Living Without HepC

After Mynurse’s clinic, I went to visit The Hepatitis C Trust in the afternoon. Tucked away amongst the streets near London Bridge I found the Trust, with a shop front belying the size of the spacious office inside - a bit of a tardis, as Charles Gore put it. I found everyone very welcoming and friendly - and I had soon met Catherine, Jane, Radcliffe and Sam.

Like others of you who read this blog, I have called their Helpline and found Sam very helpful on my queries about blood tests - so it was good to meet her in person. If you haven’t used the helpline I would recommend it. The Hepatitis C Trust Helpline - 0870 200 1 200 - is open for calls from Monday to Friday from 12.00 to 6.00pm (12.00 - 7.00pm on Thursdays).

And there is another telephone line for support for partners, friends and family of people with HCV. This is run by Maren who is happy to take calls every Wednesday afternoon from 2pm-5pm. (However, if it is an emergency you are welcome to call outside of these hours - leave a message and she will call you back as soon as she can.) This Helpline telephone number is 0207 371 0081.

I have referred to that frisson of interest when I meet others who are HepC+, that sense of being with others who know what it means, the common ground. I suppose it highlights that we can feel isolated - although I know for me it means I can be somewhat less guarded about my brain-fog, specific dietary requirements, etc.

Well, I quickly found that same sense of camaraderie at the Trust, as so many people I met shared with me details of their status or treatment, etc. It made me feel more relaxed about forgetting where I had put some papers down in the office, forgetting my scarf when I left, all the things I often do. Whereas I usually try to smooth over these occurrences, hoping no one will notice or think “he’s really lost it”, I felt I could just mutter “brain-fog” and everyone knew what I meant.

While we were looking at their website, I found more pictures by Michelle Martinoli - she has photographed a number of the staff, again as part of her project on people with Hepatitis C. Click here to go to that page on their site - and read the background stories of some of the staff at the Trust.

We also talked about the Patients Association - of which Carol and I have been members since December 2004. Although the Association is a recent innovation, I was concerned to hear that membership has only reached the area of 187 people or so. It is free to join and represents our voice - so I would recommend you consider joining. Information can be found by clicking here to go to their web page.

One of the projects the trust is undertaking is a patient survey asking about people’s experiences of alternative medicine system, diet, therapy, exercise regime, treatment, unusual practice, in fact anything to combat this disease. Information can be found on their site (click here) The results so far are fascinating. They show that 95% of us have tried alternative therapies - the figures show the types and the outcomes.

It was good to find such a positive resource for Hepatitis C working with and for people with HepC to campaign and provide services.

Oh, and later on at home, I did injection #17 (only 31 to go!). Stomach area today. Several red blotches still hanging about on the side due for injection, so I had to poke around to find a clear site. First time I have had any glitches - not that this was a big one. On first injection I felt it really hurt - like I had pierced something so I withdrew the needle and had a second go nearby. No problem this time. I was really surprised - in previous weeks the needles have been easily inserted and no pain at all.

My first appointment of the day was with Mynurse at her clinic. I had arrived a few minutes early and was there when Mynurse brought out another patient at the end of their appointment. It was Wendy Meister. If you have been reading both her and my blogs you may have realised that Wendy and I have twigged that we have the same nurse - and I recognised that Wendy’s first treatment injection coincided with my regular appointment, and that we might meet up at the clinic.

It was really good to meet Wendy in person - but what a moment for her to have to meet someone new! Five minutes after she had had her first self-injection of interferon. I remember my own experience of the first injection - I couldn’t really have had a conversation with anyone at that point - I was too pre-occupied with having just injected the strong and dreaded pharmaceuticals into my body and aware of every sensation happening to me like it could be a symptom. I tried to bear this in mind as we spoke about blogging, hepC and so forth. But Wendy was coping with it all admirably and remarkably calm with it. I found myself tuning in to Wendy’s excitement about the start of the treatment process and to the hope that this is the start of a successful journey through treatment - what we all aim for! We chatted throughout the time Mynurse saw her next patient and said good-bye when Mynurse came to collect me.

After the intensive weekly appointments at the beginning of treatment I was aware of there being a longer gap since we last met. So amidst my usual bantering and teasing comments, Mynurse managed to extract from me the details of any current symptoms and to discuss my current progress. Somehow (do we really not know how? brainfog!) I managed to forget to ask about using alcohol swabs beforehand on the injection site - a topic I referred to finding out about recently.

As it was the first time we had met since my Week 12 blood tests we discussed those - and I discovered the news about my results is better than I had realised at the time.

The NICE guidelines refer to showing a “log 2″ drop in viral load in order to continue treatment. What my results showed was even better - no viral load to measure. I hadn’t really taken this on board at the time. So, based on this, there is a 90% chance I will achieve a positive outcome at the end of treatment. In discussing this, I think both Mynurse and myself were careful to recognise that the next period of time could bring changes and there are no guarantees on the outcome. But, this is encouraging news and I can’t resist celebrating it as a positive.

I am freezing. I cannot get comfortably warm no matter what. During my massage with Carol today I realised I was cold. Carol’s treatment room was warm and inviting as usual, with the air warmed above usual room temperature; Carol was in short sleeves and her hands felt comfortably warm as she massaged the aromatherapy oils into my skin. But I kept feeling cold air on my face, didn’t want to take my socks off, etc. The massage was great and I could feel the toxins being shifted under the expert hands of the therapist and the knots in my shoulders being dissipated! But I couldn’t warm up.

I was out this morning to the supermarket and aware the air temperature outside is chilly today (with the temperature hovering just above zero) and I was warm enough in the supermarket to unzip my coat. Otherwise I hadn’t noticed I was particularly cold.

When I did notice, I realised I have been feeling chilly several times over the last few days. Last evening, I wanted to have a ‘throw’ rug wrapped around me when I sat down. Everyone else in the house - Carol, Phil, friends of Phil’s, all seem comfortable enough and I thought I was having a ‘chilly five minutes’ by myself. However, today I am aware that I can feel the coldness of the chair fabric through my clothing. As well as cool air on my face. I checked my temperature - no fever, in fact below 35 degrees Celsius.

And my head feels ’swimmy’. Several times I have found myself beginning to feel like I am reeling as I move about. And ‘vacant’ and tired. Again I just can’t find it to be concerned about doing anything. It has been several hours since I started this entry - walking away (to sit down and think, well, vegetate really) and coming back to it.

And irritable. Carol’s ‘neutral’ silence after some comment tells me - “that reaction was OTT, Ron”. At other times, Carol does a nice line pointing out to me - “that was a bit liverish, wasn’t it”. Lovely expression, probably in common usage in Victorian times (although it also appears in earlier times, such as in Pepys Diary in the 1660’s) - but it says it, referring to the anger behind the comment and at the same time attributing it to the HepC and/or medications.

And there’s no point mentioning breathlessness - that just goes without saying these days.

At one stage today I sat thinking – I want my life back – to the normality I had before this treatment and all its hassles. The side-effects of these drugs are as much of a problem to put up with as the HepC. If I just stopped the treatment I wouldn’t be having all these difficult days, peculiar feelings and fatigue.

Then I thought no, I don’t want the virus back. I guess I have to recognise – this is “my life” at the moment. I was hoping I would feel differently after I wrote all this down. And I guess I do marginally. But it is only the reasonable, logical part of me that recognises this is “my life” at the moment and get on with it. ‘Keeping on going’ is probably my main task in this phase of my treatment.

Tomorrow I have an appointment with Mynurse at the hsopital. And in the afternoon I am visiting Charles Gore at The Hepatitis C Trust. So, I suppose I should be organising myself for the day - so I will stop there. PS - I think I have finally warmed up a little now all these hours later.

I have just come from a photo-shoot at the studio of photographer Michele Martinoli. She was taking a black and white photographic portrait of me for a forthcoming Hepatitis C Awareness Exhibition. Michele is a photographer who is also HepC+ and has done a series of portraits of others who are HepC+ for this exhibition. When we talked a little about HepC and treatment Michele expressed surprise that I am currently on treatment - you don’t look like you are on treatment. I was surprised enough I forgot to ask how she usually can tell or why I don’t look like I’m on treatment! I will the next time I see her.

I also met Nick Green, who is also HepC+ and a lecturer in Education from Derby University; he was recently interviewed about Hepatitis C for the Evening Telegraph of Derby. (You can read that interview by clicking here). He has recently started, and stopped, treatment twice - he is hoping to begin again in April. From what he said I guess he is in quite a lot of ongoing pain and discomfort with symptoms. (I feel like I am talking about his information ‘behind his back’ but I know Nick will read this - he commented he had seen my blog, and I hope I am not misrepresenting him in any way!) Nick said he hadn’t met other HepC+ people since he was diagnosed, so I experienced again that ‘frisson’ of discovering other individuals in the world who understand what it’s like to live with this virus. I also met his wife (whose name I have forgotten - put it down to age or brain-fog, with my apologies!) who is obviously committed to caring for Nick - and is also ‘going through treatment’ too (in the way I have referred to Carol doing).

I was both excited and nervous about going to this photo-shoot. Excited to be meeting two more HepC+ people. Nervous because I know the photograph taken today of my face will be blown up to 3 metres high and put on public display! In Leicester Square in the middle of London for two days next month - as part of the Hepatitis C Awareness Campaign.

I will write more details about the event nearer the time. The exhibition will be portraits of people living with HepC, including that of David Marks of the Beach Boys. He will open the two day exhibition on 16 March in Leicester Square. There are plans for the exhibition to travel to other UK cities in the near future.

It is good to see that one of the major daily newspapers, The Independent, has given half a page today, albeit on page 6, to the “hidden epidemic” of Hepatitis C.

In an article headed “Hidden Epidemic Of Hepatitis C Threatens To Overwhelm NHS With 500,000 Liver Patients”, the paper states:

More than 500,000 people in the UK may be infected with the virus, a study by doctors at Southampton University has found. Experts said that the government figure of 250,000 cases was a “gross underestimate”, and warned that the NHS was facing a time-bomb of potentially fatal liver disease as a result of ministerial failures to tackle the problem.

Professor Rosenberg, a liver expert from Southampton University, said:

“The problem is that many people look at these risks and don’t think it applies to them. But there is a huge cohort of people who 20 or 30 years ago may have dabbled in drugs, even just once at a party, who could be infected.
“They are judges, businessmen, lawyers. They are the ones who could have had the virus for 20 or 30 years now and could soon start developing end-stage liver disease.”

The article also states:

Out of the estimated 500,000 infections, just 60,000 people have been diagnosed and only 3,000 are receiving treatment.

And ends by saying:

Public health experts are concerned that the stigma surrounding hepatitis C and a widespread assumption that it is a “low-life” disease discourage people from seeking a test.

And these experts recommend a campaign on the scale of the HIV/Aids health warnings in the 1980s to publicise the threat.

Charles Gore, of The Hepatitis C Trust, has not missed an opportunity:

“There is a firestorm that is starting to brew in hepatitis C and nothing is being done about it. The Government promised a big campaign but we have seen very little action. I am extremely disappointed, and very concerned that we are going to be engulfed by an epidemic of liver disease very soon.”

(The article can be read in full at The Independent Online Edition.)

None of the information is new - I referred to the estimates of 500,000 undiagnosed cases when I wrote on 9 December (”It Does make Me Cross”)
about the stigma around HepC. (But it’s good to be able to identify the source of the information as Professor Rosenberg of Southampton.)

I am pleased, however, to see some recognition that HepC is not just an active drug users’ disease - and to see an acknowledgement that it has been stigmatised as a “low-life” disease. I am sure I speak for others when I say, I have had to deal with my own raging anger that I have a chronic disease, and my own fears that it could be life threatening, so I now don’t want to have to deal with stigma and discrimination from society at large! Hepatitis C is no more, nor less, ‘respectable’ than any of the other diseases, such as cancer, which our modern day lifestyle has brought us. And none of us, including active drug users, deserve discrimination or stigma.

Is this a bit of momentum building in the awareness of the media and the public about Hepatitis C at last?