Thursday, 24 December 2009

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

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

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

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

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

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

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

Monday, 21 December 2009

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

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

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

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

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

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

Saturday, 12 December 2009

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

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

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

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

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

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

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

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

Friday, 4 December 2009

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

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

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

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

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

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

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

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

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

Thursday, 19 November 2009

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.

Saturday, 14 November 2009

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.

Saturday, 7 November 2009

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.

Saturday, 31 October 2009

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.

Monday, 26 October 2009


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.

Friday, 23 October 2009

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.

Tuesday, 20 October 2009

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.

Sunday, 18 October 2009

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.

Friday, 16 October 2009

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.

Thursday, 15 October 2009

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.

Wednesday, 14 October 2009

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.

Tuesday, 13 October 2009

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!

Monday, 12 October 2009

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.