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

Saturday, March 29, 2008

Lots of things went wrong!


Since writing my last diary entry (that I haven't even finished yet) a whole lot of things have gone wrong. That's life, I suppose. And I have to deal with it just as you do and everyone else does. Anyway, here is my perspective from the point of view of someone facing the problems of a brain tumour that WILL take my life sooner or later. I hope it will be later. I really do. But I am also in the middle of treatment and that is overlaying my responses to problems in ways I didn't expect. So, here goes.

Firstly, over the Easter weekend, we somehow forgot to collect the chemotherapy pills from the hospital pharmacy and only realised the problem after the pharmacy at the hospital was closed. So I got through the entire Easter weekend without chemotherapy, wondering how it would affect me. We contacted the oncologist who said I must not get too uptight about it, and that we would sort out things later, after the Easter weekend. After the weekend, my full blood count showed that my platelets (responsible for clotting of blood) were low. This happens quite often with radiotherapy and chemotherapy. It turns out that the chemotherapy would have been temporarily stopped anyway for a short period. So no damage was done

Because of the long weekend over Easter, I had to have two doses of radiotherapy on one day just before the weekend. The whole exercise made me very tired indeed. I have seldom experienced that level of profound tiredness before.

The X-ray machine that delivers the therapy to me will be out of operation for 3 days next week for servcicing, so I will get double doses of radiotherapy on a planned basis in the future for a while. I am not looking forward to it. At this stage, I only have 7 treatment doses left. That is GOOD news!

During this period, SEDA, the organisation that is buying my business, kept hounding me for extremely urgent information within an almost impossible timeframe. I would go to bed late, get up at 2 or 3 in the morning and prepare the information they needed so urgently in order to meet a deadline of 25 March 2008. It was a hard, hard time, but I managed to comply with every single requirement they put to me without any exceptions. Eventually, a day or two before the deadline set by SEDA, I asked them when on the 25th they would be flying down to see me to sign the documents as previously arranged on their terms. To my astonishment, it quickly became obvious that they had made unilateral changes to the agreement that they had demanded from me in such urgency right at the height of my treatment, they had failed to keep me up to date with changes, and they had generally dealt with the whole matter with spectacular lack of competence. They had let me down in so many ways that it was unacceptable to me. My oncologist has said that this kind of stress is highly damaging to my health and I need to make a choice between getting a little bit of extra money from SEDA or taking my treatment seriously. I have now made my decision. I want to live as long as possible and have a good quality of life with Joan.

I have told SEDA that they have let me down very severely indeed, especially as they have known about my health problem all along. They also know that I have complied with all their requests, and they have complied with only some of their own requests without letting me know. Basically I have told them that I have withdrawn my offer to sell my program to them. If they continue using the software in their possession after the end of this month, they will be committing fraud. So I will be living a little longer, I will have less money to live on than I thought, but so what?

Tuesday, March 25, 2008

Strategies for getting quick emotional control


Arising from the hot cross bun incident in the previous diary entry in my diary, it is clear that I need a way of getting quick emotional control when necessary. The emphasis is on "quick". The hot cross bun incident is in many ways trivial and unusual because it was caused largely by the emotional lability induced by my treatment. This should be an important learning experience for me because its scale was not large and I don't think any damage was done beyond breaking a plate. Quite how much it upset my dear little granddaughter I don't know, but I think I have set that right and she seems sto have forgiven me. I have already gone through an exercise of redefining many of my beliefs. That was a huge exercise for me and one which was very vauable, but it did not give me the tools I need to get quick emotional control.

Here is what I have done to achieve that objective. It is based on good old Pavlovian conditioned reflexes as far as I can see. Firstly, I have defined 7 things that give me trouble in my daily operations with the real world. They are
  1. Being confidently resourceful in approaching and solving immdeiate problems
  2. Being fearlessly decisive in making good decisions quickly
  3. Having the ability to relax quickly in a stressful situation
  4. Needing a quick, positive boost of energy to overcome an immediate problem
  5. Surrounding myself with good protection from personal abuse quickly
  6. Abiliy to be flexible in a stressful real time situation quickly
  7. Ability to shrink my personal problems to realistic proportions quickly and immediately.
The hot cross bun incident was caused by my losing control of items 1,2,3,6 and 7. This detailed analysis of a trivial incident may sound ridiculous to many people, but I want to get the technique right on a trivial incident before I apply it to more complex incidents.

To have a detailed look at how he techniques work go to the Practical Exercises page of this blog or click here.

An update on my condition and treatment:

I have about another 2 weeks of radiotherapy and chemotherapy before we assess what next to do about the tumour in my head. We are slowly reducing the dose of steroids that accompanies treatment and this makes me really happy. The reason is that the steroids have caused a proximal weakness in my limbs. This means that I am as weak as a baby. I have to lift my legs with my hands to get them into a car, and I am always the last up a flight of steps. It isn't fun at all. I haven't had any indication that I may get convultions again. My taste is slowly coming back. My typing is improving. I still can't play the piano, but think that I may get a measure of that ability back. I now have a rather moth eaten, patchy hair loss on the right of my head. That doesn't bother me in the slightest of course. Once the formal course of treatment is over, it seems that I have an option to go for a further course of treatment during which I have no therapy for a month, after which they give me a potent single treatment for one day. Thereafter there is a possibility of a further single treatment after a further single month without treatment. Then, if all goes well, we wait and see what happens. Statistics seem to show that anaplastic astrocytomas such as mine recur but do not spread outside the brain. I am going to hang in there and get back to a life as close to normal as possible. Life is fun and I want to participate. The treatment I am getting, is, according to my oncologist, palliative. Cure or complete remission is not the objective at this stage, but the pallitive process may take me through for many happy years. A search of the internet also shows that research is continuing all the time. Who knows? Maybe a breakthrough will be found. I am still totally accepting of the whole process. So if anyone is feeling sorry and miserable on my behalf, please stop right now. Be positive with me and help me.

Wednesday, March 19, 2008

My disgraceful, childish behaviour


This is another of those diary entries that is very personal and that you can skip if you like. But the whole purpose of my blog is to give me nowhere to hide so that I can root out my demons, confront them and repair them. So, if you want to read on, please go ahead with my full blessing.

On 18 March an incident occurred that should have been so trivial that it should not have caused the slightest disruption in my life. As it turned out, it shook me to the core and made me realise that I am just not coping as a normal, rational adult man of 62. This is what happened: My darling, innocent little grandchildren came to visit unexpectedly. What a lovely surpise to have the house filled with beaming smiles, exuberant fun and happiness. Just before they arrived I had buttered a hot cross bun and was munching away on it. I offered my little 4- year old granddaughter a bite of one corner. A little later, when there was one little piece left, I popped it in my mouth to finish it off. My granddaughter's face crumpled into a frown, tears welled up into her beautiful eyes and she started crying. I felt a strong emotion of self-hatred well up inside me and was unable to control myself. I took the plate on which the bun had been placed, and threw it angrily and childishly on the hard paved path (I was sitting outside at the time). It shattered spectacularly into a hundred pieces. Basically, I lost my composure completely and felt that my ability to cope with life had gone. What an awful experience for a little girl to have to witness. Later in the day when trying to book tickets to attend the Friends of the College of Music concert at the Baxter Theatre, I became confused and unable to cope with simple questions being asked of me. I withdrew from the situation with a horrible sense of failure that I know so well. My wife, Joan, who has spent her working life planning radiotherapy treatment for patients at a large hospital, has explained that much of what is happening is also due to the treatment I am undergoing.

The inside of my brain is being fried by high energy X-rays in the region of the tumour but the entire brain is also receiving an overall dose of these potent X-rays. The consequent exhaustion surrounding the logistics of receiving daily treatment is also not helping and when my dear little granddaughter behaved in an unexpected way, I couldn't handle it. My brain is not normal right now. Another thing that has become obvious is that the tumour is growing. At some stage after I have seen he neurosurgeon, I will show you MRI pictures of the brain that demonstrate a nasty hole appearing at the centre of the cancer as brain tissue is slowly destroyed.

What is going on here? I know exactly what happened, and I am going to fix it. In the page of this blog called "Practical Exercises" I carefully set out a plan to help me overcome my problems with my beliefs. Because I have been so euphoric with the initial results of carrying out the plan, and because of all the pressures surrounding me, I have simply ignored some aspects of the plan. There are aspects of the plan set out in the page on Practical Exercises that are still under construction. I know about them and they will appear later. Essentially they go beyond knowing about my beliefs and help me to get immediate access to controls that will stop the kinds of disgraceful behavious I have highlighted in this personal diary note.

I have all the psychological tools available to me to help me and I must simply use them. They are very powerful techniques and I will share them with you soon. So the solution is to get back to the plan and get myself back on track! It will not be dificult.

Tuesday, March 18, 2008

Joan's birthday



The 17th of March is St Patrick's day. But far more importantly, it is the birthday of my wife, Joan. So, what does one do if one has a tumour in one's brain and one wants to buy a present and perhaps arrange a small party? Well, in our case I just sat back and did nothing, such is the quality, love and support of our friends. Doreen just volunteered to take over and things happened. A small group of friends went to the Tokai Forest yesterday where we had it all to ourselves. We had a peaceful, happy time and Joan managed to blow out the 6 candles on the cake. Thanks Doreen. A lovely arrangement of roses arrived from our friends in Australia (how do they get roses to travel down a telephone line??) This was accompanied by a really fine bottle of KWV bubbly that Joan will open at a later date. She phoned Australia to say thanks but got the calculation wrong and woke poor Nicky up at 1:00 odd Ozzie time. Sorry! Piles of other pressents arrived from lots of other friends of Joan's. She is a much loved person.


I will give a further update on my cancer after I have seen the neuosurgeon and will enclose the latest MRI pictures then. But right now it is Joan who must stay at the centre of attention. We will get through this thing together. Unfortunately I must admit to becoming angry, not with the bad luck of the cancer itself, but with the frustrations of not being able to do the things I could in the past.





Saturday, March 15, 2008

Update on my condition

It is time to blog again. One of the reasons for the long silence has been my physical inability to type. Joan has offered to do typing for me and has actually done some, apart from her hugely increased workload. But the thoughts just don't flow properly if I am not doing the work myself. So here we go. I have settled into the daily treatment of radiotherapy - which is making me progressively tired as time goes by, I am told that this will get worse before it gets better. The chemotherapy is basically a way of administering a poison that will kill the cancer cells without doing too much other damage at the same time. The whole assault on my system is quite severe and is causing my poor old brain to swell up, especially after the daily radiotherapy. This has to be controlled with large doses of cortisone which has some horrible side effects of its own. Everyone asks if the steroids (cortisone) are causing me to put on muscle like an illegal athlete. Alas, no! No matter how much I flex my muscles hopefully in front of the bathroom mirror, the only thing I see is a serious wasting of my muscles. And I am getting weaker as time goes by. There have been no more seizures. Thank goodness for that! Seizures are awful.

I have been attending to business matters regarding the selling of my business to SEDA, all under extreme pressure, at the worst possible time to give everything my full attention. More of that later. In the process, it is inevitable that I have had to put in extra hours in order to meet the demands and deadlines of SEDA. So I am tired, tired, tired. I will admit that I try to remain positive but don't always succeed, especially at home, where Joan has provided me with a "soft place to fall." She has seen me at my very worst, angry, disappointed, weakend, intensely self absorbed and has had to listen to me roar and shout with frustratuion from time to time. She is wonderful. She is taking huge, huge strain but is bearing up strongly. I am lucky indeed.

I still can't play he piano or do up the buttons on my shirt ptoperly. A hundred small things frustrate me, like constantly dropping things and occasionally losing all sensation and control of the inside of my mouth. But life continues to be overwhelmingly wonderful despite all these little things. Last night Joan and I were on the roster for Pub duty at the Mountain Club and seriously thought of cancelling. But we went along and did the duty all the sqme. Jeff Goy presented two movies he made of recent trips to Cambodia and Germany. They were excellent and we were glad that we went along. It also served to remind us how lucky we are to be part of a group of supportive people who love nature, mountins and exercise. Everything is good. I will be up there in the mountains again before too long. Just wait!

Sunday, March 9, 2008

Reality after setback

If you have been reading my blog perceptively, you will have picked up the fact loud and clear that my sudden encounter with my brain tumour has brought me starkly into contact with reality. I have been trying to understand reality at a number of levels, and one of the things I have come to accept is that each of us has a different reality, defined by many things, including our beliefs systems.

I want to share an insight that dawned on me today. Believe it or not, my blog is occasionally being read be someone I know at the South African Astronomical Observatory in Sutherland in the Karoo. One of the facilities at the SAAO is called SALT - the Southern African Large Telescope. It is the biggest optical telescope in the Southern hemishere, with a primary mirror fully 10 metres across. This is a major international project and one of which we in South Africa can be proud. I have been privileged to have been sent photographic images taken by one of the professional people working there, Janus, Brink. These pictures illustrate clearly to me how we all see things differently. Just take a look at these stunning images of the sky.






























Some people may look up at the sky at night and see nothing through the filthy haze of city fumes and light pollution. They give it no further thought. In their reality, the night sky does not even exist. Other people may see the full moon and briefly think, “That’s nice”, then go on with their lives. Still others may even look at the full Milky Way on a cold, dark night in the country and be moved briefly by its beauty. Then there are the Janus Brinks of this world who see something more, and meticulously work out a plan to capture what they see. The point I want to make is simply this. Each of us has our own unique sets of beliefs. It is these beliefs that motivate our behaviour and accomplishments. It is these beliefs that construct the unique reality in which each of us lives. I think that these pictures are a particularly striking example of the power of beliefs to yield unusual and special kinds of behaviour with correspondingly unusual and special results. Janus, you have inspired me to look at reality in a different way. Thank you for letting me have a glimpse of your reality. It has enriched me.

Thursday, March 6, 2008

Setback

On the way to my treatment on 28th Feb, I noticed a strange sensation in my left hand, mouth and face. My left hand & arm started twitching convulsively. Of course, I knew what this meant. I was starting to have a seizure. Joan got me to the hospital in double quick time and I was admitted to the ward immediately and put on intravenous anti-convulsants called Epilim [ very expensive ]. I was surprised at how long it took for the seizure to be brought under control. It was a most unpleasant experience both for me and Joan to observe. After getting through the night, I was stabilised. During the night I was amazed to wake up, finding myself being assaulted, punched and slapped in the face. Completely at a loss to understand how a hospital could be run this way. Next day when I spoke to the neurologist, he explained that this was a classic case of alien hand syndrome. Eventually I was discharged on 4th March and am now at home going for treatment daily. Treatment is fine but I am very tired and my left hand is unable to type, so Joan is doing the typing for me. Lets leave it there for the time being. Thanks for all your support. I am blessed with the best friends.