Welcome to my latest blog. The title could be a modern twist on an old Groucho joke – but it’s true – diagnosed in June 2021 and having my radiacal treatment, Feb/March 2022 – 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 hope also, to give some sort of help to guys and their families who are now, unfortunately travelling down this same rabbit hole. It has turned into quite an epic and more of an encyclopaedia. Read it, use it – pass it along!
UPDATED07/08/2022 – click to skip to –latest item I am now, maybe, just maybe . . . a Prostate Cancer Survivor – just wanted to add that at the start – it has been quite a journey and mostly bad but I’m getting through it, sort of and you will too! This awful disease is totally preventable and in the main, treatable – so guys – over 40? Get your PSA checked every year – simple blood test – do it!!!!
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, would normally turn up at their GPs, complaining of pains in their bones, this is because it had spread and attacked their bones . . .the only solution then was to cut off their balls 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. Get Tested
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 bum. 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. Addition: I’ve heard so many stories now of men in their 40’s being diagnosed with PCa (prostate cancer) – so, if you can – get tested – simple blood test – your nurse at your local surgery will do it! Get Tested
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 peak Covid 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 that black cloak and huge scythe standing right behind me. Get Tested
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! In Europe, you could see a consultant, be scanned and treatment started within a month!! 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 as they were the only metal free garments I possessed. 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, yes, up the bum, numb the area with a local anaesthetic, then fire a biopsy gun into selected parts of the prostate, that’s right they fire a spring-loaded gun thru your rectum into the prostate . . . . . . . if that doesn’t scare the shit out of you and stir you 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 2021) Get Tested
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. You can have a cancer that’s a pussy cat or a tiger……. I had the Tigger variety! He gave me a book and filled in some of the pages, explaining that they thought the cancer had spread to just outside the prostate capsule and into the right seminal vesicle. 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 – perhaps toooo much detail but hey, it’s all here: https://radiologyassistant.nl/abdomen/prostate/prostate-cancer-pi-rads-v2 Get Tested
He then 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 (Vallium) 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 scan 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 next scan – 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, as they all look at the anatomy, 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%) and looks more at function. 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 – yay! More physics. They let you sit for a bit, well, two hours in a lead lined box. So, take a book. It only has a half life of 109 minutes so . . . . it’s already decaying but hopefully reaching all the cancer cells, for it only concentrates on the surface of prostate 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. Get Tested
And on to the next stage . . . HT or Hormone Therapy or Androgen Deprivation but I call it for what it is:- Chemical Castration – let’s not beat about the bush – although that action may be necessary if the side effects are to be believed! There is no consent form for this course of treatment which could last anything from one year to . . .forever. If guys saw what this drug could cause they would never sign it!!
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! So, medically castrated in 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! Why do they do this? Well, testosterone acts like a fertiliser for prostate cancer cells – eliminate it and the cancer stops growing and even dies back, shrinking a bit . . .for a while…(update note for guys starting HT – this was just me and it was for Degarelix – you probably won’t be on this….more likely Prostap or Zoladex – both injections and not as nasty re injection site pain and they also take a lot longer to work . . .)
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 were running these from August through to January, 2021. 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-library/september/ – I recommend downloading their slides, I still have some posted in my fridge – update March 2022 – after several months on the 2x servings a day of soya – I can report a significant reduction in the intensity and frequency of hot flushes.
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 (?)
Well, it’s coming to the end of the first month on
hormone therapy, chemical castration. 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! The castration effect causes muscle loss and weaker bones . . . . 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 . . . . Get Tested
Well, I am trying to survive this
hormone therapy chemical castration 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 Gabriel, is a real PCa patient and he has gone 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. (Update – Andrew still gives these talks – contact me for details, by leaving a comment below). A bigger list of possible side effects taken from his presentation for being CHEMICALLY CASTRATED:
- 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 – even 100mg “Viagra” pills not working much
- Thinning or loss of body hair – not yet but oddly different – update +6 months, yes!
- Breast growth & tenderness – a bit
- 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 their size before puberty
- Exaggerated emotions/tears – yes, this has been THE biggest side effect – suicidal at times (see below) – regular meltdowns, tears, tears, tears and worse
- Fuzzy memory – er, um what? Yes, now adding – getting worse – brain fog – memory loss
- Depression and Anhedonia – yep, most days, well I’m Dipolar (Welsh version!)
- Fatigue- yep
- Fat gain- not if I can help it – update after 7 months – waist size goes up by 2 inches!
- Osteopenia/Osteoporosis – not yet but getting very painful leg joints and muscles some 8 months on.
- Itching- yep – arms in particular – dry and itchy skin
- Adding in a new one – haemorrhoids.
- !!Warning!! There’s some potentially embarrassing stuff below . . . you don’t have to go through all this – Get Tested
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….. they say that hot flushes can be ameliorated by sage tea or evening primrose (maybe but not for me) or just adapting ( update – nope not for me, nor did acupuncture but 2 x soya helpings a day seems to help). 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 (5 or 6 a night in fact) 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 may 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, the pump or VED is free, get your Clinical Nurse Specialist to write to your GP who then prescribes it – easy – see video below. You can also get as many sildenafil (Viagra) pills as you want, previously the NHS only allowed you 4 a month, another benefit of being a cancer patient). 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. One way to get in touch with me is to leave a comment & I’ll get in touch. Get Tested
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. I’m told the Apple logo, with a bite taken out of the apple is in reference to his suicide. I’ve had three more mental meltdowns – several suicidal. Get Tested
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 of cancer 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, little, hard to see grey spots – 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…(Update: no I didn’t, no diarrhea at all, in fact I’ve had no bowel problems from RT). 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 and so on . . . .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. Some guys will remain castrated for life! 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. I can visualise the Daily Express headline “Cancer patient refused cancer drugs by Welsh nurse!”. Now what? I email my CNS and amazingly, they get back to me within the hour . . .suggests a short course of bicalutamide pills to see me thru to the Prostap injection. Because of this gap in drugs, they’re treating me like a new patient – the bicalutamide is to stop the testosterone flare that Prostap usually causes . . . . 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 . . .and 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 Canute-like to push it back
But no, I can’t
I can’t get any lower
Tide like then it passes
I stand, dry eyes
Get my hug
(Update) Six months on and . . . this is still the main issue for me! Get Tested
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, around 3 Gy. Now it seems the move is towards 7or even 5 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 . . . .I was also corrected, the energy of the rays is not measured in MeV but MV ….all to do with how they’re generated – if really interested, look up bremsstrahlung!
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? [Update – amazingly I did two marathons and raised over £600. The charity itself, raised over a million!]
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!! To be honest, if there was a HT consent form no sane bloke would sign it, LOL. Get Tested
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.
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. 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!! Get Tested
Back home. 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. I’m still questionning that last Prostap jab, i didn’t get any lump, no sign of the depot of drugs and I’m getting some of the old pre HT me back… nocturnal erections and I appear to be “growing some”, as they say, curious. We’ll see after the next jab…
Well. I’m very impressed. I was told “it’ll be six weeks” but the letter arrived today. Informing me that an appointment has been made for the 7th February. So my radiotherapy will start. Wow. So my Onco and her team have pulled all out the stops. A letter within 3 weeks and an appointment in 4. Brilliant. My dark side imagines an ulterior motive of perhaps there’s something wrong and we’d better get him in? He sounds mentally unstable…get him zapped asap! No, I guess things just worked out and a slot became available! A nice Monday, 1230 meeting and then 1330 linac zap. I’m so glad I gave up drinking last Sunday…in preparation for getting my body leaner and fitter plus initiating the hydration regime…half full bladder/empty rectum! Lol. So a bit of a stir on to fix up a 25 night accommodation! And find the £2000 to pay for it! At least I’ve completed my double marathon and raised £600 for Prostate Cancer UK. The charity has almost reached £1 million! The end is in site….but then that’s another advantage of wearing a kilt! (Homage Joke to Barry Cryer RIP)
Hmm, I spoke too soon. Seven days back on the bicalutamide and I had a big meltdown last night. No reason. No angst about anything in particular. Crept into bed at 1700, crying and sobbing. Rescued by my wife who said those magic words: “maybe we could open a bottle of wine?”. Ha. Was it a cunning ploy? No, I remained tearful all night but it was nice to have some wine. Maybe I was being too harsh on myself. A lot of friends have said, look after yourself, treat yourself. So, maybe we’ll stick to plan A which was a dry week with a beer or two at weekends. Hmm, 10 days go by and the emotional state doesn’t change – another tearful meltdown last night – I said I’d give these pills the two weeks (one week before the Prostap jab and one week after), so that may be the case. I’ve started taking my own turkey tail mushrooms (picked in the Gwaun Valley – along with a fungi expert!), cleaned, frozen , dried and then powdered. Supposed to have immune boosting and even cancer fighting properties – we shall see. Meanwhile it’s time today for Prostap jab No 2. Friday is PCR swab. Then Monday it’s the beginning of the four weeks of radiotherapy.
Second Prostap jab done. Hmm, quite a remarkable difference – definite lump this time (the depot), some redness and slightly sore . . .makes I wonder what went wrong with the first one? Was it duff? Would explain the rise in PSA/testosterone plus the “other” goings on “down below”. Doesn’t matter now. The whole lot are up for their X-rays next week! Had my PCR swab (I was gagging for it!) and my “Welcome to the Radiotherapy Department” phone call – very pleasant chap – Cheers Abdul. I think he was fairly relieved that I was fairly up on all the topics; this means I don’t have to have the half hour chat on Monday and can sort my consumption of the regulation amount of water before the Zap. Should be a breeze . . .I’m naturally anxious but also hopeful – this should be the beginning of the end. I’ll keep you posted . . . Get Tested
Day One of my radiotherapy. We’re off. Pretty anxious night before. Fairly anxious getting the regime right – keep hydrated – drink a litre of water in the morning, Enema two hours before. Go for a pee one hour (revised to 45 mins) before then drink 500ml (revised for me to 350 ml) water in 5 minutes. Wait. I got there far too early. It was no fun sitting silently amongst other cancer patients for an hour . . .I got called in and met Victoria- who was very kind and went thru the whole procedure – very similar to the planning scan. Yes, they do spend most of the time pushing you into the right position. Trousers lowered, pants too – just a bit so those tattoos are clearly visible. They then all run away and the machines whirrs into action – the red light comes on . . .CT like scan at first just to compare with the planning scan and also to check all your anatomy is in the right place. Once that’s been checked, the X-rays begin to issue from the linear accelerator. The million pound machine rotates slowly all around you, pausing occasionally to have a think. Then that’s it. The actual machine time is a minute or two. You leave with your timetable for the rest of the week. Hmm, got a few odd ones – early and late, could be a problem but we’ll see, One down. Nineteen to go.
Three days down and at 5% per day, that’s 15% radiation in! A friend did ask, “Is it painful?” and the honest truth is No. In fact for all 20 sessions there’s no feeling of anything happening to you at all. My biggest problem is still this ruinous Chemical Castration. I thought things might get better but we’ll see. A bit of a meltdown, tears and double diazepam today but I’m OK, I know it’s not me, it’s not the fear of anything – it’s the drugs – 50 years of testosterone flooding my body and now there’s none. Hoping to get more consistent times for the next few weeks – this week has been a bit all over the place – today’s zap was for 10 – so quite an early start and the ignominious sight of me peeing into a bottle as my wife drove us to the hospital but that was T minus 45 mins and it had to be done. Different linac today, Lin1, different team but always friendly and very helpful. Probably my last cone scan today for this week – the soft x-ray scan of your whole abdomen to check anatomy, bladder & rectum contents . . .seems OK. Once they’re happy that your are being consistent and basically can be trusted to implement the regime . .exactly the same each day then they can fire the X-ray photons straight in. If you’re really interested in this VMAT system see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3473700/ which explains the difference between this and the old system. This one can rotate 360o around you and has multi leaf collimators (MLC s) which are made of lead and act as a shaper and blanker of the x-rays, thus targeting the cancer and less so the Organs At Risk. I’ll try and do a mini, time lapse video if they let me. I’m mindful of putting some guys off but I think once you know the how and why, the actual performance is a cinch.
One of the best finds this week has been Maggie’s – a wonderful calming centre in an amazing building. I’ve decided I’ll do my waiting and water drinking here. I recommend this centre to anyone travelling in for treatment – they run lots of courses too as well as providing tea, coffee and biscuits.
One week down. That’s 5 out of twenty sessions and 25% “cooked”. So far so good. The first week’s sessions were a little all over the place time-wise but this second week sees my sessions around 12:30 or 12:45, which is great. It means I can get into a rhythm and make my system more consistent. It also means each afternoon is free. Should you take anti-oxidants during RT? https://academic.oup.com/jn/article/134/11/3207S/4688649 To be honest, I’m not finding it easy – the logistics – the traveling in each day – trying to put a smile on it – wandering around Sainsbury’s in tears (well, I know shopping in supermarkets can be a stressful thing) – it IS supposed to be THE CURE, I hope and so we persevere. Ticking off each day. The RT teams are great. I know they process dozens of patients each day but they are always cheerful and welcoming. I bought them a box of Nakd bars last week – much better than choccies and they liked them. On Friday evening, when I went in for my evening session on Lin 1 – they shouted out – “It’s the naked man!” – slightly shocked I suddenly realised what they meant, the Nakd Man, OK. Such larks. I did get permission to do my time lapse video. I post this as comfort to men about to receive this treatment or are considering their options . . .it may not be as quick as this but the actual X-ray machine is only firing for few a couple of minutes and you really sense nothing…..
Big shout out to all the staff who’ve been so grand so far in my treatment – Ailish & Victoria, Sophie, Mark, Jake and Olivia, Abdul, Hannah, Lowry the two Beckys . . . . .must note more names – sorry if I’ve missed you! Let me know. Bit of a delay today 25 mins – luckily hydration regime getting better but that was close! Nothing to report re effects – just maybe an aching prostate. We’ll see. 7/20 down. We’ll get to halfway by Friday.
It’s Thursday, session number nine – so that’s 45% cooked. Some 27 Gy of radiation “in”. Many thanks today to Sophie & Jake who helped me today – real quick session. I did a full real-time video of Wednesday – this one included the x-ray cone scan, to check on the anatomy – all good, followed by the standard treatment. Even with my editing, the whole procedure is still just ten minutes and that includes the lining up – you can see the green laser beams creating a “x marks the spot”, these are lined up with those little grey tattoos each time. Great, millimetre accuracy indeed. Feel free to share these videos – I don’t mind being the patient on view. I did these to show other blokes that it really is a breeze – Jake said today, it’s just a ten minute lie down, and it is that. Unfortunately, the lack of hormones is still playing me up and it may have been the relief of getting the RT done and escaping but I was in tears later on and despite a walk on the beach and lunch, I had to take a double diazepam and head to bed for a snooze.
Into the third week now. Monday & Tuesday done – so that’s 60% of me cooked. I was a bit bursting yesterday and there was a 20+min delay . . . woe, I just had to go for a pee and a let a bit out! They gave me a quick ultrasound scan – all’s well, within parameters – so in for treatment. I was trying to price up my treatment – putting the initial cost of the machines (around £1 -2 million each!) aside, I reckon with the consultations, reviews, planning scans as well as the twenty sessions etc, we’re looking at getting on for £30,000? Still getting some tearful moments and I’m worried they are more frequent and not going away……… .might try Mirtazapine when I get back if these spells don’t subside. Any side effects yet? Well, a bit of what-I-call, squeaky bottom on Monday, so I took some Imodium Instants (thanks for the recommendation, Ed) but nothing else. At the review last week – with the magnificent Beckys – they said not to bother with any more enemas and true, things are um, loosening up a bit. Prostate aching a tad but otherwise all OK. Still taking all my supplements plus pomegranate juice and my turkey tail mushroom tea. Might get some slippery elm & marshmallow – as they are meant to soothe the gut & bowel. Trying hard to reduce the fat intake and increase the protein and soy. Being depressed just cries out for FOOD and DRINK – maybe at the weekend we’ll have some red wine. I’m still researching the use of medicinal mushrooms and was very impressed by the film The magic of Fungi (Netflix?). https://www.netflix.com/gb/title/81183477. Try and get to see it – it’s a bit messianic but has a lot of good stuff with fantastic video of the fungi growing. Just seven sessions left . . . . great chat with Becky (the Review Radiographer), 2nd session – she said I was doing great. And a big Shout Out to student Tom – it’s a great job stick at it and make the most of your physical side of life (😱😉) – like most things, it’s finite!
Spoke too soon. End of week three. Had a no-go pee then stop start. Just as Becky said! Then up 4 times during the night for a pee. Also put my back out on Weds (just hope that was me and not the RT). Also getting odd aches . . .balls, groin, prostate and pain in hip? All a bit odd . Very Tired. Doesn’t help the emotional side of things . . . . And into week four – last week. A few more aches and pains but on the whole OK. More meltdowns – one on the way back from the hospital…just had to slam on the brakes and stop. Burst into tears and sobbing . . .only lasts a minute but they’re getting worse. The weather, the hospital trips, the big bill for the tree work . .it’s all attrition…It’s now week four and I’m on day 18, 90% cooked. Cone scan today. Hmm, bladder 30% up, tis OK but obviously drinking too much fluid in the morning. Two days to go. Two nights. Can’t wait. Had a wonderful chat with my Oncologist, Dr. P. – keen to use this blog (and me) to improve patient services…taking it up with the Hywel Dda health board. Good, anything I can do, I will. She also reiterated the side effects of pelvic region radiotherapy . . . it may continue and even get a lot worse over the next two-three weeks then slowly subside over 6 -8 weeks, when a baseline should be reached, which may not be back to my normal. Other long term effects could appear a year or two down the line. But will I be cancer free? To which the answer is, we’ll wait until you die of something else then we cut you up to find that out! I think once the PSA level is steady and remains steady for 5 years I’ll probably be in the clear. They’ll do regular PSA tests every 3 or 6 months. But I think I’ll be stopping the Chemical Castration soon. Meanwhile, I’ve more than 50 Shades of Gray in me! 95% cooked now….just one more dose to go . . .then a big PING! as the machine says, Patient Done, please remove from table and enjoy! That’ll be 60 Shades of Gray. Then HOME!! To be honest, I can’t wait.
Into week one of the “it will get worse for 2-3 weeks then slowly improve over the next 6-8 weeks” bit! And yes, a bit like the long list of side effects for
Hormone Therapy Chemical Castration, there’s a long list of side effects for radiotherapy or 6000 rads of ionising x-radiation to the pelvis. Fatigue is top of the list but I seem not too bothered by this – hard to tell, to be honest, as I’m not sleeping well – tend to be wide awake at 0300 or so. But it is true, I just don’t seem to have the energy like I used too . As I chat with other blokes about this, I’m coming to the conclusion that although “every man is different”, there is something common – whatever previous conditions you may have before HT/RT – the treatment will aggravate them. Men who were getting up once or twice a night, now get up 4 or 5 times etc. I’m a bit luckier in that respect, yes, I’m peeing a lot plus the weird no-pee, stop n start etc but at night I’m only disturbed once or twice. On the other hand I started to get a bad back ache – two weeks now. It’s got a lot worse. I could hardly walk this morning! Lower back and spreading sometimes into the buttocks and hip. My Onco confirmed that yes , RT does aggravate previous conditions. Plus she picked up on my previous nuclear bone scan –
“You did have signs of arthritis in the lumbar spine on your bone scan which would possibly explain the pain”. Hmm, so that’s it. Looking back my medical records, yep, it’s there . . . didn’t really understand or take in just what this meant . .
So, we limp on. I’ve got most of those urinary problems – yep. And today – looser bowels . . .we won’t go there but yep, tick that box too. A general feeling of being kicked in the abdomen – groin and ball ache too. Going to attend (by Zoom) a Mindfulness Course next week from My Cancer My Choices charity http://www.mycancermychoices.org/ There’s room for more people – especially men! Should be good. I’ll keep you posted . . So, into week two of this Red Zone but things aren’t too bad. Even went one night without having to get up so, fingers & legs crossed things could be getting better. So, end of week two and things aren’t too bad – had a trip into town for the car’s MOT and I had to stop and dash away, to do what bears do, in the woods! Wife took me back home … just in case. Could this be RT related or maybe that pokey chilli with homegrown Ghost Peppers last night ? They did say avoid spicy foods!
I’m reluctant to say, I seem to have got off lightly, so far, but . . .keep you posted. On a lighter note, I went to a local Men2Men event, invited by Luke. This is a Hywel Dda (our local NHS health board) sponsored thing that gets blokes like me together. Last Thursday I went to a woodland area hosted by Lee, who owns the woods and has built a large workshop and work areas. He’s a professional carpenter and gives some of his time, when not fitting kitchens, to helping men learn about woodcraft – I’m starting on an outdoor bench. Others were using the old fashioned rope lathe to chisel legs for a stool and one guy was whittling a walking stick. We also made soup and baked bread on the open fire. Good times and good chat and it’s the first time I’ve had a chance to chat, just me and other blokes for years – see https://www.men2men.org.uk/ and I’ll take some photos next time – here’s the place I went to Milkwoods – https://www.men2men.org.uk/copy-of-activities-1
There’s an excellent survey concerning sexual matters for prostate cancer patients – worth doing – the help & advice is poor (IMHO) – I learnt so much more from Andrew Gabriel’s “How to Survive HT” webinar – it’s a bit long and quite detailed: https://prostatecanceruk.org/research/prostate-cancer-treatment-and-sexual-problems-a-patient-survey
Still the CC drugs haunt my very being – the main radical treatment may be over and I may, just may be cured of this wretched disease but the after effects of no hormones causes me the most grief – another very big meltdown day today. Total physical and mental collapse – tears and depression . .this really can’t go on. I really sought a way out today. Another case of, wife, hide the knives! . . .maybe this will be the final Prostap jab after all. I really think my friends and neighbours have no idea at all of what I’m going through. Still, it will be all be over one day . . .one way or another . . Get Tested
On a more positive note – the second Men2Men day at Milkwood was great. It is very therapeutic; being outdoors and just in the company of blokes. My garden bench is coming on. A big thank you to Lee who owns the woods and workshop, for giving up his time to teach us Muppets the basics in wood turning! I took my mate, Mark along and he enjoyed it – coming away with a fully finished spatula. The recent upturn in weather does help too . . . link to the flyer for this event https://www.men2men.org.uk/_files/ugd/2540f5_a990f0c88fb84a22bb1081f2b33adf2f.pdf
Post radiotherapy update – my dear oncologist phoned up last night with my blood test results – good (ish) news my PSA is now 0.4 ng/ml. That’s good. (History is 28, then 30 after biopsy, then 0.9 after months of CC, then 1.8 oops and now after 7 months and one month on from RT it’s 0.4). Looking at the research, the PSA should continue to reduce and may take 2 years to do that. Then once it’s at it’s nadir . . .we keep checking the PSA and fingers crossed it remains stable, Sometimes there’s a bounce but it should remain less than one. Hurrah. Maybe, just maybe a prostate cancer survivor? Yey! On the bad news . . . . . . . the chemical castration remains the main bugbear . . .we’ll see. Plus, the waistband is expanding. I know this is another gift of having zero hormones and I am trying to keep to me diet . . .but, well, look at the photo . .
Some positive news – the Men2Men event carries on and is very fulfilling for blokes like me – this week we helped Lee build a wood store – completely on the hoof and from scratch. A different kind of fun. My GP has prescribed mirtazapine for me – I’ll let you know how that goes – got to do something about these meltdowns. I’ve also been referred by MacMillan via Bupa for 6 free counselling sessions . . .so lot of positive actions taking place. I also attended, via Zoom, the monthly FOPS (Friends of Prostate Sufferers) group – this is a great event – not just a bunch of old blokes like me moaning but also, a dedicated group of medics, who give up their time to answer questions and give support to all. See https://www.thefops.org.uk/ They tried to answer my $64,000 question – How long should I be on HT and when can I stop? Basically, if I have these suicidal and emotional meltdowns and spend a lot of days crying then STOP!! But, there is a trade off with longevity. There’s a report that guys who do the full 18 months….about 9% don’t make it to tens years post HT. Whereas those who only do 6 months have 13% chance of “not making it” to ten years. See the Harvard report https://www.health.harvard.edu/blog/hormonal-therapy-for-aggressive-prostate-cancer-how-long-is-enough-2019012815879. I was originally told I’d be on the drugs for three years but studies have shown that there’s little difference between 3 years and 18 months – see https://pubmed.ncbi.nlm.nih.gov/29980331/. So, bit of a toss up, eh? I’m doing 8 months….another jab on 1st May would give me 11 months . . .so, we’ll see. Maybe this anti-depressant will work long enough for me to complete a year’s worth. Watch this space!
Good and bad news. Good in that I’ve had some great times at the Milkwood project see https://www.themilkwoodproject.org/ and maybe a comment there that sounds like me? https://www.themilkwoodproject.org/uncategorised/were-getting-great-feedback/ and I’ve had a good chat with my GP who has agreed to start me on mirtazapine – an anti-depressant, The aim is keep me afloat and stop these meltdowns (very big one last Monday afternoon & a bit suicidal), so that I can carry on with the hormone therapy – not that I really want to but I feel my PSA is still a bit too high and we need to give both the HT & RT every chance to beat this awful disease. Maybe just one more jab? I also start the counselling sessions this week. Remember, you or your loved ones don’t have to follow me – Get Tested
Success. Well, that’s a good beginning for this post. Yes, I think this anti-depressant, mirtazapine is actually working and I feel a bit more buoyant, more like my old self. Plus the “two servings of soy per day” are also working – the hot flushes are fewer and less intense. I find it hard to keep up this soy intake. However, this morning, Easter Day, I toasted some bread, thinly spread Dijon mustard, followed by laverbread (welsh seaweed), slices of tofu – fried with pink peppercorns embedded and an egg on top . . .anything to mask the non taste of tofu and hide the taste of seaweed. Odd but it worked. Happy to receive any nice recipes for tofu!!
Looks like I’ve joined the not-so-exclusive club of Covid patients. Woe. So, the success of the previous post was a bit optimistic – had a few meltdowns since but I think things are improving – however, I’m still keen to stop the hormone treatment and may come to a decision on that this week. Covid is really nasty. Probably had the worst night of my life – constant coughing from 10 to 0215…a brief sleep, then back to coughing from 0330 onwards. Hopefully just a temporary thing.
Decision made. Stopping the Hormone Therapy (Androgen Deprivation/Chemical Castration). That was tough but the real tough bit will be in a year or so’s time. From chatting with my Onco and looking at the statistics . . . it’s a case of, Do I Feel Lucky? Will I be in that lower percentile group who have floating cancer cells and were always going to remain a cancer patient or will I be in the bigger percentile group – cancer cells fully zapped and cured? Only time will tell. Both my GP & Onco support my decision – it’s not just being a bit of a wuss, which I admit I can be. I can stick the dozen or so inconvenient and nasty side effects if I’m to live but if I’m tempted to chose not to live – because of this treatment, then it must stop. I can’t trust the marzipan (mirtazapine) to completely shield me from these mental breakdowns. I feel a weight has been lifted . . . we now have to keep on being tested – PSA & testosterone every 3 months to see how things go. I’ve got to stay on the marzipan until the hormones return and then some. Meanwhile, Day 5 and still testing positive for Covid . . . . triple whammy of drugs and viruses making me dopey! Happy Days.
And out the other side. It took the full 10 days before I was testing negative and even a week later I still feel that I’ve got a sore throat and cold, I ache and feel lethargic. My weight has hit a new peak – not surprising really – 2 weeks without doing much exercising. Plus a couple of big meltdowns – I was right the marzipan wasn’t going to be a 100% safety net. I long to be “back to normal”, whatever that is.
A significant day today – it’s exactly 117 days from my last Prostap injection – which the makers say is the limit of the drugs action. They do say “up to”, so I’m hoping the boys will get the message from the pituitary gland to start making testosterone again. I just hope they can remember how to do it! It’s been nine months!! No stirrings yet. My GP doubled the marzipan dose as it didn’t seem to be working – more meltdowns but this gave me a week of feeling like a zombie (and getting even fatter), so I’ve gone back to the minimal dose – see how we go. It’s beginning to feel a lot more like Summer and that does help the mood as does following live events from friends on YouTube. Such as Fraser Gartshore (2 organ concerts live for two hours, each Friday & Sunday nights) – not only hymn music but all sorts, a homage to Depeche Mode last night!! And boogie woogie on a massive church organ just has to be heard to be believed. And who doesn’t like a big, throbbing organ at the weekends?! See https://www.youtube.com/c/FraserGartshore . I also follow two great guys who used to be on a narrowboat, like us and weirdly but coincidentally, left that for the land after four years. They’re now enjoying the wilds of Scotland – see https://www.youtube.com/c/FoxesAfloat . I think Colin would like that last joke?! Thanks to both of these for helping my sanity over the last year.
Well, into the second month post Prostap (June 2022). Body hair still disappearing, weight, body fat increasing and there might just be a some stirrings down below, The big pain are side effects – yes, I’m now taking painkillers to tackle the side effects of mirtazapine (back and leg aches), which I’m taking to deal with the side effects of the Prostap! Daft – so I’m aiming to taper off the marzipan . .. .
Well, some good news to report – at last! Smiley face? I’ve stopped the marzipan – what’s the point of taking pills to combat other pills and live like a FAT ZOMBIE?? So I’m a week off those and getting on for two months post Prostap and yes, libido is returning and so are erections, well sort of and I know things will probably never be as they were but it’ll do and it is one less thing to get depressed about. I feel a lot happier and ” head above water”. The aches and pains seem to be fading too – a new yoga class in the village led by the excellent Becky has also loosened things up – I’m no longer walking like I’m auditioning for Planet of the Apes! Oh, on the ape theme, here’s a song that was an earworm in 1989 and resurfaced in my weird mind just recently . . .great band . . .this’ll get you up and Salsa!
Time is moving on. Into my third month post hormone therapy – not a lot to say, maybe some body hair growing but not much else. Also third week off the mirtazapine – so hopefully the side effects…aches and pains plus weird sleeping will thin out too. A month to go to my next PSA test. This is always a chilling moment for PCa survivors . . .I know it’s early days and yes, you can get a PSA bounce as what little is left of the fried prostate tries to recover and makes a wee bit of the antigen but it will be a worrying few days. It’s July now. Starting to get muscle and joint pain…keeping me awake at night. Well the huge list of side effects of HT does list arthralgia and myalgia, oh well…got to encourage the boys to restart the hormones!
More meltdowns, breakdowns and tears – sometimes immense and overwhelming. I guess I knew this would happen after I left the anti-depressants. My big hope lies in the return of my hormones and hopefully a new normal. Big day tomorrow (26th July), as I get my next blood test for PSA and testosterone. I’ll post the results here . . .what am I hoping for? PSA down from 0.4 to 0.1 or less. Testosterone up from castrate level of 0.7 to well, in the hundreds!!! Meanwhile, I’m still doing all I can – back on the physical workouts – on the cross-trainer on workdays. Still following Tommy Rivs on iFit – here’s a clip near the end of today’s 16 min workout – quoting Hemmingway – “Man wasn’t made for defeat!” It’s also our 41st wedding anniversary today, hurrah! Not sure I would have made it if it wasn’t for my ever enduring, wonderful wife.
Well the results are in. PSA is 0.4. Hmm. Exactly the same as four months ago. A bit odd but at least it’s not rising. I’m guessing that the downward trend of the radiation is mixing with the slight upward trend of hormones rising and creating a small amount of PSA. Oh and testosterone is 1.4. Also disappointing. Normal range is 6-30. I was hoping for more. Oh well. Onwards to the next test in 3 months. Another Golden Zone? Well maybe Silver. Here’s some data I found online: Results: Median patient age was 71 years (range 46 to 88). Median time to normalization of testosterone was 7 months (range 1 to 58). At 3, 6 and 12 months 28%, 48% and 74% of men had normal serum testosterone, respectively. Serum testosterone took significantly longer to return to normal in patients on androgen deprivation therapy for 24 months or greater compared to those on therapy for less than 24 months (log-rank p = 0.0034). There was no statistical significance based on age or type of luteinizing hormone releasing hormone agonist used.
Things are still a bit sad with me. More meltdowns and tears. And hot flushes – oh, just remembered – it’s Summer. That accounts for the poor sleep – I often come up to “periscope depth” – not quite awake but awake enough for that hypothalamus to think “Oh, a 0.1 degree rise in body temperature !” and it rushes to push that big red button in my brain: “Flush, flush, flush!”. So duvet off, duvet on, duvet off . . . und so weiter, un weiter as the Germans say. It is so very hard to be positive and to think positive when tears are rolling down your face. Ho Hum, another 5 weeks and then I’ll be at 18 weeks post CC jab and at that “48% of men etc” – vamos a ver, as the Spanish say. Some good news. I’ve reached 80 iFit workouts this year. OK some were just a 10 minute thing but I have stuck with it. And I think they send me a real badge (medal, medal!!) at the 100 workout mark. Here’s confirmation:
Things could be looking up as we think we ought to book a holiday – something to look forward to. Something we haven’t done for years. A cruise would suit. We’ve done these before. They’re probably not the same. They were catering for the lowest, commonest denominator back then, more than 10 years ago. But it will provide something for Steven to look forward to. To stop the “sitting on the sofa”; ruminating and spiralling downwards. And just before the end of this current Golden Zone of 3/4 months and the next blood tests. There’s quite an anxious interest on all the forums in getting travel insurance for a cancer patient but I’m probably in a luckier position (!?) of having finished treatment and it hadn’t spread (So Far!). Ploughing through all the web pages of “Get an instant quote”. Saga came up with what we thought was a reasonable premium and they are obviously well sorted as to what screening to ask:
last post above here
If you’ve got this far – well done. It IS a bit 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 really love to hear your thoughts. Maybe share your own story? 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. If you comment here, I will reply (if you want). Many Thanks. And, if you hadn’t got it by now . . . . Get Tested