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.
