Episode 253 : Caregiver Confessions During Cancer Scare Season

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Episode Transcript

It’s cancer scan time for our household and I’m feeling a lot of resistance to all of it right now. 

Let’s talk about what we do when we feel the shit is ready to hit the fan. 

My husband’s cancer has been shifting as of late. Maybe growing, maybe not. Kinda growing but maybe not that quickly. We need more than two sets of scans to mark growth right now because of… well, science I guess. 

When tumors grow slowly, which is usually what is hoped for in a world where your life is dictated by tumor growth. You need a little more information to know for sure a treatment needs to change. 

This will be our first time traveling to a different state to have these tests run. That already causes a new level of stress. We used to complain about having to drive 2 hours to appointments and then we complained about having to find parking in Chicago to see the Dr that was just a 5 min drive away. But now we’re flying to Chicago and it changes the feel of it all. 

At the same time there is a low level of constant worry inside of me. Last week I talked about time and right now I’m trying not to count the days until our flight or focus on the fact that we will have to wait a week for results for the first time in our cancer lives. 

I now that if tumors have continued to grow my caregiving will need to change… I get how that sounds because when I heard it right now I wanted to self sensor and filter it from you. But that isn’t why this podcast exists… and I am ok with saying —  right now I’m trying to get myself ready for how this next appointment can change my life. 

I know I don’t have cancer and I won’t have to experience any future treatments, procedures or extensive testing. That has been the case for over a decade now. I don’t know how long your loved one has needed you to care for them but here’s something we all have to understand… we are all separate human beings. We are all living our own lives and experiencing things only as we can. I will never know what it is like to be my husband right now. However, I don’t really know what it’s like to be my daughter or even my mom or my best friend. 

What I do know is what it’s like to be me. I’m an expert at that. So I know that next week… no matter what happens… will change me. Traveling for care will change us. Not being able to go back home after a stressful day of travel and scans will change us. Supporting my husband in an environment I am not used to being in will change me. 

Now change isn’t always bad. The travel and the new circumstances will, as always, give us something to talk about and joke about later, hopefully. 

But this time around there are new scans, new procedures, marking a change in the way things usually are and that, for me, is enough of a signal that I need to be prepared for what comes next. And what comes next can mean a shift in lifestyle for both of us. It may mean we have to seriously look at what constitutes the quality of life we expect and where that bar should really be. 

Quite honestly it pisses me off when I think of it, and I’m writing in real time right now so I reserve the right to have a different outlook later when looking back. It makes me angry that he has to constantly go through things like this. It pisses me off that cancer chose him and it really pisses me off that I can’t do anything to change that. To be fair… he’s never asked me to.

So I sit here in my chair talking to you about the future as if I can predict it and I can’t. I can tell you that worry is wasted energy and how you actually loose precious moments when you’re worried about the future. 

None of what I’ve ever told you is bullshit. Taking time for yourself, learning how to breathe, sitting with your feelings instead of ignoring them  are all important tools for us to use in order to survive being a caregiver. 

Yes I’m pissed off and anxious and quite frankly a little scared right now. Self care doesn’t remove your humanness. It doesn’t make things that used to bother you disappear. 

What self-care does is give you the strength to get through periods of your life, like the one I’m in, in a healthy way. 

Right now I have Worry, Anger and Fear coming to visit more than usual. Worry tries to whisper in my ear when things get quiet. It wants me to think of the what ifs. Then usually Fear shows up with Anger following soon after. 

In the past they had full reign. They came and went uncontrolled and the scanxiety I felt was really hard to manage in the week leading up to the days we had scheduled to be at the hospital for cancer visits. 

Now they show up and I acknowledge they’re there, sit with how they make me feel and then ask them to leave. I feel the worry, the fear and the anger when they show up. I give them a moment and then I let them go. 

I apologize for making it sound easy because it isn’t. Not allowing myself to get carried away by Worry and spend all day with it is extremely difficult for me. If you’ve listened to past episodes you know worry is my Achille heel. My caregiving Kryptonite. The problem is there isn’t a lot to keep it away. Worry is sneaky and knows when it has an opportunity to jump in before you even see it. What I have to do is not give it much attention. 

How does that happen? I stay in the now. I acknowledge that I feel worry. This isn’t about ignoring what I feel. I feel the worry and then I remind myself that right now… things are ok. Right now… my husband’s treatment plan hasn’t changed. Right now… I need to use the energy worry would take from me on something meaningful — like breathing more, doing less, and checking in with myself more often. 

From the outside it could look like I am ignoring the inevitable. Like I somehow am pretending these cancer appointments are not coming up soon. That isn’t the case. My husband and I have learned to love our lives together in spite of it all. We have moments when we address the worry, fear and anger together and on our own. But we always come back to enjoying the moments that matter. 

It isn’t an either or. It’s a Both And. 

I can be both worried about how his cancer may be changing and enjoy my life with him until I know for a fact that my life has to change to make room for new treatments. 

I can be both angry I am a caregiver and love every minute I care for him. 

I can both wish our lives could be cancer free and accept that living with cancer is our reality.

Knowing that there can be a shift coming up in my lives presents two choices. I can spend the next two weeks filled with worry… or I can enjoy the next two weeks and then adjust as I need to after our visit with the oncologist.

Either way the results of the testing will be the same. His cancer will not change based on if I worry more or less. 

If I let worry take control now all that will do is leave me tired and worn out at a time I will be needed the most. 

That isn’t only unfair for me but unfair for my husband. 

If I try to ignore that these days are coming and don’t spend a little more time caring for myself I’ll also be unable to be the best caregiver I can when it’s needed the most. That’s also unfair for me and unfair for my husband. 

It’s unfair but it’s also hard to do. 

So if you’re in the same situation right now I just want you to know when you’re loved one’s health declines or for some reason your caregiving becomes harder it’s normal for you to be upset about how it’s changing or disrupting your life even if it’s short term. 

It’s ok for you to take more time for yourself before it happens as if you’re trying to stock up on emotional and mental energy because running into a situation that will require more from you will need you to be at your best not running on caregiving fumes. 

Giving yourself time to sit in the fact that someone else’s health issue is about you is needed because if you don’t adjust your goals and your acceptance of this new existence you will always be unhappy.

Being a caregiver doesn’t mean you have to be miserable. You don’t automatically let go of hope you will ever be happy. 

You just have to work a little harder to find it sometimes.

You deserve that happiness.

Thanks for listening.