Lynda Williams on fighting for women's health and her own cancer battleby Hannah Sperber
What’s your health issue?
I was diagnosed with stage four pancreatic cancer on October 9, 2015 – terminal cancer that meant I was likely to die within a year. I accepted what that meant immediately and decided not to go chasing miracles.
But I felt a big, pressing concern that caused me to shed tears: how do I tell my five children? Telling them was the cruellest thing I’ve ever had to do. My third son came with me to tell the others. It was hardest telling my youngest son, who was 22, because his dad died of cancer when he was 12.
Sounds like a close family.
It’s become very close as a result of this. I have appreciated being able to have this time with my children, to have some holidays and go through the grieving process together. They’ve asked what my funeral playlist is going to be! Playlist. Dear, oh dear, there you go.
Have you connected with others going through the same thing?
I quickly found I was on my own when it came to accepting that I was dying. Most people still prefer to “battle” their cancer and I never entered the battle. I accepted it was a war that had already been lost.
In the oncology day-stay unit where I had my chemo, I didn’t relate to the positive, hearts, flowers, balloons, not giving up kind of ethos. I felt the concept of accepting that you are going to die was not acceptable there. It has been quite a lonely journey for me.
What was your early life like?
I was born in 1950 in Hastings. My sister is 16 months younger than me, and then eight and 11 years later my parents adopted two boys, my brothers.
I think I reacted to my conservative upbringing quite strongly. I remember biking home from high school thinking about how to get out of Hastings. I saw education as my way out. I did an arts degree and studied languages at Victoria University in the late 1960s, got married, and moved to Auckland. I was so lucky to live through the challenging time of the Vietnam War peace movement and Springbok Tour. It was a great time to be young and it really consolidated the idea that you could make the world a better place for other people.
When I started having children, I became interested in women’s health. I’d been shocked by the power our university doctor wielded over when and what contraception we could have. Then when I had my first child, in 1973, I was so appalled at what happened during the birth that I adopted my second child. And then when my third child was premature, it was a horrendous battle with the hospital in 1977 to be allowed to breastfeed her and touch her.
You chose to adopt your second child because of the trauma of your first birth?
Yes, my adopted brothers were Maori so we adopted a Maori boy for our second child. We stayed in contact with his 14-year-old birth mother and later his birth father and his parents. Open adoptions were considered faddish but later became the norm. I’ve always felt it takes too much energy to try and pretend things are not the way they are. It’s better that children know where they come from, and with the whole field of genetics taking off the way it is now it’s become even more important.
Although I’d given up breastfeeding my first baby 18 months prior to the adoption of our second son, I re-established breastfeeding. He was four weeks old when we brought him home and he would take to the breast. It only took a week or two for me to be aware that I was lactating again.
How did you get involved in women’s health advocacy?
I was involved in La Leche League, Playcentre, Parent Centre, childbirth education, and then Sandra Coney shoulder-tapped me to get involved in Women’s Health Action. I attended some of the sessions of the Cartwright Inquiry in 1987 and 1988 – a major event in the evolution of the health system in this country.
After that, I was part of the formation of the Auckland Women’s Health Council and the Maternity Services Consumer Council and I was still working for both when I got my diagnosis.
Women’s health advocacy has been my passion and I feel very lucky to have discovered it. When you’ve got a job that doesn’t feel like a job, you’re very fortunate.
Have you seen a shift for the better over that time?
In maternity, it’s been gratifying seeing evidence-based care emerge. Back when the home birth association was set up, maternity care was not evidence-based at all. Now we have scientific research about the hormonal side of birth, what breastfeeding does for a baby’s future wellbeing, and that has been really gratifying.
After the Cartwright Report [in 1988], women’s healthcare improved dramatically with the introduction of informed consent, ethics committees, and women not being used as teaching material the way they had been.
And since my diagnosis I’ve had to change my mind about so many things. It’s been a huge lesson for someone who never took drugs of any kind, to now be willing to take the most toxic drugs on the planet.
You’d think after 30 years working with the health system I’d know how to navigate it, but there’s so much that needs to be improved with cancer services. I was part of the movement to get continuity of care for birth and I’m now – frantically in the time I have left – trying to push for continuity of care when we’re facing our death. When you have a terminal diagnosis, you want the same doctor every time you have an appointment. To have those difficult conversations, you need to have established a relationship with your specialist. I’ve insisted I see the same oncologist nearly all the time – but everyone should have that. I think it’s a measure of how successful a society is when you look at how people give birth and how they die.
What are your children’s lives like?
I had two goals as a parent and I failed in both of them! I wanted my children to discover their work in the world: something they felt they were on Earth to do. And I’m not sure any of them have that sense of calling.
And I wanted them to find their own spiritual paths, because when I got involved in the women’s spirituality movement it gave me a sense of coming home. Yet they all delight in telling me they’re atheist and agnostic and don’t have a spiritual bone in their bodies.
You were married a long time.
For 22 years. Bill and I were both 19 when we got married. He has since remarried but we still get along and he was the one I called to say, “How am I going to tell the kids?”
Sounds like you changed a lot in those 22 years.
Yes, I grew into the women’s movement. I think it was one of the stresses in our relationship, especially my involvement in the women’s spirituality movement. I remember my mother saying how shocked and uncomfortable she was to see my husband having to iron his own shirts and cook a meal. Then, after about 15 years, I went back to using my maiden name. It was long before we separated – my mother-in-law was horrified. But I felt I’d always been Lynda Williams and everything else had just lain over the top.
How did you get into the women’s spirituality movement?
I went to Lloyd Geering’s day-long feminist critique of Christianity, based on work by his female students, and he gave me a book-list that blew my socks off. One of my friends and I determined we were going to get all the books off this list: bit by bit we’d put in orders at the bookshops and they’d take several months to arrive. And that was my goodbye to my Christian upbringing.
Then a couple of years later, I went to one of Lea Holford’s courses and became one of many women in the early 80s who went to Lea’s courses and found a way back to the feminine.
What’s been hardest?
There are two things I do feel sad about. The most important one is that I’m not going to get to see my grandchildren grow up.
The other more personal one is that I didn’t have enough time living by myself. My youngest son moved out just after his 20th birthday and I’ve loved every minute of my independence, the sense of freedom, coming and going and not telling anyone, and I expected many years of living by myself! I’m not going to get it now.
Forty years, eight months, three weeks and two days – those are the years of mothering my children, from the birth of my eldest son in April 1973 to when my youngest son moved out in December 2013.
What was it like raising a daughter alongside work in the women’s movement?
My daughter’s teenage years were hard because of my marriage breakup. I’d fallen in love with someone else, so there were several very hard years when mum was a bitch and dad couldn’t do any wrong. But I was at the birth of both my daughter’s babies. She wanted me there. And she’s struggling now a great deal. Two of my kids have had counselling about my diagnosis. She doesn’t like to see me suffering physically.
What advice would you give your young self?
Choose your battles. A hard lesson for me to learn. There was a time in my life when I had insomnia and I spent many years fretting and worrying and getting more and more uptight about the huge day I had tomorrow and how if I didn’t get back to sleep I wouldn’t be able to cope. Gradually I learned to accept that I was awake: to read, or make myself a cup of tea; life would go on and I would cope.
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