Thursday, 19 November 2009

A glass of red wine. To celebrate.

It won’t cure me but it will help mark a small success of sorts. This afternoon saw another blood letting session followed by a rundown of the results with my Consultant. Work has occupied my mind over the past weeks but yesterday evening I was noticeably anxious. It’s not that there is anything to fear. There’s no pain; no discomfort. But in getting on with life sometimes I forget where I am.

Often normality begins to seep into my extraordinary world. I forget. A hospital day is a reminder of how things are and what my reality is.

Three weeks ago, at the last meeting, my red blood cells and haemoglobin had stayed steady but my whites were on the increase. Were the increase to continue its possible that my chemotherapy would have been brought forward as such I’ve been marking time this week wondering if the run up to Christmas was going to be very different this year.

After a while in the waiting room, catching up on last month’s issue of The Word, the results were in. The meeting was quick and to the point and pretty much standard procedure. I report on me, then I get a report on my blood.

For me I still feel fine, if I hadn’t been to the doctor a few months ago I still may not know. My temperature is level. No fever, rashes, infections. I haven’t had a night sweat since the week I had my transfusion. The only telling sign of my disorder is that my spleen aches if I eat to much, squeezed against my ribs by my stomach, but its like a dull stitch. In an ordinary world I would have put it down to a pulled muscle from sitting awkwardly all day rather than that second (possible third) helping of dinner I just couldn’t resist. My appetite has certainly NOT been affected.

And so to the bloods. My red cells are holding steady, not giving up space to those hairy bastards. The hairies themselves are also holding level. This is very good news. The only count that’s down is my haemoglobin, it’s job is to bind oxygen to the red cells and dish it out as they float around my body.

So I’m definitely not getting some pre-Christmas chemo. What I am going to get is another blood transfusion. Time to top up the iPod ahead of next week. By rights I should be flying to Latvia to close off a project I’ve been working on all year but instead of taking that flight I’ll spend the day sitting in a chair staring out over a Day Ward. It will be less stressful though and it’s an excuse to get out but sometimes I miss being part of the action. Being normal.

Maybe my morning dose of beetroot juice is doing something, or maybe its the meditation, maybe its none of these or both of them combined. Whatever the reason my hairy cells have ceased the expansion of their empire for now and thats the best I can hope for at the moment so I’m enjoying a glass of red wine to celebrate. No matter what you think you’ve read though it really isn’t a cure.

Saturday, 14 November 2009

Even though I'm working from home everyday I still make the effort to get out.

As I look out of the window now rain is traveling horizontally and any birds that abandon the precariously waving branches of a tree are blown sideways in a manner that suggests they're not entirely in control of their final destination. Yet in spite of the current inclement weather I take a daily walk along a stretch of the River Thames near my home.

It's a beautiful walk, ever changing with the seasons, thoroughly refreshing for mind and body but even though I go out every day I very rarely interact with people. In the centre of town earlier this week I gazed through the large open entrance of HMV and saw the people inside not as fellow music lovers, buying the latest album from this week's favorite popstrel or trying in vain to find a fifth qualifying disc they actually want to complete the 5 for £25 offer, but as a throng of possible infecters. A seething mass of people potentially carrying all sorts of viruses and infections. I was genuinely concerned and heart pounding chose not to go in. Instead I passed through town, across the market square and got back home. Wherein I ordered an old Willie Mitchell CD online.

When I do go out and meet people invariably they all want to stick needles in me. Most of the time they want to take something out, blood or bone marrow, but today there was a change in the procedure because they wanted to put something in.

My treatment has been delayed due to the possible Swine Flu Epidemic that may or may not come to full blown, apocalyptic fruition. Much like the Millennium Bug there is a lot of fuss but it may not come to much; many may posthumously miss the point in wondering what all the panic was about when nothing actually happened. Failing to realise that the reason it didn't happen was because of all the furore, media attention and hard work by those best placed to stop it.

For Swine Flu the fuss is in the form of a media campaign telling us how to blow our noses properly and how often to wash our hands. Two actions you'd expect civilized society to already be doing. A third assault on the impending epidemic is vaccination. Targeted currently at the elderly, pregnant women, and certain other “at risk” groups.

At the age of 35 I never expected to find myself in an at risk group for anything.

Although relatively untested on humans I have no reservations about having the jab. It is likely that with a very low count of proper white blood cells I won’t build up an immunity to the virus but certainly I see no harm in it; some possible protection is better than none at all. The real key to protecting me from the virus both before and after treatment is to vaccinate those around me. My parents are going to have it, my brother is trying to have it, and my wife has also had it. It is her having it that has been the real quandary in all of this because she is pregnant.

There is an immense national, and possibly international, fear surrounding the subject of vaccines and babies, be they toddling around or still waiting to come out. The foundation for most of this fear is the link to MMR vaccination and autism. A link that is now known to be a complete fabrication by a single, financially motivated, doctor but that was so widely publicised it still causes knee jerk reactions when the subject of child vaccination is raised and continues to fuel web based conspiracy theories ready to be lapped up by those that want to find them.

Putting the MMR “scandal” aside there is a genuine base for concern over giving the flu jab to pregnant women but the only basis for that concern is that it is new and relatively untested. It is uncertainty that is at the forefront here, not proof or rumour of possible damage.

It has been routine in America for some time but pregnant women have only been given the 'normal' flu jab in the UK since 2008. That was started however because studies showed actual benefits to the health of the mother during pregnancy and of the baby following birth. The delivery mechanism for the Swine Flu vaccine is the same for this established, non-controversial jab. The only fractional difference is what is inside; it is a different strain of the virus and therein lies the unknown. To my mind however, the risks are small.

It may be that in five years time it is revealed that all mothers given the vaccine are all starting to shrink to microscopic sizes, or that their children will all turn blue when they reach puberty. Who knows!

It is important in all aspects to have an eye on the future, to plan for what might be or guard against possible threats but in all things we need to focus more on The Now. Life is not perfect - if it were I would not have Leukaemia - life is full of risks and sometimes if you don’t take those risks then a greater gamble lies in the future you are protecting against never actually happening.

Today we have taken a small risk with the future health of our child, a step into the unknown, but we have done so to ensure that we all make it to that future. With one immune system reduced due to pregnancy and one that is about to be wiped out by chemotherapy, Swine Flu is far more likely to kill one or both of us than the vaccine having a detrimental effect to our unborn child. It is a move that was not taken lightly but one that gives a far greater chance to all three of us being their to enjoy her thirteenth birthday. Even if she does turn blue.

Saturday, 7 November 2009

One month.

Has it really only been one month since I was diagnosed?

To me it seems like I have been living with this for years, life without it seems to be less a memory and more a hope of what, one day, could be. The month has been an emotional roller coaster that I could not possibly have imagined and that I find difficult to fully describe.

Things are settling now though. A new routine has evolved to adapt to new circumstances. And although much is still the same, a lot has changed.

My daily drive to work has been replaced by just under an hour of meditative breathing. There is scientific research and anecdotal evidence suggesting a highly oxygenated body is far better placed to fight off cancer than one that is not. Whether this applies equally well to treatment as well as prevention I am still not sure but physiological effects aside the mental effects are just as important. Taking the time to meditate on my condition and summon a determined resolve to fight it is a supremely energising experience.

I used to make occasional efforts to meditate and to improve my breathing as an avid diver and snorkeller eager to extend the time spent at the bottom with the fish rather than on the surface splashing around, but I never did it seriously or consistantly. The renewed energy I find from meditating I owe simply to a very good friend. One who, having survived cancer herself, runs a yoga and pain managment retreat on the south coast and who, on visiting London last week, filled me with so much of her inate energy and drive, left me absolutely believing in my ability to beat this thing for the long term. For that visit I am deeply thankful.

A sandwich at my desk or a hastily grabbed hotdog from the 'snack wagon' that services our office has been replaced by a thoroughly healthy salad that is absolutely divine. Not unlike finding time to meditate this too was an occasional indulgence I'd treat myself to in my former life. My previous job would often find me lunching somewhere in the narrow, winding, and often still cobbled roads of London's West End. At the top of Carnaby Street there is a cafe come restaurant called Leon that serves the most amazing food. It's not cheap, but given that the food is organic and fresh the difference between one of their offerings and a prepacked, mass produced sandwich from the "Pret" over the road is a price worth paying.

I used to occasionally indulge myself in what they sold as a "Super Food Salad". It's no exaggeration to say that having one for lunch gets you zinging all afternoon; no coffee required. The recipe can be found in a book released under the Leon name a year or so ago and now I make one of these every single day. Only now its not costing me six quid a pop!

For anyone battling with any form of cancer I can highly recommend it. From what I have read so far on cancer and nutrition, and there is still a lot to wade through, the ingredients in this little beauty are all top hitters in the fight you have on your hands. I'd publish the recipe here but that simply wouldn't be legal. Go out and buy the book. The purchase price is worth that one page alone.

Lunch is also now followed by a good walk, in fresh air.

I have a new chair. Until this month working from home was an occasional flirtation with solitude born out of a periodic requirement to get my head around something without the distractions of an office. These sporadic dalliances were usually carried out with my laptop on the dining room table; or perched on a cheap Ikea stool in our study. An environment more suited to an hour of emailing or processing photographs than a full day of work.

Restlessness is inevitable and it soon became clear once my treatment was delayed that I was going to need something decent to sit on if I didn't want to lose entire days to getting up and making tea simply because I was fidgeting.

A colleague in our New York office - his apartment - was very keen, and quite correct, in stressing the need for a good office chair if you're going to be working from home and I am inclined to agree. I reasoned that if nothing else good came from my diagnosis it would be an opportunity to own a chair I have often coveted but never found the justification to own. It sounds a strange idea, and whilst I am not one to indulge in 21st Century Man's desire to own and consume every 'shiny toy' going, I do enjoy the delights of a damn good design.

If you work from home, cancer sufferer or not, get a good chair. And whilst you're on the hunt for the one that suits you sit, sit for a long time and savour, an Aeron made by Herman Miller. Your partner or bank manager may not thank you. But your back certainly will.

It has then been a month of massive shock and of subtle changes. I have learned a lot about the strength within myself and those around me. I have renewed cause to evaluate my views on life. It has been a month wherein I have experienced incredible sadness and absolute depression but where I have decided the only chance I have of beating this disease in the short and long term is to enjoy every second I have left. Relishing more than ever the simple pleasures of daily life, the family I have around me, and the true friends I have around the world.

I am positive that my treatment will be a success but even so this period of my life is very much the end of an old way and the beginning of something very new.