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Joined: Dec 2011
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Joined: Dec 2011
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Hi,
My dad has had various forms of cancer since 98. I always describe him as a strong man who chooses to live with cancer. His latest cancer is larynx for which he was diagnosed 4 years ago. He was in remission but it returned 2 years ago and was receiving a sort of "cocktail" on a weekly basis. He has a paralysis on one side which has affected his ability to swallow. As a result he got an infection from food pooling in the throat area and dropped significant weight. Up until 2 months ago he was eating small portions of food but can no longer swallow. He now has a feeding tube that was inserted aprox. 2/3 weeks ago. Time is a blur at the moment. His ENT doctor told him today that it's unlikely he will never be able to eat regular foods. My concern is his mental state in getting over this possibilty. My dad told me that if he cant eat regular food what's the point of living. How do I respond? especially when I'm reading that people survive regularly with a feeding tube. It's possible he's tired but I want to be supportive of his decisions.

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Welcome to OCF. Oral cancer can lead many into depression. It is a very difficult cancer to go thru. Not saying any cancer is easy, but this one is especially brutal with it affecting such basic functions. The recovery can be a long drawn out process with improvements taking a long time to notice. Many people go on to live full lives with feeding tubes. Most people dont know that there are many children who have feeding tubes. I have eating difficulties and have had a feeding tube for most of the past 4+ years.

Not to downplay what your father is going thru but he is very fortunate to still be around after battling cancer several times. Its better to be living and have a feeding tube than not to need one and not be here.

I would suggest you try checking out the Oley Foundation. They help people with their feeding tubes. They also have an interesting newsletter they mail out every few months. Another service they offer is an exchange for needy people to connect with others who have different surplus supplies. Here is the link to them.

Oley Foundation link

Best wishes!

Last edited by ChristineB; 12-05-2011 11:51 PM. Reason: add link

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
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Tell your dad not to give up - it may or may not work but maybe he could try acupuncture - its been known to help before in some cases - depending on the cause of the swallowing issue. Christine is right depression can be par for the corse... he may need to see for himself there are others who live great lives with a tube. Maybe print off some posts from people here? Have a good day, and take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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You posted [quote]My dad told me that if he cant eat regular food what's the point of living. How do I respond? especially when I'm reading that people survive regularly with a feeding tube. It's possible he's tired but I want to be supportive of his decisions.[/quote]

Your father's feelings are par for the course. I'd be lying if I did not admit that the same thoughts haunted me at first. For me the answer was my wife and son. You sound like a wonderful caregiver and daughter but you are being too hard on yourself if you think your response is what is needed. Instead, it's your father's response to his own question that matters. From my point of view, thinking back on two years ago when after a year of swallowing exercises, physical therapy, even VitalStim electrical treatments, my SLP, ENT and prosthodontist all sadly concluded I would never swallow again, what I needed was people just to listen to me bitch and moan about it. Not to tell me to get over it, not to give me some pollyannaish platitudes, but just LISTEN and BE SYMPATHETIC. Don't deny just how hard it is to be excommunicated from the social aspects of eating.
I would suggest that you print out two Roger Ebert columns and let your dad read them
Nil by Mouth and
Way to a man's heart
He says it so much better than I can. Last but not least, if your dad is still wallowing in self pity in a few months, get him professional help. I'm 64, and have not had a bite of food or a sip of water since March 2009 but just a feeding tube yet my life is lots of fun and still an adventure. There is light at the end of the tunnel
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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