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Terrible swelling on new tongue flap, one year later
r042wal
5 Posts

I have quite a deflating issue as my expectations for my recovery one year after my surgery were much higher. I had a full glossectomy April 2021. Around October 2021 my flap would start to swell after eating, talking or doing any type of minor excertion.

The swelling would compound during the day so that by the evening, it was like having a tennis ball in my mouth. I sought the opinion of the second surgeon that operated on me and although he had no answers, he thought it might be lymph buildup since the lymph nodes were removed from my neck. I wear a compression mask at night and the lymphodema in my neck and under my chin is under control. The swelling go down over night.

The surgeon said if any changes are going to take place, it is within the first 12 months. Apparently the clock starts counting after my chemo and radiation thereapy I had last June and July, not my April surgery date. There are surgical revision available to me this fall but in the mean time, losing my ability to talk properly really takes it toll. There has been so much loss since my ordeal started and it is all manageable and I remain optimistic - except for the ability to communicate properly. So far, I have not found anyone on any of the cancer forums who have had a problem like mine and that is equally discouraging. Lots of people with similar cancers but no one that has been able to relate specifically to my issue and that's unsettling.

Thanks for hearing me out.

4 Replies

Hello @r042wal

Sorry to hear you are still struggling with the swelling after surgery. I thought I would tag @Karmi123 @Marilyn03 and @law1 to see if they have any insight to share with you.

Lianne

supersu
1295 Posts

@r042wal

good morning!

what a story you have. I am so inspired that you remain optimistic in the face of your losses and discouragement. thank you so much for sharing with us.

so happy that you have found this virtual community; while we may not have the same diagnosis or ongoing issues as you--we can certainly offer support and compassion from a place of mutual understanding.

covid and cancer has isolated many of us…I can totally understand that your speech difficulties adds another layer onto that, but let us support you here virtually.
that is certainly 1 thing covid has given us…so many opportunities to build friendships.

you write so beautifully – there is a fellow here in Alberta affiliated with WellSpring who makes the most impactful short videos about folks' cancer experience.
your story and experiences beg to be made into a digital story!
he has a great YouTube channel - check out some of the other productions.


also I noticed that the Information Specialists of the Canadian Cancer Society can communicate via email: here is the information for that.


let us know how things move along. we are here for you.

cheers
su

#tonguecancer #flapswelling #communication #virtualbuddies #cancerconnectioncommunity #realtalk #wellspring #youtube

law1
731 Posts

Hi, and thanks for keeping us posted, @r042wal . It sure seems like you are in a tough bind yet so optimistic and hopeful for the control of the lymphedema, swelling, speech challenges and general hindrances of your tongue and mouth. I am sorry that you are going through all of this, and although I did have radiation on my head and neck to combat my basal tongue cancer, I have far fewer adjustment challenges. I am glad that @Lianne_Moderator tagged me, as you are going through a heck of a nasty and challenging recovery.

Have you been seen by a speech pathologist? S/he can work with you to maintain more understandable speech when you converse….or, perhaps limit the length of your conversations for a while. I was lisping and not able to form several letters, both of which affect one's feeling of success. My biggest disappointment still continues to be my inability to whistle when hailing a taxi!! Usually, your Cancer Centre will have such a speech pathologist/therapist on staff. I have heard that tongue flaps after a complete glossectomy do take longer than is optimal for healing….if your surgeons and oncologists seem to misunderstand your predicament, you may want to phone the Toll-Free Cancer Helpline 1-888-939-3333. I had to phone on several occasions as I was not able to speak easily, I was exhausted during a conversation, my swallowing and chewing were dismal….and it was a total depressing drag. Three years and counting…and I am far better at speaking and using my tongue….which seemed to shrink in length after the radiation fried the tumour.

You are toughing it out and I encourage you to keep reading and researching medical books and other materials pertaining to your surgery and recovery, both physical and emotional. If there is a medical library at your Cancer Centre check it out! And there are a few websites very helpful as well: Sloan-Kettering, Johns Hopkins University Hospital, this website, too!

Please keep your patience during recovery as you are being so challenged. Healing takes far longer and is often like a roller-coaster.

ginni
3 Posts
Turmeric is supposed to help manage inflammation of all types. Jumping on a sturdy indoor rebounder helps drain the lymph fluid. Acupuncture for managing pain and swelling.
Try supplementing with turmeric and do the bouncing.
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