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