Living Without HepC

When I am not thinking about what I will do (and be like) post-treatment, I am increasingly aware of how tired I am feeling each day. I was startled to realise the other evening at work, during a lull between calls and record–keeping, that I just wanted to put my head down on my desk and go to sleep. I have never experienced this before in my working life.

And at home, it is taking me ages to do anything. Returning telephone calls and emails seems to require a concentrated effort and takes a long time. I started to write to Lu this past week and realised I had rambled on, almost incoherently, for two pages and hadn’t really articulated anything. No wits on that occasion. I abandoned the email – but did manage another day to write a more focused comment on her blog instead, on a day when I did have some wits about me. I had a telephone conversation with Niccie Rowan of the UK Hepatitis C Resource Centre this week and felt like a gibbering idiot while I was trying to articulate some point or other. (But felt quite comfortable adding if I sound like a brain-fogged HepC person on combo treatment, that’s because I am – it’s so great to be in contact with people who understand.)

I have got used to finding the trip to hospital for clinic appointments and back ‘a long day’. Now I am finding I keep an eye out for a chair when I am out shopping with Carol, as I am easily short of breath. Even my ‘restricted’ lifestyle is becoming arduous.

I have heard that the last few weeks of treatment can be difficult. And those completing treatment recently have written confirming that. No doubt there are residual effects of hosting these strong drugs in my system over the 48 week treatment, which may be even greater than for the 24 week treatment.

Some time ago I decided a good strategy to help me through would be to go on holiday during the final weeks of treatment. I am hoping this proves to be right. In just over three weeks we are going to Spain again and I will be there during the last three weeks of treatment. Doing as little or as much as I want to.

So I am not moaning or complaining about my state in life at the moment – I am content to recognise I am tired, live with it and leave what I don’t feel I can focus on or achieve at the moment.

I am also aware that my body-shape has changed on this treatment. A year ago I was finding my size 34 trousers and jeans roomy and comfortable. Then they all began to be a bit too roomy, so I hunted out old pairs of size 32 cast-offs left about by my sons. Now I am again raiding their cast-offs looking for the size 30’s. All my size medium shirts and t-shirts just look baggy and I am now buying and wearing size small. So these days I am about the size and shape I was when I first started going out with Carol 27 years ago. And I am liking it. Ironically, for a someone on a ‘harsh’ treatment regime, I feel more fit and healthy than I have in years, despite the heavy drugs. I think this is because my liver is coping again.

In terms of weight – I have lost only 5 pounds over the past 42 weeks. I have lost muscle tone, of course, living a less active lifestyle – although Carol points out that the weekly massages do help keep up tone and that my muscles are not ‘wasting’ away.

So I am hoping that post-treatment I will not find myself gaining or increasing too much. I will be watching and working with this as an issue. Certainly I have no intentions of allowing myself to return to the size and shape I was four or five years ago. Looking back at photos of me then, I can see I was swollen and puffy in the face, thick around the middle and several stones heavier (translation: I weighed about 35 lbs or 16 kgs more). Where I used to think it was only ‘middle age spread’ I can now see it was the result of alcohol and bad diet, which my liver couldn’t metabolise. I will continue to focus on keeping to a liver-friendly diet and whatever else I can do to help my liver to function and regenerate.

I have now been on this treatment for 42 weeks. It was just over a year ago I took on board my consultant’s advice to start the treatment and just over three years ago I was diagnosed with hepatitis C. What changes there have been to my life in this time.

Three years ago my day would have been buzzing with activity. I thrived on working in several organisations simultaneously on change management projects, trouble-shooting assignments, consultancy to groups, executive coaching, management investigations, and expert witness assignments in complex family law cases in the Royal Courts of Justice. And then there was my counselling therapy practice as well. So there would be meetings in various places throughout the day, hours travelling around, lengthy reports to be written, staff groups to work with, loads of information to absorb, metabolise and work with, as well as keeping track of various individuals therapy issues and progress. Very stimulating and rewarding.

Well, I say I thrived on it. But my liver didn’t. The stress of all this was taking its toll and I experienced the symptoms that I can now see related to hepatitis C – digestive pains, various aches and pains, skin rashes and a growing sense that all was not well. And alcohol was a regular ‘soother’ at the end of a long day.

By contrast, my day today has been spent meditating and doing a few minutes of yoga, washing up dishes, going to the supermarket, helping with the lunch, enjoying a cup of coffee with Carol and sitting in the sun for a few minutes. Later this afternoon I will do a ‘half day’ of counselling sessions. By the end of the day I will probably be as tired as I used to be doing a ‘busy’ day.

Yes, that’s life on treatment especially at week 42. It does lead me to wonder about life after treatment. Will I want to return to that pace and level of work stress? I do miss the buzz – but not the pressure and strain on my health. I have changed considerably over this time and it is both exciting and worrying to think about how these changes will impact on what work I will want to do in the future. In the meantime I can only begin to mull it over and ‘wait and see’.

I have come home from a long weekend in Brighton feeling more exhausted than when I went – for a rest. I wasn’t surprised that I was pleased to be back in our friend’s flat by early evening each day to just sit quietly and go to bed early. However I was surprised to be so worn out by a two hour stroll around the marina and harbour breakfront on Sunday morning. And all the other wandering around we did in Brighton itself. By Monday morning I was feeling nauseous and unsettled enough in my stomach I didn’t want to eat any lunch – a first experience.

I think it must be the case that the latter stage of this treatment brings residual effects. It seems to take me more energy to do the things that even a few weeks ago wouldn’t have been tiring. And the little things seem to throw me off equilibrium – the seagulls waking me up and keeping me awake. The air at the seaside was damper than the city – and I wanted a woolly jumper on while the locals were comfortable in shorts and t-shirts. Etc. And it takes me longer and longer to recover when I go off-kilter.

However, none of these things deter me or keep my spirits down for long. They just seem more minor impediments to be coped with inside this reduced life on treatment. Soon I will be starting the countdown until our next trip away to Spain – aware this time that my reduced lifestyle will continue to look approximately similar to the ‘manana’ and ‘siesta’ culture prevalent there. So my pace will fit in very well with the lifestyle there.

Yesterday morning I received my papers from the General Social Care Council confirming I have been admitted to the register of social workers. I had been vexed about this application earlier in the year when I had to declare my HepC status on the form. The question they asked on the form was “Do you have a physical or mental health condition that may affect your ability to undertake your work in social care?” I wanted to answer “No” – as my HepC has never interfered with my work. But I discovered the helpful instructions required me to declare any “serious communicable diseases”. To me this is a double-bind question. I have it in mind to raise this issue with the GSCC now that I have been registered but cannot say I feel I have the energy to do so at the moment.

There are more positive uses of my time and energy. Having established that, I am off to the garden to spend some time in the sunshine before I go in to work this afternoon.

As planned, Carol and I attended the Brighton FaceIt Campaign Exhibition on Friday and Saturday, as did Nick (and Vicky), Michelle, Sam and Catherine. All of these people feature in the photos on display and we decided to turn up and help staff give out pamphlets and talk to passers-by. The local person living with HepC, Nimrod, did interviews with the press. It was unfortunate that the pamphlets were delivered to the wrong address (in London) on Friday morning and had to be biked to Brighton, only arriving mid afternoon. While the exhibition created imposing and strong images it is noticeable that passers-by struggle to find the focus or a central point where they can engage to discuss the issue (and the lack of pamphlets particularly made this evident). But I gather there is talk of incorporating a table in future exhibitions to provide this sort of focus.

Obviously having the people in the photos on hand clearly added value to the exhibition, reinforcing the aspect of real people living with this disease and not just professional models. I also noticed how it reassured members of the public who are anxious about their own health to talk to someone who has first hand knowledge of Hepatitis C – if only to reassure them or advise them to see their GP about their medical questions.

There is clearly such a lot of potential that those of us living with Hepatitis C can add to the NHS Awareness Campaign, to champion the cause and help those who may unwittingly (or sometimes otherwise) have the virus to recognise the importance of seeking help to ensure their long term health. These days we are used to seeing celebrities being effectively used in campaigns (such as the NSPCC Stop It campaign, testicular cancer, etc) but with ‘newer’ issues it is those of us living with the virus, and who are prepared to speak up, that are in the vanguard. Let’s hope those running the Campaign recognise this and find creative ways to mobilise that potential.

One individual in the vanguard is Martin Bolton whose story has today appeared in a full page article in a national daily, The Express. On his own, Martin has managed to generate sufficient interest in his message about Hepatitis C awareness that two newspaper articles have recently appeared about him. This is a man with no prior media contacts, no knowledge of the communications industry but as a person living with Hepatitis C he has achieved the sort of publicity that the NHS Awareness Campaign needs.

And as someone also in that vanguard, I find it gratifying that this blog and it’s Forum have made an impact for those living with HepC.

I notice that the Forum has now over 100 signed-up members since it opened 16 weeks ago. This kind of response shows there is a need for a place on the internet for discussions about living with HepC whether it’s practical advice and information about the disease, the treatment or support through the experience. There have been over 1600 comments on 200 different topics made during this short time. The Forum has about 200 visitors every day, with many readers who don’t sign up or leave comments– but who do keep coming back to read what is happening.

I have heard a number of comments from people that they were warned off reading about Hepatitis C on the internet as there so many negative sites and horror stories out there. People say only those with ‘bad news’ have been motivated to write about their experiences.

So it has been important to establish a Forum where people can get ‘good news’ information and share the ‘bad news’ experiences in a way that helps and supports others. And have a banter and a laugh along the way – as a sense of humour and perspective is also required on this Hepatitis C journey.

According to my calculations, I have 8 more injections to go. Not sure I want to keep flagging this up as a headline each week. I find I am thinking about coming to the end of this treatment with some ambivalence. Yes, it has been tough – and ‘harsh’ (to use the word employed in the debates in Parliament to describe hepC treatment). But it has also been a significant life experience for me and I want to ensure I am just free of the virus and the side-effects but not the positive experiences and relationships I have gained over the period of treatment.

Already people are asking me what I will do when I finish treatment. It has been a tight year for us financially because I stopped my usual work to make a ‘stress-free space’ to do the treatment. So I will need to think about the financial realities of life at some point too. (No, I’m not going to take on ads on my blog to earn some income!) However, it is too early to address this issue but it’s there on the ‘back burner’.

I will continue to blog through the post-treatment period. It seems there a variety of different experiences of what it is like through this period. So far, not a lot of this has been documented for others to read. And I believe people want to read about HepC post-treatment experiences as much as they want to know what treatment is like.

I was thinking about this yesterday when I met Jane for coffee in Central London. She had just taken her last ribs and been to the hospital for her end of treatment blood tests. It was a pleasure to meet Jane and talk about our experiences. Meeting people you already have a ‘virtual relationship’ with is a bit odd – like needing to catch up ‘face to face’ with where you are in the cyber world. But we touched on a lot of areas in our chat about HepC treatment and its impact on our lives. I really enjoyed our conversation and could have gone on talking but I realised I was running late.

The LiveChat at The Hepatitis C Trust was due to start at 2 and I got myself lost around London Bridge (again) and was late. Catherine, Charles, Sam and Adam were very welcoming and we set about the LiveChat immediately. It was good to chat with people and the discussions were lively … a bit of banter and a bit of serious too. I enjoyed it and ended up staying on an hour longer than planned. We did experience a technical hitch part way through because the Trust’s computers went offline, but the others online were able to keep chatting in the meantime.

It was good to touch base with people at the Trust. I always feel very relaxed and easy there – knowing I don’t have to ‘mind’ my brain-fog or other symptoms showing because everyone there knows immediately what it’s about and what it’s like.

* * * * *

I wrote those few paragraphs yesterday over a four hour period. It was ‘one of those days’ for me yesterday (post injection). Woolly-headed, couldn’t concentrate or focus on anything for long. Easily distracted by the door-bell, telephone or anything; couldn’t anticipate what I needed to do next; unable to collect my wits. Very odd experience – and when it happens, it seems to go on for the whole day. Then another day, like today – it’s gone. I certainly won’t miss those type of days, come the end of treatment.

While I’ve got my wits about me today I am anticipating and organising myself for our trip to Brighton on Friday. Looking forward to it. Not only the Exhibition but also the chance of a break from routine at the moment. And a chance to enjoy some of the sunny weather which has been widely forecast for the weekend.

The FaceIt Exhibition will be at the Churchill Square Shopping Centre in the centre of Brighton - on the external Piazza of the Churchill Square shopping centre, opposite BHS and in front of the Madison’s Coffee Shop. The Exhibition will be there on Friday and Saturday August 12 & 13 during opening hours.

One of the things I have got organised – taking my camera. So I will no doubt post up some photos of the event. In the meantime here is a mock up of it.