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

Saturday, March 29, 2008

Lots of things went wrong!


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

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

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

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

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

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

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