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  • Writer's pictureJill


I went to church with Cam yesterday and pondered a lot over life, musing with The Big Guy over whether he could please see to it that the disease has not spread.

Our church has been extremely supportive, even though I'm rarely there these days.

Paul had his CT scan last week and we get the results tomorrow.

It's weird. I feel a bit sick every time I think about it.

If it has spread, we're a bit stumped.

This really is a life or death situation and the last time we were here was after the PETscan in Nov '17 when he was first diagnosed.

We've been keeping busy today and concentrating on fact we only have a tent for our camping weekend THIS weekend .. and trying to get organised!

Went to the common to do a practise run putting the new tent up the other day and I'm convinced the passers-by thought we were staying there..

Paul doesn't seem to be too worried about it. In fact, he's pretty relaxed. Although I suspect he is less relaxed than he says he is as he's keen to do something fun together tomorrow.

He is currently laughing with Cam in his shower talking about farts, turbo-bottoms and making silly faces. They have done their reading together, and conquering words I never thought Cam could (with Daddy's help)

Paul has been going to physio every week to try and build up his core. He's sore because she is massaging his skin tissue below and he's doing pilates according to her instructions with 2 cans of beans for weights.

All our friends have been wonderful.. but equally I was at a PizzUP event last week with some of my previous school friends. I loved catching up with my gang but I found it really difficult having to update old acquaintances on Paul's progress. Sometimes I just said that I didn't want to talk about it but as much as I can paint a positive (and by Gosh have we had the best of care and are so incredibly grateful) I feel like I'm being drained. They can't win, of course, as they are only being caring by enquiring after Paul.. and kind. It's just that sometimes I'd like to just forget and pretend this isn't really happening. Sometimes I don't want to be asked.

Sometimes I feel like I'm in this weird numb world and that people are moving all around me like aliens.

I also often wonder if we've done something to deserve this.

I have a google alert on every day which tells me about the cures, especially advances through immunotherapy, that are being developed every day.

It's a race against time for us.

I feel like crying a lot, and even envision his funeral at my lowest moments. The prospect of losing Paul absolutely terrifies me. He is such an incredible guy with a funny and beautiful spirit. He never complains, and is too wonderful to lose.

Since he's been off and around the house, it's just been lovely (that is, apart from when he doesn't take turn putting the bins out ha ha) We are extraordinarily fortunate to have had this last 6 months when so many meso-warriors don't get the opportunity.. Have to be grateful every day.

Please God don't let the meso have spread and perhaps grant us a little more time on your earth together.


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