I’m not someone you’d ever have expected to develop skin cancer. In fact, I hate summer and have never sunbathed or been on a sunbed. But, like many British people, I didn’t wear SPF when I was pottering about in my garden, or out and about on an English summer’s day. I’m milky pale and freckly and I used to like to turn brown.
Now, because of my malignant melanoma, I’m living on borrowed time. Although I’m currently stable, my drugs could stop working at any time.
This isn’t really proper living. The treatments and steroids for my malignant melanoma have wiped out my adrenal glands, so I have to carry hydrocortisone with me, and I can’t walk far. I have cataracts and arthritis, and need regular heart scans. I miss working as a legal secretary so much, miss having an independent life, having energy. I suffer from what the melanoma community calls “scanxiety” – a permanent state of worry, waiting for my results. I feel I’m not really me any more, and I’ll never be me again. All because of the sun.
I chose not to have children of my own, but I’m really close to my nieces. I’m painfully aware that I almost certainly won’t live to see them grow up. That’s very hard to cope with.
This all started in March 2012, when I noticed a dark, ugly mole on my back, near my bra strap. I kept thinking I must get it checked out but put it off. Eventually it went crusty around the edges and sheer vanity made me go to see my GP. I didn’t think it was anything sinister; I just assumed it was cosmetic and could be cut off.
The doctor didn’t like the look of it, and referred me to a dermatologist, who took a biopsy the next day. I was still feeling rather blasé when I got a call asking me to come straight to hospital for a second biopsy, two days later, leading to a procedure to remove the mole and surrounding tissue and a biopsy of my lymph nodes to see if it had spread.
There, I learned I had stage 3 melanoma, a type of skin cancer. Fortunately, it hadn’t spread. I felt relieved and didn’t think there was anything more to worry about.
For the next eight years, life went back to normal. I returned to work, and my six-monthly skin checks became yearly. After five years, I was told I was cancer free and was discharged. I thought I had put the episode behind me. Then, in March 2020, just as we went into lockdown, I noticed a hard lump in my breast. Concerned, my GP sent me to my local hospital for a biopsy. I didn’t associate the lump with the mole on my back and only worried I’d need a mastectomy, which scared and upset me, although I didn’t expect it to be life-threatening.
The lockdown meant I got my results over the phone: I didn’t have breast cancer, the lump was a melanoma. It had returned and was now stage 4. I was devastated and had no idea melanoma could come back after years of being dormant. I knew there was nothing after stage 4. I was referred to St Bartholomew’s melanoma team and there the consultant told me the melanoma was not only in my breast, but also in my chest, lungs, liver, stomach and hip muscle. She said: “It’s in too many places to operate and we can’t save you, but we have new treatments that can keep you alive for up to five years.”
I was shell-shocked. I’d had no pain or obvious symptoms, just relentless heartburn and indigestion, which I’d put down to rushing my lunch at my desk. Now, at the age of just 49, I was being told I was going to die. It felt surreal.
The plan was to give me four cycles of the dual immunotherapy treatment, ipilimumab and nivolumab, by infusion. Immunotherapy is a recently-developed cancer treatment that enhances your immune system’s ability to destroy melanoma cells and prevent their spread.
When I read the consent form, it said I was having palliative care. Those words hit me hard. The first cycle was fine, but in subsequent cycles I had terrible headaches and digestive symptoms. I was so weak, I couldn’t even get into the bath on my own. I cried at the humiliation. I felt so, so angry. Although I don’t believe in God, I kept asking, “Why me? What have I done to deserve this?”
On my 50th birthday, in August 2020, I sat under the gazebo in my back garden, opening my presents and crying. There were flowers and chocolates, parcels of toiletries, even a huge Fortnum & Mason hamper containing the best steak on ice. But while I was grateful for the kindness of my family and friends, their generosity felt bitter-sweet. I knew they all thought it might be the last birthday I’d ever celebrate. These weren’t just birthday presents, they were farewell presents.
In February 2021, I was told the immunotherapy hadn’t worked and I had to switch to two different drugs. I was told that, without them, I would only live a maximum of nine months. I couldn’t stop crying at the news. My consultant, Dr Crusz, walked past the open door and saw me in tears. She came in, got down on her knees and held my hand. It was such an act of kindness – the whole team has been amazing. She told me the drugs were good, they should work and give me a lot more time.
Then, two months later, I had a scan. The doctor told me every single tumour had started shrinking. It was incredible news. If I had been physically capable of skipping, I would have skipped out of that room. A subsequent scan showed all my tumours had now vanished, bar the one in my hip. The doctors told me it was all they could have hoped for. But they were also honest. They said I wasn’t cured; the melanoma could and most likely would return. When that might be, nobody knew. Perhaps by then there would be a new treatment to try.
Since then, I have been healthy. My melanoma is still classed as terminal, but I am responding well to treatment and have scans every three months. I am absolutely terrified of dying, although I can now at least talk about it without bursting into tears.
Because this I know. When melanoma does return, it spreads very quickly, and it usually spreads to the brain. That’s what has killed many of my friends in my amazing Melanoma Mates support group, and what I most fear. But, so far, my brain MRI has been clear.
So many people don’t take skin cancer seriously. They don’t realise it’s a serious cancer like any other, and can kill you. I see adverts for sunbeds on Facebook, watch people burning in the park, and it makes me furious. I support Melanoma UK’s campaign for a ban on sunbeds and I want people to understand they need to use sun cream, even if just sitting outside in the UK. As I have discovered to my cost – and want everyone else to know – the British sun is just as dangerous as the sun on holiday.”