... in my brain actually. My very own brain tumour
Tuesday, February 26, 2008
The radiotherapy started at 2:00pm yesterday. Apart from the fact that the mask was still incredibly tight and painful, everything went fine. I complained like a stuck pig about the painful mask and the radiographers adjusted it by making a small cut in a strategic place. It is now bearable. Good. I tried relaxing my shoulders (thanks for the tip Diane). I also took an ativan 20 minutes before hand to help relax me, and used lots of imagination to fool myself that I was actually lying in a farm dam in the Cederberg. The radiotherapy yesterday lasted about 1 hour, but a lot of checking x-rays had to be taken to verify that the position of the tumour was correct in relation to the beams. I am being treated with two beams of high energy X-rays, one from behind my head and the other from the right side of my head. The fields are activated one after the other for about 2 minutes each. In future each radiotherapy session should last about 15 minutes. Subjectively I feel nothing when the beams are switched on, but the tumour, I am told, doen't like it. Good.
You will notice that I have added a new page of practical exercises to my blog at the top right of the screen. This is because I have become so excited by the successes I have had in reconstructing my beliefs, that I wanted to share my techniques with anyone who may want to read them. They both require a bit of thinking and hard work, but I hope they will be as useful to other people as they were to me. So, have a look and decide if you need them. More things will be added to the new practical page from time to time.
Finally, to all my dear, supportive friends, thank you for keeping me on track with your loving support, your good wishes, your emails, phone calls and prayers. You are doing a wonderful job for your old friend John. I appreciate it so much. I am going to beat this thing in my head and go on for a long time. Just wait and see.
Saturday, February 23, 2008
Well, here we are. A new image! This morning I had a number 1 haircut from my son, Ian. It took about 2 minutes and I am quite happy with it. No brushing needed. When I start my treatment on Monday, I have been told not to wash my hair for 6 weeks. So it made sense to get it as short as possible. Oh, and I can expect "patchy hair loss" as the chemotharapy starts doing its work. What do you think? Hmm. I think I might just disobey instructions and give the old head a very gentle wash in tepid water from time to time. I can't see myself being able to handle no washing at all. I am already disobeying instructions by driving occasionally on quiet roads. Whatever happens I will be sensible.
I start first thing in the morning on Monday with my first dose of Temodal - the trade name for the cytotoxic drug I will be using. The chemical name is Temozolomide, and it seems to be the standard chemotherapy agent for Anaplastic Astrocytomas. I kick off with 14o mg per day, preceded by a rather expensive anti-nausea tablet called Zamanon. I have managed to get the dose of corisone (betanoid) down to 3 tablets per day (I was originally on 18 per day!). But, as the radiotherapy starts causing inflammation and swelling of my brain I will probably have to increase the dose. Lets wait and see. The people at the Vincent Pallotti Hospital are all very competent and pleasant. I'm sure things will go well. I am scheduled to have radiotherapy and Chemotherapy together every day for 5 days per week for 6 weeks. Hopefully that will give my astrocytoma a serious hint that it is not welcome and must please go away.
In the meantime I have been hard at work designing a new page for my blog. I hope to get it up and running in the next few days. It is all about the practical plan I followed to restructure my beliefs. The plan worked so spectacularly well for me that I want to offer it to anyone who wants to read it. If I can help even one person to have the same amazing experience that I had, I will be happy. So watch this space.
Wednesday, February 20, 2008
The last place on earth I thought we would go was to the Taalmonument just outside Paarl. But that's where we started. It is an impressive place, and they serve a great breakfast too! Here are some pictures. Those without credits were taken by me.
Breakfast at the Taalmonument. John, Joan, Doreen. Picture by Mike.
John and Joan at the Taalmonument. Picture by Mike.
We saw an interesting flower there that the gardener called a "bergroos". I'm not sure what it is but will try to find out. Here it is:
Then we climbed up to the top of one of the massive granite Paarl rocks and had a look over the surrounding vineyards. We live in a beautiful country! Correction! We drove up as high as we could go, then doddled up a few metres to the top. I could get used to this kind of mountaineering quickly.
Joan, John and Doreen. Picture by Mike. Paarl lies below the Paarl rock. Scones and cream beckon. We cave in and succumb to the temptation . . .
Next, we drove down to the town of Paarl. Mike spotted a farm just outside the town called St Pieters Roche with a young lady sitting outside under a sun umbrella, selling grapes. A sign told us that teas were served under the trees until 4:00pm. This sounded good, because we had not eaten a single thing for almost 3 hours since our massive breakfast. So we had tea:
Doreen, John and Joan waiting for scones and cream. Picture by Mike.
Here we are - Me, Mike, Doreen. Joan took the picture.
Here is a picture of our table before the tea, scones, jam, and cream arrived
And here is the jam!
What an utterly decadent, lovely day we had. Thank you for spoiling me rotten. Life is good!
Tuesday, February 19, 2008
Over the weekend, I found another blog by a man called Ian in Switzerland who also has a brain tumour and seems to have gone through many similar experiences to mine, particularly with regard to beliefs. I found it really interesting reading his blog. If you want to do so please click here to see it.
Sunday, February 17, 2008
I'm John with a very old brain,
Now I constantly sing this refrain:
My brain has a tumour
With no sense of humour,
But I'm happy in spite of the pain!
I like to measure things and keep track of the numbers. When I noticed that my personality was undergoing a miraculous change for the better after working through my dysfuntional beliefs on learning about my tumour, I decided to get an objective measurement of where my personality is right now. So, I visited a web site that deals with the Five Factor Model of Personality. If you click the highlighted text above, you will be taken to a long, scholarly article that describes what this model is all about. Essentially it explains how you can take a test in which you answer 300 questions and are then provided with a detailed analysis of your personality in which you get scores out of 100 for 5 categories, namely,
Openness to experience
I know that there are many opinions about the validity of personality tests, but I am not trying to be a deeply scholarly person. I just want a quick and objective way of looking at myself in a mirror with reasonable accuracy. By the way, answering 300 questions is not particularly quick, so if you want to do the test yourself, please click on the highlighted text, take it seriously and be totally honest! You can also take the test by looking in the links to other sites in the sidebar on the right of the screen. Anyway, after doing the test, it gave me a printout that I intuitively thought sounded accurate.
Wouldn't it be nice if I had done such a test shortly before learning about my brain tumour? Well, here is a bit of magic. For some reason, I actually did the test in December 2007, before I had any idea I was going to get bad news about my health soon. The reason I did the test in December was to have an objective look at myself in the mirror because I was suffering from my usual old problems of depression, shame, fear of failure etc and nothing I did was helping. I find this synchronicity amazing.
The net result is that I have two sets of figures to compare. Here they are:
Results of test in December 2007 and Feb 2008, with scores for 2007 on left and 2008 on right
Extraversion.............. ....11.......... 81
Gregariousness........... ....1.......... 53
Activity Level............ ...80.......... 69
Openness to experience
Openness to experience.81.......... 95
Artistic Interests............86.......... 78
So what does all this mean to me? I find it enormously encouraging and positive. It confirms strongly what I feel. If you want to know what some of the terms mean, I am going to leave it to you to visit the site and read about terms like immoderation, morality, etc.
The results tell me that the most dramatic effect has taken place in the area of neuroticism, where I originally showed quite gross dysfunction. Now I am actually better than average. I can confirm this, as my depression has totally left me. The score for depression has dropped from 93 to 4. This is a huge gift to me and I accept it greedily. I am experiencing reality accurately and feeling new emotions like joy, lightness, confidence and happiness.
Next, the area of agreeableness has jumped from a very uncomlimentary level way below average, to a new score that is well above average. Again, I can confirm this. Strangers now smile at me and say hello (maybe they are amused by my new hairstyle, hey?). This is something new. I feel full of fun, happy, confident, and aware that I am a more pleasant person to be with, less grumpy and moody. Something fundamental has changed here.
Next is the area of Extraversion, where the pathetic original scores have jumped through the ceiling. Gregariousness from 1 to 53. Friendliness from 5 to 82. Cheerfulness from 8 to 96. I find this astonishing, but I know it is true.
Next comes Openness to experience, which has not changed much, except for adventurousness which jumped from 30 to 81.
Finally, conscientiousness has stayed pretty much the same. I am happy with this because part of my belief systems support conscientiousness. It is interesting to see that my cautiousness has declined. Good!
Here are other things that I have measured:
- My weight was 84 Kg on 14 January. It is today 77Kg. This loss of 7 Kg in one month concerns me, but I think it is a side effect of the huge doses of Cortisone (Betanoid) that I am taking to control the brain swelling .
- There is clear evidence of muscle wasting, especially in the large muscles of my legs. I think this is also caused by the cortisone.
- I have managed to reduce the cortisone pills from 18 per day to 3 per day without evidence of pressure symptoms from my brain. I fear that this will have to go up when the radiotherapy starts causing inflammation in my brain after the 25th Feb. I will deal with it when the time comes.
- Definite muscular weakness has developed. When I go to gym, I have noticed a 30% reduction in my muscular strength. I think this is also an effect of the cortisone. Horrible drug!
- My ability to play the piano has improved. Where I was unable to play the simple Bach prelude No 1 on 14 January, I have started re-training myself using scales and finger exercises as well as sight reading. I am now working on a complete sonata by Mozart, K V 330 in C major, and it is going well. This is encouraging and joyful news for me.
Friday, February 15, 2008
On 13 Feb I arrived at the Oncology unit at
The mask was made after first asking me to lie on my back on a hard (cold!) metal table. A very hot sheet of plastic with tiny holes all over it was then placed on my face and molded into shape over the facial contours. Eventually it set and became a hard, snugly fitting mask. I now think of it as an istrument of torture . . .
Next I had to have a set of MRI images taken, with the mask on. The procedure took about half an hour. I can safely say that it was the most unpleasant half hour of my life. Try to imagine what I went through. Lying on my back, ready to be inserted into the narrow tunnel of the MRI machine, the radiographer applied the mask to my face. It was cold and now fitted very tightly indeed. There was a small opening for me to breathe through, but there were no openings for my eyes, so I could only see vague shapes through the transclucent platstic right in front of my eyeballs. Each time I blinked I could feel my eyelashes brushing against the mask. Next, my head was put on a hard headrest consisting of two sharp plastic prongs that bit into the back of my head. Finally, the mask was strapped firmly to the table. My head was now totally restrained and painful pressure points immediately became evident on the bony ridges of both eyebrows where the mask pressed on them. It was impossible to move any part of my immobilized head even a fraction of a millimeter. I do not suffer from claustrophobia, but in this instance I certainly did. It was awful. After being pushed into the narrow tunnel deep inside the MRI machine, it started humming, rumbling, vibrating and generally doing the sort of fearsome things that MRI machines do. All the time the pain from the prongs behind and the pressure points in front of my face got progressively worse. It took all my resolve to lie still, strapped in this dreadful facial straight-jacket. I kept having to fight panic which was steadily building up inside me and threatening to make me scramble out of the tunnel. Two sessions of 7 minutes each passed like a month, at the end of which I hoped to be released.
No such luck. I had to have an injection of magnetic dye and then have another 5 minute session in the machine. I asked desperately if I could not take a break for just a few minutes, but no, I couldn’t. Those five minutes went on forever. How I managed to control my panic I will never know, but I somehow did. Next, I had a CT Scan, also with the restraining mask strapping me to the metal bed. When I finished the experience, the relief was overwhelming, but I was close to tears when I met Joan in the waiting room. What a ghasly experience. Apparently they got marvellous pictures, so it was worth it.
The radiotherapy will start after they have planned the fields, and chemotherapy will commence at the same time. The planned date for the start of the actual treatment is now Monday 25 Feb. It will take place every day, Monday to Friday for 6 weeks. I hope some magic thing happens to the mask to make it more comfortable.
Wednesday, February 13, 2008
In my last diary entry, I talked about constructing a routine that would help me stay focused on reality. I have done so and will share it with you later. While putting the plan together, I was aware that this is not the first time I have tried to do so. All previous attempts failed. Why will my present attempt succeed? I will come to that in a moment, but it is essentially because I have now made a decision to be open and share my plans publicly.
Why is it that I have been trying to fix myself for my whole life? Well, it is because something went wrong very early in my childhood that laid down beliefs that have sabotaged all my behaviour ever since. Unfortunately, I have only understood and changed those beliefs now after 62 years, as a result of being jolted into action by my brain tumour, that strange gift. Here is a brief summary of my life. I have filtered the information to keep it short, and relevant only to those aspects that laid down my unhealthy beliefs. Many positive, good things have happened in my life, but my purpose now is to identify, as best I can, only the things that created my long-held, dysfunctional beliefs.
My childhood was an unhappy time. I remember my father, Dick, as a most wonderful playmate and source of fun and happiness. He could tell stories like nobody else in the world - stories that were filled with irony and humour. They were stories that laughed at people with a deep, visceral belly-laugh. They were stories that were filled with earthy reality that made a child's eyes open wide with anticipation and glee. My father was also naturally and passionately musical although he did not play any musical instrument. But he could whistle. And whistle he did - wherever he went - sometimes to the chagrin of us children. He would walk down the road, through the shops, catch a bus, loudly whistling Beethoven's 6th Symphony. That was one of his favourites - the "Pastoral". It is one of my favourites to this day. When I say he whistled the 6th Symphony, that is exactly what I mean; all four movements, including exposition, development, repeats, everything. When he came to the end, he would go on to the 9th Symphony, or just start the 6th again. If interrupted he would swear a good, irreverent oath, laugh out loud, deal with the interruption, then carry on where he had stopped. He would spend hours playing games of immense imagination with us children, always spicing them with a pungent sense of the ridiculous. He understood Monty Python, before Monty Python was created. Oh how I loved my father.
There was one boring, practical problem. He was so utterly unconventional and intolerant of authority that he was unable to hold down a job. He sneered at his bosses and could not conceal his contempt if they were stupid. All his life he spent without a career and only contributed minimally to the family income. The responsibility of attending to the practical needs of the family (with 4 children, of whom I was the eldest) fell on the unwilling shoulders of my mother.
My mother was a beautiful and highly intelligent woman with a Masters degree in Science and various other post graduate qualifications. She was the rock on which the family was built. She had to wrench herself away from her tiny children every morning to catch the bus to the Government Matallurgical Laboratory in Johannesburg where she reluctently worked. We children were left at home where my father whistled and played his fantastic games with us.
As I grew older, I realised that he was not like other fathers, all of whom went dutifully and respectably off to work. So I started developing a feeling of shame for him that I kept to myself. When he occasionally found a job, he would often be away for months at a time. We were then left in the care of a nanny , or with Ouma, who didn't like children. I remember being locked in the coal cellar for what seemed like hours by that old woman, for some childish indiscretion. I was terrified of her.
To this day, I cry when I read letters written by my mother at this time. She was filled with despair and anger at my father for his inability to provide for the family. She describes her feelings of failure and guilt at having to leave the care of the children to other people. She had a hard, hard time. She was admirable and strong. She was practical, and resolute, and made sure things did not disintegrate. She also became bitter and critical and exhusted as time went on. Oh how I missed her and longed for her as a child.
These terrible circumstances set the stage for the daily dramas that acted themselves out in our poverty stricken, empty, echoing house. Daily there would be the fights. Not physical fights. Worse. They were fights between my beloved father and beloved mother, in which they would tear each others' characters apart loudly and viciously, all in front of the children. It was like a verbal bloodbath, where no aspect of their characters was safe or sacred. There was loud shouting and screaming, there were stony terrifying silences, sighings, crying, wailing. No aspect of either of their characters was safe from ridicule, sarcastic side-swipes and aggressive disrespect. It all happened openly and loudly in front of the children.
I still remember as a child lying curled up in a ball in the corner of my room listening to the daily noise of my parents fighting. I remember feeling small, insecure, impotent and guilty. They were always fighting about the children and whose responsibility the children were. My guilt grew as it can only do in the uncomprehending mind of a child. It became unbearable for me to know that everything was my fault. That is genuinely what I believed. The whole ghastly, aggressive mess that surrounded my beloved parents was cause by me. What could I do to fix it? How could I improve myself? What was wrong with me? Why were all other children good, and I was bad? I would wrestle with these things every minute of the day and night, but I was only a child. I didn't have the resources to deal with adult problems because I was only a child. But I tried. I learned that if a job needed to be done, I just had to do it, no matter how unpleasant. I learned how to force myself to do things that I often hated. My efforts must have been pathetic, but I did my best. I regarded myself as the man of the house as far back as I can remember.
I took on adult responsibilities very early, especially when my father was away in Lichtenberg or Mafeking for months at a time. I remember two incidents with particular horror. One was very simple. The cat had kittens. We had no money to feed them. So, being the man of the house, although only 7 years old at the time, my mother asked me to drown them. Men sometimes need to do things even if it upsets them. I filled a bucket with water and drowned the kittens one by one. I was surprised at how strong they were as they struggled until they died. I hated it and will never forget it. But, sometimes men just have do carry out orders whether they like it or not. Men are responsible and strong. Despite my role as man of the house I remember crying for days and being consumed with horror and grief at what I had done. I secretly performed a solitary religious ceremony and buried the tiny wet bundles of dead fur at the back of the garden under a bush. The other incident, also when I was about 7, involved being woken one night by my mother who told me there was a burglar on the roof. "John, you must go out and shoot him", she said in a loud whisper. With that, she put a heavy, cold pistol into my hand. I can still feel the size and coldness of the handgrip and being amazaed at how heavy it was. I knew what I had to do. As my mother, younger brother and little twin sisters cowered in a group on the stoep, I went out into the freezing, moonlit highveld night with my firearm to protect the family. Surveying the roof carefully for the burglar I was about to kill, all I saw was a cat. Thank goodness. I had been let off the hook and would not have to kill that night. If it had been a burglar and not a cat, there is no shadow of doubt in my mind that I would have carried out my instructions. These are some of the childish traumas that haunt me to this very day.
Is it any wonder that I developed a system of beliefs during these years that were not healthy? Let me try to list some of those beliefs, remembering that they were formulated by the mind of an immature child:
- I am a supremely responsible person who will protect and provide, no matter what. I force myself to be responsible, even though I don’t know how. I hate it.
- I am not important. It is my actions that are important. I must provide, no matter what. Whatever happens to me in the process is unimportant.
- I must stay in control, no matter what. I cannot trust other people. They always let me down.
- I fail all the time. Despite my need to be responsible and strong, I do not have the personal strength of character to succeed. I am therefore a shameful failure. But I will keep trying, knowing that I will continue to fail.
- My father is a bad person, irresponsible and weak. I must therefore take a vow (I remember using that word as a young child) to live my life being unlike him. I reject everything about him, his playfulness, fun, story telling. I must show loyalty towards my poor mother who I will always protect. That loyalty will be shown by rejecting my father and despising him.
- Everything is my fault. I will take responsibility for everything that happens in the world. I will deal with it myself, because I can't trust other people.
- I will not share my problems with other people. My problems are my responsibility, not theirs. I am alone. No one else cares, so I must make things work.
- Avoid confrontation at all costs. Just don’t go there, ever.
- I have a very strong commitment to time. Things need to be done immediately to avoid them piling up and overwhelming my personal resources. I am terrified of having so much to do that I can’t cope. I must use every available second of time efficiently and effectively in order to stay in control. I am massively afraid of failing to get everything done on time and must avoid such a situation at all costs.
All these beliefs have been reconstructed in the Beliefs Page of this website in such a way that they now conform to reality and are healthy and adaptive and helpful. Click here to go to the beliefs page to see the reconstruction.
These are very distorted and extreme beliefs. They are typical of the thinking of a small child, especially one who was, essentially, abused and missed out on the carefree experience of being a child. My beliefs were pathetic and unrealistic. They were certainly not designed to help me effectively through adult life. The net result of trying to live life according to these childish guidelines has been the ever-present fear of failure. It is not a rational, adult fear. It is the uncontrolled, quaking fear of a frightened child with lions that live under the bed at night. That's where my fear comes from. These beliefs have never been properly examined and reformulated by me till now. What a pity. I forgave my parents a long time ago. Who knows what drove them to behave the way they did? Who knows what their belief systems looked like?
As my life progressed, my determination and strong beliefs seemed to be working, even if they caused pain and fear, so they became more deeply ingrained. After passing matric as Head Boy of my school, I decided to study medicine and embarked on the 6 year course with an uncompromising and inflexible determination to succeed. I found it very stressful, especially when, in my 4th an 5th clinical years I learned to examine patients intimately, deliverd 40 babies, worked in the casualty department, and was introduced to psychiatry as one of my subjects. I started to get a glimmering of what was going on inside my mind, but I resisted changing any of my plans or beliefs. Why change things if they are apparently working, even at a superficial level? Then the depressions started - deep, black, hopeless depressions that overwhelmed me with despair. I tried, with cleched fists, to snap out of them, but couldn't. I had lost control.What a failure! What a disaster! I couldn't study effectively during my 5th year. I remember going off to Medical School and spending days just walking the corridors of the hospital to look busy. How could I, such a failure, go and examine patients? So I walked and walked until my feet were saw.
At this time I was married to my amazingly wonderful, loyal wife, who has stuck with me all my life through some of the steepest hills and deepest valleys anyone can imagine. What an amazing, loving and admirable person she is. She supported us during the study years. The similarity of our situation to that of my parents was not lost on me, and made me very anxious and ashamed. But we always loved and respected each other, and never fought as my parents did. I failed my 5th year because of my ongoing depressions. What a failure. It devastated and filled me with a gnawing shame. After repeating the 5th year, a further major depression developed which I was unable to control, and had to be hospitalised after a suicide attempt. I then made the momentous decision, after 6 hard years of study, to give up medicine and I joined the bank as a junior clerk. The time had come to provide. I had to do it, and do it hard. Still depressed and filled with failure and shame, I applied myself to my banking career and became a manager very quickly. Everything seemed to have sorted itself out, but of course it hadn't because I still clung to those childish beliefs that were motivating my behaviour from fear. The awful reality of recurring depression has always been with me from those days until the present. It has now disappeared like a miracle.
All my younger siblings have died. My brother hanged himself in a police holding cell after trying to hold up a bank with a toy gun. One sister was struck by lightening, dying in Lesotho instantly, My last sister died in London of a widely disseminated cancer many years ago. Is my turn coming up soon? It seems cruel in the extreme that, just at the brink of my decision to retire and enjoy life, this damned tumour has presented me with a serious challenge. Am I angry? You bet I am. But I have already defined and accepted the belief that life is not intrinsically fair. So I will forgive my personal outburst and let it go. I will fight the damned thing with everything I've got, but whatever happens will be fine. I will accept it calmly and without fear. I really mean that. I am not trying to be brave or inspired. I feel the acceptance and it feels good.
As our children grew up, they experienced a father who was inflexible, controlling and full of extreme opinions about resposibility. Oh, my boys, please forgive me. I know that there was also fun, and love and there were good times. But I ask your forgiveness for some of the hardness, coldness and distance that you experiened from your old dad. You have both turned out to be spectacularly wonderful people. I admire you both beyond belief. There is nothing in the world that I am more proud of than you. You are a joy and source of happiness to me. I now realise that I am a good person. I have made some dreadful mistakes, that's all. The biggest one of all is that it has taken me so long to examine my beliefs properly. I tried again and again but never had success. I didn't know how to examine beliefs, but I now do. Having made a start at the age of 62, I have made really good progress in a matter of weeks. A miracle has happened. I am essentially the same person I have always been but I have changed in a miraculous and fundamental way. I am joyful, relaxed, coping well with my tumour, positive, renewed and excited.
I have admitted that many previous attempts to fix my problems have failed. What is different this time? This time I am sharing my problems. I am not trying to fiddle around with them secretly. I am putting everything out on the table for everyone to see. The risk - and the risk is very great - is paying off beyond my wildest dreams. My wonderful wife is helping me with my task and she is astonished to see how quickly I have changed. How can I ever ask forgiveness from her for the pain she has suffered as a result of my past mistakes? I will ask her forgiveness anyway. I suppose that having a serious malignant tumour has made it easier to take the chance. What do I have to lose! Family and friends are all accepting me as I am. They refuse to confirm that I am a failure. They tell me the opposite. I feel the love, prayers, warmth and care from all of you. I accept your gifts of love and support. In the process, I am changing so rapidly and easily into a person that I like, that it is ridiculous. I didn't know that it would be so easy. What a pity I didn't take the risk of sharing long ago. Maybe someone reading this note will be inspired to examine their beliefs properly and avoid the problems I have had to face. It is my fervent hope that I can help someone in this regard. If just one person gets the message, I will be glad I wrote this note and put it out into the world.
Tuesday, February 12, 2008
My treatment has not started yet. My medical aid has been asking for more and more clarity from the medical team about protocols, plans, procedures etc. and delaying the start of the treatment. It is getting quite frustrating knowing that my tumour is growing away in my brain while all this administrative stuff is going on.
I have just learned that this is what lies ahead:
- The medical aid has now authorised radiotherapy and chemotherapy.
- On Wednesday 13th Feb I go to the oncology department at Vincent Palotti Hospital for a scan and MRI. This is so that we can have another look at the tumour after the operation to see if anything has changed, and to localise its position accurately. They will then make a plastic mask for my head which will be used to immobilise my head in a standard, accurate position during the radiotherapy treatment.
- The detailed plans for the radiotherapy treatment then need to be worked out. I will find this really interesting because my wife has been a professional radiotherapy planning radiographer her whole working life and understands the process in minute detail.
- The radiotherapy and chemotherapy then start, but I am not sure when.
Some of the things that have happened to me recently include:
- seda has told me that they believe it would make business sense to acquire my CPE program. Negotiations and formal agreements still need to be worked out, but the positive intentions are wonderful. This makes me very happy indeed, and my confidence in seda has jumped a few notches up. Have a kook at the Business page in my website to put this in context, as well as my diary note called Exciting ideas for the future.
- I have suddenly gained new insights into the reasons for the origins of my dysfunctional beliefs and am preparing a rather long, detailed, personal diary note that will be posted soon to further clarify things in my own mind.
- Many friends have offered help and advice on a range of matters. This sharing process is totally new to me and is deeply appreciated. Total strangers in the street or the shops or the gym smile at me and say hello. This is a new experience. People are good.
- My weight has been rapidly declining. Since 14 January, when we discovered the tumour I have lost about 5 Kg. I have a ravenous appetite and am now eating more and better food to see if I can get the weight up again.
- I have been getting physically weaker. When I go to gym (which my oncologist says is a good idea) I am able to see how my muscular strength compares with what I could do before. I am a little alarmed to note that I have lost about 30% of my muscular strength in all the muscle groups in my body. Walking up steps is very much more difficult than it used to be.
- I have noticed evidence of muscle wasting, especially in the large muscles in my legs.
- My sense of taste has been affected quite badly. I now smother my food with salt and pepper in order to taste it and put lots of sugar in my tea (I can't drink coffee). Good wine tastes like water in which dirty feet have been soaked. But there is still plenty to enjoy. No problem.
- My eyesight has deteriorated quite badly. I now wear my reading glasses more often, and my normal multifocals are not strong enough. This has happened very quickly.
- My sleep pattern has changed. I now get up at about 3:00am routinely with my mind racing and hyperactive. While this makes me tired, it is not unpleasant at all.
- My wife had a remarkable, detailed, graphic dream which we discussed and analysed successfully. It is amazing how the subconscious mind speaks through symbolism in dreams. Her dream resulted in new insights for both of us and gave us valuable clues as to how to prepare for the future. This dream was a revelation to both of us.
- My lifelong depression has simply disappeared. I am confident that it has gone for good.
Friday, February 8, 2008
Several weeks ago I remember him spending a little time expressing his views on Blogs. I also remember agreeing with everything he said. He had never read a blog in his life (neither had I). He understood the concept as one where the blogger poured out personal maunderings into hyperspace, never to be read seriously by anyone (absolutely right, I thought). He would never dream of putting his own personal maunderings into the public arena for any reason (neither would I). I then tried reading some blogs, and found that the vast majority confirmed what John Maytham (and I) believed. But, I found some that were very good.
Then the unthinkable happened to me, out of the blue. I discovered on 14 January this year that I had a fast growing, malignant tumour in my brain. It didn't take long for me to decide that I needed to keep track of what was happening to me in order to help me through the initial fears and anger of hearing this unwelcome news. Having never kept diary in my life, I didn't know where to start. Did people really keep diaries in today's frenetic world? Surely not. Then, I remembered John's opinions on blogs and thought perversely about the possibility of starting one. I would start a blog - it would be private - and see how it worked for me. I would just regard it as a diary. So I took myself off to my laptop, logged onto the internet and started learning from scratch. The result is that this new boy in the street now has a blog and you are reading it!
Let me tell you, from my own perspective, what I understand a blog to be. I want to do so because I am finding the concept amazing. I am also finding that I am getting far, far more personal value from the process than I would have dreamed possible. I am using superlatives to describe the process because the process is superlative. So, John Maytham, I have changed my mind! If you read this, you may not change your mind one degree, and that is fine with me. It works for me, an initial sceptic, because of where I am right now in my life. You, a sceptic, unintentionally alerted me, also a sceptic, to the possibility of using this tool to help me through a life crisis. Thank you.
We all communicate every day, by talking to people and writing to people. Most of this communication is directed at an audience of one, but sometimes it is necessary in meetings or lectures, to address more than one other person. A blog is quite unusual because the person initiating the blog has made a decision that he or she wants to address a potentially massive audience spread across the world. Why would anyone want to do such a crazy thing?
I suppose that there could be as many reasons as individual bloggers. Why are people driven to blog passionately about their cats or their cooking or their tattoos? But driven they are. Setting up a blog takes a lot of effort, so they must feel very strongly about what they are publishing. In my own case, which is the only one I am qualified to talk about, I wanted to accomplish something very difficult, namely the reconstruction and clarification of my beliefs. I knew it would be very difficult to achieve this if I kept all my ideas and reflections secret. When attempting this kind of thing in the past I have always done so quietly and privately, reserving the right to fail again and again. It has never worked before. I wanted to challenge myself to explore beliefs and experiences publicly without the luxury of hiding. This has been challenging and frightening, and I have sometimes had second thoughts about the wisdom of my decision. But as things unfold, I have noticed changes taking place in me at a personal level that can only be described as miraculous. It has worked, and continues to work spectacularly. I am very realistic about it. The project is an intensely personal one, and I had thought that one or two people might have read an occasional diary entry. I am finding, to my surprise, that many more people are actually reading my entries (and I will freely admit that they can easily be classified as maunderings.) I am getting lots of responses in the form of emails and phone calls which tell me that many people have been challenged or even helped by merely reading about my private, exploratory thoughts. One of the key elements for me in coping with my position is knowing that my beliefs and experiences are boldly and clearly stated, and that they are not secret; they are out there in the world for anybody to see. In other words, sharing is the key. It makes me feel that I am part of the world, in touch with reality and people, actively communicating and networking. It makes me feel alive and relevant and hopeful. Sharing this kind of information is strange and new for me. It is definitely working, and my blog is an important tool enabling me to achieve this sharing. As time goes on, it is becoming an easier and more natural thing for me to do.
A potential danger lurks behind the use of a potent tool like a blog. I have found that the reality that builds up around my blogging activites is exciting and addictive. I need to be careful not to lose sight of the fact that blogging takes time and effort. This, in itself is good. But it takes time and effort away from other competing realities, like actually doing things with friends, actually exercising, actually accomplishing tangible things in the rough and tumble of physical life. Blogging is a personal, private, sedentary occupation and physically involves sitting for hours staring at a computer screen. If I were being observed by a visitor from Mars, that observer would battle to understand what I was doing just sitting still for hours. If I told that Martian visitor that I was creating reality and experiencing reality, he or she would simply not believe me, and perhaps suggest that I was smoking an odd kind of smoke! So, the name of the game is balance. I must work on it immediately. That means establishing a proper routine that I can actually practice daily, starting today, to make sure I am not neglecting other aspects of myself in the untidy and dangerous real world. It must be a nice, easy routine that supports me and not one that controls me.
I think that the word "blog" is awful. It is short for "weblog" which is not much better. It is a new techno-word which really means nothing more than "diary" as far as I am concerned. But, is a blog just a diary?
I am going to venture the opinion that it is much more. I have already called myself a new boy in the street, and it is probably dangerous to express opinions, but my naivete may add a certain freshness to the subject. I am finding that it helps to concentrate and focus my mind, knowing that other people might possibly be reading what I have said. It also challenges the fear I have described elsewhere, that I may be making a fool of myself. But, overcoming this fear is a part of my process of discovering and feeling the new essence of my real unique self. I have overcome that fear of failure and ridicule, largely with the generous comments of many of you who have read my efforts. I thank you very sincerely. I don't think you have any idea how much you have helped me.
At a technical level, the blog is a tool that can be used to network and find other people with similar interests. For example, if I say in my personal profile that I am interested in brain tumours, it will then instantly tell me which other bloggers are also interested in brain tumours. When I performed this simple exercise, I found that 14 other bloggers had declared an interest in brain tumours. I could then go and have a look at their blogs to see how they were handling their particular problems. Here are just three examples, one belonging to Marie, one to Jon, the other to Louise.
Just for fun - I believe that I learn best when playing - I tried to see how many bloggers were interested in some named interest - categories. Here are the results, some of which surprised me:
Women 9,200. Are women more interesting than men?
Sex 16,800. I was quite surprised that this was not higher
Animals 29,200. Greater interest shown in animals than people
Cats 19,700. Dogs and cats on an equal footing
Botany 656. Not exactly top of the pops
Ericas (flowers) 1. That's me out there on my own across the whole world!
Restios (reeds) 1. Me again!
Photography 162,000. What is this saying?
Astrology 5,500. I thought this would be the other way round
You will see that my blog is not just a diary. In addition to the diary entries, there are also some more or less permanent pages for things like My beliefs (which I keep fine tuning and testing all the time) My business and My pictures. You get to the various pages by clicking on them
There are also sections in the side bar down the right side of the screen for things like links to other sites of interest to me. For example, the Quackwatch site reliably debunks dangerous or vacuous medical notions that seem to float around freely and are accepted as true. On 8 February, it was reported in the Times of London that the long - held belief that the MMR vaccine (measles, mumps and rubella) has a causative link with autism, has now been finally laid to rest. There is no such evidence, and the original perpetrators of this terrible falsehood have apparently admitted that they were wrong. This information, carefully documented, with references has been available on the Quackwatch site for years. Do yourself a favour and have a look at the site.
I shall continue to blog away and tell you about my progress during treatment which I hope will start next week.
Thanks for reading.
Wednesday, February 6, 2008
My tumour has been found to be an anaplastic astrocytoma of at least grade 3 severity (1 is the lowest level and 4 is the highest) It is a tumour of the connective tissue of the brain, not a tumour of the nerve cells. It is a primary tumour, meaning that it has originated in my brain and not spread there from somewhere else. The adjective “anaplastic” refers to the characteristics of its growth. It is clearly a fast growing, malignant tumour, not a benign one. While this is not exactly good news, it could be a lot worse. Originally he thought it was a glioma multiforme which is a ghastly thing with a prognosis of 3 to 9 months. Mine is much better. The prognosis is always a difficult thing to come to terms with, because it is expressed in average months. In other words, it is a way of trying to understand it statistically and will always turn out to be wrong anyway. The prognosis for my tumour, with treatment is an average of 24 to 36 months. It might sound ridiculous, but this has given me a feeling close to elation. Imagine knowing that you can reasonably expect to live a good quality of life for that long. I think it is wonderful. Joan told me that I am walking with a spring in my step. Yes, I feel lighter and happier than I have for days.
If the pathology had been that of glioblastoma multifore (the one with the terrible prognosis) one of the serious treatment options would have been to refuse treatment. However, my astrocytoma is going to be more sensitive to other treatment modalities and the better prognosis makes it really worth thinking about radiotherapy and chemotherapy, even if these are unpleasant while they happen. In other words, if I can expect to get on with my life and be around climbing mountains, going to Summer School lectures and discovering more wonders in nature in a few years time, why not hit the thing with everything we’ve got? So, it looks as if I will be around for some time to enjoy my family, my grandchildren and friends. I think it is a good idea to go for further treatment and will be getting more advice from an oncologist soon. The neurosurgeon was quick to point out that the prognosis could even be considerably better. Referring to his little book with all the latest statistics, he showed that some people even make 5 years or longer. I can do that!
Monday, February 4, 2008
When the treatment actually starts, it will take place daily for 5 days per week and will last about 6 weeks. The efects of the treatment will last for a further 2 weeks after it has finished and the resulting inflammation and swelling of the brain will need to be contolled with cortisone during this time. If all goes well I should be back to normal about 6 months after the treatment starts. The chemo drug that will be used is apparently not likely to make me desperately ill, as some other chemotherapeutic agents tend to do. There may be a bit of patchy hair loss. No problem! I already have that anyway. What I am not looking forward to is the fact that I will not be allowed to wash my hair for the full duration of the treatment. Yuk! I have been told that I should be fine, just a bit tired. Well, let's see. I am very positive and will be as sensible as I can during the whole process.
Here I am, looking forward to the next stage. I am amazed at the personal transformations that have taken place deep inside me during the period since the tumour was discovered. I am happier and more peaceful than I have been for well over ten years. Joan and I laugh and talk and enjoy life together. Family, friends and even strangers are kind, gentle, caring. Life is smooth, I am surrounded with abundance, love and support. Inside, I have forgiven people, I have clarified my beliefs, I have sloughed off the fear and depression that has dogged me all my life. I accept myself as a good, valid and valued person. I no longer suffer shame and failure a hundred times every day. Life is light and good. In fact, what has happened to me is nothing short of a miracle.
One of the things I have been seeking for many years is an experience of joy. Years ago, when I was still trying to find this elusive thing through faith,I attended an Alpha course at my Church. I took it all very seriously and found it agonising that none of my questions were answered. The course was confusing and incomprehensible to me no matter how hard I tried. When we got to the part of the course that explored the gifts of the spirit, I threw myself open unconditionally to ask for joy. What happened was too ghastly for words. The person ministering to me started talking in tongues and assured me that my wish had been granted through the strength of my faith. But it wasn't to be! The joy never ever came to me. It was a sobering, humiliating, embarrassing experience that I have now put behind me. As part of the process of working through the trauma of this disappointment, I read the Bible from cover to cover, I studied other philosophies of reality and I started formally making a study of the brain. My beliefs have changed since that day of tears and tongues and disappointment. Here I am now with my present medical problem, filled with joy. Yes, I now know what joy feels like. I have been given a priceless gift and I am at peace. What does this joy feel like? It is not a wild, loud, charismatic, shouting emotion. It is a feeling like a gentle smile. It is quiet and it is infinitely beautiful. It is filled with humour and anticipation. It stays with me easily. I don't have to hold it with a tight fist. It is here to stay, in my head, in every cell in my body and the interstices between them. My depression has now evaporated forever. I am not in denial. I know that I have a very serious health challenge. But I am going to go down the joyful road and experience things I have never experienced before. What a priceless gift! Thank you!
Saturday, February 2, 2008
Last night was great. We were invited to an impromptu birthday celebration on Clifton Beach and joined our group of friends ranging in age from 30s to 60+. Lolling in the soft sand, we illegally but discretely polished off a few bottles of wine and mounds of food. We watched the sun slide down the sky until it disappeared peacefully into the sea, and chatted lazily about good times. I know that it is sometimes posible to see a green flash on the horizon just as the sun sets. So we all waited and observed. The conditions were clearly not right because no green flash came. But my personal conditions were different, aided by the knowledge that my brain tumour was sitting comfortably but illegally in my head. I had a flash of insight that can only be described as blinding. That’s what I want to record for myself in this diary entry.
Isn’t it odd that it often takes a shocking life experience to make one suddenly understand things that should have been self-evident in the first place? What I am going to explain will probably sound banal, but it has taken me 62 years to get the point. It happened last night.
As I sat on the beach with my very closest and dearest friends, all of whom know what my medical problem is about, I was aware that many of them had already read the thoughts in previous entries in this blog. These are very private thoughts and beliefs (that I want to share boldly and openly). But I suddenly had second thoughts. What do they think of me now? Am I the same person to them that I was before? Have I disappointed or offended them? Do they think that I am reacting like a gushing, self-absorbed idiot by pouring out all my secret stuff into a public forum like a blog? I was horrified, embarrassed and uncomfortable for a while, I must admit. Then I got it. Here we all were, just sitting in a warm, friendly circle, chatting, eating, drinking and enjoying each other. It was more than obvious to me that I was liked and accepted. Nothing had changed. In fact, a few private communications with these dear people convinced me that I have done the right thing.
This epiphany dawned on me when I thought about the source of the doubts and insecurities described earlier. They all came out of my belief systems, more specifically my illogical, untested belief that I am inferior, damaged, and therefore need to change who I am for others to accept and like me. The fear of not being accepted or liked, has stalked me like a lion my whole life. Yes, a lion! One of those cats with the big mouth and sharp teeth that crunch bones, tears meat and destroys you playfully if you let it get too close. I have been living my life mostly in a role that is not actually me. All my failures and successes have been born out of and motivated by FEAR. It has been a terrible and destructive fear. I have been a groteque construction of the person I think other people want me to be. Its crazy when I think about it. Now that I have started opening up and getting my beliefs into the light of day, I no longer have to defend hidden monsters that I didn’t understand myself and other people knew nothing about anyway. I know where this fear comes from, but that is another story. . . If my behaviour and beliefs are different from those of my friends, I now feel comfortable and secure about them. I am who I am. That’s it. Some of it is good, some of it is a bit dodgy, some of it may even be dull or eccentric or offensive. But I am relaxed about the package now. It is under reconstruction anyway. Thank you all for helping last night just by being yourselves. It was a gift of momentous proportions. I am not overstating anything when I used the word “momentous”.
So, what kind of person will emerge? The brilliant theoretical physicist, Richard Feynman is reputed to have said, “If you think you understand quantum mechanics, you probably don’t understand quantum mechanics.” I am going to take a leaf out of his book and show proper humility when deciding if I really understand what kind of journey I am starting now. I can honestly say that I am not sure how I will be. I suspect and hope that I will have the confidence to take more chances and be happy to deal with the outcomes even if they are not what I expect. I may not even change much. I think I will be more adventurous, but not always. I will be more accessible to people, but not always. I will be more positive, but not always. Whatever comes out will be me. I am looking forward to it. The really important thing that changed last night is that I can feel the change. In the past, I have tried to make changes to myself by reading books, going to psychotherapy, planning strategies and forcing myself to do things that I hated.
What I am sure about is that whoever the new me turns out to be, it will be authentic and real. It could be frustrating and unexpected, but I think it is going to be fun. Thanks to all of you who have helped me get here. I am feeling positive, happy, peaceful and excited. And, believe me, I am fully in touch with reality. A good place to be.