Monthly Archives: May 2014

A Leukemia and MDS Cancer Story

h-sneed

Harold is a Leukemia and MDS cancer survivor who used MyLifeLine.org during his journey. Today he writes a guest blog post for us and shares his leukemia and MDS cancer story.

“I felt knocked back on my heels,” Harold recalled. “I knew something was wrong.” He was right. After a visit to his doctor and a bone marrow biopsy, Harold Sneed was diagnosed with leukemia. He and his wife of 27 years, Debbie, were shocked.

Four years earlier at the age of 59, Harold was diagnosed with myelodysplastic syndrome (MDS) and said he always knew leukemia was a real possibility, but he was still stunned and shaken at his new diagnosis. He immediately underwent intense, high doses of chemotherapy, followed by a bone marrow stem cell transplant. During his treatment, a social worker at his cancer center recommended MyLifeLine.org to Harold and Debbie to keep their friends and family up-to-date on his treatment, inevitable setbacks and continued progress.
“We had so many people who wanted to know about what was going on,” said Harold. “It was so nice to be able to update everyone at once.”

Harold and Debbie recalled the plethora of support they received from family, friends and their community.

“We’ve had people reaching out to us every day through MyLifeLine.org,” he said. “It just amazed me. Even though they don’t always comment, you know they’re following. In addition, when you talk to them, they know your whole story and you don’t have to spend time updating them on everything.”

Since the Sneeds live in Kentucky and travelled to Tennessee for treatment, Harold recalled often feeling isolated after being away from home for long periods of time. “MyLifeLine.org was incredible. I was able to hear from people I haven’t heard from in a long time, whole churches were praying for us, people that lived far away; it really boosted my spirits. I was amazed at what I was able to do with all the support I had.”

After a year of enduring lengthy treatment, unpleasant side effects and exhaustive procedures, Harold’s leukemia went into remission. He continues to fight MDS, but is optimistic and recently celebrated a healthy 30-day check-up at his cancer center in Nashville. Harold said he’s learning to adjust to his new normal, works to keep a positive attitude and thanks “my wonderful wife for being with me all the way.”

5 Ways to Help a Friend With Cancer

When your friend is diagnosed with cancer, the first thing you want to do is help and the last thing you want to do is say the wrong thing. But it’s hard to know what will be helpful.

Just the fact that you’re willing to be a supportive friend is very important. In fact, research shows that cancer patients who have strong support communities have an increased chance at better outcomes. What does it mean to have a strong support community? It’s simply a social connection between people.

Here are some ways you can show your support and provide caring assistance, rather than feeling helpless.

  1. Stay informed about your friend’s health and well-being.
  2. Send encouraging messages and photos.
  3. Learn about your friend’s specific cancer type and treatments.
  4. Volunteer to help with meals, mowing the lawn, child care, or rides to treatment.
  5. Share a smile, send a joke or a funny image.

Managing a support community can be a difficult challenge for cancer patients and caregivers. Returning every phone call, text and request for information can be exhausting.  That’s why MyLifeLine.org Cancer Foundation provides a free tool for this purpose. We’re a nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. A patient – or a friend or family member like yourself, can create a site and invite guests to visit and participate in the online community, where updates, cancer information and encouraging messages can be centralized and tools like the helping calendar and giving angels can easily be used to coordinate volunteers and raise funds. Our ultimate goal is to help relieve the burden of communications for people affected by cancer, so they can focus on healing.

 

What do you say to someone who has cancer?

When I was diagnosed with breast cancer in 2009, I didn’t know what to say to my friends and family, or what I wanted them to say to me.   I did not want to be my usual open, upbeat, sharing self.  I was scared, I was angry, I was lost.  My world had turned upside down.    I didn’t want to make phone calls, I didn’t want to answer emails, I didn’t want to look anyone in the eye and say “I have cancer”.  I decided the best way to share my “new normal” was to set up a website.  I figured I (or my husband) could post a few messages and I could continue to keep all my hurt, anger and fear in myself.

As my friends and family learned of my battle, they took to my website with a vengeance.  Their words of encouragement, support and love wrapped around me like a warm hug, and my heart flowed open to let go of many of the negative feelings.  My friends and family showered me with words of support, encouragement, humor, love and joy as they shared each step of my cancer battle.  Although they probably don’t know the true impact of their support, they truly became my lifeline as I navigated through the world of cancer.  Here is some of my inspiration:

You are an inspiration to those who know you, a blessing to those who love you and a courageous soul to those who fear what you are battling.  I have to say it really hit me when Tarin called and asked for your phone number and said, “Mom, what do I say to Aunt Tricia?”  What do you say? I thought about this for a while and found that what you say is right in front of you.  We are there with you!  We support you! We are scared too! We love you! We pray for you! And we smile at your KICK BUTT attitude!

Thinking of you and your family and saying many prayers. You are one tough cookie and I’m confident that you will KICK BUTT on this marathon.

I’m glad you are hanging in there.  You are a strong lady that I look up to and I really wish I was there with you.

We KNOW you will KICK BUTT!!!  Keep that positive attitude and stay focused on enjoying life.  Attitude is EVERYTHING.

I am so proud of you as it seems you have kept a really good attitude.  We have been saying our prayers for you and the family (believe me I know how much it affects all of them).  Let me know if there is anything we can do for you.

What a great idea this website is!!!  I have my boxing gloves with me so I’m ready to KICK BUTT!!

We are going to ALL fight this together.  You are so lucky to have such a wonderful support system, your family, friends and the top notch fellow workers at PHS-hug each of them for us.  I always knew you were spunky and strong, but the last couple months have shown me just how spunky and strong you really are. KICK BUTT is the most appropriate phrase-we sure will.

You have always been there for everything us coaches need and I hope you realize that we are here for anything that you need. I have no doubt in my mind that you will continue to kick butt as you always have!

This site is fantastic.  It’ll be a great way for everyone to keep up with your victories without overwhelming you with questions 24/7.

Thank you for setting up such a wonderful way for everyone to stay up to date on how you’re doing!  I remember you saying to me that you like that you can come to work and not have it be about cancer.  Having this site will allow us to stay informed and let you know we’re thinking about you without always talking about it!

I just want to let you know I have been thinking about you and wondering how you are doing. I am glad you have set up this web page to keep us all informed; I feel less in the dark.

I know this is hard as I see it every day in our office.  We tell our cancer patients one day at a time.

If you know someone who has been diagnosed with cancer, offer support through your words and actions by offering love, encouragement, humor and yes, tears.  It is so critical for us to feel we are not alone during our battle, that we have our community surrounding us to help us during this difficult time in our lives.   Thank you to my community for helping me to be brave, to fight, to laugh, to cry, to live.  I am, because of YOU.

 

Get your own free, private support website or set one up for someone else by going to www.MyLifeLine.org