Three Ways Expectations That Get In The Way After Breast Cancer
You might have been told to manage your expectations as you report lingering side effects from your breast cancer surgeries and treatments. Booo to that. Let's look at how we can shift from managing to examining those expectations that weren't even yours in the first place. Be sure to check out my Facebook Live video on expectations that are all around a woman as she recovers from breast cancer HERE.
Three Ways Expectations Can Get in the Way of Healing After Breast Cancer
Setup
Comparison
Our Healthcare Culture Regarding Aftercare
How do we examine these expectations rather than manage them? It starts right in the front end of the breast cancer journey.
The first is setup.
You have your doctor’s visit. You get the scan that shows breast cancer, the doctor tells you what you need to know, what to expect, the different types of procedures, and how they’re going to go about it. In this space, women are not normally very present because they’re trying to deal with the fact that they just found out they have breast cancer, and needless to say, it’s very traumatic. Your mind starts racing and goes to extremes. Your body might go into fight-or-flight as if you were being chased by a tiger. The opposite can also occur where you go into freeze response where you can experience moments of fatigue, brain fog, and the inability to make decisions or even really hear what the doctor's saying. So many feelings, emotions, and thoughts bombard the moment that you are sitting with your doctor trying to take in all the things.
Who can remember anything from that visit? Not the tiny details anyway. "Do whatever it takes" and you do. I celebrate you and all that courage and showing up for yourself as you went through all of your cancer treatments and surgeries. There can be quick decisions that are happening, while not absorbing all the information, not even knowing what to ask, and disassociating from the moment because you're trying to survive and get through it.
Throughout your treatment, there are important decisions to be made from reconstruction, to go flat, or to get implants all the while you're in a place of trying to process everything, and the nervous system is in overwhelm. (You are amazing though and you get through it:-)
Many women I’ve worked with have told me that they didn’t know what lymphedema was until they had it. They would go to their doctor and let them know that their arm hurts, the doctor would inform them that they have lymphedema, and refer them to an OT. Meanwhile, they may have had lymphedema for months and didn’t bring it to their doctor’s attention because they didn’t know what it was, or that there was actually something wrong.
There’s this idea that surviving breast cancer means that women should put up with the pain afterward because they should just be grateful that they’re alive. This can push women to put off getting aftercare or even ask questions about their lingering pain and side effects.
There are also cases where the doctor may not be forthcoming with the information of pain after breast cancer to avoid adding extra stress in a time when immediate care, procedures, reconstruction, and surgeries are being discussed. To no fault of the doctor, as they’re doing their job to eliminate cancer, this can lead women to think that once they get through all the treatment, they will go right back to how they were before cancer.
Hence, the set-up.
The second is comparison.
This tends to be an easy one for women to get stuck in because they may know someone else who survived breast cancer. (One out of eight women get breast cancer.)That other woman you know is at the gym, lifting weights, and seemingly doing all the things. They may be carrying on as if the breast cancer didn’t even happen. From the outside they seamlessly slipped back into life, their relationship looks great, they’re working all the time, and don’t look like they’re in pain. You almost can’t help but compare yourself to someone else in their breast cancer journey, especially if you are in a place where you’re still processing and still having trouble doing your daily routine. From my experience working with women after breast cancer, it’s not often talked about, but everyone’s recovery is so different. It really depends on the surgeon, the type of surgery, if lymph nodes were involved/removed, and where your body was at before your diagnosis. All these things that can’t be predicted really dictate how the body heals. This means the comparison is not your friend. This is when beloved communities, such as my Facebook group, allow you to connect with women in different phases of breast cancer and their recovery. Yay for support and community!
Notice that our brains compare automatically. It’s just a part of being human. Give yourself some empathy and compassion in those times. You can notice that your brain does this and instead of letting the comparison consume you, maybe one of those women can be your cheerleader!
Noticing how well someone else is doing can help you remember that there is recovery after breast cancer
Beloved, there is recovery after breast cancer. You just might have to come and get it. What do I mean? Read on Beloved, read on.
Third is healthcare culture regarding aftercare.
The setup that the doctor may have said that you’ll be back to normal after this last surgery, or you only need one more surgery, sets up the expectation that you won’t have pain after breast cancer. None of this is your fault Beloved, it’s just the healthcare system. In the states, if you need surgery and have breast cancer, you did your research, found your doctor that you love and you are in the best of hands. Acute care is what we are good at. Get the person out of severe illness, injury, and disease. We already know that the health care industry is not that great at preventative care but holy moly we are terrible at aftercare. Insurance doesn’t really cover it. We have a very short system of aftercare and if you don’t fit in that model then that’s the part where lots of women fall through the cracks.
Here's an example...say you have pain after breast cancer, you have range of motion issues, and your shoulder catches and hurts. Your doctor may send you to PT and there are incredible physical therapists out there, but at clinics, there are procedures that they follow because insurance pays for what insurance pays for. This means their hands are a bit tied in what they’re able to do. You then find a great PT who has time to do manual therapy or has the expertise and you get a referral. Even in this case, they give you a window of a few times a week for six to eight weeks, or whatever it may be specified. Then if you’re not showing improvement, you get discharged because how insurance looks at it, is that it’s not working. There’s another case where you show too much improvement and they tell you, well you have strength, and you have range of motion so you’re fine. This can happen even if you let them know that you still have pain, you don’t feel well, and you can’t sleep on that side.
These are the instances women fall through the cracks, and again, women are not provided the aftercare that is needed which is a part of the whole healthcare culture. They’re doing the best they can and what they know. This is why I started Beloved Bust™ because I’ve had so many women seek me out to help with the lingering side effects of all of their breast cancer treatments and surgeries. What I often hear from my clients, unfortunately, is that their doctors basically told them they’ve had breast cancer so they’re going to live with pain now as a side effect. This can cause women to be in pain for years and years and not seek change because the expectation was laid out for them by their doctor who is doing their best within the healthcare system. There are so many things that we can do to decrease pain and tightness, soften, ease the tension, soften the anxiety, and get back to feeling more comfortable. No one’s saying you’ll never have pain ever again, but if you have the tools and the insights to know what your body’s doing, know where you’re at, know how much energy you have in a day, and not piling on too many responsibilities at one time you can manage the pain much better. We talk a lot about self-care and what we’re doing is helping the nervous system get out of being stuck in flight-or-flight which we talk about in my course, Reclaim Your Body After Breast Cancer.
We’re noticing that our healthcare culture here in the states doesn’t have a lot of room for aftercare if you don’t fit in those specific groupings. Again, there are great doctors, PTs, and OTs, out there doing amazing work. Here’s an example... we’ll say you’re in the healthcare system and you do great! The cancer’s gone, you get discharged, and they tell you they’ll see you in six months. It may feel like you got dumped at this point because you’ve been seeing all the doctors, going to all the appointments consistently, and being thorough. Suddenly, you’re being told to wait for this big gap of time and in a lot of instances, this is where the anxiety shows up. You’re left with scars, scar tissue, things that show up as pain, and you wonder if this has been addressed. Women tend to ask themselves at this time if they have cancer again. In my programs and with my clients, I talk a lot about what to do when that occurs and how to check in with ourselves. If you’re ever unsure you should always go to the doctor and then with a clear scan, you have that data the next time the anxiety comes up. ("Thank you brain but my scan was clear. Shall we make a cup of my favorite tea?" ) You received a clear scan just a few weeks ago, so you’re safe. Then you can look at how to address the pain, scar tissue, range of motion, and the sense of self, the part of us that’s trying to feel safe.
To recap, setup is when you go to the doctor, they tell you for the first time you have breast cancer, and they walk you through the process. During this time women often don’t remember everything that’s said because the mind starts racing and it’s a traumatic space to be in. Not a lot of information is being absorbed and you have to make a lot of important decisions from that place of fear. What to do? Bring a friend or loved one for support as well as to help remember the specifics from your appointment.
Next, the comparison is when you compare yourself, and your journey surviving breast cancer to someone else who seems to be completely back to how they were before breast cancer all while you may be having a hard time going to the grocery store or completing daily tasks. Work with where you’re at. When your brain brings up how your co-worker is doing all the things and seems to have recovered ...use that as an example of the possibilities of healing.
It’s okay if you need more support because we know that healthcare in the states doesn’t give much attention to aftercare. This is the third expectation that many women are at...so what to do? Seek out support. Use the resources that are available like PT and OT. Schedule a FREE call with me and we can look at where you're at in your recovery journey and how you might get to that next step towards less pain and tightness, peace of mind, and discovering your new favorite self. Schedule your free call with me HERE. I love connecting and hearing about where you are at in your recovery journey!
All the tools we’re discussing in this group and the resources we provide are my specialty. Insights, techniques, coaching so you can reconnect with your body, facia, and scar tissue so you can understand what you’re feeling and why you’re feeling it. Also, learning about your nervous system and what makes you feel good, such as the bath, coffee, a nice talk with a friend, or going on a walk. Making these little adjustments cause a big shift in your nervous system in helping you feel safe on that primal level which, leads to healing with a capital H. Connecting with other women in my Facebook group where I share tools and insights can help no matter what stage you’re in.
Noticing those three areas where expectations can cause women to spiral and/or settle to no fault of their own. Ask for second opinions of PT, OT, and get the scans when you’re worried to know that you are still in the allllll clear. Find that beautiful empathy and compassion for yourself not just when you’re in the initial visits, treatments, and surgeries, but afterward, as you navigate the side effects and lingering symptoms.
There have been lots of different tools we’ve been talking about so here’s your reminder that you’re doing great!
How have these three expectations shown up in your breast cancer journey and recovery? How can you pivot and add a little compassion to your day? Reach out with any questions. I love to hear from you:-)
