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Ovarian Cancer - One Advocate's Journey
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Who And Why I Am
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I have been asked to speak about a personal journey - my ovarian cancer advocacy journey. How and why I became an Advocate. If you believe in fate as I do, then the answer to the question was predetermined. I was diagnosed with clear cell ovarian cancer in August 1999 but my advocacy efforts did not begin in 1999. I usually say that my advocacy efforts began when I was born. In addition, I was born premature so that will also give you some further insight.(humour) However, in reality, it is partly our psychological makeup and our life's path, which determines who and what we are to become. This is a synopsis of who and why I am. Maybe you can take something from my journey or discard as you wish.
I have always been involved in volunteer activities even as a teenager working with disadvantaged children or teaching Sunday school However as I approached my twenties and thirties I moved into the Me generation so there are some lapses in my history of volunteerism. I understand now that I sailed through my 20's and 30's without a thought in the world except climbing the corporate ladder and figuring out where my next vacation would take me. I traveled many parts of the world but I did not see what was going on around me. So, I am catching up, and I am learning as fast as I can.
The Beginnings Of Advocacy
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Events in life have a way of dictating to some degree the paths we choose and I do believe that we have control over which choices we make. My real life started in my 40's when my cousin died on the operating table due to heart surgery complications and a friend died of cancer 6 months later. Shortly after this, we became caregivers for my father-in-law who had Parkinson's disease. Then again just 6 months later, my Mother and her companion were killed by a tractor-trailer on a northern Ontario highway. The tractor-trailer was pulling two trailers loaded with steel.
I think that most here will understand the shock factor.
My Mother was on her way to visit my husband, our family and me. I remember distinctly saying, Mom, take a train or fly - you will have to go through many large cities and there are too many big trucks on the roads. The severity of the crash was such that this major highway was closed for two days and traffic was diverted for 200 kilometers. During the clean up of the highway, the road had been opened temporarily and within this window and within 24 hours, a second tractor-trailer crash occurred at exactly the same site but just on the other side of this two-lane stretch of road. In June 1997, Reader's Digest featured this crash in an article entitled Canada's Most Dangerous Highways. While dealing with funeral arrangements and estate issues, I started to ask some serious questions about how this could have happened. There were many failings in our system relating to poor highway infrastructure and commercial vehicle safety concerns. I was about to find out that much advocacy had been done in the past to little or no avail and people were dying needless deaths. This was a surprise to me. What I had difficulty understanding due to my naivety was the lack of will to effect positive and needed change. I did file a claim against the Ontario Government which said in effect they were in full or in part responsible for the deaths of two people. The lawsuit was not pursued as the Government proceeded to spend $22 million on decades old needed highway infrastructure reconstruction. Now having said this, Canadians are for the most part not the suing kind. Did I accomplish this on my own? - No - maybe it was just the straw that broke the camel's back. It was enough to know many people are now aware of these issues and guaranteed many are alive today because of these actions.
This tragedy opened my eyes to the distress victims and their families' experience. I formed a non-profit support and advocacy organization to deal with the specific issues of highway infrastructure and commercial safety issues. However, these are complicated issues and there was a very sharp learning curve and many hurdles to overcome. All that I knew about tractor-trailers prior to this experience is that they have many wheels and I can assure you that there is much more to it than this. These were tough hurdles to overcome as you may appreciate. It was actually like a David and Goliath scenario. A few people against trucking unions and government bureaucracy. Nevertheless, it was successful, laws have been changed, and awareness has improved. Ultimately, because of efforts of many, the penalties for certain violations increased from $500.00, which was the maximum fine at the time to what stands now at $50,000..
Throughout this period, I was working full time and continuing to care for my father-in-law. There were many media events including television broadcasts and Reader's Digest. There were many trips to the hospital emergency with my father in law as well. This busy life continued until August 1999.
Ovarian Cancer Advocacy
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On August 7th, 1999, I presented to the hospital emergency in acute abdominal distress. My very knowledgeable family doctor just a few days prior had referred me to a gynecologist as she suspected that I had a 50/50 chance of having ovarian cancer. I really like many of you do not remember much except that the gynecologist said that I would have to have a hysterectomy and that he had booked it for three weeks later. I guess the old expression of if I only knew then what I know now applies here. Not only had I not heard the words ovarian cancer but I had not also heard the words gynecologic oncologist. The only thing that I remember during the appointment with the gynecologist was the word chemotherapy and I remember reacting in a very verbal way. I remember saying to him that if he thought that I was going to go through chemotherapy for one year just to live two he could forget it. Well, as it turns out not only did I complete 6 rounds of taxol and carboplatin but also whole abdominal radiation with pelvic boost. But, you know 2 days between first seeing the gynecologist and the hospital emergency department does not give you much time to sort this out. People asked me how I reacted, did I cry a lot, and was I shocked. I can answer truthfully that, No, I did not cry and I never experienced any shock. The only way I can explain this to you or to myself is that I had already had the shock of my lifetime with my mother's death.
The common question continues to arise among women and that is: Why Me? Well, my answer is - Why not? I can assure you that there are many who face more daunting challenges. My whole philosophy in life has always been and continues to be to face the task at hand, figure out the problem, sort out the resolution and continue on.
The first thing that I did after my two week recuperation from the surgery was try to find out what the heck ovarian cancer was, what it meant, what I was supposed to do about it and then fix it. How I could continue to be so naive is amazing. I just assumed that everything can be fixed. I tried making an appointment with the gynecologist to answer questions but without going into details, this did not work out well. When I asked the gynecologist what stage I was, he told me, after looking it up in a book, that I was Stage 1A. It is still amazing to me that I have ovarian cancer even after the surgery, chemotherapy and radiation treatments. Having said this though, I am one of the fortunate ones in that I have yet to experience a recurrence.
Within six months of my diagnosis of ovarian cancer, one of my sisters was diagnosed with small bowel carcinoma. This past July one of my other sisters was diagnosed with Stage 3 Colorectal Cancer and is undergoing chemotherapy treatment as we speak. Therefore, that leaves us with 3 of 5 siblings who have been diagnosed with cancer in 2 years. Now I always say that I am sorry but I do not know anything about other cancers and that Ovarian Cancer is enough to try to stay on track with. However, that was a big lie, as I now of course need to educate myself on Hereditary Non-Polyposis Colorectal Cancer.
A week ago, I started the process of genetic testing at Mt Sinai Hospital in Toronto and they have also referred me to my hospital, which is Princess Margaret and their Ovarian Cancer Familial Clinic
Activities And Needs Assessment
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I was astonished at the unmet needs of the ovarian cancer woman in addition to the lack of awareness and research funding. . I was to learn that with advocacy efforts great strides have been made with breast and prostate cancers resulting in improvements in survival rates. However, I was not finding this same situation with ovarian cancer. I found that we as a society have left in many cases the ovarian cancer woman in isolation. I saw the failings relating to support and awareness. I also found that there were and are unlimited opportunities. If you have the passion and the desire, you will succeed. So my ovarian cancer journey began with a number of projects. I might just cover a few at the moment.
During chemo, I took part in an educational video and participated in community awareness projects and public speaking. In addition, we had a local cancer support centre, which had no forum for ovarian cancer women. This has since changed and the support group began with 11 women two months ago. During this period through chemo and radiation, I wrote letters to the media and participated in a number of different interviews in magazines like MAMM and Access. This is what I mean by Read and Write. Be aware and then do something about it. I tried to stay in touch with what was happening and when I saw an opportunity, I made efforts not to miss an opportunity to write letters to the editor or contact any form of media. There were few declines but there were many successes. When I speak about multi-tasking, it refers to optimizing my time and resources. I rarely ever do any project that cannot be used for multi-purposes. I initiated an on line survey last October which dealt with The 5 Most Important Issues of an Ovarian Cancer Woman. This particular survey, while not being scientific in nature served a number of different functions. It allowed women to express their needs and their views and this survey was published, not in medical journals, but different support forums. So in fact, this task allowed not only a form of participation for ovarian cancer women but also awareness on several different fronts. Earlier this year, I was interviewed by a journalist from the Toronto Star about ovarian cancer. I widely circulated this article. Due to the overwhelming response the paper received, they published a full page of reader responses and subsequently a second article was written. This paper has a daily readership, which exceeds 2 million, and with both articles and a full page of printed reader responses solely on ovarian cancer, the actual target exceeded a readership of 6 million people. This cannot be understated, as I received calls and emails from people I had not communicated for 10 years.
This spring I enrolled in an Oncology course, which is part of the Professional Nursing Program. I was the only non-nurse student. As part of the course, I gave a presentation to the nurses and the teacher on Ovarian Cancer. As you are aware nurses and family doctors are required to deal with a vast variety of illnesses and their lack of a detailed understanding of ovarian cancer should not be a surprise. My interest in signing up for the course was not so much for what I could learn, but what I could teach. Those who can and will make a difference on a daily basis. This past July I was a participant along with a gynecologic oncologist and a researcher on the Michael Coren Live television talk show. I can truly say I was very happy with the exposure and the time allotment during the show
It is commonly known that Ontario and Canada have a shortage of gynecologic oncologists. I wrote a letter, which outlined not only the shortage of these specialists but also signs and symptoms as well as incident and mortality rates of ovarian cancer. A number of media outlets published this letter but as well I also sent it to 150 Members of Parliament including the Premier of Ontario, The Prime Minister and Health Care Ministers. The reason for the letter and its timing was appropriate in that the gynecologic oncologists had been trying to negotiate their contract with the Minister. The Minister of Health had stopped negotiation with these specialists for whatever reason. Subsequent to the letter, we began a petition which was widely circulated throughout the province. The Province of Ontario has a population of apprx 12 million people with large populations centered in Toronto and Ottawa. Thousands of signatures were obtained... Prior to the completion of the petition, the gynecologic oncologists were able to finalize their contract and in effect more specialist positions are being provided including additional support staff. Now, maybe the petition just by its publicized circulation contributed to this positive outcome. Who knows? However, what I do know is that the thousands of people who signed the petition are now at least somewhat aware of Ovarian Cancer.
In September this year, I again signed up for a second oncology course with another 15 nurses. I will have the opportunity to share my perspective on ovarian cancer. As part of this course, I initiated a study on the physiological needs of the ovarian cancer patient relating to the CA125 tumour testing and I will present the abstract findings during the poster presentation when I return from this conference. You see each one you tell will tell many others Therefore, it is not so much a question of what I have been able to do but the fact that I was able to make some form of contribution.
Oncologist/Researcher/Patient
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There is no better opportunity for Researchers, Oncologists and Patients to work together in developing strategies and plans to create further awareness for ovarian cancer. We can, as Patients, I believe be the best source of support to the medical communities. We know about our disease and understand the issues. However, I am often mistaken in the assumption that others are aware. We can each be others best supporters if we communicate effectively. Patients can be an Oncologist and Researcher's best Advocates for the elusive health care dollar. We have the power to influence, change and better the lives of those women we touch on a daily basis.
The End or The Beginning
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I have witnessed a distinct improvement in the past two years in the U.S. in trying to meet the needs of the ovarian cancer communities and to effect change and a definite improvement in dollars allocated to ovarian cancer research. I hate to admit that in Canada we have a long way to go.
My final thought on my personal ovarian cancer journey is this: those of us who are well must speak for those of us who are not. Because, you see, it will one day be my turn to ask for help and I do know that it will be there for me.
Sandi Pniauskas
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