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#200993 10-14-2021 05:51 AM
Joined: Oct 2021
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Amy109 Offline OP
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Joined: Oct 2021
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Hi,

My dad passed away from complications of oral mouth cancer in February 2021. In August 2021, he complained of ear pain and a sore on his tongue (he never complained about anything). So he went to two doctors and a dentist who gave him antibiotics and said it should clear up. After two months of more suffering he saw an ENT who didn’t like the look of the “sore” on his tongue and sent him for biopsy and petscan. He was diagnosed with Squamous Cell Carcinoma in October 2021. He was 73 years old and given two options surgery to remove part of his tongue and put skin from his forearm on tongue to rebuild it or radiation/chemo. He and my mom chose the radiation/chemo route. Doctors reassured him that the treatment would be difficult but that he would be grilling at his bbq in the summer. He was such a trooper throughout his treatment only to find out in January 2021 that he had a “lump” at the base of his tongue and in lymphnodes . He quickly went down hill with not being able to eat (feeding tube inserted) and he developed aspiration pneumonia and sepsis - he was taken by ambulance to the ER where they intubated him. With covid restrictions he had to go to the hospital by himself. After 4 days the doctors recommended that he come off the respirator as the cancer had spread. He died February 20 2021. He was in so much pain at the end of his life. Im still traumatized by this experience and pray that he is now at peace. I miss him more than anything and feel so lost at times. He was my rock. I know he would want me to take care of myself and be a great mom to his precious grandchildren. However, I'm struggling. I was thinking that maybe I could put my energy toward volunteer work regarding early signs of mouth cancer. Sorry for any typos. Writing from my phone smile


Amy "My Girl"
My dad was my world. I miss him everyday, and would love to volunteer and raise awareness of the early signs of mouth cancers.
Amy109 #200995 10-15-2021 07:34 AM
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Joined: Oct 2012
Posts: 1,274
Likes: 5
Amy,

I’m sorry you lost your Dad. My husband had base of tongue SCC and it started off as mouth ulcers which went away after he was given antibiotics. Fast forward six months, the ulcers came back and the ENT advised him to use bottled water for brushing his teeth while we were travelling in China. Another six months later, the ulcers came back and the ENT said the only time he had seen this happen during the time he had been practicing, it turned out to be cancer. We then went to an ENT with expertise in oral cancer and the cancer diagnosis was made. By then, it was Stage 4.

I think that’s why oral cancer is an insidious illness. Not all ENT’s have experience with it. Often when patients get their diagnosis, they are at the late stages. OCF strongly supports regular screening for oral cancer by dentists and hygienists. It resonates with me because of our experience.

When John was finally admitted to the Palliative Ward, he was given the “end of life” medication. The nurse told me the medication did not hasten death but would make the patient feel better and more comfortable as death approached. Maybe your dad had the same and there was not a lot of pain for him. Before he passed away, my husband and I decided he could not go down the route of “should have, would have”. At that point, that would not have been helpful. We put all our energy on coping with what was ahead of us. It’s tough to lose a family member and you are probably still in shock. Right after John died, I actually felt I had PTSD. It took me two years and some counselling to get over it. Can you find out if you could get bereavement counselling?

Wishing you all the very best.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Amy109 #200997 10-15-2021 06:09 PM
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I am so sorry for your loss Amy but know that you are not alone. My mother who was 71 at the time was diagnosed with stage 4 lung cancer in March of. 2003. She died in August of 2003. My sister and I both reacted differently to her death we both loved our mother very very much and this was a sudden death to us. My sister was retired at the time and was the one to take her to most appointments and saw the steady decline. As a nurse I have seen this many times (dying from Cancer) but when it's your Mom (or Dad) it hits home hard. My sister would tell me she could only remember my Mother looking sick (no hair, pain). Her death did affect me too, but my sister was diagnosed with PTSD and still suffers from it. Counseling and anti-anxiety medication helped us both. Counseling/medication may help you too. Best of luck, it will get better.


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