Well THAT'S annoying!

Back in January, six years after treatment, my regular checkup showed that my neutrophils had dipped below the magic number that is deemed 'normal'. Like all of the numbers that come out of a full blood test they go up and down over time but they should stay within the bounds of normal. 

My neutrophil count has gone up and down but the trend has been downward for a while. Slowly, very slowly downward. So, back in January, having gone below the normal line a full test was run on my blood sample. 

The test looks at every cell in the sample essentially hunting for the hairy ones and after a nail biting week of waiting for the result: All Was Clear.

But just to be sure my regular six monthly check was moved to a four monthly one. That check was today and once again those pesky neutrophils have dropped in number. Two 'red' results in a row means time for more tests. 

Although there's no evidence of disease in the blood it may be in the marrow. So that's where we're going to have a look. There's also no external evidence of spleen growth but we're going to have a look inside there too. 

Oh joy, a bone marrow biopsy and a CT scan are now in the diary for next month.

Even though its the result I expected, even though I knew it might come back one day, I still had a little hope that life would defy my own expectations and I'd eek out a longer remission.

I'm not symptomatic: I don't get ill when the rest of the family do; I run 40k most weeks; there are no night sweats; and I'm not losing weight. If it is back then it's in its very early stages and I'm hoping that my levels of fitness will help me through what ever comes next.

Its still annoying though and I expect a rollercoaster of emotions for all over the next month or so. I'm sorry to say, for a while at least, this blog might see some renewed action. 

Here's a video, of me obviously, from a Shine Escape earlier this year. Shine is a great charity support cancer sufferers of working age and it is a great privilege to be a part of the work they do.

Five years!

Where did the time go?

Nestled in the depths of my wallet, with a loyalty cards from the local curry house and the local airport is my NHS Prescription Charge Exemption Card. In the UK anyone who has treatment for cancer, or for the effects of cancer, can apply for one of these cards and once you have one all of your prescriptions are free, no matter what the prescription is for.

It took me a while to find this out, no one in the NHS told me, and it was on the Macmillan website that I found the magic form number (FP92A) that I had to ask for. I received my card in the post the same week I started my chemotherapy and was daunted by the expiry date of 2nd January 2015.

Back then, very ill and very scared the year 2015 seemed impossibly far away. A time that I daren't contemplate actually reaching. Outliving my Prescription card was one of the targets I set myself whilst bored out of my mind in the isolation room that became my home for much of the following months.

Immediately after my treatment, along with my Irradiated Blood transfusion Card, my Free Prescription Card, took pride of place in my wallet. Used to score the mountain of antibiotics I took for six months and then hay-fever medication through the summer because once my leukaemia had gone my hay-fever came back.

Much like the discomfort, thoughts and worries of that time, slowly and almost unnoticed these cards have drifted into the background as the years have passed. Replaced by work ID cards, credit cards, and a photo or two of Emma as a toddler the corners of which are now getting dogeared and worn.

She's a proper person now with thoughts and opinions and endless, endless chatter. Her birthday this week is a reminder of exactly how long I've been out of hospital. The day she was born, three days after I got out, looking forward to now seemed like an impossible eternity; now looking back to then seems like only a moment has passed.

In those five years I've walked 27 miles through London at night to raise money for Cancer Research; I've spoken at Macmillan events of how they helped me through diagnosis and treatment; I've met the amazing founders of Shine Cancer Support who are working to make the lives of us 'younger' cancer sufferers and survivors at least a little better; and I've been in a room with more than a 100 other Hairy Cell survivors one of whom was a spritely 73 years old. 

I now know of two septuagenarians, still living, who were diagnosed with HCL in their 30's. Surviving from a time when today's treatments were to them probably also a distant and seemingly impossible.
Its hard now to pick the next landmark to aim for: The Next Check-Up seems a little short term; Giving Emma Away a little far out. Right now I can't think of specific targets to hit, I have no bucket list. For now then I look forward to experiencing more of the impossible and also more of the ordinary: Sunsets, rain, wine, friends and more of that endless, endless chatter.

I Hate Checkups

I thought that as time went on they would get easier and I’d be more relaxed, because each time I go I get good news, but actually the opposite seems to be the case. The more time that has elapsed between my treatment and the checkup the more likely I feel that those hairy cells will finally, and inevitably, be back.

Once the appointment appears a week away in my diary, every pain, twinge, ache, and feeling of tiredness is taken as confirmation that it is back. My last checkup was in December when like everyone else I had a cold and I was convinced that the sore throat I had was cancer. The time before that I it was something else.

I make the inevitable mistake of Googling the symptoms of my phantom cancer and, as it happens, if I chose the results carefully I get absolute confirmation that my suspicions are true. It is amazing what the mind can do to exaggerate sensations in one part of your body when you convince yourself that something is wrong when in reality nothing is.

This time round I am focussing not on a part of my body but on my historical blood test results. When I was diagnosed my white blood cells were off the charts and I had hardly any reds. Looking at my stats for the last few years (since 2011) my reds have been on a gradual decline whilst my whites are on the up. 

These are stats my doctor has and in isolation he's always happy with them as they are within the normal range. Maybe this is just a slow return to normal after wiping out my whites with chemo and topping up the reds with transfusions. All questions I’ll be asking later today but right now, and for the last few sleepless nights, I can’t help seeing it as a slow and inevitable creep of leukaemia back into my system.

As usual when approaching a checkup diary dates, and meetings accepted for after the appointment are always done so with an air of tentativeness. There’s always the thought at the back of my mind that that may not happen or that life at that point will be viewed with very different priorities if, seemingly at the flip of a coin, life takes a bit of a detour.

I’ve been wondering over the last few days what I’ll do differently if today I find out I have cancer again. I’ve come down to the seemingly obvious: drink less alcohol, spend more time with Emma, spend more time with friends, enjoy the simple things, and go out and exercise more. A lot more.

Quite quickly I asked myself why I would have to wait for a bad diagnosis to do those things if truly I believe them to be the important changes I could make to the way I live now. In fact why should any of us plod through life from day to day and only correct our behaviours to what we truly believe to be important when something dramatic happens to us or someone we love.

So I’m making those changes now. The summer holidays allow me to sit up chatting to Emma while she falls asleep each evening. And I ran along the river yesterday -  which was I’ll confess a knackering experience - and I’ll do it again tonight. 

Its not been an easy week keeping the fear to a minimum but whatever the result today I feel the battle is back on. And if there is anything in your life that you’d change if you got bad news today then change it now anyway. 

Don’t wait.



  

Dryathlon

To mark the "four years since treatment" milestone I've decided to take on Cancer Research's Dryathlon challenge.

This isn't going to be easy as I've got a number of overseas trips AND a sales conference on the cards for this month. All of which usually involve a tipple or two.

Every time I would have bought a drink of one type or another I'll be donating the money to Cancer Research. If you'd like to not buy me a drink too then please go to my Just Giving page.

http://www.justgiving.com/RichGoesDry

And remember just how expensive drinks are here  in London. £20 a pint! :)

Sibylla would have been proud; at least I hope she would. I was trying my damnedest to pull off a half decent "Sun salutation" in the middle of Regents Park whilst being filmed by a Macmillan film crew. Having only ever done yoga in the privacy of my own lounge, I find it a relaxing introduction to the day but I'm sure my technique and posture is far from that achieved by a true yoga junky typically to be found, at least in most clichés,  balancing on one leg, the other behind their head in perfect pose on a tranquil beach; the sea lapping gently against the distant shore.

It has been sometime since I posted anything on this blog although it still seems to still get regular traffic. For the benefit of those whom I don’t keep in touch with regularly or those that have found this site in the hunt for information on HCL having just been diagnosed then, by way of an update, I can happily state that two years on from treatment I am still in remission.

Although this is, what I term ‘ the scary year’ – that being the one where most HCL survivors seem to relapse or get diagnosed with a secondary cancer – I sometimes find almost a whole day can pass with me not having thought about it. Slowly, slowly, the whole thing ebbs away into the background and ceases to become the most central thing on one’s mind.

There are two key reasons for this: One is having “A Small”. By far one of the most distracting things anyone can introduce into their life is a child. In my case a Daughter but I’m assuming that Son’s also work. As a distraction from cancer and its related fallout these are ideal to have around but being complex to create, and expensive to maintain, they are not for everyone.

The second reason for my almost constant optimism, and one that is far more accessible to anyone who has gone through chemotherapy, is exercise. Regular exercise. I’ve said it before and I’ll say it again. Nothing has helped my life after chemotherapy with regard to wellbeing and especially mood more than exercise.

Since my treatment finished I’ve been in regular contact with a number of cancer related charities, mainly Macmillan. I’ve reviewed books that might be used by others going through similar situations. I’ve read a few leaflets and documents as they go through the publishing process to offer thoughts on how useful they might be or how, as far as I’m concerned, they might be improved. I’m one of many, many people who do this and if you are interested it is worth signing up as a Macmillan Voice to help out where you can.

As part of this contact with Macmillan I, along with two others, were interviewed for a video on physical activity and how it had helped them in their recovery from cancer treatment. This video was filmed some time ago as part of a much wider campaign on staying active that, for all the effort that went into it, sadly got lost in the press under the sheer weight of the news covering riots that  struck a number of towns and cities across the UK last summer.

Some of that campaign appears to be being re-launched and along with it a cut of the video I was interviewed for. Macmillan’s YouTube channel is well worth checking out and if you’re just trying to come to terms with a diagnosis then their website and leaflets contain some excellent information. Even if they are not always very good at advertising the fact.

One of the people I don’t keep up with regularly is Sibylla and I hope she is one of the handful of people who still pop by and check this out. If only to see me trying to do her proud by pulling some nifty yoga moves in Regents Park as part of this video. Years after being introduced to it at her fantastic retreat in Plymouth I still do it, although not as regularly as I’d like. I came upon yoga long before I was diagnosed and yet it was the one activity I felt I could still do even on my weakest days.   

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.

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. 

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.

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”.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.