Photo: kathrynstransplants.com
Photo: kathrynstransplants.com
Photo: kathrynstransplants.com

HEALTH NEWS

Why I've finally decided to speak out about my cancer

Journalist Caroline Crampton has never written about her cancer before. Until now. A new decision from NHS England has compelled her to speak out

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By Caroline Crampton on

I write a lot, in public for work, and in private to clarify my own thoughts. But there are two kinds of writing I’ve never done: I’ve never written a letter to my MP about an issue I care about, and I’ve never written in public about the fact that I’ve had cancer.

The latter is easy to explain: I was 17 when I was diagnosed, so I had no professional imperative to document what was happening to me. Moreover, the way of being ill that worked for me was to consider cancer an inconvenient footnote to the rest of my life, and carry on as I would have otherwise as far as possible. Since getting the all clear, I’ve been determined not to become a “cancer writer” (not least because the likes of Jenny Diski and John Diamond have done it so much better than I could) and instead have tried to build my journalism career on my interests, not an illness I’d recovered from and left behind.

The former is a bit more surprising, I suppose, since I work at a political magazine and am fairly politically engaged at a time when my side is not the side of politics in power. I’ve been to protests for things I care about, and I’ve written pieces highlighting injustices, but I’ve never had strong feelings about an issue where I felt that writing to my MP would make more difference than taking part in another form of campaigning. 

Until now. NHS England has published a cost-benefit review that includes the disclosure that it would no longer routinely fund second stem cell transplants for cancer patients. It is “not currently affordable” to offer them, apparently, even when it’s the treatment doctors consider most likely to be successful. When I first read about it, all I could think was if I get sick again, that would be me.

I had a stem cell transplant as the culmination of nearly two years of cancer treatment that included several rounds of chemotherapy and radiotherapy. Everything else that might have cured me was tried, because stem cell transplants are expensive and risky (mine involved nearly three weeks in an isolation room afterwards, while I waited for the new cells to take hold and give me enough immune system to encounter the world and all its germs again). Doctors don’t suggest such transplants lightly – they do it because they’ve tried everything else and it hasn’t worked.

The writer John Underwood, who became a bit of a social-media phenomenon, thanks to his own unusual diagnosis last year (he’s now raised over £100,000 for the Anthony Nolan Trust), has done a good job of articulating what this means for those of us this might affect:

“As far as I’m concerned, what’s at stake here is vastly more important than the trivial number of second transplants that actually occur. There aren’t many upsides to receiving a cancer diagnosis (unless, like me, you’re hugely relieved to finally have something to write about), but the one thing that might offer a crumb of comfort is the knowledge that your consultant, their team, all the nurses and orderlies and researchers that suddenly fan out around you like electrons around the nucleus of an atom, will all be working to save your life. That if you die – and you very well may die – it will not be for want of effort, for want of commitment. That all that can be done will be done.”

This is the crux of it: when you are so very ill, what helps you and your family process the horror of it is this knowledge that all options are being tried

This is the crux of it: when you are so very ill, what helps you and your family process the horror of it is this knowledge that all options are being tried. That if the worst happens, there was no way it could have been prevented by a bit more research into what diet to follow, or by access to a new drug only available in a different part of the country.

To me, this change that NHS England has made seems small and specific enough in the grand scheme of the vast health-service budget that letters and questions from MPs might be able to reverse it. So, here I am, writing about having cancer and writing a letter to my MP, in the hope that people like me can get our second chances back.

If you would like to get involved, the Anthony Nolan Trust has written an open letter about this, and has a handy form on its website through which you can write to your MP to ask them to try and change this decision. Or, if you prefer, you can use theyworkforyou.com to find out your MP’s contact details and contact them directly.

Here is the email that I’ve sent to my own MP. If you can, please send your own.

I wanted to write to you – something I’ve never done before – because I feel very strongly that a decision the government has made needs to be opposed. NHS England has just announced that it will no longer routinely fund second stem cell transplants for blood cancer patients who have relapsed (you could get this treatment before 2013, but it’s now considered not cost effective).

You see, I have a personal interest in this. I was diagnosed with Hodgkin's Lymphoma when I was 17, and underwent several rounds of chemotherapy, radiotherapy and eventually a stem cell transplant before I was given the all clear at 20. I’ve had eight years cancer free, but like everyone who has had any type of cancer will tell you, I have constant low-level anxiety that it will come back. Am I tired because I’m getting a cold, or is it back? Is that bump in my neck a perfectly normal gland, or is it A Lump? There’s never a day when I don’t have thoughts like these.

But the anxiety never gets much worse than just background static, because I know that the NHS will be there, if the worst happens, to give me the best possible chance, just like last time. Except now it feels like that’s no longer the case – because I’ve had a stem cell transplant before, I could be denied a second one even if my doctors were to agree that it was the best chance of a complete cure.

There are thousands of people like me, living with this permanent possibility, who have had one of our options cut off because of a bureaucratic funding decision. Please do everything you can to get Jeremy Hunt and NHS England to reconsider – write letters, ask questions, all the things MPs do best.

I look forward to hearing from you.

@c_crampton

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