Monthly Archives: November 2016

Empower people with cancer by talking about dying

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By Tony Bonser

“There’s nothing more we can do for you. Go home and get palliative care.” That’s probably not the best way to tell someone that the treatment isn’t working, but that’s how one consultant chose to inform our son, Neil, aged 35, that he wasn’t advocating any more chemotherapy for his sarcoma. Not only was it untrue – treatment could have done a great deal to improve his quality of life, but it also assumed Neil understood the term “palliative”. This led to him refusing to seek help which would have led to much better pain management.

Nobody told us that our son was dying – not explicitly anyway. We didn’t hear the truth behind the euphemisms because we were in denial. But when he was in hospital and a nurse asked him what he wanted, his reply, that Neil wanted to go home, enabled him to die where he wanted, in his own flat, with his family and his prized vinyls and books around him. Our last memory is of a good death. That is immeasurably important to us.

Family---Sam's-Graduation

Neil Bonser (left) pictured with his family at his sister’s graduation.

Neil was given the chance to say what he wanted very near the end of his life. When is the right time? Whenever the person is ready to discuss it. I really hope we can encourage a society where such conversations are seen as natural and healthy.

If they have such conversations, doctors will sometimes find that the right thing to do is nothing. My wife Dorothy used to take Tess, a woman with terminal cancer, to day-care. Tess had a wonderful relationship with her consultant, so when he told her the cancer was spreading and offered her surgery, she knew him well enough to see that he thought she might not survive it. He also suggested another option: a change in medication. “It won’t prolong your life,” he told her, “but it might improve the quality of it. It’s your choice.”

She chose the medication and lived to enjoy a two-week visit from her son from New Zealand, going shopping and taking him for meals at her favourite restaurant.

Another acquaintance with terminal cancer was very relieved when I suggested that he had the right to refuse another course of chemotherapy which his consultant recommended. The horrendous side-effects disappeared and he was able to enjoy most of his last few months.

Sometimes treatment will be a good option in the later stages of cancer, sometimes it will not. For me, the issue is about empowerment. It’s about more than persuading professionals to be patient-centred. It’s about professionals giving patients and family/carers the knowledge to make their own decisions and the power to involve themselves in meaningful discussions. It’s accepting that a good death can be a success. Such empowerment leads not only to a better death, but to good memories, which can help the path through bereavement enormously.

Tony Bonser’s son Neil died in 2009. Since then Tony has become a writer and speaker on end of life issues, a trustee of the National Council for Palliative Care and a local champion for the Dying Matters coalition in the UK.

 

All for one, and one for all! Patient power at ESMO 16

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

I had no preconceived idea of what ESMO 16 would be like, I applied with an open mind. How would it differ to other conferences in terms of the patient advocacy track would be the litmus test for me as a patient but also an advocate.

The Patient Track at ESMO made it feel I had a right to attend the conference – funny considering I am the one with the disease, the whole conference was based on!! But it has felt that way in the past, like you are being allowed to watch – this was different. This was not just for the medics, what we as a group had to say was just as important and relevant as anything that was revealed at the scientific presentation sessions. The topics covered were wide ranging and engaging, they ran not in parallel with the scientific sessions, but were given proper respect within the running order and it showed.

There was overflow needed for most Patient Track sessions, and those that were attending to listen were not just Patient Advocates, but the Oncologists, the Researchers, and the Pharma representatives. That’s because what we have to say is important and well informed – this is not our job it is our lives, so what could be more important to us?

Often the general public don’t understand the complexities of difference in cancer until you get one. It’s not a topic one reads up on for fun, most only keep up if they are personally connected. Also, all cancers are not created equal – it can become all too apparent that maybe you didn’t get the one with the most support or media air time or the most funding attached to researching it. But at the ESMO patient’s track this year I didn’t feel any of that. I felt instead part of a movement, a revolution of sorts that brought us all together bound by the one thing we have in common: a deep rooted desire to achieve the best for patients no matter what type of cancer they have. We are all in the same boat, there was no paddling your own canoe at ESMO.

“I felt part of a movement – a revolution of sorts”

Did I learn anything from my experience? YES. I am more confident in my connection now to Europe in my approach to my advocacy: I can reach out to many different branches of cancer communities, and advocacy support networks across the continent, and get help and information that’s still relevant to my community. We can help influence change that benefits patients wherever they live. Together, in solidarity we can achieve much more, we can work for equality of access and support for all, regardless of our cancer type or geographical location, we don’t leave anyone behind it’s a sort of unwritten rule, we go back to pick them up and carry them with us, all for one and one for all.

Kay Curtin also blogs at https://irishmelanomapatients.wordpress.com/