What are you really looking for?
When I first found out that my husband had thyroid cancer, I felt the overwhelming need to learn as much as possible about that cancer and what that diagnosis meant for my family. I started to get bogged down with the different types of thyroid cancer, life expectancy rates, studies, reports, and statistics. I kept searching for something that would give me enough information and knowledge to feel like I could ask for what he needed. I wanted to have an idea of what questions we should ask his doctors in order to make sure that we felt he was getting the treatment he really needed to have.
I came to realize that it doesn't matter what the statistics say. It's not going to predict what happens to your loved one. It also won't forecast how long they have to live, how they’ll react to treatments or how likely they will be cancer free. I also began to see that I was looking for the answer I wanted to find instead of seeking to understand.
Note: Having access to the wealth of information available to us is a useful tool. Researching can help us walk into oncology appointments better informed, but we should also keep in mind the amount of experience and education the doctor standing in front of us has. We can make this easier by setting boundaries for how we spend our time researching and knowing exactly what we are looking for and why.
People wanting updates
On top of researching, I was the one who ended up telling a lot of people about my husband’s diagnosis because he didn’t have the energy to do it. Living in a world where information is usually instantaneous makes it hard for people to understand they can’t know how things are going in real-time.
I learned the hard way that as you tell people about a cancer diagnosis the replies, follow-up calls and messages grow exponentially. There are only so many times you can tell someone that your loved one has cancer and then answer all the questions you really don’t have answers for and then try to make them feel OK about it.
Note: Finding a way to make updates using an online platform is one of the best ways to create boundaries for yourself early on. You will always have close family members checking in with you personally but having a way for everyone else to get updates and leave well wishes is key. Every time you have to update someone and then tell them it's going to be OK when you don't really know it is, takes too much out of you. We all have our limits.
Gatekeeper
I was also my husband’s gatekeeper. He really wanted to know as little as possible about survival rates and statistical probabilities. He also didn’t have a lot of energy to talk to people who would get extremely emotional with him in person or on the phone. It was unfair to put him in a position of consoling someone because of his diagnosis and he refused to do it.
Our primary goal was to keep his world positive so he could prepare for surgery and heal afterward. He wanted to rest and recover. He couldn’t take every call or visit especially from people who made him feel like there was little hope.
I learned quickly that I really had to filter things for him. I had to give him only the information that was pertinent to him and really try to field which phone calls or visits he actually had the energy to take.
Note: At the beginning of a cancer diagnosis, caregivers are expected to jump in and do what’s needed to help their loved one. We struggle to figure things out and end up learning in real time how we should support the person we care for. Communicating with them, understanding how they’d like to be supported, and keeping their best interests in mind will help you make decisions you know are right even though they feel difficult for you.
Don’t be a "people pleaser"
Sometimes people felt entitled to know everything all the time and wished to only speak directly to him. That wasn’t always possible. In the beginning, I struggled to stay firm with people who were persistent or lashed out against boundaries that were set. After a while, I realized I couldn’t worry about how someone chose to react and became more assertive with keeping the boundaries we set as a family.
Note: Being a cancer caregiver is stressful. Willingly putting ourselves in situations that can be uncomfortable or confrontational is the last thing we want to do. However, if you are making decisions based on what your loved one needs then you are owning your caregiving role. You can’t make everyone happy but you can do your best to support your loved one’s cancer journey.
We all have to work to understand what our relationship with information will be and how much our loved ones really want to have. All of us have the right to feel empowered to make decisions and set boundaries not just for our loved ones but also for what is in our best interest for our mental and emotional health.
