10 Things I Wish I Had Known When My Husband was Diagnosed with Cancer: 1.5 Years Later
It’s been a year and a half since Tommy was diagnosed with esophageal cancer. It honestly feels like a lifetime ago. So much about our lives has changed, and so much has been learned. I woke up today feeling incredibly grateful for the place we are at right this moment. I say this moment because we have learned to appreciate the present in a way I could not have understood a year and a half ago. No one knows what tomorrow will bring, but today, right this moment, there is so much to be grateful for. I was thinking back to the very beginning of this journey and wondered what advice would have been helpful to hear in those early days. I would not have been able to fully understand it all at the time, but I came up with a list of things that might be helpful for new caregivers/fighters. If you have advice, tips, or encouragement that you would like to add, please comment below!
Your role as a caregiver will change a lot. This one was a big aha one for me. In the beginning, I thought I understood what being a caregiver looked like, but as we have gone along, I realized that 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 each trying your best in an incredibly difficult situation, and even so, you will feel like you’re failing at times. 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.
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 gave me stress to the point of nausea for weeks. We finally landed on a team we felt comfortable and confident with, and they helped us beautifully for over a year. When the moment came to seek a second opinion after his recurrence, it felt a little awkward, as if we were not being loyal to them. Your team is there to help you, but they are not in charge. You are the ones who get to choose who your helpers are. We ended up seeking a new team whose plans and ideas aligned more specifically with ours, and we absolutely consider it to be 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. (Want to learn more about our experience seeking a second opinion? Read more HERE)
Always get all the facts and options, but then listen to your gut. It can feel INSANE when a doctor asks you to decide what course of treatment you want to take. You’re thinking, “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. Our doctors have always presented options and explained 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 then ask yourself and your partner what feels right. If an option doesn’t feel right for you, seek other options if they are available, or work with it until you’re clear and comfortable. It’s your life and journey, don’t feel bullied into something that isn’t right for you.
Forgive yourself. This one is less medical, and more for your mental health. The thing I have learned that has been most helpful to me this year as a caregiver is to relentlessly forgive myself. There can be a lot of push from the “shoulds”. I should be doing more. I should be giving more space. I should be making him more juices. I should be seeking more advice. I should be treating myself with more kindness. You are doing an incredible job just by continuing to try. Drop the “shoulds” and forgive yourself. As long as you recognize the opportunity for growth and continue to send your energy in a positive direction, guilt is not helpful. It zaps your energy and takes you out of the game. No one cares or thinks you should carry guilt, so release it. Seriously, let it go. Right now. If you need permission from someone, here you go: You Are Forgiven for whatever it is you can’t seem to shake. Feels good, huh?
You can’t stop the peaks and valleys from coming, but you can try to find value in them. The lack of control you feel during a cancer journey can feel like you’re trapped on a roller coaster. I personally hate feeling like someone else is holding the reigns to my life, and have been trying to figure out how to live with this. For example, Tommy’s last two scans have shown incredible results. We are over the moon at his response to the treatment, but I have noticed a pattern in my mood during the aftermath of a scan week. Scanxiety is powerful, and can be overwhelming emotionally. You might assume after receiving “good news” that the anxiety would melt away, but I’ve noticed that I continue to have feelings of confusion and distress in the days following the news (Read more about how Tommy describes this concept HERE). For me, scan week tends to look like: Oh yeah, scans are this week…cue massive anxiety. Hours leading up to the results are almost unbearable. Hears the good news. Overjoyed!! Settles. Confused. Can’t place unsettled emotions. Why am I not as “happy” as I thought I would be? Oh yes, because we experienced mental trauma this week. Remember to have grace with myself. Looks into the confused mess of thoughts and am surprised to find clarity and understanding. It’s the last step that always surprises me. I’ve continually noticed that when I dig into the fear and confusion, clarity is often revealed. When I sit with it for a moment and try to view it without judgment, a bit of understanding floats to the surface. I can’t stop these peaks and valleys from coming, but I can gently allow myself to feel them, navigate them, and then learn from them.
Let yourself sit with the fear and anger from time to time. At the beginning of this, I felt that experiencing fear and anger was “bad”. I thought this was “giving in”, so I would push it down to not let it “win”. This method of coping only works for so long. I quickly learned that this suppression leads to a lot of unresolved feelings that bubble up into something much more difficult to manage. Allowing myself to experience these normal (and expected) emotions, then letting myself live in them for a moment helps me remember that they are valid. Releasing them at this point is a much more helpful and sustainable path for me. (Read more about my thoughts on this concept HERE) That being said, a sub-tip number 6 is to find a therapist to help you through this. There is no shame in needing help. I would be shocked to find someone who could navigate this journey without it, so you are not alone in feeling the need to find someone to lean on. I see a therapist weekly, and can honestly say it’s changed everything for me. As a caregiver, I am not experiencing cancer physically, but the mental and emotional aspect is important to attend to. It’s great to have friends and family to speak to, but sometimes it’s wonderful to have a third party to bounce thoughts and feelings off of. I can’t speak highly enough of the organization: CancerCare. They offer endless resources, one of which is free therapy. You can talk over the phone, in person, or online. I highly recommend taking a look around their website to see if anything would be helpful to you.
You can’t control everything, but you can control how and what you share. The PR aspect of cancer can be overwhelming. When Tommy was first diagnosed, figuring out how to share the news with our parents was impossibly hard, and then deciding how and what to share with the rest of the world was even trickier. It is such personal news, and you’re probably still trying to process it yourself. My main piece of advice is: wait until you’re ready. You are under no obligation to share this journey with anyone. Of course, inviting close friends and family into your situations to support you has its benefits, but I’m talking about the “shoulds” again. It may feel like you “should” share, but you don’t have to. If you do, you can do it however you like- no more, no less. Want to write about every detail and step of the journey? Amazing! But do it because it’s helpful for your process, not because you “owe it” to anyone. For us, we kept it 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 encouraging, and some days you may feel like you want to lock your phone in the other room. It is COMPLETELY FINE to not respond. There will be a moment when you are ready and get to the responding and sharing, but it’s on your terms and your timeline. We found using sites like Caring Bridge to be helpful. You can share an update with everyone at one time, and then even assign someone to be the question answerer if you don’t feel up to it yourself.
Cancer is part of your story, but it isn’t all of it. It’s difficult to find the balance between letting cancer be a part of you, but not defining you. You will be changed by this, but you are still you. Your priorities will change, your perspective will shift, your heart will experience so much, you will feel lost, and then after a while, you begin to feel found. There is a sense of understanding and grounding that comes from a cancer journey. To be very clear, I am not grateful for cancer and never will be, but I do feel like I understand myself and my heart in ways I never did before this. I am changed, but I am still me. Somedays we feel more “cancer” and some days more “us”, but practicing that balance, whatever it means to you, is a helpful part of navigating this reorganized identity.
You have to take care of yourself before you can take care of someone else. This one was tough for me. Everyone tells you this, but I was convinced I could give 100% of my time and energy to helping Tommy, and I would still be fine. This led to me being sick for two months DURING his chemo treatment. Rule number one of chemo is you can’t be sick and be around someone in chemo. I had tried so hard to be there for him, that I was now unable to be in the same room as him. Didn’t really work out as I planned! 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 felt selfish, but it’s truly the only way to sustainably support someone.
Continue to thank your rocks. This advice was shared at CancerCon (a young adult cancer conference hosted by Stupid Cancer that Tommy and I spoke at a few weeks ago). Look at your support system and take note of the “rocks”. Who are the people who have been there for you 100% of the way and are continually sending their encouragement, strength, and love? It can be easy to take these people for granted, especially if they’ve been with you from the beginning. Take a moment to re-thank these people and let them know how important they are. Tell them how much you appreciate and value all they do. Sending quick messages can mean a lot! Thank you cards are my personal favorite way to let someone know they’re appreciated. I have several available in our shop (shameless plug I know, but I just love sending them!). Your team is there for you, so take a second to reach out to one of them today.
Navigating a cancer diagnosis, treatment, and survivorship is a learning process. It can feel isolating, but know there is a community there for you. Take it one day at a time, and try to view the overwhelming moments as an opportunity for growth. You can do this.