The invisible heroes for cancer survivors

Shame on me that it took over a year to dedicate a whole post just for my caretakers. In my defense, I have thanked my caregivers throughout this entire blog, in many different posts. But, it’s time I scream it from the mountaintop: To be a caregiver is a very, very tough, demanding and impossible job. 

As much as I feel alone, no cancer survivor walks this journey completely alone. There are many people who share the journey. My husband lives this cancer experience with me each and every day, on-call every night. My sister is always just a phone call away, consulting on most of my decisions, joining in the virtual appointments virtually (we have double virtual medical calls) and is ready to drop her world and drive up to help me through mine at a moment’s notice. My other very close family members, children and friends back up both my caregivers and me. Those texts and moments of shared anguish mean a lot!

For me, as the cancer patient, my list of needs can be long and contradictory. I try to do as much as I can on my own because the more I can do on my own, the stronger I feel. However, I definitely need you to be the dog walker when the high temperature is -5. I need you to check on me – – have I been drinking my water throughout the day? But I need you to leave me alone so I can have my space. You must understand my treatment plans and medications, but don’t take over my conversations with the doctors and nurses so I can still be in charge of my life. I need to be able to cry and sometimes I want you to be strong and other times, please cry with me. Definitely don’t feel sorry for me that I can’t do things anymore or even eat some of my favorite foods, but it’s okay to share a sadness about that because you have given up many of your own favorite activities and changed your life. 

For you, as the caregiver you are also walking down a path that will eventually lead to loss and I know you are trying to deal with that on your own. There isn’t a playbook that helps you know what to do in most situations. You are as tired of all this as I am. But you show up every day, ready to help me trudge through it.

I guess the most important thing my caregivers can do for both of us is to take care of yourselves. Treat yourself. Sometimes give yourself a night off. Buy yourself a Starbucks when you feel you need it. Most importantly, surround yourself with your own network of support. Caregivers, who have caregivers, are probably the strongest people in the world.

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This is my blog about living my life with Stage 4 Pancreatic Cancer—End stage. I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!) To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way. I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine. Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.

4 thoughts on “Caretakers”

  1. This is a great post Kathy. You have great insight and a gift for putting reality into written words so clearly and to-the-point. Sending love to you and also to all your devoted caregivers. ❤️❤️

    Liked by 1 person

  2. Thank you so much for putting out your blog! My husband and family and friends are very supportive and doctors and nurses too but it’s wonderful to read another person’s experiences with pancreatic cancer as I have it too, since last Sept. 👍🙏☺️
    Prayers are powerful too. Jesus is right with us. He knows pain!

    Liked by 1 person

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