Andy's Story

The Beginning of a Medical Journey

Five years ago, I was having trouble needing to pee in the middle of the night, especially after a few beers. I felt like I really needed to go but nothing would happen. I was aware of this for a few months and in January 2019, I discussed it with my GP who referred me to a Urologist, a series of tests took place, to include an examination of my prostate via my back passage – with the dreaded glove! I had an ultrasound scan of my bladder, MRI scan, PSA blood test and biopsies which were a little eye watering and felt like a stapler firing off in my back passage! That said, none of the tests were anywhere near as bad as I initially thought, and the staff were incredibly supportive.

All of Andy’s results were assessed by a multi-disciplinary team (MDT) who work together to ensure each patient gets the right treatment for their own individual diagnosis. Six weeks later, Andy was told by the clinical nurse specialist (CNS) that he had a grade one cancer and it was contained within the prostate and at that moment it hadn’t spread to any other areas within his body.

Being told you have a cancer is life changing, walking out of the hospital my head was going at 90mph. My wife Val was carrying booklets given to us from the nurse on “Early prostate cancer. A booklet that later helped me understand my diagnosis and helpful guidance on what to expect next.

Early (localised) prostate cancer | Macmillan Cancer Support

I had Grade 1 Prostate cancer which bizarrely enough felt like I’d won the lottery, Grade 1 prostate cancer has a very high percentage of survival beyond five years. I feel quite guilty really, what was even better for me was my cancer hadn’t spread. I know I’ve been one of the lucky ones.

I know lots of family and friends who have been affected by cancer, and sadly, some of our closest are no longer with us, with age being no barrier. At the beginning I didn’t have any symptoms other than needing to pee in the night. Most men would put that down to getting older. Following my diagnosis, I was offered multiple options of treatments plans, from surgery to take my prostate out, to a watch and wait approach, along with endless information to explain them, and an opportunity to see my consultant face to face to discuss them.

I talked it all through with Val my wife, who has a much clearer understanding of cancer than me, as she works as the lead cancer care co-ordinator for North Shropshire PCN, her support and knowledge of the process has been invaluable.

We decided to proceed with a plan called active surveillance which at the time was the best option for me and my lifestyle. Leaving me to lead as normal life as possible, coping with the extra trips to the loo in the night. All of which carried on for four years supported by regular PSA tests and scans to further monitor me. I had a safety net that I could speak with my CNS nurse should anything change or should my PSA tests and scans have highlighted anything different.

Surgical Decision

In Jan 2023 a surveillance MRI scan showed a change. I was called to see my consultant in Stoke, Mr Christopher Luscombe. An expert in this field and total gentleman which immediately gives you a comfort. Once again, options were discussed, I could have had a biopsy under general anaesthetic, continue as I was, or proceed with surgery to remove the prostate. We came away and talked it through overnight. I decided with my wife, that it was time to take this little tinker out, four years of active surveillance had been the right choice for me and one I don’t regret but the scan shared enough concerns for me to want rid of it.

Facing Surgery

Having decided to opt for surgery, I was told about the many possible and definite side effects of the surgery, which included erectile dysfunction and incontinence of urine. I hadn’t had major surgery before and took the time and effort to get myself in the best place for it, following the advice from Mr Luscombe. Prior to surgery I enjoyed walking but increased my exercise to a min of 10,000 steps a day and did this together with my wife and friends to aid my recovery, all of which I’m convinced helped.

Adjusting to New Realities

Two weeks later I returned to Stoke to have the catheter removed which was in place to allow me to pee, and that is where the fun began! No one had quite explained to me what I experienced next… from the minute the catheter was out and to stepping down off the bed to go home, it was like a freefall waterfall, a tap on full blast, and remained like this for weeks to come. I honestly expected a dribble, perhaps an odd accident, but no, this was a whole new game changer. Not everyone will experience what I did, but you need to know it’s possible!! And you need to prepare for it both mentally, physically, and practically!

Navigating Life with Incontinence

Andy’s wife Val said it was hard to hear what might be in store for the future, but through planning and organization, the couple began to make things better. Val said: We were told Andy could be incontinent for the rest of his life, which was difficult to imagine. Andy was down to have an incontinence assessment, which we were told was a lengthy wait so we decided we needed to press on in life and ensure that whatever we decided to do or go to, needed to be planned for. Andy wore incontinence pull-up pants in the first few months, there was no other option, steps around the house progressed to short walks outside, knowing he was in striking distance of the house for the toilet. Short trips in the car to family and friends were meticulously planned, the glove compartment in the car was stocked with clean pull-ups, wet wipes and dog poo bags! Andy realized through his research and a process of elimination that dog poo bags were the right size to hold the soiled pads in, they are quite big and heavy, but when soiled they definitely won’t fit in trouser pockets,

Advocacy and Support

I am additionally lucky that Val works in cancer care, she sees firsthand how life changing a cancer diagnosis can be, she’s the one that has encouraged me to share my experience, and to ensure that through planning and being able to access the right facilities, life goes on beyond a cancer and you can live well.

As well as supporting each other, the couple are good friends with the Roberts family who lost their son Will to a brain tumour in December 2022. They have taken part in many fundraising activities together, raising over £36,000 to date for charity with more events planned for this year. Andy’s aim now is to focus on raising awareness about Prostate cancer, PSA testing and the long-term implications following treatments.
Prostate Cancer UK | Prostate Cancer UK
Check your risk in 30 seconds | Prostate Cancer UK
PSA test | Prostate Cancer UK

Sharing Experiences and Building Awareness

Following his diagnosis, Andy and Val were very open with their friends and family about what was happening, and their candor led to others coming forward who shared they too had got prostate cancer, and between them they shared the ups and downs, aided by laughter through conversations which ordinarily would be taboo. Being able to laugh together has really helped each and every one of us, and my friends, and hopefully anyone reading this. People don’t realize how serious cancer can be and how important an early diagnosis is. We lost Will Roberts at the age of 26. My older brother passed away in 2023 after initially being diagnosed with throat cancer and later prostate cancer. I chose to share my diagnosis with my family. I have a twin sister, two older brothers and sisters all of whom have family. I want to do everything I can to help others and raise awareness about risks.

Understanding Risk Factors

Prostate Cancer UK shares some key facts around the risks that you should take a moment to read.
1 in 8 men will get prostate cancer.
Prostate Cancer Risk Factors | Prostate Cancer UK | Prostate Cancer UK

• You are two and a half times more likely to get prostate cancer if your father or brother has had it, compared to a man who has no relatives with prostate cancer.
• Your chance of getting prostate cancer may be even greater if your father or brother was under 60 when he was diagnosed, or if you have more than one close relative (father or brother) with prostate cancer.
• Your risk of getting prostate cancer may also be higher if your mother or sister has had breast cancer or ovarian cancer.

Coping with Post-Surgery Challenges

The couple have not shied away from the impact cancer has had on Andy and approached his recovery with humor and good organization. The operation has caused erectile dysfunction and rendered Andy’s penis incapable of using a urinal as he used to. I have to be really careful using urinals, surgery severed lots of nerves and reduced the blood supply that the penis relies on comfortably to urinate through, so I now have to sit down and guide the little fellow into the pan. I knew there was a very high chance of erectile dysfunction and after the operation there’s a lot of retraining to do down there, it’s a totally different organ now. It’s not capable of doing what it did prior to surgery, but we have received support, continue to talk and laugh openly across the tea table about this. Viagra and Vacuum pumps can be the height of conversation sometimes!

Dealing with incontinence was initially very difficult, just standing up from a chair would lead to a complete flooding. The early days were tough, movement and gravity could set the incontinence off and I really wasn’t prepared for that.

Empowering Solutions: The RADAR Key Project

Val has an Uncle who’s also had bowel cancer, which has left him with a stoma bag, during the same time Andy had surgery, she says listening to the pair of them chatting about peeing and poo remains quite hilarious at times, but it’s just great that they’re both comfortable enough to do so. Val was the force behind Lingen Davies’ radar keys project after one of her patients Danny Lloyd-Jones was given a stoma bag for life following his bowel cancer treatment. Danny mentioned how he was struggling to get out and about and so Val asked if Lingen Davies would fund a project to provide radar keys to those whose cancer had left them with long-term side effects. The keys enable them to access facilities in more places – reducing stress and worry.

Advocating for Better Facilities

Andy welcomes the use of the RADAR key but said he is now focused on raising awareness about the need for bins in male toilets. Many bins in toilets were replaced by hand driers post Covid and Andy wants to turn this around for the benefit of others. His temporary solution is resorting back to the dog poo bags which he can use without worry. His own employers, Farr & Harris in Shrewsbury, installed bins in the men’s toilets to enable Andy to return to work. When he travels places they aren’t available he politely shares the importance of having one with a member of staff – and has received some positive outcomes.

With the support of Lingen Davies and the Boys Need Bins campaign he relishes seeing them as far and wide as possible.

It’s an issue, it’s important to know where bins are, if there isn’t one in the cubicle which is often the case, there should be one outside in a wash basin area. It’s important in current times for everywhere to have proper sanitary bins and not just for women. Many places don’t have proper facilities to take men’s products. When you look at the volume of sanitary products in the shops the vast majority is for women. Men also need products to cater to incontinence issues be it for pee or poo, we aren’t really looked after.

It’s such a minimal choice and believe me I’ve spent many a hour up a supermarket aisle comparing these products and resorted to using ladies due to the lack of choice. We want to raise awareness about the whole subject and break the taboos. Bins aren’t a hugely expensive outgoing; they make such a difference.

Spreading Awareness and Advocacy Efforts

Friends and families have become very aware of this and we’ve made them aware the alternative is a soggy and warm dog poo bag if you haven’t got a bin. The couple plan to write to their MP Helen Morgan to join the campaign linked with Prostate UK and highlight the Bins for Boys campaign – something Lingen Davies Cancer Fund will be promoting later this year.

Val said: “It’s been a hugely stressful and emotional time for Andy, I couldn’t be prouder of him for sharing his experience, he simply wants to make it easier for anyone facing a new diagnosis of cancer that would benefit immensely from such minor changes amongst our community.

I also continue to share with the help of my amazing team and colleagues from Lingen Davies that early cancer diagnosis is key to being more likely to be treated successfully if caught in the early stages. Andy shared he knows he’s been incredibly lucky that he had Grade 1 Prostate cancer by taking his symptoms to his GP in a timely manner.

Cancer signs and symptoms | Cancer Research UK