I
have wanted to write this blog for a while, but it required holiday time away
from work and some reflection on what surviving cancer means to me, nearly four
years after my diagnosis.
The
ending of one year and the beginning of another naturally causes one to ponder where their life has taken them and where it is going.
As
I get farther away from my diagnosis, I continue to remind myself that the gift
of a second life as a cancer patient is not to be taken for granted. I am more
and more grateful for family and friends who continue to love me and surround
me despite the ups and downs of a cancer survivor’s life.
According
to some medical sources, the form of breast cancer I had is the most rare, has
the lowest survival rate of 40-60%, and a life span of four to six years after
diagnosis. With the four-year mark coming in March 2014, I feel like my life is
taking on a greater sense of urgency if the survival statistics are to be
believed.
While
fighting to live through cancer, it was hard to imagine life after treatment.
It was a struggle to survive numerous treatment complications. I vowed that if
I survived, I would one day turn the terror of a cancer diagnosis into
something positive. Author Henri Nouwen once said, “I always try to turn my
personal struggles into something helpful for others.” I too want this to be my
manifesto as a cancer survivor.
Turning
personal struggles into something helpful for others sums up my last three
years of volunteering for Cancercare Manitoba. The volunteering I do is not for me, as I hope my cancer never returns.
I volunteer, hopefully, to help benefit the more than 6,000 newly diagnosed
Manitoba cancer patients who enter the healthcare system annually (over 60,000
undergo testing annually for cancer suspicion).
I
started volunteering by raising money for the cancer foundation in its annual
fundraising event, walking with a fellow breast cancer survivor and former work
supervisor, and my daughter, who both walked alongside me in my own journey.
My
volunteering expanded to becoming a speaker for Cancercare MB’s Foundation, and
a cancer patient lecturer for first year medical students.
As
a cancer patient who received inadequate treatment on several occasions in
emergency departments when cancer treatment complications surfaced, my
survivorship turned to advocacy in complaining about care to a local hospital
and to Cancercare MB. That advocacy resulted in being jointly appointed by
Cancercare Manitoba and Manitoba Health as a patient representative to the
Manitoba Cancer Patient Journey initiative. http://news.gov.mb.ca/news/?item=11726
In
my role with the initiative, along with another cancer survivor, we share
Executive Co-Sponsorship of the Patient Participation Advisory Group where we provide
the “patient voice” at the steering committee table. As Executive Co-Sponsors,
we co-chair a group of six cancer patient advisors who meet regularly to
provide feedback to the steering committee and all of its working groups whose
aim it is to improve the cancer patient experience.
With
the initial appointment to this initiative over two years ago, I have gotten
over being intimidated in providing the patient voice in a room full of the
province’s brightest minds in health care comprised of CEO’s and senior health
administrators from Cancercare MB, Manitoba Health, Regional Health Authorities
of Manitoba, and Diagnostic Services Manitoba.
Our
patient voices are not only accepted, but also encouraged to provide candid
feedback from the patient’s perspective on where to make improvements in cancer
patient care in Manitoba. To date, our patient advisory efforts have had several
successes in shaping and improving the health care of cancer patients in
Manitoba.
Our
first achievement was the development of cancer patient communication
guidelines, which are now being circulated province wide as reminders to health
care providers on how to conduct positive communication with cancer patients. http://www.cancercare.mb.ca/home/health_care_professionals/cancer_patient_journey/communication_principles_and_guidelines/
We
have introduced the use of in-person patient stories to remind steering
committee members that we are gathered to help “live” cancer patients when we
meet monthly. The patient stories often uncover new areas for improvement that are
being addressed in the initiative’s work.
We
have been influential in ensuring that neutropenia (fever and infection with
chemotherapy treatments) protocols for cancer patients who report to emergency
departments with treatment complications are consistently practiced in all
Manitoba hospitals.
Our
patient advisory group has developed a series of open letters to medical
caregivers and providers who work with cancer patients to thank them for their
compassionate care. These letters are being circulated in various provincial
healthcare institutions as a form of patient appreciation to those who work
with cancer patients daily.
Our
patient voice at the steering committee table helped lobby for an after hours
clinic for cancer patients undergoing treatment who develop complications. Our
efforts recently resulted in the opening of this service for cancer patients,
enabling them to bypass attending emergency departments for after hours care.
We
also recommended after hours care information be updated on Cancercare MB’s
website.
Currently,
our patient advisory group is working with medical professionals at Cancercare
MB to adapt a cancer patient passport from one currently being used in Alberta.
The passport will serve as a communication vehicle for cancer patients and
medical care providers when patients attend appointments, will log medications
and test results and assist with visits to their pharmacy. It will also help to
provide information on treatment at after-hours care facilities. It is hoped
that the passport will be enacted within the next year.
My
life as a cancer patient educator continued in late 2013 speaking to medical
staff who are running the Urgent Cancer Care Clinic talking about emergency
room experiences as a cancer patient, and various post treatment complications
requiring after-hours care. As well, I will be featured in upcoming cancer
patient videos with my family physician and surgical oncologist, which will be
used to provide training for patients, medical caregivers and providers on
doctor patient communication.
In
the midst of volunteering on the Manitoba Cancer Patient Journey initiative, I
was recommended by my breast cancer nurse educator last spring to become a
breast cancer support volunteer through Cancercare MB’s Breast Cancer Centre of
Hope. http://www.cancercare.mb.ca/home/patients_and_family/patient_and_family_support_services/breast_cancer_centre_of_hope/peer_support/
At
the time that I completed training for the peer support program, I was told
that I can expect to receive calls from elsewhere in Canada (and possibly beyond)
to become a peer supporter for other women who are newly diagnosed with the
same rare strain of breast cancer I had.
In
2010 when I was newly diagnosed, there were no peer volunteers with carcinosarcoma
of the breast anywhere in North America, as it affects only 0.1% of breast
cancer patients worldwide (23 diagnoses in Canada that year). Through this
blog, I have already helped at least one other carcinosarcoma of the breast
patient in Northern California who found the information through an internet
search on the disease.
The
more one is exposed to the complexities of cancer patient care in the health
care system, the more one realizes there is more work to be done. My cancer
Co-Executive Sponsor and I continue to identify areas where services to cancer
patients can improve. Our experiences and those of other cancer survivors tell
us that there is room for improvement.
As
more and more cancer patients survive treatment, employers need to be trained
on how to reintegrate them into the work force with their post-treatment
limitations. Provincial labor laws need to be enacted similar to those legislated
in the United Kingdom, which are very progressive in their approach in
protecting patients suffering from cancer and other long-term illnesses.
Pain
management of survivors dealing with treatment complications is an ongoing
need.
Post-treatment
rehabilitation through physiotherapy, occupational therapy, diet, exercise and
nutrition need to be part of a patient’s post cancer treatment, similar to what
is being done in Denmark.
Some
of these ongoing needs have been identified in the province’s cancer health
care strategy, based on feedback from our patient advisors. http://www.gov.mb.ca/health/documents/mbcancer_strategy.pdf
People
ask me where I find the time and energy to do all cancer care volunteering,
while working full time. I have a very understanding employer that supports me
in this important work. I see it not a duty, but as a passion to help others. I
share this passion with five other cancer patients, who, like me, volunteer and
believe in wanting to make the cancer journey easier for others that follow us.
Through
this volunteering, my circle of cancer survivors has widened. Each of us knows
that any one of us can relapse and become sick again. My patient advisor peers understand
the cancer patient journey as well as I do, and are among the most beautiful
people I have met in living life as a cancer patient.
In
the words of Elizabeth Kubler Ross, who spent her life working with the dying, "The most beautiful people we
have known are those who have known defeat, known suffering, known struggle,
known loss, and have found their way out of the depths. These persons have an
appreciation, a sensitivity, and an understanding of life that fills them with
compassion, gentleness, and a deep loving concern. Beautiful people do not just
happen."
It
is for cancer patients and their families that I lovingly do this volunteer
work. I understand their struggles. I understand their fears. Spending time
with other cancer survivors to make lives of other cancer patients better as
they journey through the medical system gives me the Strength, Courage, and
Determination.
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