Wednesday, 7 May 2014

A new fancy dress face mask - Oh and a bit of brain zapping!

So I realise it's been a while since I last updated this. Glad to say on the whole that things have settled down and normality (if you can call it that) has returned. I'm back to work full-time which I'm actually enjoying. Get a few strange looks from people when I tell them that I enjoy being a tax accountant but I'll blame it on the medication!

So I've had a great holiday in March to the US - San Francisco with 6 friends for 4 nights then to New York for 4 nights to stay with another 2 good friends. Really nice to get away from the UK and just forget all the past few months behind. Plenty of partying, good food and doing general touristy stuff - Napa Valley, Alcatraz, Golden Gate Bridge & Intrepid Museum to name but a few.

Side effects from my Vemurafenib have been coming on a bit more in the past few months. Namely my feet which are really quite painful - thickening of the skin so walking can be a bit painful and also an increased hyper-sensitivity to the sun so I just need to remember to where high factor (50+) sun lotion. I've forgotten that a few times and have burnt in literally minutes - even in January in the UK. Didn't think that one was possible! I've also noticed that I am losing my hair quite a lot which is a little bizarre - under arm, leg and arm hair have noticeably thinned and my eyebrows/ eyelashes have also thinned. Small things like a constantly runny nose and watering eyes are side effects of these. Tiredness comes and goes. I have found myself sleeping a bit in the afternoon and definitely no more big 4am finishes at the weekends (or weekdays and struggling into work!) anymore but at the end of the day I'm just a 29 year old guy and f*ck this disease is my theory. I'm still going to live my life and have a good time at the end of the day - off to Rugby 7's this weekend at Twickenham. Monsters is the theme so I shall be on the lager all day dressed as the Honey Monster. Sunday I reckon will be spent on my sofa but we shall see!

I was meant to go to Mykonos last week but went down with norovirus and spent 3 nights in hospital. I'd read about this in the news whenever an outbreak occurs but it was horrendous. Vomiting blood and not being able to eat for 2 days is frightening at the best of times. Luckily it was just norovirus and nothing more sinister with further tumour growth.

Back on the mend now and had a follow up with both St. Georges and the Royal Marsden today. St Georges was the results of my CT body scan which came back really positive - further reduction on my pancreatic tumour (down to 3.7cm x 2.2cm now from 4.2cm last time so starting 7th cycle of Vem) and whilst they noted that there were some nodules on my thoracic wall they weren't concerned about them so hurrah! Royal Marsden was not the news I was after to be fair.

I had an MRI scan of my head two weeks and got called back in today to be told that I had two small nodules in one of my original tumour cavities which they wanted to zap. Additionally, there were abnormal spots in the lining of my brain which have appeared since my last MRI scan in October so they want to do whole brain radiotherapy (WBR).

So starting from next Monday I will be having 5 sessions of WBR to try and keep these new growths at bay. Side effects have been explained to me - potential for tiredness, nausea and the likelihood to go as bald as a coot at least periodically but for those of you that no me the latter is not going to be a massive issue! I'm not too sure how to take this news - yes it's shitty that it looks like the cancer is growing more but it's good that they've caught it and have an action to hit it. I plan to remain going to work - mainly as it keeps me sane and doesn't let me dwell on things too much but we shall have to see. I guess quite selfishly but my social life doesn't look like it's going to be harmed - I was quite insistent on that but what with missing three holidays in the past 7 months already I've got 30th birthdays, wedding and departing the UK parties all coming up in the next 6 weeks that I would be quite upset if I couldn't attend.