Thursday, 24 March 2011

HCV and the Next Taboo..... Shadows beyond Treatment

(this post is dedicated to : Margaretha: Sherry: Skank: Jenny. and all post treatment ) One of a series of post on Hep C post treatment recovery

I write this article for all those reaching the end of the many months of a gruelling treatment to combat Hepatitis C., and those just finished in the last few weeks. But if any of the themes are relevant and helpful to those recovering from treatment for other conditions - please share with them, the link for this blog. And please engage in discussion and shared experience, both here via comments and amongst your own networks. Why taboo? I am not talking about the more general problem of disclosure of hcv status so I won't say much here about the stigmas of actually having Hepatitis C. For most patients, even if not directly in the firing line of it, the reality of stigma for some is surely at leastfamiliar. There is some debate refuting that stigma exists, mostly from those such as myself fortunate enough to be in a personal circle of support or environment where there is little judgement or serious consequences of disclosure. But it's is a real problem for many, I know from personal stories of others. Can't tell family / boss/ collegaues/ neighbours about .... the nasty disease. This of course adds to the struggle and isolation and difficulties asking for support, both practical and moral. Well, many including myself have written about this elsewhere - and hopefully will continue to do so.

Here I want to talk about a very subtle taboo which shadows both our relationship with others in our lives who don't have Hep C - and even sometimes with other Hep C patients. It really gets tough when Hep C patients feel confused or discoouraged as to how or whether to talk about more raw and ugly issues even amongst other patients. Please don't all yell at me at once and insist the Hep C support community - both on-line and in real time support groups - is a conclave of angels!! And that we can always talk about things totally openly. Sure we learn to have tremendous compassion and insight in sharing a way through this stubborn and often horribly cruel disease.... but we have our Achilles heels and learning curves, too.... The discomfort of others speaking openly and uncomfortably and raising themes that are scary, too intense, too "negative" is at times another obstacle to be negotiated, even amongst patients.

Maybe to describe taboo seems a bit over-stated? I don't think so though - I felt terribly uncomfortable trying to talk about my experience of post-treatment realities: there was often a real awkwardness or uncomfortable silence, or defensive (or corrective) responses from others. People don't want others to shed doubt on the overall choice to treat, or don't want to hear concerns and struggles which they themselves may be trying to push out of their own minds.

A taboo can be an absolute social injunction against a particular theme or behaviour but it can also be more subtle. Here's one definition:

Taboo: A ban or an inhibition resulting from social custom or emotional aversion.

I certainly felt the inhibition, the emotional aversion: and have been told by others that they did too..... I think this is actually quite powerful and potentially quite damaging.... As those who remain very isolated after the meds have stopped, but are still incapacitated and struggling, can experience this as a very bleak time and there is then the additional isolation of being not only physically isolated, but also locked into a kind of silence and disconnection. Not great for feeling healthy, whole and confidently positive.... Well, the only way to make it more possible to talk about certain themes is ....
to talk about them. So:

What I want to touch on here is: * how different the experience of recovery beyond treatment can be, for different patients * how for some it can be another phase of struggle and symptoms, in the road beack towards recovery (so don't read on if you want simple reassurance, without the harsher realities of those times when it doesn't happen quickly or smoothly but do read on if you want what I hope will be a realistic and balanced picture. * how difficult it can be for many Hep C patients to discuss, describe and share their Post-Treatment recovery issues openly, clearly and honestly - even sometimes, with other Hep C patients, including those who are themselves Post Treatment.

Please let me say - and be heard - really clearly: that no judgement is implied of anyone, in raising this. Those who do speak out, or chose not to, or are not sure how to, and those who have genuine concerns about what gets described and how... Were someone to deliberately obfuscate the realities, for agendas of their own not helpful to patients - then that would be disappointing and wrong, and perhaps that does sometimes happen. The problem of deliberately obscuring the reality does exist, as many have quietly, or loudly, told me, following my own choice to write about it from my experience..
But on the whole it seems to me that the confusion and anxiety about a straightforward discussion among patients and between patients and health care practitioners, has its roots in a number of factors:

* patients who are post treatment don't want to discourage those who are considering starting treatment or are on treatment.
Because if they don't treat - then what?? There aren't a great deal of options in combating Hep C and it can be a serious disease. Conventional combination therapy can be for some a heavy duty and gruelling treatment, for others it will be less severe and for a few - some 20% - not too bad. But when it is bad it is - very very bad. HOw does a person make a choice to willingly step into such a treatment programme - for 24 or perhaps 48 weeks (or more if there are problems) if everyone is saying - it doesn't get much better for another (x) number of weeks once you are done? We WANT to encourage each other to fight the disease and we want to be honest - but how the heal do you get the balance? In the words of the song: "Do you want the truth ... or something beautiful?" Treatment can be ugly - recovery ain't pretty ..... How to describe the varied range of reactions?

* difficulty in ourselves in acknowledging the reallity of recovery. and awkwardness around causing discomfort to others
we held out through treatment by telling ourselves how much better it was going to be when it stopped (relief AS SOON AS POSSIBLE PLEASE!! LIKE - YESTERDAY!) when we hit EOT (end of treatment) it can be hard to admit even to ourselves that for a period of time we feel - no better / worse / tiny signs of recovery but screamingly frustratingly tiny/we don't even WHAT we feel like. ...... So we tell ourselves, yes I am feeling better..... (no I don't think I am) round and round in our heads till we have no idea. Then someone else asks "how are you" - and no wonder we don't know what to say. Far easier to say politely - yes, ok, getting there thank you. I didn't do much of that myself (being the awkward say it like it is type) but I did do it a few times when I was very tired - and a bloody lonely feeling it is, too.....

* conditioning. we have been told so often by others how much better we will soon feel and we are also unconsciously aware of covert social expectations to pull up, get it together now and get on with life.
This is not necessarily malevolent or deliberately cruel, from anyone - it's just steeped in our cultural attitudes to illness, positive attitudes, needing and wanting solutions and to "fix that which is broken" and other people's and everyone's fear of sickness and damage and vulnerability. So we encounter - in ourselves as well as others - a subtle background attitude: ok you've had you long and severe run of being ill and unable to function. Now you're done, no more meds - have a rest for a few days and then get back on the conveyor belt..... Sounds brutal but it's out there. Actually, I said subtle, but it's not always that subtle - even in the way we can do it to ourselves. I think also we fear that we are "miserable / depressing other people/ seen as inadequate or failures in our own eyes or others for not being tougher and overcoming symptoms through sheer positive thinking and willpower." This is where I think that misconceptions about positive thinking and mind-body healing and a strong attitude can get distorted and be harmful.

* Issues around images of strength and weakness, heroic survivorws and thrivers, etc.
We don't want to tell even other post-treatment patients or our own doctors that we are still weak, ill, sore, struggling - and minds and emotions still disrupted. What is .... they're recovering better than me? (I don't want to know) I am doing better than them (I will scare them) My doctor thinks I am neurotic? My boss thinks I am a slacker? and so on and on and on..... We feel inadequate. "Failure" to recover promptly and more robustly is in our minds, subtly, somehow a personal weakness and letting the side down.. We really need to bring this one to the light for healing, I believe. It is very undermining and insiduous.

Imperfect and awkward as it is, this is my intial thoughts on how to start clarifying and describing and sharing what is really the post-treatment experience and journey for Hep C patients..... It is part one of three articles I am writing, each with a different theme..... and I do invite you to comment, to exchange messages with me, to share your experiences with other patients - and maybe take a few small risks - or bigger ones if you feel able. And to begin to talk more frankly with your health care practitioners.

That leads me to mention the theme for a further discussion - and then to close for now. In the second part of this series on post-tx , I want to discuss:
* issues relating to discussion of recovery with consultants, nurses and other medics (and fears and anxieties surrounding that) as well as same within friends, family and at work.

Also the next, and final post in this series, will focus on more practical/ tangible and /or solution -drive themes: ie patterns of recovery and regression post treatment and different phases. where to go for best health care and nutritional advice. networking with other patients, especially post-treatment. invited shared experiences and descriptioons and collation of different symptoms, recovery signs, time periods for real improvement etc...

eva day. xx

NOTE: please contact me if you have experiences to contribute, re post-treatment, for the next post in this series. this may be anonymous or by name, as you prefer.

Note: for those networking mainly from home via internet community: there is a post on my blog "everyday adventures in creative living" which might be relative. It looks at on-line relating and social networking, positive and more negative aspects. post is called What to Write on People's Walls:

the blog has a focus of recovery from life challenges, including illness generally, and on positive choices for community and creative living, so there may be other articles there of interest to hcv patients.

wishing you all good health and good living. eva day

Saturday, 19 March 2011

Absent On the Sofa. Hepatitis C and "Brain Fog."

The normal neurological pathways are malfunctioning, so please do not expect
sense or comprehension: the treatment I've been on has a mangled brain effect.
I am the hep c patient who wanders how some system and a competent ability
can be possible, in managing any personal admin with no focus or brain agility.
Uncooperatively, the clock and calendar i consult show hours weeks months days,
which blur and fiendishly rearrange themselves, confounded by my mental haze.

I used to be quite capable and a practical type of person who'd make "to do lists."
If I try that now, they read like obscure abstract poetry, but the efficient world insists
that bills are paid, cars are taxed and hospital appointments are regularly attended.
I'm phased by tasks, and just can't draw on personal resources on which I once depended.
Gone is the once reassuring background confidence that I can tackle any basic chore.
If I have to call a help line, "please explain carefully, again, and speak slowly!" I implore.

But the person at the other end speaks just as fast, but louder, like a typical foreigner abroad.
I can't grasp what is explained, or join the dots, my once neat information processing is flawed.
Incidentally, when I earlier mentioned motor vehicle tax, I should add - I certainly ain't driving.
I need my fog and hazard lights on even as a pedestrian! there is not a chance of my surviving
complicated and overloaded activities like gears, indicators, or mirror, signal and maneuvre;
even in my own home, most days, I struggle to use the tv remote control or operate the hoover.

And yes it bothers people when they're telling me something that seems not so very complicated
and I stare blankly, am unable to reply, ask irrelevant questions, and perhaps get strangely agitated.
All this might seem very paradoxical, because, some say I often write with insight and some clarity;
So how is it cannot get my head around the ABCs of basic tasks? There is certainly much disparity
between small remote islands of imagination or and good sequential thought or ability to follow
an apparently simple everyday discussion or procedure. It's because of all the pills I had to swallow.
Those heavy duty medications I've been taking for so long have made me confused and scattered.
Yes, I do still have some brain cells, but not in good working order; scrambled, tired and battered.
And although I write this with good cheer, and a light-hearted tone, not sounding too distressed,
please understand the battle, and that I am painfully aware of how my competence has regressed.
For in this rhyming story, I want to let you know that there is sadness, loss and disconcerting fear,
that in exhaustion and befuddlement, my previous abilities and skills may permanently disappear.
I have to work each day to encourage my own thinking functions, often push past shutting down;
and I need you to be patient, understand this sad happy distracted hopeful moron in a dressing gown.

(eva day)

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:

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

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