Episode 3: Overwhelming Information

Listen on Apple Podcasts Listen on Spotify

Let’s talk about information. 

When anyone in your family suddenly finds out they have a disease or have had a debilitating accident, information becomes coveted. It becomes what you seek and it becomes all that you can think about. I wanted to know everything about cancer when my husband was first diagnosed.

When I first found out that my husband had thyroid cancer I needed to figure out what that was and what that meant for my family. I started to get bogged down with the different types of thyroid cancer, and life expectancy, studies, reports and statistics. I needed to try to figure out what this meant for us. How long was he going to live? What were we going to need to do? What did he need? Where can I find it? How do I get it? How do I find the person that needs to give him or do what my husband needs in order for him to stay alive? 

That was my focus in the first years of him having thyroid cancer. I just felt like there was so much that I needed to know. I constantly searched for the information that would make it possible for me to ask the questions I needed to ask when I went in to see the doctors with him. I did what no one should do - I googled things. The problem with cancer is that it doesn't matter what 80% of the people who have your type of cancer experience. It's not going to predict what happens to you or the person you are taking care of. It also won't forecast how long that person has to live. It’s hard to read medical studies if you're not a scientific minded person, which I am not. So I tried to scan these reports and studies and it just caused more confusion and fear. 

Trying to research cancer or any other new “threat” to the person you love becomes a task fueled by emotion. You don’t look at things with the right frame of mind and you just begin to feel the information overload that comes with trying to learn what you can. There's not always a lot of information for people. I kept searching for something that gave me enough information and knowledge to feel like I could ask for what he needed. I wanted to have an idea of what questions I needed to ask his doctors in order to make sure that we felt that he was getting the treatment that he really needed to have.

When you first find out someone has cancer and you walk into the doctors office there's just so much thrown at you. As nicely as they tell you and, with as much of a good bedside manner as his doctors and oncologists had, it was just a lot. I found myself trying to figure out what I should be asking next as I was listening to the doctors explain things.  I would sometimes ask the doctor “what would you be asking if you were me” because I didn’t know. Researching just makes you feel that you maybe have a handle on what's going on but you really don't. So it was really just me trying to control something that I didn't ask to come into our lives and that frankly I couldn't control at all. It was the way I coped with things at the time.

On top of researching I was the one who had to tell a lot of people about his diagnosis because my husband didn’t have the energy to do it.  Telling people that someone they know has cancer really has a lot of different reactions from different people.  Every time you've have to explain it, retell the story and then tell them it's going to be OK when you don't really know it is, takes so much out of you. In the world that we live in where information is instantaneous it's really hard to tell people that this is going on in your life and then for them to understand they aren't going to know minute by minute how things are going. It's impossible to do. We all have a limit. There are only so many times you can tell someone that your husband has cancer and then answer all their questions that you might not necessarily have the answers for and then try to make them feel OK about it. There's no good way to say hey I just found out my husband has cancer. Or, hey I can't go to work today because my husband has cancer. There’s no good way to say it. 

At first I tried to find the right words to say and after awhile it would just come out. There’s no way to sugar coat that information. It just chips away at you every time you say it. After telling the people that needed to be told over the phone or in person I just started telling people via texts and email thinking it would  make it easier. I would find groups of people that I could send a  group text to. I felt that it was easier for me to frame the way to say it to lessen the blow but I didn't keep in mind that when you send five people text all five of them are going to text back. I thought I was taking some of the work out of it  because I was saying it once to multiple people. It still ended up being the same because all of them, of course, would email or  text  back. 

People are genuinely concerned and cancer’s scary. The word itself holds a lot of power and I needed to say it less. Finally I found CaringBridge because I needed a way to update everyone and I realized after the first round of phone calls, conversations, texting and email that I couldn't continue doing it that way. There is no way that I could have the energy to give news over and over again especially if it wasn't good news. So thank goodness for CaringBridge because I set up an account for him and started putting information on there anytime we had an update. CaringBridge was the best way to communicate to the majority of our friends, co workers and family. 

I was also the gate keeper because my husband really wanted to know as little as possible in the beginning. I quickly found myself with a lot of information but only shared what was important for him to know at the time. He also didn’t have a lot of energy to talk to people. He wanted to focus on being positive so he could heal. He wanted to rest and allow himself to recover. So he couldn’t take every call. He couldn’t be on the phone with people who would want him to console them because they were sad. How can someone with cancer keep it together when someone that doesn't have cancer is coming to see you and they fall apart and then they find themselves trying to make them feel better that they have cancer? I found 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 who spoke with right away or who really needed to wait until he had the energy to actually have a conversation. Sometimes people felt entitled to know everything all the time and wished to speak directly to him and that wasn’t always possible. After a while I couldn’t worry about hurting someone’s feelings. I said things politely but I didn’t always give them what they wanted and that just had to be ok. 

Which I was not ok by the way. I wasn't ok.  The focus was always on him, of course, I didn't have cancer. However, only a few close people to me actually took the time to ask how I was doing. I think that’s a normal thing. It’s sometimes because people don’t know what to say in the first place. The focus is on the one that is sick. Just know, if you’re listening to this and you’re not a caregiver - you need to ask the caregiver how they're doing.  It's really hard for us. 

I have to be honest I don't know if I would've told them that I wasn't ok if they would have asked.  I just tried to keep it together because I was the only one that could. So I'm not sure how I would have answered if a lot of people asked if I was ok. I guess it would have just depended on my mental and emotional state. There are sometimes I was tempted to post a CaringBridge post just about me but I just kept it about him. Becoming a caregiver wasn’t fair but neither is having cancer. I really didn't take any time for myself I think that if someone would've asked me if I was ok it would've caused too much of a pause in my day in my life and my thinking. Maybe it was just better that I couldn’t. 

I think looking back at all this I wish I would have thought of just giving myself permission to not be ok in front of other people. I could have allowed myself to break down and cry in front of other people and know that everything wouldn’t fall apart if that happened. If only I had the strength to show the emotions that I was feeling when I felt that I could. Maybe it was more of an issue of being vulnerable and not wanting to have that vulnerability show when I felt that it would just make everything fall apart. If I could go back I would’ve just said,

It’s ok, you can break down and cry in front of other people. You can break down and everything will not fall apart maybe it’ll feel like it for a few moments but it'll all go back to the way it was and maybe you’ll feel a little bit lighter after you’ve done it.

You know if you're in the middle of talking to a friend or a family member or someone at the grocery store and it just hits you I say now, just let it out. Holding in that fear and emotion and the tears sometimes really requires more energy than just letting it go. 

Give yourself a break, it’s all right to not be OK and you can break down every once in a while.

Thank you for listening to and supporting the podcast. If you enjoyed today’s show, please share it with someone who might benefit from listening to it.

I would be extremely grateful if you would consider taking a minute to leave an honest review and rating for the show in iTunes. They’re helpful when it comes to reaching other caregivers and I read each and every one of them personally!