Prostate cancer: ‘It’s gone, but it has left its mark on my wellbeing’

“It’s the word cancer that scares the crap out of everyone. It’s like what you see in the movies, when you are sitting across from the doctor and they say to you you’ve got cancer. I was in a daze and I think my wife and I were like that for about three or four weeks after. It’s just like a death, I couldn’t comprehend it.”

Up until this point in his life, Raymond Poole had predominately been working overseas but this news was going to ground him to his home and office in Blessington, Co Wicklow; any future trips where going to require serious planning on his part.

The diagnosis was prostate cancer, little talked about and more common than the lack of conversation suggests.

Poole wants to break that mould and he is starting by telling us his story.

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“I go every single year, since my mid-40s, for blood tests and one of the blood tests I insisted my GP do, although at the time he thought I was way too young, was my PSA levels,” says Poole.

The test measures the amount of prostate-specific antigen (PSA) in your blood. “Funny enough, when I was back with him recently he asked me how we discovered the cancer. I said, ‘You did the PSA test,’ and he said, ‘Do you know, I don’t even do that for myself?’

“People say PSA can give a misreading which is fine but it’s the only mechanism we have for measuring it. But if you follow it up with an MRI, you will know for definite whether you have it or not.”

An initial result showed a level of nine in July 2016 and, after a follow-up test four weeks later, it had increased to a level of 10. An internal examination was done but nothing was felt.

Multiple samples were taken during a biopsy in December of that year but the results from that clinic returned clear despite a PSA level of 20 at that stage. But, as Poole points out, the levels don’t always tell the whole story. It was only when he got sepsis after the procedure that his journey took shape.

“I flew out to the UK the next day because I was working overseas and got sepsis which, thankfully, I did. I say thankfully because that led me into about seven months of infections and monitoring. I went to a different hospital and changed clinic because I didn’t feel comfortable where I was going. I went to the Beacon.”

Another biopsy was done in July 2017, a year after investigations into the PSA readings had begun. “They only did five samples and three of them were cancerous but it was an aggressive form of prostate cancer. They have a scale called the Gleason Score; the highest is 10 and I scored nine. There wasn’t really an option, they had to get it out. They also took out some other plumbing bits I suppose that were in there. That happened in October 2017.

“What they do is manage you with your bloods. It was every three months, now it’s every six months so you monitor that and they say if you get through five years of nothing, there’s an 80 per cent chance of getting through 10 years of nothing so I’ll take that.”

The aftermath of having prostate cancer removed from his body is what has prompted Poole to start the awkward conversation. For him, although the cancer may be gone, it has left its mark on his mental and physical wellbeing. His body is not what it used to be and neither is his marriage.

I was operated in October and I think I had the full pull-up nappies until February the next year

“Post-surgery the neurology nurses kept saying to me you’ll have leakage and you’ll have to wear incontinence pads and I said that’s grand, no problem. When I went back to them after my first month, I said: ‘You’ve seriously got to change the word leakage because to me that’s a drip, I’ve got a frigging tsunami!’

“I was operated in October and I think I had the full pull-up nappies until February the next year. I gauged my improvement on ‘Oh great, I only had to wear five nappies today.’ When I got down to using the pads, they start at level four; I made it my goal to get down to the next levels.

“I wasn’t one of the ones the leak ever cured itself. I’m stuck with the frigging things for now – pelvic floor muscles, done them all. Most days you can cope with it; the odd day when you get tired you just get frustrated and annoyed.

“I do training, I run two conferences and you are standing up there in front of people and you are praying there isn’t that warm fuzzy feeling below your belly button but the way I look at it is there’s plenty of women who I know, from childbirth, have never gotten their continence back either. Holly Willoughby is a great example so every time I’m having a moment like that I say to my wife I’m having a Holly. I’ve got to cross my legs or if I’m sitting down watching something funny I think, okay jeez, you have to watch yourself here, it’s dangerous territory.”

Unfortunately, incontinence is not the only thing that Poole has suffered post-surgery.

“There is that and then there is what came with it as well – erectile dysfunction. Total for me; they couldn’t save any of it. They forewarned me and I said that’s fine because we have our children, we are not looking to have any more children. I’m now 56 and my wife is the same age so we said that doesn’t bother us, you know it is what it is, I’m alive.

“There is a mourning there that goes on, your closeness of your relationship dies. There’s a mourning period for both of you because that intimacy has gone, that closeness that you can get, that’s gone. We are still working through that. We are very fortunate we’ve known each other since we were 10 years of age. She was my first girlfriend; ever since I was 15 we have been with one another.

“After I had the operation I had to go for physiotherapy, it’s internal physio they do for your pelvic floor. I just broke down. I said to my wife I just can’t do this one, I’ve reached my limit. I was sexually abused as a child so that has an impact on your mind. If you’ve been abused, an internal investigation can really set your mind off the cliff edge.

“I think I just went into autopilot during the initial stages. I think I decided I had cancer, I needed to get it fixed, I needed to get examinations. I think you sort of remove yourself from your own body, my daughter was explaining this to me. She said she’d read up on something and I totally agree, and you don’t know you are doing it until someone goes and writes about it, but apparently if you are suffering any sort of abuse, you almost create a persona who is the individual who was abused. You remove yourself from that part of your body because if that was you, you can’t cope with it. I just go in and say right I’ve got to do this. I just ignore everything and I just go ahead with it.

“I think what happened, when I was due for the physio, was that I was at a very low ebb. I was weak and emotionally weak after the operation and everything that had gone on, and I just thought this is one step too far for me right now. I just can’t do this. I never went for it in the end.”

After a chat, concerning his issues with the physio, it was suggested that it might not have made a difference any way; Poole had been doing everything right since surgery and there was no improvement.

I honestly believe it's those surrounding the patient who have the biggest journey at times because the patient is preoccupied fighting the illness

Despite being put through the ringer himself, Poole had concerns over his wife throughout the whole process, at times he almost thought he had the easier part of the journey.

“Everyone concentrates on the patient. Sometimes I think it’s easier because you are sick, it’s your body, you can feel what’s going on and you can control that, right? But for my wife, she had to sit back and look at me, I think that’s far harder. I honestly believe it’s those surrounding the patient who have the biggest journey at times because the patient is preoccupied fighting the illness. The carers are looking on helplessly not being able to do anything and, to me, they are the big champions in all of this.

“She gets very nervous if she thinks I’m getting ill or tired. One of the things about prostate cancer if it does come back is it attacks your bones. If I say I’m sore or hurting, she gets a little bit nervous.

“From the intimacy part, because it’s affecting me, I’m not thinking that whole sort of urge. The sexual side of things is just not in my head at the moment but she didn’t have cancer, and there is that. We talk about it and she often says to me, ‘Sometimes I feel we are losing one another, something is lost.’ That’s why I said it’s mourning because something has died. Doesn’t mean it won’t come back, the closeness but, for the moment, you are mourning that loss.

“You have two options with erectile dysfunction: you either get a pump or you get an injection. You have to get an injection into your penis to make it stiff and I tweeted the other day the only thing that’s stiff in our bedroom at the moment is the sheets because the wife starches them, because that is just the way it is, you need your humour.”

There is no doubt that cancer has changed Poole, his story makes that evident but he’s happy to share it to get people talking about it, to get men talking about it. Many reading this may have cringed already at the thought of what Poole has been through and is still going through but, as he says himself, that’s life, it’s all part of it.

“Cancer is just another thread in the fabric that has woven me today because I believe everything in your life weaves who you are. The decisions I made when I was 30, I would not have made at 40, and at 50 I wouldn’t have made the same decisions as I did at 40; it’s just making you who you are. I am not typically one of those who’ll collapse in the corner under the enormity of anything; I always try to look for a spark of light somewhere. I believe there is a bit of light somewhere, you just have to try to find it.”

Poole holds conversations about the subject via his social media platforms. He just wants to get the conversation started and bring an awareness to the cancer that people might have considered “just for old men” in the past.

Writing about his journey has helped Poole deal with his experiences and put a humorous slant on the difficult and often awkward situations in which he has found himself.

As a fundraiser for Unicef Ireland, Poole is releasing a book in October, Nothing's So Bad That It Couldn't Be Worse. The title comes from a saying Poole's father, who is going through treatment for kidney and bladder cancer, said to him.

“Do you ever hear another man say to another guy, ‘Let’s go for lunch?’ They’ll go for a pint and talk about football, GAA, rugby, anything but their health.”