... in my brain actually. My very own brain tumour

Tuesday, April 29, 2008

Another convulsion

OnThursday 24 April I had another convulsion- this time lating 3 hours. It just didn't ever seem to stop. Tody i m still sore all over from it. I ended up in hospital siting in a horrible wet, cold smelly pool of urine being offered lunch at the end of it all. The poblem was that the nurses put the lunch at the foot of the bed so I couldn't get to it. They didn't answer he bell when I rang. There were no utensils for eating it so when I eventually managed to get the tray close enouh to me to eat, I had to scoop the food into my mouth with my urine saturted hands. I have vowed never o go back to the Vincent pallotti hopitl again. I would rather die first, and i mean that literally. My brain is getting worse every day and sems to be disintrgaing now. i am not in contrpol any more. For me it is hoible feeling.

Monday, April 21, 2008

I hate having convultions / fits / seizures

Yesterday (Sunday) Joan and I went to Kirstenbosch and slowly walked the Braille Trail. This is a tiny little walk with a little uphill section. We loved it and I found it exciting to be back on uneven, slightly rocky ground for about 20 minutes. It gave me hope that I could eventually get back to normality some time.

In the evening I noticed the telltale signs of an approaching seizure - a strange taste in my mouth, tingling in my teeth and mouth on the left, uncontrolled blinking of my left eye, clonic twitching of my left hand and left arm. It got worse and worse. I was fully conscious all the time and just had to try to relax as poor Joan watched me twitching away, out of control, trying to restrain my flailing left arm. It is an awful feeling. This morning I had yet another exactly similar experience. I hate it. The neurologist who is also part of the medical team has now put the dose of my anticonvulsant pills up slightly and warned that I may now start experiencing tremors. Everything seems to be balanced on a knife edge. Too little drug and I have seizures, too much and I can get tremours. Well, lets see wht happens now.

Today I was exhausted and did just about nothing. I hope tomorrow is better. What I would do without Joan I don't know. Thank you or you love, attention and support dear Joan.

Friday, April 18, 2008

Visit to the neurosurgeon

This morning I visited the neurosurgeon for my first post operative consultation. As previously mentioned, he is aware that I want to be kept fully in the picture without anything being held back or glossed over. I need information about my condition in order to help manage it and give myself the best chance. He obliged with kindness, honesty and empathy. The rest of the day I have felt rather flat. Not depressed or fearful, but emotional and tearful. I suppose what he told me caused a lot of truths to re-surface and put me back in touch with the reality of my position.

Firstly, he told me that I am looking in good physical shape. I agree. Apart from some patchy hair loss, I look fine superficially. I told him that I am desperately tired permanently and that I have rather serious weakness in my legs mainly. This he confirmed, is normal, and is caused largely by the treatment. It will improve with time, but probably not to my original level of fitness as a mountain climber.

He reminded me that I have a "terrible" tumour in my brain. That is not nice to hear, but if that is the case I need to know. The radiotherapy and chemotherapy regime I have been receiving is a relatively new approach to this kind of tumour, having been administered at the same time rather than serially. That is fine. I am being guided by highly skilled professionals, and follow their advice. But, as I have kept saying, it has knocked the hell out of me.

He asked about my intellectual functioning and I told him that it has regressed. I think slowly and often become confused and emotional. I feel that I make poor decisions as a result. Again, he emphasised that the radiation and chemotherapy are extremely serious forms of treatment and that they have multiple effects not only on the tumour, but also on a wide range of other brain structures and other systemic parts of the body. The problem is that without treatment the prognosis for this type of tumour becomes very bad and can be reduced by many months. So, I believe that I have made the right decision by going ahead. Lots of aspects of my life are fine. I can enjoy music, eating (!) friends, the sun on my skin, the sound of birds in the morning. A little walk every now and then is nice - perhaps round the block at home or even around the Rondebosch Common if I am feeling really good. I am not saying these things to make anyone sorry for me. These are joys and I want to enjoy them.

He told me thatI am probably at my worst now. The Oncologist also said this recently. Any improvement will take a long time - perhaps up to about 6 to 9 months. He kept emphasising how seriously the treatment hs affected everything. At this point there is no real point in having another scan to look at the tumour. It has probably not changed in size yet. A further scan may be called for in about 6 months time. Any further treatment with chemotherapy (and that is a definite possibility) will be at much higher doses and may have the effect of holding the size of the tumour where it is, but will be unlikely to shrink it. Hmmm. It does seem to be a nasty thing. I will remain positive and not give up though. I have a part to play too. The things that I need and want to do to smoothly transfer my knowledge of the program sold to SEDA will be done by me very responsibly but at all times with my health in mind. They understand that fully anyway. I am an impatient person in this kind of matter, but I will try my best to relax and just do the very best I can without (literally) killing myself in the process.

Wednesday, April 16, 2008

Very short update

This is a very short update for the reason that my typing is still difficult and time consuming. My brain has still not mapped the computer keyboard properly and there seems to be lack of coordination causing the problem. It is very frustrating. Every now and then I try to play something on the piano, but realise that that is something that will only return as a result of a miracle.

I finished my formal radiotherapy and chemotherapy on Friday 11th April. Only now do I realise the level of assault that this involved to my brain. I can already start to feel things slowly getting better - with the emphasis on SLOWLY. I rest a lot, and that helps. My brain is still swollen and irritable from the treatment and will continue being treated with drugs (that dreadful cortisone and anticonvulsion stuff) until the swelling eventually goes down. The irritability of the brain tissue shows itself in behaviour that Joan and I have sometimes called "meltdown". These are horrible incidents when the slightest little thing sends me into an inappropriately emotional state.

Again, I say thank you to my friends and family for supporting me. To those who have asked if they could visit and were told that I have been sleeping or resting, please accept my aplogies. If you were told this it means you were among my very best friends indeed. Sometimes the level of exhaustion was such that it was impossible to see everyone. I know you will understand. Since my last entry another of our hiking friends actually died of cancer without even making it through her treatment. The reason is that her support system was very limited (in my opinion). So I am deeply indebted to all of you for holding me up so effectively.

On Friday this week I see the neurosurgeon again. Nobody has yet suggested having another look inside my head to see whether the tumour has gone down or not. Basically we all agree that that won't serve any purpose. I want to see how my actual function as a human being goes now. I need to stop eating so much and slowly get myself fit again. Life still needs to be lived.

Sunday, April 6, 2008

Why so quiet?

Why has there been so little from me in my blog lately? The simple answer is that I am now so utterly tired and weak that it is too much effort to keep many things going properly anymore. Sorry. I am trying to rest more and it is helping. I just wish I had had the opportunity to rest more during the whole SEDA saga of getting my computer program sold to them. The massive stress of dealing with the sale has undoubtedly affected my treatment adversely. So please be patient with me. My teatment is still not finished. I have a way to go still. I still get the odd minor seizures from time to time but they are well controlled with drugs and don't make me panic anymore.

Joan is so strong and is holding things together miraculously but I am not completely insensitive and unobsevant. She is taking huge strain and is also showing signs of exhaustion and strain. We are having a hard time. Both my sons, Ian and Michael are extremely caring and supportive. I am blessed with all this, as well as friends, so it is not as if I don't have a support structure. I have a very good one. The blog has been extremely useful for me as personal therapy, but it will probably go through a quiet period for some time till I get my strength back. OK?

Thursday, April 3, 2008

SEDA - satifactory conclusion at last

Yesterday two senior officials from SEDA flew down from Pretoria with all the documentation necessary to conclude the sale of my financial product, The Critical Planning Exercise, to them. Although this happened after the cut-off date of 31st March 2008, I have accepted the position in good faith. During the meeting, which was conducted in an atmosphere of understanding and mature compromise, I gave them the assurance that all details would remain private and confidential so that is as much as I am going to say on this blog.

In the meantime I have had the odd minor seizure but these are under far better control now that I am full of drugs.