Search
  • Jill

Remission Impossible


So yesterday was a great example of riding the meso-coaster.

Woke up feeling a bit sick. It's CT scan results day. Blimey.. but not until 4pm.

We try to distract ourselves with prospect of camping this weekend and buy some camping stuff, but it's weighing on both our minds. Today is potentially life or death for Paul.

My lovely friend (Super)Gen has our son after school. Her son misses swimming so she can have him. Paul and I are both nervous, but we don't talk about it. To be honest, I've talked about it with my counsellor for 45 mins this am and cried my eyes out. I've been trying to come up with what we will do if we're told the mesothelioma has spread to other parts of the body.. I still don't really have a concrete plan.

Personally, I am worried about how any bad news will affect my husband who has endured the last 6 months' treatment hell. It will all have been in vain.. and utterly devastating..and the main strength he has is his incredible mental positivity and drive.

We arrive at 5 to 4pm. Mary our oncologist is never late. The woman is a beacon of efficiency. And in the past when we've had to get results she's ushered us in quickly and said "it's good" so we've not had to wait or suffer any longer than necessary.

It's now 4.22pm (22 mins late) and my heart is pounding in my chest. My half drunk coffee is shaking in my hand and we're both privately thinking she's late because it's bad news and she's going over the scan to figure out what we're going to do.. I'm thinking the worst. When she comes to usher us in, dynamite propels us off our seats and into her room.

She hasn't seen the results but opens the envelope in front of her, scans the summary and said "Good. Nothing new."



That feeling of sheer cold sweat, numbness and nausea is replaced with crying tears of joy. Paul looks white and can't seem to believe it. Mary looks happy and says Paul has done really well ... PETScan in 3 months. (that will check entire body, including bones and brain)

I ask her if he's in remission and she says yes and starts talking about the checks going from 3 months to 6 months and then years of scans..

Just talking about "years" in the meso world is something you always hope to hear but never dare.

Mesothelioma is so freaking unpredictable and you can't take anything even like remission for granted.

I had to keep asking Paul if I could tell people he's in remission, because I almost don't believe it, let alone jinks it!?

Sit in waiting room for Paul's prescription drugs but mentally I've flown out the door screaming. I go to the loo and get on the floor sobbing thanks to God.

We have to wait for more drugs before leaving the centre. We can't celebrate or even talk out of respect to those potentially awaiting their fate with cancer in the waiting room. Feel almost guilty to feel such joy, and don't say a word. I'm just gripping onto Paul..

Call mum & Grahame from the car park and they're so overjoyed they even get through 2 bottles of prosecco that night (mum rarely drinks, ha ha!)

Paul has a well deserved glass of wine at SuperGen's (she's been looking after Cam) and even a celebration fish and chips for tea!

Praise and thank God. I'm so grateful to Mary (oncologist) & Loic (surgeon) for the amazing care Paul has been given. Also Gemma Harris, physiotherapist who believes in Paul.

We are so grateful, thankful and blessed.

Tomorrow is a new day. One that won't wake up with a feeling of dread or worry.

Like Paul said, he's still suffering from cancer treatment rather than the cancer now. It will be 6-12 months to escape the toxins of chemo and recover from surgery. He is in pain every day, and that does not go away despite the "remission" label.

He is still covered in irritating sores and suffers terribly from fatigue.

However, he never complains.

He even laughs a lot.

He inspires me every day and is treating getting better like a job.

It's still a long road and no doubt bumpy times ahead. I'd love to think we've won this battle but the war with Mesothelioma continues. I know from everything I've read that meso doesn't stay away.., and I feel utterly sick about the many sufferers out there who are battling this nasty brute of a cancer.. but for now, bye bye mesothelioma! We're off to have a good summer. Please don't come back soon xx

PS - since I wrote all this promising news about Nivolumab has come out..

https://survivingmesothelioma.com/nivolumab-a-rising-star-for-malignant-mesothelioma-treatment/

These 2 drugs look promising too

https://www.asbestos.com/news/2018/06/20/tremelimumab-imfinzi-effective-mesothelioma/

All we need is hope and we can keep up the fight.

Thanks to all the amazing staff at Parkside Cancer Centre, our amazing oncologist Mary o'Brien and surgeon Loic Lang-Lazdunski for your life saving and pro-longing efforts.

Thanks to Carol Tan for discovering it early...she double checked a biopsy result that saved his life.

Our care has been outstanding, and we cannot thank you all enough.



16 views
  • erase meso linkedin
  • Facebook
  • Twitter
  • erase meso youtube
  • Instagram

2019. meso-carers blog

Please see disclaimer