Living Without HepC

Been looking around at HepC websites - again. I find I am spending more time recently doing this - it is absorbing.

When I first starting to write this weblog I felt I was writing and writing, but I was not convinced there was anyone out there, reading it. You have, however, reassured me through your emails and comments that you are reading this!! And I am grateful for all the comments and questions.

I have also been reassured that you readers are visiting through the Statistics Folder on my blogging software. Like the Recent Referrers button on the lower sidebar to the right, the Stats Folder shows what other website has ‘referred’ readers to mine. It also shows Referring Searches (what phrases entered on search engine websites pointed to my site), Indexing Robots (robots from who knows where as well as search engines checking), Syndication (Newsreaders that tell my subscribers when there is a new entry on my blog), Direct Accesses (people coming directly to my blog by entering its address) and the Total number hits. So I know a number of readers come via the NHS Hepatitis C Awareness website as well as other blog sites.

Tracking back some on some of the ‘referring searches’ has led me to lots of HepC websites that I haven’t previously encountered. There are lots of websites written by ‘heppers’ over the years, mainly in the States - but very few weblogs, a much more recent phenomena. Sadly some of these websites are outdated and incomplete.

Lots are very moving. Chele, on her website, describes with an amazing articulation and clarity the side-effects of the treatment:

How am I doing? Not well, and getting worse by the week, although I’m getting used to it. I have a wide array of side effects I’m learning to live with and work around, some of which come and go, and some of which are constant companions. I am always exhausted and disoriented - my attention span, thought processes and reaction times leave much to be desired, I frequently can’t find the words I’m looking for, and have a marked tendency to forget where I was planning to go (not to mention how to get there) when I get in the car, I always have a headache somewhere around 4 or 5 on a scale of 10, have a constant fever between 99.5 and 100.5 (which frequently spikes up to over 101, and sometimes hits 102), have a nasty metallic taste in my mouth, throbbing aches in my fingers, wrists, elbows, hips and ankles and muscle aches in my shoulders, lower back and legs….at this point, all of the above are simply “givens”, they slow me down and wear me down, but if they’re all I’m going through, then I consider it a “good” day.

And then there are the “ungood” days, which generally equal the good ones most weeks…..the days when the mind-numbing, bone-crushing, soul-sucking fatigue hits, when I barely have the energy to sit up, let alone get up, and any movement feels like I’m working my way through wet cement, when staring at the wall is about the height of my comprehensive abilities, and all I can do is lie there and wish I could sleep, except that with the fatigue comes insomnia (interesting, albeit somewhat wearing, combination, that), when I’m reasonably certain that there are dead people out there with more energy and mental acumen than I have…..the days when the brain fog is so thick I could probably see it around my head if I had the energy to open my eyes, when thought (coherent or incoherent) isn’t an option, and I just give in to complete and utter stupidity….when the headache hits 12 on a 10 scale, and the body aches go from a dull throb to hot metal stabbing everywhere….when the nausea hits and I’m afraid to throw up because it might start something bleeding….these are the days when I’m ready to give up, when life looms ahead of me as just endless months of more of the same, with no hope of any better future in sight.

I feel very fortunate that I don’t have such strong side-effects as Chele describes herself having, but I do recognise the brain-fog, the fatigue and insomnia. How wonderfully she can describe it!! I wish I could write so vividly.

I also continue to read Jonathan Colam’s weblog - I can identify with his comments:

I am completely fucked off with this and want to stop. I know I can’t and I know I won’t but I have had enough. I want my life back, I am sick an tired of every spare minute of each day being taken up worrying about my health and this pissing virus. I guess I have always taken my health for granted, now it seems to walking a perilous line. I have forgotten what it is like to lead a normal life and worry about simple things. My side effects may be minimal but that does not stop this treatment from becoming all consuming.

I, too, have recently felt my life is all about treatment for this virus. I think I have settled into a routine with it recently - perhaps. I feel my life is limited by taking these strong drugs and my life is on hold while I complete the treatment. I don’t have the energy or the interest to do many of the things I am used to doing - socialising, exercising, painting - even reading is going by the board, as I notice I am losing track of the plot of the book between sessions.

Today just before Carol started an aromatherapy massage, and as I lay on the massage table, I absentmindedly scratched an itch on my shoulder and made a spot bleed. Ever the professional, Carol had a plaster ready to apply. As I looked at the HCV+ positive blood on the tissue I felt waves of anger and resentment that I have this virus and that my blood is dangerous and poisonous to other people; this then alternated with waves of “why me” which made me weep. A cathartic experience. The massage went well however and I now feel better for the experience.

So I have my moments like these - and reading about Chele’s and John’s experiences remind me that I have issues and experiences like they do because of this treatment. I admire their ability to say so directly!

I also know I have been surfing the net in preference to writing my 12 Week Review; I have been thrashing around on this one. Writing about my experience of treatment to date will inevitably lead me to face the issue - what will be the outcome of the Viral Load blood tests this week? I am more concerned about this than I have acknowledged to myself - I have been busy keeping a positive outlook!

I have been ignoring some occasional but niggling twinges in my liver recently. My ALT’s are down within normal range so my liver must be functioning ok. The twinges must be my liver getting better! Or is it?

If the Viral Load goes down I am responding to the treatment. But I must be a ‘responder’ to this treatment – the blood tests show indications that I am! And if I am not a ‘responder’? What difference will it make? If I am responding then the treatment carries on as planned. If I am not responding then I see a healthy discussion coming up about the benefits of continuing treatment if it my results don’t match the treatment protocols (discussed in entry Week 9 – Tuesday). I also think there would be every chance that the outcome of that discussion would be me continuing on with the treatment. So what’s the difference?

It would be the first time I would have to face the possibility of anything other than a successful outcome to this treatment. So far, that’s been my mind set on this one – a constructive and optimistic attitude will help achieve a positive outcome. So, I am facing it – the possibility that this journey could incorporate more twists, turns and complications. And that I might have to set my sights on a lesser goal than 100% eradification of this virus by the end of Week 48.

No wonder I don’t feel like doing much today. So I won’t be going to yoga today as there is a substitute teacher, whom I don’t know. Our regular teacher, Ofra, is in Pune India at the moment having classes with Mr Iyengar. I look forward to the benefit of her lessons from the master – and I am beginning to feel like I need all the experienced instruction I can get to help me stay physically active.

Another issue I feel I may be ‘in denial’ over is that of exercise. I am getting very short of breath frequently. When we walked home the other evening I had trouble keeping up with Carol and Phil; I was seriously out of breath whereas those two were just breathing normally – and I had lagged behind slightly.

So that’s been me over the past few days – hovering on the edge of denial and realisation that I am anxious that the results of my blood test tomorrow could be less than 100% positive. And that I may have to yet again readjust and adapt my hopes for the outcome of this treatment.

I also know it will be another fortnight’s wait to hear the outcome of the blood test. I have an appointment with Mynurse on 14 February to discuss the result – unless she telephones me first to say the tests show I am responding to the treatment.

Because Mynurse, properly and professionally, won’t discuss anything other than a positive outcome over the telephone we have an appointment set up - but I can tell we both hope she will be telephoning me ahead of the appointment! Although it is a complicated arrangement, I am impressed that Mynurse will not contemplate becoming one of those professionals who tells people their HCV status, results, etc over the phone – how many of have had experience of this happening? And the negative impact this has on us as patients … so I am happy to have a complicated arrangement rather than an insensitive attitude from hospital staff.

This entry was posted on Sunday, January 30th, 2005 at 5:54 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.