Hello my preferred name is Mink. I'm 24 years old and on January 31st 2020 I was diagnosed with tongue cancer, Squamous Cell Carcinoma (HCC). I don't drink or smoke. Heres my little story.
So in August of 2019 I was starting a new semester of college, I was fairly stressed out about my vocal class (I'm a classically trained singer unfortunately)
and I had some sleep paralysis problems and ended up biting the heck out of the far back of the right side of my tongue. I was able to continue my vocal class but my tongue started getting worse as my teeth rubbed against the huge chomp in my tongue and would bleed constantly and finally in late October 2019 I went to my local urgent care where I was given pain medication and told to come back if it didnt heal. Well it never did heal so I went back a month later and received a referral to see an oral specialist in San Francisco which is 2 hours away from me.
I had numerous problems trying to get in as my insurance had the wrong fax number for UCSF's so my referral wasn't going through.
Fast forward to the actual appointment where I was seen by the oral medicine department instead of the surgeon in late January. I was seen and had the head of the department take a look at my tongue and was immediately told that there was probably a tumor right below my big bite on my tongue. I was scared out my wits, and surrounded by 6 or so other people in this small room and started to have a panic attack, not fun. The head of the department quickly shooed out most of the other assistants who kept taking a peek at me out of the room after that and had a biopsy done. Another doctor tried to console me and say that he thought it was just trauma from the bite, but the head of the department was fairly certain it was a tumor. I got my results quickly over the weekend and recieved a call the following monday with the bad news of it being cancer.
Soon after I was sent to see a surgeon at UCSF Mission Bay, unfortunately my cancer grew a growth further back of my throat so I was having the worst time swallowing anything. I was told by my surgeon that I would be having a large part of my tongue removed along with my right tonsil and some lymph nodes as a precaution and reconstructive surgery taking part of my arm to remake my tongue (thankfully my taste is still intact). As a singer this devastated me, I never really allowed myself to cry much through most of this to be honest so I just took all this news with a straight face and accepted since there really isnt much else I can do, also I hate crying in front of others so my pride is the problem.
My surgery came very quickly giving me only a week and half to take care of taking an excused withdrawal from school and fitting in all the other necessary appointments needed for the surgery. My surgery was March 9th and I was weirdly calm about it. It was a 12 hour surgery, it all went well they ended up taking 72 lymph nodes all tested negative for any cancer. I was incredibly swollen and was quite disgusted with how I looked when I was finally conscious. My time in the hospital was incredibly lonely and I thought I was going crazy because of the sudden COVID19 lockdown in San Francisco and the hospitals banned all visitors a couple days after I was transferred out of ICU. At first I had the nose tube for my feedings but 2 days before I was discharged on the 22nd I got a PEG tube inserted and boy I was so happy to have that thing out of my nose. I was so happy to be discharged after being stuck in there for 2 weeks, I was so tired of being hooked to IVS and being stabbed for labs at 5am everyday, they could only take blood from one arm so I was covered in bruises and I became an incredibly hard stick and had to have my IVS redone several times. I was just so relieved to be home (I didn't mention it but I come from a complicated situation so my only support is my bestfriends who are my roommates who really saved my life on multiple occasions)
So now I am currently healing up, I just had my simulation done today and I start 33 rounds of radiation and 3 things of chemotherapy, UCSF is incredibly understanding to low income people like myself so they got me a hotel to stay at for the 6 weeks I'll be in San Francisco starting on the 23rd when my treatment begins. I'm honestly terrified and I'm not sure how I'm going to do or how I'm coping. If anyone has any tips for what to brace myself for or just any advice for getting through all that would be greatly appreciated. Sorry this has been a really long post 😅, I have ADHD and tend to ramble a bit.
Hello @Minkyuu and welcome!
Thank you for sharing your story so far with us!
I worked in San Francisco for a long time, it's one of my favourite cities and I am rather partial to the Giants ⚾ I am glad you've been able to find accommodation for your treatment, that must have been a relief to you.
I know your treatment has already started, how have you been finding it?
We have a great podcast you may like to listen to on managing fear.
Hoping all is going well,
Online Community Manager
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