Dying in the Margins: Joost ten Wolde on his wife Stacey O’Brien’s end of life experiences

Published on: Author: samquinn 1 Comment
Stacey sits on her bed looking towards the camera.
Dying in the Margins – Photograph of Joost ten Wolde by Margaret Mitchell (©Margaret Mitchell)

This blog is written by Joost ten Wolde

My wife, Stacey O’Brien, had a TP53 genetic fault; a condition which increases a person’s risk of getting cancer by almost 100%. This gene is linked to many different kinds of cancers. Stacey had cancer nine times in total: sarcoma in the leg, breast, lymph nodes, back, heart, liver, and brain.

Tragically, Stacey passed away this March after a month in the Marie Curie hospice, aged 39.

When my wife had her first cancer, an osteosarcoma in her leg, she was working for a cosmetics company that specialised in beauty products for people with cancer.

She underwent platinum chemotherapy, the most potent available, and still managed to work afterwards.

When she couldn’t work for a few months following brutal chemotherapy, she was dismissed because she was on a zero-hour contract.

She had to make a choice: keep working to earn money, or undergo chemotherapy and have no money left for gas or heating, as in the winter of 2009, the coldest of the 21st century.

She chose chemotherapy and slept in a house so cold that when she awoke, her glass of water was frozen on her bedside table.

She didn’t complain; she kept trying to stay alive.

How is it possible in the UK, that people like Stacey are faced with such situations?

Stacey lived in a high-rise one-bedroom flat without any outside space.

In her last few years, she fought for a new house with a garden—to ‘live out her days’, as she said, and so that her mum could stay over.

But it took years for the housing association to relocate Stacey. When she got a new flat, she was overjoyed, but tragically it was too late.

She entered our new flat once, beaming from ear to ear, so proud of her new home. The second time she wanted to show her mum. Tragically, as she stepped out of the car, she collapsed in front of her new home. She was the proudest woman in the world, and her dream ended on the doorstep. Her dream, after ten years of battling cancer, was a simple two-room flat—that was all she wanted.

But instead, she died five weeks later in the Marie Curie hospice.

This is the UK, one of the richest countries in the world, yet this can happen.

Why are terminally ill people not assisted more promptly by housing associations when they need it, to have just a few happy, worry-free final years of life?


The University of Glasgow and Marie Curie are calling for Local Government to commit to fast-tracking housing maintenance, adaptations, and moving requests for terminally ill people using the BASRiS form.

Joost was served an eviction notice just 2 weeks after Stacey died, which arrived before her funeral. The University of Glasgow and Marie Curie are therefore also calling for Local Government and Housing Associations to extend eviction notices for bereaved co-inhabitants living in social housing for 6 months after the death.

One response to Dying in the Margins: Joost ten Wolde on his wife Stacey O’Brien’s end of life experiences Comments (RSS) Comments (RSS)

  1. Joost, firstly my condolences. Your wife sounds like a very special lady indeed. Secondly, what a disgrace that you were served an eviction notice from the housing association. I hope this did not happen and you were able to remain in your home. Thank you for sharing your story. I hope you had support during those terrible times and I agree, how can this be happening in the UK, that people have to choose between treatment and earning money.
    I dont know if you still live in Scotland but feel free to reach out to Nederlanders in Schotland pagina on facebook and maybe we can get in touch with eachother for a chat. Sterkte!

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