Living Without HepC

Back from holidays again – and off to work this morning. My bag is all packed and the taxi booked to take me to the station for the 200 mile journey. (Then a late start to the work day which will go on till 7 this evening to make up the time.)

Several times during our stay in Spain I was aware how different life is this time from last year when I was on treatment. Being there again reminded me how slowed down and debilitated I was. Climbing up the steps in the ‘old quarter’ had almost become impossible – though I had been determined to continue to do so. I needed several rest spots along the way. This time it was up the steps at a quick pace without any extra exertion or stopping.

It has also led me to reflect on how very fortunate I have been in getting through the treatment and achieving good outcomes. I am aware that not everyone gets these outcomes – recent news of people relapsing is distressing. I can only imagine how it feels for those people and their families. It reminds me that there are only statistical chances in beating this virus – nothing is guaranteed. And again, this virus is so unpredictable.

It also reminds me that even SVR carries a statistical chance to it. It may be less than 1% chance of the virus reappearing but it means I can’t really totally forget all about HepC. While I can move forward with my life and get back to some normal way of living again it would be foolish to forget that possibility. And also foolish to forget I still have a compromised liver.

The virus may have gone but the damage it caused my liver (fibrosis) is still there. In time the liver will repair itself but I doubt that will have happened yet. On three social occasions in Spain I tried a glass of red rioja. I didn’t finish any of them but Carol began to look askance at me when I accepted the third invitation in as many days.

While the rest of the world regards me as recovered – back to ordinary life and work, I continue to keep HepC and the state of my health very much in mind. This relationship with health/illness is an interesting area. It’s one that I am discovering that academics and professionals are increasingly focusing on, particularly the use of the internet as a support mechanism.

I have had a request from someone doing research at Bristol University to post an invitation on the Forum to participate in her research in this area, exploring how telling the story of their illness helps patients in their recovery. Through Ben I am making links with professionals in North America also looking at the same areas and measuring the effectiveness of support communities on the internet.

All of this brings up continued thoughts about this blog and where it is going now. I started the blog with specific objectives in mind. I have recorded my experience of treatment and living with HepC. After treatment I continued to record my recovery to health. But now what? How interesting is it for anyone else to read that I am generally doing well and have no HepC symptoms or difficulties to live with? I have several times thought of winding down this blog, as others who have completed treatment have done with their blogs. There is something healthy about moving away from being ill and leaving the experience behind. Letting it go – or at least, not hanging on to it. At the same time my interest in the internet experience and online support is still there.

And there is the reality of The Hepatitis C Forum. It is still going strong and continues to attract interest from all over the world. Someone from Australia reported that their HepC Nurse recommends my Forum to all her patients.

So I will continue to mull over “what next” for this blog and share those thoughts as I go.

Llama Lashes and Grumpy Old Gits, the BBC Radio 4 play, was broadcast while I was away so I didn’t have the opportunity to hear it. The producer very kindly posted all of the participants an mp3 copy of it on disc. So Carol and I listened to it the morning after we retuned. Like others we were alternatively moved to laughter and to tears.

Many thanks to everyone who took the time and trouble to leave comments on this blog about it or emailed me direct. And to those who commented on the Forum.

All of us whose blogs were featured were pleased to have contributed to another vehicle and opportunity for awareness raising about HepC.