I’m a 5’8”, 150ish lbs guy with a size 10 ½ shoe. We’re a happy family of four in a single-family home in a nice suburb. I am perfectly average in so many ways, and happily so. Even my sister and I are just under three years apart. But when I was diagnosed with a 19 cm long Ewings Sarcoma in my left hip and started what would be 11 months of treatment, my experience was anything but average.
Even though every cancer patient is unique, there are very common threads or experiences that make the cancer journey relatable to those of us who unwillingly joined the Cancer Club. For me, I was very lucky. Not because I got cancer of course, no type of cancer is a good type to get, but because of my family and not just the type of support they provided me, but the way in which they provided it. I think that is all too often overlooked when we talk about “being there” for a cancer patient.
My dad is not just a doctor, but a cancer doctor. I know, I picked my parents well. And he wasn’t just a cancer doctor, but the Vice Chair of Radiation Oncology in the hospital I was treated at and a prominent member of the radiation oncology community. What that meant for me practically is that my treatment plans went to specialists around the world for second opinions. The hospital pulled out all the stops to provide me support and make sure I was receiving timely care. I went from initial scans to started treatment in less than four days. I had the head of the hospital come visit me in my hospital room. But most importantly, I had a member of my support structure who had accurate and comprehensive knowledge about cancer treatment. I had a dad who could hear what my treating physicians were saying and understand, truly understand, what all of that meant.
However, he didn’t just decide on things unilaterally, he took the time to make sure that I understood things and asked my opinion too, and that is how he provided that support.
For my dad though, that also meant that he knew everything that could go wrong, all the risks and all the dangers. It meant that he carried not just the burden of his favorite son (only son) having cancer but also that he was largely responsible for making sure my treatment went well. And all of us know from experience that nothing always goes to plan. My dad provided support for me medically which was immeasurably helpful and comforting, but he was the one that suffered for it.
My mom, like most people, is not a doctor. She left most of the medical-ly stuff to my dad. And she, probably like most people, had a lot of anxiety surrounding the cancer process. Her approach to that was to make sure she could control the things she understood. Specifically, my medication dosage, nutrition, and fertility. While my story around fertility preservation is hilarious, my mom would never forgive me if I shared it publicly so you’ll have to just trust me on that one. My mom kept all of my medications in her room and made sure that she recorded each and every pill I took and when and how much and this and that in a little journal. Of course, my pill taking schedule was complicated and extensive so having someone to organize that while I was on a lot of painkillers was much needed. As for nutrition, she was in charge of making sure I ate anything when I was nauseous and ate well when I was feeling good. That being said, a chicken, cheese and tomato smoothie isn’t going to go down great at any time, Mom.
Where my mom struggled was relaxing that control once I was ready to regain some of that responsibility. Maybe it was something that she needed to do to manage her anxiety, but it was really challenging for me as a cancer patient who had lost most of my independence and autonomy to not be able to take it back. She provided the kind of support I needed but it was hard for her to adjust when my needs changed during the treatment process. However, if I would rather have my absolutely unstoppable mother. I’d rather have a person in my corner with the determination to get through the insurance phone maze.
Truly, I’m pretty sure my mom could take anyone in a fight if my sister and I were in danger. My boss recently shared this quote from Vashni Nilon that I thought fit my mom pretty handily, “I have only seen one thing more relentless than cancer. Mothers.”
My sister was a senior in high school for most of my treatment. She was at school most of the day. She, like my mom, also isn’t a doctor. But she wasn’t in a place to manage my treatment process in any way. So she did, what I think, is one of the most incredible things she could have done for me. She said to me, “I do not know exactly what you need. Please give me a job I can do during your treatment process.” And when I, like many cancer patients, did not know what she could do for me she provided my specific options. This is incredible. As a cancer patient, there are a million people doing things for you all the time and a million more who ambiguously offer, “Just let me know what I can do,” and never follow up. Having someone who says “I want you to give me a job” is important because it let’s me know that I will not be a burden on her in that way, I will be helping her feel like she is doing what she can to support me. She gave me the opportunity to voice a need myself first by asking if I had an idea of what she can do first so I could advocate for my own needs. And when I did not have anything specific, she gave me options to choose from so I would not have to do all the mental legwork of figuring things out for her to do.
In the end, my sister was my snack courier. If I was ever had a craving, my sister would bring it to me. A small task that she could manage that was immeasurably helpful to me because she consistently followed through on her support. If you want to support a cancer patient and do not know how to do it, please follow my sister’s example. If you are a cancer patient, you can ask your extended support system to come up with options for things they can do to help.
What is the moral of the story, or as the kids say, the tl:dr. No cancer experience is the same. No cancer patient has the exact same needs. It is important that the support you provide to a person with cancer is 1) the support they want you to provide, and 2) provided to them in the way they want. Cancer patients are often not lacking in support generally, but they are all too often lacking the support they need. We can all be my sister when we are being present for someone else.
All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer. If you have a story or experience you would like to share with the cancer community we would love to hear from you! Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.