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