Guest Post – a friend who is making a difference

I have been doing a course. Macmillan Cancer Support, in partnership with Stanford University School of Medicine in the United States, are conducting a study testing a new online course for people who have survived cancer. I've been doing that. [the course, and the surviving cancer thing]

This is written by a person from that course. A man who is really making a difference. Steve. Please read the following – it's to do with skin cancer. Something I am totally unfamiliar with, but  should know about, having spent the majority of my life in hot and sunny climes…baking my bod in the rays! Thanks Steve, for your input in this post. All cancers suck – and we are better for knowing the symptoms BEFORE they get too carried away with themselves…bastard things cancers…here's Steve:

"Cancer always happens to someone else. I had been retired for just
over two years when suddenly it wasn't someone else, it was ME. We were on holiday in Ireland at the time and my wife noticed that a mole on my back was started to change shape. Once my attention was drawn to it, I noticed that it felt funny. When we got back home I went to see my GP and he referred me to a Dermatologist at my local hospital.

I had an appointment within hours and went in a few days later. He had a quick look, checked the rest of my body and before I knew what was happening I was lying on my stomach with unseen hands removing bits of me.

Three weeks later, back at the Dermatologist, sitting instead of lying down, I was told I had Malignant Melanoma, the most deadly sort of skin cancer. It's a shock, but I was introduced there and then to Gwen, a Cancer Nurse Specialist, who told me how things would happen from then onwards and answered the questions I could think of at the time. Ten days later I was back in hospital to have a wide local excision. This involves going back to the site where the first bit had been removed, (healing nicely now thank you), and taking a wider bit out to make sure that all traces of the cancer have been removed together with a wide section of perfectly good back. Ouch. So far so good. I went off to lick my wounds, (that's an expression, I can't even see that part of my back, never mind lick it).

Two months later I received the good-news letter telling me that the section removed had a good clear margin so it was likely that all the cancer had been removed. This was just about the time I first felt a lump under my armpit. Going back to Gwen, one of the first things she showed me was how to check my moles and how to see if there were any changes in my Lymph glands "which apparently act as magnets for any nomadic cancer cells". (The medics call it metastasising but I think of it as nomadic wandering.) Lumps are bad, especially in the armpits, because that's where lymph glands hang out. It was back to the hospital, fast track thanks to Gwen, and on the table again.

This time to have an maxillary block dissection. Now I don't know how many people get through life without knowing that they have Lymph glands, but I was one of them. And now, someone wanted to take them out. I knew so little that I thought it was like my other trip to the hospital, use the long stay parking but don't bother taking a book. Ten days later they discharged me, after first removing the drainage pipe sewn into my chest and the attached bottle that had been my constant companion. Unfortunately the fluids which had learnt to go into the bottle and then into some hospital disposal system now roamed freely around my chest. On one day I was a 44 inch A cup, the next a C cup and after three days triple D, or whatever comes next. So, twice a week I was back in hospital to have needles inserted and up to a litre of me extracted. Eventually it all got better, I was referred to a Physiotherapist and to the Lymphoedema Clinic and now I'm back to the same sorry state I was in before all this happened.

A year down the line and lots of thoughts become much clearer. Firstly, you have to take responsibility for your own illness, the
medics can help but its your problem, you deal with it.

Ask questions, ask questions, ask questions.

And make sure you get answers. If you don't like the answers ask someone else. Learn about your body and your cancer. My treatment by the hospital and everyone concerned has been superb. Everything has been done quickly and the people have been wonderful. BUT, (there's always a but), none of them have had cancer, they know what they know from books and experience of watching patients. They don't know how I felt, and I felt differently to the patient before me and the one who came afterwards. I wished that I had been able to talk to other patients who knew what I was feeling.

But there was no-one, no support group for skin cancer. Not in my local area, not in my county, not, as far as I can tell, in the UK. So I thought, what the hell, lets start one. Gwen is brilliant and supportive, the surgeons are with us, the hospital communications department are backing us, local newspapers have given us column/inches, local radio has given us air time. So the end of this phase of my cancer ends.

I am well, have new friends and I have a mission “to make things
better for patients who come afterwards". And I'll tell you, NOTHING
will stop us. So there Mr Cancer. You lost, I won."

Please contact Steve here: 01782 658889 or attend the meeting at the Hope Centre, Garth Street, Hanley, on Monday at 6.30pm.