Bile Duct Diaries XII


29 April, 2008



This installment is about starting the chemotherapy: Gemcitabine, or ‘Gem’, as the nurses call it. I have had three sessions, one per week, and am scheduled for 18 altogether. They go 3 successive weeks and then the 4th week off. That takes me to early October. The routine is that I go to the Royal Free Wednesday for blood tests to see that my blood cell count is strong enough for the treatment. The chemo is tailor-made in the pharmacy and can be altered a bit depending on the strength of my immune system, although recently a woman was being set up for the infusion and a nurse came in to say her blood cell count wasn’t high enough for the treatment and she would have to go home. So then I go back on Thursday for the treatment which is drip fed through a little plastic valve, called a cannula, that they put on the back of the hand. First there is the anti-sickness drip for about 15 minutes, which paradoxically, starts the vague feelings of sickness, and this is followed by the Gemcitabine for about 30 minutes.

So far my reactions have been bearable. After the infusion I have an ‘achey’, ‘fluey’ feeling for a couple days, but no nausea, and probably no hair loss. The worst of it is a kind of low grade muscle tension, as though there are electrodes attached to my muscles sending a low grade current through the body. This makes it hard to sit still and get comfortable, and I feel cross and irritable, but the paracetemol helps somewhat. After a few days, I seem rid of these feelings and back to the ordinary digestive pains. I now take enzyme tablets with all the food I eat, as the pancreas isn’t up to managing all the food I need to gain back the wait I lost during the pancreatitis and the operation. I don’t know yet whether these will have a permanent place on the dining table with the salt and pepper.

I learn a lot about the things we take for granted: for example, when you’re skinny (about 71 kilos) it is really uncomfortable sitting and leaning back on anything that isn’t well-padded. Park benches are torture. So I am filling myself with fattening foods and contemplating going to McDonalds for a Big Mac for the first time in 20 years. Only problem here is that the digestive system can’t cope with too many fats.

I am slowly getting stronger day by day. Trying to be patient. This progress makes a huge difference to Jane who can see a fairly normal future on the horizon. The more I tune into my surroundings, the more I appreciate how much she has done over the past 4 months. Also my cousin Nancy has gone back to North Carolina, with a vote of confidence that we can cope pretty well as a twosome.

It occurs to me that as I move out of the ‘worry zone’ and into the ‘slow, steady rehabilitation zone’ these Bile Duct Diaries will no longer carry the same meaning, and may be supplanted by other things people need to talk about. But I do want to reflect a bit more on all of this and share a few more thoughts with you over the summer.

Love to all,

David (and Jane)