Most of the people you see who have not posted in a very long time have simply gone back to their regular busy lives after recovering. Yes, quite a few good people have very sadly passed away. The hardest task of what I do with OCF is notifying our members when someone dies. Over the past few years Ive tried to add the date of passing for those who check in not on a regular basis. Ive been fortunate enough to have met a great number of our members who are oral cancer patients and caregivers. These people are always honored at our oral cancer awareness walks/runs and events with a special tree with ribbons of our deceased friends names on them. Its especially hard on the members who are close to those who pass away.
Reading bios of those who have passed away can be upsetting! It bothers me when I think back to all the friends who have died from OC and know there was absolutely not one thing I could have done to change their outcome. The very best thing you can do to help make this as easy as possible to handle mentally is to prioritize and focus on what is within your control. If you want to learn about your husbands illness, a very good place to start would be the Understanding section from the main OCF site. You will not be reading the personal stories and bios of the members who made the posts so it should be easier to get thru. Jot down questions you want to ask and after reading thru that area if your question has not been answered, then post it on the forum. By learning about OC, you will be a strong advocate for your husband. Try to focus on the positive and what is in your control. Do your best to avoid the negatives, the past and try staying busy doing positive proactive things. I used to clean out my closets whenever I started to dwell on things beyond my control that were negative. By physically getting up and going to do something productive helped me to avoid the ":what if" way of thinking.
Always remember, every person is an individual and will respond to things in their own unique ways which may or may not be similar to another patient who has a similar history. Comparing patients often is not an equal comparison. You can take 10 people who on paper appear identical... same age, sex, weight, tumor size, tumor location, stage, node involved, live in the same general area, same habits (smoking or not, drinking or not), etc. On paper you would think all of these people would pretty much go thru the same things with treatments, recovery, etc. But they dont! Every single one will report different side effects of varying degrees, some struggle from day 1 while a few lucky ones will bounce right back without any major issues. The point Im trying to make is comparing OC patients doesnt work! Every one is different and will respond in their own unique way. Ive seen many Stage IV patients (myself included) survive and go on to live very good, full lives while some Stage I patients have a difficult time and sadly even Stage 1 OC patients can pass away.
Only after going thru many tests will the official staging be done. Your husband will get scanned before the doc can review everything and give the Stage. Yes, its possible for Staging to change between the quick preliminary Staging and after all the tests are done and added into the mix. It could go either way. Its only a number! Try not to get too hung up on the Stage, treatments would likely be very similar regardless if it was Stage 2, 3 or 4. The dentist is only relaying what the pathology report said after testing the biopsy. OC is medical, not dental. It very rare to run into a dentist who removes tumors, does biopsies, etc. Im glad to see you have started making arrangements to get an ENT. Now that your husband has a cancer diagnosis you may want to start calling around to treatment centers to get the oncologist appointment scheduled. That is likely to take some time as well. Check with your insurance company if you would need referrals to make your appointments.
Heres the links in case you missed them from one of my earlier posts...
List of Cancer CentersUS News Best Hospitals ListMain OCF Site, Understanding section
