Newly registered

This will actually be the second time I’ve told my story here - I posted just over a month ago in your Campaigning thread but now that I’ve registered properly I thought I’d introduse myself in a new thread - hoping others will do the same. I’m 68,retired, and doing an Open University degree in English Language and Literature (supposedly for fun, but it’s interesting to see how much I want to do well even though I don’t ‘need’ to!),a wife, a mother and a grandmother. I live in the Scottish Borders.

My Hodgkin's lymphoma was diagnosed in January 1973, when I was 23, treated with radiotherapy the same year, and with chemo in 1973-74. At that time there was no expectation that people would survive very long, but it happened that my treatment was one of the earlier ones that had very good results, and here I still am 45 years later. I had a few late effects right from the start, notably an early menopause,  but they didn't generally impinge much on my ability to enjoy life, and my husband and I were lucky enough to be accepted as adoptive parents, but it wasn't until around 14 years ago that I started to experience increasing shortness of breath, muscle wasting, peripheral neuropathy and hypothyroidism. I've also had an aortic valve replacement since the valve was damaged by the radiation, and am on lifelong warfarin to prevent blood clots forming round the valve. There are others like me, but not many, and most of them are in America. Because the issues that affect people are so varied, they cannot be managed within one medical or surgical discipline, and because there is no treatment for something which is effectively a combination of accidental injuries, there is little incentive or funding for support and/or management programmes in an already underfunded health service, when so much research is funded by the pharmaceutical industry. In common with people with other chronic, untreatable, health issues, we are expected o self-manage by eating a healthy diet, taking plenty of exercise, and ... yes, by practising mindfulness. I do all these things, except for the exercise because the neuropathy has made me virtually unable to walk) and can vouch for the effectiveness of meditation practice over many years. That's all good, but a bit more recognition and inclusion in the support offered to people 'affected by cancer' would be welcome. Even though we were 'cured' at the time, we're still affected, but most cancer charities do not see us as part if their remit.

That’s why I’m so pleased to see that you are now collaborating with Headspace, and as someone who’s found meditation a valuable way of learning to see the many ups and downs of my life after cancer, I know that this is a very positive way that we can support ourselves, and each other, when times are hard. 

Looking forward to getting to know everyone!

Alison