Fight Club offering advice and guidance to people affected by bladder cancer

Bladder cancer patients are reaching out to support others affected by one of the UK’s most common cancers.

As part of Bladder Cancer Awareness month, members of the Bladder Cancer Fight Club, based at Glan Clwyd Hospital, are inviting patients and their families to join their group to access support.

The monthly group, which works in partnership with the patient-led national charity Fight Bladder Cancer, allows people affected by the cancer to share advice, guidance and experiences.

Bladder cancer, which affects both men and women of all ages, is the fifth most prevalent in Europe, and is most commonly identified by the presence of blood in a person’s urine or repeated urinary tract infections.

Llandudno resident Dylan Williams, who received treatment for bladder cancer in July last year, is now urging people to take part and access support.

In March last year, Dylan raised concerns with his GP after finding blood in his urine. Within four weeks, urologists at Ysbyty Gwynedd had identified a malignant grade 3 tumour in his bladder and referred Dylan for treatment at Broadgreen Hospital in Liverpool.

Dylan said: “At first I thought maybe I had an infection or something, so saw my GP and didn’t think much about it. They called me back that same afternoon and I immediately went for a referral for more tests.

“From there, within the space of a few weeks I had a biopsy at Ysbyty Gwynedd, was told I had a significant tumour and was referred to the Royal Liverpool Hospital for further treatment.

“By that point there was no option but to have my bladder surgically removed. It was too late for chemotherapy, so basically surgery was the only option. That was explained to me by my consultant Beth Hickerton, who was absolutely amazing.”

“I was meant to be in Liverpool for 15 days, but was out in six – you can’t keep a Welshman down!

Since undergoing surgery in June, Dylan has received ongoing care from the team at Ysbyty Gwynedd and support from his friends and family. He also joined the Fight Club group in January, and is now urging people affected by bladder cancer to find out more about the support available.

He said: “It’s a strange experience finding out you have bladder cancer; you feel well and as if nothing is wrong, and it’s astounding how you can be given a diagnosis when you’re feeling so well in yourself.

“The turnaround from being well to diagnosis is horrific. The whole process is very unsettling, and you berate yourself that you could have done something about it. It’s traumatic.

“It’s at that time when the support of your family and friends is invaluable, I had immense help from those around me.

“For the Fight Club group, we really want to be there to provide that additional layer of support, which is so important at such a difficult time. The chance to talk to people who have been through it and had similar experiences is absolutely invaluable.

“We have members who have had various procedures and experiences, who can say ‘oh this happened to me’ and point members in the right direction, and share various tips and advice, things that work.

“There’s so many people out there who could benefit from working with us, and we want to work together to help and share.

To mark Bladder Cancer Awareness Month, the Glan Clywd group has opened a new Facebook page featuring information, advice and online peer support.

The page also features information on upcoming meetings and how people can join the group, which meets at the North Wales Cancer Centre on the third Monday of every month from 4.30pm.

Heather James, Urology Oncology Clinical Nurse Specialist, said: “Early diagnosis is crucial to improving the likelihood of beating this cancer, and it’s essential that more people know how to spot the symptoms. 

“The main thing to look for is blood in the urine, and anyone who does this should go and see their GP as soon as possible, even if it only happens once. 

“A number of conditions can cause blood in the urine, but it should always be investigated and if no infection is present a referral to a consultant should be made. 

“Other symptoms can include recurrent urine infections, pain when passing urine, having to urinate frequently or lower back pain on one side. Some patients also notice a change in the smell of their urine.”

The health board has launched an ambitious new programme to improve services for bladder cancer patients.

The Transforming Cancer Services Together programme, which is funded by Macmillan Cancer Support, is also looking to improve the experience of people with breast, lung, colorectal and prostate cancer.

The programme is looking for people affected by cancer to share their story in order to shape better care for patients.

Fight bladder Cancer CEO, Dr Lydia Marakoff said “As a patient-led charity specialising in supporting people affected by bladder cancer, we are thrilled to be supporting Dylan and the patients, carers, and staff at Glan Clwyd Hospital with this amazing group.

“We have a growing national network of Fight Clubs. Fight Clubs were a fun and energetic concept launched by our founder Andrew Winterbottom several years ago, and now it’s really catching on as a great way to support patients. We particularly love this Glan Clwyd group which puts patients like Dylan in the lead so that it truly meets their support needs.”

Fight Bladder Cancer is steering national Bladder Cancer Awareness Month across the UK – aiming to raise awareness of this neglected cancer which receives less than 1% of UK cancer research spending, despite 18,000 people being diagnosed annually.