I Found Out What Lymphedema Was After Years of Fighting It With Cancer

Today is Lymphedema Awareness day. Have you ever heard of Lymphedema? Do you have Lymphedema? Not many people know what Lymphedema is, just like myself. I just found out what Lymphedema was two months ago- after all these years suffering with it.

Lymphedema is a build up blockage from your Lymphatic system which contains fluid. The fluid causes swelling, which is unbearable for many. Lymphedema can occur anywhere on your body depending on where you had surgery. For example, Lymphedema for me occurs in my neck, throat and also my hands. I can actually feel watery fluid which, moves back and forth, when I move around.

Did you know you can develop Lymphedema from other diseases too, not just from cancer surgery?

My radiation oncologist told me there are two types of Lymphedema diagnosis. Primary Lymphedema, which is when you are born with abnormalities in your lymphatic system, and Secondary Lymphedema, which occurs as a result to damage to your lymphatic system. Some of the known causes are chemotherapy, radiation, surgery, and any trauma to your body.

I was diagnosed January 2018 with Chronic Lymphedema by my radiation oncologist. The watery swelling in my neck has been worse than ever, and I was told I might have to have my neck drained it was so severe. Most times, I have trouble breathing too. It is scary.

After 7 grueling years with swelling I finally have an answer from a different cancer center and doctor. I’m so used to my neck being swollen that I thought it was normal after my total thyroidectomy surgery and radiation in 2012 and 2013. The more radiation treatment I had the worse my neck area got. Because I was misinformed for too long I have to start physical therapy for eight months. I am scheduled to see a Certified Lymphedema Therapist at the end of the month and am grateful for this opportunity. Too many cancer centers and doctors do not realize the benefits of this therapy for head and neck cancer patients. It’s a shame how much they don’t tell you about this surgery and the side effects.

Once you are diagnosed with Lymphedema by your doctor, he/she will tell you need physical therapy. Here are some of things I was told to do prior to physical therapy that I want to share:

1. Find a Lymphedema therapist. Once diagnosed, this is the first step you can take.

2. No ice or heat packs. Do not ice your swollen area. I was icing my neck and chin area almost every 2 hours thinking the swelling would go down. Turns out that ice and heat actually make it worse. I found out from other cancer survivors on a Facebook group and my nurse assistant decided to tell me after the fact.

3. Look into a compression stocking. I was informed to purchase one for my head and neck if I need it. There are stockings available for other body parts and help with circulation and reducing swelling.

There is no cure for Lymphedema. I am here to advocate for all of you to let you know that Lymphedema is REAL! You don’t have to feel alone with this. In the next few weeks, I am trying to find ways to cope with this anxiety from the Lymphedema by doing chair yoga, massages and learning relaxation techniques. Please remember this is my personal experience, so everyone is different. Once I am cleared I will be sharing tips, pictures and what I have learned during physical therapy. Feel free to follow along on my Facebook group.

What is your experience with Lymphedema? Share in the comments below.

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