You’re not alone if you’re a cancer survivor feeling adrift in survivorship. You’re so engaged with your cancer care team during diagnosis and treatment because you’re at the clinic almost weekly, you hang out in the infusion room far more than you’d like, you get surgery, you get more treatment and have many more visits with multiple providers…and then you’re done.
The medical whirlwind abruptly stops and the stillness is almost uncomfortable. It doesn’t feel like you’re doing anything to get rid of this thing. Do you need to struggle and worry? Can you relax?
You anticipate your survivorship visits with hope and anxiety. You have so many questions and thoughts to share.
“How will I know if it comes back?”
“What should I do to keep it from coming back?”
“I want reassurance. I want a guarantee.”
“What’s the best thing for me to eat?”
“Can I exercise?”
“I want to feel how I used to feel. I want to feel happy and calm.”
“What can I do to get my energy and my life back?”
I hope you get the answers you’re looking for in your survivorship visits. But I have a feeling you may not.
If you’ve followed Brio for a while, you know my story. Cancer survivors came to me in survivorship and asked me those questions for many years. I answered with statements like, “Eat well, exercise, and everything’s going to be fine. See you in three months.”
Yep. That’s what I said.
Terrible, I know.
I finally got frustrated enough to educate myself and start telling people exactly what to do after cancer. The results were astounding.
Cancer survivors felt better, even energetic and effective in their lives. And maybe most important of all, survivors felt satisfied they were doing everything possible to prevent the cancer from coming back. That’s a feeling of control. Finally being in control again leads to a sense of well being, even if you can’t see the future, even if you don’t know exactly what’s going to happen in your life.
But why didn’t I tell them exactly what to do from the beginning? That’s a great question.
It’s my deepest hope you’re getting all the tools you need to take care of yourself after all you’ve been through. I know your team wants that for you. But if you’re not getting it, I bet you’re frustrated as to why.
I’ve thought so much about this and I’ve watched my colleagues and lived in our medical system for 17 years as a Nurse Practitioner. Teaching people to stay well after cancer should be the most important priority we have, but it isn’t. I believe these are the reasons it’s not.
Our medical system is disease focused.
Western medical practitioners are taught to identify a problem and then solve it. Somebody doesn’t feel well so we diagnose them and find a medicine or procedure to remedy the illness.
This is an absolutely fantastic thing when you have a life threatening disease. We are incredibly good at fixing it, getting better and better every day.
But if you’re cured of your problem, we don’t quite know what to do with you. What are we supposed to prescribe?
Eat well, exercise, don’t worry. See you in three months.
Cancer Survivors are easy.
Hematology and Oncology is a rigorous, challenging field. We give very sick people medications that can kill them in an effort to cure them. All of us nurses and doctors absolutely lose sleep over this. We are harried and frazzled and worried. And when you are cured it is our joy and inspiration. You are our heroes!
When you come to the clinic for a survivorship visit, it is a pleasure to see you. We want you to be well and we don’t want to talk about the lingering fatigue and pain you suffer from, the byproducts of our medicines. We just want to chat. We want to hear that you are enjoying your life.
Because you’re the easy patient that day. You’ve already been through the hard stuff while the patient before you is in the thick of it. And the patient after you is not going to be cured and we’re going to have a really hard talk with them about that.
I’m not saying this is right or puts you in the center of the care where you should be. But for your team, on certain days, your visit is the easy one and they don’t want it to be hard. And your wellness needs take a back seat because of it.
Your team doesn’t have the knowledge.
You might assume your cancer care team received specific training around nutrition, exercise, and mental health for cancer survivors.
They may have, but mostly likely they have a general knowledge, unless they have a very keen interest in the topic. So they convey that general information to you, hopefully information backed up by research data.
But there is no published, specific program we have access to that is packaged for our patients to follow to the letter and get great results.
So you, the cancer survivor, receives a few brochures filled with general information and you go home and try to figure it out on your own. It’s not ideal.
Cancer survivors need a clear path to follow, with mindset work around achieving wellness goals, specific meal plans, exercise plans, mindfulness plans - and a real community of cancer survivors to work alongside and support you. Don’t you agree that’s what you need and deserve?
Yeah, me too. :)
The sickest people get the resources.
This is a hard reality of our strapped medical system. People who need expensive procedures and medications use a lot of medical resrouces, both staffing and dollars. And people, like cancer survivors, who are over the hump get less, simply because there are bigger fish to fry.
Healthcare resource allocation is a hard topic and I believe it’s right to make sure all people get the care they need no matter the cost.
But resources are finite.
Again, not saying it’s logical, but it’s a reason we don’t have the room to create that awesome, specific wellness program for you and scale it to make it accessible to everyone who needs it.
The ironic thing is that what makes cancer survivors feel better after cancer also keeps you well and improves your health outcomes, saving the health care system money in the long run. Of course the results are less immediate, less fancy, definetely not cutting edge, and ultimately less profitable.
The result: no wellness program for cancer survivors. It’s something that needs to change.
Your doctor doesn’t know how to take care of herself.
Medical professionals work too much, sleep too little, have no time to exercise, have high levels of stress, are at risk of substance abuse, and eat on the run.
I know you’ve sensed it. Your doctor comes into your room and can’t quite remember what’s happened in your care. She’s disheveled, has gained weight, and looks exhausted.
I am guilty of the same, trust me, but I try really hard to do the right things for my health because how can you take care of people well when you don’t take care of yourself?
Furthermore, how does a provider know what to tell you when they don’t know where to start themselves?
This is a big reason I think cancer survivors don’t get good wellness care from their oncology team. If your oncologist gave good wellness care, they would be forced to look in the mirror. And that’s a really hard thing to do.
But they must, for your sake and their own.
So where do you go from here? I hope your cancer care team has overcome some of these barriers to providing you great wellness information and support. If you need more help, Brio is creating an online program for cancer survivors coming Spring 2019. I can’t wait to offer it to cancer survivors derailed by fatigue who need a clear, science-based path to vitality and well being.
If you’d like to start right now, check out Brio’s FREE Morning Checklist. It includes 7 easy tasks to give cancer survivors more energy right now. Click the button below to download!
Take care, Survivor.