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

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16 thoughts on “Midsummer Meyhem

  1. Vicky, I am so sorry and have just read your news. You are still amazing, tough as old boots and your fitness will be such a strength and help you through this. So keep up the fight and kick it into touch. With lots of love to you, Alison Hendry x

  2. Hey Vix, am so sorry, just heard your news, am gutted that you have to undergo the chemo scenario again! On a positive note the recurrence must still be small still since you haven’t had any symptoms but totally understand what a blast it must be when you are feeling so well!
    Floyd would love to give you a cuddle to cheer you up! Are you about any mondays or fridays soon for a catch up? Or let me know if you need any lifts anywhere or if I can help with anything – I am only around the corner (assuming you are down south at the mo :0)
    Big big hugs
    Sadie xxxxxxxxxx

  3. Agree this absolutely sucks! And that you are so so SO not alone!! Crank up the Live-O-Meter, Love-O-Meter, and Laugh-O-Meter to warp speed and blast that beautiful brain of yours. Super charging healing thoughts direct to you from me. XOX!!

  4. What a huge blow Vix, everything was going so well. I can’t imagine what you must be going through …… well I can hazard a guess its even more of a roller-coaster of emotions, interspersed with nausea and vomiting since you started chemo? …. but I’m probably completely wrong! You certainly don’t deserve this. You are such an inspiration to all – in the amazingly descriptive/ visual and very entertaining way that you write, (you certainly have me laughing and crying at the same time too!); in the way that you have accomplished so much physically since your first diagnosis and in your so hugely strong and positive attitude – I’ve never met anybody so amazing and inspiring like you! This is tough, this is hard to take, but you have it in you to fight this too. Hang on in there through the lows, nausea and exhaustion, we are all willing you through this. It won’t be so hard for me, (I think!) but I am willing to go 9 months without alcohol with you too ….. now its in print!! I think of you often and hopefully you will receive some positive vibes coming through.
    big hugs,
    Jenny (Dave and Niall who say they are no good with words).xxx

  5. Hi Vicky You won’t remember us – Roger & Sue Eagle very long term friends of your lovely Ma & Pa. We remember you being born!!! We always read your blog and follow your progress & feel for you so deeply. Like Ann, your writing makes me laugh and cry in almost equal measures …. Please don’t don’t feel disappointed in yourself – you have been & will continue to be, an amazing person – nothing can take away from that. We both wish you love, strength and moments of calm. Roger and Sue xxxx

  6. I cannot believe your damn rotten luck, Vicki, after everything was going so well! Never mind, I know that you are a tough old thing – physically, mentally, emotionally and you will knock this tuna flat as well. Keep positive Vix and keep sending those wonderful blogs. All our love from downunder, best wishes, Mike

  7. Vicky keep living, loving and laughing…just a small chickpea to bother you again, but you will fight it and win! You are not alone, we all know that you are really strong and that small chickpea will soon run away very scared 🙂
    I am up to the challenge of the “free-alcohol” life… Let’s organize it…minimum 2 weeks and max 9 months…you decide where the money collected should go :):)

  8. Vix, this makes me smile … then laugh … then cry. You have an amazing way of expressing the impossible. My heart bleeds for you. Stay strong. All love, Moms
    xxx

  9. Sh*t, sh*t, sh*t! That sucks Viks, on a major scale of suckiness!! But you’re not alone. We’re all in this with you and we’re not budging, or at least til that pesky tumour gets the message. Let me know if you’re back in the Weeg for treatment so I can pop through – and your bed in sunny Edinburgh is always available for you. x

  10. Vix, you have absolutely NOTHING to be disappointed about. We all dream of and make plans for the future and I am sure that is one of things that has given you the edge over this illness. Don’t give up your plans and dreams, this tumour has no idea who it is dealing with.

    The only thing we ask is that you plan another trip to NZ so we can show you around and venture to the south island next time.

    Love and a huge hugs from Simon, Freda and I. Sending you the strength you need to get through the treatment.

  11. Hi Vix, it’s Mike, we met in Taupo – I was with a mate of mine called Colin and we were from Wales. I have been following your trials and tribulations and have to say you are very inspirational and I’m sorry about your recent bad news but, if anyone can tackle this then it’s you. I hope everything goes the right way for you x

  12. Don’t ever say you are disappointed in yourself, Vix! You are an incredible inspiration and we’re always full of admiration for you! Keep strong and fight it with all your might, it’s just testing your resolve! Massive hugs and positive thoughts and vibes from us, Hayley and Rob xx

  13. Well you enjoyed a bloody good wedding and now the fight begins (again). You can do this. It won’t be easy but you know what to expect this time.
    You keep strong girl and if you ever fancy a chat I can do distraction. Emma has my number.
    Keep inspiring.
    Claire xxxx

  14. Speechless for once, what a complete and utter bugger Vix and so unfair!!!! Still, if anyone can do battle and overcome it you are just the ‘gal’ and you have your family and so many friends to support you!!
    Huge hug and positive energy from Cambridge, Heather xx

  15. Oh jeez, I am lost for words and angry on your behalf that it has dared to come back. I know you have the strength and determination to beat it and I wish you every success over the coming months with the treatment. Go get it girl, all guns blazing. Ali xx

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