Welcome to my latest blog. The title could be a modern twist on a Groucho joke – but it’s true – diagnosed in June and still awaiting final treatment – looks like this won’t happen until next year but I’m getting ahead of myself . . . . . I’ve made this blog as a kind of history of my prostate cancer – from initial tests and procedures, diagnosis and then on to treatment. I’ve done this because it’s a bit cathartic for me; writing it all down but also as a diary so I can remember what happened and when. I’m publishing away from my main blog trefin.vivatek.co.uk, as I don’t want to burden readers with all my medical details but also, I hope, to give some sort of help to guys who are now, unfortunately travelling down this same road.
I am not going to hold back. I think guys will want to know what’s in store for them and their friends and family may also want to understand what’s going on. This is a personal record and it’s what happened or is happening to me – so don’t expect the same to happen to you – all blokes are different. I realise that most men, if not nearly all men, will have prostate cancer . . . . eventually. And most men will go to their grave with prostate cancer but not because of it! That’s just a fact of life. The good news is that most cancers can be treated and even eradicated. Sometimes the cancer is treated but the patient still has some cancer cells left. His life has been extended because of the treatment and something else will get him in the end. So a diagnosis is not a death sentence. It’s not that long ago that there were no reliable tests for this type of cancer – guys that had it, normally would turn up at their GPs because it had spread and attacked their bones . . .the only solution then was to cut their balls off and extend their life by a bit. Thankfully, that’s not the main solution now . . .although in poorer countries with no access to medicine . . .it still is.
My story probably goes back some 20 years – I had three bouts of prostatitis. A strange illness. It felt like a golf ball was stuck up the rectum. The ache would come and go. Worse when sitting, driving or not active. Tests were done. The DRE (digital rectal exam – nothing IT about this, just the GPs middle digit!), months of antibiotics, even a cystoscopy (like an endoscope but thinner and up the urethra!!) and rough prostate massage . . .nothing was found. No infection and PSA was incredibly low. PSA is prostate specific antigen – a protein inside the prostate that should stay there. If found in the blood in could be signs of an infection or cancer. Since then, I’ve never had any more problems and no more PSA tests – these aren’t done routinely, men over 50 can request them and should annually.
On to December 2020. I started to think that something was not quite right in the downstairs department. My prostate was aching and other niggles, such as erections being harder to obtain and maintain. Semen volume was greatly reduced – I wrote to my GP but this was Covid peak and consultations there were none. In February, I swapped blood pressure pills and this provoked a blood test to ensure the new pills weren’t causing any problems. The nurse read out the results over the phone . . .liver OK, kidney function OK, PSA 28…..What? My heart missed a beat. I already knew about PSA – do most men?? An elevated amount is like 2 or 3 or 4 but 28?? Statistically this points to 90% chance of prostate cancer. Another test was done about 2 weeks later = 28.1. Oh dear. I could almost see that guy in the black cloak and huge scythe standing behind me.
What to do next? Well, my GP said the threshold was 20 – he has to refer me to urology at the hospital. And now this is where we all get angry, cos it took 45 days before I saw a consultant. I could and should insert a long rant about the state of the nation and the NHS – a decade of pretty much raping it by the UK government, underfunding, understaffing . . . . .Brexit (10% of all NHS staff came from the EU….most went back…they felt unwelcomed . . .) . . .and now Covid! I used to joke with friends and family – just don’t get ill.
Even now, as I’m many months on, it still brings back chills. I know we moved to West Wales to be isolated but there are consequences – this consultation was in a different county – over an hour’s drive away. Then an hour’s wait in a very busy and chaotic hospital outpatient’s centre. After checking that I didn’t seem to have Covid, I met the urologist. He was amazed I’d not had a PSA check in the past few years and also amazed that I’d had to wait 45 days . . .he gave me the DRE and said that it didn’t feel right. The prostate….thru the rectum . . .should feel smooth and soft….any lumps or stiffness could mean problems. He said the next move would be an MRI scan. Which was scheduled for 2 weeks and would be at the nearer Withybush hospital in Haverfordwest – just half an hour away. Good oh.
Had the scan. It was at 6 pm. These services run for 12 hrs/day – 8 til 8. You may know that I’m a physicist and this makes me a bit of a nerd when it comes to stuff like radioactivity and scans. . . I could really bore you with how this stuff works but basically, there’s no radiation, just high powered magnets (1.5 Teslas) and a strong radio signal. It causes all your little molecular magnets in you body to line up and then lets em return . . .this gives off a wee bit of energy which the scanner picks up – a very slow and very noisy process. I had to wear T-shirt and shorts and they were the only metal free garments I possess. Despite all this physics know-how, I was still very anxious . . and this would be the overriding theme for months and months – the just not knowing, just having to wait for the next letter (which often would arrive after the process), the next phone call, always having to have my phone on me day and night. That was the killing part. Now that I’ve started down the road of treatment, I feel mightily relieved. I know we’re not there yet but it’s a start and I’ve months of not having to wait or do anything with hospitals. Time for a break . . .some images and links . . .
https://prostatecanceruk.org/prostate-information/prostate-tests/mri-scan a good reference site for all things prostate cancer related – my go-to place for info, T-shirts! And a wonderful forum where you can chat with other patients etc
Right, so, I’ve had the MRI scan in the mobile unit and now have the anguish of the wait . . .eventually, after two weeks, I get a call from the chief urologist – “you have a suspicious prostate” – OMG, I had visions of the prostate with a balaclava and holding up a bank . . .”we need to get you in for a biopsy” . . .oh, can I have a trans perineal biopsy? ….”Ah, no, that requires far more theatre time and we can’t do it at the moment . . .with Covid . . .” . . .oh, OK…….”I’ll try and get you in within 2 weeks, OK?” . It wasn’t until much later and a request to see my medical records (yes, guys, did you know this? You can formally request em), that I found out what the radiologist had made of my scan . I know that the medics want to keep things simple and not worry or overburden the patient with too many medical terms etc but I really think they should be more straight. I got a copy of the result “showed suspicious prostate in particular at the apex likely T3b disease if confirmed on biopsy”. I’ll come back to that term later. But now for the biospy, which to give them credit was within 2 weeks – 2 pm at my local day surgery clinic at Withybush.
So, what is a biopsy? Generally it’s the only way to truly determine what’s going on in the tissues of the body – by taking small samples of them. Most are simple – a slim needle goes in, takes samples, off you go. The problem with blokes and the prostate is that this wee thing is quite small (walnut and a bit?) and is in a tricky place to get to.
So, there are two types of biopsy – go thru the perineum (area between the anus and scrotum) or thru the rectum . . .
My only option was the TRUS one. Here they give you antibiotics before, during and after the op – this is a pretty invasive procedure – they scan the prostate with an ultrasound probe, numb the area with a local anaesthetic, then fire a biopsy gun into selected parts of the prostate . . . if that doesn’t scare the shit out of you and stir men to go and get their PSA tested, I don’t know what will – oh, wait, yes, I do: let’s show them the whole procedure on YouTube – warning – not for the fainthearted or whilst eating your dinner:
Even though I had done my research and yes, watched that video many times, I was still unprepared for the actual event. My appointment was for 1400 but that was just for the getting in, getting undressed and into that gown, answering loads of questions, filling in forms, signing consent forms, for yes, this is an operation and there are risks – infection – sepsis! Like most people, I don’t like hospitals. I mean they’re for sick people?! What was I doing here? To make things worse, I was the last guy to be “done” and had to wait over two hours . . .watching 3 others go in and come out. I won’t go into detail but the video says it all. Exactly the same. Except I had good nurse/bad nurse – the good one sat opposite me and chatted all the time – distraction and calming, whilst the bad nurse, well, highly skilled and experienced surgeon…did the business. He took 16 samples and I must admit I did feel some of them and he apologised that he couldn’t numb everywhere he was harpooning! There was a bit of blood and then special pants to put on….then go and sit, have cup of tea . . .wait half an hour and then if you can go for a pee successfully, you can go home. And I did. Poor Viv & Toby waiting in the car park from half one until gone five! I was numbed physically and mentally too. I had to expect blood in urine for a few days or more plus blood in semen for weeks. As it turned out I was OK and had little of this thank goodness but ejaculating blood is quite scary if you hadn’t been warned. Results? Could take 4 weeks. FOUR WEEKS? Yep, the samples have to be analysed, graded and reported on . . .meanwhile…..(May 2022)
Scans. Whilst waiting for these results, they had arranged a bone scan. People often ask – why so many scans? I now realise the reasoning in all this . . .if a guy has cancer then it can be just isolated to within the gland, or getting big enough to slightly escape or really big and escaping to other parts of the body – this is the worst case. So they scan for the worst case first – bones, has it gone there? Then if negative, a CT scan, which looks at the softer tissue . . .it all helps them know what they’re dealing with. I had the nuclear bone scan 2 days before seeing the urologist at Glangwilli in Carmarthen. This was another amazing physics event – being injected with a radioactive dye (Technetium 99) – which emits gamma rays. So I got the jab and then was told to go walkabout in Haverfordwest for 3 hours, come back for the scan. Very different from a normal X-ray – here, you are being the emitter and the scanner is taking in your radiation! I took my Geiger tube along, as you do and boy, what a surprise.
Two days after this scan I had the dreaded call to attend Glangwilli hospital again – to get the diagnosis . . . .another 3 hour round trip but this time I only had a brief wait and my consultation was with the chief urologist himself. It was just thirteen minutes long but that was long enough to tell me what I had already come to suspect – sixteen cores were taken. Four out of six on the left hand side were positive, six out of seven on the right hand side were positive and all three out of three in the targeted area were also positive – so 13/16 all positive. They also grade the cores . . .I had a Gleason score of 8 (4 +4) – not good. A high volume and high risk cancer, of the aggressive variety. He gave me a book and filled in some of the pages, explaining that they thought the cancer had spread just outside the prostate capsule and into the right seminal vesicles. He gave me the plan . . .hormone therapy (or chemical castration) followed by radiotherapy, where we would be “the hammer to smash the cancer”, in his exact words. (June 2021)
Want to understand more about the MRI, PIRADS and staging…. excellent webpage here https://radiologyassistant.nl/abdomen/prostate/prostate-cancer-pi-rads-v2
He outlined the scheme of things – he wanted to wait for all the scans to be negative before starting treatment . . .then followed a drive home and much texting/phoning family and friends . . .it’s definite . . .Steve’s got cancer.
This is a long post but then it really has been a rollercoaster of a journey . . .quite a few tears and sad times. My GP did prescribe Diazepam but I rarely took them, my usual anaesthetic normally worked better! I now had a Key Worker, a Clinical Nurse Specialist (CNS) who would be my main contact. He has been terrific. He phoned me the next day and introduced himself and also sent me a letter confirming who he was and how to contact him. He was the one to give me the news that the bone scan was clear . . .and on to the CT some three weeks later . . .yes, it all seemed very spaced out. Covid just added to the stress -don’t go out, don’t mix with people – the last thing you want is to catch Covid or even have to isolate and miss an appointment. The CT was the easiest and quickest – just two minutes. Yes, it really was that quick. Lie down – get an injection . . .in and out of the scanner three times – the third time the contrast injection automatically goes in – bit of a hot flush and then scan again. Right that’s it – off you toddle. All the staff I have met have been absolutely fantastic, yes, all of them. I tried to take a few presents, like chocolates – all very welcome. The CT scanning team said they get through forty patients a day! Goodness.
Luckily, the CT scan came back a week later – just a verbal note from my CNS – my GP emailed me the actual results some time later, which was nice. The report said it couldn’t find any cancer spread, which was good . . .so now onto the PSMA PET scan. https://prostatecanceruk.org/prostate-information/prostate-tests/scans-to-see-if-your-cancer-has-spread
The earlier scans are good at finding stuff but not that good at giving you a negative result – the PSMA PET scan is much better (CT scan ~65%, whereas PET scan over 90%). It would be logical to begin the hormone therapy but this scan relies on this PSMA – which is present on the surface of every prostate cancer cell. Reducing testosterone would reduce the PSMA and make the scan less reliable, so no chemical castration just yet. A few nagging phone calls from my CNS to the hospital (this time even further away at Singleton, Swansea – a round trip of over four hours!) and they booked me in with two days notice. How does this differ from the other scans? Well, they inject you with yet another radioactive isotope, this time Fluorine18 – emitting positrons – yea! more physics. They let you sit for a bit, well, two hours in a lead lined box. It only has a half life of 109 minutes so . . . . it’s already decaying but hopefully reaching all the cancer cells. Next is a quick CT scan – this gives the computer the shape of you and your internal bits, so when they do the PET scan they know which bits are glowing. Again my trusty Geiger tube went off the scale this time
Even though a bank holiday followed the Thursday of the scan my nurse was onto it and had the results on Tuesday. Funny day that. It was a bit like London buses – you wait for ages and then three turn up at the same time. Well, my nurse phoned up to give me the good news – no obvious spread! But confirmed the cancer in most of the prostate and probably right seminal vesicle. He then gave me the go ahead for the hormone therapy – I had already written to my GP alerting them to this fact and enclosing the prescription for Degarelix that the urologist had given me. I was then able to make an appointment for the first injections that Thursday. Later that afternoon, whilst out walking the dog I had three phone calls – first was my GP confirming he had the script and had ordered the stuff plus a discussion on my blood pressure and some more pills to reduce it, then a short call from the head urologist himself, basically making sure I was going to get the injections soon! Yep, this Thursday. He also told me the radiotherapy would begin in three months which was good news. Next was a MacMillan volunteer chatting for ages about me and how I was getting on etc, they are a very good service . . . .so bit of a whirlwind but now we can can begin treatment . . .I was dying with prostate cancer but now I’m being treated for prostate cancer! Yippee.
And on to the next stage . . . HT or Hormone Therapy or Chemical Castration – let’s not beat about the bush – although that action may be necessary if the side effects are to be believed!
The urologist gave me a kind of prescription sheet for HT at our 13 min meeting – it was for Degarelix (trade name Firmagon). Not heard of this but a quick search revealed what it was: https://firmagon.com/
“FIRMAGON is a gonadotropin-releasing hormone (GnRH) antagonist that immediately stops testosterone production at its source, eliminating the possibility of an initial testosterone “surge” and any need for additional therapies to counteract surges”
The actual process is fairly simple – visit your GP’s surgery – and here I was very fortunate in having a nurse who was proficient in administering this drug, as she had used it quite a bit in a surgery in Sussex. The prep of this stuff is a bit longwinded – involving adding water to a powder, gently stirring – not shaken – shurely an anti-Bond cocktail? And then very slowly (30 seconds) injecting into your flab on the stomach at a 45 degree angle . . . .twice. A whopping 2 x 120 mg load. What does this do? Well, it binds on to the receptors in the pituitary gland which cuts off the signal to the testes, saying stop making testosterone . . .which they do and in fact completely do within 3 days! You then go back each month for a single, maintenance injection of just 80mg. (1st September 2021). So what does it actually feel like? See here for a full list . . . https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/degarelix
But what did I experience . . . .on the day, not a lot, at first. By the evening – extreme hot flush and sweating overnight plus some chills too. The next day the title of the blog comes to mind as there was Pain at the Injection Site – a red rash and a lump in the middle of each injection site, which became too painful to touch . . .sleeping was difficult and the nightly hot sweats continued but over the course of a week this gradually subsided. As to other side effects . . .not sure . .looks like the libido has gone to zero as has the sexual function and yes, it does feel like there is some shrinkage down below! I can only hope the same effect is happening to the cancer! I’ll keep you posted . . . . . .thanks for reading!
Three weeks on and things aren’t too bad. Still a few hot flushes and little happening in the trouser department – what lovely old-fashioned phrases! The latest webinars from Prostate Cancer Research are very good – they are running these from August through to January. The latest are all on nutrition and have been quite useful . . .did you know that prostate cancer cells feed off fats rather than glucose, like other cancer cells? So, reducing your fat intake, particularly dairy, is a good idea. Increasing the soya and pomegranate intake is very good – see https://www.prostate-cancer-research.org.uk/living-well/
I have been meaning to show you some of my “art” work. Last Christmas I put a stake in the ground to support the Christmas tree but afterwards I found I couldn’t remove it…. I hit it with a brick and the end flew off! Now I had a sharp metal spike – so I put a wooden block on the top . . .this looked daft…. so I embellished it . . .then there was Grayson Perry’s Art Club on the TV – a great support and distraction during Lockdown. I thought I would enter my “Robot Dreams” thing. Then I made another- the mauve one . . . . .then this cancer came along . . .so I made a third . . .symbolising the trauma of that biopsy – yes, 16 bloody nails . . .they say art can be raw sometimes. The last one comes after the nuclear bone scan and the injection of the radioactive Technetium (symbol 99Tc ) . . .I must do more (?)
Oh, it wouldn’t be me without some awful jokes – here’s my modern take on Groucho:
“I’m just dying to see an oncologist!”
Well, it’s coming to the end of the first month on hormone therapy. The hot flushes are still there – far worse at night: duvet on/duvet off! Also finding it hard to sleep. The nutrition webinars have been really helpful and the last one on immune system/gut health was exceptional. These really are good and have caused me to change things – if you are a PCa patient or just want to avoid becoming one, then your diet is very important. As Hippocrates said “All diseases start in the gut”. The typical Western diet is 75% useless at providing the right food for the biome in your gut- take action now guys to pave the way to a brighter future . . . so what have I done….. cut out all dairy and swapped to soya milk and yoghurt. Eggs are not classed as dairy but do contain choline – which is concentrated in PCa cells – so 3 a week seems to be the recommendation, The whole thing is to help your system – why get it to fight toxins, disease, viruses, bad bacteria as well as fighting your cancer? Makes sense. I’m exercising more (not just walking the dog but 20 mins on my new Cross Trainer! See below) and trying to lose weight . .I’m increasing the quantity of vegetables and switching more to white meat and oily fish. Venison and rabbit are meant to be good as they contain arginine – this helps T cells fight tumours! I’m also very very reluctantly reducing my alcohol intake! Sigh. Mon-Thurs free then up to 14 units on Fri-Sun. Taking some supplements and CBD oil . . .
So, apart from the diet what else can you do? Keep fit! Our dog is getting on now and although he does chase a ball and enjoy a swim, he is a lot slower and our walks are correspondingly getting slower too. So we bought a Nordic Track elliptical Cross trainer! We had a similar one before and its low impact but motivating motion made us get a new one. This device has built in iFit – you get a free year’s subscription and you can link your phone or iPad to it and follow real trainers! I spent many sessions following Phil Catudal as he wandered around the Dominican Republic…just walking and endlessly talking. It was interesting and more importantly, it kept me going! It was interactive…as he went up hills, so the machine increased its incline and the resistance could change too. All in all, great fun and motivating. It’s also good to do some stretching and improve balance so I try and do some of that as well as rekindling my old activity – Tai Chi. Right must get on as there’s a zoom meeting about Surviving Hormone Therapy by the Cancer Rehab team . . . .
Well, I am trying to survive this hormone therapy and it’s really not nice but it does remind me this is serious! What did I learn from that Microsoft Teams meeting (their version of Zoom), well, the presenter Andrew, is a real PCa patient and is going through all of this, which is a first . . . whilst it’s great to get GPs and professionals talking, it’s really a great help to have a fellow sufferer – in front of you; giving help & advice. It was also the first time I’ve been involved in an interactive online meeting and was able to ask questions. A bigger list of possible side effects:
- Hot flushes- yep all day – now adding – one of the biggest pains – keeps me awake at night
- Night sweats- yep
- Loss of libido- yep – now adding – complete loss of sexual function
- Erection problems- yep – now adding – completely gone
- Thinning or loss of body hair – not yet
- Breast growth & tenderness – not yet
- Blood pressure change – on pills already & monitoring
- Blood glucose increase – keeping low sugar/carb diet
- Loss of semen – – not able to produce any at all
- Muscle loss – not yet but upping my exercise – see above
- Shrinking penis & testicles – yep back to before puberty
- Exaggerated emotions/tears – no I bloody haven’t, stop asking me!!! Oh, I’m so sorry…sob! Suicidal?
- Fuzzy memory – er, um what? Yes, now adding – getting worse
- Depression and Anhedonia – yep, most days, I’m Dipolar (Welsh version!)
- Fatigue- yep
- Fat gain- not if I can help it
- Osteopenia/Osteoporosis – not yet
- Itching- yep
- !!Warning!! Some potentially embarrassing stuff below . . .
Well, quite a bit to get on with and the list isn’t meant to be a list of collectibles! But most of these will feature unless action is taken….. the hot flushes can be ameliorated by sage tea or evening primrose or just adapting. The erection problems I was already aware of but naively thought this wouldn’t really matter for a few months/years but I learnt something new – those “nocturnal erections” that all adult males get are not just a system check, as I thought but they perform a necessary, reproductive function – they keep that boneless, flabby organ prepared for inflation to the correct size for reproduction! Take away the hormones and you take away this function . . .if left long enough (for me it could be 3 years!!), the penis will get fibrosis and will never return to its previous grand shape and size (oh yeah?). So a rather mechanical and regular stretching regime is required – all the machinations of sex without the slightest reward or fun. This can be achieved via pills and/or a pump (see your CNS and GP – you can get both on the NHS – yes, really). I’m trying to combat some of the other side effects by improving diet as I’ve mentioned above and exercise will help – not just for muscle & strength but also for bone health – here Andrew recommends stuff that will stress the bones a bit – like jogging, weight lifting or just stamping….yes this works! I’ll report on other side effects as I go along . . . . it is good to have a caring partner who can help with a lot of these things but you must share and chat about it….it’s new to them as well. Remember, you’re not alone . . . I’m one of them too! And happy to chat.
Second, maintenance jab last Friday. Again, the visit and injection were fine but some 6-8 hours later . .the blog title comes back – Pain at the Injection Site. Plus several days of emotional upheaval – Sunday, I was out walking the dog, across local fields and I just sank to the ground and started crying . . .my wife came back and I got up….carried on. Weird. The next day I had the worst episode yet….bed time…on my way to bed and again, I just sank to the ground crying and this time hollering and sobbing loudly . . frightened the life out of my wife! Lots more hot flushes, sweats and a much bigger reaction skin wise (see pic above). It was more painful, more of a big lump. The rash had spread to over a foot wide – my GP was concerned and made me draw a line around it – ah, I see his wisdom….to see if it gets any bigger. But, it didn’t. And it’s day 6 now – still painful but hopefully reducing. The half-life of Degarelix is 53 days . . so I guess there’s still a lot of the drug left from the first, big dose of 240mg. So having the second dose of 80mg, whilst the first lot is still around is going to cause a bit of a flare up. Hopefully, after many months, it should calm down a bit…..we hope. And don’t forget this is what they forcibly did to Alan Turing – convicted of homosexuality (when it used to be a crime) and made to have chemical castration – later that year he took his own life.
Halfway through the second month of HT. No, it’s not nice. It’s true you do feel a different person – emasculated and lacking. I suppose it makes it all seem VERY SERIOUS. Like most blokes, I had hardly any symptoms and now I’m awash with them, well, not symptoms but side effects. The bouts of depression, anxiety, insomnia, endless volcano moments (hot flushes) and brain fog put it all into focus (or out of). I also get the feeling that I’ve been “parked”; the NHS has beached me with this HT . . he can stay there for months, years even . . .we don’t need to contact or even think about him for a while. Yep, it’s that abandoned and isolated feeling again. And I suppose they’re right . . . no need to rush into the next stage . . .Radiotherapy! Yep, that’s up next. My urologist said “in 3 months”, which means start of December but somehow I doubt it. No news/letter/email from the uro, CNS or GP. The system is in chaos – my local hospital has shut owing to the increase in Covid cases (over 45,000 a day in the UK, yes, really). I’m not looking forward to RT – it does have the purpose of a “curative intent” – that’s as far as they’ll commit to saying you’re cured of cancer. But it is true, RT can really do the job. What does it involve? Well, you’re invited in to the department, they’ll have all your previous scans – they assess you and then do a planning CT scan – to find out where all your bits are and of course, map the cancer. They usually tattoo you with 3 marks – a kind of alignment marks so they get you in the correct position each time. They feed the scan and your info into the computer and it calculates how much radiation (X-ray) you’ll need and where. They then break this down into fractions – usually 20. The reason being that the radiation is pretty powerful – it can and probably will cause collateral damage, so it’s done 7-10 minutes at a time each week day for about 4 weeks . . . a bit like this
No, it’s actually painless…. at the time. The problem for me is that Singleton Hospital is about an hour and forty minutes away. So driving there each work day for four weeks and back is a bit of a trial, we may do or we may find somewhere to stay . . .it’s out of season so maybe there’s an Airbnb or something . . . it’ll be me, the wife & the dog! The only scary thing (apart from that video clip) is that I’m following a fellow sufferer, who is a few months along the line from me but has the same cancer staging . . I will follow him closely. He said he didn’t like the daily enema 2 hours before the Zap – to which the nurse said , don’t worry by week three or four, you’ll have diarrhoea anyway . . . . sooooo much to look forward to. I’m trying to research the use of a Spacer – it’s a procedure where they inject hydrogel in-between the prostate and rectum – this pushes the rectum a centimetre away from the prostate – the Target – and hopefully reduces the damage. Typically, men get urinary, ED and rectal problems from this treatment . . .either during the treatment or days, weeks or months later – it is ionising radiation guys, there’s no way to disguise it. Oh and hair falling out, soreness from radiation burns and so on . . . . this spacer isn’t available on the NHS (in Wales) but I may be able to get it done privately…..maybe… Well, third jab coming up in less than two weeks – if the reactions continue to be bad, I may ask to swap to another drug. You can do this, since you’re now at zero testosterone and prospect of a flare and it’s cheaper! Not sure how to go about this but I’ll try . . . . . .
Well, another month goes by. Some good news my CNS came through and I’m going to move from Degarelix to Prostap for my hormone therapy drug and also to a 3 monthly injection too – this may enable us to have some kind of holiday after my RT. I’m still waiting for news on that but it is imminent! He’s also authorised the VED – the penis pump, yippee but TBH, I’ve little enthusiasm but I’ve got to give it a go, with the hope that things may return to normal . . . some time in the future. Apparently, the longer you are on hormone therapy – the longer you remain castrated, the chances of returning to normal testosterone production reduce with some guys remaining castrated! Hmm. Luckily, those statistics are for older guys . .so, there’s hope! Third and I hope, final Degarelix injection tomorrow -I’m braced for the after effects this time! I’ll keep you posted.
Bit of a cock up. Despite having emailed that photo of the big reaction of the 2nd jab three weeks ago – the nurse only gets to see it on the morning of the third jab and decides that it is tooooo bad a risk to incur a third and potentially dangerous reaction . . . even anaphylactic shock. Fair do’s. But I walk out of the surgery with no cancer treatment drug . . .bit of a shock. Now what? I email my CNS and amazingly, they get back to me within the hour . . .suggests a short course of Casodex (bicalutamide) to see me thru to the Prostap injection. To be honest once you get to zero testosterone…it’ll take months and months to get back to any normal levels so, they don’t seem too worried that I’m now adrift. I think it’s all a case of covering themselves . .so I get the bicalutamide the next day and start taking the 50mg pills…..Prostap 3 monthly injections to start next week. I don’t know if it is the new drug but 6 days later I have another one of those “emotional meltdowns” – I retire to my bed for a 20 minute episode of abject despondency, crying my eyes out and sobbing . . .I wrote a poem:
Emotional waters begin to drain from around my feet
I sink to the floor, looking out through my fingers
I could sense it coming, I knew it was going to engulf
Then it came the giant wave
I have no control, sobs, tears and cries out
Hollering like a pathetic child
I try like Canute to push it back
But no, I can’t
I can’t go any lower
Tide like then it passes
I stand, dry eyes
Get my hug
Yippee! I get to see my GP. And it was a nice half hour meeting – the first – yes, the first mask-to-mask meeting. And my GP is a very warm and understanding Doctor. One of the old school; who genuinely cares a lot about their patients and goes the extra mile . . . like answering emails on a Sunday night. Bless em! So, a good chat about me, side effects, HT & RT and then the jab. I’ve been on bicalutamide now for 10 days – the Prostap jab was easy. It can go in the arm, thigh or tummy – the latter is preferred and lo, it came to pass. One day later- not only is there no “Pain at the Injection Site”, but you can’t even see the site. Brilliant. I know we’re only a short journey along this cancer bashing route and the thought that I will only get my manly Mojo back sometime after February 2023 when testosterone levels may/will return to full/maybe a bit function is a bit daunting if not downright depressing. And there’s a lot of days still on bicalutamide . .which seems to have upset me bowels, oh well, like I always say, it’s like Brexit – the gift that keeps on giving. Hopefully, we can have a little break now, maybe…I don’t expect any letters/phone calls yet. I’m to have the usual blood tests 2 weeks into Prostap . .and this will also include the PSA…not done for 3 months. So we’ll see if this shitty Androgen Deprivation is really working on the cancer! Meanwhile, here’s a short video of the exercise machine and the iFit app with John Peel doing a walk through the forests of Costa Rica – nice and warm. The video ends with a view out of my window . . .nice Welsh weather!
Well, another BIG COCK UP on the communications front. The oncology medics in Singleton, Swansea have never heard of me – so much for being referred. Turns out I was referred on the 1st of September and should have been seen by oncology in October . . .and there was me thinking I was abandoned and isolated and actually . . . .I really was. I’m sooooo glad I’ve got prostate cancer – if it had been any other type I may well have been dead by now! And thank goodness I’m being proactive and asking questions – getting folk to check and re-check. Thank Goodness for MacMillan too. At last, I had a call and an appointment for 4 days before Christmas! So I’m really going to meet an oncologist. It’s always the same – the individuals are brilliant – getting things done and being sooooo caring. It’s the behemoth of the whole organisation that is creaking and falling apart. This will be just a Hello and do you want radiotherapy? This is what will happen, side effects etc. Then there’s the planning scan . .and so on (as above) – so the real treatment should start end of January, February maybe? We’ll see . . . . Meanwhile art work No 5 is finished . .I wonder what it’s theme could be ?!
Some good news – had a routine blood test – always done when switching drugs but this one included PSA test – last one was three months ago, so about right on timing and almost three months of hormone therapy….result is 0.9 ng/mL, which is good. All these castration drugs are working then! I’m also getting on with the VED (see above) and do the 10 pump ups each morning. I use an interval timer on my phone – 10 “workouts” for one minute followed by 20 seconds rest . . .seems to work and Andrew Gabriel is right, it’s not much fun – no “Happy Ending”, just a slog. I’m having a rough day or two – Ed, who wrote a nice comment below, when he visited this site, said a good and helpful thing – think of this HT like a volume control – your exaggerated emotions are just with the volume turned right up. Try to see it this way, maybe turn it down or just realise that your reaction to certain scenes are blown up to max volume. Thanks. Although I’m tempted to go thru my blog and replace every occurrence of “therapy” in hormone therapy with “torture” . . . a bit closer to the truth.
Trying to get my head around the physics behind radiotherapy and the amount of X-ray photons they zap you with. The kit they use has come on leaps and bounds, with the idea of giving higher doses to the prostate cancer cells and not so much to the surrounding tissues (OAR – organs at risk . . .rectum,, bladder . .). I was wondering why there is a trend towards ultra hypofractionation . . .bigger doses for smaller sessions. Originally it was normal for a guy to have 38-40 sessions with just 1 or 2 Gy each time, then it went to 20 sessions with higher doses. Now it seems the move is towards 7 sessions of up to 8 GY! The reasoning is that they have discovered prostate cancer cells have a lower than realised alpha/beta ratio – bit techy but the lower this value is the more they are susceptible to higher doses of radiation – see graph below. So a session of higher dose will kill more prostate cancer cells and with better imaging and targeting equipment, the outcome for prostate cancer eradication with lower OAR toxicity . .is a possibility . . . .
Well, tomorrow I get my wish. I’m going to meet an oncologist. It’s been a long drag. In fact the waiting has been the hardest part. I have put up with all the procedures, investigations and scans, the waiting weeks and weeks and months in between each one has really been stressful. Tomorrow I’m back in the hospital. It’s been a long time since I was in that situation, in fact it was last August I was in Singleton. I doubt I’ll learn anything new….20 sessions of powerful x-rays, aiming to kill the cancer maybe but also likely to cause bladder, urinary and rectal damage. Well, it’s what I signed up for …I’ll report back. Meanwhile I’ve taken up the challenge of running a marathon (albeit in small daily chunks) in January – you can sponsor me if you’d like?
Spoke too soon – Covid strikes again!! It will have to be a phone consultation . . but it was a good hour’s chat with all questions answered by the very chatty and caring oncologist. They hope to get me in within 2 weeks for the planning scan and then it will be six week plus wait for the RT treatment to begin. So a January holiday may be on the cards. Looks like an early January appointment for the planning scan and then . . .the wait for the actual treatment. The good news is that I haven’t had any more mental meltdowns – the odd tearful moment but no more meltdowns. The patient consent form looks rather daunting – but it is like all forms and those sheets that come with all pills – the things that will/could go wrong…for the morbidly interested I give the link here: consent form. Meanwhile I’ve got to go to my local hospital with a prescription for dozens of mini enemas – such fun! Most guys sail through radiotherapy, maybe some after effects but this consent form looks most dire – the odd thing is, there’s no consent form for hormone therapy! Which most blokes DO NOT sail through and it’s effects can be life threatening & certainly life changing!!
Planning scan done. January 6th. Left home at 08:30. I got there at 10:30, 2 hours before the appointment – got to do the enema business first. A lovely radiographer, Eleri, came to greet me and collect me 30 mins after the enema had done it’s work. Great – I was the only customer, I think…so on with the forms and chat. Blood tested, water drank. Then on the table for the scan…trousers lowered and pants inched down a little bit. Lots of shuffling me about to get me in the right position. Green alignment lasers everywhere. Then a quick ultrasound scan, to check the bladder had sufficient volume, yep, a quick light CT scan to check rectum empty, yep. Then good to go – two CT scans. Second one with the contrast dye. After this three little spot tattoos – ouch – but very lovingly done by Helen. And then off you go.. In fact I was out of there 15 mins before my due appointment time. Brilliant. After this we popped to have a look at Clyne Farm – for a possible accommodation for the 4 weeks of treatment (which won’t be for another 6 weeks). It looked lovely and Anna gave us a good tour around – seems ideal. Only problem is….we don’t know the When. Have a look: https://clynefarm.com/
Trying to enjoy a week’s break – the getaway accommodation is rather excellent & we thoroughly recommend it – we’re aiming to revisit old haunts from our canal boating days as well as catch up with Stephen and Lucia, our dear friends from Sicily, over here on their narrowboat. See https://www.sykescottages.co.uk/cottage/Peak-District-North-Wales-Snowdonia-Fauls/The-Cart-House-965948.html
BUT. This shitty disease follows you around. There really is no escape. My dear GP emailed me late on Saturday with my recent PSA & testosterone results – oh, oh. PSA has gone UP! From 0.9 end of Nov to 1.8, start of Jan. It shouldn’t be doing this – it should reduce!! Plus testosterone is 0.8. The latter figure does indicate that my hormones are now at or below castrate level, nice. Not sure why the PSA has gone up….could be whole load of reasons . .the feckin’ about with my HT drugs . . .Degarelix – bicalutamide – Prostap . . .My Onco did suggest going back on the bicalutamide and staying on it with the Prostap injection for over 6 months!! Knowing what this cocktail of castration drugs does to me, I’ve said No at this stage – see what they make of that. My GP seemed to agree and has offered to advance my next jab to 1st Feb instead of the 8th. We shall see. Meanwhile, we’ll try and enjoy our break . . .I think the healthy dieting has gone to the wall this week! But then that’s a holiday for you!!
Back. I’ve decided to take the bicalutamide – I had ten pills left, so they’ll be my trial dose – I’ve got to fight this disease……I’m doing everything else I can – fitness, diet etc, so I’ll give em a go.
Hi, if you’ve got this far – well done. It IS a long one (oh not any more it ain’t!). Please leave a comment – even if it’s just to say, You’ve been. I’d love to hear your thoughts – have I got anything wrong? Should I tone it down a bit? What’s been your experience? Many thanks to all the guys & girls who have given me support, either through webinars, phone calls or emails – you’re all brilliant. Thanks.