Surviving breast cancer
My life changed irrevocably in ways I could not have envisaged when I was diagnosed with breast cancer in July 1992.
Cancer is a blow to everyone it touches. The period immediately after diagnosis can be a time of fear, anxiety and frustration, for us and our families. We, the patients can be on an emotional roller coaster, from hope to despair, courage and fear, humour and anger and perhaps the most difficult of all, uncertainty.
My sister was 46 and I, 49 when we had our first routine mammograms. We were both diagnosed with a tumour of the left breast. Five days later we had surgical biopsies which showed that my sister's tumour was benign but that mine was malignant requiring me to have a modified total mastectomy the following week.
For many cancer patients, myself included, this is their first experience of serious illness and it can be incredibly isolating. For me there was no isolation. My sister and I were sharing the same feelings, the same pain, the same anxieties.
In my case my breast cancer was such that I was classified as being at high risk of recurrence and one of the treatment options offered to me was the opportunity to participate in a new clinical trial which had just commenced at the Royal Melbourne Hospital. The treatment consisted of three courses of high dose chemotherapy and would require me to have a "bone marrow rescue" after each course.
My background was medical science and I was fully conscious of the implications of my lymph node status. I was aware that the cancer could already have spread to distant parts of my body and, if this was the case, that any treatment I would be offered would be palliative – designed to relieve symptoms and slow the growth of the cancer rather than therapeutic – designed to cure. The reality that I may not have many years to live was devastating.
I had to undergo a number of scans spread over four days, with a weekend in the middle, to determine if I was cancer free. This whole time was unbelievably stressful and the tension for both my husband and myself while awaiting each result was enormous. I was at my most vulnerable during this time and found it virtually impossible to find anything positive to focus on to help raise my spirits. We decided to go away for the weekend hoping that a change of surroundings would help alleviate the stress which proved to be the case.
I spent seven weeks in hospital having chemotherapy, and became close to a number of incredibly brave women in their early thirties with young families who were undergoing bone marrow transplants for leukaemia or lymphoma. They faced the knowledge that if their transplant was unsuccessful the inevitable outcome was death and this changed my perspective totally. Prior to that time I had considered myself too young at 49 to be diagnosed with cancer. I now realised how lucky I was in comparison. I had seen my children reach adulthood and knew they would remember me after my death. My young friends had to face the reality that their children may not remember them, that a stranger would watch them grow up and perhaps not love and care for them as deeply.
A cancer diagnosis need not necessarily be a totally negative experience. It can provide the opportunity to step back and reassess one's priorities in life with the ability to make changes if one desires. There is no guaranteed cure for breast cancer. The knowledge that the cancer may return allowed me the freedom to tell my family and friends how much they meant to me. I had the opportunity to resolve any "unfinished business". If I were to die tonight my family and friends know how much I love them and what they mean to me.
Cancer also allowed me to make the choice that in future any decisions I made would be true and right for me as an individual rather than for the family in general. If I was unhappy about a situation I would say so rather than resent it in silence. However the converse also applied. When I was happy I would acknowledge it, something I had tended to ignore, taking it for granted that my family and friends would somehow know intuitively that I was pleased.
It is all too easy to become overwhelmed by statistics when diagnosed with cancer. You read about five and ten year survival figures and automatically relate them to yourself. What people fail to take into account is that these relate to large numbers of patients not to specific individuals and that we all respond differently. This becomes very apparent when you hear a group discussing their experiences with chemotherapy or radiotherapy. The way in which you choose to interpret statistics can have a profound effect on your approach to life. If the statistics state five year survival as eighty percent I prefer to class myself as one of that eighty percent. It is a question of perception – is the glass half full or half empty? You cannot live without hope.
Living with uncertainty as we do makes me appreciate every day – never to take the ordinary or mundane realities of daily existence for granted. Another positive I gained from a cancer diagnosis was that one does not put things off. So many of us go through life constantly saying "I'll do it next year". For me next year may be too late. I still live my life very much in the present and on a day to day basis but I do not get out of bed in the morning and think "is this cancer going to come back today"?
I acknowledge that one day it may but it does not dominate my thoughts. The fears and anxieties have never completely disappeared but have become incorporated into my day to day existence and have lessened in intensity with the passage of time.
I have set myself what I considered to be realistic milestones of achievement since I was first diagnosed. The first was to survive for two years. When this was reached my family and friends had a celebration. The next was to reach three years. Another celebration! Then four years. I remember saying to my oncologist not long afterwards something I had never put into words before – that I thought I would hit the "magic" five years even though not necessarily cancer free. In July it will be five years, five rich and incredibly rewarding years!
When I was asked by the doctors if I would speak to a small group of patients considering participation in the trial my life was enhanced and enriched in ways I would not have dreamed possible. The resulting friendships were deeper and more meaningful for me than many longstanding friendships and led to the formation of a breast cancer support group which I believe has been fundamental to my survival.
The group has now been in existence for two years. We have come to care deeply about each other, sharing the good news and the bad, the laughter and the tears. The group has allowed us the freedom to express the thoughts that others may not wish to hear and to put our own situation into perspective. The feelings of isolation no longer exist, we know they are understood and that we do not have to put on a positive face at all times.
Some of our friends have died. Their courage and dignity in sharing their last days with us have been an inspiration and have helped us to face and talk about our own fears of death and dying. Sherwin Nuland, in his book How We Die writes eloquently about hope.
"When my time comes I will seek hope in the knowledge that insofar as possible I will not be allowed to suffer or be subjected to needless attempts to maintain life; I will seek it in the certainty that I will not be abandoned to die alone; I am seeking it now, in the way I try to live my life, so that those who value what I am will have profited from my time on earth and be left with comforting. recollections of what we have meant to one another."
People often ask me if I am frightened by the thought of the cancer returning and what I will do if it does come back. My answer is that I honestly don't know. I have definite ideas at present as to what I think I will do but until I am faced with that situation I cannot be certain. However hope for the future is a fundamental of my life and I believe that every day that I live tips the odds a little more in my favour.
by Avis Macphee, Co-ordinator, Breast Cancer Support Group, Bone Marrow Donor Institute.
Sherwin B Nuland/ How we die: reflections on life's final chapter. New York: A.A. Knopf, 1994.
Reprinted by permission from the Anti-Cancer Council of Victoria Breast Cancer Support Service Cancer Helpline Newsletter, No. 5, May 1997 and with the permission of Avis Macphee.
