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Nels #201402 06-20-2022 06:56 AM
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Boland Offline OP
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Hi Nels,
I you're keeping well. I just read the "Mountain Lion in Your Fridge" article. It was excellent. It made me laugh and cry. I'm currently waiting for the surgeon who performed the excision to explain the results to me as I didn't feel the doctor I saw last did a particularly great job. I'm wondering too if your tongue ever feels normal again after this kind of surgery. What has your experience been after excisions? The lesion they removed was on the right underside of my tongue, far back near my throat. The area still feels weird. Sometimes I notice a dull ache there by the end of the day. Maybe talking and eating is irritating it. I'm trying to put the whole thing out of my mind but the sensation/ache is a constant reminder.
Update: I just received this email from the Dental Hospital regarding my request to discuss the results with the surgeon:
"In respect of discussing your results with Dr Pierce, we note you have an appointment for review in the Dysplasia clinic on 20 October 2022. If you are seeking an earlier appointment we regret there is no earlier availability. However, if you have concerns, we would recommend that you set out your concerns and you can send these via email to [email protected] and mark for the attention of Dr Pierce and this will be forwarded onto him for consideration, alternatively, if your own dental / medical practitioners have any concerns he or she can take a similar approach. "
I'm not terribly impressed with this response. What do you think?

Last edited by Boland; 06-20-2022 08:07 AM. Reason: Update
Boland #201406 06-20-2022 12:14 PM
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Boland,

Glad you enjoyed that read. I still enjoy reading it and probably have read it a dozen times now.

Yes, my life has been full speed for probably about 12-18 months. Full speed to me means doing all the same stuff I enjoyed before my positive biopsy. So, running, surfing, working full time, etc. Food (nothing spicier than about a 2 or 3 on a 0-10 scale) and dental (saliva production is better but still quite low) is about the only current challenge. Both keep improving and it's not holding me back from enjoying food, eating out, etc. Alcohol is the only thing nearly 100% gone from my life which is OK with me. I was only a social drinker anyway. I do miss the occasional glass of wine with my wife on special occasions. Of all weird things, Guinness beer tastes fairly normal. So, I save that for special occasions.

My tongue definitely feels different. Not painful, but it tingles depending on how I am articulating the scar tissue. And, I have a slight lisp in my speech now. But, everyone can understand me. It is much harder to converse during a meal. I never realized how much we speak while food is still in our mouths even though we are all taught not to do that. I have to truly clear nearly 100% of food out of my mouth to speak clearly. And, on difficult words, I take a pause before saying it. But, I have yet to meet the word I can not work out and communicate clearly enough for a stranger to understand. I was surprised how much of my social life and conversations outside of work included food. My neck is tight on the side they removed my nodes but it works well enough to see blind spots driving, surf, bike, etc.

I would push all your thoughts and concerns into their portal. It helps document it all and then you have responses in writing. And, then you can share that with any other doctors for second opinions and further evaluation/treatment.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Boland #201411 06-21-2022 10:38 AM
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Hey Boland (D&C); I will try not to "Ramble On" here in my fellow Led Zeppelin fan's thread. Man, it's ok. I have battled tongue cancer 3 times, and am in the middle of my most difficult fight yet. I was 44, never smoked or chewed a day in my life, and the oral surgeon tells me that I "squamous cell carcinoma" at a follow-up appointment after removing a growth from the underside of my tongue. He was so sure it was a simple papilloma when he removed it, he was almost apologetic telling me of the biopsy results, and couldn't even say the word 'cancer.'

I blogged, and have a decent support group in my wife and family, which helped, but the biggest thing to me was focusing my actions on the things I can control, and doing my best to keep a positive attitude. Now, that's certainly not to say I am a Pollyanna or anything, and that I haven't had dark days, but focus on what you can do to help yourself.

Last edited by Frosty4191; 06-21-2022 10:39 AM.

-SqCCA Feb 2016, partial glossectomy
-SqCCA Jan 2020, partial glossectomy
-SqCCA Oct 2021, hemi-glossectomy, lymphectomy? (lymph nodes left neck removed)
Nels #201416 06-23-2022 06:54 AM
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Boland Offline OP
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Thank you Nels,
I know what you mean about trying to eat and speak. During meal times I have a habit of correcting my boys' table manners. This comes from having worked as an au pair years ago in France. I was so impressed by how well French children behaved at the table that I decided if I ever had children of my own I would make sure they knew how to behave during meal times. I have to be very careful now that I've fully swallowed my food so as not to bite my tongue when I'm speaking to them at the table. I'm steering clear of spicy foods too like you mentioned. I'm not a Guinness drinker but I've had small amounts of wine since the operation.
At the moment I'm run down and generally unwell from stress and lack of sleep since the diagnosis. As soon as I can though I want to get back to living life fully again. It's great to know that after all you've been through you are thriving and active. I want to be that way too.

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Boland Offline OP
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Thank you Frosty,
It's nice to hear from another Zeppelin fan. I was a teenager during the Grunge era and was big into Pearl Jam, but then my older brother came home with the Houses of the Holy album and it absolutely blew me away. I love Robert Plant's collaboration with Alison Krauss too. I'm so sorry to hear you're battling this thing again. I was never a Metallica fan, but listening "Broken, Beat and Scarred" helps me to keep fighting. Thanks again for getting in touch. Keep fighting. I will too.

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