2010: A Year that Changed My Life - Part One: The Medical Stuff

Jan 01, 2011 15:52

Actually, my story of 2010 starts just a tiny bit before it, on the 28th of December, 2009, when I went to see my doctor, the splendidly titled Dr Mohammed Arab, after reading this post by fjm, made on the 27th December 2009. Without wishing to go into too much detail, I’d been having problems with, not to put too fine a point on it, my bowels, which was beginning to be a real concern. Farah’s post made me finally decide that I should go see my doctor, so I did. (In common with a lot of men, I suppose, I can manage to rationalise away almost any medical complaint, and put off going to a doctor until it becomes almost too late...) He decided, as there wasn’t much he could do diagnostically, that I should have a wide range of blood tests, so on the 13th of January 2010 I found myself having vast quantities of blood drained out of my left arm, into at least seven different vials, all of which were no doubt going off to different labs. I was back in the doctor’s surgery once again on the 25th of January to receive the results of the tests. (If there seems to be a long delay between my first visit to my doctor on the 28th of December and receiving my results on the 25th of January, this is partly down to the nurse in the surgery, who actually does the exsanguinations, being on holidays, and the country being brought to a standstill by a few inches of snow.) Everything came back as normal, with two exceptions: I had high cholesterol, and a high PSA, or Prostate Specific Antigen, level. Dr Arab suggested I should find myself a urologist to have this looked into further.

I’d been in the Hermitage Clinic in Lucan having an appendectomy in April 2009, so I decided to see if they had a urologist. A quick look at their website told me they had two and, as there was no answer from one phone number, I ended up with the man at the end of the second phone number, Mr Dennis O’Sullivan, as my consultant, who turned out to be a nice man with a very dry sense of humour (obviously it was his secretary who answered the phone, rather than himself). People have said that this seems like a very random way to choose someone, but it seems as likely a way as any, as far as I can see. So, I had an initial consultation with Mr O’Sullivan (the date for which I appear not to have written down in my diary), which led to my having a prostate biopsy on the 9th of February, not the most pleasant of procedures, it has to be said, which in turn led to a hideously bad infection, leading to a very rough couple of days while it burned its way through me. On Friday the 19th of February I went back to see the urologist to get the results of the tests. Put bluntly, I had cancerous cells in my prostate or, to put it another way, prostate cancer. There were various courses of action available, but surgery seemed the most sensible to me then, and it is a decision I still do not regret now.

When I wrote about this at the time, I said,

It seems that I have caught the cancer very early, and I am in no immediate danger of any kind. It’s all very fixable, so that’s what we’re going to do. After one or two more tests, just to confirm results, I’ll be going into hospital to have my prostate removed in around June or July. There’s no cause for alarm, and although there are things than can go wrong, they usually don’t, so there’s no point expending energy worrying about things that are unlikely to happen. I’ll be in hospital for about five days after the operation, then recuperating at home for a few weeks after that. Whereas this is not the most optimum result I could have got, it’s all now completely in hand, and can be seen as a minor inconvenience, rather than a life-threatening situation.
In hindsight, this was perhaps overly optimistic of me, particularly seeing as I was by no means in possession of all the facts, but I suppose I’m given to optimism rather than pessimism, and what I had been told up to that point did seem to be pointing in that general direction.

Anyway, further medical experiments ensued, involving any amount of blood being taken from me, and a substantial amount of allegedly medically qualified men prodding about at the back of me. I had an MRI scan on the 12th of April - this time the delay between this and my biopsy was to allow everything to recover, so they wouldn’t get any false results - and at some point went to see a radiology oncologist called Dr Osama Salib, who told me what my other options were, besides surgery. Essentially, there were two different types of radiation treatment: either they beam it at you from outside, or they implant tiny radioactive beads throughout your prostate. Neither of these seemed particularly satisfactory to me. The first one taken an enormously long time: First of all there would have been three months of hormone treatment, stripping away the male hormones from my body - no, I don’t know why, but I have images of Deirdre and myself sitting on the couch watching some weepie movie, sharing a box of tissues and a box of chocolates - and then there would be five minutes of radiation treatment a day, five days a week, for something like two or three months. The other form of radiation treatment involved having radioactive beads placed throughout the prostate. (One of the risks of this, apparently, is that it is possible one of these could be passed to one’s partner during sexual intercourse - nothing says I Love You like having a radioactive particle shot into your body by the person you love...) Neither of these appealed to me, both because radiation treatment is not always successful, and it is not possible to have surgery after it, whereas the opposite is possible, that is, radiation treatment after surgery, and because neither of them struck me as being the kind of thing I would be satisfied with - surgery is definite, and the results are quantifiable and physically observable, whereas radiation treatment would involve a lot more follow-up, and might not achieve anything, in the long run.

So, I was still going for the surgery, and met with Mr O’Sullivan on the 14th of April to discuss the results of my various further tests and my chat with Dr Salib, and to finally set a date for me to go into hospital. The date chosen was Thursday the 20th of May. Originally I was fine with this. After all, it seemed that everything was in hand: if you’re a man and you’re going to get cancer, then prostate cancer, if caught early, is the one to get. It spreads slowly, and can usually be excised whole, inside the prostate - you take out the prostate, you take out the cancer in the prostate. Everything was fine, and I would even have time to go along to a few events I was supposed to attend, and speak at, like Eastercon in Heathrow, and the Magus conference on Alan Moore in Northampton. However, this was not how things worked out. From the time we set the date for my surgery, I found that the time was weighing heavily on me. My anxiety levels were increasing - I was already taking medication for this, and have been for something like twenty five years, but I found I was getting anxious just out of the blue - so I went to my doctor to have my medication levels upped, which did help. However, I decided to pull out of going to Magus, and to cancel all my panels at Eastercon, although we still went along, travelling by car and boat, and staying with the jemck and her family in the heart of rural Oxfordshire. However, in the end I didn’t have to wait as long as I thought: on Monday the 3rd of May, when I still had three and a half weeks to go to my surgery, I got a phone call from Mr O’Sullivan’s secretary, Ann. They could move me forward to that Thursday, if I wanted? Yes, I wanted, and suddenly I found myself preparing to go into hospital in the next few days - and making a will, just in case - amongst other preparations.

So, on Thursday the 6th of May I checked into the Bon Secours Hospital in Glasnevin to have my cancerous prostate removed. I was, obviously enough, under sedation for the duration, but I’m told it was a long operation, partly due to my prostate being quite large, and in a very awkward small space. There were also some complications with getting a catheter into my bladder, apparently. In any case, all I know was that, after being give anaesthesia - which itself was not without difficulty, as the anaesthetist originally found it hard to find a vein to get a line into, as I have notoriously bad veins for that sort of thing, and I still had, three weeks later, the ghost of a bruise from one of his failed attempts - and starting to feel a bit psychedelic, the next thing I knew was I was being revived and put into a ward. I ended up in the High Dependency Unit, which does sound a bit like the poor relation of the Intensive Care Unit, it seems to me. While I was there, I had one of those morphine pumps that allows you to control your pain, but I found that the morphine was giving me dreadful hallucinations, all sorts of bizarre and disturbing visual gibberish that I couldn’t quite focus on, whenever I closed my eyes, so I tried to use it as little as possible as the days went on. (This also didn’t help whenever I tried to read, particularly because I had decided that what I was going to re-read was Hob’s Hog, the first chapter in Alan Moore’s Voice of the Fire, a strange piece written in a very limited prehistoric vocabulary. It took me days to get through it, a little bit at a time...)

The other thing was, I seemed to have vast amounts of tubes and wires attached to me. I had three cannulas in my left arm, and at least one other one in my right arm, and perhaps more. There was the drip from the morphine feed and the drip to rehydrate me, which may or may not have had their own ways in, or may have been going through some of my cannulas. There was also a blood pressure sleeve on one arm, which took my blood pressure every hour or so; one of those blood oxygen monitors on one of my fingers; a bunch of heart monitor stickers on my chest; a draining tube from the surgery itself; one other huge cannula, in case they needed to give me a blood transfusion, plumbed straight into one of my arteries, and a catheter into my bladder, along with its attendant bag, as mentioned previously. At one point I tried to count how many different things I had attached or inserted into me, but never seemed to be able to get beyond ten, largely due to my advanced state of medicinal intoxication, I imagine. These were removed a bit at a time, until eventually all I was left with was the catheter and its accompanying bag.

Having been admitted to hospital on Thursday the 6th of May, I was finally sent home on Tuesday the 11th, although with my catheter and bag still attached. This was eventually removed on Thursday the 20th, after being my constant companion for two weeks, and that removal was itself a singular sensation, and one that I will not forget in a hurry. “How much of that tube was there inside me?” I asked the nurse, once my eyes had stopped watering, and I had regained my equilibrium. “About that much,” she said, holding her two forefingers a distressingly long distance apart. Between six and eight inches, I’d guess, although of course I could be misremembering, for dramatic effect, if nothing else. Whatever length it was, it was now gone, thankfully, and will hopefully remain so. However, I was left with a reminder of why it had been there in the first place. When removing the prostate, the bladder is moved at one point, and the urethra is cut and reattached with a number of stitches, I believe. The net result of all of this, as well as the actually removal of the prostate and the two-week period with the catheter inserted, is that bladder control is severely diminished, certainly at first. I found that I was leaking urine almost constantly, whilst at the same time my bladder was still somehow managing to retain some of it, meaning that whenever I actually had to pee properly, the urine flowing over the point where the urethra had been reattached to itself always made me yelp at the end.

Writing after the operation, I said,

I’m finding this to be the case, although it’s improving. I fully expect that it’ll all be behind me soon enough, but I certainly wouldn’t mind if someone was to come along and tell me a specific date that I’d be done with it. Having said that, it’s not that bad, and if the worst came to the worst, I could live with it. Those nice Tena people, who do such cheerful ads on the TV for ladies, also do a certain amount of products for men, and they are at least saving me from having to change my nether garments every few hours, or leaving puddles after me like a new puppy. One can, if needs be, get used to pretty much anything, but I don’t think I’m going to have to. It was all caught while I’m at a comparatively young age, so I should be able to get on top of it pretty easily, and I’ll just keep doing my exercises until I’m tight as a drum again.
(Parts of the above are cut’n’pasted from the three pieces I’ve written so far about my prostate: Part One, Part Two, and Part Three. Everything from this point on, however, with the exception of obvious quotes from the above, is newly written as of today!)

Again, I was being over-optimistic. From the day I had my catheter removed to now, a period of over six months, I have had to wear what I call my Special Underwear, and I still find my incontinence to be a problem. If I cough, sneeze, bend down, lift anything heavy, or sometimes for no particularly good reason I can see, it happens - this is effectively much the same as stress incontinence in women, but more pronounced. So, I’ve decided that, early in 2011, I’m going to have a bladder sling operation, which should, fingers crossed, help to finally bring this particular aspect of my problems to an end.

Here’s the last of what I said after my operation:

What else can I tell you about all of this? I spoke to my urologist/surgeon/consultant, who told me that the cancer was more widespread than they had thought, and that there were microscopic amounts of it on the outside of my prostate. He thinks it’s unlikely they will have spread beyond that, but I’ll be having regular blood tests to monitor that, just in case. The thing about prostate surgery, of course, is that the area it is in has a lot of things going on around it, lots of wiring and tubing, as I’ve been telling people. Besides the relationship it has with the bladder, which I’ve already held forth about at probably too-abundant length above, it also has a hand in both sexual and reproductive functions, those being slightly different things. I am now, irreversibly and irretrievably, infertile. I am not, however, necessarily impotent, although it will take a little time for that particular function to come back to itself again. The prognosis is good, at between 60% and 80% functionality after a year, and anyway there are now those pills that my spam filter is continually catching offers about. It is not something I am worried about.

Actually, in general, I’m not worried about anything. Yes, there have been days when it was all a bit much, especially when it seemed I was going to spend my foreseeable future dragging a tube and bag set around after me. Mostly, though, I’m fine. I get tired, and that’s OK, as I just go back to bed for a while. I still have a bandage over my scar, and probably will for another few weeks, just to be sure it’s all healed properly. I may still have cancerous cells left inside me, but I also may not. I’m a bit incontinent, but nowhere like as much as I was when I first had my tube out, so it’s generally going in the right direction. And I seem to have rediscovered my ability to write, which was in hiding for a few weeks. So, I can communicate with the world, something that is important to me. I’m likely to be off work for several weeks yet, a period that will determine itself, in the end.
At this point, more than six months after the operation, I still don’t seems to be having any luck with recovering my sexual function, despite being put on a very strong dosage of a drug called Revatio. Having taken this for three months, there is no appreciable result, so I’ve simply decided to stop taking it, at least until I next see Mr O’Sullivan, which should be soon, as I want to talk to him about the aforementioned sling. I continue to have regular blood tests, and the cancer seems to continue to be absent, so that much, at least is fine. In the end, if I am stuck with being both incontinent and impotent, then that’s just how it is. Not all people who have prostate surgery end up like I have, by any means. I seem to have drawn the short straw, is all, and I still don’t regret my decision to have surgery. If I’d gone for radiation treatment I’d only be finishing it up about now, and I’d be much more unsure about whether it had actually worked or not. I like action, doing the thing that can be done now, and I never would have been able to cope with such a long and unsure process. It undoubtedly, as a treatment, suits others, but it would not have suited me. Anyway, I’m by no means out of options, and shall continue to see what can be done to improve my situation.

Tomorrow I shall write something about what else I did in 2010, the people I met, the friends who helped me through it all, the old friends I re-found, and about my life as a (nascent) writer.

padraig. medical, 2010, prostate

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