Cancer 188

Well, that was an unusual day at the hospital. It was longer than expected. I arrived at 0730 and left at 1630. It started well, I met with a lovely ex-colleague from Nottingham and we had a good chat about life and books. It could have gone on much longer – I would have preferred that, but I had an appointment in a cancer ward. I arrived on time and went through to the ward on time, but my drugs had not arrived. This is quite a common occurrence. Pharmacy hadn’t mixed their poisons. They eventually arrived two and a half hours late but in the end that didn’t matter, I was elsewhere.

My new line, my new portacath, is not working properly. I have a reputation in the ward for the way my body disturbs all these lines – and I have now had every type and they all go wrong. It is as though my body is rejecting them. I am asked several times a day whether I am allergic to anything. I always say no, but perhaps I am allergic to cancer lines, whether PICC, Hickman or portacath. Perhaps that is what I should answer when I am asked the same question in a restaurant or pub.

With the portacath, a needle has to be inserted through the skin into the device. It hurts like a needle, just a pinprick, but when they couldn’t draw blood, the nurses thought there was a problem with the needle, so they tried four needles, one after the other. I won’t say it was the needle in the haystack, which was really a piece of straw, that broke the camel’s back, but it was close.

There was a need to check the line, so I was sent (by wheelchair to make me feel like a cripple) to the same room where I had the portacath fitted just over a month ago. I lay on a bed with an x-ray device showing my chest and a dye was injected to show the route of the line. I asked for an explanation of what was going on and it turns out the line is a little short. It should reach the large main vein as it enters the heart where it could be slightly loose. Instead it stops at the entrance where two veins meet and is less loose. It has myelinated – very quickly I thought – and so is – just like my Hickman line, my previous failed line – functioning with effectively a one way valve. Things will go in but not come out.

My options were to leave it as it is as the drugs go in fine, or to operate to sort it out. The surgeon did say the nurses will experience stress when not able to draw blood. I pointed out that my stress levels will be higher having another operation when I haven’t yet forgotten the last one (yes, it is like women remembering childbirth – probably, I am not a woman), so it has stayed as it is.

Except now I have a new level of permanent stress as at some point the line may fail and I will not get my treatment.

When I returned to the cancer ward my drugs had arrived and I could be treated. The problem is I have a longer treatment than most people so I was there for the afternoon.

Still, I had lots of positive interactions with people. There is a little of Oscar Wilde in the situation. I have these line problems, I am around permanently due to my terminal status, I interact with the staff,. I have become a prominente, high-value prisoner.

It was pointed out that I have a tan. I was suspected of being in the sun (I am not allowed in the sun). I was told I must use sunblock. I said I have never worn sunblock. I was told I would be back in two years, being treated for skin cancer. I said that I would be dead in two years anyway. I thought it was funny, but the humour wasn’t reciprocated.

I am wearing my bottle of flourouracil. On Thursday, I get to remove the needle myself, at home. I will try to draw blood, but will probably not succeed.

Cancer 187

I had a good night last night, one of the best. I slept from before 2200 to around 0600, and only got up for the toilet 3-4 times. That is one of the best sleeps since diagnosis.

I am also a lot better from my cold. Two days ago I was thinking, is this it? I felt so  bad. Now I am nearly back to normal.

This is how dramatically mood with cancer can change. Two days ago I thought I might not survive, now I am back to my normal optimism, that I can keep going for a good while yet. It is a little wearying having such massive mood swings relating to the imminence of death, something that never happened in pre-cancer days. Still, just one of those things you have to put up with when you have cancer.

This morning I had a CT scan, and now I am waiting to go in for an interview on Radio Derby. Life cracks on.

Cancer 186

I hate nights. Sometimes thgey are worse than others, but rarely are they good. There are occasional nights where I manage to stay in bed all night, apart from venturing to the toilet numerous times. Normally, I am out of bed for several hours for three reasons.

First, my stoma needs changing. When this happens I tend to leave it open for a while. I have an old fashioned view that skin needs to breathe. The stoma bag is constantly glued to the area of skin around the opening so it is a relief to keep it open, though I have to take care as during this time it regularly does its business. Wet tissues are the order of the day.

Second, I just can;t sleep so instead of tossing and turning in bed I get up and either sit downstairs and read or possibly watch something. This can last hours.

Third, I am in some pain so I can’t sleep. This might be stoma pain, hernia problems, or the general malaise associated with cancer and its drugs – difficult to describe as unknown outside of the experience of cancer.

Or, it can be any combination of the three. I know that when I go to bed, usually around 2100, I am likely to be awake and up before midnight. I might then be up until 0500, getting another hour or so of sleep before morning, as I am usually up reasonably early, virtually never after 0800, usually long before.

At the moment it is not so good. I have felt ill for a week or more. I probably just have a cold, the sort of problem that pre-cancer I would have shrugged off, but now it dominates. I have a deep chesty cough, and when I cough I have to hold my abdomen over my hernia, as it is protruding and feels like it is fit to burst. Coughing hurts, sneezing hurts.

I am taking the day off today. I didn’t go downstairs until after midday. I have not been out of the house. I am reading Richards and Klein and watching Gods and Generals. I will still go to bed early, I will still be up before midnight. I need to be better by Monday because I have my scan and then I am being interviewed on the radio. On Tuesday I have treatment. If I am ill they may not treat.

Sometimes the experience of cancer is not exactly a barrel of laughs. Still, it could be worse. I haven’t lost my appetite.

Cancer 185

I made a discovery at the hospital yesterday. As usual I had time to kill so after having a tea in Costalot which was disturbed by a fake fire alarm where all we ill people were sent outside in the cold to get iller. I hung around right next to the door for some warmth – most of the staff carried on entering the building to go to work. Tough folks these health workers, literally fighting through fire to look after their patients (except for the ones forced outside). I thought I would have a look at the MacMillan centre and see what they do. I have been in once briefly to get a leaflet on travelling abroad but that is it – rubbish for nearly two and a half years of treatment when the place is on the same corridor as where I get treatment.

It took some nerve going in because in my head that is where all the people who are psychologically disturbed by their cancer go so staff can go ‘there there, it will be all right’ (when it won’t). Get a grip folks, it’s just cancer. Something has to kill you and why not have lots of attentive nurses and others being nice to you for a few months or years.

I was pleasantly surprised. No, I wasn’t surprised, I expected it to be lovely. I went in, had a word with the receptionist about just being nosy and not really needing anything (stand up straight, try to look well, try to look like a man ready to build a house if necessary. She doesn’t know I would struggle to pick up a brick in one hand and a trowel in the other!). She took me to some comfy seats and made me a cup of tea, asked me if I needed anything else, and told me it was fine to wait here away from the bustle of the hospital.

I sat down for some peace, and opened a recipe book about cooking for cancer (not eating the cancer itself which is what the title suggested), saw all the dishes were the sort of thing the wife tells me to eat and closed it again. There was not an ounce of bacon for breakfast. It was all fruit and stuff. Three more people turned up with a volunteer. They sat down at my table and we ended up having a good-humoured chat about this and that. Really friendly. It turns out one of them has just been diagnosed with breast cancer, but she was as cheerful as the others. was disappointed when I had to go to my appointment and leave them there.

The MacMillan centre is the ideal place for me to sit and wait for my appointment, away from all the other people in the hospital who don’t have real diseases (cancer is a winner in so many ways). The centre wasn’t an unhappy place. Everyone was cheerful and joking. The staff were great, Add free tea and I thoroughly recommend it.

Cancer 184

Well, I am healthy again, as far as healthy goes with my body. When I say healthy, I mean unhealthy, because my latest worry is my hernia. Nothing can be easily contained within my abdominal area (apart from cancer, so far), and that is increasingly true of my hernia.

My hernia is a result of the operation, where my abdomen was split from top to bottom to remove cancerous nasties and my lower colon, and from having a permanent abdominal hole that is my stoma.

It is growing, poking out. It hurts when I cough. I cannot cough unexpectedly because I have to hold on to the hernia so it doesn’t explode, taking my guts with it. The hernia belt I use (thrupence from Amazon), does its best, and I replace it every few weeks, but as Scottie might have it, ‘I can’t hold her Jim, she’s breaking up’. The belts recommended by the hospital don’t work because they crush the stoma bag, leading to awful leaks. Not a good idea.

I don’t know if there is an operation I could have. Is it worth it for someone in my situation? What I need is to go to a vineyard, find a cooper, and get him to fit a metal belt. That would be a barrel of laughs….