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

Sunday, September 28, 2008

Tributes to John

This photo was taken by Joan in the Cedeberg in January, when John did his last hike and climbed his last peak, the Wolfberg.


Having said that the previous post was the last, I don't know how many bloggers will be looking at John's blog again, but many friends have requested that I put the tributes paid to John by our sons on the blog. The funeral took place on Monday 15th Sept 2008. We had a wonderful service which was a fitting tribute to a brave, talented man and Ian and Michael captured the heart of John so well.

Ian's Tribute:

Early in January I was driving home from the shop with Hannah when
mom called to say that there was something wrong with dad. They
had just got back from the Cederberg. I knew then, before the
diagnosis that it was a brain tumour and that he was dying.

I felt cheated. Dad wouldn't see our children grow up. We wouldn't
be able to go on family holidays together any more. It felt like
the expensive bottle of wine we'd got him for his birthday that he
wasn't able to drink. The wine as it turned out was corked and
putrid. Fit only to be poured down the drain. A bitter irony.

And yet, we were granted time. Quite a lot less time than we'd
hoped for, but time none the less. And time is a valuable thing.
In this time I learned again that my dad was amazing person.

He was a wonderful father although he seemed unconvinced of this.
He would often say that one day, we might forgive all the mistakes
he made. The truth is that there is nothing to forgive. Because
of him, I got to experience a broader world than I might otherwise.

I walked and climbed in the mountains with him. I listened to music
with him and although my taste diverged somewhat I find that I'm
deeply influenced by the music I was exposed to as a youngster.
He could get a tune out of just about anything: a piece of hose
pipe, a saw, two recorders at the same time or a garden tap.

He always questioned everything and he wasn't satisfied with a
superficial understanding. He was fascinated by the sciences and
things that we don't understand, the very big and the very small,
the universe and the atom. He tried to think about things in new
ways, in unconventional ways.

He told fantastic stories and I remember sitting in a darkened rooms
in front of fires on holidays being regaled tales of utter misery
in windswept and sand-blasted family holidays. Always told with a
wonderful sense of humour so that the hardship became funny. He
told us how he'd once burned half of a documentary his father had
made because he'd discovered how well celluloid burned. When his
father found out, in stead of being angry, they burned the other
half together for fun. But, he didn't have a happy childhood and
he looked on with envy at the start to life his 3 grandchildren are
being given.

He was a proud grandfather who fell in love with his grandchildren
rather unexpectedly. Proud of their beauty and delighting in their
innocence and wonder at everything. All new and bright.

And then the cancer struck and slowly ate his brain while the
medicines slowly ate his body. And he had to think hard about hard
questions. The one question that troubled him most was what to do
about God. Fortunately God knew what to do about dad and so about
a month before he died he accepted Christ into his life. And he
was specific saying "I want it said of me that I have accepted the
truths in the bible for myself".

He didn't want to be remembered as he was near the end: weak, frail
and fighting for small scraps of dignity. But this is fresh in my
mind. In time this memory will fade and I will walk in the mountains
and stand in a place where you stood, or I will remember a story
you told and I will pause. I will remember you full of life and I
will miss you.


Michael's Tribute:

A letter of thanks to my father
My father was a remarkable man. In his last days he said to me, “I wish that I could have given you boys more.” In this vein, I would like to focus on some of the many gifts that we, his boys have received from him.

Loved his children

One of my earliest memories is this. I can’t have been more than 3 years old. During a visit to family friends, I crawled onto one of those foam body-boards that happened to be floating in the swimming pool. The next thing that I remember was a brief moment of bubbles streaming past my face. Unable to swim, I was sinking. Seconds later I was being pulled out of the water by my now very wet father. This would be the first in a long line of saves from imminent danger that my father would perform. I guess that I needed a lot of saving in my earlier years. My father loved us, no matter how difficult things might have been at times. He was always around for us and invested heavily in our future. We in turn love our children too and would do anything to keep them from harm. Thanks Dad.

Rewind...

Prompt and well prepared

Just before diving into the pool in his Sunday best, he had enough time to remove just one garment. Without thinking, off came his watch. Yes. My father was always prompt and well prepared; a sign of respect for others and a seemingly uncommon human characteristic these days. I too cannot stand being late for an appointment. In all, I have spent numerous hours during my life waiting in my car at my appointments destination for the time to pass so that I can “arrive on time”. Thanks Dad.

Love of mountains

Thinking about being well prepared reminds me about his love for the outdoors. I remember a story he used to tell about a particular expedition of his. He and some mates were about to embark on a 4 day hike. Having not been on such a long hike before, he diligently did some research about what to take. There was a food provisioning table in one of Sir Edmund Hillary’s books on tackling Everest. I imagine the logic went something like this, “If it worked for Everest, it must work for our 4 day hike.” So they calculated, measured out and packed the recommended supplies which included a surprising amount of sugar. ½ a Kilogram of sugar per person per day! It seemed like a lot, but it’s what Sir Edmund Hillary recommended so it must be necessary... It wasn’t... If anyone has found little stashes of sugar hidden under rocks along the path down the Wit-Els and couldn’t understand why, consider the mystery solved. Now we, your children also share a love of the outdoors. Rock-climbing, hiking and basking in the beautiful simplicity and ruggedness of the mountains, I will always remember you fondly.

Thanks Dad.

Computers and things technical

Something that may have helped the “sugar calculations” is a computer, although perhaps the formulas for Everest don’t translate linearly to the Wit-Els. My father was always keenly interested in technology. He purchased his first Atari kit-computer when we were very young, which he upgraded to a BBC-Microcomputer, and ultimately a PC as the technology advanced. He enjoyed creating, and found that writing computer programs was a good way to do this. This was a passion he passed on to both of his sons before they were 10 years old and who would later go on to start successful careers in the computer industry. Thanks Dad for your patience in teaching us about technology.

D. I. Y.

My father was never afraid to fix things himself. Be it a radio, changing the oil in the car or rebuilding a wind-blown fence. He usually didn’t have the right tools for the job, but that didn’t stop him succeeding. Through determination, perseverance and a little un-holy language, the job would get done. I was never particularly good at fixing things, in fact quite the opposite: I broke things. But that was counter-balanced as my brother received gift enough for all of us for fixing things. Like Yin and Yang, Ian and I would go around fixing things and breaking things respectively. Incidentally, Ian now always has the right tools for the job. Thanks Dad for at least imparting this gift on one of us.

Love for music

Music was another passion of my father’s. Listening to it and playing it. I will always remember my father for his ability to turn any inanimate object into a musical instrument. While extremely adept at playing the music of the classical masters on the piano, he was also known for his Cross-Cut Saw concertos, as well as his ability to play Frere Jacques on the garden tap which was transmitted via means of vibration to the toilet bowl which acted as a loudspeaker, much to my surprise as I was the audience, so to speak. Perhaps it was his ability to play two recorders – one up each nostril – that put my brother off playing music; one recorder belonged to him. That certainly put me off the recorder, but I moved on to playing piano, drums and guitars after that. Thanks Dad for such a sound introduction to music.

Love and respect for his wife

My father loved and respected my mother. He never questioned her judgement (at least not in front of us). My parents always made decisions together, especially when it came to us children. A united front is what we saw. This is something that I hope to achieve in my own life, now that my wife and I have also been blessed with a wonderful little girl. Us boys as grown men now love and respect our wonderful wives. Thank-you Dad and thank-you Mom for this gift.

Strength to start over

Late in his life, events conspired against him at his job in the bank; a job that was the foundation of security for him and his family, security that he was so desperate to provide due to the lack of it in his own troubled childhood. In the face of his worst nightmare, he was able to find the strength to start again. He used all his skills as a computer-programmer, a financial expert and a mentor to create a tool and body of knowledge that would help others succeed in business. The metamorphosis began. I could see that, for the first time, he truly believed in what he was doing. Over time he became less stressed and just seemed lighter and happier.
This was an inspiration to me. Having been working for the same company for almost 13 years, I felt sorely like I needed a change. I figured that I would get there eventually, but I didn’t really have the courage to take the next step. The shocking news of my father’s brain tumour changed all of that. Three months before he intended to retire, he was diagnosed with three months to live without treatment. With odds like this, I decided that I had to do something about my own life. Life is simply too short to be doing something that you aren’t passionate about. I quit my job with nothing but the faith that I would find my way. Almost immediately I found a new job, one that I am passionate about. Thank-you Dad for leading by example and helping me find the strength to do this.

The right crowd

My father always managed to surround himself with good people, good friends. Your presence here is a testament to that. Thank you.

Humble farewell

Dad, I know that your primary mission was to provide for your family. You have given us so much more than you would ever admit to. I am eternally grateful for all that you have done for me. You were truly a remarkable man.



Farewell all you Bloggers!

Thursday, September 11, 2008

The Last Post

Dear Friends out there who have been keeping track of John's blog,

It is with great sadness & a very heavy heart, but also with relief, that I am writing this last post on the blog.

Yesterday just before noon, John died peacefully at home. He left this world as he wished - he just drifted into a sleep & faded away quietly, without a fuss.

We are so grateful that this happened before he became bedridden. We still would get him up & dressed each day to sit in his favourite chair in the lounge where he could listen to his music. He was suffering no pain, nausea or headaches but he did have a fair amount of mental anguish as his mind became confused. Except for his steroid face, he looked remarkably healthy & took great pleasure in eating rum & raisin icecream whenever he could persuade us to give it to him. In spite of his mental suffering he kept his wonderful sense of humour to the end.

Dearest Johnny, rest in peace and until we meet again may God hold you in the palm of his hand.

Saturday, September 6, 2008

Update from Joan

Alas, John & I have not been able to sit together to post a message of thanks to everyone who has been so kind to us. John's condition is slowly deteriorating almost daily. His chest infection seems to have cleared & the awful coughing has stopped, but he is very weak & his mind is confused much of the time. We do still manage to get him up each day to sit in his favourite chair where he listens to music. Sometimes I read to him which he enjoys very much & a vote of thanks must surely go to Bill Bryson whose books have kept him entertained over the last couple of months.

I will do my best to say all the thank-yous that John would like to express. There are so many that I am not going to mention everyone by name but rather by deed.

Thank you for bringing us food: soup, suppers, goodies for tea & chocolate
Thank you for bringing us flowers: Mixed bunches, orchids & fynbos
Thank you for taking us out when John was still able to get into a car
Thank you for doing our shopping when I was unable to leave the house
Thank you to a very dear friend who travelled all the way from Australia especially to spend a week with John ( and me )
Thank you for your prayers - even people we do not know directly in other parts of the world & here in SA.
Thank you for all the love & caring which has surrounded us during this time, which John has at last been able to receive & bask in, & which has led him to know that there is a God out there.
Thank you for standing in queues at the traffic Dept, re-registering our cars & having them roadworthied.
Thank you Jess for coming to stay at a moment's notice to help me before I had managed to organise the nurses to assist & for transporting them at every change of shift.


There are some young friends who have done special things for John which have moved him to tears & whom I will mention by name:
Thank you Stephen for your beautiful photo taken in our beloved Cederberg. It is much admired & is placed where we pass it all day long.
Thank you Jo, together with Antoinette, for putting together such uplifting music of 23rd Psalm on CD for John. He asks to listen to it often & it transports him to another world.
Thank you Kerry for your moving poem written for John. When he is agitated I read it to him & he especially wanted me to post it on the blog for him. So here it is:

O God who created mountains
Shaped valleys with his hand
Watches dassies at their play
And yet sees all of life unfold

Your voice is in the cry of a newborn
In the playing of children
The sigh of a mother
The voice of a father

From the first breath to the last
The wind in the peaks to the ocean spray
I've found you in the scudding clouds,
The forests
The timid disas hidden near streams.

The mountains are your cathedral
The skies your glory
The stars your crown

And I - I have walked on the mountains
Seen you in their beauty and harshness
God of this amazing creation

I have loved finding

Endless places we've explored
Fires we've shared and stars we've counted
Through all of life and now to beyond

I hear a call to come higher up, and further in


For John & Joan - August 2008-08-12

Lastly we thank our dearest boys ( men actually! ) and their loving wives for giving us their unfailing love & support, time so generously given, assistance where-ever it is needed & for bringing our darling grandchildren to shower their Gompa with love.

As you can see the list is very long. This is a difficult time we are going through but in some strange way it has brought many blessings and we thank you one and all for carrying us through on a cushion of love.

Monday, July 28, 2008

Joan taking over blog

For some time now John has been unable to use the computer. He has asked me to take over the writing of posts on his blog. Many people have expressed concern that there has been no post for a while so I am writing this one on his behalf. John has a chest infection and has been quite ill this last week. It has really taken it out of him, leaving him more weak and tired than usual. He has so many thankyous that he wants to say and when he is feeling a bit stronger, we will do a post together where he can tell you in his own words what he would like to say to all of you out there.

In all this time he has not lost his wonderful sense of humour, some days it just bubbles up more often than others. Mostly he is comfortable, except for his chest at present, and in no pain for which we are both very grateful.

Joan

Thursday, June 19, 2008

Saturday, May 31, 2008

Very good news

Joan and I received wonderful news yesterday. We have been presented with our third Grandchild by our youngest son, Michael and his wife, Gill.We are so happy and excited. Little Chloe was born by Caesarian Section yesterday at 15:39 at the Kingsbury Nursing Home. No problems, no complications at all. Her birth weight was 3.275Kg. She is beautuful! How about that for wonderful news. Pictures will hopefully follow

Friday, May 23, 2008

Senator Ted Kennedy and John Freislich

Well well. I see that these things have nothing to do with power or influence. We are all human and are all equally vulnerable. Ted Kennedy has just been found to have a glioblastoma tumour in his brain. This is essentially exactly what I have - except that I know my diagnosis with greater accuracy. Basically what has happened to the two of us is that a line of primitive brain cells - glioblasts - in our brains have gone out of control and are multiplying much too fast, causing space-consuming lesions that shouldn't be there at all. Eventually they will take up too much space and cause problems that will make it impossible to go on living normally. They are also demanding a blood supply to try to stay alive, but outgrowing that blood supply, resulting in cavity formation as time goes by. They are a big, big problem. Not nice at all.

I am a lucky guy because I have far better friends than Ted Kennedy. I feel surrounded by my friends. They are so special. They all just going on being themselves. We chat quietly when necessary, or joke about things if that's what we want to do. Or we just do nothing, knowing that we are there for each other. Most of us have our mountain experiences in common, and that in itself is special, simple and fulfilling. We don't nee to pretend. Who needs more money, power or fame? Come on! Not me. All of you out there are amazing. Don't change who you are. There are plenty of things that I can't do any more. Like playing the piano. That is very frustrating. I can't climb the mountain. That is a bummer! But that may come back. But I am enjoying my food - ask Joan. She knows, and has just kind of accepted that I will put on a bit of weight. She even went out and bought me a pair or braces the other day to make sure my pants stay up reliably in all situaions (!) One mustn't take unnecessary risks. . . .

For the time being life is actually pretty good. I going to do my best to enjoy it. The prognosis for the condition is not great. I know that. But so what. No one lives forever. To read about Ted Kennedys tumour, click here.

I found it interesting reading the link about his tumour because it gave me enough distance from my own to put it in better perspective.

Tuesday, May 13, 2008

Latest medical update

This morning I wasw taken by Joan to see the oncologist. I am very weak, having to be helped out of a chair, and get tired very easily. I als get motionlly upset easily. on a good day my exercise iw limited to qa walk 6to the top of the rosd and back. That's it! A lot of these symptoms are due to the large doses of sterioids I am swtill on. We have now decidee to redce the steroids wtill further (see pevious posts). This could result in more convultions so we will havw to be careful. Anyway, we no ned to get the steroids out of the way so I can get my strength back..

Wednesday, May 7, 2008

Clarifying the previous diary note.

Firstly, thanks to all of you who either emailed or phoned to commiserate with me about the shocking nursing care I received during my most recent convulsive episode at the Vincent Palloti. Yes, it was horrendous and I would have expected better from a very well known and respected hospital. But I suppose things go wrong everywhere from time to time. It has highlited to me the importance of a team approach to treating a complex disease like a brain cancer.

In my case the medical side of my treatment has been absolutely superb. My oncologist has been more than competent, empathetic, communicative and sensible. The treatment planning and radiotherapy administration has been applied humanely, punctually and competetly by lovely, friendly ladies and I have always been made to feel welcome. The neurologist has tweaked my drug dosage so that it is now poised at just the right level. But, gee, the nursing side of things have let the team down badly as described below, leaving (literally) a bad taste in the mouth. I just get the feeling that they couldn't care less. Perhaps I am doing them an injustice. If so, please forgive me.

Yesterday, out of the blue at about 11:40am I received a very brisk, official call om a lady at Vincent Pallotti who didn't identify herself or give me her designation. All she said was that she had read my blog and was phoning to get more information as she wanted to do an investigation. After I established that she was a Quality process manager and got her name, I started submitting to some questions, but it became clear that I was going to become upset because of the interviewing style being used which was very direct and assertive. Anyway, following up this sort of issue is better than nothing, so, I have no basic complaint about the assertive initiation of the interview.

During the course of the interview I became rather emotionally labile (rememering that I am going through treatment for a brain cancer, and we agreed that she would phone back at a more aconvenient time.)


Thank you. I will be as cooperative as possible and try to help. I suppose it is dificult to get nursing staff to feel empahy for patients, but that is what is needed. Please forgivew the poor typing.

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.

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.

Tuesday, February 26, 2008

Treatment is now under way

Treatment started yesterday. I have already had some emails from people berating me for not having posted anything about it yet. The truth is that I have been waiting to see if any significant symptoms would develop - things ike nausea, vomiting, vertigo,bleeding, etc. Well, my frst dose of temozolomide was taken first thing yesterday morning and so far I have been completely unaware of any side effects. There is certainly not even a hint of nausea. Long may this last. It is good to know that my astrocytoma is beginning to be perfused by a chemical that is designed to shrink it. Good!

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

New look - Treatment starts Monday 25th


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

A wonderful day with special friends

I described in my diary entry on 19th Feb that I was planning to climb a mountain today, Wednesday, and that I had changed my mind because of my muscle wasting and weakness. My friends, Mike and Doreen accepted my cancellation of the climb gracefully and said they would be picking me up with Joan, my wife to go to Paarl and have more quiet fun - as in eating and driving and gently strolling around like a bunch of geriatrics. So off we went at 9:00 am this morning.

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

Waiting, waiting, waiting

I have been waiting, waiting waiting for my treatment to start and am now getting frustrated. I just want to start. I can picture the tumour cells multiplying, growing, invading healthy tissue, getting bigger all the time. Why is it taking so long? This morning at gym I bumped into a good friend who is a retired professor of oncology and had a moan about how long things are taking. He just said, “John, the planning takes time. You have to be patient.” OK. I just wish I could be given a definite date.

Later this morning I had a call from the hospital to make an appointment for me to see the oncologist this Friday 22nd Feb to give me my chemotherapy pills and to run through the details of my radiotherapy which is now definitely scheduled for Monday 25th Feb. Good!

I will make a list of all the things I want clarified so that I can get answers on Friday.

In the meantime, life has been going on. I have been going to gym regularly and having a really wonderful workout in the mornings. It is quite alarming how weak I am and it is obvious that my muscles are continuing to waste. No matter what I do, I can’t seem to build them up again. The cortisone is to blame, I think. I will clarify this with the oncologist.

Over the weekend, I arranged for some very special friends to take Joan and me to the Silvermine Nature Reserve on Wednesday to climb up to the plateau and then find our way to the top of the Kalk Bay Peak. Thereafter we would look for an unusual rock feature called the Cochlear Rock that has eluded me in the past. I researched this carefully and got instructions as to how to find it. I was really excited at the prospect of doing some mountaineering again. The day after making this arrangement, Joan and I took ourselves off to the Artscape Opera House to see Swan Lake on Ice, having bought two of the best tickets in the house (at very extravagant prices). Walking up the steps to the auditorium, I was appalled at how difficult this simple task was. That night I suffered cramp in my legs. How could I think of climbing a mountain in Wednesday? I had misjudged my physical condition and next day phoned my friends to apologize and cancel the planned mountaineering expedition. They accepted the decision gracefully and we will now go out to Paarl on Wednesday to have a more sedate tea and scones or some such treat. Very nice. I am looking forward to it. For the time being, I must be more realistic about my physical state and take things easy.

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.

A few days ago I broke some rules and jumped into my car while Joan was at work and drove myself off to gym. I was very careful, first checking my peripheral vision, and timing my outing for a quiet period on the roads. It was wonderful to drive myself. I drove carefully, defensively and responsibly and it all went fine. No problem! This probably wasn’t the wisest thing to do, but I am now a bit more adventurous than I have been in the past, so what the hell . . . It felt good.

Until the treatment starts . .

Sunday, February 17, 2008

Measuring things!


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,

Extraversion
Agreeableness
Conscientiousness
Neuroticism
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

Domain/Facet........... 2007.........2008

Extraversion.............. ....11.......... 81

Friendliness......................5.......... 82

Gregariousness........... ....1.......... 53

Assertiveness.................28.......... 78

Activity Level............ ...80.......... 69

Excitement-Seeking.....37.......... 50

Cheerfulness....................8.......... 96

Agreeableness

Domain/Facet........... Score

Agreeableness..................7.......... 68

Trust................................17.......... 65

Morality..........................48.......... 59

Altruism.............................1.......... 73

Cooperation....................46.......... 96

Modesty..........................27.......... 18

Sympathy.......................11.......... 48

Conscientiousness

Domain/Facet........... Score

Conscientiousness……....99.......... 96

Self-Efficacy....................75.......... 80

Orderliness.....................99.......... 86

Dutifulness.....................80.......... 95

Achievement-Striving..90.......... 93

Self-Discipline................99.......... 98

Cautiousness...................97.......... 62

Neuroticism

Domain/Facet........... Score

Neuroticism....................99........... 9

Anxiety...........................99.......... 34

Anger..............................99.......... 21

Depression......................93........... 4

Self-Consciousnes..s......99.......... 12

Immoderation................59.......... 10

Vulnerability..................99.......... 24

Openness to experience

Domain/Facet........... Score

Openness to experience.81.......... 95

Imagination.....................84.......... 75

Artistic Interests............86.......... 78

Emotionality.....................86.......... 95

Adventurousness............30.......... 81

Intellect....................88.......... 91

Liberalism..............46.......... 72


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:

  1. 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 .
  2. There is clear evidence of muscle wasting, especially in the large muscles of my legs. I think this is also caused by the cortisone.
  3. 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.
  4. 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!
  5. 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.
Well, overall I think things are looking pretty good. I am fast becoming a relaxed blogger and continue to learn lots of new skills. Life is great! As I said in the opening limerick, I'm happy in spite of the pain. By the way, there is no physical pain at this stage - only the psychological pain of knowing I have a very serious cancer in my head.

Friday, February 15, 2008

Treatment starts


On 13 Feb I arrived at the Oncology unit at Vincent Palotti Hospital for the treatment process to begin. They were to perform a new MRI and CT Scan, after first making a plastic mask for my face. The mask is intended to fit snugly over my face and will be used to immobilize and restrain my head in an accurate position during treatment, so that every time treatment takes place, everything is in precisely aligned.

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

Life story: Origins of my unhealthy beliefs

This is a very heavy, serious and long diary note. It is also very personal. If nobody wants to read it, I will understand, but if you do it will make me happy. It is at the very centre of the big mistake in my life, and I confront it here.

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.