Living Without HepC

For the past few days I have been reading the blogs and the Forum but not really getting around to writing anything much myself. I’ve been leaving emails unanswered. And letting other everyday matters slide (such as filling in my passport renewal application, etc).

Carol and I enjoyed a lazy Sunday having lunch in the garden and lying in the sun. We then went on a ‘city walk’ exploring Little Venice and the Paddington Basin. I took the digital camera Ben gave us and took photos. I’ve posted these up at Flickr.com in their own special set. An enjoyable day.

Yesterday I did very little and Carol observed how ‘introspective’ I seemed. Useful feedback. I do feel my world has not only got smaller during this treatment but I am aware of not being very interested, or motivated, in my usual way, in what’s going on around me in the world. I know I’m dealing with the London bombings by not paying much attention to it – the feelings get very strong, very quickly. Both the sadness and the anger. And I felt wistful several times yesterday without thinking about anything as momentous as this issue.

As I prepared my weekly injection, I noticed a thought flitting into my head “I do not want to inject more of these strong drugs into me”. I dismissed it and carried on with injection 36. It made me think about others on treatment who have had such a difficult time at certain times, hating the drugs and feeling trapped inside treatment.

It was the first time I had such a thought and made me recognise my current feelings. I am getting weary of this process. I have recently felt very aware of feeling “reduced” and thought I can cope with this. When I say reduced, I mean feeling I am losing my ‘brain’ to the ‘fog’ all the time, not working much, not having much money, being tired and breathless all the time. And not getting on with interesting things. I feel my world has got smaller as I have reduced the stress in my life. I have cocooned myself in a protective lifestyle but it is getting tedious.

However I also remember that others on this treatment who have felt similarly have stuck with it and gone through it. I can locate within myself a determination to carry on also. I can remember the commitment with which I began this process – and the determination to face the side-effects and to embrace the changes that treatment would require. And there are only 12 more injections to go until the 48 weeks is complete.

I have already planned to be away in Spain and Morocco during the last 3 weeks, so I have only the next 9 weeks before then.

Today has been another day – and it has proved to be a different one. The sunshine has been great today. I am looking forward to receiving my Reiki 2nd Degree attunements this weekend and making preparations for this. I’ve looked again at my emails – two of the unanswered emails are invitations to do another Live Web Chat at the Hepatitis C Trust and to speak about my views on HepC at a health care conference. I can find my enthusiasm again and my interest in what’s going on out there. And I did manage to get my passport photo done so I’ve made a start on that passport renewal.

As I mentioned in yesterday’s blog I have been asked to do another ‘Live Chat’ at the Hepatitis C Trust. Will post up more information on that when I have discussed dates and arrrangements with the staff there.

In the meantime, there are two other ‘Live Chats’ which have been organised by the Trust on Traditional Chinese Medicine and Benefits Advice. The Trust website also has transcripts of previous ‘live chats’ with Consultant Hepatologist Professor Graham Foster, HepC Specialist Nurse Yvonne Dawes and John Tindall.

Details of the two ‘Live Chats’ coming up soon:

John Tindall – Sunday 17th July from 6pm till 8pm on Traditional Chinese Medicine
Elaine – Friday 22nd July from 10am till 12pm on Benefits Advice

For information on ‘Live Chat’s and how to ask a question click here
If you have registered and would like to post a question before Sunday click here

The Hepatitis C Trust website also contains a wealth of information about different aspects of living with Hepatitis C. So it’s useful source of information generally – and their Helpline can give you advice and information specifically about your own situation. I recommend it as a site to visit.

We’ve had a number of emails and telephone messages checking that we are safe. And we are.

Ben called very quickly after 9 am when he picked up news of a power surge and became concerned it was a terrorist attack, as he wrote in his blog. He was at home as he hadn’t yet started for work. We rang Phil who was on his way to the tube station and he returned home. We were relieved to hear that Sofia was safe. She was in the Central Line tunnel near Liverpool Street station when it happened, but fortunately that was not the tube line the incident occurred on.

We then checked events as they unfolded on the news channels. I couldn’t leave it alone all morning even though the news was slow to emerge and became repetitive. I think it must have been a shock reaction which millions have us experienced in response to events.

I am getting used to my heightened emotional responses these days, so my tears of sadness for the pain and suffering inflicted on individuals and families through death and injury did not surprise me this time. I let the feelings flow as I watched the scenes of destruction. What did startle me was the growing feelings of vulnerability and apprehension I felt as the morning went on. This hatred and violence aimed at ordinary people on the street is frightening.

Carol pointed out that I have a massive attack going on inside me regularly and today there was a massive attack taking place outside me too. The reverberations felt overwhelming and immobilising. I didn’t feel safe.

When I later went out in the car I felt very nervous and made sure I was driving very carefully and safely. During my journey I saw a man dart through the traffic to cross the road and almost get hit by an oncoming truck. As I saw the truck approach I was already expecting to see the man struck down in the street. Both driver and pedestrian shrugged off the non-incident and went about their business. I was left contemplating how I was prepared for more disaster.

At work, calls for counselling help were non-existent – the fewest calls I have seen on any day I have worked there. We are guessing that people are still in shock generally and that we will see an increase for requests over the next few days as people struggle to cope with the impact.

On a less sombre note, there was an excellent article in the Sun newspaper today on Hepatitis C featuring interviews with Gemma, Neil, Liana, Nick and Nimrod (whom I don’t personally know). The article was balanced and informative – free of the sleaze stigma that we see in other media reports.

And I look forward to reading news coverage of the FaceIt Campaign exhibition in Nottingham. Having my photo portrait 9 feet tall displayed there doesn’t phase me this time around, following my experience in Leicester Square earlier in the year.

Nick has written about this day in his blog - it sounds like a successful event that went well. It attracted a good amount of media interest – press, radio and TV. A positive result for Hepatitis C Awareness.

Nick has kindly agreed I can reproduce one of his photos fo the Exhibition in Old Market Square.

Amidst everything else this week, I realise I haven’t posted up information about the next exhitibition for the NHS Hepatitis C Awareness Campaign.

The photo exhibition launched in Leicester Square in March travels to Nottingham this week – in fact it’s in Market Square on Thursday and Friday this week.

Nick Green, Liana* and Michele Martinoli will be there to meet the Press and visitors to the exhibition. There has been some coverage on BBC already and the Sun are apparently running a feature story tomorrow.

Nick has written up his experience with the BBC on his blog

We look forward to seeing the press coverage!