tag:blogger.com,1999:blog-7103907986441976802024-03-08T19:17:26.789+00:00Hairy CellA journal of my life with Hairy Cell LeukaemiaRChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.comBlogger53125tag:blogger.com,1999:blog-710390798644197680.post-75892933941730868072016-05-26T20:02:00.000+01:002016-05-26T20:02:32.554+01:00Well THAT'S annoying!<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Although there's no evidence of disease in the blood it <i>may </i>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. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Oh joy, a bone marrow biopsy and a CT scan are now in the diary for next month.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. </span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com4tag:blogger.com,1999:blog-710390798644197680.post-36282124450604627792015-12-07T22:11:00.002+00:002015-12-07T22:11:48.774+00:00<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">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.</span><br />
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RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-34813385143602378602015-02-18T19:05:00.000+00:002015-02-27T19:06:18.688+00:00<br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Five years!</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Where did the time go?</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <a href="http://www.shinecancersupport.co.uk/">Shine Cancer Support</a> 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. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I now know of two </span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Its hard now to pick the next landmark to aim for: <i>The Next Check-Up</i> seems a little short term; <i>Giving Emma Away</i> 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.</span><br />
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<span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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. </span><br />
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<span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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. </span><span style="font-size: 13px;">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.</span><br />
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<span style="font-size: 13px;">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. </span><br />
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<span style="font-size: 13px;">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. </span><br />
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<span style="font-size: 13px;">Don’t wait.</span><br />
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<span style="font-size: 13px;"> </span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-19950196947059984192014-01-03T09:00:00.000+00:002014-01-03T09:00:12.016+00:00Dryathlon<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<img height="320" src="http://krissacurran.files.wordpress.com/2012/01/pint-glass.jpg" width="320" /><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">To mark the "four years since treatment" milestone I've decided to take on Cancer Research's Dryathlon challenge.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">http://www.justgiving.com/RichGoesDry</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">And remember just how expensive drinks are here in London. £20 a pint! :)</span><br />
<br />RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-78152647398123129892012-05-24T14:46:00.001+01:002012-05-24T14:46:54.435+01:00Sibylla 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.<br />
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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. <o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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.<o:p></o:p></div>
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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. </div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com1tag:blogger.com,1999:blog-710390798644197680.post-11239354377817597182011-07-16T22:28:00.001+01:002011-07-16T22:33:31.480+01:00It 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.<br />
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</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>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.</div><div><br />
</div><div>The relief was astonishing and, pleasantries exchanged, we soon found ourselves back out in the sun phoning relatives and texting the news.<br />
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later the 'no drink on a school night' rule was abandoned just this once.<br />
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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.<br />
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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.</div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-35977304624405888332011-07-16T09:01:00.004+01:002011-07-16T09:10:02.947+01:00<object align="middle" classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000" codebase="http://fpdownload.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=8,0,0,0" height="275" id="magicplayer" width="421"><param name='allowScriptAccess' value='always' /><param name='movie' value='http://magic.sc-streaming.com/player/shell.asp?campaignID=272_29854' /><param name='quality' value='high' /><param name='allowFullScreen' value='true' /><param name='bgcolor' value='#ffffff' /><embed src='http://magic.sc-streaming.com/player/shell.asp?campaignID=272_29854' quality='high' bgcolor='#ffffff' width='421' height='275' name='shell' align='middle' allowFullScreen='true' allowScriptAccess='always' type='application/x-shockwave-flash' name='magicplayer' pluginspage='http://www.macromedia.com/go/getflashplayer' /></object><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Please sponsor me to walk a marathon at night for Cancer Research UK. There is still so much more to do.</span><br />
<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Click <a href="http://bit.ly/l4MnbO">HERE</a> for more information. </span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com1tag:blogger.com,1999:blog-710390798644197680.post-58562590351013010582011-07-03T21:25:00.003+01:002011-07-03T21:29:04.292+01:00<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I don't like to beg, but I'm going to. </span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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. </span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">While you're asleep.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">In October this year I am going to walk a marathon at night in aid of Cancer Research.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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. </span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I cannot think of a more appropriate metaphor for dealing with cancer than an extraordinarily long walk through London, at night, in the cold.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> </span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">For the sake of a just a few pounds from you and astonishingly sore feet from me this seems like a pretty good deal.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">As is the norm these days you can sponsor me online...</span><br />
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<a href="http://www.sponsormetoshine.org/hairycell"><span class="Apple-style-span" style="color: white; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: large;">http://www.sponsormetoshine.org/hairycell</span></a><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">..or stick to the more traditional route of handing me some money in person.</span><br />
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<span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-25215505118600478182011-04-14T00:05:00.001+01:002011-04-14T00:06:27.484+01:00<div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">This is all part of what I call my “one more day” plan. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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.</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><o:p></o:p>“One more day”.</span><o:p></o:p></div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-1423147727596907432010-10-07T09:28:00.003+01:002010-10-07T13:00:51.161+01:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_U2bLh3zntvE/TK2Gvswk2bI/AAAAAAAAAQQ/sEOYYBXn78E/s1600/P1020169.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="http://2.bp.blogspot.com/_U2bLh3zntvE/TK2Gvswk2bI/AAAAAAAAAQQ/sEOYYBXn78E/s400/P1020169.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5525220471880341938" /></a><p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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.” <o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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. <o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;"> This year I fully intend to immerse myself in the cold seasons; to be with people.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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. <o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">Not a day goes by when I don’t worry about dying of cancer and this is a cycle I need to break.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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 </span></span></span><b><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">chances</span></span></span></b><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;"> 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.<o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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. <o:p></o:p></span></span></span></p> <p class="MsoNormal"><span class="Apple-style-span"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: small;">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. </span></span></span><o:p></o:p></p> <p class="MsoNormal"><span style="mso-spacerun:yes"> </span><o:p></o:p></p>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com3tag:blogger.com,1999:blog-710390798644197680.post-42980256646667145042010-07-16T21:49:00.009+01:002010-07-18T22:47:22.058+01:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_U2bLh3zntvE/TEN2UFTJOiI/AAAAAAAAAPY/_VpjzkOqo-A/s1600/_DSC7574_800.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="http://3.bp.blogspot.com/_U2bLh3zntvE/TEN2UFTJOiI/AAAAAAAAAPY/_VpjzkOqo-A/s400/_DSC7574_800.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5495366057714072098" /></a><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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. </span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">Thank you all. And please feel free to keep in touch. </span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">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.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">Good health to you all; and thank you.</span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';"><br /></span></span></div><div><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">"</span></span></i><span class="Apple-style-span" style="line-height: 26px; "><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">We’ll be washed and buried one day my girl</span></span></i></span></div><div><span class="Apple-style-span" style="line-height: 26px; "><i><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"></span></span></i></span><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">And the time we were given will be left for the world</span></span></i></div><div><i><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"></span></span></i><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">The flesh that lived and loved will be eaten by plague</span></span></i></div><div><i><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"></span></span></i><i><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">So let the memories be good for those who stay"</span></span></i></div><p style="text-align: right;outline-style: none; outline-width: initial; outline- margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border- line-height: 26px; color:initial;"><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"></span></span><span class="Apple-style-span" style="line-height: normal; "><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="font-family:'lucida grande';">– Mumford and Sons</span></span></span></p><div><br /></div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-2215331109546737202010-06-23T18:03:00.001+01:002010-06-25T15:18:17.451+01:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_U2bLh3zntvE/TCS5ClXGQBI/AAAAAAAAAPQ/5wYgEhtgR3U/s1600/P1010932_800.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="http://3.bp.blogspot.com/_U2bLh3zntvE/TCS5ClXGQBI/AAAAAAAAAPQ/5wYgEhtgR3U/s400/P1010932_800.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5486713700083974162" /></a><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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 </span></span><span class="Apple-style-span" style="line-height: 18px; -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; "><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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. </span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><br /></div></div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-38698014423464623602010-06-10T21:47:00.007+01:002010-06-11T09:47:28.590+01:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_U2bLh3zntvE/TBH4Biwg-wI/AAAAAAAAAPA/MFLAuBc0u7c/s1600/P1010900_800.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 400px; height: 225px;" src="http://2.bp.blogspot.com/_U2bLh3zntvE/TBH4Biwg-wI/AAAAAAAAAPA/MFLAuBc0u7c/s400/P1010900_800.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5481434926880455426" /></a><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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. </span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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. </span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'lucida grande';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com4tag:blogger.com,1999:blog-710390798644197680.post-51647800204272782412010-03-02T22:29:00.000+00:002010-03-03T11:24:34.063+00:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_U2bLh3zntvE/S45D3OVw6RI/AAAAAAAAAOU/n0XM0gBhyiU/s1600-h/P1010414.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 400px; height: 225px;" src="http://1.bp.blogspot.com/_U2bLh3zntvE/S45D3OVw6RI/AAAAAAAAAOU/n0XM0gBhyiU/s400/P1010414.jpg" alt="" id="BLOGGER_PHOTO_ID_5444363615558756626" border="0" /></a><span style="font-size:85%;"><span style="font-family:lucida grande;">There just simply hasn't been the time to write. For that I apologise.<br /><br />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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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. </span><br /><br /><span style="font-family:lucida grande;">For the first time in nearly six months Leukeamia is not constantly at the forefront of my mind; Living has taken over. </span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-70227514118706718422010-02-10T17:04:00.007+00:002010-02-11T16:48:30.065+00:00<span style="font-size:85%;"><span style="font-family:lucida grande;">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".<br /><br />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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">Although I have been allowed out, I am not in the clear just yet.<br /><br />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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.<br /><br />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.</span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com4tag:blogger.com,1999:blog-710390798644197680.post-54954024912648771552010-02-04T21:22:00.002+00:002010-02-04T22:17:36.774+00:00<span style="font-family: lucida grande;font-size:85%;" >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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Having dreams is the only way to get by in here. Even if they will never come true.</span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-74288498788254153532010-01-30T18:03:00.004+00:002010-01-30T18:21:33.487+00:00<span style="font-size:85%;"><span style="font-family:lucida grande;">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."</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">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.</span><br /><br /><span style="font-family:lucida grande;">Until then I have a lot of sleeping to do.</span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com5tag:blogger.com,1999:blog-710390798644197680.post-62623604073346652302010-01-29T20:29:00.002+00:002010-01-29T20:46:30.806+00:00<span style="font-size:85%;"><span style="font-family: lucida grande;">Well I didn't get out.</span><br /><br /><span style="font-family: lucida grande;">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'. </span><br /><br /><span style="font-family: lucida grande;">"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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.<br /><br />I may even wear them to sleep.</span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-46668363821370775082010-01-29T13:22:00.002+00:002010-01-29T13:53:33.728+00:00<span style="font-size:85%;"><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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.</span><br /><br /><span style="font-family: lucida grande;">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. </span><br /><br /><span style="font-family: lucida grande;">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. </span><br /><br /><span style="font-family: lucida grande;">This is not where I want to spend another weekend.</span><br /><br /><span style="font-family: lucida grande;">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.</span></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com0tag:blogger.com,1999:blog-710390798644197680.post-73389287197355935922010-01-20T18:58:00.003+00:002010-01-20T19:14:44.249+00:00<span style="font-size:85%;"><span style="font-family: lucida grande;">The cannula has just been removed from my right arm. It is a process that is by far the most painful part of my entire treatment mainly because cannula's require so much sticky tape and I have such hairy arms. The plastic tube is now replaced with a mild sting that over the next few days will turn into an itchy little mound as the hole begins to heal. For now my days of intravenous antibiotics are behind me. I can now look forward to washing with two hands and brushing my teeth with the right.</span><br /><br /><span style="font-family: lucida grande;">I can also look forward to going home.</span><br /><br /><span style="font-family: lucida grande;">Tomorrow, at some point, once doctors have signed the right forms and the pharmacy have supplied me with a big bag of pills I'll be putting on jeans and a t-shirt and heading home. My neutrophils are now at 1700.</span><br /><br /><span style="font-family: lucida grande;">The day started gloomy on the outside and once again gloomy on the inside as I contemplated another twenty four hours in my room. I had pretty much lost all enthusiasm for doing anything other than napping or watching the pigeons on the roof outside. It is not that I was short of things to do, to occupy my mind, I was just sick of this little room. I still am, but at least there is a light at the end of the tunnel.</span><br /><br /><span style="font-family: lucida grande;">It is too early to tell whether the treatment has worked, whether any hairy cells lurk in my marrow unzapped by the Cladribine injections that started what feels like a lifetime ago. I am guessing that, as my counts were at zero for a few days, the treatment got all of the ones in my blood. Only another bone marrow biopsy will tell whether it was 100% successful. That will come in a few weeks and unpleasant as it is I am not dwelling on it now. My freedom is the only thing on my mind and it is hard to decide just what I want to do first when I get out other than run from room to room in our flat just because I can. Making a decent cup of tea and cooking a proper meal will certainly be high on the agenda. </span><br /><br /><span style="font-family: lucida grande;">Not before I've had a proper shower though.</span><br /><br /><span style="font-family: lucida grande;">There's just so much I can do its overwhelming; I think its time to dig out that list I was making.</span><br /></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com6tag:blogger.com,1999:blog-710390798644197680.post-75980568483755719092010-01-18T21:08:00.004+00:002010-01-18T21:52:26.708+00:00<span style="font-size:85%;"><span style="font-family: lucida grande;">Well the usual Monday team meeting followed by a review of current projects and then a plan for the week probably happened but once again I was not there. I never thought I'd long for Monday mornings at the office. More awake today than I have been I did check my emails and I even Skyped with a few colleagues but soon fatigue overcame me and having found the optimum tilt on my bed I napped while I waited for porridge to arrive.</span><br /><br /><span style="font-family: lucida grande;">Being a Monday morning the hospital was full of more bustle than it had been at the weekend. There's a greater concentration of doctors whizzing around and more specialists brandishing the tools of their trade. A cheery phlebotomist breezed into my room not long after the remnants of my porridge had been whisked away, replaced by a mug of tea. Armed with a large 'sharps bucket', a few empty vials, and an elastic tourniquet band with vampire bats printed on it, she prepared to take this mornings bloods. Two vials rapidly extracted and she fluttered away.</span><br /><br /><span style="font-family: lucida grande;">For those not nerdy enough to have googled it yet what I am stuck waiting here for is a decent Absolute Neutrophil Count. In a microlitre of normal blood, that is one cubic millimetre, there should be between 1,500 and 2000 neutrophils. Below 500 and you are considered neutropeanic. C'est moi! </span><br /><br /><span style="font-family: lucida grande;">On Friday I had zero. </span><br /><br /><span style="font-family: lucida grande;">By Saturday I had 30. </span><br /><br /><span style="font-family: lucida grande;">Today, ladies and gentlemen, I can announce that I have 400! Cue subdue fanfare.</span><br /><br /><span style="font-family: lucida grande;">I take this two ways: Firstly it means that I cannot go home so I am stuck with my room and the 'one hand wash' for a while yet. What it also means however is that the reboot of my immune system has started, my body has found itself able to make some new white cells and they are slowly coming out and doing their thing. My sore throat is still there but much subdued, inspection with a Maglite earlier today by one of my doctors revealed the presence of puss. Not something I would ordinarily be happy about let alone share on the internet but it is a sign that my body is fighting back. My cannula holes still itch but are slowly disappearing. Today at a cellular level wounds have been cleansed and new flesh created. This is, whenever it happens, amazing, in the true sense of the word, but today it is also exciting.</span><br /><br /><span style="font-family: lucida grande;">My doctors both expressed genuine excitement at this weekend's change being a team that really invest in the people they are treating rather than adopting a them versus the disease approach whilst being annoyed by the human that's in the middle. I really cannot fault the care I have had here although I think it is less my charm and more that my wife is heavily pregnant that helps curry favour with the nurses.</span><br /><br /><span style="font-family: lucida grande;">I have no idea how the growth of neutrophils is supposed to work. It may be linear, logarithmic, or just completely wayward. As such I have no idea how long before I have 500 needed to leave neutropenia or even the magic 1000 that may secure my release. At least we are back into normal weekdays now so they will be counting them every day. </span><br /></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-47928767606029032332010-01-17T20:23:00.002+00:002010-01-17T22:17:59.785+00:00<span style="font-family: lucida grande;font-size:85%;" >Yesterday was spent mainly sleeping and in the moments I was awake I was not inclined to write. Late Friday I started to get a sore throat, it worsened through the day yesterday and come this morning it felt like I was swallowing razorblades. A doctor who came to see me on Saturday had a look but did not seem overly concerned. "The inside of your throat is a little red, but there's no puss." he offered cheerfully. Before then adding that I couldn't make puss even if I wanted to.<br /><br />The throat is now calming down and the used cannula holes in my arm that yesterday lay dormant have now swollen a little and itch like buggery. I'm hoping that these are all signs that I have an immune system that is waking up. That neutrophils are being made and that they are slowing swilling round my body doing stuff, fighting infection, repairing wounds. I could very easily, of course, be wrong. I have no medical training. No idea about molecular biology. I am merely clutching at straws, hoping that tomorrow they'll find cause to release me back into the wild.<br /><br />In the absence of any hospital solution my water is now being brought in by my wife. Glass Perrier bottles containing cool, but once boiled, tap water. I simply couldn't stomach the sterile water they were giving me and am sure that it had enough plastic content to induce something even worse than what I have already. To not drink anything could damage my kidneys as they try to dispose of a gazillion dead hairy cells and a noxious concoction of anti-viral and antibiotic drugs. If your pee starts looking like coca cola it really is time to hydrate some more.<br /><br />My brother has sent in his PSP so what with the laptop, camera, audio recorder, phone, broadband stick, and Bose headphones I now have enough kit here to start up a small electrical retailer. Given that I cannot leave the room I am pretty confident however that none of it will get swiped. If I was on an open ward I would probably be sleeping with it all under my blankets. Having moved into my room in a small rucksack I think I am going to need a suitcase when it finally comes to moving out.<br /><br />Lack of stimulation then is not my real cause of boredom. It is lack of connection, connection with the outside world. I watch people pass in the car park below yet feel no association. It has snowed, rained, and been sunny whilst I have been in here and yet my room remains at a constant temperature. The only means of escape I have found is to slowly compile a list of the things to do when I get out of here. The top ten simple things.</span><span style="font-size:85%;"><br /></span>RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com2tag:blogger.com,1999:blog-710390798644197680.post-40327606910174549042010-01-15T19:50:00.004+00:002010-01-15T20:08:36.623+00:00It's our one week anniversary, me and my room and it is a relationship that will extend until Monday at least. A lack of neutrophils in this morning's counts means I'm spending another weekend away from home.<br /><br />Temperature is still down and, I feel, down for good. The supplements and injections keep coming and thus far there have been no really adverse reactions. My bones ache every now and then, particularly in my legs; it passes after a minute.<br /><br />A burst pipe up the hill from here has cut supplies to parts of the hospital including the one tap that offers filtered water to the neutropenic. I now have expensive sterile water, ordinarily reserved for washing out wounds, that tastes exactly like the bottle from which it comes. Making it far less enjoyable and much harder to keep up my high water intake.<br /><br />In the back of my mind I think I had hoped to be leaving here today so an edge of disappointment tinges the air of boredom. Come on little neutrophils get working, there's a big world out there and I would like to get back into it.RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com3tag:blogger.com,1999:blog-710390798644197680.post-37008507228414081112010-01-14T21:26:00.007+00:002010-01-15T09:01:47.104+00:00They say that cancer changes your outlook on life. I guess that premise could be broadened to include any event, illness, or disaster that highlights to you your own mortality; brings home just how little time we all have to offer; and comes as a stark demonstration as to just how fragile all of our holds on life really are.<br /><br />Today I am still feeling physically fine. Temperature is still down. The recovery, it would appear, has started although there is still no light at the end of this immediate tunnel: no sign of my exit from this room.<br /><br />In addition to the pills I still have to take and the antibiotic drips I am still on, a number of other ingredients have been added to my daily input. Yesterday I was given a small bottle of nutrient rich milkshake, 'Fruits of the Forest' flavour. Two or three of these turned up throughout the day and none tasted like fruits from any forest I have ever been in. This morning a strawberry one turned up and tasted exactly like the previous ones and exactly unlike strawberries. My latest was chocolate. This did taste different. Very different in fact. And if you held it in your mouth and concentrated really, really hard you could just, just imagine that it might once have been near something chocolate.<br /><br />Along with some of these bottles comes a small round pot, about an inch tall and half as much wide, of a purple substance. At first I thought it was a taster of the stuff inside the bottles so just drank it. Further investigation has revealed that it is a collagen supplement. For those of you now expecting me to return from hospital with lush, pouting lips prepare to be disappointed. Applied in a skin cream, lipstick, or even eye shadow collagen is useless. A waste of money. It does nothing. Ingested however it can benefit skin growth, the formation of tendons and increased joint mobility. I assume therefore that this will help those bones now bereft of marrow to start working things out or maybe it is just to counter the terrible effects being in the same room for a week can have on ones skin. I guess the NHS are aiming for the former.<br /><br />I have not invested any time in investigating just where anyone would get collagen from to add to a supplement. As it is not something derived from plants, nor something we produce in excess as humans and are want to give away I'm guessing it comes from animals. Animals that may not have openly offered it up and from parts of them that only celebrity Devonshire chefs would ever consider eating. I'm happy to down a shot of it twice a day though; it tastes a lot like fruits of the forest.<br /><br />Also added to my regime is a shot of a growth hormone.<br /><br />No, I am not going to come out of this ordeal taller any more than I am going to have fuller lips.<br /><br />This hormone is one naturally produced in healthy bodies, often when were unwell, and in my case is aimed at encouraging any neutrophils made since chemo that are loitering around in my now roomy bone marrow to come out and start earning a living. Ordinarily new cells come out of marrow because its full of even newer ones and theres not much room. With enough room in there for them to swing a cellular cat they need a little coaxing.<br /><br />Last on my list of rare, if not new, experiences, for today at least, was a shower. Enjoying its warmth for a good twenty minutes I emerged feeling human again. Taking them every morning before work it is easy to regard them as the norm and forget how great a restorative effect they have, not just on the body, but also on the mind. Without them we soon decend into a smelly heap. Our minds never cleansed, as time goes on, become more aware of how our skin feels getting dirtier, how our clothes no longer hang on our bodies without sometimes sticking, and how, with human vanity as it is, that others may perceive us as lesser people.<br /><br />Having Cancer does change your outlook on life. It makes you reassess that which is important and that which is trivial. From now on any working day that starts with a shower is a good day; anything else from there on is just a bonus.RChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.com3