Time heals all wounds. This statement needs a few major caveats.
Yes, time does heal physical wounds. If you are lucky enough to have a highly functioning immune and lymph system. If you have access to proper and affordable health care. If you can stave off infections.
Even with all of the above, healing physical wounds is the easy part. It is the wounds that lie within the mind and the stored memory that time simply cannot contend with.
I have had cancer. Twice. I was first diagnosed with stage IIa breast cancer when I was 35. After multiple surgeries, chemotherapy, and a 10-year-long hormone-blocking medication prescription, I was sent on my merry way. I had been declared ‘no evidence of disease’ or NED. The terms ‘cancer-free’ or ‘in remission’ are no longer used as cancer is considered a chronic disease even when you have ostensibly beat it.
Five years later, despite choosing the most drastic treatment plan – including a bilateral mastectomy the first time – my cancer came back. A lump was found on top of my mastectomy by my oncologist at a regular 6-month check-up. The second time was worse in every way. More surgeries, stronger chemo, the longest course of radiation available. Worse than all of this, is the trauma of knowing that what you thought was squarely in the rearview, can and did come back.
There is solace as a cancer patient in being told where to go, what exactly to do, and how to manage your life on a day-to-day basis. And then one day you are told that you are done and to come back in 3 months. Done? What does that even mean, done? You have just walked (or crawled) through fire and now there is no one to tell you what to do. When you are going through treatment, you don’t have time or the mental bandwidth to think about what is happening to you. You just put your head down and barrel through.
You find yourself floating free in a world you no longer know how to navigate in a body you do not recognize. All of the people who have been bringing you meals, and offering to help with your children, and your errands…they all go away. You are on your own. What. Now?
This is where the mental crush catches you by surprise. All the anxiety and depression you didn’t have the physical capability to deal with during treatment bubbles to the surface and you find yourself drowning.
What makes this time even harder to manage is that "non-cancery" folk expect you to be thrilled that you are done. "You've finished treatment! You must be so happy!" Happy? You are a shell of who you once were. You are some combination of bald, burned, poisoned, stuffed with steroids, and physically weak, and now you are dealing with the unbearable weight of knowing that you have had a real glimpse at your mortality.
While you stand shell-shocked, the world keeps spinning. You are expected to climb back on the wheel and function like the rest of society. But how?
In most cases that I have seen (and I have seen many as a cancer advocate, writer, and public speaker), patients are not given any tools with which to manage the mental and emotional toll that the disease has left in its wake. Your doctors don’t have time for you anymore because their job is to medically treat disease and they have accomplished that. Your community has moved on to the next worthy cause and you are left with limited to no resources with which to manage the aftermath.
No one talks about “The After.” We are congratulated for not dying and expected to move right along. If you have it in you, you dig for resources. Perhaps you search the internet for a local support group, you find your like-kind by using social media hashtags. There are plenty of resources out there, but the problem is that you have to do the work to access them.
I have found that most "cancery" people don’t have the energy or time to do this work so they shove themselves back into their old life like a round peg in a square hole. The trauma that has been endured is crammed back inside the self where it percolates like lava under the surface.
I am here to unveil the ugly truth. Your friend, family member, colleague – they are all dragging a boulder of anguish with them everywhere they go. Our diseases may recede into the invisible recesses of our bodies or bloodstreams, but what remains front and center is the emotional pain of having lived through it.
I am the poster child for someone who seems like they have it all under control and have moved on. I go to work with a smile, I chat animatedly with friends at my children’s sporting events. But I am also a woman who has walked herself to an emergency room 4 miles away from her house in the dead of night while weeping. I have every resource as an educated, well-connected woman in the cancer world, but I still suffer. All the time.
I encourage you to check on your loved ones who have had this disease. Ask them how they really are. Be ready with resources. Let them know that you understand that they are carrying an invisible load. Allow them to feel their emotions in a non-judgemental, safe, and comforting space.
If you or your loved one are facing challenges following a breast cancer diagnosis, here are some valuable resources for individuals affected by breast cancer:
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Breast Cancer Change Champion Grace Lombardo
Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
