Thursday, 24 December 2009

The date has been set. After what seems like an eternity of waiting I now know when my Chemotherapy will start. Until now, whilst I knew what lay ahead, it always seemed so distant but every other landmark event that originally stood in the way has pretty much passed and only now have I started to fully comprehend the next step.

I have got well and truly into the swing of working from home and the initial shock of diagnosis is a distant memory. I’ve been eating well, taking my vitamins, avoiding sick people and although it’s been frustratingly dull at times it’s not an intolerable way to live; if needed I could certainly carry on this way.

Hairy Cell Leukaemia progresses slowly but cannot be left to go unchecked forever so having spent a few months in effective retreat it’s time to start walking the path back to the real world and it could be a rocky journey.

The Consultant dealing with my case is very positive about the outcome of my treatment; the handful of other sufferers I have found online are all doing well post-Chemo, some are in remission; and friends and family are being very supportive. I have my low moments but I know that I can make it. I know that I can beat this thing. That said I am not ashamed to admit that I’m more than a little scared about what is to come.

I have spent life in pretty good health and aside from surgery to correct a deviated septum a few years ago I have never spent any time in hospital. I have never broken anything; I have never been seriously ill. Personally I find that it is much easy to deal with difficult times in your life when you have already been through something similar whether it is overcoming physical pain, emotional trauma, or dealing with difficult situations but for this I have no basis for comparison. I haven’t had any form of rehearsal, and therein lies the fear.

It is a fear that needs to be acknowledged and dealt with though as I have no choice. There is no other way. I remember in an interview some years ago illusionist, endurance artist and general weirdo David Blaine described that he dealt with plunging himself into a tank of ice cold water as just being something he had to accept as the next step in his life no matter how painful or uncomfortable. That is, I think, the only way I can see myself getting through this from a mental standpoint: accept the inevitable; learn from the discomfort; and grow from the experience.

After all what doesn’t kill you, serves to make you stronger.

Monday, 21 December 2009

Unable to go out much, due to a combination of my ongoing Crowd Avoidance Scheme and thoroughly inclement weather, a lot of this year’s Christmas shopping has been done online. Packages have been arriving almost daily from Amazon, Play, and a whole host of other internet shopping outlets. All have been eagerly awaited by my wife who relishes in the process of wrapping presents almost as much as she does in opening them.

Today’s delivery isn’t much of a Christmas present but was one that I have been looking forward to and was beginning to get concerned that it would not arrive in time. The delivery contained 9 empty blood collection tubes and now it was here I had less than a day to fill the tubes and “return to sender”.

A research team at the National Institute of Health in Maryland are conducting research into current treatments for Hairy Cell Leukaemia with a view to increasing their effectiveness, extending remission times, and possibly taking steps toward curing the disease. For any medical research to be worthwhile the number of subjects studied needs to be as large as possible and this is clearly a bit of a bugger for those studying rare diseases whose subjects may be few and far between.

Having contacted the doctor running the study, forms were filled in and arrangements made for blood to be taken here that could then be tested there. Not an easy task as it has meant coordinating the availability of someone to take the blood in my local NHS hospital in sequence with the work of another Phlebotomist in the US who needs to do more tests two days later once Federal Express have shipped the tubes the five thousand, nine hundred and three miles between the two.

The first half of this mission has been successfully completed although not without undue trials in establishing just what paperwork you need for shipping your own blood around the world.

That and the mild sting in the arm induced by filling all nine tubes is all behind me now and I hope that, in the same way that a group of my colleagues’ blood donations a few months ago have helped people in my position start on the road to recovery, my relatively small donation today can help in the quest for me, and the handful of other sufferers around the world, to live completely normal lives.

Saturday, 12 December 2009

Days like today are perfect for brisk walks. Brisk walks being the only exercise I am allowed at the moment. My eagerness to go to the gym and build up my stamina ahead of my impending therapy was stifled by warnings from my Consultant that right now I’d be putting to much strain on a system barely coping with getting the right amount of oxygen around and if I were to trip and fall I’d risk rupturing my spleen and worsening my plight.

We’ve had a lot of rain of late so days like today are to be enjoyed. Cold crisp air, utterly fresh, blowing off the river. Walking arm in arm with my wife as we stroll along a line of trees casting their long winter shadows on the ground. The weak sun glinting through leafless branches as it arches low in the sky.

With each deep breath I feel the cold air fill my lungs and imagine it going further, coursing deep into my body. Whistling through my bones, whipping up small tornados in isolated capillaries. Blowing all the hairy cells along in its path like autumn leaves being pushed along the ground and as I exhale all the hairy cells are conjured into a spinning cyclone in my core turning to dust as they pass my lips into the glare of the sun.

This is a particularly beautiful route to walk at any time of the year but particularly now, when it’s dry, I make a point of getting out. Not that I’ve needed any excuse to get out over the last few days. On Thursday, the weather similar to today, my Mum and I walked up to the hospital for my three weekly check up.

My blood counts are steady, still no increase in the white ones and my recent transfusion has given my red cells a much a needed boost. All being well that will be the last transfusion I need for a long time. Not that I mind them, I have a lot of other reading I could do with catching up on, but I just long to be normal.

On Friday I had a proper day off from work but the lay in I had hoped for was not to be. Once again I was of up to the hospital but this time with my wife and the bump. It was time for her to be the centre of attention and it’s a baton I am happy to hand over. All is well, the baby is growing as she should and once again we got to listen to her heartbeat. That’s actually what we call her, “Heartbeat” as on the very first scan, after only two weeks, that was all there was to see. Faintly beating in a gulf of space.

Feeling I’d seen the best part of the maternity visit I left my wife to watch the doctor repeatedly fail to log into his computer - it didn’t have to take two of us - whilst I walked to the other side of town for another medical pit stop: my second Swine Flu jab. Delivered with such efficiency I didn’t even get to sit down and was actually leaving the surgery ten minutes before the start of my appointment.

It’s now just less than a month before I am likely to start my treatment. I have my next hospital appointment on New Years Eve and, barring any upturn in the swine flu figures, the order will be placed for my Cladrabine. The drug that I’m hoping will whisk through my body, searching every nook and cranny where the hairy cells hide and on finding them shine so cold and bright that they all turn to dust.

Friday, 4 December 2009

Last week I had another blood transfusion and aside from a break to listen to Jacqueline du Pre’s incredible 1965 performance of Elgar’s Cello Concerto I spent the entire six hours of the process reading a book on Business Continuity Planning.

Whilst to most, if not all, I’m sure this sounds like one of the dullest ways to spend any time at all I’d argue that it is simply a matter of making the best use of all time available. With no access to phones or the internet I see the blood transfusion room as a pleasant sanctuary away from the world rather than a restrictive cage. This doesn’t mean though that I can’t engage in valuable employment. The book in question has been sitting on my desk for months and whilst I have had every intention to read it other work just always seems to get in the way. Eventually though even those tasks on the back burner need to be dealt with one way or another.

Engulfing myself in how and what a business can do protect itself from all manner of disasters that may befall it I was stuck with a number of parallels between the hypothetical business scenarios I was reading and my very own very real state of affairs.

Business Continuity Planning, and those reading this whom I work with are going to hear this phrase a lot in the coming months, is all about preparing an organisation so that if disaster strikes, in one form or another, everyone knows what to do and the business can continue to function and ultimately continue to make money. Most companies without such a plan in place simply crumble in the months following the disaster after all involved have either run around like headless chickens for a few weeks until they ran out of money or simply abandoned the venture completely.

I’m not suggesting that anyone prepare and document ahead of time a set of plans to follow should a crisis erupt in their lives. To do so would be a waste of time best spent doing pretty much anything else you can think of. The connecting theme here is that of an absolute need for continuity in the face of disaster whether it happens in business or our personal lives.

If you’ve just come to this blog having been very recently diagnosed then I know how you feel. Your life, however old or young you are, has just crumbled around you and you simply cannot see a future. You are absolutely desperate for none of this to be true; casting your mind back to find a way you may have changed this and looking forward to moments you’re dreamt about but now fear you may never actually see.

What is important now is finding continuity, making a plan. The past is unchangeable; from it you should take only lessons and leave all regrets. There is a future. But it is a future that may require change and adaptation, possibly only for the short term, but you do need to continue, you cannot lose focus, you cannot give up. Ignore the resources you can no longer use or the things you can no longer do. Develop, enhance, and embrace that which you can do and those who you can depend on. Work towards a new future, but importantly, find enjoyment and positivity in what is happening in the now. Every day alive should be spent living, truly living.

An old friend of mine who is suffering from Chronic Kidney Disease said to me recently that “Life is everything” and for me that really rang true. You cannot let disease or disaster mar your passions or the ability to delight in the simple things in life.

Business need not end with disaster and living need not end with diagnosis. Both can continue.