Patient Wisdom

Patient Wisdom

Question 20: Where do you turn for support?

 

Factoid:  “We get by with a little help from our friends.” - Beatles

Click here for a list of organizations that provide support to those dealing with a hereditary colon cancer condition. 

I have enjoy art therapy at the local cancer center. I was unable to find a support group for colon cancer. The support groups I tried had mostly breast cancer members. - Tami Arnold

 

I follow the FAP Foundation and other groups on Facebook. It's tough for me as I have a mild version of what everyone else is facing. However, I know [that] if my condition worsens, and I have to have procedures done, that there are people who I can go to for help. - Brooke Porretti

 

Cancer Council Victoria - an Australian not-for-profit cancer support service whom I volunteer with. They have great online nurses who have all had some experience in oncology and also have all information close at hand. - Elaine Duxbury

 

My wife is very supportive, and my kids are understanding. Being able to discuss matters with so many other folks who share our rare disease (in my case, via on-line resources) is a most important support in my case. - Anonymous

 

Online support groups. - Tiffany Probus

 

Family, close friends, my cat, blogs/vlogs by fellow sick chicks, a new adventure…the usual suspects as well as some unpredicted ones. Although some relationships suffer from the weight of illness, others emerge! It looks like I'm going to meet up with a professor who terrified me in college to philosophically analyze my perception of disability! - Dakota

 

1. Jesus Christ, 2. Family, 3. A friend of mine who has FAP. - Brian Hanson

 

Family and my physician have been my support. I have a wonderful husband who has become educated on the disease and is always there for me. I have not been aware of any support group for FAP. - Sandy Bunnell

 

My husband, online Lynch community, my pets. - Lara Breunig

 

My family is my biggest support system. They are fantastic and have always been more than willing to help out and visit when I am sick. Also, [there are] many support groups. - Anonymous

 

My family and friends are very supportive. Even though my friends don't know anyone else with my disease, they have been so supportive! - Anonymous

 

I turn for support to my family and friends, as well as my doctors. My parents have been incredibly supportive as well as my friends. - Anonymous

 

Inward. - Georgia Hurst

 

I talk to my wife. - Malcolm Scott

 

Family, friends and therapist. - Allison Brewer

 

My husband, my parents when they were alive, my step-sons, my sisters and brother, my doctors, my nurses, my relatives (aunts, uncles, cousins), my friends and ,most recently, I have joined support groups on Facebook. - Betty Starr

 

My friends with similar syndromes. - Linda Warner

 

Many Facebook groups and J-pouch.org is a great place for advice or just a place to vent to those that know what you are going through. - Samia Jouni

 

There are websites like: ihadcancer.com, treatmentdiaries.com, inspire.com, blogforacure.com, hystersisters.com, colon cancer alliance, ostomates, navigate cancer foundation, etc. - Emily Wilson

 

Living with FAP Facebook group. - Tiffany Costello

 

My family first, because my dad and 4 sisters have exactly what I do and, if they can’t help me, then I turn to a friend or someone who has been through what I am experiencing. - Melanie Hirschi

 

My husband! - Anonymous

 

My family and friends, medical team, Facebook and the [Familial Adenomatous Polyposis] Foundation. - Michelle Sutter

 

My team, my daughters, my friends if I am in need of someone around. If it is for medical issues I have great rapport with my primary doctor and I can always connect with the team. The online ostomy group is excellent too. - Sandra Redlands

 

Family and friends. - Anonymous

 

Friends, family, and my dog. I also go to counseling from time to time. - Morgan

 

My husband and a friend who has SBS. She understands some of what I'm going through because she has no small intestine.

- Whitley Buckles

 

My animals, books, sometimes my faith. - Kathryn Howard

 

We rely on each other, as there are 5 of us with the disease and we receive support from our team of doctors and nurses.

- Suzanne Pilon

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