My Leukemia 'Tool Box' of Helpful Resources and Cancer Hacks
I’m glad there was no such thing as Facebook when I was in college. Could you imagine a digital, permanent documentation of just one of those events? It wasn’t pretty. Oh, sure, there are a few photos hanging around in albums. But not very many. Developing film was expensive, you know.
Definitely one of the “perks” of going to high school and college in the 80s was the lack of the internet and instant information. But today, the internet and its endless instant resources is the cornerstone of my CML (chronic myelogenous leukemia) survival kit — or my cancer hacks.
There are many “closed” and “secret” support groups on Facebook. Being “closed” or “secret” means only people who are also members of the group can see what is posted on the group page. I can post to any of these groups and get an answer to a question or words of encouragement within minutes.
One of the biggest topics in these groups is which medication everyone is on, what side effects they are having and how are they dealing with the side effects. It’s an instant support group, 24-hours a day.
A few of the groups I belong to are:
- CML survivors
- Friends by choice … CML sisters by blood (women only)
- Brothers and sisters by CML blood
- Living with CML
- CML survivors and caregivers
To locate these, or any other Facebook group, type a search term in the Facebook search bar. Try typing CML. When you see one you like — maybe there is a group near where you live — you’ll need to click the “Join Group” button. You should get a response to your request within a day.
Are you part of a Facebook group? Which ones?
Game Day
As I was doing research on the “super dangerous but absolutely necessary” chemotherapy pills I take, I found out the company that makes my pills has some programs in place to help the CML patient and family. One is getting ready to launch this weekend — Ph+ CML Game Day: An educational program for patients living with Philadelphia chromosome-positive CML and their caregivers.
If you have CML, you and your caregiver should both plan to attend one. The caregiver and I are hoping to go to the one soon.
These are one-day events held around the country with sessions focusing on coping and managing your life living with CML. Physicians and healthcare professionals are scheduled to be there, as well as the CML celeb and patient, Kareem Abdul-Jabbar. By going, you’ll also have an opportunity to meet other CML survivors. It’s a game changer.
To register, see the upcoming schedule and who is scheduled to speak go here.
Oh, and the events are free.
Are you planning to go? To which event?
The Leukemia & Lymphoma Society
LLS, The Leukemia & Lymphoma Society, has a great website where you can find all sorts of disease-specific programs. They do an especially good job at caring for the caregiver.
Start by clicking the LLS link and then click the tab for disease information and support. There you can select things such as leukemia, managing your cancer, or for caregivers. You can request free educational materials and take part in a discussion board or online chats. LLS also has a co-pay assistance program to help with the cost of medication and doctor visits.
Cancer Hacks
Say what you will about Lance Armstrong, but I think the Livestrong Foundation absolutely rocks. One of my favorites is Cancer Hacks, which is powered by Livestrong. Basically, it’s hacks (or tips) from other cancer survivors on things such as:
- Researching your treatment options
- Low blood count
- Safe food suggestions
- Home changes
- Dealing with emotions
You can explore various hacks or even submit your own.
Livestrong also has an app on iTunes I use called the Livestrong Cancer Guide and Tracker App. You can track your doctor appointments, test results, journal, etc. Free on iTunes but you’ll need to create a Livestrong account. Or, you can get a print version of the Livestrong Guidebook Planner and Journal for free.
Do you have a cancer hack of your own?
Here’s where I need a disclosure statement. These are just a handful of the plethora of resources available online for cancer survivors and their families. I didn’t even list the American Cancer Society.
I’m sure I left out one of your “favorite” resources. Don’t get mad. Share it!
This post was originally published on PattiMoonis.Blogspot.com.
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Getty Images photo via Urupong
I’m a remarried widow, mother of 7 teenagers, living with a crippling illness (Ehlers-Danlos Syndrome) and recovering from a life-saving bone marrow transplant for leukemia. Patti writes real & raw.
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