Anything that could go wrong did go wrong and then some. By the middle of 2011 I was very depressed. No matter how much I tried to avoid them, suicidal thoughts dogged me daily, constantly to be honest. I tried to talk myself out of it, told myself I'd survived operations and chemo and that it would be stupid to give up now. The best reasons I had to keep going were my daughters. I so want them to have good memories of their dad, not ones of man so miserable and sorry for himself that he couldn't put them first. I bumped along that rock bottom for more than six months and then I was thrown a lifeline of hope.
A relative in Canada tipped me off to a new drug that was having some success. In the Oncology outpatient waiting room, Peter, another melanoma patient told me of an article Professor John Crown had written about the drug. I googled it that evening and researched the drug. Ipilimumab is the 'Poster Boy' drug for a new generation of treatments. It was medically approved for use but the National Centre for Pharmacoeconomics, (HSE drug cost assessor) decided that it was too costly. Professor Crown argued very convincingly that the refusal of Ipilimumab was denying dying patients a lifeline of hope. Despite Professor Crowns protestations, there was no chance of a change of heart from the HSE. Hope, at fifty thousand a treatment, was too costly for a government too busy throwing money at unsecured bondholders to care.
I rang Joe Duffy on Liveline and voiced my frustration. A ball began to roll and very quickly there was a u-turn on Ipilimumab. I owe a debt of gratitude to Cathy and Peter, two very brave people who kicked the ball so hard it could not be ignored. Peter and Cathy both died within months of telling their stories to Joe.
Ipilimumab doesn't work for everybody. It is a treatment of last resort. You must be in the valley of death before you get it. For some it has no effect, for some a few extra months of life, but for a small few, it is a miracle. One caller to Joe Duffy described how her cancer 'Melted away like chocolate'. It is this lifeline of hope that keeps me trying. I occasionally let my mind wander and imagine waking up the morning after a 'Melted away' verdict from an oncologist. I imagine the dreadful, dragging weight lifted, I imagine lying in bed that fateful morning feeling fully alive and living instead of just existing.
To have hope back in my life has motivated me to pick up the pieces and keep moving forward. I began to write again and I recently completed my second book. For the first time I discovered blogging and my weekly blog keeps me occupied and content(ish).
For over a year, the last course of chemo has kept the cancer at bay. Just before Christmas I learned that something else had shown up on the latest scan. It is too small to be certain, it might be nothing, but my mind and body tell me otherwise. The valley is waiting for me and I must put up the fight of my life and for my life. Knowing that ipilimumab is available gives me hope. I could be the lucky one, I may live to tell the tale. In 2014 I will hope like never before. Hope is everything.
Many sufferers of illness are currently denied treatments because of the cost factor and the list is growing here and abroad. A cure for cancer or diabetes or any other illness is not a cure if only a very wealthy few can afford it. We have reached a stage where drugs are researched and developed at great cost, with results that could only have been dreamed about a decade ago, and yet they are of no benefit, except to a global elite. Hope has become a commodity with an ever increasing price tag. Hope is too wonderful a gift to monopolise.