Managing Your Cancer Care With Community In Mind
We understand that cancer treatment is an extremely stressful and exhausting time. To make life a little easier we’ve collected suggestions from LGBTQ+ folks who have had or are living with colorectal cancer.
Things to Consider - Medical Care
You are deserving of safe, quality, welcoming cancer care. A crucial part of going through cancer treatment is making sure you are with a medical team you trust. In order to do that LGBTQ+ folks who have had experience with colorectal cancer have the following recommendations.
Ask your doctor ahead of treatment whether care providers will be supportive of and comfortable with your identity and partner/friends who might accompany you to appointments. If you sense or experience an issue with a given provider, ask to see someone else.
If you need advice on finding an LGBTQ+ friendly cancer treatment facilities check out this page.
Ask questions, no matter how big or small, ridiculous or serious…
just ask.
For most of us, cancer treatment and care is not a part of our daily routines. Cancer Centers are full of new words, new people, procedures, etc. It can all feel overwhelming, that’s why it’s important to ask questions. It’s also a good idea to write all of your questions down in the same place. That way you have one place you always have one centralized place to refer back to.
At the end of the day this is your life and you should understand what’s happening with your body! That way you can make the decisions that fit your needs best. Click here for a list of words that you might hear while in treatment.
Always get at least two or more opinions.
Doctors are human and the rest of us, they can make mistakes. When possible it’s important to ask for another opinion.
Things to Consider - Your Support Team
Even though finding a safe and affirming medical provider is super important for our health, that doesn’t mean it’s always easy to do. We’ve assembled some tips for finding a provider that fits your needs.
Have someone you trust accompany you to appointments. This is especially important because it can be difficult to remember all of the information you hear during an appointment. Try to have at least two people hear the same information so you can compare notes, and either record the appointments, write down pertinent information, or get a good discharge summary from your medical provider.
Have one person provide updates to the rest of your loved ones. Having one stream of communication and redirecting those that feel like they have a right to know additional information back to that one stream of information can help with capacity and boundaries. You can achieve this one stream of communication through a Facebook Group, Group Text, or through websites like CaringBridge.
Treatment can be especially intense for your primary caregiver. If you are mainly relying on one person, make sure that they are also receiving the support they need. Whether that’s through support groups, or asking other members of your support team to help out with simple things -a ride to the hospital, a run into the grocery store, a cooked meal, all these little things can make a huge difference!
Support groups:
LGBTQ+ Support Group – Women Caregivers
Family Caregiver Alliance Support Groups
“Make sure that the people you enlist for assistance also have somebody they can talk to so that they don’t burn out while helping you.”
For many LGBTQ+ cancer patients our support team might look different than what cancer centers are used to. We are far more likely to be supported by ex-partners, friends, and chosen family. Because of our unique care team it’s important that you make it explicitly clear who you want making decisions for you if you are unable to make decisions for yourself.
Get a Health Power of Attorney signed and notarized. This is the legal document that allows one person to make health decisions for you. Although an HCPA is easy to put in place, states have different rules and forms; so you’ll need to consult those of the state in which you live. To learn more, click here.
Things to Consider - Your Mental Health
Stay positive…even when you think you can’t.
Managing stress is key to your in treatment experience. Research suggests that while meditation is a great way to improve your response to stress it may also strengthen your immune’s system!
The best way to take advantage of the benefits to meditation is to make it a part of your regular day. You can choose from a wide array of meditation through apps like Headspace, Calm, etc or on YouTube.
Keep a journal.
Research shows that journaling can also have a huge impact on your cancer journey and experience. In one study, cancer patients who journaled had improved memory, better management of emotions, and improved relationships.
Be sure to get enough (but not too much) bed rest.
The bad news is Insomnia is increased for individuals going through cancer treatment. The good news is CBT-I or “cognitive behavioral therapy – insomnia” is an evidenced based way to help anyone who struggles with insomnia. There is even a free app called CBT-I Coach that is full of a wide variety of resources to help improve your sleep habits.
We’re with you every step of the way
If you find yourself in need of additional support, join the National LGBT Cancer Network’s LGBTQ+ Peer-Led Support Groups. No matter where you are on your cancer journey, we’re here for you.
