Living Without HepC

I am still feeling a bit off-centre and, I guess, slightly out of control. I am realising, sometimes with feedback from Carol, that my thinking and decision-making at the moment isn’t what it usually is.

Have been worried about Phil in Bali over the past week – he sent various emails & texts saying he continued to feel unwell after arriving there, all of which made us worry about his health. To our relief, he returned safely yesterday and saw the GP who reassured him he is okay. To my dismay, within hours I found myself ranting at him yesterday for stealing all the internet bandwith to download MP3’s when I wanted access to my blog – and for playing ‘house’ music at such a loud volume.

I also think I ‘wrong-footed’ myself with my other son Ben in an email – displaying an incredible lack of insight and sensitivity. Not sure whether I’ve caused any damage or not.

I also had a call from a small organisation in the ’social welfare’ sector asking if I would take on a ‘trouble-shooting’ assignment helping them devise an action plan which will satisfy external standards inspectors. Not a ‘heavy’ assignment I thought – and a chance to be more productive (and generate some income as finances are tight!). When I thought about the timescales and deadlines I recognised I have done it again – put myself back in a stressful position. So this morning I have ‘resigned’ from the assignment.

Carol pointed out I am already behaving in a stressed-out way at the moment – without taking on additional commitments!

It also reminds me of my original commitment when I started this treatment – to forego my usual work areas for this year while I give myself every possibility to lead as stress-free a life as possible to support my treatment. It would be a shame to compromise that now at this stage. I am increasingly convinced that my first shot at treatment will be my best chance to clear the virus permanently (I think there are statistics which show this – rather than it being my opinion!) and I won’t be taking chances which undermine this.

However, I also know I keep coming across creative ideas and projects I think would be interesting and useful to do. And I want to do them now! But I guess I am recognising I need to pace myself and work within the limitations set by my meds and my commitment to the treatment.

I have started the day reading all the comments on yesterday’s blog entry. Thank you all for your supportive comments – it does help. And then the post arrived with some Nioxin shampoo from Jonathan. Many thanks Jonathan! And an email from Patient UK to say they have listed my blog on their site. And The Hepatitis C Trust have asked if I will host a live web chat for them regularly. And the director of a drug agency that commissioned me to work on their strategic planning told me this morning that he has recommended me to another agency looking for help.

So many positives to help me restore my equilibrium today. Thank you.

I’m writing a quick blog as I am aware I haven’t posted anything since last Thursday. I worked one of my occasional weekend days on Saturday (and another coming up this Saturday) so I felt weary by Saturday evening – and didn’t go to bed when my body told me I was tired, so then felt drained on Sunday again.

Possibly this was a factor in me feeling like I did yesterday. It suddenly came to me – I have had enough of this treatment. I want out. If I had another genotype I could be reaching the end of treatment shortly, instead of looking at the OTHER HALF of the treatment left to go. Like someone else has observed – this treatment makes you feel introspective. Not only that it has made my world smaller.

At the beginning of treatment it was exciting and scary to track the effects of these powerful pharmaceuticals rushing about my body. Lots to write about and to say about my experiences. As it has become more routine – and less scary, I have settled into a familiar set of side-effects and limitations and got on with my part-time job, blogging and injecting myself every Monday. Routine – and lots less to write about and to say.

Over the past few days I can sense me becoming less and less positive, and more and more fed up with it all. Maybe I need a holiday – often I do feel like this in the run up to a break.

But yesterday I felt fed up with the little routines and little world. I didn’t even turn on the computer yesterday. Not much interest in blogging or in what is going on. It only reminds me of HepC and treatment.

I want my life back, I thought. What life? Before HepC? That was decades ago. Before treatment? That feels like decades ago too. Realising that I can’t have my life ‘back’, I can only make what I can of what faces me in the future, I know HepC will continue to be a part of it – clear of the virus or not.

Cutting the lawn and getting out my watercolours (untouched since my trip to Spain in October) to do a ‘quick’ picture occupied most of the day. And my yoga class – I stayed the course this week (not walking out like I did last week). So achievements to celebrate, everyday life – back to normal? NO.

Despite a better night’s sleep behind me, I haven’t felt very interested in much today – but have done another painting. Funny, it looks flat and lifeless.

Irritable, unsettled, unfocused – I have them all today.

I am posting this as it is how I feel. However, I dread the notion that people will leave comments trying to cheer me up or encourage me on. I am ok – there’s a lot more strength and determination in me yet.

I am off to do injection #23 – but I don’t want to know how many are left to go. Good thing I don’t have marbles in a basket like Wendy – I would be throwing them through the windows.

This morning I was reading Jane’s Blog and responded with a comment to her recent posting:

I am trying to locate some counselling. The hospital can’t find me anyone. Nor my GP, it seems. Anyone in London have any suggestions?

As I was writing my ‘comment’ to post on her blog, I realised I have a lot to say on this topic! So I have reproduced my views here, as well as leaving them as a comment on Jane’s blog!

Hi Jane
I saw your query about counsellors – and hope this information is useful.

It is highly unlikely that you will find alot of counsellors with experience of working with clients with Hepatitis C!! It’s an area I am thinking of specialising in myself, once I have completed treatment – and put enough distance between me and the experience to be professional! My guess is that counsellors who work for drug projects (like Mainliners or the Blenheim Project) will have worked with HepC clients; that would mean approaching them as a ‘punter’ to access the service.

Although you might access some counselling services through your workplace (or their Employee Assistance Programme) I realise you have not made any disclosures there and wish to keep confidential in that forum. I should point out, however, as a Case Manager for an EAP myself I often have to reassure employees that any information or call to an EAP is completely confidential from the employers (they get only statistical info so they can see how the service is being used by their employees). But the services through an EAP will likely be for ’short term’ counselling – up to 6 or so sessions, whereas my guess would be that you would want or need more sessions than that. It may be worth checking what is available through them however!

To locate counsellors in private practice, there is a good ‘Find A Therapist’ section on the BACP website (British Association for Counselling & Psychotherapy). You can see details of counsellors in an area by entering your postcode or town name. All these counsellors will operate within the BACP Code of Ethics (also viewable on the website) and the website info will include their qualifications and fee rates.

There may also be low-cost/no-cost counselling services available through local voluntary organisations – depending on how well served your local community is! I am thinking of Women’s Centres, etc.

Looking at all this, you can see why I think is essential that hepatology centres (like the one we attend) in the NHS should have counselling services available for patients. You can see how it would not only help people prepare for treatment but also support them through to a more successful outcome (particularly where people feel overwhelmed with it all and this becomes a factor in stopping the treatment or undermines a good outcome through depression, etc).

A comment separate to the issue of finding counselling services; hospitals could boost their statistics for successful outcomes and likely save money on the cost of drugs and services (eg for patients who ’stop’ treatment as they cannot cope with the emotional roller-coaster) by providing counselling for patients on treatment.

We all know and hear, it isn’t just coping with the medical side of this treatment that is important, it’s also important how we cope emotionally with it. It is commonly and traditionally acknowledged that the liver is the ’seat’ of anger – and that people with HepC often are ‘angry’ or ‘liverish’ (as my Carol so adroitly puts it). How ironic that the drugs for HepC treatment are particularly known for producing side-effects of ‘irritability’ (riba-rage)! There is a lot of ‘emotion’ to cope with on treatment but not a lot to help or support patients in coping with their very personal and individual responses to it. (A clinic nurse with 50 patients or more can only humanly provide so much support to each one!)

My answer to your question has gone beyond being a ‘comment’ – it has now become a detailed ‘post’. So I will put this on my blog too – as you can hear I think it’s an important issue and I feel strongly about it!

Just a quick blog as I have just arrived home from The Hepatitis C Trust. An interesting and fun experience doing the web chat! Two hours went by very quickly. I don’t think they were intended to be, but I had some difficult questions. “Can MRSA be spread through blood products?” “What is the best source of information about HepC?” The full chat can be read tomorrow on The Hepatitis C Trust website (see their home page).

Catherine and Jane, from the Trust, ‘hosted’ my visit and took good care of me. Jane phoned several places, including the ‘manufacturers’ of blood products, to find the answer about MRSA and blood while I typed away the answers to other questions. Other than a small glitch at the beginning (we couldn’t log me on!) the whole thing went well. Meanwhile Catherine supplied some delicious biscuits of which I managed to eat (only) two! So thank you Catherine and Jane.

And thanks Martin and Nick for joining in – the blogging community is getting strong here!! And I hope it was helpful for others who have been more recently diagnosed and trying to sort out the implications for themselves and their lives!

Time to go off to do injection #22 and have a bit of a relax.