Anne's Story
Text of Anne Armstrong Gibson’s speech to B’Nai Brith accepting Woman of the Year award in 1994. Speech given on November 20, 1994.
Madam President, sisters of B’Nai Brith Women and special guests.
You have conferred a great honour on me today. I am thrilled and moved, and yet, I feel awkward and undeserving. Creating Wellspring was very much a collaborative effort and this honour should be shared by a number of others. I also feel quite overwhelmed. The 37 women who have gone before me have left huge footprints in our community. I feel dwarfed by their presence.
I have been asked to tell you my story. For those of you who have heard it before, I hope you will please bear with me.
It started Christmas Eve 1988. In the middle of a bustling hospital corridor, Douglas and I were told that I had malignant Non-Hodgkin’s Lymphoma. A cancer for which there was no cure at that time. Only palliative treatment was available. A pamphlet was handed to us giving a thumbnail sketch of the disease. The mean survival rate was less than three years. A day before I was a confident person, mother to two beautiful boys, a busy lawyer with a booming practice. I thought I was in control of my life. Suddenly, our world crashed in on us.
Friends, relatives and even strangers swept into our lives and formed a human net to hold my husband, our two young sons, 5 and 7, and me together. I was numb, and terrified. I was engulfed in a morass of fear and isolation.
We were catapulted into a foreign world of long corridors, white terry cloth robes and antiseptic smells. There were anesthetics and biopsies, catscans and ultrasounds – never ending blood tests. There were stretches of waiting, interminable worry. Complex decisions about treatment options had to be made with the fear of side effects always hovering close by. And there were questions like: Would I be here to watch the tulips bloom this spring? Would I be able to watch my children graduate from college? Would I be here to celebrate the new millennium with my husband?
Day by day, we began to gather a bit more control. We switched doctors and hospitals. My new doctor was Simon Sutcliffe at the Princess Margaret Hospital. He enveloped us with quiet compassion and dignity and superb competence. Day after day, we saw how other families living with cancer coped. Now, we had role models to follow. In the waiting rooms, there was humour and companionship. We shared practical suggestions. Did you know that sea sickness patches help nausea? Or did you know that Coca Cola was an antiemetic? The daily radiation treatments on the cobalt machine became part of our regular schedule. I felt safe at the hospital. We started to realize that the Cancer Society slogan “cancer is only a word, not a sentence” was true.
But as the tumours started shrinking, the fabric of our family life started unravelling. Simon referred us to Dr. Mary Vachon a specialist on the emotional crisis of cancer. Mary helped us articulate our fears and try to regroup. We also enrolled in Dr. Alastair Cunningham’s Cancer Coping Skills course. We learned about relaxation techniques and “visualization” – the same concept that athletes employ – in the years that followed. I was able to take myself to another place. When I was all alone under the whirring linear accelerator, I would go to Nassau in my mind. I’d smell the salt air and feel the warm sand between my toes. And when I was too frightened to help myself, Douglas would take me mentally into a beautiful garden – fragrant with lilacs – tranquil and peaceful.
Douglas and I stopped eating red meat. Hot dogs were banished forever. He made me drink fresh carrot juice three times a day. The apples we ate were incredibly expensive and organically grown. We read all the cancer – how to – books we could get out hands on and became overnight experts. Our conversations became sprinkled with brand new words such as metastasis and radiation simulators. But we never told Duncan and Sandy about the diagnosis. After all, it was too complicated, too serious a subject to burden young children with. Wasn’t it?
Even though I no longer went to the office in smart suits and high heels and I now wore track pants and slippers. Even though I used to be bubbling with energy and raring to go and now I was exhausted and nauseous most of the time – conventional wisdom said – Don’t tell children and they won’t know the difference. Dr. Vachon asked us to reconsider and include the boys in this family crisis.
Reluctantly, and apprehensively, we agreed. At Duncan’s first meeting with Dr. Vachon, he wanted to see her alone. While I waited outside, he asked her “Is mummy’s lump malignant or benign?” He was 8 years old. And Sandy, our 5 year old, crawled under Mary’s chair and curled up in the foetal position. After some stroking he finally asked “Did I give Mummy her cancer?” Then and there I learned that cancer is a family affair.
What became very apparent to Douglas and I is that there were resources available but only if you had the wherewithal to access them.
Simon, Mary, Alastair and I joined with Dr. Jack Laidlaw, a cancer survivor himself, a prominent physician and senior medical authority at the Canadian Cancer Society to try to put together a centre that would be a central repository of support and information. For two years we brainstormed and researched and then latterly, began to fundraise. We knew there was a void in the health care system. What we didn’t know is whether patients, their families and health care professionals would acknowledge this void.
As we struggled along on this route of “psycho-social intervention”, my cancer began to gallop aggressively through my body. After two more operations and a spinal tap that leaked, I started a dual course of radiation and chemotherapy. Two weeks later I was completely bald. I was in and out of the Princess Margaret Hospital on a revolving door basis. This was another, new learning curve. Twenty-four hours before each treatment, I took NABILONE, the medical term for marihuana. I learned that one of the drugs I was on, VINCRISTINE, came from the tropical rainforest and was an endangered species. My white count hovered around zero. My world became sterile and cloistered. Infections were the new sword of Damocles and I learned how to read a thermometer in Celsius. As soon as my temperature hit 39o I was back in the Princess Margaret Hospital for increasing rounds of antibiotics and blood transfusions. I received platelets to make my blood clot and red cells to turn my skin from yellow back to normal. My veins became harder and harder to find. Seven months later, it looked as though I was in remission. The four of us got on a plane and went to Nassau to celebrate. But on my return, Simon presented us with some somber statistics. He strongly recommended a new experimental course for patients like me involving an autologous bone marrow transplant. He wanted me to start right away. I was too tired, too frightened to contemplate more treatment. I withdrew into a shell.
Gently, persistently, Simon and Douglas coaxed me to reconsider. After I met my bone marrow buddy, Lisa Kessler and saw that she had survived so vibrantly, I reluctantly agreed to the harvesting part of the procedure. It took three operations to finally get enough marrow out of me. After, the four of us fled to England to listen to Duncan and his choir sign at Westminster Cathedral. Then we went up to the Scottish Highlands and nourished our battered souls. We became a family again.
On our return in September of 1991 and with a supply of pretty nighties, I agreed to proceed with the transplant. Two days of industrial strength chemotherapy were followed by 3 days of total body radiation. My own bone marrow was infused back into me. I was transferred from the Toronto General Hospital into my beloved Princess Margaret hospital into isolation. I was burned crisp, inside and out. Endless pain and complications made one day blur with the next. I was not allowed to see Duncan and Sandy. Douglas was emotionally and physically exhausted. He would come to the hospital and fall fast asleep. I never got out of hospital gowns into those nighties.
But my friends and family rallied around in a way that was extraordinary. They drove our boys to Beavers and choir practices and helped with homework and parent teacher interviews. They outfitted them with hockey gear and took them to the doctor for checkups. They brought me lip balm and gave me massages. Read aloud to me. Distracted me with jokes and gossip. They prepared meals at home. They brought me elegant embroidered pillow slips and silk flowers to brighten my room. They held my hand when I couldn’t talk. They prayed alone and in churches and brought me communion. We prayed together. We talked about nothing and we talked about death. We talked about the further, about fresh lettuce salads with cheese and walnuts and being able to go out in crowds again. Days and weeks passed and finally, I was out, home in my own bed. With my husband beside me, my children next to us, our dogs and cats revelled that we were all together once again.
In the middle of all this anguish, the five of us, Simon, Mary, Alastair, Jack and I kept plotting and planning our centre. We named it Wellspring and raised about $250,000. Frightened we would lose our momentum we forged ahead and leased premises, hired staff and started renovations. In May 1992, Wellspring was born. More than six thousand people have walked through our doors in the last two years. An outstanding testimony to the void it was filling in the health care system.
Wellspring lives in a quaint little coach house on Wellesley Street. It is full of sunlight, comfy furniture and lovely paintings, all donated. We have three full time staff and a cadre of caring volunteers and psychologists and therapists who offer a wide spectrum of programs. We provide one on one peer support to patients and their families living with cancer. We offer support groups led by psychologists. We have crisis counselling by Dr. Vachon. We have a host of courses from art therapy, to yoga, to therapeutic touch. We have talks led by experts on nutrition, pain management and fertility. We have the Cancer Coping Skills course and Alastair’s Healing Journey. We have the “Look Good….Feel Better” program. And we talk about wills, powers of attorney, wigs and turbans.
Day by day we provide role models to new patients. We give hope and comfort. We dispel myths that you caused your cancer through certain behaviour. And if the final diagnosis is terminal we will stay at your side as you approach death. Not denying it, but accepting it and supporting you.
Recent important research shows that support such as ours not only improves the quality of life but also increases the longevity. More than 26 months longer. This field of psycho-immunology, of psycho-social intervention is now an accepted component of cancer care. It sits along side the traditional treatments of surgery, chemotherapy and radiation as part of the cancer cycle. The National Cancer institute in the US and the Medical Research Council in Canada are funding research projects in this field. Our kind of care, in a free standing organization, is more cost effective than in a hospital setting. Even though we receive no government funding and charge no fees we are able to grow. It is community based and staffed with scores of volunteers. I think we do emulate the goals and mission of the B’Nai Brith Women. Just like you, we are involved in education and advocacy.
Wellspring and I are both moving into new phases. Wellspring has a life of its own now. It is a one of a kind place in Canada. It is inundated with requests to open in other cities. The Trustees are actively considering the best way to handle expansion. We are also in the throes of establishing a multifaceted cancer support centre here in Toronto that will involve a number of partners ranging from hospice care, palliative support care, day care and Wellspring. The plans are waiting for a go ahead from the Premier.
I too, am moving into a new phase. As you can see, I am vertical more than I’m horizontal now and my hair has grown back thick and full. Carrot juice has been officially banned from our home, hot dogs are back on the menu and I buy ordinary inexpensive apples that may or may not be carcinogenic.
Sadly, I won’t see the new millennium in with my husband. Douglas died a year ago, a gruelling eleven weeks after he suffered a massive cerebral haemorrhage. Life isn’t fair. I know that he is sharing my cautious optimism towards the future and watching protectively as our family flourishes. He guides and supports me, just as so many of you in this room have done and continue to do.
My life will never be the same again. In some ways, it is richer and more mature. I am very proud to be the recipient of your Woman of the Year Award and I thank you. By giving me this honour, you have publicly recognized the value and importance of volunteers. It doesn’t matter whether you are paid or not. Whether you are full time or part time, volunteerism forms the essence of our humanity. Without voluntarism, our society will lose its soul.
Madam Chairperson, Madam President, honoured sisters of the B’Nai Brith Women and special guests. Thank you for this honour. Thank you to the committees for creating this wonderful breakfast and for the exquisite centerpieces. Thank you for your collective eloquent words and good wishes.
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