Welcome to OCF, Pam! Im sure we can help you and your significant other with tons of tips and info plus some excellent support to help you both. Beings a caregiver isnt easy!!! Make sure you take care of yourself and take a break once in a while.
Your significant other has been thru a major surgery which will take time to bounce back from. The kind of surgery you described must have been a very long, intricate process. Im sure it wasnt easy for you to patiently wait for the surgery to be finished. You may not notice it but your significant other has lots of swelling which takes time to go down. It can be months before its gone. For now try to follow everything the doc recommends... take a deep breath! This is likely to be a long road for you both. Dont worry, we will be here to help you thru it.
The best thing for you both is to discuss everything with the doctor who is in charge of your patients care. Your questions are NOT simple black and white questions. Answering them isnt easy at all. You will see this over and over here ... everybodys different
no 2 patients will ever have the exact same experiences or react the exact same way to medications, etc! One may sail right thru everything and another could struggle right from day 1 even when these patients have the exact same diagnosis and on paper as so similar they appear to be interchangeable. What works for one may or may not be appropriate for another patient. This goes for how patients respond to medications, surgeries, recovery... pretty much everything. If you havent brought a dry erase board to help your significant other communicate with hospital staff, please consider picking one up.
Swallowing muscles when not used can quickly forget how to function together. This may be whats behind the lack of details provided? Im sorry but as a group of oral cancer (OC) patients and caregivers, we arent qualified to second guess the reasoning behind why the doctors have done what they have done or guess what their motives were for doing anything. Its best when the doc or medical team are there and talking to you and your significant other to ask them all your questions. If you arent understanding something, remember they work for both of you so ask for clarification until you do understand everything. So much better to get their expert input at the time when they are face to face and can examine the patient if you have concerns about something. Im sure they have many other patients to tend to but remember.... they work for you both so dont hesitate to pick their brains while you have the chance. Before swallowing is attempted a barium swallow test may be given to ensure all the swallowing muscles are functioning normally. Prior to any exercising, especially only a couple days after such a major surgery wait to get the OK from the medical team. Starting exercises now could do significant damage to the newly constructed mouth and cause a medical emergency if something would rip open.
Its not easy but do your best from getting too far ahead of yourself. Try to focus on what is within your control and avoid negative thinking. Over the past 12+ years after my original oral cancer (OC) diagnosis, Ive learned an incredible amount of important medical info and feel like Im now a completely different person living a very different life than when I was first told I had cancer. Looks are NOT everything, neither is speech or the ability to eat. Sure those things seem like they're some of the most important things right now but if every one of those 3 things changed or were gone your significant other still will be the same person regardless of their looks or abilities to eat and talk. All those things seem to be of the utmost importance but surviving is the real issue above anything else. lts not easy to see the big picture all the time especially when being overloaded with learning all the new medical jargon and more about the recent major surgery. Survival and eliminating the cancer are the goals with everything else being secondary. I wasnt able to see this until the day I first walked into the bathroom about a month after I walked into the hospital for my very early surgery. When I teetered my way to the bathroom on my very wobbly legs with the equilibrium similar to being on a small boat in a big storm, I hadnt yet been told what Id been thru so I had no idea it was a month later. Not recognizing yourself in the mirror is shocking!!! Even though I didnt look very good, I survived (which was the real goal) and nothing in the world can take away the person I am inside. The more you read both the posts here and the main OCF site, the better you will understand just how serious OC can be. This will make you a strong advocate for your patient and in time bring the closest couples together with a stronger bond ever.
Hang in there, its a long road but you both sound like you are on the right track
. Plus now you have us to help you both get thru everything.