 | | In July 2002, an ex-partner (from over twenty years ago) called and told me that they had just been diagnosed. I was concerned for them but wasn’t too worried for myself as I was sure I had been tested as part of a general “well woman” health check over the years (I now realise this was most likely for hepatitis B). On top of that I felt really well though perhaps in hindsight I can see that I was more tired than some of my friends seemed to be, but then I worked hard and played hard so that was not surprising. |
Sam May - Head of Patient Support
I tend to be neurotic about my health generally so I thought it would be wise to go and have a test. My GP wasn’t too concerned either – liver function tests in the past that he had given me as part of general health checks over many years had all been normal and there was nothing else which suggested anything was wrong.
When I got the results a few weeks later, he was clearly as shocked as I was. I was very frightened as (surprisingly for me!) it was one of the few medical conditions I was not informed about. Neither was my GP and so I went home feeling desolate and spent ages in cyberspace trying to make sense of the conflicting information there. None of it was comforting or encouraging and the only thing I understood I could really do to help myself was to give up alcohol, which I did, albeit in fits and starts at first!
There was a long wait to be referred to a specialist at that time (6 months) and so I decided to have a private consultation with a liver specialist in the interim. Speaking to someone who knew what they were talking about was really helpful but most importantly I made links with a few people who had hep C, initially at the Norwich Hep C Support Group and later with the then, newly started Hepatitis C Trust.That filled in even more gaps and didn’t make me feel so isolated, though when I started talking about it to friends I was amazed at how many people knew someone who was affected.
When the NHS appointment finally came through I was keen to start treatment as soon as I could. With geno 3 I knew I would have a good chance and I had no qualms about going ahead. After having had it for anything up to 23 years at that point I was much more worried about how much damage had been caused so far and wanted to stop it getting worse, rather than being overly concerned about the side effects of treatment.
I started it in September 2003 and it was certainly difficult, not as bad as some of the things I read on the internet had led me to believe, but a major challenge that stretched my resources on many different levels. Strangely it was also a positive turning point and a profound learning curve.
I also made friends with a fellow patient in North London who had started an informal support group (C-Positive Action) and together we wanted to raise awareness as we were both incensed by the lack of information and support. We applied for a grant to buy some red and yellow HCV ribbon badges and came to The Trust to see if they would help us to distribute them.
That meeting led to me offering to volunteer here for a short while. That led to me handing in my notice at work and I came here to launch the helpline in June 2004, just a few months before being told that the treatment had worked.
It’s been truly amazing to see how the Trust has evolved and developed and what we have all achieved here in such a short space of time. I will always remember how I felt when I got diagnosed and will always be grateful for my ex-partner suggesting I get tested. I hope I am making a small contribution into helping others be aware of, come to terms with and get a grip on, their own hepatitis C.
