I don't remember making specific promises to Louise during her illness. I was always honest with her and she would ask for my opinion on medical things. I know she trusted me to care for her, and that I would be there for her when she needed me.
I've learnt how strong the human spirit is. I've worked with families in terrible situations that none of us would ever wish to experience and what amazes me is how they find the strength to go on, to enjoy life again, to laugh. So many times I have heard people say that if they had known what was going to happen to them (lose a child, get terminal cancer etc), they would have thought they would never cope with it ... but they do. When you have to get on with life and the really tough times, you do find a way.
My work has taught me to take each day as it comes. None of us knows what is around the corner. And also to value and be grateful for what we do have.
I think attitudes to illness have changed, not only to cancer. People want more information, to be completely informed about the options available and to have opportunities to take some control themselves. All the advances and successes in medicine, though, have also created some unrealistic expectations - that everything can be defeated through treatment or a positive attitude. That is not the case. If being strong and positive could cure people, I know plenty of wonderful children and adults who would still be alive.
It is hard sometimes to accept the randomness of cancer.
What I think can be very unhelpful is the idea that something is to blame for the cancer - particular foods, the environment, stress and so on. My understanding is that it is much more complex than that - why one child in a family has got cancer when all siblings have eaten the same food, been in the same environment, been exposed to the same amount of stress. It means we can't reduce it to one thing and, for people with cancer, it is really unsupportive to have them think they could have prevented it by some simple factor in their life.
I stop myself from taking on the emotions of the grieving mainly by recognising that this is not my grief. I am not the person who has lost someone. However, there will always be some families with whom I will feel more of an emotional response and some bring tears to my eyes. It is more about recognising that, ensuring I have supportive colleagues to download to, and ensuring that my response doesn't affect the care and support I can give to the family.
The thing I value most in my life is people - my children, my family, friends but I also get sustained by the natural world - I love taking my dog for a walk along the beach, listening to birdsong, seeing a beautiful sunset. Being able to experience those things and spend time with the people that are important to me is what my life is about.
I've worked with families of many different cultures and the main thing is communication and respect. I always ask whether there are particular practices or ritual or beliefs we need to take into account and mainly families are happy to share these with me. Every culture seems to appreciate someone who is warm, gentle and respectful, so that is what I bring to the situation. I have learnt a huge amount about what is important at this special time from the families.
I think that our generation, who are now planning the funerals for their parents, tend to want options, so that is what we are offering now. We have lots more options around embalming or not, eco-friendly caskets and burials, cost effective options, people spending time at home more, funerals taking place in a variety of places by a variety of people - so overall a lot more emphasis on the individual rather than doing things a specific way.
On top of my big life picture "wish list" is world peace and equality. Sounds cliched but I hate how unsafe life is for many children and families all around the world, what people can do to each other in the name of a particular ideology, and in New Zealand how unequal our society has become between the haves and have-nots. On a personal level, I just want health and happiness for those I love.
I can think of lots of examples of uplifting and inspiring things I've heard and seen at at time of death and dying, but one that has always stuck with me was a little Korean girl I was caring for who died of a brain tumour. She lost the ability to talk so could communicate by using a thumb-up, thumb-down system. Whenever she was asked about being scared, sad, upset, angry and so on, she would always reply in the negative. The only thing she ever said was that she was bored, so we organised more music and books for her. The uplifting or inspiring thing was that she trusted and loved the people around her to care for her so much that she had no fears. She was beautiful, open, trusting and filled with joy at any little thing people did for her, which was a real lesson in how to live.
Last orders? I'd like to have people who loved me with me and to be able to express to them how much I love them. I love lots of different music so wouldn't mind if it was Bee Gees, Sol3 Mio, Stan Walker, or Mozart.
Pine box, green burial? What's my preference? I keep changing my mind on this. I have always thought I would be cremated and we do a good option where we use a very simple coffin called a liner inside another one for the funeral. However, we also have some gorgeous silk shrouds, which I love and I also am quite keen now on green burials - where you are buried in a simple calico shroud quite close to the surface, so you become part of the nourishment for the trees and shrubs that grow above you. That idea of giving back to nature is appealing.
Janet Mikkelsen is a trustee of the Sweet Louise charity dedicated to supporting those living with incurable breast cancer. It was established 10 years ago in memory of her late sister, Louise Perkins. Sweet Louise's fundraising art Auction is on October 11 at Thievery Gallery, 203 K Rd (exhibition from October 7).