A personal and ongoing account of living with prostate cancer

Pain at the Injection Site

Welcome to my latest blog. The title could refer to an incident at some Covid Vaccination Centre but I guess from reading the heading, you know that’s not true. 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. 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. 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 some 6 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 . . .

MRI scanner

https://www.nhs.uk/conditions/mri-scan/

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 biospy – go thru the perineum (area between the anus and scrotum) or thru the rectum . . .

https://prostatecanceruk.org/prostate-information/prostate-tests/prostate-biopsy

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

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.

My trusty American Geiger counter – the accompanying credit card sized info said ” If HIGH, evacuate are ASAP – contact government” . . .which I didn’t do but I did make another video . .intimating that I’d come back from Pripyat . .

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.

For any more detail on anything I’ve mentioned – have a look thru their site – they pretty much cover everything

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.

https://prostatecanceruk.org/prostate-information/just-diagnosed/locally-advanced-prostate-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 injection 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 chemmy 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

Much, much higher than the bone scan
This is the beastie – combined CT and PET scan
I left the counter on a table and it recorded the CT scan – over 500,000 counts per minute for 2 seconds!

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!

Again lots of free info available

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. 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 . . .

I just take one of these – relying on my diet to supply the rest of my NRV
Yes, so half these values
Some general vitamin and minerals for blokes over 50 – again just one of these
Been taking these for a while but recommended even more for PCa patients
Lots in those webinars about pre and probiotics -these will help
Vit D info – the webinar recommended up to 7000iu
Sorry for the fuzziness but the info on the “bug” pills

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
  • Night sweats- yep
  • Loss of libido- yep
  • Erection problems- yep
  • 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 – – yep
  • Muscle loss – not yet but upping my exercise – see above
  • Shrinking penis & testicles – yep
  • Exaggerated emotions/tears – no I bloody haven’t, stop asking me!!! Oh, I’m so sorry…sob!
  • Fuzzy memory – er, um what?
  • Depression and Anhedonia – will they tell any difference, 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.

Yep, PAIN AT INJECTION SITE! This pain and the rash got a lot bigger – my GP was very concerned but it calmed down a bit by day 5 . . .

A commercial video on using the vacuum tube plus more. You don’t have to watch this unless you’re a fellow sufferer and you don’t have to buy it, it’s available on the NHS. Your CNS has to authorise it and then the GP prescribes it….I’m still waiting….the second half of the video is all about incontinence – not a problem for me . . .so far!

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.

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

Well, perhaps not quite 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 . . . . . .

Hi, if you’ve got this far – well done. 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.

4 Comments

  1. Alison

    Hi Steve
    Loved reading your blog, thank you for adding humour and frankness to the journey! Is there more?
    My husband has a very similar journey/story, and awaiting promised radiotherapy in coming weeks (NHS chaos /waits allowing?)… also has Gleason 8 and already on the HT.
    Best wishes for your ongoing treatment

    • Profzarkov77

      Many thanks – nice to get a comment and to know I’m not just writing this for me.

  2. Ivan Yardley

    Thanks. Prof, for the link to this site from your comment on Prostate Cancer UK.

    All interesting stuff. I was for quite a long period of time eating 2 hard boiled eggs a day for the choline as the liver needs sufficient (around 550 mg a day for a man) of that chemical to function properly. The body only naturally produces around half that amount so consuming 2 eggs a day ensures that you sufficiently topped up. Then I read a couple of months ago that there was evidence that choline could make prostate cancer more aggressive and grow faster, so now only have 3 or so eggs a week. I keep meaning to check this out with my consultant and get his view on the matter.

    • Profzarkov77

      Hi and thanks for the comment. Yes, I love eggs in all their forms but limiting them to 3x a week is fine. I’ve changed to drinking only Fri-Sun and although difficult, as I do like my beer/wine/cocktails/malt whisky . . .I’m determined to tackle this disease . . I’ve come to realise this is serious! Do have a look at the webinars/download slides etc – very helpful
      https://www.prostate-cancer-research.org.uk/living-well-library/september/

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