The break from chemotherapy isn’t proving the enjoyable respite from feeling ill that I had anticipated. The persistent cough that I’ve had for ages took me to the health centre on Friday when I also started to get pains in my shoulders in the lung region. The doctor told me that I had a chest infection that could easily develop into pneumonia and prescribed me antibiotics for it. Can’t say I’ve noticed any effect from them as yet. This afternoon I’ve been coughing like a consumptive.
In the late Julia Darling’s blog about her cancer she complained of how annoying it was that not only was her cancer incurable its treatment also makes you “look funny” too. I’ve had a couple of incidents in the past week that have brought that to mind.
Just as I thought my skin wasn’t looking too bad I’ve had a series of comments about it from people which have really brought me down. For example this afternoon I bumped into a neighbour in the local organic shop where I’d gone to take my plastic bags to save the planet. After asking how I was he went on to ask, “Is your skin like that because of the treatment?” in a loud voice that caused everyone in the shop to look round to view the ravaged complexion of the freak handing over the carrier bags. When I look into the mirror these days I don’t feel too bad about my skin but maybe I am just getting accustomed to it.
Remarks like these make me feel like staying in and avoiding people. I sometimes wonder if people make them to feel good about their own robust constitutions. On occasion (and this was one of them) I wonder if people only talk to me to congratulate themselves on not having cancer. I’d like to tell him how much he’s upset me but don’t quite know how as he is not in the least a malicious man.
I have been continuing with my weekly round of chemo at Cookridge. Nearly every week, someone from the rota drives me there. Sometimes a different person will drive me back. But the chemo has been very hard for me to take over the past few weeks, which is why I haven’t written much here. My energy levels have been low, and I think I picked up some bug which I am still fighting off. Chemo lowers resistance to other illnesses. Yesterday I had an appointment with Sue the medical herbalist who says that my energy levels are the lowest she’s ever felt in me. On and off she’s been treating me since 1983 so she has the healthier me to compare things with.
The consultant has agreed to a break of a couple of weeks and I hope that I will regain some of the lost energy. I still manage to get out to the shops most days. But it is hard to arrange anything else. We had to postpone an invite on Friday to have a meal with GH because I just didn’t have the strength. This is another frustrating thing about the situation the way I can be quite suddenly ill at any time.
Last week, we went to down to arrange for me to get a disabled badge. The person administering it turned out to be M, who worked at the nursery Morgan attended as a toddler and who is really friendly and helpful.
Although Cookridge is so much better than Halifax, it can still manage to annoy. Last week, I arrived at a quarter to ten. It was nearly three before they started giving me the chemo. I had the appointment. They knew I was coming. Why the long delay? Some weeks I have to have blood tests first and see the doctor. I can understand in those circumstances why it might take a while to get the results and then adjust the chemo prescription. But most weeks this isn’t the case. So why do they have to make people sit around for such a long time, especially when they’ve had to travel up to an hour and a half to arrive? I am sure that there must be good reasons for these long delays but it might help us all to endure them if we knew why they were occurring and we received some explanation from the staff.
I heard the nurses discussing, “Mr A our favourite patient.” Apparently this man comes in at 9 am, registers, has his blood test and then leaves reappearing at 5pm to get his treatment which has by then usually been waiting for him at least two hours. The ward doesn’t close until 6 and he spends the rest of his time driving his taxi around Leeds. The nurses seemed to think that this wasn’t on as it often meant that they were kept waiting when they could have gone home! As I listened I mentally applauded Mr A and wished that I lived nearer to the hospital and could do something similar myself. In fact I began to fantasise persuading all my other fellow waiters to do the same as Mr A, all disappear and re-appear at around 5 for our treatment. I wonder if such a protest might lead to someone somewhere in the hospital administration working out a system where we don’t have to wait so long? I feel sure it’s not beyond the ability of people who manage hospitals to devise a system which doesn’t include waiting over 5 hours in order to receive 1 hour’s treatment, or to be in the hospital for 10 hours as I usually am every third week to receive 4 hour’s treatment.
I discussed this with a doctor friend yesterday who pointed out how lucky we are in this country that we have an NHS even if it does involve this ordeal of sick people sitting around in infection friendly hospitals for so long. Here I feel is one of the major reasons why British people put up with the inefficiency and time wasting which goes on within the NHS. We are always being told how grateful we should be that we don’t pay out at source as they do in so many other countries. But many of us forget that we either have paid or are paying for the NHS with our taxes which are in general far higher than those paid in countries like the USA with private health care systems. I remember in my thirties when BUPA kept sending me information about joining them and as a good socialist I threw their ads in the bin affirming my allegiance to the NHS as I did so. I didn’t think I would see the day when I would regret not joining but I have now. I am sure that if I was receiving private health care it probably wouldn’t be any better in medical terms than what I am currently receiving. But appointments would mean definite times when I would be seen or treated, not a time to arrive and then wait for whenever it suited the system to have me seen or treated. This waste of my time makes me feel less valuable as a person, somehow in-valid as my time is apparently so worthless it can be squandered in this way.
Three weeks ago I caught some sort of illness which had me in bed for 3 days. I can’t say I feel recovered from it yet. I still spend a large proportion of each day in bed and things that at one time I used to do without thinking such as put the washing on or cook a meal feel like major challenges and achievements when I have done them. I feel weaker now than I did a month after major surgery.