Diary Update Tuesday, 30 November 2010

How do I feel today?  I always ask myself when I awaken, maybe not in words.

Chemotherapy next week

Today, I have mixed feelings. Nothing too bad, nothing brilliantly good. In some respects my body has fought off the worst of the effects of the November chemotherapy, but it has taken longer than at any time before. I expect the final time, starting a week tomorrow, to be worse, though psychologically I will have the advantage of knowing that it’s the last time these poisons are infused into my blood, that Christmas in coming and I share that with Tracey and Christian and I will see my girls.

Retraining my brain

I have to say though, that I have feelings of impatience towards myself. I expected to be able to walk better; to train my right ankle, knee and hip to mimic the left side, but even though I think about it and focus on it, the ankle feels like it won’t flex and the hip joint is spongy, so I walk like a person who has had a broken hip and it’s never been properly repaired.

Seizures

My right arm – sometimes I feel I am making progress, sometimes not. The seizures I had a fortnight ago when the steroid level was dropped too quickly for my body to adjust were probably more damaging psychologically than physically, yet I still feel as if I have to nurse the arm along. The physiotherapist’s manipulation didn’t produce a seizure in it, so it should be OK. Yet I hesitate. Seizures are my nemesis. They are a perpetual reminder of what’s really happening in my brain.

Steroids

Meanwhile, the continued steroid changes my body chemistry noticeably. It’s nearly six months now since I started Dexamethozone, on a quite high dosage though tapering off. It did the intended job at the time when I was at my lowest point mid-year, when the chemotherapy was failing and the seizures were increasing in number and duration.

I was determined not to acquire the classic facial shape and increased body weight of those who have to take cortisone for long periods, yet it’s happened. That unhealthy looking puffiness. Even though the use of the Dexamethozone steroid has fallen from 8 mg at the start to 2 mg now, it remains as an interference in normal body operation, especially as it is boosted to 8 mg for the three days per month the chemotherapy takes place. Lowering it any more than 2 mg daily runs the risk of new seizures.

Sleep

I also seem to be sleeping a lot, but that isn’t a bad thing. I’d like the pattern to be more fixed, but sleep comes and goes when it wants and there’s little I can do about that. I just have to go with it and be grateful it happens. I do feel a tapering off of energy as the effects of Avastin start to decline before the next treatment.

Good things

I am also grateful for the fact that I still have my rationality and my left hand, and the fact that I am still interested in the things going on in this world. If it weren’t for Tracey, I suspect they would mean much less to me. And family on both sides, and good friends of course: without them as well, meaning soon fades.


We have enough money to pay for the December Avastin, and that should be the last time payment is required. I am grateful for that, and for Avastin, and to everyone who made it possible.

Christmas wish

I want no medical dramas for myself until after Christmas at least. Well, of course, I don’t want any at all, but they will come inevitably. I just want as a Christmas present to sail through December chemotherapy as peacefully as possible, and for us all to have a happy time together.


I really don't expect people to be following these bulletins daily, but I just like to have something here that is current for those who drop by when you do. It is heartwarming to know that people are interested, but everyone has lives to lead and there's absolutely no reason why anyone else should be so engrossed in mine as I am!


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