Alun, from Newtown, was diagnosed with prostate cancer in 2018, which had spread to his hip bone, a course of chemotherapy followed.
Very sadly Alun passed away at the end of December 2021. His story – written over the course of his treatment in 2018 remains here to give guidance, information and inspiration to others.
I was in full time employment and thought myself to be in very good health. I celebrated my 60th birthday in summer 2018, and we had a big party and it was a very good night; everybody had a great time. But in the background there was a bit of an issue that I hadn’t spoken to many people about: I was going to the toilet a bit too often.
I sort of pushed it to be back of my mind, but started to google it and the word ‘prostate’ kept appearing. I started off by cutting out alcohol and altered my diet, and this did actually lessen the symptoms a lot. But I had already made a doctor’s appointment five weeks away. The night before, I nearly rang up and cancelled; I wasn’t a man for going to the doctors if I didn’t need to. I work in a psychiatric hospital and mentioned it to someone at work. She told me not to be so stupid and gave me her appointment time for the following day. Of course I then felt duty bound to go, so I went along to the GP.
I asked [the GP] to pardon me for wasting his time, as I really did think there was nothing wrong. He checked my prostate but said he couldn’t tell anything for definite. He gave me a blood test; again, I nearly told him not to bother, but as I was there, I thought “don’t be so stupid” and went ahead with it.
I got a call the following Monday asking me to come in the next morning. By now the alarm bells were ringing loud and clear! They didn’t give me any information over the phone but when I turned up for my appointment they told me that my PSA level was 37.5; then, I knew I was in trouble.
I was referred very quickly to see Dr Srihari, a consultant in Urology at the Royal Shrewsbury Hospital. I was given a bone scan, and this initially came back clear. I had a prostate biopsy, which was a painful experience, and waited for two weeks for the results. This was the crunch; unfortunately I was told that I had stage 2 prostate cancer. I was given some tablets to take straight away and told I would start injections in a couple of weeks. I was relieved at this point; it didn’t sound too bad.
I was also sent for an MRI scan to make sure the cancer had not spread further. I didn’t hear anything for a month and I thought, “no news is good news”.
I was called back in for an appointment at the Lingen Davies Centre, which I thought was just to sort out the plans for my treatment, so I was relaxed about it. Unfortunately, the doctors told me that the PRI had thrown a spanner in the works; it had shown up a small dot on my hip, and at that point they didn’t know what it was, so they sent me up to the Robert Jones and Agnes Hunt Orthopaedic Hospital in Gobowen. I had another MRI, CT Scan and bone biopsy.
I had another appointment at Shrewsbury, and I was very tense. I knew this was the big one, and it could be a life defining moment. I knew that it could be bad news so I’d prepared myself for the worst. Unfortunately, the doctor told me there was cancer in my hip. This changed my treatment regime along with my prognosis.
I was put on chemotherapy, which I’m starting today. Dr Srihari tells me I may have five or six years if I take all the treatment. I told him that Bill Turnbull’s consultants have told him they’ll get him to 80 so he needs to do better than 65 for me!
I’ve spoken to a lot of people who’ve had treatment, and whether it’s going to be a nuclear holocaust or a walk in the park, I’m not sure! There’s no way out of it, because I was going to live as long as possible. I’m glad the treatment is local.
I’ve spoken to a lot of people about what’s happening to me; I’m well known locally because I do bouncy castle hire so I meet a lot of people. I’ve started a blog, which I find very cathartic. I had a bloke recently thank me for posting it as it had made him go for a test and it turned out he had elevated PSA. His wife messaged me too, she’s been trying to get him to go to the doctor’s for two years and he’s going now.
People make excuses not to go to the doctor, or they think they’re too busy, but it’s so important. It’s frightened a few of my friends; I think it’s shocked them that someone of my age has got prostate cancer. Some of them have said they wouldn’t want to know, but not finding out doesn’t make it go away. Yes, you have the worry and the anguish but at least you have a chance if you get treatment.
If you leave it too late and have a really short prognosis; I don’t think anyone would say they would rather that than be treated.
7th November 2018 – I’ve not been poorly really; so far, so good. This is my third chemo treatment, and I’ve got three more. I’m on the Stampede drugs trial, taking a drug normally used for diabetes that’s being trialled for prostate cancer patients.
I’ve been going to a lot of football – I follow Shrewsbury Town and went down to London for the Wimbledon match. I do everything while I’m well. I don’t want to take it for granted that I’m going to be well, but I think if I feel alright today, I’ll probably be alright tomorrow and I can make plans. I have to book tickets to matches ahead, but I always book them for the big matches and send me daughter or son if I can’t make it. You have to assume you’ll be able to do things.
I had a couple of pints last time we watched the football and I was alright, but that was the last time I had a drink at all; I’m mainly keeping off it for now. I get a bit lost with the days as I’m not working; I have been going in for staff meetings just to keep in touch with everyone and it keeps it open for me to go back if I want to. At the moment I don’t know if I will; but it’s strange letting go. Even if it wasn’t for the cancer, retiring would be a big thing. I’ve been working since I was 14, and nobody, on their death bed, says they wish they’d spent more time working.
I’ve been doing a bit of volunteer work in the Cancer Research shop in Newtown; I was having banter with the women who work there and I started to feel more myself again. I enjoy doing a half day and they want me to do Saturdays but that’s football day!
The other day I was trying to paint but I was too anxious to sit down, never mind paint. It’s an odd prognosis, being told you’ve got five or six years left. I’m grateful it’s that long, but you know you’re going to die, but at the same time you’ve got time to do lots of things. Part of my head thinks I could have had this for a few years and I haven’t felt a thing, so what’s going to change? Having treatment, it’s bound to be better. I’m looking forward to the future, and the anxiety has gone.
I have a few tears occasionally – if I see someone I’ve not seen for a while and I haven’t told them, I do get a bit emotional. I was supposed to go out with some friends the other night, but as the day got closer I had to message them and tell them I couldn’t go; I couldn’t risk getting upset in front of them. Had it been someone’s wedding or something I would have gone because it wouldn’t have been about me, but it just felt a bit too much.
Generally speaking though, I’m alright. Dr Srihari doesn’t want to see me for a while, which is a good sign. I’m throwing myself at the fundraising now; I don’t want to set a target but we’ve got a few things going on so we should raise a bit.
19th November 2018 – Alun is sat with his hands in a bowl of water to help his veins open up to receive the chemotherapy drip. “I’m feeling good; I’ve gone back to work as the time was dragging a bit – for a bloke who’s been on the sick I’ve never been so busy! I’ve been helping out at my local church with Meals on Wheels. It’s an important service and really helps people; some of them are really lonely. I’m going to my daughter’s for Christmas, but I’m working in the evening – I don’t mind working and they’ll be playing on the Xbox anyway!
I’ve got one more chemotherapy treatment after today, then a scan at the end of January. I’ll get the results at the end of February, and if they’re OK, that will be the end of the chemo. I’ll have to have hormone injections indefinitely, but the treatment seems to be working- my PSA level is 0.05 now and the cancer isn’t doing anything. It’s dying off to a degree. The hormones give me the occasional hot flush and a bit of a drop in libido, but nothing significant. I’ll be so relieved after my scan results. The indicators all look good but I want to hear it officially.
I’ve been doing a lot of fundraising – it makes you realise that people are so kind and they do want to help. There’s just been an article in the Powys County Times about prostate cancer; it’s so important to get the message out. You’re not quite so cocky when it happens to you – I wish somebody had told me more about it.
Sometimes I find myself crying but that’s nature’s way of helping you cope with what’s going on. Life changes, doesn’t it? You see how nice and kind people are and start to see the best in everybody. You deal with what you’re given.
Very sadly, Alun passed away in December 2021.
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