When Rich was first diagnosed I was really spinning around. I talked to people about what was going on and frequently I was given advice on how I should or shouldn’t be feeling or thinking. These people were not random strangers, they were people I knew well and they meant well. After our conversations, I frequently felt more isolated. No one seemed to really understand.
I spent the next few months recalling some things people said that I thought were really stupid things to say to someone who is worried about losing her husband. I have one friend, who I love dearly, tell me how things were only going to get worse and how I would eventually need help. I had many people tell me I needed to take care of myself too. I heard I shouldn’t think negative or that I shouldn’t get my hopes up. I had one person tell me I’d be better off in a condo if Rich didn’t make it. The list goes on and on and I felt pulled in all directions. I began to worry about things I hadn’t thought about. I also felt judged and silly for having concerns. There was nowhere I could go to just be me and not have some well-meaning person tell me what I needed to do. It left me feeling alone and slowly I began to not share nearly as much with some people. When we talked I would answer about Rich and quickly move on to asking about their life. Sometime this worked and sometimes it didn’t. If I shared too much I felt horrible and in the times I chose not to share some people thought I was in denial. It really made me crazy but I kept trying to focus on how they were good people who just wanted to help and they didn’t mean to cause anguish with all their advice.
I’ve now come to a place where I can let most things roll off me more easily. At least on most days. I have even examined my own behavior when I’ve met people having a hard time. Things I have said to be helpful probably were not actually helpful at all. I know I have said “take care of yourself too”. Of course they knew they should do that but when you are sick with worry and fear, running to appointments, making decisions, and trying to help the person with cancer it’s tough to think of ways you can actually care of yourself.
I began to think about what I would need people to do so I could feel they were really there. I have been so focused on what I didn’t like that I never gave much thought about what I would like to hear.
My first thought was that I wanted people to just be themselves. I don’t want people to tip toe around me for fear of saying the wrong thing. This is why I don’t say anything when people tell me what I should or shouldn’t be doing, thinking, and feeling. I don’t want to hurt them, they mean well and I don’t want them to go away because I need these people. I much prefer someone try to help and say something that stings a little than to ignore everything and say nothing.
I have no idea how I could ever tell people what would be good to hear but I thought I’d share it here in case anyone reads this and is wondering what might be helpful to someone they know. (Though these may only be things that would help me and could possibly not be right for someone else. We are all different and we all have different needs). By sharing them it will also help me to clarify them for myself as well as help me to help another person going through a rough time.
I need people to listen. Really listen. People tend to jump in with their own thoughts before I can get my thoughts out. Since Rich was diagnosed I feel like I get distracted more easily and forget what I was saying when I’m interrupted. So many times I’ve heard the phrases “why would you say that?” Or “why would you think that”? If they were really listening they would have gotten the answer probably in the next sentence.
In the times that I am frustrated that there is yet another thing on my plate, I need people to sometimes just say “wow, that really sucks”. Because it does suck. Cancer sucks. Watching Rich go through this sucks. The worry sucks. Rich having diabetes that is not well managed sucks. Not everything sucks but when things are out of my control it sucks and if I cannot fix those things then neither can they so no advice will help. Simply “wow, that sucks” would be helpful. I could then just say “yeah it does” and move on and know that I was heard.
I want people to understand that melanoma is not just a little thing. I would love it if they would do some research to learn more about it instead of making assumptions. I know this is a big thing to ask but I’m referring to the people closest to me. If they really understood more about melanoma and immunotherapy then I wouldn’t feel like I had to repeat the same things. I talked to someone who actually asked me if I was sure that Rich had melanoma because someone told him melanoma was only on the skin and myeloma was inside. If he has read anything he wouldn’t have even questioned if perhaps I could have been mistaken about the type of cancer my husband has. The more a person knows about melanoma the more they can listen.
Lastly, and there may be more I haven’t thought of but this will end up too long if I think too much, I want people to remember that even though we are going through a rough time we do have other things in our life besides cancer. One day I was going to be going away for the day and someone asked me how I could leave Rich for a whole day. Rich goes to work, I go to work. We do things. He isn’t helpless and to be with each other constantly because we were worried about a possible side effect would drive us both crazy. I love Rich with all my heart and I will take care of him always in any way that I can but we are normal people and don’t spend every second together just because he has melanoma. Again, if people listened they would know that it’s not a problem for me to do something two hours away from my house one day.
What I want is for people to treat us like normal people, to spend a little time researching about melanoma, to put aside their need to fix the unfixable and just help me to not feel like the only one that thinks it sucks. What I need is for people to do one thing and that is to be themselves and just listen.