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

Tuesday, February 12, 2008

Still waiting to start my therapy

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.
In the meantime I have plenty to do and to think about. All the plans and self-examination stimulated by my previous diary notes still need to be followed through. I will make some changes to my website as a result, and record those plans in due course so that they are easily accessible to me at any time.

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.
I am feeling light, joyful, comfortable and optimistic.

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