Caroline, mucosal melanoma
When were you diagnosed and what with?
I was diagnosed with Stage II mucosal melanoma in May 2017.
How did you find out you had cancer?
It took a while! I discovered a suspicious-looking lump in late December 2016, and when it didn’t disappear I thought I should get it checked out. Mucosal melanoma is rare and tricky to diagnose, but I finally got my diagnosis after a surgical biopsy (an operation to remove the lump).
What did you think and feel when you were diagnosed?
I was alone at the appointment in which I received my diagnosis. I’d walked up to the hospital in unseasonable cold and rain, which I had already taken as a bad sign. I wasn’t surprised to learn that I had cancer, as I had been pretty convinced about it for months, but I had done some research and I was sure that I would have a different, more common type of skin cancer. That said, I’d always believed that melanoma would get me one day (and I’m militant about protecting my fair skin in the sun). I’d never heard of mucosal melanoma, though.
How did the people around you react?
Reactions were definitely mixed! I quickly found out who my real friends were. Nobody cried (to my face, at least) when I told them the news – but a few people didn’t take me seriously. I heard the question ‘oh, just skin cancer?’ a lot. Many ‘friends’ also disappeared, which really upset me at the time. However, the majority were absolutely brilliant. Since my first results appointment, I have never had to go to hospital by myself – and after treatments, my boyfriend and friends organised a care rota so that I would never be alone. Recently I had an appointment at a new hospital in another
city, and a good friend from university took the day off work so that she could hang out with me in Oncology. That’s love!
What treatment did you have?
I have had surgery: five operations in total, and possibly more to come. I used to say ‘I’ve only had surgery’ (mainly because I felt like a cancer fraud for not having had chemotherapy or radiotherapy), but I’m training myself out of this. I had five operations within eight months, which is more surgery than many people have in their entire lives.
How did you feel through treatment?
My treatment has been a rollercoaster ride. Each operation I had was supposed to be curative, but more melanoma was found every time. The cycle of ‘cut-heal-cut’ seemed endless, and it happened so quickly that I really wasn’t able to contemplate its magnitude. I tried to maintain as much ‘normality’ as I could between operations, working and going out with friends, because I didn’t know what else I could do. I have always led quite an active life, but I got the sense from many people that my cancer diagnosis meant I should be ‘on the bench’. Well, nobody puts Baby in the corner… Despite surgery, I managed to start learning a new language, and I even completed a fundraiser where I walked on hot coals! My plans to travel abroad were put on hold, so my boyfriend and I tried to make the most of the UK by going on as many weekends away as we could.
What happened after treatment finished?
Although I don’t have any surgery planned in the near future, my treatment isn’t really ‘finished’. As my cancer is rare and my case has been unpredictable, it’s likely that my health will be monitored quite closely for the rest of my life. This might sound daunting, but for me it’s actually very reassuring. As one of my surgeons said: ‘It’s our job to worry so that you don’t have to.’ I have accepted that cancer will always be part of my life now – but it’s definitely not my entire life.
How did you get involved with Shine?
I knew that I wouldn’t be able to navigate cancer without a team and a support network, so I started looking for help as soon as I was diagnosed.