Gabrielle – “I’m an over stayer!”

After her second mastectomy, Gabrielle Prince’s male oncologist said, ‘You have as much chance of getting another breast cancer as I do.’

Gabrielle’s first breast cancer was tiny when found in 2001. “I was a text book case,” she said. “We found it early and dealt with it quickly. Clear margins and no lymph node involvement.” She chose a lumpectomy with radiation to follow and her oncologist’s whimsical prognosis was based in part upon the timely delivery of the radiotherapy plan.

Gabrielle expected her radiation treatments to begin within the clinically recommended time but the hospital waiting lists were unacceptably long at the time. “I tried to do everything right – especially finding the cancer early – so I wanted to get on with the radiation but it was four months before they offered it to me and by that time I’d had a recurrence and didn’t need it. I needed a mastectomy.”

Eight months later, Gabrielle was diagnosed with a new primary in the other breast. Once again, it was found early with clear margins and a good prognosis. A year later, Gabrielle was diagnosed with secondary breast cancer in her neck and liver. “Then in 2005 they said, ‘You have six to eight months – better get your affairs in order.’ It’s now 2009 and I’m still here. I’m an over stayer! It can be quite embarrassing – I keep turning up!”

Gabrielle had enjoyed her job as a National Sales Trainer for a large retirement village organisation but decided to leave before her first course of chemotherapy began. “They gave me this huge farewell at work and, as it turned out, I could have kept working part time through my first round of treatment.”

While the first went well the second round of chemotherapy was hard on her. “My energy levels dropped so and I used all I could spare to look after my husband and our family. I have two children, two grandchildren and am one of six siblings. They all took this very hard.

“I started to step back and watch myself go through the process. It was fascinating. Before my diagnosis I thought, if you have cancer it’s the same animal, no matter where it is in your body – but it’s not and there are so many treatments for all the different types. I don’t think people realise that and I also think they don’t always understand that the cancer is a part of you – your body created it. I got swamped with advice about Auntie so and so who had this and that and I was given so many books to read. I was overwhelmed with information, always well intentioned but just too much.”

This prompted Gabrielle to tell friends and family how to talk to her, helping them to understand her situation. “I know how hard it can be for them and unless you help, this huge awkwardness can develop. I say, ‘If you want to know how I am, please ask me – and we can have a normal conversation too, about normal things – we don’t always have to talk about how I am.’

“People want to do something for you – they need to feel as if they are being helpful and they should be allowed to do that. I invite friends over and they say, ‘I’ll only come if I can bring the lunch’ and I say, ‘Well how ‘bout I do the salad and you bring the bread?’ They feel happy contributing something and they do it because they need to. It isn’t good to keep turning people down. It’s a joy for them when you ask for help – they feel honoured to be asked and we have to allow them this opportunity. Even if you don’t want them to do anything, make something up! You may not need it but it’s good for them.”

In spite of this openness, she feels people still treat her as if she is sicker than she actually is. “Last November people said how ‘well’ I looked and when I saw them again after Christmas at other social occasions they said, ‘When we saw you in November we didn’t think you would last until Christmas’! I have an email list of people who want to know and when something happens, I send a note. People can come off the list at any time.”

Gabrielle admits to being perplexed by her cancer. “I feel like my whole life is 50/50. Whichever way I go on this journey I seem to be doomed but yet I cannot just sit here and wait for something to happen to me. When all chemotherapy options are exhausted, I’ll try alternatives, I’ll look at healing – I’ll research all options out there that I might be comfortable taking. It’s about gathering information so I can make good decisions. Everyone travels this journey differently. Some want to know everything and some don’t. I certainly respect the decisions of others but I want to know everything.”

She welcomes questions from those who also want to know everything and replies with equal honesty. She is often asked what the pain is like. “It’s not a stabbing pain – more like a very bad flu where your bones ache, muscles hurt, feet hurt. The starting point for me is the small of my back and then it escalates from there. The pain saps my energy. Some days I can sleep from 9pm to 11am quite happily, get up and have brunch, go back to bed at 3pm, get up for dinner then right back into bed afterwards.”

She is well supported by family and friends but sometimes finds it hard to ask for help. “I’ve had some wonderful offers – such special things and I do find it hard to ask even though I know who to go to for what and the help would come without question. Sometimes I think I’m waiting until I’m sick – and then I’ll ask! I’m still able to drive and one of the hardest things will be when I can no longer do that. It’ll be tough.”

Gabrielle admits that she has been in denial at times but understands she will most probably die of her breast cancer and does not have that long. There is still much to do. She is a budding artist and helped organise a fund raising art show for the North Shore Hospice last year. The exhibition exceeded all expectations by raising $10,140. “If I’d been given five years to live I wouldn’t have held my art exhibition in July last year. We’re planning another art show now to raise more funds for Hospice – mid-year or ASAP in case I don’t last long!”

Planning her funeral and other arrangements has enabled Gabrielle to make her wishes clear and to ensure that loved ones receive something of hers they value. Many have requested a painting; some have been given treasures already and others will receive them after her death. Gabrielle has spent her life offering kindness and a remarkable generosity of spirit to others and even after her death she wants to ensure everyone is looked after.

“I’m glad they gave me a time frame, even if they haven’t been that accurate! Some people prefer not to be told but I wanted to know so I could plan. That meant I could do a lot of things I might have put off, like our trip to India. I’ve planned my funeral and have sorted out some things I don’t want my family to be burdened with. Knowing has also allowed the family to talk more openly about my situation and they’ve chosen possessions of mine that are special to them, things they want, not what I think they should have.”

Gabrielle resisted contacting North Shore Hospice at first because she shared a commonly held view that ‘Hospice is where people go to die’. Now she cannot say enough about the caring staff and all they are doing for her. “Introduce yourself to Hospice early, not in the last ten days of your life. They have so many projects and programmes running and the people there know what it’s like and what to do. They let you know you are in control and that’s so important – you tell them what you need. Hospice specialises in pain management. I would be struggling if it weren’t for them. They have adjusted my morphine levels to keep pace with the pain. On the bad days when you just need to talk, Hospice is such a haven. Someone is there to say wise things and make you feel able to go on. You’re allowed to feel depressed, angry and be in denial.”

Hospice staff members were particularly helpful when it came to telling the grandchildren about her situation. Her three year old grandson ‘loves me to bits’ but the seven year old was more challenging. He was told the news and then encouraged to have a quiet think. He returned and confided that he was afraid to go upstairs, lest she die while he was out of the room. “We explained to him that I was going to die later, not today!” It is also primarily for the grandchildren that Gabrielle has decided to hold her funeral service at home, a place comfortable and familiar to them.

Before cancer she signed up as an organ donor but now this is no longer possible so she has authorised either the Auckland or Christchurch medical school to use her body to further the studies of their students. “I’m happy with this and it’s really important to me that I’m useful after my death. If they can learn something from me then that’s a really good thing.” She has advised Hospice, her GP and her family of this wish but it means there will be no coffin at her funeral service. “We’re having the normal proceedings at home with a celebrant – a familiar place for my grandchildren. The medical school can hold my body for up to two years and then the family can receive the ashes. I want to be buried alongside my mother and father and I do want a headstone. I am not a headstone visitor myself but I think it’s important to have that history, to have a ‘place’.”

As positive as she is, Gabrielle does have sorrow and some regrets. “It is painful for me to see my husband so devastated by watching me disappear before his eyes. The hardest thing I’ve found is coming back from the oncologist and telling him of the cancer’s progress. Sometimes I’ve sat at Lake Pupuke until sunset because it’s just so hard to go home and convey the news. Right now I can’t travel or fly, can’t go to movies (crowds endanger her depressed immune system) and have to be very careful what I eat when I’m out. A huge regret is not being able to go to New York to see my son and his wife. They came and stayed for three years when I was given such a short time to live and their time here was a blessing and sheer delight for me. I wish I had enough money to fly my family here to see me because I cannot travel to them. I’d love to win the Big Wednesday so I can give everyone a hand and make a huge donation to Hospice!”

These days, Gabrielle can alternate between joy and sorrow, pleasure and pain but she is most upset when friends, with the best of intentions, make her feel sidelined and alone and it is this loneliness she wishes to highlight. “There are no rules on how to behave as you approach the end of your life but there is no practice run either. This is it. People who are well sometimes say, ‘if I was in your position I’d do this’; others say they don’t know how they would react but hope they could be like me.

“How I thought I’d feel a while ago is not how I am feeling now. Some days I don’t give a stuff – just let me go, it’s not worth it. But 90% of the time I don’t feel sick and wish people wouldn’t treat me as if I am. I want to say, ‘Why don’t you invite me for coffee? I am still me and I want to be needed. Please tell me or ask whatever you like - I won’t be upset by it. I want to be part of the world and part of your life as I always have been, not just put in a corner to die. Please don’t shut me out and please don’t leave me on my own.”

Gabrielle finds that as long as she has something to look forward to and motivate her, she’ll get up, get out and keep busy. “Up until now there’s always been something – my art show last year, visitors from overseas. Right now I don’t have anything and I’m finding that quite difficult. It is hard to plan ahead – I don’t know what is going to happen three months from now because I was supposed to be dead last Christmas!”

She says it is unlikely she will see her next birthday but would like to keep embarrassing everyone by turning up for another year or so.

“I feel as if I’m walking on a tightrope, way above the trees and the view from up here is just lovely! I’m cramming in everything I can think of that I can do. I can’t fly at the moment due to air conditioning and my depressed immune system. I do get the speed wobbles up here and sometimes I’m clinging on by my fingernails and I know that one day I will fall but I’ve stayed up here longer than they thought I would. The last round of chemotherapy was keeping things at bay but I developed pneumonia and had to stop for nine weeks. The first two weeks of my current series have not worked and I’m on the last shot now and this one will work. I’m determined that it has to.”

Gabrielle has thoroughly enjoyed her life. “Good parents, a wonderful childhood and I’ve taken advantage of opportunities even if they were far bigger than I was. I’ve had a lot of fun. I love people and have made fabulous friends. We are a close family and I adore my children and am so proud of them.

“Before my recurrence I had many ‘what ifs’? ‘What if it comes back? What will I do?’ Now my ‘what ifs’ are ‘when?’ ‘What if I live for another year? What if I live for another five?’

“You know me, I keep showing up. I’m an over stayer!”