Living Without HepC

Just a quick note before I shoot off to work.

Following on my comment yesterday about individuals with HepC being effective in speaking out and bringing about change - I was delighted to receive an email from Nick Green just now in which he has complained to BBC news about the images used to portray articles about Hepatitis C.

He wrote:

I find the image offensive, and so do others within the Hep C community. This attitude leads to failure to diagnose and prejudice, which I have encountered in the past.

Please could the image be removed and replaced with something more positive - maybe from the publicity event held on 16 March in Leicester Square, … or something from your archive which does not do so much to detract from the public need to raise the profile and remove the stigma from this condition.

I have found this offensive and diametrically opposed to the public interest. Nick Green, UK

And they have replied:

….. I understand your concerns and have replaced the image in this article. Please be assured we will bear your comments in mind for future articles on the subject.

The BBC article can be seen here:
http://news.bbc.co.uk/1/hi/health/4369199.stm

Alright, it was an image in an article - but they listened and acted on it. Positive action of this kind by all of us does make a difference!! Who knows the potential we have to make a difference? Who knows how different we make it!!

And well done Nick!

Got to get off to work now..

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!

Another day - and another day of adventure on ‘the treatment’. After a good yoga workout yesterday and nine hours sleep I am feeling more like the ‘me on treatment’ I know.

When I woke Ben had arrived back from his conference in San Diego, stopping over with us before the last leg of his journey home - full of news about his adventure (before he drifted off to sleep watching the video of the F1 Gran Prix in Malaysia) . Good to see him.

I have just powered up the PC to say good morning to the blog, comments and emails.

And two more comments have been posted by Colette this morning - or rather two copies of the same comment.

She tells me she is ’stunned by the aggressive response’ I made to her ‘just for pointing out the truth about haemophiliacs’. She goes to demand that I tell her - Why are you responding so aggressively to me anyway? And she demands I “define who the ‘Anyone Else’ is other than (her)self”.

She states “By the way I note that in not one e mail have you sympathised with the large haemophilia patient group who are so ill with hep C!” and informs me “Do not be fooled by the governments promotion of combination therapy , lots of haemophiliacs have gone through it and found it failed.”

I have looked in my heart over this matter - I don’t consider I have been aggressive. However I have set a parameter about posting on this blog - and done so in a way that I intend to be assertive rather than aggressive. And I believe I have set this out clearly.

I experienced this morning’s challenges, again, as me being the focus of her anger about her issues with the government - that I have no sympathy for haemophiliacs and that I am being fooled into thinking the combination therapy works for haemophiliacs.

I am not unsympathetic to Collette’s plight. Someone sent me this link to the BBC news website, which tells her story. I think it was rough justice and I can understand it leaving her feeling angry and frustrated with the government.

I had a hard time with her comments on my blog because I experienced that anger focussed on me personally (several comments posted indicated other readers thought this too). That is what felt insensitive and divisive. And an inappropriate use of my blog.

If I were told my comments on someone else’s blog caused them distress, that they felt my anger with other parties was being focused on them and they experienced my comments as insensitive and divisive - I cannot imagine I would be back the next morning demanding to know why that person is being aggressive to me - and then dispensing more points about my situation!

Unfortunately, today’s comments from Collette have continued in that same vein. So I have decided that Collette is not welcome to post comments on this blog and her comments have been removed.

Today is one of my flagging days, I think. I have been awake for 6 hours and I am feeling like I ‘coming to’ only now. (I wrote that 3 hours ago and I am only now finsihing this short post!)

Carol gave me a massage in her treatment room this morning - choosing ‘invigorating’ and ‘energising’ essential oils and I think it has done the trick. As well as clearing the toxins and the knotted muscles!

I don’t know if it’s residual tiredness from a busy week or just an interferon and ribavirin ‘off day’. Having ‘forced’ myself to wake at 6 am on Monday and Wednesday I am still waking early each morning - although this morning I slept until 7:30 (despite deciding I could have a lie-in).

Looking at the comments and emails about my post yesterday I guess there is more I want to say yet, but I think I will leave that until tomorrow! I am too ‘low energy’ to think properly about it at the moment!!

As it is Sunday, Carol and I are about to set off to yoga class. I am feeling too ‘low energy’ to do this - but I suspect I will perk up a bit when I get there (pre-exercise resistance!). I am remembering last week’s class with the teacher advising me to take it easy across the crowded class!