Living Without HepC

I am just realising it is only 6 days since I saw Mynurse and got my end of treatment results. Seems like a while ago now – must have been a busy or full week. Yes, it was.

The news is gradually ‘sinking in’ that I am free of the virus. And this is unexpectedly raising ‘issues’ for me. I can identify feelings of loss and am facing ‘good-byes’ I hadn’t really anticipated.

I am realising I am no longer ‘inside’ treatment – that experience which fairly much encapsulated and defined my existence for the past year. I have not recovered yet but I am not ‘on treatment’ either. It feels a bit like being in ‘no-man’s land’. I have spent the last year focusing on myself and my treatment but now it’s time return to everyday life and focus on other people and things outside me. So it’s time to say good-bye to me as the ‘centre of attention’ - in the way that ill people need to focus first and foremost on their needs and requirements, as do the others around them.

I am also having to say good-bye to my membership of that virtual peer group of ‘people on treatment’ I belonged to within the online HepC community. I have now joined that other group (the carers, the newly diagnosed, those waiting for treatment, those who have finished with treatment). There is a particular bond between people online while they are going through treatment and this is evident in the way they relate to each other. While I can understand the issues, experience and feelings of treatment I am no longer ‘there’ in that place. It’s different. I now will have to find and settle into another role in the other group. Because of my history with this group ‘on treatment’ and its online development, I am feeling this loss quite strongly – and in a way I hadn’t anticipated.

And, of course, it is a big symbolic ‘good-bye’ to the virus. We can all still feel sad at the demise of an enemy.

There are things to celebrate too. Not just the achievement of coping with 48 weeks of harsh treatment and the successful eradication of the virus – but the return to health.

Physically, there are a few things to report. The rash on my face has subsided – quickly enough I didn’t need to see any doctors. It is no longer the source of continual itchiness and peeling scaly skin. My hair has been coming out in handfuls for so very long there can be very little left. The fall-out just might, perhaps, have slowed down and surely the promised new growth of post treatment (curlier and wiry) will soon appear. During treatment, the hair on my arms grew thick and downy; it remains this way and still comprises of long strands happily and softly floating off in all directions. Don’t know about the llama lashes – never could see evidence of that despite the comments from Mynurse and Carol on this.

Appetite hasn’t really changed – over the past year I rarely ever felt hungry and had to keep to a set routine during the day to ensure a healthy intake of food. I wonder if my sense of taste has recently returned. On treatment I experienced the (commonly referred to) metallic taste in my mouth only for a few days at the beginning and then no more; I did think my sense of taste had altered however - most things just tasting bland. Recently, however someone offered me some nuts and seeds containing spices. Couldn’t stand the strong taste. Having heard the warnings about putting weight on after treatment I am surprised to note I have lost 2 pounds this past week.

That may be due to being more active and mobile this week. I did have a rest one afternoon but otherwise have been on the go from morning till at least 11pm most nights (as I work till 10 pm three nights per week). I feel my energy is returning and the brain-fog lifting. Well, for the most part. Just as I think I am getting back to having some wits about me I am suddenly confronted by forgetting the most rudimentary and obvious matter.

Now that it’s safe to tell me, people are sharing how worried they were that I looked so grey in the face during the last few weeks of treatment. And that I was barely able to shuffle about. I was told that my eyes have now got ‘the light back in them’ – at one stage I had a kind of flat glazed look apparently. And throughout, I thought I was just walking around and looking fairly ordinary!

Well, that was this week - wonder what Week 4 will bring?

It is with a little relief and a great deal of pleasure that I am writing to say I have got the results of my ‘end of treatment’ PCR:

UNDETECTABLE

There was a slight glitch this morning when I saw Mynurse – my ALT’s had gone up to 44. The was done on the day after I returned from Spain. Mynurse ordered another liver function test today and called me soon after I returned home with the results (my hospital blood lab is faster than the tube ride home from the hospital!!) to say my ALT is now 31. So my Spanish diet may not be agreeing with me as much as I had previously thought. But I am relieved to isolate this as a glitch and not have to worry about it as a trend.

I am next due for another test at six months after treatment. For months I have been saying I will have a test at end of treatment, then 3 and 6 months. But Mynurse says this is not their protocol, so I don’t know where I picked this up. So my next PCR test is next April 2006.

As for the rash on my face, Mynurse says she hasn’t seen this previously as a result of medication so I am seeing a doctor at her clinic on Thursday for further examination.

This past week has seemed like a full and busy week. As well as returning to counselling and my part-time work I have been concentrating on contributing more actively to the running of the household. All these months Carol has fairly single-handedly kept up everything. In the past, I have occasionally mentioned doing something like mowing the lawn – but haven’t mentioned that’s ALL I did. It’s been Carol carrying everything in our house. I am grateful and fortunate to have had such support. But clearly time to shift the balance. And I am beginning to when I can. (Managed to sort out the broken light fixture in the downstairs toilet after several days of putting it off.) (Although I am mentioning only that – this time I have been doing other things as well!)

I would describe my experiences over the week as unsettled. I am having trouble finding and maintaining my equilibrium. At some stages during the treatment I did find ‘equilibrium’ – I felt fatigued, limited and reduced but had a sense of being on an even keel with it. At the moment some days feel good and other days I feels as weary as I did before.

There have been days this week when I was feeling like the fog was lifting and I was able to anticipate and think things through; then I would discover I had completely forgotten something obvious and realised the fog still lingers.

I had a terrible bout of insomnia one night – last checking the clock at 4:30 am before finally falling asleep. Unusual for me.

Most unsettling has been my face. (Can’t resist pointing out others may have said the same thing before.)

The itching and scaly drying skin continues. A raised skin surface, like a welt, appeared on my cheek on Wednesday. Red patches have flared up in several places and my skin feels like sandpaper. It is all very itchy and the constant irritation of it led me to take a Piriton on Thursday morning. Having avoided any medicine or proprietary drugs over the whole treatment period this was most unlike me. Spoke to Mynurse about taking the Piriton (just in case). She is right in her comment it will make me sleepy. It has, but not like the heavy-duty stuff I have been taking over the past year.

I am not sure what this itchy red irritation is about. I like Carol’s view that it is the toxins and waste products of the medication de-toxing from my body – some through the pores of my skin. And the toxins are irritating sensitive skin and causing a reaction. I suppose this will be confirmed – or not, when I see Mynurse tomorrow.

Yes, I am due for the appointment tomorrow where I will hear the outcome of my end of treatment PCR. Although I can entertain the notion that it won’t be good news, I have a belief it will be clear.

My appetite hasn’t changed although I think my sense of taste is changing – I found something or other very, very spicy this week. I haven’t experienced such strong tastes for a while. I also notice I am hungry sometimes – not like the ‘no appetite’ I experienced consistently through treatment. But I haven’t wanted to eat any more food than I have been over the past few months. And my weight has not altered. I am mindful of comments that others have made that the weight goes back on after the treatment stops. As I am happy with my ‘new shape’ – which is just like the ‘old me’ several decades ago I am not looking to gain any weight – and my BMI and weight remains within the “Ideal” category.

Haven’t been round on the blogs or the Forum much - I am sure there is a lot to catch up with everyone’s news and really need to be sure I have enough time set aside to read and enjoy. Will be doing this soon.

I don’t know how long I will track my “Return to Health” post treatment phase with Week numbers – how will I know when to stop and declare myself healthy? I suppose forthcoming 3 month and 6 month viral load blood tests become the milestones.

Thinking about the past week and how I have coped, it is difficult to say that I feel any different than I did during treatment yet. As I write, I am aware of the constantly itchy skin around my eyes and the irritated and inflamed red blotches of skin on my face. I’ve had this for months and it still continues. I continue my twice daily ‘cleanse, tone and moisturise’ regime which I believe helps prevent my skin becoming too scaly or too itchy but which I really loathe doing.

Yesterday I did have a sense of triumph that I had managed to carry out a full day of ‘ordinary’ activity all day on Friday – without needing breaks, slowing down or a rest during the day. On the go from about 8 in the morning to 8 in the evening. It’s been a while since I could have managed this pace of activity.

I attended a Conference for Liver Nurse Specialists on Hepatitis C and gave a formal presentation during the day. I was aware that I was in friendly company however, and that 4 days “post-treatment” they weren’t likely to expect a patient to talk like they had all their wits about them. Just in case, I did start with the disclaimer that I am looking forward to the brain-fog clearing and the return of my wits, as I have spent most of the last year without them.

Despite regularly listening to people on treatment talk about their experience, this group of nurses was interested in hearing about my attitudes and holistic approach and how these had helped me to complete my journey through treatment - as well as hearing about counselling, complementary therapies and online support (blogging and the forum). Afterwards, several professionals told me they had been touched to hear my honest account of my experiences and how the journey has changed me – and that was rewarding feedback for me. It was also gratifying to be asked if I would be willing to talk to other groups of professionals about treatment services and support for people going through treatment.

As I listened to doctors presenting clinical research information on Hepatitis, transplants, treatment length, nurses talking about HCV services in various cities, prisons and ID (infectious Disease) centres, and Charles Gore from the Hepatitis C Trust talk about the comparison of awareness and services in the UK and through the rest of Europe, I felt fortunate to be in the company of people passionate about the issues of Hepatitis C and keen to move the HCV agenda forward both medically and politically.

As I said, I did have a period of feeling celebratory yesterday but it was short-lived when I faced how exhausted I was really. And that continues today. In order to prepare for the conference I had spent time in the previous few days trying to get my head together to organise what I would say in my presentation and considerable time worrying whether I could keep my head together on the day to deliver said presentation.

I am sure many people will recognise and understand when I say the preparation took a lot of hours in my slowed-down state to produce very little on paper, generated lots of mental agitation and worry that I could be too slowed-down or exhausted on the day to give my talk or even show up. Despite the difficulties I managed it so that must be a step forward on my “Return to Health”.

Off to Yoga now – not sure I can do a class or that I want to push myself too hard but again, time for another step forward to getting healthy.

We arrived home on Monday and my main task yesterday was to get myself to the hospital for the battery of “end of treatment” blood tests - including the key PCR test.

I did have a very quick peek at the Forum on Monday evening and was really touched to discover the thread Ron - Finished The Endurance Course introduced by Paul Overcomer. Thank you all for your comments and good wishes (to Carol as well as me). Knowing that it has made a difference to someone else’s experience of living with this virus is important to me, as it was a key reason for starting this blog.

Today I am realising I must have had some notion in the back of my mind that once I stopped taking the medications I would feel better quickly, perhaps even instantly. I say that because my head knows this won’t be the case, but I do feel distinctly disappointed to feel much the same 48 hours later without medication as I did before.

Carol says she feels relieved that the treatment is over – the watching and worrying about what the side-effects could lead to, etc has taken its toll on her over the past 48 weeks. I will feel relieved only when I begin to feel some relief from this reduced fatigued state. It has again taken me two hours to really ‘come to’ this morning. And sinusitis (the change in climate, back to the damp UK?) has not helped.

I am again feeling overwhelmed by the practicalities and ‘timetable’ of everyday life – dealing with the letters which arrived while we were away, the light in the downstairs cloakroom has stopped working, another credit card has arrived with (well, without actually) a new ‘chip and pin’ number to join the other dozen or so whose pin numbers I have lost or confused, the shower unit has a leak. I feel frustrated I can’t find the energy or enthusiasm to get on with these things. I have been ‘going with the flow’ and not worrying about this type of thing for so many weeks and months now. I just want to move on and get going now, but it ain’t happening yet. Writing about this now, however, has helped clear some of the angst and made me realise I have done enough things today not to feel totally incapacitated.

What has been happening is lots of emails from people who have been reading an article about this blog on the BBC News Online website in the Health Section. According to my stats counter over 2000 people visited this blog on Monday. By making an article like this on their website, it is evident that the people I spoke with at the BBC several weeks ago about their coverage of Hepatitis C have listened and taken on board that they can present this issue differently. So thank you to the BBC news people.

And a number of people have emailed me direct or left comments on the blog saying they found it useful to discover my online journal and sharing their experiences with HepC. It is really gratifying to receive these messages. Though in my current state I know I will not be able to answer them all this week.

Their responses also confirm my conviction that there is a silent majority of people with Hepatitis C who do not have access to adequate support services and who are hesitant to use existing services supplied through ‘street’ drug projects because of the stigma. And it does set my mind to reflecting on somehow developing online services further.