Well THAT'S annoying!

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

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

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

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

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

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

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

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

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

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

Five years!

Where did the time go?

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

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

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

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

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

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

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

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

I Hate Checkups

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

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

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

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

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

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

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

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

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

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

Don’t wait.



  

Dryathlon

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

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

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

http://www.justgiving.com/RichGoesDry

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Click HERE for more information. 

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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


http://www.sponsormetoshine.org/hairycell


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


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

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

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

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

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

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

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

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

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

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

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

“One more day”.