April 2023 ...A Year On From Meso's Return
I wrote this and saved it.. hence I'm only publishing now. It was written in April 23)
"As I mentioned in the last blog, Paul's mesothelioma returned last year.
Thankfully our amazing oncologist Mary O'Brien caught it early via PETscan so they decided to operate AGAIN.. something that has rarely been done before.
Daunting yet reassuring that we could take some action.
The worst part was waiting.
We were told in March that something small had shown up.. but was most probably COVID related .. but then a biopsy was done over the summer and meso was confirmed.
One on the lymph, and one hidden under a rib.
Mary called to talk Paul through the plan.
We were standing on a Devon beach watching Cam be distracted by my Godson Archie.
I was smiling at Paul but crying my eyes out in my head. Poor, poor guy having to endure this AGAIN. After all the work he'd put in to get well again and recover from the surgery in 2018. No point in complaining that it wasn't fair.. as Paul always said at the time
"It is what it is, babe"
Paul was brilliant as always. Took the news on the chin and booked himself on an Egyptian kitesurfing safari with some mates at the beginning of Sep 22.
He loved being on a boat practising jumps. Didn't tell his pals so they wouldn't treat him differently. Made sense to do it because we weren't sure if he'd be able to kitesurf again. Everything depended on the surgery.
Carol Tan our brilliant surgeon actually hurt her fingers extracting those tumours.. it took much longer than she thought, but by gosh, are we grateful?!
Paul was in the hospital Sep 2022 for around 4 days.
Seeing those drains in again was enough to turn the stomach.. and he endured soo much pain.. but yet again Mr Glass-Half-Full said "At least this isn't as bad as last time!" To be honest he gibbered a lot of happy nonsense due to the drugs, which I think he might have enjoyed a little too much.
Mum kindly came down to help and a week before surgery and we had to finally explain everything to our 10 year old son.
I think Paul would tell you that was the WORST bit.
We rehearsed what would be said.
He didn't ask many questions.
He just processed...
He was really supportive of Paul and told him he would beat it again. Great cheerleader. (Great acting skills)
He hid his horror from his dad.
That night he cried himself silently to sleep.
I stroked his head then sat outside his room wondering how this was going to affect our boy going forward.
My heart broke for both boys in my house that night.
Cam came into hospital with me and played games and watched movies with his dad. He helped him as much as he could when he got home.
We smothered Cam in love (it's tricky because you can't truthfully reassure them)and talked about the surgery and treatment openly.
All seemed to be going too well but our son developed a gradual facial tick, which was really awful and obvious especially around Christmas..and only really went away over Easter this year. Mr Matthew his fantastic teacher monitored him closely.
However we received the best Christmas present ever from Mary when she said that no chemo was required.
That was a wonderful surprise as we'd been bracing ourselves for it.
We vowed to book skiing and have a fabulous time!
We threw ourselves into and all sorts of days out and theatre. It was all about having fun as a family.
I'm astounded that Paul has recovered so well.
He has 2 brand new scars on his front.. but yet again, he put in the work.. eating well and getting the steps in with the dog every day.
He built up the exercise gradually, but consistently. He drinks buckets of green tea, takes turkey tail and we lay off the red meat.
We managed to go skiing in Dec with friends and Paul's been on 3 ski trips this season.
Friends have been amazingly supportive.
He also rigged up his kitesurf gear in Egypt this April. I was ecstatic to see him jump again!!
In March we had a good scan. Felt so relieved and grateful.
We never expect to hear those words. I think a coping mechanism kicks in and you brace yourself for the worst each time.
Our lives are now forever carved into 3 or 6 month scan-dependent segments.
Cam is entering the shark's waters of 11+ exams this year but he's coping well. I'm doing more websites and hope to ramp up the work a bit more.
Paul is working away but keeping an eye on the wind for any possible kitesurfing opportunity to escape to the coast.
The house is complete and we've booked Kos for July. Poor Paul's mum had a fall just before Christmas but she's gone through physio and rehab and like her son, is on the mend again (must be genetic.. is bouncing back a "thing"?)
We do laugh about the speed of her chairlift!!
Erase Meso will be back on the map again soon. Because we're the primary volunteers, it had to take a back seat but we funded a big meso research piece https://www.erasemeso.org/mdig so it's exciting to see how that works out.
If you're looking after a loved one with cancer,
I hope each day brings a little more strength, determination, peace and hope your way.
But mostly I just wanted to say I'm so sorry you're having to go through this.
More from me around the next scan in Sep 23..