Prostate Story: Part 2

Time becomes whimsical, when you’re waiting for major surgery. On the one hand, the days can’t go swiftly enough, as you want to have it all over and done with, and get back to normal life and hopefully health. On the other, they drag and drag with the apprehension about what it will be like, how long it will take to recover, what kind of after-effects you might have to face. (All helpfully described in the literature you’ve been given.) Even, whether the surgery will actually go ahead at all, when there are so many cancellations because of greater emergencies or staff shortages.

When you phone the day before (or 3 days before, if your surgery’s going to be on a Monday) to find out your admission time, it begins to feel very real and scary.

My surgeon phoned the day before to make sure I was happy about the procedure, and did I have any questions. That was nice. “Just come in a bit earlier if you can,” he said. So instead of checking in at 11 we arrived at 10, when I’d had nothing to eat since the previous evening, and no water to drink since 8 a.m. “Oh,” says the man at the desk, “he’s always doing that, he’s very keen.” So we still had to wait, not till 11 but till 12, because the procedure before mine had some complications.

Then I got to see the surgeon for last minute checks that what he was planning to do was what I had agreed and was expecting him to do, and to sign the consent form. Then, a little later, to meet the anaesthetist who attempted to put a canula in the back of my left hand. By then I was dehydrated enough that he couldn’t find a good enough vein and had to put another in my right hand. The scariest part was then having an oxygen mask placed over my nose, and panicking about not being able to breathe.

And I knew no more…

Until very drowsily I began to drift back to consciousness to find myself in the recovery room, with a nurse sitting next to my bed. I suppose he did things like ask me how I was feeling, take my blood pressure and stuff, but mostly I just hovered between being conscious and not. I think I remember saying Thank You to him quite a lot. This went on for a long time, and I didn’t have a watch and it was a while before I had my glasses on and could see where the clock was. I think he told me the operation had gone well and been successful. I don’t know how he really knew that, or even if it’s true, other than in the sense that I’m still alive.

Meanwhile Alison was phoning the ward asking how I was, and being told I was still in recovery (no explanation why) and getting more and more worried as time passed. Eventually she thought she’d come in and see me anyway, (though I’d assured her she didn’t need to), but when she looked outside, the car was frozen up and there was freezing fog, so she thought better of it. It was about 9 p.m. before I was taken to the ward, by which time I still didn’t feel like taking anything more nutritious than pain-killers and water. And so the first long night began.

Christmas morning came early. No idea when, it might even have been 2 or 4 a.m., when a doctor (I suppose?) came and relieved me of some blood. And then everyone’s saying stuff like “Happy Christmas! How are you feeling?” Urgh. At a more civilised hour a young woman doctor came and gave me a cursory examination, felt my abdomen, asked me to cough (a bit painful) I thought some food might go down nicely, since I hadn’t eaten for 36 hours. But even much later on, when they brought a roast turkey lunch (thoughtfully ordered by the man who’d occupied my bed the day before) I could barely swallow the smallest mouthful. Chew as I might, I couldn’t produce enough saliva to swallow, and could only get it down with a slug of water. Hours passed, slowly. They tried to get me sitting up, and standing up, but I felt dizzy and the nurse told me to sit down again. Eventually I made it to the toilet, holding on to the wall all the way, to try my first unattended leg bag draining.

My surgeon phoned, from the middle of his famil Christmas Day, to see how I was. He had visited me in the recovery room the day before, but I was still out of it. That felt like real service and commitment, too.

Nurse Ariana removed the drain from my side and covered the wound with a dressing, giving me more pain-killers and water as necessary, telling me about the disciplines I must follow in the coming days. How to empty the catheter bags. Fitting and use of the night bag. Keeping clean. Making sure I don’t become constipated. Wearing elastic stockings to help prevent deep vein thrombosis. Injecting myself daily with the anticoagulant dalteparin. This in particular was a real tutorial: description, part demonstration, then watching as I injected myself. I had thought I’d be asking Alison to do this for me, but under Ariana’s tutelage I resolved not to be a wimp, and become my own needleman.

Because it was Christmas Day, there was only one pharmacy working in the Trust, so we had to wait for our discharge drugs to be checked at one of the other hospitals and be transported over (by taxi?!) Then at about 3.45 p.m. I was released, and Alison drove me home at the end of possibly my Strangest Christmas Day Ever.

There’s lots to take in and learn and make sure you do. It’s likely to be uncomfortable, not altogether pleasant. But lots of other men have survived it all. And the care and professionalism of the people who are looking after you cannot be faulted. The documentation provided by my excellent hospital is very helpful, but one I’ve found on the Internet that’s even more helpful is the University College London Hospitals Discharge Information.

So, until further reports, just: THANK GOD FOR THE NHS. And thank god for the EU nationals, and other foreign nationals, who make it work.

Mind Tricks

Oh, the mind plays tricks, when you’re recovering from surgery, having uncomfortable, sleepless, or at least wakeful nights, constantly aware whenever you move or turn over of the catheter and the tube going down into the bucket that holds the night bag…

And in the moments of sleep, the dreams that come are dreams of strange anxieties, harping back to things that used to be major parts of your life, but now: well, not so much…

I dreamed I was taking a Holy Communion service for the nuns. In my pyjamas. Just when it was time to begin, I noticed that my catheter leg bag was full almost to bursting. With some difficulty I found the toilet at the far end of the dark cloister, but just as I was doing the business a family of about 27 tourists (including a dozen children) burst in…

Then I was half-awake for the longest time, reconstructing old proverbs. “If you rob one end of a person’s grave, you’re gonna have to rob the other.” OK, if you don’t like that one, let’s make it a party game or exam question: Complete this sentence: If you rob one end of a person’s grave…

Just the same last night. My anxiety dream was about conducting a wedding in a church I didn’t know, for a couple I’d never met. I arrived late and unprepared, just as all the other massed robed clergy (and why wasn’t one of them taking the service, anyway?) were already processing into church, and saying, “Come on, hurry up!” And when we got inside, I found myself in the AGM of something like the Esperanto Association of Britain, which went on and on, and I’m saying, “But what about the wedding? They won’t want to be waiting all this time, and anyway, I still don’t know who or even where the bride and groom are.”

Still, I must be getting a bit better. There weren’t any ghoulish proverbs last night.

Prostate Story: Part 1

If you google “How many men suffer from prostate cancer?” (which turns out to be a common query), the answers you’ll get include:

“All men are at risk for developing prostate cancer. About 1 man in 9 will be diagnosed with prostate cancer during his lifetime, but only 1 man in 39 will die of this disease. About 80 percent of men who reach age 80 have prostate cancer cells in their prostate.”

Does it run in families?

“Prostate cancer seems to run in some families, which suggests that in some cases there may be an inherited or genetic factor. (Still, most prostate cancers occur in men without a family history of it.) Having a father or brother with prostate cancer more than doubles a man’s risk of developing this disease.”

If you get prostate cancer, are you going to die? (Well, yes… the mortality rate for life is 100%… But the answer the WWW actually gives is:)

“The 5-year survival rate for most men with local or regional prostate cancer is nearly 100%. Ninety-eight percent (98%) are alive after 10 years. For men diagnosed with prostate cancer that has spread to other parts of the body, the 5-year survival rate is 30%.

I’m sceptical about the figure of 1 in 9 men getting this diagnosis (or 1 in 7 according to another source). Most of the older men I’ve spoken to about my recent experiences say, “Oh yeah… been there… done that…” (I’ve yet to see a T-shirt…) “You’ll be OK.” So the message seems rather: It’s very likely; it’s very survivable. And, as some of those friends almost evangelistically continue, when talking to other men: “If you’re over 50 or 60: get your PSA tested.”

My own ‘prostate pathway’ began after we moved to Thame. I’d been noticing one or two of the symptoms that are well-known indicators, and mentioned them to my GP when I went for our first meeting. She proposed an internal examination as the first step. Well, they say you should embrace new experiences as you get older…

(She: “You can have a male doctor do this, if you prefer?” Me: “If someone’s going to be sticking their finger up my bum, I’d rather it was a pretty young woman.” — No, I didn’t actually say this; and since she was an intern I got her male supervisor looking on anyway.)

The result was, my prostate gland did feel enlarged on one side, so the next step was for one of the practice nurses to take a blood sample and send it for PSA (Prostate Specific Antogen) testing. My level came back as slightly elevated so I was sent an appointment for an MRI scan. In all sorts of ways, this had been one of my nightmares. I’d only ever seen it on TV, where the patient disappears into a noisy, narrow tube, and so often suffers some disastrous reaction. For someone who is slightly phobic about medical dramas, and very phobic about being shut in confined spaces, this represented a challenge. But the reality was that strangely comforting – almost womb-like, you might say.

The literature tells you that, after the MRI scan, you may be called back for a biopsy. I got the distinct impression that around here this is not a ‘may be’ but a ‘will be’. Another new, and much more unpleasant, experience. The TRUS (Trans-rectal ultrasound) biopsy involves having a probe inserted in your back passage, with needles which stab you in the prostate 12 times, taking small tissue samples for analysis. The kindly women who inflicted this on me, in a kind of “Hail fellow, well met” manner, promised me that it would be possible for me to get a printout of the ultrasound picture of my prostate, which I could have shown off to my nearest and dearest in the manner of newly pregnant mums with their antenatal pictures; but alas, they forgot to do this. Their offer to reinsert the probe and have another go, I politely declined.

The biopsy showed that there were indeed cancerous cells present in my prostate, and you get this information in the arcane formula of a Gleason score, which is a mixture of the most common grade of cancer present, and the highest other grade in the samples. It’s a bit like being read a page from Wisden, so if you like that kind of thing, I’ll leave you to read all about the scores on one of the link pages. I was in the ‘low risk’ category, however; so the proposed action was: No treatment, but active surveillance. Sounded good to me.

Trouble was, after a year of quarterly blood tests, my PSA level didn’t do what I hoped it would: hover about around the same level. It continued to go up, indicating that whatever cancer was present, was growing. At this point you embark on the next step of the pathway: a second MRI scan, and a second biopsy: this time a trans-perineal biopsy which allows for more samples to be taken, and greater accuracy in selecting where they are taken from. I hoped that trans-perineal biopsy would be less unpleasant than the TRUS. It wasn’t, really. And, it was done by the male surgeon, rather than the hearty women.

It also revealed that I had transitioned from low to medium risk — only just — so it could be desirable to do something about it. The NHS is a lot about choice, these days — which is all a good thing! But it does involve a lot of the professionals’ time, explaining stuff to people who don’t know much about it and may well not want to know anyway. The main thing anyone needs to know is, that around here, they are brilliant at it. In the case of a man of my age and general health, there were two courses of action which are thought to be equally effective and successful: radical prostatectomy surgery, and radiotherapy. You get to meet the consultants in both areas in an event that is reminiscent of a fresher’s fair, with different interests setting out their stalls and trying to get you to sign up. The advantages, the disadvantages, the possible outcomes and side-effects, and so on.

The surgery option begins encouragingly with, “Well, we have to tell you that in rare instances, surgery can result in death…” After that, it does get better. For various reasons, we decided to opt for the radical surgery. One, if the cancer does return, you can have radiotherapy after surgery, while surgery after radiotherapy is often not possible, because of tissue scarring that can be caused by the earlier radiation. Two, it seemed at the time that surgery would be less intrusive on our lives, than having to travel to the hospital for daily radiation treatments. But what really clinched it for me was that the radical prostatectomy available around here is robot-assisted! keyhole surgery! It almost makes you want to become a surgeon, so that your work is like a computer game, shooting down prostate glands like space aliens. (This may not quite do justice to the procedure, though the short video clip we sat through that showed the procedure was pretty exciting.) I couldn’t find the exact video we saw online, but this (presumably, promotional) video gives an idea of it.

Having opted for surgery, we were told the waiting list was 10-12 weeks. As the weeks went by, we began to wonder whether this was a figure based more on aspiration than on the reality of staffing levels in the operating theatres. We prayed the surgery would take place before Christmas — and here’s why you should always be careful what you pray for — a letter arrived ‘confirming’ the date of my surgery as December 24.

(To be continued…)

There are lots of online resources about prostate cancer, among which the most extensive and helpful I’ve found is Prostate Cancer UK. The NHS site has lots of excellent helpful information. A starting point might be to watch this video. And there is, in fact, even a T-shirt: