Written by Rob Clarke, Jo’s husband ...
So, I find myself where I knew one day I would...
Jo - my wife - died on the 23rd September 2018. She was with me. With her parents. With her friends.
I promised her I would finish her blog - she found great comfort in sharing her story with you, her readers.
So, I have published all her draft posts - of which there were many. Forgive the random or incomplete nature of some of them - but they are as I found them!
But I also wanted to write one final post - in her style (matter-of-fact. Direct).
So, what happened?
As you know, her disease had spread to her pleura, by way of pleural effusion. Also she had pericardial effusion. Both of these were malignant.
Towards the end, Jo's skin mets had become very tight and sore. They were literally squeezing her and it was very uncomfortable.
A week before Jo died, it was clear to me that she was not right.
She had lost the ability to swallow food, without choking horribly on it. She was also very, very tired and in bed most of the day.
Jo left the house in an ambulance and, on a gut or instinctive level, I knew she wouldn't come back.
When she got to A&E, doctors were trying to work out what was what. But they kept mentioning "End of life care", "wishes", "DNRs".
The week was tough.
Jo couldn't swallow liquid. So she was starving to death. I forced her to take a feeding tube - an unpleasant process. The general view was chemo was needed urgently but she was too weak for it. She was on oxygen too as she wasn't getting enough saturation.
On the Saturday I arrived early as Jo sent me a message by text. This was 6 days after she'd be admitted.
"Oxygen 65%. Vety illll"
I rushed in, alarmed by her spelling, amusingly, knowing it would be bad if that was the message!
I was told to make the call. It was touch and go.
I summoned friends and family to sit in vigil with her.
The doctor showed me her scans - from a week or so ago, and now. The lungs had gone from slightly milky to white on one side. This was pleural spread.
On the other lung, she had an aspiration pneumonia.
The trouble swallowing had been attributed to a metastatic fluid build up in her lymphatic system around her throat. It was choking her.
A waking hell followed.
Jo was conscious on the Saturday, but on a syringe driver, maximum oxygen and was confused, muddling her words and very restless. She was clearly suffering.
I slept by her overnight. The consultant shook me awake in the small hours of the Sunday and said "it's time". She was holding Jo in her arms, with her breathing slow and rattling terribly, saying "there, there poppet. There there..."
But then Jo kept going.
On the Sunday, she didn't really re-appear. She was staring into oblivion, rattling away.
The medical team were reducing her oxygen as it was acting as life support.
By 7pm, they'd turned it off. Jo took two more breaths, and died in my arms.
She finally looked at peace. Her mum and step-Dad were there when she died, and was shortly joined by her father, brothers and sister and best friends.
It was over.
We laid Jo to rest at Clayton Wood natural burial ground on 17th October 2018.
She wanted to be there. And it was a lovely day, despite the reasons why.
I wanted to share this with you, in her memory. Despite the horror of it all, there is a key takeaway for me - and I hope for you.
Jo Jo's journey ended in suffering and tragedy. BUT. And this is critical.... Not everyone on this path ends up with this ending. Don't lose hope - all of you fighting this terrible disease. Fight. Be strong. Celebrate your lives. Beat it.
https://joanna-clarke.muchloved.com/
Robert Clarke.
