Categories FundraisingHealth & Social CareReal VoicesRecent

Real Voices: “Catching melanoma early can save your life”

Willie Munro was diagnosed with melanoma after finding an odd-looking mole on his side. In this week’s Real Voices Willie describes his treatment process, and explains his keenness to educate people on spotting the signs of skin cancer. 

I’ve always had a number of moles on my body. I’m fair skinned with light hair, and I’ve never been much of a sunbather really. One day I noticed a mole on my side that looked a bit odd. It was difficult to see, so I decided to just ignore it. About six months later I noticed it again, and still thought it didn’t look right. However, I didn’t take it seriously for a few reasons. I felt completely fine, the mole wasn’t painful, and I just didn’t think skin cancer was going to happen to me. I was also busy at work, so it took a good few weeks before I actually went to the doctor. I was referred to dermatology, and they said it needed to come out immediately. I was also very worried about somebody taking a scalpel to me, and having to have stitches, which is such an absurd thing to look back on now.

I got it taken out, and the results duly came back as melanoma. To be quite honest, at that point I was just seeing it as a bit of an adventure. I hadn’t taken a sick day in twenty years, and I’d never been in hospital. This was all a new experience for me, so I wasn’t particularly fazed. Then my lymph node biopsy came back as positive, which was a real eye-opening moment. Suddenly it wasn’t an adventure anymore. I remember thinking that I’d gone from having a funny-looking mole on my body that I could see, to having this invisible cancer spreading through my body, which could already be in more areas that we didn’t know about. I then got what’s known as an “auxiliary dissection” which I don’t believe is routinely done anymore for Stage 3b. This was in 2015, and it was pretty major surgery. I was in hospital for a fortnight, and was told all about the risk of lymphedema (a condition when swelling occurs due to build-up of lymph fluid in the body) which was scary.  I took time off work to recover, which gave me time to reflect on what had happened. I went on to the three-monthly checks, and slowly started to move on. I found myself feeling quite anxious in the sun, which came as a surprise. I’m quite outdoorsy, and I really enjoy climbing and skiing, and there’s no shade in the mountains so it was a challenge. 

Four years later, I felt a pain in my side, which I initially wrote off as a climbing injury. However, it didn’t go away and the pain got worse and worse. I found that it eventually was keeping me awake at night. I had it checked, and it turned out to be melanoma again. I had further surgery, and by this time immunotherapy had been approved, which I was offered. I jumped at the chance. I did have a few doubts due to the side effects of immunotherapy, but I knew that if I didn’t take it and then developed melanoma in a vital organ, that I would kick myself.  I embarked on the treatment, and my second round of immunotherapy was the day that the first lockdown began. So I had to go into hospital every four weeks during a time when I was deemed to be extremely vulnerable. I had a bad reaction to the second dose that I had, and they had to stop and give me further drugs. I had itchy skin and painful joints, and fatigue. Then after the fourth dose, my cortisol levels plummeted and I had to be admitted to hospital in an emergency. I was there for four days and was stabilised again. That was a real low point, as the endocrinologist came to see me and bluntly said that I would no longer be able to produce cortisol naturally, which is essential to life. They told me I would need to take tablets three times a day for the rest of my life, and if I didn’t take them that I could become seriously ill and potentially die. That was a real shock. I began to imagine that I would not be able to do the things that I like doing, staying active and so on. Luckily I’ve learnt to manage the adrenal insufficiency quite well, and I manage to do most of the things that I want to do. 

Towards the end of my immunotherapy treatment my heart rhythm went to pot, and again I was in an ambulance and off to hospital. I’m unsure if that had much to do with the immunotherapy, but at that point we decided to stop it. I’ve been okay since thankfully, I still have regular scans and appointments, so still have to take multiple trips to the hospital per year. 

Although I would say that life is reasonably back to normal now, melanoma is constantly on my mind. When everybody else is excited at a sunny weather forecast, it fills me with dread. I was just away on a trip around France and Switzerland, and everyone was wearing shorts and t-shirts, and meanwhile I’m completely covered up and smothered in factor 50. It’s had a huge effect on my life and my family’s lives. I do consider myself lucky though. I’ve met and got to know a number of fellow melanoma patients since I was diagnosed, and four of those are no longer with us. It’s a reminder that this disease is very real and very serious. You get people brushing off skin cancer as “nothing to worry about” and I just don’t think they realise how serious it is. 

I became a member of the Facebook group Melanoma Mates when I was first diagnosed, but I quickly left because I found it too scary. When I was diagnosed with the recurrence, I rejoined. I’ve had some good support from people on there, and I find that I’m now able to support others and answer questions based on my experience. For example I was involved in a car crash, and the shock of that could have been really damaging and dangerous as my adrenal gland doesn’t work. Luckily I was able to take extra medication and I was fine. I shared that experience with the group, which they found reassuring as this can be a real worry for those with the same condition as me. I’ve made some friends that I would not have encountered otherwise. 

I’ve gotten into fundraising for several skin cancer charities over the past few years. Currently I’m undertaking a challenge to raise funds jointly for Melanoma Focus and Skcin by walking 100 miles across the month of May. It’s not too difficult for me to walk 100 miles in a month as I walk a lot, so to make it more difficult I’m aiming to walk those 100 miles in routes I’ve never walked before. 

I want to encourage people to check their skin. Taking precautions is sensible, but it’s possible to get caught out even if you’re careful. Especially if you’re up in the mountains as I am frequently, it’s easy to forget that even when it’s windy and cold you still need sun protection. I find the most important thing is to get to know the signs of melanoma and other skin cancers. Don’t do as I did, and brush off any strange-looking moles because you feel fine and you’re worried about the result. All the scans and treatment I’ve had adds up to a huge amount of money for the NHS, which makes me feel guilty. I feel that if I’d been a bit more proactive and been checked earlier, it would have saved so much money. It’s absolutely crucial to get moles looked at by the GP as soon as you spot them. Catching melanoma early can save your life.

Willie is fundraising for Melanoma Focus and Skcin, donate here to support him.

Check out our interview with a melanoma nurse to learn more about how to spot the signs of melanoma.