Throughout my treatment in Grande Prairie, I was scheduled to see my
medical oncologist once. I’ll repeat that – ONCE. And only after I had healed
from my initial surgery performed by a general surgeon. The surgeon
successfully removed my entire tumor and obtained great margins. Essentially
I’ve been “cancer free” ever since. But, here’s the rub: I had to decide what
course of treatment was best for myself without talking to any cancer
specialist, without having much in the way of knowledge as to the best course
of action, without completing tests that may have determined which treatment
was more effective. I was scheduled to see my radiation oncologist twice.
However the first time I met his resident only, who misspoke on the number of
treatments I would receive, but otherwise tried his best to answer my
questions. I met my radiation oncologist once, on my last day of treatment,
when he didn’t have the time or inclination to answer much.
Had I lived in a major urban centre, say Red Deer,
Edmonton, or Calgary, I would have had access to the Comprehensive Breast Care
Program. This is a fantastic program that assigns a person a navigator to help
walk them through all the steps of cancer care, to ensure that the patient is
aware of all of their options, has all the information to make an informed
decision, and has someone in their corner throughout treatment.
I was assigned a Cancer Navigator at the Grande Prairie Cancer Clinic once I was healed
from surgery. He gave me my appointment date with my medical oncologist and
taught my initial chemotherapy class (like an orientation class). In the class
we were given a list of things that might happen while receiving chemo, a list
of reasons to call your navigator immediately, and made to feel all happy,
happy cause someone was there to support you, that you have a whole team to
behind you! The reality though was that when I called, my calls would be
unanswered, or I would leave a message which would not be returned until
leaving days of messages, only to be told to contact the nearest Emergency Room
or Walk-In Clinic. Every time I had a pre-infusion or infusion appointment, I
was assigned a different RN. The reality of my treatment is that I was on my
own, even when mistakes where made (and mistakes were made which were later reported). There was no “team” to help me through,
despite being assigned one on paper. And there were times when I needed help.
Initially I called the Comprehensive Breast Care
Program centre for assistance, but they refused because I was not in their
region.
And here is where I get to the point…..
Postal Code.
The cancer care received by those in urban centres
is phenomenal. Patients from urban centres are made to feel like people, like
they matter, and they have a team that actually cares, a team that checks up on
them and makes sure that they are ok, that listens to their concerns and talks
them through.
The cancer care received by those in rural areas
(for the purpose of this story, consider anywhere cancer treatment is given
outside of Red Deer, Edmonton and Calgary), the treatment is very different. It
can be downright scary. I wish I was just talking about myself and the care I
received, but from the number of rural Albertans I’ve met going through cancer
treatment, I know now that my story is not completely unique.
I have been appalled to hear of the young mom who
went nearly two years of being misdiagnosed until finally getting frustrated
enough to schedule and pay for her own MRI which diagnosed her with stage 3
breast cancer. Of the woman who spent hours in the ER after a chemo infusion
made her so sick she lost 17lbs in two days only to not be seen by a doctor at
all. Of the person who felt something was wrong in July, received a CT scan in
August and assumed no news was good news only to find out 6 months later that
that same scan led to a lymphoma diagnosis. Of the people who never met their
oncologist at all. Of the lady who had to threaten to not leave the hospital unless
some kind of post-treatment follow-up was arranged. Of the person who was
thrilled with their care only because they don’t know what they don’t know....
Of every other person out there who has felt like only a mere cog on a conveyor
belt getting treatment, and who has fell through the cracks…..
I am writing in case one person may hear and
realize that they have to fight and research and kick and scream, and be their
own advocate.
After my discouraging meeting with my radiation
oncologist, I went to a meeting… a few weeks back I had attended seminar and
met a doctor who put me in touch with someone from the Cancer Strategic Clinical Network
(C-SCN). The C-SCN brings together stakeholders from across the
province from prevention programs, health care delivery services, research
institutes, and policy development groups to lead and support evidence-based
improvements and bring innovation in cancer prevention and management in
Alberta, to empower clinicians to provide care that is patient-focused,
accessible, and sustainable.
I have been invited to be a Patient Advisor
volunteer. The timing may not be great, while I still struggle with some side
effects from chemo, and definitely from radiation side effects. But, I am more
than pink and I have a voice, even if it may sometimes take me slightly longer
to form a thought and turn it into a sentence (who knew that chemo could affect
cognitive ability?), and I intend to use that voice.
There must be reasonable access to consistent care
for all who need it.The type of care a patient receives should not depend on
where in Alberta they are from!
The meeting I had on Monday was regarding
mainstreaming genetic testing for those diagnosed with breast and ovarian
cancer. Had I had access to genetic testing when I was first diagnosed, the
results may have changed my entire treatment plan. Instead, I now wait for
genetic results from a private company from the States and when I receive the
results I will have to make a decision as to whether I need or want further
treatment.
The comments made at Monday’s focus group will have
a direct impact on how genetic testing is done in Alberta, with changes made by
quarter one of 2019. The changes won’t fix everything, not even close - there’s
tons more that need improvement. One small, tiny, minuscule step for mankind,
but one made in the right direction. If I can help constitute change by sitting
at a table and telling my story and giving a suggestion on how I would have
felt better treated, I’ll be on that panel every . single . time. And maybe one
day it actually won’t matter if you’re from Edmonton or Grande Prairie, or
Hinton, or Peace River, etc.
After my last radiation treatment, after my
radiation oncologist left me disappointed, scared and with questions, he shook
my hand, said my treatment is done, and told me to ring the bell in the halls
of Cancer Institute, and once again I refused. Because I am not done. I’m still
healing physically and mentally, and hell, I still may need more surgery.
But I did ring the bell at Sorrentino’s Compassion House,
while in the company of new friends. A bell that states simply: “The Bell of
Hope and Compassion” because I have more compassion now than I ever have, and
because I do have hope that I will never have to grace the halls of the Cross
Cancer Institute for treatment again, that my cancer will not return, and I
have hope that the system will improve for those who come after me.
To those who have feedback regarding healthcare
services or other support services you or a family member has received in
Alberta, click the following link for more information: https://www.albertahealthservices.ca/about/patientfeedback.aspx
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