Kelly’s Story

In March 2015, Kelly was diagnosed with stage 1a malignant melanoma, she went on to have a further four primaries, one of which was 1b. Kelly has since made it her mission to spread awareness and learn what she can do to help prevention. Here, Kelly very kindly shares her story:

 “The most important lesson I have learnt is not to put off anything, ever.”

 

In 2015, I noticed a changing mole on my lower abdomen and mentioned it to a GP (not my usual GP)  when visiting for something else. She wasn’t concerned but I got a letter from her some months later telling me that she had referred me to dermatology. I was unconcerned as I am covered in moles and didn’t consider it could be anything sinister, so went along and it was removed there and then and I was given an appointment for 2 weeks’ time to attend for the results. Again, I had no real concern as I thought my risk factors were low, no sunbed use, no history of burning and a regular suncream user, fit and active with a good diet and always mad busy so I just slotted this in and went alone.

Being told it was malignant melanoma was a massive shock. The dermatologist and skin cancer nurse were both there and I do not think I heard much of what they said but I remember being handed a blue folder and just looking at it in my lap, unable to speak. I then had a wide local excision and had to cancel a holiday to have surgery.

“My Grandmother died of melanoma when I was 17 so I was aware of the disease, but my knowledge was limited.”

 

I went on to have a further 4 primaries, one of which was when I was pregnant with my now 6-year-old daughter. I remember constantly having biopsies and forever asking to be mole mapped, which did not happen until I had had over 30 biopsies. I stopped counting at 36 but I think I have had more like 50 now. In 2016 after I had my third melanoma when pregnant with my daughter, I ramped up my mission to find out all I could. My Grandmother died of melanoma when I was 17 so I was aware of the disease, but my knowledge was limited. I did a bit of googling and read information from Macmillan, but I had a need to know more so in 2018 when my daughter was tiny, I went to my first MPNE conference in Brussels and soon after started attending the UK Melanoma Patient Conference and  this year I have attended my 4th conference.

 

Being pregnant with my daughter brought joy and worry in equal measure. Not only had I miscarried the year before, but I had a terrible fear that I’d pass this on to her. My plastic surgeon and dermatologist were both confident all would be well, and it was, until I developed a new mole near my original site. It was growing rapidly, and they decided to remove it when I was 6 months pregnant. The biopsy came back as malignant, and I then had a WLE on an already huge tummy. That was the worst of all incisions in terms of healing. It turned out to be 1A and there was no risk of passing through the placenta, but I cannot say this helped me relax throughout the remainder of my pregnancy.

 

There have been times when I have thought that somehow, I am to blame. If you look back on photos of me as a kid, I had a permanent tan. Although I never burnt and always had SPF on, it likely was not applied as often as we now know it should be and I have always spent a lot of time abroad, even as a child. I spent many years surfing, I’m always outside with the dogs and deliberately live where I do (in deepest darkest Northumberland) because I love the outdoors so much. But I soon realised that exposure to the main risk factors isn’t always why we can get cancer. And, having cancer is crap enough without feeling responsible for it happening.

“I have been impassioned to advocate where I can. I have worked hard over the last couple of years, to do what I can to raise awareness and do my bit to help prevent this disease in others.”

 

I have been impassioned to advocate where I can. I have worked hard over the last couple of years, to do what I can to raise awareness and do my bit to help prevent this disease in others. I have used my job as a physio to scrutinise my patients as I see parts of their bodies at times that they don’t see themselves. I am always bleating on about SPF. I go into local school with the SCKIN slip slap slop campaign, I speak to local sporting groups, and use my connections with the farming community to try and educate them in minimising their risks as much as possible.

 

Living as a multiple melanoma patient has, bizarrely, had its benefits. The most important lesson I have learnt is not to put off anything, ever. I have always flown by the seat of my pants and in honesty, when I was diagnosed, I thought that should I die, I would have had an amazing life full of fun and adventure. However, I was not yet a mother and my own mother has dementia. I was determined that I had to outlive her (we are both still alive at the time of writing!) and I wanted to do what I could to have a child. My outlook has always been irritatingly positive and that has not changed but I definitely have times when I am sad and get an overwhelming sense of how short and even fragile life is.

“I had thought that going in there with all my hair and looking fit and well would make me a fraud.”

 

One of the bravest things that I have done since my diagnosis is seek help. A friend told me about Maggie’s early on, but it wasn’t until my 4th diagnosis when I recognised that I was indeed a cancer patient, that melanoma is real cancer and that it had and does affect me tremendously. I had thought that going in there with all my hair and looking fit and well would make me a fraud. But inside I was screaming and trying to run away from myself and feeling all sorts of mixed-up emotions. So, in 2018 I attended every workshop they had running and embarked on 2 years of therapy with a psychiatrist. I cannot describe how beneficial that entire process was. I will not hesitate to go back in future should I need a top up. It was a place for me to cry without feeling like I was burdening my friends, a chance for me to really figure out just how putting a brave face on stuff was like putting a tiny plaster over a gaping wound. I needed times to be sad and feel fed up and angry and frustrated and Maggie’s gave me just that. I was in a safe place where I could be vulnerable and not have to be strong for those around me, I could go to pieces for an hour, knowing that I would be better equipped afterwards to live life again until I went back the next week or month.

 

What advice would you give to other melanoma patients? 

“You have a right to be seen as a cancer patient and for skin cancer not to be dismissed.”

 

 Learn all you can and be your own advocate. Now is not the time to be passive. If I hadn’t have shouted and screamed to be mole mapped, they would still be hacking way more moles out of me than we know they should. I’m like a patchwork quilt and as much as I do not mind, many of the biopsies could have been prevented had I been mole mapped. Your mind plays tricks on you when you have as many moles as I have and my dermatologist and plastic surgeon always wanted to err on the side of caution, which I get, but many moles that we thought were new or changing, probably weren’t.

Pass on your knowledge to everyone.  I have even done talks with our local Women’s Institute and Garden Society to drum into them how important it is to put on SPF daily and check skin regularly.

You have a right to be seen as a cancer patient and for skin cancer not to be dismissed. Your experience is still one of cancer, regardless of your treatment and the fact that you may not “look” like what many expect a cancer patient to look like.

Connect with others. But only if it serves you well. I have found Facebook groups like Melanoma Mates to be excellent at times and just what I need, but mostly I find it all a bit too overwhelming and my aversion to social media sees me avoiding groups more than engaging with them at times. And this is ok. Give yourself a break, you’re on a roller-coaster of a ride and sometimes it feels never ending so do what you need to do to cope as best you can. Be brave and if you feel you need help, then find it.

It’s hard but do not be afraid of being outdoors. You can do so safely. You have to think about quality of life and being outside is so good for our souls so making friends with the outdoors again is something I’d encourage. I am, however, obsessed with slathering on SPF, for me and my daughter every single day.

Kelly also blogs her personal experiences, read her blog here and more recently, vlogs on her Instagram profile @physiokel.

Kelly spoke at the 2024 Melanoma Patient Conference about scar management, her talk was extremely engaging and gained a lot of positive feedback. The video of Kelly’s talk will be shared soon.

“Give yourself a break, you’re on a roller-coaster of a ride and sometimes it feels never ending so do what you need to do to cope as best you can.”