Week 40: Wednesday
According to my calculations, I have 8 more injections to go. Not sure I want to keep flagging this up as a headline each week. I find I am thinking about coming to the end of this treatment with some ambivalence. Yes, it has been tough – and ‘harsh’ (to use the word employed in the debates in Parliament to describe hepC treatment). But it has also been a significant life experience for me and I want to ensure I am just free of the virus and the side-effects but not the positive experiences and relationships I have gained over the period of treatment.
Already people are asking me what I will do when I finish treatment. It has been a tight year for us financially because I stopped my usual work to make a ‘stress-free space’ to do the treatment. So I will need to think about the financial realities of life at some point too. (No, I’m not going to take on ads on my blog to earn some income!) However, it is too early to address this issue but it’s there on the ‘back burner’.
I will continue to blog through the post-treatment period. It seems there a variety of different experiences of what it is like through this period. So far, not a lot of this has been documented for others to read. And I believe people want to read about HepC post-treatment experiences as much as they want to know what treatment is like.
I was thinking about this yesterday when I met Jane for coffee in Central London. She had just taken her last ribs and been to the hospital for her end of treatment blood tests. It was a pleasure to meet Jane and talk about our experiences. Meeting people you already have a ‘virtual relationship’ with is a bit odd – like needing to catch up ‘face to face’ with where you are in the cyber world. But we touched on a lot of areas in our chat about HepC treatment and its impact on our lives. I really enjoyed our conversation and could have gone on talking but I realised I was running late.
The LiveChat at The Hepatitis C Trust was due to start at 2 and I got myself lost around London Bridge (again) and was late. Catherine, Charles, Sam and Adam were very welcoming and we set about the LiveChat immediately. It was good to chat with people and the discussions were lively … a bit of banter and a bit of serious too. I enjoyed it and ended up staying on an hour longer than planned. We did experience a technical hitch part way through because the Trust’s computers went offline, but the others online were able to keep chatting in the meantime.
It was good to touch base with people at the Trust. I always feel very relaxed and easy there – knowing I don’t have to ‘mind’ my brain-fog or other symptoms showing because everyone there knows immediately what it’s about and what it’s like.
* * * * *
I wrote those few paragraphs yesterday over a four hour period. It was ‘one of those days’ for me yesterday (post injection). Woolly-headed, couldn’t concentrate or focus on anything for long. Easily distracted by the door-bell, telephone or anything; couldn’t anticipate what I needed to do next; unable to collect my wits. Very odd experience – and when it happens, it seems to go on for the whole day. Then another day, like today – it’s gone. I certainly won’t miss those type of days, come the end of treatment.
While I’ve got my wits about me today I am anticipating and organising myself for our trip to Brighton on Friday. Looking forward to it. Not only the Exhibition but also the chance of a break from routine at the moment. And a chance to enjoy some of the sunny weather which has been widely forecast for the weekend.
The FaceIt Exhibition will be at the Churchill Square Shopping Centre in the centre of Brighton - on the external Piazza of the Churchill Square shopping centre, opposite BHS and in front of the Madison’s Coffee Shop. The Exhibition will be there on Friday and Saturday August 12 & 13 during opening hours.
One of the things I have got organised – taking my camera. So I will no doubt post up some photos of the event. In the meantime here is a mock up of it.
August 10th, 2005 at 7:01 pm
Hi Ron, this is where we cross paths, you have 8 to go and I’ve done 8! Great that you’ll continue to blog post treatment. Thanks in advance.
Regards, Jayne
August 11th, 2005 at 2:09 am
Ron, Yes I seem to be the lone soldier slogging my way through recovery without any input or information from others. Like Paul (overcomer) told me, people who recover and do well just go on their way, so people like me with long recoveries are left to fend for themselves. I’m not predicting it will be bad for you at all. I’m just happy that you are going to extend yourself further post treatment. Thanks for the good work so far and for the live chat. I was there bright and early (6am for me)
Nadine
August 12th, 2005 at 3:26 am
Hey Ron,
I too had Hep C. In fact I just “talked” about my own experience on my blog. Those first days were hell…but, just want to encourage you from one who has been on “the other side” and negative for over 5 years. When I started feeling better…I don’t think I’ve ever enjoyed it or appreciated it more.
August 12th, 2005 at 10:21 am
Hi Ron
You express such similar thoughts to my own. Yes the feelings of ambivalence over ending treatment are something I anticipated. I am so glad that you have gained such a lot of positive stuff over this period. Personally I have felt so much better being part of this community as I had always been totally isolated from others with HepC. I hope to come to see John Tindall later in the year, so maybe this will give me an opportunity to meet some people face to face. Still don’t know when the Face it campaign will make it up north. I’m looking forward to seeing some of your photos from the event in Brighton.
I am sending wishes of strength and peace to you for these last few weeks
Lu
August 13th, 2005 at 11:34 pm
Hi Ron,
I am so glad that you will continue to blog post tx.
Obviously when weighing up all the pros and cons pre tx, what I wanted to hear was, that not only did I have a chance of clearing the virus, but that all the symptoms I was experiencing would, or even might, improve. Only this was difficult information to find and answers were very vague from the medics, and as we already know, many believe hep c is asymptomatic, including my GP.
To hear that others have cleared the virus and actually feel their quality of life is better post tx will encourage others who may be wavering to go ahead and get treated.
I am so grateful to yourself and other bloggers for sharing their experiences, and the forum is a godsend, thank you so much.
Miss Poppy