Year 3 has in many ways been the hardest but also most rewarding year of this journey so far. To summarise 3 years in 3 bullet points:
- Year 1 you’re going 100mph and running on adrenaline
- Year 2 you’re just grateful to still be alive
- Year 3 you’re stuck in limbo… I’m still here, now what, how far do I go, how far can I go?
Back at some point in spring of 2020, when I started accepting what was happening in my life, I asked my wife a really difficult question and wanted a brutally honest answer.
My wife is a GP, a bloody good GP – patients, colleagues, family and friends genuinely trust her judgement, she thinks calmly under pressure and she’s generally the first person people go to for advice. The point is, she’s a very good doctor!
So when I asked her, “babe how long do you think I have to live?”, I’m not really sure what I was expecting back as an answer! But I did follow that up with, “what sort of timelines do you think we are working towards?” I know it wasn’t a very fair question given I wasn’t having a biopsy and there was no official diagnosis, but more a suspected diagnosis of a diffuse glioma. But anyone in my position will tell you that sometimes you need anything to hang onto and I needed a rough number.
Her honest answer was ‘I really don’t know babe’ – but with the limited knowledge and information we had and looking at studies, she said ‘I think we can hope for at least 10 years without any chemo or intervention – if we can do 10 years then that would be amazing.’
So we’re nearly 1/3 of the 10 years – and no chemo, no intervention, no nothing. I’m thinking I can actually do the 10 years?! And more?! Maybe I can see the girls get married, maybe even see their kids… this is where your thoughts can start racing away from you:
“You live in hope, but it’s the hope that kills you” – I’m not sure if that phrase exists, but I’m claiming it! It does sound a bit gloomy but it sums up my continuous battle between hope and fear.
When the tumour turned up, my girls were 5 and 3, as I write this, they’re 8 and 6 but it feels like we’ve lived more than 10 years within these last 3 years… not sure if that made any sense! What I’m trying to say is I’m beginning to look at time differently. ‘Time’ not as a measure of days/months/years but more by experiences. When you really think about it, it’s the experiences, the laughter, the tears, the moments that truly stay with us. This is not a great example but Avaana started walking around her 1st birthday, I can’t tell you exactly when, but the date isn’t what stayed with me – what I remember are those first steps she took and her smiling little face and how happy that made me feel… the days and numbers are for history, the experiences and memories are for me.
Despite the challenge you’re facing, nothing can take away HOW you choose to deal with the problem. That’s what defines who we are. And personally speaking that is all I want – I want my girls to know that daddy was a kind, good guy. I want my friends to miss me because I was a good friend and I brought something to their lives.
3 years in and I’m still trying to find my balance – I don’t want to become so confident that I get destroyed if something were to go wrong…equally I don’t want to stay fearful where I am constantly on edge waiting for bad news. Either way I’m full of gratitude for this life. Thank you God for your love, kindness and provision 🙏🏾 (and just like Samson, I shall show my dedication by never cutting my hair 😜).
This past year has been full of experiences – good and bad! I will be sharing some of these with you over the coming months through these blogs – there are some tough reads, but as always they will be totally honest and open.
I’m going to end with this (I was sent this recently and it really resonated with me):
“Be the reason why people believe in pure hearts, good vibes and kind souls”
Love, Sam x
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