An Edinburgh dad has told of the life-changing experience when he felt an abnormality on his neck that turned out to be incurable cancer at just 40 years old.
Rhys Nealon, 43, from Leith went to his GP after finding the lump in 2019 and after repeated tests, he was diagnosed with Metastatic Melanoma, which is an aggressive form of skin cancer.
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Rhys spoke of the fearful weeks spent waiting to find out the full extent of the cancer and said it was terrifying knowing "it was bad, but not knowing how bad it was."
Around eight weeks later the dad-of-two was told that the super spreader cancer had extended to his right lung, and lymph nodes and that if there was any chance of survival he would need to undergo treatment straight away.
The dad was treated as part of a two-year immunotherapy trial and, while this was effective, there were life-threatening side effects including inflammation of the lungs that forced him to pull out after just six months in the cutting-edge treatment plan.
Speaking to Edinburgh Live the dad said: "In November 2019 I found a lump and had been back and forth to my GP getting tests to find out what it was.
"I was feeling 100 percent so initially I wasn't worried, cancer hadn't crossed my mind I thought it could just be a fatty lump - there are so many reasons behind having a lump on your body.
"When I was told it was metastatic melanoma and how quickly it can spread I was in total shock.
"It was a long drawn-out process to find out how bad it was. Around two months later I was told it had spread to my right lung and lymph nodes. That was a really stressful time, I knew it was bad but not how bad it actually was.
"I had googled the prognosis at the time which is the worst thing you can do and saw a stat that said there was around an 85 percent chance I'd be dead in five years."
For the best chance of seeing his little girls grow up, the dad was offered treatment straight away and put into a cutting-edge two-year immunotherapy trial to combat the disease.
He explained: "Covid was starting to become a thing and it was a terrible time, luckily my treatment continued to go ahead but it was a surreal experience.
"I was driving across Edinburgh which was completely empty to an empty hospital where I would sit and receive treatment.
"At one point I had to be isolated alone in a room for 24 hours, that was really hard not being able to see anyone or speak to them.
"The immunotherapy caused horrible side effects - which nearly took me out so we decided to stop the treatment after just six months."
Rhys continued: "Some of the side effects are really bad so you have to make a call to see if it's worth it. There was a moment when I was to be isolated from my family in the house which was really sad but we ended up isolating as a family as I didn't know if I was going to make it."
Sadly Rhys' marriage broke down during Covid while he was battling the incurable disease and the impact of cancer, which can cost patients around £6,500 a year had a detrimental effect on his livelihood.
Due to gruelling treatment, the digital designer had to slow down with work eventually stopping to take care of himself and spend the uncertain time he had with his daughters.
On top of fuel costs getting to and from the hospital, no income from work and divorce costs the dad had to rely on his savings and moved into a rental property which was expensive.
He said: "I ended up 40 years old with cancer, divorced and living in a rental property which I didn't expect to happen.
"It was difficult to work, I couldn't work full-time and I was getting a divorce which had a huge financial impact. Luckily I had savings to rely on and have now been back in full-time work for a while."
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Finally, he added: "I have managed to buy a new house, been back at work and the six months of immunotherapy I had has worked so far.
"It's more a case of living with cancer than beating it. I still get scans every six months and have a close relationship with my oncologist.
"Regular testing can be scary, it's emotional and brings back the same feelings from when I was first diagnosed but it's so important to follow through and find time with these things. Always get tested if you are concerned, you should prioritise that."
A new report by Zurich found that over half of those with Cancer have been forced to change their employment following the diagnosis. This comes as the cost-of-living crisis piles pressure on struggling households.
To raise awareness of the impact of a cancer diagnosis on everyday life, a ‘Hidden Cost of Cancer’ report has been launched alongside a photography exhibition by British photographer Martin Parr and First Dates, Merlin Griffiths.
It presents photography captured by people living with cancer or who are in remission, to spotlight the precious aspects of life that are given new significance. You can find out more here.
If you or someone you know has been affected by any of the issues raised in this article please get in touch at iona.young@reachplc.com
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