Wednesday, 29 February 2012

A Rare Day in a Rare Month for a Rare Cancer

I went to have a blood test the other day and the nurse asked me about my wristbands and the significance of the tree symbol. I told her that my sister has a very rare cancer, called Cholangiocarcinoma, and that no one's ever heard of it. She said, "I'm in the medical profession and I've never heard of it."

I'd never heard of it either, until 31st August 2009. Even then, I didn't hear the name; I read it. my sister had been allowed home from hospital on a 24-hour pass. Sounds generous, but being a Bank Holiday, all specialist meetings at the hospital had been cancelled and there were no further tests they could carry out until the specialist teams from Kings and St Thomas' Hospitals had met to discuss her.

I read her day-release form and it said Cholangiocarcinoma in the "reason for admission" box. That was the first I'd heard of it. Until then we'd constantly been told "we don't know" when we asked what on earth was causing her to become jaundiced and to scratch her legs until the blood ran. I went and looked it up on Google. Big mistake!! Until I found the Cholangiocarcinoma Foundation in Salt Lake City, every site I looked at was terrifying, bleak and simply made me feel worse (I found AMMF quite a bit later).

Through CCF, I made some wonderful friends all over the world. The first UK-based friend who reached out to me was the gloriously vibrant and ever optimistic Val Mutton. I was also lucky enough to meet other marvellous people - including Helen Morement - through CCF and, through Helen, I discovered AMMF. I am now fundraising for AMMF and campaigning for greater awareness. I don't want anyone ever again to say they've never heard of it or to read out-of-date statistics or to feel so alone, as my family and I did when my sister was diagnosed ...

... But let me tell you about the lovely Val Mutton:

Val emailed me one day and told me she was coming to London for her 50th birthday, so we arranged to meet at Covent Garden and that's where I first encountered the bundle of energy who, until then, had simply been an online username to me (Valjee from Cornwall, UK)

We had a wonderful day and I was amazed and delighted to be invited to join her and her brother for her 50th birthday meal. I had such a marvellous time and Val became a very dear friend, by text, phone and email. She was constantly making plans to visit again but the snows prevented that and, by the time the weather stabilised, Val's health was deteriorating.

She had originally been told her cc had been found very early and that the surgery had completely removed it. No chemo was considered necessary; she was "cured". She had awful after-effects from the surgery and it appeared scar-tissue was starting to block the ducts (to me, aspects of the "cure" sounded worse than the disease). She went into Total Organ Failure in April last year and was resuscitated. She was then told she could either stay on an external drain for the rest of her life "which probably wouldn't be long" or have further surgery, which would give her a "relatively normal" life, but which she may not survive. Ever both optimistic and practical, she hoped for the best and planned for the worst. She had the surgery in November last year. She didn't survive it.

Her brother called me to give me the news and told me she had left a notepad on her bedside cabinet when she went into the operating theatre. They looked at it after she died and it contained "6 numbers to call if I don't come through the operation"; mine was one of them.

I couldn't go to her funeral but her mother sent me the Order of Service and thanked me for being such a good friend over the past 2 years. Dear Val - I thank YOU with all my heart. I would have totally lost all humour and perspective if it hadn't been for you. I miss you and your outrageous sense of humour so much.

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