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.