I hope this finds you and yours well and you have been enjoying a tantalising taste of summer, for those of you in the northern hemisphere. I hope you have gotten your trousers off, and found your shorts, to ensure that you make the most of the opportunity to make your own vitamin D. We are still technically in “drought” status in the south east of England, with hosepipes banned. The good news is that we have had some blue skies and sunshine with our drought, rather than drought and drizzle which personally, I found a rather odd combo.
Alas, just in time for the extra long weekend for the lovely Jubbly Jubilee celebrations, the sun found a good hiding place. I am not a royalist, but I do like and extra long weekend. I am not sure that the argument of the monarchy keeping our tourist economy afloat is not enough to justify the cost of her thousand boat flotilla on the Thames, her river pageant and her glitzy Royal Barge. I wonder, perhaps she felt it was worth a big celebration having done her sixty years in the same job. Blimey, I am not sure there are many others who have done a long stint like that, with no promotions, no appraisals, no personal development plans and career interest dialogues. I wonder if she has enjoyed the Queenie life, sitting on her throne, the shiny one, and the one in the bathroom. I wonder if she enjoys wearing her crowns and tiaras, and if she does like to walk the corgies, and pick up their poo? I wonder who else could feature on our stamps and money if it were not our Lizzie. Would we end up with those pseudo-celebrities being on our stamps, notes and coins? Perhaps from Britain’s Got Talent, that dog who can walk, and roll, and do two legged antics like no other. Or perhaps if would be our historical heros and heroines: the feisty Emilline Pankhurst, who got me, and a great deal of other women, the vote; or perhaps Isambard Kingdom Brunel, as he did such a great job with our railways that I use so regularly; or maybe Charlie Darwin, for his theory of evolution…. I wonder if my mutant brain cells could be explained by him; or perhaps Alexander Fleming and his antibiotics and Aneurin Bevan, the Welshman for whom we can be grateful for the creation of our National Health Service (we need a few Celts on the short list); perhaps Stephen Fry, he should make the final few surely. Your suggestions would be welcome, please add your ideas as a comment…
I digress, apologies. Lizzie did look splendid this weekend, despite the greyness of the skies, and the leaky clouds and down pours. I hope the rain didn’t ruin her special hat. As Lizzie and Phil floated on their boat, and waved, we are had our village community celebration with noticeable precipitation and moisture. I wore my wellies to and helped with the sports day, and watched the dog show, fancy-dress parade, sampled the offerings from the beer tent and listened to and performed in music making…. the Barkway Belles, us talented ladies with our hand-bells, playing some un-Christmassy tunes for those enjoying afternoon tea in the village hall. It was most civilised, and mostly tuneful. There were a few Les Dawson moments, but we made it through. We’ll keep practicing.
Life’s been a bit uppy-downy since my last update, as I prepared myself for my next scan in Glasgow which I had at the end of May, and now, as I prepare myself for my next clinic visit, and scan results, in mid June. It seems that my life has been chunked into three month blocks of time, during which I cycle emotionally through a positive state of mind and reminding myself of how well I am doing, which is akin to free-wheeling downhill. Then sometimes, I find myself on an uphill slog, with endless false horizons, and a gradient that is prohibitive of a comfortable cadence. I find myself what-if-ing, as I approach the scan results day. I find myself hopeful of a clinical “bugger off for another three months” message from the oncology team, hopeful that I am let off again for “good behaviour”, and that I am told to get on with living, loving and laughing. I remind myself, that about ten percent of patients who are diagnosed with what I have, only about ten percent of us, live two years beyond diagnosis. I remind myself that I am going to be a far-outlier, I will out-live the generation before me. I remind myself that I am a tough old boot.
I find it quite hard to plan beyond my next scan, the end of the next three month unit of time. There seems to be an invisible reinforced gateway, which is difficult for me to get through. I can’t get over it, I can’t go under it, or round it…. I have to wait, patiently, to go through it. I have to be a patient with patience, enjoying the passing of time, enjoying the views, smelling the roses, until the gate is ready to open.
In my uppy-downiness of getting on with life, there have been some fantastic bits… I’ve been to Country Cork, with Amanda, for our annual retreat. We enjoyed mutual counselling and had a chilled time indulging in some of south west Ireland’s finest scenery, culture and cuisine. The Guinness was good too. I’ve been to Lake Maggiorio in Italy with work, where I was invited to share my patient perspective with colleagues in the Early Development part of our organisation. It’s been great for me to have audiences within the Pharmaceutical industry, an industry that doesn’t often get good press. It’s great to have audiences of clever scientists and drug developers who are trying to develop new and better treatments for patients, and to improve patient outcomes. It’s great to be able to share my perspective, and remind my colleagues that being a patient, is only part of being a person, and that we need to ensure that we really understand the patient journey as well as the disease, the science and biology, the drug, it’s mode of action, the pharmacology…. I hopefully can make a difference within the organisation, reminding colleagues of why we do what we do, why we come to work, and acknowledging their dedication and contribution to improving the lives of patients, patients like me.
I was invited to say some words at the end of the Marathon RelayGB, in London. The Relay GB started in early May, and has set a new world record with back to back marathons being run, with almost 500 runners covering a total of 2680 miles around the UK. It was a phenomenal event, with somewhat complex logistics. Two friends had kindly agreed to take part in the relay too, and being proper athletes, they travelled at speeds I can only manage when cycling. Massive thanks to Helen and Ben for their involvement and support, you are both utterly amazing. Here are their “diary entries” so you can get a feel for yourself of the kind of people they are:
Helen MacVicker, my former University rugby teammate: “My leg was good fun in a weird sort of way. Not quite what I expected regarding the level of support, but I am used to running solo, and navigating on the move, so I was quite happy trundling along with an OS map in one hand, and no officials to be seen for the first 90 minutes. My leg started in Pity Me, but that I did not, given that I had the day off work especially to run. Pity Me is just north of Durham, from there I headed south east to cross Tony Blair constituency land of Sedgefield, before coming to a final halt 29.2 miles later at the Riverside Stadium, Middlesbrough. I added 500m to the scheduled marathon distance by going wrong a couple of times in the urban bits, but the rest of the extra mileage was simply down to approximated planning of the relay legs and an enforced detour to avoid a busy main road with no pavement. No big deal for me, because I have run a few ultra marathons and the distance was not concerning me. Rather more, it was my speed that I was worried about, what with having committed to running a sub-4 hour marathon. I had a spate of colds and cough bugs in the six weeks prior to the event and was not convinced I could go more quickly than a plod. In the end, all was good, I passed through the marathon in 3hr 35 minutes, and finished the leg in a few minutes over 4 hours, greeted by a nice hot cuppa with plenty of sugar – marvellous! John Stanford and his crew were a really friendly bunch and did a superb job to keep everything on track around the country. I am glad I seized the opportunity that Vicky presented to me those few weeks ago. So, here I am 4 days later and still had slightly sore legs when I ran today…but hey, it’s all good training for my next adventure – my 1st 100K race, which is in Cumbria in about a month. Thanks for alerting me to this relay Vix, it was an absolute pleasure to take part. Helen xx”
Ben Walsh, my work colleague: “It is without doubt a good cause, and getting in touch with the organizer I wanted to try and help out by taking a leg that might not get other people volunteering to participate. A night time leg, in a windy area of the country sounded fine. As it was one other person had their name down, but he didn’t show up on the night. During the week I run mostly at lunchtimes, and at the weekend first thing in the morning. This allows us to plan our time and work around my dedication/obsession to running. So, to plan to run a marathon at 12:30am between a Saturday and Sunday was always going to be interesting! Not least as I am in the midst of a “runstreak” which has seen me run every day since Christmas Eve 2011 so I had to continue this and make sure I ran on the Saturday as well (sad, I know). Our rendezvous with the RelayGB guys was an out-of-town hotel with a vast car-park. I hate to be late for anything, so turned up an hour before I was due and waited for the guys to come for the pre-start briefing. I waited, and waited. And waited. Being a continual relay, there was always going to be the chance for delays, and the guys turned up in time before I got too nervous about being in the wrong place. Running I am fine with, but this was to be my first proper night time run. I’ve run to and from work in the pitch dark before when working early or late, but never set out quite this late in the day. As it turned out was not an issue for me at all, with stats via my Garmin of 27 miles run at average pace of 7:41/mile therefore taking 3 hours 27 mins 42 seconds (RelayGB page stats different as based on the Blackberry they used). So a fairly good run time for me: 30 mins slower than my race PB, but happy nonetheless. Running focus was not a problem at all, having taken up time the Saturday afternoon by watching the latest American Pie film and then the Champions League footy game and watching a live pub band, my mind kept wandering back to these events. Regardless, I was on so many energy supplements I never once felt tired either physically or mentally, and kept thinking of why the event and charity are important during the hills I had to conquer: Norfolk is not flat by foot, apart from the extreme coast line! That is really that – ran like a machine, kept my focus on why I was doing this, and enjoyed every last second of it. Only wish I’d been able to get down to London to do the closing leg as well! The support crew and other runners are the stars; putting themselves on the line to achieve this and going the extra mile (or two). What was a slight inconvenience for me in running at night compared to what other people have been through/went through in the end, eh? Hugs Ben”
I was participating in the final leg of the final stage and hoping to do a full marathon. I had set my target as the 26.2 miles from Daggenham in the east of London, to the finish line in west London. I thought that I would have another marathon in me. Alas, I think I peaked, from a running perspective, about three years ago, and the tapering of my training regime for the RelayGB was somewhat redundant. I’d got about 90 miles under my belt in training, but that was a fraction of what I had intended. My neighbour Alison and I, had managed a fourteen miler as our longest run in our training, but we didn’t make it beyond that, partly because of scheduling, and weather, and lots of other excuses. I kept on saying to myself “it’s only pain, it’s not going to kill me”. I convinced myself that attitude alone, could get me through. Then that amazingly fit lady from Leicestershire, Claire Whatsername, keeled over and died at the 25 mile marker on the London Marathon, a few weeks before my leg of the RelayGB. She was healthy, very fit, she’d trained properly, she was prepared, and she didn’t make it over the finishing line to collect her medal. Her tragic death resulted in colossal charitable contributions and global media coverage and awareness of why she was running, but she was gone. That was not my intention, raising funds and awareness for brain tumours yes, but not at all costs. I thought to myself. I looked at myself in the mirror: I am not that fit, with several additional pounds since my last marathon in 2009, I hadn’t done all the training I should have done. I looked at myself and asked “who do you think you are, Wonder Woman or something?” Linda Carter, I am not. I was kidding myself I was invincible, indestructible, forgetting that my body isn’t quite in the condition it was a couple of years ago when I was a frequent gym user and rural road runner. I decided, after much rumination and procrastinating, to be sensible. I gave myself a hard time about “not doing what I had committed to do”, letting myself, and others, down. I decided that I would not participate in the Matlock Half on Saturday 19th June, and just do a half instead of a whole as part of RelayGB on 21st May. I thought that way, I would stand a better chance of enjoying it, and crossing the finishing line on my feet, unaided.
I kept on procrastinating and ruminating, and eventually decided to be very sensible and do the last half marathon of the RelayGB. Alison and I ran from Barbican in central London, for fourteen miles of so, west. It was a bit like full contact marathon running, where my rugby training came into use, with swerves and sidesteps and hand-offs to avoid tourists and those innocent pavement users we encountered. We took 3 hours for our run, stopping for red lights, map reading and navigational adjustments, and the odd photo opportunity as we passed St Paul’s Cathedral, Somerset House, Big Ben and the Houses of Parliament, the Royal Albert Hall, preparations for the Chelsea flower show, and enjoying laps of Hyde, Battersea and Wandsworth Parks. Even Lizzie had sorted out the Changing of the Guards for us as we ran past Buckingham House, with her brass band marching and playing for us. I was fortunate to be the baton carrier for the final part of the final leg as we were joined by a big group of runners for the finale, and meeting and chatting to John, the RelayGB organiser. It was epic, an incredible idea, a massive amount of work to turn it from a concept to a reality and I feel very proud to have been part of it. There’s been some media coverage, although I think the Olympic Torch has somewhat stolen our thunder, and a new world record went without the fanfare it deserved.
Here’s some of the online coverage we had: http://www.newmarketjournal.co.uk/news/regional-news/runners-smash-relay-marathon-record-1-3869129
If you’d like to support Brain Tumour UK, please feel free to sponsor Helen, Ben, Alison and I online:
As Queenie enjoys for her big celebration, and Price Phil gets over his bladder infection which seems to have attracted a disproportionate amount of media coverage, I’ve just had a discreet celebration following my one year anniversary since I moved back home to Hertfordshire. It’s been a year since I began the redefining of my independence and new normality down south. I’ve been north too… a trip to the Isle of Skye to see Mum and Dad and to be part of the hosting team for their Open Garden, charity weekend. It involved amazing sunshine, cake, coffee, tea, more cake, garden and croft tours, more cake, raffles and chatting. A massive thanks to the ladies and gents who baked cakes, served drinks, organised the raffle and helped host the weekend and helped us raise a phenomenal £1,500 for Highlands Hospice, The Beatson Pebble Appeal, Maggie’s Cancer Caring centres and Macmillan. Thank you and well done Mum and Dad, what a team you are with all the preparatory organising, mowing, pruning, and the hosting and guided tours on the day, while I drank tea and did quality control on cakes, and chatted to the steady flow of visitors. The garden and croft looked stunning in tropical sunshine, complete with two new arrivals, fluffy baby goslings. I now have a Skye sun tan, not something every visitor to Skye gets. I had the most successful fish catching day ever: we caught 53 brown trout, in less than a hour, albeit from their fish farm. Mum and I spent a lovely afternoon riverside being fishwives, gutting and beheading. I think I have a newly honed skill for my CV. I felt like a 17 year old on their birthday, as after over eighteen months of not being behind the wheel, and I drove, under close supervision I promise, up and down Mum and Dad’s driveway. It sounds childish in some ways, but it was good to know that my feet still knew which pedal does what, and to look forward to being able to be off private roads in 21 months time, subject to all being well inside my head.
Dad was my driver south, and we came via friends in Fintry, just north of Glasgow, trying out the Fintry Inn, which is highly recommended for excellent pub grub. After my 40 minutes of stillness in the MRI scanner in Glasgow, we went south via Hadfield and a few days with my brother’s family, being part of the school run, dog walking and catching up, before coming home to Herts for handbell practice and draping bunting around the house.
So what’s next I hear you ask? Not being one to spend too much time lazing on my arse, it’s time for VixTryAgain, the Blenheim Triathlon on 9th-10th June. Team Vix, is a heterogeneous bunch of triathletes and wannabe-triathletes, with a diverse connections including former rugby teammates, Roche work colleagues and family (including my Mum) and friends, will be undertaking sprint triathlons, either as individual entrants, like myself, or as part of a team, where each member does one of the legs. So, this will be a great excuse for a big pic-nic. This takes place a Blenheim Palace in Oxfordshire. I have dusted off my wetsuit and found my goggles, so my swimming preparation is done. I can still get on my bike and I know I will be able to manage the run, so I am hoping that is me sorted. Some of the participants have been taking training very seriously, and I have heard mutterings of considerable weight-loss. Following the basic principles of Physics, in that energy can neither be created nor destroyed, I seem to be gaining what others are loosing, so I am hoping that there will be some rebalancing after the triathlon. Mum’s been taking her training seriously, swimming off the bottom of their croft, out into Loch Snizort, a sea Loch, which is technically the Atlantic Ocean. If you would like to support those of us taking part, raising funds for Cancer Research UK and AGE UK, please visit Team Vix Try Again online giving page:
My sister-in-law Ingrid, and her sisters Jo and Fran, are doing a team Triathlon in June and would really appreciate your support. They are fundraising for Penny Brohn Cancer Care. To find out more about what we’re doing and why, please visit http://www.virginmoneygiving.com/team/chamberssisters
My colleague Jacqui Spencer, has been taking her training seriously, swapping wine for her wheels, sausages for swimming and Revels for running. She is looking like a contender for the Olympic squad. If you’d like to support Jacqui, and celebrate her wet-suited debut, here’s her online giving page: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=JacquiSpencer&faId=201411&isTeam=false
Massive respect and thanks to my colleague Sarah Rogerson has just completed the Edinburgh Marathon on 27th May, a reportedly flat marathon, but Sarah reports otherwise! Despite her dodgy hip, dodgy knee and dubious cough, Sarah made it, and enjoyed it. Sarah’s fundraising for Age UK Herts (the Roche UK charity of the year) http://www.justgiving.com/Sarah-Rogerson and Brain Tumour UK http://www.justgiving.com/Sarah-Rogerson0.
Thanks in advance for your support, no pressure to donate but any donations would be much appreciated!
For your online viewing pleasure, enjoy these timeless classics: http://www.youtube.com/watch?v=7ZqZgmpq1nw&feature=youtube_gdata_player
For those that need an excuse to go to the cinema, here’s a must see film: “The Angels’ Share” Ken Loach’s latest, with gritty Glasgow reality and a whiff of whisky. I likened it to a cross between The Full Monty, Train Spotting and Vera Drake and gave it five stars.
Do let me know your news, and send me some pulses of energy and positivity for my big events and scan results in mid June.
Keep on Living, Loving and Laughing, with big kisses and bone-crunching hugs