Living Without HepC

I’ve been re-reading a post I wrote, but never published, in June 2005. Whilst on treatment I kept having ideas about moving the issues of Hepatitis C further forward: increasing awareness and improving support for people with hepC (on or off treatment). I also realised my limitations on treatment prevented me from doing anything at the time so I shelved that post. But it’s interesting to look back and remember that my mind wasn’t totally fogged up despite the meds:

These are ideas which have taken my interest at this point and for which I can formulate some plan. There may well be others – and some of these may be non-starters.

Project One
Establish an online portal Hepatitis C Forum site, providing links to HepC blogs within the community, featuring recent updates from these blogs, access to discussion forums, chat room services, listings of news items on Hepatitis C, and providing links to Hepatitis C resources and other relevant sites.

Project Two
Establish a counselling service specialising in working with people who have Hepatitis C
Establish a network, with an online presence, of counsellor therapists offering face to face, telephone and internet counselling
Establish and deliver counselling services to Hepatology units or other organisations dealing with people living with hepatitis c.
Establish and deliver training modules, recognized by the BACP (British Association for Counselling & Psychotherapy) as Continuous Professional Development, in working with people with hepatitis C.

Project Three
Apply for funding and operate a pilot project for a dedicated online support service for patients preparing for and undergoing treatment at one Hepatology centre. This support would include an online counselling element, individual blogs and group forums. It would be accessible only to patients of that centre while they are attending the HepC clinic. This could then become a model of support usable within other Hepatology units in the NHS.

Project Four
Establish and deliver training services for medical professionals and or other groups where I can use my previous training experience and ‘expert patient’ perspective to help professionals develop their skills working with people who have hepatitis C.

Project Five
Establish a loose collective of professionals who live with hepatitis c who can together create or cultivate joint ventures contributing to the awareness or development of services for hepatitis c (eg –collaborative writing, film, etc). Other people on treatment have already suggested ideas to me and collaboration could be a realistic way of moving these ideas forward to fruition. There is additional power in working together.

Seven months later, I can see some of these ideas aren’t really ‘starters’ and some are huge projects. And some are projects I’m not sure I would want to be involved with just now.

However Project One, an online portal for Hepatitis C, was so compelling that I purchased a domain name at the time and have been holding it unused since then. When I established the Forum in May 2005 I could see there was a need for people living with HepC to connect with each other and not just use their internet connections to read the blogs and the latest HepC information and news (although there is a need for these too).

It did seem an odd anomaly though to operate a discussion board as an adjunct to my personal blog about treatment. I am delighted the Forum has taken off and become so popular, despite the somewhat obscure internet location. However, The Hepatitis C Forum deserves a site of its own. And a portal will not only provide an independent home for the Forum – it is an ideal place to gather together various HepC elements, making a one stop access point and a community focus for and by people living with HepC.

I’m very excited about the new site and really grateful for the professional expertise given by Ben. He had previously advised not saying too much about this project until it was actually underway, so I have been keeping quiet over the past few weeks while we have again been discussing it more actively. But I notice Ben has recently written about it in his blog (Catch up post, December 29th 2005), so at last I can also talk about it. I also notice Ben has listed some of his work projects on his blog so he can’t really complain if I qualify (or big-up in a fatherly way) his professional expertise by pointing out he has been the lead developer on several sites for BBC News & Sport and BBC World Service and is now the founder and Project Lead for BBC’s successful developer network, backstage.bbc.co.uk, a key part of BBC New Media’s innovation programme.

As for the new website, I don’t know about timescales yet but the project is taking shape and we are looking at formats, layouts, etc. It’s the same partnership as before – me doing the thinking and talking, Ben doing the thinking and programming. I will update on progress and developments as we go.

The new site will be home for the Forum, list recent HepC news and updates from the listed blogs, provide links to information and other resources. There is enormous potential to develop other services – chat rooms, more forums, buddying programme, and lots more that hasn’t been thought of yet. For me the important thing is establishing an online community presence for and by people who live with HepC.

Have had a really enjoyable Christmas. Both our sons were with us for a few days, as well as mother-in-law. Definitely an improvement on last Christmas – of which I can remember very little except the discomfort of Bell’s Palsy on top of the treatment. I felt particular pleasure in having those few days with our sons, bringing back memories of family Christmases when they were young.

Christmas Day was an agreeably chaotic day, in the usual Christmassy way. We made a short video greeting from of all us which we sent to relatives in Spain and Canada – and got similar in reply. (You too can check out our Metcalfe family Christmas greeting) Christmas dinner was skilfully planned and cooked by Carol – no mean feat considering the different likes and dislikes and dietary requirements of the five of us. Some friends came in later and a marathon game of Monopoly went on till the early hours. Surprising that mother in law was able to cope with the rowdy joking, occasional language and naughty conversational innuendo facilitated by the array of Christmas cocktails served up by Phil. Perhaps not wearing her hearing aid helped make it tolerable.

Two days of unrestrained Christmas nibbles such as chocolates, mixed nuts and Christmas pudding plus two exceptionally late nights did take their toll on me – I felt fatigued and bloated yesterday. Or I had a one day flu bug – but I suspect the former. I was going to say ‘it was worth it’ as I did enjoy it all, but more sensibly it serves as another opportunity to recognise that although I feel better there are still limitations to how much my system can cope with at this stage. Next time, the trick will be to remember while I’m having a good time – be sensible and don’t overdo it.

Ben and I spent some time planning developments for the Forum and he’s now working on the programming and technical stuff. More on that to follow…

I’ve had a break from blogging for the past month or so. It wasn’t that I decided to take a break – more a case of just not publishing what I was writing. I can imagine people thinking the lack of recent posts meant that, now I’ve completed the treatment and cleared the virus, I am getting on with the rest of my life and far too busy with exciting things to be writing this blog or bothering with HepC. Well, that’s not the case, far from it.

In the last entry I wrote about having nagging thoughts about what I ought to be doing because I‘m not really ill any more. Soon after I found it too much to take on the sorts of things I thought I should be doing and felt somewhat defeated – and frustrated. Although I felt more alert and able to anticipate everyday events (which I had lost during tx) I couldn’t easily make the connection to ‘doing things’ – so I sat for long periods thinking about it all (as I had done on tx).

It then slowly, very slowly, dawned on me that I feel I’m in a “no man’s land” – PCR negative and no longer living within treatment but not yet feeling fit and healthy with SVR negative. This road to recovery used to be known as convalescence – a term not frequently used these days, out of fashion and favour. And that describes how I was feeling too.

Then sorry for myself. In the early days of treatment I can remember, whenever some new side-effect or other appeared, thinking to myself “I knew it would be a difficult trip and here’s another challenge – so make the best of it and learn how to live with the issue positively”. I kept thinking I have gone through a year’s treatment, rarely ever feeling sorry for myself or my circumstances. Grit and determination underpinned my commitment to eradicate this virus, help my liver. Now I don’t have the energy anymore and the virus has been eradicated – I don’t have the same focus.

Some days I did feel strong and positive – getting on with domestic and everyday life but the days when I felt gloomy became more frequent. During a discussion with Ben about developing The Forum and kicking around some ideas about its future he said he sensed I was feeling a little down about all this and called it post-treatment blues.

That really named how I was feeling. As well as frustrated and angry. It was all washing over and around me faster than I could metabolise. Everything so complicated. Just to trace one thread – finance, we have really been feeling the pinch over recent months (and living off our savings now) so I had envisaged being able to take up more work soon as possible after treatment. But I’ve lost all my previous work contacts over the past two years, can’t identify jobs I can realistically take on without leaving my part-time job first, and know that the Christmas period is the wrong time for job-search generally. All this leading to gloom, frustration and anger. Lots of areas in life feel as complicated and full of obstacles. Added to this I have felt very vulnerable and very unconfident taking on activities that I haven’t done for a long while.

One of many reasons I didn’t publish recently was a recurring thought that people not yet started treatment, or currently on it, could be put off by my revelations that it ain’t over after the treatment, and people have enough to cope with already. It took me some time to realise I was simultaneously frustrated and angry that I hadn’t known it would be tough afterwards – I hadn’t thought much about it, I was focusing on treatment and achieving that. Why didn’t anyone tell me post-treatment would be this tough for me? Maybe they tried and I couldn’t hear. But I am publishing today so anyone who wants to hear can be forewarned about the possibilities.

I have now come to believe recovering from the 48 week experience must be more difficult than 24 weeks of combo therapy. It makes sense as the residual build-up of those drugs must be greater and have stronger and longer lasting effect over twice the treatment period. (I guess that’s good in terms of treatment but tough when it also applies to the ‘side’ effects too.)

As I felt increasingly caught in the gloom and the blues I reached the point of thinking the unthinkable – I feel worse now than when I started the treatment. Several times I pushed this thought, and incumbent feelings, to the back of my mind dismissing it all as negative thinking. Eventually I took the risk of sharing all this and felt better for doing so.

I can create long lists elaborating how I am worse off in several areas of my life – physically, emotionally, socially, financially and professionally. And I can list the positives in one sentence – I am PCR negative at the moment and I now weigh the same as I did two decades ago (my pre-illness era).

When lots of other people have struggled on this treatment and not been successful, it feels very recalcitrant to complain about my lot in life when, after all, I have completed the treatment and got a negative PCR result at the end. It feels very ‘off’ that I can’t just focus on those positives and carry on with my life. I feel a lot like I should pull myself up by the boot straps and get on with it. Is that a message or expectation I hear from others (or our culture) or is it just in my head?

But acknowledging this has helped me to face there are post treatment issues for me to deal with and writing this has helped me remember grit and determination are still in my repertoire. I may be feeling the negatives outweigh the positives at the moment – that’s how I am feeling today. That could change.