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*March 2024* By Juanita Segura

Recently, I’ve been asked who my rock is and how have they helped me. Many might automatically think it’s my husband, children, or family. But honestly, it’s not; it’s my lung cancer community, my tribe!

Now, for many, it just might be their spouse or children or family members. But no one understands us better than our lung cancer community.

I’m not saying that my husband, children, and family members aren’t. They are there to help me as much as they can but to truly understand what I’m going through physically, emotionally, and mentally.

Navigating medication side effects

When I was switched from Zycadia to Alecensa, the side effects from Alecensa were brutal, especially the muscle aches. I remember my husband telling me (jokingly, according to him) “You’re just getting old.”

It used to infuriate me because he didn’t understand the side effects and what it was doing to me. I would jump on my ALK-positive group, and they all understood me and tried to give me advice on how to deal with it or what supplements could help.

When they reduced my dosage, the muscle aches got better, but they were still there. So now I’m limited in what I can do. I noticed he gets upset because I can’t clean the house like I used to.

I remember for Thanksgiving, I overdid it by cooking, and I was in so much pain afterward, so I refused to cook. If I’m going out, I will wash, blow dry, straighten out my hair the day before, and do my makeup the day of because getting ready all at once is so painful.

Finding support in the lung cancer community

When I went through chemo, I was told there was a possibility I would lose some hearing, and that did happen. So, when my kids talk to me, and I don’t hear them and make them repeat themselves, they get annoyed. I tell them I don’t care if they get annoyed, so please speak up.

Now I can take this to my ALK Positive group (Alkies Unlimited) and other lung cancer groups and vent, scream, and share with them all of this and then some, and they all understand. This is why I say my lung cancer community is my rock. They are always there for me with advice, support, suggestions, and love, and they’ll even make me laugh when I’m upset. Read more.