Post Treatment: Week 1 – Sunday
I don’t know how long I will track my “Return to Health” post treatment phase with Week numbers – how will I know when to stop and declare myself healthy? I suppose forthcoming 3 month and 6 month viral load blood tests become the milestones.
Thinking about the past week and how I have coped, it is difficult to say that I feel any different than I did during treatment yet. As I write, I am aware of the constantly itchy skin around my eyes and the irritated and inflamed red blotches of skin on my face. I’ve had this for months and it still continues. I continue my twice daily ‘cleanse, tone and moisturise’ regime which I believe helps prevent my skin becoming too scaly or too itchy but which I really loathe doing.
Yesterday I did have a sense of triumph that I had managed to carry out a full day of ‘ordinary’ activity all day on Friday – without needing breaks, slowing down or a rest during the day. On the go from about 8 in the morning to 8 in the evening. It’s been a while since I could have managed this pace of activity.
I attended a Conference for Liver Nurse Specialists on Hepatitis C and gave a formal presentation during the day. I was aware that I was in friendly company however, and that 4 days “post-treatment” they weren’t likely to expect a patient to talk like they had all their wits about them. Just in case, I did start with the disclaimer that I am looking forward to the brain-fog clearing and the return of my wits, as I have spent most of the last year without them.
Despite regularly listening to people on treatment talk about their experience, this group of nurses was interested in hearing about my attitudes and holistic approach and how these had helped me to complete my journey through treatment - as well as hearing about counselling, complementary therapies and online support (blogging and the forum). Afterwards, several professionals told me they had been touched to hear my honest account of my experiences and how the journey has changed me – and that was rewarding feedback for me. It was also gratifying to be asked if I would be willing to talk to other groups of professionals about treatment services and support for people going through treatment.
As I listened to doctors presenting clinical research information on Hepatitis, transplants, treatment length, nurses talking about HCV services in various cities, prisons and ID (infectious Disease) centres, and Charles Gore from the Hepatitis C Trust talk about the comparison of awareness and services in the UK and through the rest of Europe, I felt fortunate to be in the company of people passionate about the issues of Hepatitis C and keen to move the HCV agenda forward both medically and politically.
As I said, I did have a period of feeling celebratory yesterday but it was short-lived when I faced how exhausted I was really. And that continues today. In order to prepare for the conference I had spent time in the previous few days trying to get my head together to organise what I would say in my presentation and considerable time worrying whether I could keep my head together on the day to deliver said presentation.
I am sure many people will recognise and understand when I say the preparation took a lot of hours in my slowed-down state to produce very little on paper, generated lots of mental agitation and worry that I could be too slowed-down or exhausted on the day to give my talk or even show up. Despite the difficulties I managed it so that must be a step forward on my “Return to Health”.
Off to Yoga now – not sure I can do a class or that I want to push myself too hard but again, time for another step forward to getting healthy.
October 19th, 2005 at 10:53 am
Hi Ron
Wow, well done for doing that presentation, I am seriously impressed you were able to get your brain into gear for such a task! Funny how the ups and downs continue, despite not taking the medication any more. Lots of people seem to have all sorts of different experiences of recovery - you sound like you’re taking the bull by the horns at the moment! Don’t be too hard on yourself tho - let yourself rest when you need to, because although it may not feel like it, that is also a step forward.
All the best
Lu
October 22nd, 2005 at 12:03 am
[…] The Godfather - UK […]
October 22nd, 2005 at 1:25 pm
Hello Ron, First let me congratulate you on completing 48 weeks of treatment. I logged onto your blogs for the first time last weekend. I am at week 27 of 48 and thus far have weathered tx well. However, I did reach a low point which is why I decided to search for a helpline although I must admit to feeling some ambivilance. I realized because I was making it more real and that I have been keeping my hep c/treatment secret and trying to carry on as normal. I had a sense of ‘meant to be’ when I logged on to your site because of some similarities. I too have always been a high energy person and work as a Counsellor and Social Worker. I am struggling with whether or not to tell my Managers and team colleagues. I supposeI fear the stigma, gossip. I know recently I seemed to have entered another wave of symtoms i.e. Fogging difficulty getting off or staying asleep at these times the soles of my feet burn (could this be a symtom? toxic build up!. I seel mynurse next week and will ask. I am also looking forward to getting my 6 month results back. I was encouraged by the news that at week one my viral load had dropped from 164 to an amazing 4 is that thousands? I digress and realize it feels good writing to someone who understands the lanaguage.
I wondered if you would share with me your experiences of telling colleagues and the reactions you recieved. In the fields in which we both work my rational self tells me that people will be understanding and supportive but feelings of shame stop me testing this out. I am a single parent and have not yet told my 13yr old daughter. She knows I attend Hospital appointments I have given vague reasons Anaemia!
I read with interest about your application to the GSCC, I must admit I didn’t declare Hep C, didn’t think I had to, probably didn’t read the full instructions. Did you have to Apeal?
Well Ron, Back to you I think it is fantastic that you decided to share your journey with others. Now that your heading further up the road less travelled I wish you all the very best for a speedy recovery and successful out-come. Loll uk
October 22nd, 2005 at 1:52 pm
Hello Ron, Me again since just posting a comment I am now panicking that my email address is being broadcast I am not really computer literate and the box said mail will not be published I thougt it was directly to you. Why are my details in the boxes? Lu and Hep C Boy’s are not! Loll uk
October 22nd, 2005 at 11:27 pm
Loll, hi. your details are in the box but no one else can see them. I am looking at my details and anyone else will see their own.
Its just a way for you to post again without retyping your info.
Bill Gates knows everything about you. I wouldn`t worry. He has our best interests at heart.
Paul.
October 22nd, 2005 at 11:35 pm
Loll, Hi again. Sorry about the Bill Gates comment. I can never resist it.
You have done amazingly well. I am in week 37 of 48 weeks and could not have worked in any responsible position. It is at this stage that treatment can bite. Your body is tired your bloods are down. You may need to slow up a bit.
Visit the forum. It is as anonymous as you want it to be.
You have done amazingly well. Give yourself some support.
paul.
October 23rd, 2005 at 10:49 am
Hello Paul, Thank you for responding and putting my mind at ease. Well done you too; week 37 says to me, three more weeks and you will be on the home straights - 11 reasons to be excited! Yes your right I do need to slow up and start looking after myself. I am taking next week off on annual leave. I am looking forward to laying in and generally pottering. I will visit the forum again, It’s helped already! Thanks Loll.
October 23rd, 2005 at 3:17 pm
Hi Loll & Paul
Thanks Paul for clarifying the point about email detials not being published.
Loll I tried to email you separately to reassure you your address is not published - but the email was returned to me as undeliverable - so even knowing your email address I couldn’t get through to you!! I guess that isn’t reassuring as I had intended.
Will write again separately about GSCC, etc but Paul’s usggestion about the Froum is also a good one - glad you have found it.
Ron
October 23rd, 2005 at 10:44 pm
Hi Ron, Thanks for your attempt to contact me via email, I don’t know why it was returned, I will check it out. Hope you have a good post week 3. Loll
October 24th, 2005 at 1:12 pm
p.s. Ron, I have checked recieving other emails o.k. this end. Loll