Cancer 116

I started this post a little while ago but got distracted by treatment and life. I was back at the hospital a couple of weeks ago because my PICC line appeared to be slipping out – something that is not supposed to happen but had happened to me a few weeks before. The PICC line enters a vein in my upper arm, goes through the shoulder and down to the top of the heart, so the chemo drugs can have maximum effect. It is held in place by a barbed wire (a bit like a fishing hook), and as I say, is not supposed to slip.

I went into hospital a week last Friday to have the line checked. Inevitably it had slipped again, so it was removed, this time painfully as the barb was stuck. I don’t like to be a whinger when undergoing treatment but there are times when I think I am becoming more sensitive to all the needles, knives, axes and bludgeons that are constantly used on me. The line needed to come out as it was infected. There was a heady whiff and a pile of goo as the dressing was removed. It was cleaned up and I was put on a week of antibiotics – different to the antibiotics I am on permanently.

At least it gave me over a week without a line attached. It is heaven not to have a plastic tube sticking out of your arm on a nearly permanent basis. My left arm was in a bit of a mess, partly due to infection, partly due to constantly being covered in a dressing, and partly due to having three PICC lines inserted into a single vein for the last 9 months or so.

Now it was the turn of my right arm. I had the new line inserted on Tuesday, the morning of my chemo treatment. It is a weird feeling having it in this arm. I had become so used to being unable to fully manipulate my left arm but now I have to learn the same for my right arm. While there is no significant restriction on the movements of the tabulated arm there is a psychological restriction aided by the occasional sharp pain of the fishing hook.

I had a tiring day having my chemo administered on Tuesday, perhaps it was partly because the new line had just been fitted, but I was feeling generally tired, not just because of the administration of the drugs, but generally. How long can I keep going with this regime? I occasionally get a feeling that each treatment, each impact on my body, each pain, ache or itch, the state of my skin, my stoma, my restricting hernia, each restriction I have, each problem, all the drugs every day, are tweaking my resolve to live. It is not easy having constant treatment which, while only occasionally painful, is having a permanent effect and there is no hope of getting better, only a continuous process of this until I die. I have repeatedly said I am not afraid of being dead, it is just the dying process that worries me, the potential for pain, not only for myself but for others around me.

For the third time since I returned to treatment after Christmas the pump bottle did not work properly. Perhaps less than half the drug that was supposed to be slowly pumped into me over 46 hours actually entered my body. The pump is primitive technology, relying on the pressure inside the bottle to slowly push the drug up the PICC line. Out of five treatments in this period it has failed three times and once I was not administered it at all because of the first slipped PICC line. I have no idea about the effect this has on treatment effectiveness.

On the positive side, we have had the kids here for part of the Easter break. That always boosts my morale. I did speak of my concerns regarding how long I can continue with the regime, but my son put me in my place, talking about all the positive things in life. It worked well. I do have so many positive things, mainly the people around me, family and friends. While I have little downers I have lots of uppers. Apart from the day of the main treatment every fortnight I generally feel well – though tired – and we can get around and do things. We are off to the Lake District again, and then down to Devon to see the kids. There are a lot – perhaps too many – activities in the diary. It is difficult finding spaces to see people or just sit around doing nothing.

I am a great believer in sitting down and doing nothing, just reading or writing these scruffy blogs. I also have things I want to achieve. I am writing my novel (OK, I am delaying writing my novel through laziness), I am planning my book on Wingfield Manor, I have a further novel I want to write. I have no idea whether I will have time to do these things, I have no idea whether they will be published, but they are at least positive aims. At the start of this process, I didn’t know whether I would get my Applied Narrative Psychology book finished and published, but it is out (buy a copy, Amazon or CUP site).

There is more good news. When I saw the consultant – actually the registrar – we discussed taking time off treatment so I could have a break and go on holiday. The results of my scan showed that there are no significant tumour growths. The main one is a little over a centimetre long and half that in width. The same as before. There is another little bugger poking around near my rectum (that didn’t sound good did it?), again no growth, and then the little army of potential units in its usual place around my abdomen. The registrar suggested that instead of taking 6 weeks for a break I could consider 3 months. She even suggested that the break could be longer if I don’t get any further significant cancerous growths.

I needed to think about this, but not for long. On returning home we booked our holiday in France, and then booked a break in Scotland for a few weeks later, ie into the second 6-week period. The decision is made. It is 3 months away from treatment. No PICC line to slip and cause pain and itching. No going to hospital for doses of chemo-poison.

We are off to the east of France, to the Jura. We have been to the area before. Two weeks booked in a house in the countryside, with a few days gentle drive to and from home. Have I said I don’t fly any more so we are restricted to how far I can drive. While my record from home is Crimea and back, my condition means we are unlikely to get much out of France. We will see. Ever the optimist perhaps we will get that drive to Sicily at some point. That will at least save me having to put up with Italian food, my least favourite cuisine in Europe. But that is another story.