Turning Cancer Struggles into Something Helpful for Other Cancer Patients

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.

 http://news.gov.mb.ca/news/index.html?item=19814

http://www.cancercare.mb.ca/home/patients_and_family/cancer_patient_journey/ucc_helpline/

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.

Holiday Season Ushered in With New Health Challenges

The old adage says, “No news is good news”. In almost two months since my last blog, there was no news in my life after cancer, thus nothing to write about. I was living a normal pre-cancer life--busy with work, family and volunteer obligations. It has been nearly four years of living without evidence of disease, so life has been good.

Then two health related events happened one week after another this past month.

During my regular cancer quarterly monitoring appointment, my family doctor checked my blood pressure. For the first time in my life, it was unusually high. She sent me home with instructions to check it regularly for two weeks to see if the pressure would lower. This was not the case.

So, in mid December, I was put on high blood pressure medication. We are not sure if the high blood pressure is hereditary (my father had and sister has high blood pressure), or if it is being caused by my anxious personality. So I have a new health issue to manage, which is not difficult with medication and my continued regime of proper diet, regular exercise, and healthy weight.

But then there were unusual lab results that came after my last quarterly check-up. Another surprise, and one that is more difficult to manage.

I have been diagnosed with hypoparathyroidism--a rare and permanent condition where my body is secreting abnormally low levels of parathyroid hormone, resulting in low levels of calcium and high levels of phosphorus in my body. It can be hereditary, can occur if the thyroid is damaged in surgery, or can arise with an endocrine condition. None of these apply to me, so we are not sure how I acquired it.

My breast cancer nurse educator tells me it is likely a side effect from my chemotherapy and radiation, as the four tiny parathyroid glands lie behind the thyroid gland in the neck. The thyroid gland area is at risk whenever breast cancer patients undergo chemotherapy and radiation. She says that the condition can develop long after active cancer treatment is completed.

I do not know how long I have had hypoparathyroidism. I suspect it has been for a few months. There have been several clues that it may have been developing. I chalked it up to being in my 50’s and living with an aging body.

These last few months, I have had increased low-level chronic pain in my legs, feet, hips, and lower back. There have been terrible charley horses (always at night) in my legs, feet and hands that remind me of when I was calcium deficient when pregnant. (These side effects can also occur while on Tamoxifen, my chemo maintenance medication, so I thought it was the trigger). My doctor put me on anti-inflammatory medication, but I had to go off of it because of my high blood pressure.

My bones ache at times. Some nights I hardly sleep, as pain will wake me up several times. Fatigue is now part of my daily life. I have developed extremely dry and flaky skin and now react to skin care products I have used for some time. My nails are so soft that they snag and tear.

At my last eye appointment, my optometrist was concerned with the results of some of the tests and is monitoring my eyes more carefully. He was perplexed by the test results, which will see me undergo retesting early next month. He has been monitoring my eyes because of the risk of cataracts from chemotherapy, and now will have to monitor my eyes with hypoparathyroidism as it can cause eyesight problems.

If left unchecked additional problems like impaired kidney function, heart issues, and osteoporosis can occur with hypoparathyroidism.

My family doctor is monitoring this condition with quarterly blood tests. I will be monitored for the rest of my life. Generally, hypoparathyroidism can be stabilized with consumption of calcium-laden foods, calcium supplements, and high doses of Vitamin D. If the parathyroid hormone levels continue to be low with my next tests in February, I will then be referred to an endocrinologist for an in-depth assessment and further treatment.

In the meantime, I have to learn how to manage this new health issue. It confuses me, so I will see my breast cancer nutritionist early in the New Year to determine what foods I can eat with this condition. Foods that are high in calcium (particularly dairy) are also high in phosphorus. I do not know how to lower phosphorus levels in my body while boosting my calcium levels. It is further complicated because I’m lactose intolerant and I avoid soy based foods because of their natural estrogens, which can be an issue with an estrogen positive breast cancer history. I am hoping she has some answers.

It is a setback as I work through these new health challenges. At times I feel discouraged, but I refuse to give in. Instead, I shift my thinking and remember to be grateful to have had almost four years added to my life thus far because of cancer treatments. I continue to fight daily with Strength, Courage, and Determination.