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#200970 09-14-2021 07:20 AM
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Hi,
My name is Sarah, I am 24 years old. I had stage 3 tongue cancer, with no risk factors and within a month I was diagnosed with cancer and had surgery. I just started my treatment and just got home from the hospital but I am finding it very hard to look in the mirror. I don't look like me. I have a tracheostomy, scarring encircling the entire front of my neck, and a large wound on my arm and leg. My tongue and neck are still swollen and I can't talk. My saliva glands are almost too productive, so I have almost a constant drool since I can't close my mouth. How long does it take for the swelling to go down? Are there any tips someone could give me? I know it is temporary, but it is still hard in the present, not feeling like me. I just want to be able to recognize myself.
Thanks,
Sarah

Joined: Sep 2019
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Hello sarah,welcome to our support group I felt same way try to talk to your Dr if they can accommodate suction machine my surgeon order me temporarily one I used for a month and after radiation my saliva dried up and I have permanent dry mouth,you didn't mention if you gonna have radiation hang in there things will get better and your speech will come back good luck.

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Paan #200972 09-14-2021 06:43 PM
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I will start radiation in the next 2 weeks and then do chemo after that. I appreciate all the advise!

Thanks,
Sarah

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Sarah

I am so sorry you are going through this. It is a major challenge and so public when it includes our facial features/speaking/eating. These things are social centerpieces that people focus on naturally daily in our lives. I had a similar process last year and similar challenges. It did take a lot longer than I was expecting to be able to speak and eat. The swelling in my tongue lasted for months. It improved slightly every week but I remember wondering if it would ever come down completely. It does. The hole in my neck was a mess for about 5-6 weeks. My scars are still visible but I sometimes have to point them out to people when I tell my story. Speech and eating are still effected but much better now. People that didn't know me before hear a slight lisp but I rarely have to repeat myself anymore. I eat really slowly and smaller pieces and nothing spicy. No alcohol and really only coffee (not too hot) and water to drink. I really don't miss alcohol except a nice glass of wine with my wife on a special occasion.

Radiation and Chemo will come with their own challenges. I only had radiation. Radiation will jack up your taste buds and burn your mouth and neck. I was down to a very short and simple list of foods to keep my calorie intake at minimum of 2,000 per day. Most things tasted terrible. About 2-3 weeks after my last treatment, flavors started to improve. But, as I am sure you discussed with your medical team, your chances of beating cancer improve significantly with these steps.

Know you are not alone and please keep reaching out to this group for support and help. Wishing you a full recovery and strength for your upcoming treatments.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Nels #200985 09-30-2021 11:00 AM
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Hi Sarah-

Sending you good vibes. Sorry you are experiencing this but you've come to the right place. There are many stories here. The biggest and scariest part for me was not knowing what was happening in my body and when it would end. I wrote about part of my experience for my local paper:

https://eastbayexpress.com/the-killer-inside-me-2-1/

I was spared surgery but underwent a pretty massive dose of chemo-radiation. Anyway, hope it helps. You don't have to go it alone.

BK

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I know exactly how you are feeling! I had over 3/4 of my tongue removed October 2020. Along with neck dissection to remove lymph nodes. My feeding tube is still in. I'm not using it much now at all and may have it removed at the end of this month. 3 months after getting home I began wearing a Lymphadema Suit to control the lymphatic swelling in my neck. It has worked,out great! Also, I put vitamin E oil on my neck scar, forearm and leg scars. I can't notice my leg scar now. My arm and neck scars are lightening up! My flap has a mind of its own. Feels swollen at times, burns like crazy at times, extreme salty saliva at times too. I use Lidocain gel on my flap using a cotton swab, Lyrica for nerve pain. You must get on both if those. I researched on my own to do excercises for the flap. Get it moving and stretch it and stretch your mouth/smiles! Now my speech I hate it! Embarrased by it. But I sing to with my Alexa loud in the shower!
Lets hang in there, ❤ together.

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I’d be curious to hear what exercises you are doing for your flap area. Mine is fibrotic and firm with no feeling in it. My voice is trashed and even with sone speech therapy the nerve damage from my radiation treatments many years after those treatments, started to trash it all. Swallowing and speech went at about the same time. But if I could loosen up my neck some it might help.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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