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Advice for the Road Ahead

Advice for the Road Ahead

In her latest column, Jessica Walker offers five tips for the newly diagnosed who may feel completely overwhelmed about the journey before them.

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!)

1. Your role as a caregiver will change. A lot.

This one was a big “aha” for me. In the beginning, I thought I understood what being a caregiver looked like, but over the last two years I realized this identity shifts and transforms constantly. Some days you will be needed in a million ways, and some days just being there is enough. It’s important to be flexible. You are both trying your best, in an incredibly difficult situation. You may feel like you’re failing at times, but it’s okay. Don’t be too hard on yourself. Just because you feel like you’re failing, doesn’t mean you are. Not saying the right thing, not doing enough, doing too much—it can be a tricky balance, but you are doing an amazing job just by being present and willing to help.

2. You have to take care of yourself before you can take care of someone else.

Putting your personal health before your partner’s may seem counterintuitive, but in order to do the best for them, you have to do the best for you. This one was tough for me. Everyone tells you this, but I was convinced I could give 100 percent of my time and energy to helping Tommy, and I would still be fine. (Of course, this did not work out as I planned!) This led to me being sick for two months during his chemo treatment. Rule number one of chemo is to stay away from sick people. I had tried so hard to be there for him, I was unable to be in the same room as him. After getting better, I reevaluated how I was treating myself, and knew I had to give a little more to myself and my health. It was tough, and I felt selfish, but it’s truly the only way to sustainably support someone.

3. Your first team doesn’t have to be your only team.

Finding an oncological team is incredibly stressful. We barely knew what an oncologist was when Tommy was diagnosed, and finding the “right” one made me stressed out to the point of nausea for weeks. We finally landed on a team that made us feel comfortable and confident, and they helped us beautifully for more than a year. When the moment came to seek a second opinion after his recurrence, it felt a little awkward, as if we were betraying them. But it’s important to remember that while it’s true your team is there to help you, they are not in charge. You are the CEO of your treatment plan, and a good oncological team will recognize that. We ended up seeking a new team whose plans and ideas aligned more specifically with ours, and we absolutely consider it one of the best decisions of our lives. Tommy is now in a place where he is physically healthy and all evidence of disease is shrinking. We are confident this would not be the case if we had stayed with our original team and not explored other hospitals and options.

4. Get all the facts and options, but listen to your gut.

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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.

5. You can’t control everything, but you can control how and what you share.

When Tommy was first diagnosed, figuring out how to share the news with our parents felt overwhelming, and then deciding how and what to share with the rest of the world was even harder. It is such personal news, and you’re probably still trying to process it yourself. My main piece of advice is to wait until you’re ready. You are under no obligation to share this journey with anyone. Inviting close friends and family into your situation to support you has its benefits, but I’m talking about those further removed from your inner circle. It may feel like you should share, but you don’t have to. And if you do choose to share, you can do so however you like—no more, no less. There is no “right” way to do this. Want to share every detail and step of the journey? Amazing! Want to keep this news between you and your partner? Do it! But do it because that’s what’s best for you. You do not owe anything to anyone.

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.

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