“It’s crucial to have a charity advocating specifically for this disease. I find lots of useful information and presentations on the Melanoma Focus website, which are helpful for those of us not medically trained.”
My grandmother died from melanoma back in 1971 when my mum was only 5 years old, so skin cancer has always been a concern in my family. I’ve always worn sun cream and tried to cover my moles however I have burnt my skin and stupidly used sunbeds a couple of times. I thought that the first sign of melanoma would be a bleeding or misshapen mole and have always made sure to check mine however I was diagnosed with no questionable moles and no known primary.
My melanoma journey started with a chronic cough which was passed off as possible asthma. I then developed a lump in my back and had lots of pains from my neck to my waist. These symptoms got worse over lockdown and the cough became debilitating. I was prescribed steroids, antibiotics and asthma pumps but there were no improvements only worsening symptoms until I couldn’t really walk without having a coughing fit and I would wake up daily with unexplained back.
It all came to a head in June 2020 when I became extremely breathless. I couldn’t walk without struggling to breathe so I rang 111 who told me to get to A&E within the hour. In A&E I got my asthma pumps out and showed the nurse. I thought I would just get a new asthma pump, but little did I know I was being triaged as high priority. I had an x-ray which showed I had a massive pleural effusion which needed to be drained. I had 2.5 litres of fluid drained from the pleural cavity in my lung and then I had a CT scan. I had to spend the night in hospital and after googling ‘pleural effusion’ I became nervous about the C word as that is one of the main contributors to this condition. Sadly because of Covid I was alone in hospital and the next day I was seen by a consultant who explained that after reviewing my CT scan it appeared I had metastatic cancer.
“My world came crumbling down as I was only 32 at the time.”
My world came crumbling down as I was only 32 at the time. I’ll never forget receiving that news in a small hospital room with only a nurse I didn’t know as support. A few days later I had a biopsy of one of the tumours and two weeks after that it was confirmed as metastatic melanoma with tumours in my spine, glands, lungs and who knows where else (I actually can’t remember there were that many). My family, partner and friends were equally devastated especially as it felt like history repeating itself after my grandmother’s melanoma.
However, thanks to scientists we no longer have the limited treatments they had for melanoma back in the 70s – we have immunotherapy! I commenced treatment and managed all four double doses of ipilimumab and nivolumab. I suffered with severe sickness and colitis and spent a couple of months in hospital because I was so unwell from it all. I also lost 2.5 stone which I’ve now put back on and then some.
During this time, I was also fitted with a semi-permanent drain because the malignant fluid kept rebuilding as a pleural effusion. I kept this drain in for around three months and at its worst point we (my boyfriend) was draining 600ml of fluid a day. Once on immunotherapy and to our joy, this fluid gradually reduced until nothing would come out. The lump in my back also disappeared and I started to feel better.
“The surgery was extensive, so recovery took quite a while.”
My initial scans were good showing a reduction in tumours but over the next few PET scans it showed that there were two sites of disease in my peritoneal which didn’t seem to be responding to immunotherapy. Thankfully these sites were resectable so in June 2021 I underwent major surgery to remove the tumours. The procedures were a laparotomy and thoracotomy, and I received the good news post-surgery that there were clear margins and immune cells present. The surgery was extensive, so recovery took quite a while. I still to this day can’t do a sit up and I have three large scars on my abdomen, but they don’t bother me because I’m still here enjoying my life.
Since surgery I have had three PET scans and the last two showed no evidence of disease. My oncologists have even uttered the words ‘remission’ and ‘complete metabolic response’ so I couldn’t be happier. I’m currently not on active treatment as colitis decided to rear its head again. As my latest scans were clear, I’m content to not have to have monthly infusions and get back to having a normal life again.
“I feel like my old pre-cancer self again.”
When I say normal, it’s as normal as can be considering I now have lots of appointments with other medical departments to help me live comfortably with the side effects from immunotherapy. To date, I live with colitis, low cortisol, low iron, atrial fibrillation, asthma and blepharitis but these are all managed well and I feel like my old pre-cancer self again.
I took 13 months off work, but I am excited to be back in the workplace now in a new role at a new company. I’m making plans for the future which at some points in my melanoma journey didn’t feel like they would ever happen.
“Cancer has taught me to live in the moment more….Try not to fret the small stuff”
I’m fully aware its early days with my clear scans but cancer has taught me to live in the moment more. Try not to fret the small stuff because it really doesn’t matter in the great scheme of things. I am currently living in a cancer free state, and I hope I’ll remain that way forever, so I can only feel gracious I’m here and enjoy my life and all the wonderful people in it.
What advice would you give to other melanoma patients?
Trust the process, I think you can get caught up with wanting to know and do everything at once but trust that there is a treatment plan for you, and you should take each day as it comes.
Take a notebook with you to all your appointments – call it your melanoma diary if you like but there is so much information to take in, you’ll want to write it down to refer to. If you can bring someone to your appointments, then definitely do because they can help absorb the information too.
A lot of patients worry about treatment side effects and of course they aren’t pleasant but please be assured they are manageable. It’s important to keep on top of any bodily changes and call your clinical nurse specialist (CNS) if you aren’t feeling well. Also no one can predict what side effects you’ll get so try not to compare yourself to others as you just never know.
“If you’re feeling low its worth speaking to someone…Don’t suffer alone.”
If you’re feeling low its worth speaking to someone whether that’s The Melanoma Helpline, Macmillan, Maggies, Trekstock or a referral to an NHS psychologist. Don’t suffer alone.