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#201543 10-11-2022 05:32 AM
Joined: Oct 2022
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ssb133 Offline OP
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Good morning! I had stage 3 Squamous Cell Carcinoma in my tongue. I had hemi-glossectomy surgery in May 2022 and finished radiation Aug 2022. I'm grateful to have come through it but having trouble accepting my new reality. I've never been a depressed person through my many trials in life but feeling overwhelmed trying to function with limited speech, lack of energy, weight loss, and my changed appearance from swelling and lymph edema. To make it worse, I was newly married and this has put a huge strain on my marriage. I really don't want to go on antidepressants and I tried a support group but seeing people so much worse off than me only made me fear my future worse (many of them started where I am now). How do you cope??????

ssb133 #201546 10-12-2022 06:18 AM
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Hello SSB133,

I am so sorry to hear you are going through all this. I am so glad you reached out here. This forum is a wonderful group of people who care and want to help. Cancer is scary and overwhelming at times. The aftermath surprised me. I went through surgery and radiation treatment for stage 4 SCC on my tongue over 2 years ago. It took many months for me to get all my activities back. My speech is not the same but I can speak and people can understand me. Eating is hard. I hadn't realized how much of our social world is revolves around eating and talking at the same time. This is probably my biggest continuous social challenge. No fun spitting food on your friend! I usually cover my mouth with a napkin if i really want to say something but i feel i still have some food that might come out.

Everyone's path and recovery is different. Good on you for trying a support group but also being honest with how it made you feel. I will suggest a few things that helped me and maybe one or two will help. For the first months, I devised a plan that included multiple phases - eating, exercise, sleep, time with loved ones, spiritual time, reading, mindfulness, medications, journaling, etc. I created a plan that laid it out daily. Sometimes I was too busy and only got to half of them, sometimes i got them all. I would score them and give myself a treat for high scores. Yoga - check, take meds - check, call a friend - check, walk a mile - check...

I have found strength in so many places and some i never counted on or saw coming. Maybe try a private therapist so you don't look around at others but can focus on yourself. Journaling was probably my most consistently useful tool. I did mostly writing but some video. It is precious to look back and read and watch where i was at. I had to be patient. I had to learn to judge my recovery - physical and emotional - in months not days. My family still has some aftermath. This experience plus a few other tough family situations really challenged us these last two years. We have all sought therapy and it has helped. But, also my faith has grown in a way i never saw coming.

My favorite short read - google "having cancer is like finding a lion in the fridge". Makes me laugh and cry nearly every time i read it.

Stay safe. Keep the faith. Let us know how you are doing.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
ssb133 #201547 10-13-2022 08:32 AM
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In my case, I immediately accepted the fact that I had cancer and that I knew nothing about how to help myself medically, so trusted the various professionals to do their jobs just as well as I can do my (in no way related whatsoever) job. Worrying was not going to do anything to improve things for me. Being angry about it didn't change the fact that it happened. I simply went to my surgery and let the people do their jobs and help me. I appreciate the efforts of all of these people involved - oncologists, imaging professionals, various surgeons & other support doctors, loads of nurses, learning students, cleaning and administration staff. All of those 100+ people were there to help me. And they did a great job - I'm still here 8+ years later and hoping to stick around for a lot longer.

Sure, I'm disfigured now. One side of my neck is smaller than the other because they scraped out a bunch of lymph nodes. Half of my original tongue is missing and replaced with a chunk of my forearm around my wrist. I have the extremely noticeable scar on my wrist where they removed that skin/muscle/arteries or whatever else went along with the flap. If I wear shorts, you can still make out the place where they scraped the skin off my thigh to fill in the hole in my forearm. Even 8 years later, I sometimes find a hair growing on the wrist portion of my fancy new tongue. When I try to do pushups, my wrist tires out really quickly but I can still do it at least. Went through the radiation and now my teeth are no longer straight & food gets stuck in there regularly. Sometimes if I take a bite of food that's just a bit too large I find it kind of hard to swallow and start to feel like I'm choking, so I have to be more careful than I was before cancer. But the motivation to get back as closely to my normal life as possible really helped my recovery. I'm still able to compete in my sports and go hiking like I used to before cancer. Post cancer, I've raced outrigger canoes in Hawaii and raced dragonboats in the Philippines, South Korea, Germany and many many times closer to home along the west coast of North America. Doing my fitness tests and keeping my spot on the team with people 20-30 years younger than me. I feel fortunate to still be in a position to do all of these things. Sucks that cancer picked me, but it happened and being mad about that does nothing to help me move forward. Go move forward.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
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