What If?

"What if..."

A constant question that goes around my mind about 1000 times a day. It sometimes lingers, it sometimes passes quickly but when it pops in it’s sometimes really hard to make it quieten down. The most frequent time it strikes is at night. The quietest of all the times when it seems my mind just wants to keep me awake all hours (particularly on a school night too, which is uber helpful!) 

If in doubt write it out on a pineapple sticky note right?

We saw my team again in early November and surgery is now planned for beginning of December. The risks were highlighted again with the main one being permanent mute (at the severe end of the scale) but lower down could be a speech impairment. That’s not something I can really properly comprehend at this stage and I think the sort of person I am means I want to cross that bridge only if/when we come to it. I was asked before to think about what I felt were acceptable deficits and unacceptable- honest answer, I don’t know, how can I know? The activist me, asked if there was a tick list or spreadsheet that I could merrily complete. It doesn’t exist. I thought of making one, but how can I possibly think of all the functions that are important to me, and what if I forgot some...this is where the implicit trust between my Surgeon and I comes into play. 

In the same breath it’s all so confusing, I want the surgery and feel so lucky I can still be offered surgery, however the risks this time around are much greater, but how does one weigh it all up? All I know in my heart is that I feel really there is no choice, if I choose not to go ahead the only likely outcomes are further progression/ change in tumour and/or the tumour will cause these issues anyways with my speech- it had to choose my most favourite bit didn’t it (I’m gonna say it) ARSEHOLE! 

That aside, physically I am well. I’ve had a few bugs etc but I think in terms of general health, right in this moment, physically I’m doing ok. I was potentially diagnosed with Trigeminal Neuralgia however my Neuro Oncologist believes it is “ice pick headaches”- yea they really are as ‘fun’ as they sound. A short sharp burst of strong pain in my head (I’m gonna say about a 7/10) freezes you to the spot and makes you want to shout “oucccchhh” and then within seconds it’s gone again. I sometimes get clusters of them all day, on the hour or half hour however then they can pass and I feel ok again for a few days or even weeks. They are unpredictable and I never know when they might strike. I generally have the attitude of “I’m gonna carry on anyways” but sometimes it feels a bit debilitating. They aren’t treatable as such because of the short nature so we’re just going to see how I go. Apparently it’s all quite typical of ‘this’ and surgery, so let’s see where the next part of this journey takes me. 

Sorry if this blog is a bit down in tone. I’m ok, just a bit occupied with all the non stop questions in my mind, but trying my utmost to just get on with it. 

Positive things to focus on:

• Family and friends- I love you all, you are all so important to me ❤️ every phone call, txt,  whatsapp, card, hugs etc- it means the world- thank you 
• Jamiroquai concert! My last concert pre surgery! I’m going to sing and dance like there is no tomorrow ❤️
• It’s CHRIISSSSSSSSSSSSSSSSSSSSSSSTTTTTTMAAAASSS, ok so not yet but it’s my most favourite time of year- bring on the films, being cozy and just general love and contentment ❤️ Being with all those I love is the most precious part to me ❤️
• Waking up every day ❤️ Having a chance to turn it all around no matter how crap the day before may have felt at times- I am forever grateful for this and as the legend that is Stephen Hawking said “where there is life, there is hope” ❤️ 

Just because xx

I’ll update here again when I know more. 

Love to all,

Gem Xx 

What Lies Ahead...and other reflections

So big massive summary time of where I am at with things. Today feels like a good day to update everyone for anyone that isn't sure.

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!

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

Can't say thank you enough guys! xx