Hairy Cell

2011-07-16T22:28:00.001+01:00

It has been a week of nausea fill days and sleepless nights. The six monthly check seems to come around so soon and it brings with it the angst of waiting for exam results multiplied a thousand times. Life starts to slow as I put things on hold not wanting to look ahead too optimistically, waiting to see if the outcome will curtail any immediate plans.

The sun beat down for the lunchtime walk up to the hospital. The routine is now well rehearsed. I have a slot booked with a consultant but must have blood taken first. You don't need to book for the blood letting you just turn up and at some point they'll take what they need and then sometime later will send it to the lab. The lab, in turn, also don't have you booked in so process it when they can fit it in around other more pressing demands.

The problem then is that if you turn up at your allotted time and only then get your blood taken, you miss your slot with the consultant. Resulting in a wait to fit into a slot between other appointments that can only happen once the lab have turned up with your results.

The natural way round this is of course to go really early to get bloods taken and take a leisurely walk to the consultant's office. This I have tried and even made time for a long lunch between the needle and the chat. This backfired with the lab assuming, given how early I was, that my bloods weren't for the Thursday clinic and put them aside whilst they got on with the stuff that came in later.

On that occasion I ended up being at the hospital for four hours. With Emma accompanying us this time so that was a wait we did not want to face and practice saw us time the blood taking and the arrival in the waiting room to perfection whilst fitting a sandwich in between.

Delighted by the box of well worn toys in the corner of the bright, airy waiting room Emma kept others amused with babbled talk of "car" and "book", as well as repeatedly feigning no interest in the stairs before then running at them to climb.

The waiting room was not as busy as usual, recent cancer treatments are either going very well or very badly, and I was seen bang on time.

Nervously we all made our way to the consultants office and pulled up some seats. The announcement was quick and delivered with a cheery smile. My bloods were good. Very good. As good as anyone without a history of Leukaemia could hope for.

The relief was astonishing and, pleasantries exchanged, we soon found ourselves back out in the sun phoning relatives and texting the news.

later the 'no drink on a school night' rule was abandoned just this once.

It is such an odd ritual to go through; the wait and the fear. Whilst Cladribine can offer some very long remissions there are those that relapse quite soon. In my mind I'm aiming for five years but it is an idle hope and something that I have no control over as far as I can tell.

The signs for now though are good. Perfect bloods and no symptoms. I'll keep eating well and pounding the treadmill if not to keep it at bay then at least to ensure when it does return I'm ready for the fight. in the meantime there is lots of stuff to plan.

2011-07-16T09:01:00.004+01:00

Please sponsor me to walk a marathon at night for Cancer Research UK. There is still so much more to do.

Click HERE for more information.

2011-07-03T21:25:00.003+01:00

I don't like to beg, but I'm going to.

I'm not going to rattle a tin in your face as you try to make your way to work and I am not going to accost you with a clipboard as you try to get on with your shopping. I'm going to walk. In a very large circle. While you're asleep.

In the years since being diagnosed with Leukaemia I've been the recipient of a great deal of good will whether through colleagues donating blood, or care and support from charitable organisations who fund research, nursing, and counselling.

Since 2009 I have made a concerted effort do donate to cancer charities and organisations when the opportunity has arisen. The time has come though, I feel, to go out and play my part in earning some of that generosity.

In October this year I am going to walk a marathon at night in aid of Cancer Research.

At first I thought that, compared to some of the bike rides and runs I could have opted for a walk would be relatively easy. I walk between my desk and the coffee machine at work a lot every day. I walk around town at weekends. Walking is just walking. 26 miles is just a bit more of it all at once.

The more I thought about it though, after I had signed up, the more I realised how much of a task this was likely to be. The time needed to do it is likely to be greater than the amount of time I'd ordinarily be spending asleep. The distance is similar to the distance I'd hike for Duke of Edinburgh awards in my teens but that would be spread over a whole weekend with stops for food and merriment.

Since signing up the number of conversations I've had about appropriate footwear and anti-chaffing under garments has made me realise that this is going to be a bit more arduous than the last sponsored walk I did age seven in my Primary School playground.

The effort it will involve, I think, sits well with the disease I am walking for. Leukaemia, like many cancers, is not a fast run thing. It is a slow hard slog.

It is waiting. It is slow treatments. It is drawn out pain. It is lengthy sickness. It is weeks or months of recovery. And if you're lucky, it is years of watching, waiting and testing to see if it returns.

I cannot think of a more appropriate metaphor for dealing with cancer than an extraordinarily long walk through London, at night, in the cold.

You have all supported me greatly already through hugs, gifts, help, time off, talking, emails, or just through reading this blog. I am eternally grateful for all of this but I'd like you to give me just a little bit more. I'd like you to donate just a little bit of money so that when it comes to it, on the 1st October this year, I know I am walking a bloody long way for a reason.

The money I am hoping to raise will go to Cancer Research. It cannot be stated enough how much of an impact charitable giving has on the research required to help people like me live longer. The drug I was treated with was first developed at a University funded by donations. The treatment has been refined over the years by no- for-profit organisations. As recently as last month research funded by charity has identified a single genetic abnormality linked to Hairy Cell Leukaemia. This is a massive step and similar steps are being made in research for other cancers every year but the job is not done yet. We are a long way off from a cure.

I'm going to give some of my time, I'd like you to join me in giving some money, and in return some very clever people, who you or I will probably never meet, will work tirelessly to try and save either my life, the life of someone else you know, or even you.

For the sake of a just a few pounds from you and astonishingly sore feet from me this seems like a pretty good deal.

As is the norm these days you can sponsor me online...

http://www.sponsormetoshine.org/hairycell

..or stick to the more traditional route of handing me some money in person.

Be sure to make it clear though why you're giving it to me lest it gets used to purchase some comfy trainers or some anti-chaffing pants.

2011-04-14T00:05:00.001+01:00

It is easy when you’re either single or just a couple for time to pass so quietly that it seems not to pass at all. Week days see the same tasks carried out and every weekend the same past times are enjoyed. Days, weeks, months and even years can pass and one never really feels any older. Jobs may change; careers may advance but inside you feel you are you. Seemingly ever young with nothing to make you think otherwise.

I now find that once children come along, amongst everything else they bring, the rate they advance becomes an absolute and daily reminder of just how fast time passes and how quickly we get older. It has been a year since my little girl was born and it is a year that has flown by. Her birthday marking not just her arrival in the world but also the week I was released from hospital following a month and a half of post-chemo suffering.

The year has been one of indulgence although not to excess. I’ve enjoyed every moment possible with my little girl. I’ve concentrated on doing the things I enjoy and abandoned those I do not. And on the matter of food I’ve eaten whatever I’ve wanted. I figured that with the combination of leukaemia related weight loss and over a month of hospital food I could afford to put on a few pounds and that I have. I’ve not gone overboard, I’ll confess to feeling no qualms about occasionally indulging in a second piece of cake but I’ve always been reasonably healthy and I enjoy a massive salad as much as I do a burger. Everything in moderation as they say.

Recently though I’ve decided that I need to pull myself out of this torpor and get back into training. Aware now how fast time is ticking and with low platelets on my last blood test I know that all too soon I may find myself back in hospital having chemo and fighting off whatever that brings on next time. When I get there and the treatment knocks my health down I would like to at least be starting from a pretty good position. And so this month I shopped around and joined a gym.

I’ve been a gym member before. I joined my first in my late teens. It was a small local place populated with guys who seemed to spend every waking hour drinking tuna milkshakes and exercising their upper bodies so much that they turned into massive piles of muscle set atop tiny spindly legs.

More recently I spent a year as a member of one of these new plush chains of gyms but eventually the exorbitant fees and lack of any proper cleaning or repair led me to leave. I was a member of the local YMCA gym in the run up to my diagnosis and used it regularly and had put down my inability to make any real progress with my stamina too not being as young as I used to be; unaware of my dwindling platelets and ever growing spleen.

This time I’ve joined the local leisure centre. It is affordable, no frills, and I figured that local services could do with my investment. My training has started and whilst for the first few sessions I felt I’d get more from just running to the gym and back without paying to actually go in, things are starting to change. I feel as though I am using all of my lungs again. I mean the full depth you get from filling them through exercise rather than the little bit you use in a typical loafing and sedentary lifestyle. And I just feel a lot better in myself.

In addition to the physical benefits I had hoped for I hadn’t really counted on the mental. The regular exercise really lifts the spirits and I find myself getting low and dwelling on this all a lot less often when I work out at least a few times a week.

This is all part of what I call my “one more day” plan.

Previous efforts at the gym have always been to get fitter, to look better; a purely cosmetic aim. This time it is very different. I do not expect the exercise to stop the Leukaemia coming back but what I do hope is that I can stay fit enough to see off any more treatment I have to go through. The real aim of all the work is to buy myself at least one more day with Emma. It is that thought that drives me each time I up the speed on the treadmill, squeeze more metres out of my row, and add another weight to the bench press.

“One more day”.

2010-10-07T09:28:00.003+01:00

It is a year ago today that, around lunchtime, I walked into our CEO’s office and said “I’d like to go home; I’ve just been told I have Leukaemia.”

It was already turning out to be a busy day cramming work in so that the following day I could take the morning out to attend our baby’s 20 week scan. Of all the curve balls that come my way on a working day this was one I was not expecting.

I guess that relative to many cancer sufferers the time from my diagnosis to being told I am in full remission is pretty quick, particularly given that my treatment was on hold for a good three months and yet conversely the last year seems to have lasted a lifetime. That three month wait probably doesn’t help.

As autumn arrives laying a cold damp blanket across the country I am looking forward to spending time outside, walking through piles of fallen leaves and spending occasional evenings tucked up in a warm pub packed with others sheltering from the inclement weather outside. From this time last year I was confined to home lest I met anyone who gave me so much as a cold that might kill me.

This year I fully intend to immerse myself in the cold seasons; to be with people.

Meeting people recently I am frequently told how well I now look. Looking back on the few photos that survived my attempts at deletion I can testify as such. Thin, pale and gaunt in hindsight it should really have come as no surprise that something was deeply wrong.

Since leaving hospital in February I’ve certainly gone up a few belt holes and clothes bought just before I was diagnosed no longer fit as they should. I am sleeping much better of late and it is over a month now since I had any dreams of being in hospital, of being treated, of needles in my arm.

I find it a little scary at times not having the constant check-ups. For all the discomfort of being in hospital the daily routine of tests and scans brought with it a sense of security. Reporting the slightest change in symptoms brought waves of tests, studies and consultations. I felt safe in the knowledge that should anything be found to be abnormal I would be told right away and it would be treated and addressed. The most complex decision I ever had to make was what to choose for dinner.

At least slightly institutionalised I sometimes miss that safety net and worry about aches and pains that are most likely symptoms of nothing more sinister than sitting badly at my desk all day or tiredness that is caused by nothing more than being a father. Statistically HCL sufferers have a fifty per cent increase of developing a secondary cancer in the first two years following treatment. Only after five years of remission do chances of normal life expectancy begin to appear and I feel that, in spite of the good news, I am still very much in the woods

Not a day goes by when I don’t worry about dying of cancer and this is a cycle I need to break.

I keep telling myself that this is all just statistics. That my fear is only great because this is still such a recent event and that a fifty per cent increase in the chances of getting secondary cancer are an increase on an already small margin not a fifty per cent chance in itself. Readers of Dan Gardner’s “Risk” would tell you that. My pessimistic side counters with the observation that the chance of me getting HCL was also infinitesimally small as to practically not exist and yet it happened. And so the debate rages in my head. It is difficult at times not to descend into a quiet spiral of worry and when I do it can take a good few days to climb out. I am yet to find the thought, word, or phrase that pulls me out early.

In the meantime I crack on with work. My job has changed over the last few months, a lateral career move oddly into a position where my deadlines are much more immediate; the view less long term. I wonder if it is purely serendipity or actually a subconscious move on my part to no longer need to look to far ahead.

I love the job though and as a distraction from the background fears it is seconded only by the greatest joy in life that is my daughter. The change in my life over the last year is as much about her as it has been about Leukaemia. With every day that passes the joy she brings more and more eclipses my fears of shortened life expectancy. Every new thing she does that I witness is a gift, an event that without very recent advances in treatment I’d simply never have seen. She is the absolute reason to get up every morning and the reason to keep on working and to keep on fighting.

2010-07-16T21:49:00.009+01:00

We slowly worked our way through a post dinner bottle of champagne as we gorged on a few episodes of West Wing on DVD before finally retiring to bed; Emma well fed snoring in the adjacent room. A thoroughly relaxed evening contrasting with the start of the day.

Taking a nervous break from the working week Thursday afternoon saw the return of the judges verdict following my BMB a few weeks ago. The results were in; the votes had been counted; my ordeal was over. For now.

The bone core sample, the marrow, and the marrow aspirate show no signs of any hairy cells. I am glad that it was the consultant that had seen me through most of this that was there to tell me, along with the fantastic nurse that runs the day room and who had given me my chemotherapy.

There is little I feel I can say at this point other than I am glad it is all over. It has been a nervous week as today approached. Not knowing whether it would be good news or whether we would be planning another round of chemo in a bid to knock of the last of the hangers on. I hadn't let myself consider the possibility that it would have been a complete success. Instead wondering how long I would be in hospital next time, and whether the next round of treatment would fit in with various holidays and work trips planned for the rest of this year.

I spent some time wondering if I should have been more careful over what I was eating. Should I have abstained completely from alcohol. Numerous books would suggest that this is imperative yet medical science suggests otherwise. For my type of Leukaemia there just isn't much you can do at a dietry level to bring it on or send it packing. I eat pretty healthily anyway and just had the odd glass of wine here and there. Any more would have put my liver under pressure, giving it more work to do on top of sorting out all the drugs I have been taking.

Friday morning was the first this year where breakfast has not been accompanied by a cocktail of three different pills. Last night the thought "shit I forgot to take my drugs" flitted briefly across my mind as I realised it was a habit I had gratefully been allowed to kick.

My next checkup is in January. I'll be having bloods taken and tested every six months now until the Hairy Cells come back and there is a pretty good chance that they will.It may be one year, it may be ten. Remission times can be long for this cancer and, fingers crossed, there will be even better treatments by the time I have to take my next turn.

Until then this blog will cease to become the major part of my life that it was when my Leukaemia was around. It has been just under a year and yet the whole thing seems to have taken years. It really has felt that we have all been dealing with this all our lives.

I would like to thank all of you who have read this blog, be you family or people I am yet to meet, who have sent emails or messages of encouragement through friends, family etc. they honestly have made it easier to get through. There are family here in the UK, friends living or travelling abroad, fellow suffers around the world, and students in places as far flung as South America who have stayed in touch an accompanied me on this ride.

Thank you all. And please feel free to keep in touch.

I will add to this blog as I have new thoughts on my ordeal. As I find new things that those coming up behind me on the same path may find of use. And possibly as my health changes and I begin the next round of treatment in many years time. Until then life is back to normal. Emma is nearing 6 months old and is an absolute joy. Such a bright little person she has got me through this as much as anyone and has been what the fight has all been for. I hope to see her do a lot of growing up before I have to go through all of this again.

For those who have stumbled across this blog because they have just been diagnosed or those who are in the best of health I just want to say make the most of what you have. It is hard to live life to the full and until something like this happens you never really appreciate how fragile this all is and how quick it can all be gone. There have been a lot of song lyrics that have helped me along this road but one in particular has been an internal mantra on bad days or days of doubt and for now I shall leave you with that.

Good health to you all; and thank you.

"We’ll be washed and buried one day my girl

And the time we were given will be left for the world

The flesh that lived and loved will be eaten by plague

So let the memories be good for those who stay"

– Mumford and Sons

2010-06-23T18:03:00.001+01:00

I have just had my first shower in two days and that's only because I have been pooed on quite violently. Having spent Sunday suffering from a completely unrelated stomach bug, the symptoms of which Emma now exhibits with great abandon, I spent Monday afternoon, still nauseas, having a Bone Marrow Biopsy. The second of my life but the first I planned to sleep through.

I had barely sat down before I was tagged and a cannula was in my arm. Just over six months on from finishing my chemo it was time to see whether or not the effort had all been worthwhile. The cannula felt so normal; an almost welcome addition to my arm. Thoughts of all the other injections, lines, scans, jabs, pills I have had came flooding back. It has only been six months but it feels as though we have been going through this for years.

The procedure was to be done in the 'Day Room' where oh so many months ago I had been given my chemo. It was relatively quiet in there with only one patient on a drip. A small bed was prepared in the corner and as the time got close a small screen was erected so as not to add to everyone else's woes by having to see me drop my jeans and curl up, arse out, on the bed.

The process is relatively simple: having cleaned a small area on the back of my hip a large, very hard needle is inserted through the skin and flesh and into the bone. This is used to take some aspirate - a liquid portion of bone marrow. With this done a thicker needle is used to take a hard core of bone marrow. Slices of which i believe are placed on slide of glass for viewing under a microscope.

On the advice of pretty much everyone I spoke to about it I had this done under a general anaesthetic. I do not remember my last BMB being particularly painful as such but I do recall a lot of swearing and it being very, very uncomfortable. And so it was that, staring at the wall, I was given first a pain killer which made my eyesight go blurry and then another jab to put me out. One I am pretty sure was not working as I continued to stare at the wall listening to people clattering behind me as 'the area' was swabbed.

I was about to point out that I was still awake when all of a sudden I was sitting up on the bed and everyone had gone. Only my wife and one of the nurses remained. There was a dull ache in my back. I do not know how long I sat there and I cannot remember whether I was fully dressed. For some time after, hours even, I kept asking the same questions and telling people the same things I had told them only minutes before.

Apparently during the procedure I had wriggled, kicked my legs, and moaned about how painful and uncomfortable it all was. I recall none of this even now. I am not so sure if the anasthetic did not so much make me unaware of what was going on but just made me instantly forget everything the instant that it happened.

Memories of the journey home are still patchy and the only evidence I had to show of the ordeal was a tiny bloodied dressing that had to stay on and stay dry for 48 hours. Having to wash at a sink rather than shower brought back memories of washing in my isolation room and this morning we attempted an "upside down shower" where I hung over the edge of the bath and my wife helped wash everything above the dressing which was, in that position, now below the dressing. There was simply no way I could go to work in this heat without something bordering on a proper shower.

My memory is back to normal - just averagely bad - and the affects of the stomach bug have pretty much passed. It has reaffirmed my idea that any day is a good day if it starts with a shower. My only regret is that I didn't have my Blackberry in my pocket when Emma let loose. At least then I could get a new one.

2010-06-10T21:47:00.007+01:00

It has been a long time since I went to hospital and an even longer time since I've posted anything on this blog. Understandably my readership has dropped to zero. It is now just over five months since I stared my chemotherapy; four since I last left my isolation room only days later becoming a father.

Little Emma has helped life get back to normal very quickly. I frequently go for days without thinking of leukaemia, chemotherapy, blood tests, and neutropenia. Nappy's, baby milk and a never ending quest for a full nights sleep now take precedent. The one constant reminder is the daily pill intake which has become so normal it is like popping vitamins in the morning. At a rough count I think I've taken close to 500 pills since the beginning of the year. I appear to have suffered no real side effects, my liver is holding out, and the once massive stock of pills has now dwindled to the tail end of a lone blister pack and a few chalky tablets rattling around the bottom of a large bottle. Today I was hoping to officially end this daily ritual and begin to enjoy an even more normal existence.

Apart from routine visits to the hospital for Emma's sake I have only been back once on my own account. On that occasion bloods were still low but on the normal route to recovery, there was so little of note that I did not bother to post anything here as it would have descended into a rant about my continued bemusement that a clinic that starts at 2pm can already be running an hour late at only 2pm. The oft touted excuse being that they are over booked, which I take to be another way of saying they are terribly under resourced. The staff that they have are brilliant, but they clearly need a lot more.

I awoke today with a sense of nervousness and worry. Not for anything in particular as there was only a blood test in the offing, more just a feeling that I was being dragged back to reality. A reality that I had worked hard to forget or at the very least ignore. Over time you do accept the diagnosis and over time you just learn to live with it; I assume its the same with any disease. I guess if I am honest its a form of grief, but oddly a grief for one's self.

Repeatedly going to hospital at the beginning of the year was a bit of a roller coaster ride in the sense that I just had to hold on and go along with it. It was easy to detach myself from it because it all seemed so unreal. Going back after such a long break brought back not the surreal atmosphere of endless blood tests and isolation rooms but oddly the feelings of the week when I was first diagnosed. Loss; depression; anxiety.

After a morning of work with butterflies flitting around my stomach we made our way as a family up to the hospital. Bloods were taken as usual and we made our way to the waiting room. It's one of the oddest places to be. Other parts of the hospital seem to bustle where people have to wait. You can pass areas full of people with legs in plaster, kids being corralled together so as not to get in the way of old people being pushed around in chairs, relatives lost trying to find a particular ward, or having been to a ward, their way to the exit. There's a certain hubbub about most places except that is the cancer wing. The waiting room is always silent in spite of the fact that there is usually only standing room; the thirty or so chairs all taken. Everyone knows why they are all there. They all have something massively life changing in common, and yet in a terribly English way no one mentions it. No one says a thing.

The silence was only punctuated today by occasional squeaks and grizzles from Emma. We are both thankful that she didn't fart. For such a small girl she can make quite a thunderous noise when it comes to air dispersal.

The room is populated mainly by elderly people who you know now know what it is that is likely to see them off. Interspersed amongst the crowd are obviously much younger people, myself included, who look around and wonder if they will ever be so lucky to ever be so old. It is a very solemn place.

Eventually I was called and was seen by a consultant I hadn't met before. Clearly they are slowly increasing staff to meet demand and he was a bright friendly guy. He knew my history without pouring over his PC and even said "Ah you must be Emma" as my wife carried her into the room with us. You had to hand it to him he'd clearly done his revision.

My bloods from today are, apparently, pretty much normal including the levels of white cells particularly hit by chemotherapy and an indicator of bone marrow health. Not much more could be concluded though without the dreaded BMB which he would have reviewed today were it not for the fact that the bone marrow extraction has been scheduled for two weeks after this review meeting.

And so it was we returned home. I am still on the antibiotics and antivirals while we wait to see what the bone marrow can show with regard to recovery. The pill popping is to continue and I have a new bag of drugs sitting in the kitchen along with all the other breakfast items. I've opted for a general anaesthetic for the biopsy in two weeks time. I know it sounds chicken but I've had it once before without the aid of sedation and whilst I am sure it is not the most painful thing a man could endure it is staggeringly uncomfortable and I think I have had my fair share of suffering this year. Besides I could really do with the sleep.

2010-03-02T22:29:00.000Z

There just simply hasn't been the time to write. For that I apologise.

Each day I swear that I am going to update my blog and then come late evening the time to do it has passed and I retire to bed. The last time I wrote I had just been let out of hospital for the second time and was close to becoming a father. I have recently begun to receive emails from friends tentatively asking if all is well with me or the baby, wondering if the radio silence is an indication that somewhere something has gone wrong. An update then is long overdue.

Two days after my release from hospital, popping hundreds of pills a day, my temperature spiked and I nervously called the hospital to see what they thought. I felt fine during the day but sweats still plagued my nights and along with this feverish temperature they decided to call me back in. On the Friday I was put back in my room and taken off of all medication. The plan being that what ever it was would be allowed to come to full strength and during a shivering, sweating fit, bloods would be taken and cultures made so that they could nail this infection for once and for all.

And so in my room I sat. I slept; I read; I watched the start of the winter Olympics; I persuaded the nurses to bring the leftovers of meals to me rather than binning them and thus enjoyed massive portions of lasagne; I felt no increase in symptoms; I watched the cannula in my arm slowly block with blood as it went unused.

Come Monday morning doctors arrived ready to inspect the samples taken from the weekend and were confused to find no record of anything being taken. On finding that nothing had happened, that I had not descended into a feverish hell whilst not on any medication they took some blood to check the infection markers. I felt great and the bloods showed that, unaided, my body was fighting off the infection on its own. I still had a way to go before they would be normal but feeling great I was discharged. Thoroughly rested and ready to face the world.

The weekend inside had been worth it as far as resting was concerned and I felt ready to think about returning to work. From that Monday I also had only ten days before our baby was going to be delivered so I planned a week of working from home, followed by a weekend of finishing the nursery. Those plans were soon derailed as the date for the caesarian delivery of our little breech was brought forward a week and only three days from my release from hospital I was back inside. This time though as a visitor. Sitting in an operating theatre chatting to my wife whilst our baby was fished out of her tummy. At exactly thirty nine weeks Emma came screaming into the world weighing in at a slight five pounds she is small but absolutely perfect.

From then on there simply hasn't been the time to write. Paternity leave over I am now back at work pulling full days, every day. Evenings and weekends are spent cuddling or just gazing at our new born baby. Although a lot is new I feel like I am living a normal life again: The morning commute; a day at my desk; the coming home to a family.

For the first time in nearly six months Leukeamia is not constantly at the forefront of my mind; Living has taken over.

2010-02-10T17:04:00.007Z

I gave them my "Rehabilitation's just a word" speech, and told them "just to go ahead and stamp their form" but stopped short of calling them "sonny".

As the day wore on yesterday rumour was in the air that I was on my way out. First the pharmacist popped in to see what drugs I already had at home so that they would not have to give me a completely new batch when I left. Then the nurse that runs the day room where I had my Chemotherapy popped in to say what good news it was that I was going, but still at that point my doctors had not said that I was going home.

My release had been rumoured over the previous few days but there had been nothing confirmed and sometimes hospital administration can move pretty slowly so I was not going to get my hopes up. Having spent just over a week running endless tests on my blood whilst filling me with antibiotics the medical team working with me had succeeded in removing all of the symptoms that I had come in with but, much to their disappointment, had failed to isolate the cause.

I am pretty sure that, determined as they are, if they could they would have kept me forever until they finally, finally, put a name to what ever it is that was in me. HCL patients quite commonly get fevers and infections post-Chemo that often go undiscovered and I am pretty certain my team would like to have been able to say they had found what was eating me and maybe point the way for future investigations. This time though it was not to be.

Although I have been allowed out, I am not in the clear just yet.

Physically I feel fine although I have become far to used to frequent napping and need to wean myself off of that particular luxury. I do not ache and I can breathe normally. There is however a 'marker' in blood tests that can show whether the body is succumbing to infection. CRP or C-reactive Protein is made in the liver and its level in the blood rises in response to inflammation mainly at the site of infection. The normal level for CRP is "up to 10" my level is currently 116.

The argument is then that there is still a significant source of infection in me and there is a strong possibility that, now I am off of the intravenous antibiotics and bumming around at home, it will slowly cause me to exhibit more symptoms to the point where I have to readmit myself to hospital. At which time they will culture everything and begin treatment once they have put a name to my pain.

There is the more optimistic possibility that my CRP will continue to drop. That no infection will rear its ugly head, and that given a week or so I will feel more confident that I am not going to relapse and I'll start looking forward to things rather than dreaming of blood tests, hospital food, and cannulas in my arm.

I need this infection not to happen again as time is now very tight. Fourteen days from today I am going to be a father and I would dearly like to be welcoming my offspring into the world as a normal human being rather than a fellow inpatient.

We cannot have all three of us in hospital pj's at the same time. That would just look silly. Although if it happens I will post a photo.

2010-02-04T21:22:00.002Z

I should have written sooner. Much sooner. To leave my ongoing tale with a full body CT scan looming on the horizon and then not utter a word since is pretty bad form. It is not that there have been so many crises to deal with or that there has been news that has been simply to bad to bare. If I am honest with you I have been doing an inordinate amount of sleeping and although my fever has begun to dwindle one of the times it does flare up is the same time of night I prefer to write and of the two activities laying in bed and burning up always wins through.

The scan went ahead on Monday and my early hopes that I would not have to drink that terrible liquid again were soon dashed as two bottles of the stuff were brought to my room one for immediate use and one for a few hours time. Having scoffed as much food as possible before my 'nil by mouth' deadline I was eventually wheeled down to Radiology and having been parked in a draughty doorway for a while was led into the big room and passed through a large whirling hoop a few times before being wheeled back up to by room.

It is worth pointing out at this juncture that I have not lost the power of my legs but, when in hospital, you must be wheeled everywhere. Its the law. If necessary they may even force you to place a blanket over your knees for good measure.

I have had CT scans before but was still highly nervous about the results of this one. There is that fear that, in looking for the source of infection in such detail, that they'll find something unrelated but staggeringly serious that may have ordinarily gone unnoticed. The results came late in the day on Tuesday and, thankfully, there were no tumours or failing organs. There were also no signs of lost car keys or old coins. My spleen, it is to be noted, has shrunk back to its pre-leukaemia size, it is now a mere eleven centimetres and it is estimated that I have lost three kilograms in body weight because of it.

There was no sign of the source of any infection but as this week has progressed my anti-biotics have been changed to one that got me out of here last time. Early on in the week a number of times in the day and night I would have what I call an 'episode': A feeling of sudden coldness and utterly uncontrollable shakes. Climbing under as many blankets as I could muster over an hour or so I would warm up and the shakes would stop only to be replaced with an intense heat. My skin would be physically hot to the touch and exhaling would be like breathing in a desert. Throughout the whole thing my head would throb, not as a headache. No real pain. Just a pressure. A seemingly endless pressure. This would also last at least an hour and I would remain under my blankets throughout until I felt I could emerge into the world again.

As the week has gone on, particularly under my new drugs, things have slowly improved. I still get measurable temperature spikes, which are highly annoying and blights on my otherwise good 'obs' charts, but the symptoms of my episodes are now far, far reduced. I can still feel them coming on but the effect now doesn't get much further than "oo its a bit cold in here" for half an hour before an hour or so of "oo its quite warm, I'll have to open the window." The head throb is not as harsh or long lasting which has meant I have started listening to more music now. Something I was really missing but just did not have the inclination to do.

I would like to have been out of here by the weekend but it is clear that that is not going to happen. Even if I had a symptomless day tomorrow they would still want to keep me in for the weekend but there are rumours that they may let me go outside between drugs which could open the door to the prospect of real food. If not then I am seriously considering the various methods I may need to employ to get a Chinese takeaway delivered from my favourite oriental eatery in Richmond.

Having dreams is the only way to get by in here. Even if they will never come true.

2010-01-30T18:03:00.004Z

For while I just sat watching my new cell mates and the nurses and visitors coming to and fro. The guy next to me asked for a private room and was being readied for a move but by the time the night shift came on he was still with us. There were repeated requests and eventually a nurse came in to announce that he was going now. Five minutes later another nurse, one who had treated me a lot during my first incarceration, came in to tell him he had no reason to have a separate room and was not going to be getting it. She then turned to me and said "Richard. You have a temperature. You're getting your old room back."

I was quickly wheeled out and into not just any side room but the same side room I have already spent two weeks in earlier this month.

Frankly I am grateful for the peace and quiet and the unlimited visiting hours a side room brings. I also get to turn the lights out when I like.

Today though I ache. More than yesterday. This week I have only felt it when I twisted the wrong way but now its beginning to be there even when I am sitting still. It is hard though to discern how much of it is linked to whatever fever I have and how much of it is just sitting in bed all day. I feel like I need a damn good stretch but an attempt earlier today was aborted due to to many twinges and a sudden feeling that the room was icy cold.

Nothing has grown from the blood cultures that were taken yesterday. Blood is taken and then injected into two bottles that have a sloped internal bottom. On the slope is a nutritious medium for viruses, bacteria and fungus to grow on. The blood slides over this slope and the bottles are left to see if anything grows on the medium. Having no result today does not mean I am in the clear. It should take a few days to grow and there would be concern if there were enough bacteria in my blood to culture this quickly. The jury then is still out on that one.

Tomorrow will just be a day of laying around until Monday's CT scan when they hope to take a look at my now shrunken spleen and find where this pocket of infection may be hiding.

Until then I have a lot of sleeping to do.

2010-01-29T20:29:00.002Z

Well I didn't get out.

I'm not in my own room though which is a mix of blessing and curse. I think I'd go spare to back in there again so soon but when being on an open ward you certainly need to leave your privacy at the door. There are some interesting characters in here too and I have taken to giving them 'prison names'.

"Toenail" is next to me. I cannot see much of him but I can hear him cursing occasionally from the other side of the curtain, what I can see if his foot and he has one massive nail on his big toe. The rest are all trimmed.

Over in the corner we have "Waterman". He's been sitting out in the open for the last few hours trying to coax the tiniest amount of pee into a cardboard pot. After a while the nurses drew the curtain around him but not before a young lady, visiting someone else, had to ask him if she could borrow his chair. She didn't seem to know where to look and he answered politely as if he wasn't cupping himself with one hand and tappng on the box with the other. Behind the curtain there have been continued mutterings of "come on, come on" until recently a celebratory "oo that's it" seemed to signal the end to his plight.

In the other corner sits "Phones" a quiet unassuming guy who asked me to help him move his television earlier. Always seems to be wearing headphones.

Opposite me is "Common Chris". He actually sounds quite well spoken but, according to the name writing above his bed the H has been dropped so it's just Cris.

I have no idea who the last member of our team is. Visitors have come and gone but he is yet to emerge from behind the curtain to my left.

I don't know what they make of me, the new boy, I am certainly a few decades younger than most in here. I guess we'll all bond over the weekend. I hope there's no initiations or anything. Taunting in the night that kind of thing. It was only last weekend I watched Shawshank again and the tactics are clear in my mind.

I am on an IV drip of antibiotics now. Samples of pretty much everything have been taken today and somewhere in this building some microbiologists are riffling through my fluids trying to discern what is wrong with me.

Until they do I am stuck here. Judging by the bleeps, snores, and other bodily noises I am hearing right now I think I am going to be very grateful of my noise cancelling headphones.

I may even wear them to sleep.

2010-01-29T13:22:00.002Z

My release was just over a week ago and so welcome it was that I have been spending time enjoying the delights of a daily shower, the joy of multiple rooms and decent cups of tea rather than turning my attention to writing. Today though I find myself perched on the edge of a hospital bed in a ward just down the corridor from my original room. Post treatment recovery is not going as smoothly as hoped.

On leaving the hospital I was somewhat dazed to be out in the world again; in need of a shower, a shave and a haircut. Some of these tasks were achieved immediately, others over the next few days. I was tired and weak but felt a weekend of rest was all I needed to be truly back on my feet. Seemingly endless dreams of hospitals, nurses, needles filled my restless nights but as time passed I wasn't feeling any better.

As the weekend wore on the chestyness I had felt in hospital seemed to be getting worse and I ached slightly. Each morning since has brought on more aching to the point where I now move around the flat like a seventy year old man. Ooing and Ahhing whenever I get up or sit down. Breathing normally is ok but to take a lungful of air is an effort and at night I have been sweating. Sweating so profusely that most nights require four or five changes of sheets. The bed is now made in such a way that it is only my side that needs changing but it is having a real impact on the quality of sleep I am getting. Some mornings I only get up because I cannot be bothered to lay there and sweat any longer.

Relaying these symptoms to my consultant yesterday as part of my weekly follow up revealed that none of them were expected side effects of the chemotherapy. What appears to have happened is that an infection has crept in whilst my defences were down that wasn't caught by the cocktail of drugs I was being given.

So here I am, back for tests. Hoping that I am not told to stay at the end of the day. Mainly because it is Friday so I am guessing that, if kept in, the next possible release date is Monday.

This is not where I want to spend another weekend.

Bloods have been taken, a cannula is in my arm, and a CT scan has been booked for later this afternoon. Lets hope that what ever they find can be dealt on a strictly Out Patient basis.

2010-01-20T18:58:00.003Z

The cannula has just been removed from my right arm. It is a process that is by far the most painful part of my entire treatment mainly because cannula's require so much sticky tape and I have such hairy arms. The plastic tube is now replaced with a mild sting that over the next few days will turn into an itchy little mound as the hole begins to heal. For now my days of intravenous antibiotics are behind me. I can now look forward to washing with two hands and brushing my teeth with the right.

I can also look forward to going home.

Tomorrow, at some point, once doctors have signed the right forms and the pharmacy have supplied me with a big bag of pills I'll be putting on jeans and a t-shirt and heading home. My neutrophils are now at 1700.

The day started gloomy on the outside and once again gloomy on the inside as I contemplated another twenty four hours in my room. I had pretty much lost all enthusiasm for doing anything other than napping or watching the pigeons on the roof outside. It is not that I was short of things to do, to occupy my mind, I was just sick of this little room. I still am, but at least there is a light at the end of the tunnel.

It is too early to tell whether the treatment has worked, whether any hairy cells lurk in my marrow unzapped by the Cladribine injections that started what feels like a lifetime ago. I am guessing that, as my counts were at zero for a few days, the treatment got all of the ones in my blood. Only another bone marrow biopsy will tell whether it was 100% successful. That will come in a few weeks and unpleasant as it is I am not dwelling on it now. My freedom is the only thing on my mind and it is hard to decide just what I want to do first when I get out other than run from room to room in our flat just because I can. Making a decent cup of tea and cooking a proper meal will certainly be high on the agenda.

Not before I've had a proper shower though.

There's just so much I can do its overwhelming; I think its time to dig out that list I was making.

2010-01-18T21:08:00.004Z

Well the usual Monday team meeting followed by a review of current projects and then a plan for the week probably happened but once again I was not there. I never thought I'd long for Monday mornings at the office. More awake today than I have been I did check my emails and I even Skyped with a few colleagues but soon fatigue overcame me and having found the optimum tilt on my bed I napped while I waited for porridge to arrive.

Being a Monday morning the hospital was full of more bustle than it had been at the weekend. There's a greater concentration of doctors whizzing around and more specialists brandishing the tools of their trade. A cheery phlebotomist breezed into my room not long after the remnants of my porridge had been whisked away, replaced by a mug of tea. Armed with a large 'sharps bucket', a few empty vials, and an elastic tourniquet band with vampire bats printed on it, she prepared to take this mornings bloods. Two vials rapidly extracted and she fluttered away.

For those not nerdy enough to have googled it yet what I am stuck waiting here for is a decent Absolute Neutrophil Count. In a microlitre of normal blood, that is one cubic millimetre, there should be between 1,500 and 2000 neutrophils. Below 500 and you are considered neutropeanic. C'est moi!

On Friday I had zero.

By Saturday I had 30.

Today, ladies and gentlemen, I can announce that I have 400! Cue subdue fanfare.

I take this two ways: Firstly it means that I cannot go home so I am stuck with my room and the 'one hand wash' for a while yet. What it also means however is that the reboot of my immune system has started, my body has found itself able to make some new white cells and they are slowly coming out and doing their thing. My sore throat is still there but much subdued, inspection with a Maglite earlier today by one of my doctors revealed the presence of puss. Not something I would ordinarily be happy about let alone share on the internet but it is a sign that my body is fighting back. My cannula holes still itch but are slowly disappearing. Today at a cellular level wounds have been cleansed and new flesh created. This is, whenever it happens, amazing, in the true sense of the word, but today it is also exciting.

My doctors both expressed genuine excitement at this weekend's change being a team that really invest in the people they are treating rather than adopting a them versus the disease approach whilst being annoyed by the human that's in the middle. I really cannot fault the care I have had here although I think it is less my charm and more that my wife is heavily pregnant that helps curry favour with the nurses.

I have no idea how the growth of neutrophils is supposed to work. It may be linear, logarithmic, or just completely wayward. As such I have no idea how long before I have 500 needed to leave neutropenia or even the magic 1000 that may secure my release. At least we are back into normal weekdays now so they will be counting them every day.

2010-01-17T20:23:00.002Z

Yesterday was spent mainly sleeping and in the moments I was awake I was not inclined to write. Late Friday I started to get a sore throat, it worsened through the day yesterday and come this morning it felt like I was swallowing razorblades. A doctor who came to see me on Saturday had a look but did not seem overly concerned. "The inside of your throat is a little red, but there's no puss." he offered cheerfully. Before then adding that I couldn't make puss even if I wanted to.

The throat is now calming down and the used cannula holes in my arm that yesterday lay dormant have now swollen a little and itch like buggery. I'm hoping that these are all signs that I have an immune system that is waking up. That neutrophils are being made and that they are slowing swilling round my body doing stuff, fighting infection, repairing wounds. I could very easily, of course, be wrong. I have no medical training. No idea about molecular biology. I am merely clutching at straws, hoping that tomorrow they'll find cause to release me back into the wild.

In the absence of any hospital solution my water is now being brought in by my wife. Glass Perrier bottles containing cool, but once boiled, tap water. I simply couldn't stomach the sterile water they were giving me and am sure that it had enough plastic content to induce something even worse than what I have already. To not drink anything could damage my kidneys as they try to dispose of a gazillion dead hairy cells and a noxious concoction of anti-viral and antibiotic drugs. If your pee starts looking like coca cola it really is time to hydrate some more.

My brother has sent in his PSP so what with the laptop, camera, audio recorder, phone, broadband stick, and Bose headphones I now have enough kit here to start up a small electrical retailer. Given that I cannot leave the room I am pretty confident however that none of it will get swiped. If I was on an open ward I would probably be sleeping with it all under my blankets. Having moved into my room in a small rucksack I think I am going to need a suitcase when it finally comes to moving out.

Lack of stimulation then is not my real cause of boredom. It is lack of connection, connection with the outside world. I watch people pass in the car park below yet feel no association. It has snowed, rained, and been sunny whilst I have been in here and yet my room remains at a constant temperature. The only means of escape I have found is to slowly compile a list of the things to do when I get out of here. The top ten simple things.

2010-01-15T19:50:00.004Z

It's our one week anniversary, me and my room and it is a relationship that will extend until Monday at least. A lack of neutrophils in this morning's counts means I'm spending another weekend away from home.

Temperature is still down and, I feel, down for good. The supplements and injections keep coming and thus far there have been no really adverse reactions. My bones ache every now and then, particularly in my legs; it passes after a minute.

A burst pipe up the hill from here has cut supplies to parts of the hospital including the one tap that offers filtered water to the neutropenic. I now have expensive sterile water, ordinarily reserved for washing out wounds, that tastes exactly like the bottle from which it comes. Making it far less enjoyable and much harder to keep up my high water intake.

In the back of my mind I think I had hoped to be leaving here today so an edge of disappointment tinges the air of boredom. Come on little neutrophils get working, there's a big world out there and I would like to get back into it.

2010-01-14T21:26:00.007Z

They say that cancer changes your outlook on life. I guess that premise could be broadened to include any event, illness, or disaster that highlights to you your own mortality; brings home just how little time we all have to offer; and comes as a stark demonstration as to just how fragile all of our holds on life really are.

Today I am still feeling physically fine. Temperature is still down. The recovery, it would appear, has started although there is still no light at the end of this immediate tunnel: no sign of my exit from this room.

In addition to the pills I still have to take and the antibiotic drips I am still on, a number of other ingredients have been added to my daily input. Yesterday I was given a small bottle of nutrient rich milkshake, 'Fruits of the Forest' flavour. Two or three of these turned up throughout the day and none tasted like fruits from any forest I have ever been in. This morning a strawberry one turned up and tasted exactly like the previous ones and exactly unlike strawberries. My latest was chocolate. This did taste different. Very different in fact. And if you held it in your mouth and concentrated really, really hard you could just, just imagine that it might once have been near something chocolate.

Along with some of these bottles comes a small round pot, about an inch tall and half as much wide, of a purple substance. At first I thought it was a taster of the stuff inside the bottles so just drank it. Further investigation has revealed that it is a collagen supplement. For those of you now expecting me to return from hospital with lush, pouting lips prepare to be disappointed. Applied in a skin cream, lipstick, or even eye shadow collagen is useless. A waste of money. It does nothing. Ingested however it can benefit skin growth, the formation of tendons and increased joint mobility. I assume therefore that this will help those bones now bereft of marrow to start working things out or maybe it is just to counter the terrible effects being in the same room for a week can have on ones skin. I guess the NHS are aiming for the former.

I have not invested any time in investigating just where anyone would get collagen from to add to a supplement. As it is not something derived from plants, nor something we produce in excess as humans and are want to give away I'm guessing it comes from animals. Animals that may not have openly offered it up and from parts of them that only celebrity Devonshire chefs would ever consider eating. I'm happy to down a shot of it twice a day though; it tastes a lot like fruits of the forest.

Also added to my regime is a shot of a growth hormone.

No, I am not going to come out of this ordeal taller any more than I am going to have fuller lips.

This hormone is one naturally produced in healthy bodies, often when were unwell, and in my case is aimed at encouraging any neutrophils made since chemo that are loitering around in my now roomy bone marrow to come out and start earning a living. Ordinarily new cells come out of marrow because its full of even newer ones and theres not much room. With enough room in there for them to swing a cellular cat they need a little coaxing.

Last on my list of rare, if not new, experiences, for today at least, was a shower. Enjoying its warmth for a good twenty minutes I emerged feeling human again. Taking them every morning before work it is easy to regard them as the norm and forget how great a restorative effect they have, not just on the body, but also on the mind. Without them we soon decend into a smelly heap. Our minds never cleansed, as time goes on, become more aware of how our skin feels getting dirtier, how our clothes no longer hang on our bodies without sometimes sticking, and how, with human vanity as it is, that others may perceive us as lesser people.

Having Cancer does change your outlook on life. It makes you reassess that which is important and that which is trivial. From now on any working day that starts with a shower is a good day; anything else from there on is just a bonus.

2010-01-13T20:42:00.002Z

I feel like I might just be starting to climb out of the hole.

I would not say that yesterday was awful as there are plenty more in greater discomfort than me. Plenty who suffer excruciating pain. And plenty, like the woman in the room next door, who, confused and scared, cry out in the night unaware of their plight simply wanting to see a familiar face to make it all go away.

For me yesterday was quite a low day. I was riding a high temperature and, despite numerous samples, swabs and prodding, doctors could not determine its cause. So while they swapped around a few of my drugs I slept, shivered, and sweated my way through the day only getting out for ten minutes for a trip to x-ray just along the hall.

Physically I was at my worst but I had also lost my dogged self assurance that I could ride this out. As time went on I grew concerned that they had not narrowed down the source of the infection but the more tests they did the more I was concerned that they would find something else unrelated to Leukaemia.

Once all tests had been done I was given a paracetamol to reduce the fever. My temperature returned to within normal limits, and I slipped of to sleep.

Waking this morning my temperature was still low indication that there was more than mere paracetamol at work. After my first "obs" at about eight I stayed awake; watched the news; and saw the milky sun rise over rooftops freshly dusted with snow.

Breakfast was porridge followed by a CT scan of my throat and chest.

I have read, watched films, and browsed emails from work in nearly equal measure and only now, as the day reaches its end, do I feel tired. My hopes now are that my CT scan is clear of anything - either associated with or not related to Leukaemia - and that this marked improvement on yesterday is not the eye of the storm but a permanent clearing of skies. The start of the road to recovery.

A countdown to the day when I can go home and sleep in my own comfy bed.

2010-01-12T21:15:00.002Z

Bored.

Hot but shivery; they cannot tell quite why.

Sleeping, napping, then sleeping some more.

So very, very bored.

2010-01-11T20:15:00.001Z

So habitual had it become that I dragged my drip stand all the way to the toilet only to remember, once sat, that there was no drip and I was not attached. I hurried along hoping to get back to my bed before anyone came in and saw what I had done. This morning saw a few hours of respite as, even with tubes dangling from my arm, I gained a level of freedom of movement not encountered since yesterday's shower. Had I have known I would have delayed the 'one armed wash' I am becoming so expert at. Once you accept that there will be water everywhere by the end of the process the rest goes smoothly.

It has been a slow day and these four walls are now beginning to close in. There's a picture of two fishing boats in a Cornish harbour at low tide that I have invented an entire back story too. I'm wondering about asking for some paint so I can decorate the walls. They don't need it but it'll kill some time.

I have been very tired today. Frequent naps between feeding and drugs has been the general theme. I have also been a little nauseas. Not in a dodgy food way; more in a too much beer last night kind of way. Ah, if only that were the case. I assume that, with all white cells destroyed, and hopefully the hairy ones, my body is now filling my marrow and blood with some fresh, new and non-malignant ones. That is probably pretty hard work under the hood. I'm happy to take it easy although first thing this morning I had planned to do a little work to try and throw some normality into the day.

An impromptu nap soon saw an end to that.

The blood transfusion that started yesterday finished today and I now look a more normal colour. Bags under my eyes have gone as have tiny blood spots on my skin. I get small twinges under my lower left rib that I hope are my massive spleen shrinking but it could just be my stomach rebelling against the hospital food. It is not wholly bad but it lacks fibre and in a lot of cases flavour. Thankfully because I am neutropenic I get a hot meal at lunch rather than just a sandwich. It does however mean I am working through the menu quicker.

Tiredness is overcoming me once more and another snooze is in order. I'm hoping that the next few days will see a steady increase in energy as I continue to recover and eventual step out into the outside world.

2010-01-10T20:14:00.001Z

I've hit rock bottom.

Not mentally, in that respect I am still optimistic, but my immune system, for months lowered; over a week dropping; today hit zero. This afternoon my neutrophil count was 0.03%. If they're going to get to zero then that's where they are as I type. Another day has passed in my little room and this morning, under cover of a face mask, I was allowed down the corridor to another ward where I could have a shower.

Feeling particularly icky, already unkempt hair beginning to matt into greasy clusters, I was so so grateful for the feeling of hot running water pouring over me. I had been detached from my drip and my peripheral line wrapped snugly in a number of plastic aprons to stop water ingress. The combined feelings of cleanliness AND freedom were amazing; fifteen minutes of bliss well worth the logistical effort required.

Back on my bed, clean and gleaming, I was soon hooked back up to my line. Supping a cup of tea. Eating cookies.

I find myself things to do in my room but, as a feel fine, there is not a great deal to tell: The tightening in my chest seems to get worse at night, I think it is brought on by tiredness, but has not yet developed into a full on cough. In addition to my saline drip, intravenous anti-biotics, and anti-viral pills I am now also having a blood transfusion. I'm on my second unit now and there's a third to come tomorrow.

My lovely chemo lady bounced in to say hello on her way to another room, bag of yellow chemo in hand for someone requiring treatment more time consuming than my own.

Family have visited bearing the holy grail of a T-Mobile USB broadband stick, the most painful part of my stay so far has been trying to set it up. Having got them to finally take some money I was not allowed onto my blog because "it may contain porn". The solution: to go to a T-Mobile store and prove I was over 18! Many phone calls later I got the lock removed remotely but not without great effort. My advice to anyone following in my footsteps would be to set such a service up way, way before hand to avoid any unneeded stress.

Still my T-Mobile antics filled an otherwise empty afternoon and I got to speak to some new people. Which was nice. You have to enjoy the small things in here as there is not a lot else going on; I've readopted the enthusiasm of a child for all things new.

Last night we had a fire alarm which caused a lot of bustling on the wards around me. Content to stay put unless I actually saw some smoke I felt genuine excitement at being able to watch the fire engine arrive, lights flashing, in the car park six floors below.

Hospital Radio has been everything I hoped for and a joy to listen to. Even in this enlightened digital age the audio levels are all over the shop, segways are fumbled, and the music mix is so specifically chosen that it has equal irrelevance to all who listen. Meanwhile the screen emitting the noise shows a Powerpoint presentation advertising the Patientline service featuring people grinning so inanely I had to turn it round to point the other way lest I become possessed.

Sanity will be reintroduced to my little world this evening by West Wing Series 1. I do not plan to plough through the whole box in one sitting but I hope that just observing some extended, intelligent, adult conversation will pull my mind back from the happy clappy place it feels inclined to visit. My only other option is to just let go: stick two pencils up my nose; my pants on my head; and to start saying "Wibble".

2010-01-09T19:24:00.002Z

It has been pretty much twenty four hours since I was admitted to my room. People have come and gone with drugs, cups of tea, microwaved meals, and a variety of machines for monitoring bodily functions. I have not stepped out of the door and have been told not to without at least the precaution of a face mask.

I am thankful for the large window that offers a high rise view of the snowy vista outside; I am grateful for the cookies and snacks brought in by my wife early this morning.

Despite disturbances in the night to change drips or take drugs I slept well, albeit aware of an increasing tightness in my chest. Not part of a general ward the nurses left me alone to sleep in for as long as I wanted although I missed being woken by the kicks of my unborn daughter as she wriggles around in my wife's tummy.

The morning saw an experiment in one handed washing. I tried not to snag my peripheral line as I took of my t-shirt and threaded my drip through it before embarking on an ordinarily simple venture. Face, armpits and teeth were all I managed this morning. Now I have rehearsed I shall aim for a greater level of thoroughness tomorrow.

Currently, as I type on the worst keyboard in the world attached to a screen reminisant of the rogue ship's robot in Wall-E, I feel pretty reasonable. My hips ache, the beginnings of a cough still linger in my lungs, but aside from that things are good. My consultant popped in to say hello - on a Saturday - and is happy about how I am doing and how severe the drop in white cells has been. She showed visible excitment at the prospect of feeling my spleen later in the week.

All I can do now is sit and wait, eat my snacks and hope for a decent film on TV tonight.

2010-01-08T19:07:00.001Z

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.

2010-01-07T17:25:00.006Z

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.

2010-01-06T18:59:00.007Z

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!

2010-01-05T20:01:00.006Z

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.

2010-01-04T22:15:00.002Z

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.

2010-01-01T20:35:00.005Z

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.

2009-12-24T18:00:00.000Z

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.

2009-12-21T20:59:00.002Z

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.

2009-12-12T23:00:00.003Z

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.

2009-12-04T22:50:00.004Z

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.

2009-11-19T22:28:00.003Z

A glass of red wine. To celebrate.

It won’t cure me but it will help mark a small success of sorts. This afternoon saw another blood letting session followed by a rundown of the results with my Consultant. Work has occupied my mind over the past weeks but yesterday evening I was noticeably anxious. It’s not that there is anything to fear. There’s no pain; no discomfort. But in getting on with life sometimes I forget where I am.

Often normality begins to seep into my extraordinary world. I forget. A hospital day is a reminder of how things are and what my reality is.

Three weeks ago, at the last meeting, my red blood cells and haemoglobin had stayed steady but my whites were on the increase. Were the increase to continue its possible that my chemotherapy would have been brought forward as such I’ve been marking time this week wondering if the run up to Christmas was going to be very different this year.

After a while in the waiting room, catching up on last month’s issue of The Word, the results were in. The meeting was quick and to the point and pretty much standard procedure. I report on me, then I get a report on my blood.

For me I still feel fine, if I hadn’t been to the doctor a few months ago I still may not know. My temperature is level. No fever, rashes, infections. I haven’t had a night sweat since the week I had my transfusion. The only telling sign of my disorder is that my spleen aches if I eat to much, squeezed against my ribs by my stomach, but its like a dull stitch. In an ordinary world I would have put it down to a pulled muscle from sitting awkwardly all day rather than that second (possible third) helping of dinner I just couldn’t resist. My appetite has certainly NOT been affected.

And so to the bloods. My red cells are holding steady, not giving up space to those hairy bastards. The hairies themselves are also holding level. This is very good news. The only count that’s down is my haemoglobin, it’s job is to bind oxygen to the red cells and dish it out as they float around my body.

So I’m definitely not getting some pre-Christmas chemo. What I am going to get is another blood transfusion. Time to top up the iPod ahead of next week. By rights I should be flying to Latvia to close off a project I’ve been working on all year but instead of taking that flight I’ll spend the day sitting in a chair staring out over a Day Ward. It will be less stressful though and it’s an excuse to get out but sometimes I miss being part of the action. Being normal.

Maybe my morning dose of beetroot juice is doing something, or maybe its the meditation, maybe its none of these or both of them combined. Whatever the reason my hairy cells have ceased the expansion of their empire for now and thats the best I can hope for at the moment so I’m enjoying a glass of red wine to celebrate. No matter what you think you’ve read though it really isn’t a cure.

2009-11-14T17:30:00.005Z

Even though I'm working from home everyday I still make the effort to get out.

As I look out of the window now rain is traveling horizontally and any birds that abandon the precariously waving branches of a tree are blown sideways in a manner that suggests they're not entirely in control of their final destination. Yet in spite of the current inclement weather I take a daily walk along a stretch of the River Thames near my home.

It's a beautiful walk, ever changing with the seasons, thoroughly refreshing for mind and body but even though I go out every day I very rarely interact with people. In the centre of town earlier this week I gazed through the large open entrance of HMV and saw the people inside not as fellow music lovers, buying the latest album from this week's favorite popstrel or trying in vain to find a fifth qualifying disc they actually want to complete the 5 for £25 offer, but as a throng of possible infecters. A seething mass of people potentially carrying all sorts of viruses and infections. I was genuinely concerned and heart pounding chose not to go in. Instead I passed through town, across the market square and got back home. Wherein I ordered an old Willie Mitchell CD online.

When I do go out and meet people invariably they all want to stick needles in me. Most of the time they want to take something out, blood or bone marrow, but today there was a change in the procedure because they wanted to put something in.

My treatment has been delayed due to the possible Swine Flu Epidemic that may or may not come to full blown, apocalyptic fruition. Much like the Millennium Bug there is a lot of fuss but it may not come to much; many may posthumously miss the point in wondering what all the panic was about when nothing actually happened. Failing to realise that the reason it didn't happen was because of all the furore, media attention and hard work by those best placed to stop it.

For Swine Flu the fuss is in the form of a media campaign telling us how to blow our noses properly and how often to wash our hands. Two actions you'd expect civilized society to already be doing. A third assault on the impending epidemic is vaccination. Targeted currently at the elderly, pregnant women, and certain other “at risk” groups.

At the age of 35 I never expected to find myself in an at risk group for anything.

Although relatively untested on humans I have no reservations about having the jab. It is likely that with a very low count of proper white blood cells I won’t build up an immunity to the virus but certainly I see no harm in it; some possible protection is better than none at all. The real key to protecting me from the virus both before and after treatment is to vaccinate those around me. My parents are going to have it, my brother is trying to have it, and my wife has also had it. It is her having it that has been the real quandary in all of this because she is pregnant.

There is an immense national, and possibly international, fear surrounding the subject of vaccines and babies, be they toddling around or still waiting to come out. The foundation for most of this fear is the link to MMR vaccination and autism. A link that is now known to be a complete fabrication by a single, financially motivated, doctor but that was so widely publicised it still causes knee jerk reactions when the subject of child vaccination is raised and continues to fuel web based conspiracy theories ready to be lapped up by those that want to find them.

Putting the MMR “scandal” aside there is a genuine base for concern over giving the flu jab to pregnant women but the only basis for that concern is that it is new and relatively untested. It is uncertainty that is at the forefront here, not proof or rumour of possible damage.

It has been routine in America for some time but pregnant women have only been given the 'normal' flu jab in the UK since 2008. That was started however because studies showed actual benefits to the health of the mother during pregnancy and of the baby following birth. The delivery mechanism for the Swine Flu vaccine is the same for this established, non-controversial jab. The only fractional difference is what is inside; it is a different strain of the virus and therein lies the unknown. To my mind however, the risks are small.

It may be that in five years time it is revealed that all mothers given the vaccine are all starting to shrink to microscopic sizes, or that their children will all turn blue when they reach puberty. Who knows!

It is important in all aspects to have an eye on the future, to plan for what might be or guard against possible threats but in all things we need to focus more on The Now. Life is not perfect - if it were I would not have Leukaemia - life is full of risks and sometimes if you don’t take those risks then a greater gamble lies in the future you are protecting against never actually happening.

Today we have taken a small risk with the future health of our child, a step into the unknown, but we have done so to ensure that we all make it to that future. With one immune system reduced due to pregnancy and one that is about to be wiped out by chemotherapy, Swine Flu is far more likely to kill one or both of us than the vaccine having a detrimental effect to our unborn child. It is a move that was not taken lightly but one that gives a far greater chance to all three of us being their to enjoy her thirteenth birthday. Even if she does turn blue.

2009-11-07T22:30:00.000Z

One month.

Has it really only been one month since I was diagnosed?

To me it seems like I have been living with this for years, life without it seems to be less a memory and more a hope of what, one day, could be. The month has been an emotional roller coaster that I could not possibly have imagined and that I find difficult to fully describe.

Things are settling now though. A new routine has evolved to adapt to new circumstances. And although much is still the same, a lot has changed.

My daily drive to work has been replaced by just under an hour of meditative breathing. There is scientific research and anecdotal evidence suggesting a highly oxygenated body is far better placed to fight off cancer than one that is not. Whether this applies equally well to treatment as well as prevention I am still not sure but physiological effects aside the mental effects are just as important. Taking the time to meditate on my condition and summon a determined resolve to fight it is a supremely energising experience.

I used to make occasional efforts to meditate and to improve my breathing as an avid diver and snorkeller eager to extend the time spent at the bottom with the fish rather than on the surface splashing around, but I never did it seriously or consistantly. The renewed energy I find from meditating I owe simply to a very good friend. One who, having survived cancer herself, runs a yoga and pain managment retreat on the south coast and who, on visiting London last week, filled me with so much of her inate energy and drive, left me absolutely believing in my ability to beat this thing for the long term. For that visit I am deeply thankful.

A sandwich at my desk or a hastily grabbed hotdog from the 'snack wagon' that services our office has been replaced by a thoroughly healthy salad that is absolutely divine. Not unlike finding time to meditate this too was an occasional indulgence I'd treat myself to in my former life. My previous job would often find me lunching somewhere in the narrow, winding, and often still cobbled roads of London's West End. At the top of Carnaby Street there is a cafe come restaurant called Leon that serves the most amazing food. It's not cheap, but given that the food is organic and fresh the difference between one of their offerings and a prepacked, mass produced sandwich from the "Pret" over the road is a price worth paying.

I used to occasionally indulge myself in what they sold as a "Super Food Salad". It's no exaggeration to say that having one for lunch gets you zinging all afternoon; no coffee required. The recipe can be found in a book released under the Leon name a year or so ago and now I make one of these every single day. Only now its not costing me six quid a pop!

For anyone battling with any form of cancer I can highly recommend it. From what I have read so far on cancer and nutrition, and there is still a lot to wade through, the ingredients in this little beauty are all top hitters in the fight you have on your hands. I'd publish the recipe here but that simply wouldn't be legal. Go out and buy the book. The purchase price is worth that one page alone.

Lunch is also now followed by a good walk, in fresh air.

I have a new chair. Until this month working from home was an occasional flirtation with solitude born out of a periodic requirement to get my head around something without the distractions of an office. These sporadic dalliances were usually carried out with my laptop on the dining room table; or perched on a cheap Ikea stool in our study. An environment more suited to an hour of emailing or processing photographs than a full day of work.

Restlessness is inevitable and it soon became clear once my treatment was delayed that I was going to need something decent to sit on if I didn't want to lose entire days to getting up and making tea simply because I was fidgeting.

A colleague in our New York office - his apartment - was very keen, and quite correct, in stressing the need for a good office chair if you're going to be working from home and I am inclined to agree. I reasoned that if nothing else good came from my diagnosis it would be an opportunity to own a chair I have often coveted but never found the justification to own. It sounds a strange idea, and whilst I am not one to indulge in 21st Century Man's desire to own and consume every 'shiny toy' going, I do enjoy the delights of a damn good design.

If you work from home, cancer sufferer or not, get a good chair. And whilst you're on the hunt for the one that suits you sit, sit for a long time and savour, an Aeron made by Herman Miller. Your partner or bank manager may not thank you. But your back certainly will.

It has then been a month of massive shock and of subtle changes. I have learned a lot about the strength within myself and those around me. I have renewed cause to evaluate my views on life. It has been a month wherein I have experienced incredible sadness and absolute depression but where I have decided the only chance I have of beating this disease in the short and long term is to enjoy every second I have left. Relishing more than ever the simple pleasures of daily life, the family I have around me, and the true friends I have around the world.

I am positive that my treatment will be a success but even so this period of my life is very much the end of an old way and the beginning of something very new.

2009-10-31T22:09:00.017Z

Yesterday the effects of Monday's vast consumption of x-ray dye finally faded away. On the day of the scan, once I had returned home to carry on working, parts of my body would go cold on the inside. The feeling would come and go in a matter of seconds but served as a reminder that some weird chemical was sloshing around my bloodstream.

First my forearm went cold, then later the back of my head. A hand. At one point an eyeball. As the day passed the time between these anomolies would lengthen and they would become more subtle, like echos slowly dying away into the distance.

The only other noticable side effect has taken a few more days to subside. I won't go into details suffice to say that anything I consumed went through me at speed and I am thankful that the desk where I now work is staggeringly close to my bathroom.

My colleagues will have been glad that I am working from home.

On Friday then as my body returned to relative normality I readied myself for a trip to the hospital and prepared myself for the results of the scan. First on the agenda, as always, was a blood test. The ordinarily packed waiting room was practically deserted, the usual crowd of pregnant women and deathly ill no where to be seen. I'm wondering if the daily mixing of these groups has finally had its inevitable effect or if swine flu is on the up and all are obeying the messages and staying well away. Three vials were drawn and, bidding the nurse a good weekend, I walked across the corridor to await the results.

My red blood cells are where they were two weeks ago, meaning I am managing to hang on to the ones I gained through my blood transfusion which is good. They are not at the level they'd be if I was completely healthy but there's enough of them rattling around to stave off the need for another transfusion for now. I am still a pretty normal colour and am also able to run up stairs without getting out of breath.

White cells are on the increase. Not the good ones though. The hairy ones are multiplying but not at a rate that seemed to concern my Consultant. There is certainly no reason to rush treatment and it is looking as though that will almost definitely happen in January. By that time, it is hoped, Swine Flu will have come and gone - or not come at all - and Christmas too will have passed. The aim is to start Chemotherapy in the New Year but to get the worst part of my treatment out of the way before I become a father. I only hope that this is how things actually pan out. It's certainly going to be tight.

And so to the size of my spleen. As I had already seen at the beginning of the week it is big, the generous proportions being a side effect of my disease as the hairy white blood cells accumulate causing it to expand. My concerns that it might need to be removed or that it may burst were quickly dismissed much to my relief. Spleens it would seem are not inclined to pop once they reach a set density. They will instead simply continue to expand until they fill the entire abdominal cavity so that there is room for little else.

"They get bigger that that!" my Consultant assured me as she pointed to my pregnant wife's belly. On occasion this Leukaemia is only discovered when the patient loses weight through not eating because they always feel full. The spleen having squashed the stomach to an extent that there is little room for food.

I'll admit to immense relief to not having to undergo a Spleenectomy and am assured that it will shrink somewhat after my treatment as all the cells inflating it are killed off and flushed out. There was however a slight pang of disappointment that it wasn't a medical marvel to be gazed at in awe at by the Hematological fraternity. Probably just as well. Were that to be the case I doubt that I would be around to relish the fame.

What is marvelous, apparently, are my hairy blood cells. Trust the little blighters to steal the limelight! Hairy Cell Leukaemia is very rare and as a result difficult to study. The majority of blood samples from sufferers contain very few cells and for today's hematology student they can be pretty hard to spot. My cells, I am told, are in great abundance and are blatently hairy, as a result a teaching hospital has asked if they can use the slides in their lectures.

If I can get a copy of the slide for myself then maybe one day they'll put in an appearance on this blog and we can all finally see the cause of all this fuss.

2009-10-26T15:05:00.019Z

Aniseed.

I hated aniseed balls as a kid, I hated the sambuca I was given on my stag night, and I hated the x-ray dye I drank this morning.

Unlike last night however I had the wit to leave brushing my teeth until after I had drunk it.

I passed on the "mixing with juice" option and went for the minimal "add to 300mm of water". Although this only serves to make the time taken to get it down even longer; a small bottle of foulness now becomes half a pint. Once downed however, and bereft of any breakfast, we made our way through the park to the hospital.

Wherein I was presented with a large jug of x-ray dye mixed with juice. Excellent.

After I had slowly drunk the latest incarnation of this nauseating beverage I was led through to the CT Room in which sat a large Stargate attached to a long thin bed. The Radiology team were great and explained what was to come as the bed slowly moved up and positioned me half way through the scanner.

I had to hold my hands above my head as, rapidly retreating to an adjacent room, the Radiologist fired up The Beast and the bed started to move. An automated message told me to hold my breath and as I did so my torso was slowly drawn through the large hoop. This happened twice and was utterly painless. No problem.

Emerging from her bunker the Radiologist then set me up for the next scan which was not to be quite as simple. First a needle into the arm, swiftly followed by a shot of saline - the cold hand sensation from my blood transfusion returned for a moment - before I was hooked up to the x-ray dye pump. In spite of the blood tests and transfusions I am pretty sure I won't get completely used to the needles going in, this one seemed to sting more than others. Maybe it gets worse the more it is done as scar tissue builds up at favoured access points. I hope not.

Raising my arm up into the air to keep it out of the scanner I could see my blood slowly traveling up the tube towards the pump. The latent pressure in the tube not quite sufficient to keep the red stuff in. With the pump switched on my blood quickly returned to my body followed by a pressurised flow of iodine dye. It's ever so slightly warm and quickly works its way round your organs, or so I was told. Personally I didn't feel it going in or swilling around but when it gets to your kidneys a warming sensation makes it feel as though you're soiling yourself. The Radiologist assured me I wasn't as she retreated back to her room and initiated another two scans.

Procedure over and looking at the results of the scan it would appear that, as expected, my spleen is larger than it should be. Massive in fact. Whether this will reduce following treatment I do not know. And I'm not sure how large it has to get before they'll want to take it out. I am really, really hoping that I do not need to have a splenectomy. It would add another level of complication to my treatment and mean a lifetime of illness and poor immunity.

Having mentally accepted the inevitablity of chemotherapy, major surgery is a stop on my journey that I'd like to avoid. The choice is not mine to make and whether I have to make that stop or not will be revealed on Friday at my next consultation.

Until then its back to work and back to the waiting.

2009-10-23T21:21:00.009+01:00

Timing, they say, is everything. There's never really a good time though to get diagnosed with Leukaemia but the timing of my diagnosis seemed, at first, to come at the worst of times.

Some years ago, due to the misdiagnosis of a condition, my wife had to undergo a fair amount of surgery. Surgery that has severely impacted our ability to have children. Surgery that has meant for the last few years we have been having ongoing fertility treatment in an attempt to start a family.

This year, after the emotional roller coaster of subsequent IVF failures, we finally had some success. And the result of that success continues to grow.

The news of my Leukaemia came the day before we had our 20 week scan. The pensive excitement of the week shattered in a single phone call. At the time of the scan, the word Leukaemia hanging in my mind with no details as to the type or prognosis, I was at my lowest ebb. The results of the scan were all good but I was not sure, at that point, if I would be around for everything else that was to follow. Birth; school; graduation?

Now that things are clearer, the diagnosis confirmed, and the prognosis reasonably good, excitement about the impending birth has returned. But even before the birth she, yes we think its a girl, is having a massive impact on my life.

Since this whole thing began I have not slept well. I struggle to get to sleep and then once I am there my nights are filled with surreal dreams and plagued by cold sweats, the latter being one of the symptoms of my condition. I often find myself getting up at 3am, towelling myself down whilst, half asleep, apologising profusely to my wife for once again turning my side of the bed into a swimming pool. After nights like this I find myself shattered come the following afternoon and in spite of this tiredness the cycle continues.

Relief from this cycle is now coming from my daughter (or son, you can never be 100% sure). Unborn though she is I obtain a serene calmness by slowly drifting of to sleep, hand resting on her mum's tummy, feeling her kick and wriggle. Nights where there is most activity as I doze off are those when I sleep the best. Often without dreaming or sweating.

I am sure that the sleep deprivation will return once she's 'out' but until then I feel I already owe her a debt of gratitude for helping me through this trying period.

She (or he) is the greatest distraction from this turmoil and her timing is perfect.

2009-10-20T15:18:00.017+01:00

The rabbit hole in my very own Wonderland gets deeper as two bottles arrive in the post. The instructions that come with them extend to slightly more than 'Drink Me' but only just.

With all the tests that I've already had and in trying to adjust to my period of waiting I had completely forgotten that I am due to have a CT scan. The date for this, it would appear, has now been set.

A common physical symptom of my form of Leukaemia, is an enlarged spleen. Time was when the treatment included its removal but its effectiveness was limited and it meant a lifetime taking drugs to compensate for the lost organ. This is no longer the common practice but for completeness my consultant still wants to take a peek.

Clearly something that's vital to my existence I feel ashamed that until this month I didn't even know where my spleen was let alone what it did. Knowledge of its location probably left my brain no sooner than I closed the paper in my GCSE Biology exam. Washed away in a post exam booze up with the swathes of other information school had pounded into me that I assumed I'd never have need for again.

The two bottles have arrived with a letter that, unlike the variety of stock letters I've been receiving from the hospital, contains an unremitting thread of pessimism throughout:

"Your doctor has requested that you have a CT examination." it begins, the full stop I read as a 'tut'. An inference that this is all going to be a great inconvienince to Radiology as it's right in the middle of their coffee break. Half way down the page a line, I would have thought was unnecessary but they feel the need to write in bold, goes "Please DO NOT assume the result of the test will be normal." as if anyone who is in need of such a test, whilst coming to terms with their predicament, needs further reminding that life isn't that rosy right now and may get even more bleak.

There then follows instructions on what to do with the bottles or more importantly their contents. One is to be drunk on Sunday night, the other Monday morning. They need to be diluted with water and, if I want, I can "add juice for flavour".

I've not had a CT before, nor have I opened the bottles for a sniff, but I'm guessing no amount of juice is ever going to cover the taste of the X Ray dye these bottles contain. I shouldn't judge to soon I guess; it might be tasteless. And I should be thankful: the leaflet that came with them suggests that the contents could be take anally! Although for that they'd need to have supplied either bottles with more rounded corners or at the very least a funnel.

The leaflet also lists the possible side effects and I only hope that I get none of them. Almost without exception they seem to require rapid hospitalisation or are far worse than my disease itself. Nothing I really want to deal with late on Sunday night when I pop the first one. Only one way to find out though really. I've just got to keep walking the path.

2009-10-18T21:15:00.009+01:00

Finally they got a change of water and the bowl thoroughly scrubbed. They get fed everyday and are great breakfast entertainment but since this whole Leukaemia thing started I've just got not around to cleaning the little fellas. I have been feeling guilty about it for days.

It has been a quiet weekend, a weekend of consideration, a weekend of cancellation. Being someone with an ordered mind I find that to take on a task as large as this I need to break it into smaller chunks. To me before I can sort out what I can do with my life before and during my treatment I need to deal with that which I can't.

There are varying levels of immunity to infection. Right now mine is low, during treatment it will be zero. For now then, while I wait for a swine flu epidemic that may never come, I need to make some lifestyle changes to help avoid getting ill.

I've talked to my Hematologist and spent many an hour scouring the internet to see how others have dealt with this situation and on this world wide web I have found little to go on. Most, it would seem, are treated straight away so do not have to suffer a protracted wait for treatment.

What I have found is some who avoid infection at all costs and others who carry on life as usual and accept the antibiotic cocktail that their system then needs. In trying to strike a happy medium and set a policy that is vaguely workable I've conjured the phrase "Crowds and Contact". I.e. those are the things I need to avoid. By staying away from crowds and avoiding physical contact I should, all being well, remain infection free.

Fortunately my work is such that I do not need to use trains, buses or The Underground, prime territories for sharing pathogens that will not be difficult to avoid. I can also work predominantly from home. Meetings at the office can serve as a means for keeping in touch whilst avoiding entire days spent in recycled air and gambling with infection each time I select one of the eclectic shared mugs from the kitchen.

All this seems eminently workable but there's a lot more to give up: Today I have canceled a number of gigs in London that I was due to photograph. Live music photography is a passion of mine but for now I cannot get to the gigs or even be in the venues that host them. It may be next summer before I can start shooting them again.

Tomorrow I will be canceling my attendance at a number of social events that were lined up for the next few months. The office Christmas party is off limits for this year too.

This process is not a wallowing in the potential boredom that my current condition imposes but an essential part of coming to terms with my short term predicament. The key, I think, is in striking a considered compromise between demanding absolute freedom, but opening myself up for inevitable infection, and allowing myself to be trapped by fear. Staying at home all the time and staring out of the windows. Slowly pacing around. Like a fish, in a bowl.

2009-10-16T15:28:00.013+01:00

And so I waited for the phone to ring.

After what turned out to be a reasonable night's sleep this morning we made the slow journey through Richmond Park to the hospital on the other side. The first visit was to the matter-of-factly titled 'blood room' for yet another blood test. Sharing its waiting area with the anti-natal department the room was packed to the rafters with sick looking individuals and pregnant women. A combination I wasn't entirely sure was a good idea.

Having been called up I acquired the third hole in my right arm this week and more vials were taken. The nurse recognised me and asked how I was, miraculous I thought given that she is jabbing a different person's arm every two minutes every day.

Test complete it was then through to another, far more sedate, waiting room for the result of this latest test versus all those that had come before:

My red blood cells are up, although not to a normal level. Another blood transfusion may be in the offing. This is clearly the closest I'll come to making a long haul flight for some time. Sadly it has all of the boredom without any exotic destinations.

I am going to require a week long course of chemotherapy. After which I will then need a six month course of antibiotics. The drug I am to be given is called Chlorodeoxyadenosine and, compared to some chemotherapy drugs, the side effects are mild. Headaches, vomiting and skin rashes being the most common external effects.

Internally the effects are more pronounced. My current level of immunity is low: I need to avoid crowded places and specifically people who I know are ill so as not to risk falling ill myself. Should I fail to manage to stay well a trip to A&E would be required for a heavy dose of intravenous antibiotics. The chemotherapy drugs would however reduce my immunity to infection to zero. Whilst dealing with the effects of my Leukaemia it would leave me with no ability to fight even the slightest infection.

Best then, you would think, to start the treatment straight away. Strike while the iron is hot! Get back to normality as soon as possible. If only life were that simple. If only we weren't heading for a possible flu epidemic. A time when, if it ever comes, would not be the best time to have zero immunity.

The number of new cases of swine flu in the UK is doubling every two weeks. Last week 27,000 more people caught the infection, up on 18,000 the week before. If I catch swine flu in the first five weeks of starting chemotherapy it would kill me. It may be better, in the long run, to wait for the Pandemic to pass or fizzle out as a non-starter.

And so I waited for the call. The call from my Consultant who was going to discuss this quandary with her colleagues and let me know just when we could start to put an end to my Leukaemia.

And the call came.

And they want to wait.

So now I'm in limbo. I know what my treatment entails and how long it will last but I do not know when it will start. Until it does start I need to find a way to make what I thought was a temporary lifestyle change a more permanent fixture.

This in itself is not going to be easy.

2009-10-15T14:31:00.002+01:00

As the day that I am given the details of my forthcoming treatment approaches my ability to sleep is reduced. Feeling tired as I write I am sure that last night's tossing and turning is only a precursor to even more surreal and distorted dreams tonight. The knot that I had in my stomach this time last week on discovering my condition has returned as tomorrow I find out how the medical fraternity aim to control it.

Aside from a walk along the River Thames close to my flat yesterday the only times I have left home this week are to go to a hospital to have something poked, something removed or something put in. The internet has been my only real access to the outside world and as such I think I have done well not to spend the whole week Googling my condition. I'll confess to searching "Leukaemia" on That First Day but the results were bewildering with a broad range of scary prognoses and outcomes. Heart racing and eyes glazing over I took a deep breath and pointed my browser elsewhere.

A week on, having spoken to actual experts who actually exist, I have a far better idea of what I have and what it means. For those that stumbled across this blog having failed to resist the lure of internet diagnosis here is my attempt to sort the wheaty facts from the Wikipedian chaff:

On Monday I had absolute confirmation that I have a condition known as Hairy Cell Leukaemia or, given that we have to abbreviate everything these days, HCL. This was based on the blood tests and the bone marrow biopsy; without the marrow it is possible to diagnose something else as HCL.

HCL is very rare accounting for 2% of Leukaemias. There are on average only 100 cases of it discovered in the UK every year.

It is far more common in men and doesn't usually set in until middle age. Most sufferers are over 60. It is neither infectious nor inherited.

The onset of HCL is slow and discovery is often via a routine blood test or when looking for something else. The commonest symptoms are however tiredness, frequent infections, and an enlarged spleen. I have no idea where my spleen is.

The outlook for sufferers is good. The condition can be treated and, if infection is avoided at key times, most manage a near normal life expectancy.

Treatment is via one of three possible chemotherapy drugs and / or the removal of the spleen.

It's on that last line that my stomach tenses again. I know that all of the treatments have their own individual side effects either long term or short and I've resisted Googling the individual drugs to avoid giving my dreams something to latch onto. "Chemotherapy" conjurs up as many fearful prospects as does the work "Leukaemia" and yet just as the L word covers a broad range of diseases the C word covers a broad range of treatments. I'd rather wait for the facts to arrive tomorrow.

I'm told that the therapy I am likely to have does not involve the loss of teeth or hair and for this I am thankful but any drug that prevents cell division is likely to have some unpleasant side effects.

This is the path I am on though and there is no other way round. Strength comes from the knowing that others, few though they are, have walked it before and most have come out on the other side. Strength also comes from emails, cards and Skype messages wishing me well. They really, really are much appreciated and help me feel attached to a world I feel physically removed from. The internet, whilst the source of infinite misinformation and misplaced fear, is also a treatment for one of the less well documented symptoms of this disease, that being isolation.

2009-10-14T17:56:00.000+01:00

Working from home.

When done occasionally its a joy to be free of distraction and an opportunity to get a lot done.

When its compulsory its a different matter. You feel constrained by it and miss the distractions and interactions that an office brings. With no immune system though the dining room table is now my desk, Skype my only pipeline into the office chatter and a slow VPN the only way I can get at my files. Now though, at the end of my first day of work in a week, most present in my mind is a dull ache in my lower back. An ever persistent reminder that last Friday I had some bone marrow removed.

Blood tests it would appear can only tell the experts so much. To confirm that I have what they think I have two more things were needed: A core sample of one of my bones and a sample of the bone marrow itself. Neither of these are quite as simple to get at as blood.

It's a undignified and uncomfortable procedure but as my GP informed me before I went in "It's not the worst thing we could do to you!". The dignity was lost when I was asked to drop my jeans and lay on the bed in a ball. At times like this I feel you just have to give yourself over to the medics and let them get on with it. There's no room for embarrassment or bashfulness; your body is no longer your own.

Adopting the foetal position on a plastic bed with a tissue sheet the Consultant moved my boxers out of the way and duly swabbed my hip with iodine as a nurse made her way round to the side of the bed I was facing and offered up some distracting conversation.

We all waited the customary five minutes for the local anaesthetic to take effect before the doctor began to dig in. First there is a needle for the marrow, then there's a needle for the core. Bone as you know is pretty firm stuff so both require some force. This was the first time I'd had this done and I am told that how the process feels depends very much on the doctor that's doing the digging.

Expecting a searing pain I have to commend my Consultant for her expertise as, in this case, neither needle was painful. Well not as such. Both were however staggeringly uncomfortable. The closest thing I can liken it to is being shot with a Paintball. At close range. For ten minutes. Constantly.

Once done the discomfort lasts for days. It makes a small hole but you can't sit on it, lean on it, and allow anyone to touch it without at least one grunt or swear word passing your lips. Yesterday I had pretty much forgotten the whole affair but after a day of working in our dining room the ache is back. I never thought I'd miss my old office chair.

The normality of getting up and going to work every day can often seem tedious. Causing us to long for a more interesting lifestyle where there's no office to go to, wild times are to be had and anything can happen. Now that I live in interesting times I long for that routine. Seeing the same people everyday; doing the same things; knowing you'll be back there tomorrow is a situation that everyone should relish and delight in the simplicity of.

2009-10-13T22:01:00.000+01:00

I'm pink. Not as brightly coloured as the animated panther nor as vibrant as a flamingo. Just a natural, human, pink. I hadn't realised just how ashen I had come to look lately until I looked in the mirror this evening but there's been a definite change. Today was blood transfusion day.

As with many things in my life at the moment this was a first and for those that have not had the experience of a blood transfusion I can liken it most to long haul air travel.

The aim of the transfusion was to repopulate my blood with a decent quantity of red blood cells. Their prime purpose: carrying oxygen. Whilst the transfusion does nothing towards curing my disease if I am going to withstand the treatment ahead of me then I need to be as well as possible in every other respect and this was a step in that process.

Checking in was a relatively simple process and my hand luggage contained the same ingredients it would have done if I was getting onto a plane: iPod; magazines; a book. Having made my way to my seat - one of two available in a room at the end of a Day Surgery ward - I settled in for the six hour ride ahead of me.

The journey began with a needle being inserted into my arm. This took two attempts whilst the doctor got to grips with a curvy vein and my, apparently, firm skin. Once she had found a straight line to go in though we were all set. The "scratch" is no worse than a standard blood test and no sooner was it in than the needle was replaced with a thin plastic tube. Once done I was left with what was essentially a small plastic tap taped to my arm.

As yet the blood had not arrived so to keep the tube open a syringe of saline solution was injected into the tap.

Imagine if you will putting your hand into snow. The feeling of cold on your skin slowly ebbing into the flesh of your hand. This saline injection was much the same only inside out. A feeling of cold but inside my hand whilst the outside remained warm. Quite, quite weird!

As I was still contemplating this somewhat odd sensation a bag of blood arrived and was quickly hooked to a drip stand and plugged into the new plumbing in my wrist. Having thought the saline a strange experience this, my first use of someone else's blood, seemed even more bizarre. Physically my whole arm began to feel warm and yet cold at the same time. It is not a painful experience or even necessarily unpleasant but you cannot help feel an awareness that something new is slowly swilling around your arm and into the rest of your body.

By the time I had exhausted my first bag my arm had recovered from the surprise nature of it all and the day continued as it would have done if I were on a flight: I was periodically asked if I wanted tea or coffee; lunch came in a small box; some of it was edible; the chair I was in became marginally uncomfortable; and I began to tire of the reading material I had brought with me. Only occasional flurries of activity on the main ward distracted from the mind numbing tedium of it all.

I had no choice but to reach into my luggage and fish out my iPod. After all I still had two more bags to go!

2009-10-12T20:14:00.000+01:00

It's Monday evening and my body temperature is 37 degrees. I know this because my wife has just measured it as she has done four times a day since Friday.

This time last week I had an incurable disease but did not know it. After work we ate dinner and then snuggled. Watching TV under a blanket as the early autumn wind and rain lashed against the old Victorian windows of our flat.

This evening we have done the same but some things are different: It is not raining outside; I have taken a break from catching up on the weekend's TV to start a blog; and the knot in my stomach reminds me that I have Leukaemia.

I have never written a blog before but figure that if ever there was a time then this is it. I'm hoping that it will serve a number of purposes. I would like it to be a place for my mind to deal with what is happening now and what is to come; I hope that friends will stop by to see how I'm doing when I am unable to keep in touch; and I hope that it serves as a useful trail of breadcrumbs for anyone else who has to walk this difficult path behind me.

At the moment I know very little about what I have but hope to fill in the blanks as I go. What I do know is it's name: Hairy Cell Leukaemia. I also know that it is rare and incurable.

That said it is, I am told, treatable.

For now though I have no immunity to infection. The common cold has become something to seriously worry about, avoiding crowds is the aim of the game so thankfully I am able to work from home.

Popping into the office today to pick up my files however was very strange. Most had only been told that morning and it was hard to tell how much of the hustle and bustle was business as usual and how much was a cover for any shock they may have been feeling. This whole thing is completely out of the blue. I'm a fit and active 35 year old high on life and looking forward to the birth of his first child. It's possible that some of the guys I work with were in the odd place filled with shock and bemusement that i was in last Wednesday when my doctor gave me the news. Maybe they too will wake up the following day wondering if it wasn't all just a weird dream.