Cancer 173

I am in hospital for my consultant meeting prior to restarting my chemotherapy. I have had six weeks off, six weeks where we have been away three times, attempting to take advantage of the time. We went to the Netherlands, Yorkshire and Shropshire. All good, but I am exhausted. Holidays are supposed to be restful. You are supposed to feel better after them, ready for the next stage. I just want to go to sleep. My legs ache, everything else aches. Of course, it might not be the holidays, it could be the treatment, lack of treatment, time of the month, how the hell should i know?

This is my third visit to hospital this week -just to add to the exhaustion. On Monday I had my CT scan – no results yet – at Ilkeston. They have a new scanner. It is more convenient for me. The route is a bit of a change and there is plenty of parking. It was bloods yesterday, here at Derby. Inevitably my Hickman Line is still blocked, or rather it is functioning one way, stuff goes in but won’t come out. I flushed the line as usual in the morning and then came to the unit for my bloods to be taken. I might have had it done elsewhere, but I wanted information, which I succeeded in getting. I want this Hickman Line removed and a portacath put in its place. The Hickman Line leaves tubes dangling from my chest. The portacath sits under the surface of the skin, no dangling lines, and I can shower, bath and go swimming, which would be a bit of a change to my lifestyle. I hope to discuss it today with the consultant.

Today I also get my blood tests and hopefully my CT scan results. It should be terrifying, learning whether the cancer is growing and whether my organs are still functioning sufficiently to enable chemotherapy, but as we find with operant conditioning, one cannot stay permanently anxious. I have become rather blase about my results. Fortunately in the past they have been generally boring, with everything functioning OK and the cancer under control. This will fail, but when?

At times I feel like a fraud. I have said this before. I was diagnosed with incurable cancer that is going to kill me, I tell everyone, and two years later I still haven’t died.

I am limited in so many things. I can’t walk far, I tire easily, and I struggle with socialising. I have so many aches and pains I dont want to describe them. I have a stoma that is at times troublesome and usually sore, and I have what seems to me multiple hernias throughout my abdomen, held together with a band around my abdomen that is permanently uncomfortable because in order to work at all it has to be tight.

Socialising takes more energy than we think. I have always liked talking to people and listening to people, and I still do, but I can only do it for so long. If I am good then I function well for a couple of hours or so, then I turn into a pumpkin. It is almost like there is a switch in my body. Once it is switched, and it is often quite sudden, that’s it. I want to go home, or I want the people to go home. EVen so, this only works duri g the day or the early evening. The switch automatically functions in the evening at around 8pm, sometimes a little later if I am lucky.

People still ask me how I am. I usually give the British answer that I am OK. If I was truthful the answer would take a lot longer, and break the bounds of social expectations. When you are asked how you are then ‘fair to middling’ (or its modern equivalent) is the right answer. What I would like to do is explain how I really feel. I know people don’t want the details – particularly after so much time – but if I did answer then there is a whole set of things I would say. Some of these things stay the same for months, others come and go.I am sure no one wants me to die but if I answered the question in full then they might change their minds. They don’t want to go through this, even vicariously. Vicariously it is boring.

Recently I have got on better with writing. I am using my shed again, which helps. I have finished a rough first draft of my Wingfield Manor book (very short), so next I will get my article on the Siege of Leiden finished. It is for Battlefield magazine. I am enjoying being a historian rather than a psychologist.