A caregiver's advice for dealing with cancer
Being a caregiver to a cancer patient comes with a lot of responsibilities. To help, we’ve put together information on many of the biggest challenges caregivers take on, including how to manage medications, communicate with your loved one’s medical team, deal with legal and financial issues and handle medical issues you may encounter.
Cancer treatment usually involves taking a lot of medicine. On top of drugs that attack the cancer, patients may take medications for pain, nausea, low blood counts and other treatment- or cancer-related symptoms. Some patients may take up to 20 pills a day. Keeping track of these medications can be a challenge. With some organization, you can make sure loved one is taking the right medication at the right time. Learn more about managing medications.
Taking care of a cancer patient
Cancer patients spend less time in the hospital and more at home than ever before. This means caregivers do jobs that used to be handled only by trained health care professionals. To help, MD Anderson offers information on managing common cancer symptoms and performing basic medical tasks at home.
- Constipation: Prevention & self-help for severe constipation
- Pain Management
- Nutrition, including loss of appetite
Communicating with the health care team
Many cancer patients need help talking with their care providers. Sometimes it’s because of age, sometimes because of illness. In these cases, the caregiver steps in to help listen, ask questions and let the team know how the patient is doing. Here are some simple steps care providers can take to make these conversations as effective as possible:
Try to keep good notes of your appointments from the beginning. Most patients and caregivers are overwhelmed by what they’re going through. Keeping a record of what you’ve been told can help you cut down on miscommunication and remember what you need to do.
Ask questions. It’s the health care team’s job to help patients and loved ones understand the condition, its treatment and its side effects.
Don’t expect yourself to remember every question you have for the doctor. Write them down in a notebook and bring them to your appointments.
Use that same notebook to take notes during the appointment. It will be easier to go back to these notes than to call the hospital about something you forgot.
MD Anderson patients have access to the MyChart system. This online tool allows patients and caregivers to send secure messages directly to their care team. These messages are for non-emergency situations only.
Legal and financial issues
Handling the paperwork that comes with a cancer diagnosis is one of the biggest jobs a caregiver takes on. Here’s what you need to know about:
I am a numbers person. So, when my wife, Emily, was diagnosed with non-Hodgkin’s lymphoma in August 2013, I turned to the internet for some statistics. I quickly discovered that online research is a double-edged sword.
On the one hand, I could educate myself about my wife’s disease. I learned about things like CD19, a biomarker that can factor into the development of lymphoma. But I also saw one word used over and over again in reference to outcomes for people with the same diagnosis as hers: “dismal.”
That was devastating. At the time, Emily was only 32. We had three young children.
Why we turned to MD Anderson
Emily and I actually felt very good about the care she was receiving for her non-Hodgkin’s lymphoma near our home in Kansas City. But when Plan A failed — and we realized that the path forward (an allogeneic stem cell transplant from an unrelated donor) could change our lives forever — we decided to seek a second opinion.
That’s when we turned to MD Anderson. It’s a giant hospital, but the sheer expertise of its physicians makes you want to go there. And all its doctors do is cancer, so they are the best in their fields.
Accessible doctors make the difference
On our first day at MD Anderson, we met with lymphoma specialist Dr. Frederick Hagemeister and stem cell transplant specialist Dr. Yago Nieto. We were also able to meet with Dr. Sattva Neelapu — the researcher whose CAR T-cell therapy clinical trial Emily would ultimately join — just 30 minutes after Dr. Hagemeister called him. And when I emailed Dr. Hagemeister on the plane ride home, I got a response before our flight even landed.
Having that kind of access to your doctors really helps calm your nerves, because you know the next steps and how to prepare for them. Dr. Neelapu always broke stuff down in such a way that even my non-physician mind could understand it.
How ‘my care team’ made life easier
As Emily’s primary caregiver, one of the things that helped me most was the group of MD Anderson employees I jokingly referred to as my care team. Everyone from the physicians and nurses to the social work counselors, insurance and billing staff and case managers made things so easy. They helped us find a place to stay during our first visit, locate an apartment to rent while Emily received treatment and arrange things we’d never even think to ask about, such as transportation.
It’s really hard to keep everything together when you’re 750 miles from home, but adrenaline is a pretty amazing thing. I was juggling offers to help, making Emily’s treatment decisions, trying to keep the kids’ lives normal and managing that pesky thing called work. It was overwhelming and totally exhausting. But I never wanted to look back with regret five or 10 years down the road and say, “I wish we’d done this.”
‘An entirely new sense of hope’
Thankfully, after three years of nothing working, MD Anderson gave us a new sense of hope. The CAR T-cell treatment Emily received there had never been available before in human history. So, I’m convinced that God put us in the right place at the right time.
Emily was only the second patient at MD Anderson and the third one in the world to receive CAR T cells to treat non-Hodgkin’s lymphoma on that clinical trial. And today, almost five years after her diagnosis, my wife is still alive — and cancer-free.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.