When I was diagnosed with breast cancer in my early 30s, I was mad as hell. I was too young and my children too vulnerable. Not long afterwards, my marriage ended and I became a frayed-at-the-edges single mom with bad hair who yelled too much and stapled Girl Guide badges on instead of sewing them.
I channelled my frustration into organizing advocacy efforts to lessen the risks of my kids getting cancer and making the experience of cancer better for patients who followed me. That was 30 years ago, the beginning of the cancer movement. By demanding a voice, better information and fewer obstacles to treatment, accountability for research funding, and investment in person-centered care and primary prevention, advocacy has changed the way we think about the role of the person with cancer in the medical process.
Just like parenting, advocacy efforts demanded urgency and perseverance and daring and a razor-sharp focus on solving problems and not letting the chaos win. I earned a reputation as a pain-in-the-butt advocate, with my daughters and in the cancer community.
Our movement’s crown jewel came in 2005. That year, the Campaign to Control Cancer—a coalition of 80 groups, all focused on cancer—organized meetings across the country between advocates and elected officials, calling for the federal government to fund the Canadian Strategy for Cancer Control, a national plan to reduce incidence and death. The groups served many different agendas and types of disease, but the hell of cancer is universal, and in that moment the community united for one bold move. And it worked.
The meetings, along with a series of full-page ads in the Globe and Mail, culminated in 2006, when Prime Minister Harper funded the Canadian Partnership Against Cancer, with $260M over five years for the agency to lead the national plan.
The goal of the cancer plan was to reduce the number of Canadians diagnosed with cancer, enhance the quality of life of those living with cancer, and lessen the likelihood of dying from cancer. Targeted actions outlined in the business plan for the Canadian Strategy for Cancer Control would prevent 1.2 million new cases and prevent over 400,000 deaths in the next 30 years.
That simple, clear message promised to further galvanize the cancer movement with urgency, perseverance, and daring.
In the decade after that victory, I grew comfortably apathetic. I survived far longer than expected and I achieved two goals: seeing my daughters become confident, compassionate, accomplished and thoughtful women and helping secure Canada’s cancer plan.
Late last year, my survivor luck ran out. A new diagnosis of ovarian cancer vaulted me back into the powerful cancer system I had long lobbied to improve.
And there have been improvements—the Internet makes information and other patients easier and faster to find. The Taxol to treat ovarian cancer that I lobbied for back in 2003 has become the standard of care. There is immediacy and certainty about treatment (if not outcomes), at least for vicious ovarian cancers. A gynecological oncologist—the surgical specialty that improves the likelihood of a good outcome by about 30 percent over general surgery—saw me within two weeks of referral and surgery happened within six weeks. The nurses were emailing about old pathology and genetic reports weeks before my appointment, and answered my questions within hours—including on weekends. I was respected as an equal part of the process. But it was still as lonely and frightening as 30 years prior. Cancer had me by my “ladyballs” and it made me mad as hell. Again.
What is especially enraging the second time around is that many of the things we fought for beginning 30 years ago got worse, not better.
For example, weeks into my chemo, the Canadian Partnership Against Cancer released “Living With Cancer: A Report of the Patient Experience,” detailing experiences of more than 30,000 Canadians, and demonstrating that while cancer may be well treated, many Canadians experience serious preventable physical and emotional side effects of the disease. New research shows that as many as 30 percent of cancer patients develop PTSD within six months of diagnosis—a rate similar to that of combat veterans.
When we lobbied for a national cancer strategy in 2005, we outlined specific business goals to ensure that cancer patients’ needs would be better served by the health care system. Six years later, CPAC released a report outlining a framework for achieving those goals: “Pan-Canadian Guidance on Organization and Structure of Survivorship Services and Psychosocial-Supportive Care Best Practices for Adult Cancer Survivors.” The recommendations included standardized assessment for distress and referrals to counselling and support.
Thousands of cancer patients who developed PTSD since then didn’t have to.
Why didn’t the innovative Canadian model for health systems cancer care delivery—and its patient partner organizations—act more quickly in response to evidence?
Because they were mandated by the previous Harper government not to. Even though advocates played a large part in advancing the Canadian Strategy for Cancer Control, once it was funded, CPAC ended advocate input and put in place a taxpayer-funded, group to be a patient voice, without defined goals or outcomes measures. This mandate continues. In a recent evaluation of CPAC by Health Canada, the government underlines the importance of not assuming an advocacy role and not engaging with advocates or the public.
I believe that the absence of a strong advocacy voice and influence is why Canadians have grown apathetic, and are voting with their feet and decreasing donations to cancer groups, while the cancer plan is failing—and not just in the area of supportive care.
Federal support for the cancer plan was premised on preventing 1.2 million new cases of cancer and over 400,000 cancer deaths over the next 30 years. When we started our campaign in 2005, about one in three Canadians were facing cancer. Today, one-third of the way through that timeline, one in two Canadians will develop cancer in their lifetimes and one in four will die of the disease. And despite the preference of Canadians for preventing not curing cancer, data collected by the Canadian Cancer Research Alliance found that prevention only gets about two percent of research funding.
CPAC was supposed to kick-start and galvanize a new era for the cancer movement in Canada. By sidelining the powerful stories, urgency and analysis that embolden advocates to transform health care culture, by establishing a governance structure driven by the priorities of provincial government representatives, this government agency has by design, undercut the momentum, efficacy and legitimacy of the cancer movement in Canada.
This is wrong and it can’t be allowed to continue.
The solution will not come from within or from more government funding. Governments did exactly what the 700-member cancer sector asked of them, spending more than $700 million since 2006. This has not been enough, in the face of the competitive, fragmented efforts and lack of leadership from the hundreds of cancer groups in Canada.
I want the urgency that I feel as a patient, the fight to stay alive, to be mirrored in the army of cancer organizations, charities, and policy-making systems. I want the whole cancer industry to become powerful, single-minded agents of change, focused not on individual organizations or brands but on people and results.
With two cancers and 30 years of advocacy under my belt, I’m more committed than ever to reducing the risks of my kids—and now my grandkids—getting cancer and making the experience of cancer better for all the patients who follow me.
Which is why this festive April cancer season, I’m dropping the blasé and flinging my turban back in the fight.
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This is an amazing article Pat I am very proud of you and what you’ve done for the fight against cancer and I’m glad that you’re treatment for ovarian cancer is going well l too had an experience with skin cancer this year. Congrats again happy your doing well.
Powerful message in these words of knowledge and wisdom! Pat this very article sets a presedence for many other outlets of conversation. The courage you took in your first experience with cancer proved that not only are you a warrior in the big battle but for me you are a “Joan of Arc” . To carry the worry of your country’s Cancer initiative of your shoulders while raising your beautiful daughters and showing women that not only did you fight your personal battle you were strong enough to put others ahead of your burdens. With much love and respect I thank you for being a wonderful influence too so many that you’ve never have met . It shows you have a heart made of love and the shoulders of a warrior Queen .
Pat – So sorry you are on this journey again. And yet, as ever, you are a tour de force and an excellent writer! We are on a big advocacy campaign to change the outcomes of this disease, would love to connect with you when you are up to it.
Good to hear from you Elizabeth – have been in touch with TMU and love to get invovled with Ovarian Cancer Canada – nothing stirrs me more than a big advocacy campaign – onwards!
Happy IWD+1
pat
Pat, thank you for writing this piece, I learned much from it. Cancer has been in my family and well as my friends. I was not aware of the PTSD association as you mention. It reminded me of this from a peer reviewed medical article and I think that often the health care system fails to accurately understand this:
“All illness has both psychological and physical dimensions. This may seem a startling claim, but on reflection it is uncontroversial. Diseases don’t come to doctors, patients do—and the processes by which patients detect, describe, and ponder their symptoms are all eminently psychological. This theoretical point has practical implications. If we adopt a “bio-psycho-social” approach to illness generally, one which recognises the biological, psychological, and social aspects of our lives, we become less likely to neglect the treatable psychological origins of many physical complaints (from globus hystericus to full blown conversion disorder) and the treatable psychological consequences (such as depression and anxiety) of much physical disease.” Source: Butler C, Zeman AZ. Neurological syndromes which can be mistaken for
psychiatric conditions. J Neurol Neurosurg Psychiatry. 2005 Mar;76 Suppl1:i31-38. Review. PubMed PMID: 15718219; PubMed Central PMCID: PMC1765684
I agree that yelling from the rooftops is necessary to create awareness but when you are directing your ire at bureaucratic healthcare organizations and expecting a positive response I think you will be disappointed.
Sometimes sitting around the kitchen table, having intimate supportive discussions about the issues and making small differences in someone’s life is more rewarding.
But, good on you. Get better and come back as Nasty Pat Kelly , Cancer Warrior.
Pat: I remember you & Barb Sullivan starting Breast Cancer Support Services (It is now dead & buried). I also miss seeing you grocery shopping in Burlington.
So sorry to hear that you are experiencing more health issues. I am certain you will handle this “problem” with the same fight and determination that you possessed with breast cancer. Good luck and I will keep you in my prayers. KEEP SMILING.
Hi Bev – lovely to hear from you! I just sent Barb Sullivan an email today – we stay connected and watched the sad demise of the Burlington Breast Cancer group – and wondered what that lucky group did with all the money they made from the sale of a property on Brant Street – so unusual for a nonprofit to buy property …. still raisin’ hell … and smilin’ … good to be in your prayers.
Big hug, Pat
Pat.. so sorry to hear that you have reason to get ‘back in the ring’! But are very thankful that you will. You have made a difference in the cancer field in Canada and as you say there is still much to be done!
Hi Judy – you are so thoughtful to send this note, and for the lovely encouragements! I’m doing well, enjoying time with my daughter while in treatment, as she completes her residency in rural family medicine and palliative care here in Owen Sound.
Thank you for taking time to connect and wishing you well.
Kind regards,
Pat
Interesting to hear about PTSD in cancer. I have to wonder how prevalent it is in diseases that have never received additional funding and attention from government like inflammatory arthritis! It has to be through the roof!
As the new CEO of the Canadian Partnership Against Cancer (CPAC) , and a former cancer patient, I applaud your demand that we as a country do more to ensure the patient is the voice that drives all of us in the cancer care systems acorss Canada to push for change. Our recently released Patient Experience report you note ,is not only the first of its kind but contains in it our call to action, that will drive our and our partners’ work across Canada to deliver results. you are right that PTSD is not well understood in the cancer journey and more must and will be done to deliver timely and tailored care through our call to action. Your advocacy is valued and necessary, thank you for staying in the fight. There is a seat at the remarkable CPAC patient and family advisor table for you, anytime.
Great to hear from you Cynthia Morton. Your invitation is most welcomed – please sign me up.
Next year, maybe we can report back to Healthy Debate on our progress.
Kind regards,
Pat Kelly
Way to go!
Thank you Lynn!
That is why I admire you!!!! Great article! You are awesome
Ola my friend – always encouraging to see your work in Latin America and now in the US – many lessons to be learned from low-resource countries who have established grassroots networks for cancer control – hope to see you soon.
Well done, Pat.
A very good article.
❤️
Thank you to a very good friend and an exellent advocate for end of life care and kindness – you and Greg led the way in supporitve care when you founded Wellwood in Hamilton.
Outstanding op-ed.
Len, you’ve always been a favorite among the many oncologists who stepped up to encourage patients as advocates. Thank you for the enduring support and encoruagement … Pat
You rock! Pat, you are what makes the world , not just the cancer world, a better place! Your tireless and creative, not to mention impassioned advocacy changed the world for all of us and I can’t imagine what else is in store!
Theresa Marie, as the former CEO of Cancer Care Nova Scotia, you stood with advocates every step of the way, opening doors that had historically been closed, opening minds that long considered advocates as angry patients to be avoided, and championing the person-centered model of healthcare in your home province and across Canada. Where others pointed out the flaws (and I have plenty) and criticized the efforts, you always encouraged, always were willing to put your own career on the line and step into the arena.
You’ve reminded me of a favorite quote by Theodore Roosevelt, from The Man in the Arena speech:
“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”
Hi Pat,
Just read this one – catching up more after “Bad Patient.” Excellent article.
All to true.