Tag / cancer treatment

by Jacqueline Chartier

Cancer Care is on Life Support While Patients Languish

For cancer patients in Alberta, and indeed for the entire cancer community, there’s a looming sense of dread—a feeling that the status quo is unsustainable and the system that provides care to us could soon collapse. 

The backlog of patients, due for the most part to the province’s shortage of oncologists, has become increasingly dire. An internal report that was presented to Alberta Health Services this May found that the number of new cancer referrals grew by 18 per cent between 2018 and 2023. Furthermore, the report revealed the number of patients seen outside the Alberta Health four-week target jumped by nearly 70 per cent over the last five years.

As the number of new cancer patients continues to outpace the number of new oncologists in the province, wait times are going up. Five years ago, patients requiring medical oncology care waited an average of 6.3 weeks for their first consult. In the first quarter of this year, the average wait time for it was 10.3 weeks. There have been several cases recently of Alberta patients dying before they could be formally assessed by a medical oncologist or start a treatment plan.

Steven Wong of Edmonton died in mid-July, leaving his wife without her husband, their three young boys without their father and a family without faith in Alberta’s health care system. Not once did Wong or his wife, Cici Nguyen, see or speak to a medical oncologist — doctors who specialize in the diagnosis and treatment of cancer — before his death.

The new Arthur J.E.Child Comprehensive Cancer Centre in Calgary sits unused and is scheduled to open later this year. With a shortage of cancer specialists the magnificent building alone may not be enough.

Athletic at age 41, Wong was a project manager for a real estate investment company and busy dad of three — he was a non-smoker and non-drinker and was healthy, as far as he knew. However, earlier this year a diagnosis of gastric cancer changed everything. An ER visit’s endoscopy had shocking news. It found a large stomach tumour. Wong’s tumour took him from heartburn to “inoperable” in just weeks. Referrals to the Cross Cancer Institute timed out as complications set in. Gastric bleeding. Perforation. A collapsed lung. Infection.

The stark reality is that Alberta has an excellent system of cancer care, but it’s functioning with tremendously limited resources. With resources as scare and labour intensive as they are, the triage of oncology is the tyranny of the healthiest, the earliest diagnosed, with priority going to the ones most likely to benefit in a life-saving way. Wong’s cancer was advanced, and almost surely not curable.

CiCi Nguyen is certain her husband would have died with, or without, the timely help of a medical oncologist. But she insists it’s just not right Alberta’s medical system failed to give Steven Wong the opportunity to prolong his life. “We never heard from the actual oncologist themselves or anyone from the Cross Cancer Institute explaining to us why we couldn’t see somebody,” said Nguyen. “He didn’t deserve the way he was treated at the end.”

As with many cancer survivors and cancer care specialists, I’m furious as well as demoralized— with much of my growing frustration directed at our provincial government. A report presented to Alberta Health Services CEO Athana Mentzelopoulos from Cancer Care Alberta confirmed a widening gap between cancer referral and cancer treatment in the province since the UCP government took power. Waits for oncology and treatment have surged over the past seven years, while the number of new cancer patients has significantly increased.

Dr. Alika Lafontaine, a former president of the Canadian Medical Association, has voiced his concerns regarding healthcare in Alberta.

The Cancer Care Alberta study points to several major factors affecting Alberta’s capacity for cancer treatment, one is that as medical science has advanced there is a growing complexity and chronicity of cancer care. However, the other factors cited are largely the responsibility of the provincial government, under their control is workforce and manpower as well as capital infrastructure and equipment.

The report’s author, Dr. Dean Ruether, medical director of community oncology in Alberta, said the province continues to struggle with wait times that are unacceptable and getting worse. “Physicians continue to advocate for their patients, express concerns over the delays in getting patients into our system and to treatment and are sharing their own distress at watching this problem grow,” he stated. Of course, patient complaints about delays are increasing, many are expressing their outrage to oncologists, to Alberta Health and the health ministry,

I wasn’t surprised when Dr. Alika Lafontaine, a former president of the Canadian Medical Association, took to social medica to stress just how serious the overall healthcare crisis has become.  “As a rural specialist who has been in Northern Alberta for the past 12 years, I can compare the state of healthcare today with rural healthcare when I first arrived here,” he wrote. 

“Capacity just wasn’t an issue in 2011. If an emergency came in, we handled it. There was no triaging of resources or placing patients in doom loops where they cycled round and round as they were promised care but never received it. It is clear we do not have enough skilled providers in the health system to accommodate demand. If more professionals leave to other places—private insurance, private care, another province, the US, or leave medicine entirely—health access will disappear.”  

by Jacqueline Chartier

When the Poppies Bloom

You are the masterpiece, and your life is the canvas. Express yourself boldly, Live and breathe in full colour, and make every mark matter. It’s never too late to imbibe all you create with clear intention and kindness and enjoy the rewards of your courage.

Lisa Azarmi

I believe that nearly all cancer patients arrive at a stage in their difficult journey that’s like reaching the peak of a mountain. When this occurs, we have an epiphany, a feeling of conquering something we though was insurmountable.

For some cancer patients this might mean ringing the bell after chemotherapy or radiation treatment has finished, for others it might be turning the corner after several months of unbearable physical or emotional suffering. I’ll always remember my moment of cancer epiphany, it happened on July 1, 2012.

First, I reached an unparalleled low physically and emotionally during the spring of 2012, I was five months into my cancer journey. My path had been relentless, brutal and unlike anything I’d ever had to face before. When the spring finally materialized after a seemingly endless winter, I’d already had two major abdominal surgeries as well as four chemotherapy infusions. Even through fatigue and nausea, I remember watching a pair of finches build their nest in my yard.

In May I learned I was facing a potentially life-threatening complication due to my rigorous cancer treatments. Bowel blockages occur at an alarming rate for people diagnosed with gynecologic cancers— although when I was an innocent newcomer to the realm of ovarian cancer, I still had little idea how common these obstructions are in patients with the disease. For a long time, I thought my symptoms of severe nausea and abdominal discomfort were due to the chemotherapy drugs alone and that no other medical issues were at play.

Eventually, vomiting and in pain, I was transported to the emergency room through early rush hour traffic. It was a bright May morning when I entered the doors of Calgary’s largest medical centre and was admitted suffering from a bowel blockage. With hindsight, I realize that nothing could have prepared me for the invasive medical procedures that I was about to endure in the coming weeks or for the length of my hospitalization. I acknowledge that at first, I literally wanted to die rather than deal with what was happening. 

Seven agonizing weeks would elapse in the hospital, during this period I received virtually all my nutrition through a peripherally inserted central catheter (PICC or PIC line). A decision was finally made to operate a third time, and on June 18, 2012, intestinal surgery was skillfully performed. When I awoke in the recovery room, I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. 

The primary cause had been extensive scar tissue from my previous operations, a couple of bowel resections had to be performed. With this intervention, my stomach was expected to empty normally into to my small intestine again. Most of all, I was comforted and reassured by the fact that, although there had been scarring and adhesion, my cancer had not visibly metastasized to other regions of my body.

My discharge from the hospital ultimately took place on a balmy July afternoon; the clothes I had worn nearly two months earlier felt hot and loose fitting. I was so weak from my ordeal that I struggled to walk just 10 or 20 metres, but I was in awe as I observed how the seasons had changed and nearly everything had been transformed. I can still remember the blissful car ride home and my sense of anticipation during that short, but very emancipating, commute. Even the fresh air filling my lungs was like a breath of freedom.

Upon arriving at the small bungalow where I live, something magical occurred. As my eyes surveyed the backyard, the unexpected sight of poppies in full bloom completely overwhelmed me. It was as if I were seeing them for the first time. Now, each year, I remain inspired by their exquisiteness—even if my cancer returns I’m encouraged by the realization that their brilliant orange petals and intricately designed purple centres will never appear ordinary to me again. 

by Jacqueline Chartier

A Cancer Patient’s Guide to That Awkward Age

A cancer patient’s age can influence their overall prognosis, but it’s also known to affect many diverse aspects of their cancer journey. I was just 46 when I was diagnosed with both uterine and ovarian cancer, however the median age of diagnosis in Canada is about 63. I now realize that age is one important factor in how the medical community perceives your risk.

Obviously my gynecologist was concerned when he diagnosed me with endometriosis and a medium sized mass on my right ovary. He wanted to perform surgery, but he still believed the likelihood was for my condition to be benign. About a week following my surgery, the pathology report ultimately revealed the presence of adenocarcinoma in both my uterus and ovary. Meanwhile, my gynecologist acknowledged that he was shocked because the disease is relatively infrequent in women under fifty. 

On my first few visits to the cancer centre, I became even more acutely aware of my age and its implications. Now it was starting to feel like both a blessing and a curse, an advantage, and a disadvantage. A cancer diagnosis has the power to impact nearly every aspect of your life; you feel it physically, emotionally, socially, and financially. Studies have indicated that younger patients usually have a physical advantage, but they may possibly experience a disadvantage in the other areas.

When I attended my appointments with my oncologist at the Tom Baker Cancer Centre, I noticed that I was surrounded by women in my own fortysomething age range. However, many of them were not patients themselves, they were there most often as caregivers and were accompanying a cancer stricken elderly parent. Sometimes as I walked in with my support person, my healthy and totally independent 72-year-old mother, I would feel bitter and confused at our obvious role reversal.

Even so, a part of me remained grateful that I was younger than most patients. I was terrified because I realized that ovarian cancer has a dismal five-year survival rate, but at the same time I was also aware that a woman’s age plus the stage of her cancer are usually the two most significant factors in determining her prognosis. I quickly discovered that oncologists will perhaps approve different types of treatment depending on a patient’s age. They are sometimes able to approach cancer treatment more aggressively if, for example, a patient is 46 rather than 66.

Following my first examination at the Tom Baker Cancer Centre, my mother and I were ushered into one of the conference rooms to meet with my gynecologic oncologist, he had with him several junior doctors and residents. The seriousness of my situation began to register, as I looked across the table at four of five white-coated medical professionals. Suddenly I realized that my cancer care team had made a decision and they were going to go all in.

Sure enough, they explained that they wanted me to undergo surgery as soon as possible. This news was overwhelming, especially since I was still recovering from a total abdominal hysterectomy that I had undergone three weeks earlier. “I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurted out. “You’re not dying, I’ll inform you if you are dying,” a firm voice immediately responded. These rational words jolted me back to reality, and before I left, I signed a consent form for a laparotomy—a specialized procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

At our meeting my oncologist had been unambiguous that his treatment goal was a “cure” or full remission. Meanwhile, the most important thing I could do was to have faith— if the medical professionals believed I could become cancer free then this was an outcome worth striving for. For a year I endured what seemed like an endless hell of major abdominal surgeries and chemotherapy, at one point I even required additional surgery to repair a bowel obstruction. My treatments and hospitalizations were so rigorous that I don’t know if I could withstand them again now. Looking back a decade later, I now credit my relative youth as a major advantage in the agonizing struggle to destroy my cancer.

Even so, I continue to believe that I’m at a kind of messy middle range for cancer patients. In many instances, people in their forties or fifties experience the financial hardship or toxicity of a cancer diagnosis more severely. Those who are younger don’t have as many financial responsibilities and are usually able to rely on their parents or others for financial support. Obviously, most cancer patients in my age group are at the stage of their lives when they’re in the workforce and usually mid to late career. They’re not retired so they mourn the loss of income and the loss of social status if they must exit the workforce or take long-term leave. 

Finally, I’ve observed a gap in psychosocial support for this age range. There are a fair number of young adult cancer support groups for patients under 35, and there is often specialized support designed for seniors over 65. Those of us who are middle-aged when cancer strikes tend to be left more on our own, especially when active treatment is finished, and we are considered cancer-free or in remission. As someone with first-hand experience I know that cancer survivorship is a lifelong journey that doesn’t stop when surgery or chemotherapy treatment is over.

by Jacqueline Chartier

After a Cancer Diagnosis: Five Things You Need to Know

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Allow yourself time to grieve.

Allow yourself to cry, to feel numb, to be angry, or to feel however you’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. Understandably, I grieved after my father died, however I was surprised to find myself experiencing similar feelings when I was diagnosed with ovarian cancer. I discovered firsthand that the loss that triggers grief isn’t always physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give yourself time to experience your loss in your own way. Also understand that during life’s most difficult times it’s important to make a commitment to take care of yourself emotionally, spiritually and physically.

Don’t let fear consume you.

Fear is one of my constant companions on this cancer journey, for over seven years now it has attempted to overcome me and prevent me from living the life that I want. Naturally, when I was first diagnosed with cancer and was undergoing months of treatment some extremely unsettling questions raced through my mind. Will the recommended treatment be successful or will I die? Will undergoing another major surgery followed by chemotherapy be too agonizing and unbearable? Now that my oncologist has informed me that I’m in remission, it’s the fear of my cancer recurring that I have to cope with on a daily basis. Practicing mindfulness helps me stay in the present moment and to accept that I can’t control certain outcomes. I’ve ultimately learned that faith can be an important factor in dealing with fear. I’m not religious, but like many I’ve chosen to build a life on faith—especially faith in the power of good to triumph over evil in this world.

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It’s ultimately your cancer journey.

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It must be acknowledged that cancer is extremely personal, so our response tends to be personal as well. With these facts in mind, I argue that no one has the right to tell me how to react emotionally to my cancer or to lecture me about how I should live my life after a diagnosis. For example, early in my cancer journey I was confronted by a couple of individuals who insinuated that I should not allow my illness to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a terrible waste of all that I have been through.

You never know how strong you are.

When you are diagnosed with cancer you will have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me is that I’m often in situations where I feel a sense of power, combined with courage and self-assurance. It’s as if I’m standing in life’s Category 5 hurricane and remaining resolute, steadfast and unbroken. I certainly don’t aspire to become a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But still, I’ve discovered inner qualities and personal strengths I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering.

Don’t be afraid to ask for help.

There’s a familiar proverb that states that it takes a village to raise a child. I think that this can be modified to assert that it takes a village to properly support a cancer patient. When I was diagnosed with ovarian cancer seven years ago, I was suddenly faced with a whole new array of complex needs. It was sometimes necessary, or in my best interest, to accept the assistance of my inner circle of friends and family members. For example, my mom was my primary caregiver following each of my three major surgeries. She would also accompany me to and from my appointments at the Tom Baker Centre and remain with me when they administered chemotherapy. Today most cancer patients, including myself, have access to social workers, psychologists, dieticians and other skilled professionals. Treating the whole person and recognizing that each patient has unique issues and needs have become firmly entrenched and are part of the philosophy of cancer care.

by Jacqueline Chartier

Getting Organized: Learning to Manage Your Cancer Journey

 

IMG_0117When my gynecologist informed me that I had cancer almost three and half years ago the last thing on my mind was trying to manage the absolute chaos that my life had suddenly become. First, I was numb and in shock to learn that I had gynecological cancer at a fairly advanced stage. Once the dust had settled I found myself experiencing intense anger and fear, I was actually astonished to learn that emotions so strong existed. My life seemed to be spinning violently out of control and there appeared to be little I could do to stop this process or to regain a sense of stability. It was tempting to sit back and let things happen to me, and to believe that events were completely beyond my influence.

Despite my anxiety, I immediately realized that successful cancer treatment would require me to be an active participant, I would need to schedule and attend literally dozens of medical appointments. At the same time I would have to deal with the bureaucracy of the health-care system on an almost daily basis. Of course, I knew I could depend on family members to assist me when I was hospitalized or completely exhausted. But by and large I established that it was my cancer, my body and my complex journey to navigate.

Following my diagnosis I was often overwhelmed with the countless tasks that I was required to perform and with the hurried pace at which things were happening, but I’ve gradually devised my own system that enables me to be more organized. Over time I’ve learned to confront the practical life changes associated with cancer treatment, I’m now able to approach them with more efficiency and less hassle.

Keeping a Record of Your Treatment on Paper

 

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I strongly recommend keeping a personal record of your cancer treatment, including surgeries that are performed and any chemotherapy or radiotherapy that is administered. I have chosen to use a binder and I suggest the following other essential stationery supplies:

1. Page protectors (single page and multipage)
2. A hole punch
3. A stapler

I’ve used a combination of chronological order and straightforward categories to organize my documents. In case you’re wondering what needs to be in your cancer treatment diary, here is some of the key information that I’ve chosen to include in mine:

  • Basic documentation concerning my hospitalizations and surgeries
  • Complete pathology reports
  • A timetable of appointments, the specific drugs that I was given and other essential details regarding my chemotherapy
  • Physician progress notes summarizing my appointments at the Tom Baker Cancer Centre outpatient clinic

Using a Computer to Bring Your Journey Together

 

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Now that personal computers are firmly ingrained in our culture and nearly everyone is computer literate you’ll want to take advantage of this technology to make your cancer journey easier and more organized. As with traditional filing, you’ll require an organized system for letters, personal notes, essays and other word processing files. It’s best to create a classification system that makes sense to you and that allows you to locate files and documents quickly on your computer. Of course the Internet is invaluable for cancer patients wishing to learn more about their disease, but it’s essential to ascertain the difference between reliable or accredited sites and those that contain inaccurate, and sometimes even dangerous, information.

Some cancer patients have the advantage of accessing their official medical records online. Those of us being treated for cancer in Alberta unfortunately do not have access to these types of databases; my hope is that we might in the near future. I was excited to learn that there are plans to start an online portal this year that will give Albertan’s access to their prescriptions. Meanwhile, the intention is to add other medical information to the online system over time. In the interim I have to be content with requesting information from my medical records directly from the Tom Baker Centre and making sure each request is in writing. This can be a time consuming and tedious process, but it’s my judgment that the aggravation is worth it.

Ultimately the completeness or comprehensiveness of your medical information and the ease with which you can obtain medical records will vary depending on where in Canada you are receiving treatment. There is little doubt that receiving your cancer treatment in the United States or in a private health-care system may offer some advantages in terms of obtaining complete documentation. There is considerable bureaucracy and more overall effort involved by patients in the public system that I am a part of in Calgary, Alberta. We have to advocate a great deal for ourselves in terms of getting the information we need, and such pursuits can be difficult for a cancer patient when they are receiving chemotherapy or other active treatment. Personally I admit my medical appointments and diagnostic tests have slowed down substantially now that I’m in remission.

by Jacqueline Chartier

The Top Six Things Not to Say to Someone With Cancer

When a friend or family member is diagnosed with cancer it’s sometimes difficult to find the right words or to be sure that you are doing the appropriate things. In this blog post I’ve chosen to address some of the most common mistakes and I make specific suggestions about how you can communicate better with someone who is going through a cancer journey.

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Always permit a cancer patient to control how much medical information he or she wishes to share with you.

Remember that some patients are more private than others, so don’t pry—only discuss these matters if the patient chooses to bring them up. As a general rule don’t ask detailed questions about the diagnosis or treatment plan. Examples of inappropriate questions might include: “How many chemo sessions do you have?” and “What kind of surgery does your oncologist recommend?” Of course caregivers and close family members are almost always privy to this information. If you are in such a position, I strongly advise you not to divulge intimate details about the condition of your husband, wife, adult son or adult daughter without their specific consent. For instance, as a caregiver you probably have friends or your own support group and you may need to take some time off work. Still, it’s almost never necessary or appropriate to inform your best friend or your boss of exactly how much weight your loved one has lost or the name of the chemotherapy drugs they’ve been prescribed!

Try not to make your offers of assistance too vague.

“Can I do anything to help you?” Your overall intentions for asking a cancer patient this question are likely noble and your heart is in the right place. However, the phrasing of this question is frequently too vague or broad. The person undergoing cancer treatment is probably too overwhelmed to think of something specific, furthermore they don’t want to feel like a burden. Instead, it’s recommended that you ask if you can perform some task in particular for the person. “May I pick up some groceries for you?” or “I’d like to make you dinner tomorrow night.” are good examples of things you might want to say. Even scheduling routine appointments is difficult for an individual facing surgery or chemotherapy, so it might also be fitting to take the initiative by offering to make some telephone calls or send some e-mail messages.

Don’t give a cancer patient health advice, especially if you have never had cancer.

118184-400x265-Dandelion_Facts“Healthy people should never give cancer patients health advice,” physician and cancer survivor, Nikhil Joshi, argued in a recent Globe and Mail interview. “There’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating you did something to make this happen to you,” he said. I firmly agree with Joshi’s statement. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. However, if you cause someone with cancer to absorb blame and feel shame it will almost certainly make matters worse. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

Remember every cancer journey is unique physically, psychologically and spiritually.

My situation may remind you of someone else, but telling me a story about a family member or friend who has or had cancer is simply irrelevant, and it’s especially a bad idea if it’s a fatal story. Modern medicine has essentially proven that everyone’s cancer experience is unique, even individuals with the same type, stage and grade of cancer can have radically different outcomes. Telling me about your aunt Lisa’s current third round of chemo for colon cancer won’t help me to process my diagnosis or make decisions about my own cancer treatment.

Don’t send a cancer patient newspaper articles about cancer that you’ve read or give them a basket with holistic cancer remedies in it.

If I want information regarding cancer or cancer treatment, I’ll ask for it. In the months following my cancer diagnosis I was inundated with information and advice from a medical team. Consequently, the articles from newspapers, magazines or online publications that I received were annoying. For the most part these pieces were irrelevant and unnecessary. When some acquaintances sent me ginger and dandelion root, two common homeopathic therapies for cancer, I didn’t bother to explain to them that these items are specifically mentioned on a list oncologists give to their patients. Ginger and dandelion root do not combine well with many traditional chemotherapy drugs, and therefore patients should refrain from using them during treatment.

Don’t tell someone with cancer that everything will be the same again or that everything will workout fine.

Cancer can be a terrifying experience and a diagnosis of this disease is usually a turning point that will alter a person’s life forever. I hate when people try to deny this fact or minimize it by giving me false reassurance. The truth is I don’t know if I’m going to be fine, you don’t know if I’m going to be fine, even my oncologist doesn’t know for sure if I’m going to be fine. Instead, I feel comforted when people use phrases like “I believe in you.” or “I’m pulling for you.”

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