3. Organize Your Support Team

This diagnosis is too difficult to deal with by yourself. Draw upon the help of your doctors, family, friends, nurse advocates and ABC2.

Telling the People in Your Life You Have Cancer

Telling people that you have cancer can be hard because it makes the disease feel more real to you, but having your support group together will eventually make things much easier moving forward.

Be prepared for people to react differently to the news. Many people will be helpful, but some people may withdraw.[1] People will ask questions that you don’t want to delve into or don’t know the answers to. Remember that it is okay to say you don’t want to talk about something or that you just don’t know the answer.[2] Be prepared to change the subject or end the conversation when you have shared everything you wish to share.[3]

Your close family and friends are likely the people you will share the most with, both in terms of details of your disease and your feelings about the diagnosis. When people first hear the word ‘cancer,’ they tend to think the worst. Do your best to educate the people close to you on your particular cancer. It is best to have these conversations in a private, comfortable setting.

Telling children can be very difficult. Although the first instinct is to protect them, it’s important that you help them understand what is going on. You can describe cancer as a “lump of bad cells that is making mommy/daddy sick.” For older children and teens, you can give them more details and tell them about your treatment plan. It is best to give as much information as possible because, if there are any gaps, children tend to assume the worst. Make sure they know that nothing they said or did could’ve caused you to have a brain tumor. Reassure your children that they are loved and taken care of. Try to keep daily routines as normal as possible, as normalcy is comforting.

For extended family and acquaintances, it may be best to delegate someone close to you to spread the news. Right after your diagnosis, you will likely not feel like making all those uncomfortable phone calls.

If you feel comfortable telling people at work about your diagnosis, tell them in a comfortable, private place. However, if you do not feel comfortable, you can choose to only tell people who are depending on you. You do not have to tell anyone the specifics of your disease. Simply telling them you have a medical condition that may limit your working capacity is legally all you need to do.

Many patients struggle with how to tell new people in their lives that they have brain cancer. At a stage in life when a patient is dating or applying to jobs, this can be especially difficult. You don’t need to announce your diagnosis on the first date or at a job interview. First, let new people get to know who YOU are: not just a person with cancer. However, after you’ve established a rapport, it is important that you are open about the diagnosis with people who will play important roles in your life. Be honest with them about your prognosis and how it will affect your daily life. Like everyone, new people in your life may want to be helpful, or they may disengage. Helpful people are the only type you want to be surrounding yourself with anyway.

It is your choice whether to share your cancer diagnosis on social media like Facebook or CaringBridge. If you choose not to, you may consider using settings that allow you to moderate posts on your wall and tagged photos before they are posted to make sure someone else doesn’t spill the news. For some people, social media can make them feel more connected to others, but for some people it can be the opposite.

When Your Child is the Patient

When you are telling your child they have cancer, it is extremely important to address common misconceptions that young people have about the disease, including:

  • “This illness is not the result of something you did or did not do.”
  • A tumor is not contagious. You cannot ‘get it’ or ‘give it’ to anyone.
  • You are still you. Having a tumor in your brain does not change who you are.

Be prepared for difficult questions including ‘Am I going to die?’ Be honest and direct. Together with your doctors you are going to do everything you can to make the illness go away.”[4]

Siblings can have similar worries and misconceptions around cancer, as well as feeling neglected while everyone is worried about their sibling’s treatment. Engage them in the process and encourage them to help. It can be good for them to send cards and visit the hospital or organize a bake sale to raise money for research. They will need to be in the care of others more often, so focus on the quality of your time with them rather than the quantity.[5]

For pediatric patients, school is a very important consideration. Most children will want to stay in school as much as possible to add a degree of normalcy to their lives and see their friends. Letting the school know what’s going on will help them to support you and work with you. After treatment, going back to school can be a tough transition because of decreased ability and missing a lot, both academically and socially. Children may need some special education accommodations.

Running Your Team

Appoint your Agent in Charge, the person in your life who will play an active role in your care and will make choices for you in the case that you can’t. While this person is often a spouse, it does not have to be. Siblings, adult children, or parents can also be agents in charge, depending on who in your life is the most capable of handling this large responsibility. This assignment of responsibility should also be in writing at your health care center (your Advance Health Care Directive).

Have a wingman—most of the time your Agent in Charge—go with you to meetings with doctors. Stress and fear are memory inhibitors and you may not always feel comfortable asking questions. Both you and your wingman should always take notes and ask whatever questions you have.

The number of friends and family that will want to have updates on your journey will likely be overwhelming. Consider web tools such as CaringBridge, Facebook Groups, and Google Groups. These are easily updated, private websites that can be personalized to share information with, and receive messages from, your community.

When friends and family want to help, it can be useful to put together a wish list of tasks that are easy to delegate. Be specific about what you need: a ride, help with shopping, help making phone calls.[6] A great help in this area is a meal scheduling website like Meal Train or Take Them A Meal. Think of it like a wedding gift registry—people want to do something for you, and you want to make sure it’s useful.

Nurse advocates, such as Beacon Nurse Advocates, can help you understand your treatment, coordinate your healthcare, deal with your health insurance, help you find clinical trials, and more. They can be especially helpful for people who have trouble navigating the healthcare systems and who have the means to pay for it.

Ask your doctor or medical center about support groups for your type of brain cancer. If you do not like a particular support group that you try, don’t feel obligated to stay. The whole point of support groups is to make you feel better, so if they make you feel uncomfortable, try to find another group. Face-to face support groups can be a great way to make friends who can be there for each other,[7] but you should also consider online support groups. These can be especially helpful for people with rare types of brain cancers and people who live in rural areas. You can also look for general cancer support groups that are open to all types of cancers.

Even if you have a lot of people in your life you can talk to, personal counseling can be good to talk to someone who is separate from your friends and family. Most major health insurers will cover a few free counseling visits each year, and many will subsidize more.

Links

The Healing Exchange Brain Trust an online support forum

Imerman Angels, mentorship and free personalized one-on-one cancer support for cancer fighters, survivors, and their caregivers.

Cancer Care provides telephone, online and face-to-face counseling, support groups, education, publications and financial and co-payment assistance

Cancer Support Helpline, 1-888-793-9355

Cancer Experience Registry is an outlet for cancer patients and caregivers to tell their personal stories

Cancer Support Community provides support, education and hope to people affected by cancer.

For Young People

Stupid Cancer, general resources

The Ulman Fund provides support, education, and meetups for young people with cancer

Mass Kickers has several campaigns which young people can be involved in, an awareness campaign, an action campaign, and a support campaign

Prepare to Live uses the power of documentary style filmmaking and the worldwide web to create a global community of cancer patients, survivors and caregivers

Cancer Care for Young Adults information and support groups for young people with cancer

Financial Aid for Cancer Survivors

Continue Reading

10 Steps: Living with Brain Cancer

Sources

[1] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[2] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[3] Deanna Glass-Macenka and Alessandro Olivi, “Patient’s Guide to Brain Cancer,” Johns Hopkins Medicine, 2012.

[4] “About Brain Tumors,” American Brain Tumor Association, 2012.

[5] “About Brain Tumors,” American Brain Tumor Association, 2012.

[6] “Frankly Speaking About Brain Tumors,” Cancer Support Community, National Brain Tumor Society, ABC2 and the Musella Foundation, 2013.

[7] “About Brain Tumors,” American Brain Tumor Association, 2012.