Finding Support When Your Cancer Is "Different": Friends, Family & Inflammatory Breast Cancer

Patient Expert

When I was at my parents' house over Thanksgiving, my mother gave me a bag of letters and cards that she didn't want to throw out. So now I'm looking for a place to stash over 10 years of Mother's Day card, thank you notes, and assorted memorabilia. In the stack were printouts of some emails I had sent when I was in treatment for inflammatory breast cancer in 1998 and 1999.

Reading them again reminded me how important friends and family are when you are fighting for your life.

Everyone's situation is different, of course, but here are a few things I've noticed from both my own experience and my friends'.

1. People often don't act in the ways you expect.

Someone you were sure would be a solid rock for you starts pulling away. A neighbor you hardly know offers to baby sit while you are at the doctor, and she follows through on the offer. Eventually, I realized that their reactions weren't about me; they had more to do with people's previous experiences with cancer and loss. Your very best friend may hurt so much at the thought of losing you that she gives up your friendship while you are still alive to avoid the potential pain. Your neighbor may be "paying back" aid her family received in a crisis even though you weren't the one who helped her at the time.

2. The decision of how much to tell folks is in your hands.

You don't owe an explanation to anyone outside your immediate family. Once people found out that I was having chemo, surgery, and radiation, they didn't need me to tell them I had an aggressive cancer.

Like many people with IBC, I was shocked to find out that a person can have breast cancer without a lump, and I became missionary-like in my zeal to let people know that you don't have to have a lump to have breast cancer. The downside of telling people about IBC was discussing the aggressive nature of the disease.

I was especially reluctant to talk about that part of IBC at work. I had just started a new job and didn't want to advertise the high probability that I would have a recurrence. If you don't want to talk about it, develop a few standby phrases, "We're taking it a step at a time," or "I appreciate your concern. Please keep me in your prayers." When I finished treatment and people asked me if I was cured, I usually said, "My last check up was fine."

3. Consider using email to share updates on your condition.

It is emotionally draining to have to rehash all the latest news with each person separately. You could also designate one person in each of your circles to be the news sharer, so that people at work know that Mike will have the latest news on your progress, and your extended family will know to contact Aunt Bev.

4. You will need practical items like rides to the doctor, childcare, and meals.

People are going to say, "Let me know if I can help." When they do, mention some of the help you will need and see what they might be willing to do. Make a list of names and phone numbers of those who have offered assistance. Be realistic.

People have busy lives and can't drop everything to be at your beck and call. So ask the person who likes to cook if she could bring some meals by for your family while you are in the hospital. Ask your retired neighbor for a ride to the doctor. I was reluctant to ask for help. I realize now I should have asked more often. Most people really do want to help and doing something concrete for you makes them feel useful.

5. You will need emotional support.

I am so fortunate that my husband is good with illness. He wiped my face after I was sick, held my hand while we waited for the doctor to explain the latest test results, and sat by my bedside after my surgery. We took turns telling each other that it would be OK and held on tight when we needed to cry. But I also needed someone outside my immediate family to listen to my fears.

My husband was carrying around his own huge sack of fear. We both needed an outside listener. Even if you decide you don't want to share the details of your diagnosis with most of your friends or extended family, you will need a confidant. I remember apologizing to one of my friends about dumping on him. "But," I told him, "my fear feels like this huge mushroom. When I break off pieces and giving bits of it to my friends and family, I feel like I can cope with the rest." He assured me that he was honored that I shared.

No one should try to get through cancer alone. Let people know what you need. Once you are well, you can pass along the kindness to someone else.

Also Read Phyllis's SharePost:

Finding Support When Your Cancer is "Different": Resources for Inflammatory Breast Cancer