Fifty Shades of Grey Matter

Dear Friends,

I hope this find you well. Before you read further, please don’t have expectations of erotica and moistness in this blog…. I’ve been reading, peer-pressurised into reading the Fifty Shades of Grey, after hearing the hype and gossip and twitter twatter, chitter chatter. I have reviewed the reviews, and when I had read enough, I thought I should read the book for myself. It’s been acclaimed as a best seller, yet awful. Although uninspired by the prose and literary style, I was amused by the idea of borrowing the title, given that our nervous system is Grey Matter, and contains the nerve cell bodies making up the regions of the brain involved in movement and muscle control, sensory perception, such as sight, hearing, emotions, memory and speech. Grey matter does all of that for us, from keeping us continent to letting us smell the roses and hearing bird song. It’s know that the volume of the grey matter is correlated with our short term memory, and the white matter, is made up of the glial cells and axons, that allows signals to be transmitted from one region of the brain to another. I don’t recommend the “Fifty Shades…” read for literary reasons, though it was an education. I felt very naive. Nuff said.
Britain, it seems, is on fire. Despite the months of heavy rain, grey skies and wellie-wearing, it seems Britain is now on fire. The God of the Scots, Andy Murray, has now been fully adopted as British following his Wimbledon Men’s Singles Champion status, which is a good few lifetimes since the trophy was held the last British winner. Andy got a bit choked up by the emotion of winning, and choked me up too, with his big tears and soft expressive side, showing his joy, relief, excitement all in one go. What a fantastic start to the UK’s summer of sport. Then, a name I wasn’t familiar with, Bradley Wiggins, was being talked about night and day. Bradley powered up mountains and stayed on his bike as he hurtled down, and got the bonus of being the winner of the Tour de France. A Brit, wining the TdF, what a hero, now that doesn’t happen very often. So, within a matter of days, we have two national heroes, and the country has sat up a bit, on our sofas and on our bar stools, with a realisation, a frisson of excitement about the Olympics, London 2012, London’s Glory. After months and months of critical media converge, about budget overspends, legacies, G4S security muddles, airport security, London’s transport infrastructure, concerns of weather, terrorism, ticket sales and support…. Now the country seems to be enjoying the event, and medal counting. The countdown clock has been ticking for ages, it seems like there’s been weeks and weeks of criticism of everything Olympic, and now it’s lovely to see that the athletes are competing in stunning venues, completed on time, the traffic seems to be flowing, the Opening Ceremony was spectacular, with Liz and Daniel enjoying their special moment as they jumped out the helicopter. I was part of the opening too. There was at 8.12am, across Britain, a bell ringing event, to ring in the final twelve hour countdown to 20.12hrs and the big Opening Ceremony. Kick-off in Barkway began by the village pond, with an audience of ducks and dogs, and their walkers. We, the Barkway Belles gathered at 8am, we prepared ourselves, warmed up, stretched off our wrists and took part in the British Bell Rig, ringing in the Olympics. We rung with no music, we tried rounds and bell swapping and changing, left for right. I am not sure that there was a tune or even a pattern that was recognisable, but the important part was that we rung, we were part of the Olympics, in our own very little way. So with Andy M and his new trophy, Bradley with his medal, and us with our bells, we’re all living the dream… ready and proud of Team GB to show us how wisely our lottery funding and taxes have been spent. This is their moment, their time to make themselves proud. Here’s to the sun staying in view, the traffic flowing freely, and the security being sufficient, and to some good sportsmanship.

My Olympian cycling event, Team VG, has involved some drug taking, with no performance enhancement. My performance has been mostly sluggish and lacklustre, and has required gritty determination. This chemo works, as it  Bradley has beaten me. This is, however, nothing to do with violence or fifty shades type stuff. This is about Bradley Wiggins making it beyond his first cycling event, the TdF, and on to his second event, at the Olympics. Bradley is better at cycling than me, so it seems, and he’s better at recovery. I seem to have fallen off after the first cycle of this chemo. I’ve been sent off, sin-binned, given time off for reconditioning and told that there will be a couple of weeks with no drug taking. It seems Phil the neutrophil and Peter platelet have not been very sociable, and need to sort out their attitudes, and get friendly so that I can get on with my cycling event, so I can recycle. I have two weeks to try and grow some blood cells, and get me back within some kind of normal range. Me normal? It’s worth a try. My fifty shades of grey matter is about the feelings and emotions through which I have been cycling whilst on chemo. They are of disappointment of being on chemo again, relief of being on chemo again, and me being able to self administer at home, the nausea of 15 days of the cycle, the brave facing, the deep sleeping, the lying in, the slowing down, and side effect management. The frustrations of personal hygiene of the general public, the sneezing, snotting, coughing, phlegm spitting and flobbing all without the use of a hankie, tissue of sleeve. It seems we need to have a national pandemic warning for my fellow public transport users to feel that tissues, hankies or sleeves are a good idea. The actualities of having no immune system, was my collecting every bug and virus that was about. My wetness has been due to snotty noses and sinuses rather than anything else. My husky voice was only a symptom of a cold, it wasn’t designed for sex appeal. My blood loss has solely been due to nosebleeds, nothing more, and the soreness in my chest has only been from coughing so much, nothing to do with panting, gasping and breast foreplay. My deft fingering is the result of lots of ukulele practice, as part of my enforced sedentary lifestyle.

It seems watching the Olympic Triathlon was a good idea, and taking part would have been silly given my lack of blood cells. It seems that cycling events with procarbazine and lomustine are tough, tougher than my debut Chemo Tournament in 2011. It seems that not being a virgin with chemo, doesn’t make it less painful, and side effects of the drugs have whacked me good and proper. I have had nausea, nosebleeds, nasty infections and been knackered. I have not felt like an athlete, but despite that, a good flare-up of athlete’s foot proved that the chemo had wiped out what immune system I had, leaving me open to any and all bacterial, viral and fungal infections that wanted to come and stay with me. I am pleased to say that modern medicine and the marvels of the human body never cease to amaze me, and I am technically on the mend. There’s a bitter sweetness to my grey matter m’larky. The bitter is the disappointment of not getting on with chemo, on schedule, as expected, as planned. The sweet is the ability for me to enjoy a glass or two of wine, a medicinal Guinness or two, and some of the foods from my “prohibited” foodstuffs list for when I am on chemo. There’s a sweetness to the having time off to get stronger, but the bitterness seems to cut through at the moment, with my sensible self saying that two weeks off is the right thing, but then that niggly part that says quietly, “no chemo in your veins, means no chemo to soak the recurrent tumour…

So I am tying to keep on keeping on. I am trying to be normal, and make the most of things, spend time doing things that are important to me. Some folk have asked me “why are you still working?” which has helped me crystallise why work is so important for me, and made me appreciate fully having an employer that is taking good care of me and my special needs. Work provides me with a sense of purpose, after all developing new drug treatments to benefit patients sounds like a positive contribution to Society to me. Work provides a routine, a discipline, a timetable and structure that gives meaning and provides distraction. On top of that, having been at Roche since 1998, I feel a strong sense of community and get a great deal of support from my workplace friends and colleagues. People also ask me why I am still keen to do sporting events …. and yes, it might be considered a big challenge, but I have another coming up soon:
I am pleased to announce that Sue Wallace, my former rugby team mate from my University rugby days, and I will be doing the Dingle Half Marathon in … September. Sue is athletic, she was a nimble scrum-half and she continues to be a fit mountaineer and climber. Sue’s been training for our Half. Meanwhile, I would not currently describe myself as athletic, but what I don’t have in ability I will try and compensate for in attitude. We’ll be unlikely to get personal bests, to set world or Olympic records, but it has to be one of the most scenic routes ever, ever, ever, so we’ll definitely enjoy it. We’ll be “running” raising awareness of brain tumours and funds for Brain Tumour UK. If you would like to support us, please visit our online Virgin Money Giving page.
Epic news on the fundraising front, is that with our collective fundraising efforts since my diagnosis in November 2010, we have raise over £53K!! Bloody amazing eh, in times of austerity!! So from BigShaves, and BigWalks, BigTris, TriAgains, BigHalves, your full and half marathons, cake baking marathons, coffee mornings, garden parties and the MarathonRelayGB, we have made a massive difference for some amazing cancer support and research charities. I thank you sincerely, your kindness and generosity is a wonderful gift. It makes me feel very proud that so much good has come from my little brainstorm.

Sending lots Olympian medal-winning living, loving and laughing vibes to you.




2 thoughts on “Fifty Shades of Grey Matter

  1. Hi Vix, really pleased to hear how you’re getting on – well done for blogging! Not read 50 Shades of Grey but I’m sure you’re blog is a lot more informative! 🙂 Bradley Wiggins won the Tour De France due to the team around him and you can beat anything thrown at you by keeping strong with the love and support from family and friends far and wide. Big hugs from Skye. xx

  2. Phil and Peter just need to take some summer holidays, to rebuild their relationship, to chill out, go to the beach, have some drinks, find new friends, love….and then in September they will be 100% ready to carry on with chemo 🙂

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s