What to say when you don’t know what to say
When you get a cancer diagnosis, it doesn’t come with a manual. But, that didn’t stop me from trying to find one on the internet! Now every time I type an “H” into google it autocompletes with Hodgkin’s Lymphoma - a real time saver. Getting my official diagnosis was not a short process and I had plenty of time to fall into internet holes. By the time I knew for sure, my doctors had suspected cancer for 3-4 weeks. That limbo period of waiting for biopsy results was one of the most agonizing times of my life and it felt like an eternity. So much so that when I finally got the results, I actually had a surprising sense of relief.
After my diagnosis was confirmed, there were a lot of steps that needed to be taken in quick succession. I needed to get preliminary medical tests, find out the stage of the cancer and decide where I wanted to get treatment. I scheduled appointments with several different oncologists to find the right doctor for me and the right facility for my treatment. At my first appointment, I found out that certain chemotherapies can cause infertility in women and my oncologist recommended that I explore freezing my eggs if having kids was important to me. (That part definitely wasn’t in the manual.) I did decide to go through with fertility treatment, but that’s a story for another blog post.
I was also faced with the challenge of telling the people in my life about my cancer. This is no small task, and anyone who has ever had to do it will tell you that the words do not come easy. It’s awkward and uncomfortable and no one knows what to say. My closest friends and family knew about my situation from the very first signs that something was wrong, but I waited to tell most other people until I was absolutely sure, because the last thing I wanted to do was take back my cancer conversations.
That meant that I had already been processing the news for about a month by the time I really started to tell people, and even though I was starting to come to terms with the reality of my situation, everyone I told was hearing it for the first time. That was really tough because it sometimes put me in a position where I had to comfort others about my own disease.
I don’t blame people for not knowing what to say. I’m sure I wouldn’t know what to say either, but there were definitely some responses that made me feel better than others. I wanted to share some insights that might help people to navigate these conversations better.
Try not to interrogate
Hearing that someone you love has cancer is shocking and it’s natural for you to want to know more, but keep in mind that even though you are having this conversation for the first time, the person who is telling you about their cancer has likely had this conversation over and over again. It’s easy to start feeling like a broken record. While it may be tempting to start a rapid fire question round, this can be really overwhelming. Furthermore, the person you are talking to might not know the answer to all of your questions. For example, I started telling people before I knew the stage of my cancer and where I was going to get treatment. Since uncertainty can be the hardest part, it might be emotional to remind someone of all of the unknowns. Instead, try to ask questions like “How are you doing?” or say things like “You’re doing a great job” and “I’m here for you”.
Since we’re on the subject, here are answers to all the rapid fire questions you may have right now:
Q. How did you know you were sick?
A. I found a lump in my throat, went to my family doctor, got a cat-scan, got a automated text with a report that said I might have cancer (maybe not the best system, Wellspan…), got a cat-scan guided needle-core biopsy, waited for a week for results, results came back inconclusive, tissue sample was sent to Johns Hopkins for further analysis, another week passes, Johns Hopkins says it’s Hodgkin’s Lymphoma and ta-da! Diagnosed.
Q. What stage is your cancer?
A. Stage 2a. This is great news! It means that my cancer is only on the top half of my body, and it hasn’t spread out of my lymph system to other organs or into my musculoskeletal structure. Hooray! This also means that I don’t have scary “B symptoms” like night sweats, extreme weight loss and fatigue.
Q. How serious is it?
A. Hodgkin’s Lymphoma is curable and most people my age make a full recovery. As far as cancers go, it’s definitely not the worst one you can get. The goal of my treatment is to cure the cancer completely and my doctors expect that I will make a full recovery.
Q. What are you doing for your treatment?
A. I am getting chemotherapy at Lancaster General’s Ann B. Barshinger Cancer Institute. Unlike some cancers, surgical removal isn’t an option in Lymphomas. My doctors also did not recommend radiation in my case because many of the tumors are in my chest, meaning they would have to go through breast tissue with radiation and put me at risk of getting a secondary cancer like breast cancer or melanoma. Since we are trying our very best to not give me any more cancers while we cure the first one, my care team and I opted for 6 months of chemo instead. I had my first infusion on May 29th and I will have them every other Friday until I don’t have cancer anymore.
Q. How can I help?
A. See insight 2
Be specific about how you can help
The number one thing I heard from most people I told was, “Please let me know if there’s anything I can do to help you.” It is great to know that the people in your life are there for you and want to help you, but it is also sometimes hard to know what you might need help with. Plus, actually asking for help can be really difficult. Instead, try to be very specific about what help you can offer.
Examples
“Can I bring you some food so you don’t have to cook?”
“Do you need help doing your laundry?”
“I can stop by and help you with your housework, if you need it!”
“Are you feeling up for a walk?”
“I’m heading to the grocery store - do you need anything?”
“I’m here to talk, if you’re ever feeling overwhelmed”
It’s so much easier to say yes to one of these questions than it is to ask someone for help directly.
Make sure to keep having normal conversations
Just because your friend has cancer now doesn’t mean they want to talk about it every second of every day. Try not to make it weird! Make sure that you keep having normal conversations even after you know about their cancer. Sometimes it is really nice to be able to step out of the spotlight and pretend things are normal for a few minutes. It’s okay to check in about how your friend is feeling, but try to not to make every conversation about it. There are some people in my life who have done a phenomenal job at this and I am so thankful to them for keeping light-hearted normal interactions in my life.
Be mindful of coping mechanisms
One of my main coping mechanisms is humor. There were several conversations that I had with people about my diagnosis where I used humor to make myself feel more comfortable. As it turns out, people don’t know how to respond to cancer jokes (LOL). I know that joking about my cancer can sometimes make people uncomfortable but it helps me to find a way to talk about it and get through the day. Please let it be known that I officially give everyone permission to laugh at my cancer jokes.
We don’t have to make it taboo
Cancer has a really weird place in our society. Almost everyone has been affected by it at one time or another and it carries with it some really heavy emotional baggage for people. Hodgkin’s Lymphoma is also a disease that strikes people randomly, with no link to lifestyle choices or hereditary factors. I don’t know why I won the cancer lottery this time, but I really try to avoid “why me?” type of thoughts. Frankly, why not me? Who am I to be exempt from cancer? For better or worse, fighting cancer is a part of my life now and there’s no reason to pretend it isn’t. Please don’t be afraid to call it what it is and walk along side me during my journey.
I want to give a disclaimer that these rules may not apply to everyone in your life with a cancer diagnosis, but responses that followed them made me feel the best and I hope that they are a helpful framework. The best advice I can give when you are hearing that someone you love has cancer is to be mindful and patient, and most of all keep showing up for them.
