The last day of my Cladribine injections finally into my arms was followed by a long wait for blood test results. I am officially neutrapenic and, having experienced some shivering overnight there was concern that neutropeanic sepsis may have been lurking in the darkness.

Even with minimal white blood cells there are there indicators in a blood sample that show if the body is battling with infection. Eventually the results returned and this magic indicator had trebled since yesterday. To save the fuss of going home only to rush to A&E in the middle of the night it was decided to admit me then and there.

The Day Room that I usually only spend 20 minutes in slowly cleared, fellow patients heading home as I waited for my bed. On occasion a slightly mad woman would wander in, once to weigh herself whilst mumbling, or to get some water. Still mumbling. It turns out the mumbles were due to her being evicted from her private room and onto a noisy ward full of people groaning and making noise.

Now that I am in that private room, I can see why she was annoyed. It's clean, quiet and warm. Far better than a ward any day. There's a fridge, an loo of my own, no one is going to nick my stuff, and I'm not going to wake up with any mad folk looming over me in the middle of the night.

With copious amounts of saline and anti-biotics dripping in to me I'll be here all weekend and possibly most of next week. Hopefully this action now will stave off any real suffering later on, only time will tell.

My uncharacteristically feisty end to yesterday's blog was soon brought down as, late last night, my body temperature went over 38 degrees, a sign of possible neutropenic sepsis and a sign that a visit to A&E is on the cards.

Having dug the car out of the 4 days of snow surrounding it we made a slow tentative drive over icy roads to the hospital. A&E was reasonably empty, populated by a handful of 'blokes' bleeding from various places getting mawfy wiv each uva.

Thankfully I get elevated to the top of the list and was in triage in minutes leaving the bloody, vomit ridden waiting room behind. Blood was taken and then I was found a bed in a cubical whilst waiting to be assessed. Eventually a gung ho doctor appeared whose ability to do anything involving the addition or removal of a needle was, quite literally, painfully flawed. He soon handed over these tasks to a far more competent nurse whilst concentrating his efforts on diagnosis and bossing others around.

It was a four or five hour process while blood results were waited for, x-rays were taken, in a bid to find the location of the infection. None could be found and once the blood results came back I was seen, thankfully, not to be neutropenic. That is to say I still had some immunity in my system. As a precaution is was given a paracetmol drip and a saline drip to bring the temperature down and help hydrate me. Meanwhile I sat, cubical curtain open, watching the frankly terrifying world of late night A&E cases drift past.

Alcohol induced injuries, illnesses and, in one case, psychosis all floated past my bed. At one point a teenage girl was being sectioned whilst, in front of me, a old woman who had slipped on the ice and broke her hip struggled through a haze of senility to understand why she was in pain and why her family weren't there to explain things. Doctors it would appear had been failing to get her to consent to an XRay and she'd fought them off as they tried to get her on the table.

I can see that I am now at the point in my treatment where, as expected, things are going to go downhill. It's going to be worrying and uncomfortable but for all the diffuclties I am going to enounter I'm aware that there are people out there living far more uncomfortable lives, some for all of their lives, and of all the people being treated last night I am glad I'm me.

The jab into the left arm was fine, the one into the right sent an odd sensation down my forearm. Not pain as such but oddly uncomfortable. It soon passed but clearly, in that arm at least, the drugs were flowing into my system quickly. Theme of today has been tiredness.

Tiredness and snow.

Both feature highly amongst the endless glasses of water and pill popping.

I was slightly concerned that my drugs, delivered to the hospital every day from North London, might not make it through the snow as the country crumbled under a mild dusting of seasonally expected frosting. Either that or it would be just me and the drugs in an empty room bereft of someone to administer them. Happily this was not the case and whilst some of the other, considerably older, visitors to my particular ward had stayed at home, putting off transfusions for another day when they were less likely to suffer a broken hip skating across the hospital car park, both my drugs and the nurse to administer them were present.

The Haematology Day Unit is a particularly serene place in the heart of an otherwise bustling section of the hospital. A sixth floor room, nestled between two wards, with full height windows looking out over the local town and on to Richmond Park. Here, as doctors as nurses scuttle passed outside, the inhabitants merrily discuss the lunch menu, the inclement weather, and how posh it they felt when Camp Coffee was introduced during the war to plug the gap in place of dwindling tea supplies.

Without doubt I am half the age of anyone else attending.

Run with efficiency by an always cheery nurse everyone present gets their drips, plasma, and drugs administered in what ever way needed. Gaps in the drip changing schedule and trips to the pharmacy are filled with a tea round or two. Come Friday I'm tempted to take in some biscuits to top off the pleasant air and fill any gaps left by the often lack lustre offerings from the hospital kitchen. Whilst my visits are quick some of my fellow inhabitants are there for the day, I'm sure a Custard Cream or two will help them through.

With my injections done and a cup of coffee had I headed back home through the snow. There are still no ill effects to speak of aside from the arm thing and a headache above my right eye just after my jab. It felt like the brain freeze that, ordinarily, can only be achieved my sucking too hard on a McDonald's milk shake. It soon subsided and is probably not related to the chemotherapy at all. I'm at the point now where I am mentally on the lookout for every ache, pain, twitch and itch that might be the start of something more severe.

As I write more snow is forecast for tomorrow but thankfully my drugs for the rest of the week have already been delivered. There's nothing to stop me getting to the hospital and the nurse indicated a dogged determination not to let her patients down so all being well my therapy will not be snowed off. Tomorrow is when my neutrophils should really start to drop. Bring on Day Four!

Day Two is pretty much over and I still feel fine. Both of my hopes from
yesterday came to fruition with a lovely clear, albeit frosty, morning
AND FedEx delivering my blood to NIH on time. It was a slow walk up to
the hospital for no other reason that my better half is now 7 months
pregnant. The distance is not great but we had to leave home with enough
time for a slow waddle to the other side of town.

Once there the process was simple: a jab into each arm and the deed was
done. Both arms ached for ten minutes or so after the injections but it soon subsided and after a coffee we meandered back home. Encamped on the sofa in the warm I sketched out my drug timetable to keep track of the variety of pills I now need to pop each day. With my immune system set to take a serious dip in a day or two I need to medically kill off any possible infections lest I end up in A&E.

Currently in my 'bag of meds' I have:

Aciclovir - A general anti-viral drug aimed at cold sores, shingles,
chickenpox, Bell's palsy, and a lovely collection of various types of
herpes. Any of which I could certainly do without. One pill to be taken
at regular intervals four times a day, every day.

Cotrimoxazone - A general anti-biotic aimed at Listeria, Traveller's
Diarrhea, and load of things I've never heard of ending in '...osis'.
One to be taken three times a day although only on Monday's, Wednesdays,
and Fridays. Never before have I ever had a pill that only works
part-time.

Domperidone - Sounding a lot like a top end champagne it is nowhere near
as enjoyable. It is an anti-nausea pill two of which can be taken up to three
times a day that ironically tastes absolutely foul. Nauseating in fact.

I'm holding off on the Domperidone until sickness sets in rather than
take a drug I do not need; I think there's enough of a chemistry set
rattling around in me for now.

The only other thing I need to take is water and lots of it. Whilst my
liver is working overtime to break down the cocktail of drugs I'm
ingesting, my kidneys need as much help as possible to flush out the
Hairy Cells that will soon be dying off, hopefully in great numbers. To
offer some assistance I need to drink, I'm told, six pints of water per
day.

This I am managing but I think I am beginning to slosh when I walk. I
have never been quite so hydrated or had to visit the loo quite so
regularly. If frequent peeing is all I have to contend with throughout
this treatment then frankly I'll have got off quite lightly.

Day one and as the rest of the world headed back to work we battled through the frost and headed up to the hospital. Just before Christmas a great deal of effort had been put in by many to get samples of my blood to the National Institute of Health in Maryland, USA. Everyone at my hospital put time aside in their busy days to do their bit and the tubes were filled and packed off on their way to an expectant team at NIH. Somewhat annoyingly Federal Express managed to make a complete hash of the ‘next day’ delivery so by the time the tubes finally arrived at their destination the samples were useless and by then we were into Christmas.

With the multitude of Bank Holidays that we’ve had of late today was the last, eleventh hour, opportunity to get a replacement set of blood taken and shipped so first on the agenda was a good deal of bloodletting followed by a tense and nervous wait in the coffee shop at the main entrance waiting for the FedEx van to arrive.

It was always going to be something of an odd day but it’s strange that my biggest concern was whether or not FedEx would manage to achieve the simple task of putting a box on a van, then a plane, then a van. Much to our surprise they accomplished the first step in a timely manner; tomorrow will tell whether they managed the rest.

Having dispatched some of my blood on its international adventure, the time came to treat the rest of it to something else quite new. Given the severity of my disease and its treatment at a cellular level the process of chemotherapy was oddly painless and without fuss. Cladribine used to be delivered into the body via a drip taking a few hours every day for seven days, medical science has moved on and the drug is now introduced to the body in simple subcutaneous injections over 5 days. Not unlike getting a flu jab: tiny needle; over in seconds.

Each day’s dose is split over two injections, in my case one into each arm although apparently abdomen was also an option. After a little consideration I couldn’t see any real advantage in the latter, and passed on the opportunity to strip off in a room full of others already with enough ills of their own.

And so it was, two small jabs and the job was done for the day. Resting up on the sofa thus far I feel fine, this is however only Day One. I’m advised that day’s seven to fourteen hold the potential to be the worst. One day at a time though.

For tomorrow I have only two hopes: One that it’s a dry enough for the morning trip to the hospital to be on foot, the other is that a box of blood arrives in a timely manner on someone’s desk on the other side of the Atlantic.

A new year, a new decade. 2010 was welcomed in a sedate manner: the two of us clinking glasses of water whilst watching the various firework displays being launched from neighboring gardens.

The week since Christmas has been a quiet affair, recovering from the excesses of food and drink consumed. The annual mid-winter feasting followed by the traditional detox, lots of fruit, vegetables and water this week as I try and ready myself for next week's events.

There is a heightened sense of nervousness in the house at the moment. Most days come and go quite normally but nights pass in uneasy dreams. Although not working I still set an alarm so that I can make the most of each day. I may not do much but at least I am up; about; awake.

Time is spent readying the flat for the new arrival due in March. Work that I know I will not be able to do in January and whilst I hope to be back on my feet by February that short month will be over before we know it and suddenly a crying, kicking, poo factory will be wanting somewhere to sleep. The ‘baby stuff’ is already being put to good use, a sterilizing bucket sits in the kitchen with cutlery, mugs, etc. for me to use once I have no immune system and we’re readying the antibacterial wipes to attack door knobs, light switches, keyboards and mice.

Planning for and talking about the time post-Chemo is the only way to stop ones mind from dwelling on the worst of the possible outcomes. We’re in an emotional quicksand at the moment: to keep moving forward, looking at the future is the only way through. To stop and dwell on my plight will just cause us to sink, the going will be harder and the outcome less bright. Excitingly most sentences start with the phrase “Next time we do this there’ll be a little one with us!”

Christmas gifts of books and CD's have been readied in the lounge. A pile for me to work through whilst I rest up praying that tiredness and nausea is all I have to contend with. I’m grateful for the glut of classic films on at this time of year. Battle of the Bulge being the recent highlight whilst I cupped endless mugs of tea, rain lashing against the window outside. I’ve also compiled a collection of old Western’s to see me through the days when I cannot go out. A happy reminder of ice cold Sunday afternoons at my grandmothers house when I was growing up. No heating, huddled around a tiny fire, watching cowboys on the telly whilst we ate jam tarts.

I had my final pre-chemo consultation yesterday. It was a bitterly cold yet thoroughly refreshing walk up to the hospital and then the usual routine of bloodletting and people watching in the waiting room. A good book is essential as appointment times seem to have a natural drift to them and are dependent more on the backlog of bloods in the lab than the time you report for duty. My current treatise is the thoroughly relevant “Bad Science” by Ben Goldacre and I highly recommend it to anyone, Leukaemia sufferer or not.

11:30 is the time it will start, or thereabouts once forms have been filled in and, no doubt, more blood taken. I fully intend to continue this blog as the treatment progresses but it is highly likely, I am told, that I will be admitted to hospital at some point so do not take an apparent cessation of writing to mean the worse. It is more likely that I am either very tired or failing to get comfy in a hospital bed and unable to commit my thoughts to the world wide web.

Happy New Year all; it’s going to be an interesting one.

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.

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.

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.

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.