Living Without HepC

Have been checking the Forum to see how its going. I am delighted to see new members continue to join and the feedback suggests people are finding it a useful and positive place to exchange views and information. Muy bueno.

I have realised how I exhausted and depleted I was feeling before this break - it has taken a week before I feel we are beginning to relax and unwind. Enjoying the sun, the light and laid-back pace. And seeing family for gatherings, meals and visits.

I.ve noticed how it has taken me awhile to acclimatize to the different weather, change in meal times (we are often eating lunch at 3 or 4 pm, dinner at 9 or 10 pm) and going to bed later. My body ´thermostat´ had difficulty at first catching up with whether I was feeling too hot or cool, etc. but this has now settled. I also took 2 paracetomol before bed last night and slept more soundly. I usually do at home but thought I would take a break from routine. Useful lesson - the paracetomol does help settle the riba hum at night. Did my injection last evening with no problems. But I can´t recall just now what number this is.

Of course I have been enjoying the Spanish equivalent of Danish pastries - el caracola, with coffee in the morning sunshine. And now that I´ve read the discussion about coffee on the Forum I have sometimes even had two in one day as they make such good coffee everywhere here.

Will be catching up on emails and making comments on the Forum when I return.

Over recent weeks I have been receiving queries and questions on this blog about Hepatitis C - sometimes outside my own experience or knowledge of HepC - and often answered by other readers of this blog. Creative conversations between readers are developing.

So, I realised it’s a natural progression to create a Discussion Forum where general queries and questions can be aired and discussed at large. It has been set up and tested recently by a few volunteers - and seems to be working well. My son Ben has kindly helped me (this means he has done the technical work!) and has created a ‘matching’ Forum site with the same colours and ‘feel’ as this blog.

There is a hyperlink button at the top of the sidebar (to the left of this column of text) which provides quick access to the Forum.

Anyone can read the Forum posts by going to the site and clicking on the discussion thread title. However, you will need to register to leave questions or make comments on the Forum. On first visiting the Forum, you will see on the banner at the top of the page a list of (self-explanatory) functions - Register | FAQ | Search | Memberlist | Usergroups | Log in. Use the Register button to choose a name or nickname that will identify you uniquely and to provide whatever optional information you want other readers to see, such as your website address, genotype, etc. You will also be asked to agree to a few standard and basic rules which should not be difficult to consent to. Then Log in and use the Forum!

There are a few discussion threads already up and running - and some waiting for input. Feel free to add discussion points or introduce new topics.

The partner of one tester has written to ask if carers can join in too. Yes, of course. Anyone (who abides by the few rules) is welcome to use the Forum. If there are specific or specialist discussions developing (ie “Carers and Partners of People with HepC”) then I will create specific or specialist headings for those interests.

An interesting article about HepC has been published on the This is London website today. “MP’s Demand Hepatitis C Action” says

The All-Party Parliamentary Group (APPG) on Hepatology called for greater urgency in dealing with “the coming tidal wave of hepatitis C” in the UK. They said the action plan had set no targets and the awareness campaign had been very low key.

The MPs’ report - The Hepatitis C Scandal - calls for greater investment from the Government to deal with the virus and a proactive screening programme to target at-risk groups.

I want to surf off and find this report - and will do so, but today it will remain on the list of ‘things to do which will wait for another day’. But it heartening to know someone within parliament is asking questions and doing a bit of awareness campaigning too!

And another item of news - The Hepatitis C Trust are running another internet ‘Live Chat’. Following the recent ‘Live Chat’ with Professor Graham Foster, the guest this time will be Yvonne Dawes, a Hepatitis C nurse specialist at the Royal Surrey County Hospital in Guildford. So this presents the opportunity to chat with a nurse specialist and ask those questions about Hepatitis C! Mark the date in your calendar - 23 March from 2-4 pm. Check out The Hepatitis C Trust website for instructions on how to take part in the discussion forum.

(I have been asked if I will participate in next month’s “Live Chat” at the Trust (more about that soon!)

I am feeling a bit ‘the day after my injection’ today - slowed down and not feeling like pushing myself to do the various sundry things that need doing. But there isn’t anything that won’t wait till another day! So whatever I get done will be because it doesn’t require me ‘pushing myself’.

I’m aware I don’t have a list of side-effects to discuss these days - like I did in the first few weeks of treatment. I suppose it goes with the process - I have now settled into coping within the limitations of the side-effects, and my disease, and just get on with it day by day. I take it for granted that I am breathless, slowed down on days like these and occasionally ‘foggy’ in the brain.

I may even have ideas that I am coping with all this now I have been on treatment for a while - until I face the occasional reminder. This morning Carol and I picked up a new lawn mower from a local shop - and brought the box home on a little ‘trolley’. Wheeling this up the street was more than I could manage with my breathlessness - so Carol pulled it along. I felt like the man who allowed his wife to carry the heavy load. In this day of equality - why not? But it does bring it home to me - I can’t easily do jobs I used to do with no problems.

There are also the ‘liver spots’. I mentioned these some weeks ago, on 24th January. I notice the one on my chest has faded but new ones have cropped on my neck and behind my ear. I should mention these to Mynurse as they seem to be more active (and itchy) at the moment.

More interesting than my side-effects are the new HepC blogs I have been discovering this week. Steve has haemophilia and caught the virus through blood products. He too has suffered from tainted blood products which should not have been used on him. He started blogging in early March and writes about his recent experience of telling people at work about his HepC. I have set up a link to his site on the right hand side of this blog under Other Hepatitis C Weblogs.

Also new to the blogging community is Ijaz who was diagnosed in 2000 but only recently discovered his liver had deteriorated to the point he needs treatment. He has not yet on treatment and is waiting to hear a start date. I have also set up a link to his site on the right hand side of this blog under Other Hepatitis C Weblogs.

What is encouraging, and gratifying, is the trend of people deciding to ’speak out’ about having Hepatitis C and to talk about the treatment and living with HepC. The more this happens the more ‘normalised’ Hepatitis C will become - and the more obviously any stigma or discrimination will stand out! There are people using politics, campaigns and debate to bring about changes over Hepatitis C within our community. However, I am convinced that people who are prepared to be ‘out’, to talk about living with HepC and their experiences from it - and get on with their lives, are also going to be as effective in bringing about changes as the politicians, campaigners and debaters!

Too exhausted to write about today’s launch - will write about this interesting experience tomorrow! I’m off to bed - having been up since 6 am (a long day by anyone’s standards, let alone a poor HepC ’sufferrer’)