A glimmer of hope postpones my suicide but for how long? ...
EACH WEEK, THE SUNDAY HERALD HAS CHARTED THE BATTLE BY COLIN CAMPBELL FOR THE RIGHT TO DIE. HE WAS DUE TO END HIS OWN LIFE LAST THURSDAY AT A SWISS SUICIDE CLINIC, BUT NOW HE HAS LEARNED THAT A NEW DRUG COULD HELP ALLEVIATE HIS CONDITION. IN THIS, HIS LAS
AS readers know from last week, I have temporarily postponed my journey to Switzerland for voluntary assisted suicide – scheduled to take place last Thursday, June 15, 2017 – after being contacted by former Metropolitan police sergeant Rona Tynan.
Rona, who also has multiple sclerosis, was of the opinion that I should not commit suicide until having tried every other possible avenue – including soon-to-be-available multiple sclerosis treatments for folk like me with primary progressive MS. Rona persuaded me, and I agreed.
For the first time since multiple sclerosis was identified during a post-mortem 149 years ago, there now seems to be a real hope of lasting riskfree treatment for multiple sclerosis sufferers within the next few years.
The timing could not have been more perfect – although there was a fear, of course, that the developments had just come too late for me. But I wanted to remain as optimistic as possible.
I have described myself as a man on death row awaiting his end – but now, there seemed to be a reprieve on the horizon. A glimmer of hope. So what exactly were these treatment options? There are three currently available, with two of them requiring stem cell transplantation, on which my hopes rested.
Stem cells make it possible to repair damage in the body as they are “source” cells that have not already been designed for a specific function.
Unfortunately, stem cell treatment or therapy is generally not available on the NHS. That means patients like me have no choice but to incur the substantial costs of travelling abroad for treatment.
The first option is stem cell treatment without chemotherapy. Therapy without chemo, however, raises the risk that a patient’s faulty immune system may reappear thus cancelling out any short-term benefits of stem cell transplantation. Stem cell therapy without chemo can be completed in about seven days.
The second option is HSCT (haematopoietic stem cell transplant) which does require chemotherapy to completely eradicate the faulty immune system.
After the chemo process has been completed, the process of stem cell transplantation begins. It is this treatment which is believed to be the most effective as it removes or fixes the faulty immune system.
Many neurologists, however, consider such treatment to be of high risk so do not recommend it. The therapy takes anywhere between two and four months, and is the one I would have been most likely to favour.
But the thing is, multiple sclerosis has a horrible “uniqueness” for each individual patient. My neurologist, Dr Javier Carod-Artal, wrote to me on May 10 to tell me this: “There is no proven or accepted evidence base for the safe and effective use of stem cell transplantation in your condition. And that for this reason this treatment is not offered in standard medical practice.”
So because Dr Carod-Artal does not believe this will work for me, and because HSCT treatment is very physically demanding, and immune system removal would leave me very weak, I have decided not to go overseas for treatment.
But a glimmer of hope remains. There is a third option, expected to be available in Scotland in late 2017. It features the new drug called Ocrelizumab, which is taken by infusion twice yearly and is believed to be effective in treating all forms of multiple sclerosis.
That means there is no requirement for expensive travel abroad and treatment accompanied by a carer. But late 2017 is a long time to wait for someone in my condition. Nevertheless I have decided that this is what I must do.
BUT will it be effective and lasting? My great fear is that if/when I need to take my life, I need to be healthy enough to do it myself – to administer the drugs that will kill me. I do not want to risk time passing to such an extent that suicide by my own hand is no longer possible.
At present, there is no certainty as to how long lasting any benefit of Ocrelizumab will be. So there is a chance that I may very soon have to contemplate suicide again.
It will, though, hopefully halt the disease progression and varyingly restore some mobility. Which would be amazing because for now I remain housebound in my first-floor flat due to the stairs. My MS specialist nurse says I need ground-floor accommodation, but that has not been forthcoming.
So in the final analysis, how much hope do I have today? I must be brutally honest: people suffering from conditions like mine need something more than hope, and that is the certainty that when hope runs out, we can end our own lives with dignity.
As I close my column, I believe my best option is to remain here in Scotland and hopefully be prescribed Ocrelizumab. But even aside from all this, voluntary assisted suicide must be legalised in the Scottish Parliament in 2018.
As I have said many times, that is my dying wish.
Thank you for reading my column these last few weeks, and for joining me on this part of my journey. Who knows, you may hear from me again, come the end of the year. Wish me well. To donate, please visit: www.mssociety.org.uk/