Prostate Cancer - Ironman Triathlon
In October 2018 I completed my 50thfull Ironman triathlon at the tender age of 65 at the World Championships in Kona Hawaii—my third time there. It was very special as my oldest son Alan had also qualified and we raced if not together at least unusually in the same world championship race! Alan qualified in Thailand late in 2017 and I qualified at Ironman UK this year—not one of my greatest races but I qualified---unfortunately I already had an idea of what lay ahead !!
Rewind the calendar to 1stAugust---I am diagnosed with Advanced Prostate Cancer !!!!
So earlier in the year about May time I noticed that I was peeing more than normal especially at night. I thought maybe a urine infection for which I was tested but negative. One of my best mates from college years who lived in Orkney was diagnosed in January with the same---I went to his funeral in early May ! So with that in mind I requested the doctor take a blood sample as I suspected something more sinister. He did perform a finger test but felt my prostate was ok. The next week I am informed my PSA(Prostate Specific Antigen) is 19—a normal reading is under 1.This is a very good indication that something serious is up so I am referred to a prostate specialist who doesn’t think my prostate feels normal. Fast forward I have a bone scan which is negative but an MRI shows a shadow outside my prostate. I have a biopsy, which proves most uncomfortable as I have a narrow pelvis opening apparently, which then confirms advanced prostate cancer and aggressive---not what you want to hear but I am there with my wife Dot when the specialist confirms the diagnosis. I have to say that if I am going to be ill a better person to look after me you could not find ! Surgery is not an option so I am referred to an Oncologist Specialist Dr Ian Pedley at the Newcastle Freeman hospital(he proves to be a super personable chap).
So I see Dr Pedley who thinks hormone and then radiotherapy is the right way to go. I ask –what if these little b’stards have spread despite a negative bone scan? He sends me to London for a PET scan(only 2 of these is the country and both in London).The results of this confirm hot spots also in my right hip and lymph glands in my abdomen. That’s even more shitty ! Anyway we commence the hormone therapy---first a month of Becalitamide to wipe out my testosterone, an implant into my stomach area which lasts 3 months of Zoladex to stop me producing testosterone, daily Zytiga pills to stop the cancer cells absorbing testosterone and finally Prednisolone a steroid to mitigate any side effects. Testosterone apparently feeds the cancer.
So since really end July training completely screwed up and certainly when you have biopsies down there you don’t even want to look at a bike seat for weeks. I manage to keep a bit of running going after a sensible healing period and swimming. My oncologist is aware of my ‘hobby’ ! –he sees no reason why I should not race in Hawaii. Having said that no testosterone means you are effectively stuck in 6thgear all the time---my aim for Hawaii is to a) get to the start line and b) just finish within the cut off of 17 hrs.
Now we have the other issues! Cannot get travel insurance for this condition neither does my private health insurance cover travel in USA now due to the unpredictable costs. Should I inform Ironman ? Well I decide just to wing it but be careful. We go to Hawaii via Paris and Tokyo as every time we’ve gone via Los Angeles we’ve either lost baggage or missed connections or both ! It’s a bit more hassle with long layovers but proves altogether much more pleasant.
First event In Kona—the Ironman practise swim the weeks before the main event. Dot does it too with virtually no training in 1 hr 35 mins—I take 1 hr 29 mins----but you know you should sight every 10 strokes –well I peed about every 10 strokes ! Our apartment overlooks Ali’I Drive in a perfect location with great views out to the swim course—I sleep on the couch as I’m up every hour to –yes—pee. As for the race my strategy is to just take it easy---I’m out the swim in 1 hr 28mins, no rush, complete the bike in 6 hrs 45 taking it easy but when I get off to run just nothing in the legs at all---it’s going to be a long jog/walk and so it proves at over 6 hrs---I come in at 15 hrs 15 mins and easily the toughest Ironman I’ve had to finish. I tried to push a few times but did not feel too good and backed off reminding myself the object of the day was to finish! About 1 km from the finish line our Alan joined me—he’s finished in 9 hrs 30 mins –wow. Anyway the benefit of finishing down the order is you get a great welcome from the crowd—and I have a personal catcher in thee Simon Ward—coach extraordinaire !! I actually don’t feel too bad afterwards after a horizontal rest ---but too late for a beer as all bars closed !
Next morning I’m fine---up for breakfast overlooking the swim start and a huge Bloody Mary !! After lunch I get a shock as I pee fresh blood twice but then its clear. We go to the awards but after an hour I have to leave as I cannot pee and I am in agony. We get back to the apartment and I pass a blood clot and can pee. The journey home is not very pleasant for obvious reasons. I have been updating my oncologist who has arranged for me to see my prostate surgeon the next day. He decides I need a bladder scan and an investigation by camera up you know where as a result of which I am booked in for a TURP’s operation which basically reams the urethra out and reduces the restriction. I have the operation again not nice and I get complications through blockages in my urethra and bowel afterwards resulting in two emergency re-admissions. As of today—I am still not sleeping much and in discomfort most of the time. I’m finding I’m getting up at 5 am ,having a coffee and going for a 40 min early morning walk---this keeps me ‘regular’ as I cannot really run or bike at present after the TURP’s operation.
Today I start have my first radiotherapy session—the first of 20 very day for 4 weeks Saturdays and Sundays excepted. In theory that should kill the tumour and shrivel up my prostate. The doctor says when we get that out of the way we’ll then investigate the other areas.
What I do not understand is that at 60 we get a ‘Well man check-up’, a bowel cancer test every 2 years and even an aortic aneurysm scan---do they check PSA levels –NO—and it kills more men that breast cancer does women. I even had a full health check 4 years ago and my PSA level according to the doctor was slightly raised at 7.2 –no emphasis at all. Two of my close mates have been tested on my prodding—one was 5.2 and the other 4.5 and both have the cancer and are having their prostates removed in early December.
Aa a final note other mad things I have done in my life—played rugby at a good level until the age of 36(good decision to pack in then before any serious joint issues !). Quite often in Ironman races especially in USA the supporters shout—‘you are looking good’ – to which I reply –‘it took 20 years of playing rugby to look like this and it bloody hurt ,the last time I looked good was when I was born’ !Done lots of fell running/adventure racing eventually culminating on my 4thattempt in a successful Bob Graham Round (42 peaks in the Lakes in 24 hrs—took me 23 hrs 54 mins).A Marathon des Sables 6 years ago in Morocco(7 marathons in 7 days in the desert).Triathlon X in the Lakes---voted toughest ironman distance in the world(last official finisher 19hrs 48 mins in a 20 hr cut off ).My 50 Ironman’s have seen me race from Japan to Australia, from Canada to Brazil and UK to Italy besides many others.I only got into triathlon as we had Foot and Mouth disease amongst the farm animals and going into the hills was forbidden. At the same time my brother in law had founded Ryton Triathlon club in Ryton near Gateshead—thougtht I’d give it a go---swimming crap and not been on a road bike since I had a paper round as a kid---but my running was strong. Funny now my running is crap, swimming pretty good and biking strong!
So as I look ahead what of the future---well I’m determined to train through my radiotherapy probably with lots of gym work to regain some strength, some running and certainly swimming which I started yesterday. I will leave off the biking as I do not want to further irritate an already pummelled prostate and anyway I have two weeks booked at Club la Santa in Lanzarote in February which will get my biking on track again. To be honest I’ve not had a break from triathlon training for 17 years so this episode has made me rest which cannot be bad. Exercise however is good for cancer recovery—as much as you can take—I have no problem with that. As for returning to Ironman races---well there is the unfinished business of Ironman Estonia for which I have a deferral from this year so watch this space !
A brief update...
OK so I started radiotherapy on 22ndNovember—the first of 20 sessions. Its ok – had an MRI and CT scan the week before to set me up. I have to give myself a mini enema 45 minutes before my session and then 30 minutes before drink two large glasses of water. First session they mark 3 little tattoos on my hips/tummy which they will use along with the laser to get me in the exact position every time. Once I am in position the staff disappear and the first thing is the machine performs a CT scan—this is used to make sure everything is in the right place and it takes them about 5 minutes to do their checking. Then the radiotherapy head pivots around my lower tummy which takes about 40 seconds and is completely painless. Then I’m off home.
I get into a routine of drive to Newcastle 6.30 am and arrive at the Freeman hospital about 7.00 am. I then go for a short walk around a local park to help my ‘constitution’, go into the hospital (sorry about the detail), empty my bowels before any enema, buy a paper and a drink then sit out side the radiotherapy suite, perform the pre-treatment rituals and wait to be called. Even though my appointments are at 9.00 am being early they often fit me in and I can get home. I am usually home by 10.00am.
That was all fine until the Sunday morning following my first radio session when I had a blockage ---very very painfull — my wife drives me almost screaming in pain to our local hospital. Just after registration etc I manage to pass the blood clot but they take all my vitals including a blood sample and send me up to Urology where they monitor me for 3 hrs then let me home. Monday is ok but then 4.00 am Tuesday morning another blockage this time more serious and even more painful so back to hospital where eventually they inset a catheter in theory for a couple of weeks. This means that I will not be able to train and will complicate my radiotherapy---I now have to clamp off my catheter to stop my bladder just emptying into my leg bag fitted to my calf. At night I connect to a 2 litre bag which I fill ---I have no idea where it all comes from but at least I get a half decent night’s sleep, the first in months.
The next week passes ok until the following Monday. I am on the radiotherapy table and after the CT scan I just cannot hold my bladder as the pain is too great and I stop the procedure, let some fluid out and we try again. This time despite my best efforts my bladder by-passes my catheter and I wet myself—procedure stopped again and very embarrassing. They will not do more than two CT scans in a day so I am off home which is very upsetting as I need this treatment! After another couple of days of difficult but just about manageable procedures my Oncologist calls me and says they are doing away with the bladder filling bit as the radio machine is sophisticated enough to manage without it. I can tell you that was a relief!
Over the next couple of weeks I finally complete my 20 sessions. The last week it has become very tiring not helped by a chest infection making me cough for England most of the day—this certainly is not funny with a catheter fitted. My oncologist has said it must stay in not only until radiotherapy is finished but for a couple of weeks after to allow me to heal---I actually have an appointment for the removal of said catheter on 9thJanuary.
There is a tradition at the Freeman Hospital that when you have finished your course of treatment you can ring the Macmillan bell nest to the radiotherapy suite. My wife Dot, who has been super throughout these last months, is with me for this final session and boy did I ring that bell. I apologise for the photograph—I don’t look quite as bad as that but it was early morning and at the end of a week of a chest bug—plus I’m crap at posing !!
I have been getting a blood test every two weeks by Lloyds Clinical Homecare when a nurse comes out to check me over and usually my next supply of drugs arrives before her visit. She then sends me a text the following day with my PSA result. So it started at 21 back on 29thAugust and has gone down to 6.7 then 1.9 then 1.4 then 0.557 then 0.27 then 0.144 and the latest as of 18thDec 0.092—that apparently is as good progress as could be expected.
I am however still not in a happy place as over Xmas I seem to have developed an infection in my bladder/catheter which is very painful resulting in a visit to hospital, full examination with bloods to check kidney function (its fine ) and prescribed a course of antibiotics. At the time of writing the jury is still out as to whether they will work but it is early days.
The toughest part of all of this, and I’m sure I am not alone, is the one step forward two back—its very disheartening despite my ‘Ironman’ will. In addition I have always held my emotions close—now with zero testosterone I find I can become tearful at the least thing—even when walking by myself along the coast for my 2 mile early morning constitutional.
By the way an update on my two friends mentioned in the original Blog with PSA’s of 4.5 and 5.2—they both had their prostates removed two weeks ago. They were frankly in a mess for about 10 days one more than the other but have now just about returned to normal but sedate life until they are fully healed.