What Friends Should Know About My MDS Journey

By Connie Connely

2 min read

I was diagnosed with myelodysplastic syndrome (MDS) in 2017. Yes, it's a real thing. I've always thought it sounded like something from Star Trek, maybe something Mr. Spock would acquire. My oncologist explained that my bone marrow was not working correctly. My bone marrow was producing immature cells called blasts. This causes fatigue and difficulty fighting infection.

Life does not stop because of cancer. Bills have to be paid, laundry done, the house cleaned, and the yard mowed. Luckily, I had just retired from teaching when I received my diagnosis at the age of 61. The day I received the news, I kept thinking, so this is why I was supposed to retire. Teaching can be exhausting.

What I wish my friends knew about my life with MDS

1. Give sincere compliments when you see me, then stop. I never get tired of hearing, "You look great, Connie!" Please don't add, "You look better than you did; you aren't as pale." I hate that!

2. Don't assume because I look well that I feel well. I had a lady scold me at a luncheon because I wasn't visiting with people. Really? It was an effort just to be there.

3. If I tell you I don't feel up to doing something, believe me. Don't scoff when I say I need to rest. I am trying to stay well.

4. Ask what I need. Here's a good example. My mother was turning 88 years old when I made my first trip to MD Anderson. My friend and her husband took Mother out to dinner so she wouldn't be alone on her birthday. Great friends! It was the best thing they could have done for me.

5. Please include me in your plans. I want to come to your party. I might not stay the whole time, but I will try to be there. Don't assume I can't make it.

6. Keep in touch. A card in the mail is lovely, but a text message will cheer me up too.

7. There are more than 200 kinds of cancer! My cancer will look very different from your neighbor's, so we can't compare. There is no one size fits all treatment or a quick cure.

8. Don't give advice unless I ask for it. I know you mean well, but your advice might sound judgmental. Your sister-in-law cured herself by eating healthy? So you think I don't eat enough broccoli or I drink too many Dr. Peppers?

Every cancer journey is different

Everyone has a different journey with cancer. We have different reactions to our challenges. We need people in our lives who bring joy. I am blessed with many friends who do just that! I hope you are, too!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Ramae Hamrin Moderator & Contributor
I have never understood MDS, Connie, so thank you for the great explanation! I found teaching exhausting, as well, and now I think that it was the myeloma, which I had without realizing it. I would come home and sleep nearly every day. Do you think you had MDS that last year(s) of teaching, making it even harder? I am so glad you are blessed with such a good group of friends. You are spot on with your advice. I had 3 impromptu visits from friends this week, and it meant the world to me!
1. Connie Connely Contributor
 Thank you, Ramae! I knew I had low red and white counts, so I thought that was the reason for my fatigue. I think the last year and a half I taught, the MDS was the culprit.
Daniel Malito Moderator
<inline-mention user-id="3639405" username="Connie Connely"/> These are all fantastic points and a wonderful read for anyone who may be dealing with a loved one of friend who was recently diagnosed. The more info out there, the better. Good stuff. Keep on keepin' on, DPM
1. Connie Connely Contributor
 Thank you, Daniel!
Susan Gonsalves Moderator & Contributor
@CConnelly Excellent post. You are lucky to have a lot of understanding friends. Sometimes, blood cancer scares people off or they think you are exaggerating the toll it takes. I especially like the point about believing you when you need rest... I get eye rolls if I have to refuse an event I know involves a long bit of travel or a lot of activity. Self-preservation all the way! After 5 years it has become easier for me not to stress out over what others think or how they react. Best wishes to you.
1. Connie Connely Contributor
 Thank you, Susan!
Ann Harper Moderator & Contributor
<inline-mention user-id="3639405" username="Connie Connely"/> I love your post. My daughter and I had a conversation about exactly this. When she had cancer, she was asked lots of questions she took offense to. I'm pretty sure the people didn't mean it quite as she took it, but we all should think before we speak. This is a great post to share to everyone. I'm sure it would be well taken by most people. This would definitely be a lesson learned for most of us - even if we have cancer. Thanks!
1. Connie Connely Contributor
 Thank you, Ann. It is nice to receive positive feedback.

Community Poll

Have you taken our In America Survey yet?