Ok I failed it has been a month since the last post. To be fair a week of that was spent in Sorrento, Italy with my wife and kids and we had a fantastic time. In the build up to that was more hospital visits as my wound recovered from the left groin dissection. It has healed quite nicely and best of all just before we went away I was told it was well enough to get in the pool and/or the Mediterranean on holiday and I did both. My seroma still lives with me but is not a pocket size lump which to be honest is hardly worth aspirating now, it's more hassle going to the hospital and them trying to get something meaningful out of it then living with it and hoping nature takes it's course. So the big news was I am N ras negative which means I could not take part in the Permisertib clinical trial. I found this out the day before our holidays and was strangely downhearted albeit I knew there was a back up trial and there was no way I could do both. It felt like bad news. On our return from sunny Italy to cold Newcastle we were off to the Bobby Robson Centre again to discuss the Pacmel trial. I must say that up to press I have been more impressed with the NHS in terms of my physical surgery and recovery than I have with the clinical trial team who seems to be a bit unsure about everything every time I meet them. Not what you want really. Anyway the trial was well explained, it's randomised so it's Paclitaxel chemo on its own or if you are lucky you get it with a Mek inhibitor or another drug that seeks to prevent blood cell growth in tumours. Here's hoping... I agreed to take part and next week I go in for CT scan, ECG, blood and eye test etc to see if I am fit enough and get a baseline. The CT is a worry as it's been 12 weeks since my last one, what's happened in three months? Will find out soon, I want to know and I don't. The timing if this is immaculate as I go back to work the same week so as I try to engage my brain in work as a Director in Local Government ( reminding me that I was only in the job ten days before being whisked off to have my lymph glands removed) I also juggle multiple hospital appointments and information and of course life itself. My worry of course is that the chemotherapy makes me unfit for work again or that I am able to get into work but be totally useless. I have been warned I could get forgetful and "spongy brained" so just how I am going to lead a service i am not sure biput it's pointless worrying about that now, I may be ok. Work have been good to be fair, I have not been in now what seems like years but is about 9 weeks in reality so that will be weird anyway, add to that what's on the horizon ( including hair loss) it's going to be bloody awful. We are all worried, even my Mum who visited yesterday seems to have found her compassionate side at last after months of " we will do what we can but we have our own lives". Yesterday I was on Radio five live, I was in the shower and there was a debate on whether to live a shorter life healthy and well and let cancer take its course or get treatment and be unwell with the potential of a longer life. For me it's a no brainier with young children but for some I can see why the non treatment option would make sense. Good luck to us all. So I managed to get on the Victoria Derbyshire show for my two penneth. It was weird really as I don't do that sort of thing naturally but I really wanted to phone up and speak. I listened back later on I player and don't you just hate hearing your own voice. Yesterday was Halloween and mine was spoilt by an incredible pain in my left eye. I am worried its cancer related. Eventually my wife persuaded me to go to hospital and many rigorous checks later I left with some eye drops. The doctor to did not think it was related but I could tell he was not 100%. I am 41 but still consider myself very young in outlook etc but I would say he was mid 20's and I felt old yesterday. Despite my absence the kids enjoyed trick or treating and they came to collect me with Victoria high on sugar rushes. The expected bedtime drama played out as two tired kids full of sugar went mental and what with my eye I just did not have the energy to deal with it....is this a sign of things to come I wonder. We are now needing to have to speak to then about what happens next given my hair will fall out and my wife as ever has the answer that I need to take extra strong medicine to cure my leg, so strong my hair will fall out. Our childminder suggested I shave it all off pre treatment for children in need, a grand idea but I am not sure I have the energy to do all the sponsorship stuff around the doors, school and work. Plus what with that, radio five live and recently posting an every moment counts on cancer research UK, [edited] every moment i just feel life right now is cancer, cancer, cancer and I am feeding the machine. For the first time with my eye and a bad headache I feel unwell after months of never feeling better. I need some rest, some sleep and to get fit for what lies ahead. Until next time which I must try and make weekly.....
