I sit here thinking about the holidays I’ve just enjoyed with family and friends as the news reports of the supposedly stress-free cruise holiday those passengers who are now swimming around the med, after the cruise ship mishap off the Italian coast. I am hoping that they are strong swimmers and are surrounded by strong rescuers, and the waters, unlike those of the Australian coast in Perth, are shark-free, so that the death toll doesn’t increase any further. It just goes to show that none of us knows what lies ahead. There are no guarantees in life. Quite literally, what doesn’t kill you, will make you stronger, well, in the case of the cruisers, it will make them stronger swimmers for sure, and be an unintended kick-start if they too had resolutions of getting fitter in 2012.
I’ve been contemplating terminology, that has come to be in common usage, yet it has meanings that are quite possibly meaningless: Best Before and Expiry Dates and Lifetime Guarantees.
I have just passed my biggest milestone yet, the median survival for someone diagnosed with grade 4 glioblastoma. A very significant milestone as my technical date of diagnosis was 3rd November 2010, when post-surgically the clever histopathologists had done their microscopic analysis and evaluations and assessments of the tuna golf ball that had been sucked and scooped out of my head. So, count on 13.6 months from 3rd November 2010, and you will understand that Christmas 2011 was a very significant day for me. As I’d worked out this date for myself not long after being told my diagnosis and prognosis, I was not surprised that I wasn’t inundated with a plethora of invites for Christmas. After all, who’d want to have a guest who’s approaching their Expiry Date, past their Best Before date, with no Lifetime Guarantee? I have been wondering, am I past my Best Before Date? Am I taking up too much time, or perhaps even wasting oxygen? I think not. Fortunately, very fortunately, I have decided that I am going to be a far out-lier. I have passed the median survival milestone without a hitch. There’s been some lift-bludging, and lots of taxis and public transport, but not a single hitch.
So, not only an epic milestone Christmas for me, but also a different celebration with family Galbraith descending on our kind friends in Somerset for a double-family Christmas with the Capells. Lots of fun was had with me being a foot soldier in the military operation that was the vegetable preparation for a double family Christmas catering. I mostly did what I was told, peeling and chopping to the required standard. I made my first roulade, which the magazine said was a “cooking essential” so I really don’t know how I’d managed to get to being 39 years old without having made one before.
I totally recommend the recipe, although I am not sure it fits entirely with my resolution. We had a fantastic time with a Carol Concert on Christmas Eve in the church, a visit from Father Christmas, a muddy walk, too much to eat, silly games, Dad’s dodgy magic show, and the Queen’s speech. Old Lizzie made me think of her speech a few years back, when she talked about her horrible anus, or was it her “annus horriblus”? It made me think about my annus: 2011, although not quite what I’d have ever expected my 38th year to be, was actually a wonderful year as I completed all six weeks of chemoradiation, then all six months of chemotherapy, without the side-effects being too bad; we raised over £40K for charity, I did my first ever triathlon and got a personal best for the Dingle Half Marathon five days after completing my sixth cycle of chemotherapy, I had a nude photo shoot and became a Calendar Girl, I went to New Zealand and Australia seeing family, friends, the Rugby World Cup, being shark bait, and learnt how to taste wine.
On Boxing Day we were joined by some of my Australian family, with Chris, Paul, James and Claire joining us from Perth, and Martin and Yas from closer to home. We managed to put on a matinee and evening performance of a home-grown concert, featuring the Family Ukulele Club, the Family Ensemble Christmas Carols on Recorder, superb solos, a debut performance of “if I were not upon this stage” by the Capells, lots of silliness and quality vocal performances, superb musicality and stage presence. Indeed we’d have put up good competition for the Family Von Trapp.
So what does median survival mean then? Well, for those of you paying attention during your maths lessons, you’ll remember doing averages, and you’ll remember that there are three types of average: means, modes and medians. The mean being the sum of all the numbers divided by the number of numbers in the sum, the mode being the most frequently observed number in the sequence and the median being the number in the middle when all the numbers are in numeric order. Clear as mud? I won’t change careers and become a maths teacher, I promise. To me, median survival has meant that there has been an unforgettable cloud looming, with depressing possibility. What passing the milestone has meant, is that the skies feel much, much brighter and the sunshine feels warm on my back, the views ahead are stunning, the days are getting longer and filled with possibility, opportunity and realistic optimism. I have met a couple of blokes who are more than fifteen years beyond the same diagnosis as me, and doing well. They gave me hope when I heard their stories, and they give me hope still. I’m doing well, still getting use to having less energy that I did have and occasionally feeling “wobbly”. Christmas excesses resulted in some physical wobbliness, but the emotional ones I think are reasonable given the latest milestone. I am working more now, doing three days a week which feels a good balance. I am getting used to my new normality, and becoming an expert in Change Management.
Back to Expiry Dates and Best Before Dates: before you throw away some food because it’s 24 hours beyond its Best Before or Expiry Date, think of me, and have a think about what that date really means. Think of the extreme volumes of food and stuff we waste each year. Think of the landfill. I don’t want you to get food poisoning, but it’s worth remembering, in these times of belt-tightening and financial hardship, that Expiry Date, or Best Before Date, doesn’t always mean what it says. Lifetime Guarantees too are a misnomer. What is a “lifetime”? For some it may be a few hours, days, weeks or months, and for some it may be decades, or even a century or more. When washing-up a saucepan the other day, scrubbing the base of the pan, I thought to myself when I saw the lifetime guarantee stamped on it. Did they know the pan was for me when they made it? Does someone, somewhere, in a stainless steel pan-making factory know when my time is up, when enough is enough? Probably not, me thinks. It’s based on probability and risk, like median survivals being based on statistics and demographics of the population, and the relative indestructibility or invincibility of the object, and me.
Risk is something that was recently in my mind when I tried to get insurance for a quick trip to South Carolina in the USA, to spend time with my friends Lindy, Lisa and Nicole, and token bloke, Andy. I found, that even those travel insurance companies that profess to be “cancer-friendly” wouldn’t insure me. There was no sum I could pay, that was going to get me insurance for my “previous and existing medical condition”. A bit ridiculous I thought, when a fat old bloke can fly solo all around the world on reindeer sleigh, you’d think they’d insure me just to fly to the US. So, what does a girl do when she’s told that, due to the median survival of the disease that she was diagnosed with, a date which she has passed, means that she’s uninsurable. Well, as I’ve said, I’ve decided that I am going to be a far-outlier, and I’m not going to stop living, stop doing things that I want to do, within reason obviously, when I feel well, because insurance companies don’t understand what “median” really means.
I had a wonderful New Year with friends and family of friends. We had a second Christmas, a Baby Shower for Lindy’s Bunny who is now seven months baked (you may recall, a baby for which I was originally held responsible, despite my lack of eggs, sperm or involvement), and lots of time chilling and chatting beach-side. When we get together it’s a bit like “Sex in the City”, except there was no Sex, and we weren’t in the City, but the being comfortable in each other’s company, the sharing, listening, laughs at ourselves and each other is a health tonic. We shared an appreciation of what we had and what we have, our families, good friends, a new babe and our health. My revolutionary resolutions are similar to those that I have had for many years: to get fitter not fatter. Thanks to Nicole, the regime I will be following is a simple ten word plan: eat real food, not a lot, mostly plants, exercise more. In addition, I resolve to make sure I continue to make time to do fun things, with fun people and enjoy living. I have kick-started with some exercise to try and get me in some sort of shape to enable me to undertake my next wave of awareness and fundraising endeavours, which hopefully include the Relay GB 2012, VixTryAgain at Blenheim Triathlon in June, Dingle Half Marathon in September and more with my “getting around by Halves”, and may be the occasional whole.
I am open to more suggestions to get fit for the London Olympics, and your invites to join you on nice events, where it’s the taking part, not the winning, that counts. Alternatively, if you are doing something and want to support and fundraise for my chosen charities, that’d be fantastic. Just let me know, and I will happily help you publicising your event and fundraising link. On that note, I am very pleased to tell you that my friend and colleague Alison Hendry, who joined me on some of VixBigWalk last year, is undertaking the Haute Route in the French Alps, which I’ll tell you more about next time.
Here’s a bit of philosophy for you: Life’s not about the number of breaths we take, but the number of moments that take our breath away.
Here’s a bit of on-line fun: Clever musical stuff with my favourite tunes….
Here’s hoping that 2012 sees more wonderful stuff, adventures, good health and happiness for us all.
Happy New Beer and Nappy New Year to you and yours, Cheers!
Living, Loving and Laughing, with big kisses and bone-crunching hugs
P.S. Congratulations to Rachel for her new butt which I have been partially blamed for. As part of some house extending building work, she and her husband decided to have a rainwater collection tank installed for flushing the loos with. I am glad my trip to New Zealand, and rant about our Nation’s wastefulness of drinking quality water wasn’t for nothing!
P.P.S. For those of you celebrating Burn’s Night, I have rewritten “Ode to a Haggis” which is posted in my musings.