Resource Fair: Mental wellness

Coping with your own or a loved one’s cancer diagnosis can be extremely difficult. COLONTOWN has created this list of resources for our Mental Health and Wellness Resource Fair that can be useful for one’s mental, psychosocial, or physical wellbeing.

There are many ways one can cope with a cancer diagnosis and no one program will work for everyone. We thought it was important to share resources for not only how to access therapy, but also find a sense of community, a mentor, local support, as well as the physical aspects of wellness to try and overcome some of the physical hardships of treatment and finding your zen.

Here is the recording as well as a great packet of resource material and handouts.

The fair participants were:

  • Mental Health America (2:15)
  • Imerman Angels (12:55)
  • Cancer Wellness Center (29:40)
  • Chelsey Gomez — Oh You’re So Tough (38:40)

Additional organizations in the materials:

  • Cancer Support Community / Gilda’s Club
  • Zen Caregiving
  • Cancer Care
  • Look Good… Feel Better
  • A Time To Heal Foundation
  • Health Well Foundation

Download the material packet and handouts here:

What if I can’t work?

Some cancer patients, particularly those with a stage IV diagnosis, can no longer — or don’t want to — continue working. 

Although employers are required to provide “reasonable accommodations” under the ADA, they have the right to refuse certain accommodations if they are deemed to be an “undue burden” on the employer. If this is the case for you, you may be unable to continue working. You may also lose your job if you are on a temporary contract that ends and is not renewed.

Some patients also make a conscious decision to stop working due to side effects, or simply because they prefer to spend time with loved ones.

If this situation applies to you, finances are likely at the top of your mind. In this section, we will go over some of the resources that may be available to you.

Please note that this section is focused on US programs, and that the terms we use below reflect the language used by these programs. 

What financial support is available?

If you are no longer working, and think that you may qualify for federal or state benefits, the US government has a screening tool you can use to check which benefits you qualify for. You can access that screening tool here.

Here are some of the programs that are available:

Social Security Disability Insurance (SSDI)

SSDI is available to disabled people who have worked for long enough, recently enough, and paid social security taxes on their earnings. In order to be classified as disabled, you need to have a documented medical condition that prevents you from working. This condition must be expected to last a year or more, or result in death. If you would like to learn more, see the SSDI website here

Supplemental Security Income (SSI)

In order to qualify for SSI, the same disability criteria above apply. You must be unable to work due to a medical condition expected to last more than a year or result in death. Unlike SSDI, SSI does not require a specific length of time working, or paying taxes. This benefit is intended for low-income families with limited resources, so to qualify, your income must be under a certain threshold. If you want to learn more, the SSI website can be found here.

Unemployment benefits

If you have lost your job due to reasons beyond your control, you may qualify for unemployment benefits. These payments can provide temporary financial assistance if you qualify. The eligibility criteria varies by state, so it’s important to look for local resources. For more information, you can refer to the US Department of Labor website here.

Food stamps (SNAP)

This benefit provides food assistance to low-income families. You will need to apply through the specific agency in your state that oversees the program. the USDA website has more information about the program, eligibility requirements, and how to apply.

Temporary Assistance for Needy Families (TANF)

This program provides cash assistance to low-income families that can be used for a variety of purposes. The eligibility criteria vary from state to state, so make sure to research local information. Apply through the agency in your state that oversees the program. See the TANF website for more details and how to apply.

Nonprofit organizations

The Colorectal Cancer Alliance maintains a comprehensive list of organizations that provide financial and other types of support. Download their guide here.

How do I get health insurance?

If you are concerned about issues related to insurance and medical expenses, one of the first things to do is have an open and honest conversation with your medical team and the social worker at your cancer center. Many cancer centers have financial assistance programs to help people pay for medical expenses. Your social worker should be able to help you navigate your situation and direct you toward local resources. Your team may be able to recommend lower-cost treatment options and prescriptions to help with high deductibles and co-pays.

It’s important to note that having cancer does not affect your ability to get health insurance.

There are also some organizations and programs you can look into:

Consolidated Omnibus Budget Reconciliation Act (COBRA)

If you lose your job, you may be able to keep your old insurance plan for a limited period of time. COBRA applies to local and state employers of any size, and private companies with more than 20 employees. Some states also have laws that cover smaller private employers as well. Take a look at this handy chart from Triage Center.

If you qualify for COBRA, you can keep your insurance plan for usually 18 to 36 months. Although COBRA can be expensive, it may be a good option if you are already close to your deductible and/or out-of-pocket maximum.

Your spouse or parents’ healthcare plan

If you have a spouse who is working and has insurance through their employer, this may be an option for you. Also, if you are under the age of 26 and your parents have insurance through their employers, you should be able to get coverage under one of their insurance plans. They can apply for coverage for you regardless if you are married, single, living with them, or living independently. Keep in mind that coverage stops when you turn 26, so look for other options as well.

Disability insurance

Some people have private disability insurance plans that they have purchased through their employer. You should be able to cover your health insurance costs either permanently, or for a set period of time. Unfortunately, it is unlikely you will be able to purchase a plan after being diagnosed.

Affordable Care Act (ACA)

ACA provides insurance for people who do not have insurance from an employer and who do not qualify for Medicaid or Medicare. Most people enroll during the open enrollment period, but you are also eligible to enroll if you have experienced a major life change — such as losing or changing jobs, or moving to a new state. You can explore your options on the ACA website.

Medicare

If you are 65 or older, you should be able to qualify for Medicare. If you have a documented disability, you may be able to qualify sooner. Check out the Medicare website for more information. They have an eligibility screening tool that you can access here. To better understand the factors you need to consider when enrolling in Medicare with a cancer diagnosis, see this article

Medicaid

Medicaid provides insurance coverage to low-income families. Eligibility varies state by state, and is based on a variety of factors such as household income, disability status and qualifying medical conditions. Low-income families, qualified pregnant women, children, and people receiving Supplemental Security Income (SSI) are eligible automatically. Some states have expanded programs to extend coverage to additional high-need groups. 

You can learn more about Medicaid on their website. You can also use this screening tool to see if you qualify. If you are ready to apply, create an account here, and you will be directed to the application process in the state you live in.

Options for veterans

If you are a veteran, there are some options available for you. Depending on when and where you served in the military, Veterans Affairs (VA) can provide healthcare coverage for veterans with or without a service-connected disability for cancer. As of August 2022, the PACT Act for Burn Pit/Toxic Exposures bill was signed into law, which added 20 new cancer types to the list of covered conditions — including all GI cancers. This allows veterans with these cancers to apply for potential benefits.

If you’re interested in learning more, take a look at the VA website.

Livestrong prescription card

Livestrong assists cancer patients with obtaining prescription medication at discounted prices. Learn more here.

Nonprofit organizations

The Colorectal Cancer Alliance maintains a comprehensive list of organizations that provide financial and other types of support. Download their guide here.

Want to learn more about working while in treatment?

Join one of our COLONTOWN Facebook groups:

  • The Billing Office is where we discuss things related to insurance, disability and social security
  • If you are an active servicemember or veteran, check out Military Service Station

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand explanations of biomarker tests. We’re here for you! See our list of Learning Centers here.

Last updated: April 12, 2023

Working with cancer

Working can be a big source of anxiety for many patients. You may wonder what effect your diagnosis will have on your career, your ability to work, and your finances. But the good news is, the vast majority of patients continue to work through treatment.

Please note that this section focuses on working in the United States.

What do I need to consider?

It’s a good idea to be prepared for the future. Here are some things to think about.

What does your treatment plan look like?

If you’re an early-stage patient, you will likely have surgery and will need to take some time off afterwards to recover. This will likely be at least 6-8 weeks for many patients, but could be longer if you have a physically active job.

If you are a stage III or IV patient, you may be having some combination of chemotherapy, radiation, and/or surgery. Your chemo infusions will probably be every two to three weeks, depending on the protocol, and you will need to spend most of the day at your infusion center. While some people don’t feel too poorly afterwards, others feel nauseated, fatigued, and generally unable to work for several days during each chemo cycle. You will also need to factor in time off for other medical appointments, scans, and lab tests.

It’s important to talk with your oncologist to understand exactly what treatments have been planned, so you are able to communicate clearly with your employer.

What side effects will you experience?

Talk to your oncologist about common side effects, how long they’re likely to last, and how severe they may be. You can also ask whether patients on similar treatment plans have been able to continue working, and whether your oncologist has specific recommendations based on your personal circumstances. 

If you’re just starting chemotherapy, it might be a good idea to take off a bit more time than you think you need at first, until you can figure out how your body responds to treatment. Some people feel okay on infusion day, and a couple of days after that (hello, steroids!) but then crash. Other patients feel terrible on infusion day, then slowly recover as time goes on. These patterns can be different for everyone, so it’s important to listen to your body and be realistic about what you’re capable of doing while in treatment.

Do you want to continue working?

This may seem like a silly question, but it’s an important one. Some patients love their jobs, and find that continuing to work brings them a sense of satisfaction, normality, and routine that they crave. Other patients find their jobs stressful and draining, and would rather spend their time with family and friends and focusing on self-care. Of course, we all have logistical and financial considerations to think about, so quitting your job may not be an option at the moment. But it’s a good idea to consider what you really want, and how continuing to work is going to affect your quality of life.

How many hours a week do you work?

If chemo and/or radiation is part of your treatment plan, you’ll need time off to attend medical appointments and to recover from side effects. If your job allows for flexible working hours and the opportunity to work from home, it will be much easier for you to continue working than for someone with a rigid schedule who has to be physically present at work every day.

However, in the US, you have the right to ask your employer to make “reasonable accommodations” (more on this later) to allow you to continue working if you want to. You may be able to ask for reduced hours or a change in your work schedule. It’s important to realize this may be much more feasible for an office worker than a restaurant server or delivery driver.

How stressful is your job?

Cancer can be an emotional rollercoaster, and treatments can be very hard on the body. You’ll need extra time to rest, recover and focus on self-care. If you have a highly stressful or demanding job, where you are under pressure to meet strict deadlines and work long hours, you may find it difficult to balance everything. If you have a job that requires a lot of your energy, physical or mental, you will probably need to consider taking more time off than someone with a less demanding job.

You may be able to talk to your employer about modifying your schedule and/or daily tasks to reduce your stress.

What do your finances look like?

This is probably the most important factor that will influence your decision whether or not to continue working. Unfortunately, most people are not able to continue paying their bills if they quit their jobs, particularly if they are single or don’t have much family support. In the US, health insurance is also tied to employment. If this is your case, it’s a good idea to be honest with your employer about that fact, ask for necessary accommodations, and try to come to an agreement that works for everyone and allows you to continue working.

If you do lose your job, or are unable to continue working for any reason, know that there are public benefits you may be able to access, as well as non-profit organizations who can provide some financial assistance. 

Read more about financial assistance here.

Do you have health insurance?

Cancer treatments are expensive, and sometimes patients need to travel out-of-network for second opinions and treatments that may not be available locally. Having a good insurance policy can make a huge difference to your general well-being and treatment options (nobody likes fighting with insurance companies!) If you feel like you need to continue working because you rely on insurance from your employer, it may be a good idea to see if you can reduce your hours while maintaining your insurance.

If you lose your job, or are unable to continue working for any reason, there are several options that may be available to you.

Read more about health insurance assistance here.

Diagnosed: August 2020

Disease: Stage III rectal cancer, progressed to stage IV with lung metastases

I’m 78 years old. I had year-long bleeding, which was originally diagnosed as hemorrhoids. I went straight to chemo radiation in Oct 2020 and then three months of recovery. I got a permanent colostomy in Feb 2021 and a clean colonoscopy then too.

I am the executive director of a homeless agency in Los Angeles. Due to Covid, all of us were working remotely, so I continued to work through the first six months of diagnosis and treatment. I found working to be a great distraction. It was all on the computer. I didn’t have to travel, I kept my pay and my engagement with my employees and it just helped all around.

Fast forward post-APR surgery, I took a six-month medical leave. During this time I received Capox for seven infusions and then only Xeloda and Avastin since July of 2021. During that time, my scans showed stability, and just recently, small growth in lung nodules. So I became stage four.

Beginning in September 20 21 I went back to my original job as we’re still remote. I have been working 5 to 6 hours a day since September 2021.

It would have been difficult to work while receiving oxaliplatin due to fatigue and neuropathy, which I still have but I can manage while on maintenance. I hope this gives some encouragement to others.

Know your rights

If you live in the US, your rights at work are outlined by several different laws we have listed below. If you live outside the US, these laws will be different. It’s a good idea to check with a cancer support worker or social worker to help you understand your rights and the relevant laws in your country. Here are some US laws you need to be aware of:

Americans with Disabilities Act (ADA)

This law was passed to help protect people with past, current, or perceived disabilities from discrimination at work. If you work for a private employer with more than 15 employees, or any type of public employer (local, state, or federal), you have a right to ask for “reasonable accommodations” if you have a medical condition that affects your ability to carry out your job. Some examples of reasonable accommodations include:

  • Modifying your work schedule to accommodate chemo infusions and medical appointments
  • Allowing you to take additional breaks if you are experiencing fatigue and nausea due to treatment
  • Allowing you to move your workspace to a quiet room if you are having difficulty concentrating due to chemo-related brain fog
  • Providing a stool or chair for you to sit on if you have to stand for long periods of time and struggle with pain in your feet due to neuropathy
  • Moving you from an active, front-of-house job to a desk job or administrative position if you are experiencing fatigue and having a hard time being on your feet all day
  • Extending deadlines to give you more time to finish your work if you are struggling with stress and other side effects from treatment

There are many accommodations that employers can make to allow you to continue working, however, employers are allowed to refuse accommodations if they will be an “undue burden” on the company. For more information, look at the ADA website.

Before asking for reasonable accommodations, think about how you will approach talking to your employer. Read more about this here.

Family Medical Leave Act (FMLA)

The Family Medical Leave Act provides up to 12 weeks of unpaid leave for people who need to take time off due to medical or family reasons. If you work for a public agency, a public or private school, or a company with more than 50 employees, cancer patients and carepartners can request up to 12 weeks off work. You can request the entire 12 weeks at once, or break it up into smaller increments. For example, you can even use FMLA leave to request a few hours off work to attend a scan appointment. Unfortunately, time off under FMLA is unpaid, but it is often possible to combine it with sick leave, extra paid vacation time you may have saved, or payments from a short-term disability plan, if you have one. 

To learn more about FMLA, head over to the US Department of Labor website.

Genetic Information Non-Discrimination Act (GINA)

This law ensures that your genetic information, including cancer-related genetic testing, remains private. It guarantees privacy for your results, as well as any discussions that you have had with a genetic counselor. Employers and insurance companies are not allowed to request or use this information to make decisions about employment or insurance coverage. 

If you want to learn more, read about the law on the National Institute of Health website.

How do I talk to my employer and colleagues?

First of all, you are not legally required to disclose any aspect of a past or current diagnosis to your employer or anyone you work with. However, if you are planning on working through treatment, it may be difficult to keep your condition private. Furthermore, your employer is not required to provide you with any flexibility or accommodations if they’re unaware of the medical issues you have.

Before speaking with your employer, take some time to plan out what you are going to say. Consider the following questions:

How much do you want to disclose?

Do you want your employer to know exactly what stage you’ve been diagnosed with, or just the fact you have cancer? Do you want to disclose your full treatment plan, or just the fact you’ll need time off for appointments and recovery? Do you want to leave the C word out completely, and focus on the time off you’ll need for a medical issue?

This depends on the relationship you have with your boss and employer. Some patients prefer to be totally open. Other patients prefer to keep things private. If you prefer privacy, you may be able to get time off and/or workplace accommodations without disclosing all the details of your diagnosis. Focus on the specific dates and times you need off for medical appointments.

You can also focus on your side effects, rather than your diagnosis. For example, if you need extra breaks, a letter from your doctor could state that you’re experiencing nausea and fatigue due to a medical condition without mentioning any specifics.

What supporting information or documents might be useful?

When asking for accommodations or time off, it’s always a good idea to have medical documentation ready to support your request.

What information you choose to disclose to your employer will influence what documents you provide. Medical notes from an appointment with your oncologist confirming your diagnosis and treatment plan might be sufficient. Or you can ask your oncologist to write a letter including some basic information about how your medical condition will affect your job.

What do you want to get out of the conversation?

It’s important to be clear with your employer about what exactly you’re asking for. You can make a list in advance. Here are some things you may want to consider:

  • How much time do you anticipate needing to take off and when? If you have not started treatment yet, it’s better to err on the side of caution and take off more time than you need
  • What symptoms are you dealing with, and what accommodations would help?
  • Is there anything else you need your employer to know about your ability to continue working?

When is the best time to discuss this topic?

If mornings are always busy in your store, and afternoons are a bit quieter, you might choose the afternoon to discuss the topic. That way, you are less likely to be interrupted. If your boss is stressed after meetings, you might want to wait until they are in a better mood. While there will never be a perfect time, thinking about a time that would be convenient for everyone involved may lead to a more thoughtful and productive conversation.

What do I say to my coworkers?

If you have to take time off work for treatment, the topic of your health will probably come up with coworkers. If you don’t want to share, that’s okay. But thinking about how and when you would like to approach the subject, and how much information you want to disclose, is a good idea. 

You may also want to prepare responses to the questions “how are you doing?” and “how can I help?” It might be a good idea to prepare a list of things that would be helpful for you: home-cooked meals, a voucher for a housekeeping service, audiobooks to listen to during treatment, or more!

Unfortunately, it’s hard to know how people will respond to serious health issues. Many patients find their coworkers to be wonderfully caring, empathetic and supportive. However, you may find that some people become awkward and distant towards you. This is often because they don’t know how to respond, and don’t want to say the wrong thing. They may have personal experiences with cancer, or may be feeling anxious or insecure about their own health. While knowing this doesn’t make things any easier, you may want to prepare for the possibility of relationships changing. 

What if I face discrimination at work?

If you are treated differently than other employees due to the fact that you have cancer, or had cancer in the past, that is discrimination.

Some examples of discrimination include:

  • Being repeatedly overlooked for promotions
  • Being left out of important decision-making opportunities
  • Being paid less than other employees with the same position, seniority, and level of responsibility
  • Being demoted without a clear reason
  • Inflexibility when requesting time off to attend treatments and medical appointments

In the US, the Equal Employment Opportunities Commission (EEOC) is in charge of dealing with complaints related to workplace discrimination. You can learn more about the work they do and how to file a complaint on their website

In most cases, you have 180 days from the date of the incident to report to the EEOC. In some cases, such as reduction in pay, you may have longer than that. You can file a complaint by yourself, or you can consult with a legal advisor or attorney to help you.

Where to learn more

These resources can help you better understand your rights at work:

Triage Cancer 

This organization provides education and resources related to logistical issues such as finances and employment. They offer free educational webinars, lists of resources organized by topic, downloadable guides, and a great series of short animated videos that discuss a variety of topics related to work, insurance and finances after a cancer diagnosis.

Cancer Care

This organization provides support to people touched by cancer. On their website, you can search for information and resources by topic, access online support groups and register to participate in free educational workshops and community education and wellness programs.

Cancer + Careers

This organization provides career support for people who have been affected by cancer. They provide educational resources for people who are working during and after treatment, as well as resources for people living with cancer and cancer survivors who are looking for a new job or career. They also have downloadable guides and free webinars to help you learn more.

Job Accommodation Network (JAN)

JAN provides education and support to employers and individuals regarding disability accommodations. On their website, you can access a free consultation service as well as lots of educational resources and sample letters to help you communicate with your employer around reasonable accommodations.

Cancer Legal Resource Center

The Cancer Legal Resource Center offers free legal advice to cancer patients and carepartners. They also provide a free downloadable guide that details your legal rights related to work, finances, insurance and medical issues.

Cancer.net

This website has several articles that give more information about working with cancer and your rights at work. They also have lists of resources regarding logistical issues such as finances, work and insurance.

Want to learn more about working while in treatment?

Join one of our COLONTOWN Facebook groups:

  • The Billing Office is where we discuss things related to insurance, disability and social security

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand explanations of biomarker tests. We’re here for you! See our list of Learning Centers here.

Last updated: April 12, 2023

How do I handle all these new emotions?

Cancer is stressful. You may be feeling anxiety, grief, sadness, anger, loneliness and more all at once. Know that these feelings are all normal and okay.

It’s important to check in with yourself about your emotions. Don’t keep everything bottled up inside. Talk with your loved ones about how you’re feeling. This way you can be aware of the difference between simply feeling sad and developing a mental health disorder like depression or anxiety.

If you have any questions about this, reach out to your doctor for a referral to a mental health professional. If you have been diagnosed with a mental health problem before your cancer diagnosis, it’s important to continue with your treatment plan as usual.

Understanding your emotions

Although it may seem obvious, the first step towards learning how to cope with new emotions is to understand how you’re feeling and why. Naming your feelings can be a helpful first step.

Shock and denial

For many newly diagnosed patients and carepartners, a cancer diagnosis may have been the last thing you were expecting to receive. You may not understand all the information you’re given about your diagnosis, and you may find it hard to believe that it is actually happening to you. First of all, know that these feelings are normal. It’s okay to cry, scream, throw pillows, or whatever you need to do to let your emotions out. Reach out to your family and friends, if you’d like. If you’re not ready to talk yet, that’s also okay.

As the days pass and you get used to your new routine, your feelings of shock will lessen. 

Fear and anxiety

It’s okay to be scared. You might be worried about whether not treatments will work, what side effects you might experience. how your diagnosis will affect your finances, your career, and your quality of life. You might be concerned about how these changes will affect your relationships with your family and friends.

Patients from the COLONTOWN Community say feelings are likely to ebb and flow throughout your treatment journey, depending on what is happening at a particular point in time. A successful surgery or good scan results may leave you feeling overjoyed and relieved. Progression, failed treatments, or reoccurrences will likely cause new fears and anxieties to surface. This might make you feel like you’re going through emotional whiplash. Preparing for these feelings will help you ride out the waves as they come.

Reach out to your support system, and be clear about how they can help you. Do you want someone to listen to you vent without trying to fix things? Do you want someone to take tasks off your plate, like cooking dinner? Do you want someone to take on the job of researching treatment options for you? Your loved ones want to help you, and it’s okay to lean on them. 

Feeling overwhelmed

A cancer diagnosis as a lot to take in all at once. You’ll be exposed to a whole new vocabulary about biomarkers, scans, side effects, and treatment options. Understand that it will take time to wrap your head around all this new information, and it’s normal to be confused at first.

That’s one of the reasons we created CRC101 — to help explain everything you need to know in plain language. Remember you can refer back to it whenever you need it, you don’t need to understand everything all at once. The COLONTOWN Community can be a great resource to ask questions and get support. Join here.

You might feel overwhelmed at different points during your journey for different reasons. Once the initial shock wears off, and you begin to understand your disease, you may feel overwhelmed trying to balance medical appointments, treatment schedules, side effects, work and family life. In fact, just keeping track of your prescriptions can practically be a full-time job! 

Our community member suggest that if you find yourself feeling overwhelmed, try to stop and take a deep breath. Think about what really needs to be done now, and what can be done another day. I know we’ve said this before, but don’t be afraid to ask your loved ones for help when you need it.

Uncertainty

Living with uncertainty is a big part of a cancer patient’s life, particularly for stage IV patients. If you’re a planner, this may be difficult to handle at first. Treatment plans can change quickly based on scan results, extreme side effects, or low blood counts. Also, there’s no guarantees that a treatment will work the way you want it to.

While uncertainty can be difficult to manage, there are some things you can do to help. Try to build certainty into your life in other ways. Make fun plans, like meeting a friend for a coffee, or going out to dinner with your spouse. Finding a daily routine can help you feel at ease with other changes in your life. 

Sadness and grief

Many people experience grief following a cancer diagnosis. You may feel like you lost the life you had before you were diagnosed. It’s not easy to see pictures of friends having fun on social media while you are in the chemo chair.

It might not feel nice to experience these emotions, but it’s important to give yourself the time and space to process them. Our COLONTOWN Community members report that people often tell cancer patients to “stay positive!” — but cancer is a hard thing to stay positive about, and suppressing your emotions will not help you in the long run. It’s okay to reminisce and grieve the loss of your pre-cancer life. These feelings may never go away completely, but you should also embrace and celebrate your new life, as different as it may seem. 

Your life is not over. In the COLONTOWN Community, we have stage IV patients living out their lives and thriving in between treatments. If you need some encouragement and hope, come join us.

Anger

It makes sense to feel angry about a cancer diagnosis. Many patients wonder, “why me?” and unfortunately, none of us have an answer to that question. We don’t usually think of anger as a positive emotion, so feeling angry may come along with feeling guilt and shame. But there’s no reason to feel guilty about being angry. 

Some COLONTOWN members suggest axe throwing, paintball, or find a “smash room” in your area — a place where you can take a hammer to old and broken furniture and devices. Anything that allows you to blow off your energy can be helpful. Chat with your doctor if you think these activities might be too much for you. 

It’s important to process your anger in a healthy way, so you don’t end up directing your frustration toward your loved ones.

Guilt and blame

Sometimes anger can give way to feelings of guilt and blame. You may feel guilty about upsetting your loved ones, or feel like you’re a burden to them. If you can no longer take care of your family in the way you did before, you might feel like you’re letting them down. You might even blame yourself or your lifestyle choices for the fact you got cancer in the first place.

While these feelings are understandable, we’re here to remind you that no one is to blame for you getting cancer. The great majority of cancers are tied to spontaneous mutations. In addition, feeling guilty about these things won’t change your circumstances, it will just make you feel bad. When you feel guilty, acknowledge the feeling, but work on letting these feelings go. 

Loneliness

When you get diagnosed, your life completely changes. But it might feel like life goes on for your friends and family. Loneliness is a common emotion in younger patients, who may not know anyone else their age dealing with a similar diagnosis.

You are not alone. Talk to your oncologist about support groups at your cancer center. There are many organizations (like COLONTOWN!) out there to help you get the support you need.

Many patients have made wonderful friends through this experience too, as tough as it is.

Self-esteem and body image issues

Cancer treatments come with changes to your body, appearance, and emotional well-being. Chemo can cause hair thinning, targeted therapies can cause skin rashes, radiation can lead to changes in sexual health and fertility, and surgery may leave scars.

You may feel uncomfortable in your new body, and worry about how you are perceived by others. You might be concerned about how cancer will change your sex life and relationship with your partner. These concerns are normal, and it can help to talk them through with your partner, loved ones, or a mental health professional. Those who love you will be there no matter what you look like.

Here are some tips from our community. First of all, it’s important to be grateful for your body. You may feel resentment towards it for failing you in some ways, but it also has nourished you and housed you for your whole life up until this point. Your body exists to sustain you, not simply to look good.

That said, it is not superficial to feel upset over the changes your body is going through. Your identity is in part tied to your physical appearance, and it makes sense that you want your appearance to reflect how you imagine yourself.

Some patients want to wear wigs, others don’t. Both are okay decisions. If you are a woman and want to experience some pampering, the organization Hello Gorgeous provides support and resources to women with cancer. They offer free or inexpensive virtual makeovers, as well as accessible makeovers at affiliate salons. 

It’s important to note:

While all of these feelings can be normal for many people dealing with cancer, make sure to recognize when you may be experiencing a mental health condition, such as depression or anxiety. If so, you may require outside help.

If you are experiencing the following symptoms for more than a week or two, contact your doctor to discuss how you’re feeling. They may offer you a referral to mental health services:

  • Feelings of sadness that don’t go away
  • Feelings of numbness, nervousness, fatigue or guilt that don’t go away
  • Feeling hopeless, like life has no meaning
  • Inability to stop worrying or difficulty concentrating
  • Inability to enjoy things that you normally enjoy
  • Feelings of hurting or killing yourself
  • Crying for long periods of time every day or many times throughout the day

What do I do with these emotions?

Knowing that these feelings are all a normal part of the cancer journey does not necessarily make them easier to manage. So here are some helpful tips from the COLONTOWN Community.

Seek help from a mental health professional

If you suspect that you’re experiencing signs of depression or anxiety — or simply feel you need some professional help processing your emotions, it’s a good idea to seek out a psychologist or therapist. Working with a mental health professional can help you learn to manage and express all these emotions. You should be able to ask for a referral from your family doctor or the social worker at your cancer center. Some of these services are offered free to cancer patients, but it’s always a good idea to check what your insurance will cover to avoid surprises later on. 

Lean on your support network

Don’t be afraid to let people know what is going on, and to ask them for help. The people who care about you want to see you doing as well as possible, they don’t want you to suffer in silence or look strong for them. Think about what you need. Do you need a listening ear? Someone to look after the kids while you’re getting chemo? Someone to pick up groceries or clean the house? Maybe a food delivery gift card? Make a list and delegate, or ask your partner or another loved one to do the delegating for you. Taking some of the day-to-day tasks off your plate can help relieve pressure and reduce stress levels. It might even give you some more time to process how you’re feeling.

If you can’t talk to loved ones about how you’re feeling, connect with other people going through similar experiences by joining COLONTOWN Community.

Find a way to express your feelings

Suppressing your feelings doesn’t make them go away. The longer they stay inside, the more they grow until it can feel insurmountable to share with someone else. If you’re having trouble expressing your feelings, try taking it slow. Some COLONTOWN members suggest starting off with lighter emotions, if that feels right for you. Point out when you feel happy, or when you found something funny. When you’re comfortable sharing these emotions, move on to ones you find more difficult to talk about.

Communication about goals is an important part of sharing your feelings, and it might explain why you aren’t feeling heard from those in your life. Some people hear you’re feeling sad, and immediately jump to fix the problem. That sometimes leaves you feeling pressured to immediately feel better. Tell your loved ones what you want from them, if it’s just a listening ear while you vent — or if you do want suggestions or help managing your problems, let them know about that too.

Know that your loved ones are there for you, but they likely don’t have much experience helping people process the emotions that come with a cancer diagnosis. Luckily, there are professionals there to help you. You can chat with the social worker at your cancer center to start with, and if you’d like, they can refer you to a mental health professional like a psychiatrist or therapist.

Be honest about your feelings

After a cancer diagnosis, many patients are bombarded with people encouraging you to “look on the bright side” or “keep a positive attitude.” While this may be helpful for some people, it can be absolutely infuriating for others. In fact, there’s even a word for it — “toxic positivity.”

Your feelings are normal and okay — the good, the bad, and the ugly. The truth is, cancer is an emotional rollercoaster for many patients, and you will feel many different things throughout your cancer journey. Don’t put pressure on yourself to feel a particular way — or act a particular way — if you really aren’t feeling it.

Don’t blame yourself

When you’re diagnosed with cancer, it’s natural to want answers. While it may be convenient to blame yourself for eating too much bacon or drinking too many sodas, we don’t know much about why cancer develops. Many people exercise, eat healthy, and do everything “right” and still get cancer. Others drink, smoke, and eat poorly yet live a long, disease-free life.

So remember that blaming yourself does nothing to change your current circumstances. It just makes you feel bad. Do your best to let go of the guilt, and focus on what you need to do to take care of yourself (both emotionally and physically).

Practice relaxation techniques

Exercise, mindfulness, meditation and guided imagery can be powerful tools to help calm your mind and ease anxiety. If you are religious, prayer is another technique you may find helpful. Try free meditation apps or calming Spotify playlists to get started.

Some employers and insurance companies offer subscriptions to meditation apps for free. If you’re interested, chat with your employer or insurance company.

Save time for things you enjoy

Take a moment to sit down and make a list of things that make you happy. It could be as simple as walking through the neighborhood park, listening to your favorite album, taking a long bath or eating your favorite dinner. Try to carve out space in your day for at least one of these activities. Focusing on the little things you enjoy throughout the day — and being really present when you do them — can help you feel more connected to your life before you were diagnosed. If you are experiencing appetite loss, pain, or reduced mobility, there are ways to adapt your favorite activities. You might not be able to go for a walk with the dog, but you can sit in your backyard together and watch the sunset. You might not be able to eat the big spinach salad you loved before your ostomy surgery, but you can turn the same flavors into a blended spinach and tomato soup.

Practice gratitude

You might be thinking “I have cancer. What do I have to be grateful for?” While toxic positivity isn’t helpful, having a daily gratitude practice has many emotional benefits.

Try sitting down first thing in the morning, or last thing at night, and making a list of 5 things you’re grateful for. They can be as big or as small as you’d like. Focusing on the positive things you’ve experienced that day can help you become more aware of the positive experiences and emotions in your life. It won’t make the negative feelings go away, but it can help put them into perspective.

Practice good sleep habits

Good sleep is crucial for your body’s recovery process. Unfortunately, things like steroids, pain, fear, anxiety, and other emotions can get in the way of a good night’s sleep. If you’re struggling with sleeping, try scheduling an alarm in the evening too, letting you know it’s time to go to bed. If you go to sleep and wake up at the same time every day, it can help your body get in a good rhythm. Try not to eat too big a meal close to bedtime, and avoid using screens just before bed. Some meditation and relaxation apps can be helpful to calm your mind before drifting off.

If you’ve tried all these tips, and your sleep has not improved in a few weeks, talk to your family doctor or oncologist about it. They may be able to recommend medications or other strategies to help get your sleep back on track.

Eat a balanced diet and stay active

Although a healthy diet and exercise won’t cure your cancer, staying in good health will make you feel better. The better you feel physically, the more likely you are to feel well emotionally. 

Read more about diet and exercise here.

Work on feeling empowered

When you have cancer, it’s easy to feel as though things are out of your control. Although you always have some element of choice in your treatment decisions, once that decision has been made, you sit back and hope the treatment works. 

Luckily, there are many ways you can feel empowered. First of all, educate yourself about your disease. Request copies of all your medical records, and make sure you understand them. If you don’t, ask your oncologist to explain. Read your pathology reports and familiarize yourself with your biomarkers. We’ve even created a worksheet for you to fill out to make sure you have all your info in one place! Get to know your treatment options so that you can have an informed discussion with your oncologist. If you’re reading this guide, you’re off to a great start. And if you still have questions, come join us in the COLONTOWN Community — we are here to help you.

Find a support group

The people and your life can sympathize with you, but they likely don’t understand what it’s truly like to have cancer. Connecting with others in a similar situation can be very helpful. Support groups can give you a chance to express your feelings in a safe space. They can also be useful for sharing info on testing, treatment options, side effects, clinical trials and more.

If you’re interested in joining a local support group, the social worker at your cancer center should be able to direct you to the right place. 

If you’re not a COLONTOWN Community member already, come join us! COLONTOWN has thousands of knowledgeable members in hundreds of groups, so you can find support for anything you need.

How do I talk to others when I’m not fine?

Talking to friends and family about your diagnosis can be difficult. When you’re newly diagnosed, you may feel overwhelmed and have no idea how to approach the subject with the people in your life. Some people want to run out and tell everyone all at once, and others might want to keep it private for the time being. All of these reactions are completely normal. If you don’t feel like sharing the news yourself, you can delegate. Ask your partner or loved one to share the information with friends and family. You can use a website like CaringBridge, Facebook, or a text group chat to share information about your health.

Once you do start telling people, you’ll likely get a wide range of reactions. Some people will have no idea how to respond. Others will be wildly supportive, and you will probably receive many, many offers to help. It’s a good idea to be prepared to tell people what you need and how you want them to communicate with you about your cancer. Realize that this may change from one day to the next. If you want them to stop asking about how you’re doing, tell them. If you want them to stop giving unhelpful unsolicited advice, tell them. You can also delegate the job to another loved one.

As you continue along your cancer journey, talking about things can become easier, but many patients sometimes find it difficult to relate to friends and family. Small talk and the casual question “How are you doing?” can be very loaded and exhausting. People may feel frustrated that nobody understands what they’re going through. While it’s important that you don’t isolate yourself, don’t put too much pressure on yourself to attend social events if you don’t feel up to it.

If you find yourself stuck in a small talk conversation about your cancer, it can be helpful to prepare a short response in advance. Here are some ideas:

  • “I don’t really want to talk about that right now. How are you doing?”
  • “I’m doing fine for now, but it’s hard not knowing how I will be in a few months.”
  • “I’m not doing so great at the moment, but I don’t want to talk about it right now.”
  • “I appreciate that you are asking, but I’m tired of talking about cancer! How are you?”

Want to learn more about cancer and your emotions? 

Read this article by the National Cancer Institute.

Want to learn more about managing emotions?

Join one of our COLONTOWN Facebook groups:

  • Try 1st Avenue to connect with other stage I patients
  • Check out 2nd Avenue to find other stage II patients
  • Take a look at 3rd Lane to chat with stage III patients
  • In Four Corners you’ll find other stage IV patients  
  • Join Carepartner Corner to connect with other carepartners

Want to join? Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand explanations of biomarker tests. We’re here for you! See our list of Learning Centers here.

Last updated: April 12, 2023