Living Without HepC

Day before yesterday, MyNurse rang again and said the virologist has now looked at my blood test results. I am now officially HCV UNDETECTABLE at 6 months post-treatment.

It has taken a little while for this to sink in. I was initially sad about the ending of my relationship with MyNurse – it somehow felt a little distant and cool, not like it was during my time on treatment. As she told me (and Wendy Meister too) that she is looking for another job and can’t find one at the moment – as well as having to be interviewed by hospital managers to stay in the job she already has, I suspect her morale is not high at the moment. Only sorry this seems to have crept in at the end of our relationship which, as I say, always used to be very good. She was very supportive and cheered me on a number of times when I needed it.

And the statement there is a 3% chance the virus will return being sent in that letter to my GP kept echoing about it my mind. I felt like the prospect of this bloody virus would still be hanging over my head – will I never be free of it?

However I have at last arrived at the place where I can feel like celebrating what I achieved – SVR. I have just opened a bottle of rioja and will raise a very small glass just this once (with lots of water to wash it through) this evening with Carol to celebrate. (note later: after 3 or 4 sips I didn’t want anymore – disappointed to say I have lost my taste and interest in drinking – I really had thought I would enjoy some wine)

I feel very fortunate. I am aware of a number of people whose treatment has not worked and continue to struggle with the virus and sometimes the aftermath of the tx too. I also meet and hear about people who have a lot of illness and debility caused by HepC. I admire their strength and courage as they continue to cope so well day by day.

Genotype 1 and the 48 week treatment is no “walk in the park”. But it can be done and the virus eradicated. Looking back, I realise now that instinctively I was working on an integrated approach of mind, body and spirit to get me through this treatment and achieve SVR.

To me that has meant:

• Being as physically well and fit as possible before starting
• Nourishing myself with a diet that causes no damage to my liver and minimises demands and stress on it
• De-stressing as much of life generally as possible
• Finding inside myself a positive psychological attitude towards treatment and the combination therapy
• Making a ‘treatment contract’ – to accept and embrace the medication and surrender to it’s power. It can kill virus, I can’t. Fighting it won’t help the cause.
• Building an attitude of willingness to working and healing alongside the medication
• Viewing the side-effects as part of the ‘treatment contract’ between me and the medication – it kills virus for me and I tolerate it’s side-effects
• Developing a willingness to change – after all how can I give up a serious illness if I’m not prepared to change anything?
• Being committed to myself and my treatment – being prepared 100% to do whatever it takes to complete the treatment
• Being open to healing energies and spiritual experiences – a new and rich occurrence for me
• Recognising whatever there is to celebrate today
• Being kind to myself and taking care of myself because there is a war going on inside me
• Committing myself to healing and a belief that my body can be healed

Also very important to me achieving completion of the treatment and SVR has been my support network. My partner Carol has devoted 48 weeks of her life to my treatment and been on treatment too with me. As well as all the practical support she has provided emotional and spiritual support too. And frequent massages that helped shift and remove the powerful toxins left by the medications as well as reiki healing. I often think I couldn’t have done this well without her and it’s hard to say thank you enough to her.

I have also had the support of a therapist throughout helping me to maintain some semblance of balance through the roller coaster ride of emotional times. And the support of good work colleagues in my workplace helping me to keep myself in the working world and within everyday life routines.

I wasn’t going to write something that sounds like an acceptance speech at an awards ceremony and I hope this doesn’t read that way. I did want to try though to sum up somehow the things I found important. So that someone reading this and contemplating treatment for themselves might find some useful hints on preparation for their treatment journey. And inspiration to make it a successful one too.

So the expression goes – and one I keep reading on the Forum as people count off their way to the ending of treatment, till PCR and SVR. Well, it’s proving to have a meaning in my case too – different than I had anticipated.

On 3 April I had my blood taken for my 6 month end of treatment final appointment at my HepC Clinic. Yesss! Eight phials for various tests including the all-important PCR to establish whether the virus continues to be undetectable in my blood stream (as it has since Week 12 of treatment).

Soon it would be all over – April 12, last tests, last clinic app’t. Good-bye to Mynurse. Little present to say thank you for the help and support during treatment.

Mynurse suggested I telephone on 12 April to make sure the test results were back before coming in for my appointment. When I rang that morning she said she needed to see me – a reply which left me puzzled, a bit concerned then convinced, as I travelled to the hospital, that all was not well. By the time I arrived I had prepared myself for the worst – that the virus had returned. No, the test had come back negative – but had been diluted.

The Virology Report states: “HCV RNA has been diluted 1:2 Due to insufficient sample volume this specimen had to be diluted, which may give an inaccurate result.” Eight phials of blood taken but insufficient had arrived for this important test! The rest of the blood results are fine – back to normal ranges for ALT’s, Hb neutrophils, etc. Thyroid function is normal.

So back to the phlebotomist for another session. With my encouragement they took 2 phials of blood this time for the HCV RNA.

Mynurse suggested rather than book another hospital appointment she would tell me the outcome of the test over the telephone a week later – provided I proved that Carol was standing by in case it was a bad result. It is not her normal practice to give such results over the telephone and I think she was prepared to make an exception as she was confident about the outcome. Then it transpired she would be on holiday the following week, necessitating a further wait till yesterday. When I rang she hadn’t heard back from the lab and said she would ring me at 1:30. I arranged with Carol to be standing by then.

At 12:30, as I was leaving Marks & Spencer, Mynurse rang to say she had been in touch with the lab and the virus is undetectable – but the Virologist has not seen the specimens in that batch and signed them off. The lab is very busy and has no idea when this will happen. So it’s not official. I can call back next week and see if a report has been sent by the lab, but no promises. No, I can’t have a copy or a copy of the letter which will go to my GP – it is difficult for Mynurse to produce copies and send them to patients.

I did ask what would be sent to my GP – a letter stating that I have tested positive for HCV anti-bodies and tested negative on the HCV RNA. And a statement there is a 3% chance the virus will return.

So, is it over?? Doesn’t feel like it. Am I clear of the virus?? Sounds like unofficially yes, for the moment. But I should be aware, as will be my GP, that it may return. Should I celebrate? Well, not officially.

Not only is the fat lady not singing it feels like she’s still hiding in the wings.

Several weeks ago staff at The Hepatitis C Trust asked me to have a look at, and comment on, a survey they were developing on symptoms and experiences following combination therapy treatment.

I’m really pleased to see that they have now got the Post Treatment Survey up on their website, ready for people to complete online.

I am convinced that the medical profession and the pharmacetucial companies are not aware of the the sorts of experiences that people go through after completing the treatment. Certainly I was not prepared beforehand for the experience I went through. And it was only by sharing a little of it with others, and reading more on the Forum when others began to write about their experiences, that I realised it wasn’t just happening to me.

Of course, patients stop seeing their nurses at clinic when the treatment finishes – so nurses (and doctors) just don’t hear in detail about the various side effects and after effects that happen to patients. And the pharmaceutical literature says the medications clear from the body in a couple of weeks. That may be true but that’s not all there is to it though. Not everyone’s the same – there may be some who do just walk away from treatment free of any further effects. However there are loads of us who have struggled through this period. Sometimes for months and, in some cases, even longer.

At the moment all these experiences remain anecdotal – with some patients experiences being regarded, or disregarded, as a ‘one-off’ or a curiosity. By writing on our blogs and posting up comments on the Forums, though, we are building up a credible bank of information – that’s the power of the internet and people working together. Next step is to help develop a proper and authentic knowledge base about the Post Treatment experience. This will benefit other patients, the medical profession and lead to better post treatment hospital care. The Hepatitis C Trust are taking this step – developing and publishing a survey.

This particular survey focuses on the physical effects. There can be emotional and psychological effects too. Personally I found these more difficult and distressing than the phsycial ones. Staff at the Trust have reassured me they will be tackling these aspects too in future surveys. (Perhaps they should have labelled this survey Part One!)

The survey is on their site now, however. Do go and visit and fill it in

Carol and I went to the annual conference of the National Hepatitis C Network this past weekend. The conference was organised by Janie and Gary McCann who founded HCV Alert, one of a number of Hepatitis C support organisations around the UK. Through their determination and hard work they established this conference last year for the purpose of bringing together HepC support organisations and groups around the country. And this was the second annual event.

There were about 20 of us plus speakers. Charles Gore, The Hepatitis C Trust, gave a presentation on awareness raising plans over the next year. Ed Gyde and Chris Duncan, Munro & Forster, reported on the activities of the Department of Health’s Face-It campaign over this past year and briefly outlined plans for the second year of the campaign. Janet Catt and Lynette Baldwin described their work with HepC patients at the Ipswich PCT.

It was really great to meet new people from around the country who are involved in supporting people with HepC and to see those we already know. The conference meeting was a long one but there was ample opportunity during the evening before and after to spend time relaxing and talking with other people.

Special for me was the opportunity to see Nick & Vicky and Martin & Carol again. Nick, Martin and I were the first HepC bloggers with genotype 1 to blog through treatment and have been involved over the past year and a half with the awareness campaign. Michele Martinoli took this picture of the six of us for our scrapbooks.

Click here to see more Conference pictures taken by Michele, me and Carol.

For me, the conference and the presentations raised issues about the need for services, the lack of funding, the necessity for awareness raising and politicking and the requirement for close co-ordination to achieve aims. I don’t really want to comment much more about all of that today – except to note that Munro & Forster have made the commitment to better utilise their existing HepC ambassadors in the planning and delivery of their awareness campaigns.

And to point out that Janet and Lynette are responsible for a clearly patient-focused HepC service that cares for and support patients through both flexible in-hospital and in-community services, aiming to meet individual needs. It’s not just a ‘one size fits all’ service that we hear about in so many hospitals. I hope their patients appreciate their commitment and caring and I hope fellow professionals listen to how they deliver their service and emulate their model.

Over the next year NHCN aims to become more active in moving the HepC agenda forward. One of the first items to be addressed is to identify and record in one directory HepC support groups and organisations throughout the UK.

So if you know about a HepC support group or organisation send me an email at ron(at)ronmetcalfe.com [of course remove the middle bit and replace with @] and I will pass the information on.