Top five things I wish I knew at the beginning of my cancer journey

1. Be honest with yourself, your support system and your medical team – When I first started treatment, I remember feeling afraid to share the side effects that I was experiencing from chemo. I would tell people around me that I was “fine” because I did not want others to know how awful I felt. My Mom told me over and over again that I had to speak up about the side effects so that my doctor could intervene and others could be more understanding of my experience.

As I went through more treatments, the side effects became progressively worse. I finally took my Mom’s advice and found my voice. I learned that I had to be honest with people in my life, and most importantly, myself, about how I was really feeling on the inside. Once I became open to sharing what I was experiencing, I realized that those around me were appreciative and helpful. I think that as cancer survivors, we want to be strong, putting on our brave face and telling others that we are “fine.” Once we learn how to be honest and vulnerable (to a certain extent), I think we see more clearly that feeling “fine” is not often the case. I would encourage you to be honest about how you are truly feeling and coping with cancer, no matter where you are on your journey. Find your voice. People will not know what you do not tell them.

2. You will lose some relationships, but in return, you will gain support from people that understand your experience – Everyone around you will not be able to handle the fact that you have cancer. Cancer is uncomfortable to talk about, especially among young people who do not often expect cancer to become a word used in their daily conversations. You are going to have people in your life that will not know what to say or do. Unfortunately, people will fade in and out on your journey, but you will hopefully form new or strengthen old relationships with people who understand your cancer experience. Please know that the discomfort you may notice among others is not about you. I wish I knew to spend less time internalizing the loss of relationships and more time focused on recognizing the impact of my cancer diagnosis on those around me. I also wish I knew to put my energy into relationships that proved to be sustainable, not losing time on relationships that were broken from the start.

3. Knowledge is power – I know this saying can sound a bit cliché at times, but on the cancer journey, I think it proves to be true. I understand that we are often inundated with so much information, most of which is difficult to hear and process. However, I wish I would have known at the beginning of my cancer journey that information is empowering. Ultimately, the knowledge that you gain about your cancer will be helpful. I would encourage you to do as much of the following as possible:
- Learn about your type of cancer, treatments and resources available (yes, this is a plug for social workers) – Ask questions – Reach out to other patients and survivors to learn from their experiences – Do your own research – Inquire about the long-term effects of your treatment, especially if you are a young adult.
Please do not be afraid to gather the information that you need throughout your cancer journey, it’s yours to guide.

4. Work on “accepting” cancer in your life as early as possible – When I was going through treatment, I was on “autopilot” most of the time. My main focus was on getting better physically, going to doctor’s appointments and completing treatments. I do not think that I took the time that I needed to accept and process the fact that I had cancer until my treatments were over and I was told to go back to my “normal” life. I wish I would have known that accepting cancer is a difficult process…a process that needs to be started as close to the time of diagnosis as possible. I will admit that it has taken me several years to get to the place where I feel comfortable in my own skin as a cancer survivor and professional. The Gathering Place and your hospital social worker are great resources to help you through the process of acceptance.

5. Life will never be the same after cancer – I think this one is pretty self-explanatory. Things in your life are going to be different after the word cancer enters your life. For me, cancer led me down the path of a rewarding career, meaningful relationships and a perspective on life that I would not trade for the world.

What are things you wish you knew at the beginning of your journey?

 

Amy Chmielewski, MSSA, MA, LSW, is an oncology social worker at The Cleveland Clinic. Amy is a graduate of Case Western Reserve University, where she earned two master’s degrees in social work and bioethics. Amy’s cancer experience has inspired her career of supporting individuals and families on their own cancer journey. Amy is currently in her seventh year of survivorship from Hodgkin’s Lymphoma. She is also greatly involved in the cancer community. Amy is a volunteer in the children’s program at The Gathering Place and serves on the Patient Services Committee for The Leukemia and Lymphoma Society (LLS) Northern Ohio Chapter. Amy’s awards include the LLS Patient Services Hope Award and Dean’s Award for Outstanding Student Achievement from the Mandel School of Applied Social Sciences. Amy is published in Chicken Soup for the Soul: The Cancer Book. She enjoys writing and speaking in the cancer community to raise awareness about young adults with cancer.

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3 Responses to “Top five things I wish I knew at the beginning of my cancer journey”

  1. Eileen Saffran says:

    What an excellent and simplistic way of summing up your cancer journey. I hope others can benefit from your guidance!

    • Barbara Scharff says:

      I wish I knew six years ago not to always be “Puttin’ on the Dog” and acting as if nothing was wrong and I was the great warrior, which is something tht was always expected of me as a child through my mother’s cancer. “Don’t upset your mother” – so I didn’t, even when things weren’t okay, I acted as if it were always a sunny day. Consequently, I’ve always attracted people looking for a strong person to lean on and take care of things. Now I am all alone with Stage IV Breast CA that has metastasized to ALL my bones, liver and lungs, but most seriously in my pelvis, hips and spine. I look and sound the same, so those in my life think I am the same. It is very lonely. People, family, friends know…..but at the same time….it’s as if they don’t know…..OR DON’T WANT TO!! I had one doctor who was great, but he is no longer practicing in our state. RMCC just don’t think they can do anything more, so they have withdrawn treatment & call it Hormone Withdrawal Therapy. I have just had another biopsy of the nipple which came back positive. Most of the oncologists in Denver are with RMCC, or the University. I’ve been through close to 10 oncologists I guess. I am way overdue for a PET/ct and can’t seem to get help. Any suggestions?

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