About my blog: I’ve written two sections for each blog post; Nurse Talk and Survivor Speak. Each post describes thoughts and perspectives I have gained over the years from working as an oncology nurse and from being a cancer patient. My desire is that these posts will be both informative and inspirational for health care professionals and cancer patients alike. It is from these experiences and hope that I have drawn to write my book Both Sides of the Bedside
I’m always amazed at the tenacity of people during tough times to look at life with a “silver lining” outlook. In the midst of their suffering, they see goodness that can be celebrated. During my years as an oncology nurse, I’ve observed this many times over. My patients have taught me, it starts with the mind and a hope that in the midst of tragedy they can still celebrate something, even if it’s that they felt better than the day before. I remember caring for a patient who had a bone marrow transplant and was hospitalized for over a month. He was getting close to discharge but was not quite ready to be let go from the hospital. He and his fiancée decided they didn’t want to wait any longer to get married so he got a two hour sabbatical from the hospital and went to a garden on the hospital grounds and got married. Before he left the unit, us nurses stood on both sides of the exit doors and sang, “Here Comes the Bride.” He wore a mask so we couldn’t see his smile but saw his eyes light up with happiness. In the midst of a tough life trial, he embraced a chance to celebrate.
Another story is of a woman who was getting ready to have a bone marrow transplant and would be in the hospital during the Christmas holiday, away from her young children. She decided to pick a different day to celebrate the holidays before going into the hospital. She got a tree and was able to watch her children open gifts. She harnessed the control she had in the situation and decided to celebrate on her terms, in the scope of her condition.
In both these examples, life didn’t unfold the way these people had anticipated; however they celebrated the things that were important to them in a different way.
In my own life, I have looked for and coveted things to celebrate. During my treatment, even though I wasn’t always cheery, I did find some things to applaud. When I was constipated for three days from chemo and after finally having a bowel movement, I high-fived my significant other and did a happy dance in the living room. During the course of my treatment it was the Christmas season. Even in the midst of a time when I wasn’t feeling well, I would sit and admire lights on the Christmas tree, taking in their beauty. And, with a bandana on my bald head, I sat at my parents’ dining room table and decorated Christmas cookies with family, capturing the moments of fun. Even the little things can be celebrated.
I love taking photos and when I do I have the mind-set that this moment of what I am seeing and experiencing is a gift. I relish the time and capture it with a photo. During challenging times, I try and think of the simple things I am grateful for, things I don’t always remember that are gifts such as I have the ability to see, hear, read, and drive a car. And, I can even walk up a flight of stairs and when I drink water it tastes like water (during treatment this wasn’t the case). Whatever you choose to celebrate this Holiday season, I hope you encounter it with new eyes and embrace wonderful moments to celebrate.
As a nurse, I’ve taken care of many cancer patients and realize the time of quietness in the hospital environment is limited. I would enter their rooms to care for their needs in many ways: doing physical assessments, drawing lab work, hanging medications and chemotherapy. Sometimes, I’d walk into their rooms and they’d be sleeping or staring at the television. Perhaps they had too much quiet (no visitors at their bedside) or maybe they craved more. Many of them were feeling the grief involved with the cancer journey. I would often times try and engage them in conversation. Or, I’d try my best to be quiet if that seemed appropriate at the time. Their lives were at a standstill compared to what they lived outside of the hospital and part of their journey involved being still compared to what their life had been. A positive energy exists in the act of being still (energy in a different form) that can help us process and heal thoughts and emotions.
When I was going through cancer treatment, there was so much time I had to be still. I was on disability, unable to work. Many of my hours were spent sleeping, lying on the couch with no energy, lying on the couch fighting the nausea monster, or feeling so weak I could barely get off the couch. Back then, I looked at it as wasteful time, “I just want to get back to normal life.” But, it was necessary. The stillness allowed my body to heal and allowed my mind to go into neutral, perhaps a requirement in dealing with the heaviness involved with the cancer journey. This other world, though uncomfortable, was setting new thoughts and a new pace that I probably would not have realized living the Richter scale speed I was living prior to cancer. I believe those times of stillness were powerful growth times with God. It’s easier to hear when we are still and life is quiet.
There is a saying, “don’t get your hopes up and you won’t be disappointed.” Our hope in cancer care is for everything to work out as planned and with a beneficial outcome. Unfortunately, that’s not always how life goes.
Anyone can tell you there are countless disappointments on the cancer journey. They range from the initial diagnosis (I would say devastation, a form of disappointment) and extend too many hurdles during treatment. As an oncology nurse, I worked with patients who were admitted to the hospital for numerous reasons: an unexpected fever due to infection, needed better pain control, or needed emergency surgery— to name a few. Of course, they didn’t plan on being in the hospital. It was a disappointment they had to adapt to, another curve on the cancer journey. But cancer is like that. It can cause our lives to change drastically from one minute to the next. Is there anything that can be learned from these disappointing times? A positive trait I saw when my patients were dealing with their disappointments was the trait of flexibility. Even though it wasn’t the plan they had in mind or wanted, I saw them make the best of the situation. They would sometimes laugh at the irony of being in the hospital, enjoy time with family and friends that visited, or not think about it and live in the present. Even though the disappointment stung, they offset it with an incredible sense of adaptability and flexibility. They accepted this new turn in the road.
I woke up in the middle of the night with a gripping pain on the left side of my back and felt as if I couldn’t take a deep breath. Is someone stabbing me with a knife? Earlier that day, I’d had a Port-a-Cath (a device for IV access) surgically implanted into my chest. As a nurse, I was very comfortable with Ports having taken care of patients who had them. Now that there was one inside of me, I wasn’t so comfortable.
I meandered down the stairs and sat in a wicker chair near the sliding glass door feeling afraid. I pondered why this was happening to me, another disappointment/set-back on the cancer journey. This wasn’t part of my plan. Disappointments can make us feel afraid and make us question where the road is taking us. There are many curves on the cancer journey. Part of dealing with life on this road is to absorb the shocks with flexibility.
Morning came and I headed to the hospital for a chest x-ray after talking to my surgeon. I learned that I had a pneumothorax (an air leak into the pleural space that surrounds the lung). Thankfully, it was small and would resolve on its own. I actually chuckled and remembered patients I’d cared for who had a pneumothorax. Now I understood what they had felt.
Instead of looking at disappointments as “setting us back” maybe we should try to view them as an obstacle with a guidepost or sign pointing in another direction. We don’t always know why the signs take us on a different road than our dreams or plans. We may never know, however as we accept this detour or new path we might find surprises that can lead us to bigger things than we would have become.
“Let’s walk down the hallway and get you moving,” I said to my twenty-year-old male patient who had testicular cancer.
Nurses often try to get patients out of bed and moving, as appropriate. Why? We all know that having an inactive lifestyle can lead to more health problems later on in life. The following are more reasons for cancer survivors to exercise: An article in the September 2015 issue of the Oncology Nursing Forum states, research suggests that regular physical activity after cancer diagnosis may significantly improve survival outcomes in survivors of breast and colon cancer. “Large-scale studies have shown that participation in regular physical activity after diagnosis can result in as much as a 50% reduction in the risk of cancer mortality in breast and colon survivors.” “Specifically, walking the equivalent of three to six hours per week after diagnosis has been found to be associated with a significant decrease in the risk of breast and colon cancer mortality.”
Karvinen, K., Vallance, J. (2015, September). Breast and Colon Cancer Survivors’ Expectations About Physical Activity for Improving Survival. Oncology Nursing Forum, 42 (5) 527-533.
There were some days going through cancer treatment that I could barely shuffle down the aisles at Target. Towards the end of my seven-months of chemotherapy, I definitely noticed that I had lost muscle mass and I felt stiff. I began walking around the neighborhood and did stretching. It felt good to move my body. Even though it took time, effort and patience to build my stamina and strength back, I did it. Now, I participate in yoga, walk, and attend spin classes. I’ve also ran/walked three half-marathons.
As an oncology nurse, I would do many things prior to giving my patients chemotherapy. I would check their chemo bag with another nurse next to the doctor’s order, administer anti-nausea medication, grab the arsenal of outerwear protection for myself (thick blue gloves, yellow gown and goggles), and more. However, as much as I had prepared to give my patients chemo, I never thought to ask them what they did to prepare mentally and emotionally to receive this harsh drug. It never occurred to me that they might be dealing with anxiety. “According to the National Comprehensive Cancer Network, the incidence of anxiety in patients with cancer is as high as 47%.”
Reference: Garcia, S. (2014, October). Clinical Journal of Oncology Nursing, The Effects of Education on Anxiety Levels in Patients Receiving Chemotherapy for the First Time: An Integrative Review, (18) 5 pp. 516-521.
I had never dealt with overwhelming anxiety before, until I faced the chemo monster. A day I will never forget, I was being driven to the cancer center for my fourth chemo treatment. Everything was calm as I looked out at green trees, blue sky, and manicured shrubs. Until, a feeling of dread hit me knowing what I was driving toward was going to make me so ill. I trembled, I cried, I even dry heaved on my way to the cancer center. My previous chemo treatments had left me with horrendous nausea and vomiting for four-plus days. I was dumbfounded watching myself fall apart due to anxiety. I made it to the cancer center and stumbled into the office. Typically, I’d walk in, sign my name on the clipboard, and wait. This time my nurse escorted me to the chemo room immediately, sat me down, and threw a gold emesis basin into my lap. “It’s okay, take some deep breaths.” I attempted in between sobs.
There were three other patients in the room. I didn’t look at them but could hear their consoling words. “This is hard, but you can get through this.” Another said, “We all understand how you feel.”
My nurse handed me a valium and gave me a cup of water. I gulped both down. For now, the invader would be subsided.
I’ve learned a lot from my patient perspective. I know how deep and debilitating anxiety in the cancer journey can be. Thankfully, there are things patients can do to help themselves. An article in the Clinical Journal of Oncology Nursing lists some research-based interventions that are likely to be effective: Exercise, music therapy, yoga, mindfulness, and more. I’ve found additional things to add to the list: Reassurance from others, hand-holding, focusing on words of hope, and having someone listen and allow me to spill my concerns.
Reference: Smith, P. et al. (2014, December). Clinical Journal of Oncology Nursing. Update on Research-Based Interventions for Anxiety in Patients with Cancer. (18) 6, pp. 5-11.
Cancer patients and their families deal with many stresses along the cancer journey, from diagnosis through treatment and beyond. They wrestle with the cancer invader, their piece of mind under attack. How do they cope? They maneuver through the grief and question how to restructure their lives. Stress has everyone on pins and needles wondering what the patient’s outcome will be. Some relationships grow stronger and some fall apart.
As a patient, I found the cancer experience to be so much more taxing mentally and emotionally (and every way) than I knew as a nurse. I had to cope with horrendous nausea and vomiting, debilitating fatigue, being on disability, moving and more. Grief bombarded me and I questioned how I was going to deal with my illness. I tried to cope in positive ways: writing in a journal, praying, and painting. These things all helped but I still experienced bouts of depression, cried buckets of tears, and was overwhelmed with bursts of anxiety. Until one day, I decided I’d look at my situation as an adventure. Not good or bad, but as another life adventure. This shift in my thinking helped me balance the weight and heaviness I felt emotional and mentally. I was coping with cancer in a different way.
“You never know how strong you are until being strong is the only option you have.” Unknown
Standing at the bedside in a patient’s room in the pediatric hospital, I’d be reminded of their former life when I saw a framed photo of them holding a football or kicking a soccer ball. Now, they were lying in bed with chemotherapy infusing into their bodies. It was sad. Their lives had taken a drastic turn, one they and their families never imagined. But as time went on and they completed their treatments, many would come back to the hospital to visit. They’d give the nurses big hugs and have smiles plastered on their faces. They had weathered the storm and embraced their new life as a cancer survivor.
When I was going through cancer treatment, it was hard to let go of my old life. It was a great life filled with work, travel, independence and fun. Throughout my diagnosis and treatment, I saw my old self fade away and frankly I was mad. But as I lived the cancer journey and the grief involved, I extracted a new me who is deeper, more insightful, and more thankful. As a survivor, I have a new life that is filled with many of the same activities as before, however this life has more clarity, gratefulness, and an increased passion to help others on the cancer journey.
I have taken care of patients who dealt with late effects from cancer treatment, an ongoing reminder that their lives had been altered by cancer. “Late effects are side effects of cancer treatment that appear months or years after treatment has ended and can include physical and mental problems and second cancers.” Depending on the treatment and how their bodies respond, patients can potentially deal with fertility issues, second malignancies, nerve damage, psychological issues and more.[Hewitt, M. Greenfield, S. Stovall, E. (2006). From Cancer Patient to Cancer Survivor Lost in Transition. National Academies Press, Washington DC. ]
I am grateful that I have minimal late effects post-treatment. It is imperative as survivors to get routine screening as recommended by a health care professional. Survivorship care plans are being implemented and are necessary for survivors throughout their journey post-treatment. I still get my yearly exams, blood tests, and scans. Evaluating our bodies and lives is a must.
Having been an oncology nurse working with patients who undergo harsh and ongoing cancer treatment, I have seen the incredible and indescribable resiliency in human beings. Webster’s Dictionary defines resiliency as “a person who is strong and able to easily recover after a blow.” I have to disagree with some of this definition. Easily recover, I would delete and say be willing to be molded into a new person, whatever their outcome is and whatever they choose to be post treatment. [Collin, P. (Ed.) (2001). Webster’s Pocket English Dictionary Barnes and Noble, Inc.]
As a cancer patient I never thought of the word resilient as a term that fit me going through cancer treatment. Sometimes I got through it minute by minute and sometimes I felt like giving up. But I didn’t. Every cancer patient is resilient and battles the storm, no matter what the outcome results in. Maybe the new definition for resilient should be, being able to endure with hope and live each day as it comes.
As an oncology nurse, I remember taking care of young adult cancer patients who had told me when they were first diagnosed that their friends had visited, called, and gave them lots of attention. But as the months of treatment continued, some of their friends were nowhere to be found. Cancer definitely changes a person’s community. You just don’t know how people are going to respond.
I was grateful that when I was diagnosed with cancer, I had overwhelming support. My friends, family and co-workers surrounded me with calls, cards, prayers and love. However, there was one friend who never reached out to me. It was a shock and it hurt. As time went on, I came to realize that sometimes people don’t know what to say or how to respond. Maybe the fear they have is overwhelming and having a friend with cancer reminds them of their own mortality which they don’t want to think about. Or, their coping style is avoiding. It was also interesting to see that people who barely knew me would do the nicest things to help (send me flowers, cards, inspirational messages, even crocheted me a blanket-all very meaningful and helped uplift my spirits). Now that I’m a survivor, I’ve had many people ask me for advice on what to say to someone who is newly diagnosed. My response is to tell them you are sorry, or send them a card if that’s better. Give examples of how you’d like to help: picking up groceries, driving them to doctor’s appointments, drop off a care package, give them a journal, let them know you are praying for them, make meals for the family, and the list goes on. Also, allow them time to process what they are going through. Honor where they are on the journey.