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patient-experiences

Patientenerfahrungen

Im Gespräch mit Dr. Christina Hibbert

02. 05. 2020, Eschborn, Germany.

Treatments in hospitals are postponed, social-distancing, lockdowns, and a recession are the topic of day-to-day discussions. We are all dealing with uncertain times. But are the most vulnerable groups left on their own? Dr. Christina Hibbert, clinical psychologist, author, and breast cancer warrior, is sharing the challenges she is facing during this outbreak.

Christina, thanks for sharing your insights and creating awareness for this important topic. Can you please give us a brief overview of your current state?

I was diagnosed in July 2019 with Invasive Ductal Carcinoma (IDC), triple negative, breast cancer. Triple negative IDC is the most aggressive type of breast cancer and will metastasize if not treated quickly and aggressively. I also learned I am positive for the BRCA1 gene mutation, meaning I’m at risk for other types of cancer as well. I underwent a double mastectomy with reconstruction surgery one week after diagnosis, had both the breast reconstruction exchange surgery and a hysterectomy in September, started chemotherapy in October, and completed chemotherapy treatment at the end of December, 2019. I was able to do “coldcapping,” which freezes the scalp during chemo, and save most of my hair. Unfortunately, I also had several complications, including a staph infection causing my right implant to be removed at the end of September, another infection causing my left implant to be removed at the beginning of December, and then blood clots and kidney stones from chemotherapy. My sixth surgery in seven months, to remove the kidney stones, was in March, just after the COVID restrictions began. Though I am “done” with chemotherapy and do not require radiation, I am still receiving treatment for these other side effects and will need at least two more surgeries to re-attempt breast reconstruction.

What was going through your mind when you had to postpone your surgery and how did you cope with the news?

I had finally been “cleared” to re-do my breast reconstruction surgeries starting the first week of April, when COVID restrictions began. Because of blood clots and kidney stones in the months after chemotherapy, this clearance took much longer than I’d originally hoped or planned. The week before the surgery date, the hospital called and “registered” me for surgery. The next day, they called and cancelled. All “elective” surgeries in Arizona had been postponed. They call my surgeries “elective surgery,” but I can tell you there’s nothing “elective” about having to completely re-do breast reconstruction after a double mastectomy. Needless to say, I was heartbroken. This meant I’d have to push back my treatment completion even longer, but I also knew there was nothing I could do to change things at that point, so I gave myself the day to cry, write about it, talk it out with friends and family, and just feel sorry for all I have been through and then, the next day, I got up and kept going. A huge part of being a “breast cancer warrior” is simply adjusting, over and over and over again, to each new treatment, development, complication as they come. It’s constant adjusting—to a new body, a new mind, a new life, and eventually, hopefully, a new “normal.”

What resources have you been going through? What do you recommend to other cancer patients during these times?

Honestly, I haven’t had many “go to” resources during this time other than, for BRCA gene testing, Myriad Genetics is the only way to go. Their website is even being upgraded as we speak to offer greater support to those ready to learn about their genetic makeup in order to prevent cancer. My older children are being tested for the gene next week. When I need “cancer information,” I turn to Google and find whichever article, from a source I trust, seems most helpful. Emotionally, I have felt a lack of good support resources, so I have been sharing my journey and all I’ve learned, including articles and videos, on my website, and social media channels, especially Instagram & Facebook. I also started a Facebook support group for women dealing with all types of cancer, “Growing Through Breast Cancer.” It’s a place we can share our experiences and emotions, and receive advice and support from others who truly “get it.” That’s one hard thing about this quarantine time: the support many of us might have received from friends and family prior to COVID has significantly diminished as others are dealing with uncertain times themselves.

What are your biggest concerns regarding the coronavirus and your treatment?

I am grateful I completed chemotherapy before now, as I know so many who have had to go through that intense process alone and afraid because of COVID. I am still, however, at high risk of contracting COVID, being only 4 months post final chemo, so I am staying home and being ultra-careful, and my family is as well. For my treatment at this point, my check-ups, scans, surgeries, and planning for “life beyond cancer” visits have all been postponed. It worries me to wait for these appointments. Even though I should, in theory, be “cancer free,” it is hard to feel that way when you can’t even get the tests or have the visits with the doctor to even know what the future is supposed to look like beyond cancer. And until I have my reconstruction surgeries, I’m not “done” with treatment anyway. It’s frustrating to not be able to receive the treatment I need when I need it, to have to wait, to feel like in some way I’m “electing” to do the surgery, to not know when this will all be over so I can resume treatment. I never thought I’d WANT to have cancer treatment, but I, and so many other cancer patients, do. And COVID is in our way.

You mentioned that you had to spend extended periods of time at home, even before this pandemic. What advice do you have for people who are just getting used to this lifestyle?

I have been home for the better part of the past nine months recovering from surgeries or chemotherapy, with most of that time sick or in pain, in bed. It can feel isolating, lonely, boring, and get old pretty quickly. Focusing on the “why” of being home can make a big difference. My “why” was “so I can truly heal.” For many dealing with COVID quarantine right now, the “why” is likely “to protect my family and keep others safe, too.” Whatever your “why” is, remember it, focus on it, and remind yourself often. Then, focus on the blessings—quality time with family, time to rest and catch up on sleep, and even the blessing of being healthy while being home, not sick or in pain, like myself and other cancer, and now COVID patients have been. I realized at some point that one benefits of breast cancer putting my “life” on hold for so long is that I now have the opportunity to decide what my “new normal” will look like. The world has this opportunity now, too. What will we allow into our daily lives after this? What will we change? How will we use this to grow? 6. What are the biggest unanswered questions you are asking yourself? The biggest unanswered question I have specifically related to cancer is, “Am I truly cancer free? And how long will it last, if so?” That’s a question that will unfold with time, and hopefully as we get out of quarantine I’ll be able to visit the oncologist to find the beginning of these answers. The other biggest question I’ve had throughout this entire breast cancer journey is, “Who am I now?” “How is this changing me?” “How will this be part of me moving forward?” I’m learning that cancer does change you— permanently. I’m only beginning to understand what that looks like for me. I think many are asking similar questions, or will be, from this corona quarantine, too.

What are your thoughts on support groups? Are you involved in any?

Support groups can be incredibly valuable. I started attending a local group a couple of months ago; I was too sick with treatment before then. I also started psychotherapy right after I was diagnosed. Both of these have been an essential part of my healing experience, helping me deal with the trauma, loss, and grief of dealing with cancer as well as how to navigate the physical symptoms, my relationships as a wife, mother, and friend, and how and when to return to my own work as a psychologist, author, and speaker when the time is right. I am actually surprised how many people dealing with cancer either don’t have the means or availability of cancer support groups or therapy, or simply choose not to reach out for help. Many see cancer as a “physical problem,” but soon learn it’s as much, if not more so, a mental and emotional and spiritual issue, as well. Many don’t learn until much later how much they need support from a support group, therapist, or other supports. Even with a great social support network, there are times when you just feel ALONE. Like no one understands, or like everyone expects you to feel or act or BE a certain way when you just don’t. I started the “Growing Through Breast Cancer” Facebook group for these exact reasons as a way to start to fill this gap.

How do you feel about the current messaging in the media about Covid-19 and cancer?

While I’ve been grateful to see messages about cancer and COVID-19, I wish there were more powerful messages out there—messages sharing the reality cancer patients are facing, talking about how difficult it is for patients to receive the care they need, how they’re doing it all alone, how surgeries aren’t happening because they aren’t considered “essential,” and how it leaves us not only incredibly vulnerable from the coronavirus itself but also highly vulnerable to intense fear, anxiety, and worry, because our treatments are put on hold. I’d like more “reality” and less facts and statistics, more emotion and “how it really is for cancer patients,” and not just, “We’re all experiencing the same thing.” We’re not. Cancer patients are suffering so much more than the media is portraying. Cancer patients, I have learned, are experts at “making it seem better than it is.” We want to portray the positive, “warrior” image; we don’t want to flood the world with the pain and struggle and fear, and the reality of dealing with cancer, because it’s so often perceived as being “negative.” And we especially don’t want to add more “negativity” to the world when it’s already so inundated with fear and anxiety from COVID. However, as a psychologist, I’ve learned it’s not “negative” to share what’s REAL. It’s not “negative” to show what’s actually happening—to show the struggle, the obstacles, the emotion of it all, AND how we are dealing with it. In fact, I’d say showing the “reality” of dealing with cancer during COVID is ultimately empowering, as these incredible warriors overcome the toughest of challenges in the toughest of times. I’d say that’s actually more “positive,” and helpful, than not showing what’s real.

Christina’s Links:

Website: www.DrChristinaHibbert.com

Instagram: http://www.instagram.com/drchristinahibbert

Facebook: http://www.facebook.com/drchibbert

Facebook Support Group: https://www.facebook.com/groups/growingthroughbreastcancer/

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