Skin Cancer Whats Next Archives

After cancer treatment ends, you will face a whole new world. Whether you are creating a survivorship plan or an end-of-life plan, nothing will be as it was before your skin cancer diagnosis. You will confront new fears, new opportunities to help others, and new social and physical situations.

 

Cancer Survivors: Managing Emotions After Cancer Treatment

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Since the 1980s, doctors have tried to describe the stages cancer survivors normally go through. Most divide them into a version of the three stages described below:

Acute Survival (Living With Cancer) – Covers cancer diagnosis and any subsequent treatment. During this time, patients will undergo treatment and may be invited to participate in a clinical trial to study new cancer treatments. Sometimes services are offered to patients and their caregivers to address emotional, psychological and financial problems.

Prolonged survival (transient cancer): Post-treatment period during which the risk of recurrence is relatively high. Many patients are relieved that treatment has ended, but are concerned that they will not visit the oncologist regularly. During this stage, patients often visit the oncologist two to four times a year, depending on their circumstances.

Permanent survival (living after cancer): survival after treatment and long-term. Although two out of three survivors declare that their lives have returned to normal, a third affirms that they continue to have physical, psychosocial or economic problems. During this stage, most survivors are cared for again by their GP. Ideally, they have developed a long-term follow-up plan with the oncologist for their regular doctor to implement.

Social and Emotional Repercussions of Cancer

In addition to the physical effects of cancer, survivors experience psychological, emotional, and spiritual consequences. Many of them affect quality of life and can manifest many years after treatment. Here are some of the most common problems cancer survivors face:

Fear of Recurrence

Many survivors live in fear that the cancer will return at some point. In some cases, a major event, such as the anniversary of the diagnosis or the end of treatment with the oncologist, can trigger these feelings. Fear can be good if it encourages you to discuss your health changes with your doctor, but it can also cause unnecessary worry. Knowing your own body will help you distinguish between normal changes and more serious symptoms.

Pain

Grief is the natural result of loss. In cancer, losses refer to health, sexual desire, fertility, and physical independence. To overcome your pain, it is important to experience all of these feelings. Support groups and psychological assistance can help you deal with these problems.

Depression

It is estimated that 70% of cancer survivors experience depression at some point. Depression can be difficult to diagnose in cancer survivors, since the symptoms are very similar to the side effects of cancer treatment, such as weight loss, tiredness, insomnia, and inability to concentrate. In a 10-year follow-up study, symptoms of depression have been found to be associated with shorter survival, so seeking treatment for depression is essential.

Body Image and Self-esteem

Cancer survivors who have suffered amputations, disfigurements, and loss of organs such as the colon or bladder often have to overcome their problems to relate to themselves and to others. A negative body image and low self-esteem can affect the survivor’s ability to maintain relationships with their partner, which will have important consequences on their quality of life. Good communication is essential to maintain or regain intimacy after cancer. Consult a doctor if problems persist.

Spirituality

Many survivors feel that life takes on new meaning after cancer and renew their commitment to certain spiritual practices or organized religion. Research indicates that spirituality improves quality of life through a strong social support network.

Survivor’s Fault

Some people feel guilty about surviving cancer when others don’t. You may be wondering “Why me?” Or reevaluate your goals and ambitions in life. If you have a prolonged feeling of guilt, a psychotherapist, a member of the clergy, or a support group can help you express your feelings.

Relations

Possibly the biggest challenge cancer survivors face is how others react to their disease. Friends, coworkers, and family members may feel uncomfortable when discussing the diagnosis of cancer. They can keep silent, avoid you, or pretend that nothing has happened. Others may use humor to try to distract you and not think about your situation, instead of offering to talk about your problems. Cancer can be a long-lasting disease, so it is essential to overcome communication barriers.

Social and Work Life

Social and professional reintegration can be accompanied by many fears: concern about being exposed to a higher risk of infection, lack of enough energy to reach the end of the workday and anxiety about not being able to think clearly due to the so-called “neurological impairment by chemotherapy “or memory loss. In overcoming a life and death situation, many cancer survivors feel alienated from people who have not had the same experience and turn to other survivors for support and friendship.

You may be reluctant to reveal to your bosses and colleagues that you are receiving cancer treatment for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress. Again, honest communication with your colleagues will help you overcome these feelings.


About the author: Diane H. Wong is copywriter at write essay for me service. She is also a professional nutritionist and plans to start her own blog to share her knowledge with others.

10 Ways of Thriving After Cancer

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First and foremost, “surviving” cancer is amazing. After all, cancer is one of the deadliest diseases in the world! So, if you are a survivor, you are indeed worthy of praise. 

There are many types of cancers out there. One thing that they all have in common is that they are a result of uncontrolled growth of abnormal cells anywhere in a body. Early detection of cancerous growth results in a good prognosis as there is nearly no definitive cure for any form of cancer at its late stages.

Again, whether yours was at its late-stage or not and you survived, you are a winner! At this point, you should hold no reserve about cancer resurfacing and instead THRIVE. 

Now that you have survived cancer, the next step is reintegration back into society and doing the best you can to thrive while doing so. 

1. Battle your fear & anxiety head-on 

Long after getting cleared of cancer, survivors have to fight an emotional battle of fear and anxiety. No matter what the medical reports say about their health status, there is the seemingly never-ending fear of the cancer returning. 

This emotional turmoil is insurmountable and almost never avoidable unless you normally just have a strong will. You must quench this fear so that you can thrive.  A chat with your doctor is vital. Disclose whatever concerns you have about your health. Your doctor may even schedule frequent testing and care plans to make you feel better. 

2. Be devoted to your physical therapy sessions 

Cancer is usually for the long term. So, when the health providers eventually manage to get rid of all the cancerous growths, you may be left with a physical limitation like immobility. Such a physical limitation may make life less enjoyable, thus your doctor’s statutory recommendation for physiotherapy.

 Be dedicated to treatment sessions and work closely with the physical therapist as well as your loved ones. Don’t be afraid to ask for continued support as you heal.

3. Try a new hobby 

Don’t rush to get back to your old self before cancer. Try to enjoy the process more by finding new sports or leisure activities that fill your time. 

So, instead of getting mopey and worrying over cancer resurfacing, try knitting for a change, go golfing, try swimming! There is nothing too small or too big to try, and the main goal is to get you taken by any activity other than sitting down and getting paranoid. 

4. Consider returning to work

A defining part of getting reintegrated back into society after cancer is a career. If you were working before cancer, going back to work can help redefine your life. 

If you weren’t, try finding a new skill or going job-seeking. This gives you a sense of normalcy, but even better, it occupies your time! Remember, one of the most important ways to thrive after a battle with cancer is to not dwell on the past and simply enjoy the moment. 

5. Find intimacy with your loved ones 

There is nothing better than speaking to people who genuinely love you. Such emotional talks are sure to renew your confidence and help you build strong emotional support. If you are dating or married, it’ll help a great deal to bear your thoughts before your partner. Keeping it all inside won’t help and may even make you distant from them. 

6. If possible, start exercising

Numerous benefits accompany exercise. These range between boosting your physical endurance to giving your mental health a much-needed boost. 

Aside from that, nothing beats that sense of accomplishment that comes with completing an exercise session every day. Before starting an exercise regime, tell your doctor; and you may have him refer you to a physical therapist with knowledge of care for cancer survivors like you. 

If you are strong enough to exercise independently, start small with home workouts and build your way up to going for a walk at the park and then the gym. 

7. Make A List of Your Fears

This is on emotional terrain. Write down your deepest fears about life after cancer or what you think may prevent you from enjoying this new phase. This may include fear of the cancer returning, fears about your health overall, concerns of satisfying your partner in bed like you once did, fears of losing your job or doing poorly at it, and many more others. 

No matter how many they are, penning these fears down on paper can help you tackle them. After writing, you may even discover that some of these are so insignificant and shouldn’t be any trouble. Either way, you are tackling these problems head-on. 

8. Let go of the past 

This is an essential task if you want to thrive following a battle with cancer. Letting go of the past may be harder for people who have been fighting bouts of cancer over a significant number of years, but there is indeed nothing better than finding a new you. 

Cancer puts a dent in your mental health, so it may pose a challenge to let go of your history. If this is you, speaking to a counselor or even your doctor will be beneficial. 

9. Accept that there are going to be bad days 

It is a part of living to have good and bad days. As a cancer survivor, you can’t escape this, and you may even be more vulnerable, having battled one of the world’s deadliest diseases. As you strive to get back to normalcy, you have to realize that not every day will be good and that the process may be a lot harder than you expect. 

An optimistic attitude and never giving up are crucial to overcoming the dismay or depression that may set in when you’re not successful at something you try to do. You can also create a backup plan for such days e.g., take a walk with your partner, go to the cinema, etc. 

10. Share your experience with support groups 

There is nothing like working closely with people who have had similar experiences with you. Whether they are still battling cancer or not, speaking to others about your own experience surviving the disease will give them a ray of hope. It will equally do you a lot of good. 


Resource links: www.aicr.org, www.curetoday.com, www.inovanewsroom.org

Notable News February 2020

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February may be a short month, but there is no shortage of new and exciting cancer research and treatment news. Could cervical cancer be eliminated for good? Are prebiotics the key to stopping melanoma? Well, take a bite of asparagus and read on to find out.

Vegetables are always an option for healthy eating, but you might want to consider adding (or increasing) two, in particular, to your diet. Asparagus and onions are sources of a prebiotic, and scientists have found that prebiotics help the immune system fight cancer in mice, reports genengnews.com. When the prebiotics, mucin and inulin, were fed to mice, they not only boosted the immune system, but they slowed the growth of implanted melanoma tumors, and delayed drug resistance. A delay in colon cancer growth was also noted. Prebiotics are food for bacteria and they cause growth of the good gut microbial communities, changing their make up, and thus causing the anti-cancer effect. The researchers say the study highlights the importance of the gut microbiome in treating cancer. Mucin is a protein found in intestinal mucus, and inulin is a plant fiber found in asparagus and onions. Learn more here.

With some perseverance and dedication, the World Health Organization (WHO) and other professionals believe cervical cancer could indeed be eliminated by 2120 reports, medicalnewstoday.com. Elimination could occur even sooner in some areas of the world. There are two separate studies that indicate the possibility. One study finds that vaccinating girls against the human papillomavirus (HPV), especially in low and middle income countries, could lead to an 89.4 percent reduction in the cancer. HPV is the top risk factor for cervical cancer. The other study shows that screening is another way cervical cancer could be eliminated. Experts say that if women have cervical cancer screenings just twice in their lifetimes, that could reduce the occurrence by 96.7 percent. The findings of the two studies are being used to establish the WHO’s cervical cancer elimination strategy, which will be presented in Switzerland in May. You can find more information here.

Screenings for cervical cancer may save lives, but could other screenings end up doing more harm than good? Early detection could be leading to over diagnosis of cancers, reports sciencealert.com. Believe it or not, not all cancer cells pose a health threat. Sometimes people have abnormal cells in their bodies for their whole lives and those cells never cause a problem. So, detection and treatment of these cells can potentially do more harm than good if people are being unnecessarily exposed to cancer treatments that can be stressful to the body, say scientists in Australia who have studied the risks of over diagnosing cancer. The researchers determined that breast and prostate cancers are the most over diagnosed and found that both cancers saw a 50 percent increase in occurrence when early screening tools, such as mammograms, were introduced. In the UK research shows that for every woman whose life is saved from breast cancer screening, three women will be diagnosed unnecessarily. The challenge is in finding balance between diagnosing and over diagnosing. More details about what the Australian researchers discovered can be found here.

When cancer is diagnosed and needs to be treated, it’s important to have options. The United States Food and Drug Administration (FDA) approved a new treatment for high-risk nonmuscle invasive bladder cancer, reports urotoday.com. Approved in early January, pembrolizumab (known as Keytruda), gives the 80,000 bladder cancer patients diagnosed each year, another possible treatment option. In trials, researchers found that 40 percent of patients had a complete response to the medication. Learn more about Keytruda’s journey to approval by the FDA here.

Another possible option may be available to women who want to have children, but are infertile after cancer treatment, reports cbsnews.com. A technique called in vitro maturation (IVM) recently resulted in the birth of a baby to a 34-year-old cancer survivor. The technique is still considered experimental, but you can learn more about it here.

Knowing your options is what patient empowerment is all about. Keep reading the Patient Empowerment Network blog to stay informed, and you’ll find more Notable News right here next month. Until then, don’t forget to eat some asparagus!

Fertility Preservation in People with Cancer

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This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

Young Woman’s Melanoma Sparks Advocacy

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This podcast was originally published by I had Cancer on July 16, 2019, here.

Jessica Rogowicz got her first melanoma diagnosis three days before her 25th birthday and another at age 29. Jessica, now 36, talks about her treatment and how she started a foundation for melanoma research and awareness. The I Had Cancer podcast provides personal and truthful conversations with cancer survivors along their journeys. Each episode will feature a different person with their unique perspective on their own fight against cancer. They are sharing their stories to help others who might be facing similar challenges and to say they went from “I Have Cancer” to “I Had Cancer.” If you would like to be a guest on a future I Had Cancer Podcast, send an email to IHadCancer@highmarkhealth.org with your name and phone number. The views and opinions expressed in this program are those of the participants and do not reflect the views or opinions of AHN, its subsidiaries or affiliates. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition.

Melanoma – Online Resources

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Caregiver Resources

Caregiver Action Network

1130 Connecticut Ave, NW
Suite 300
Washington, DC 20036

Phone: (202) 454-3970
www.caregiveraction.org

Caregiver Action Network works to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Family Caregiver Alliance

785 Market Street
Suite 750
San Francisco, CA 94103

(415) 434-3388
(800) 445-8106
www.caregiver.org

FCA seeks to improve the quality of life for caregivers through education, services, research, and advocacy. FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues, and provides assistance in the development of public and private programs for caregivers.

The Caregiver Relief Fund

900 South Wabash Avenue
Suite 603
Chicago, IL 60605

https://caregiverrelieffund.wordpress.com/

A social venture committed to caring for caregivers. Provides resources, assistance and a voice to over 50 million Americans who are currently caregivers to the chronically ill, aged and disabled.

4th Angel

9500 Euclid Avenue R36
Cleveland, OH 44195

(866) 520-3197
www.4thangel.org

The 4th Angel Program is part of the Scott Hamilton CARES Initiative. This is a free, national service which provides a one-to-one supportive relationship (phone or email based) to cancer patients and their caregivers. The program has over 400 patient and caregiver mentors who are at least 6 months post treatment, and continues to train more mentors.

Caregivers4Cancer

P.O.Box 153448
Irving, Texas 75015

(800) 787-2840
(972) 513-0668
Caregivers4cancer.com

Organization strives to educate and assure caregivers and oncology teams there are ways to ease the journey’s relentless demands. Goal is to help caregivers emerge on the other end with less stress, more energy and a feeling of accomplishment that they did all they could for their loved ones.

Caregiver.com

3350 Griffin Road
Fort Lauderdale, FL 33312

954-893-0550
1-800-829-2734
www.caregiver.com

A leading provider of information, support and guidance for family and professional caregivers. Founded in 1995as a producer of Today’s Caregiver magazine, the first national magazine dedicated to caregivers. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers.


Clinical Trials

ClinicalTrials.Gov

The National Cancer Institute at the National institute of Health
Bethesda, Maryland

1-800-4-Cancer
www.clinicaltrials.gov

A registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details.

Oncolink

The Perelman Center for Advanced Medicine
3400 Civic Center Blvd
Suite 2338
Philadelphia, PA 19104

215-349-8895
www.oncolink.org

Comprehensive information about specific types of cancer, updates on cancer treatments and news about research advances. Information is updated every day and provided at various levels, from introductory to in-depth.

Dermatology & Early Detection

Center for Disease Control (CDC) Centers for Disease Control and Prevention
4770 Buford Hwy NE
MS K-64
Atlanta, GA 30341

800-232-4636
cdcinfo@cdc.gov
www.cdc.gov

Federal agency that provides information on cancer prevention and control.

American Academy of Dermatology

930 E. Woodfield Road
Schaumburg, IL 60173

1445 New York Avenue, NW, Suite 800
Washington, DC 20005

(866) 503-SKIN (7546)
International: (847) 240-1280
www.aad.org

Founded in 1938. With a membership of more than 17,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. Find free screening locations as well as information on research, diagnosis and treatment.

DermWeb

The Department of Dermatology and Skin Science
University of British Columbia
835 West 10th Avenue
Vancouver, B.C.
Canada V5Z 4E8

604-875-4747
www.DermWeb.com

DermWeb is a premier destination for dermatology links and resources on the Web. There are several areas of interest for practicing dermatologists, for dermatology students, and for the general public.

The Skin Cancer Foundation

149 Madison Av.
Suite 901
New York, NY 10016

212-725-5176
1-800-754-6490 (1-800-SKIN-490)
www.skincancer.org

Educates about skin cancer and its prevention by means of sun protection; as well as the need for early detection, and prompt, effective treatment. It is the only international organization devoted solely to combating the world’s most common cancer, now occurring at epidemic levels.

National Cancer Institute

6116 Executive Boulevard, Suite 300
Bethesda, MD 20892

1-800-422-6237 (1-800-4-CANCER)
TYY: 1-800-332-8615
www.cancer.gov

The NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.


Prescription Drug Assistance

Needy Meds, Inc.

P.O. Box 219
Gloucester, MA 01931

(800) 503-6897
www.needymeds.org

This service provides information on drugs and offers applications (if available) for financial assistance, coupons for drugs, discount drug cards, free/low cost clinics and government program information.

Together Rx Access Card

One Outlet Lane
Bald Eagle Court
Lock HavenPA 17745

(800) 444-4106
http://www.togetherrxacces.com

Free prescription savings program for qualified enrollees, which provides savings on more than 300 FDA-approved prescription drugs.

Partnership for Prescription Assistance

1-888-4PPA-NOW (1-888-477-2669)
www.pparx.org

This program helps uninsured and financially struggling patients get access to nearly 500 healthcare and prescription assistance programs that offer medicines for free or nearly free.

National Conference of State Legislatures

State Pharmaceutical Assistance Programs
http://www.ncsl.org

More than 30 states have programs that will give discounts on prescription drugs, often for free. Visit web site to learn more about the various programs state legislatures have developed.

RxAssist

111 Brewster Street
Pawtucket, RI 02860

401-729-3284
www.rxassist.org

Patient assistance programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles.

RxHope

P.O. Box 42886
Cincinnati, OH 45242

1-877-267-0517
www.RxHope.com

Advocate in making the patient assistance program journey easier and faster by supplying vital information and help.


Support

The Cancer Support Community

1050 17th Street, NW
Suite 500
Washington DC 20036

202-659-9709
cancersupportcommunity.org
help@cancersupportcommunity.org

An international non-profit dedicated to providing support to people affected by cancer. Services are available through a network of professionally led community-based centers, hospitals, community oncology practices and other non-profits, as well as online.

CanCare

Fighting Cancer with Hope
9575 Katy Freeway, Suite 428
Houston, Texas 77024

713-461-0028
1-888-461-0028
www.cancare.org

Cancer survivors of more than 50 different types of cancer volunteer for CanCare to provide emotional support to those currently facing a battle with cancer. Family members of survivors provide emotional support to family members of cancer patients.

Caring Bridge

1715 Yankee Doodle Road
Suite 301
Eagan, MN 55121

651-452-7940
651-681-7115
www.caringbridge.org

Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.

MyLifeLine.org Cancer Foundation

55 Madison St., Ste. 750
Denver, CO 80206

303-549-0405
www.mylifeline.org
support@mylifeline.org

A 501(c)(3) nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.

CancerCare

275 Seventh Ave. Floor 22
New York, NY 10001

1-800-813-HOPE (4673)
info@cancercare.org
www.Cancercare.org

National Office serves people with cancer and their loved ones throughout the entire 50 states, Puerto Rico, and the U.S. Virgin Islands.

US Dept of Health & Human Services

P.O. Box 1133
Washington, DC 20013-1133

healthfinder.gov
healthfinder@nhic.org

Write to healthfinder.gov at Health and Human Services Department for easy entry point to trustworthy health information.

National Cancer Institute (NCI)

1-800-4-cancer
www.cancer.gov

Very comprehensive information from the US Government agency wing of the National Institute of Health (NIH).

Web MD

A medical education site from a company that helps both consumers and healthcare providers navigate the healthcare community.


Hospice

HFA Hospice Foundation of America

1710 Rhode Island Ave, NW
Suite 400
Washington, DC 20036

National Hospice Foundation

1731 King Street, Suite 200
Alexandria, Virginia 22314

Caring Connections

800-658-8898
Multilingual Line: 877-658-8896


Hotlines and Forums

Dana Farber Cancer Institute

Family Studies Cancer Risk Line
Voice: 1-800-828-6622
www.dana-farber.org

Information regarding familial cancers

Patient Advocate Foundation

1-800-532-5274 (Mon.-Thurs., 8am-8pm; Fri., 8:30am-7pm EST)
www.patientadvocate.org

Provides education and legal counseling to cancer patients (relative to a diagnosis) concerning managed care, discrimination, insurance and financial issues.

Hereditary Cancer Center

Creighton University School of Medicine
2500 California Plaza
Omaha, NE 68178

1-800-648-8133 (Mon.-Fri., 8am-5pm CST)
http://medschool.creighton.edu/centers/hcc/

Studies family-linked cancer. Counseling, information on clinical trials, cancer and hereditary factors.

Cancer Information Service

Sponsored by National Cancer Institute.
1-800-422-6237
www.cancer.gov

Provides information about cancer and cancer-related resources to patients, the public and health professionals. Offers one-on-one smoking cessation counseling and literature. Free publications.

Skin Cancer Foundation

1-800-754-6490 (Mon.-Fri., 9am-5pm EST)
www.skincancer.org

Provides educational materials and information on skin cancer and treatment.

Cancer Research Institute

1-800-992-2623 (Mon.-Fri., 9am-5pm EST)
www.cancerresearch.org

Provides general cancer resource information. Supports leading-edge research aimed at developing immunologic methods of preventing, treating and curing cancer.

Cancer Information and Counseling Line

1-800-525-3777
(Mon.-Fri., 8:30am-5pm MST)

Provides current medical information and counseling for cancer issues.

Cancer Hope Network

1-877-467-3638 (Mon.-Fri., 9am-5:30pm EST)
www.cancerhopenetwork.org

One-on-one support offered to cancer patients and their families undergoing cancer treatment from trained volunteers who have survived cancer themselves.

BLOCH Cancer Hotline

1-800-433-0464

Networks persons with cancer and home volunteers with same type of cancer. Free books about cancer.


Insurance/Financial Assistance

Good Days

6900 N Dallas Pkwy,
Suite 200
Plano, TX 75024

(877) 968-7233
(972) 608-7141
http://www.mygooddays.org/

Good Days exists to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need.

HealthWell Foundation

P.O. Box 4133
Gaithersburg, MD 20878

800-675-8416
www.healthwellfoundation.org

The HealthWell Foundation® provides full or partial financial assistance to eligible individuals who cannot afford their insurance co-payments, premiums, deductibles for certain treatments, and other out-of-pocket health care expenses.

Medicare & Medicaid

7500 Security Blvd
Baltimore, MD 21244-1850

800-318-2596
www.healthcare.gov/medicaid-chip/

800-MEDICARE
www.medicare.gov

Medicare is a federal system of health insurance for people over 65 years of age, and Medicaid assists low-income individuals and certain younger people with disabilities.

National Patient Advocate Foundation (NPAF)

725 15th St, NW, 10th Floor
Washington, DC 20005

202-347-8009
www.npaf.org

NPAF provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.


Lodging

Joe’s House

505 E 79th Street
New York, NY 10075

877-563-7468
www.joeshouse.org

Joe’s House website lists thousands of places to stay across the country near hospitals and treatments centers that offer a discount for traveling patients and their loved ones.

Healthcare Hospitality Network, Inc.

P.O. Box 1439
Gresham, OR 97030

(800) 542-9730
http://www.hhnetwork.org/

The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. The mission of HHN is to support homes that help and heal to be more effective in their service to patients and families.

Hope Lodge –American Cancer Society

(800) 227-2345
WEBSITE

Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Currently, there are 31 Hope Lodge locations throughout the United States. Accommodations and eligibility requirements may vary by location.


Lymphedema

National Lymphedema Network

116 New Montgomery Street, Suite 235
San Francisco, CA 94105

1-800-541-3259
415-908-3681
www.lymphnet.org

A non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.


Other Types of Melanoma

Mucosal Melanoma

Oral Cancer Foundation
3419 Via Lido #205
Newport Beach, CA 92663

949-723-4400
www.oralcancerfoundation.org

The Oral Cancer Foundation is a non-profit 501 (c) (3) public service charity that provides information, patient support, sponsorship of research and advocacy related to this disease. At the forefront of our agenda is to promote solid awareness in the minds of the American public about the need to undergo an annual oral cancer screening and an outreach to the dental community to provide this service as a matter of routine practice.

Ocular Melanoma Foundation

P.O. Box 29261
Richmond, VA 23242-0261

www.ocularmelanoma.org

OMF aspires to be the top destination for up-to-date OM-related educational information, a meeting place, and advocacy resource. For doctors and researchers, OMF strives to be the connective tissue, facilitating interdisciplinary cancer research.


Pain Management

American Academy of Pain Management

The largest pain management organization in the nation and the only one that embraces an integrative model of care, which is patient-centered, focuses on the “whole” person, is informed by evidence, and brings together, all appropriate therapeutic approaches to reduce pain and achieve optimal health and healing. The Academy offers continuing education, publications, and advocacy.

American Chronic Pain Association

PO Box 850
Rocklin, CA 95677

1-800-533-3231
https://theacpa.org

Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.


Radiation

RT Answers

American Society of Radiation Oncology
8280 Willow Oaks Corporate Drive, Suite 500
Fairfax, VA

703-502-1550 or 1-800-962-7876
www.rtanswers.org

Web site explains to patients, their families and the public how doctors called radiation oncologists use radiation therapy to treat cancer safely and effectively.

Radiation Therapy Fact Sheet

National Cancer Institute
www.cancer.gov

A fact sheet that defines the different types of radiation therapy and discusses scientific advances that improve the effectiveness of this treatment.

Melanoma: Learning to Live With It

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This video was originally published by American Cancer Society on May 15, 2015, here.

Tom Crawford’s battle with melanoma has been a long one. He shares some of the wisdom he’s learned along the way.

 

Melanoma Resources

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After Cancer, Ambushed By Depression

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At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?

Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”

Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.

What Causes Depression?

Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness.  However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.

In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.

Incidence of Depression in Cancer Survivors

Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life   event like cancer have an increased risk of depression that can persist for many years.  While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.

The Challenge of Identifying Depression in Cancer Patients

Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients.  This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.

Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.

Are You At Risk of Depression?

Depression can occur through a combination of factors, with some of us being more prone to depression than others.  Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.

Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.

Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.

Try answering the following two questions.

Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?

If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.

Depression Checklist*

(Tick each of the symptoms that apply to you)

  • Trouble sleeping with early waking, sleeping too much, or not being able to sleep
  • On-going sad or “empty” mood for most of the day
  • Finding it hard to concentrate or make decisions
  • Feeling restless and agitated, irritable or impatient
  • Extreme tiredness and lethargy
  • Feeling emotionally empty or numb
  • Not eating properly; losing or putting on weight
  • Loss of interest or pleasure in almost all activities most of the time
  • Crying a lot
  • Losing interest in your sex life
  • Preoccupied with negative thoughts
  • Distancing yourself from others
  • Feeling pessimistic about the future
  • Anger, irritability, and impatience

Add up the number of ticks for your total score: _______

What does your score mean?

  • 4 or less: You are unlikely to be experiencing a depressive illness
  • 5 or more: It is likely that you may be experiencing a depressive illness.

NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.

Depression – The Way Forward

It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.

The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there.  Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression.  There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.

The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.

A Note on Helping a Loved One with Depression

Perhaps you are reading this because you’re concerned about a loved one who might have depression.   You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.

The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.


*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.

Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier

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Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.

Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural

The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.

In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.

Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home

Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.

Don’t Forget Their Mental Health

Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.

For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

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Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

5 Ways to Have a Productive Day with a Chronic Illness

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“Having a productive day is very subjective; what is productive for one person is not for another”.

Some days, I find waking up, washing and eating productive. Others assess,  I am being productive when I  do University work.  What I have noticed though – is we all have tasks that need to be completed and this can send us into panic mode. The vicious cycle, of where to start and where to finish has a ripple effect – like a child who got denied candy at the fun fair.

If you are someone sat there reading this with a chronic illness, I am sure you have an inkling of the cycle I am talking about. If you don’t well… I sit here, in envy.  What I am going to call the ‘ torrential storm cycle’ makes you question which direction to go in first.   Anxiety and stress are no strangers, crawling around your body, taking its toll , physically and mentally.  This post is designed to stop you in your tracks, so you aren’t continuously interrogating yourself about ability and self-worth.

“I spend 90% of my time in bed, but a chronic illness does not mean accomplishing your goals are not possible”.

Achieving those goals may just take comprise, planning and longer than you anticipated.


5 Ways to have a Productive Day with a Chronic Illness

1. Evaluate tasks ft. the spoon theory

If you haven’t heard of Christine Miserandino’s Spoon theory , it is a great place to start to help you have a productive day.  The theory in a nutshell, is that anyone who is chronically ill has 12 spoons each day (each one resembling energy) and spoons are exchanged for tasks.  The amount of spoons exchanged will depend on factors such as the length of the task and how strenuous. The point here, is spoon must be used wisely so you don’t burn out. By ordering tasks by importance you can identify what needs to be done on what day and start to put a plan in motion.

spoon-theory-e1510325926400.jpg

In reality, you may find executing a plan is not always possible. However, the spoon theory gives you a general consensus of how much you can get done in a day.

You may find – once you start having a productive day you are at the opposite end of the spectrum. At Uni, I get told a theory is just that a theory. I am taught to challenge theorists view. So it may not be a surprise to hear I wasn’t a firm believer of the Spoon theory at first.  I was so productive one day I felt on top of the world. I couldn’t believe my eyes. I had completed an exam, handed in an assignment, found a job, booked a flight, travelled home from Uni and packed for a holiday and cuddled my little bunny.

Shortly, after this semester came to a close – I realised I used the reserve of spoons for months. I had to fly home 3 weeks early from working abroad, quit the job I found and was  behind in every subject at Uni. Barely, attending lectures and hospital appointments.  What I am trying to emphasise, is pushing yourself one day really can have a detrimental effect on your health.

“You need to work out what is realistic to get done in a day for YOU”.

 Which takes me to by next point…


 2. Break down tasks

 Breaking down tasks makes things more manageable.  Something,  I am training myself in like a disobedient dog. I am one of those people who seeks to think holistically to even do a task.  However, breaking down tasks can relieve stress, because you know you are achieving something – which has got to be better than nothing, right?

goal

I have found people have been more understanding about my illness when they can see that I am trying rather than wallowing in self-pity.  The amount you need to break-down a task will depend on its complexity. It may be a case of trial and error, but you know your body better than anyone in time you will have this down to a tee.

If it’s something academic, you could try and break things down with titles and research areas and tie the ideas together later.  You may not get the best grades you are used to due to time constraints.  However, at least you will pass and can try and work harder when you are feeling a bit brighter on future work. If the task is practical, like cooking, you could do prep at a certain time and then cook later in the day.  Or if you’re a little bit cheeky – ask someone to help you to make the task manageable.


3. Follow your Body Clock

Most people would say, sort out your body clock first and foremost. It may work, but it is something I have been trying to do for over 10 years. My body just likes to be up during the night. The fatigue and pain is more manageable after I have digested by one meal per day.

“To have a productive day you must follow your natural body clock”.

You don’t want to set yourself up for failure by taking a U-turn and trying to achieve tasks when your energy levels and pain threshold is low.

body clock

“Remember you can always move tasks to another day as long as you’re motivated to accomplish them”.


4. Relax… just not too much

Whether you have a chronic illness or not, everyone should take time to wind down.  If you’re fortunate enough TAKE a bath, or go and visit someone who does! Watch a comedy, listen to music or sit in silence, do what works for YOU. I am not saying you are not going to wake up still feeling fatigued because you probably will BUT subconsciously your body and mind is still getting a valuable break and you get a hint of happiness.  I find relaxing whilst doing a task slowly usually gives me the right balance. However, this may not work for everyone.

“Just remember, don’t relax too much or you won’t get anything done”.

bath.jpg


5. Relieve stress with a pet

Patting pets are proven to having a calming effect on humans (Rodriguez2012), which may help you to think more clearly and be more productive! It is ideal if you own a pet and go and give them love when you are stressed and they are in a good mood. If your pet is moody, trust me try hugging your friends’ pet or the other four tips AND come back to this one later.  When my pets are hungry they treats me like food and it makes me feel rejected and has the opposite effect.  If you cannot keep an animal, I suggest you look out for the nearest dog on your walks or go visit an animal shelter. That way you can have your rare day out, killing two birds with one stone.


This blog was written by Morgan Shaw and originally posted on her blog, Brains & Bodies, here.

Notable News: Chemobrain

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Sometimes the most notable information isn’t the latest research or current news story. Sometimes what is most notable is what is most pertinent to patients and survivors. So, this month when a survivor shared her struggle with “chemobrain”, it seemed like something worth looking into. Chemobrain, also called chemofog, is something cancer survivors have described for decades, says cancer.gov. For months, or sometimes years after treatment, survivors find that they struggle with their memory, paying attention, and processing information. Labeled chemobrain because so many of the survivors had chemotherapy, the actual cause isn’t completely known. For many years, patients who complained about chemobrain were dismissed, but now, the condition is widely acknowledged by the medical community. The cognitive issues can be associated with treatment of many types of cancer, but much of the research is focused on breast cancer survivors. Studies have shown that 17 percent to 75 percent of breast cancer survivors showed varying forms of chemo brain from six month to 20 years after treatment. Further research is being done to understand why some do and some don’t get chemobrain and what actually causes the cognitive issues. Chemobrain is for real; survivors who struggle with it, know that for sure. More information about chemobrain can be found here, and a top ten list of what survivors want you to know about chemobrain can be found here.

Chemobrain isn’t the only thing survivors need to consider after treatment. They need to stay healthy to lower their risk of recurrence or of getting another form of cancer. According to cdc.gov, follow-up care as ordered by your doctor is critical, but so is making healthy choices. Healthy choices include quitting smoking and/or avoiding second-hand smoke, limiting alcohol consumption, protecting your skin, eating fruits and vegetables, maintaining a healthy weight, staying active, and getting a flu shot every year. More resources for healthy living after cancer can be found here.

Healthy living, research continues to show, is also critical in preventing cancer. Researchers have found a direct link between sugary drinks and the accelerated growth of tumors in colorectal cancer, reports medicalnewstoday.com. The research, done on mice, will need to be expanded before the findings can be applied to humans, but the research does suggest that consuming sugary drinks can reduce the time it takes for cancer to form. More about the study can be found here.

While you may not have been able to avoid it in the news, there is something else you might want to avoid in order to prevent cancer, reports komonews.com. A study shows that chemicals, found in the weed killer Roundup, increase the risk of Non-Hodgkin Lymphoma by 41 percent. That makes the link between the weed killer and cancer stronger than was previously believed. The studies concerning Roundup and cancer continue, and more information can be found here.

There are some things about cancer that we may never understand, such as who will or won’t get chemobrain, but research continues to provide information about ways to prevent cancer, ways to live well after treatment, and ways to lower the risk of recurrence, and that is information that helps and empowers us all.

Everything You Need to Know About Dating with a Chronic Illness

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If you live with a chronic illness like pulmonary fibrosis, diabetes or Crohn’s disease, your dating life is going to look a little different–and that’s okay. Being single and navigating the world of dating is challenging for everyone, but it can be especially difficult when your life comes with complications like needing to pack medication every time you leave home for more than a few hours.

Finding someone who shares your interests and who will support you through life’s ups and downs takes time, so be patient and have fun. Whether you choose dating sites, singles events, clubs or meetups, putting yourself out there will help you find that special person who will love you unconditionally–even on your worst days. If you are single with a chronic illness, follow these tips to make your dating journey a little easier.

Be Upfront About Your Illness

Deciding when to disclose your illness to a potential romantic connection is entirely up to you but consider telling them about it at the beginning of your interaction. It can be difficult to open up about something so personal to a stranger you don’t know and trust, but it can help you weed out people who aren’t worth your time. If someone isn’t going to accept all of you and love you the way you are, that person isn’t worth dating.

If you are anxious about discussing your illness with a date, why not use technology to your advantage? Tell them about it over an email, text message or phone call. People’s first reaction when they find out about your illness may be shock or discomfort, so allowing them time to unpack that information before you sit down for a date can help you both decide if moving forward is right. Plus, by the time you meet up, they’ll have had a chance to let it settle and come up with meaningful questions they have about your illness and how it affects your life. Being upfront is scary, but it’s an incredibly helpful dating tool.

Highlight Your Best Assets and Don’t Be a Victim

You’re going to be just as self-conscious on a first date as anyone, so practice the best piece of dating advice out there and play up your best assets! If your illness has caused some weight loss or weight gain, go shopping for an outfit that fits great and highlights your favorite body parts. Experiencing hair loss? Try a cool hat or an updo. Figure out what you love most about yourself and play up those areas while minimizing the things that make you feel self-conscious. Confidence looks hot on everyone.

People are going to follow your lead when it comes to your illness. The more relaxed you act about it, the better they will feel about it. If you are sad about it, they will feel sad about it. Lead by example and don’t walk around holding up a sign that says you’re a victim. You’ve got to love yourself before anyone else can love you–with or without a chronic illness.

Be Willing to Adapt

Things aren’t always going to go as planned, so adaptability is key to avoiding some of the frustrations of dating with a chronic illness. You might have just spent hours getting ready for a date and then realize you need a nap. That’s okay. Sometimes your significant other may want to do something your body won’t let you do. It’s going to be frustrating at first, even embarrassing. But once you and your partner learn that plans will sometimes change, you’ll see that it doesn’t need to affect your relationship negatively.

If you have dietary restrictions, consider alternatives to the dinner date. We tend to have it hard-wired into our brains how a date should look, but quality time can be spent in many ways. Do something outside, enjoy the arts, see a movie and pack your snacks from home. Who cares if your dating life looks a little different than it does in cheesy romantic comedies? Life happens and the more willing you are to adapt, the better you can love and be loved.

Don’t Overdo it and Laugh it Off if You Do

Adventure sports or extreme roller coasters might not be the best first date ideas if you live with a chronic illness. Don’t pretend like something is fine if it’s not. If you have a migraine, you’re not going to have fun at a rock concert, and if you are miserable, your date isn’t going to have fun either. It’s better to be upfront about how you are feeling and what you can do than try to tough it out and deal with the consequences later. Pretending isn’t fun and it’s not a good way to get to know someone.

When you do find yourself in a less-than-ideal situation, remember to laugh it off. You’re going to fall sometimes or need to sneak away to give yourself medication or treatment in an awkward way. Don’t take it too seriously. There are many circumstances you go through with a chronic illness that are silly and it’s best to laugh about them rather than make them a big deal.

 

Recognize When They Aren’t Worth Your Time

Some people just don’t have what it takes to handle someone’s health issue. Some people lack empathy or don’t have the willingness to nurture others. If someone is insensitive, rude, describes you as “difficult” or their lifestyle contradicts yours, you need to let them go. People who are worth your time and energy as a friend, let alone a potential romantic partner, will understand that you have good days and bad. They won’t ever fully understand what you go through, but they’ll want to try. They’ll be respectful, supportive and loving.

Remember You Are Worthy of Love

Don’t define yourself and your personality by your illness. You are a person, first and foremost, who happens to be sick. When you stop thinking of yourself as an illness, others will, too. You may have certain limits in life, but that doesn’t make you less worthy or capable of love. Not by a long shot.

 

Tips on Finding a New Job or Changing Career after Cancer Treatment

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In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”