In 2019 after a diagnosis of cancer there’s an almost 40% increase in your 5-year survival rate since the 1960s. So here we are figuring out the challenges of living after cancer treatment. We have to live with health challenges and long term prescription drug support.
We must overcome emotional and physical struggles that non cancer survivors don’t understand and rarely hear about.
But we don’t go through these struggles alone. We go through them with friends, spouses, siblings and children who are also traumatized by what they have to watch, and the fear and helplessness they have to come to terms with.
In this episode we talk about what our support people, our “champions” go through when we are diagnosed with cancer and how we can support them and grow with them during the healing process.
You’ll hear about:
-Four common perspectives of survivors and loved ones
-Steps you can take to talk with your loved ones about their experience
-How your response to cancer can impact the responses of your loved ones
-How to approach and recognize your loved one’s experience
-Where to go to connect to other survivors for support in your recovery
Read Full Transcript Below:
When I was first diagnosed with breast cancer, my sister called to tell me that my 12 year old niece and her friends wanted help baking cupcakes.
They wanted to set up a cupcake stand on the corner of their street to raise money to help me with treatment costs.
Not only was that the sweetest thing ever, but a local news channel showed up and they sold dozens of cupcakes and had a great time.
My mom and dad paid someone to come and clean my house.
My sister had save the tatas bracelets made and my family and bunco girls sold them to help me out financially with treatment.
People I worked with offered to cook for me. They left gift cards, notes and inspirational, healing knick knacks in my mailbox.
My sister took me to every chemotherapy. My friends came over and just laid in bed next me.
This is just the short list because there was so much support and generosity so graciously extended to me throughout my treatment that it would take an entire podcast to talk about everything.
Most of the time, I had no idea people were doing what they were doing until the act was done. Sometimes people asked me what they could do to support me. And I would say, I’m good I just appreciate you asking.
Because I knew something from personal experience. I knew the helplessness of caring about someone who had cancer.
I knew the fear of worrying about losing them.
And I knew the awful feeling of being turned away.
I believe that I flourished because all the love that was poured out to me was healing.
Would I have been fine without the fundraisers and the food drop offs. Yes. Of course. I would have made it work and anyone who knows me knew that.
But I knew they weren’t worried I would go hungry or I go broke. I knew that everything each of them did was their way of saying I love you.
It was something that helped ease their worry because what they really wanted to do...make me well again, was not within their power.
And I knew that if I turned them away even when I was super tired, it would be like someone reaching out to hug me and me turning my back on them.
Now don’t misunderstand. I had healthy boundaries. I took time when I needed it and I let people know when I was too tired and need to rest.
Of course everyone respected those boundaries and they completely understood. They didn’t want to overwhelm me, they just wanted to love me.
I tell you this because just as we don’t go back to normal after treatment neither do our loved ones.
When my brother was dying from testicular cancer we didn’t have cell phones so every time the phone rang I was afraid to pick it up. I was afraid of what I was going to hear and yet all I could do was wait by the damn phone for new of every checkup and treatment and visit from another family member.
Years after I lost him, I got that horrible phone call from my youngest sister. She had cancer. And know I knew up close and personal what that meant. Of course I wanted to fix it for her and of course I couldn’t.
So I tried to be there in every way I could including just giving her space and time to process. Respecting the need to absorb what’s going on is also a supportive act.
I’m telling you all of this now because when you’re healing after cancer, it’s not just your body, your mind, your spirit that needs to heal. But your loved ones need to heal too.
They mirror our process. When we’re diagnosed and afraid, so are they. When we want to deny what’s happening and talk about it as little as possible, we shut them down too or sometimes we just shut them out.
I’m not saying that’s bad, I’m just saying these e things that happen.
If we feel sad, and scared and victimized, they want to protect us.
One time, I was on the phone with a newly diagnosed woman and she was absolutely terrified by her diagnosis.
She couldn’t understand why this happened to her because she was a good person and did all the right things and she was so upset she became hysterical.
Che couldn’t speak coherently and I felt awful. It was not a good situation and we were on the phone so it was really difficult to get her to listen.
As she became more and more upset, I could talk over her and I certainly wasn’t going to hang up on her. So I just waited, and tried to reassure her. But her husband came into the room and took the phone from her and demanded to know what I was telling her and why I had upset her so much, holy cow it was just awful. But I knew he was terrified too and he just wanted to protect her.
Fortunately I was able to talk with him and we were able to calm her down and get her a referral to a social worker where she was being treated so she could get the care she needed.
But the point of that story is that he was going through this too. He was suffering and scared right along with her.
If you follow me on social media, you’ll see that I posted a story this week about a gentlemen who purchased my online course because he wanted to learn everything he could to be able to support his wife.
These people are our champions ladies.
They have our backs, but they also have a heavy burden and this show is about how we bridge that gap after treatment.
We’re going to take a look at the barrier that is often created between us and our champions when we’re going through cancer treatment and the actions that we need to take to help them along the healing process with us.
Cuz we love them too and we have to recognize their pain and fear and heal together.
So, after working with lots of cancer survivors here is my completely unscientific theory of what happens after treatment and how what we’re going through impacts the people around us.
I have seen 4 general perspectives when working with survivors.
I call the first one searchers-- these women are desperately searching for an answer to why, why did this happen to me, what can i do to change it, what does the research say, did my doctors do the right things...it’s a tough spot to be in because its loaded with fear and it keeps you stuck.
If all your energy is going into what went wrong in the past, it’s really hard to let shit go and move forward.
If you find yourself here, your loved ones will generally feel very protective. They want to guard you and reassure you and your relationships can shift because they’re worried for you, they want to take care of you, but they also want to move forward, to life after cancer and you’re having a tough time doing anything but looking back. (again this is said without judgement.) if this is where you are then it’s where you are. I just want to bring some awareness to what could be happening so you can recognize it.
The second perspective I see is that of a victim. The thoughts here are I am a victim, I am powerless, there’s nothing I can do to help myself, I did all the right things and shit happened anyway and it’s probably going to happen again. You might hear yourself say things like I had the worst kind of cancer., mine is the hardest to treat, mine almost always comes back, and other similar statements.
This perspective is also deeply rooted in fear. And guess how your champions feel when you’re in this place...terrified...they’re super afraid. When they see you feeling powerless and convinced of unfavorable statistics, they’re scared.
They probably will never tell you they’re scared because they don’t want you to think they’re not being supportive and let’s face it when you’re the one who didn't have cancer, it's hard to understand, your concerned about saying the right thing, and you’re going to try to be strong for your loved one.
In both of these situations you need two things to help you and your loved one move past this fear and this feeling of being stuck
As the survivor, you need to work on your perspective. You didn’t come this far to live in fear.
So start with the end in mind. Meaning decide on the life you want to lead and then begin to learn and seek out the support that will help you behave like that person.
Spend some time educating yourself on positive statistics and behaviors Look for ways to climb out of that feeling of powerlessness and find small ways to feel empowered over your health or to change the thoughts the thoughts that are keeping you in this place.
When you do that you can give your champions what they need to feel safer too. Which is compassion. When you feel stronger and more empowered, you’re more able to listen to their fears and understand their feelings of protectiveness...maybe even over protectiveness and fear.
In fact talking together about the fear and powerlessness you feel can actually help you to get on the same page and work together to support each other in thinking and behaving in healthier ways.
A third perspective I see, mostly from a distance because these ladies are hesitant to work on anything after treatment. These are the deniers. They don’t want to explore how they feel about what’s happening, they don’t want anyone else to act like anything has changed, they just want to cut this out, no pictures, no posts, no talking let’s move on.
And I get that. But the fact is that something did happen. Something is happening and it’s still scary to those around you only now, they don’t know what the heck to do.
Should they tell you they’re scared. Will that bring you down? Can they tell you that they want to support you, will that piss you off. Basically, they feel like they have to ignore their feelings too. Because you don’t want to talk about it and that can result in a lot of distance.
Not just between you and your loved one but between you and your own body.
It can result in a lack of attention to what is affecting you, how you’re feeling about things and following up or calling attention to the things that happen in a body after cancer they may need to be followed up on. Again...this is a fear based place. And it can result in that person who wants to be your champion feeling isolated and frustrated.
The fourth type of perspective i see are the transformers, the women who come out of a treatment with an energy and a passion to take on the world. They feel a need to give back or create something or pursue something they’ve put off for too long.
These women instill confidence in their champions and for that reason they’re met with a lot of support and encouragement.
Now here’s the interesting thing. I just explained this in a really simple way matching each survivor stage to the loved one stage.
But that’s not how it always works.
What if you’re a denier and your loved one is in protector mode, or you’re a transformer and your loved one is in ignoring mode?
Any combination of these conflicting perspectives can cause some real problems in friendships, parent child relationships or romantic relationships.
So what can you do to facilitate healing?
The first step is to recognize that your loved one has been traumatized too. Not in the same way as you but they’ve still been through an extremely difficult experience. Acknowledge their position of powerlessness, and share you’re honest feelings of your own powerlessness.
That’s actually a common bond that we share with our loved ones and often don’t recognize or talk about. A lot of growth can come from that conversation alone.
Approach your interactions with the same compassion you want to be approached with. Recognize that it’s ok for you to be in different places in the healing process and that you might each trade off taking the lead to move forward or find more support.
When I was going through chemo, my youngest son was 12 years old and it was very clear that he was avoiding me. We had always been and still are very close but once i lost my hair, he suddenly wanted to spend more time at his dad’s house.
He didn’t cuddle up next to me when we watched movies, and I knew that the way i looked scared him. Not in the sense of me looking scary...well maybe a little but it scared him because he thought that’s how sick people looked before the died.
Even after we live through treatment, friends and family sometimes remain distant because they’re trying to shield themselves from the fear of loss, it’s not personal, it's not that they don’t care. It’s that they don’t understand.
So step two is education.
People who haven’t had cancer usually think its a death sentence. Because it was for so long...but that's just not true anymore and if you’re noticing distance in your loves they might need you to help them understand that.
Eleanor Roosevelt said, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face”
And I’ll add to that by saying you gain closeness with those you love when you share your fears and look at them together.
I believe that the healing that has to take place between you and your support people is so critical that I built that work into my REVIVIFY program because it’s real, it needs to be acknowledged and it can be tough to work through.
Because after all you’ve been through, you often have to be the one to take the lead in changing people's perspective of your ability to thrive, acknowledging the fear and closing the gap by being supportive and compassionate toward their experience and educating yourself and your loved one so you can move forward purposefully and intentionally in your lives.
It’s not unusual for me to hear women say they feel distant or misunderstood after cancer treatment and I’ll say, of course you do! No one knows what that experience is like unless they’ve been through it.
When my brother had cancer it was awful and I was worried and I hated to see him suffer. But when my sister had cancer I was already a survivor so i could identify with her on a completely different level.
So think about that and consider how you can manage your expectations of the behaviors and responses of the people who support you in the best way they know how, with their limited experience.
If you want to connect with other survivors find the breast cancer recovery group on Facebook and join us. Introduce yourself and hear from other survivors who do get it and who can help you to heal yourself and create stronger champions along the way.