Welcome
I hope this page provides some help to those going through either of my health issues. It's tongue-in-cheek and silly at times, but that humour is what got me through this.
In the beginning The Lord said “Let There Be Pain” (and no holiday in Spain)
20 June 2019
I was 50 when it all started in 2019. I had a holiday abroad booked, but a small kidney stone had decided to lodge in my right ureter (pipe between kidney and bladder) causing me to question whether there was indeed a God, and ensured there was no holiday.
The pain was immense, the dog knew things weren’t right. As I writhed on the floor begging the good Lord to ‘take me now’, my faithful four-legged friend paced up and down. He wouldn’t ring for a taxi to hospital though, so I did.
The long and short: A few days in hospital drinking lots of water to get my kidney function up, the small stone passed, but a scan showed a staghorn kidney stone taking up the whole of my left kidney. Uh oh. I was sent home to await a date for an operation. Three years to be precise.
A staghorn kidney stone is certainly no friend of mine. In fact, if they could have removed that swine intact, I would have taken it home, doused it in petrol, set fire to it and shot at it with my air rifle – such was the discomfort it provided me.
My stone was caused by excess uric acid, and now requires me to have a none/low purine diet. Hey I’m not doing all the work for you, Google it.
It was February 2021 that blood tests relating to my kidney care revealed I had a high PSA reading of 9.79. It should be around 2.99. A high reading can indicate an enlarged prostate and/or prostate cancer. A bigger “uh oh” was in order.
But let’s do a Mr Benn and go back to 2020. In the 'Red Knight' costume because I liked that one.
From Woohoo! To Wuhan
1 February 2020
Around seven months later I was still waiting for an operation to remove the staghorn kidney stone, which I had named The Rock.
I was now getting the occasional bout of gout (despite rationing my glasses of port and red meat). Sometimes these bouts would last weeks, making it very hard to walk around. It was painful to even wear a sock, and I had to sleep with the offending foot sticking out the bed as the weight of anything on it was unbearable. Eventually I had to take some steroid tablets, one of which would clear it up the same day.
By the end of December that year I finally received a letter confirming an operation on 15 January 2021. Whoopieee. Apparently they make a hole in my back, shove a sonic vacuum cleaner in there, blast the stone to pieces and suck it out. It can take 5 hours (and did, more of that at a later date).
On the 8th January 2021 I had a PreAMS at hospital – an MOT to see how fit (or unfit) you are for an operation. However by 11th January they cancelled the operation due to some virus which had 'escaped' from a lab in Wuhan, China, a year earlier, which meant The Rock and me were still an item.
You Might Have Cancer
1 February 2021
From June 2019 to February 2021 still nothing had happened. No kidney stone operation.
As part of the ongoing kidney malarkey, blood tests were done in February 2021 and they decided to include a PSA test. This figure can be an indicator of an enlarged prostate and/or prostate cancer. This might explain my tiredness and peeing more.
In March my GP rang with the results. My PSA was 9.79, the GP said it should be 2.99 or below. He sounded glum. Could be cancer, could be high BPH related to bad kidneys. Referred me to hospital, who arranged an MRI scan of the prostate. If the prostate is enlarged or has any patches, they’ll do a biopsy for cancer.
So off to hospital I trotted for an MRI scan of the prostate. Strange to see the place deserted during the ‘pandemic’, and strange too to see entire seating areas taped off.
The scan of the prostate showed an abnormality on the right side of prostrate which indicated cancer. I'd probably had it for a few years.
The good news was that there were no signs of cancer in the lymph nodes or bones, but a biopsy was needed. I wish I hadn’t Googled what that entailed.
Biopsy sir? No thanks, but if you must
23 March 2021
The procedure took place in the last week of March 2021. I met my urology consultant for the first time (it had been two years since he took me on). Nice to put a face to the… well, er, nothing. He said he’d try and do the kidney operation in April/May (update: he didn’t).
I was given local aesthetic, and told 10–12 core samples would be taken. AB (antibiotics) given by injection beforehand, and AB tablets given afterwards to avoid septic infection.
I signed the consent form, lay on my side and awaited the intrusion, performed by a lovely, polite lady doctor. If you like things in your back passage you’ll be ok. I can now confirm that I don’t. Particularly if they are bitey.
A nurse sat next to me, who tried to take my mind off things, but it didn’t work as nothing can prepare you for the shear embarrassment of the ordeal, or the pain when the device takes a snippet from your prostate now and again. The sensation could be described as having a pair of scissors snip at your tongue.
You do wonder why people choose these jobs, it can’t be nice, or maybe they don’t mind. But thank goodness they DO choose these jobs.
So again, it’s a wait for the results. If it is cancer they may do a CT scan and bone scan to determine if it has spread into other parts of my body.
Dem bones, dem bones dem, dry bones
14 April 2021
I rang the hospital to find out whether or not I had indeed got cancer. I was told I had cancer on right hand side of prostate and it was pressing on the outside. They were not sure if it has spread.
If it has not spread they give ‘radical treatment’ which is either surgery or radiotherapy. If it has spread I assume it will be chemo and high time I went church.
By the way, if you are ever diagnosed with cancer you can get prescriptions free (at time of writing this). Ask your GP, if you can get hold of them that is. Other offers may apply.
A bone scan took place immediately. I was injected with a radioactive tracer. You have to wait for the tracer to spread around the body, so this can be a long day in hospital. I’d forgotten to bring either my wallet or phone, so couldn’t get anything to eat or drink, or read. It’s a good job I was Thumb Twiddling Champion 1988 and hadn’t lost the knack.
I also got an appointment for a CAT scan (of the organs) later in April, for the thorax, abdomen and pelvis.
You do have cancer
15 Aril 2021
My cancer consultant rang to further discuss the results of the March MRI scan.
The cancer was mid to high risk. The bone scan was ok, no signs of spreading (phew).
I was 20 years below the median age for prostate cancer. And this was obvious to me whenever I attended hospital. The other men were always in their 60s and 70s upwards.
My father also had prostate cancer. He took hormone therapy but eventually the cancer spread and got the better of him.
Now I have to wait for the scan of the thorax, abdomen and pelvis. The consult thinks that scan will be ok.
I now have two options:
OPTION 1: Remove cancer. But challenging due to my weight. Because they lay you down on your back, and tilt you back (head down) they don’t want your stomach weight resting on your lungs. They won’t operate unless I hit a target weight.
It would be robotic surgery, requiring a catheter for 2 weeks afterward. Risks include bleeding; infection; structure damage to stomach; leaking urine, erection issues.
In my case, cancer is about 1mm away from nerves controlling erection and will probably mean I wont get erections. He said viagra may help, or some sort of self administered injection. Ew.
OPTION 2: Hormone and radiotherapy treatment.
Hormone treatment (HT) stops testosterone, which the cancer thrives off. It should prevent the tumour from growing. It's given 3–4 months before radiotherapy via tablets and probably a year after the radiotherapy via injection every 12 weeks. This will temporarily make getting an erection difficult (notice I didn't say harder). Oh give me a break! Also, men's penises can shrink by 28% on HT, that's almost a third!
Radiotherapy lasts for 7 weeks. This is targeted radiation to shrink the tumour.
If the operation isn’t successful, you can have radiotherapy therapy after, but you can’t have radiation therapy and then an operation (the consultant said it’s too dangerous).
CONCLUSION: Wait for next scan results.
It’s either weight loss or radiation therapy. Radiation is an awful thing, I preferred the operation, so that’s what I opted for.
Still no news on when the kidney operation would take place (by the way, I didn’t need to lose weight for that one).
What are the scores on the doors?
14 June 2021
I received another PSA test, the result of which (when it eventually came back) was raised a little.
I also got the results from the organs scan (thorax, abdomen and pelvis), it was all clear (phew, again!).
There were a couple of nodules in my lungs but the consultant said it was nothing to worry about. No cancer showing anywhere.
Unforeseen circumstances
21 June 2021
I received another preAMS in June 2021 for a kidney operation, however two days before the operation was due in late July they cancelled it again. They claimed I’d tested positive for the Wuhans during a drive through test a few days before. I protested and said I felt absolutely fine, no cough or cold. It made no difference. Out of curiosity I been testing myself and all tests were negative.
A subsequent letter from the consultant said that ‘due to unforeseen circumstances’ the operation has been cancelled, and they will inform me of a new date as soon as possible.
By August 2021 I began to have the symptoms of passing another kidney stone, this time in the left ureter. The symptoms I’d get, apart from pain in that area, would be tiredness and blood in urine. Just so ya know.
Hello, is it me you're looking for?
2 November 2021
I was still high and dry, I’d not heard from anyone about anything. I decided to go to a walk-in centre for a blood test only to be told I have to make an appointment because of the Wuhans. So I said 'please make me an appointment'. She said she can’t, and I have to go away and ring a specific number. I did this, and it just says ‘all our call handlers are busy ring back later’. I gave up and rang the GP surgery who booked me in for a weeks time. Last time I take the initiative.
I received the results of that November 2021 PSA test in June 2022, seven months later. It was 17.2
I attended another PreAMS (kidney op related) in November, as every few months you need to keep doing this apparently. It took them ten minutes to even find me in their records, and another ten minutes to determine what tests I needed done. I said I was told to bring a urine sample so I did. The nurse said it wasn’t needed but went to check anyway. Turns out it was needed.
By May 2022 I still hadn’t heard anything from anyone. It had been a year since my cancer diagnosis. I contacted the hospital and GP to no effect. I wrote a letter to my GP to the effect that I had been left for along time and was concerned the cancer might have spread by now. There was no reply.
I then contacted PALS to make a similar complaint. To their credit they got things moving again by mid June 2022. This included another PSA test and an appointment to see the cancer consultant at hospital.
Mr Magoo
27 June 2022
A fourth PSA test revealed it was now at 20.1, ten times higher than it should be. This figure usually means the cancer has spread to the organs.
A MRI bone scan was organised for late August but luckily one came through for 1st July. I got injected with radioactive stuff again, and then a dye of some sort. That injection made me feel like I was having a panic attack, a hot flush and wanting to be sick. You might have better luck.
Meanwhile I attended yet another kidney op PreAMS. The nurses blamed the pandemic for the delay in my treatment. I asked what my PSA was in November (as I was never told), it was 17.2. So they knew and yet I didn’t get the appointment I was promised, and neither did my GP surgery do anything.
The nurse thought I had already had two kidney operations. I told her I had not had any. Mr Magoo (Google it young readers) must have been typing up my notes at some point.
The good news is, Mr Magoo made another appointment for a kidney operation for me, 15 July 2022. Fingers crossed, this time it would take place. Just hoping he doesn’t perform the operation.
Winner winner chicken dinner
15 July 2022
This was a key event in history, for it was the day The Rock and me parted ways. Almost. We had grown weary of each other over the years.
Of course I was concerned about being ‘put under’…. would I wake again? That was my biggest fear. That and what pyjama’s I’d take to hospital. I didn't own any.
Once there, the chap next to me had been admitted to remove polyps from his sinuses, I heard the doctors describe the procedure. They insert a camera with small jaws on the end up his nose and around his eyes etc, and chomp away at the polyps. Yuck.
I talked to my doctor who said the cancer hadn’t spread from the prostate (which is lucky given the PSA level), but it could just relate to having a large prostate.
They said the kidney/bladder scans showed two stones stuck in a tube, some in the bladder, and the left kidney (which has the stag stone) has shrunk and will never regain full functionality (but that’s fine apparently).
I was wheeled down to the anaesthetist, a very nice bloke who reassured me everything would be ok, before giving me the best sleep I’d had in years.
Before I knew it, 5 hours later, I was in the wakey wakey room, feeling sooooo relaxed and happy. No pain (thank you painkillers). Everything was calm and quiet. I could quite happily have stayed there for a few days.
Back on the ward the guy who had come in to have his sinus polyps removed had caught sepsis after the operation and was carted off.
A doctor informed me my operation was not a complete success, in that they couldn’t remove all of The Rock from the kidney. They did enter my back to blast it, and also ventured up my manhood to get at the smaller bladder and tube stones (thank goodness I was asleep). Unfortunately this temporarily messed up my ability to pee normally, I had to wear a catheter, which made me sore and kept blocking up with debris (blood and flesh). Nice eh? I also had a stent in the tube from left kidney to bladder to help bypass the stuck smaller stone allowing the kidney to drain properly. That stent would be taken out sometime later.
Later that day they removed the catheter. The idea being that if you can wee without it, you can go home. I couldn’t. And I was in agony for hours, wishing for them to put the catheter back in.
Apparently they tape your eyelids shut during the operation, and this made an eyelash come lose and lodge around the back of my eye. When I came around, this was the only real complaint I had, as it was sooooo irritating. A nurse got her iPhone torch and lifted my eyelid to try and find it. She caught a glimpse of it and applied some liquid and ointment but these did not work.
Eventually I was sent to another department for see an eye specialist, where I had to wait before being seen, with a painfully full bladder. I was seen and the doctor administered some sort of cool gel into my eye. But like The Rock, the eyelash wanted to stay with me.
Dinner consisted of a withered chicken breast, a potato and one thin slice of circular diced carrot. When I asked why one slice of carrot, the nurse said it was policy (yes, she was serious). However when I looked under the chicken breast I found another. Well pleased.
In the evening I was fitted with a new catheter and in the morning I was sent home with it in place for a couple of weeks, and some more eye ointment. Having a catheter was not nice, any movement made it uncomfortable. I spent the entire time, apart from one badly judged trip to the shops) at home. The district nurses coming out now and again to check on me, replace things and eventually whip it out.
From that day to this (December 2023) my kidney function has never picked up.
Rolling Stones reunion tour
8 September 2022
So I have another PreAMS for the a potential operation to remove the small kidney stone in my left ureter, and to remove the stent. They are going to leave what remained of The Rock and keep an eye on him. The operation took place 20th September but they had to re-insert another stent in the same place, because the tube from kidney to bladder was inflamed.
After another induced sleep, I once again found myself in the wakey wakey room, confused and giggling away to myself (anaesthetic?) and being encouraged to come around by a nurse. “Turn to your right please” (so I turned to my left). She was trying to tuck me in tight and prevent me from wriggling out of bed I suppose. “Eeee it’s like being tucked in by your mum when you were a kid isn’t it?” I giggled. Hope she knew I didn't mean any offence!
Home again with a catheter. Kidney function at 30%.
I’d been given medicines to help control the uric acid levels: a disgusting citric and salt liquid to take three times a day, and some tablets.
My fifth PSA result was a staggering 27.7. Also not good.
The catheter was removed in late September, by a district nurse. However I then had to go into hospital for the stent removal….
Three nurses and a baby
30 September 2022
Stent removal day. I entered the cosy little hospital room to find three females waiting. A big nurse, a slender nurse and a young trainee who wanted to watch.
I lay down, trousers and boxers dropped, while big nurse held my manhood and inserted a camera with jaws on the end. Reminded me of sinus polyp man. I’d have preferred the camera up my nose like he did.
There was some warning that this might hurt as it went through the prostate but by then she had done it already and I had a face like I’d sucked a lemon.
Slowly but surely she put Dyno Rod to shame. The student looked on taking notes, with slim nurse watching the whole sordid affair on the monitor. “Do you want to watch?” she asked. “No you’re alright” I replied.
At last sighting of the stent was achieved, and before you knew it big nurse had grabbed it and pulled it out.
With my dignity in tatters, I went home.
I'm a laydeeeee
17 October 2021
Although I’d lost weight, my cancer consultant thought it best that I should undergo hormone and radiation therapy, instead of an operation on the prostate. The reason being, my prostate and other innards had been through so much of late.
I was given the first injection of ProStap3 hormone therapy 17 October. With further injections every 12 weeks. I was also given 30 days of hormone pills. My desk at home was beginning to resemble a pharmacy.
Nothing much changed at first but about 3 weeks in I was half the man I used to be, but twice the size. I began to put on a lot of weight, and had very tender nips, hot flushes, aching muscles and joints, and tremendous lethargy and dizziness.
As the weeks rolled on, due to the dizzy sensations and weak legs, my balance was rubbish, often stumbling, I collapsed three times barely missing a table with my head on one such occasion. Luckily sustaining nothing more than a bruised arm. I also experienced retching, as though to be sick. Any physical exertion made things exponentially worse. Shorter dog walks were needed, for now.
The purpose of this treatment is to lower testosterone production, so the cancer cannot feed off the testosterone.
Keep your voice down
28 November 2022
At a meeting with a new radiotherapy/cancer consultant, we discussed what lay ahead.
I could have a gel inserted to help protect my bowels from the radiation treatment. Yes please.
Another PSA test would be done in January 2023.
I could come off hormone injections and use lesser powerful tablets instead, due to the side effects I was experiencing. I decided to give the injections another go. I want to kill this cancer.
There would be 4 weeks of radiation treatment, each day except weekends.
I then had to go to the crowded hospital pharmacy to pick up some enemas. When I finally got the front of the queue the young girl popped off to fetch the medication. Upon her return she said, rather loudly I thought, “You know how to use these? Break the end off, insert into your back passage and empty the content”. “Shhh, yes I know thanks” I replied, gathering up a truck load of enemas and making haste.
One enema should be taken prior to each radiation session. They want the bowel empty and the bladder full for each session. The bowel needs to be as small an area as possible, and the bladder is like a balloon. When empty, the bladder flops over the prostate, and when full it raises off the prostate, keeping it out of the way of the radiation treatment.
That’s all for today class.
Giddy up
12 January 2023
I had my second ProStap3 injection 10 January. The effects of the first had started to wane, but as before, a few weeks into this new injection and I was a wreck again.
I then had a PreAMS for the gel insertion procedure, and a PSA test.
On the 12 January I arrived at my second home (hospital) for the gel insertion procedure. This is inserted between your prostate and bowel to help protect the bowel from the radiation.
The nurse looked me up and down, and said you’re tall aren’t you (6”1”). I knew her game: “You’re trying to figure out how much horse tranquilliser to give me aren’t you?”, I said.
The results of my sixth PSA test were given to me, 0.86. “What? Are you sure that’s right” I said trying to hold back the tears of relief. “Yes”, the nurse said. I can’t tell you how pleased I was, maybe all the suffering from the hormone therapy was worth it after all. 27.7 down to 0.86.
Given one of those sexy gowns I’d become oh so familiar with over the last few years, I was summoned to the operating table. They put my legs in stirrups as though I was about to give birth.
A nurse covered and then grabbed my tackle and lifted it out the way onto my tummy. “Shouldn’t we at least have dinner first?” I quipped nervously.
Just then, a lighting rig resembling that of Wembley football stadium was switched on, illuminating my Watford gap.
Another nurse disappeared out of view between the stirrups, and administered a local anaesthetic in my perineum. Ouch.
She then splurged on some cold lubricant, smearing it over my back passage. Oh no, not this again. In went a camera, as I staved off singing the national anthem.
“We have a good clear picture” she said. “Lucky you” I thought.
“You may feel the camera moving around from time to time”. She wasn’t wrong.
Again the nurse by my side tried to make light chit chat. It worked until the needles containing the gel went in the perineum. 'Sucking a lemon' face strikes again.
The work has to be precise. The gel has to fit a certain area, not move about out of that area, and there is a risk of the needle puncturing the bowel.
I noticed a change in voices. They started whispering down there at the end of the bed, out of sight between my legs. “Is everything ok?” I enquired. “Yes” came the reply, “everything is fine, it went well”.
The lady doctor was great, very professional and kind. I later received a letter from her about the day, and how well it went and wishing me the best for the future.
And with that I was sent back to the recovery room and awaited the best cup of coffee and buttered toast ever. “You’re a star!” I told the nurse who delivered it.
A week or so later they scanned me to make sure the gel was still in place, and it was. I’m told the gel will disintegrate by 6 months, causing no harm.
Say cheese
18 January 2023
By mid January 2023 I had to go for my tattoos, to be marked up for radiation therapy. So I had to take an enema and fill my bladder before laying down on something similar to an MRI machine.
The two nurses put my feet in what seemed like runner starting blocks and a wedge under my back, then after scanning the prostate figured out where to mark me.
They made three tiny black spots, real tattoos, one on each hip and the other above my manhood. Apparently when the time comes, a machine will line up with these marks each session and spin around me (as I’m laying down) and fire radiation at those tattoo markings.
Afterwards they asked to take my picture for their records, I was pleased they considered me so good looking they had to have a picture of me hung up in the office. I gave them my best pose.
Radiation starts Monday 6 February, for 20 days.
Need enema before each radiation session, can do this at home before I leave.
Need full bladder each time too, so have to drink 500ml 15 mins before arrival.
Baths can’t be too hot. It makes the burning worse from the radiation therapy.
No bubble bath in baths. Was peeved though as I’d just bough some bubble bath.
Can get a car park pass, but finding a spot might still be impossible. It was.
Symptoms from radiation therapy:
– Symptoms may not start until week 2 or 3
– Up more in the night to urinate.
– May get diarrhoea (over counter meds ok to take)
– May get cystitis symptoms
– Tender skin where markings are, due to radiation (heat).- Risk of future cancer…
I’ll let you know how it goes.
Men, oh pause
2 February 2023
The hot flushes have arrived in force. Whereas I used to get 1 or two in 24 hours, I’m now getting about 15 to 20.
I do sympathise with women who suffer with this at a certain age. It’s not like, “Oh I feel rather warm, I’ll take my jumper off”, more like “hell fire and damnation I’m burning up from within, and feel sick, I need to strip off NOW! Where’s the nearest Norwegian ice plunge pool when you need one!”. Oh yeah, Norway.
But my duvet has provided me with more exercise than anything else, what with throwing them off and pulling them back again on all night.
So I got a rather nifty rechargeable, fold-away, pocket fan from a certain well known online store. It didn’t cost a fortune either, and with a free week of deliveries offered to me, and good reviews, I took the plunge. It’s a good fan and I’m glad I got it. I can take with me wherever I go and push back the flames of Hades should they beckon.
One day I should be off the hormones, and I should receive checkups after the radiation therapy to ensure the cancer doesn’t come back, or that I don’t develop a secondary cancer from the radiation. And one day, I can have a bubble bath again.
Second thoughts?
6 February 2023
Today I had the first radiation treatment.
Apparently I have to take a Wuhan test every Monday and Thursday, which I wasn’t told, but they will still treat if test positive.
A drop of the trousers was requested, and I lay down on what resembled an MRI machine. They scanned my bladder for fullness. Although I had drank the required amount of water at the required time, my bladder wasn’t full enough so had to go back to the waiting room, drink more, and wait.
So I went to get a cup from the cup dispenser. As usual, three cups came away into my hand so I thought I’d be clever and shove the other two back, only for the whole dispenser fall off the wall and into my arms. Thank heavens no one was around to see. I noticed the bracket on the wall and thought “ah, it just slides over this” but could I get it back on the wall? Nope. During all this a nurse walked by, saw what I was doing but said nothing. It must be a regular occurrence, I thought. One more try, and it stayed put, phew.
As I was settling into a sleepy wait, a nurse came, grabbed a chair and walked off with it. Then came back and asked me to go and sit on said chair, because they have a Wuhan infected patient coming in. He then erected a folding screen across the waiting area where I was previously sat, and donned a face visor , as though this would confuse the virus and stop it in it’s tracks.
I felt like a naughty schoolboy sat out there in the corridor, but eventually my time came again. Bladder full, another drop of the trousers was requested. The process took about 5 minutes, there was some whirring noises, and that was it. No getting into a gown or anything! Yes!
Earlier that morning I had begun to have second thoughts, but what are my options? Live with the cancer and wait for it to get me good and proper? Or risk the side effects from radiation treatment? I’ll see what, if any, side effects I get from this treatment and then re-assess things.
During the night, and the following day too, I felt occasional, sharp stinging sensations from where the prostate is. Hmmmm.
End of week one
12 February 2023
Well, am I glad that week is over. Fed up of driving to and fro to hospital, and hopefully the weekend will bring some respite to my body.
Still in two minds whether to continue or not.
Anyway, peeing has become increasingly difficult and slow, and I’ve also stomach ache quite regularly. I’ve also a very intense pain in my right hip (this almost cleared up by Sunday evening).
Almost right away I noticed occasional sharp pains in the prostate area, and after a couple of sessions it was becoming slightly harder to urinate, especially at night. I also noticed some diarrhoea.
At the hospital, wary of the frisky cup dispenser, I pulled a cup free (yes, three came out again). I noticed others had also pulled multiple cups out and had made a special tower out of them next to the dispenser, instead of trying to put them back. If only I had thought of that Monday.
As I sat waiting the other day, there was an elderly couple already sat opposite. The wife was looking at me. I like to dress somewhat smartly, and obviously made an impression as I heard her whisper to her husband “We will smarten you up tomorrow you look a mess.” To be fair, he did look a mess. I don’t think she got her way because the next day he’d just changed his t-shirt from black to white.
Yesterday I was told that a nurse would see me every Wednesday to catch up on things, a routine thing. So after treatment I went to see her, “Oh you’re wearing Sauvage!” she exclaimed, “I like that”. I thought my aftershave would have worn off by then but she’d caught a whiff as I passed her.
I explained my hormone therapy side effects (dizziness, sick, weak etc). She said this could be due to the hormone injection making my blood pressure drop, so I’m going to have to start monitoring that. The alternative manufacturer injection would likely give similarly side effects but could be worth a try.
We come in pieces
13 February 2023
Pain in right hip almost gone, no idea what’s going on there and neither does the NHS.
Not much to report health-wise, just beginning the second week of radiation treatment. It’s a 40+ minute drive to hospital, sometimes more due to traffic. I’ve figured out two alternate routes to avoid any traffic jams and used one of them this morning. However, because I’ve got to drink lots of water before each treatment, I’m bursting to pee on the way home even if I’ve already been at hospital, thanks to the radiation agitating the prostate. So a pitstop is usually required and I’ve found places I can stop if need be.
Trouble is, one route passes two fish and chip shops. Oh the temptation (no, I NEVER had any, honest guv).
And now for something completely different. All this talk of UFO’s in the media got me thinking, if any alien thinks it can experiment on me and probe me, it’s got another think coming. The NHS have done enough of that thank you very much. Meanwhile the governments of the world are shooting alleged UFO's from the skies. Can the world get any more bizarre? (Yup).
Ooooo, we're half way there, oooo living on a prayer
17 February 2023
So I’m just over halfway through the radiation treatment.
I recall a nurse telling me, at the start of this treatment, “you might as well move into the hospital”. She was referring to the fact that I have to go everyday. She was right, I should have moved in.
Symptoms? It’s harder to pee, and ‘stools’ are much softer, and that pain in my right hip which no one seems to care about. I was given tablets to help me pee, with the disclaimer that they cause dizziness, just what I need given I’m already dizzy from the hormone therapy. These are drops in blood pressure. Not good.
I took one tablet a few nights ago, it did help me pee more easily but the following day I was a wreck, so will hold off on taking any more unless absolutely necessary.
I’m not seeing the nurse this Wednesday as it’s “half term” (schools). I don’t know why they won’t let me see another? There are plenty of them knocking around the joint.
It could be worse, and at present I’m thankful for that because if you suffer badly now, during treatment, the likelihood of future complications is higher. According to the gumf.
See Biscuit
1 March 2023
Two more days of zapping left. So far, so good considering. Yes my prostate is the size of New York City and making it very difficult to pee but things could be worse. The old fellas in the waiting room often remind me of that with their horrific stories of bladder and bowel problems they seem so keen to tell me about. Mind you, I can talk.
Others seem to enjoy going to hospital, as though it’s something to do. A day out. Sod that. One man told me he goes two hours early, to sit, chat and eat. And get a car parking space. Another old chap who is having chemotherapy got a fine for parking his car in the wrong place. It’s not fair really, the car parks are always full, the staff use them too, and the one for the cancer centre is tiny. Once you get to hospital you can’t always park.
I saw a nurse today and she said my prostate would get worse about 2 weeks after treatment, for about 6 weeks. Well, that was never mentioned in any of the gumf they gave me at the start of all this. They waited until the end of the radiation treatment to tell me that nugget. Obviously the lovely radiation still, well, radioacting.
Then things should settle. She will ring me a few days after treatment to discuss an aftercare plan. She said because of my young age and the type of cancer it was (high Gleason score) I should probably ask my consultant for a scan in the future just to make sure. They don’t like giving lots of scans because of the, er, radiation! And heaven knows I’ve had plenty of scans over the last three years.
She recommended I stop taking the ‘pills to pee’ due to the dizziness.
She also basically admitted that it’s just wait and see now. There’s no telling if the cancer has come back without a scan. Yes, they will check my PSA and ask for any new symptoms (which might be too late, surely?!). But as I pointed out, and she agreed, the PSA isn’t reliable because I will still be on hormone therapy (HT) for a year after treatment (again, because of the type of cancer) which in itself will keep the PSA low, masking any cancer related PSA rises. But the HT should keep it at bay. Some people have to take HT for the rest of their life. I wonder if I will be one of them, due to the cancer type? I hope not. I hate having breasts.
It's worth noting here, that when I did stop HT in September 2023 (almost a year after starting it) that my peeing habits changed a month or two later. I needed to go a lot more than before. I was worried the cancer might be growing, or at least the prostate was getting even bigger - without the next HT injection? I told my consultant but of course the only remedy they give is to take another tablet for that.
A lady often accompanies her husband to the same department as I go to, and they sit and have a picnic. Today was roast beef sandwiches. That wasn’t fair, anyone who knows me knows I love beef. I started to drool. She said she would make me some next time, bless her.
On my way out of hospital I passed a used and abandoned tea trolly and spied some lovely biscuits which remained. I’ve no idea how they ended up in my pocket.
Good luck old chap
3 March 2023
I finished my radiation therapy stint Friday 3 March. Basically it’s wait and see now.
Peeing has definitely got harder to do, so I had to take some more of the pee pills they gave me, but which make me even dizzier than usual.
Nurse rang me a few days ago. She is sending me blood tests for PSA and kidney function (which is still low at 30%) to be done in June. I’ll see the cancer consultant again in three months. They want me to remain on hormone therapy for another year, not sure if I can do that… they make me feel terrible. And I hate not having a sex drive. Not that I drive anywhere.
Can’t ride my mountain bike because it would aggravate the prostate even more.
She told me not to take any more pee pills because they are making me dizzy and probably bothering the kidneys too much. She said if I can’t pee, I'll have to go to A&E. That’ll be fun sitting there for three hours with my legs crossed.
Celebrity Shingles
5 April 2023
About a week ago I had a very itchy shoulder blade, which soon developed into a bad pain which spread under my right arm and chest. A week later a rash appeared.
Not been feeling stressed or anything, so this is likely my immune system having been weakened by the radiotherapy treatment. Great. Nights have been rather sleepless due to the pain.
I saw the GP this morning and now have some tablets to take five times a day.
Shingles occurs in people with compromised immune systems, radiation therapy being one such cause. It can be a recurring event when you have had radiation therapy. They never mentioned that in their gumf. I would catch it again in November 2023 but without a rash.
I use the word 'celebrity' lightly, as Holly Willoughby has apparently got shingles too, and this 'coincided' with the government mumbling on about bringing out a shingles vaccine. Yum. Given their recent track record regarding vaccines I’d rather have shingles.
A different me
23 May 2023
It’s so strange to see a different me in the mirror. The loss of body hair is quite dramatic. Just as long as it doesn’t fall off my head too.
I’ve also started getting cold chills. The cold seems to come from deep within, and I develop goosebumps all over. I’ve also a restless feeling most of the time, like restless legs syndrome but all over my body. It makes trying to sleep almost impossible.
Update 23 May 2023
I’ve developed a bronchial type cough, so maybe a chest infection – also from low immunity? Simply will not go away. Will get it checked out by the GP.
This turned out to be pneumonia, which was treated with antibiotics.
Update 21 June 2023
Saw GP a while ago, took a sputum sample, ordered a chest x-ray and lots of blood tests. Sample and X-ray allegedly ok (never heard anything back). Bloods basically ok, kidney function still low but stable, creeping towards being diabetic because of the hormone treatment making me fatter, but best of all was my PSA which is now at 0.15.
Still have the cough and phlegm, no treatment or further investigation being done.
I was supposed to see my oncologist this month (3 months after treatment) but have no appointment. I rang the hospital but was told I’d just have to wait to receive one sometime. I really need to discuss quite a few things with him. He eventually saw me in, wait for it… September.
My health, well I have been feeling absolutely energy-less for about a month, just can’t shake it. Wobbly on my feet. Dizzy.
Due my 4th hormone jab next week. I want to make it my last but I know they want me to have two more after this.
I'm getting so fed up of not being well.
Good news and, well, the other type of news
28 November 2023
My last three PSA readings were:
5th June 2023 – 0.15 PSA
18 Sept 2023 – 0.06
17 Oct 2023 – 0.07
The highest was 27.7, around ten times higher than it should be. A figure which would indicate the cancer had spread into the organs and bones.
The hormone therapy (HT) has certainly arrested the growth of the cancer, at least according to the PSA tests. Such a relief. Finally got the pneumonia sorted, antibiotics.
I had my 5th HT injection September 2023. It’s been a nightmare for me with side effects so my consultant agreed I could come off it and monitor my PSA to see what the cancer does.
He said:
- The reason why they kept me on HT for so long was the high risk cancer type and high PSA.
- PSA will fluctuate after I stop the HT. But as long as it doesn't consistently go up, I don't need to worry about it. Next PSA is in January 2024 and I will see him again. He said any PSA below 2 is good.
- HT effects will carry on for a number of months, young men (me, apparently!) have a quick testosterone recovery time.
My emotions, by this point, had gone crazy, I simply wasn’t me any more. My friends and family all noticed the severe change. It must be hard for people to see the real me beneath all of this, and I don't blame them.
I had a slight bout of shingles again in November, around the same area. I wonder if it is being brought on by depression/being upset? There was no rash with it this time, and after a bit of searching online it could be 'zoster sine herpete' (ZSH), but it is not common. Shingles without a rash.
Well hopefully the HT will be out of my system by early 2024 and I can start returning to normal. Still overweight but steadily knocking a few kgs off. Still have extreme hot flushes. Still dizzy and tired at times BUT much better with these. Still forgetful and unable to concentrate normally.
Er, what's up doc?
12 January 2024
So at end of November last year I started to notice a change in my peeing habits. I started to go a lot more, and sometimes it was very urgent without warning. Was kind of worried about the cancer. The last HT injection was September 2023, was my prostate/cancer complaining?
The only other thing I had done differently was from November 2023 embark on a 5 mile walk most days, at marching pace, in order to get fit and lose weight. Whether that aggravated the prostate somehow, I've no idea. But I do know that an aggravated/enlarged prostate can cause these symptoms.
I had a UTI test done and was sent some antibiotics to deal with it, however after finishing the course my symptoms continued.
I went to see the GP after New Years and got blood taken for kidney function, and PSA. Luckily the PSA was still low (0.06) so it seems like the cancer hasn't spread (although I have since read that it can still spread with a low PSA). So confusing. I must admit to feeling rubbish. Dizzy, tired. I was prescribed some pills to help slow down the frequency of urinating, a week after starting that course I''m not sure if they helping yet. They are a different brand to those which I tried some time ago, and had to stop them due to side effects. I don't seem to get strong side effects with these new ones.
So, my PSA is good considering I stopped the hormone therapy in September 2023, but remember that HT is still in my system for a few months yet. I'm going to get another done soon and see my consultant in early February.
Now what?
6 February 2024
Saw my consultant.
PSA is still low – 0.05
PSA test every 4 months now, should be automatic appointments. After 2 yrs then PSA test is done every 6 months. Gave me a PSA form for four months time.
Could take up to a year for the HT to get out of my body and the testosterone to come back.
Libido should come back (and it is doing).
Excess fat should go.
Flushes should go.
Note: The first five years after radiation treatment is the time to be watchful of any cancer occurring from that treatment. I am going to ask for at least one scan sometime to check everything is ok.
Itchy and Scratchy
24 February 2024
Again I have the sensation of shingles in the exact same place I actually had shingles last year. The insane itching without a rash. I've had it a couple of days now. Going through a tough time again, maybe that's something to do with it?
April 2023 - Shingles
October 2023 - Shingles with less of a rash but just as itchy, some pain
February 2024 - Shingles without rash, no pain
So almost every 5 months? All in the same place (right shoulder blade, right side of back and under right arm).
Remember all this is just for information, in case you go through this treatment.
Schwing
April 2024
GP will try me on different pills to regulate my visits to pee. My libido has returned (phew, I missed it so much), and my lust for life too. I'm getting slimmer and fitter too. Next PSA text will be in June.