REAL LIFE STORIES

Mark's Story

A helluva a way to detox: my diary of prostate cancer or ……Very occasionally, if you pay really close attention, Life doesn’t suck!

This my personal account (based on blogs I’ve been writing during that time) of being diagnosed and progressing with Prostate Cancer over the past year. I hope you find this informative and amusing (in parts).

“Houston we have a problem” . . . during the early summer months 2017 I noticed that things were not firing as they should be (only blanks in the chamber), wasn’t on my A-game in work, my pants/undies didn’t feel comfortable and I wouldn’t have won one of those how far up the urinals can you pee competitions we used to have in the rugby club. I put all this down to the stress of my job (IT Project Manager) and my age (57), and hoped that a nice relaxing holiday would ease away the tensions, pains and problems. Whilst the holiday was brilliant and relaxing it sadly didn’t help the problems.

31st July 2017. First Step - First day back from holiday and fortuitously I had a doctor’s appointment pre-booked (I’d been suffering a bad ear infection). At the end of my consultation I mentioned my problems to my doctor. He immediately starting asking more questions and next thing I was been marched into reception with a directive to have my bloods done and tested that week and that I was to see him on Friday – that was a bit of a shock as normally you need to wait at a least a month to be ill.

Bloods done; I revisited my doctor as directed at the end of the week by this time starting to feel a bit curious. My doctor explained that my Prostate Specific Antigen (PSA) count was a bit high (should be around 3-6 and mine was 35!) but also explained that the PSA wasn’t the most accurate of tests and that other factors could be influencing. My doctor then carried out an examination of my prostate (first of many rubber glove moments) – enlarged, again not a clear sign as it could due to an infection of the prostate (Prostatitis). In his view there was only one course of action – referral to Urology department at the local hospital.

Now a referral on most NHS departments can mean a wait of months, imagine my surprise when the Urology department phoned me a week later and told me my appointment would be the following week. Shoot I thought things are moving a bit quick.

August 2017. Second step consultation – well first stop in the diagnosis is a consultation at the local hospital Urology department. Yep its rubber glove time again – beginning to feel like an extra from a James Herriot veterinary episode. Consultant not happy with PSA, but still not sure whether there’s anything to worry about especially as I’m quite young (ha ha).

However it’s time to start gaining a bit more knowledge (www.prostatecanceruk.org) as I’m now being referred for further tests. Now I didn’t know that more Black men get Prostate Cancer: Thought, am I black and no one’s told me?

September 2017. Third step MRI scan – Now the MRI serves two purposes it provides a detailed map so that the next step can be carried out accurately and it also checks if any problem exists outside the prostate area. Now for those that haven’t been MRI’d – here’s the low down. The gowns are meant for people a lot smaller than me! The machine looks like something from a sci-fi film sat in wonderfully calm looking room on its own. You are told to stay still whilst it’s operating – “strike that pose” for 30 minutes! But the crazy thing is that the machine is really noisy - sounds like a wicked Ministry of Sound club beat.

A week later Biopsy – Wasn’t looking forward to this procedure as it was described as uncomfortable. Now uncomfortable is a term that can be used in many ways – it can mean the tube inserted into your backside so that they can insert an instrument that allows them to take samples (with a staple gun click), or the female consultant, with her female assistant and two female students having to view your hairy backside (Seriously the team were brilliant and very reassuring) or can mean the mega antibiotics that left me wiped out (but did the job). Lovely comment from the assistant following the procedure – so glad you didn’t wear Chino’s can get messy, even with the nappy/pad.

10th October 2017. D-Day what’s up doc? – Back to Urology for the results. So bottom line (not sure if that’s an appropriate opening) bad news you do have Prostate Cancer (PC), good news it looks like it’s not spread. Now this is ok because there are lots of different treatments right? Um No – I have a medium sized tumour in my prostate and there is only one course of action; surgical removal of my prostate. Whilst this is not ideal, it will create some short term problems (I’m known in work as MrP, I will become MrPee for a while), it does mean that the cancer will be removed and should mean that no other treatments are required.

October 26th 2017. Hey is it Halloween? Today I've given blood (to the vampires, not) and been hooked up with probes (ECG) like Frankenstein's monster before been subjected to a million and one questions. But this was all in a good cause . . . my pre-op is complete and the date is set for my op - 16th November. Bring it on, let’s kick this PC into touch. Once again the Royal Gwent Hospital Urology dept. were brilliant.

November 16th 2017. Operation removal - the day arrived extremely early (7am) at Royal Gwent Hospital Urology theatre and day patient clinic. Pre-flight checks complete, bowels emptied (with a little help) and dressed in a very fetching blue backless number. As I look around at the other patients I am suddenly bowled over by the size of some of their case folders – mine is a ladybird book in comparison (and long may it stay that way). I am the only surgery scheduled for the morning – oops no way back. Wheeled into pre-op – where I met the anaesthetist team, who were as funny a bunch of people you could want to meet prior to surgery. Epidural applied and my legs sudden felt so heavy, then it’s a case of sit back think of something ….zzzzzzz. Four and half hours later - hello world I’m back. At 6pm finally wheeled onto a ward just in time for dinner (potato & cheese pie and baked beans . . . yum). Everything has now become very real – nice line of stitches (5 inches worth) down my middle, drips, catheter and drain attached, and looking around at my fellow patients I’ve joined the Frankenstein club .

Small steps – three days in hospital and went from feeling not too great (wanting to heave but can’t due to the stitches), feeling blue as the anaesthetics clear from your body, moments of panic and lack of sleep (as the wards can be noisy) to getting more manoeuvrable and losing the drips and drains. It’s at this stage I would like to thank all the NHS nursing staff – I’ve seen the best and worst of the NHS, but the nurses that looked after me were absolutely wonderful. I seriously don’t know how they do it.

Steps forward and setbacks – Paroled for good behaviour (and the NHS need the bed) and sent home. So great to be home, but now unhappy with the pressure this has now put on my wife. After three days of being told to stay in bed, I finally go stir crazy and head for downstairs, not before I weigh myself – half stone lost due to sensible eating, no coffee, no alcohol and lots of water. This a hell of a way to detox!

November 30th 2017. Mobility increases - Catheter out with a deflation of the balloon (which is an odd sensation) and a smooth tug by specialist nurse Janet. Now there’s a different problem to overcome – incontinence; so it’s continue with the pelvic floor exercises, learn to tighten up as I sit down/stand-up and of course man size NHS supplied nappies! (inconti pads). I have to admit during this period, I cried due to the lack of control (and possibly dignity) which in the context of the bigger picture was quite stupid. Now have to wait for my body to settle back down before hopefully being given the all clear.

January 2018. After periodic visits to the hospital for clinics to get over the surgery side effects and more tests (we’ll come onto that bit in a minute). Side effects from such radical surgery is lack of control with the water works (incontinence) and lack of manhood (only thing I can raise is a smile), but there are ways and means and we are exploring the options – but I have discovered that Yoga is great for developing the pelvic floor and damn good fun. I've also found decaf coffee and tea is the only way to go.

So test wise they are still extracting blood from me on a regular basis (beginning to feel like this is stealth blood donation) – so last August my PSA was 35.5! Which is what sparked this whole journey and in January my PSA was 0.9 – good; eh maybe not as no longer have a prostate.

March 2018. Another PSA – heck it’s now 1.2; prognosis? the evil C escaped the prostate before it was removed. So what now – more scans and tests; which have confirmed not in my bones or my lymph (which is GREAT news) and it’s likely to be a micro amount that is in some of the seminal tissue. So as I headed towards my 58th Year I also headed to Velindre cancer hospital in Cardiff for a course of radiotherapy – 5 days a week for 4 weeks. It’s likely to make my recovery from the side effects take longer, but with some luck this could knock this on the head.

May 2018. Well, that's it! 20 radiotherapy treatments over the past 5 weeks. Now have to wait 2-3 months for the results. It's been tough at times as the treatment causes fatigue, diarrhoea, proctitis, bleeding and makes you want to go the loo every hour (even during the night) - but it's all in the cause of getting rid of this C. Despite the stress on my body we had a few laughs along the way – The bevvy of ladies (Marks Harem) that offered to drive me to treatment, which gave the rest of my fellow patients something to talk about 

July 30th 2018. The C (make that “Continuing”) journey. So one year on and where are we . . . . Sadly back on the merry-go-round (queue magic roundabout music in the background). My post radiotherapy review with the consultant rather than giving me the big Borat thumbs up, gave me the news that my PSA had risen further to 6.1.

August 2018. So instead of celebrating and sunning ourselves on a Mediterranean holiday beach (so overrated … not) I’ve been scanned four ways (sounds like expensive foodie menu), and had further blood tests. We are now once again waiting, waiting, waiting – feels like we’ve done a lot of that over the past year. Hindsight is a wonderful thing however for giving you a kick up the backside when you’re feeling low and wee bit scared (and boy August had a few of those moments) – if a year ago my Doctor hadn’t put two and two together my situation could have been a lot more serious. And despite a major operation, Radiotherapy and dealing with (make that . . . still dealing with) all the side effects of both, I’m still here fighting stronger than ever and knowing that I’ve got the most wonderful love and support from my family, friends and work colleagues.

“Very occasionally, if you pay really close attention, Life doesn’t suck” (Joss Whedon).

And if anyone wonders the state of my mind dealing with this, perhaps this will answer that question. I was listening to the Edinburgh Fringe on the drive home from work and the following came into my head . . . .

Laughing at incontinence is just taking the piss.

Can someone with erectile dysfunction be a stand-up comic?

You can’t lie to a radiographer they can see right through you.

Please feel free to come up with your own one liners.

October 3rd 2018. What’s up Doc (Part2) – my scans and tests have revealed that PSA is now 10 and I now have secondary/advanced prostate cancer. The evil C has attached to lymph glands in both hips (could have told them that without the scans due to the mild nagging pain) and one near the Aorta. Still good news not in bones or major organs. Officially now it’s incurable but manageable and most definitely not terminal. Ok so what are the options going forward – now PC feeds off testosterone therefore to slow/stop its progress you need to stop feeding it – options removal of testicles or hormone treatment (daily, monthly or even quarterly) – at this point my wife and I looked at each other and took the 5 second decision on option 2 (phew!). I will also need Chemo to drive the condition out my lymph system.

TODAY 2018. So as I head towards Movember 2018 I’m already on a course of hormones (and have no pain) and have Chemo booked to start in December. I remain confident that we can get this condition (as I now refer to it) under control – I’m still young and have plenty options. I’ve learnt a lot about Prostate cancer over the past year:

1. The problem rising or has always been there but gaining more press

2. The number of cases in sub-sixty year olds is increasing. Been made aware of guys in their early forties that are not unsurprisingly struggling with the same journey as myself.

3. I’ve also learnt that testicular cancer is becoming increasingly prevalent in guys in their early twenties.

4. We need male screening for prostate cancer from 50. The symptoms can remain hidden for months evens years – and the earlier the diagnosis the more (and cheaper) options there are.

5. Men have to talk more – I found out two of my uncles have been living with PC, only by publishing my blogs. I can only praise my GP (Doctor Matthew Davies) for his quick actions and continued support, Royal Gwent Hospital Urology department for their care, advice and humour and finally Velindre Cancer Hospital for their outstanding treatment in such calm and caring environment.

I also have a lots of thank-you’s; fellow patients I’ve met along the journey for their openness, conversations and shared support (bless you all and live strong), to family, friends and work colleagues for your thoughts and support it is most humbling and finally to my wife (Anya) and daughter (Maya) we are stronger today than we’ve ever been. I am a very blessed and lucky guy.

So why have I been telling you this story – simple guys (and girls with guys)

I DON’T WANT YOU TO GO THROUGH THIS JOURNEY. I am taking one for the man team DON’T LET ME DOWN – GET YOURSELF TESTED.

If you’re fifty get your PSA tested if nothing else it will provide a base-line level for future tests. NO EXCUSES.

Prostate Cancer is still one of the most treatable cancers thanks to research and awareness.

Please feel free to share this post, I WANT PEOPLE TO BE AWARE

Author: Mark Patterson. Aged 58. IT Project Manager. Prostate Cancer survivor and incredibly lucky guy.

Other articles: LinkedIn – Project managing cancer