Living Without HepC

After Mynurse’s clinic, I went to visit The Hepatitis C Trust in the afternoon. Tucked away amongst the streets near London Bridge I found the Trust, with a shop front belying the size of the spacious office inside – a bit of a tardis, as Charles Gore put it. I found everyone very welcoming and friendly – and I had soon met Catherine, Jane, Radcliffe and Sam.

Like others of you who read this blog, I have called their Helpline and found Sam very helpful on my queries about blood tests – so it was good to meet her in person. If you haven’t used the helpline I would recommend it. The Hepatitis C Trust Helpline – 0870 200 1 200 – is open for calls from Monday to Friday from 12.00 to 6.00pm (12.00 – 7.00pm on Thursdays).

And there is another telephone line for support for partners, friends and family of people with HCV. This is run by Maren who is happy to take calls every Wednesday afternoon from 2pm-5pm. (However, if it is an emergency you are welcome to call outside of these hours – leave a message and she will call you back as soon as she can.) This Helpline telephone number is 0207 371 0081.

I have referred to that frisson of interest when I meet others who are HepC+, that sense of being with others who know what it means, the common ground. I suppose it highlights that we can feel isolated – although I know for me it means I can be somewhat less guarded about my brain-fog, specific dietary requirements, etc.

Well, I quickly found that same sense of camaraderie at the Trust, as so many people I met shared with me details of their status or treatment, etc. It made me feel more relaxed about forgetting where I had put some papers down in the office, forgetting my scarf when I left, all the things I often do. Whereas I usually try to smooth over these occurrences, hoping no one will notice or think “he’s really lost it”, I felt I could just mutter “brain-fog” and everyone knew what I meant.

While we were looking at their website, I found more pictures by Michelle Martinoli – she has photographed a number of the staff, again as part of her project on people with Hepatitis C. Click here to go to that page on their site – and read the background stories of some of the staff at the Trust.

We also talked about the Patients Association – of which Carol and I have been members since December 2004. Although the Association is a recent innovation, I was concerned to hear that membership has only reached the area of 187 people or so. It is free to join and represents our voice – so I would recommend you consider joining. Information can be found by clicking here to go to their web page.

One of the projects the trust is undertaking is a patient survey asking about people’s experiences of alternative medicine system, diet, therapy, exercise regime, treatment, unusual practice, in fact anything to combat this disease. Information can be found on their site (click here) The results so far are fascinating. They show that 95% of us have tried alternative therapies – the figures show the types and the outcomes.

It was good to find such a positive resource for Hepatitis C working with and for people with HepC to campaign and provide services.

Oh, and later on at home, I did injection #17 (only 31 to go!). Stomach area today. Several red blotches still hanging about on the side due for injection, so I had to poke around to find a clear site. First time I have had any glitches – not that this was a big one. On first injection I felt it really hurt – like I had pierced something so I withdrew the needle and had a second go nearby. No problem this time. I was really surprised – in previous weeks the needles have been easily inserted and no pain at all.

This entry was posted on Monday, February 28th, 2005 at 11:28 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.