Living Without HepC

I guess I’m really chuffed. BBC Radio 4 are doing a play about HepC and how the HepC blogging community grew from me starting this blog in November 2004 with others starting theirs and joining in, forming an online community.

I’ve seen the script and it made me laugh and touched me too – the interchanges between me and others through our blogs does making a surprisingly interesting story. It tells about the experience of treatment and the supportive relationships which grew in the early days of blogging. I’m delighted a BBC producer recognised the potential in the blogs and pulled together an interesting take on it all.

Several of us were invited to Bush House a few weeks ago to meet the producer and the writer collating the blogs into a script – me, Jonathan, Martin Wendy and Paul. Ijaz and Lu couldn’t make it sadly.

Their efforts have produced a 45 minute afternoon radio play which will be broadcast on BBC Radio 4, June 5 at 2:15 in the afternoon. It will also be available to listen to on the Radio 4 website

I know the producer had hoped to have an online chat after the broadcast but this has not proven possible. I understand The Hepatitis C Trust may well have one after the broadcast – I’ll confirm details when I hear them.

I also suspect I may get a copy of the broadcast which I may be able to make downloadable on this site – although this may not be possible for technical and copyright reasons, we’ll see.

The title of course refers to the side-effects of interferon causing long eyelashes and making me feel like a grumpy old man.

When I first faced the prospect of treatment and could find no information on the internet about what’s like to live with HepC and go through the combination therapy treatment, I decided to write this blog as an online record of my journey. I decided it would help me and I hoped it would help some others too travelling along the same path.

I have seen a blogging community grow, then an international Forum community develop and now that decision continues to have an impact through this play. I guess I really am chuffed.

It has been a stimulating and busy week. I did want change – and I’ve got it. I won’t say a lot about the work, as this is a blog about HepC, except that I can understand why the organisation needs help and has imported a team of experienced professionals to get things back on course.

What has been very interesting for me is to start a venture where no one has any idea about my HepC status or that I have been ill – that’s irrelevant to my being there, of course. It reminds me of living in the world of ‘muggles’. (Hey, ‘heppers’ being like ‘wizards’ – there’s a metaphor to ponder.)

Of course HepC has been a big part of my life over the past few years and I’ve made everyone around me aware of it (including total strangers at Media Conferences, etc). In making this change I felt aware of feeling very vulnerable – HepC is no longer an explicit part of my identity and suddenly I’m back in the hustle and bustle of the consultancy work world again (away from my safe haven of the counselling job). And feeling very rusty about the policies and legislation relevant to the work of the organisation – as it it’s been three years or so since I last used all this information.

It’s a bit odd to have people regard me as just ordinary again – not an ill person or someone living with a disease or one of those people in the Face-It campaign exhibition. It’s made me realise that I have this notion that work colleagues and fellow professionals will think I’m weak or ‘not up to it’ if I have an illness. Not sure whether that comes from the work culture I operate in or belongs more to me personally. I’ll reflect further on that some time.

I’m not particularly planning to keep my recent journey through illness a secret – it’s just not relevant at the moment to talk about it. I did feel I was walking around with an alter-ego though. Several times I did think – do a Google on my name and up comes My ‘Hepatitis C’ Weblog and the Forum, and a completely different persona than the one people are encountering in person this week – ‘dark suit and tie professional’.

I can see staying in a hotel will become tedious fairly quickly and looking for a flat to rent is going to be an additional job to do on the top of the one I already have. So change and more change.

Overall the week went really well and I am happy I haven’t felt symptoms or illness to distract from getting on with life. And I’m already thinking about what bills to pay off first.

Throughout March I seemed to spend all my time sitting about and waiting for recovery. The posts on my blog reflect this kind of vacuous state – nothing active. And the posts I didn’t publish are even drearier – moaning about lists of symptoms and everything remaining the same. I recall feeling I just couldn’t get anything together much – make anything happen. All thinking and wishing and no doing.

By the beginning of May it has all changed. This morning, I am grabbing a few minutes on the computer before I set off down the shops for a bit of last-minute shopping as I am off on a train journey this afternoon to a new world of work.

Tomorrow I am starting a ten month assignment working five days a week – my first full time work in 3 years. (I am starting off with 4 days week for 3 weeks to ease myself in.) And it’s not local – it’s in a city 250 miles away. I will need to lease a flat short term as I can’t face the prospect of living in hotels that long. It’s a troubleshooting interim management role in an ailing organisation. I was approached to be part of a small team ‘dropped into’ the organisation to improve performance change culture, etc. Because it has been necessary over the past few months to spend more money than I was earning, the offer came at a good time – and is not one I could really afford to turn down.

So, having sat about a few weeks ago wishing for a change in my life I’ve now got massive change.

I’ve resigned from my job as a telephone counsellor and case manager. Leaving was very sad – I really enjoyed the benefit of supportive colleagues there whom I will miss. I also finished up my work with several counselling clients at the young people’s counselling agency I have been working with.

I’ve also been busy with the media conference I wrote about, another meeting at the BBC about a radio play based on this blog and several others (I will write more about that soon), dealing with some difficulties on the Forum, getting quotes for a new central heating boiler as ours is on its last legs, cranking up my laptop to take away and a myriad of other things to prepare.

I feel like I am now just about in the real world again – sleeping seven hours a night (not 9 or 10 as before), getting up earlier in the morning and busy on the go with things to do all through the day.

I feel I have made a psychological shift away from being an ill person. Now I’m ready to test myself with the demands of a busy work life again. Today I can feel some trepidation about coping and surviving it. Tomorrow I shall face the reality!

Oh, and I kicked the cigarette habit too – seven weeks ago tomorrow.

I started this blog because all the information on the internet about Hepatitis C was medical or research or textbook information. Other than a few cobwebsites in the US (mainly) with some short stories I couldn’t find anything about what it’s like to live with HepC and go through the combination therapy treatment.

Once I started a weblog conversations began with other people living with HepC and soon a small community of bloggers started. Then people began to have conversation with each other and I realised we needed a Forum – a place to talk, and to connect with others going through similar experiences. That community has grown and people feel empowered, and supported, by their contact and connection with other people. That’s “using the Internet as a collective force of unprecedented power” according to the ideas of the organisers of the Conference I was asked to participate in yesterday

That citizen groups like ours can threaten and challenge the media establishment was the hypothesis behind introducing a group of various net citizens into groups of international media executives attending this conference. CEO’s, presidents, VP’s from international newspaper groups, Al-Jazeera, BBC, Global Broadcasting Company, CNN, Wikipedia, and on and on. The great and the good of the media world.

So I briefly talked from the Conference floor about the online HepC community and “had a conversation” with a small group of media executives about the blogging community being a threat to their traditional news reporting profession and that they hopefully in time will find ways to work collaboratively with citizen reporting.

An interesting day but I did come away feeling the conversation was all one way…

More about the WE Media Conference on their site.

Many thanks for all your messages about me achieving SVR. You have all been supportive to me over this journey. I appreciate the feedback about the blog and the Forum. It’s helped me keep going during the difficult days.

And I wish you all health and happiness in your journey too

Ron