Health activist Lynda Williams MNZM at home in Swanson. Photo / Doug Sherring
Health activist Lynda Williams MNZM at home in Swanson. Photo / Doug Sherring
Activist Lynda Williams has fought the health system for a better deal for 20 years. Now she is at its mercy - but her terminal cancer diagnosis has come with its own blessings of honesty, bravery and the gift of time.
"I don't think there is anything that can prepare you for a terminal diagnosis.
"My experience as a health advocate in fact made no difference at all to how I received my diagnosis of stage four pancreatic cancer 15 months ago. It was unlike anything else I've ever experienced and a real shock for both my family and myself.
"You know, my dad has just turned 90 and my mum is 87. I'd just always assumed I'd live to a ripe old age too, and now I have to readjust my world view.
"I've lived in the same area of West Auckland for decades. For someone like me who is so interested in how people can engage with the health system, how they can receive health care with dignity, in retrospect it feels like a huge gap that I haven't been involved in the development or provision of hospice services in West Auckland.
"Now, as a patient, I find myself cared for by this organisation with a broad range of services - far broader than I knew existed, and indeed broader that what my oncologist understood as 'hospice services'. I'm receiving weekly art therapy and occasional massage.
"There's no easy answer of course. But, the fact is the doctor you've been seeing often may not have the answers - everyone is different in how they respond to the news, the choices that may or not be available, which makes it difficult for the health professionals to predict and react to.
"My oncologist was quite puzzled by my choice to have art therapy classes - he didn't understand what I was doing and even thought it odd. Not many people really understand what hospice services are.
"Over the decades I've lived in West Auckland and I've seen the Hospice West Auckland building, but it never registered. It changes dramatically once you're diagnosed of course.
"Because I face challenges head-on and openly and collect as much info as possible, I have been quite outspoken about my diagnosis and wish to acknowledge it. However, some people find it very hard, and seem to much prefer a less confrontational attitude. People want you to remain hopeful - hopeful for a remedy or a cure - rather than realistic.
"I think the best thing anyone can do when a family member or friend receives a terminal diagnosis is just being supportive. Questioning decisions is not helpful. It's better to have conversations how they came to their choices and then support them in those choices.
"Stop the unsolicited advice and support the person. Be a supportive presence. One of my oldest friends and husband visited and they were the first people outside my immediate family I told. They sat with me, mostly in silence, and you know what, silences are fine. That kind of support is invaluable and unfortunately very rare.
Lynda Williams with Governor General Dame Patsy Reddy at her investiture ceremony last month. Photo / Sourced via Governor General's Facebook
"I've brought my children up to face issues and not be afraid to seek help. There's nothing weak about it if you need counselling - my kids have been brought up with that attitude. That is sometimes not enough.
"The diagnosis means you can't shove it under the carpet in the same way. I've really appreciated the fact I've been able to re-write my will and then discuss with my kids over lunch, talking together about what it all meant.
"They then raised my funeral, and we were able to talk about what my wishes and plans were, what my playlist would be, where my ashes should be buried and so on.
"All of this helps my family prepare and is such precious time shared. It seems to me the art of dying can be something you learn, and Hospice West Auckland has helped me and family begin to learn it."
Hospice
While some people's thoughts gravitate to the stereotype of an elderly person passing away in a set location, hospice services are in fact much broader.
A philosophy rather than a place, at Hospice West Auckland palliative care is matched to the patient and families.
Eighty per cent of Hospice West Auckland's care is delivered in the patient's home, and services include bereavement and grief counselling, group therapy, art therapy, spiritual care and social work assistance in addition to 24-hour care in the Kowhai Suite.
Hospice West Auckland serves the greater West Auckland region, stretching from New Lynn out to the West Coast and up to South Head and Helensville.
Celebrating its 30th anniversary in 2017, HWA provides holistic care to patients, whanau and carers at no-charge. Services include home health and social care visits; specialist palliative care; therapeutic massage; art therapy; grief counselling and bereavement and spiritual support.
Each year HWA must raise more than $6.5 million to ensure it can continue to provide the very best of care in death, dying, grief and loss.
• For more information about services and how you can support Hospice West Auckland's work see hwa.org.nz.
