Jacquie Angell has faced cancer over 40 years, first as a teenager with non-Hodgkin lymphoma then in 2013 with HER2-positive breast cancer and in 2020 with triple-negative breast cancer. Throughout it all, she has retained her humor, uniqueness and creativity. When we interviewed her for our Can Heal column and asked for advice to give caregivers, she responded, “This may be a better question for my husband, Marc. After all, he’s the one who’s been living beside me and this crazy adventure all these years, and caregivers have their own journey that often goes unseen.”
She then added, “From my perspective as the patient, one of the greatest gifts Marc has given me is that he never made me feel like I became cancer. He certainly took my diagnosis seriously, but he never stopped seeing me as Jacquie. We still laugh. We still make plans. We still argue over silly things. We still live our lives.”
Marc and Jacquie Angell at an American Cancer Society galaCourtesy of Jacquie and Marc Angell
Indeed, the Angells share their experiences publicly through one of their many projects—Side by Side: Two Perspectives. One Journey, a presentation they take to conferences and other events in which they discuss cancer from both the patient’s and the caregiver’s point of view.
Naturally, Marc was happy to share his wisdom for other caregivers. Via email, he wrote:
The best way to help someone with cancer is to be positive, be present, be dependable and be strong when they need strength, but, above all, to be a good listener.
Go to the doctors’ appointments. There will be many. Sit with them during chemotherapy, blood tests, scans, surgeries and procedures. Be there before, during and after. Listen when they want to talk and sit quietly with them when they do not.
And be a good listener.
Yes, I said that already, but I cannot emphasize it enough. Do not assume that you always need to provide answers, advice or encouragement. Sometimes the most meaningful thing you can do is simply listen without interrupting, correcting or trying to solve the problem.
If your loved one has Stage IV, or metastatic, cancer, the journey will become much more difficult and emotionally demanding. You will need to reach into a place within yourself that you have previously only read about or seen portrayed in movies. It is a journey that will test your patience, courage, endurance and faith.
Remain steady in front of the patient, but understand that being strong does not mean pretending you are never frightened, exhausted or overwhelmed—you save those feelings for others in your circle.
Do not make promises you cannot guarantee. Instead of saying, “Everything is going to be OK,” say:
“We got this!”
“We are in this together!”
That is your pledge. That is your promise. Their Journey has now become Your Journey, and you will share it for as long as it takes.
You may also need to become a buffer between your loved one and the outside world. Discuss this with them and develop a communication plan based on their wishes. Decide who should receive updates, who should communicate with family and friends and how much information should be shared.
Well-meaning people sometimes say things that are unintentionally frightening or harmful. They may tell stories about someone who died from the same disease, describe terrible chemotherapy experiences, recommend unproven treatments or repeat discouraging statistics. They are usually trying to relate, but their comments can cause unnecessary fear.
Ask family members, friends and colleagues to contact you first when appropriate. You may need to write update emails, return phone calls, coordinate visits and explain what kinds of conversations are helpful. Your job is not to isolate or control the patient. Your job is to protect their emotional energy and honor their preferences.
Much of the caregiver’s work happens behind the scenes and outside the patient’s earshot. You may spend hours researching the diagnosis, medications, side effects, clinical trials, insurance coverage and treatment options. You may need to verify information, ask questions, obtain second opinions and make certain that important details do not fall through the cracks.
You may also become the central coordinator for appointments. Cancer care can involve oncologists, surgeons, radiologists, infusion centers, laboratories, pharmacies, insurance companies and multiple scheduling departments. Tests such as MRIs, CT scans and PET scans may need to be scheduled well in advance. Orders must be submitted, insurance authorization must be obtained and appointments must be coordinated around treatment schedules.
Keep written records. Maintain a calendar. Take notes during appointments. Track medications, test results, symptoms, questions, insurance approvals and the names of everyone you speak with. When your loved one is tired, frightened, medicated or overwhelmed, you may be the person who remembers what was said and what needs to happen next.
Most importantly, continue to treat your loved one as the person they have always been, not merely as a cancer patient. Respect their independence. Include them in decisions. Laugh when there is something to laugh about. Talk about ordinary things. Make plans when you can. Help cancer remain part of their life without allowing it to become their entire identity.
You do not have to be perfect. You simply have to remain present, informed, compassionate and committed. And remind them, through both your words and your actions: “We are in this together. This is Our Journey.”
To read our interview with Jacquie Angell, see “‘Just Be You’ — Wisdom and Whimsy From a Three-Time Cancer Survivor.”
Jacquie and Marc Angell share their stories through Side by Side: Two Perspectives. One Journey, a presentation they take to conferences and other events.Courtesy of Jacquie and Marc Angell/Gina Main Photography
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