| 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 | At this time I would suggest eating all your favorite foods and then eating some more. Your eating function will be compromised for quite some time and you do not want to go into this having all kinds of cravings. If your surgery is prior to Thanksgiving, consider having an early Thanksgiving dinner so you wont feel so left out.
Ask for a Possey Muir valve trach so you will be able to speak easily after the surgery. Makes it much easier for you to wake up able to talk.
Sorry to hear about you losing your teeth! Ive lost mine due to radiation damage and unfortunately I am unable to get implants. That is a good possibility for you after all this is finished, having implants of beautiful perfect teeth.
Prepare yourself for a difficult time. Always better to over prepare than to wish you had done things while you could. If I were in your position and know what I know now, I would get ready to be out of commission for 4 or 5 months. I know that sounds like a very long time but the surgery is a big one and having radiation afterwards makes for long recovery period. Since I do not know your living situation, I dont know if you have a spouse or someone who can take care of your bills. Any bill (car insurance, electric, cable, mortgage, etc) that you can set up auto pay for do it. Write and sign checks and put them in envelopes along with a list of what gets paid when. You do not want to come out of the hospital with a big mess and no internet or tv.
Arrange to have several people to take turns being with you at the hospital. Set up a schedule with as many people as you can. Have everyone select a day and mark the calendar with who gets what day. Have a couple spare friends, people from your church, club or relatives who can fill in just in case someone has a problem and cant do their day. Any patient who is going to be in the hospital for any length of time needs to have people with them to advocate for them.
Make sure to set up a phone tree with a list of everyone you want to have notified. Put 2 people in charge of notifying friends and relatives. Have the person closest to you call these 2 people and they can then go down their lists. Make sure you write down every single persons name, number, address and who they are in case someone not familiar with everyone has to make some calls. Some people set up a caring bridge page so everyone can be notified just by checking out their webpage. Dont forget to inform people about OCF so they can come here if you have a problem and need advice. Its a huge surgery (usually 10+ hours) and could have all kinds of complications.
Take several close up photos of your face and neck from every single angle. Ask your doc who is pulling your teeth if you should have molds made now so they will have a record of what your mouth looked like for dentures or implants later. Its a good possibility you may need further reconstructive surgery down the road. It will take a full year of recovering before you can have any big reconstructions done. Looks arent everything and really are not that important but you should prepare yourself that you have a chance of coming out of this looking different than you do now. The most important thing right now is not how you look or talk, its getting rid of the cancer. This can be hard for many people to accept but if you come out of this without having cancer then it was a success.
Im sure there are many other things that you can do to prepare. I probably will come up with a few more items. If you dont have a will made, you may want to consider making one. I am not saying you wont get thru this but anyone facing a major surgery or a major illness really should be prepared.
Right now besides getting ready for surgery and being out of commission for a while, go out and live life. It would even be a good idea to do your Christmas shopping (if you celebrate that holiday). You can even buy and wrap any birthday presents and write out birthday cards now for anyone who has a birthday coming up in the next 4 or 5 months. I had 2 months before my mandibulectomy and I lived it up. I went out and made all kinds of memories with my children and had a great time. I was able to select the date so I chose 2 days after my sons birthday and we had a huge party. By keeping myself and my family active and having fun, it helped keep everyone from worrying so much. 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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