Cancer 119

It has been a little while since my last blog. It has been a difficult few weeks. Since February there has been several problems. I have had pneumonia, and I have had several infections mainly due to my PICC lines. I have had three PICC lines fitted, one in my left arm and two in my right. The first two somehow managed to slip out, and the third led to a serious infection both at skin level – it was such a gooey mess that dressings wouldn’t hold – and, it turns out, near the heart as an analysis of my final PICC line showed infection at the deep end. Add to this most of the squeezy bottle treatment, where the bottle is attached for two days after the main treatment in the hospital, have failed. That means the fluorouracil has not been in there doing its job. This was the case for 3 out of 5 rounds. Another was cancelled because the PICC line was falling out.

PICC lines are not supposed to go out of position. They are held in place with a fishing hook attached under the skin (it hurts when removed, lots of things about cancer treatment hurt). Having three go wrong in under two months is a little extreme. When the final one was removed it was suggested that I take a break from treatment, which was a damned good idea because I was utterly sick of going into hospital and things going wrong. I can put up with a lot, but I was reaching the end of my tether, so now I have not had any treatment for about four weeks. My arms are recovering from their infections. You don’t understand itchy skin until you have cancer. I itch all over my body, which is suitably covered in rashes, cuts and scratches, and blobs of broken skin. It almost feels that my skin is peeling off, ready to leave muscles (such as they remain), tendons, and so on fully exposed. A skin transplant would be good, please.

In the middle of this, I have been measured up for and received a new belt for my hernia. It is very wide and has a solid plastic bubble to contain the stoma bag, so hopefully it won’t leak. It hasn’t yet, but it is only about day three.

I mentioned hurting and cancer treatment. At the start of the chemotherapy, I could happily put up with most things. I don’t mind people jabbing me with needles – fortunately, as it is a very common occurence. I can take pills without any problem. IT is over time that my resistance breaks down, that and the added discomfort of skin infections and occasional aches and pains with the stoma. In the last few weeks, the skin pain (and an itch is a pain at this scale) has become too much. I even started to dread having injections. I also wanted to avoid the cannula for the CT scan and the X-ray for the PICC line position. I didn’t want to go to the hospital for treatment. My patience was wearing very thin. I hope the break will reset my resilience because a week or two ago there wasn’t much left.

I have avoided mentioning the pain of the surgery and the subsequent weeks. It is better left that way. Forget I said anything.

With the current discussion about assisted dying, while I strongly support it, we do need to be careful about when it is accepted and administered. A week or two ago my mindset was that I am sick of everything, sick of treatment, sick of pain. sick of the idea that it will never get better, only worse, and while I wasn’t quite ready for the assisted dying team to come and finish me off I wasn’t far from it. Now, without treatment and having spent nearly four days without going into hospital – though I have been telephoned by health service staff each day – I am back to being happy as Larry, and ready for our holiday to Scotland in a couple of days.

Holidays. Another mess. I was told I could have three months away from treatment so I booked France and I booked Scotland. Then I was told this wasn’t the case and I am taking a break now, so we have lost quite a bit of money on cancelled holidays; bear in mind that I cannot get travel insurance. Our alternative is a new booking for Scotland. Only a week but it is better than nothing.

On my return from the break, I will be fitted with a Hickman line, which is another plastic tube which enters the top right of my chest and goes through the vein to the edge of the heart. They are harder to fit and remove than a PICC line, so it may affect future breaks (see, my optimism has returned enough to think about future breaks), though I was told that I could be trained to flush the line so I won’t need to be around for the nurse to do it. Don’t tell the nurses, apparently they may not approve. That means that if I can flush the line and change the dressings then there is a chance of getting away for more than the normal maximum of six days.

I seem to be focused on going away. I am not sure why. I live in an area others come to on holiday. I suppose I want to drive and see new places, even if it is just around Britain. There is a lot to see in this country. In the summer when I am back on treatment there will be no holidays, just day trips to interesting places, and lots of barbeques at home.

It isn’t easy having cancer, particularly when it is going to kill you. It is one long battle, with moments of quiet and moments of mental and physical agony. The sufferer needs a constant resupply of ammunition to keep going. Knowing that it is the final battle doesn’t help. Do I want to live in the trenches for months under constant bombardment, or is it better to just surrender? At the start of all this, I was optimistic and happy for the vast majority of the time, 90% plus. As time goes on and my resilience is battered this is inevitably reduced. The last few weeks were shit. The enemy made substantial advances. Fortunately, this appears to be over, and my optimism has returned, at least for the moment.