Long-term Caregiving for a Metastatic Patient

It is a lucky breast cancer patient who has a caregiver as good as Linda Holden. From the time her husband, Bob, was diagnosed stage IV de novo in 2003, until his recent passing, Linda had been his full-time caregiver.

Becoming an advocate

Linda has used her experience to become an advocate for Male Breast Cancer and Metastatic Breast Cancer. A Project LEAD Graduate from 2017, she volunteers with the Male Breast Cancer Coalition and the American Cancer Society - Cancer Action Network.

Linda agreed to answer questions about her caregiving role.

Q: You married Bob around the time of his diagnosis. Did you understand what lay ahead of you?

A: No, I don’t know how anyone could. When Bob was diagnosed with stage IV breast cancer, he was told he would live 24-30 months. I mean, to be told 24-30 months! It was overwhelming for both of us. Of course, more so for Bob. Bob had just turned 41 years old. We had been together for about six years at the time of his diagnosis. Bob broke up with me, he wanted me to go on with my life. A couple of months later we got back together and were married in Hawaii.

Q: Did you find much emotional, spiritual, or practical support from friends and relatives?

A: When Bob was diagnosed with advanced breast cancer we had so much support from friends and family. As time went on, support started to slow down. People go back to their lives and think you had your treatments and you are cured. Unfortunately, in most cancer patients, this is not true. Especially with advanced breast cancer. Bob had cognitive and memory issues, neuropathy in his legs and feet, and bone pain from his metastasis. Because of all of this, it was hard to socialize with our friends and family the same way we had before. We didn’t really have “couple” friends anymore. Friendships take time and energy, and being a caregiver it was hard for me to nurture my friendships. Some friends are there no matter what, and I am very grateful for them.

Q: You wrote in your Health Union article on caregiving, a couple of years ago, about the challenges of the high care necessary for Bob’s declining health. How did the obviously stressful last two years pan out?

A: The last two years of Bob’s life were definitely the hardest and he had the most complications. Bob broke his leg, he had a full cast, short cast, and a boot. When he had the boot, the bone was drifting so he had a rod put in his leg. This is when the complications really began. Bob developed an infection from the rod in his leg, so he was on antibiotics for a year while they decided what was best for him. The option was, stay on antibiotics for the rest of his life, or remove the rod. Bob’s doctor’s finally agreed the rod should be removed, and so it was removed. Then Bob had a bone infection in his big toe, which eventually led to having it amputated to stop the infection from spreading. He also ended up in the hospital a few months before he passed away, due to a blood infection. During all of this, he was still undergoing treatment every three weeks for his advanced breast cancer.

Q: How did you keep up to date with the latest medical treatments to help extend Bob’s life? 

A: I felt it was so important to learn everything and anything I could about advanced breast cancer and male breast cancer. I searched for organizations that dealt with advanced and or male breast cancer. We started going to conferences, summits, you name it, I wanted to go. Bob loved to travel, so he was always up for it. He may not have participated as much as I did, but we were a team. I remember hearing about drugs that were in clinical trials at the conferences. Then when they would get approved, we would always discuss them with Bob’s oncologist. I have always believed that “knowledge is power”.

Q: Often help is available to give caregivers an occasional day off. What else would make life easier for caregivers?

A: Caregivers do so much for their person. They do it because they want to, but I don’t think people realize how isolating and lonely it can be. Having support from others, in every way, would be so helpful to all involved. Don’t just say you will offer support in ways like spending time with them, food, errands, whatever the need may be, do it! Follow-through is so important. Many times, it is left to the caregiver to reach out and ask, and they don’t have the time or the capacity to do so.

Q: Have you yet come to terms with your new normal? 

A: I don’t think I will ever come to terms with my new “normal” if there even is such a thing. I am learning to live with the grief of losing Bob. Grief never goes away, you just have to find a way that it fits into your life. I find some strange comfort in knowing that grief comes from love. if we didn’t love we wouldn’t grieve. When Bob died, I felt I had lost my purpose, I was no longer a “caregiver”. I am still finding my purpose, but I do know it will always involve advanced breast cancer and male breast cancer advocacy. I want to be a voice for those that can no longer speak, especially for my Bob.

Caregiving never ends

Linda spent 17 years caring for Bob. She once said, “the one thing I want people to know that being a caregiver for someone with advanced breast cancer is: it never ends". Well, it has ended, and Linda is now keen to use her experiences to help others who find themselves in her situation. And, she admits, writing about her experiences is a part of the healing process.