“You think, okay, I get it, I'm prepared for the worst, but you hold out that small hope, see, and that's what fucks you up. That's what kills you.” (Stephen King)
Did you catch last night’s Panorama: Can You Stop my MS?
It followed some patients with MS who are undergoing a pioneering cancer treatment to try and treat their relapsing-remitting multiple sclerosis. It was one of those programmes where the very science involved was utterly terrifying and wonderful at the same time: they blast you with chemotherapy to encourage the release of stem cells from your bone marrow; they harvest the bone marrow to access cells that were formed at a time before MS manifested itself in your system; they blast you with chemotherapy again to destroy your immune system completely; they then put the stem cells back into you to “reboot” your system with a copy from before you had MS. Sounds ridiculous, but some of the results were astonishing: from wheelchair to walking and cycling and swimming again in less than a year. Not only does this seem to halt disease activity, but it seems to roll back disability too. The holy grail.
I found this a difficult programme to watch. One of the patients featured had been a marathon runner and triathlete who had gone from immaculate physical specimen to a wheelchair in the course of 8 brutal months. His positive attitude and his remarkable physical improvement were truly wonderful things to behold and had me on the edge of tears several times. The programme offered hope, but it also showed how cruel this disease is and how quickly and indiscriminately it takes hold. I know that I’m one of the “lucky” ones. I’ve got my problems, but I ran a marathon last year and I’m training to run another one this year… but it’s hard to think how quickly this could all change. Perhaps, thanks to a treatment like this, this could all change. Perhaps no one diagnosed with MS will have to go through this sort of thing again. This was a programme that made me realise all over again what a wonderful institution the NHS is. This treatment works out at around £30,000. That sounds like a lot, but that’s about the same as the annual cost of the drugs I use that are *maybe* slowing down my disease progression. According to the MS Trust, this treatment might have advanced faster if there was anything in it for the drug companies…. But of course, if they fix us, they can’t milk us ongoing, so they haven’t invested. Luckily for us, the NHS isn’t driven by a profit motivation, and they are pursuing this line of treatment.
Hopefully, this treatment will represent the future for people diagnosed with MS – for those with progressive forms of the disease as well as those of us with relapsing-remitting forms. Who knows? What we can say for sure is that, after years with no hope of a cure and an uncertain future, there’s some genuinely encouraging news of a treatment that might help us bring about the end of this damn disease. We have tangible cause for hope.
After hearing about the programme, my comrade-in-MS, Steve Domino, pointed me in the direction of this little beauty by Emily Dickinson:
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.
As Napoleon Bonaparte apparently said, “Courage is like love; it must have hope for nourishment”
I want choices and I want them now
13 hours ago