Thursday, 24 July 2014

You win some, you lose some and sometimes you don't know whether you're winning or losing...

So it's been a couple of months since my last update and once again this update is something of mixed news unfortunately.

I'll start with the last few months - I've been on Vemurafenib (what I have always classed as my 'magic pills') since last year with a few breaks for radiotherapy or surgery but mainly I've been on it full time and on the full dose whilst also being able to go to work and not have any days off which I've been really proud of. It's certainly helped my parents having this case of normality and also helped me so that I haven't dwelled too much or just sat around my house doing nothing.

One not so good thing I've recognised however is nausea kicking in and even though I want to eat just can't physically bring myself to doing so. I've lost 11kg since March and am now down to 67kg which for someone of my height (6ft 1) is too light. I look ill and gaunt so have been put on these nutritional shakes and powders to try and bulk me up.

Last Tuesday I met up with my parents and mentioned to them that I just felt a bit off (headaches etc. ) which reminded me of how I felt before I got diagnosed with my brain tumours last year. I had my oncology appointment on Wednesday and was put in for an emergency CT scan which I got the initial report of on the day to be told there was nothing to report. Elation! A call from the nurse on Thursday at work however told me that that they'd missed two small tumours (6mm and 9mm) in my original tumour cavity and that I should stop taking Vemurafenib as it looked like it wasn't working - Kick in the gut! Then to top it off I get a call on the Friday that they'd taken a closer look and found multiple tumours in my brain and they needed to see me ASAP and because I'd already had WBR that I couldn't have further radiation on my brain. Needless to say last Friday I was just gutted. Told at work over the phone and having previously thought there was nothing exceptionally untowards I had to call my parents and then did as much as I could last weekend to take my mind off things - had a good friends 30th black tie birthday on the Saturday night at his which was amazing (David - top party - my champagne head appreciated it on Sunday morning!) and then just vented with another friend on Friday night (cheers Piers for being a good shoulder) and then Sunday lunch catch-up with close uni friends (cheers Ria, Leena and Amanda) meant that I was OK when I went back to work on Monday morning - yes work but as I said it keeps my mind off things!

Had the quick booked oncologist appointment on Wednesday with my parents present. Saw the Professor I'm seeing and basically in short I'm off the Vemurafenib which I already knew and being moved onto an immunotherapy drug called Ipilimumab with my first dose on Monday.( In short this involves ramping up the bodies immune system so it attacks the cancer cells. A 90 minute infusion of this drug every 3 weeks for 4 doses in total should be all that is needed. There has been good results from it and positively there is additional medication afterwards for me. Also which has really thrown me is that the Professor has said he doesn't agree with the Royal Marsden by saying I can't have Gamma Knife radiotherapy to zap the tumours in my brain as I've already had WBR he has a colleague who works at a Stockholm hospital and also the Cromwell hospital in London that is doing Gamma knife surgery on patients who've already had WBR and he wants me to have this treatment! So fingers crossed the detailed MRI scan I had today shows no more brain tumours and I'll be eligible for the gamma treatment as well.

Been told that I can't drink alcohol for the first 3 weeks of being on this new treatment - dad found that particularly funny and also that I can't fly due to my brain tumours so my planned holiday to Amsterdam next weekend has been cancelled (4th holiday cancelled in 8 months!). I'll be looking for boating and train holidays for the next couple of months.

Well that was a bit of a longer post than I thought but seems like I had a lot to say! Now all I need to find myself is a 'special friend' as my mother phrases it. I've had this conversation with my parents and my friends in quite some detail - I'd love to have someone that I can just slob out on the sofa with or have lazy days with but I can't deny that I've got 'baggage' and it would take a lot to expect someone to be able to accept and support that. Let alone the delightful world of judgmental gays where unless you're some muscle-bound, bronzed adonis with a full head of hair who is able to party until sunrise your chances are further diminished! But thats enough of my self-pity for one day!