Saturday, September 15, 2012

Spelling it out

My idea at the start of my course of treatment was that I would use this blog to record my trials and tribulations and use them as springboard to deep and meaningful thoughts. The reality is that, whilst adversity has given me many new and unwanted insights into the world and my place in it, the trials and tribulations have more usually beaten me into a relatively zombie-like numbness!

If you are going through the treatment right now or are thinking of doing it, this is not the post you should be reading! My advice to everyone is to do it if you possibly can. It will be one of the most challenging things you've ever done, but when you complete it you will have not only rid your body of a long-term, degenerative disease, you will have accomplished something that you can be immensely proud of.

If you are likely to start the course any time in the near future though, avoid reading to much about the side-effects and possible complications, it will set your expectations (there's a whole post to be written on psychoneuroimmunology) an scare you off, perhaps needlessly. However at some point I need to put down the specifics of the Hell that I'm going through, not because I want to impress people - as I've said many times, one of the things that keeps me going is the fact that I realise there are people who are suffering a whole lot more than me and don't have the luxury of knowing that their problems will stop at some point in time. For many it is a life sentence!

No, its just a statement of fact - make of it what you will. Condemn me for a weak fool if you will, suffering is relative and you might have a greater challenge, but never, ever pity me. Sympathise, understand, make allowances, even appreciate your own health more, but don't you ever pity me! I am exactly the same man I was when I started this course of treatment and I demand you treat me the same way - love me or hate me! To pity me means I am less than what I was and I might be weaker, more fuddled, more emotional, at times a physical wreck, but inside this confused, feeble, plodding shell is the man who started the course and the man who will be even better when he has damn-well finished it!

So welcome to my Year of Hell - tread no further if you are thinking of starting your own!

I take an injection of Interferon once a week, Friday evenings, I'm so used to it now that there's no mark or discomfort any more. It can be an itchy rash and if you do it too often in the same place can cause necrosis.

I take three Ribavarin tablets, twice a day. They seem to be what affects my appetite and hemoglobin levels and aren't a major problem to take.

The major problem is the four Boceprevir I take three times a day. The side effects that I can attest to are...
  • vile, metalic taste at all times of the day
  • reduced hemoglobin, T Cell and White blood cell counts
  • extremely hard to digest: stomach gas and acid bowels
The accumulation of the three - I can't point to one and say which is the culprit for sure - have given me a range of major and minor problems both physical and psychological hat are frankly destructive to my body and mind.

I have no appetite and when I do eat, most food is either tasteless, dry and spongy, or just plain bad-tasting! Things I know I love - coffee, chocolate, honeycomb ice cream! - no longer taste good. Even though I eat less my body's metabolism still needs that minimum number of kilojoules to survive and so it burns my reserves. Unfortunately muscle is the first thing to be burned if I let things slide so that I will become feeble and flabby.

I cannot maintain my muscle bulk by exercise because my decreased hemoglobin levels mean I just can't transport enough oxygen fast enough to keep my muscles moving fast enough and long enough to have a training effect on them. However the less I do, the less I can do! It is a viscous cycle of  do less, become capable of doing less, do even less...

Psychologically the drugs artificially create or enhance depression, lack of drive and determination and most especially my control over my emotions. If I do not watch for and avoid the tell-tale start-up signs I can become an angry, shouting fool or a sobbing wreck. Of all the side-effects this is the most disturbing since, although I can forgive myself for physical weakness, society has conditioned me to find such extremes of emotion as unacceptable. Usually I can see what they are and fight them by berating myself for giving in to a self-indulgence, by recognising that they are not my emotions but something artificially created by the drugs however sometimes it just gets too much and I have to allow them to sweep over me and just pick up the pieces afterwards.

I've only really lost my temper once to any great extreme over a silly, stupid argument and I just walked away and went to bed so that the next day we could both apologise, ignore it and go on with our lives. I didn't let it fester because, although I do have a quick temper at times, in most cases I can control it and only lose it over important things that I want to make an issue over. In this case it wasn't me that was angry, it was the drugs and as Kang said, "Klingons fight for their own reasons!"

By the same token I will admit to being more soft-hearted than the average man, I find it especially hard to maintain my composure at the death of children or great heroism or sacrifice. I find it embarrassing though to be now moved to tears by movies, children suffering or just plain depression. It distresses those who are close to me - I don't think my kids can handle it, it must confuse the Hell out of them!

I've got to point out that these are extremes and I've developed tricks and strategies to avoid them. I put Hemp cream on the dry skin on my back that is so itchy it is driving me up the wall! I am as careful as I can be to try to keep to my timetable for taking my medication, not just because this is most effective for the treatment but because if I don't, my bowels become incredibly acid! I berate myself for any emotions that are self-indulgent - feeling sorry for myself is not a sufficient cause for losing control. By the same token I try to keep my bad temper down to grumpiness or obscure irony that is lost on most people.

That's just the tip of the iceberg! I'm thoroughly fed up with this and I want it over with now! Unfortunately I have 16 weeks to go! What can you do for me? Cut me some slack. Don't think too harshly of me if I don't perform as per normal - I've told the people I work with that in none-work or family oriented matters I might not be reliable.

Just don't pity me. It makes me angry. You won't like me when I'm angry!

[Lighten up - that was ironic humour!]

Sunday, July 22, 2012

Milestones

The good news is that, for the second time in 25 years my body is now free of Hepatitus C - my last blood test showed a zero viral load! The fact that it only took 12 weeks with this course of treatment rather than 6 months in 2008 is a testament to the the new drug, Boceprevir. The bad news is that I now have 36 weeks to finish the course to make sure I don't relapse again!.

The side effects are getting more pronounced. My lack of appetite and the vile taste I have all day, conspire with the sponge-like taste and texture of most food to reduce my kilojoule intake so that my body is burning my remaining muscle bulk. This in turn is making me more feeble and less able to turn my food into muscle rather than fat - a viscous circle!

I was determined at the start of this course that I would not give up on my gym classes as early as I did in 2008 - I caved in to pressure from the clinic nurse at the time who convinced me I had an unrealistic expectation of myself by continuing. It took me nearly two years to recover anything like my normal fitness. Up 'til this week I've been still getting to the gym twice a week - aerobic weights on Tuesday and aerobic combat class on Thursday - but I don't know how much longer i can keep that up.

I would be a fool if I didn't admit there were safety concerns - after thirty eight years in the rail industry I live and breath safety! The problem is that my lowered Hemoglobin levels are causing stress on my cardiovascular system. My resting pulse rate is abnormally high because it is having to pump more blood around my body just to stay alive! When I exercise it puts that system under even more stress.

Yesterday, for example, we went to see "Dark Knight Rises" at the cinema and when it finished I had only got through the doors before I recognised that I was hyperventilating: light-headed, losing balance, pulse racing... Sharyn was with me so I leaned on her until I could get to a chair and started slowing my breathing down. Later that night I had a hot bath which had pretty much the same effect so they're out until next year as well!

I'll keep pushing with the gym classes for as long as i can but I need to think of the next step because i can see that I'll not be able to keep them up until the end of the treatment. To paraphrase Yoda, "There is another" I just need to find something that will excercise my system without stressing it!

Saturday, May 26, 2012

Vulcan Thought for the day

OK, so I'm a Trekkie, so sue me! I love the iconic extremes that Trek has given us with the Vulcan and Klingon stereotypes to mention only two

~~~

Vulcan's are not unaware of the disdain with which most species look upon our desire to master our emotions but to us it is simple: to master the mind is to master reality.

You who are reading these words right now, how do you experience reality? Through your senses, of course. Some species have more highly attuned senses than others, for example a wolf has an acute sense of smell and a dolphin can hear sounds in different frequencies just as some animals can see into the infrared or ultraviolet. However all of these senses render your reality and its amazing array of colours, scents and harmonies, that can range from the repulsive to the sublime, into simple binary code signals flashed along nerves to the physical brain that sits, in all humanoid species, atop your spinal column.

What is the objective difference between the nerve impulses that signify beauty and those that tell us the opposite? Are they positive and negative? Is it a matter of degree, frequency or other biochemical parameter? It is none of these. The difference is in the interpretation that your mind puts to the signals.

To put it in the words of one of your Earth homilies, "Beauty is in the eye of the beholder."

Vulcans are not immune to the aesthetics that define beauty, justice and love. In fact it is because we understand these abstract values far better than you who wallow in them, that we control them so rigorously.

You say that we are the poorer because we do not 'experience' the extremes of reality yet it is precisely because we do know the depths and heights of despair and euphoria that we severely limit them. Vulcan history is a garish panorama of the very best that we can be and the very worst and whilst, on the one extreme, our art and culture is so good as to be almost painful in it's appreciation, on the other extreme the horrors of the terror and depravity that we reached is such as to be almost unbearable.

What you, who say that you experience reality, do not realise is that you make your own reality. A man and woman might look on the same child and experience polar opposite emotions, the one seeing the beauty of procreation, the other seeing evidence of their mortality. Who is right and who is wrong? Neither? Both! Two men with identical jobs can see it as an over-burdening responsibility and a challenging opportunity. Which is it? The importance of the question lies in the way that they react to their perception of reality. Because of his positive attitude, one man might do his job far better than the other. For love, a mother might run into a burning building giving her life in the hope of saving her child.

The Vulcan Academy of Science theorises that it is because of our innate telepathic abilities that, historically, we Vulcans have been vulnerable to the extremes of emotions and must be ever on our guard against both extremes which is why we must react to them objectively and logically.

For humans it is different. Your society is based on choice, the idea that for each situation that you face, you can choose how you react to it. You can choose to be positive or negative. Ultimately, you can choose to be good or evil.

But ask yourself this when you need to make such a choice next, what am I basing this on? Is my perception of the facts objective and thus statistically most likely to be correct? Is it tinged by fatigue or despair?

Or can I manipulate my reality and work onwards with an optimistic view of the data? Humans can use their minds to control their bodies just as we Vulcans do – it is called psychoneuroimmunology. Two people can be given the same course of medication, one told that it has a 70% chance of success the other that it has a 30% chance of failure. It is statistically proven that the former will have a greater success rate than the latter.

Sometimes all that is needed to tip the scales in favour of a desired outcome is that we are actively working, consciously and subconsciously, towards success rather then resigned to failure.

To quote one of your 20th century icons, "There are always alternatives."

Thursday, May 24, 2012

A Ton of Bricks

Week four and, "This is where the story really starts!" The Interferon / Ribararin has hit me like the proverbial ton of bricks!

Sleep is an adventure - I never know what I'm going to get! I've been getting to bed earlier, but I still have to get up at 03:15 so the best I've had in one session has been six and a half hours last night when I went to bed at 20:30. And what a sleep I have! Sometimes I'm out cold from hitting the sheets to the alarm going off and other nights I can be working all night in technicolor dreams! Trekking through green jungle headlands swept by tidal waves, labouring on the tracks - one night I seemed to spend all night trying to email my dreams to myself to so that I could file them like mp4 videos! Another morning I woke up after missing the train because I had to help my wife to bring the washing in... and I mean we got off the train to bring the washing in the off clothesline (which was right next to the station) and we were stranded on the platform holding baskets of washing whilst the train went off with my daughter on it. One second I'm fumbling for my mobile phone to phone her to arrange for us to meet at the next station and the next my wife wakes me getting out of bed.

That was weird! There's years of therapy in studying my dreams! I think I've been a husband and Dad so long that its a core part of my personality.

I can joke about this but the tiredness is a major part of the challenge of this treatment. Not just the physical tiredness, I think that is a seperate aspect, but the washed-out lack of drive. After a reasonable amount of sleep last night, I can at least countenance actually accomplishing something today. It forces home the physiological need we have for sleep and dreaming - I wonder if this side-effect is caused by the drugs affecting my sleep patterns so that I'm not getting enough of the right *kind* of sleep?

These psychological side-effects are one of the most unsettling parts of the treatment, it feels as if it is messing with my perception of myself. I have to just show a bit of moral fibre: is my self image, my self esteem, so fragile that I doubt my own worth because of the external effects of a drug? I know who I was, I know what I have done, what I am capable of. I know that, after this course of treatment is over, I will continue to do extraordinary things because the external influence will be gone.

For now I just need to weather the storm, resist the negative aspects and learn from the experience.
posted from Bloggeroid

Wednesday, May 9, 2012

On The Road of Life

Driving up to the mountains on holidays I was on the freeway and I got cut off by a driver who was speeding in the right hand lane. Contrary to expectation, when he glided past, I could see that he was a well-dressed man in his fifties with a neatly clipped grey beard and office shirt and tie on.  So much for the stereotype of bad drivers being young, lower class and female.

It made me think of driving as a metaphor for life, There are those of us who follow the rules, give way, smile and wave as we cruise though life and then there are... the vexations to the spirit. I could describe them in more colourful terms but out of respect for the more sensative amongst you, I'll keep this blog PGR.

Nobody is perfect, least of all me, but when I break a road rule, it is more likely to be through inattention or by mistake than on purpose. Why? Rules are the agreement we make with society that makes it possible for us all to compete on a level playing field. It makes it possible for the meek and the mad to share the road (or their local community) without fear for their lives or their self-esteem.

I say self-esteem because you have to respect your fellow road users. It's not a competition. I passed the vexation about fifteen minutes later because he was caught in a left hand lane which was going slower. It didn't make me feel any superior to him, although it did reinforce my belief that speeding had very little effect on overall time saved in a journey.

Yet I can imagine his grinding teeth at being 'boxed-in'. His journey was of much more importance than mine and for him to be inconvenienced in such a way... Well, maybe I'm projecting a little here but you can see my point.

You can be a member of society and accomplish your goals without treading on others. We are not a wolf pack where the alpha male is the strongest and fiercest and makes his way to the head of the pack over the bodies of his enemies. The best CEO's are those who can lead their manpower resources with respect and efficiency.

You can get further, faster by making the right decisions than by recklessly "putting your foot down".

Friday, April 27, 2012

The Year of Hell; Week 0; Day 0

The good news this week is that the rumours of my heart attack were grossly overestimated!

I went for a CT scan and heart stress test on Tuesday and on Friday morning was told that the report said that there was no sign of any previous myocardial infarctions!

The bad news, which is really good news in disguise, is that this means that I can take the Boceprevir which bumps my chances of successfully beating the Hep C virus from 55% to 75% - I can go with that!

This meant that I picked up my meds and had my first injection of Interferon Today, Friday.
posted from Bloggeroid

Friday, April 20, 2012

There's good news and... not so good news.

Just when you thought things were shaping up to be pretty bad, they might have got even worse.

My big news for today was going to be that I was starting a year-long treatment for my Hepatitus C but when I got to the hospital it turns out that the ECG that I had on Wednesday shows that at some time in the past I've had a "silent heart attack" and since one of the side effect of the new drug I'm supposed to be having on top of the normal Interferon / Ribavarin is that it can give you arythmia, it means that, if confirmed, I can't go on it.

Dammit!!! I was all ready to start today! I was all psyched up for the next year of Hell and here I get this! I'm booked in for another heart exam next Tuesday where they'll assess the extent of the damage to my heart, evidently if it is just a small section of one of the chambers then they'll let me start. If not they'll let me start the standard Interferon / Ribavarin treatment... but I'd have to be on it for 18months instead of a year!

I don't think so.

In fact I'm sure that's not on the cards. I spent the worst year of my life in 2005 doing that for a 50% chance of success, I registered a nil viral load at six months - there's a story behind that - and relapsed in less than a month from finishing. No. That's like repeatedly hitting your thumb with a hammer trying to knock a nail in and then saying that you'll get that damn nail in if you just keep hammering longer!

Don't get the wrong idea. I'm one hundred percent committed to successfully beating the Hep C in twelve months on the new treatment. I've even got some ideas about handling the I/R treatment better, but you've got to give me better odds than 50-50! If I can't get on the new treatment, I'll wait until something new comes along. The ultrasound results on my liver show that there is no sign of fibrosis there, so I'm in a pretty low risk category for cirrhosis or liver cancer. I can wait.

The news about the heart I could do without.

The problem there is that I push myself pretty hard. I do aerobic weights and combat classes at the gym and I fence on Friday nights, I push myself hard enough to feel absolutely shattered afterwards although I'm not a gym junkie - I wish I could get more time at the gym but I commute too much. This could trap me in a 'Catch-22' situation: if I exercise too much I bust a piston ring, if I don't exercise enough it gets worse!

I don't subscribe to the 'no pain, no gain' theory. Pain is your body's signal to you that you are doing something wrong and need to stop - NOW. You need to find your limit and work towards it, pushing it in different ways to get the training effect. My old TaeKwonDo instructor, Mick, told me one time that he had more respect for people who had enough sense to know when to stop than the Gung Ho types who boasted about how they had abused themselves.

Its all about balance. Knowing what your limit is and pushing it ever so slightly all the time. You can be an even greater warrior by using your head and avoiding torn muscles and broken bones... and heart attacks it would seem. The problem there is that there is no hard and fast rule abut recognising one. It could be the classic pain in the chest - or it could be in the arm! I get wind pains in my chest from gas all the time and yet I've read that the only difference between the two is that the heart attack doesn't go away when you suck an antacid.

I'll keep battling, its all you can do, but sometimes the odds are just stacked against you. However, to quote Heinlein, "If you don't like the game then change it!"
posted from Bloggeroid

Wednesday, April 11, 2012

Another year older...

Last week was my birthday.

Hmmm? Old enough to know better but young enough not to give a damn!

This coming year is going to be a tough one and there a lot of life lessons I want get straight in my own head. Things that I think are significant enough to want to preserve them on the interwebs for posterity. Comments on society that I feel need to be made.

Who am I? I write elsewhere on the internet under another nom de plume, others have been kind enough to pay attention to what I say and I like to think I have contributed significantly to amateur creative production on the web. No, I'm not a professional although, to quote the meme, "I'm not cheap... but I can be had!"

I've been happily married for many years, I have grown children. I'm a child of my generation, a product of the working class who has embraced the cultural and technnological revolution of the 21st century.

I have Hepatitis C and for the second time I am starting a twelve month course of invasive treatment to clear my body of the disease. The last time I did this it was the worst year of my life - The Year of Hell!

Welcome to The Year of Hell, Mark II.