The Co-Pilot

Cancer Happened in My Body. The Journey Happened to Both of Us.

For most of this journey, I have been the one people ask about.

How are you feeling?

What did the doctor say?

What happens next?

How is treatment going?

Those questions make sense.

I am the one with prostate cancer.

I am the one who had the biopsy.

The surgery.

The pathology.

The scans.

The treatment.

But somewhere along the way I realized there was another person living every Mile Marker beside me.

Sue.

And almost nobody was asking her the same question they kept asking me:

How are you doing?

Not, “How is Mike doing?”

Not, “What did the doctor say?”

Not, “What happens next?”

Her.

How was she doing?

That realization became one of the most important caregiver lessons this journey has taught me.

The Story Actually Started Before My Diagnosis

Three weeks before my prostate cancer diagnosis, Sue shattered her shoulder.

This was not a minor injury.

Her upper arm bone fractured into multiple pieces.

She was in significant pain.

She couldn’t drive.

She couldn’t use her arm normally.

Sleeping was difficult.

Everyday tasks that neither of us had thought twice about suddenly required help.

So for those first weeks, I became the caregiver.

I took care of Sue.

The house.

The dogs.

The things she couldn’t comfortably do for herself.

And then January came.

I had the biopsy.

We waited.

And then the phone rang.

You have prostate cancer.

In a matter of weeks, the roles began to reverse.

There Was No Time to Prepare for the Role Change

By the time surgery arrived, Sue had only recently gotten back behind the wheel.

She was still recovering from her own injury.

And now she was driving me to prostate cancer surgery.

The person I had been caring for became the person who needed to care for me.

There was no ceremony.

No orientation.

No moment when someone officially said:

You are now the caregiver.

Life simply changed.

And she did what needed to be done.

Caregiving Usually Begins Before Anyone Calls It Caregiving

I think that is true for a lot of people.

You do not necessarily wake up one morning and decide to become someone’s caregiver.

You start driving.

Listening.

Taking notes.

Picking up prescriptions.

Keeping track of appointments.

Sitting in waiting rooms.

Helping someone get dressed.

Watching symptoms.

Worrying quietly.

And eventually you realize that caregiving has become part of your life.

Sometimes before you even realize it has a name.

The Part I Couldn’t See

One of the biggest things I learned from sitting down with Sue on camera was how much of her experience happened where I could not see it.

The quiet moments.

The times when everyone else had gone home.

When the phone stopped ringing.

When the house got quiet.

When there was nothing left to do except think.

That is when Sue said the “what ifs” could get loud.

What if the diagnosis is worse than we think?

What if something changes?

What happens tomorrow?

What happens tonight?

What happens next?

From the patient’s chair, I was carrying my own version of those questions.

What I did not always see was that Sue was carrying them too.

The Caregiver Doesn’t Have All the Answers Either

This was another thing Sue helped me understand.

Family and friends naturally want updates.

They care.

They want to know how things are progressing.

But sometimes the caregiver becomes the unofficial information desk for an illness they are still trying to understand themselves.

How is he doing?

Why is this taking so long?

What did they say?

What does that mean?

When will you know more?

The questions may come from love.

But the caregiver may not know the answers.

Sue certainly did not have every answer.

And being expected to explain uncertainty to everyone else while living inside that same uncertainty can become exhausting.

What Do You Need?

That question became the center of one of the most important conversations Sue and I have had publicly.

I realized I had heard people ask her about me over and over again.

But almost nobody had stopped and asked:

Sue, what do you need?

The answer was not some grand request.

She did not ask anyone to fix cancer.

She did not expect someone to make the uncertainty disappear.

Sometimes what she needed was much simpler.

To be seen as her own person.

To be asked how she was doing.

To have someone listen.

To not be expected to know every answer.

To be allowed to say:

I don’t know either.

Listening May Be More Helpful Than Solving

I think we are uncomfortable when someone we love is hurting.

So we try to fix things.

We give advice.

We offer solutions.

We tell them everything will be okay.

We try to make uncertainty disappear.

But sometimes there is nothing to fix in that moment.

Sometimes the caregiver simply needs someone to listen without turning the conversation back toward the patient.

Not:

“How is Mike doing?”

But:

“How are you doing with all of this?”

Then wait.

The real answer may not come immediately.

Caregivers become very good at saying:

I’m fine.

Sometimes they have been saying it for so long that even they need a minute to figure out what the real answer is.

Sue’s View From the Passenger Seat

Being the Strong One Does Not Mean You Are Not Struggling

Sue has been my rock through this.

My grounding force.

My soft place to land.

But I learned something important when I said that to her.

She did not necessarily see herself the way I saw her.

To me, she was steady.

Strong.

Present.

To her, she was simply doing what needed to be done.

That may be one of the traps caregivers fall into.

Everyone sees the strength.

So nobody thinks to look for the exhaustion underneath it.

The strong person may still be scared.

The organized person may still feel overwhelmed.

The person taking care of everyone else may still need someone to take care of them for a minute.

There Can Be Guilt on Both Sides

Caregiving is emotionally complicated.

The patient may feel guilty for needing help.

The caregiver may feel guilty for feeling tired.

The patient may feel guilty that plans changed.

The caregiver may feel guilty for wanting a break.

Both people may be grieving parts of the life they had before the diagnosis.

And both may hesitate to say any of that because the other person already seems to be carrying enough.

That is why honesty matters.

Love does not require pretending that caregiving is easy.

You can love someone deeply and still be tired.

You can be grateful they are still here and still be frustrated.

You can want to help and still need help yourself.

Those feelings can exist at the same time.

Caregiving Changed Our Marriage — But So Did Being Cared For

Something happened in the months before and after my diagnosis that neither of us could have planned.

I became Sue’s caregiver.

Then she became mine.

It forced both of us into vulnerability.

And vulnerability is not always easy.

Particularly when you are accustomed to being independent.

We had to let each other do things we would normally do for ourselves.

We had to accept help.

We had to see each other hurting.

And we had to trust that when the roles changed again, the other person would still be there.

Sue said something during our conversation that probably explains it better than I ever could:

We are only as good as both of us together, no matter what role that may be.

That is what being a co-pilot means to me.

The Caregiver Is Not Sitting in the Passenger Seat Doing Nothing

I use the road metaphor a lot with Jonesing For The Journey.

Mile Markers.

Detours.

Turns we did not expect.

And Sue’s view from the passenger seat.

But I want to make something clear.

The passenger seat is not passive.

The co-pilot is watching the road too.

Looking at the map.

Remembering where the next turn is.

Noticing things the driver may miss.

Carrying part of the load.

Sometimes taking the wheel when the other person simply cannot.

That is what Sue has done.

The Cancer Dream Changed Her Future Too

Sue and I had plans before cancer.

Retirement.

Travel.

Alaska.

The motorhome.

The life we had imagined we would eventually get around to living.

When I was diagnosed, those plans did not only change for me.

They changed for Sue.

I once confidently said on camera that the dream was still alive.

Then I realized I had never actually asked her.

Did she still want it?

Her answer was simple.

She still hoped for the same journey.

It might happen differently.

The timeline might change.

But the dream was still there.

I think that says a lot about caregiving too.

The caregiver has dreams outside the diagnosis.

Their life deserves room too.

What Sue Would Tell Someone Who Just Became a Caregiver

I asked Sue what she would tell someone whose partner had just received a serious diagnosis.

Her advice was not complicated.

Take it one day at a time.

Understand that you will not get everything right for everyone.

Do what feels right for you and the person you are caring for.

I like that answer because cancer creates pressure to somehow know how to handle everything immediately.

You do not.

Neither does the caregiver.

Sometimes you simply make the best decision you can today.

Then you deal with tomorrow when tomorrow arrives.

Five Things I Think Patients Need to Understand About Their Caregiver

1. They are scared too.
   They may show it differently, but uncertainty belongs to them too.

2. They do not have all the answers.
   Do not turn the person beside you into the spokesperson for a disease neither of you fully understands yet.

3. Strength can hide exhaustion.
   Just because someone keeps showing up does not mean showing up is easy.

4. Their life changed too.
   Their calendar, plans, fears, responsibilities, and future changed alongside yours.

5. Ask what they need.
   Then listen long enough for the real answer.

Five Things I Think Friends and Family Can Do for a Caregiver

• Ask about them—not only the patient.
• Do not expect them to have every medical update or answer.
• Offer something specific instead of saying, “Let me know if you need anything.”
• Give them permission to talk without immediately trying to fix the situation.
• Remember them after the initial crisis has passed.

Cancer attracts attention when it is new.

Caregiving often continues long after everyone else has returned to normal life.

That is when support may matter most.

What I Hope You Take From This Mile Marker

If you are a patient, look at the person beside you.

The person who drove you.

Waited for you.

Took notes.

Stayed awake.

Heard the diagnosis too.

Watched you recover.

And kept saying:

I’m fine.

Ask them how they are really doing.

Better yet, ask:

What do you need?

And then stop talking long enough to hear the answer.

If you are a caregiver reading this, I hope you hear something too.

You are not simply an extension of the patient.

Your fear matters.

Your exhaustion matters.

Your hopes matter.

Your future matters.

Your story matters.

You deserve to be seen.

Because none of us travels this road alone.

Watch Sue Tell Her Story

Sue shared this part of our journey in her own words on the Jonesing For The Journey YouTube channel.

She Was Already Broken. And She Still Showed Up After My Cancer Diagnosis
Watch on YouTube

Cancer Changed My Life. Nobody Asked My Caregiver This
Watch on YouTube

And So…The Adventure Continues.