Prostate Cancer – my story.

Below is my personal experience with prostate cancer and I will warn you, it is graphic. Do not read if you are easily offended, upset by gory details or lack a sense of humor, you may not look at me the same way again. I will be discussing the amazing 3 people in my ward who unknowingly shared a memorable night in the hospital which I will never forget. You have been warned.

The best way I can sell prostate surgery to anyone who may be considering this as an option is that you get to fart with the blessing of your family. Who doesn’t love to fart? Your wife will cheer with glee when you pass wind and she will reward you and encourage you to do it again. Its a win, win. As a Vegan I am a world class farter, sometimes to my own dismay but I lost my touch after the surgery, although it’s slowly returning. More on this a little later, but now that I have your attention…..

The hardest thing to wrap my head around with my prostate cancer diagnosis and the surgery was that I knew I was going to walk into the hospital fit, well and healthy, (okay, dehydrated and ravenous after 24hrs of fasting and 12hrs of no drinking) and walk out after surgery in much worse shape than I went in. I knew I had prostate cancer but it wasn’t affecting my life in any way; yet.

I rode a race on Rouvy (a cycling app) on Sunday 31 Jan and finished in the top 10% and exactly 1 week later I couldn’t get into bed without a bout of the shakes, incredible pain and a lot of help from Helena. My staples, where the surgical incision was made, run downwards from my belly button to the top of my pubic hair. Turns out we use the muscles in that region for everything.

Pro Tip #1 – shave as much of your pubic hair off as possible from your belly button down as far as you can go. I had new gauze and tape applied before I left hospital and when I got home I was walking over all hunched over like Quasimodo, I thought it was just the staples inhibiting my movement. So once we peeled the tape off, one pubic hair at a time, I could walk upright again.

I was diagnosed on Monday 11 January and knew immediately that my surgery was scheduled for 04 Feb. During that entire period I didn’t fixate on the fact that I had cancer, only that I was being admitted to hospital for surgery. I wasn’t in denial as I would happily chat about it with friends but I didn’t dwell on it either. I guess the fear of the surgery was greater than the fear of the cancer, even though the two were inextricably linked.

We definitely considered radiation treatment but as we weighed up the options, surgery seemed like an obvious choice for me. Each person / family has to weigh up what will best work for their own personal circumstances. Radiation would take place over 40 consecutive week days at the General Hospital and would take roughly 90 minutes of each day for a 5 minute treatment and would have a physically debilitating affect, leaving me run down and exhausted. I was also told that I would need to take Hormones to reduce my testosterone, resulting in lots of negative side affects of hormones including hot flashes, and trust me, Helena has enough hot flashes for both of us. Also, all I could think of was racing and training with less testosterone, a great excuse for a poor race performance so this was a non starter for me, surgery was the easy decision. I would highly recommend that each family thoroughly research their options with the experts at the hospital based on the stage of your cancer, age, and health, rather than using future race performance as your barometer, as these could have a major impact on your preferred treatment options.

It would be remiss of me not to mention the long terms affects of surgery which should be discussed with your loved ones which can include ED based on the percentage of nerves remaining after surgery (Google it!). Cancer treatment is not a singular decision and should be a family discussion. Make your wife or partner part of the discussion and decision process as I quickly learned that this is much harder for them that it was for me.

I feel incredibly fortunate to have had the surgery in such a short time period and this is my timeline so far.

Monday 21 December – Prostate Biopsy.

Monday 11 January – Results of Biospy.

Thursday 04 Feb – Surgery at 12.00pm.

Saturday 06 Feb- 2.30pm – discharged from hospital.

Monday 15 February – Staples in tummy to be removed.

Monday 22 February – Catheter removal.

Friday 19 March – Appointment for Pathology results.

People were very generous in offering to talk with me about their own personal experiences regarding surgery and I am incredibly grateful for all the advice I was given, but, I quickly decided that I wanted this to be a voyage of discovery for both Helena and I alone. So I took all the knowledge given to me from the hospital combined that with conversations from other people and left it at that. I declined more advice than I accepted because the anxiety and stress were already maxed out and talking about other peoples experiences was not helping me.

As a man with our associated machismo, virility and pride it is natural to be terrified of the catheter and the dreaded catheter bag. As I sit here with them still attached, its not that bad. I can get through an entire Netflix movie without having to get up and pee, so it has its advantages. The first time you look at the catheter is the worst and after cleaning it out a few times it becomes part of the daily routine. I will admit to breaking out in a cold sweat as I gingerly cleaned myself the first time. Side note – its amazing how quickly your personal barriers come down in a hospital situation. With a catheter in and feeling sorry for myself, you are very happy for a nurse to come and deal with your issues, inhibitions completely gone, pain and discomfort trump all inhibitions – what incredible people our health care workers are.

I tend to over dramatize things in my head, so I have them built up into incredible barriers that I can’t overcome and then when the real situation comes along I realize that things aren’t as bad as I imagined. That’s how I was with the catheter and the catheter bag. I won’t tell you here my thoughts in the middle of the night as my mind sought out the worst case scenarios of wearing one (I’m not sure if you wear a catheter, its kind of a part of you) for 14 – 17 days. The reality is that its not pleasant but its not as bad (yet) as I thought it would be and with each day I get a bit braver in working with it, cleaning it and living with it. I won’t miss it, but my mind is already playing tricks with me about the 22 of Feb when it will be removed. I imagine the worst and hope for the best.

Pro Tip #2 – remember to lock the valve at the bottom of the catheter drainage bag after emptying otherwise you resemble an excited puppy dog zooming around the house peeing uncontrollably. Your wife can find you as you left a trail.

So my surgery was scheduled for 12.00pm and at 12.00pm I was wheeled into the OR a nervous wreck, and at 3.30pm I was in the ward phoning Helena to tell her I was awake and doing well. My surgeon, Dr James Ashfield, told me that immediately after surgery, in the OR, we had a conversation which he said I would not remember (and I don’t). I apologized profusely to him as my Northern Irishness may have been exposed in a moment of weakness. Those of you who know me know I keep certain parts of it locked away in the recess of my mind.

Visitors – I was in hospital from Thursday to Saturday afternoon, so a relatively short period of time but still very hard not to see Helena or have visitors in that period. The 3 other gentlemen in my ward were long term patients and I can’t imagine how difficult it must be for them or their families not to see their loved ones. I had my cell phone but 2 of the 3 patients were 80yrs + and the 3rd was not a young chap so no cell phones for them. It really brings it home how the whole Covid situation could mentally affect long term patients and how that could have a detrimental effect on their recovery, very sobering.

Which brings me to my 3 room mates for 2 nights, some of whom may have been in the early stages of dementia and I am writing about them not to mock them but share my experience of 2 nights with them. I arrived in my ward as a newbie at 3.30pm and it was pretty busy with nurses coming in and out, administering treatments as needed to us all and me getting settled in. I had no side affects from the anesthetic and was wide awake immediately and able to phone Helena to tell her I was out of surgery. From diagonally opposite me I could hear an elderly gentleman chatting to everyone who came into the ward and he was so thankful to everyone for the help, just a nice guy. I chatted to Bob for an hour on Saturday afternoon and he came into the ward with a broken hip, however, he slipped and fell while in the ward and broke his other hip. To make matters worse he lost the feeling in his right foot with an infection and had just in the last couple of weeks had his foot amputated. He suspected that his left leg was going the same way. Yet, he had such a positive attitude at the age of 85. He was kind, pleasant and thankful to everyone and happy to chat away. Bob made my hospital experience very special.

Now to the antics of Thursday night. 6hrs after surgery I was watching CNN and then flicked onto Escape to the Chateau until 10.30pm when I turned the lights out for the night. I was not expecting to sleep well in the hospital and I wasn’t disappointed. At 11.30pm the gentleman opposite asked everyone for the next 90 minutes what time breakfast was. At 1.00am he drifted off to sleep and the man beside me started to snore. Then he threw something off his tray with a big crash so I had to call the nurse to check on him. All through the night my blood pressure was checked along with my HR and temperature so it was a busy evening but then the “breakfast” patient started to snore. Now there is snoring and there is snoring, and this was unlike anything I have heard before. A snore normally has an inhale and an exhale, this was a continuous inhale with no discernible exhale (trust me I listened to him for hours). As I lay there I realized that it sounded like being in a dentists. You know when the dentist get you to hold the suction device in your mouth to scoop up excess water while he works – that was the exact sound of his snoring. Bob started to shout at him to be quiet and the nurses came in. Bob asked for earplugs so I had some as well but they weren’t a great success. At 5.00am I was wide awake when my nurse came in to check my vitals and we just looked at each other and started laughing, it was so noisy. I was ravenous so he made me a PBJ toasted sandwich. What a night, no point in being angry or pissed with anyone, it was actually kind of fun.

Bob and I expected the same thing on Friday night but the ward was silent, we reckon the 2 snorers were heavily sedated for the night and I got nearly 8 hours of solid sleep – what a contrast.

Recovery – As I write I am 6 days after surgery and home recuperating. Would I opt for the surgery again? Yes, at this stage I would. Day 1 and 2 at home were a learning experience and I like to take things slowly and gently rather than the bull in a china shop approach. Showering and getting into bed on the first night was a major operation and you have to find your own routine and way of doing things. My second shower was much more pleasant. Helena is a trooper and no unpleasant task is any trouble to her.

Back to talking about farting again. When you arrive in hospital your stomach will be empty having taken a drink called CitroMag to make you go to the toilet plus an enema and fasting for 24hrs. You will also be dehydrated. Once surgery is over eat as healthily as you can, as the key is to fart before you can be discharged. Once you get home eat the prune cookies in moderation and sip a “Smooth Move” tea and monitor your bowel movements. You body has to adjust from being empty to the stress of major surgery to putting food back in. You cannot push to assist with a bowel movement, just sit there with a magazine and let gravity take effect. Clean everything. I went into hospital in pretty good shape and after 1 day of going to the bathroom 4 times, my thighs felt like I had done a 30k run.

My belly feels slightly distended, which I put down to swelling from the operation where the staples are in and breaking wind helps enormously with the pain management. Its a huge relief to produce the smallest fart and will aid and speed up your recovery. This is why I strongly recommend that you monitor what you eat and drink (caffeine can upset the stomach) as any type of blockage or constipation would be incredibly painful. Walking around the house helps me break wind so don’t sit for too long at a time. I’m still quite active but am starting to get a rash on the backs of my legs from sitting for so long.

My tips for a successful surgery and recovery.

  1. Be as fit and healthy as you can possibly be, as it will aid recovery from the surgery and speed up your long term recovery.
  2. Be patient, your wife or partner will be more stressed than you are. If you are relaxed, they will be as well.
  3. Recovery will be 6 to 8 weeks, do not try to be a hero to prove you are manly by doing too much too soon (he says after 1 week of recovery). My mantra for recovery is this, the slower I go now the faster I will train and race in the summer. The faster I recover, the slower I will be able to train and race this summer.
  4. Yes, it all sucks, the constant pain, the catheter, the rash from sitting too much, the inability to shovel or fill your pellet stove with pellets or even lift a heavy water jug out of the fridge. I think back to Bob’s positive attitude.
  5. Allow yourself to ask your wife and family for help, they will be happy to assist.
  6. Give yourself permission to read a really long book, or several books, watch movies on Netflix. Sleep in if you can. Take time off work or limit it to 1 or 2 hrs per day of computer time.
  7. No heavy lifting.
  8. Enjoy your Free Farts while you can. Ride this train for a few weeks because it won’t last forever.
  9. Do not put stuff off. Do you want to visit Ireland, run a marathon, go on a Yoga retreat, do it soon, you never know whats around the corner.

Finally – every single staff member whether it be in admin, nurses, surgeons, the anesthetist, the cleaners and caterers at Horizon Health Service treated me well. They were pleasant, good humored and skilled at their jobs whether it was 3.00pm or 3.00am. I have no negative comments at all. By the way order the Vegetarian or Vegan food, its so much better than the regular food and it was the lady who delivered my food who told me that. We are very lucky to have such great health professionals here in NB.

I will happily chat with anyone about the whole prostate cancer subject but appreciate that won’t be for everyone. The whole purpose of this post is to help take a bit of the fear away from the surgery and recovery. I learned from Bob that attitude is everything. I loathe winter but whether I love it or hate it, its still winter so I may as well have a positive attitude. Please get your PSA levels checked by your own doctor. Do not leave it up to them to do it automatically as some do not specifically check unless you ask them to. I had a 25% chance of getting prostate cancer which means that you have a 75% chance of not having it, so get checked out.

In a few weeks I will follow up with another post dealing with the following – staple removal, catheter removal, Pathology results (am I cancer free) and return to gentle exercise.