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vnoel Offline OP
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Hi! Happy to have found this support group. My husband was diagnosed with SCC this past February after seeking treatment for what he thought was a cold sore on the underside of his tongue. In April, he had surgery to have the tumor removed, which included splitting his jaw and removing half his tongue and a section of lymph nodes from his neck. His tongue was reconstructed with a forearm flap, and he had a two week stay in the ICU. The surgery went well by the doctors accounts, and they were able to remove the tumor with clear margins, but added 33 RT and 3 rounds high dose chemo (cisplatin) because it was Stage IVb. The radiation/chemo treatments were incredibly difficult, in terms of nausea, vomiting and pain but with many meds and a supportive palliative team, he got through that. Now we are struggling with the aftermath. My husband stopped eating two weeks into the treatments, and hasn't swallowed anything but his own saliva since that time. He stopped speaking mid treatment too and still is unable to speak. Right now, nausea is under control, but struggling with a very shallow gag reflex, lots of spitting, and gagging which escalates to choking and sometimes vomiting, although the latter has lessoned in the last few weeks. All to say, now we are left wondering when life will ever feel normal again, and if what he is experiencing is typical. He had been seeing a SLP and will follow up later with one but overall the advice was always to keep swallowing and keep talking if he is able--but he's been unable to do that. Thanks so much in advance for your help and support.

Last edited by vnoel; 09-02-2021 09:51 AM. Reason: typos

Caregiver for my 34 yo husband, diagnosed with SCC of tongue in 2/21. Had glossectomy neck dissection, and tongue reconstruction with tracheostomy and feeding tube placed 4/13/21. Tumor diagnosed as Stage IVb, followed by 33 RT and 3 rounds high dose cisplatin concurrently. Last treatment was end of July '21. We are parents to two small children and appreciate the support.
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Hi Vnoel

I am so sorry for what you are going through. It is a long and difficult process. Everyone's path is different so jt's very hard to compare recovery paths. I went through a similar process last year but no chemo. I was frustrated with the slow recovery at nearly every step. But, I kept a journal, took pictures, videos, etc. I would reference them when frustrated and realize I had improved more than I thought.

I learned to judge my recovery in weeks and months rather than days. I am now over a year from surgery and radiation. I am living a full life less a few minors items. Minor items are no spices, no alcohol, and continuous dental care. But, we travel normal, I can speak, eat most things, exercise, work, etc.

Love, prayers, and support of many helped but on a personal level, the journal was powerful. I was surprised how much I wrote. Even today, I still go back and read some my old notes from surgery and radiation treatment.

Best wishes for a full recovery and keep in touch.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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vnoel Offline OP
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Hi Nels,
Thanks so much for taking the time to write--it really means a lot to us. Its funny you say to look at recovery in weeks and months, not days, because even as I write this a few weeks later we both feel like that post was light years away, and things feel much more hopeful this week. My husband went into his workplace for the first time yesterday, and even though he's still not speaking or eating by mouth, it felt good for him to reconnect in this way with the world. He hasn't been around anyone but our family and the medical staff for nearly 3 months. He has also had a few affirming sessions with an SLP who understands where he is and is giving him exercises to work on. They are challenging for him to do, and its taken some experimenting to figure out how to quell the gag reflex, but he already can open his mouth a little on his own, which he couldn't do two weeks ago. Its been affirming to read the stories on this forum, because we really had no sense of how significantly this would impact both our lives, and we were starting to wonder if he was a total outlier, but now its clear that his doctors, though very nice and competent with the treatments, never really gave us realistic expectations of the long term impact of this disease.
Thanks very much for your well wishes, and wishing the same back to you,
Tori


Caregiver for my 34 yo husband, diagnosed with SCC of tongue in 2/21. Had glossectomy neck dissection, and tongue reconstruction with tracheostomy and feeding tube placed 4/13/21. Tumor diagnosed as Stage IVb, followed by 33 RT and 3 rounds high dose cisplatin concurrently. Last treatment was end of July '21. We are parents to two small children and appreciate the support.
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Yeah!!! It warms my heart to hear you are improving. My first trip back to the office was also powerful. In fact, each piece of normal (what ever that means) was empowering. First night home, first walk around the block, trach hole finally closing up, slice of pizza, real shower, etc.


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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