Living Without HepC

How interesting! I was suspicious about it on Wednesday, convinced it was happening on Thursday and today it is definite …. my right eyelid has ’slowed down’ to the extent my blink rate is less half that of my left eye.

Remembering that Mynurse warned that a permanent side-effect of interferon can be damage to the optic nerve, I decided to ring the hospital this morning. Within five minutes I was speaking to a ‘hepatitis doctor’ who asked about my vision, checking it hadn’t gone cloudy or different on my right side. He then suggested it wasn’t a problem with my optic nerve but they would check this out when I come to hospital next week.

Carol and I had a bit of a laugh then, saying my appearance wouldn’t endear me to anyone on a Saturday night out. But I don’t know about that - it looks like a slow lecherous kind of wink in a funny way - perhaps I could do better than Carol thinks!

At work this afternoon my colleague Jacky said she had this happen to her some time ago. She insisted it isn’t a side effect of the interferon at all - just fatigue, as she had had. She very kindly got out the office First Aid box and made an eye patch and bandage for me so I could rest my eye whilst working. I then spent the rest of the afternoon explaining to other rather startled colleagues what had happened to me.

Another colleague, Kate, has offered to loan me an eye patch on next week - she has a collection in a variety of fashion colours. (Don’t ask - she’s like that, our Kate!)

The ‘interesting’ bit is what it is like to have your appearance altered in this way - to be confronted by my own vanity - I don’t want a permanent tic or slow blink on my face to be distracting every person I encounter.

After I realised it could be a serious problem affecting my optic nerve - and was reassured it doesn’t appear to be, I then thought this could be permanent. Some side-effects of interferon apparently can be - they appear during treatment but never leave again.

During the day I also noticed another feature. You know what it is like after you leave the dentist and the ‘freezing’ affects your mouth - making eating or smoking difficult? I experienced this during a cigarette break. As Carol pointed out this evening, these are the features of Bell’s Palsy. So I will be asking for this to be checked out next week!

I keep saying what an adventure it is to be on this treatment journey. Well, at the moment it also feels like a nuisance to have this. It feels like a full time job tracking symptoms. I can see how people end up becoming ‘professional patients’.

Injecting myself has now become routine - a simple procedure carried out in a few minutes. Still no flu-like symptoms. I now have a month’s supply of medication at home and I don’t need to return to Mynurse’s clinic at the hospital until 4 January 2005.

My splotches are now following a cycle - they appear at the end of the week on that particular injection site then slowly fade. Each week, the new splotch seems less livid and vivid, as well as smaller in diameter, than last week’s. Won’t be able to count the number of treatments by this method as planned!

But some other symptoms are appearing regularly. Rhinitis or sinus pains are occurring almost daily. Today I have a pain in the back of my neck which could be from Yoga yesterday or could be chemically induced. My sleep is still fitful, although Carol’s suggestion of putting a few drops of the essential oil vetiver on my pillow has helped. It does seem to induce sleep.

I felt very irritable today for the first time. Well, for the first time I am aware of. Our local council has asked for objections to their latest proposals for parking in our neighbourhood. And I did write a grumpy letter in reply. I really think this is chemically induced, like the sensation of alertness when I can’t sleep. Actually, I really fairly indifferent to the parking proposals but something caught me in the moment. I can also feel it about everything in general today. I think I am protecting others around me from it. I wonder if Carol would agree.

I cannot find any appetite and although my head tells me it must be time to eat, it feels like a chore to put food in my stomach. I can’t tell whether I have had enough. How odd. But I won’t waste away. I have in fact gained two pounds since I began treatment. No doubt the requirement to eat Danish pasties and flapjacks to keep up my blood sugar levels has had an impact!

I look forward to the weekend break as much now that I work only part-time as I did when I was fully occupied. I want a day to laze about. I didn’t so much laze about today as really never ‘come to’.

This afternoon we ventured out to the nearest shopping centre for a few things. I was aware of the bombardment of noise and jostling of people in the Christmas crowds. Christmas music playing in each shop, more music in the shopping centre walkways, music coming from portable players carried by people collecting for charity. And the flashing lights! Everywhere.

In the queue in Marks, I heard a woman in her forties speaking decibels above the rest - “It is a pretty bra, I always buy underwear in sets, I get a few pairs of pants at the same time so they’re in sets”. More than we needed to know. Then in a confidential tone almost as loud as the rest - “do you change your bra everyday - no I don’t either”. Amazing. She was behaving as if she and her companion were totally on their own in some world completely apart from the dozens of people standing within earshot. Meanwhile, I was feeling very connected up to an inordinate amount of stimulation and overload and also feeling increasingly unable to cope with it all.

I began to feel like my head was swimming - not quite dizzy, but perhaps I might be lurching to one side as I walked along. Very distracting. I think this is my low haemoglobin levels - lack of oxygen to the brain? Or is it low blood sugar levels?

I also notice my breathing is shallow and that I get out of breath easily.

I fear I am beginning to sound like an elderly man in his eighties! I also fear that these haemoglobin and sugar levels are beginning to affect me. I know I have to go back for a further blood test on the 21st December. I fear that something might be going sufficiently wrong that my treatment could be undermined or put in jeopardy.

It does make me cross - the simultaneous presentation of Hepatitis C and injecting drugs. The media and the government make reference to both together. Lumping us all together and stigmatising all of us.

I know that HepC was originally identified in this country through injecting drug use, and that the government’s initial response was to put funds into drug projects to work with this epidemic. I know because I had to go to a Drug Project as a client to access the services of a support group. A number of my fellow group members have been injecting drug users. I don’t feel judgemental about their previous activities nor do I feel any superiority over them.

But I do feel that the current presentation of HepC and drugs simultaneously invites/suggests/affirms/corroborates the notion that HepC=injecting drugs and that those who have HepC have only themselves to blame because they chose to inject drugs. I don’t feel any of us should be blamed for having HepC whether we have been injecting drug users or not.

It does remind me of the early days of HIV when it was seen as a gay plague visited on homosexuals as retribution. Nowadays, the profile of people who are HIV+ is recognised as very different to the early days and there is not the same assumption that people deserve their illness.

I think the media and the government need to be responsible in their approach on this issue and anticipate that the profile of HepC+ people is changing already and doesn’t just comprise the injecting drug users they are focusing on. In his presentation, Sir Liam Donaldson made reference to there being a group of mid-life professionals who may be undiagnosed with HepC. I think he is right. However I thought it was unfortunate that he illustrated his reference to this group by using an image from the rock festival Woodstock and saying there may be people who experimented with drugs in their youth, become infected and still not realise. Again the reference to drugs.

Sure HepC was first noticed here in the drug injecting population but are we also noticing the number of people infected through blood products, mass injected medical treatments and immunisations using glass syringes, dental practices, needle-stick injuries to health care professionals? Are we going to continue to infer that these people too are responsible for catching HepC? And the people who have been infected through shared toothbrushes, razors, tattoo needles and all the other identified risk factors?

I suppose it could be argued this is where we need to start from and my views are somewhat ahead of where we are. But I don’t think I can stop hoping for a more balanced approach to Hepatitis C coverage.

It does happen. I noticed a breaking story today from “The Peninsula Qatar’s leading English daily” stating that 2.8% of their population is HepC+ (compared to .5% of the population in England). No mention of drugs or implication that those infected are to blame.

A more balanced approach in this country could encourage those who have been infected by ”risk factors’ other than injecting drugs to come forward. That is what the government says it wants - while continuously and simultaneously refering to Hepatitis C and drug taking in the same breath.

I suspect there are a lot of people who are ‘in denial’ about being HepC+ but I can understand this to some extent. It isn’t easy to admit to having a disease associated with the stigma and judgement that your illness is self-inflicted and deserved. It isn’t easy to take the risks with your career, your family’s social relationships, your children being discriminated against at school, your insurance questionnaires, your mortgage application, your application to professional organisations, etc.

The current climate does not make it easy for that undisclosed sector of society to come forward. So far, it has been estimated there are between 200,000 and 500,000 people in the UK who are HepC+ and undiagnosed. I suppose we could see these statistics change if infections from the other ‘risk factors’ are increasingly and more openly identified. And if we stop stigmatising those who are HepC+.

Apologies to those of you waiting to read about the press launch. I confess I have posted this entry after the day - I was side-tracked by the side-effects and didn’t get to the computer at all!

I was so tired when I got home from St Mary’s Hospital I slept for an hour; I went in to work at 3:30 feeling exhausted and came home at 10 pm wide awake and alert but physically depleted. A bit of a pattern to be coped with!

However, I did see a press launch and the media at work. At 9 am, in a small room on the 10th floor of St Mary’s Hospital a small group of journalists and officials gathered. Sir Liam Donaldson, Chief Medical Officer for England gave a short presentation about the government’s awareness campaign on Hepatitis C and two questions were addressed from the floor.

The event was almost entirely populated by “suits” (both men and women) who soon gathered around the coffee and croissants pursuing their agendas and catching up with someone or other. Carol and I were the only ones not in “suit” mode. So I didn’t need “Patient Case Study” tattooed across my forehead as people seemed to know!

I was so struck by this. How naïve, it is what we all know - people dress to indicate their status and role. A few years ago, it would have been part of my professional work role to show up to presentations and receptions like this in “suit” mode. So I was confronted by my changed role and status - from professional colleague to patient.

No one from the press wanted an interview with the “Patient Case Study”. When I later saw the press coverage for the day and saw the BBC news website picturing someone injecting, presumably, illegal drugs I felt some relief not to be associated with this.

Looking at the press coverage and the launch I suppose I was left wondering why it was all so low-key….