Post Treatment: Week 8
I’ve had a break from blogging for the past month or so. It wasn’t that I decided to take a break – more a case of just not publishing what I was writing. I can imagine people thinking the lack of recent posts meant that, now I’ve completed the treatment and cleared the virus, I am getting on with the rest of my life and far too busy with exciting things to be writing this blog or bothering with HepC. Well, that’s not the case, far from it.
In the last entry I wrote about having nagging thoughts about what I ought to be doing because I‘m not really ill any more. Soon after I found it too much to take on the sorts of things I thought I should be doing and felt somewhat defeated – and frustrated. Although I felt more alert and able to anticipate everyday events (which I had lost during tx) I couldn’t easily make the connection to ‘doing things’ – so I sat for long periods thinking about it all (as I had done on tx).
It then slowly, very slowly, dawned on me that I feel I’m in a “no man’s land” – PCR negative and no longer living within treatment but not yet feeling fit and healthy with SVR negative. This road to recovery used to be known as convalescence – a term not frequently used these days, out of fashion and favour. And that describes how I was feeling too.
Then sorry for myself. In the early days of treatment I can remember, whenever some new side-effect or other appeared, thinking to myself “I knew it would be a difficult trip and here’s another challenge – so make the best of it and learn how to live with the issue positively”. I kept thinking I have gone through a year’s treatment, rarely ever feeling sorry for myself or my circumstances. Grit and determination underpinned my commitment to eradicate this virus, help my liver. Now I don’t have the energy anymore and the virus has been eradicated – I don’t have the same focus.
Some days I did feel strong and positive – getting on with domestic and everyday life but the days when I felt gloomy became more frequent. During a discussion with Ben about developing The Forum and kicking around some ideas about its future he said he sensed I was feeling a little down about all this and called it post-treatment blues.
That really named how I was feeling. As well as frustrated and angry. It was all washing over and around me faster than I could metabolise. Everything so complicated. Just to trace one thread – finance, we have really been feeling the pinch over recent months (and living off our savings now) so I had envisaged being able to take up more work soon as possible after treatment. But I’ve lost all my previous work contacts over the past two years, can’t identify jobs I can realistically take on without leaving my part-time job first, and know that the Christmas period is the wrong time for job-search generally. All this leading to gloom, frustration and anger. Lots of areas in life feel as complicated and full of obstacles. Added to this I have felt very vulnerable and very unconfident taking on activities that I haven’t done for a long while.
One of many reasons I didn’t publish recently was a recurring thought that people not yet started treatment, or currently on it, could be put off by my revelations that it ain’t over after the treatment, and people have enough to cope with already. It took me some time to realise I was simultaneously frustrated and angry that I hadn’t known it would be tough afterwards – I hadn’t thought much about it, I was focusing on treatment and achieving that. Why didn’t anyone tell me post-treatment would be this tough for me? Maybe they tried and I couldn’t hear. But I am publishing today so anyone who wants to hear can be forewarned about the possibilities.
I have now come to believe recovering from the 48 week experience must be more difficult than 24 weeks of combo therapy. It makes sense as the residual build-up of those drugs must be greater and have stronger and longer lasting effect over twice the treatment period. (I guess that’s good in terms of treatment but tough when it also applies to the ‘side’ effects too.)
As I felt increasingly caught in the gloom and the blues I reached the point of thinking the unthinkable – I feel worse now than when I started the treatment. Several times I pushed this thought, and incumbent feelings, to the back of my mind dismissing it all as negative thinking. Eventually I took the risk of sharing all this and felt better for doing so.
I can create long lists elaborating how I am worse off in several areas of my life – physically, emotionally, socially, financially and professionally. And I can list the positives in one sentence – I am PCR negative at the moment and I now weigh the same as I did two decades ago (my pre-illness era).
When lots of other people have struggled on this treatment and not been successful, it feels very recalcitrant to complain about my lot in life when, after all, I have completed the treatment and got a negative PCR result at the end. It feels very ‘off’ that I can’t just focus on those positives and carry on with my life. I feel a lot like I should pull myself up by the boot straps and get on with it. Is that a message or expectation I hear from others (or our culture) or is it just in my head?
But acknowledging this has helped me to face there are post treatment issues for me to deal with and writing this has helped me remember grit and determination are still in my repertoire. I may be feeling the negatives outweigh the positives at the moment - that’s how I am feeling today. That could change.
December 12th, 2005 at 12:21 am
Ron:
Personally, I am extremely grateful that you shared the post-treatment issues. It helps prepare me — and my family — for what could come as the drugs take a while to exit the system. I am likely not alone.
You know, if you’re looking for some work, I think you should think about publishing your journey. As it stands, you already have the blog as background; you merely fill in the gaps and include some dialogue that you may recall. If I can offer any assistance, let me know. While I am not a professional book editor, I have been in journalism for 25 years … about 20-plus as an editor of some sort or another.
Grace and peace …
December 12th, 2005 at 1:27 am
Hi Ron - hope you’re feeling ok. I hope what you’re experiencing is basically a short term loss of confidence, which you will regain as you get back into work again. Certainly, after a lengthy break from work, I have found this a real problem - the sensitivity of colleagues has been appreciated. I suppose you could look at it a chance to be working at full output in the future - after 25 years with the virus and a year on tx! So in time, you might feel confident of becoming an even more able worker than previously.
Keep hanging in there - who knows, all your exceptional work for Hep C awareness might be rewarded - it deserves to be!!
December 12th, 2005 at 10:23 am
I was thinking of you last night, Ron. And logged in now specifically to leave a comment asking how you were. So I’m glad to read your post. But sorry you’ve been feeling so down.
I agree - from everything I’ve read, including blogs etc - 24 weeks seems to be substantially easier to recover from than 48 weeks.
I was also thinking of that post-exam feeling. Do you remember that? After the exams I’ll do this…that….everything. Then when it comes to it, you just feel flat, nothing. Something to do with the effort expended in getting to that point.
Anxieties about work and money bring anyone down, even at the best of times. You know what it’s like as a freelancer, nothing is permanent. Everything is cyclical. The work will come back - probably too much of it when it comes. Hard to believe at the moment though, I’m sure.
And there is that odd loss of identity that you mention. No longer on TX, but not clear of the virus either - I too am there. But I deal with it by refusing to think about it. Your way is probably healthier in the long run.
Convalescence - yeah. A good concept, worth hanging on to. I think/hope it’s all part of the journey. The treatment takes a toll, no doubt about that. But I do believe that, eventually, we will break away from it’s shadow. It’s a matter of moving onwards one step at a time.
December 12th, 2005 at 7:38 pm
I think it’s good to hear that it’s not all over the minute treatment stops. I finish soon and I can tell from your posts and other peoples that you do not suddenly bounce back to who you were overnight.
I remember when I first started treatment, I felt so elated to be actively doing something towards getting rid off the virus. When the treatment stops, I think like you say it’s like a no mans land. your doing nothing to help fight, no meds anymore, just waiting. I’m dreading it but looking forward to not taking any more medicine.
We have felt the pinch with me going on a three day week and I’ve lost a few regular customers through it and have’nt had the energy to go and talk them back, can’t be bothered at the moment.
Sure we’ll all get there in the end. Best of luck.
Teddy
December 12th, 2005 at 7:50 pm
Hi Ron,
I am also glad that you have written about you post treatment experience so honestly. I am still struggling with the after affects of just 2 injections, so I can only imagine how you must feel. Just like tx itself, the after effects appear to be different from person to person, some people simply tolerate the meds better than others.
It is frustrating to find the journey back to health is longer than you anticipated, especially when you have already travelled a long and hard road.
My nurse told me 6 months to recover from 48 weeks treatment, I suppose this would indicate a gradual return to optimum health. It is better to know this than to expect a more rapid recovery and be disappointed and beating up on yourself.
Pulling yourself up by your bootstraps and getting on with it is a bit harsh Ron, you are very much still early days post tx. Be kind and gentle to yourself and allow yourself more time to heal and you will.
Good wishes
Miss Poppy
December 12th, 2005 at 9:00 pm
“Why didn’t anyone tell me post-treatment would be this tough for me? Maybe they tried and I couldn’t hear.”
Remember me Ron? She said weakly….
I think there were a number of people who tried to slam dunk me this past year for my honesty saying that I was the minority. The reality is too scary and troubling for so many. In my case it’s taken much longer than six months. I keep telling everyone I’m well now, that’s not the case. My limitations are still there. Like my doctor said the progress is weekly not daily. And the last months the progress has been miniscule every week. It’s coming but I’ve learned a lot about acceptance. By the time health really gets here I think I will appreciate it ever so much more. Wish we could be more honest without people becoming hostile. So until then I guess there will still be a lot of sugar coating, cause after all it’s only bad for a few people and those people are very vocal etc. etc. Too many people are charting and graphing the treatment experience based on their experience only. I think there are too many factors to figure in for that. I put my boots away so I don’t even have to think about the bootstrap thing. I’ve been where you are Ron, and you will be where I am eventually. You have a lot going for you. Everything will come.
nadine
December 13th, 2005 at 12:41 am
For very different reasons we have ended up on the same page post tx.
I should not be finishing tx till January 9th but here I am at 7 weeks post tx due to failed response at week 36.
I am very grateful that we have been able to help each other a lot through this no mans land stage and it is certainly weird comparing notes and finding such similar experiences.
You will no doubt identify well with the comments on my blog about Roche saying:
“If symptoms persist after 2 weeks see your doctor”.
Cruel and unjust to say that to someone who has just done 48 weeks of a very harsh treatment regime.
I prefer what my nurse said in a letter to someone who expected me to make a swift return to work after tx ended. I am sure she won’t mind me quoting her:
“After treatment ends it will probably take a minimum of six months before the chemicals that his body has been bombarded with will be cleared from his system”
Ravaged is how I felt just before treatment ended and in post treatment stage I am often in aftershock.
Yet, recovery is as irritatingly unpredictable as the treatment itself and some days I am clear headed, feel renewed strength and can see that one day I will be saying along with Tracey:
“Look out world here I come”.
Thanks for your honesty Ron. We aren`t going to get anywhere or help anyone by burying unpleasant truths under a load of British Banter.
The price for freedom (or even the chance of freedom) from the virus is high. Its not mission impossible but it is mission not easy – and even James Bond gets some R&R after a difficult time in the field.
Possibilities will open up at the right time, they always do.
Paul.
December 14th, 2005 at 4:00 am
Hi Ron,
Sorry to hear that your feeling like this. Its good to know the realities of post tx experience tho. Similar to Teddy, im due to finish soon and after 24 weeks of tx i feel ravaged and worn by the whole experience. Yes it has brought some good lessons but the uncertainty of what happens next is quite a difficult one. I cannot imagine how it feels after 48 weeks and have immense respect for your achievement!! I also believe that it must take a while to recover from the experience too.
I remember reading somewhere that it can take months to recover from a bout of flu…by those terms, how long does it take to recover from 48 weeks?…
Hope you are feeling better soon Ron.
xxx
December 16th, 2005 at 11:34 am
Hi Ron,
Very eloquently put. Recovery\convalescence can be much slower than some people might think. I think it is not only the drugs leaving our bodies but also our bodies dealing with whatever liver damage the virus did before we cleared the virus.
All the years of illness that we struggled with before treatment cannot just be shaken off in a few short weeks.However things do improve, as Nadine says week by week rather than day by day.
I am now 6 months post treatment and feel so much better than I did at 2 months. Still not back to full time work so consequently finances are tight but do feel that things are slowly getting better. I am sure they will for you too. I also remember feeling very flat and unexcited about being PCR undetectable, I think because I just did not feel “better”. I go next week for my 6 month results and am feeling confident that it will remain undetectable.
Things will improve slowly but surely for you.
Wishing you all the best for Xmas
Andy
December 19th, 2005 at 2:05 am
I can relate being a month off treatment. I am not sure what I feel but I think on an intellectual level it is a process not an event. There is this thought that keeps entering my reality “life is supposed to be fun also… not all drama.” I am not sure what the future holds and I realize my life has changed and I can’t go back to before…. I guess I am creating a new life and that is an unfolding creation . I hope you encourage that inner critic to move on. The financial impact of this all can also create fear we do not need during this healing time. What you need will come Ron.
Denise
December 20th, 2005 at 12:41 am
Hello Ron,
Thankyou so much for writng about your post treatment experience. I was “clear” after completing 24 weeks of treatment and felt cross that 3 months down the line I’m not back to my Superwoman existance. I never actually felt ill prior to trearment and only found out by accident that I was HepC positive. I managed to get some counselling, through my employer. I work for the local education authority and was fortunate to meet a very experienced counseller. She has helped me to move on by leaps and bounds. I think it should be a mandatory part of post treatment.
The other thing which I have found strange is that although I never knew I was ill I have now found that I am a lot less anxious than I was before tx and now I’m having to learn how to live as this new, more chilled out being. I’ve even become more assertive on good days. There are still days though when I feel the need to hide, so I do and don’t feel guilty. Best of luck and thanks again,
Lynne
January 2nd, 2006 at 6:31 pm
What a Fab! idea from Buzz. Publish your journey in a book. It’d be great to have a book like that at my bedside to dip into when I need for encouragement, reflection etc.
Food for thought and money in your pocket x