Episode 50 Shownotes - Feeling Empty after Cancer

Hey, friends!  I want to share a win this week.  Sometimes, I have to admit, I am not certain that what I am doing is resonating with people.  I worry that people are not easily locating me and finding my work helpful, but this week I shared a new freebie on FB and over 300 people have downloaded it already!  That is exciting, right?   I am going to share with you today another freebie that I have that I think is awesome in terms of getting done treatment in the best possible place and starting to heal emotionally after treatment.

This week’s podcast sprang from something I have been hearing frequently from people after cancer.  I have been talking with so many patients in the Best Life After Cancer FB Group, and I have found something that many seem to be experiencing that I honestly had not been aware of in my medical practice.  I touched on this a few weeks ago, but wanted to really dig into this today, and provide some suggestions.  It is something that one of my best friends commented on after her treatment, and when I started listening for it, I heard it more and more.   Are you curious to know what all these patients are telling me?  They are telling me they feel empty after treatment.  I have also noticed, across the board, that this sense is more pervasive the longer a person’s treatment is.  I think, like SO many other things, this is multifactorial – not just physical, not just emotional, not just spiritual.  So let’s talk about it.  What sensations, thoughts and feelings contribute to this?  I have a theory on this, that for many people, when they get diagnosed with cancer, they have to put who they are on hold.  They may take a pause from work, stop cooking and taking care of the kids, have someone else take over on house cleaning.  They may have to stop their exercise routine or modify it significantly.  Travelling may not be possible.  Intimacy with their spouse may decrease.  Going out with friends may be put on hold from nausea or blood count issues.  In the place of all of this is a new person with a new role:  learning how to navigate the medical system, making and executing a plan to deal with the cancer.  That becomes first and foremost in life.  A new persona, the fighter, or warrior, shows up to oversee all of this.  It is almost expected by family and friends when a cancer is diagnosed.  You may hear “we’re going to fight this together” or “I’m going to kick cancer’s butt”.  The fighter is fierce and determined, and living in the moment, just getting through each day.  Each chemo down, each radiation down.  Major surgery? Check.  Drains or colostomies or other changes to deal with? Check, and check.  The warrior does what needs to be done, and forges ahead, being positive, staying focused.   The fighter addresses the limitations, and keeps going, because giving up is not an option.  And that warrior keeps telling themselves, just keep going, it will be better, we will be fine, just keep swimming!  And so you let that person take over and the “original you” gets submerged deeper and deeper. 

And then, finally, one day, the day you have been waiting for arrives.  Treatment is finished.  The fighter takes off her boxing gloves and slips off to a well-deserved rest.  But the original you is still submerged, trying to wake back up.  I think of this almost like the movie “Avatar” when the main character flips back and forth between human and Naa’vi.  When he wakes up in his human form, he seems tired and a bit confused sometimes.  And as the old you is waking up, you realize that things have forever changed, and there is no way to go back to just being that old you.  Here’s why.

First, part of this is true physical changes in your body.  You may be literally missing a part of your body that you had before, and have to deal with the physical and emotional aftermath that come from that.  Parts of your body may not work as well or be as comfortable as they were before.  Here I think of range of motion issues, neuropathy, brain fog from chemo.  You may be deconditioned from not exercising, and get tired much quicker than before.    You may have chronic changes in your sleep from new medications.  If you have breast cancer, and are on a hormonal agent, there may now be hot flashes, vaginal dryness, skin and hair changes and mood swings.  So, immediately, your brain begins telling you that you are less than you were before this.  Less whole, less perfect, maybe even less loveable. 

Then come the thoughts from this.  SO, so many of us before a major medical crisis believe that we have many years ahead of us.  We are completely oblivious, or even in denial, that none of us have a guarantee, and that our life could end at any point, with no notice.  But once you have had a cancer diagnosis, you can’t go back to believing you are invincible, that you definitely have 30+ years left on the planet.  It is pandora’s box.  Once you have that knowledge, it is impossible to put it back in the box.  I think of one of the times in life that this happened to us.  We had a pool, with a fence around it.  3 of our 4 kids could swim.  The littlest could not yet.  One day, one of his brothers came in and told us, Mommy, I was so nice to Miles.  His ball went over the pool fence and I taught him how to climb over at the spot where the inside fence meets the outside fence.  Pandora’s box.  I couldn’t unteach my littlest.  The same is true with realizing, for real, that there are NO GUARANTEES.  So our brain continues.  I am less physically, and my life may be over at any time.  Less living casually, without fear. 

Next comes the changes in our lives that happened while we were paused.  Some people lose their jobs.  Some find that while they were unavailable, their friends drifted away.  Some find that their spouse is more distant now, or less interested in intimacy, and for some people, maybe your relationship didn’t survive the process.  It could be that your favorite gym closed, or your favorite instructor left.  Maybe the waitress that always remembered you at your favorite place doesn’t anymore.  Maybe money is too tight to allow travel due to all of the bills from treatment, or there is a global pandemic, or the resort you loved went out of business.  All the things that the fighter was telling you would come back as soon as treatment was done - well, sometimes not all of them do.  Most of the time, a lot do.  But the one or two that don’t – our brains tell us – look, this thing that I was so looking forward to is gone.  And I am not physically what I was.  And I know life is short and there are no guarantees. 

And then also comes a realization that some of what you had before you just don’t want back at all.  Maybe it is the constant rat race from one kid’s activity to another, maybe it’s working 70 hours a week, maybe it’s sweating the small stuff.  But guess what?  All of those things were distracting you before.  You never thought about how you felt because you were too busy running in circles with your hair on fire.  So now you CHOOSE not to let these things back in.  Counters are messy?  No big deal.  Omlets instead of 2 hours working on dinner?  Perfect.  Finding boundaries that you don’t spend 3 hours at work after everyone leaves?  Amazing.  But, again, now you have time that you were filling with busywork before, and it is just there.  And you are a little lost as to what to do with it.  And your brain, always looking for whatever we believe is true, that confirmation bias, says “look – I lost what I was looking forward to, I am physically less than I was, I was slapped in the face that life is short, AND now I have time to sit around and THINK about all of the things I lost, all of the ways I am less, how much risk there is that I still might die. 

And finally, we come to the loss of the new friends that came into your life and made you feel cared for and supported.  At the time, you may not have even realized how much they had come to mean to you and how much you would miss them.  Maybe it was one of the chemotherapy nurses or radiation therapists.  Maybe it was one of the doctors, or the greeter at the front desk.  Maybe it was some of the people in the waiting room on the same schedule that you were.  But often, we come to love the people that care for us or struggle with us, and when treatment ends, those friends play a much smaller role in life.  They say, “you’re good!  See you in 6 months!”, or in the case of the chemo nurses and radiation techs, they wish you well and tell you they hope to not see you anytime soon!  And our perfect, human brains find us more and more evidence that indeed, we are less.  We have less.  Our life is less.  And when we believe we are less, both physically and mentally, we feel empty. 

So what can be done about this?  I have spent a lot of time thinking about how to help with this.  I think first and foremost, we have to be really aware of how we are thinking about this, because our brains find evidence for what we believe is true.  So if you are believing life is less, that is what you will find.  If you believe life is MORE, well, guess what – your brain will go to work looking for evidence that that is true.  Our brains have a confirmation bias and search for evidence for what we believe to be true.  I experienced something similar to this recently.  My dad is 80 and has Alzheimer’s.  We saw him recently, and I had a thought that he is fading, no longer himself.  This led to me seeing that he was frail, and his balance is worse.  He is weaker than he was.  He is more forgetful.  It led to me really feeling horrible and just so sad, with so much resistance to where we are now.  Resisting reality, which always feels like crap, because there is no ability to change what IS.  So I flipped this in my mind.  I asked, “how is he EXACTLY the person he has always been?”  and I left my brain to spin on that for a bit.  He loves his family more than anything, and he always has.  He told me from earliest childhood that family is the most important thing.  How else?  He still loves Maine.  He is so excited to go back soon, and he has always loved to be there more than anywhere else.  How else?, I asked.  How is he MORE now than he ever was before.  He is clearly more patient, sweeter, kinder and more loving than ever.  He always adored us, but now he tells us.  Often.  And you know what?  I am still sad, because I don’t want to lose him, but that feels a heck of a lot better than thinking he is less.  So first.  Control what you are telling your brain to look for.  How are you more?  How are you perfect?  How are you strong? Resilient?  Amazing?  And when your brain says “I’m not as pretty”, you reply to that thought “no thanks”.  “I am less strong and fit” “Nope, not today”.  “I am not what I was” “Definitely NOT”.   “I am less feminine” “uh, uh, keep trying”. “I am learning to love me for who I am, right now, today” “ well, thanks, don’t mind if I do”.  And repeat. Every time the thoughts come up.  And they will, because we are creatures of habit. 

So now we have our brains reigned in.  The second part of this is deciding how you want to INTENTIONALLY fill your life.   Before cancer, you ran around like a crazy from one thing to the next, and then, during cancer, spent a ton of time at doctor’s appointments and treatment.  Now, you intentionally curate the life you want.  Take time to sit down and outline what you want in your life, and then decide what you need to do to make it happen.  For instance, you may think, I want health, so you will prioritize exercise and preparing healthy food.  Recall that there is a survival benefit with mild to moderate exercise, and the goal is 150 minutes per week.  Another thing high on your list of priorities might be connection with family and friends, so you work to make time to connect.  Maybe your family is not great with setting up times to get together.  First, I want to tell you, if you are woman, and have brothers, this will likely fall to you.  All of my friends with just brothers bemoan that their brothers spend so much time with their wife’s family, and little with them.  This is men.  If we want it, we often have to plan and arrange it and make it happen.  Maybe you think, I want peace and contentment.  How do you get this?  I would suggest that you learn to meditate and commit to doing it 20 minutes daily.  For a lot of people, a priority might be that you want to experience what the world has to offer, so you will figure out how to make travel happen. 

And in the same vein, you decide what you actively do NOT want to welcome back into your life.  I do NOT want to run from one fire to the next.  I am going to figure out how to be efficient at work and make sure I get out on time, and leave the stress there.  I don’t want to people please at the expense of my happiness, so I will learn to say “no” when people ask me to do things that I really have no interest in doing.  I will purposefully decide what I do and don’t want to do, and will do things out of love and enjoyment, not out of guilt.  If I don’t want to volunteer, I choose not to feel guilty that I am prioritizing my health.  If I don’t let myself be drug into evening meetings that aren’t really part of my job description, I won’t tell myself I am a bad employee.  I don’t want to spend all weekend, every weekend, on the road, so we are going to limit the sports and activities our children are involved in, and prioritize family time over driving to practice time.  Maybe you realize the 2 hours in the nail salon you were doing was hugely relaxing, and you want to resume, but maybe you realize you would rather spend those 2 hours taking your dog for a long walk!  There is no right or wrong, but you choose what brings joy and you learn what didn’t bring joy, and you work to limit that.  Yep, you probably still have to go to work, but no, you don’t have to go in on Saturdays just because you always did.  Work on efficiency, not spending more inefficient time there.

The bottom line is that you intentionally consider and choose how you want to spend your time.  You maximize the things that feel good, and you minimize the things that don’t.  I believe, 100%, that between managing what you are telling yourself, and intentionally curating a life you love, you will find that the empty feeling is significantly less.  I’d love to hear what you think about this!  Have a great week, and I’ll talk to you soon!