My prostate cancer journal
I hope this journal is useful to you. It's the story of my experience following a prostate cancer diagnosis.
About this journal
This is the story of my experience of prostate cancer in 2019. I hope it will provide some insight into what what you (or a man in your life) might experience after a prostate cancer diagnosis. In this journal I won’t be identifying myself, others or institutions.
Here’s a little about myself: I’m in my mid-fifties, living in Dublin, Ireland. I’m in good health, physically and mentally. I’m in a strong loving relationship, and I benefit from a good support network and a caring employer.
Why am l writing this? For a few reasons. Firstly, privately for me: as catharsis, for helping me come to terms with the prostate cancer diagnosis, surgery and its aftermath, and helping me learn the words for communicating my journey those around me. Its second purpose will be to help others through their prostate cancer journey. Of course, your experience will be different to mine. That’s one reason for me not naming names in this journal.
And thirdly this journal is for all the men out there over 50 who haven’t been diagnosed. Please take this journal as a warning. Prostate cancer is the second most common cancer in men. I was lucky to have caught it early, which should mean the side-effects will be less and the chance of cancer being caught very high. Be like me and get checked out by your GP regularly. Know the warning signs (look them up now) and if you suspect anything, tell your GP. I had an acquaintance who ignored the signs and died a painful, early death. Don’t be like him.
Ignorance and awareness
My Dad had prostate cancer. In 2010 he died a slow and painful death. He had been in excellent health otherwise. RIP Dad.
I’m not usually a frequent visitor to my GP’s surgery, but I told him about my Dad’s death and asked him for a PSA test. Since then he did them each time I visited him, and he’s done regular digital rectal examinations (or as my GP calls it, joining the marines). PSA means prostate specific antigen, and it’s the blood test that indicates prostate cancer.
In 2015 he referred me to my local hospital’s ‘rapid access clinic’, in which I’ve been having a PSA test and a checkup every 6 months or so. Over the last 4 years they sent me for three biopsies and two MRIs. During that time my PSA rose slowly to just below 6, and I had no symptoms apart from having to get up for a wee once a night (more if I’d been on the beer). The checkups became routine and a little tedious.
I had an appointment in March 2019 at which the registrar decided that although my PSA was almost unchanged and I was practically asymptomatic, I should have another biopsy. OK, whatever. The appointment was in July. I duly turned up, had the sample-collecting yoke shoved up my backside and went home for the day to recover.
YOU HAVE PROSTATE CANCER
We went off on holidays in July and I forgot about the biopsy results. An appointment letter awaited me on my return, so on the appointed day I wandered down to the hosp., read my book in the waiting room until long after my appointment time, then was finally called in. Registrar announced that one of the cores in my biopsy was cancerous, with 40% cancerous tissue, the majority of which was grade 4 & the rest grade 3.
OK, I ask, so what does this mean? The registrar went to get the consultant. We went through the options. I fainted. Came round pretty quickly. Fainting’s pretty common, apparently. The options, as he explained them, were fairly simple: radiotherapy, which he didn’t recommend for a chap in my circumstances, or surgery to remove the prostate gland. I asked if we could wait awhile and keep an eye on it - not an option.
And if I choose surgery (in practice, it wasn’t a choice) then I should choose between open surgery (i.e. a human with knife) or robotic surgery, where the surgeon sits at a machine at the other side of the room and drives a robot to do the job. Here’s a booklet about prostate cancer, he said, and call the nurse if the have any questions. Here’s her number. End of meeting.
Well Holy God, I have cancer. Fuck. Fuckitty fuckitty fuck.
Coming to terms
I rang the wife and hopped on a bus to work in a daze. The next few days were a blur. Went to meetings, ate lunch… all the time with this big secret, this big black scary truth hanging over me. It was surreal. I felt alone, frightened. My wife was away for the week.
However I’m a doer, so I did. I contacted a couple of pals who’d been through prostate cancer surgery, and they both made time for me. Had good chats, learned a lot & felt reassured as I started to replace black shapeless fear with knowledge. Read the (surprisingly good) cancer booklet. Did research online. Found some more people to talk to and built up my knowledge.
At the appointment when I was diagnosed I had started making notes on my phone, and as I did my research, this filled out into a multi-page document. I found this really useful. I also shared it with the wife, which helped her understand where I was at.
Who to tell? What to say?
Right now my prostate cancer is a secret - I’ve told only those who need to know (wife, boss, people helping me with research) and one or two others, just because I needed to.
Removing the prostate means no more ejaculation, though orgasms should continue. The surgery means incontinence (temporary or in a few cases permanent). And finally, it’ll affect my ability to get an erection. How bad it will be and (I think) whether it’s temporary or permanent varies enormously. So this is a big deal. Do I want people to know this about me? I keep thinking this will affect how people see me as a man.
And there’s cancer, the Big C. I don’t want people fussing, I don’t want to have to manage their emotions, and underneath it all, I don’t feel like the sort of person who gets cancer.
On the other hand, I want to alert men to the danger, because it seems nobody else will. Every woman in this country gets a breastcheck letter and a cervical check letter, which is great - but with men’s cancers we’re on our own. And I want to encourage the age >50 men in my life to learn the signs of prostate cancer and get tested regularly, because some cases are symptom-free. I myself have hardly any symptoms, just getting up for a wee in the night a bit more frequently and a PSA of 6.
So who do I tell? And is it possible to tell just a few people? Already, one person whom I told in confidence has blurted it out to a mutual acquaintance whom I may or may not have chosen to tell. That taught me that my news is a juicy piece of news. I was angry about that, however she’s a good friend and I guess this is what happens to secrets.
Right now I think I’ll tell my family, inlaws and my close friends. I'll also tell my peers on the management team at work and my peers on my charity board before I get treatment. I keep worrying at this problem.
The die is cast
It’s weird. The doctors gave me (me, who has no medical training) the choice of what to do next. I guess as an adult, I have the right to choose. Happily, when I asked their opinion, I got it. At my diagnosis, the consultant had given me some choices:
I could opt for radiotherapy - 35 visits to hospital over 7 weeks. For someone like me he didn’t advise this.
He did not advise leaving it a while to see whether the cancer got worse - I got the sense that this was a big no-no.
Surgery was his preferred option. If surgery it is, then I can choose traditional open surgery (surgeon with a knife) or robotic surgery (where the surgeon sits at the other side of the room and the surgeon drives the robot).
The consultant told me that if I wanted to look at robotic surgery he’d refer me to his colleague who could do this. In my research I’d found that a couple of buddies of mine had had the robotic surgery with said colleague and gave me good reviews, so I rang and made an appointment. In the meantime I did more research on robotic vs. open surgery for prostate cancer.
The day has arrived. The wife & I went to see the robotic guy. I’d made a list of questions for him, so as he examined me, he answered them. He offered me a date about 3 weeks hence. I said yes, so not I am booked in for robotic surgery to remove my prostate gland. Holy shit, this is getting real now, but it’s somehow comforting to have a decision made and a date. The die is cast.
Last night I had my last solid erection for a while, perhaps forever.
Last night I had my last ejaculation for ever. Bye-bye cum.
This is a really unpleasant prospect but it's far less bad than what my Dad went through. RIP Dad.
Today I have surgery.
In the hospital
On the Friday at 8am I reported to the hospital, did some admin and plenty waiting (thankfully I had my book) and went into theatre shortly after eleven. By five or so I was back on the ward and chatting with the wife, doped up to the eyeballs. I didn’t have much pain at that time. Surgeon dropped by & told me the op was successful. Wife went home.
I had six holes in my abdomen, one about 5cm long and the others about a centimetre each.
Now, to make space during the operation, they filled my abdomen with air - hence my innards were full of air afterwards. I felt very bloated. Also, it seems abdominal surgery makes you constipated (sorry, TMI?), making it harder to get the excess air out. My distended belly became very sore, and I got next to no sleep due to the pain - the nurses could do nothing for me. Only by late morning on Saturday did I manage to expel some gas and reduce the pain.
I’d just had my first night in hospital since I was born. After 24 hours I was getting a sense of the place: it seemed clean and well run. Someone came and took my bloods, a person asked me to choose what I wanted to eat over the next few days, and a physiotherapist came to talk me through the physio part of my aftercare.
The food was OK, there was a TV and there was wi-fi. My friend Clare had told me to bring a very long USB lead to charge my phone. Great advice. The people were professional, friendly & caring. Nevertheless, it’s not a place I would linger. I can’t imagine myself ever getting a good night’s sleep in that place.
Saturday night I slept for a few hours, and on Sunday morning I had my first shower (bliss!). The staff then passed me fit to be discharged so my wife came and collected me, 48 hours after my operation. Sore and weak, blinking in the sunlight it felt like I’d been in there for a week.
Prostate surgery +3 days: poo at last
This is my first full day at home. I woke still suffering from constipation and a painful, bloated stomach. The hospital had prescribed laxatives which I took last night and this morning. Sure enough, a rumble in the guts and a few farts were followed by my first poo in 4 days, thank God. Suddenly life is a little better. Now I can imagine the pain from bloating going away, and being able to move and sleep much more comfortably. Thank goodness.
Prostate surgery +4 days: chafing
When I spoke to men who’d been through this op before, they all mentioned that the catheter chafed like hell where it entered the urethra (yes, there), causing pain when walking.
The chafing started today. I put a bit of the local anaesthetic that the nurse had given me on the end of my nob. When the nurse changed my bag before being discharged from hosp., I got her to mark my thigh with a biro where the top strap goes. That was a smart move. I repositioned the top strap against the pen mark, which made it less painful.
Doubtless the chafing will continue and get worse. Roll on Friday when the catheter’s to be removed.
Prostate surgery +5 days: taking stock
Six days since my operation and my recovery’s going well. I’m up and dressed every day since Sunday. My pain levels are pretty low. Tomorrow I get the catheter taken out (a painful but welcome step). I’ll be incontinent after it comes out, but it should dry up over the next few weeks. My wounds seem to be healing, though I’m still sore. I’m weak too, though a little stronger each day (I managed a ten minute walk today). I take a nap after lunch, which I’m starting to enjoy! My bowels seem to be slowly returning to normal. According to the experts it’s hard to predict whether sexual function (I’m talking about erections here) will be restored, but at least the surgeon told me after my op that he was able to spare the relevant nerves. I have recently noticed some numbness around my right upper thigh / perineum, which I’ll ask him about.
Losing the ability to ejaculate is a bit like me going through the menopause, isn’t it? I’m no longer fertile. That analogy gives me a little comfort, strangely. Happily I missed out on the sweats and the mood swings!
So my thoughts are returning to the big C. On Monday next I should get a call from the surgeon to tell me what they found when they dissected the excised prostate gland - how much cancer, and where. I might get the all-clear then. Then I have to wait 8? weeks before I do another PSA test. If I’m cancer-free, it should give a reading of zero.
This whole journey has become something of a roller-coaster: I felt overwhelmed by my diagnosis, then as I did my research I became increasingly comfortable that the op was routine and had a high likelihood of success. Moreover, I was an ideal patient - young as prostate cancer patients go, quite fit and fairly slim. Going in for the op itself was scary but I trusted the staff. More recently I’ve felt pleased at my steady healing after the op. Now, however, I’m starting to think of cancer. I should be fine, it’s likely that all the cancer has been got - but still, there’s a doubt. Somebody has to be in that 5%. Oh well, I’ll just have to wait, I guess.
Prostate surgery +6 days: out comes the catheter
Up to the hospital for my appointment. I was early so I had a long wait and I’d forgotten my book - drat. Was brought into the room, was given an antibiotic jab for the catheter removal. The nurse removed the dressings and swabbed the wounds. Healing nicely, she said. No need for more dressings, just let yourself heal. Then the catheter was removed - not painful but strangely invasive. The nurse showed me how to fit a pad in my undies to catch urine (it’s a bit like a tampon) that I’d brought. I’m onto the next stage.
Then the nurse explained in detail what was going to happen next in the process, and what I might experience over the next 2 months and how I should behave. We talked about incontinence, and how it would be bad at first but would dry up over time as I learned anew how to control my bladder. We talked about sexual function, and we talked about what physical tasks I should avoid for the next 2 months. She said I’m allowed to drive. The simple rules are to rest, to listen to my body and not to do any heavy exercise or lift anything that’s too heavy to move easily with my foot.
I really did feel in safe hands with these knowledgeable, professional people. They clearly knew what they were doing, and the care processes all seem to work. I’ll do my best to follow their instructions.
Later in the day I had a call from the same nurse, just checking I was OK and seeing if I had any concerns or questions.
Prostate surgery +9 days: continent
I was promised incontinence and I don’t have it, bar a few dribbles. I wore pads for the first two days after the catheter came out, but I’ve not bothered since.
As the nurse warned me, I don’t get the same feeling telling me that I want to pee, so I’m learning a new way to notice that I need to go. It feels a bit like pressure in my lower abdomen - and if I don’t notice it, it turns into bad cramps.
And as for erections - so far, as expected, nada.
I watched a Youtube video of a Da Vinci robotic prostatectomy, all 1h 45m of it. It increases my respect for my surgeon. Also, it makes me realise how much cutting they had to do in order to reach & remove the prostate. I’ll be taking my recovery even easier now.
Prostate surgery +10 days: mental health
As you may have picked up from the tone of this blog, I’m in a good place, mentally. Once I got over the shock of my diagnosis I’ve been pretty much calm throughout. I took up meditation last year after a meditation workshop at Dzogchen Beara in west Cork, which I have been getting a lot out of. I’m sure that has helped.
Also, I opted to share my diagnosis with my nearest and dearest, which meant I got lots of support from them, though it was tough to bare my soul. (I’m trying to keep the news from people whom I’m less close to.) I’ve found carrying around this secret to be somewhat corrosive on my soul, so it’s good that nearly everyone who’s important to me knows my news.
Prostate surgery +11 days: CANCER FREE
The surgeon called me last night to explain that he had received the histology report on my excised prostate gland. Cancer was found on both the left and the right side, but importantly it was contained within the capsule, i.e. hadn’t reached the edge. Therefore, he said, the cancer had not spread beyond the prostate gland, so no follow-up is required. I’ll do a PSA test in 6 weeks, but that is expected to read zero.
I am a free man. I am cancer free. I am a cancer survivor. It’s been just 7 weeks and a few hours from diagnosis to the all-clear. I’m stunned. It’s been a heck of a journey. Now I need to focus on recovering from surgery. I’ve a fair way to go there, but making progress.
Update: the Irish Cancer Society has kindly allowed me to post updates to this journal. Here's one:
Prostate surgery +20 days: recovery going well
Nearly three week after my operation, here’s where I’m at:
Had a physio appointment a few days ago - she is a specialist in bowels, bladder & sexual function. This was brilliant - I learned loads. Also, she gave me various pelvic floor exercises to do, and I’m doing them. It’s tiring on my abdomen.
I am still pretty much continent, with just the occasional dribble. The physio told me to teach my bladder to fill properly by only going for a wee when I actually need to go - she said to aim for every 3 hours or so during the daytime. Last night I slept 7.5 hours uninterrupted by my bladder - for the first time in a long time - brilliant!!
I’m following the instructions not to do heavy work, which is a bit frustrating. However I’m getting back some energy to do non-strenuous tasks. As instructed I’m getting out for a walk each day, building up the time. Today I walked for 40 minutes. I’m still having a siesta after lunch, which my body seems to need, every day.
I’m currently only getting the faintest beginning of erections, though everyone told me this is normal & to be patient. The physio recommended sexual activity, to help restore the neural pathways of erection.
Not much pain now, just some soreness in my abdomen after I’ve been active. Am still taking paracetamol when I need it, usually at night. Oh yes, and my poos have finally returned to normal :)
And what’s next? I’m back to the physio in a month and I see the consultant (before which I need to get a PSA test) in 2 months. Other than that, I just need to keep out of trouble!
Diagnosis + nearly 4 months, surgery + 12 weeks: back at work.
So I'm back at work for about a month. Everything's back to normal. Except it's not. Work's the same, I'm a bit different.
Physically, I'm doing quite well. I'm able to stay up and be active for a full day, and I'm in no pain apart from the odd abdominal twinge towards the end of a long day. I'm able to do all the physical tasks that I've tried. However, I tire more easily so I have to look after myself. Sexual function (i.e. erections) is still much inferior to how I was before the surgery - I'm hoping for some improvement in future, but it doesn't seem to have got any better in the last 10 weeks. Am pleased to day I still suffer no incontinence apart from the odd tiny dribble. I'm doing most of my pelvic floor exercises, most days.
In terms of treatment, I have seen the hospital physio twice now & I see the surgeon this week. I did a PSA test in preparation - the score was below 0.1, which I think is good.
Mentally though, things are a bit different, and whereas I expected the physical changes, the mental side has taken me by surprise.
I've been thinking big thoughts about my existence. I reckon I've probably 20-30 active years left, and my thoughts turn increasingly to how I'll make the most of them. Also, I have a new perspective on my job. I work with nice, caring people and the job has a lot going for it. However, I do keep thinking that I want to spend the next few years working at something that actively brings me joy, if such a job exists. Thinking that through and perhaps making a plan is going to be a big task.
Also, I've been feeling miserable some days when I was first back at work. I seem to be over it now, but those days were tough. I reached out for support and I got it. If it recurs I'll reach out & get the support that I need.