February 11, 2002
Doreen Jaaskela's Story
In November of 95, I found out that my back pain was stage 1V mets that had developed slowly from my modified radical mastectomy of 1980 followed by a prophylactic in 1981. I won't bore you with all the details of the progression of my cancer but this Spring I was put on palliative care.
I know that we are lucky to have the pain and management system clinic here in Kelowna for I have been under the care of Dr. Fyles who has made sure that she kept my pain under control and y ou must forgive the faults in my presentation because it is very hard to think clearly when you are heavily drugged.
I chose The End of Life as the topic that was of great interest to me because that is the stage of the game that I am at right now. In the Fall of 97 I bought a computer and you have to realize that I was computer illiterate but I thought it would be fun to keep in touch with my children by e mail and also if I got to the stage where I had lost my mobility then I could play bridge on the computer and that would certainly occupy any spare time. Well, buying the computer saved my sanity because when I went on the internet in July 1998, I discovered that there was a metastatic breast cancer list Club-Mets-BC started by Gilles Friedman for any person with metastatic breast cancer or any caregivers or family or friends that needed more information. When you subscribe to a mailing list, you get e mails in your inbox from other breast cancer patients who are also subscribers, and you can share your experiences and questions with them too.It was a great surprise to learn that I was not alone in my illness and there were lots of women and men who had metastisized and were trying to live their lives with the greatest quality of life possible. I found out about the treatments that they were getting and the good and the bad results. The people on the lists were from all over the world, Canada, the United States, Europe, Australia and New Zealand and South America. From this list came Support, Love, Knowledge and the most important Communication. Of course there were deaths and we all grieved and nearly always the caregivers would thank us for all the support and love that we had given and would tell us that it had made a great difference to that person's quality of life. I know this to be true for I lost my feelings of isolation and I came to the realization that I could fight this disease and try to gain some extra time. After all they kept discovering new hormones and I was put through the whole lot - started with tamoxifen but the doctors at the Vancouver Clinic did not investigage the terrible cough that I had developed but here in Kelowna my oncologist send me for a lung scan which showed pulmonary embolisms and I had been walking around for three months with . these. I had various other hormones which possibly helped to slow down the spread of my mets. I am now on Faslodex and my information on this medication came from friends on the breast list. I asked my oncologist about it and she thought it was not available in Canada but it was being given to patients in Penticton and Vancouver on compassionate grounds by AstraZeneca and she applied on my behalf and I was accepted and have had three treatments so far. I have seen my last bone scans and know that my time is very limited now and if the new medication does not slow my mets down then there is nothing else left to help me.
Because I live in Kelowna I have been very lucky for every week I can go to the Relaxation Class at the Cancer Clinic which helps so many patients It is 1 1/2 hours of love and support and visualisation and soothing touch from the volunteers and communication with other patients. Then there is therapeutic touch administered by one of the nurses and that does help relieve tension. There are also hospice volunteers and I have been lucky enough to have been given a wonderful volunteer - she comes once a week and one can say anything to her and she will help me to speak out about the things that frighten me and the things that I need to talk about that is too hard for my husband to talk about. Sometimes it is like having the world taken off your shoulders.
Then there is the pain management clinic and I am sure that without the help that I have been given by this clinic that I would not be here today. The doctor works with a team inclluding other oncologists, the head pharmacist and the pain nurse. They work together to determine treatment and possible changes in medication.
I had a good friend who was going crazy with the pain she was having from her mets and the hospital in Vancouver where her husband had taken her could not manage to bring her pain under control - so I told him to find a hospital that had a pain management clinic and insist on taking her there - he did and it made a world of difference for they got her pain under some control and she had some quality of life until she died. She died with dignity too for she was heavily sedated at the end so that her passing was peaceful.
At least when you are on palliative care - it gives you a warning time so that you can do some things to help those that you are going to leave. I read a wonderful book for children that tells the story of animals and birds and fish and flowers and people that all have to finish their lives in this world and my 9 year old granddaughter and I read this together and cried together and now she knows that my time is short but she understands. I went with my husband to the funeral parlour and we arranged as much as possible ahead of time. I made lists of people to be notified - I made up most of my obituary - gave my children most of my jewelery and shared the books and silver that I had brought from England that would not mean anything to my husband for this is my second marriage. So my children and my grandchildren know my situtation and they visit when they can but the State of Maine and the Dominican Republic are far away but my eldest daughter lives in Nanaimo which is at least much closer.
I am convinced that one cannot use the word cured for breast cancer for that is not true although it is possible for some people to be lucky enough that the cancer does not re-occur. I was told that five years after my first Mastecomy that I was cured! In l995 I was told that the probability was two good years and the quality of my life would be diminishing - well that was true for I have gradually lost a lot of mobility and the medications have made it very difficult to think clearly but I have tried to take one day at a time and that has been possible with all the help that I have received especially from my husband who has been my caregiver and has done so much for me so willingly and from the Cancer Clinic where it seems that every person gives out at more than 100% and from the breast lists that are found on the Internet especially the two that are for people with mets or stage 1V as you may call it and also from the help that I have been give to keep the pain under control.
I have my name down for hospice as I want to be in hospice when I can no longer look after myself - I do not want to die at home and leave bad memories for my husband and also I want to be under the care of Dr. Fyles so that I know that I can die with dignity and that is very important for all of us that have breast cancer.
I think that communication between the patient and the doctor is of the utmost importance. Both in attitude and in speech there must be a link. I have made this link, I have connected, with all my doctors but for a time there was no communication with one of my doctors who completely ignored my husband and never even said "hello" to him and made me wait at least one hour at every appointment, even when I had the first of the day.
Such a negative approach does nothing to help a patient frightened enough about the battle with cancer. This may sound petty but the long wait sets the visit off on the wrong footing from the very start for patients frightened to see their doctor - scared that the news is going to be bad. The fear makes the long wait agonizing.
To sum up - I do feel that communication is the most important factor especially for any patient that wants to know the truth. The patient must be able to talk about the factors that are bothering her or that need working out. If you are trying to battle this disease then you need help from all the medical staff that are working on your case. I know that I would not have been able to fight for these many years without the ongoing help that has been offered by my medical teams including the nurses at the Cancer Clinic who are always so pleasant and helpful..and especially the pain and management system clinic who improved my quality of life so much.and my general practitioner Dr. Penney who helped me every step of the way, and my oncologist who tried to find a successful medication to keep my mets stable.
February 11, 2002