Reflecting on the last 16 months of being a breast cancer patient, I can say that the disease has changed my life in ways I had never imagined. Once one has lived with cancer, fought it, and won, there is little else in life that can scare you. The experience of being face-to-face with death, and living through it, makes rising every morning a sacred gift. As a cancer survivor now in remission, I am grateful for my life.

The experience has also gifted me with boldness that I did not possess pre-cancer. This boldness is evolving to being a patient advocate to speak on behalf of other cancer patients who have no voice in navigating the medical system that treats them.

As a cancer patient, one receives numerous medical pamphlets that advise you to be the lead member of your cancer care team. Oncology doctors and nurses look to their patients for information and clues as to how they are handling their treatment. The saying: “they don’t know what you don’t know unless you tell them,” applies throughout all phases of cancer treatment.

I took ownership of being the team leader for my care, led my medical team (some were assigned to me, some where chosen by me) for the duration of treatment, and continue to take the lead in my post treatment follow-up appointments.

When I was diagnosed, I was doggedly determined to fight this dreadful disease proactively so that I could live. My daily attitude was a defensive one, with a mantra of “cancer, how dare you attack me.” Visually, my companion image was that of a pair of boxing gloves that I imagined wearing to knock down attacking cancer cells. The mantra, the boxing glove image, and the advice from the patient pamphlets to lead my medical team formed my fighting attitude.

However, many other cancer patients do not take this approach, as they do not know how to maneuver through the complex health care system.

They do not know what questions to ask, or what kind of information they need to share with their medical caregivers. Learned medical professionals who are treating them may intimidate them. They may have an intellectual disability. They may be very young or elderly. They may not have a command of English, which is the language used in patient communications. Because of these circumstances, many cancer patients feel they have no voice in raising their concerns with medical staff that care for them.

Cancer has been the most difficult life challenge I have ever had to overcome. Even though I was proactive in managing my disease and its treatment, there were times when I felt I had no voice in how my illness was being handled. The cancer treatment organization was exemplary in my care; emergency wards in local hospitals were not.


Be the Change You Want to See in The World

Inspired by Mahatma Gandhi’s expression: “You must be the change you want to see in the world,” the cancer experience has given me the opportunity to be a voice of change that cancer patients need to further improve their medical care. Herein are the opportunity and the challenge for me--to be the change I want to see in the world, at least in the local medical world of cancer treatment.

Those who know me will likely say that I am an aggressive female—driven, tenacious, stubborn, proactive, perfectionistic, passionate, articulate, and one who loves to conquer a challenge. These qualities are ones that are useful to invoke change in any forum.

As a former news reporter early in my career, possessing an inquiring mind was an important part of the job. When my career evolved to corporate public relations, I honed new skills as a problem solver. These two traits have served me well as a cancer patient in managing my treatment program in concert with an array of medical caregivers. These two traits are now guiding me in raising cancer patient concerns with medical professionals who treat them.

It has been said that cancer patients may not die from the disease, but from the complications that come from their treatment. This truism was part of my world when six times in eight months, I suffered life threatening cancer treatment complications.

There were several visits to hospital emergency wards during my cancer care. These visits were the scariest part of the treatment. Sitting in emergency as an acutely ill patient, I knew that I was being exposed to a plethora of germs all around me from other sick people in emergency. It was terrifying to know that I had virtually no immunity to fight infection due to low white blood counts, and that I was in a high risk, high contamination environment that offered no “exposure” protection for me.

One of the chemotherapy complications (neutropenia-fever, infection, and low white cell counts) resulted in a prolonged stay in emergency of 11 hours. My doctors told me more than once that when I was neutropenic, I should be seen within an hour of attending emergency, and that I should be masked and isolated from the general population. With my BN sister at my side monitoring my symptoms, we sat in emergency hoping and praying that my infection would not turn into sepsis (severe infection that spreads via the bloodstream), which could kill me if it was not treated promptly.

Because of the mishandling of my case in emergency, my cancer social worker encouraged me through the process of lodging a complaint with the cancer care treatment organization’s patient representative. In turn, the complaint was raised with the attended hospital’s patient representative.

I attended meetings with both parties to speak to the severity of the complaint. During one of the meetings, it came as a great surprise to my sister and I, to learn that local hospitals lacked a chemotherapy patient protocol when cancer patients come to emergency with chemotherapy complications. As “the voice” for other cancer patients in raising this concern, I am delighted to say that both medical organizations have spent the last seven months addressing and resolving the issues that arose with my case.

The two organizations have worked to develop an emergency treatment protocol for neutropenic chemotherapy patients at the hospital I attended. Chemo patients will now be assured that they will no longer have to endure the fear of possible sepsis as they wait in that hospital’s emergency ward. In time, it is hoped that the attended hospital’s (pilot) protocol will be refined and shared with other local hospitals, so that there is a consistency in the medical system in how hospitals handle chemotherapy patients when they come to emergency.

Recently, my social worker advised me that the neutropenia protocol at the hospital I attended has been enacted. She noted that one of her other breast cancer patients who had neutropenic complications in the last few weeks, went to the hospital I attended to be seen in emergency. She was triaged quickly, isolated, and seen within 15 minutes of arriving. I was overjoyed to hear this great news. Progress is being made to help other chemo patients in emergency in this one hospital. It is rewarding to know that I could be a positive “voice” of change for other cancer patients.

Both patient representatives and my doctor told me that I was lucky to survive four episodes of neutropenia. Out of my suffering came goodness. That’s grace.


Be the Change Continues

As a result of launching my complaint and having it resolved, I have been asked by the executive of the cancer treatment organization to provide feedback to them about my care with their organization and the healthcare system. The input will be used to make improvements in cancer patient care.

In addition to this, I have been asked to sit as a patient representative on a committee of medical professionals associated with the attended hospital, to provide feedback on improving patient care.

While I was undergoing treatment, there was a parallel in spiritual care neglect from my church’s ministry team. Facing potential death during that time, with no one to speak to on spiritual concerns, I sought console from the spiritual counselor at the cancer treatment organization. We have had many conversations about life and death, and have a good rapport between us. At her request, I will now be assisting with developing information for clergy who are seeking guidance in how to minister to cancer patients.

It appears that patient advocacy is my newest volunteer calling, and is one that I hope will help countless cancer patients and their families. This poem, read at a cancer patient workshop I recently attended, sums up how the disease is now becoming a positive force in my life:

“Until one is committed there is always hesitancy,
The chance to draw back, always ineffectiveness,
Concerning all acts of initiative and creation,
There is one elementary truth,
The ignorance of which kills countless ideas and splendid plans:
The moment one definitely commits oneself, then providence moves too.
All sorts of things occur to help that would never otherwise have occurred.
A whole stream of events issues from the decision,
Raising to one’s favour all manner of unforeseen accidents and meetings
And material assistance which no one could have dreamed
Would come their way
Whatever you can do, or dream you can, begin it.
Boldness has genius, power, and magic in it.”

Author Unknown

My cancer remission travels are taking me in new directions with a renewed sense of purpose and boldness. I will continue to advocate and be the voice of change for other cancer patients with Strength, Courage, and Determination.