Lessons from a Cancer Patient During a Global Pandemic

Written by: Kate Williams

One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.”

It is a seismic slap. You stumble from the force. The shock almost knocks the wind out of you. The sting remains. Time passes. Your body remembers. Apprehension sets in when you think of it.

Cancer is traumatic.

My cancer diagnosis was unwanted, unwelcome, and uncontrollable. I ache for my life before cancer so deeply that my heart physically hurts. The trauma thrust upon me by my cancer diagnosis is at times physically and mentally paralyzing. Each day I force myself out of bed and face my new reality. In order to survive each day in my new life I was compelled to let go of what I expected my life to be this year. It’s a daily chore. I trained myself to face the world each day with a smile on my face and hide the isolation that is cancer as a young adult. The pain is dulled at times, but the wound is still fresh. And deep.

Having a cancer diagnosis dumped into my lap was coupled with two big emotions that I am still learning to live with and manage effectively in my life: trauma and grief. To cope with cancer, I have had to mourn my old life, the life I had before diagnosis. The expectation that I would spend this year bonding with my sweet baby with a full head of hair while seamlessly working and mothering was ripped from me. I had to let go of the plans I had to indulge my children this year. The idea that I had worked and saved and could finally relax a little with my family now seems so foreign that it could be someone else’s life.

The trauma of this diagnosis is the everlasting feeling that I allowed myself to be so deliriously happy, and this demonic disease caught me off guard. The seismic slap came out of nowhere. If I ever let my guard down again, another big slap could be waiting, lurking, ready to hit me at any time. The anxiety that comes from this trauma is persistent. Headaches used to be headaches. Maybe the indication that I drank one glass of wine too many the night before. Now, a headache might be a sign of metastases to the brain.

As cancer patients, we are forced to accept that life is unfair. Our lives have been upended by brutal changes. We are expected to accept this stroke of misfortune and put forward a positive outlook for our friends and family. We cannot tell them about our anger. They should not see how deeply we are truly suffering. We have to manage our torment and manage their feelings because our pain, justified and decadent as it may be, is a buzz kill.

We have to learn to view our existence through a new lens. Devastating but true, there is no return to life before cancer. Cancer patients learn to move forward. We learn to connect to others with similar experiences. We learn to thrive. We learn to survive.

As if cancer was not enough, I, like every other human across the world, am watching in horror as this pandemic is forcing humanity to grind to a near screeching halt. In an effort to stop the disease from spreading we have all been asked to give up life as we know it, at least for a while.

I watch the world recoil as the pandemic changes our human experience and somehow I remain eerily calm. I feel like a spectator watching humanity adapt to a new reality. I am not in the fishbowl this time, not the recipient of pity stares and cancer word vomit.

Reactions of my friends and family to these grossly unwelcome changes presents a bouquet of emotions that are oddly familiar to me. The anxiety of the unknown. The stress of loss of income. The social and mental isolation. The grief for what the year 2020 should have been.

The consequences of humans staying home for a few months and not safely being able to gather in large crowds are sweeping. Brides and grooms are cancelling weddings. High school seniors are missing their proms and graduations. Families are separated from their loved ones in long term care facilities. Folks who never considered themselves to be “old” are finding themselves lumped into a population deemed particularly vulnerable to the disease. Restaurants are closed. Rent cannot be paid. Retirement savings are dropping again for nervous savers who just got back on their feet after the 2008 crash. Jobs are lost. Money is tight. Stress is consuming.

Humanity is experiencing trauma. Humanity has been slapped and is struggling to recover from the shock.

And yet, humanity seems to be having a very hard time accepting how profoundly unfair life is.

The grief that our friends are experiencing for their old lives, cancer patients know well. We know that life is not a guarantee. Like us, people have been forced to make changes, difficult and uncomfortable changes, changes that affect their mental health, finances, free time with children, happiness, and self-worth. Lives will be forever altered. The trauma from this pandemic will be etched on those of us able to recall it.

Considering the silent and positive heroism Americans expect from their cancer patients, American reaction to these changes has been a mixed bag. Some people can accept that life is not a guarantee. Some have lived misfortune and know it does not discriminate. Some use the grief for what this year could have been and attempt to create a collective force more powerful than an invading threat. Some even find it patriotic and pitch in to help in any way they can, harkening back to a time when Americans proudly fought a common enemy. Folks across the country are donating time, materials, and even a “Rosie the Riveter” effort to aid our beleaguered health care workers.

Others find it beneath their “liberty” to adapt to changes that will save lives. People are angry about the effects on their income. On their assets. On the economy.

Of course, these changes are overwhelmingly unfair. It’s unfair to lose income due to a viral outbreak. It’s unfair for life as we know it to change. It’s unfair to ask everyone to stay home to protect those who are more advanced in age or immunocompromised. There is serious trauma in job loss. There is serious trauma in being broke. There is serious trauma in not being able to pay bills. I have been there, and the scars are seared in my consciousness.

Society will be traumatized from the severe economic, social, mental, and physical costs of this outbreak, and the effort to quash it.

But it is criminally morbid and cruel to suggest that “life should return to normal” for the sake of “the economy” before the viral threat has passed. It comes with a cost: American life.

I am stunned, angry, and deeply hurt at this suggestion.

There are thousands of scared cancer patients across the country who have already been dealt a hand that is profoundly unfair, and now we have to watch, fighting for our lives, while people selfishly complain about “the market.” Treatment plans have been changed, chemotherapy regimens are delayed, surgeries are rescheduled. Patients with otherwise treatable cancers will die and patients who would have passed peacefully surrounded by loved ones will die alone.

Folks without compromised immune systems who level these complaints perceive themselves to be somehow superior. Even if by the random stroke of fortune. These folks fail to consider that a seismic cancer slap can happen to anyone, anytime, anywhere. Cancer does not care.

When I was first diagnosed, people practically fell over themselves to show support to let me know I was loved. But in the time of a global pandemic my life has suddenly become a mere economic cost. A sacrifice at the feet of the almighty market. Capitalism comes with a cost and if lives of the immunocompromised and elderly are one, so be it.

Instead of hustling back to work and casting us aside, there is wisdom in the experience of cancer patients. The helplessness, grief, trauma, and anxiety that people are experiencing with Covid-19 has already taken host in our lives.

Most importantly, don’t take any of the advice you have given us. As a cancer patient, I have been told to “BE POSITIVE” more times than I can count. Despite my urge to hold a mirror back to everyone who has ever told me this, cancer has educated me that hollow advice should be spared. It vastly oversimplifies the experience of trauma and grief to just wax positive over the pain.

Instead, understand that we choose how we respond to this experience and how it will shape our lives going forward. We have every right to be angry, but let the anger ignite a fire that propels us forward.

We have to learn to view our existence through a new lens. Acknowledge the trauma. Air it out because holding it in is even more difficult.

Devastating as it may be, there is no return to our lives before this global pandemic. The change is unwelcome and unwanted, but it is here. We need to learn to move forward. We are so fortunate to be able to connect to others and share our experiences. We will learn to thrive during the pandemic. We can and will learn to survive.

Perhaps we have the misfortune of living in a time with a global pandemic. But perhaps we have the foresight to see that these changes are not the death of us. We are survivors.

Author’s note: The photo at the beginning of this piece is of me in the middle of chemotherapy. At the end of four vicious rounds of AC chemo, I went on a little trip with friends. 2020 was not the year I expected, but I have still been able to have fun. I encourage you to do the same.

 

For more about Kate, please visit her blog: https://www.mskatedecorates.com/cancering/2020/4/2/lessonsfromacancerpatientduringaglobalpandemic

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Written by: Kate Williams One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.” It is a… Read more.

Leaving a Legacy

This summer, you may notice some changes around Cancer Support Community. We are busy completing several major renovations to our facility, including renewing our entryway garden. With the addition of commemorative bricks, our newly transformed Garden of Hope offers the people of our community, like you, the opportunity to create a legacy.

A brick honors a legacy. Whether it’s a spouse, sibling, parent, or friend you’ve lost to cancer, or someone who is currently living with cancer, think about the impact that person has had on your life and the joy you shared. Through a brick, their legacy will be honored and live on in our garden and in the community for many years to come.

A brick builds a legacy. With a brick, you become part of something bigger than yourself. You join a community of people who, through many smalls acts of kindness, make our world better.  Your action begins a legacy of philanthropy, inspiring others and creating ripples of compassion and generosity.

A brick ensures a legacy. As a part of our Garden of Hope, each brick will literally, and figuratively, help build our community. You will create a beautiful outdoor space for our participants to enjoy and your gift enables Cancer Support Community to provide programs and services of support – at no cost – to ensure that no one faces cancer alone.

How will you shape your legacy? Visit our commemorative brick donation page to get started.

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This summer, you may notice some changes around Cancer Support Community. We are busy completing several major renovations to our facility, including renewing our entryway garden. With the addition of commemorative bricks, our newly transformed Garden of Hope offers the people of our community, like you, the opportunity to create a legacy. A brick honors… Read more.

Meet Mary

Mary Sheskey MSW, LSW

For more than 40 years, my professional career had been as a graphic and package designer. I had provided services to corporations and companies across the country that depended on my talent to bring their products to market. As a business owner, I was used to being in control. But when I was diagnosed with breast cancer, that changed. I experienced the devastating emotional, physical, psychological, financial and spiritual repercussions that come with a cancer diagnosis.

In April 2013, I was diagnosed with inflammatory breast cancer, a fast-moving, invasive cancer that had to be addressed immediately. Although I had owned my own business for more than 30 years, high health care costs and pre-existing conditions meant I was not able to get insurance. Without insurance coverage, my doctor wouldn’t make an appointment.

I was devastated, but I knew I had to get medical care, so I found the Breast and Cervical Cancer Project through the State of Ohio, which is a type of Medicaid coverage based on income, and they sent me to OhioHealth, where I had surgery and chemotherapy.

During my first month after diagnosis, I had medical appointments every day. As I sat in waiting rooms filling out general information for the thousandth time, I felt like something, or rather, someone was missing from my treatment. Despite having a nurse navigator, radiologist, oncologist, surgeon, and chemo nurse, I felt alone and helpless. In this time when I needed support the most, I had no one who could help me put my life back together after it had changed so dramatically.

When you’re diagnosed with cancer, it becomes your whole focus. There are constant appointments and doctors and nurses calling to check in. But after treatment ends there’s nothing – no appointments, no one asking how you’re doing.

I knew I needed support and help at this pivotal point, and I knew I was not the only person who felt this way. Every woman I encountered during my treatment was potentially facing the same feeling: a void, a loss. Now what?

These feelings drove me to return to college, 40 years after receiving my bachelor’s degree. I saw that there was a need for someone else to be part of the health care team, such as a social worker, to help patients and caregivers understand how the cancer would impact all aspects of their lives. I wanted to be that person, so I pursued a master’s degree in social work. I was motivated to help ensure that no one else had to endure the same helplessness that I did during my treatment.

In July of 2018, I began volunteering with Cancer Support Community Central Ohio. I was impressed with the caring, community environment where I could provide support to others when they needed it most. Fortunately, a position opened, and I was hired in November. Now, as the Clinical Program Coordinator at Cancer Support Community, I have the opportunity to help survivors, caretakers and their families discover the benefits of our programs that can help them strengthen themselves in body, mind and spirit to help them fight the emotional and social effects of cancer.

More importantly to me, as a social worker, I get to be that missing part in someone else’s treatment that I felt I did not have during my own. Cancer Support Community has allowed me to fulfill my dream of working as a social worker with cancer survivors and caretakers to help them develop the tools that they need to get through their cancer journey.  My passion is to help others, like myself, find the knowledge and strength to win back their lives. I want others to know that they may have cancer, but cancer doesn’t have them.

At Cancer Support Community, we provide a community where people can support each other, grow and learn. I have thoroughly enjoyed working with our participants, and with each person I interact with, I am reminded of why I became a social worker.

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Mary Sheskey MSW, LSW For more than 40 years, my professional career had been as a graphic and package designer. I had provided services to corporations and companies across the country that depended on my talent to bring their products to market. As a business owner, I was used to being in control. But when… Read more.

Meet Trish

Trish’s Story

The page on my calendar had turned to November 2017. It was time to start planning for the holidays, which, in my family, is a season of great celebration filled with joy and laughter, chilly days spent baking, shopping, and decorating, and time spent with family and friends.

However, that holiday season would be different. I had my annual mammogram that month and a small mass was found that turned out to be Stage 1 breast cancer. A surgery date was scheduled for the week of Christmas.  I was numb. It was the holidays. How could I tell friends and family that I had cancer at this time of year? In addition, I was the person who usually was taking care of others. I thought I could cope with my diagnosis initially with only the help of my husband, and I decided not to tell anyone until my surgery was completed.

Thankfully, surgery went well; that was my Christmas present. It was time to tell other family members and friends about my cancer.

Some were upset that I hadn’t told them sooner, but some treated me with cautious optimism. As long as I was walking and “looking okay,” everyone assumed I was fine. I wasn’t. I needed help, but I found it difficult to ask for it.

On my final day of radiation, I rang the bell, signifying the end of my treatment. But it also signified the end of four months of my medical team being in contact with me several times a week to check on my progress, asking if I had any questions and if I was doing okay, and telling me what to expect next. The phone stopped ringing. No more ongoing appointments were scheduled. Now what? I felt alone, and all the emotions that I had kept to myself were starting to surface.

During an appointment in radiation oncology, I read a Cancer Support Community newsletter and noticed the organization offered a wide array of programs, including a breast cancer support group, nutrition classes, a book club, and meditation – all of which interested me. A few days later, I saw a segment on television about Cancer Support Community. I decided to call. It was a decision that changed my outlook and my life.

I attended my first breast cancer support meeting, confident that I would be able to get through it without shedding a tear when it was time for me to tell my story. I wanted to show I was strong. I was wrong. Sitting among a group of amazing, resilient and compassionate women who had undergone their own unique breast cancer journeys, I felt empowered to share my story. And my pent-up emotions came pouring out.

The others patiently listened, and I received advice and information that only can be exchanged among women who have endured a similar experience. Most importantly, I developed sincere friendships that continue to flourish.

The support group has provided so much comfort and hope. Knowing that I’m not the only one who feels this way helps me make it through each day. I’ve met people I know will be my friends for the rest of our lives. We’re there for each other when one of us gets depressed or has a bad day. And we share in each other’s happiness and joyful times.

When I attend other programs and events at Cancer Support Community, I know my physical, emotional and spiritual well-being will be enriched. During the Cooking for Wellness classes, not only do participants learn to prepare nutritious meals, but it’s also a venue to share meal ideas with other cancer patients, survivors, and caregivers. The monthly book club meetings are 60-minutes of mentally stimulating, thought-provoking conversations, while the Qigong and meditation classes are relaxing and spiritually uplifting.

During my cancer journey, it was easy to slip into a dark hole and feel depressed, anxious, and even question my purpose in life. Now I have a life filled with hope and live each day to its fullest. I have Cancer Support Community to thank for that.

An Update from Trish:

The holidays are upon us once again and I’m glad to report that my first-year post-surgery tests and exam were all good! I continue to attend the support group and other programs at Cancer Support Community that have been so helpful throughout my cancer journey.

On behalf of all my fellow participants at Cancer Support Community, thank you for your support. Your gifts mean that all the programs the organization offers will continue to be offered at no cost, so anyone impacted by cancer can find the support they need to improve their quality of life. You are helping to make a real difference for each one of us. Thank you!

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Trish’s Story The page on my calendar had turned to November 2017. It was time to start planning for the holidays, which, in my family, is a season of great celebration filled with joy and laughter, chilly days spent baking, shopping, and decorating, and time spent with family and friends. However, that holiday season would… Read more.

Meet Pete

My Today

There is no explaining how you feel when your doctor says, “you have cancer.” This diagnosis was so overwhelming that I was not myself, and my temper, patience, and ability to reason effectively changed greatly. Not having much of a support network in town, other than close family, made it even more difficult to process.

My wife Kathy and I moved to Hilliard in early 2015 to be near our children and granddaughter. I had worked in industrial sales and banking during my career, and I retired from Charter One Bank at the end of 2011.

Kathy’s mom moved here with us, and she just turned 90. We had lived in Twinsburg, Ohio, for 35 years, so this was a big adventure for us! And while we were glad to be bringing our family together here in Columbus, we left behind our network of close friends and activities that we had enjoyed for a long time, and knew only a few new neighbors here.

Less than 18 months after moving here, I was diagnosed with Stage IV Diffuse Large B Cell Lymphoma, a form of non-Hodgkin’s lymphoma. I had no idea that anything was wrong, except for a pain in my right hip that I thought to be a pulled muscle from one of my regular walks. The Stage IV part was due to the cancer becoming involved in my pelvic bone.

My first day of chemotherapy infusion was another moment etched in my memory. When that needle went in, it seemed to change me forever. I obviously was not ready for all of this, and without a network of local friends, I felt extremely alone, except for my family, of course.

My daughter, Laura, began searching for help for me, and she discovered Cancer Support Community Central Ohio. She came here first to register herself and set up my appointment. When I walked in, I felt extremely welcome. I sat with Jen (one of the social workers) to review my history. We talked (and cried a bit) about how few friends I had here in Columbus, and she presented the programs and resources that are available at Cancer Support Community.

It was like finding an oasis in the desert! Who knew all of this was available, at a time when I truly needed help? Instead of loneliness and despair, I had a new surge of hope that things would get better. My new motto became “No one can take away my Today!” I use this motto today and have used it every day since coming here for the first time. When God calls me home someday, I will give up “my Today” freely, but until then no one can take away my Today!

I started attending the Friday Tai Chi class, taught by Dan Lucas. Dan is an outstanding martial arts teacher and the extent of his knowledge is as amazing as his ability to perform Tai Chi. I learned that doing a type of twisting exercise causes the lymph nodes to bring wellness to the body, not disease like my lymphoma. I attended Dan’s class until my energy levels from the chemotherapy treatments and my very poor balance would not allow me to continue. I want to resume activities like Tai Chi, Qigong or yoga more actively very soon. All these activities are available at Cancer Support Community.

While I was receiving my chemotherapy treatments, my sister Anne became very ill in Florida, first with a disease called Progressive Supranuclear Palsy, then a stroke, and then a diagnosis of cancer in her kidneys. Because my immune system had been compromised due to the chemotherapy treatments, I was not allowed to travel to see her in her time of need. I discussed this with Angie (Cancer Support Community’s program director). Angie was really there for me, and was extremely kind and understanding of my frustration of not being able to go see Anne. We discussed travel options when chemotherapy was over, and she gave me hope when cancer was trying to take my hope away. Anne passed away right after my last chemotherapy treatment, but I was able to attend her services in Florida with my family soon after.

The real story of Cancer Support Community is the essence of what Angie did for me, being there to listen to me about how cancer was affecting my life. This was also true when my best friend, Kevin, passed away a month later from the same cancer as my diagnosis. I was able to talk about it with Angie.

There are truly caring, loving people in this place and I wanted to be a part of this community that cares. Since the beginning of this year, I have been volunteering in the office on Friday afternoons, trying to help the staff with whatever needs to be done. And I have been proud to represent Cancer Support Community at several health fairs, “working the table” to help others discover this incredible group of caring people who can help them find a way to be strong, so that no one can take away their today either.

I want to thank our board members for all they do to make Cancer Support Community an exceptional resource for cancer survivors and their families and for those with no family, so that no one faces cancer alone. Without you, our programs like Cooking for Wellness, the Lunch & Learn programs, support groups, health fairs and many others, would not be available to be “discovered” and shared. Board member support magnifies the efforts of the wonderful caring people who work here to do what they do best, to provide hope to all who have heard or have been affected by the words “you have cancer.”

As for me, cancer continues to affect my life, and I currently attend cognitive behavioral therapy sessions to help me deal with depression and post-traumatic stress disorder (PTSD). I am not one to admit weakness, so having to resolve these issues was a revelation to someone like me. But there are answers today for problems that were ignored many years ago, and that is a very good thing. Toughening up does not solve anything if help is needed. Angie and I have discussed these issues, and I know I can come here to discuss anything about cancer and its effects and be heard.

The best news for me is that my oncologist told me last week that I have no new metabolic activity on my recent CT scan and blood work, and my next appointment is in three months! No one can take away my Today!!!

Thank you for allowing me to share my story with you today. God bless Cancer Support Community Central Ohio.

 

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My Today There is no explaining how you feel when your doctor says, “you have cancer.” This diagnosis was so overwhelming that I was not myself, and my temper, patience, and ability to reason effectively changed greatly. Not having much of a support network in town, other than close family, made it even more difficult… Read more.