Wednesday, 23 October 2013

Accepted onto medical trials!

So the past month has allowed me to do a fair bit of thinking (and additional eating for that matter - 6kg of weight gain so far!) Damn these steroids and their ability to make me consume chocolate and biscuits like a horse. As I try to tell my mother this excess is neither good nor flattering for me. The sooner I can get off the devil pills (aka Dexamethasone) the better in my eyes! On top of their fattening abilities I've been told by the doctors not to drink on them. I have ignored that slightly over the past couple of days and allowed myself one small glass of red wine whilst at dinner with friends. Two-three hours to finish off a small glass of wine makes me feel so grown up. Haha!

So I've been at home for a month now recuperating from my shark attack. Cue Google searching and lots of self prognosis. Never probably advisable but it's opened up a lot of literature for me to read and has given me much more of a positive outlook

How I see my initial prognosis is the following:

  • Yes it's not the best news I've been diagnosed with. I don't think there are too many if anyone who can say they're settled with being given a terminal cancer diagnosis. 
  • I'm young (28 is still young - I refuse to accept that I am over the hill!) with besides the dreaded melanoma in a state of good health. Spoken to the doc and I should be able to withstand any of this medication they intend to throw my way better than people who have other illnesses as well or a great deal older. Bring on that fight is all I can say!
  • Now another weird/ bizarre ray of light that I actually am thanking my lucky stars about is the following. This little package of fun only reared its head due to my headaches and funky vision that I suffered from. Due to this I was then given a full body CT scan which made the little beauty on my Pancreas show up. How I see it as is that I hadn't had my headaches then nothing would have been done and my pancreatic tumour may of grown a lot larger to a state that it was inoperable. So I consider myself quite lucky in a warped way that I had symptoms. 
So here brings me onto a great bit of news. This  has definitely given me a huge spring in my step! My MacMillan nurse initially discussed a BRAF mutation that they are currently looking at for all Stage IV melanoma patients at the moment. Should individuals have this mutation (typically 40-60% of people do) it allowed them to go onto a new wonder drug (I shall refer to them as my 'magic pills' going forth!) called Vemurafenib. What this does is reduce existing tumours and stops new tumours growing in the majority of people that go onto it. Yes there are side effects - extreme photosensitivity (Factor 50 even in the winter sun in the UK - Casper the ghost is definitely going to become a reality!), fatigue, achy joints being the main ones. Not everyone gets side effects and some get them in a more serious state than others.

So good news is that I have the mutation. Hurrah!! Bring on the medical trials and getting my life back on track. 

So I'm off to London tomorrow to collect my first lot of magic pills which should be good! I've had a meeting with the Royal Marsden regarding having Gamma Knife surgery to operate on the remaining brain tumour I've got which hopefully should be done in early November. Good thing is I'll only be in for the day so no more hospital stays. Woohoo and the side effects (hair loss on the patch they target and it can grow back a different colour and different texture to what I previous had - I've signed myself to looking like a badger with an afro hair spot on the side of my head!) aren't bad at all!

I've been up in London a couple of times in the past few days. Catching up with friends over dinners, a few rather early nights out and also meeting up with work regarding returning in some form. To be honest I'm focusing on returning to normal or as close to normal as possible. Looking at the end of November at the moment but I really won't know until I start with the magic pills and see what the side effects (if any) are! 

So that's it for now. 29th Birthday in a 10 days time which I am focusing on. Dinner booked in Clapham and hopefully I'll be up a for a good night out afterwards as well. Just have to hope we beat the Aussies in the rugby. Shouldn't be too tough but you never know with the cheating Southern Hemispherites. Definitely something to focus on and look forward to.

And to top it off my shark attack (or rhino attack as one of my friends said) is looking far better than it was a couple of weeks ago. 

Any questions please ask away/ contact but I'm in a very positive frame of mind. Nothing I can do can change what I've got, I'm on the break through drug which has seen great results and have a great team of doctors working with me. I'm good, parents are now a lot more relaxed I think than they were and I believe I can beat this evil thing that's set up shop in me and from speaking to my melanoma specialists there are a lot more drugs waiting to be approved which has further boosted my mood!


  1. Andy La!! Truely inspirational. I know we use to joke about you being a whinging pom however its so good to see you are taking a positive outlook on such a terrible situation. I hope you have a great birthday dinner, wish I could be there!!! Ps- I will overlook the comment about the Southern Hemisphere Cheaters xxx Fitzy- La

  2. Woop for the magic pills! Also, for the love of god man JUST EAT THE CHOCOLATE. Surely it's bad enough having the big C without cutting out the little C!

  3. If you are not Casper the Friendly Ghost Badger this Halloween I shall be most disappointed!