Week 21 - Monday (#2)
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.
April 4th, 2005 at 8:27 pm
Ron,
It is amazing to think you are doing shot number 22. I was trying to think how far ahead of me you were, I remember rfirst eading your blog about 3 weeks before I started treatment and I think it was about a week after that you got the bells palsy. It seems such a long time ago now.
I did drop in and read the web chat, seems like there were one or two new people there. I was particularly moved by the chap who hadn’t told anyone about having hep c apart from his health care providers, it must be incredibly lonely for him and makes me feel really lucky to have a wonderful supportive circle of friends.
Kick back and have a good rest, why not treat yourself to a Danish Pastry.
Cheers
Jonathan
Ron writes:
Hi Jonathan - it does seem like a long time since we started this (treatment and blogging1) - and I remember you were the next person to start a blog - making it feel much less ‘lonely’ to do - and now look at the community that’s developing!! Great eh?
I hope the guy who hasn’t told anyone about his HepC might have been left tempted to find a way to find support for himself!
Like you, I value the support of friends - and friends on the internet too! All the best
Ron
April 4th, 2005 at 9:19 pm
Hi Ron
I was so happy to read that some of your bloggers have the right idea about getting a web log set up for partners. So these partners can tell the whole world what is like living with a partner with Hep C/and on treatment. I sure we will have a hell of a drama and a greater insight into the world of the interferonnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnn.
I am glad you had a good day, keep up the goood work you have been doing. May be one day I will come out the closet. (smile)
Carol this one is for you I hope to see you log there
Ron writes:
Thanks for the suggestion Friend. I suspect carers will tell you they certainly don’t have time to sit around writing blogs - they have too much to do looking after, and putting up with, the partner on tx! Only those on tx have got the kind of time it takes to write a blog!
But I agree there has to be some way to better support carers - I’m thinking about it!! Watch this space…
We know you will come out of the closet one day - when you are ready!
All the best and thanks for your comments!
Ron
April 4th, 2005 at 11:19 pm
Well done with the discussion forum, Ron - as you said, very interesting. Your point about the blogging community is very valid, and just leads me on to something which I have probably said before (and am currently overlooking due to brain fog, which seems particularly challenging today), and which I know you and I have discussed. There are clearly many very capable and talented people around who are keen to play an active role in hep C awareness, both for sufferers and for the wider public (and for the medical profession!). It would be wonderful to see these abilities shared and used. The problem is, of course, organisation - especially as so many of us are either on or due to start treatment, and don’t want to take on any more than necessary.
However, could this be made manageable at a regional level - small groups developing specific ideas, or simply meeting to support one another? As this is just the budding seedling of an idea, I will think further about it and put something in my blog tomorrow. I just feel that there are many talents which due to Hep C are not being used to their full potential in a working capacity, but which can be harnessed as both a therapeutic and awareness raising tool.
Ron writes:
Hi Nick - thanks for the comments - I am going over to your blog to see what else you have to say - then comment - there are so many possibilities it is difficult to know what to prioritise!
Ron
April 4th, 2005 at 11:34 pm
Hi Ron,
Glad the chat went so well! Also glad to hear you’re feeling better today - interesting and fun experiences always make a day good! Hope #22 (wow!) goes well for you. Sue
Ron writes:
Hi Sue - thanks for the support as ever. Yes, the injections are getting to be quite routine - I was going to say a bit of a habit but that takes me to different territory. I realise I have stopped making any reference these days to not being an injecting drug user! If nothing else, I haven’t lost a slightly corny sense of huimour!
Take care & all the best
Ron
April 5th, 2005 at 2:28 am
Regarding Nick’s comments about talent not being used…. i was reminded by a comment made by John Mellencamp in a recent Vanity Fair in relation to the lack of antiwar songs in the current climate. He said that it’s time for the message to be greater than the fears of the messengers. I took it to read that we need to get up off our bums, overcome our personal fears and act for the greater good. In the case of HCV+ people this means getting past our fear of stigma , putting our names to your cause, and damn the torpedoes. Then what Nick suggests becomes more and more possible. This is not to say that good things aren’t already happening, far from it. Simply that so far this isn’t enough. If we want to mobilise forces, those forces have to sign up.
I know this sounds like pontificating crap……..but it is true.
All of you over there in the Old Dart keep it up. We can change the world.
Tom Pryce, Darwin Australia
April 6th, 2005 at 1:04 am
Glad to hear the day went well, having had the riba-rage myself. Thanks for the comments you left on my blog, too. These connections help.
Question to Tom Pryce: What is the Old Dart? All I can picture is a syringe filled with interferon…
April 6th, 2005 at 11:24 am
Hi Tom & Peter
Yes, I believe we can change the world - I have already changed my world quite alot since I have been diagnosed with HepC - so why wouldn’t that logically extend to other worlds too?
Peter - I confess I don’t know what the Old Dart is either - I am Canadian by origin so some cultural expressions pass me by. I had assumed it is like ‘old blighty’ - an expression used by Brits to decribe the ‘home country’ - again I have no idea where that expression comes from either!
Ron
April 7th, 2005 at 7:05 am
dear ron and peter. the old dart is an endearing term us expatriate pommies (people of mother england) use when referring to old blighty. so there!
by the way ron. I am in touch with michele margolini and so far it looks good. i hope to be using elements of “shadows” for our hep c awareness week. you can disregard my earlier email request.
thanks
hope all well
tom