Tick tock tick tock.

My latest scan from Tuesday 27th Feb has shown aggressive tumour progression again. It is now in my interior right front temporal lobe which means I may start to haveweakness on my left side leading to movement loss and more vision impairment.

It also means they have given me just 2 to 3 months.

It has only been 2 days since I got this news and if I’m honest, it’s not sunk in. I’m just in shock, my emotions stunned into mainly just staring into space.

I’ve been told that no treatment will have any impact and therefore they’ve stopped chemo and said there’s nothing else. For once, in this whole journey, I  have, for now at least accepted what they’re telling me.

But it means, for the first time, Hope has been fully distinguished and hope enables you to live – not life or death live, but living in normality rather than a sluggish ‘what’s the point’ clock watching living. It feels like thoughts of death and dying have engulfed me, holding my body in a tight embrace especially in the darkness at 3am.

I’m struggling hard to resist the temptation of just staying in bed, drawing the curtains, putting the duvet over my head and just waiting until it’s all over. But what a waste that would be. And it’s not me. I can’t let Loli’s memories be of someone that I’m not.

So I had a word with myself and I’ve asked friends and others to think of experiences I can have with my beautiful girl in the next few months, from the smallest things to super special outlandlish ideas, that we can do to bring joy, happiness and memories whilst I’m able. Sadly I can’t fly because of the pressure apparently which is gutting as the thing that makes me the happiest is exploring new places especially in the sun!

But there are trains, boats and automobiles that ensure adventures can still happen.

I will also be doing all the memory boxes and video messages for Loli to have when the time is right.

If there are any suggestions for memory making or anything else then I’d love them to be shared.

I may have lost hope in treatment options but I’m still hopeful we can make this time super special and full of joy. I refuse to let our llives be ruled by that clock other than to remind me that time is so precious and to savour every minute.