Thursday, 25 February 2016

Happy (re)Birthday!

My immune system is one year old! 

Tomorrow is my hen party with all my favourite people. If I could have had a glimpse of what my life would be like one year on, I wouldn’t fear a single thing. I can’t quite believe it. It is such a milestone. One year down. Four years to go until I can say I am cured. What a year it has been.

Today marks one whole year since we sat around for hours, nervously waiting for the moment when the nurse would come along with a little bag of reddish yellow cells that had been extracted from my sister’s arm a few hours earlier. Transplant day. Day one. My (re)birthday. 

The moment itself was anticlimactic. The process was no different to the many bags of red blood cells, platelets, chemotherapies, fluids, antibiotics, antifungals, and everything else that had dripped steadily into my veins over the previous 6 months with the ultimate aim of “making me better”. But this felt different. The potential energy was palpable. 

At that time, I think the fear had largely dissipated. I was most fearful throughout January and would cry myself to sleep most nights, but by late February I felt much calmer. The night before the transplant I wrote a letter to Matt and sealed it in an envelope. I don’t think he knows to this day that I ever wrote that letter. It said that I loved him and that I was lucky to have met him and that if things didn’t work out how we were all hoping that I was thankful that I had loved someone so fully, and been so loved in return. I placed the letter at the back of my journal (where, as far as I am aware, it still remains) in which I had been writing poems, quotes and song lyrics during the conditioning chemotherapy during the weeks before. I remember that song “take me to church” by hozier was everywhere and I wrote the lyrics out over and over as an attempt at mindfulness, a technique the psychologist had taught me at Coventry which rarely worked. 

Mindfulness, as I understand it, is the awareness and acknowledgement of the present moment and of one's surroundings. I have forgotten if I have already written about this, but I had a few sessions with a psychologist who said that she often recommends the process to cancer patients as they have a lot to think about and that practising mindfulness can be a calming influence. She suggested the example of washing up: instead of worrying about the future or the “what ifs”, I should instead focus on the way the water feels on my hands, the temperature, the smells, the sounds etc. 

To be honest, I thought the whole idea was a bit stupid. It’s like trying not to laugh in church: the more you try not to do something (in this case, “think”) the more you can’t help doing it. You can’t tell someone that they might die and then tell them not to think about it. And anyway, I said, I’ve got a dishwasher. 

I don’t think I could ever not think. The majority of my life happens inside my own head. I remember having a conversation with my friend Emily about the concept of reality: most people consider the things we do and see and feel and smell and touch to be the benchmark of “reality” when in fact, much of what we actually experience happens largely inside our own heads. Who is to say that that is not reality? 

This actually invokes one of my favourite lines from literature:
“Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”

We filter these subjective experiences in our minds and transform them into objective reality, but it is the processes that allow us to reach logical conclusions about reality that fascinate me. Death is certainly real, but so is fear, so is terror, so is love, so is desire. To me, telling a cancer patient to not think is one of the worst things you could tell them, because to them there is a lot of living to do.

If I could write a letter to my former self just after I was diagnosed, the one who has just been told the news, the one sitting in that hospital room, hearing nothing that was being said, hearing only the ringing in my ears, the resonating sound of the aftermath of an atomic bomb, I would say this: 

There is nothing anyone can say, myself included, to prepare you for what is about to happen. There are no comforting words for the pain you will feel, the emotions that will rage through your body, the overwhelming desire to LIVE that will possess you like you never could have imagined. But if you find yourself lying in bed in the early hours, silently crying, terrified, needing reassurance (and you will), here is what I would say...

Love yourself. Believe in the extraordinary things your body is capable of. Doubt is normal... but don’t let it overwhelm you. Take it in, take everything in, but don’t let anything become you. Just go with it, you are the flotsam riding through white water rapids and over waterfalls who will wash ashore, apparently unaltered but entirely changed. Good things will come from this experience. Every sunrise is the bud of a bud, beautiful and significant. Make more of an effort to see it, really see it. Everything is profound, but it won’t last forever. 

Tuesday, 16 February 2016

A disclaimer.

I wanted to make a quick disclaimer about the content on this site. 

Everything written on this blog is either my own opinion, 

or, conclusions and recommendations based on the best available scientific research (to the best of my knowledge) or the trusted expert opinion of health care professionals.

I feel it is necessary to write this because recently I have come across a number of instances in which people who have a widespread influence, particularly through social media, who have no discernible scientific backgrounds, espouse the pseudo-scientific benefits of eating this or not eating that, without citing any scientific research or resources.

I approach most things with a healthy amount of scepticism and I believe strongly that you should always question everything that is likely to influence you, whether positively or negatively. I wrongly assumed that everyone would weigh up everything they are told with the same rational thinking and reasonable doubt, and yet comments on instagram posts, facebook statuses and youtube videos tell a wildly different story. Many people blindly believe what they are told by someone who posses no specialist knowledge on the subject, and are insanely defensive of their favourite instagrammer or youtuber if anyone questions it. Indeed, two of my most hated sayings are “apparently…” and worse, “they say…”. They are covers for lazy ignorance… who are they? why should we trust what “they say”? 

I believe it is the responsibility of anyone with a certain amount of putative authority or influence to be honest and informed, and to provide evidence of any recommendations which may influence the health and wellbeing of their audience. 

Therefore from now on, as the reach of this little blog grows, I will endeavour to provide more links to scientific, evidence based research and expert resources. In the meantime, check out the link bar at the top for information from charity and reputable organisations (with the exception of Wikipedia, but I find it useful if you look at the references for original sources), and perhaps more importantly, question everything you read, do your own research, and don’t believe what “they say”.

Tuesday, 9 February 2016

I was a rock.

Swallow Falls, Betws-y-Coed, 2013

I was a rock 

I was a rock
had edges like teeth
my mouth swallowed whole
gallons of rain

the cold cracked me open
I absconded with the salmon
from their freshwater birth rivers
which softly smoothed and soothed me

now I am a pebble
washed up on an unfamiliar shore
buried for years
anticipating the unremarkable day

I am flung back into the sea
I am with the skeletons
I am crushed beneath the weight of an earth 

once again

to be a rock, once again