Roger, I am glad to here your family is your rock. I prepared any questions my husband had about his surgery so he could focus on being brave,strong and eating lots.
The most impotant ofcourse is the Oncology Team's expertise and experience. I found that the nurses who helped us during our eleven day stay were so compasionate and open and that ment the world to us as we felt so vulnerable.
I asked the surgeon:
1:exactly what he was planning to take out and which part of my husband's body would be used for reconstruction.
2:how these changes would affect his every day life.
3:I also told him to be generous and make sure he did his best in taking out all he could to give my hubby clear margins. Related to this I asked if the team was using the special light that lets them see the cancer during the operation and also made sure they were doing the sectional biopsies during the operation so they knew when the skin was clear of cancer.
4: they will monitor the flap of new skin in your mouth every hour at first, then every two hours at the end of your stay. Do not rush getting out of the hospital as flap monitoring is very important. In our case they flap on my husband's left jaw was very vascular and strong. So much so that they brought in interns and other doctors to listen to the whoooushing pulse. When we where discharged his flap died within a week. You can keep a close eye yourself on your skin flap. Take photos to document its color. Touch it with a gloved hand to see that it bouces back up after you lift your finger. If your flap changes colour or consistency you must go back to the hospital ASAP, I read that they may be able to save them within 6 to 8 hours of beginning of death. In my husbands case, it turned palish white, stark white with a mushy unresponsive texture, then black and grey specs developed, it didn't even smell bad, just like stale breath. The whole thing just came out without any effort. Flap death happens rarely but I whished I would have been informed myself.
Ps: sometimes when the margin's are not clear they resect must be in cases where a resection is a quick simple resection of skin. It must depend on the complexity of the operation and weighing in all the extra time waiting for healing to be able to operate again and then waiting again for healing for radiation to start.
I asked the radiologist:
1: the type of equipment used for radiation.
What in my husband's case would be the common secondary effects he might get and how long these effects 'typically' last. This is a difficult question as there is a lot to consider such as your age and health, the location and size of treatment and your own body's responce to healing. The radiologist should be able to tell you what the main and secondary target areas are and the intensity of the treatment as well as what part of your anatomy they are hoping to spare. Eg: saliva glands
I saw on this forum that some patients get offered a drug to protect their saliva glad and that it works some of the time. I think it can make you nausious, this was not offered to my husband and I am not sure if it is part of regular protocol
Oh yes! Make sure to see a speach pathologist and a pysio therapist if you can before or right after treatment. They will asses how you swallow after surgery and befor radiation! My husband got a series of swallowing exersises and physio stretching exersises prior to radiation which has been proven to creat greater swalowing capacity in the long term.
That is all I can offer and my great respect for your straight forward positively encouraging courage!!on a personal note I got my husband to record how much he loved me on the recording system on my Iphone so I could listen to it if I needed to during his treatments.
Keep us posted and much love, Sophie