Newspaper article

As promised, here is a copy of the article that went in the Shropshire Star newspaper today promoting my headshave.

I was disappointed because having specifically told the reporter the prime aim of my head shave is promoting health awareness, she doesn't really give any information about hepatitis C at all, not even a website address for further information.

I intend to write a letter to the paper this week to address this lack of information & at least give the Hep C Trust's website address & have asked Raquel at the Trust if she could maybe contact them & ask if they'd consider doing a post-event article to redress the lack of information?

I'm very interested to hear what anyone else thinks of the article, so please feel free to post a comment & I'll certainly be letting you know how the follow-up goes!!

Charity Head Shave

This is only a week away now & I am really looking forward to doing it although a little nervous about organising the event itself.

Fundraising total to date stands at £582 – £82 over target, so anything more that I raise from here on is a bonus. I cannot thank people enough for their generosity & for taking the time to learn about Hepatitis C. I have personally spoken to nearly everyone that has donated money & have given out leaflets & put up posters etc. So this event isn’t just about raising money, but more importantly, spreading the knowledge necessary to bring Hepatitis C into the public domain & hopefully under some sort of control.

What I find frightening, is that out of the 200 or so people that I’ve personally spoken to over these past few weeks, only 3 said that they knew something about it & their knowledge wasn’t totally accurate. At least 2 people told me that they had been vaccinated against the virus & were shocked when I told them that there isn’t one. And the classic, was one woman who said “I don’t’ have to worry ‘coz I always use a condom!”

The landlady & friends at the pub have been so helpful & supportive. Julie (landlady) has donated a couple of prizes so that I can do a raffle, which we are going to start tonight. I made up a poster & she also agreed to put up copies in the pub for me. She is also going to provide a bucket so that we can collect any last minute donations on the night. Dave (head barman) is not only going to do the dirty deed for me, but has kindly agreed to shave any gents hair for a charitable donation too! Darren & Rachel have been fantastic support, both with ideas & financially; not only have they sponsored me very generously, but Rachel has promised to help me fund nibbles on the night & has helped me think of ways to make the event more successful. And then there's Pauline & Kevin who again, have both sponsored me & supported me personally & Pauline will be bringing her video camera on the night so that we can get a video on YouTube & some pictures of the event. Thank you so very much guys – you’re wonderful!!

I can’t write this post without mentioning my work colleagues. Since I made the announcement in last month’s staff meeting, I have had a tremendous amount of support, through sponsorship, genuine interest & even being allowed to organise a lunchtime seminar for everyone. So a huge thank you to everyone at ESI Ltd – I couldn’t wish for a lovelier bunch of people to work with!

There are so many people to whom I should say thank you, but I just can't list you all, so I raise my glass (of water!) to each & every one of you for your kindness, compassion & generosity!

Raquel from the Hepatitis C Trust has done her part too. She managed to get me an interview on Radio Shropshire, which went out live on their breakfast show last Monday. It was a telephone interview with no preparation between the presenter & myself so I hadn’t got much idea as to the kind of questions I was going to be asked. However, the feedback I got from people who have heard it is that it went well, I came over as being confident & managed to put across a few important points. Some have told me that I am a natural & I must admit, I did enjoy it very much. I have always enjoyed being able to impart knowledge to people & am seriously thinking about trying to find myself a future role in raising health awareness. I managed to get the interview on cassette & with a lot of help from a friend (that’d be you Nick!) I might be able to post it on the net – will let you know if we manage to do it!

Raquel also managed to stir the interest of my local paper (Shropshire Star) & a reporter rang me last Thursday to get some more detail so that she could write an article & a photographer came & took a few snaps yesterday too. (I even managed to educate him & give him a leaflet to take away!!) The article may well be in today’s paper so I’m off out later to get a copy. If it is, I’ll scan it & post it here for everyone to read – just hope the reporter has taken down all the facts correctly, but if there are any discrepancies, I can always write a letter of clarification & get it published in a future edition.

More on this after the event so watch this space……………

My 12 week PCR

If I’m honest, I never really gave this much thought…….that is until after I’d actually had the test done.

A few days after I’d had the test, I read a post on the Hep C Forum which prompted me to look at the NICE guidelines for the treatment. It clearly states that if you are not undetectable at 12 weeks, then your treatment can be stopped.

This began to worry me ‘coz although I only had a low viral count to begin with, my 4 week PCR was a little disappointing, in that my log drop was only 0.69 when my nurse said she’d expected me to return an undetectable result at that stage & so, the chances of me returning an undetectable at 12 weeks was quite uncertain.

So what if I didn’t return an undetectable result at 12 weeks & they stopped my treatment? What would the future hold for me in terms of treatment for my arthritis? Most RA drugs are liver toxic & are not an option for me to take unless I clear this HCV. This set a moderate amount of panic in my brain…..the thought of having to argue & fight to continue treatment despite not having a 12 week undetectable result. And to make matters worse, instead of getting my results within 2 weeks, I had to wait 4 weeks as my nurse was going on holiday.

This panic lasted a good few weeks. I waited the required 2 weeks & couldn’t take the suspense any longer, so I rang the medical secretary. She was most unhelpful & obviously didn’t appreciate the seriousness of the potential consequences of this result. The consultant wasn’t available on that day (which was a Friday) & so, I requested that she make a note to speak to him about it the following Monday & ask him to return my call.

To cut a long story short, I never received that call & tried several times over that following week to get hold of the consultant, but he was always unavailable for whatever reason. And so, I ended up resigning myself to waiting the full 4 weeks for my result – I had no choice in the matter!

I was due to see my nurse at 16 weeks anyway & assumed that she would give me the result then. However, the day before that, whilst at work, I found a voicemail on my mobile……from my nurse. She congratulated me on “being clear” & said she looked forward to seeing me as arranged, the following day.

I had to listen to that message 3 times before it started to sink in. Then I started to cry & shake totally involuntarily. I’ve never reacted to anything like this before, it was totally alien to me, but the relief must have been more than I realised……I’M UNDETECTABLE!!!!!!!!

One of my colleagues noticed me crying & shaking & put her arm around me until I’d got it out of my system a little – thanks for that Emma, you were just what I needed at that time!!

Within less than an hour of that, I received 3 other pieces of news. One was that a friend had also had a 12 week undetectable – fantastic news & well done Angie! The second was that my pregnant daughter had found out she’s having a boy & that both mum & baby are well – that really brought home to me that I really will become a grandmother at Christmas! The third was that another friend, having completed treatment, has the virus back – what a blow for you Frankie, I’m so gutted for you!

I spoke to Angie & we congratulated each other & promised to get together for a celebratory cappuccino. I also spoke to my daughter to congratulate her & talk about plans for Callum (that’s what baby will be named!) However, I couldn’t face speaking to Frankie…….his news just brought the reality home to me, that although I’d returned a 12 week undetectable, that doesn’t mean to say I’ll reach an SVR & I just couldn’t deal with that at that time. So instead of speaking to him, I wrote a note for him on the forum & felt very guilty about being so selfish!

So there you have it – I’m officially UNDETECTABLE (at least for now)!!!!!!! J