The weeks leading up to a scan and its results are pretty grim. You don't really sleep that well, the palpitations start and the knots in the stomach get increasingly pronounced..
Everything that happens (including the wonderful things) feel tinged with that sinking sadness that the scan might unearth something nasty/Paul's life is in the balance..
We hug that bit closer and distract one another from what's happening. It's a painful wait for results every 6 months..and it's not me who might perish, so God knows how he must feel. I know I feel utterly, utterly useless..
Basically every 6 months you get a rotten reality-check that life is actually very fragile and a scan result can change everything.
I get so afraid for our son Cam as he has such a beautiful relationship with his dad... they are always mucking about together (literally.. the washing machine always goes on if they've gone out)
and the LAUGHS.. such infectious, carefree giggles!
This really isn't meant to sound boastful but we have such a lovely little contented & happy family. We all get on brilliantly and I LOVE hanging out with my boys.
Yesterday when I saw the phone flashing with Prof Mary O'Brien (- our amazing oncologist), I think my heartrate hit the roof. She wasn't meant to call until 4.30 and it was midday. She rarely calls early so my paranoia that something was wrong took an instant hold..
Paul took the call and rather than give me the immediate thumbs up, he took longer and disappeared into the kitchen.
Oddly my entire body started shaking as i feared the worst.* When he got off the phone to say there was still no evidence of disease.. just fibrosis.. i jumped into his arms for a cuddle.
We don't really need to say anything. We're together, he's here and he's healthy.
We are so thankful and grateful..it could as easily have been a "sliding doors" moment and a very different Christmas..
Pure relief and joy.
"..And BREATHE..!" as one of my friends Andi texted..
Paul is always amazingly brave.
He doesn't grumble. He makes the most of every day he is alive. He's an exciting person to be around.. charismatic and funny.. and despite the 6 rounds of 3 types of chemo he endured, he's still sharp as a knife. He has spent years building his body and mind back up again after the ravages of chemo.
He never wants to worry anyone..but I knew he was nervous about this scan. His left lung (the good one) has been sore, and he's in pain every single day. Every twinge takes on a sinister meaning on the approach to a scan..but thank God he is okay.
My prayers of "Can I keep him?" were answered.
We feel extremely fortunate and cognisant that others have not had the same experience and suffered great loss/sorrow due to mesothelioma.
We had a great summer in 2020. Erase Meso (& our sponsors RWK) hosted Back to the Future Drive in, a covid, family friendly event. (Thank you to Scott Horsfield for donating the cinema!)Such a laugh.. and a real DeLorean came along for the ride!
The other great thing is that this year, despite covid, there are lots of promising new developments in meso. Opdivo/nivolumab immunotherapy has been approved by the NHS..Viruses are being weaponised.. and we even have gold nanotubes being developed to kill off the cancer cells. It's all very hopeful.. we just wish there was more funding!
We spent sunny days between London and Sussex and Dorset between July and August. Thankfully Paul's mum didn't get too fed up of us using her home as a hotel and our kind friends donated their Poole Harbour apartment to us.
Sadly I've not seen my mum or pops since last Christmas. The day we were driving up there we got 40 miles north of Blackpool only to hear Nicola Sturgeon announce Aberdeen was closed due to Covid.. what were the chances!!!??? Thoroughly deflated, we turned the car around to point south again. Can't wait to see them at Christmas. We'll have a lot to celebrate.
On another note, Cam passed his windsurfing Level 1 qualification and we did a lot of sightseeing, paddle-boarding and cycling on the coast!
Paul and I have kept our fitness levels up but I can't say the same for the wine supply levels..
Paul's dream of getting the meso-community together is actually becoming a reality.
I've done the branding and website for ActionMeso
and we have a superb working group including Mavis Nye, Hasag, GGF, BTOG, IOSH, lots of support groups and Meso UK. Sandstar Comms have been superb too.
It's AMAZING to work together!!
Feels really collegiate and meaningful.
We are seriously excited about raising awareness of asbestos and mesothelioma.. and the aim is to inform every single person in the UK about asbestos cancer (Aiming high.. why not!?) #actionmeso
We launch next week.
Always said we'd try to give back and raise awareness ..and there's a big pack of us now..so here goes..!!
IF you're reading this and fancy signing up, please go to https://www.actionmeso.org/
PS - a silly video of us dancing/rugby tackling last night!! It's not every day you get such happy news ;-) Super-thankful indeed..
*I'm disappointed that I didn't react better or more bravely to what potentially could have been bad news. I've applied for counselling to give me coping strategies so I can be strong for Paul and deal with everything in a much more positive, pro-active way. Honestly, I've spent the last 3 years being anxious and it can't go on.. I need to be better equipped to help Paul. I've found physical exercise really helps too.