Please read this dire warning
Let me make something very clear from the start. It is vitally important that you understand this. I am not offering any medical advice; this is just a story of how I experienced prostate cancer. If you have the same medical condition, your experiences might well be different to mine, and possibly to a considerable degree.
Not only that, even I would not follow my medical advice.
I’m in my dotage. The only good thing to say about being 74 years of age, as I am, is that it is a lot better than the alternative. But it’s still not pleasant. I’ve had a few old cars in my time, some of them expensive classics now, and in many ways I feel I am similar to them. I generally look the same but for some reason, specific items stop working for no reason at all; believe me, I’ve been there. But with old age it is much more difficult to get the bits replaced. Is my list of things wrong with me:
Like many people my age, I have problems with my back. L5 has degenerated and is causing a bit of sciatica, and nearer my head there are three adjacent vertebrae that I fractured an incident in the late 70s. I get a bit of pain from my back, although it’s all manageable.
I have a hiatus hernia which gives some stick at night, but normally only when I’ve eaten too much, or the wrong thing.
My knees; don’t get me started on my knees. In fact, that’s part of the problem; they don’t start.
In general, I’m not badly off for my age with regards to my state of health, apart from the subjects of this blog.
I feel old. I suppose I am old, although I don’t feel it. Mind you, I can see why many men refuse to shave once they retire. Staring at some old bugger’s face in a mirror every morning is a bit of a shock to the system.
One of the problems with being over 65 is that people treat you as if you are over 65. They ask you if you can make the stairs, as if you wouldn’t be off looking for the lift if you couldn’t. Your kids don’t ask your opinion, presumably because they remember all the previous times that you’ve been wrong.
What’s worse is that your kids become depressingly middle-aged. It’s all too easy when listening to them to remember when they’d been more adventuresome and willing to take a risk. They shake their heads when I refuse to dance, but then, when we discuss the current political situation, they opt for the same old same old.
I started taking diuretics. These limited my range as I have to work out where the nearest toilet is before going anywhere. You must have seen the stance people like me take up, where we stare around a pub or shopping centre, frantically trying to find where the toilets are. It puts us at our age.
I was in a public loo which was equipped with motion sensors for the lights. I’m all for saving power, but I think the needs of the retired gent have not been taken into consideration.
I’d just got out of my car. My wife had walked off as I made my way towards the public conveniences. I had no urgent need to relieve myself as I would always go before leaving the house, and without fail, but the over 65 ‘just in case’ attitude I started to follow ensured I gave it a good go.
On came the lights as I walked in. I did the necessary disrobing, and waited for nature to take its course. It took a while, so long in fact that the lights went out. I’m not scared of the dark, but being a man, half dressed, standing in the dark in a loo is not everyone’s idea of a comfortable situation. What to do?
I did what most men would, and waved my free hand in the air. It produced no result. I thought I was probably out of range so took a step away from the urinal. At that precise moment, another chap entered the room, activating the motion sensor of the lights.
There was I, too far from the urinal, but with everything exposed, with one hand waving in the air.
It was not a good look. It is what age has done to me.
He went directly into a cubicle, which, I think, suited us both.
Getting old can be embarrassing.
I went to Moat Park in Maidstone. Given that my bladder was about to be worked on because something got big – a pin stuck in it multiple times in fact to see if even more indignities were to be thrust upon me – I had to visit toilets more frequently than most. There were three urinals. The one of the left was occupied so, as any bloke would do, at least someone of my age, I went to the one on the right, leaving an empty one between us. Then shock, horror! It was the one for little boys, the bowl being about 9” lower.
I was in a quandary. I didn’t want to stay there, but I could not take a step to the left and use the urinal next to the bloke after I had gone to the one on the right first of all. I could not, of course, point out to the bloke that it was there for boys as no man starts a conversation in a toilet. I should have gone into a cubicle.
Perhaps I’m not so much of a modern man as I thought.
It got to the stage where I preferred the new electronic urinals that flush when someone comes up to it. The running water reminds me of days gone.
The first indignity
I’ve begun to notice that it is seen as misogyny for a bloke to comment, even jokingly, of a woman’s reaction to a hot flush. It’s not the done thing. However, the fact that late middle-aged men have to urinate more frequently, and rarely have a full night’s sleep, is fair game for the fair sex. It’s lucking I’ve got something else to worry about, so can’t be arsed to write a ‘disgusted of the commuter belt’ email to wherever.
Two hours without a pee eventually became unusual. I mentioned this to my doctor during a discussion about blood pressure levels, the treatment of which included a diuretics, and all of a sudden normal service ceased to exist as regards to my dignity.
I was told to drop my trousers and underpants, and to bend over the table. I then heard the slap of plastic gloves and the lid of what turned out to be lubricant being released. The doctor then stuck his finger up my arse. There is no nicer way of saying that.
I think it was a relief to both of us that the examination did not take long, and on the positive side at least there was a result in that the doctor said my prostate was enlarged slightly and he would take bloods for an examination of my PSA. (Why plural? I sorry to be diversionary, but I mean to say. How much blood makes for more than one?)
This is the first the set of initials that anybody with prostate problems will experience, and will quickly become proficient at using. It’s a sort of password in a crowd of old-uns. You become ‘one of us’ when you drop them into the conversation.
It stands for prostrate specific antigens. It stands for monitoring levels, of comparing them, of going on the internet to discover is there’s a critical number that should concern. There isn’t as such as PSA is nuanced. Great, eh?
Importantly, there is nothing specific about a diagnosis of cancer in its use. There are suggestions that it gives false positives, which of itself is not particularly concerning, but also gives false negatives which, given that 7% of men with prostate cancer would read below the danger line on a PSA test, the problems with it are rather obvious.
Despite knowing this, the fact that my level was below the one drawn in the sand did bring considerable relief to me. I resumed my life with the promise from my doctor to have a blood test every six months to check the levels. I got on with my life.
Four years later, the phoney war ended.
Rings and claustrophobia
I had a series of MRI scans (another set of initials we get to become too familiar with). I haven’t taken to them. They are noisy, they are cramped and the only thing they prove, at least to me, is whether the victim is claustrophobic. I was place in a tube, with my arms touching the sides and my nose about a hand’s width from the top. That’s bad enough. What makes it worse is that it takes about 45 minutes, and given the reason I was there, it’s a long time.
Magnetism isn’t as straightforward as I was led to believe at school. Fair enough, that was back in the dim and distant, and magnetism had only been invented for a few years, but you’d think that in that time they’d have sorted the main parameters, but no.
You have to remove all metal objects, including zips. I forgot about my wedding ring (but only as far as wearing it) and was quite worried about a weird feeling on my finger during the investigation. I realised I’d left it on, and mentioned it, by way of apology, to the radiographer. I was told, ‘I shouldn’t have made any difference as gold isn’t a ferrous metal. What had my wife fobbed me off with?
It seems that the radiographer was not fully au-fait with the intricacies of electromagnetic fields. I mean, it’s her job. Anyway, a Google showed all sorts of wondrous events that can happen when a magnetic field and a metal ring interact. It’s interesting. A chap called Lenz made a law about it, but I expect it is only advisory given the radiographer’s ignorance of it.
The result of one showed some concerns. It was time for the next step: an entry.
I was told I needed a biopsy. What they meant was that they needed it. It seems the doctor’s finger was merely a scouting party, and a significant incursion was on the way. I was to have something technically advanced stuck up my arse and pins would be stuck in through the wall of my intestines to grab bits of my prostate. It was explained in more technical language but the vernacular covers all the procedure.
The process had a surreal quality. Quite bizarre at times. I’m writing this a few days after the event, and event it was, but it has a sort of dreamlike quality to it.
I was given a prompt hospital appointment with less than three weeks’ notice, never a good sign. It came with reassuring directions to the hospital, notification I could eat breakfast that day, and drink an unspecified amount of water, like you never do if you have an enlarged prostate. The result, I was reassured, will be given to me within about four weeks of the biopsy.
In I trundled, after being dropped off by my daughter, and was required to wait briefly while the nurse sorted out the documentation. I was asked a series of questions, ones which I’d been asked for so often before that I could predict them, and I was taken to a side ward with two others. One looked about my age, but was in point of fact eight years younger, and there was a late middle aged chap who seemed nervous.
There was an eclectic mix already in the ward, with all five beds occupied. I was put next to a chatty chap who had come in for a similar procedure four days previously, but had not been released due to unspecified ‘complications’. That was about as reassuring as you could predict. He was an unending source of what I later discovered was dubious information.
The chap in the far left corner was in for an unspecified procedure, one which he wasn’t prepared to discuss, so we could only do so once he’d gone for the biopsy, and we could get the full SP the chap next to me. It was disappointing mundane and I won’t bore you, as we were, with the details.
I had opted for a local anaesthetic as I had a fraught history with full sedation. It’s a bit involved, but if you are reading this far, you probably know it was likely to be. Some years ago I had a strange lump on the side of my upper jaw inside my mouth. It wasn’t painful, and this sounded an alarm bell to my dentist who advised me to see my GP. I was booked in for a hospital appointment. After an X-ray, I was told there was some concern and they wanted to ‘do’ a biopsy.
In I went on Monday and was given a pre-med. After that, it all went blank until Thursday morning. I was kept in because they were concerned about my ability to think. Lucky they hadn’t seen me at work. On Friday, I was told I would be discharged that evening as the ward was hardly manned over the weekend. I was released, on my own recognizance, to the custody of my wife once she promised that she would keep an eye on me for the next three nights. Which she did.
About 20 years ago it was discovered that I had two lumps, one either side of my voice box, and I was told they needed to discover whether or not they were cancerous. I was booked in, this time on the Sunday afternoon, and informed by the surgeon that should they find that the lumps were cancerous I would be given a tracheotomy which meant the losing my job. As you can appreciate, I was a wee bit nervous.
Early Sunday evening I was seen by two anaesthetists, one, the person performing the task during the operation and the other, I was told, was a consultant who would monitor the procedures. I had no idea whether this was normal not. Then came the bad news.
They said they wanted to discuss the problems I’d experienced in the previous biopsy. I said I was unaware I had any. They expressed surprise. They had a brief discussion amongst themselves, the gist of which was whether to tell me what had happened. I’d said as they’d opened the door there was no way I was going to go into the operation without knowing what happened last time.
Briefly put, my heart rate during the operation went up to a number I forget, but it was well over 200 bpm, which is bad, so bad in fact that it can stop your heart beating.
My heart stopped beating. In fact, it stopped for some seven minutes, which is worse than bad. I was given external cardiac massage. The underling anaesthetist asked me, “Didn’t you wonder why you had such a pain in the chest?”
I didn’t know the first thing about operations so a painful chest seemed to me not worth mentioning. I thought it time I took control.
“Are you telling me I died on the operating table?”
“It depends what you mean by died,” was the rather unhelpful, not to mention concerning, reply. I mean, who wants an anaesthetist who doesn’t know what dead means?
Their conclusion was that the problem with the raised heartbeat was due to my nervousness, essentially being a bit frightened of the procedure. You don’t have to be a genius, or well-versed in evidence, to realise this wasn’t the most calming suggestion given that I just been told I died under anaesthetic, and was going to be given one the following day.
As it turned out, the procedure went quite well apart from the problem of me not waking up for six days, presumably because they gave me one of the largest sleeping tablets as a pre-pre-med I’ve ever seen; it was about the size of a suppository. I had to take it in front of them, sign a piece of paper, and on my way back to the bed I collapsed.
You can appreciate, perhaps, why I had opted for a local anaesthetic for my latest biopsy.
My first observation for my prostate exam is that the staff were helpful, thoughtful and understanding. Of the three others in for the same procedure, two had opted for full-med/sedation. They went first; ‘more chance of problems’ said the experienced chap after the first went. What this did for the confidence of the other chap opting for full med is unknown as he rolled onto his side, putting his back to me and the other local anaesthetic chap, and curved into a foetal position.
Perhaps we could guess.
A nurse took my blood pressure, telling me that it was raised. I asked her if she was surprised given what they were going to do to me. Me and the other local chap chatted away quite pleasantly, passing the time. I was irritated to discover that he would go before me. When he came back after 50 minutes, prone on his bed with a nurse at his head and another at his feet, I called across to him, “You took your bloody time,” much to the shock of the nurse at his head. Then it was my turn.
Eventually, I was on my back, on a table with my legs strapped in stirrups. I was naked from the waist down. The surgeon stood at the receiving end and said, in a light, conversational voice, ‘I’m going to tape your scrotum to your stomach’, and did. He had the decency to cover my bits.
He stood to one side and a younger chap, on a stool with wheels, paddled over and the surgeon introduced him. The chap looked up and all I could see over the coverings of my scrotum was the top of his head from the top of his mask. He was wearing eye protectors (you never know I suppose) and I gave a brief wave. He returned the wave, with uncalled for enthusiasm, and included a friendly, ‘Hi’.
The whole procedure was explained to me, in case I hadn’t heard him the first time. Or the second. I was sprayed with antiseptic, and then some freezing – really cold – jelly wiped onto my nethers. That was weird. It wasn’t so much uncomfortable as bewilderingly different. Perhaps I’ve led a sheltered life.
Then a couple of injections either side of my anus followed by a six-minute wait. When you’re naked from the waist down, with your important bits taped out of the way (of what?), and a chap in strange attire is sitting on a stool by your exhaust system, six minutes is a long time, certainly longer than six minutes. Then came a test for sensation, and I was violated, seemingly by the surgeon’s thumb. It went up, about two inches, a measurement you can’t prefix by ‘just’. It wasn’t a pleasant experience but as its purpose was to lubricate, I didn’t feel it was time to object.
Then came the device. It was, unfortunately, somewhat thicker than the surgeon’s thumb. There wasn’t any pain, but it was uncomfortable. It went up a bit further than the thumb, but nowhere near the eight inches that my brother, who’s recently had the same process, said it would. We’ll have words.
I asked why the inside of my large intestine was so sensitive. He said that it was needed for evacuation purposes. Who knew? Apart from someone who sticks his thumb up your bum for money.
Then came the 18 (I counted 17, but I’ll defer to the bloke in charge) needles which pulled out bits of my prostate; that was 9 either ‘side’. There was a faint sort of burning sensation, then a click from the machine each time which I assume it didn’t come from the weaponised end as any sound from that should have been well deadened.
I had a nurse at my head, chatting away. Very friendly, very relaxing, and a great help. She was at the nicer end.
There were three trainees in the operating theatre, just watching. I mentioned their presence to the surgeon, who introduced them (as if anyone on that table has any chance of remembering their names) as were the other five people in the room. It was all very pleasant. I say all, but not quite. The bit up my fundament wasn’t, in case you haven’t guessed.
The device was removed (for the sake of good taste, I won’t mention the sound it made) and then occurred the only painful, although mildly so, episode. There was a little bleeding and the boss surgeon used his fist to press up on (NOT IN, I don’t think I can emphasise that point enough) my anus for what seemed like longer than necessary, but then, I assume, that would go for any length of time.
I was then asked if I felt OK to stand up to cross to the bed used to deliver me, and presumably remove me. How would I know? I thought I’d give it a go. It was brought in, I got up, and then we were away.
The whole procedure, from leaving the ward to returning, took less than 45mins.
It’s fair to say that I was a bit nervous. To those who are looking forward to a similar process, I can say that there is no need to be concerned. It seemed all very efficient without being cold (apart from the jelly wiped onto my bits). I won’t go into all the rather odd sensations in various lower regions of my body, but there was a strangely unpleasant tingling in my penis, something that I haven’t felt for some time. I don’t want it again.
The only disturbing thing during recovery was when I peed blood. It’s not what any man wants to see, and, thankfully, it went after three goes. My heart didn’t miss a beat.
I await notification of the result.
The long term resident of the ward I was in, five or six days in there is considered long, as indeed I would consider it, told me to ignore the time limit of four weeks for the result of the biopsy.
“If it’s bad news, they tell you in about two weeks.”
You can imagine my relief when two weeks went by, then three and finally four before I was notified of a telephone call to come from the consultant informing me of what they had found when they went up my arse. I had already been told that if I was to be given the somewhat upsetting information of the big C, I would be taken immediately to see a Macmillan nurse to be given the full information about what was to come.
I was in the clear. I was surprised how relieved I was.
You can understand how shocked I was when told that I had cancer and I would be contacted by someone from the oncology department ‘soon’ to be a full as to the procedures to follow. I had been certain that I was in the clear, and I was glad my wife had demanded that she be present when I received a phone call, although part of the reason might well have been the fact that, with my shabby ears, I miss a lot of information given to me verbally.
Like anyone, I decided to act reasonably despite the news, as I had limited information about its seriousness, et cetera. While I was trying to sort this information out in my head, the consultant phoned again, this time giving me confusing information as to what was likely to happen, and that I would be contacted by a Macmillan nurse, again ‘soon’. It was, by then, late afternoon.
The next morning, a little after 9am, and a little after an interrupted night’s sleep, I received another phone call on the matter, this time from someone entirely different in many ways: a Macmillan nurse. She started by apologising for the ‘appalling’ way in which the news had been delivered, stating that it went outside normal practice, should never have happened that way, and she would take steps to ensure it didn’t happen again.
I had the feeling from her tone that she would be good to her word. I realise that the second phone call from the consultant must have been after she had put her point of view to him. She asked me what I’d understood from his phone calls, and I had to say, “Very little.”
She apologised twice more, despite me saying after the first one, “Thanks for that. From my point of view is over now, so don’t knock yourself out.”
She explained my situation clearly, precisely, without emotion and slowly enough for me to ask questions at each stage. For those in the know, the progress of the cancer is at level T2. This is one above the baseline, but then the baseline is cancerous as well. I was told there was a range in T, and they might discuss this if I was bothered at a later date. That was a bit of a relief as it meant, in effect, that the cancer was just one side of my prostate and all inside.
Then we came to the aggression level. I was told this was level 7. That’s not what anyone wants to hear, but the nurse was quick to point out that the lowest level of aggression, more than apologetic cough from the cancer it seems, was 6 as it was made up of two components. The lowest would be 3 + 3 of the two different scales, whereas mine was 4 + 3.
All this running around my head was a bit disorienting, but her next words were clear and precise: for someone your age, this level of spread and aggression is entirely treatable. Finally, some positive news.
While the mess the urology chap had made of updating me was irritating, the MacMillan nurse’s comments and information placated me. I’m quite settled and awaiting the next stage.
Day 1 to Day 7 – Why me?
I was riding my motorbike home from work and was held up by stationary traffic at the two-lane approach to the southbound Blackwall Tunnel. This is relevant. I saw in my offside mirror a car coming towards me at speed. Both front brakes were locked and smoke was streaming from them. I was in the middle of the road with my front forks level with the cars either side of me. I realised I had nowhere to go (just as well as it turned out) and pulled my thumbs from below the handlebars.
The skidding car, #1, hit the central reservation, then came sideways towards me at an angle. It hit the car to my offside, #2, square on, pushing it towards the left, and upwards far enough just to clip the top of my front tyre. It hit the car in front of it, #3, and then bounced back a bit, giving my front wheel a bit of a clip, and hit the car, #4, to my nearside. All this in less than a second. The occupants of all four cars required emergency medical treatment.
There was a strange feeling at the time, with all the carnage and injuries – facial injuries to driver #1, driver #2 could not move his arms or legs, but could breathe, driver #3 had been pushed into his windscreen and had, rather carelessly, got glass under his eyelid (he did not half go on about it) and driver #4, who had had his arm resting on the window opening, had broken it in two places, and the weight of the elbow ‘bit’ ensured that the skin sort of stretched where broken.
While helping with first aid with the victims as, due to the traffic chaos, the ambulances took time to arrive, my overriding feeling was, “Why me?” It was déjà vu in the next sequence of events with my prostate.
Let’s number the day of the phone call from the MacMillan nurse as Day 1. It was a Friday.
I was told that the prescription for the testosterone-suppressant pills I was to take for one month for the start of the treatment would, in normal circumstances, have been handed to me on the day of me seeing the urology chap. However, it had to be sent, electronically, to my GP, for him to sign and give to me. I was told to phone the surgery on Monday, Day 4.
I know me. Let’s face it, I should as I’ve been around me for some 75 years, enjoying all the same experiences. Given the news, and the long period of treatment, some seven months, I told my wife I wanted to take the week off and not have cancer until I’d sorted it out in my mind. It’s the way I do ‘things’. She said she’d deal with the surgery.
This is the story as told to me.
My younger daughter phoned the receptionist at my surgery on Tuesday, Day 5, to be told the prescription had been forwarded to my GP. Day 5, Wednesday, my daughter phoned the surgery to be told that the doctor would sign the prescription ‘that day’. Day 6 my daughter was told that my doctor had refused to sign the prescription as it was not in their remit. I assume this is a funding issue. The prescription was going to, not had been you noticed, was going to be returned to the MacMillan nurse.
Day 7, Friday, a whole week since the first transmission of said prescription, dawned dull and depressing. It would have been around when she phoned the MacMillan nurse to ask them what was happening. She was told that the GP was wrong, and she would sort it. And sort it she did. She managed to contact the GP, Day 10, and gave him the benefit of her training in the use of force. By Day 11 I was being given the information contemporaneously, and was told that the prescription would be sent to Boots for me to pick up on Day 12, Wednesday (probably, it is as confusing for you as me by now). I received a text to inform me that Boots had filled the prescription and I could pick it up whenever.
This proved to be an exaggeration.
Boots had a syringe and medication for the first of my two injections but the pills, the administration of which preceded the injections, were on order. They would arrive the next day, Day 13.
I did not appreciate being the victim of a turf war with regards to the funding of medication. According to the Boots pharmacist, who was intrigued by the battle of the budget holders, the medication was ‘as cheap as chips’, the NHS making a profit from every prescription filled and paid for.
I received a text at 3.30pm Day 13 to tell me that the pills were ready.
Why does this always happen to me?
The idea of spending a week without having cancer or having to cope with it worked well for me. I felt relaxed and up for a fight on the second weekend (Days 8 and 9). The irritation with the medication being delayed by infighting is irritating, but not unexpected.