To be as supportive as possible, understand what your loved ones who are cancer patients are really going through.
16 Things Cancer Patients Wish You Knew
My stress isnât just from my illness
âOne of the misconceptions is where the stress is coming from,â says Monica Bryant, Esq., chief operating officer for nonprofit cancer survivorship organization Triage Cancer. âItâs not just the physical disease, itâs all these other things.â Treatment and the physical effects of cancer are just part of the pressure of dealing with a serious illness. Cancer survivors worry about taking time off work and the financial effects of that, plus they need to figure out how to take care of their families. (Don’t believe these cancer myths.)
My worry doesnât end when Iâm cancer-free
Even after survivors are in remission, they are aware that the disease could return. âThe fear that the cancer will come back is hanging over your head,â says Kevin Stein, PhD, vice president of the Behavioral Research Center for the American Cancer Society. âThe task of dealing with that can be very distressing, and itâs a task every single cancer survivor needs to deal with.â
I donât always know how to respond to âHow can I help?â
Those living with cancer appreciate when their loved ones lend a hand, but asking what to do puts the burden on the patient to come up with something. âInstead of asking, âHow can I help?â just do it,â says Alison Mayer Sachs, MSW, CSW, OSW-C, president of the Association of Oncology Social Work and director of cancer support services at Eisenhower Lucy Curci Cancer Center in Rancho Mirage, California. Tell your friend youâll pick up his or her kids from school or buy grocery staples when youâre at the store, suggests Sachs, who was diagnosed with lung cancer in 2009. (Read up on the most groundbreaking cancer research of this year.)
Treatment can have long-term effects
Long after those living with cancer are home from the hospital, theyâll continue dealing with emotional, physical, and psychological effects, Bryant says. âThe long-term side effects of treatment are extensive. Thereâs fatigue and this concept of âchemo brain:â cognitive issues, memory issues, trouble concentrating,â Bryant says. âMore and more studies show itâs not just chemo that triggers this âchemo brain,â but radiation and other treatments.â Treatment attacks healthy cells in addition to cancer, Stein says, and that damage can have effects months or years later, such as cardiovascular disease or even secondary cancers.
Your advice probably isnât helping
âCancer care is so personalized that your well-meaning advice about someone you knew doesnât pertain to the person youâre talking about,â Sachs says. Unless youâve been asked, hold back on offering suggestions. (Watch out for the cancer symptoms that men tend to ignore.)
Cancer is a financial burden
Cancer treatment is expensive, and not all health insurance will cover enough to prevent a huge financial blow. Plus, going through treatment and recovery means taking at least some time off work. Losing money during the process doesnât mean cancer survivors have been irresponsible with their money or didnât go through the right steps, Bryant says. âThe reality is that people who have insurance and savings accounts and did all the things they needed to do as responsible adults can still end up in a bad financial place,â she says.
I canât get around as easily as I used to
âIf someone is too sick to get themselves to treatment, that adds a whole other level of stress and anxiety to what theyâre dealing with,â Bryant says. Doctors appointments are usually during the day when others have work, so it can be hard to coordinate rides. Public transportation isnât a great option for a person whose immune system is already compromised, Bryant says. Some programs like the American Cancer Society Road to Recovery offer rides, but finding transportation is still an added stress. This is what cancer doctors do to prevent cancer.
I didnât ask for this
Blaming cancer on a personâs lifestyle is not being supportive. âNine and a half times out of 10, the first thing people say when they hear I had lung cancer is âDid you smoke?ââ Sachs says. âWhy would you ask that?â It doesnât matter what caused the cancer; what matters is that you show concern and understanding to the survivor.
Cancer is painful
Tumors growing pressing against body parts are just part of the pain. Most of the pain is related to radiation or chemotherapy, which can cause mouth sores or damage stomach lining, Stein says.
But pain isnât my only discomfort
âPain is the most feared and the most distressing, but it is not the most prevalent,â Stein says. Cancer survivors also need to deal with fatigue, which, unlike pain, canât be treated with medication. These foods are proven to help prevent cancer.
I donât necessarily want to repeat my updates to everyone
Telling every treatment update to every single person can be exhausting. Some cancer survivors like to have a point person whom other loved ones can get details from, while others might use an online system that sends emails when they post password-protected updates, Bryant says.
I want a heads up before you visit
Your surprise drop-in might not be appreciated if a cancer survivor isnât feeling up for guests, Sachs says. Call ahead to check if itâs a good time to come, or ask when a good visiting time would be, she says.
I understand that you donât know what to say
âWhat I often hear from cancer patients is, âNo one wants to talk to me about cancerâ or âThey donât know what to sayâ or âI donât hear from friends anymore,ââ Sachs says. âThereâs this fear of saying the wrong thing.â Show your concernâbut not pityâand let your loved one know youâre not sure what to say. Offer your support, and ask if they want to talk about their cancer experience before starting the conversation, she says.
We donât all want to be referred to the same way
Words like âpatientâ or âvictimâ can hold negative connotations that someone living with cancer doesnât relate to, but phrases like âsurvivorâ or âliving with cancerâ are usually more accepted, Bryant says. âWeâre not victims and donât want to be treated like victims,â Sachs says. Some people who have been cancer-free for years might not identify as a survivor, so try to understand how the individual is comfortable being addressed, Stein says. (Read up on these reassuring things scientist wish you knew about cancer.)
Changes in my family roles can be stressful
If a cancer survivor used to be the familyâs main breadwinner, a spouse might have to take on more out-of-home responsibilities to make up for the reduced income. Or if the person with cancer used to keep the home organized and canât fulfill that role anymore, someone else will need to take care of those responsibilities. These family role changes can add extra stress to coping with cancer. âThings they were formerly able to do, they might not be able to do anymore,â Stein says. âWhen someone else has to pick up that slack, thatâs a stressor.â
Iâm not obligated to share details
By law, those with cancer do not need to share their diagnosis in their workplace or personal lives, Bryant says. Disclosing that information could have long-term impacts that the survivor wants to avoid, so donât press for details. To help them feel better, share these hopeful cancer statistics that everyone should know.
