Cancer 63

I am getting into a routine with the chemotherapy. Yesterday the third cycle started with a visit from the district nurse to take bloods, clean out my PICC line and change the dressing on my arm. Tpday I do the 30+ mile trip to see the consultant who will or will not permit my treatment. I have the weekend to myself, then on Tuesday I go into the hospital for the first stage of chemo. If my drugs are ready then it will take less than four hours of sitting in a chair among other people with cancer. If my drugs are not ready it could take all day. I am then hitched up to my bottle. The PICC line is connected to the bottle wihich is suspended around my neck. I wear this for two further days, with further chemo drugs gradually entering my bloodstream. On the third day of chemo the nurse comes to the house to disconnect the bottle and clean my PICC line again. I am then free until the following Thursday, six fulll days. Then it starts again.

The most stressful times for me are when I don’t know what is happening. This is four days every fortnight. The first is both Thursdays when the district nurse comes. I don’t have a time of arrival. On one Thursday the nurse needs to arrive in the morning to take my bloods so they can be analysed in time for the consultant the following day. On the other Thursday she comes later to ensure my bottle is empty. I am sitting around waiting for the removal of the bottle so I can start to move properly again. The stress is not the nurses’ fault. It is in me, not knowing a specific time, wondering if I will be forgotten, as a cock up could cause a delay to the next cycle, or a problem with my PICC line. The third stressful day is seeing the consultant, getting permission for the next treatment. The fourth stressful day is going to the hospital for my chemo, not knowing if the drugs will be ready or whether I will have to hang around for hours, waiting.

How do I deal with the stress? On the Thursdays I have a combination of trying to sit in my chair and occupy myself with reading or writing. When the bottle is fitted I am constrained in what I can do for fear of knocking it out of place. On bottle removal days I can phone the district nurse service and tell them my bottle is empty, though that won’t necessarily mean I will be dealt with sooner. They do have other patients you know. On the consultant day there is no point in fretting, so I sit patiently and read a book. So far the experience is over in minutes – though I am a little worried today as I was expecting a phone consultation but I have been called in. At worst it is because there is terrible news (I live with that day to day, to isn’t as stressful as not knowing the time the district nurse will arrive), at best is because she didn’t see me last time and perhaps wants to get a clearer idea of how I am. Dealing with the stress when sitting in a chair waiting for drugs? I read, I write, I chat to the nurses and find out about their lives, which I always find interesting.

I don’t know why I am more stressed about these little things rather than ‘Oh my god I am dying of cancer and I will die slowly and painfully, leaving behind all my loved ones and not having a decent old age’, but not knowing when someone is coming to see me is very difficult. It is in normal life. I like fixed times for appointments. If the district nurse said she was going to turn up at 4pm I would be happy with that. It is the not knowing. I have never liked it when people turn up late. If we ask people to dinner and say 7.30pm I mean 7.30pm and not 7.32pm. At 7.28pm I will start to wonder where everyone is. It is not that I am mentally ill you understand, I just like punctuality, and chemo treatment is not known for punctuality. I like the known, not the unknown, and chemo treatment involves a lot of the unknown. They may be known unknowns, but I don’t know they are known unknowns, except in a theoretical sense, to me they are unknown unknowns. It is a bit like invading Iraq when your name is Donald Rumsfeld.