my mom got diagnosed with tongue cancer and it is ripping me apart
I don’t even know where to start.
My mom was diagnosed with tongue cancer in June. Luckily, the tumor was small and not very advanced. About a month ago, she was admitted to the hospital for four days for various tests. She had an MRI, PET-CT, endoscopy, etc., and the good news was that the cancer hadn’t spread anywhere else in her body. The doctor said it didn’t even seem to have reached stage 1 yet although we won’t know for until later.
They decided to remove about 30% of her tongue and did a skin graft using tissue from her left thigh. They also removed the lymph nodes near her tongue as a precaution against metastasis. The first surgery happened last week.
The biopsy from the surgery comes out tomorrow, and that will give us more information about whether she needs chemotherapy, radiation, both, or neither.
Unfortunately, the blood vessels in her thigh were very weak and thin, so the skin graft didn’t go as well as they had hoped. About half of the graft has signs of blood circulation, while the other half doesn’t. She already had revision surgery two days after the initial surgery, and now they’re saying they need to remove the half of the skin graft that doesn’t have blood flow this Friday.
Despite everything, she’s doing pretty well. Today, they changed her tracheostomy tube to a smaller one that allows her to talk. I was so happy to hear her voice again after more than a week. It’s still very difficult to understand what she’s saying because of the swelling in her tongue, and her voice is extremely raspy, but just hearing her speak again made me so happy.
It was absolutely terrible hearing her have these horrible coughing fits multiple times a night, sometimes for hours, while she had the tracheostomy. And the sputum suctioning she needed almost every hour… Seeing her thrash around in pain and discomfort in the hospital bed when she had been perfectly healthy just a week before surgery… going on vacation, shopping with me, doing all the normal things she loved… has been incredibly difficult.
My dad and I have been taking turns caring for her at the hospital. What I never would have expected was how emotionally difficult it would be to take care of a family member in the hospital.
Honestly, the actual caregiving isn’t physically difficult for me. I’m in my fourth year of nursing school, so I’m used to taking care of patients, and luckily it’s summer break, so I can be there for her without having to worry about schoolwork.
But 99% of the hardship comes from the absolute soul-crushing heartbreak of seeing someone you love become almost unrecognizable in a hospital bed.
My mom is the most amazing and caring woman I have ever met, and I know she will always be the most amazing woman I ever meet. She is incredibly selfless, and she shows her love through acts of service and words of affirmation.
So not being able to hear her warm, familiar voice telling me she loves me has been gut-wrenching.
Until yesterday, we communicated by having her write on a whiteboard. Today, after they changed her tracheostomy tube, she was able to speak again. Her voice was very raspy and I could barely understand her, but after about five minutes of getting her voice back, the first thing she told me was:
“I’m very sorry that you have to go through this. I feel bad that you met me as a mom, because the last thing I want to do is put my daughter through something like this. I’m so sorry. While I’m in the hospital, don’t think about me and go out and live your life. Meet your friends, go get something tasty to eat, and just go back to your everyday routine. Don’t worry about me.”
She said it so sincerely and genuinely, with a surprisingly upbeat and happy tone, presumably because she was trying to cheer me up.
But it had the exact opposite effect.
I almost burst into tears right there, but I didn’t want her to see me crying. I secretly blinked the tears away while I was pushing her wheelchair. I know that seeing me cry would absolutely devastate her.
I’m home now because it’s my dad’s turn to take care of her.
And the house feels so quiet. My mom is the most talkative person I know. She never stops talking, and I’ve always loved that about her. But now, coming home without her, it feels like all the warmth has been sucked out of the house.
Even when I try to change my mood by going to a café, meeting friends, or going shopping, I can’t stop thinking about her. She’s literally all I think about all day.
Even when I’m with friends trying to feel better, I keep checking my phone in case the hospital or my dad calls me with some kind of emergency. The anxiety is killing me.
So, how do you fellow daughters (or sons) who were best friends with your moms deal with this kind of pain? I’m really lost right now.
And for those of you who have had a loved one diagnosed with tongue cancer and treated with surgery, how are they doing now? I would really appreciate hearing your experiences and stories.
I just want to know that there’s a light at the end of this tunnel.