Starting with I had a great birthday and really was spoilt. It's weird it all went so quickly but also slowly. I suppose I've only really got a few recollections of pre birthdays and post birthdays...the not so great being the coming home on my birthday after surgery and the great being not needing to worry too much about the little blighter and really going for it (insert party cannon here! ps still not had one of those just so you know!) This year I asked for minimal fuss but we still managed to fit in lots of lovely things and it really was at the right pace...body also decided 'I know what...let's chuck in a cold for good measure!' It's fine as we've still managed to have a great time, and also my theory is it wouldn't be a holiday/birthday/anniversary/celebration if someone wasn't ill ha! and I'd just been saying before now how lucky I have been in that I've felt so well and not had any bugs/viruses in the recent months, so I guess that's showed me not to get too complacent!
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| All the gorgeous birthday things- thank you guys xx |
So just bringing it back a little. As I think I explained back in April is when we found out that BT is growing again and it's heading towards my SMA region. That's effectively where the brain helps out with all kinds of functions from movement to the formation and understanding of language. I had so much stuff planned for the Summer (some of which was cancelled- Jamiroquai :( but Jay Kay was having surgery so we'll let him off!) so my Surgeon agreed that I could take a 6 month break if you like and revisit again in August.
So that's what we did...we had a break, I saw my Surgeon again in August and it's been all systems go ever since. I've had every type of MRI/scan imaginable including a visit to The Macmillan Centre where I had a PET scan- this is essentially an MRI but where they inject you with a radioactive dye so that they can see inside my head in fascinating 3D colour! The dye had to come all the way from Cardiff so once we arrived we sort of sat for a bit and then approx 20 mins later in came the courier with the stuff. I asked if they have anything else that they bring it up with, but apparently it was just that! I couldn't believe it, but I think it has something to do with making up this particular type of stuff on the day and then taking it away to be used. I had to avoid children and pregnant ladies afterwards travelling back on the train but it was fine as it wasn't rush hour. You don't really feel ill afterwards as such I just felt a bit rubbish I think for the long scan etc- I'm not the best at laying still for hours on end, however I suppose you get used to it. I also took part in a voluntary extra scan which I believe is going to go forward with evidence for other brain tumour patients in conjunction with my hospital and Great Ormond Street to show the effectiveness for diagnosis in giving PET MRI scans to all patients...so let's watch this space- I am always happy to help out and do my bit and what was an extra 15 minutes when I'd already been in for about an hour and a half!
So back to the now. I'm just waiting really. I've had a pre admission clinic, I've met my new Anaesthetist and now we are just awaiting one last appointment this week to discuss the results and then I guess it's away we go. I am nervous of course and anxious but the past weeks I have sort of mellowed a little which I think means I am ready for this now. The prolonged agony of the wait is sometimes worse than the actual thing I think so I guess I just need to get past this bit now. I am not sure if I explained before but I am meant to be having the whole procedure awake but this very thought alone has caused me a few nights of being awake so I think I still want to ask if we can do what we did last time the combination of asleep/awake/awake which essentially means when I am woken up I'll be in the main surgery and awake for closure and I've just sort of figured if I coped with that ok last time e.g that's my understanding of an awake surgery then I think surely this time around it should be fine. The brain itself doesn't feel pain, but the surround does so they can give you local anaesthetic for this however I do recall some pain and I suppose like any human, this is what we can fear most. I know I am in excellent hands and that they will do their utmost to protect me and ensure my comfort, it's just having a little bit of control over this makes me feel more content about it.
I don't know what the future holds for now but what I do know is that I need to try again, keep going and just take it all on again the best I can. It's a long recovery but I will update here and may even start a little vlog going again, who knows! I only got round to making the 1 video last time so I think a 'craniotomy- part 2' is due for all those who are interested!
Big thanks and love to all those who have been continually awesome- there's too many to name names but you know who you are xx
All my love,
Gem Xx
Quick edit...a huge thank you to all that sponsored and supported Carl for his Sky Dive on behalf of The Brain Tumour Charity! He did amazingly well on the day and we made some awesome memories! He said there is no experience quite like it :) He's been brave so now it's my turn! Eek! I'll leave his little certificate here...ever so proud! xx
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| Can't say thank you enough guys! xx |
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