Episode 221: Unremarkable Test Results and Unsettling Feelings: The Dilemma of Sharing Positive News

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Episode Transcript

How do you handle it when things… go well?

That day in the middle of the worst month of your life that you realize was actually ok. The trip to your dad’s doctor appointments that happened without a hiccup.

That time your spouse’s oncologist said… everything’s stable right now.

How do you handle it? 

Do you rejoice? Sing praises? Give yourself a mental high five? 

Do you worry if you say anything to anyone it’ll ruin it, jinx it, or give them a false impression that your caregiving has now become “easy”?

Does it make you feel unsettled? Is the fact that everything is ok, or better yet… good, too uncomfortable for you to sit with?

Do you feel guilty because there are others out there just like your loved one, maybe that you’re friends with, that didn’t get that good day or stable diagnosis or better yet, find out that they’re cured?

Maybe you wonder if you lose your caregiver status because, at the moment, caregiving isn’t all that hard.

Most of all do you keep it to yourself?

When good things happen we might not know how to handle it. One or all of these things might race through your mind all at once. 

Just recently my husband’s oncologist told him his test results were unremarkable and somehow that felt worse than him saying his tumors have grown by x amount of millimeters. In a matter of moments, I felt relief and concern, happiness and irritation, disbelief and guilt. 

For over a decade we have had an oncologist walk into a room and tell us how the disease has progressed in some manner. We have discussed the pros and cons of watching and waiting vs surgery. 

But this time there was nothing to talk about except that everyone has done their job well and kept cancer in a holding pattern. 

When I think about that day the first thing that comes to mind is… I should have simply been happy. 

But I wasn’t.

I wanted to ask the doctor how was he so sure everything is unremarkable? Shouldn’t we do something different to confirm this medical opinion? Maybe cancer found a way to trick the blood tests. 

What I said was, “I have to be honest this is a little hard to wrap our mind around (because I speak as if it’s for both of us while we’re there). We’ve gone for more than a decade coming into these appointments and have come to expect some sort of progression of cancer. So hearing that it’s stayed the same is a little unsettling.”

I was honest. 

For a split second I swear I saw a look in the oncologists eyes that said “isn’t this some crap now. “ As if this might be the only guaranteed good news he was going to give that day and I didn’t jump up and hug him.

I’m sure this was me projecting because his oncologist is the sweetest doctor we’ve had. But honestly neither my husband or I left that office feeling elated. It was almost as if we were just as tired as we would have been if we had had bad news. 

Then later that day I realized the people that follow his caringbridge page would be waiting for an update and for the first time I didn’t know what to say. 

His cancer isn’t gone, so I didn’t want anyone to get the idea that it’s all over. You and I both know it’s really easy for people to forget or not understand the real fact that caregiving is usually for the entire life span of your loved one as is the disease or disability is for the person you care for. 

I also didn’t want people to think my dedication for caregiving was diminished. 

I didn’t want to write the update and I sat with it for a couple of days. It was challenging to write an update that everyone has been waiting for years to read. I wanted to hide the good news and how I felt. 

Because again… I was concerned about the judgement that could come from my reaction to what everyone else would consider a win. 

I did post, but it wasn’t very long. I let them know everything was the same and we’ll go back in six months. Simple. To the point and of course people replied back with the joy and enthusiasm I felt I should have been feeling. 

It’s always interesting to me when I find myself falling into the shoulds. Instead of reprimanding myself, telling myself I’m better than that I look at it as a reminder that I’m human and when I am sitting with something that makes me uncomfortable my vulnerability goes sky high. 

Most importantly when I feel I want to hide a part of my caregiving I know you could be hiding it too and the only way we can normalize these feelings is to talk about them. 

So I’ll say it. 

Finding out my husband’s cancer is stable did not make me happy. In fact it made me a little angry that I am expected to be instantly happy. Like I was supposed to completely let go of what the decade of learning how to live with cancer has caused me to carry. Take the win. 

The good news just activated a new game plan in me. It took a lot of hard work to get here. Now we had to work hard to stay here. 

So no… there wasn’t a celebration other than a big hug. 

Here’s the thing… I didn’t celebrate because when cancer lives in the house with you… you know there are times when in it’s game of hide and seek it sometimes likes to be the one that hides and other times it likes to be the seeker but it never let’s you know what part of the game it’s playing. 

You’re always waiting to find out. 

Since my husband and I generally don’t like waiting for other people we did what we always do…

We went on with our lives. He went to work. I went back home. We continued as we always have.. indifferent to cancer. In fact if you met us and didn’t notice any of the many scars he has you wouldn’t know. 

As I was talking to someone the other day about my inability to feel happy about this last doctor’s visit I realized that it’s just me not wanting to become complacent. 

And to you or other people that could seem ungrateful. But I have to tell you gratitude is all I have. 

I want you to know that you can feel guilty your child rang the bell because all the friends they made during treatment are still there and still feel grateful your family can get some rest. 

You can be cynical about a good doctor’s appointment and still be grateful it went well. 

There isn’t a need for either or in caregiving… or life in general. It’s both, and. 

Gratitude is one of the most important tools I have in life and it helps me find balance within the complexities of caregiving. It let’s me come to the end of what seems like a bad day and look for at least one good thing that happened. It keeps small problems small so I have the energy for the real problems that show up. It gives me the ability to sit with what is uncomfortable because I know in the end I will grow and learn from it. 

It’s what helps me hold my husband in a hug just a second longer grateful he’s fine for now even though fine for now isn’t good enough for me. 

Thanks for listening.