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.(http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Ipilimumab.aspx). 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!
Randomly just had you as a ‘friend suggestion’ on instagram (shows how much I use instagram) and found this blog - god I miss you Andy!
ReplyDeleteBittersweet as can hear how scared and alone you were behind your humor but in a way it gave me a chance to remember you and your absolutely cracking spirit and sense of humour.
I remember so well the lunch where you told Lena, Amanda and I, how scared you were behind the positivity but so bloody resilient and resolved - even right up to the very end.
It breaks my heart that you never made it to Lisbon - but, the gays and I did you proud Keano (of that I can promise you!) - you would have loved our ‘dress as Andy night’ complete with bright chinos and a mismatched shirt haha! You would have howled and not let me live it down when said chinos split as I slut dropped in the off license or when I got questioned by passport control as to me being British on the way home!
I often think of you and have wanted you call you for some straight talking advice/ or just a bitch more times that I can count over the years! I would have loved for my kids (Andreya (yes, she was named for you!) and Elowyn) to have their crazy gay uncle Andy around - though I full appreciate you would prefer them at 18 rather than 7 and 1 hehe!
Not sure why I’m writing on the blog but some small part of me thinks you popping up on insta after 11 years is a sign you’re still here and watching over us all! I miss you Keano - until we raise a glass again my dear friend xx
PS yes, I know grammar isn’t as good as yours and you are up there correcting my comment and tutting to yourself!