1 Jul 2016

Long-time health activist Lynda Williams

From Nine To Noon, 10:10 am on 1 July 2016

Lynda Williams role as a health activist began after her experiences as a young, single woman who had to fight to get contraceptives and later with challenges to the medical system when she had her first baby.

Lynda Williams

Now Lynda's own health that is in sharp focus – she has been diagnosed with pancreatic cancer. It's not a matter of fighting the disease, she says, it is nearly always fatal, but ensuring that she makes the most of what time she has left.

Lynda Williams is a former childbirth educator who has been an ouspoken advocate for womens health - her activism led to her appointment as patient advocate at Auckland's National Women's hospital in the wake of the Cartwright inquiry into cervical cancer screening. She has been a key figure in the group Women's Health Action and a tireless attendee at Auckland's District Health Board meetings. But it's not just bureacracies that Lynda Williams has taken on, She has also been critical of lobbyists of Pharmac, who have campaigned for the funding of cancer drugs like Herceptin and Keytruda, saying those efforts should be directed at pharmaceutical companies which put high prices on the drugs.

An extract from the interview

Kathryn Ryan: We’re humans, we know that we’re going to die, but it is not until receiving the certainty of such a diagnosis as yours that we really focus on it. Was has been your experience of facing it as a reality?

Lynda Williams: Well, it didn’t take me very long at all, actually. If I had been diagnosed with a different  form of cancer I would have a very different response I’m sure. But although I didn’t know too much about pancreatic cancer I knew that the world that I had been living in had changed dramatically and my survival was not going to be for very long. My first thoughts were not for me once I knew that I had pancreatic cancer, it was how am I going to tell my five children? The few tears I’ve shed over this journey, over the last eight months, were shed for my children.

Kathryn Ryan: The hardest thing is their pain.

Lynda Williams: Yes.

Kathryn Ryan: We talk often about the phases people go through with a diagnosis about this – the classic cycle of grief and denial and anger and bargaining. Did you go much straight to the point of accepting this. As you say, your focus as it is so often is with mothers, with parents, is how is this going to affect my children?

Lynda Williams: The diagnosis was such a shock that I think I shelved it temporarily while I put on my mother hat and worked out with my ex-husband what was the best way to talk to my children about what had just happened. I accepted the diagnosis immediately and it was very clear to me that there was no point in trying to deny it or pretend that it wasn’t happening. What I wanted to do was live while I was dying. I did not want to change anything in that moment about the way I was living. So for those next few months I didn’t change anything in terms of my work, my family and the various other things I’m involved in.

Kathryn Ryan: Everyone’s experience of a terminal experience is very different, clearly. But one thing you do hear and perhaps you hear it often from parents and grandparents is appreciation of having time. I know it doesn’t feel long enough, but time to get everybody where they need to be – has that been another part of the experience for you?

Lynda Williams: Yes. That didn’t happen till the beginning of this year. Several months later I realised it was a gift, actually, being given notice of the fact that I was going to die and my life expectancy was now measured in months, not years. And that I was going to be around to help my friends and family come to terms with what lay ahead. We could plan together how best to use the time and to go through the grieving process and the saying goodbye. To me that has been a very precious gift and something that... If this is the way it had to be, that I was going to die very shortly – I would rather do it this way than be taken out suddenly in a car crash or something like that, leaving behind traumatised friends and family. This, to me, is a very important time.