20 years ago my partner noticed an odd mole on my shoulder – the colour and shape was uneven. It turned out to be Melanoma, stage 1A. Luckily it was caught early, and after a wide excision I was assured that it was highly unlikely to bother me again. That didn’t stop me worrying, of course, and seeking more information. Back then it was libraries and bookshops. I gradually became a little more relaxed and after a few months things were back to normal (apart from the large scar, and 3 monthly checkups).
My life moved on in the normal way, with a good career, family, home. Until 16 years later, when I noticed a lump on the back of my neck. I was surprised when my GP referred me immediately to a Melanoma clinic, as I had no idea that Melanoma could come back so many years later. But Melanoma is very unpredictable and one of a small set of Cancers that can come back 10, 15 or even 20 years later. A fine needle biopsy confirmed the lump to be Melanoma. It was excised a few weeks later, along with some nearby lymph nodes. A CT scan showed no evidence of disease elsewhere, though an enlarged thyroid was checked using Ultrasound. Waiting for results of scans and tests is one of the hardest parts of living with Melanoma.
Again I researched Melanoma and treatments – this time with the aid of the Internet. Interferon is sometimes used as a treatment to help prevent recurrence, and I discussed this with my consultant, but he personally did not recommend it. As the side-effects are severe and the benefits marginal I did not pursue this. Life continued as normal (plus anxiety) for a year.
My kids started school, learned to swim, did all the normal stuff that makes a parent proud. Then one year later a scan showed up another suspicious node, so tests, waits, and surgery began again. I got used to phoning my consultant’s secretary to hurry things up/keep communication going. So again, back to “normal”, this time for nearly two years, before a scan showed up another lump in my neck. This time I had all the nodes in the right side of my neck removed (71!), a muscle and a nerve. The result was some weakness, limited range of movement in my shoulder, but that was not a major problem.
But six months later I found yet another lump, this time on my sternum. A different surgeon removed this (after more waits, referrals etc), and skilfully reconstructed the top third of the sternum. Rather surprisingly I have no problems resulting from this surgery, and even some of the aches and pains from the previous one have gone. Now I’m back to watching and waiting (and worrying). No evidence of disease (and so no treatment) so far. And I know some people do live with Melanoma for more than 20 years. I plan to be one of them.
To quote from her obituary, Alison "passed away peacefully in the Marie Curie Hospice on 1st June, after a long and courageous struggle with malignant melanoma. Alison was gentle, thoughtful, generous and good humoured, she will be sorely missed. "
You can see Alison's blog and poems here.