Update – 7th April 2013

This is just a quick update on behalf of Vixter to let you all know that she’s being very well looked after here on Skye. The medical care we’re all getting is second to none, from GPs, Community Nurses, Macmillan Nurse, Home Carers and friends near and far … thank you to everybody who’s sending positive vibes and hugs … they’re much appreciated and are
working well.

Just to reassure you all that Vix is comfortable and still has a cheeky sense of humour and is an exceptionally compliant and delightful patient for those who are looking after her.

If you’d like to send Vix messages please do so via her blog.

Merry Christmas ho, ho, ho!

Dear Friends

I hope this finds you warm and well, with Christmas plans executed and a cosy homely time of merriment and festivities. I am warm and relatively well, and about four weeks behind for my festive planning. Despite the best intentions, homemade mincemeat has been as much as I have managed this year. My planning and preparation has been disrupted by my unexpected birthday.

One could say that a birthday is 365 days from the last one, so it should never be unexpected. But this one, the big FOUR OOOHHH was a birthday I never thought I’d be having (if you remember the stats). Alas, I am still here, still breathing (wasting oxygen perhaps?) and doing most things unaided. I have had a wonderful celebration fortnight, with Ragdale spa-ing (is that a verb?) with Mum and friends, concerts and performances Jo Brand and Alan Davis, and a couple of handbell gigs, dining out and in and generally building up my reserves. I was asked for photographic identification this week, when buying some wine. The poor chap on the checkout should have gone to SpecSavers, but I will take all the compliments I get!!

Phil the neutrophil and Peter platelet caused some alarm at their absence  last week, but they have rallied the troops and stood up to be counted on Monday in Glasgow, so the Prof warmly congratulated me today, and by way of celebration he prescribed me cycle 4 of chemo. So not quite like the classic song, but you can see I am living the dream “… All I want for Christmas is chemotherapy”.

I sit here on Christmas afternoon, gently being pickled and realisation that most of my Christmas cards are unwritten and may well be “hope you had a good Christmas and Happy New Year” cards.
We have enjoyed champagne, pain au chocolates, a walk with blue skies and a rainbow… And now my glass is on auto refill, and I am seated I have wonderfully kind and generous hosts here in Somerset and I am soaking up the TLC.

To warm up my vocal chords ahead of the inevitable carols, I went on a singing workshop “Sing in Herts” and learnt a capella style spine tingling and world music songs. We even did a few recordings so check these out if you fancy: Have a look at “Sing in Herts” on the web and if you fancy some singing, let me know. It has medicinal qualities apparently.

I have been somewhat aghast by the revelations and controversy that has arisen from Sir Jimmy Saville in the recent weeks. That combined with the seasonality, I ‘ve been thinking what confusing messages are given to guide the young: write to this strange old man and tell him what you want to do and hope that he fixes it for you… Trust in him… ; write to this strange old man and tell him what you want, and invite him

into your bedroom on the night of 24th December, invite him to empty his sacks in your room; the virgin Mary, dressed in blue gave birth, and the Holy Spirit came across her.

Wishing you good health and happiness for 2013, and enjoy the leftover turkey!

Big love and bonecrunching festive cuddles beneath imaginary mistletoe.

Living, Loving and Laughing
Vix xxx

Two Years On

Dear Friends,

I hope this finds you well, with dry feet and power, unlike friends in the north east America. It seems that Sandy made her way east, as there was wind in Barkway a couple of weeks ago, and I don’t think it had anything to do with my extraordinary levels of broccoli consumption. I trust the Autumn Test series is keeping you entertained; I’ve been delighted, in fact amazed by the Scottish boys, who have remembered that the on a rugby pitch, the goal is to score tries. Tries scored against the World Champions New Zealand, what more can a girl dream of. Well done boys, build on that performance and I might put a fiver on us not getting the wooden spoon in the Six Nations championships in a few months. I am hopeful that this is the start of a new era of Scottish rugby, an era of tries, good handling and opportunities taken. I celebrated a loss for Scotland yesterday, a good loss. I also have been celebrating my two year anniversary. Believe it or not, I have just passed a few two year milestones, two years since surgery, and diagnosis. I am beyond the statistics. Bring it on!!

I hear we’re about to enter a new era: it seems the Mesoamerican long count (Mayan) calendar comes with promises of a transforming event on 21^st December 2012. This date is special, Christmas eve, eve, eve, eve, special not just because there are only four more sleeps until FC comes to visit. I don’t think we need another global catastrophe just now, and personally, 2010 was a tough year, so I am hoping I can slide gently into 2013, with a positive focus, and if we have to have a Mayan transformative event, let’s hope it’s a jolly positive one, an era on contentment, peace, health and kindness.

My news is not of winning elections, though well done Barak O’Bama, I am very pleased you are having a second try. My news is positive, in that, on my third October trip to Glasgow, the MRI scan of my head, done in September, had finally been reported and the report awaited me. I was told that the report was a “sitting on the fence” report: there’s some good and some not so good. Overall, given that Phil the neutrophil had been prolific in friend recruitment, thanks Phil, I was able to proceed with cycle three of chemotherapy, a handful of lomustine capsules. I’m getting on with living, and remembering that Phil likes tough love and detention. So far I have tolerated this cycle well, with little nausea, some fatigue, but no infections despite the snotting and sneezing I hear everywhere I go, particularly on public transport. Please be a considerate citizen and carry a hanky with you at all times, just in case. I’ve been trying not to cotton-wool ball myself and excessively wrap myself up as a germ prevention mechanism. I’ve been tempted by a full face burke, medical face masks, and a snorkel and mask, to filter what goes into my body. My only annoyance wellbeing-wise at the moment is my hearing in my right ear. I feel like an old lady, I have to position myself, angle my “good ear” towards to sounds I want to hear, and tune out the white noise in my right ear. It seems sixty grey of radiation to the right side of my brain may have had some long term consequences to my mid frequency hearing… so when you speak to me, if I appear to be ignoring you, please speak to my left ear, or at low or high frequency.

I’m still working and trying to balance the hours I work, with those I don’t. I’ve learnt that being part-time is tougher than it sounds: the discipline of not working, is one I need to develop. It is far easier to work more hours than it is to stop. People are used to having more of me, and it’s difficult to give and do less. I have to manage that better.

I am trying to be disciplined too, with my writing. I have started writing my book, my novel. I was knocked sideways by the amount of energy, effort, focus and control that it took to sit me down, and write the first word, the first line of the first sentence, the first paragraph, the first page of the first chapter of my book. I have done it though… the ball is rolling. I only have another 74,500 words to write in the first draft. Please don’t expect it to be in bookshops in time for Christmas. Thanks to those of you who have pushed and nudged and shoved me to “get on with it”. It is fun in and indulgent and gentle way, and I think my spelling is improving.

I’ve been enjoying some cultural treats too, with a trip to toe Royal Albert Hall to watch my friend John sing (along with 1499 other singers in the choir) in the “Festival of Voices and Brass”, a jolly big choir, two brass bands, the massive organ, plus some fiddlers and a piper. What a night, a musical feast as a Cancer Research UK fundraiser…. thanks John, I’ll be there at the next one. I’ve been to Cambridge Corn Exchange too, to see Deacon Blue, who looked and sounded as good as they did when I was in my twenties, and Alan Davies, who is on his “life is Pain” tour…. I could have told him a few things about positive mental attitude, but instead I chose to listen to him.

I woosied out of the “run to the beat” half marathon a few weeks back, leaving my neighbour to pound the streets of London at her pace, rather than at my painfully slow plodding pace. I pulled out after much consideration, but being mindful that I didn’t want to distract Phil from his friend making by knackering myself out. I did feel wretched about pulling out though, I felt guilty and lazy, though I knew I was doing the right thing in not doing it, and I reminded myself, that lots of my friends have never done a single half marathon, let alone one on chemo, so really there’s no need for guilt on my part.

The Barkway Belles, the group of handbell ringers of which I am part, have taken a firm grip again, and kicked off with a sight-reading performance of carols and a local village hall annexe ceremonial opening. We amazed ourselves, sight-read carols sounded better than practiced ones. We are open to invites for gigs. With that, I shall leave you and yours to the festive preparations and I shall go and continue my celebrations for being here today, more than two years on. Enjoy your day.

Living, Loving and Laughing

With big wet kisses and bone crunching hugs

Vix

For your on-line viewing pleasure, do take a few minutes to watch this, written and performed by one of the tutors from my Arvon writing course. Not only is he a clever bugger writing, he can do songs and play the guitar and sing. Makes you sick eh? Fat Old Bastards with Guitars (Terence Blacker)

http://www.youtube.com/watch?feature=player_embedded&v=pGIvND2TnFE#!

Do read Dawn French’s biography “Dear Fatty”. A gentle way of getting to know an amazing lady.

Autumnal Mistiness

Dear Friends,

I hope this finds you well, enjoying the changing colours of the leaves as they turn, the chill of the mornings and mistiness. As I watch the leaves fall, I feel in betwixt and in between, in a twilight place. A place of change: thicker jumpers, hats, gloves, scarves; working out how to turn the central heating on again, and lighting log fires.

I’m in a twilight place, as I’m in a waiting place again, after my September MRI scan at the end of cycle 2 of this chemotherapy. I waited for my clinic appointment, and prepared myself, results day. I prepared myself thinking that I was doing well, “looking good, feeling good….” I kept telling myself as a positive affirmation, but there’s always a voice of “what if” in my head. The news was not quite what I was hoping for: the scan hadn’t been reported by the radiologist yet. Big tut, and a bigger sigh. We looked at my brain images on the screen with the consultant, and Mum and I played “spot the difference” between the September and May scans. There are changes in my brain, so we need to wait, wait patiently, for the radiologists opinion. Irrespective of the scan results, I wouldn’t have been allowed to start cycle 3 of chemo this week, because Phil the neutrophil (you may remember his wayward behaviour from my blog back in March 2011). Phil deserves an ASBO. He again is a loner and lacking companions. My immune system is depleted, despite me managing this cycle of chemo pretty much free from bugs and infections. So, being immunocomprimised, means I delay the next whack of chemotherapy. The silver lining of this situation, which I have gotten very good at looking for, is that if the chemo is that good at wiping out my white blood cells, hopefully it’s equally good at wiping out redcurrant tuna cells. It’s an odd place mentally though. I’d gone up to Glasgow hoping for more chemo. That is one of those things that I never thought I’d say “I want more chemo”. Now I have been sent away, with Phil in detention as his performance isn’t worthy of an A*. We’ve been sent away for a week, to grow and mature friends for Phil.

Since I last wrote you, I’ve been keeping myself busy, living life to the full. I had my summer holiday in Yorkshire, at Lumb Bank, the Arvon Writing centre in Hebden Bridge. While I was there, Hebden Bridge made national news, which I like to think was nothing to do with me. There were floods and rain. It was quite moist, and as one would expect, I didn’t get a tan from my writing holiday in Yorkshire. I learnt to write. I transitioned, I think, from the verb, “someone who likes writing” to the noun”, “Vicky is a Writer”. It was a Life Writing course, as I have a book in me wanting to come out. It’s been brewing and stewing, and I need to work it out. Along with my fellow Writers, a heterogeneous bunch of story tellers, and our Tutors, we read, wrote, listened, constructively critiqued and reviewed. We learnt about voice, structure, construction and the narrative arc, or was it Noah’s? While it rained outside, we thought about beginnings, middles and ends. Now, I just have to write it. There’s a fire in my belly, stoked by my fellow writers and Arvon.

I continue to work, and recently was part of a consortium of colleagues from Academia, the Pharma industry and Patient Advocacy Groups, working on an EU-funded project to ensure that Europe remains a good place to develop new drugs. Concurrently I’m reading Bend Goldacre’s new book “Bad Pharma” are I am trying to make sense of his arguments, and what I know as someone working in the industry and as a patient advocate.

When I’m not thinking too hard, I have  been enjoying some treats and cultural stuff. I’ve been to Hanbury Manor for Afternoon Tea, a first for me, with my neighbour Julie. We surprised ourselves and behaved like right proper ladies. I’ve had a trip to see the Ukulele Orchestra of GB at the Royal Albert Hall. A combination of musical genius and sharp wit, well worth a watch. I was also fortunate to play my uke, to guest, with my friends “Red Diesel” who had a charity night in Welwyn Garden City, which included diverse entertainment, from Bollywood dancing, to comedy, and bandsmanship. Another night of musical genius and sharp wit. What a lucky girl I am!

Massive thanks to those involved in making the charity night such a success, we raised the roof and about £1K for Brain Tumour UK and Penny Brohn Cancer Caring Centre.

As you can see, our set-up for on line ticket sales was somewhat prehistoric.

At the end of October I will be taking part in the half marathon Run to the Beat with my neighbour Alison and some former rugby girls, if you want to join in, please do. I received my race pack recently, which gave me the hebby-jebbies as the T-shirt is yellow. I just wish they would choose more flattering colours.

Thanks again for your continued support and positive vibes and well wishing and hard praying. It helps, I am sure.

For your viewing pleasure, here are a couple of YouTube recommendations:
UKGB Fly me off the Handle http://www.youtube.com/watch?v=LUijx65ss9I

Still living, loving and laughing
With big wet kisses and bone crunching hugs
Vix xxx

Medals and Muddles

Dear Friends,

I hope this finds you well, and not too exhausted after all the sporty competition. I sit here, feeling humbled after enjoying a veritable feast of athletes and events at the Paralympics. I’ve sat, mostly on the sofa in front of the tele, aghast at the strength, power, determination that is so evident in the athletes. I’ve got new heros and heroines. Ellie Simpson, what a gem she is, as she oozes smiles and pride, with her team mate on her knees next to her. As she powered up and down the pool, not detouring from a perfectly straight line, it reminded me of the Blenheim open water swim. It got me thinking, that despite me having all four limbs and plenty of natural buoyancy, I’m not really a swimmer like Ellie. I have sat amazed at the rugby players, in their wheelchairs, impressed not only at the sturdy engineering of their chairs, but the skill, strength and tactics of their game. They are better at reverse parking and rugby than I will ever be. I thought back to the occasional moaning and whining that could be heard from the opposition and my teammates alike, after a few tough scrums, a big boshy tackle, and a face full of mud. I thought, we could learn a great deal from our paralympic rugby counterparts.

It seems the non-mechanical modifications to my Cycle have worked: thank you to the charming Prof Chalmers. A reduced dose has resulted in far fewer side effects for me, and although I am not exactly Olympic fit, I am getting on with what I can get on with. I keep on keeping on.

I was very fortunate to be able to go with Renee to the wheelchair basketball, and watch the Aussies beat the Yanks, and the Canadians beat Team GB. An amazing atmosphere and wonderful to be part of the hype. I’ve enjoyed the focus on “making the best of what we have got”, not dwelling on the bits missing, or the misfortune that caused the disability. Some useful lessons in life: be the best we can be, and keep playing until the final whistle goes. I hope that these games have changed attitudes of generations, young and old, attitudes about what it means to be disabled… the door has been opened for discussions on inclusivity and inclusion. I wonder how long it will be before we have able-bodied athletes in wheelchairs playing rugby and basketball. I wonder how long it will be before we have wheelchair archers competing alongside their able-bodied athletes. I wonder, tongue in cheek, how long it will be before we have wheelchair synchronised divers plummeting 10m from the high board, spinning and making and big splashes. I wonder if the playing field will be further levelled, and one day, if there will be a single competition of all athletes. Whatever, I think I am highly unlikely to qualify for Rio 2016.

I have managed to take another step backwards in my sporting career: I took part in the Dingle Half Marathon on 1^st September, with Sue, my friend from my University rugby playing days. I still run like a rugby player, apparently. I set myself a new Personal Worst time for the run: 13.1miles took me over three hours. Sue’s swanky gadget did tell us that we’d done a couple of 11 minutes miles, which means we did some very slow miles too. I did the same run last year, five days after finishing my six months of adjuvant chemotherapy, it was a celebration for the end of chemo. When Sue and I signed up to do this year’s event, I didn’t realise it would be to “celebrate” the start of chemotherapy again. I didn’t realise a half marathon on chemo would feel like an Everest ascent. Our goal was to cross the finish line unaided. We did it. We have medals of our own, not gold, silver or bronze, but they are medals with masses of meaning. Thanks Sue for letting me slow you down, and for keeping me company and in good humour as we enjoyed the scenery of west Ireland. This event has a half, full and ultra marathons, and has been described as “the most beautiful marathon in the world”. It is truly stunning, and I totally recommend it for all…. In addition to burning a few calories, we got to sample some local stout, for medicinal purposes. If you would like to support our athleticism in this event, we are fundraising for Brain Tumour UK http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=vixbigstuff.wordpress.co&faId=245110&isTeam=true   

I’ve been enjoying some chilled time as well as the hype and adrenalin of sporting competition. I had a fantastic weekend with my Somerset-Mum Ruth and Dad John before a few days at the Penny Brohn Cancer Caring Centre, doing the “Bristol Approach” course with some fellow cancer patients and supporters. It’s a lovely place, where it’s safe to peel back the layers of psychological and emotional scarring associated with a life with cancer. We metaphorically pick at scabs and are workshopped, counselled and take time to think, and to stop thinking. I realise how difficult it is to calm my brain and meditate. I don’t think it’s anything physically to do with the visiting redcurrant in my brain…. I just find it very difficult to slow my brain down. One thing I have kept doing and reminding myself of, is chewing. We need to chew our food more. So when you next sit down to dine, or if you’re eating as you read this, please take time to chew and count thirty chews per mouthful before you swallow.

Lindy and Andy visited from the US with baby Florence, so I was able to meet the baby for whom I was held responsible. Florence, is of course delightful, she comes from very good stock, and was the calmest most smiley babe despite her jetlag, but just like all babes, here shit was as stinky as ever. She enjoyed doing some piano duets with me, and we took her for her first curry… 

Kate and I went to BBC last night of the Proms in Hyde Park, along with thirty thousand others. We picnicked and sat and sung, foot tapping, and chilling, enjoying a diverse mix of classical and typical Proms music, and, the headliner, the Goddess Kylie Minogue. We are still spinning around, she was fantastic… I find it hard to believe that she’s three years older than me.

It seems there’s been some headlines that made the papers, and they got me most excited. I thought I should share them with you, and if anyone can help with the miracle cure for me, I am open to offers. 

Life goes on past the closing ceremony, and I’m preparing for a couple more brain tumour awareness and fundraising events before the year is out. My friends and Alex, Greg and Matt, who make up Hertfordshire’s finest middle-aged boy band “Red Diesel” asked if they could do a charity gig for me…. and knowing that these fellas love the opportunity to get on stage and please the masses, rehearsals are underway. Please do come and join us and help us raise funds for Penny Brohn Cancer Caring Centre and Brain Tumour UK. It’s not exactly a Tom Jones-type concert, so please keep your undies on ladies. Click here.

Thanks to those of you who have already entered for VixHardTry, the Blenheim 2013 triathlon. I am glad I will have some companions to get in and out of my wetsuit with in June next year. At the end of October I will be taking part in the half marathon Run to the Beat with my neighbour Alison and some former rugby girls, if you want to join in, please do.

Thanks again for your continued support and positive vibes and well wishing. It helps me I promise. Although I do a good job of putting on a brave face, manning-up and stiff upper lipping it, it’s not all a stroll in the park.

For your viewing pleasure, here are a couple of YouTube recommendations:
 http://www.youtube.com/watch?v=Z-zRPDvTJTo&feature=youtube_gdata_player

If you are considering a new pet, or not, this is definitely worth a watch. It made me think, we remember how we are brought up. http://www.youtube.com/watch?v=i5vRPKIS5UM

A bit of reading for you: “Before I go to Sleep” by S J Watson. Something outside my usual reading habits, but entirely gripping and worth the read.

Still living, loving and laughing
With big wet kisses and bone crunching hugs
Vix

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.

Vix

xxx

Midsummer Meyhem

Dear Friends,

It seems my last blog update was a little too long for some of you. I do apologise, I didn’t mean to make you strain your eyes or doze off. I will therefore, in response to your feedback, try and keep this one somewhat briefer.

Epic news first, is that VixTriAgain, the Blenheim Triathlon, resulted in a new Personal Best for me. It seems that triathlons when not on chemo, are easier, in relative terms, than when chemo is flowing through one’s veins. I didn’t over take any of those TeamGB folk, wearing red, white and blue all in one lycra outfits, though, with the help of my athlete companion Jacqui, and the fantastic possie of supporters and contenders, I did manage a sprint finish, and tears on the finish line, a mix of sweat and tears, an awesome saline blend. The epic news is that despite the inadequate swimming and cycling training, I did get in and out of my wetsuit, and in and out of the lake, and my leg over my crossbar, unaided. I realised that when I jumped into the 13 degree C lake, that it was a year ago when I last had swum. That could be described as silly, but it seems that the benefit was that I hadn’t over trained, and I managed the 750m swim without a stop. The transitions were not swift, and the 20km cycle wasn’t fast, and the 5km run wasn’t exactly record breaking, but we did it. There were some basic rules on photography, so there should be no evidence of excessive flesh or folds, no double chins, we should look like triathletes, of sorts. We had a lovely weekend, participating, supporting and getting a good dose of laughter therapy. Massive thanks to those who took part athletically, vocally and picnicing. I have thought about VixTriAgainII. I am hopeful, and am trying to be positive that (a) I will still be able to get in my wetsuit and (b) I will be capable of the 750m swim, 20km cycle and 5km run.

News following my nine month follow-up scan at clinic in Glasgow on 18th June, was not what I was hoping for. Given that I have been mostly feeling well, albeit with intermittent metallic moments, mild headaches and occasional anxiety, I thought that was pretty good given the enormity of what my brain has been through and the emotional roller-coaster I’m riding on. I was convinced that I would be met with a smile from my Consultant, and he’d tell me in oncological terms to “bugger off” for another three months. It seems that I had perhaps become blinkered to other possibilities. I was taken low and hard from the blind side. My Consultant, showed me with the end of his pen, pointing at the MRI images of my brain on screen, he showed me something neither of us were hoping to see. He showed me a patch of contrast “enhancement”, where there was a distortion of my ventricle. My brain was not symmetrical before, and now, it is even less so. The end of his pen pointed to distant recurrence. The same tumour, the same disease, in a location relatively far from the original site, in terms of brain geography. The good news is that there is no sign of recurrence of the tumour at the original site in the frontotemporal region, but this new blob, the distant current in the middle of my brain, the corpus collasom, is the start of my next chapter.

Plans for more chemotherapy are made: I have instructions, and a bag of drugs, and I too, am ready for starts orders as the capital readies itself for the Olympics. I will start my cycling event soon, with the first cycle of chemotherapy, procarbazin and lomustine. Before then I want to enjoy my cousin Neil and his lovely wife to be’s wedding. I want to enjoy this family celebration, free from fear of fatigue and nausea and vomit. I will enjoy a few glasses of bubbly before having to decline alcohol for the next nine months or so, as this chemo needs me to try something new, and given up alcohol. Fancy joining me? Do you think it is possible to be alcohol-free until March 2013? The invite is there if you want to join me.

I am disappointed in myself: I thought I was doing so well. I thought I was well, relatively speaking, both in body and mind. I was gently getting excited about the possibility of being able to drive again next year. After my driveway driving on Skye, I was beginning to fantasize about my next car…. something that would be a pleasure to drive, that you can go topless in, let the wind blow through my hair, albeit shortly cropped. But, the DVLA’s rule of ”two years from the end of treatment, has just been re-baselined. I had been prematurely in my starting blocks considering my future freedom. I hadn’t realised I had grown a blind spot. My blind spot is nothing to do with pimples or acne, it was a future-focused blind spot: I had been feeling so well, that I had almost forgotten that recurrence was a possibility. I had pretty much scripted in my mind, written the scene, for my clinic visit, my results, my elation, and it didn’t play out. I didn’t see it coming. I fell a long way down. If we make a mathematical sum, to quantify disappointment, it could be expressed as “disappointment equals expectation minus reality”. My expectations were high, reality was shite, and my disappointment was off the scale. I have cried lots. There has been midsummer emotional mayhem. The drought in the South East should be declared over.

I am disappointed in my fecking tumour: it seems to have not taken notice of the “YOU ARE NOT WELCOME HERE” message it was sent in 2010-2011 with surgery, six weeks of chemoradiation and six further months of chemotherapy. Surely that message was LOUD and CLEAR. It must be the daftest fecking tumour, fecking brain tumour, in the world. You would think that as a brain tumour, it would have more brains that to pick another fight with me. You would think it would have sensed my steely resolve, my tough-old-bootiness and it would smell the fecking brainy coffee and PISS OFF, PISS RIGHT OFF. But not, distant current, same tumour, difference place it is. The next battle begins, and I am preparing Eric the Erythrocyte, Phil the Neutrophil and Peter the Platelet to climb the mountain with me. At the moment, the chemo battle ahead feels like I am embarking on an ironman triathlon with no training, but my Consultant said to me that I was fit (and I don’t think he was coming on to me) and that put me in a good starting place. BRING IT ON… if anyone can take it, I can. I hope.

I’m sorry for the shitty news, I’m feeling sorry about the uninvited current in my head… and feeling very sorry that Guinness won’t be able to help me though this chemo. The no alcohol rule is just salt in the wound. Other than an alcohol-free life, I am going to try and carry on being normal, as normal as I can be. I plan to work when I can, and would ask that if I smell of sick, or have any dribbles on my chin, that you discreetly let me know rather than laughing behind my back.

Please do get in touch and share your news with me, I will be needing some distraction, so don’t be shy.

Still living, loving and laughing
With big wet kisses and bone crunching hugs
Vix xxx