Saturday, 16 July 2011

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. 

Sunday, 3 July 2011

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...

..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.

Thursday, 14 April 2011

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”.