows typing speed dramatically and I'm doing many corrections. Eyesight problems don't help. After the last couple of seizures I have very poor focus and blurring.
My ability to walk with the frame is also suffering badly, not only because the right leg and foot are weakening with every seizure, but the destruction of the grasping ability of the right hand is getting more complete with each one. The combination of these two is now a great threat to the mobility I have been fighting to retain.
The PTU test is under way. It will end tomorrow. Perhaps then I get the chance to partake in the Moet and cake!
Tuesday, 17 September, 2013. 12.30 PM.
The last two days have been relatively peaceful, with minor seizures, but my eyes are still blurred. This comes and goes. The more sleep I have the better, but the sleep times are becoming more unpredictable. I am usually in the syndrome where I waken from the afternoon sleep and I think it’s the next morning, and am quite surprised to find that it's almost dinner time.
Testing myself with ‘What did I have for dinner last night?’ is a good exercise – especially when it's actually evening and we haven't had dinner yet.
My right arm and hand generally have become less responsive day by day. When I go to sleep sometimes, I wonder what this thing is in the bed with me, and it turns out to be my right arm. It's a peculiar sensation – I think I've mentioned it before.
The degree of spasticity of the arm has gone up a lot in the time since I left the hospital. Fortunately I can make the fingers grip sufficiently to be able to use the walker unless I'm really tired, but I have to take it very slowly. Distances to travel are limited to the bathroom and the lounge, though now on rare occasions I go as far as the study.
But as you see, I can still think relatively logically. I was going to say, think and type at the same time, but the myriad of corrections I have to do on the way through tends to suggest otherwise.
Otherwise, it's OK. Things could be a lot worse, but we're doing our level best to hold off the time when they are, and still retain that most essential of all things – quality of life.
Comments September 2013
Anonymous September 3, 2013 at 3:18 PM
Well I thought the test results on Monday, and your consequent choice to go with the Avastin, was good news. Here's hoping that the Avastin can work its magic for a good while more for you.
I read your concern re the fall in hospital affecting the test results, so was sort of expecting a 'fail'. Your resilience continues to amaze, and long may that be.
kvd
Julie Lake September 9, 2013 at 9:02 PM
Still between the devil and the deep blue sea - a saying, by the way, of unknown origin but first recorded in the 17th century. Just thought you'd like to know that, Denis! I just researched it as I've often wondered what it meant and where it came from. Scylla and Charybdis, by comparison, I've actually seen my own fair self. Or at least where Odysseus is supposed to have encountered them. Either way, hard and horrible choices with which the rest of us can only try and empathise from a distance and hope we never have to make ourselves. I have sometimes wondered in this past couple of years whether you have found any sort of consolation in TV, being so housebound (and now bedbound) and, if so, has being so ill changed your tastes and inclinations in any way? Might make a blog post if you can summon up the energy. I'm curious as to whether you want to be amused or informed or just entertained or none of the above.
Ros September 17, 2013 at 11:09 PM
Quality of life - and cognitive function. When we went to the Royal Melbourne Hospital some years ago for David to have his annual review with his Neurologist, Dr John King, he saw on the MRI that there was deterioration in the spinal chord, but no new leissions in the brain.
Dr King's comment burnt itself into my brain: "If you had to chose, between being able to walk, or think, which one would it be?"
A no-brainer, really! :)
Anonymous September 21, 2013 at 1:32 AM
Your very difficult questions are impossible for me to contemplate any answers. However the questions and questioners fill me with admiration. They also make me very much more conscious of the alternative which I am daily seeing in my sister - in- law. She ie very elderly with rapidly developing dementia which she cannot understand, a house she cannot sell as we have found it riddled with termite damage, no capacity to remember what we have just told her and great fear about it all. She is also angry at times and suspicious of us but has the physical capacity to do almost anything. Oh to retain the capacity to ask your questions and pose your thoughtful, insightful answers.
Hats off to both of you, one who sees from the inside and one as a carer. My good wishes to you both. Anne P.
chrispydog September 19, 2013 at 9:48 PM
Not good news Denis. One thing that might help with typing is Microsoft does voice to text, and my 12yr old son was showing me the other day. I knew it was there but never used it myself, but I just thought it might be useful.
Anonymous September 22, 2013 at 3:32 PM
I don't want to tax your reading ability, so I'll just say XXXXXOOOOO. Pegs. : )
Julie Lake September 26, 2013 at 8:21 AM
Very much enjoying the Asian history articles. I still maintain a strong interest in Asian affairs. After all, I once had this really excellent lecturer....!!!! And sometimes his wise words still ring in my ear - particularly when he was mildly defending Islam against my occasional criticisms!
Bob September 26, 2013 at 11:24 AM
Part 1: Hi Denis. After a lot of trial and error, I am sending this in two parts as it is too long for the system. Sorry about that but there are things I want to say.
Good morning Denis. The first kookaburras are calling and so I rolled out of bed before the wildlife became any noisier – but isn’t it a lovely sound. I had been lying there, as frequently happens, thinking of you and realised that I will one day regret having not said things to you while you are still with us. There have been elements of superstition and denial in starting to do this but, as you have described so well your day-to-day expectations, I am going to do so. Hope I am not being insensitive.
Do you remember the days of the good old Readers’ Digest? “I Was Joe’s Hernia” and stuff like that? You – and I say it sincerely – would be my nomination for: “The most remarkable person I have ever met”. I guess that, as a former satellite student of yours, I should quantify that statement.
Upon meeting you for the first time about 20 years ago, I thought you were the most instantly likeable human being I had come across. From talking to others, I realise this was a common reaction to you; something which undoubtedly helped in your life as an educator. And all your life, and through these terrible recent years, a natural educator is what you have been and what you still are. (I know you think it less important now, but I still don’t start a sentence with “However”).
When you discovered your brain tumour and started on your blog about three years ago, you said your purpose was “ to use this experience to try to illuminate life as well as demystify the journey”. You have certainly succeeded in doing that. (In passing, I note that your blog has attracted more than a third of a million visits, and that its inclusion in the Australian National Library Pandora Archive will preserve its lessons for many others in years to come).
So what have you taught us over the past few years?
Courage in adversity when there is no hope of improvement. An unbelievable objectivity without complaint. An appreciation of the small daily things in life – flowers, changing seasons, human kindnesses. You have continued to value what you still retain and have thereby taught us to appreciate our own good fortune.
And you have fulfilled the real function of education; you have taught us to think for ourselves while, at the same time, providing us with the knowledge which forms a framework for that thinking.
Bob September 26, 2013 at 11:25 AM
Part 2:
You are an “historian in Asian studies, comparative religions, movie-maker and observer of the world” ... so, teacher, I can only ask you to look with tolerance on my fumbling for words in the field of your expertise.
What I am pondering on concerns ‘balance’. You have achieved a fine line of thinking, and of action, in acceptance and non-acceptance; in attachment and non-attachment. What I am trying to say is that you have accepted a situation over which you have no control but have not accepted a passive, fatalistic approach to it. You also give the impression that you have not shown undue attachment to those things you have gradually lost, but have fought to make the most of those things still available to you.
The Dao De Jing might say: ‘This is called Wisdom’.
I’m afraid I have rather rambled on and, while we all hope you continue to defy the odds, and to communicate with us, at least my thoughts and appreciation have not been left unsaid.
That all sounds very nice but please don’t think we are unaware of the near-impossible stresses and strains the past three years must have imposed upon you both. While we can only slightly comprehend these from your blog, we do get some inkling of what it has been like.
You have frequently expressed your love and admiration for Tracey, whose silent suffering and courage must at least equal your own. We, your friends, Denis, share that admiration for Tracey, with gratitude.
We hope that you continue to be with us for as long as you have an acceptable quality of life. Otherwise, as I may have said before ... whenever, wherever, we wish you a soft landing.
Ah, now the currawongs have taken over from the kookaburras. Must be time for early-morning tea.
With thanks for everything, and love to you both.
Ros September 27, 2013 at 7:48 AM
Just trying on the idea of "double vision" gives me a sense of rising panic in my gut. You write about such matters with equanimity and an air of calm. Is that how you feel as these symptoms overtake you, even if temporarily?
Your blood, and spirit, and attitude towards what is happening to you - ought to be bottled and shared around to the rest of us.
xxR
Denis Wright September 29, 2013 at 3:26 PM
The following question appeared on
July 2013 Medical Updates to current week
I thought I'd also post it here.
Thank you Mr. Wright, for sharing your journey with us. In Dec., 2010, my 61-year old sister-in-law was diagnosed with gbm level 4. After the initial surgery, radiation, and chemo, 15 months ago she was put on Avastin, every 2 weeks. We were wondering whether you have been on Avastin alone or in combination with any other chemotherapy drug. Our family's best wishes go out to you.
Sunday 8 September, 2013. 11.00 AM.
There have not been any real highs and lows in this Avastin week to talk about. I've had more facial seizures but I've now got used to the fact that I get them. They're not painful but annoying, with what look like exaggerated winks and blinks while they're on, and a lot of other facial movement.
There's a further deterioration in right arm function. I can't even grip something in a pincer hold between fingers and thumb, which means I have to be extra careful when using the frame. It's OK as long as I need it just to take weight downward. My right leg has become less responsive, so now I need plenty of time to walk a short distance.
Vision is also affected and even with glasses, there's a good deal of blurring. It varies, but right now the full stop key looks more like a semicolon, and the S like §. This is in both eyes and far worse without glasses. No point in going to the optometrist because it will be different again tomorrow. I had one day of headache two days after Avastin but that's gone. That's par for the course.
Tuesday 22 October, 2013 3.45 PM.
I'm about to go to sleep on this hot day. I can feel my fingers and arm pinging, which is a warning to me that it's a really good idea.
I had sharp stomach pain when I woke from sleep yesterday afternoon. I don't know what that was about but there's been no return. Maybe I have to wait till after my sleep this afternoon before I'm sure it was once-off. This morning I've had a strong session of foggy head syndrome which makes it even more important that I sleep now. Warmest day of this summer in Armidale.
Sunday, 20 October, 2013. 9.20 AM.
It’s so crass to say, ‘I can't believe it's Sunday again’ but it is. I just noticed, and corrected, for the sake of accuracy, the fact that in the two previous entries, I wrote 'November' as the month and not 'October', and that indicates pretty well the state of my confused mind.
I had strange seizures in the past 24 hours. I felt the iron grip for quite some time on the upper torso, but very few spasms, and last night a quite short period of facial seizures, mainly affecting the right eye, but it left me with increased blurred vision as the physical position of the eye actually alters for quite some time [hours, or until after I sleep]. I'd like to think that this is the sole cause of the blurred vision, but it isn't so, for if I close one eye I have double vision, and then swap to the other, it is just as affected, so this has to do with permanent interference with the optic nerve feeding both eyes. Not auguring well. My typing speed has now slowed to a crawl, as I find it better to make sure I'm striking every key, the right key, than dash ahead and do corrections at the end.
My feet seem now to be swollen permanently, which can be accounted for almost certainly by kidney dysfunction. Again, this makes it all the more probable that I’ll be over the limit when the proteinuria results are known early next week.
If that happens, and Avastin effectively ceases, it will have been late September since the last Avastin treatment. This will have given the tumour a good chance to go into an accelerated growth phase. Whether it will actually do that remains to be seen [for others, experienced for me.]
Friday, 18 October, 2013, 12.45 PM.
I'm doing my best to retain physical balance but it's increasingly difficult. To try to stay upright I need the frame in front of me so I have four balance points – both legs and both arms. Unfortunately, my right had is literally losing its grip. Only the left hand is secure. Balance becomes less stable as a result, making standing exercise more problematic, but not impossible. There are still some I can do, mainly for upper body, either lying down or sitting on the bed. It’s important to keep physical strength up no matter what.
I am so sleepy right now it's as if someone has slipped me a Mickey Finn. I’ll rest. I must.
Wednesday, 16 October, 2013. 2.00 PM.
This is to report that there's not a great deal to report. I've continued to exercise as much as I can in between sessions of reading and writing, which is just what I want to do. Somewhere round midday, I go through a period of intense drowsiness. Today it passed without my giving in to it, which I happily do at times, but I will surely sleep later in the day.
My chief annoyances now are tremors on the right side. They are not general but affect one limb and may extend if I don't find some other position for it. They’re not at all painful – just a hindrance – but are becoming more widespread and frequent.
I sleep heavily and wake after the afternoon one thinking it's morning. It takes a while, especially as we’re getting close to the equinox, to work out just what time it is. Not having enough focus to read the clock makes for odd interpretations. Sometimes 6 pm. Sometimes 12.30 pm.
Monday, 14 October, 2013. 1.48 PM.
We’ve just heard back from Oncology. The result was very bad – a much higher reading from the proteinuria test that puts me way over the acceptable limit.
Giving Avastin will be abandoned for the next two weeks at least. I’ll begin another 24 hour urine test beginning Thursday week [i.e., 24 October], and see what the reading is.
This means that the kidneys will have an extra two weeks to recover from the last Avastin infusion, and therefore may register a lower result. The down side is that it also gives the tumour an extra two weeks without any limitation Avastin might be providing.
If the next proteinuria test is unsatisfactory... we'll cross that bridge when we come to it.
And so the balancing game continues.
Sunday, 13 October, 2013. 5.00 PM.
I woke at my usual time – about 4 am – and did nearly an hour of exercises that stretched my limbs and made them feel good. I then felt tired enough to go back to sleep instead of my usual practice of getting up. I slept till 8.30 am and felt a whole heap better for it - more alert and mobile [even though I'm not really, but psychology is important.]
Weekly roundup. I'm pleased the weather is warming at last. Yesterday is the first day since sometime last summer I didn’t feel cold without some form of heating.
There was such variety in the week that I won’t try to summarise – just read back through the week’s entries below. My main concerns are to retain enough balance and to hope that my eyesight doesn't deteriorate any further. I've had few seizures but they’ve been destructive in unexpected ways. I've noticed fewer throat seizures but more in the eyes. I'm not sure which is worse. Or, optimistically, better.
COMMENTS:
Bob October 14, 2013 at 5:36 PMThinking of you Denis. Love to you both.
Denis Wright October 21, 2013 at 3:47 PMThanks, Bob.
Joan October 19, 2013 at 9:22 AMI'm still here, Denis, reading your blog every day. I know things are not improving for you, but it looks as though you're going to make it to year 4, coming up very soon. How wonderful for the rest of us to continue to have you in our lives. All my love to you, Tracey, and Christian. You are always in my thoughts, especially when the china cabinet comes crashing down. What a story!! Your poor mother. To lose all her china in one swell foop, instead of piece by precious piece, like the rest of us. I once broke a set of glass mixing bowls prized by my mother. She went straight to bed. My father bought her another, identical set. Yellow, not puce.
Denis Wright October 21, 2013 at 4:05 PMThanks. Joan. Lucky a new set of bowls were available.
The crockery disaster was worse than I thought. As Jan emailed me;
The sad thing was that as well as Granny's dishes etc, there was Mum's and Dad's precious dinner set, which was a wedding present from her mother and father, Nana and Grandad Miles - and for that reason, she treasured it. She and Dad received it during the war of course, when everything was scarce and it was a nice big one, complete with covered tureen, gravy boat etc. There was also a large serving platter and this was one thing that survived.
Anonymous October 20, 2013 at 10:32 AMHi Dennis, Sending you and your family lots of love and sunshine, Still checking in on your blog!
Denis Wright October 21, 2013 at 4:12 PMMany thanks, Renee. It's good to hear from you. Trusting all's well with you and yours....
Bob October 20, 2013 at 4:26 PMOh dear, Denis. I don't know what we can say, except that we're still here, checking on you and trying to be with you every day. It's all happening as you expected ... albeit three years later. As long as you can type, keep going. We will try and overlook any grammatical errors!!!
Denis Wright October 21, 2013 at 4:17 PM
It's not the grammar that worries me - it's when I start posting really weird stuff that does. Oh well - as long as it's entertaining.
Saturday, 12 October, 2013. 7.30 AM.
I tend to wake each morning with an oxygen starved feeling and dull stomach pain. The best relief for this is to get up, do exercises, and then sit in my chair. I’ll catch up on sleep later. I'm making more and more mechanical mistakes with typing, and it takes more effort to think clearly. Everything I do seems to be at about ¼ pace.
Results for the proteinuria test may not be known until Wednesday, when the Avastin infusion is scheduled.
Thursday, 10 October, 2013. 8.40 AM.
I've felt on the edge of a seizure since waking at 6 but lay quietly for an hour, and it may have passed - for now at least. The worst thing about seizures is not knowing when or if they'll stop, and how serious they'll get. Either way could see me in an ambulance in 15 minutes. So far so good.
I do the 24 hour proteinuria test over the next day. On this basis my future is decided.
Wednesday, 9 October, 2013. 1.15 PM.
Had our mother been alive she would have been 93 today. Vale Joan Wright.
It was an unpleasant night last night. After an afternoon sleep I awoke with stomach pain, which was relieved temporarily by eating but returned even before I'd ended the meal [of vegetables in a light sauce]. It remained there and was relieved only after I'd been to the toilet. At least it seems obviously not direct kidney failing but related to bowel, as it wasn’t high in the stomach area. It hasn't returned and I don't know the cause, because I had a salad for lunch and a plain biscuit with tea mid-afternoon.
I had a series of seizures before bed, attacking mainly the face. The after-effects I've described before and you don't need another one.
After I went to bed I woke at 3.30 AM and moved slightly – enough to set off another series of seizures, but on a wider front – enough to produce the effect of suffering lack of oxygen. I suppose some would call that breathlessness or shortness of breath. It was worst when I was lying down, and I believe it to be the seizure affecting lung operation. After some time and sitting up, it subsided.
I went back to sleep, till about 8.30 AM. We’re still adjusting to DST here, so what with lack of sleep it's hardly surprising it was as late as that. By the time I got to a sitting position, I was hit with another seizure, down the whole right side. Everything seemed to stabilise after that as far as I can recall, and it's been OK ever since, except that now I feel intolerably drowsy.
I am so slow at doing everything!
Tuesday, 8 October, 2013. 10.30 AM.
Things were going too smoothly, I suppose. Last night I had strong facial seizures and this morning, even stronger, going down into the trunk. The right side of my face feels a bit like it's been mugged in a back alley.
The worst part is the effect on eyesight, because the focus has changed once more. This is the reason there's no point in thinking about a trip to the optometrist. It’ll just change again, maybe several times a day.
Voice has also slurred and slowed. Worst is the effect on my brain, as concentration is poor and thinking slow. Frustrating. I’ll take more rest this morning, probably. There are so many things I want to do instead of sleeping but I have to take into account the Law of Diminishing Returns.
What I really have to watch for is the effect on mobility. Each seizure makes walking more difficult and hazardous.
It also affects my ability to judge key pressure and spacial awareness. I do unexpected things as well, like striking the BACKSPACE key instead of ENTER and vice versa. Try randomly choosing those and see what you get.
C’est la vie.
Sunday, 6 October, 2013. 9.25 AM
The week has been quite calm. I've had virtually no seizures of any sort but it hasn't stopped the decline in leg strength nor allowed me to build flexibility in the fingers and thumb that's needed for taking more than a few steps with the frame. The periods of intense drowsiness persist. Double, blurred and distorted vision in both eyes remain a problem for typing and tremors in the right leg and arm are increasing. The tremors can affect mobility.
It would be nice to think of the decrease in seizures as heralding some sort of overall encouraging sign but the experience of others when seizures have ceased has been that they’ve begun a period of quicker if somewhat benign decline, where the person has become increasingly dependent and less able to function in every respect. We can only wait to see if that the case with me.
I begin another proteinuria test on Thursday to see if Avastin will be given next week. I have given up trying to guess.
I begin another proteinuria test on Thursday to see if Avastin will be given next week. I have given up trying to guess.
Responses 29 Sept - 12 Oct:
Denis Wright September 29, 2013 at 3:26 PM
The following question appeared on
July 2013 Medical Updates to current week
I thought I'd also post it here.
Thank you Mr. Wright, for sharing your journey with us. In Dec., 2010, my 61-year old sister-in-law was diagnosed with gbm level 4. After the initial surgery, radiation, and chemo, 15 months ago she was put on Avastin, every 2 weeks. We were wondering whether you have been on Avastin alone or in combination with any other chemotherapy drug. Our family's best wishes go out to you.
My answer:
Every case is different but she followed my path except hers are 2 weekly and mine 3. For the first couple of treatments it was monthly in conjunction with chemotherapy. The chemotherapy was obviously failing so that's when we went to just 3 weekly and that’s how it's been for nearly 3 years. As you see above we feel the drug is rapidly losing its effectiveness.
Anonymous October 1, 2013 at 8:52 AM
My very good wishes to you and Tracey for the month of October. Anne P.
Denis Wright October 2, 2013 at 3:54 PMMany thanks, Anne. And to you and the Powles tribe. I guess that makes you a matriarch!
Anonymous October 7, 2013 at 6:19 AM
absolutely understand how difficult it is to write ... but still, do continue to write even if just to say 'hello' if possible at all, even when there is 'nothing very significant to report'. under the circumstances, just a word has so much significance at this time.
Denis Wright October 7, 2013 at 12:43 PMVery good advice, and thank you. I'll continue to write medical reports several times per week, even just to say 'nothing to report'’
Julie Lake October 10, 2013 at 8:35 PM
Just letting you know that your faithful ex-student is still reading this blog every day or so. Not with pleasure, exactly. But with love.
Anonymous October 11, 2013 at 10:31 PM
So is your newish twitter friend Anne P. good luck with your proteinuria test today.
Denis Wright October 12, 2013 at 7:25 AMResults for the proteinuria test may not be known until Wednesday, when the Avastin infusion is scheduled.
Wednesday, 2 October, 2013. 4.00 PM
Nothing very significant to report. One annoying headache for half a day, but sleep eased it. My sleeping patterns are more erratic than ever. When I sleep, it's very deep sleep. I'm off to sleep now.
Sunday, 29 September, 2013. 4.10 PM.
I wrote 29 DECember by mistake and it gave me a very odd feeling....
I should make this a monthly roundup – from memory, which is rather dangerous. The most important thing was being able to stay under the limit for the proteinuria test, which meant I was able to get two full treatments three weeks apart. As far as I can see, the negative effects haven't been too obvious, but the positive effects haven't been so obvious either.
The periods of intense drowsiness daily are an annoyance and the only way to deal with them is sleep, which disrupts routine. As a result, I may be up at 4 am and go to bed at 8 am, and sleep all morning. That can't happen on days I'm showered, of course. That, incidentally, is working well. Sometimes like a naughty boy I don't wanna shower right then because I'm doing other things, but in half an hour or so, it's done and I'm glad the bad boy didn't get his way.
I'm beginning to have more difficulty with tremors [not seizures] of the right arm which can extend right down the right side. These are usually when I'm cold or just got up before doing any stretches. I've experimented when one begins with letting it go unchecked. It becomes more and more violent until the entire bed shakes. I've stopped it at that point just by gripping it firmly and steadying it. It could have got even more violent, but sometimes it's a good idea to end an experiment before pushing it as far as it can go.
I've had the usual periods of seizures now focused on the head, but specifically on the eye and mouth muscles – twitches, in other words. Vision is affected until after the next sleep period has ended. The one period of headaches per three weeks also happened.
Obviously I've got to be more and more careful, and I've got to keep exercising whatever muscles I can. Most importantly, I've got to take as few risks as possible. The frustration factor in that can be very high. Caution has to take precedence.
There is no hiding the fact that the month has seen a continuation of the decline that takes us closer and closer to immobility. We'll do our best to stave it off.
Thursday, 26 September 2013. 4.30 PM.
I thought I'd posted yesterday but time was a bit scrambled after returning from Oncology.
Really there was nothing untoward about the infusion. It went beautifully. When I got home, I was tired and tried to sleep, but the post-Avastin effects now are a metal taste to saliva, and a thickening of it, making it difficult to lie down without coughing and much throat-clearing, and a wheezy chest.
So I gave up trying to sleep, but by early evening got the first seizure in days, mainly affecting the eyes. I think the left one kind of syncs with the right when it's doing its winking and blinking. It wasn’t a long seizure but resulted in blurred vision from then on and worse, double vision.
I had dinner at the usual time and went to bed a little earlier than usual. By then, the salivary glands seem to have settled down, and there wasn’t much coughing. I slept till 3.30 AM or so. I couldn't sleep, but read till breakfast after which I soon went to sleep. I developed a headache which I think is more due to disrupted sleeping pattern than to the tumour – and probably to the effect of the Avastin in my system. I can't tell. No-one can.
So there's no doubt my system is coping less well with the Avastin. This is hardly surprising given that one could reasonably have expected a maximum of 15 infusions all up, and this is No. 51!
Right now the nagging headache persists but isn't serious. I have had no more seizures but feel a strictly regimented pill taking routine is advisable, as seizures usually occur not long before taking them [and when I talk about them, like this.]
I’ll stop. We fight another day, and see what the effects are in the next days.
Tuesday, 24 September 2013 10:56 AM.
Avastin will go ahead tomorrow. Thanks to cheating the test by taking in very low levels of protein for nearly a week, I actually improved on the performance of the previous week by a little bit.
I'd like to say that this isn't a time for getting too excited about it all, because we are fairly certain the negative effects of the treatments are increasing all the time while the benefits fall. But as we can never know which is the best course of action in an absolute sense, we must stick to the original plan and go with the treatment. Then, as usual, it's day to day.
My eyes are focusing very poorly at the moment. It's rather frustrating when there's little difference in viewing the screen between glasses on and off. There have been no seizures in the past 48 hrs at least, but the slowing down of all functions remains as a looming critical issue.
Sunday, 22 September 2013. 1.23 PM.
It's been a mixed week, starting and ending with quiet periods but with some ructions in between, especially with focal seizures to the head, loss of speech function, and increased difficulty walking. Double vision is now a constant problem, although it isn't so bad after I've been sleeping. Most of the time the screen for the right eye is blurred. There's no point going to the optometrist because it will be different tomorrow.
Both the right arm and the right leg are becoming more and more unresponsive. I'm having some trouble with the mechanics of typing. I'm also finding periods of intense drowsiness which come on very rapidly. (In fact, I'm experiencing one right now, and am struggling to keep my eyes open. I feel as if I could just drop off to sleep instantly. Sometimes I do. Tracey, I'm sure, comes in and sees me with my one and only useful hand on the computer keys, sound asleep.
The PTU test is complete. It is now impossible to know if Avastin is having a positive, negative, or neutral effect. But if we're offered it on Wednesday then of course we'll take it. There's no point stopping it if Avastin is available.
Thursday 19 September, 2013. 7.10 PM.
It's been a pretty tough couple of days in some ways after that period of relative calm earlier in the week. Multiple seizures of the face are starting in hands but going quickly to the throat and face. This causes inability to speak to varying degrees.
They are also travelling deeper into the head, I feel. Other motor functions are getting interfered with. Annoyingly I notice difficulty in selecting the right keys on the computer, meaning that I'm slowing down with my writing, which is very frustrating. It slows typing speed dramatically and I'm doing many corrections. Eyesight problems don't help. After the last couple of seizures I have very poor focus and blurring.
My ability to walk with the frame is also suffering badly, not only because the right leg and foot are weakening with every seizure, but the destruction of the grasping ability of the right hand is getting more complete with each one. The combination of these two is now a great threat to the mobility I have been fighting to retain.
The PTU test is under way. It will end tomorrow. Perhaps then I get the chance to partake in the Moet and cake!
Tuesday, 17 September, 2013. 12.30 PM.
The last two days have been relatively peaceful, with minor seizures, but my eyes are still blurred. This comes and goes. The more sleep I have the better, but the sleep times are becoming more unpredictable. I am usually in the syndrome where I waken from the afternoon sleep and I think it’s the next morning, and am quite surprised to find that it's almost dinner time.
Testing myself with ‘What did I have for dinner last night?’ is a good exercise – especially when it's actually evening and we haven't had dinner yet.
My right arm and hand generally have become less responsive day by day. When I go to sleep sometimes, I wonder what this thing is in the bed with me, and it turns out to be my right arm. It's a peculiar sensation – I think I've mentioned it before.
The degree of spasticity of the arm has gone up a lot in the time since I left the hospital. Fortunately I can make the fingers grip sufficiently to be able to use the walker unless I'm really tired, but I have to take it very slowly. Distances to travel are limited to the bathroom and the lounge, though now on rare occasions I go as far as the study.
But as you see, I can still think relatively logically. I was going to say, think and type at the same time, but the myriad of corrections I have to do on the way through tends to suggest otherwise.
Otherwise, it's OK. Things could be a lot worse, but we're doing our level best to hold off the time when they are, and still retain that most essential of all things – quality of life.
Sunday, 15 September, 2013. 4.30 AM.
The week scurried by so quickly that I can't believe it's roundup time again. It's been a rather tempestuous ending to the week, with a series of seizures before and after sleeping that certainly upset the system and will have repercussion in the week to come. The last was a bad facial and head seizure that was quite uncomfortable to the extent that I was forced to lie down at about 9 pm and it knocked me out till 12.30 pm, and I've been awake ever since.
It's impossible to say whether it's just a patch that will settle down or ushers in a period of more debilitating seizures. We just have to see. In the meantime, we play it by ear. At the end of the week, I do another proteinuria test, which of course has come around at blistering speed.
I feel tired enough at last to go to bed as the first of the dawn chorus begins.
It's impossible to say whether it's just a patch that will settle down or ushers in a period of more debilitating seizures. We just have to see. In the meantime, we play it by ear. At the end of the week, I do another proteinuria test, which of course has come around at blistering speed.
I feel tired enough at last to go to bed as the first of the dawn chorus begins.
Comments September 2013
Anonymous September 3, 2013 at 3:18 PM
Well I thought the test results on Monday, and your consequent choice to go with the Avastin, was good news. Here's hoping that the Avastin can work its magic for a good while more for you.
I read your concern re the fall in hospital affecting the test results, so was sort of expecting a 'fail'. Your resilience continues to amaze, and long may that be.
kvd
Denis Wright September 8, 2013 at 6:24 AMYes, I believe we did the right thing. The other choice was to admit that all avenues available to us to prolong life were now officially closed, and we see what happens - which really means, how long will it go on, at what quality of life, and the decisions we take day to day.
For the moment, we try to eke out of the Avastin what we can.
Julie Lake September 9, 2013 at 9:02 PM
Still between the devil and the deep blue sea - a saying, by the way, of unknown origin but first recorded in the 17th century. Just thought you'd like to know that, Denis! I just researched it as I've often wondered what it meant and where it came from. Scylla and Charybdis, by comparison, I've actually seen my own fair self. Or at least where Odysseus is supposed to have encountered them. Either way, hard and horrible choices with which the rest of us can only try and empathise from a distance and hope we never have to make ourselves. I have sometimes wondered in this past couple of years whether you have found any sort of consolation in TV, being so housebound (and now bedbound) and, if so, has being so ill changed your tastes and inclinations in any way? Might make a blog post if you can summon up the energy. I'm curious as to whether you want to be amused or informed or just entertained or none of the above.
Denis Wright September 11, 2013 at 3:43 AMI don't know the origin Julie, but I'd like to think it was on the plank between the sea and the enemy for those poor pirates and others who had to walk it. I'm pretty sure if you were on the plank, then it would feel like that sort of 'choice'. I guess I have been on that plank for quite a while now.
You raised a good question, which makes me realise that a lot of people don't really understand exactly what stage I am at right now. That might well make a good blog post.
I don't watch much TV at all because I have so many other interests in reading and writing, that most of what is on TV seems terribly boring. The world is in such a mess that I find it hard, in my circumstances especially, to get very interested in politics that put us in this position. But I still care very much about the world that I'm going to leave behind.
I am pretty much housebound, it is true, but that is by choice, because of the difficulties that getting out and about create for both Tracey and me. These wouldn't stop us from going anywhere if that is what we chose to do, but right now I'm happier in this environment.
I definitely would not say that I'm bed-bound because I spend as little time as possible in bed. Mostly I spend it there just to sleep. I spend most of my time in one chair or another, doing the things I really want to do with the help of the computer – that is, the whole world that the internet provides for me. Otherwise I spend time in doing exercises that will keep me as mobile as I possibly can be.
Ros September 17, 2013 at 11:09 PM
Quality of life - and cognitive function. When we went to the Royal Melbourne Hospital some years ago for David to have his annual review with his Neurologist, Dr John King, he saw on the MRI that there was deterioration in the spinal chord, but no new leissions in the brain.
Dr King's comment burnt itself into my brain: "If you had to chose, between being able to walk, or think, which one would it be?"
A no-brainer, really! :)
Denis Wright September 18, 2013 at 1:34 AMYes. Although what about the question, ‘if you were paralysed from the neck down, what at this stage in your life would you hope to happen next?’
Ros September 18, 2013 at 6:04 PMGood question.It'd be hard to know until/unless you were right in that situation. I guess my answer from this point in my life, knowing what I know, experienced what I've experienced etc etc is: IT DEPENDS.Depends on * Am I in uncontrolled / uncontrollable pain?* What impact is my condition having on the people I love?* Is there any meaning, outside survival, in my life* Is there anyone in my life for me to continue loving - and who is loving me back?Complicated - and not an easy question to answer.But a good one to ask. xxR
Anonymous September 21, 2013 at 1:32 AM
Your very difficult questions are impossible for me to contemplate any answers. However the questions and questioners fill me with admiration. They also make me very much more conscious of the alternative which I am daily seeing in my sister - in- law. She ie very elderly with rapidly developing dementia which she cannot understand, a house she cannot sell as we have found it riddled with termite damage, no capacity to remember what we have just told her and great fear about it all. She is also angry at times and suspicious of us but has the physical capacity to do almost anything. Oh to retain the capacity to ask your questions and pose your thoughtful, insightful answers.
Hats off to both of you, one who sees from the inside and one as a carer. My good wishes to you both. Anne P.
Denis Wright September 22, 2013 at 2:45 PMYours is a terribly difficult question. Different in some ways but not unrelated. The worst thing I see about it is the dementia.
Before this ends for me, my state may approach it. The difficulty is that in that state I may not recognise it, and regard myself as fully sane. I’m sure my mother would have as her dementia worsened – but if she could have seen herself as we all did, she would have agreed and been horrified at what she’d become. She wouldn't have wanted to be alive in that state.
You know that your s-i-l is gone, mentally, and there is virtually no chance that she’ll return. We know that in Australia she will remain here in body until it fails. It's the law and it protects the right of the insane to keep living. There are arguments in favour of this, yet the price will be borne by her relatives. Look at the multiplicity of issues raised here! I'm too tired to draw them out right now.
Denis Wright September 22, 2013 at 2:04 PMRos; and the best answer, in my opinion. I would take your last question to be a sub-question of the previous one.
These have to be weighed up. As time goes by I have to consider them more and more.
I'll have more to say about this in blog postings very soon. Soon because it has to be.
chrispydog September 19, 2013 at 9:48 PM
Not good news Denis. One thing that might help with typing is Microsoft does voice to text, and my 12yr old son was showing me the other day. I knew it was there but never used it myself, but I just thought it might be useful.
Denis Wright September 22, 2013 at 5:46 PMThanks for the suggestion, good buddy.
I've experimented with speech-to-text on the iPad. It can be amazingly good if I speak the right way to it. It is quite good if I just want to get information across, if I'm not at that time suffering the effects of a seizure on the larynx, and if I'm very clear-headed about what I intend to say. It involves thinking ahead a long way. I was never much good at dictation because I didn't think in that way. I still don't.
The worst thing for me about it is that it affects my writing style for blog entries. Sure I can get ideas down, but the finished product can be something different from what I intended.
For me those are serious drawbacks, but I recognise there are times to compromise.
Anonymous September 22, 2013 at 3:32 PM
I don't want to tax your reading ability, so I'll just say XXXXXOOOOO. Pegs. : )
Denis Wright September 22, 2013 at 5:52 PMNo problem reading, Pegs. I know people understand if I don't reply. They know silence signifies agreement.
Julie Lake September 26, 2013 at 8:21 AM
Very much enjoying the Asian history articles. I still maintain a strong interest in Asian affairs. After all, I once had this really excellent lecturer....!!!! And sometimes his wise words still ring in my ear - particularly when he was mildly defending Islam against my occasional criticisms!
Denis Wright September 29, 2013 at 7:53 AMBut you must have heard all that stuff before from me at Res Schools!
I have my own problems with some aspects of Islam, but I hope I was defending it for the right reasons. There is so much negativity about Islam generally in this country from non-Muslims [fueled by an anti-Muslim press] and gross ignorance on the part of many people [not you!] that sometimes an antidote needs applying.
Bob September 26, 2013 at 11:24 AM
Part 1: Hi Denis. After a lot of trial and error, I am sending this in two parts as it is too long for the system. Sorry about that but there are things I want to say.
Good morning Denis. The first kookaburras are calling and so I rolled out of bed before the wildlife became any noisier – but isn’t it a lovely sound. I had been lying there, as frequently happens, thinking of you and realised that I will one day regret having not said things to you while you are still with us. There have been elements of superstition and denial in starting to do this but, as you have described so well your day-to-day expectations, I am going to do so. Hope I am not being insensitive.
Do you remember the days of the good old Readers’ Digest? “I Was Joe’s Hernia” and stuff like that? You – and I say it sincerely – would be my nomination for: “The most remarkable person I have ever met”. I guess that, as a former satellite student of yours, I should quantify that statement.
Upon meeting you for the first time about 20 years ago, I thought you were the most instantly likeable human being I had come across. From talking to others, I realise this was a common reaction to you; something which undoubtedly helped in your life as an educator. And all your life, and through these terrible recent years, a natural educator is what you have been and what you still are. (I know you think it less important now, but I still don’t start a sentence with “However”).
When you discovered your brain tumour and started on your blog about three years ago, you said your purpose was “ to use this experience to try to illuminate life as well as demystify the journey”. You have certainly succeeded in doing that. (In passing, I note that your blog has attracted more than a third of a million visits, and that its inclusion in the Australian National Library Pandora Archive will preserve its lessons for many others in years to come).
So what have you taught us over the past few years?
Courage in adversity when there is no hope of improvement. An unbelievable objectivity without complaint. An appreciation of the small daily things in life – flowers, changing seasons, human kindnesses. You have continued to value what you still retain and have thereby taught us to appreciate our own good fortune.
And you have fulfilled the real function of education; you have taught us to think for ourselves while, at the same time, providing us with the knowledge which forms a framework for that thinking.
Bob September 26, 2013 at 11:25 AM
Part 2:
You are an “historian in Asian studies, comparative religions, movie-maker and observer of the world” ... so, teacher, I can only ask you to look with tolerance on my fumbling for words in the field of your expertise.
What I am pondering on concerns ‘balance’. You have achieved a fine line of thinking, and of action, in acceptance and non-acceptance; in attachment and non-attachment. What I am trying to say is that you have accepted a situation over which you have no control but have not accepted a passive, fatalistic approach to it. You also give the impression that you have not shown undue attachment to those things you have gradually lost, but have fought to make the most of those things still available to you.
The Dao De Jing might say: ‘This is called Wisdom’.
I’m afraid I have rather rambled on and, while we all hope you continue to defy the odds, and to communicate with us, at least my thoughts and appreciation have not been left unsaid.
That all sounds very nice but please don’t think we are unaware of the near-impossible stresses and strains the past three years must have imposed upon you both. While we can only slightly comprehend these from your blog, we do get some inkling of what it has been like.
You have frequently expressed your love and admiration for Tracey, whose silent suffering and courage must at least equal your own. We, your friends, Denis, share that admiration for Tracey, with gratitude.
We hope that you continue to be with us for as long as you have an acceptable quality of life. Otherwise, as I may have said before ... whenever, wherever, we wish you a soft landing.
Ah, now the currawongs have taken over from the kookaburras. Must be time for early-morning tea.
With thanks for everything, and love to you both.
Denis Wright September 29, 2013 at 8:16 AMDear Bob, I'm going to let your far too generous comments go through to the keeper but acknowledge the care with which they were written, and the undoubted sincerity. I don't believe I've lived up to them but then if I did believe it all, my head would be stuffed with unearned pride. More accurately, vanity.
Thanks for the kind words and I'll happily agree in one respect - your remarks about Tracey, which are richly deserved. No words will ever express the love and gratitude I feel for her.
And now I must rest again before trying to go on.
Ros September 27, 2013 at 7:48 AM
Just trying on the idea of "double vision" gives me a sense of rising panic in my gut. You write about such matters with equanimity and an air of calm. Is that how you feel as these symptoms overtake you, even if temporarily?
Your blood, and spirit, and attitude towards what is happening to you - ought to be bottled and shared around to the rest of us.
xxR
Denis Wright September 29, 2013 at 6:42 PMYes, that's how I feel. - which isn't to say I don't care that it’s happening – I care a great deal. I just assess every time I wake what I can do and what I can't.
My blood’s full of chemicals and not worth a brass razoo. They wouldn't accept it at the blood bank, that's for sure. The blood of yours and carers everywhere would be a hundred times better – vampires would go for you lot anytime!
Denis Wright September 29, 2013 at 3:26 PM
The following question appeared on
July 2013 Medical Updates to current week
I thought I'd also post it here.
Thank you Mr. Wright, for sharing your journey with us. In Dec., 2010, my 61-year old sister-in-law was diagnosed with gbm level 4. After the initial surgery, radiation, and chemo, 15 months ago she was put on Avastin, every 2 weeks. We were wondering whether you have been on Avastin alone or in combination with any other chemotherapy drug. Our family's best wishes go out to you.
My answer:
Every case is different but she followed my path except hers are 2 weekly and mine 3. For the first couple of treatments it was monthly in conjunction with chemotherapy. The chemotherapy was obviously failing so that's when we went to just 3 weekly and that’s how it's been for nearly 3 years. As you see above we feel the drug is rapidly losing its effectiveness.
Tuesday 10 September, 2013. 6.00AM
It seems a quiet time, almost a week after the Avastin infusion. As yet I seem to have had no obvious reaction to it – usually large blotches appearing of the right arm, but not this time. Perhaps this reflects the 6 weeks layoff.
On the debit side, it is getting harder to walk as the right leg gets more unresponsive. Most serious is the further loss of grip by the right hand. The pincer action of the hand is gone. To grip an object between finger and thumb is impossible.
This also affects capacity to use the walking frame, which needs a secure grip by both hands to be safe. That in turn has implications for getting into the bathroom on my own. I can do it, but have to take considerable time.
This is a good example of the knock-on or domino effect of what seem on the surface to be minor things. A small seizure in the thumb in the end weakens ability to walk.
I've been doing all sorts of exercises, usually between 5 and 6 AM, to try to retain what mobility I have. These are in the form of long stretches and rotations of joints attempting symmetrical movements of arms and legs. I can do this safely with the sturdier of the two walking frames in front of me and the bed behind. Having the work undone by a seizure is disheartening, but there's nothing for it but to save what I can while I can.
This also affects capacity to use the walking frame, which needs a secure grip by both hands to be safe. That in turn has implications for getting into the bathroom on my own. I can do it, but have to take considerable time.
This is a good example of the knock-on or domino effect of what seem on the surface to be minor things. A small seizure in the thumb in the end weakens ability to walk.
I've been doing all sorts of exercises, usually between 5 and 6 AM, to try to retain what mobility I have. These are in the form of long stretches and rotations of joints attempting symmetrical movements of arms and legs. I can do this safely with the sturdier of the two walking frames in front of me and the bed behind. Having the work undone by a seizure is disheartening, but there's nothing for it but to save what I can while I can.
Sunday 8 September, 2013. 11.00 AM.
There have not been any real highs and lows in this Avastin week to talk about. I've had more facial seizures but I've now got used to the fact that I get them. They're not painful but annoying, with what look like exaggerated winks and blinks while they're on, and a lot of other facial movement.
There's a further deterioration in right arm function. I can't even grip something in a pincer hold between fingers and thumb, which means I have to be extra careful when using the frame. It's OK as long as I need it just to take weight downward. My right leg has become less responsive, so now I need plenty of time to walk a short distance.
Vision is also affected and even with glasses, there's a good deal of blurring. It varies, but right now the full stop key looks more like a semicolon, and the S like §. This is in both eyes and far worse without glasses. No point in going to the optometrist because it will be different again tomorrow. I had one day of headache two days after Avastin but that's gone. That's par for the course.
Friday, 6 September, 2013. 8.00 AM.
I think I'm feeling the benefit from the Avastin treatment. I feel as if I have more life in me today. I've been able to move more freely. I don't know how much of this psychology or physiology, but I suppose we'll see as the weekend goes along. No matter what, I'm glad that I had the infusion last Wednesday.
I've had very few seizures all week, and that certainly makes me feel better.
Wednesday, 4 September, 2013. 5.00 PM.
Avastin was administered this afternoon. It went smoothly. So now we wait and see the effects. Our experience has been a bit of a wild ride at the first part of the 3 week cycle. The difference this time is that it's been 6 weeks, so who knows?
We'll see. My hoped-for effect will be a loosening up of the shackles a bit on messages from brain to everywhere else as I recall from the very first dose, but that was three years ago, and much has changed since then. Almost everything! We can but hope.
Monday, 2 September, 2013. 5.10 pm.
I will be having Avastin – on Wednesday. The test result showed that I was just under the level that would have put an end to the treatment.
Although we're glad we got this result, we're pretty sober about it. We know that a dose of Avastin at this time could effectively put the kidneys out of business very quickly. It's a chance I choose to take, and with which Tracey agrees.
It's been six weeks since the last Avastin dose. I have certainly been getting weaker and weaker daily, so on balance, Avastin on Wednesday is the best we could hope for – and we have to face it all again in three weeks' time, even under the best of conditions. So we aren't jumping around for joy – we're just pleased that what we both see as the better of the two results has come up.
If nothing else, it's going to be an interesting three weeks ahead.
Sunday, 1 September, 2013. 12.30 PM.
I've been trying to recall the blur that is the week that was. We've entered Spring, officially, and there were many times in the past few months when I felt sure I would never see Spring in a condition to enjoy it.
As the week went by the notable and alarming seizures peaked and then seem to have fallen away a little, so that most of them have been mild. I can only be grateful for that. More disconcerting is the increase in general weakness, especially in the legs, and I have been doing as much exercise as possible to keep the strength there that remains. I've also been conscious of trying to keep strength in my arms, so they can compensate as much as possible when the right leg is hard to lift.
There's not much else that can be done about it. The most important thing in the week to come is the result of the PTU test I had at the end of last week. We'll know about that on Tuesday. Any resumption of Avastin depends entirely upon that result and there's nothing to do about it but to wait and see.
If I fail that test, then we simply have to deal with the circumstances as they arise. If I pass the test and the dose of Avastin is given, then it will also be interesting to see if there is any noticeable beneficial effect, or whether it will be worth it to go on with the treatment, even if it is available.
To be realistic, I think that, if I do manage to pass this test, I suspect it's likely to be the last one. With another full dose of Avastin in my system, it's likely that the level of protein in urine will be well over the limit the next time around, and I don't see much possibility after that of continuing with the treatment.
One final rather sobering thought on the whole matter is this. Each time I've suffered a fall in the past, the level of protein has risen sharply. It must be remembered that I did suffer a fall at the hospital and that was after the last PTU test. I haven't yet got over that fall and it may well have a similar effect for the analysis under way to every one in the past.
I sometimes forget that people don't read to the end of a blog posting or don't understand the significance of some of the things I've written. This is my fault. I write about joyful things and play down the significance of the bad. Some people with experience of medical matters of this type see immediately where things are heading. Others don't. Seizure activity has been mounting all week, in size, duration and areas affected. Post-seizure activity has been very debilitating as body responds less to brain.
Take what's written in the Sunday roundup just below. We've had calls from people who believe that I'm on the way to recovery because of the way I've put the good things first. This is false hope. My mistake.
If you are under this impression, please look at the paragraph below that's in bold face and italicised. It's the most important part of the posting. It tells you that we are at the end of the line. There never was going to be a cure in my case; at this stage, we just fight on to extend the battle that further inch while some quality of life exists. It's fading, and I'm tired.
Treat this as a companion piece to the new blog entry.
Sunday, 25 August, 2013. 7.00 AM.
Sunday roundup. They come so quickly.
Homecoming was as joyful as I'd hoped. Christian wheeled me up the ramp and through the front door. I struggled up and out of the wheelchair, and with the aid of the frame we had at home, I came gung-ho at full snail's pace down the hallway. I ignored for the moment the way the rest of the house had been so well set up, and made for the bedroom and bathroom.
I had one thing in mind alone, and that was whether or not I could get through the sliding door between the two without anyone else to help me - just the walking frame, get to the shower chair all by myself using the frame, turn around to stand at the hand-basin, and use the toilet, and get out of there to either bed or chair – unaided by any other person.
I could do all of these. I. Me. Myself. No matter how clumsy and clunky, or how long it took. That meant that in the most vital of respects, I was independent. Only then could I think about every other pleasurable thing about being home.
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The other vital thing about the bedroom is the Rinnai space heater. This keeps the temperature controlled to a comfortable level. The armchair is my electrically operated one, as is the bed for certain functions.
So the room has the advantages of my hospital one without the drawbacks. The only major difference is that Tracey doesn't have available to her those bearers of food and water, dispensers of pills, bathroom attendants, cleaners, tea ladies, bedmakers, etc. All these duties are down to the carer, one in number – Tracey.
But there will be help with showering/dressing and for Tracey a couple of hours weekly to go out, probably frolics such as buying medicines and groceries. Not a lot of help at all, but enough to make a difference. It's adjustable.
The lounge is cheery and warm, with my normal armchair there, so we can do some normal social things. I have no wish to be a total recluse in the bedroom.
Everything is a near to perfect as it gets in these ways, but as usual something has to happen. Yesterday afternoon, I fell into the period of great weariness, and settled for a sleep. I was woken after five minutes by a feeling of nausea bordering on pain, and what started out as a "normal" focal seizure. It ran through the right hand and arm, but travelled quickly to the neck and head. Although it seemed to be the whole of my face, it was probably just the right side, but very violent lip tremors, eye blinking and rolling, eyebrow twitching and head pain. The arm seemed to get into the act too – the whole right side. It went on for much longer than usual but stopped at last.
I think we're seeing the effect of the tumour unrestrained by whatever controlling effect Avastin may be having. If the PTU test fails for a second time and Avastin isn't administered in ten days, then I see no way of exerting any further control, as all other treatments are at their maximum. Anything else will extend the drowsiness, slow down brain function further and make me sleep for longer periods.
On waking this morning I was disturbed to find that great effort was needed to get upright, and I was unsteady on my feet. Although the muscular damage to upper leg from the fall is mending, as is the right hand, some of the elan has for the moment at least evaporated. If seizures stay away, it might come back.
Nearly 10.00 AM. It's a long time, three hours, to compose so few paragraphs. But it makes sense, doesn't it?
COMMENTS
Anonymous August 13, 2013 at 12:36 PM
Hello,
I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.
He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.
I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x
Rachel
Denis Wright August 14, 2013 at 9:25 PM
Rachel: you have raised several very, very important issues with this comment, for which I thank you enormously. I hope your father's path from here on is a smooth one. I also support kvd's comment below to the hilt.
I don't have the energy to write now [read my response to Joan above!] but I will definitely return to them, because they are close to my heart.
Denis Wright September 1, 2013 at 1:03 PM
Rachel: I'm sure you think I've forgotten this but I haven't. I've made it part of a separate posting which will appear on the front side of the blog.
Anonymous August 14, 2013 at 9:03 AM
Your August 14th entry here has provided all of us who are reading your blog, a calm and wise mantra when it comes to our similar (but different) time which will come in our lives:
'I'm afraid it's a time when I have to say, "This is about me, and not what you may want."'
Denis and Tracey - quintessential teachers
xxRos
Denis Wright August 20, 2013 at 1:57 PM
It seems a harsh thing to say, but my "stress" level is now so knife-edge that unbelievable things push it over the edge. And we now know the consequences of this.
Ros August 18, 2013 at 3:47 PM
You have a great talent for being, and feeling, positive, Dr Wright.
Thank the gods et al.
xx
Julie Lake August 19, 2013 at 8:07 PM
Just letting you know I'm still on the line, so to speak. Like the Wichita linesman! My dear friend Susan has just left today to live in...Armidale! I'm going to miss her a lot but hope to get down there from time to time to visit. I don't know why anyone would leave beautiful Tamborine but if one must, Armidale is not such a bad choice and I do hope it turns out to be all she hopes it will. I shall be reading this blog with interest to see how things pan out when you get home.
Denis Wright August 25, 2013 at 2:27 PM
Sometimes changes to address are related entirely to circumstances other than beauty of surroundings, aren't they? Maybe they just need a change of climate... or job. Spring here is beautiful. Nice to see you online. I'm even more pleased that I am!
Bob August 25, 2013 at 2:24 PM
So good to hear that you are home again Denis. It sounds as though the warmth and comfort you have there leaven, to some extent, the extreme downturns. I know we all like to think of you there, with Tracey, rather than in hospital ... no matter how much the hospital provided for you. Love to you both.
ReplyDelete
Replies
Denis Wright August 26, 2013 at 1:56 PM
Tracey has set it up beautifully. It makes everything so much easier.
Ros August 25, 2013 at 10:07 PM
Rinnai heater - good. Very good. Is it plumbed gas - or bottled?
Nursing service for showering and dressing - good. Very good.
Seizure - bad. Very bad.
Wife and Carer - good. Very, very good.
xxR
Denis Wright August 26, 2013 at 2:13 PM
Electric. These used to be ferocious on power in the old days, but we're assured these are much more efficient. OK, we'll see. All I know is, without heating that room, all sorts of complications arise.
Seizure - rotten. Very very destructive. Permission to use obscenities on the high end of the scale.
Wife and carer - indispensable.
Anonymous August 26, 2013 at 1:23 AM
"Gung-ho at full snail's pace" - what a wonderful and paradoxical expression. But, to be home, what a joy it must be! There are certain people who would not accept the assistance of shower chairs and walking frames (to their detriment), so to be able to take advantage of these must be fantastic. To be warm in Armidale right now is a formidable achievement in itself (I recall that you can't even clean out the wood heater till Labour Day in early October, having lit it on Anzac Day), but to have a chair and a bed which actively assist you in doing what you want is superb. I feel obliged to report that leaving home on the NSW South Coast today for a special event in Sydney caused me to leave home massively overdressed. I could have worn a skimpy summer dress, except that I left home at 9.45am. At least in Armidale you know where you stand (except for those students who wear mini-skirts and midriff tops all year round. And then there was the thong thing. Still happening here, sad to say). And then there are their counterparts who wear greatcoats throughout summer (mainly Goths and Heavy Metal fans as far as I could tell. The gloomier lot, anyway).
Yes, of course you make sense, as always. That's crap (sorry, I mean wrong, bad, not even something I can relate to to) about the seizure thing, but if you can think in terms of "elan" that has to be good? "Elan" is definitely on the horizon. You and Tracey are such a force of nature!
Denis Wright August 26, 2013 at 2:53 PM
There are certain people who would not accept the assistance of shower chairs and walking frames (to their detriment)...
I was one. All I could think of was old ladies shuffling along. But when you take on board that the alternative is immobility, then you realise that zimmer frame means mobility and independence. I used a rollater thanks to Julie, until it became dangerous for me to be on wheels.
The moment I grasped the frame with its 4 sturdy legs and feet, I knew I'd found a holy grail of sorts. Better than that – freedom. Now after that last seizure, I have to find it again....
I recall that you can't even clean out the wood heater till Labour Day in early October, having lit it on Anzac Day)...
Unwise. Too much chance of a chimney fire. Well, maybe not more than once a year in a good one and good wood, but sometimes, you sure gotta clean out that ash box!
massively overdressed.
Usually no problem with that here!
"Elan" is definitely on the horizon. You and Tracey are such a force of nature!
We use all necessary force, but usually go for the 'work with it' alternative.
Anonymous August 26, 2013 at 10:53 AM
hola Denis, te escribo desde Argentina,he leido las sabias refleciones para poder vivir en positivo con una enfermedad tan cruel como la que tienes.Hace casi 3 meses perdi un amigo muy querido por un cancer de esofago, y la verdad que nos ha dejado mucha enseñanza, al igual que tus palabras...pero a su vez un dolor muy grande, y un vacio que no logramos aceptar.Ojala podamos cumplir estas reflecciones, creo que muchos nos hemos dado cuenta y estamos tratando de cambiar nuestra vida y disfrutarla mas, saborearla mas y deleitarnos con esos momentos unicos y que nos llenan.No he tenido una vida facil, pero no me quejo...el dicho es"hay alguien que esta peor que yo" y eso es seguro, pero la verdad saber que la estas luchando desde diciembre de 2009 es preponderante, ojala tu calidad de vida sea la mejor que puedas tener y que la ciencia y dios te den la pocibilidad de seguir en este mundo, que cada dia esta mas loco, pero que por suerte quedan personas censibles como vos, un fuerte abrazo, y seguire leyendo desde la lejania de mi pais
Denis Wright August 26, 2013 at 3:19 PM
I made my reply a separate posting. Sorry! See below.
Denis Wright August 26, 2013 at 3:16 PM
What a kind but sad letter. Let me translate, roughly.
Hi Denis. I write from Argentina. I read the wise positive reflections you suggest to live with such a cruel disease. It's almost three months since I lost a dear friend to oesophageal cancer, and the truth of that has taught us much, like your words, but bring great pain and emptiness. I hope that we can live up to these reflections and acceptance. I think many of us have taken notice and are trying to change our life and enjoy things more, taste more and delight in those happy moments. We're not unique and we've had an easy life, so I'm not complaining ... the saying is "there is someone who is worse off than me” and that's for sure, but I really understand that you've been fighting since December 2009. Hopefully your quality of life is the best it can be and that science and God give you the possibility of continuing in this world. Every day is crazier, but luckily there are sensible people like you. A big hug, and I will continue reading from the my country far away.
I hope I got most of it right.
My only comment is that it makes it easier when you understand what you are up against. That allows you to know your limits. If you say 'I will go beyond those limits', and you go beyond what you thought were the limits, it simply proves that you didn't know what you were capable of. So go for it, but don't get angry with yourself for failing to achieve the impossible.
Thank you very much.
Denis Wright August 26, 2013 at 3:40 PM
Here's a weak translation into Spanish:
Mi único comentario es que se hace más fácil cuando usted entiende lo que está en contra. Esto le permite saber sus límites. Si dices "voy a ir más allá de los límites", y luego ir más allá de lo que pensaba eran límites, muestra que usted no sabía exactamente lo que era capaz de hacer. Así que ir a por ello, pero no te enojes contigo mismo por no lograr lo imposible.
Thursday, 22 August, 2013. 9.25 AM.
All going to plan, I leave hospital today, five weeks after admission. It will be wonderful to be back at home again, away from the routine [and food!] of the hospital.
I'm writing a little story about my stay for the front side of the blog, and keep simply to medical matters here. Without Avastin since mid-July, it's been a period of calm, with almost no seizures.
This may surprise some, who might reasonably expect things to start going bad fairly quickly. It comes as no surprise to Tracey and me, as we've seen quite turbulent things happening in the first week after Avastin infusion in the past but have noticed a quieter period in the week before the next treatment. We see it as an extension of that time.
This could change quickly and it's not consistent, but a vaguely detectable pattern. It's why we both predicted calm to continue. We know it may be the calm before the storm, so we just see how it goes and are grateful for the quiescence.
In many ways, I feel I am close to recovering the lost ground after the fall I had here two weeks ago. Some things are far from as good as they were at that time, such as the area from right hip to knee and the right hand. In other ways I have made good progress – balance in particular, which is essential to improve walking and manoeuvering.
If the fall hadn't happened, I think there would have been a lot more progress overall, but it did, and we play with the cards as dealt. It's made me more conscious than ever that bathrooms are very dangerous places for people with conditions like mine.
Sunday, 18 August, 2013. 9.25 AM
It's been a more turbulent week than expected, though why should we expect calm? After failing the PTU test and having Avastin postponed until after I pass another one in three weeks' time (which to be frank is not high on the list of expectations), the tumble on Thursday and its aftermath of hand damage and severe bruising from hip to knee, there's a lot of catchup to be done in the coming few days in terms of mobility.
I'm pleased to say the worst of the bruising on the back of the hand and the knee has come out so it should now heal quickly. It's the deep muscular damage to the quads that will take longest. But I feel more positive than I have done since going down.
NOTE:
local friends. This does not mean I am about to kick the bucket! I have
had a period of suspension before. What I need is a very quiet period
of three weeks so that we can do all in our power to achieve the goal of
Avastin resumption at the end of that period.
Visits
from friends, however pleasant, are tiring and stressful for me. This
is directly against my aim of regaining strength to fight the tumour,
which is why I am here in hospital on these recovery programs, sadly,
away from my family.
I'm afraid it's a time when I have to say, "This is about me, and not what you may want."
Saturday, 17 August, 2013. 9.00 AM.
After what I must admit was a very tough day and evening yesterday, I woke feeling that things had improved somewhat. There is less pain down the right side and my ability to grip the frame for walking is stronger. It will be a while before I regain the ground lost – maybe not until after I go home, but I'll be doing my best to get back to that point at least as soon as possible. Seizure activity is very low. I am grateful for that.
Thursday, 15 August, 2013. 4.00 PM.
The nurse said I was inches away from hitting my head on the toilet edge. The consequences of that can only be imagined. What looked like a possible fractured finger was not.
This was in no way the nurse's fault. Apart from some bruises and a goodly collection of carefully patched surface scrapes, I'm good. My biggest loss in the past 24 hours has been gripping strength on the frame and holding implements of various types.
I might be a bit sore tomorrow, but could be much worse.
Tuesday, 13 August, 2013. 9.00 AM.
I'm
sorry for not having posted since Saturday, but reports have been
overtaken by events. Unsurprisingly, the PTU test yielded a bad result
and went significantly over the threshold we agreed upon.
This
means that Avastin will not be given today. It's been discussed with
the Oncologist and my GP. What will happen now is that we will have
another PTU test in three weeks and see if the count comes in under the
limit. If it does, then Avastin will be resumed, and we'll see how it
goes. If it doesn't, then that will probably be the end of the
treatment.
After that, we do no more than we can do and meet with each change as it happens.
If
you're wondering about how we are coping with this, then I assure you
that I am calm and quite together. It's clearly no shock and we knew it
had to happen soon. In some ways I find it considerably less stressful
to get the demon out of his hidey-hole. So have no fears on that score.
Saturday, 10 August, 2013. 8:40 AM
PTU test over, and these are usually the best two, maybe three days of the cycle, because I can eat what I like and not worry. It seems a simple thing but it's not.
I had two fairly strong seizures just after waking yesterday, mainly in fingers and hand generally, but a head and throat seizure about half an hour later was no fun. I called for the nurse, mainly to keep an eye on how it was going while my speech was a bit garbled – not as much as I have had at worst – mostly to be here until I knew it was over.
Later in the night I had minor ones, which is a cue to get to bed.
I am pleased about physio progress. I'm getting a little more joint freedom which help in walking with the frame. Being able to go to the bathroom for everything in my own time is enormously liberating. When it's busy, there's no guarantee a nurse will come within a minute or two, and in certain situations, that can be stressful, because the nurse doesn't know whether you want something minor or need something desperately. [There's no point having separate buttons for this because some people regard every request as an urgent need, while others could be quietly dying of a heart attack.]
I can also pretty much put myself to bed. Again, it is something healthy people take for granted, and although without deep contact with a care-recipient they may feel sympathy, they really don't get it. This I know from 60+ years of being fully healthy. I didn't.
Oh, two other things. I have quite a rash on the left leg in particular, but spreading much further afield. I'm blaming the buildup of Gabapentin in my system, but who knows?
Secondly, I have notable ankle and foot swelling. I have been put in what look like the dreaded hospital stockings, but are a length of tube cut to size which is soft and slightly stretchy, and very comfortable. I see no evidence yet of their doing any good.
Shower lady coming – I want to get this up!
COMMENTS & REPLIES
Bob August 6, 2013 at 9:26 PM
Tuesday August 6th. 9.20pm. Have just read this evening's What's New (and managed to send my first comment into cyberspace - haven't done that for a while). You are incredible, Denis. What a marathon effort. In spite of everything, still observing; still educating; still finding value to pass on to others; still grammatically faultless. You deserve a good night's sleep ... and sweet dreams.
Denis Wright August 8, 2013 at 8:48 PM
Thanks, Bob, but it's a lot easier to be brave with Tracey by my side, whether we're separated by a short distance geographically right now or literally, and family on both sides who'd do anything they can to help. And is goes without saying, friends such as you and Julie. I am going well under the circumstances.
Julie Lake August 8, 2013 at 6:35 PM
Just a small comment - we're still travelling with you as much as we can. And reading every brave post with huge interest. All the love that's possible to send from one human being to another is mine to you this evening.
Denis Wright August 8, 2013 at 8:54 PM
That's beautiful. Though I don't get to say it often, those feelings mean a great deal to me.
In the end possessions mean nothing, if we've got enough to live on. All that matters is people in your life.
Anonymous August 9, 2013 at 9:48 PM
Estimado DENIS: soy el dr. Ariel Crespo de Argentina , medico psicoanalista.
Hace dos años Andrea , el amor de mi vida,tambien medica murio de un CEA de ovarios con metastasis linfatica.
Le habian diagnosticado 6 meses de vida y llego a los 4 años y medio.............sin conocerte ni saber lo que estas pasando trate de que su vida fuera de la mejor calidad posible y con la mayor alegria y disfrute posibles hasta que la llama se apago.
Te deseo lo mejor en tu lucha y aca tenes un nuevo amigo argentino para intercambiar tus sensaciones.
GOOD SHOW!!!!
ARIEL
Denis Wright August 10, 2013 at 7:15 PM
Dear Ariel, I am very sorry about Andrea. I'm sure that you cared for your wife very well until the end. You are right. Quality of life is most important. Thank you for your friendship.
Estimado Ariel, soy mucho lo de Andrea. Estoy seguro de que te preocupabas por tu esposa muy bien hasta el final. Usted tiene razón. La calidad de vida es lo más importante. Gracias por tu amistad.
DenisAnonymous August 10, 2013 at 6:11 PM
Thank you for letting us know and for giving us some insight when the act of doing it causes even more seizures. Your adventurous early childhood has clearly given you great strength of character. Anne P.
Denis Wright August 10, 2013 at 7:26 PM
Dear Anne,
Although this is my personal experience and every case is definitely unique, it may help to recognise symptoms of focal seizure in some who don't even know they have some neural condition and pass it off as nothing significant. It may be the beginning of visible effects of something that needs urgent life-saving or life-prolonging treatment.
Denis.
Anonymous August 11, 2013 at 1:16 AM
Denis: me impacta y emociona a la vez el optimismo que le pones a la situación. Personalmente a mi me da muchisimo miedo estar enfermo. Debo realizarme una video-colonocospia y sin siquiera haberla hecho, me aterran los resultados. Realmente admirable tu voluntad y servicio al compartir tu vida.
Me encantaron las 10 lecciones, me invitan a reflexionar.
Muchas gracias por tu aporte!!!
Siento tristeza y alegria por conocerte amigo
un gran abrazo no puedo despedirme
CLaudio . Argentin
Denis Wright August 14, 2013 at 6:41 PM
The letter reads:
Denis: I am shocked and excited at the same time at how much optimism that you put into the situation. Personally I fear being sick. When I see a colonoscopy video it terrifies me to imagine getting the results. It's really wonderful service you give to show your will and share your life.
I loved the 10 lessons; they invite reflection.
Thank you very much for your contribution!
I feel both sadness and joy to meet you, my friend.
A big hug, but I cannot say goodbye.
Claudio. Argentina
Claudio: many thanks for your letter. I remember fearing death when I was young. It is something to be feared then. When you get older, you respect death but you don't fear it so much. That's why you should do what satisfies you in your life.
It is a beautiful letter. Thank you.
Claudio: muchas gracias por su carta. Recuerdo haber miedo a la muerte cuando era joven. Es algo que hay que temer entonces. Cuando te haces mayor, te respeto, pero la muerte no le temes tanto. Es por eso que usted debe hacer lo que le satisface en su vida.
Es una hermosa carta. Gracias.
Joan August 13, 2013 at 11:51 AM
I'm sorry to read this, Denis. I had hoped you'd hit another plateau, and it seemed to be the case when I read that the physiotherapy had allowed you more personal mobility and you seemed to be settling into a comfortable routine. Perhaps this will continue even without the Avastin for a short while and that you can resume your treatment once your kidneys settle down.
Will you be staying in the hospital while you monitor your response to this change?
I hope for a smooth ride for the next 3 weeks and a resumption of the Avastin.
Stay warm and whatever you do, don't follow this sickening election campaign. It will surely give you seizures. We're now listening to ABC Classical FM and avoiding the cliff fall to the impending disaster on Sept 7. I do have to say here, though, that I wish someone would take Abbott to task on his comment that the notes/information that Kevin Rudd presented on the condition and future of our economy are not worth reading. What has happened to reporting in this country when people can get away with throwaway lines like this without being challenged? I said I wasn't paying attention, but I can't resist a peek now and then.
There, I'll bet that brought on a seizure. It certainly gave me one.
Denis Wright August 14, 2013 at 9:14 PM
I'm blaming my lack of discipline with hospital food for most of the problem, trying and eating things to see what I can get away with.
This isn't an excuse; just an explanation. When I come home next week, we can monitor diet much more strongly.
Yet I also now have the notion, feeling what's going on inside me in the past few days, that this may have come at a good time however much I want to keep on with the Avastin treatment unbroken. I suspect my kidneys have reached the critical point, as indicated by the last PTU test, where the dose of Avastin I was scheduled to have and am missing would have wrecked them entirely.
Perhaps in this game of balancing risk, it really is now time to favour the kidneys for this extended period, hope that 3 years buildup of Avastin can contain the tumour better than we have the right to expect, and see if the next PTU test shows any evidence that a more rigid diet gets me under the limit so Avastin can resume.
In any case two very important things will come out of it; the test of whether diet is a sufficient brake on PTU result or not, and a test of tumour/seizure reaction to an Avastin pause/halt. We need at this point to know this, and being forced to halt makes it easier, in that we have no choice.
This always was a balancing act to produce the optimal outcome. We are in unfamiliar territory – all of us. The result may have real benefit for oncologists forced to play god with every decision they make, to give them something extra on which to make it.
There are no right and wrong decisions – just the chance to see what happens and perhaps make choices based on something concrete.
I, with my Use-By date at least two years well and truly passed, have become a very interesting experiment. It's a bit eerie being on the inside, but while I have intellect, I get the chance to be an observer as well.
It remains to be seen whether or not I return to hospital after seeing how we go at home. I have learned a great deal while I've been here. I came in in a wheelchair at a point where my mobility at home was almost gone. I return with much more. While I have been here, Tracey has completely reshaped living arrangements at home to suit what I now can do [and she and I cannot]. We will have the outside assistance we need.
All this can change in a flash. We never take anything for granted. We never know the next hour brings, but we do know a great deal about probabilities from one day to the next.
As to election capers, all I can say is this – if a sufficient majority of you don't vote my way, then it's in all probability you and not I who must live with the consequences!
Anonymous August 13, 2013 at 12:36 PM
Hello,
I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.
He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.
I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x
Rachel
Denis Wright August 14, 2013 at 9:25 PM
Rachel: you have raised several very, very important issues with this comment, for which I thank you enormously. I hope your father's path from here on is a smooth one. I also support kvd's comment below to the hilt.
I don't have the energy to write now [read my response to Joan above!] but I will definitely return to them, because they are close to my heart.
Anonymous August 13, 2013 at 6:33 PM
What Joan said - except I suspect I'm not so feisty, which is a major failing of mine. Keep on, Denis.
Rachel, your Dad has raised at least one lovely, understanding, child. Not a bad achievement, I think.
kvd
Denis Wright August 20, 2013 at 11:36 AM
Thanks once again and I certainly agree with you about Rachel!
-Thursday, 8 August, 2013. 7.50 PM
I started this entry at 10.30 AM but then had to change the time, as you see. I've had 3 physios this week all attacking my mobility and right arm issues from different angles, and I seem to be responding well. Interestingly, seizures have abated and I can only conclude that the treatment is playing a part. We've found in the past though that I've often had a period of grace of a couple of days before an infusion, so we'll wait and see.
I am right in the middle of the PTU test that will
decide whether or not I'll be given Avastin on Tuesday. In spite of
what we believe to be its rapidly failing power and the rising level of
protein in urine, we hope that I will get it. The kidneys appear to be
holding up well so we feel it's right, but we bear in mind that kidneys
can appear to be going fine and suddenly just stop.
Tuesday, 6 August, 2013. 6.40 PM
Sometime on Sunday evening after I posted last Sunday's roundup, I had a couple of more severe seizures – not the worst I've had, but close. These have been followed up to now by the usual frequent low-level aftershocks.
Seizures are brought on by any little change, like new visitors of any sort, or some slightly stressful event. The effect is directly related to the type and amount of the stress.
Some chemical [adrenalin?] which changes brain activity even to a tiny extent sets them off. It's hair-trigger territory. And strangely, one of the strongest triggers is talking or writing about them. I've had to pay for this couple of sentences by the strongest seizure of the day, but I needed to explain this reaction. It's become an auto-response, which is a pain in the neck, sometimes literally, like now.
No-one is around, so I don't have to speak, but if I did, I may not be able to. I just tried and it's not bad, but then I'm not speaking to another person. As well, the loss of control over the larynx may be delayed, especially if other factors like a new person coming in play their part.
I'm doing this for a clinical description which may help others, bearing in mind that it may be completely irrelevant to another GBM sufferer. It just may help to explain to carers of some patients what a hair-trigger their care-recipient is on if their behaviour seems unexplainable or even a pretence as if to gain sympathy. Just let them sit quietly and don't speak to them unless they want to talk. Take power away from them, and you may prolong the seizures. Don't assume control unless absolutely necessary. Just be around unless they want you to leave.
I'm now starting to feel the seizures settle as I know I'm coming to the end of this description. That was hard work, and slight tremors are the legacy and will be for some time. At times, other portions of my body may act as if I've been startled. Like I'm jumpy. Chemically I am, but deep down only slightly, because of the approaching proteinuria test that decides whether or not I will have Avastin.
The combined effect of them all [I'm talking about before writing this] has been to set me back quite a bit in terms of general weakness, but in particular, weakening my right hand grip on the zimmer frame handle, which is very frustrating because I can't depend on it in the way I could even two weeks ago.
Now Sally has come in, and I'm about to have blood pressure taken. 169/77. Well above my average for the systolic [higher] reading.
I'll talk more about zimmer frames on another occasion and my misunderstanding of them. It's enough of medical things for now.
One last thing. The nurses coming in and out doing their tasks to and for me do not worry me. Their presence and good humour and professionalism are beautiful things to be surrounded by. It's not home and can never be but in this phase when they are needed, it is a reassuring 'second life'.
6.40 PM when I began this. It's now 8.20 PM.
Thurs 25 July, 2013, 4:15 AM.
I'm awake early because I went to bed early, and I did that because I missed my afternoon nap. As a result, from 10 PM onwards I started getting seizures of increasing intensity, so I got sensible, called Nursie, and she helped me through pre-sleep ablutions before putting me to bed.
It's never the same, can never be the same, as Tracey's tucking me in, and I don't expect nor am I offered a good-night kiss here [funny that!], but they are warm and gentle and caring, so it's a comforting substitute.
So, because my body-clock sets itself to blocks of time rather than the sun, I am also awake early, and realise this is a beautiful quiet time to write before the obs, breakfast and bathing frenzy are done.
Having said that, Nursie has just walked in. She's wondering, quite rightly, why I am up. She's got a couple of hours of her shift to go and is looking for something to do, for it's been a quiet night. She'll do obs early and has offered tea, which I'll accept, without the biscuits that are also on offer.
I've put on kilos here since I was admitted last Friday, but that's going to stop. I get breathy while talking, with the extra pressure on my lungs, and my blood pressure is higher than it should be.
Certain things are under my control, and what I shove down my throat is one of them.
Hmm. 150 over 80-something. I can do better than that. I'll definitely have less food and better chosen, now the novelty of hospital cuisine has worn off.
I've done exercises to avoid losing physical strength in my legs. The physiotherapist yesterday helped enormously in guiding me there.
I've also had foot swelling. I thought it was due to the increase in average temperature here compared with at home, because I know it makes a difference, but I also think that experimenting with hospital food is overworking my kidneys, already under increased pressure. That's plain silly, irresponsible tactics on my part.
The first day after Avastin this time around was a good one. I felt energised and in good spirits after some time of being a bit down. It doesn't always work that way. I started having more and stronger but still fairly mild seizures after missing my afternoon sleep, which is why I went to bed early.
Since having Gabapentin there have been no really strong ones that, for example, have made me lose speech. They're just very frequent and mild. I've had at least three since waking.
The magpies are warbling the dawn chorus. Make that six minor seizures.
Tues, 23 July, 2013, 3.30 PM.
Brief entry before sleep.
Through a little goalpost shifting, the oncologist was able to do what we all wanted: to administer the Avastin infusion. It went smoothly.
We now wait to see what the consequences are. It could be 'steady as she goes' or have a number of other effects. We've done what we believe to be the best. I'll keep reporting.
Sun 21 July, 2013. 10.40 PM
I've been so busy with hospital business and sleeping I didn't get round to my weekly roundup. I'm getting into hospital routine, and am feeling relaxed and happy. Tracey is adjusting less easily. I intend to stay here until she learns how to enjoy the break, otherwise there's far less point to it.
I'm here with wonderful professionals and with a terrific room. I'll describe this in the blog and then ease up a bit on blog writing. Hey, I'm here for a holiday too!
Tuesday of course will be a big day. Avastin is scheduled, but we wait to see what will happen. I'm prepared, whatever. I think.
COMMENTS
Anonymous July 15, 2013 at 9:27 PM
Hi Denis,
I spoke of my beautiful mother awhile back from qdi nsw GBM 4 2006-2011..you were wondering about quality of life for those years, apart from constant scans, chemo(temodal capsules) on and off etc the last year of her life her quality of life deteriorated quickly, from losing the ability to walk, talk, eat etc.. Apart from that last year she was fantastic, well as fantastic as you can be as you well know, we raise money every year from a golf day in qdi in her memory, all money goes to the Brain Cancer Foundation, so that one day they will find a cure, im positive they will, its just around the corner! Sending you and your family love, joy and happiness!
Renee
Denis Wright July 17, 2013 at 11:27 AM
Thanks so much for replying, Renee, and the good wishes. I think some sort of legacy like this is healing for family. In my case, it is annual scholarships for Bangladeshi girls to improve their lot on life. Health and happiness!
Anonymous July 17, 2013 at 2:27 PM
HI DENIS:You are brave,you are a figther,your blog help you to face this awful guest,but you help so many people to look life in a different way.My husband had a GBM ,but he didnt have your courage,he had enough time to change familiar matters ,but he didnt,he gave up.I ADMIRE YOU. MARIA SOLEDAD FROM CHILE
Denis Wright July 25, 2013 at 7:01 AM
Hello Maria, it's good to hear from you and I'm sorry it took a long time to reply. As you may know, I'm now in hospital.
I don't know your husband's case history, so I am not really entitled to judge, but I wonder if it is right to expect too much fighting from the patient each time. You may be right and he may have lived longer, but I don't know about his quality of life. By that I mean whether he had to live without access to the medicines that could extend his life at good standard.
I did not change my lifestyle very much. I was blessed with medicine that really helped, and with wonderful care. Without this medicine, I'd have been dead three years ago no matter how hard I fought.
Maria Jose Marroquin Diaz July 18, 2013 at 12:28 PM
Hola Denis!!!
Eres un gran ejemplo...
Soy María José M. D. vivo en el sur de Colombia, soy estudiante, tengo 16 años, estaba haciendo un trabajo, no me encontraba bien, lo cotidiano de cada día entristece el alma y la mía aun joven, rodeada de conflictos, quería escapar de este mundo, pero por casualidad ingrese a tu blog... Y, que sorpresa!!!,
Lo que escribes se convirtió en mi ayuda, ejemplo y me hace saber que no soy la única en esta lucha y que puedo seguir adelante sin desfallecer....
No sabes cuanto te agradezco.
ReplyDelete
Replies
Denis Wright July 25, 2013 at 7:33 AM
Maria: Gracias por tu comentario. Eres joven y vivir en un país que está luchando. Entiendo por qué te sientes deprimido. Si mis ideas que ayudaron, eso es muy bueno. Construir sobre lo bueno.
Ahora tiene la actitud correcta. Esto significa que ahora puede aprender a ser feliz!
Maria: thank you for your comment. You are young and you live in a country that has many difficulties. I understand why you feel depressed. If my ideas helped you, that is very good. Build upon the good things.
You now have the right attitude. This means that you can now learn to be contented!
Anonymous July 21, 2013 at 9:14 AM
Hi Denis
Sorry to hear you are in hospital. I am amazed at how well you put up with this illness, and by your objective account of it's behaviour. It is good that you are able to think - I observed my father, whose life was his ability to think, lose this due to Alzheimer's. When your life is full of thinking, it is awful to have this taken away by some disease. Keep on thinking. best wishes, Liz
Denis Wright July 25, 2013 at 1:55 PM
Liz: don't feel sorry for me being in hospital. I'm being treated very well and it's warm day and night.
Losing the ability to think means that the person you were has slipped away. You've gone from this world. All that's left is a meaningless shell.
Thanks Liz. With this sort of brain tumour, once personality has been severely altered or destroyed, it doesn't and can't come back. Only the body remains, with all its demands and no dignity.
I hope the powers that be have the compassion for the person I am now to allow for the disposal of the 'living' remnants as soon as possible.
The trick for some diseases is to know exactly when that point is.
Julie Lake July 25, 2013 at 8:45 AM
You know Denis, catching up with these latest "from my hospital bed" postings makes me wonder if the medical profession (specifically oncologists and brain tumour specialists - but perhaps most importantly those charged with the care of brain tumour sufferers) wouldn't find your whole "oeuvre" on this subject of interest. I doubt anyone before you has so meticulously documented what it is like to be suffering from this type of tumour. I've learned so much from it and I actually think it has possibilities for a book. Humour and courage in the face of disaster is always inspiring and people like to read about it. I'm glad the nurses are being kind to you - though I, personally, miss the days of crisp candy-strippers and matrons who looked like Hattie Jacques in the Doctor in the House and Carry On films, I do think nurses are rather kinder and warmer today than they used to be. No more terror and that's just the patients!) when Sister stalks the wards!
Julie Lake July 25, 2013 at 8:47 AM
WHOOPS!!!!!! Oh dear, in my last posting I of course meant CANDY STRIPERS!!!! Not "strippers". And I don't have your excuse for bad typing, either! By the way, it's not clear to me why you are in Newcastle and not the Armidale hospital - presumably the latter is limited in its services?
Denis Wright July 25, 2013 at 2:12 PM
Surely we can combine the Candy Strippers with the new nurses! No, I'd be having permanent seizures from over excitement. In fact, they strip me daily. I don't find this at all exciting.
What's not clear to me, my love, is where you got even the faintest hint that I was in Newcastle. How did you manage to get such an odd notion? I am in Armidale, in a wonderful hospital a stone's throw away from our house. [Well OK, you'd have to have a very strong arm, I suppose, but 3.5 minutes away.] Old age creeping up? But the stripper idea does have merit. **Evil grin**
Anonymous July 25, 2013 at 10:29 AM
Julie, your correction has ruined my whole day. And I hope the earlier comment didn't cause Denis to spill his morning tea.
kvd
Denis Wright July 25, 2013 at 2:14 PM
Not half as much as being banished to Newcastle!
Stephanie July 27, 2013 at 1:00 PM
Hi, Denis,
I don't comment much but want you to know that I'm here, in awe as always of your fortitude and the wisdom and insight seen in your posts. I'm glad you seem to be in good hands in the hospital and appreciate and admire the effort that I see going into the posts about what's going on there. Hoping for peace and comfort for you and yours, always!
Stephanie Lancaster - your blogging friend from Memphis, Tennessee (U.S.)
Denis Wright July 30, 2013 at 6:30 AM
Great to see you again, Stephanie, and that you keep in touch. My first real stint in a hospital. Don't you think I'm fortunate to be in such a good one?
Sat 20 July, 2013, 6.50 PM.
Sorry not to have updated earlier but a change of location and regime rather disrupts things. I'm writing a blog posting tonight and talking about it, so more on that to come there. It's been a good experience and probably Tracey's finding it more difficult than I!
So you'll here more from me later - I'll keep my powder dry and brew the story. Seizures have settled more. I think it's the Gabapentin. Any stress brings one on but not serious. Just writing the word then is enough to set off the signals. Other things, very minor, also do. Amazing.
Friday, 19 July, 2013, 3.00 PM.
I have been admitted to the hospital, staff members are friendly and knowledgeable, I have a large, cheery room and an internet connection. That's a big part of the battle. Now, Tracey, don't fret over me - it's all good! I guess I better press this medical call button for the very first time....
Thursday, 18 July, 2013. 1.50 PM.
The seizures were so frequent yesterday that I took Gabapentin, although I would have preferred not to. It means the PTU test under way will be affected, but we had to do something. It seems to have made a difference and although there have been seizures, they haven't been strong, and there are fewer so far.
My right leg and arm have been so affected by the seizures that I can barely support my weight. We had to use the wheelchair for the first time to get me to and from bedroom and lounge.
The doctor will call around tonight.
Wednesday, 17 July, 2013. 9.07 AM
A glorious touch-of-spring morning. Regrettably, my personal seize-mograph is out of tune with the day, as the shocks continue with regularity. The seizure yesterday has had its effect. My head feels like it was put in a vise with stiff muscles all over, and the throat as if I'm developing a huge throat infection [which I'm not, it just feels like it].
Much more sinister is the fact that the diarrhoea that seems to have been growing in the past week has developed more into dysentery or cholera. This is very inconvenient for someone with a condition like mine, given the difficulties of walking and dealing with simple hygiene, and night-time management.
We are interpreting this as the clearest sign yet that the kidneys are failing seriously. I begin a 24 hour proteinurea test tomorrow and will be surprised if it stays within the non-critical range. We see the Oncologist the same day, before the scheduled Avastin - Tuesday.
In short, I am expecting "suspension", which almost certainly means "ending" of the treatment. We've lived with the Devil and now we face the Deep Blue Sea. After all this time, I think the waters look more inviting, but we have some awareness of the rocks and shoals under that surface.
Brain function in other respects is slowing dramatically. I sit and take minutes to compose what took seconds before. Typing with one hand is bad and letters and words don't come out in the right order after typing. Please expect limited, delayed, or no response to emails even though they are read and appreciated. I've received extraordinary letters in past weeks that have as yet gone unacknowledged. If you were one of those who wrote and are reading this, my apologies.
I started this just after 9 AM. It's now 10.20 AM. That's how long it took to write it.
Tuesday, 16 July, 2013. 3:10 PM.
All was going reasonably well till about 10:30 AM today, when I got hit with the most severe seizure since the very first on 3 December 2009. I won't say much about it because just recalling it has set off the tremors and signs of another, but this one took control of my neck and head entirely, with strong twitches and uncontrollable movements of eyes, ears, mouth. Strangely I still had some ability to speak. It lasted a long time, and left me weak and achey in those muscles unused to this sort of thing.
I went to bed immediately and slept somewhat fitfully [hah! That adverbial pun was unintended.]
I am feeling shaken up I admit, but am crawling back into recovery mode. If I don't get a recurrence too soon I will feel better but there's no guarantee of that or that worse isn't to follow. One week till scheduled Avastin. It could be a rough one and the PTU test may be affected. Let's dispense with the illusions.
Sunday 14 July, 2013. 10.00 AM.
Allons, enfants! On Bastille Day. Who would have thought it? I feel quite good today. Well, neither better nor worse, which is OK. Most of what I would say in a weekly roundup I said in Wednesday's posting, so no point in repetition. The usual mild seizures start the day the moment I move physically, a little more leg weakness than this time last week... that's pretty much it.
Having indulged a bit yesterday and a few days before, I'll perhaps be stronger for the next five days with low protein and see if it keeps the count under control. Salad days! Psychologically a bit of indulgence is uplifting. Let no-one tell you any different.
Wednesday, 10 July, 2013. 10:30 AM.
Yesterday was a bit of a rough day, with constant seizures for most of the waking time. These decrease what's left of usability of arm and leg, create nausea and general discomfort. I did not turn far enough on my side when I slept, which meant waking with a coughing fit from seepage of fluid to the lungs. This has happened before but so far on each occasion the coughing has dislodged the fluid completely, as far as I can tell. The lungs seem clear.
The moral is, make sure I'm well and truly on my side when I go to sleep.
There does seem to be something of a perceptible pattern to the three-weekly cycle. There's a period of instability with stronger seizures, followed by headaches - usually one long headache centred in the tumour area but more general, followed by multiple [usually] smaller seizures that are more constant and affecting a wider body area, and then a quieter one that may end with more seizures just before Avastin treatment day.
My take on this is that there's a period of growth of the tumour, producing the headache and greater inflammation of the brain, and a period of "settling" punctured by aftershocks. In some ways it's quite reminiscent of the sequence of events around an earthquake [one which in my case, happens once every three weeks].
The great unknown now is how much good the Avastin is really doing, weighed against its damage. There will be only one way we'll get an idea.
Sunday, 7 July, 2013. 9.35 AM.
After the immediate post-Avastin incident, the remainder of the week has passed quietly enough – minor seizures that would register as regular 90-120 minute jags on a personal seismograph ['seizmograph?'] – now more in the upper arm and thoracic area than the fingers, and general weakening afterwards.
Therein lies the effect. Now, in order to stand without the left hand on or very near something secure, I have to widen my stance, for a measure of stability. Then, if the standing activity is something I need to concentrate on, like pouring a glass of water, I find that my knees are gradually buckling and I must tell myself consciously to stand up!
In other words, I am rapidly losing the ability to weight-bear – to support my own bodyweight. This I try to counter as much as possible, but it is a losing battle. It's not the physical strength of the legs; it's the restriction of brain signals. But without using the legs, physical [muscular] deterioration follows.
Even my skin, especially that on my hands, now looks like what a snake sheds and is paper-thin. This is an Avastin side-effect. It means I have to be very careful not to bump it. For vanity's sake, it's good that my face skin seems the last to go, but as my sleep becomes more erratic, I have no doubt that I'm starting to look very weary.
That's because I am. Sometimes sitting in my chair, I am cloaked in a sudden fog of it. Then I sleep very easily.
I went back over the last six months of entries into this diary. What is startling to me is the exponential speed with which all this is now happening, and the extent of effects.
Very little is painful. It is inconvenient and daily adds to the tasks Tracey has to perform to enable me to retain comfort. There are so many things I could do in January that are now impossible for me to do, or to do with any degree of safety. I could detail them here, but I won't.
Wednesday, 3 July 2013. 12.50 PM
Things have settled to what we would describe as fairly normal in the last couple of weeks; a few seizures per day especially when I do anything physical, be it turning on the lamp after sleeping, standing up, or walking to the lounge. Thereafter they happen at random intervals [and when I mention them!]
I have recovered speech almost fully. As long as I have peace and quiet, things go along OK.
Tuesday, 2 July, 2013 9.30 PM. ***UPDATE***
I had a sleep and woke a bit shaky. I came out, using the walker as usual, and went to speak to Tracey but could not. Just incomprehensible sounds. I was standing frozen to the spot, and had no idea I couldn't speak when I opened my mouth. I don't know when the speech failure started because I had no reason to speak for the 15 mins or so after I woke up.
Tracey got the wheelchair and we were able to manoeuvre me into it. After some time I was able to stand and to get into the electric armchair where I am now.
Essentially I am back to what has become "normal" for me. No, there is no point in going to the hospital. I would simply be observed. If there are any further incidents, there is nothing they can do. I would in any case prefer to be here unless I become totally immobilised, and at the moment I am as mobile as I have become over recent weeks.
This is not the first time I have had strong post-Avastin reactions, mainly with strong seizures before. This was of the type that made a specific attack. Again, it is not the first time but bigger.
We'll see if things stabilise.
Tuesday, 2 July, 2013 2.22 PM.
Home again from Oncology.
Avastin was administered. The protein in urine reading was a hair's breadth away from the point where it was mandatory for local staff to consult with the specialist oncologist [based in Sydney]. I really expected it to be stable at the lower reading of 3 weeks ago. It's significantly higher. This in spite of our best efforts, even more rigorous than ever before, to contain protein excretion.
The future is looking even more uncertain than it has been.
We have a chance at another three weeks to ponder this. I say "a chance" because we can never say with certainly we have that long to do so.
Comments to 6 July
Anonymous July 1, 2013 at 7:33 PM
I do not know what to say but I wish you luck
Denis Wright July 7, 2013 at 11:01 AM
Those are the right words!
Anonymous July 1, 2013 at 7:42 PM
Animo friend! ... thanks for the lesson of LIFE that we are giving to all. Go ahead and do not jump ship ever. I recommend you see the website of PREM RAWAT (Words of Peace Global), I'm sure you will love and will help you very much, helped me why I recommend it: wopg.org
Denis Wright July 2, 2013 at 5:08 PM
Thank you for good wishes. Frankly, I find the comment "do not jump ship ever" problematic. I want the right to decide if and when I might decide to jump ship when quality of life is unacceptable. Who would not?
Anonymous July 1, 2013 at 8:23 PM
Soy un enfermo terminal. Sufro neoplasia del cardias con metástasis al hígado. No se cuanto tiempo viviré, me solidarizo contigo vivo en el País Vasco en un pueblo cerca de Bilbao. Estoy leyendo tu blog con placer y curiosidad. Un abrazo solidario desde Euskadi.
Mary Dice Algo July 2, 2013 at 5:14 AM
Ánimo para ti también. Un abrazo desde Valencia. Lucha hasta el final y nunca te rindas.
Denis Wright July 2, 2013 at 4:34 PM
I understand and appreciate your comment. There is certainly a time for fighting, but there is also a time for a peaceful death with dignity.
Entiendo y aprecio tu comentario. Sin duda hay un tiempo para la lucha, pero también hay un tiempo para una muerte en paz con dignidad.
Denis Wright July 2, 2013 at 4:45 PM
"I am terminally ill. Cardia neoplasia suffer with liver metastases. Do not know how long I will live, I sympathize with you live in the Basque Country in a town near Bilbao. I'm reading your blog with pleasure and curiosity. A supportive hug from Euskadi."
I'm very sorry indeed to read of your illness. It is very difficult to live with such uncertainty and my wish for you is a good quality of life for as long as possible and a short, peaceful and comfortable death when the time comes.
Claudia Andrea July 2, 2013 at 9:47 AM
A propósito de abrir la mente...aqui dejo un link que puede ayudar en el difícil tratamiento de los tumores cerebrales. http://www.pbhrfindia.org/index.php/publications-and-presentations/scientific-papers-published
Saludos.
Denis Wright July 2, 2013 at 4:26 PM
Thank you for that. Unfortunately, our experience and investigations over three years indicate that homoeopathic treatments have no positive effect on GBM tumors.
Gracias por eso. Por desgracia, nuestra experiencia y las investigaciones más de tres años indican que los tratamientos homeopáticos no tienen ningún efecto positivo en los tumores GBM.
Claudia Andrea July 2, 2013 at 11:52 PM
Dennis, I have used this treatment in patients with GBM and other astrocytomas with variable results, but always including the partial or total regression of the tumor and associated diseases, such as hydrocephalus, etc. I know how frustrating it is to treat GBM. I am a neurosurgeon. A big hug, Claudia
Denis Wright July 4, 2013 at 9:37 PM
Claudia: you've hit on some really important points; in particular, that one size doesn't fit all. The variables are huge, and different outcomes are inevitable.
chrispydog July 2, 2013 at 5:40 PM
G'day Denis, I notice you're still pumping it out, inspiring everyone with your wisdom and calm in the face of certainty; you are a legend.
I'm just coming up for 5yrs clear of my little neck cancer now, so dodged the bullet as they say.
When it really is my turn, I hope to muster some of the strength and grace you've amply given, and that I too can pass some of it on to others.
Cheers,
Chris
Denis Wright July 4, 2013 at 9:43 PM
Ah, good friend – you've been through the fire and snow and deserve to be entirely clear from here on. Than you for the good wishes.
Anonymous July 2, 2013 at 7:45 PM
que ejemplo de fortaleza, que gran leccion nos da con sus vivencias!!!saludos
Denis Wright July 4, 2013 at 9:55 PM
Everyone has that strength. They just need to know where to find it. Points 2 and 3!
Todo el mundo tiene esa fuerza, sólo tienen que saber dónde encontrarlo. Los puntos 2 y 3!
Míguel Ángel July 2, 2013 at 8:39 PM
Thanks for this fantastic blog.
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Denis Wright July 7, 2013 at 11:06 AM
Thank you. Forgive me if I do not go to your site but I can't be sure it's not a virus. What is your site about?
Mellamodolor July 2, 2013 at 10:35 PM
I come to discover your blog and your history. I wanna send you all my possitive energy for keeping you strong as long as you can. There was 2 years ago and 2 days that my mom went away loving life and teaching us a lot about living life loving each single moment, each and everyday. Doctors found a GBM (4) tree months before.
We both are teachers and we worked everyday about they language and reading diseases. She lost it (and tha's because I suspect that something were wrong before going checking it) and we arrive to recover it just doing some daily exercices. I'm spanish and my english isn't the best one, but you have all my support here. No doubt about contact with me. Biiiig huuuuug lolybustos@gmail.com
Denis Wright July 7, 2013 at 11:14 AM
I regret that your mother's illness was so short. I hope her death was as peaceful as possible. Many thanks for your good wishes and support.
Julie Lake July 3, 2013 at 4:09 PM
As always,even on hols, reading your posts. Just wanted you to know we are still travelling with you.
Denis Wright July 7, 2013 at 11:30 AM
Thanks Julie. I know I can always rely on you and Bob for backup!
Casilla de Siniestros July 4, 2013 at 4:18 AM
It seems incredible that a person who is going through this situation live life with so much joy. I send a big hug and a lot of strength for the rest of the way.
Adrian, Buenos Aires, Argentina ..
Denis Wright July 7, 2013 at 11:33 AM
Thank you! Comments from friends from across the world make me feel good.
Anonymous July 4, 2013 at 7:33 AM
Great to know about you in today argentine newspaper (Clarin).
I´m just arriving home with my husband, who had his Avastin session today. Fortunately, he´s also enjoying life, and so am I. Please, keep on that way !!! best regards. Herminia Chabagno, Rosario city, Argentina.
Denis Wright July 9, 2013 at 12:28 AM
How long has he been on Avastin? My very best wishes to you both.
Maelgi July 4, 2013 at 1:44 PM
Hello Denis, te he encontrado en el diario de mi país, creo que tu tienes un Angel , que te recuperaras en corto plazo. las energías positivas curan , tu tienes mucha... Un gran abrazo de Arco iris.!!!!!
Denis Wright July 7, 2013 at 11:44 AM
Hello, Maelgi. En el corto plazo, sí. Apreciamos la alegría que viene todos los días.
Andrea Terzano July 5, 2013 at 12:16 AM
Denis...Acabo de leer el articulo que te hicieron sobre tu lección de vida... y entré al blog !!! Perdí a mi papá hace poco por un mieloma multiple... pero tambien ví partir gente por otras cosas.... o por accidentes... Haber atravesado con mi papá el camino de la enfermedad nos llevó a un lugar de aprendizaje que nunca hubiera conocido... nos hicimos amigos del cancer, de ese "bicho" que tanto nos enseño...
Tu claridad y mensaje me llegan al corazón porque me llevan a esos dias en que nuestra filosofia de vida empezó a cambiar !!! TE DESEO BUENA VIDA !!!! solo eso !!!! Abrazo fraterno desde Buenos Aires - Argentina !!!
denis saludos desde san luis argentina y ,no te des por vencido aun vencido.abrazos , jorge
Anonymous July 5, 2013 at 7:42 AM
Las Farmacéuticas: Pillos pero no Tontos
Tanto saben las farmacéuticas que el bicarbonato de sodio aplicado a los tumores acaba por desaparecerlos rápidamente, que muchos de los tratamientos de quimioterapia incluyen actualmente el bicarbonato de sodio, con el pretexto de que “ayuda” a proteger los riñones, el corazón y el sistema nervioso del paciente. Y ha sido ya determinado que el administrar quimioterapia sin el bicarbonato puede matar al paciente ahí mismo.
Así, cuando escuchamos ahora los “éxitos” de la quimioterapia -sobre todo con reportajes en televisión y cable de celebridades curándose milagrosamente-, lo que no se nos informa es que es precisamente el bicarbonato de sodio el que está actuando, no sólo para detener las metástasis y curar el cáncer, sino también para disminuir al mínimo los nocivos efectos secundarios de los temibles venenos tóxicos de la quimioterapia.
El Dr. Sircus así lo asegura. “No existe estudio alguno que separe los efectos del bicarbonato de sodio de los agentes tóxicos de la quimioterapia… ni los habrá…”dice resignadamente el doctor.
El Factor Emocional
Desde hace tiempo se sabe que la angustia o ansiedad extremas -pérdida del ser amado, fracaso en las metas fijadas, dilemas existenciales, traumas morales o emocionales, etc.- pueden desencadenar toda una serie de males físicos -migrañas, hipertensión, baja del sistema inmunológico, etc.-, llegando hasta el cáncer. Y esto es lógico: Si no hubiera una baja en el sistema inmunológico, sea esta repentina o crónica, no hubiera manera en que los hongos, que según estudios recientes citados en el video que pusimos arriba son los que causan el cáncer, pudiera proliferar al grado de poner en riesgo la vida.
¿Cómo revertir el proceso?
Yendo al origen del problema: Simultáneamente a la aplicación por sonda directamente sobre el o los tumores, se recomienda una dieta rica en vitamina B17, que se encuentra sobre todo en semillas, almendras, pepitas de papaya o de sandía, etc.-
Y ten caridad de tu prójimo… comparte esta asombrosa información con aquellos que sepas que tienen cáncer…
nestorluis@bermatov.com
Denis Wright July 7, 2013 at 12:36 PM
Gracias. El bicarbonato de sodio es bueno para el malestar estomacal. Tengo amigos que son los investigadores médicos. Les aseguro que ellos sabrían si el bicarbonato de sodio podría curar este tipo de cáncer, y que mis amigos no lo ignore. Si sólo fuera así de simple. No creo que lo es. ¿Dónde están los resultados de las pruebas adecuadas?
In English:
Thank you. Baking soda is good for an upset stomach. I have friends who are medical researchers. I assure you that they would know if baking soda could cure this cancer, and that my friends would not ignore it. If only it were that simple. I do not think it is. Where are the results of appropriate tests?
Anonymous July 5, 2013 at 10:35 PM
Denis, I'm form Argentina and recently i've read an articule about you and I felt inspired by you. I want to thank you for your advices mencioned in the articule publised and for your blog. I'll pray for you. Regards, Gustavo.
Denis Wright July 7, 2013 at 3:33 PM
I receive all blessings with gratitude. Thank you, Gustavo.
Yo recibo todas las bendiciones de gratitud. Gracias, Gustavo.
Omar Gonzalez July 7, 2013 at 7:22 PM
Denis, I´m from Veracruz,Mexico
No se mucho ingles , pero quiero que sepas que no estas solo en este mundo afortunademente tienes muchos seguidores en este blog, tienes toda la razon de vivir el momento y aprovechar todo y perdonar.
yo espero que exista un milagro para curarte amigo, fuerza y paz!
Denis Wright July 14, 2013 at 10:06 PM
Thank you very much for your good wishes, Omar.
wanderer July 8, 2013 at 12:57 AM
Hi Denis,
I found your blog through news.com.au - thank you for your writings. My dad was diagnosed with GBM in September 2011 and after a period where he was written off by the medical profession, we're (somehow) currently still going.
I was wondering if you'd ever stumbled across any research on using a ketogenic diet as a complementary treatment protocol? I've been seeing a lot more research lately on this and I was very surprised that so has been done to date in this area.
I'm not sure if this is helpful but the results seem fairly impressive (for an experimental study) http://www.sciencedaily.com/releases/2012/12/121204112610.htm
All the best from us (from Perth)
Gavin
Denis Wright July 14, 2013 at 10:30 PM
Many thanks for the advice, Kevin. We are putting most of principles of that diet into practice as a complement to current treatment, and there are compromises involved when other organs are critically involved.
Right now the coin is on its edge. Things are likely to change within a very short time. We are constantly reviewing things to keep treatment optimised.
Veronica Lorenzo July 8, 2013 at 9:30 PM
Hello Denis! I´m from Argentina ( sorry for my English if it isn´t so good!) and i admired your strength . My sister lives in Honolulu, Hawaii and she has metastatic breast cancer , she is 49 years old . Our family is devastated for this situation but giving her the best of us. For me, my sister and you are heroes, the battle is not easy but God has the last word! The best for you and your family, a big huge from Buenos Aires!!! :)
Denis Wright July 14, 2013 at 11:44 PM
I thank you for your good wishes and it tears my heart out to know what your sister, you and your family are going through. I can only hope for the best possible outcome for her.
Ros July 9, 2013 at 12:07 AM
Thank you for telling us how it is for you, Denis. I know the effort for you to do so is not really understood by us, your readers. It is hard to hear and to read - but I would rather know, than to not know what is true and real. Thank you.
Denis Wright July 14, 2013 at 11:56 PM
It has to be straight down the line or it loses value, doesn't it? So I try to be as objective about what's happening as I can be, even if I don't always succeed. But maybe too clinical's not the best anyway.
marcela figueroa July 10, 2013 at 4:18 AM
Gracias por lo que haces, he estado dos veces junto apersonas muy queridas con cáncer y me ha sido muy doloroso perderles, se que en algún momento emprenderás el viaje que todos realizaremos algún día , pero mi fe en Dios me dice que estarás muy bien y que quizás quiso que nos ayudaras a muchas personas que a veces necesitamos ejemplos como tu para seguir viviendo,gracias por darnos fortaleza, un abrazo y un es un gusto conocerte
Denis Wright July 15, 2013 at 12:00 AM
Thanks for the good wishes. We all deal with life-and-death matters in a way that suits us best.
María July 14, 2013 at 10:09 AM
Hi Denis, i`m from a city of Argentina....i wish you have a good day . To day i learned that my boss have a pancreatic cancer....but i think all the people have a common Destiny....THE DEATH....and is better be will friend with she....sorry my english is so so....Regards and kiss from my heart
ReplyDelete
Replies
Denis Wright July 15, 2013 at 12:12 AM
I understand what you mean. I would say it like this. We must face our fears. It is the best way. Thank you very much.
Entiendo lo que quieres decir. Yo diría que es así. Debemos enfrentar nuestros miedos. Es la mejor manera. Muchas gracias.
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Hola Denis
ReplyDeleteCuanto lamento no haber encontrado este blog antes para pasarselo a mi papi y que pudiera compartir contigo su húesped no invitado. Papá era un ser muy especial, un guerrero de la vida. El 15 de junio de 2012 fue operado de un tumor cerebral, glioblastoma grado3-4 con radioterapia y temozolomida iba saliendo, en realidad con sus ganas de seguir vivo trató y lo hizo seguir una vida normal, haciendo lo que le gustaba: caminando a pesar de su cansancio y tener vida social. Fallecio el 11 de junio de 2013 de un infarto intestinal que no tuvo mucho que ver con esta enfermedad a la que le tenemos tanto miedo. Gracias por descubrirte a través de la lectura de un locutor de mi ciudad Mar del Plata en la radio sobre tú blog y tus consejos . Mil besos y mucha fuerza. La vida es bella y debe ser vivida hasta el último instante. Extraño tanto a papá ya tengo 46 años, el tenía 72 pero era un hombre joven por su personalidad. Pero sólo se nos adelantó. Sandra desde Mar del Plata Argentina
Thank you, Sandra. Sorry to read of the death of your father. Death often occurs in these cases because of unrelated diseases. Sometimes it is better to die because of one of these other diseases and not by the brain tumor itself. You're right about enjoying life until the last moment. What really matters is the quality of life.
ReplyDeleteGracias, Sandra. Lo siento a leer de la muerte de su padre. La muerte suele ocurrir en estos casos debido a enfermedades no relacionadas. A veces es mejor morir a causa de una de estas otras enfermedades y no por el propio tumor cerebral. Tienes razón en disfrutar de la vida hasta el último momento. Lo que realmente importa es la calidad de vida.
Thank you Mr. Wright, for sharing your journey with us. In Dec., 2010, my 61-year old sister-in-law was diagnosed with gbm level 4. After the initial surgery, radiation, and chemo, 15 months ago she was put on Avastin, every 2 weeks. We were wondering whether you have been on Avastin alone or in combination with any other chemotherapy drug. Our family's best wishes go out to you.
ReplyDeleteEvery case is different but she followed my path except hers are 2 weekly and mine 3. For the first couple of treatments it was monthly in conjunction with chemotherapy. The chemotherapy was obviously failing so that's when we went to just 3weekly and that’s how it's been for nearly 3 years. If you've been following the current WHAT'S NEW! then you'll see the drug is losing its effect – rapidly now, as far as we can see.
Delete[NOTE] I'm copying this to the current WHAT'S NEW! as I believe it will be of general interest and not everyone goes to these older versions.