Its perfectly ok to vent! We understand what you are going thru. One of the best things about our site is the ability to have open, honest conversations without anyone knowing your identity. With OCF, you never have to worry about co-workers, neighbors or even family members learning about your medical condition from reading it on social media.

Its important to manage the pain most patients will have after such a major surgery. I found its best to make sure the pain is kept under control by asking the doc to prescribe 2 different pain meds. This way the patient can switch off and on, never having to wait until its the right time for their next dose.

The sooner you begin working with a speech pathologist the better. They will help you to learn how to best speak clearly after the surgery. You will have swelling that can take weeks to subside which can make you difficult to understand. It just takes practice and time before you are able to speak clearly. Theres also an Ipad app called "speak it" that can be your voice while you are adjusting after surgery. I had a close friend who used this for years, she found it very helpful especially for phone calls. Texting and dry erase boards can be helpful too.

I would suggest lining up helpers, as many as possible. You will want to have someone with you during your hospital stay and at least the first few weeks at home after the surgery. You may not be able to communicate very well immediately post surgery. You probably will also be hurting and pretty uncomfortable. Well meaning hospital staff will be in and out of your room, they will ask you questions expecting you to reply. Your speech may not be as understandable. By having someone there with you around the clock, they can be your voice. Also by lining up a few different people to stay with you, it will make it so much easier on everyone. Your caregivers can take a few hours to themselves while someone close to you takes a "shift" for a few hours.

Its not always easy for the mom to be the patient. Taking your little one out for a few hours can be a huge help when you first go home. Close friends and relatives can each pick a day of the week to be "the mom" and cook a homemade meal for your family. You may not be able to eat very well but your family still needs to have dinner. When cooking its not a big deal to make a few extra portions. That can get boxed up and dropped off at your home prior to dinner time. Your family can wash up the containers and place them on your porch for the cook to pick up the next day. Before surgery, give your oldest child jobs they are responsible for. This will help keep them busy and feeling useful. Theres a million little things that can be done to help you and your entire family. As you see, it takes a village...






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
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 smile