As a cancer patient, I have a lot of time to think about the life I’ve lived and the present. I don’t think a lot about the life that is to come.
I’ve chosen the route of walking with my eyes wide open, rather than avoiding the realities of living with cancer. I’ve made many observations in how the outside world treats someone with cancer. It has also forced me to look into my internal world in living with this disease.
There have been many lessons learned, and there are many more still to come.
Connections, Reconnections, and Disconnections
The cancer world is one of connecting with people in a deeper way, reconnecting with people who have been distant, and disconnecting with people who walk out of your life because they can’t cope with you having cancer.
Connections with others ensure that I don’t walk alone. When people know you have cancer, they exhibit a “gentle kindness” when they are in your company. Family, friends, and a host of medical professionals walk alongside me in this journey so that I am never alone.
Cancer patients don’t want people around them to stop calling them, to be afraid to talk with them about their illness, or to stay away because they don’t know what to say. Cancer patients want people around us to stay in touch, tell us about their days, share their lives with us, and just spend time with us. It’s that simple.
Cancer patients don’t want pity; we just want people around us to understand what we’re dealing with. We may not always be ourselves, as you knew us prior to being sick. If we’re not “ourselves,” it’s not because of the people around us, its more likely that we don’t feel well because of our treatments.
The personal connection I have made in this cancer experience is that I can no longer be “Superwoman.” She died with my cancer diagnosis. A new super hero is being built as I journey through fighting this disease. She will likely have a hearty dose of resiliency and compassion and other positive traits that are being acquired as part of living with cancer.
Medical Caregivers
The medical staff working in the cancer treatment ward is fabulous. They are kind, caring, compassionate, attentive, friendly, upbeat and understanding. Chemo anxiety levels during treatments are lowered because of them. You quickly learn to dispel your fear of doctors and nurses because there are so many of them you’ll encounter in your cancer journey.
Something I read early on about cancer said that the patient should see themselves as the “captain” of the medical team treating them, as you are the person who is closest to how your body responds to treatment. The medical care providers look to us as cancer patients to give them clues they need to help treat us. This pro-active patient stance is comforting.
Emergency staffs treating chemo patients always feel terrible when a cancer patient has had to wait several hours through the night or on a weekend to be seen due to bed shortages. Emergency rooms are places chemo patients dread because of the risk of exposure to sick people who can make cancer patients sicker due to their lowered immunity.
Cancer Time and the Tick-Tock Clock
Cancer patients don’t live their lives too distantly into the future. We are day-by-day people. We deal with the “here and now” in our worlds. Many of us would tell you that a cancer diagnosis and the fight to wellness are overwhelming. We learn to cope by compartmentalizing what we need to deal with as it arises, and we block out the rest.
I’m 14 years away from official retirement. Retirement is not something I think about because I may never see it. I’m learning how to live only in the present because the future is far away.
Boredom has been my unwanted sidekick in this cancer journey. It’s taught me that I don’t do well with idle time on my hands. Daytime TV is terrible and not a boredom buster.
I’ve always been fiercely independent as a full time working mother who made multi-tasking a fine art. I’m not very good at knowing what I need and asking for help. Cancer is teaching me that I have to be dependent on others, and on their schedules.
Life goes on relatively normally for family and friends around you as a cancer patient. As the patient, there is “no normal” in living with cancer. One day when the treatments are finished I too may have a “normal life.” However, it will be a “new normal” as cancer patients’ lives are permanently changed once they are diagnosed with the disease.
Restlessness is part of the cancer patient’s experience. You’re restless because you’re bored. You’re restless because cancer is always on your mind and you look for distractions to stop thinking about it. You’re restless because some of the chemotherapy drugs have steroids in them and they make you hyper.
Nature’s Restorative Power
I am being pulled to nature to find peace. I particularly like the quiet of rural areas, as they are a reminder of my past.
Bodies of water draw me to rest, as they’ve always had a calming effect throughout my life. As a young child growing up in rural Manitoba, our farm home was along a river. The river was a place to explore and escape. When I needed to find serenity and solace, the river was my sanctuary. There is a calming trance that overcomes me when I sit beside water and watch it flow. It is water that brings me restorative peace.
In living with cancer, water is an image that still holds a lot of power for me. Unfortunately, these days I don’t feel well enough to immerse myself in nature to experience water’s calming benefits. Sitting or walking alongside a body of water is a dream I hold on to that I will realize one day when low energy levels with chemo are behind me.
I need sunshine to boost my spirits. The warm reds, browns, and golden yellows of fall are a visual delight at this time of the year.
Manitoba winter is around the corner. I’m not looking forward to the colder winter months ahead that will coincide with my daily radiation treatments. This combo will be hard to endure.
Chemotherapy Challenges
When you have a chemo-induced lack of appetite, food has little taste. You learn to eat to live. Food is no longer pleasurable; its purpose is for body fuel. Acidy and spicy foods have been traded in for bland and comfort foods.
As a cancer patient, needles are a part of your life. I believe that I’ll never get used to my daily needles of blood thinners and blood boosters. It surprises me that .5 ml of blood thinner injected subcutaneously can sting so much as the serum spreads in the body.
When you have chemotherapy drugs in your system (there are about 100 different kinds of chemo drugs to treat various cancers), drinking water makes you nauseous. Yet, it is a liquid that cancer patients are to use a lot to flush their system of the drug. You quickly learn to disguise the taste of water with drink crystals and flavor infusions to make it tolerable.
Chemo fatigue is an interesting phenomenon. It can be quite subtle or it can rock your world and knock you out, depending on the person. For me, it’s the former. Because it is so subtle, I am learning how to listen more carefully to my body fatigue signals.
A member of my health care team has told me that I have considerable fatigue as I wrap up the fourth chemo treatment. She says and that I should be resting most of the day—like straight bed rest except it should be in a recliner so that my nighttime sleep is not disrupted. This is a tough adjustment as I am not a napper—a familial trait from my mother.
She also tells me that my cancer diagnosis and the multitude of chemotherapy related side effects I have been experiencing are not typical of the majority of breast cancer patients she has worked with. It seems that I am a cancer patient exception once again!
With chemo fatigue, when I’ve done one small household task, it’s a good day. It amazes me to think about how many things I did in a day while working full time, raising a family, and running a household.
A body under chemo treatment is a body out of control. Cancer patients in treatment are well known to be colder than most people, because their central nervous system that regulates body heat is affected by chemo. This is why we’ll dress in layers (even in the summertime) and almost always have something covering our heads to prevent heat loss.
When I had a chemo fever, my whole body shook out of control because of rigor. This was something I’ve never experienced when I’ve had fevers before cancer. Chemo fever is definitely different. It’s scarier than having a “regular” fever because you know how sick you can become with an infection building in your body due to low immunity.
I’ve had to draw on my well of internal resources over and over again as I cope with the multitude of complications that have been part of my journey to wellness. Cancer has made me stronger and tougher than I ever thought I could be, but I’m not complaining or cynical. I hope it stays that way.
I continue moving forward in this cancer journey with my eyes wide open and a heightened sense of living in the present. Daily, I am fully aware of the smallest “positives” in my world. They help me to live on with Strength, Courage, and Determination.
While loved ones, friends, and medical caregivers have been constant companions in this cancer journey, there has been one other constant companion in this stage of my life. It’s the Little Brown Book that accompanies me whenever I am going to a medical appointment.
It measures 6” x 9” x .5” and has a black coil and a brown cover. Made from recycled paper, this lined notebook with a dateline on each page has been my anchor in navigating the world of medicine and gaining an understanding of the complexities of cancer.
As a cancer patient, you’re told early in your diagnosis to write down your questions and lists of medications for your medical visits. It’s been good advice.
There are two reasons why I like my “Little Brown Book”: there are a lot of questions cancer patients have that need to be answered, and it serves as a repository of documentation when “chemo brain” forgetfulness and short term memory become part of your everyday world.
Perhaps this Little Brown Book has become my companion because it’s reminiscent of when I was a print, radio, TV reporter where little log books were the means to hold information for news stories before they were written. Perhaps it’s a little piece of comfort and predictability that I can hold in my hands when dealing with the uncertain world of cancer. Or, maybe it’s just a useful tool to collect my thoughts to share with the array of doctors that have been taking care of me.
There have been several doctors who’ve been privy to the world of the Little Brown Book. All have been patient in the questions posed to them from the lined pages. They have appreciated that the information on the medicine mix I’m using was readily available when they asked about prescriptions.
When I was afflicted with cellulitis after my surgery, the Little Brown Book came with me to the Emergency Ward so that I could be armed with information doctors and nurses needed about my cancer history. It also became the place where my surgeon could write down his personal pager number to be contacted when the condition flared up.
I believe that once you’ve been a reporter, you’re always a reporter. The inquiring mind of a retired reporter has ways of resurrecting when facing the world of the unknown. For me, cancer is the world of the unknown.
My surgeon was the first doctor to be on the receiving line of this old reporter’s questions. There were many questions posed to him with the reporter’s basic queries of who, what, where, when, why and how. Each visit he patiently answered the questions providing information, comfort, and confidence that I was in good hands.
Then there were the various emergency room physicians from numerous visits who likewise faced this old newsgal’s queries with the Little Brown Book in hand. Always professional, the questions were answered with kindness and compassion.
When there have been concerns after hours, the “on call Oncologist” has been guided through my cancer history from notes that have been collected in the book over these past six months. They too have appreciated that the information has been easily retrieved when they have asked me questions about my cancer history.
As can be expected, my oncologist received the most questions when I’d met her for my treatment orientation. Since then, her associate Family Practitioner in Oncology has stepped in as the liaison to the Oncologist to monitor my case. He receives a list of questions each month prior to my next chemo treatment. Both doctors have been very accepting of my questions, and are teaching me so much about this disease by their responses. If I didn’t ask them questions, I would be far less informed about managing my condition.
I am not alone in the questions raised by cancer patients to their doctors. On my last visit to the Family Practitioner in Oncology he would likely substantiate this claim.
“I’m sorry I’m running late today,” he apologized. “In my family practice, I will see 20-25 patients per day for five to 10 minutes each. With cancer patients, the number of people I see in a day is 10-12, because cancer patients have a lot of questions. It’s important that I take the time that cancer patients need to answer their questions.”
The Little Brown Book is part of my cancer history. It is a living diary of my cancer journey. It sits beside my appointment calendar where it can easily be found when my inquiring mind thinks of other “unknowns” that need to be answered.
Despite the “chemo brain,” the inquiring mind of this cancer patient helps to keep me better informed about my treatment. There is less fear when I’m informed. With information and assurance from my doctors, I continue my fight in this cancer journey with Strength, Courage, and Determination.