Living Without HepC

Hi Colette

I have read the four comments you have posted on my blog over two days this week.

Clearly you expect people to be sensitive to your plight, your struggles and your feelings - but you display no empathy to someone who is on ‘pegylated interferon and ribavirin’ treatment and has their own struggle with the virus.

You have written to me demanding explanations and comments on haemophiliac issues as if I am “the campaign” or ” the government”. I find that insensitive and offensive.

I can answer comments from my own experience and understanding only. My understanding of the Awareness campaign is that it is targeted at people who may be at risk of, or not yet diagnosed with, Hepatitis C. It isn’t about people already diagnosed and their situation. Your comment that the campaign is about drug use and shared needles, not haemophiliacs, is inaccurate and misplaced.

I think it is also divisive. It implies that some groups with Hepatitis C are more worthy or “less to blame” than other groups. I believe none of us deserve to have Hepatitis C - drug users or anyone else. If we want the stigma about Hepatitis C to be removed, there is no point in groups within that community stigmatising each other. In insisting we recognise your specific plight is worthier, you denigrate the rest of us with Hepatitis C. Actually none of us deserve to have HepC, no matter how we caught it.

You have taken space on my blog to campaign for your own cause - issues very specific to yourself.

However, it is my blog - and this is Why I Have Set Up This Journal:
1. So I can track my own progress through the journey of my treatment, noting how things are changing for me over the year.
2. To provide a first hand account for others who may be recently diagnosed HepC+, those who may suspect they are, or carers and relatives, of what it is like to go through treatment.
3. To raise the profile of a somewhat hidden and overlooked minority group within the HepC community - those who are not injecting drug users.
4. To challenge the stigma faced by all the HepC+ community - the underlying assumption that we have caught HepC because we are drug users and therefore deserve the disease as retribution for our ways.

While your own issues may be worthy of a campaign - this blog is not the place for it. Own your beliefs - and set up your own site!

I welcome comments on my blog and enjoy a dialogue with people who want to use the space for the reasons I have listed above. And my experience is that, overall, people do want to use it on that basis.

I do not welcome comments from you, or anyone else, who wants to use it for other purposes. In future, I will remove comments - from you or anyone else, which I think fall outside those parameters.

Ron

It is the morning after the launch of the ‘Out of the Shadows’ Exhibition Event in Leicester and I am trying to gather my thoughts and feelings about the day.

It was exciting to be doing something out of the ordinary - not every day is my photo portrait on public display in Leicester Square. And unusual to be showing up at the Marquee night club at 9 am on a weekday morning. Well, it would be unusual for me to be going to a night club at all. It was the venue for meeting and having coffee, and just across from the exhibition itself.

The exhibition was set up facing the Empire theatre on the north side of the square. Most of the people in the portraits had been able to come for the press photo-call. We were organised into a line, shoulder to shoulder in the same order as our portraits behind us. Then what seemed like thousand of shutter clicks kept reverberating as the phalanx of photographers took their shots. This seemed to go forever, with different photographers calling out directions to look this way or that. More shots of each of us in front of our portrait, then in small groups - with Michele the photographer or David the Beach Boy. Then we had to do the shoulder to shoulder line-up again. I don’t remember how many people (lots) were taking photos but I am sure thousands of photos were taken. I think I stood smiling non-stop for a half hour.

It was a bit reminiscent of a wedding where everyone lines up for the photos - but at top notch professional speed and with a real buzz in the air. As we stood shoulder to shoulder I experienced a great sense of solidarity with everyone in that line-up - a very empowering sense that we can make a difference on the issue of awareness about hepatitis C.

Best of all I enjoyed meeting and seeing people involved with hepatitis C in one way or another. I hadn’t met some of the others in the portraits before so it was good to talk to them - Eileen, Neil, another Neil, Gemma and David. And to see Michele, Nick and Sam again.

The latter part of the morning became a meeting point, after David was whisked away for his live studio interview with Channel 5, with loads of people mingling about. I was pleased to meet Martin (who often comments on this blog) and his wife Carol. I also spoke with a chairman of a PCT, two representatives from the pharmaceutical companies and a policy advisor from the Department of Health. Charles Gore and Jane from the Hepatitis C Trust were there. Theresa, the HepC nurse from St Mary’s, came to say hello. As did Mynurse and her colleague from my hospital.

By early afternoon I was certainly flagging but still running on adrenalin. Michele, Carol and I decided to join the young women giving out brochures on hepatitis C. Carol proved herself to be the best at this, circulating all round the square to people sitting in the mid-day sun.

So today I am wondering where all those photos will end up - haven’t yet heard any news that they have been used in the press. I know the exhibition has had some impact - over 639 people directly accessed this blog yesterday, a sizable increase over the day before.

To see more photos from yesterday please click here. All photos taken by Carol, Michele, Ashley and me.

Too exhausted to write about today’s launch - will write about this interesting experience tomorrow! I’m off to bed - having been up since 6 am (a long day by anyone’s standards, let alone a poor HepC ’sufferrer’)

I said last week that I would follow up on the issue of swabbing the skin with alcohol, or not, before an injection. I have spoken with Mynurse again about this - after she had checked with other specialists in this area. From what I understand, there is no clear or universal response on swabbing with alcohol before injection.

What Mynurse pointed out is that some professionals take the view that washing the site with alcohol better protects against infection. However, the alcohol must be allowed to dry for over a minute, otherwise the alcohol enters the body when the skin is pierced by the needle tip. Often people don’t wait long enough and experience the stinging of the alcohol during the injection.

The argument against swabbing is that wiping the area with alcohol removes the natural flora on the skin surface - to some extent removing the ‘natural’ protection which is also useful to protect against infection. She also pointed out wiping the syringe tip with anything undermines its previous sterile condition and, if the wipe has just removed flora from the skin surface, this too can be transferred to the syringe point increasing the risk that this is inserted into the body with the needle tip.

Mynurse also said that research shows there isn’t a significant difference in outcome between the two approaches in effectiveness of preventing infections.

However, as Mynurse points out there are pros and cons to both approaches - and different medical units have their own views and policies around swabbing before injection. While this doesn’t produce a definitive answer to the issue I think it highlights the issues involved!

As I write this today I am aware that I have just not been ‘firing on all cylinders’ today. It is another one of ‘those’ days. The day after my injection. (I am not going to say this is a pattern now - too many times I have thought I see a pattern, only to discover a contradiction.) Despite feeling like this, I have attended a business meeting already this afternoon and am about to see clients for counselling. I feel I can carry out my commitments for the day but it certainly feels like I have ‘less energy’ than I had yesterday - and I hope I will have tomorrow!

I spoke with Gemma yesterday by phone - arranging some filming for tomorrow at the media event. I can empathise with her feeling some apprehension about herself for the day - she is due for injection this evening and she HAS spotted a pattern of feeling rough the next day. So she is concerned that the media event, and her film project, need her attention on a day when she forecasts she won’t be feeling well. I suspect this is a dilemma for all of us on this treatment. It’s difficult to plan ‘everyday life’ when one never knows if that could prove to be a ‘bad day’, or the event falls on a day when one can guess it could be a ‘bad day’.

Well, this morning was a planned early start. A car picked me and Carol at 7:30 am to take us to St Mary’s Hospital where we were due for an interview with Channel 5/Sky News. There will be a live stuio interview with David Marks of the Beach Boys on Channel 5 News on Wednesday at 12 noon, talking about the launch of the Photographic Exhibition in Leicester Square. Supplementing the studio interview will be an introductory taped piece featuring Prof Thomas, as an expert in HepC, and me, as someone living with HepC. So the plan today was to tape these latter interviews at St Mary’s.

As we left 3 ½ hours later I was marvelling at how long it takes to generate an item that will probably last only a few minutes in a news broadcast.

Obviously there were gaps for us while Prof Thomas was being interviewed elsewhere so we spent time in the Hepatology Unit on the 10th Floor. It was a bit of ‘nostalgia’ for me when we were shown into one of the treatment rooms while we waited. It was in this room I had my liver biopsy and the post-procedure ‘6 hours of lying down’ before I could home.

I am not a patient at St Mary’s but I had been referred there to see Prof Graham Foster. At my first appointment with him he said he was going to take up post in another hospital - and I asked if I could change hospitals so he could continue to be my consultant. This came to pass but, back to the point, my liver biopsy was carried out at St Mary’s. So, I was delighted to recognise the nurse, Theresa, who had supervised the biopsy that day. I remember her from that day as kind and caring - when I had been so nervous about the procedure and then so fed up with waiting afterwards for the time to pass before I could get up and leave. And she is still kind and caring - offering us drinks while we waited and asking about my treatment, etc. It was good to see her again.

The interview process was interesting, if not slow. The reporter, Raoul, had a chat with me beforehand. I could tell that he was interested, sympathetic and ready to listen but he hadn’t much previous knowledge about Hepatitis C - perhaps not surprisingly. It was a challenge therefore to answer briefly and succinctly general questions such as ‘how has living with HepC changed your life’ and ‘what was it like being diagnosed’. Big questions.

It also made me aware that I have travelled through my journey with HepC a long way! What I am concerned about now in my travels are very different issues than when I was first diagnosed. So a confusing mix of talking about my concerns of today (life-changes, stigma, etc) with issues I have moved past (diagnosis, fear of treatment, etc). As an example of the difficulty juggling this ‘mix’, it was Raoul who pointed out in the interview - and of course you don’t drink alcohol. I am so used to alcohol not being a part of my life I had completely forgotten to point this out as a change in my lifestyle.

I can see why they talk about some people being ‘good communicators’ - juggling this mix and talking about points salient to your audience. I look forward to seeing the results on Wednesday!

I am also aware that the fifteen minutes or so of taped interview will be edited. What I have said can be cut and spliced in any way - even taken out of context. I don’t think I said anything which on its own would be contentious - and my sense of yesterday is that they won’t do this. But I can see how it happens.

I am thinking of an interview I saw with Gemma, done by BBC news. The main clip of her talking shows her saying something to the effect that health services or the government didn’t provide enough information for her and that someone must be responsible. I don’t know if that, in itself, was her main concern but that was presented as her main message. So, again, I am interested in seeing what is broadcast tomorrow!

Back home again - Monday is injection day. I notice that several red splotches, which often appear later at the injection site, on the left side of my stomach (site of injection a fortnight ago) are still there - whereas they have been disappearing on other injection sites. They don’t “hang around” longer than a week or so on my left or right thigh nor on the right side of my stomach. This is something I will discuss with Mynurse when we next meet.

Injection #19 went well - although I feel tired earlier again and plan an early night.

I also found time yesterday to return phone calls and emails which have gone unanswered for some days now. I telephoned T who co-ordinates the Support Group - of which I have been an erstwhile member (unfortunately the group meets at a time during the week when I have commitments to my counselling therapy clients). I was concerned to hear that one of the group on treatment at the moment is having a very difficult time - catching lots of infections (colds, flu, etc). T points out he swims great distances and works out regularly with weights but doesn’t eat regularly. He has apparently become very paranoid about his vulnerability during treatment - to the extent he has stopped for two weeks and is thinking perhaps he will only do half-doses, in attempt to protect himself from more infections. He has also turned off his mobile for days and doesn’t get out of bed. I know he lives alone and therefore will not have anyone to help him regain his balance - keep going, keep eating, cut down the exercise if it is making you vulnerable to infections, etc.

I am convinced of the importance now of having a carer or a buddy to support you through this treatment. I can see how easy it is to lose perspective and get ‘off track’. It is also striking that what for one person is a great positive to support their treatment can, for another person on treatment, become a negative. I am thinking of Jonathan who regularly works out and swims great distances to positive effect whereas this friend is finding it having the opposite effect.