Post Treatment: Week 5:…and I’m Working On It
The transition to the “new me” continues. Carol has pointed out I have recently said to several people that I have now finished treatment and will soon be back to my “old self” again. Wrong. My “old self” had HepC for decades and struggled with the effects of it. My “new self” is free of HepC. A change of mind-set is required and I am working on it.
I feel like I am experiencing the ghosts of treatment side-effects. Some days I have felt very tired and several other days I have experienced irritation and been quite grumpy. But with a difference to what I experienced on treatment. The other day I could feel I was getting agitated and irritable before I became overtly grumpy with whatever (the interruption to what I was doing, etc). On treatment I don’t remember being aware of feeling irritable beforehand – just suddenly erupting in an outburst, surprising me as much as the other person. And I don’t remember feeling agitated at any time throughout the whole experience of treatment. Now feeling tired doesn’t mean that absolute fatigue which meant just sitting or lying down, it means getting on with what I am doing more slowly or stopping for a few minutes rest.
These current experiences aren’t overwhelming me in the way they did before. On the medication I felt I was caught ‘inside treatment’, like being in a capsule and having to stay there. It feels now like these experiences come up and then they go away. I am not caught inside them in a ‘helpless’ sort of way. They do feel like ghosts rather than the ‘real thing’.
After an experience of feeling agitation, it occurred to me that I am agitated and frustrated with not being able to get on with life – get up to speed again. So my progress continues to be uneven with some days more fruitful than others.
It was exactly a year ago yesterday that I started the big and scary adventure of treatment.
Then I was focusing very clearly and solely on doing the treatment and getting through it. As I move through my current phase I am now focusing my thoughts on helping my liver to recover – from the treatment and the ravages of the virus. I am thinking what diet, exercise and activities will help move back to recovery. Haven’t yet defined all this – but I am thinking about it.
I find myself thinking about what it was like last year, compared to now. I should have a read of my blog entries from that time to see what has changed and what is different now. But there it is – “should”. That’s one way I get caught up in the ‘getting up to speed’ issue. The risk is I will become agitated again in the near future if I haven’t done this task already – I can hear the nagging thoughts, “after all, I’m not really ill any more”.
Actually I still feel anaemic – which makes sense as I have only stopped the meds 4 weeks ago. How will I know when I am no longer anaemic I wonder. I haven’t any hospital appointments now until January. No blood work scheduled. Perhaps it doesn’t matter when the anaemia improves or maybe it is so gradual I won’t really notice. On treatment this would have been monitored. Now it’s over to me to take responsibility for monitoring myself – as people do in the everyday world.
November 9th, 2005 at 6:46 am
“After all I am not really ill anymore.” Ah, the subtley of the nadgers. You have to admire their art.
They are right of course. You are not on treatment and according to the Roche literature on recovery, you should return to normal after 2 weeks of a 48 week treatment.
You are into week 4 and you are still whingeing about tiredness and hangover side effects. Pull yourself together Ron, think of your position. You of all people need to be an example to everybody.
Bite those pharmaceutical bullets you have been pumping into yourself.
As Del Boy (ever the compassionate one) would say, “You know it makes sense”.
Ron, dear fellow traveller, I begin to wonder whether we shouldn`t forget treatment, forget our treatment experience, forget the others who still have hepc, and just move on and get back to our “old selves” as quickly as possible.
Paul.
November 11th, 2005 at 3:02 pm
Hi Ron, I’ve just discovered your journal and what a great gift it is for those who follow us along this path. I too am at the one year post treatment stage and luckily managed to avoid the grumps. I can understand your frustration; it is difficult adjusting to a new way of life. A new life.
People like us, Ron, have faced mortality head on, looked it straight in the eyes, so there is no going back, no old self waiting to be reclaimed. There’s a wisdom that comes from this journey. You learn what is important, seperating it from a morass of trivia and true friends shine like beacons.
I still feel brutalised by the treatment and my whole system is slowly recovering. Still fatigued and my joints hurt but there are a lot more good days now. Laughter comes easily, my singing bothers the cats and I treasure every day.
Keep going my friend.
November 12th, 2005 at 11:33 pm
Have just caught up with blogs (having been absent with apathy and isolation) and was SO chuffed to hear your news….cannot imagine your voice of calm giving anyone else in your position any thing but cautionary words on not expecting too much of themselves at this strange stage of recovery…..so hope you will afford yourself the same gentle encouragement! Enjoy your newfound status, but give yourself as much time and compassion as you have always shown the rest of us to come to terms with a continuing journey of life post HVC, you have given us all so much, Ron…many thanks for all of it and best of all wishes to you and Carol and Ben in this amazing new phase and may you always continue to share it with us! With love, Jane1962
November 14th, 2005 at 6:07 pm
Hi Ron, I found your blog through the “Carnival of Compassion.” I don’t have Hepatitis C, but I do have a chronic illness that I’m now receiving treatment for. I wonder what life will be like if my surgery in February works. I wonder what it would be like to be “free” of the disease, and I’m scared that I won’t be able to get back to “life as normal.” Because my disease is invisible, I’ve had people tell me that I’m just lazy, it doesn’t hurt that much, just “deal with it!” Sometimes, I wonder if they are right, and I fear that after I have the surgery I will realize that. So, your blog entry really hit home to me because I know that sometime soon I might be in the same shoes as you are… recovering from a battle with a disease and wondering how to move on after it has been so devastating and painful. Hang in there, and like Jane said, give yourself time. You can’t recover overnight, and I don’t think anyone expects you to.
Sincerely,
Stacy
November 14th, 2005 at 9:10 pm
Congrats – I am on week36 – undetectable. Two questions – any suggestions on how to treat itchy rashes? Also, any suggestions for getting sleep? I have developed terrible insomnia. Thanks
November 14th, 2005 at 9:14 pm
I love a success story – keep up the good work of keeping us informed about life post tx
November 15th, 2005 at 12:14 am
Hi Ron, glad to hear your transition is going reasonably well, as you say a new self is emerging – would it be going too far to say – like a phoenix from the ashes? No insult intended of course, but I like that image. And thanks again for keeping us all posted with how things are and how you feel. Throughout my own treatment I have found encouragement, reassurance and wise words in your blog, and am very grateful for that.
I do feel at the moment a bit like a pit of ashes, but once again I find a touch of extra strength from reading your experience.
Best wishes
Maggie
November 17th, 2005 at 4:13 am
Ron,
I’m coming up on my full year of post treatment. What a journey it’s been. I have to say that Paul O’s advice made me laugh. Pull yourself up by your bootstraps man and get on with it!
I know you’ve followed my journey so you know it’s been a long one which does end even for skeptics like me.
Good work is all I have to say. Keep going forward….
Nadine
November 19th, 2005 at 3:31 pm
Hi Ron,
You continue to sound self-aware, upbeat and healthy. Love your “ghosts” of treatment analogy – so true. The immediate post-tx status is not free of the meds, frustrating because we so want to be free of them, but is not the same at all as being on treatment. We are new, having re-emerged from a process that has changed our physiology and our psyche. Congratualtions and welcome to the new you!
Sue
November 21st, 2005 at 10:30 am
Keep going Ron, i’m 11 months post treatment and if i’m honest I have only felt reasonably okay for the last 3 months or so. Dont be too hard on yourself re ‘getting back to normal/work’ it takes time.
Just one word of caution, like you I felt absolutely elated at the end of treatment, felt like I had done a marathon. I kept thinking how good it was to be virus free. 4 months later I got the news that the virus was detectable again. After having 100% convinced myself that I had won the war I had to face up to the fact that this was only my first skirmish. Not good to kow that i’m geno 3 and the ‘easiest’ to treat.
So please there is more waiting to be done….
November 22nd, 2005 at 6:46 pm
Hi Ron,
I can identify with the ghosts of treatment, I felt they came in waves then washed away, becoming less intense with time. If I am completely honest I am only just, 16 weeks since treatment, beginning to feel like myself again. After a year on treatment I can only imagine the after effects.
There was much more I wanted to say but found Jane 1962 had already said it beautifully and I would like to echo her messge to you.
Take your time and be gentle with yourself.
Good wishes
Miss Poppy
December 4th, 2005 at 5:25 am
Hi,
Just found your blog. I did hep c treatment in 1997. Matter of fact, I was a participant in the clinical trials that helped obtain fda approval for the combo therapy in the USA. I too am free of hep c according to my blood work. I will say, it took me over a year after treatment to begin to feel normal again. But, have faith. Life does return to normal. No…it is never the same again because the disease and the treatment have changed you forever. I have never been the same person. However, life is very good and I have come to terms with it. Physicanlly, I feel very good now but itndid take time. I do feel blessed to have come through so well. Bless you.
December 5th, 2005 at 6:19 pm
Hi Ron,
I have been away from my internet activities. I am trying to catch up with every other blog.
i am very glad that you are enjoying your health. keep going and i wish you good health for ever.
Ijaz
February 5th, 2006 at 6:13 am
appreciate your post so much, ron. i’m almost 4 weeks post tx (48 wks, 1a) and was starting to panic because i’m not totally back up to speed! reading your clear, sensitive post was calming and encouraging. thank you thank you thank you
ps cleared the virus at 4 months…fingers crossed for me, you, all of us!
March 9th, 2006 at 5:11 am
Hey Rom I just caught you web blog on the net by accident. I have just been diagnoised with hep c geno 3. I have been told that if I have it I got the good one whatever that means. I am not looking forward to the treatment but I will try and keep telling myself it is only temporary. Good thing about us humans we are capable of so much more then we expect.
I am sure there will be lots of prayers, tears and fears but I am putting on my boots and going to war wish me luck