Living Without HepC

I double checked this morning. Monday was the beginning of Week 37 and the interferon injection I did in the evening was the 38th injection – meaning I have only 10 more injections to go to complete the 48 weeks. And 11 more weeks on the ribavirin tablets. Getting there.

I still remember last Friday – clear-headed and feeling emotionally balanced and happy. Several of the days since then have been the familiar ‘slow’ or fatigue days. Having said that I have been fairly busy with various activities and seeing people and that memory of what I can feel like (as on Friday) helps me to remember what I can be like and what is possible for me to do.

And I find I am beginning to be ready to think differently about commitments. For a long time I have felt ambivalent about taking on commitments – social, work, administrative, etc, because I won’t be able to predict what I am up to ‘on the day’. For example, my last trip to the Clinic. I wasn’t really feeling in good shape and the horrendous episode of ‘riba-rage’ with me losing my temper in the Underground on the way overshadowed that trip to see Mynurse. Amongst other things I learned from that experience is that I could work and think differently to get myself ready for these commitments, prepare myself and plan strategies in advance to help me through.

Mynurse, by the way, telephoned me yesterday to see I am alright after that day before she went on her holiday. She is very kind and supportive that way.

I received an email from Nadine in San Diego which she has sent to a number of people. After a long and difficult 48 week treatment she has suffered a further six months of recovery from various side-effects. She writes to say her doctor has now declared her cured. Congratulations Nadine after your long struggle. You have worked hard to overcome the virus and have succeeded. What an achievement.

Over the next few weeks & months I look forward to hearing similar news from fellow bloggers and others in the HepC online community as they hear their news. It can be done and we can get there.

Sam from The Hepatitis C Trust has also written to me about a petition to the European Parliament to take on, amongst other HepC issues, the development of a European strategy to deal with HepC. Having the read the petition I agree with the arrangements cited in the petition and support it. I will be printing and signing a copy and asking those I come in contact with personally to sign it. I recommend you read the petition which you can read and print out from the HepC Action site.

I received a Campaign Update bulletin rounding the news from the Nottingham Exhibition – the first leg of the regional tour.

Two local people, Nick Green and Liana Stevens, who are living with hepatitis C were photographed by Michele Martinoli, who has successfully cleared the virus, for the exhibition. Michele travelled up to Nottingham to attend the event and Liana, Nick and Dr Stephen Ryder, Consultant at the Queens Medical Centre, took part in media activity on the day.
In the build up to the exhibition a feature appeared in the Nottingham Evening Post about Nick Green and his experience of living with hepatitis C.
BBC Radio Nottingham also signposted the event on their news bulletins prior to the exhibition.
The exhibition had a very prominent position in Nottingham’s Market Square adjacent to the tram, which has an extremely high footfall.

Apart from the prominent display in the middle of the city, residents of Nottingham and the surrounding areas were hit with messages about hepatitis C throughout the day on 7th July with coverage on every bulletin of East Midlands Today from breakfast until the evening featuring an interview with Nick Green.
On Friday 8th July, Central News ran a feature on the exhibition and Liana Stevens’s personal story about living with hepatitis C on the evening bulletin. The same day, the Evening Post ran a one-page feature on Liana’s story.

82,000 East Midlanders were also targeted through an insert of the FaCe Your Past leaflet in The Nottingham Recorder and over 3,000 leaflets were distributed in the city centre over the course of the exhibition. The Nottingham DAAT also delivered the leaflet to GP surgeries in the area prior to the event.

Calls to the FaCe It information line - 0800 451451 - increased markedly on the first day of the Nottingham exhibition.

All this rounds out the news we heard from Nick when he recently wrote about the day on his blog.

So well done Nick and Liana for fronting the exhibition and doing an excellent job with the press and media and contributing to the success of this event.

The next event will be held in Brighton on 12th and 13th August 2005. Both Carol and I are hoping to attend this event – dependant on the planning details falling into place. I will post up more details about the Exhibition as I receive them.

A quick blog today - really to report I am feeling happy and alert today.

I started the day with a massage from “CaroltheComplementary Therapist” - what a great way to ‘come to’ and let go of the musle/joint aches, tensions and toxins.

As some of my blog posts recently have focused on tough times and complaints about my situation in treatment, I decided it is also important to comment on the good times too.

I really feel positive and content with my lot (and opportunities) in life today.

And I recognise I have done alot of emotional/psychological work this week - letting go, healing, integrating. Good stuff.

So living with this treatment is again proving to be a very rich experience. Lots of the time I feel like an eighty year old man – slowed down, breathless, needing a nap, preoccupied with my body and internal workings, foggy in the brain, small world, etc. And now there’s another dimension – behaving and emoting like an adolescent waiting to emerge from this life stage.

A lot of us spend a lot of time and focus on what is happening physically during this treatment. And there is a lot going on physiologically and medically in this process.

But I am becoming increasingly focused on what a strange place this treatment is for my head to have to be in for a 48 week treatment period. The psychological impact of treatment is probably as meaningful for me as the physiological.

I remember at the beginning of treatment Mynurse talking about the impact of the combo meds, particularly interferon, on the body. The interferon can sometimes help with previous injuries or weak spots in the body, or exacerbate those difficulties (these are my words but I think I have accurately recalled the meaning of what she was saying). So the meds could effect an improvement in previous joint pains/inflammation, for example, or re-focus on this weak spot provoking further difficulties. This, of course, is an implication for the physiological side of treatment.

What interests me is that there could be a parallel effect in the psychological side of the treatment also.

I have no doubts that the medications are promoting heightened emotional response – confirmed by others on treatment and to some extent indicated in the manufacturers list of side effects.

I am identifying my current psychological (emotional) experience as a re-capitulation of adolescent feelings. My adolescence was fraught - certainly full of ‘weak spots’ and injuries. So these ‘weak spots’ and old injuries are being inflamed at the moment.

It presents me with the opportunity to re-visit these old issues and to find a different perspective or way of handling these emotions. Letting go of old emotional and behavioural patterns. A new view. Healing.

It’s an interesting hypothesis that the treatment psychologically (emotionally) impacts on previous ‘weak spots’ or ‘old injuries’. A parallel process to the physiological. It’s an hypothesis which I will continue to observe and comment on as I continue in this journey.

And another thought floated through my head today. My un-characteristic behaviour and angry & ‘violent’ feelings on Monday could have been connected with recent bombings on the Tube. Yes, they were my feelings and actions. But they were focused on travelling arrangements (ie the Tube). I had ‘blocked out’ any thought of travel arrangements being curtailed or altered due to last week’s bombs on the Tube. Just as I had blocked out feelings generally about the bombing last week because I found them too painful to deal with (as I wrote last Tuesday).

Suddenly the reality of the bombs impacted on me (the station I needed was closed). Angry feelings erupted and I was ranting in the corridors and spaces of the Tube where no doubt the feelings of other passengers also reverberated and echoed. There have been news reports of Londoners feeling wary and unsettled as they continue to use the Tube for their usual journeys. I’m guessing passengers are also carrying alot of angry and sad feelings too as they travel on the Tube recently. Again the experience of inner feelings coinciding and connecting with other feelings external to me in the environment. And overpowering me – so I couldn’t control myself easily.

Again, my ‘weak spot’ (having blocked out painful feelings over recent events) was exacerbated and inflamed in a dramatic way.

Rich experiences indeed.

Monday was an eventful day. It was my birthday and as well as a trip to the HepC clinic and meeting a friend for coffee, we were due to meet Ben & Sofia for dinner in a restaurant. This was a major expedition for me and I suppose I was tetchy to begin with.

Without going into all the tedious and miniscule details, I got irritable about the travel arrangements and, of course, Carol was the recipient. I hadn’t even considered that our usual train route would be disrupted by the current station closures – so the necessary detour threw me. I couldn’t absorb what other route we needed to take and I kept getting more cross with Carol’s solutions (which were quite accurate as it happened).

As Carol reminded me later I was talking in a loud raised voice (ie shouting) and at one stage stating I felt like ‘punching in’ one of those illuminated ads on the walls in the tube station. She also told me that other passengers were clearing the area as I continued to rant loudly. She wasn’t sure she wanted to continue travelling with me. I didn’t care.

By the time we reached the hospital we had arrived at some form of truce but Mynurse quickly ascertained I was in ‘riba-rage’ mode. She was supportive to us both and calmed me down somewhat, using up her lunch break time to do so. It felt so ridiculous to be so vexed about so little and to cause such a fuss.

I am astounded at how impossible it was to control myself. I wouldn’t really have punched in the ad (would have damaged myself in the process!) but I could feel the impulse to do it.

And I felt so badly that Carol received the brunt of it – and she apologised for having upset me. Carers and partners really do have a tough time of it too on this treatment.

I had left this behind me by the time we met our friend from Spain for coffee behind Liberty’s so we spent a pleasant hour in the sunshine. After some browsing in Liberty’s, John Lewis and Selfridges Carol & I met Ben & Sofia for dinner. We had a wonderful evening in which they both took great care of us - and gave me several lovely birthday gifts. We arrived home about 10 pm and I was exhausted.

Reflecting on Monday’s events last evening, it occurred to me that I haven’t felt so emotive, so out of control of my anger and sadness, since I was an adolescent. I can recall those teenage days of not being sure how I could cope with the waves of strong emotions, not sure why I had these feelings, what was going to happen next and a sense I should handle all of it better than I could (and behave ‘grown up’).

I also recalled that sense in adolescence of ‘waiting’ (similar to my current experience of looking forward to the end of treatment). Waiting until this period of my life would come to an end and I would move on to a different place, adulthood.