| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Scott. Welcome to OCF. Im so glad you have found this place to give you the guidance to get thru this. I do agree with the others about getting a second opinion and the UCSF is a highly recommended facility.
Ive been where you are and you are right, today must have been an awful day for you. Try to always take someone along to every appointment to help keep notes and ask questions. A second set of eyes and ears is always helpful. Too often we shut down when hearing bad news and thats where the other person will be helpful.
Try your best to eat like crazy now. Eating will become much more difficult down the road so eat everything you can now.
Trach's are not fun to have but you can do it. Same goes with the feeding tube, that is a whole saga in itself. Ask for a possey muir valve trach so you will be able to talk with it in.
Make sure you get to the dentist to get flouride trays to save your teeth. Also get your hearing tested as cisplatin can cause hearing loss. These are very very important things to do asap. If you have any trouble getting a quick appontment, tell the person that you are a cancer patient and your time is limited before your treatments begin. They will fit you in immediately.
There ae many people here who have had partial glossectomies. The people I have met in person, you would never ever even guess they had this done. Their speech is very good and they look healthy, yet they have been cancer patients.
Best of luck with everything! ChristineSCC 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 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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I left my heart (okay, tongue) in San Francisco
| scott lawrence | 08-25-2010 12:28 AM |
Re: I left my heart (okay, tongue) in San Francisco
| Charm2017 | 08-25-2010 12:37 AM |
Re: I left my heart (okay, tongue) in San Francisco
| Leslie B | 08-25-2010 01:01 AM |
Re: I left my heart (okay, tongue) in San Francisco
| misskate | 08-25-2010 01:09 AM |
Re: I left my heart (okay, tongue) in San Francisco
| Brian Hill | 08-25-2010 01:43 AM |
Re: I left my heart (okay, tongue) in San Francisco
| ChristineB | 08-25-2010 02:27 AM |
Re: I left my heart (okay, tongue) in San Francisco
| SusanW | 08-25-2010 04:10 AM |
Re: I left my heart (okay, tongue) in San Francisco
| davidcpa | 08-25-2010 12:07 PM |
Re: I left my heart (okay, tongue) in San Francisco
| scott lawrence | 08-25-2010 11:48 PM |
Re: I left my heart (okay, tongue) in San Francisco
| Brian Hill | 08-26-2010 04:40 AM |
Re: I left my heart (okay, tongue) in San Francisco
| davidcpa | 08-26-2010 12:04 PM |
Re: I left my heart (okay, tongue) in San Francisco
| wendys | 08-26-2010 12:40 PM |
Re: I left my heart (okay, tongue) in San Francisco
| Uptownsgirl | 08-27-2010 07:32 PM |
Re: I left my heart (okay, tongue) in San Francisco
| scott lawrence | 08-28-2010 04:21 PM |
Re: I left my heart (okay, tongue) in San Francisco
| ConnieFL | 08-28-2010 05:04 PM |
Re: I left my heart (okay, tongue) in San Francisco
| penners | 08-29-2010 04:04 AM |
Re: I left my heart (okay, tongue) in San Francisco
| ChristineB | 08-29-2010 04:18 AM |
Re: I left my heart (okay, tongue) in San Francisco
| ConnieFL | 08-29-2010 11:53 AM |
Re: I left my heart (okay, tongue) in San Francisco
| EmilyE | 08-29-2010 01:38 PM |
Re: I left my heart (okay, tongue) in San Francisco
| debandbill | 08-29-2010 04:09 PM |
Re: I left my heart (okay, tongue) in San Francisco
| misskate | 08-29-2010 05:41 PM |
Re: I left my heart (okay, tongue) in San Francisco
| davidcpa | 08-30-2010 12:10 PM |
Re: I left my heart (okay, tongue) in San Francisco
| Suess57 | 09-05-2010 01:48 AM |
UPDATED! I left my heart (okay, tongue) in SF
| scott lawrence | 09-27-2010 04:51 PM |
Re: UPDATED! I left my heart (okay, tongue) in SF
| ChristineB | 09-27-2010 05:33 PM |
Re: UPDATED! I left my heart (okay, tongue) in SF
| rossnz | 09-28-2010 04:19 AM |
Re: I left my heart (okay, tongue) in San Francisco
| bethers0808 | 09-07-2010 07:55 AM | |
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