Oct. 18 has come and gone again. It feels so strange that it’s already November, but it’s even stranger that it’s officially been two years since Tommy was diagnosed with esophageal cancer. It feels like a lifetime ago. Our lives have changed so much. We have learned so much.
I woke up today feeling incredibly grateful for the place we are in right at this moment. I say “this moment,” because we have learned (and are still learning!) to appreciate the present in a way I would not have understood two years ago. No one knows what tomorrow will bring, but today, right this moment, we are grateful for so much.
I was thinking back to the very beginning of this journey, and wondered what advice would have been helpful in those early days. I might not have been able to fully understand it all, at the time, but here’s a short list of things that might be helpful for new caregivers and fighters. (This list is by no means comprehensive—if you have advice, tips, or encouragement that you would like to add for new or seasoned cancer fighters, please comment below!)
Your role as a caregiver will change. A lot.
Tommy and I kept the diagnosis to ourselves for many weeks. Once we did share, there was a mixed sense of relief and stress. Relief, because we now had more people on our team—friends and family were there to help and wanted to support. Stress, because then the questions and messages started coming. Some days the messages will lift you up and feel encouraged, and some days you may feel like you want to lock your phone in the other room. (It is COMPLETELY FINE to not respond to the messages. You don’t owe anyone a response.) We found sites like Caring Bridge to be helpful. You can share an update with everyone at one time, and even assign someone to be the “question answerer” if you don’t feel up to it yourself. There may be a moment when you are ready to respond and share, but it should be on your terms.
It can feel INSANE when a doctor asks you to decide what course of treatment you want to take. You think: “I’m not a doctor! How could I possibly decide something this important with little to no medical knowledge?” We have had several moments like this. Your doctor should present options and explain their recommendations in-depth, but ultimately, it’s your call. My advice on this is to get all the information, sit with it, communicate every hesitation, ask every single question (no question is too small or too silly; seriously, ask it!), and go with what feels right. If an option doesn’t feel right for you, seek other options if they are available, work with the proposed treatment plan until you’re clear and comfortable, or seek a second opinion (see number 3)! It’s your life and journey; don’t feel bullied into something that isn’t right for you.