Tuesday, 12 July 2011

The Bloody Truth (part one,) Post Treatment Realities

Pandora, in Greek myth, was warned not to open the box. Poor girl, I always thought what a rotten, dirty trick that was to pull on her - any intelligent person with even a small amount of healthy curiosity would have opened of course. It was a set up, obviously. Perhaps Pandora was the world's first true scientist and investigator. Unfortunately (as science and life generally tends to do) things got messy. Opening the box lead to the release into the world of all the evils, fears and torments of the human journey. Is Pandora personally responsible for this, or was it Zeus (the bastard) who set up the in vivo experimental conditions? Or shall we just accept shared moral and spiritual responsibility as members of the same race and get on with making the best of life?

Getting on with making the best of life, as it is in harsh reality, however screwed up and ugly, is just about all you can do, once treatment is over. You certainly can't take your box (containing 24 weeks, 48 weeks or however long you battled in out) back to the retailers or your consultant and say - this is a hell of a bum deal. I want to change my mind. I am returning the long-term damage, physical and mental ravages, total personality melt-down and bad dreams and requesting my former life and self be returned to me, virus or no virus.

What I would like to know, though, is why does no-one (of those who certainly have the ability to do so, should they be willing) tell THE BLOODY TRUTH about Hep C and it's current major, conventional combination treatment?

It is hell - not for all patients, but for enough of them to be of serious concern if we really as a society, care about people, individually and collectively. . Unless, of course, there are other reasons and agendas for a medical and social propaganda which so often insists that this tx and and it's after-effects is moderate, "do-able" and without serious and measurable long-term damage.

For some, for many, this is true, and much goodwill and congratulations and all good wishes to them. (Be assured I have plenty of anger and bitterness, but shall reserve that for those who have either deliberately lied to me or simply done so from laziness and indifference, whilst being well paid to provide me with some basic decent health care.)

How ugly and ungrateful - to openly express anger and bitterness at a time when a more pleasant and likeable attitude would be to be talking with gracious relief about having so far shown no virus in the blood and my gladness that the battle is done and life and it's promises lies ahead like a clear road to a new horizon.

This piece of writing is really a "thinking aloud" offered not to those doing relatively well or even just about hanging on ok. It's an offering to those other lonely souls who feel - months, sometimes years after treatment - lost, alone, sad, tired, constantly ill and wrong and bad and inadequate for saying so.

That last one is the worst of the burdens, perhaps? Tough enough to emerge from tx in a kind of mad, desperate final stagger, as many of us do, holding on to the hope we have been promised - that we will "soon feel so much better."

And we wait and we wait and have patience (and hope, of course, since Pandora fortunately managed to find that in the bottom of the box of nasties and we are reminded of it by those who do want to be kind and help and support us.)

As time goes on, the fear sets in more deeply and yet somehow becomes more silent, more impossible to discuss. No-one wants to hear that at five months on, you still have open wounds on your skin which will not respond to any annointment and yet you did not attend the dermatologists appointment because you were too trashed to get in the car and go there (or whatever your particular version of this sad and pathetic scenario might be......)

You are not helping yourself. You could be tougher, more positive. Try harder. You ccould be inspirational, too. You know - it's a very popular social model these days, of the valiant patient who goes through something very long-haul and hard core and emerges talking of "hopes, dreams, forgiveness, courage and deep healing." (Think Oprah Winfrey and beautiful survivors on reality and live talent shows.........)

Good role models for us all.

But what about those who feel tired, depleted, and feel that dreams, hopes, promises have simply been mangled into a kind of chemical and hormonal mush and the best one can hope for each day is to have got it together to have cleaned one's teeth (aware of the still sore and bleeding gums and strange mouth ulcers) or brushed one's hair (and how is it one's arms still feel so tired and heavy and scalp still hurts?) And so on ....... I shan't list the many little devilish torments and struggles which continue for so long, post treatment, though I will mention a few more in part two of this theme. For the person of reality checks for those who might desperately need that.

It's not very "nice", is it? The best stories about illness and survival are those with some theme of redemption or spiritual and personal renewaal and rebirth. From the depths of the hideous, the thriver brings forth something beautiful and brave. And states confidently they know themselves so much more, and have a better relationship with life, god, the world, forgiveness and peace and more to contribute. I celebrate that with them, and thank to life and hope for them.....

But what if you were bloody -minded and awkward and socially inappropriate to say: I do not feel special, strong, transformed, optimistic, courageous or stronger. I feel weaker, more tired and jaded, more world-weary and dis-spirited and I like myself and people generally considerably less than I did before.

I don't have the virus (apparently and so far) and "should be grateful" yet all I feel is numb, pointless and "so what?" Perhaps I am just become not so much a nice person and more negative, less able to somehow by will and imagination, improvise a positve construct?

If so, then oddly, I can accept that. I don't feel "nice" - and certainly not cheerful or full or bounce and vigour.

I am quite clear that I am continuining to experience difficulties on three major fronts: 1) various odd physical symptoms. many fairly minor yet added together, in relentless clusters, with relief, the accumulative effect being that I feel constantly tired, uncomfortable and feekking irritated (it just becomes damned wearisome and frustrated, undermining every simple task and activity.) 2) Compromised immune system - never serious enough in terms of actual blood readings for doctors to have serious concerns or plans for major intervention, but enough to be frequently besieged by bugs, germs, and anything going. 3) Neuro-toxicity effects. Please, can we actually acknowledge this, between doctors and patients? My cognitive processes, memory, concentration, sleep patterns, pain tolerance and pereption, muscular spasms, mood, perception and personallity are all hugely disrupted and stabilising is so slow and erratic as to be frightening, sad and isolating in many ways.

How difficult it is to describe and convey these realities to a doctor or a consultant as they simply stare back at you with an expression of bewildered helplessness and frustration and one begins to feel that one is a rather annoying patient - and letting the side down by not doing better and getting back to normality (remember that??)

Most patients do better - yes. We strugglers and stragglers and battered wrecks are in the minority. We soon learn to shut up about it. Don't tell the bloody truth, it's annoying and incovenient and hints at the fact that you are possibly just neurotic and wasting valuable medical time, costs and resources. Just get better. Eat better. Go for a walk every day. Think Positive. Pull Yourself Together. We soon learn to shut up about it all......

My doctor has no idea why I wake some mornings (after strange, broken cycles of two hours of sleep, disrupted by twitchng muscles and bad dreams) with swollen ankles (I am talking big, here) and sore kness and another outbreak of strange rashes on my hips. Bloods are all (mostly) within normal (ish) range and though not quite right - well if there is yet another infection, do I bash my system with yet another course of anti-biotics, or just take some more echinacea and hope it passes?

And if anti-depressants are stabilising my mood enough to make me just quietly morose and not out in the world infflicting severe mood swings on other people, then isn't that at least some kind of management?

If my transactions and interactions in the daily outside world are now severely limited by my poor concentration and comprehension - does that really matter as long as I somehow keep functioning at a basic level and with a bit of help, patch up the various mishaps along the way?

Many people look back at treatment - and are glad, grateful, that they did it and got through. Those who got the precious SVR (fantastic) and even some of those who did not, but who gave it there best shot and perhaps at least beat the virus back for a while, bought themselves a few years.

My bloody truth (and I have no flag to wave about this - the choice is personal) is that, had I known the reality of the treatment and it's possible long-term effects, I would not have undertaken it.

No way.

At no time, ever, was I given a realistic over-view of what HCV treagtment was really about and what it's possible long-term consequences could be. During the worst periods of treatment (physically battered and mentally deranged) doctors and health care prviders all appeared rather puzzled, as if this were a peculiar and indiviidual abberation and odd reaction on the part of one particular maverick patient - who somehow seemed to manifest not only a "difficult" atttitude and psycho-social profile, but also a difficult biological response. Which could therefore be totally discounted, against any other evaluation of the disease and it's treatment, in approaching any other patient.

But, get this! Every other patient I have had contact with who has also had such horrible, difficult and truly desperate symptoms has been treated in the same way - as an exception, an oddity, an abberration and as somehow who is inconveniently disrupted expected treatment protocols and outcomes.

Don't tell the drug companies and the general public, for god's sake!

I have no great solution for you, if you are one of those who, like me, is struggling daily with pain, discomfort, disfunction, loss (of lifestyle, self, sometimes hope, clarity) and with fear - bloody fear. All I have to offer is the courage to share the experience of telling it like it is and telling the bloody truth. One does feel less alone, that way. Annd we can remind each other that:

Physically: if you are tired, sore, have no body clock anymore, suffer frequent headaches, skin outbreaks, feelings of toxicity, nausea and dissiness - whatever your particular nasty mix: this is real and worthy of discussion and acknowledgement and consideration from your health care providers, without your being dismissed or told it's your age / attitude / menopause or any other attribution with which you are shunted sideways (God forbid we name the treatment up front for what it can do.... at worst.)

Mentally and Emotionally; you are NOT inadeqate, pathetic, bad, wrong, useless or any other criplling doubt or label which you or others might apply which will only further underminbe and crumble your daily fight to be a whole person. You MUST remember you have undergone several years, no doubt, of the insidious ravages of the disease itself on the whole system. Followed by six months, a year (whatever) of pumping yourself full of a powerful duo of physical and neurological toxins, alongside all the other secondary meds to help you get through that. Your brain gets FUCKED. At the same time that this is all happening, you have experienced the loss of huge expanses of your former lifestyle, abilities, personal attributions, social circle, finances, and even comprehension of basic routines.

Your personality got shredded and has not remerged all shiny and new - or in any recognisable form at all except for something rather like a zombie. (No wonder we Heppers so often have a fascination for tales of creatures of the underworld and aliens....)

Your thoughts and mood and attitudes are not as bleak and sinister and still murky and often nasty and/or confused because there is something fundamentally wrong with you or you are inadequate in some way. In fact - if you somehow keep going, then you are admirable, and one tough cookie. The problem, remember, is that your brain and emotions have been completely scrambled. And life has hurt badly and been terribly disappointing and painful. While you were struglling with the phsyiology of it all, many of the people and the familiar shape of your life and world just walked away or totally dissolved.

It seems to me fairly understandable, normal, human and deserving of compassion and support if you are: angry, in a bad mood a lot of the time, sore, tired, lacking enthusiasm and generally not cheery or particularly jolly, sociable or friendly. Be patient (yes, we are back to the hope, patience, and time factor, which is pretty much our base camp.)

I do no feel I have "learned a great deat about myself or life" as a result of Hep C and treatment. I reckon I had already done quite a lot of living, before that took over completely - and now, like many, realise also why some things and "solmething" was not feeling right for a very long time before diagnosis.

I refuse to mythologise this illness and treatment any more. It's horrible, messy and nasty and very sould destroying for some folk. If you didn't manage to somehow keep on working through treatment - or get back to sports or parties or whatever other real time and real life stuff, a few months down the road, know this:

it is NOT because you did not have "the right stuff." God knows, none of us enjoy or want the misery and loss of it all....

it is because for various complex reasons, the disease and the various factors combined in treatment hit your system at the more extreme end of the spectrum. A bummer, rotten luck, etc, but not your fault (come on, we all know how that suspicion creeps around at the back of our minds, and between the lines in other's words and looks....)

the bloody truth is that Hep C itself can be, at worst, a very nasty disease (and could all those - including doctors, who said things such as "it's not that bad" just get real and/or fuck off?) and treatment for it can be a dreadful torment followed by months / years of tough, lonely and bewildering struggle.

biological and hard facts of life - and, no, we still don't have the answers to a lot of it.

well, ok, so you did tx and no-one warned you not to open that particular box (in fact, they probably said it would be unpleasant but moderately ok.) and once treatment was done - a few months down the track, you would be alright.

and you're not? well, so let's at least talk to each other openly about it, tell our medical practitioners the bloody truth and keep insisting that they begin to do so, too, and talk openly with other patients of Hep C.

I would never advise anyone for or against the treatment option. I just tell my story, and share my observations from others I've known along the way, and suggest this:

make sure your choice to treat is as well informed and considered as it can possibly be.

make connections with others fighting the battle, as much as possible.

and ask that doctors tell the bloody truth.

wishing you always hope and humour, and health. eva day