Tuesday, 8 March 2011

3 months post treatment..... expectations and realities.

This blog is the record of my journey, told alongside the experiences of others, through a damned harsh treatment. Once I got to the end of the insane and long haul slog, I found a determination to focus on new horizons and new beginnings. I started a new facebook group, a social club for hep c patients to make contact, relax together and distract from the rough days and the medical sagas.** I began two new blogs, one with a theme of healing and recovering beyond illness and struggle in general (so for hep c patients and others) and the other with a theme of just being silly and having fun. I made more contact with non-hep c friends and engaged a little in discussions on other aspects of real life. And I occasionally tried to lever myself off the sofa, do a little yoga, stand up in the kitchen long enough to cook a simple meal, etc. Meanwhile I struggled still, horribly, with the shock and the realities of end of treatment and a series of cycles of apparent improvement followed by regression back into symptoms and heavy duty reactions. I kept a diary ofpost-tx symptoms for a while - that's lost somewhere on the net where I can't access it. One things I did intend to do was to keep this blog - with it's Hep C focus - updated a little more regularly. I think I got distracted, overwhelmed, tired of the whole subject of Hep C. (I can almost "see" you nodding your heads: at this and at my earlier comment re a damned harsh treatment.)
Well: tired of it though we may be, the realities don't go away through wishing they would, but must be lived through, with the usual approach of as much patience as we can manage at any given time, and one day at a time. My experience of stopping the meds was quite a shock and quite scary. Within days I had intense reactions, such as increased migraines, vomiting and muscle spasms. Nobody had told me to expect this: what the heck was going on? I was desperately tired for a couple of weeks, would have killed for sleep and the partial relief it brings: the doctor doubled my dose of sleeping tablets, to no effect. I had a couple of horrible floods of total see-red riba rage within the first week of stopping, which unnerved me greatly. My knees swelled up to twice their normal size.....

Within the end of the first month I had first a nasty stomach bug, then a chest and sinus infection and a course of anti-biotics.
At around this time, one family member died, another became seriously ill and my membership of a previous support group came to an end and it was rock bottom.... except that we can't let it be, can we? We might have days when we just collapse in on it all. But somehow, we have to pick ourselves up enough to keep going and certainly stay on top of the basics; eat (something) wash, see the doctor, take the supplements, encourage ourselves out for a walk, talk to another human being, and so on..

I have thought hard about whether to write about post -treatment in such bleak terms. My decision, after some reflection, has been to write it as is and as I lived it. We heppers become worried that we will scare others - yet by not telling it like it is, we at the same time run the risk of obscuring the reality and ultimately confusing others and the bigger ppicture (medics as well as patients.) It's a tough dilemma, isn't it? But I made a commitment right from start of treatment that I would write openly about my experience - and not dress it up (or play it down) so I continue that commitment. And of course I know, this is not how it is for everyone. On tx or after. Our different patterns of symptoms are so so varied: some really can say - yes, within a few days of stopping the meds, I noticed: slightly improved appetite, sleeping a little better, mouth did not hurt so much and so on. Others say that months later it;s still pretty much down to the tiniest improvements only, a lot of pain and discomfort (and increased infections once the interferon jabs stop and the immune systems freaks out) and a heck of a lot of disapppointment and ffrustration plus ongoing mood swings and even increased depression.

Of those who find it more difficult - it seems to me that many do not say so, or say very little. To their doctors, to other hep c patients, to their friends and family. There are many reasons for this: but it can be a problem. I am writing about it in a series of further articles - some to be posted here and some at the blog which focuses on broader healing themes. I hope it will be useful to some, and encourage some interaction as well.
Meanwhile, I am 3 months post treatment and my take on things is that there are actually two disstinct phases. When you first stop the meds, for many - you certainly are not actually post -treatment. Many at this time (for around 2- 4 or 5 months) are in a phase better described as the EOT phase. End of Treatment phase: a period of intense transition, phsyical and chemical reactions, and mental and emotional adjustment. Don't underestimate this phase, if it happens for you: talk to your loved ones (yes I know you are tired of explaining) and to your doctor. Rest. Keep doing one day at a time. I think (hope) I am now coming to end of EOT phase, having now cleared (after a second and more heavy-duty course of anti-biotics) the last infection. So I feel like I want to shut down? Ok I allow myself days to do this: then seek to get the focus again for moving forward - but gently.

Actually I am four months post end of treatment. My 3 month pcr was delayed while I was not in a good way at peak of the last infection and with some kidney and thyroxine disruptions. Then, pretty over-due, trekked off to have the blood test, an important one: only to have been informed a couple of days back I'd received the wrong form. Wrong blood test. Cannot be bothered to rant about this - we all now the waiting game and the many delays and frustrations... Wait a little more. I feel like I lost a month. (Quite glad really, it probably wasn't a very nice one!!)

I will update with further articles on post-treatment experiences and the EOT phase: my own, and input as described by others, as I have been networking quite a bit on this theme. What I do hope, in the meantime, is that we Hep C patients will continue to tell our health care practitioners more and more how it REALLY is..... so they will perhaps stop telling other patients "you'll be pretty much back to normal within 6 0 8 weeks." Thus leaving patients damned scared and confused and effectively unsupported. The "loop effect" here I think, is that a lot of medics actually believe this: because many patients aren't telling them differently.... well we don't want to fail or be considered neurotic or make a fuss, do we? I hope we can break these cycles...

more soon, and I also wish: to YOU: good health, good friendship and support and good heart and hope. xx eva day

The newer blog which focuses on surviving and thriving beyond Hep C and other chronic illnesses or life challenges, as well as choices for positive living, is at the following link:
http://eva-everydayadventures.blogspot.com/




the blog for fun and random distractions and play is at:

http://cloudkooky.blogspot.com/


the facebook group page for social support for all hep c patients and carers: still going, and relaxed and supportive. if interested, contact me under my name via facebook.


all good wishes - eva day. xxx

6 comments:

  1. Eva,
    Beautifully described, and of course you know I agree with you that ultimately it is better to know that there is at least a good possibility of taking quite some time to recover from tx. I'm so glad we have gotten this conversation going, if I hadn't witnessed your eot struggles I may have thought I was just crazy, or weak or whatever. I think of how I followed you through this journey, you were always about 2 months ahead of me in tx and how much it helped to have a window to the near future. I hope we can all continue to do the same for those who are coming up behind us.
    Peace and Love,
    Jenny

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  2. Eva,
    I've also worried occassionally about being too negative while describing what I've gone through during tx, particularly in some of my journals on Daily Strength. I know how some of the "horror" stories of tx scared me from starting tx, but it seemed for every horror story, there was another of someone who had worked and gone to school full-time while on tx. People need to hear people's individual experiences as they are as varied as the individuals themselves. For the most part though, as hard as tx has been, I imagined worse. I think the eot experience is especially important to talk about. It's not talked about enough. I don't recall hearing much about eot before I started tx, and even well into tx, I expected that I should be "good to go" a few weeks after...hence the "countdown" to eot. I'm not there yet, but I'm glad that I've been able to hear different people's struggles with the continued sx after tx. I think my expectations would've been way too high if people weren't honest about it, which would've undoubtably led to more frustration and depression. We need to know what to expect...good or bad, and so we need to share the good and bad with those who are just beginning their journeys. It won't do anyone any good to "sugar-coat" things. Sugar-coated shit is still shit after all ;-)
    ~Patty

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  3. I know that after I had my transplant I thought I would just 'be better' and that was it, doctors told me the change of quality of life following a transplant would be remarkable and compared to how I was prior to the op it was - but it was a long way short of being 'better'. When that realisation set in it was devastating and now I'm looking at treatment for HepC when I'm in a low place seems daunting. I have to go ahead nevertheless and I'm gonna be drawing on you guys more and more often to get me through it I'm sure. thanks for sharing eva x

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  4. I hear you guys, and thanks for your comments and experiences, I am right now gathering some more patients experiences for a subsequent article..... wishing you good road ahead. xx eva

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