Im happy to hear you are taking such good care of your trach site! That tells me you are doing a great job at following your physicians orders.
Im wondering if you had a possey muir valve trach? That kind allows you to talk without touching it or doing anything (of course this is if you have the capability to speak). I had the possey muir valve trach while I was in for my big surgery in 2009. If you ever get another trach (hope not!), ask specifically for the possey muir valve trach. If your trach has not yet closed are you still starting rads with it not healed yet? With your wound being open still, and doing rads, it could affect the trach sites healing capability. All wounds, sores, cuts, etc always heal from the inside out. Im wondering if all the cleaning and pressing on the hole when you talk has any impact on how fast its closing? Another thought is a diet high in protein can help speed your healing ability. I would check everything I mentioned (cleaning the site, covering the hole often, high protein in your diet to help heal) with your doc before you start rads.
We can compare my trach closing to your but its not really an accurate comparison. I'll explain as best I can. I had radiation already when I had the trach so I was not able to heal like someone who didnt yet have rads. Back in 2009 when I had my trach, it was a very bad time for me. My memory to this day is still foggy regarding everything from a couple weeks before I went in until about the first 2 months after I was back home. I think being kept asleep for 3 weeks and the complications I went thru took their toll on me. I'd be surprised if this time ever was clear to me. As far as the trach question you asked me about goes. My trach was removed within the last couple days of my 2 month hospital stay. Im going to guess the trach closed about 4-6 weeks after I went home. I had all kinds of things going on when I was at home and the trach site was very minor to me compared to all the other ailments I had. I was on IV antibiotics 3x a day for 8 months due to not healing, I had 3 wounds the size of my entire hand where skin was taken to be used in other places. I had a skinny tunnel about the size of a coffee stirrer that was about 6" long that just would not close and kept getting infected. It went from a hole behind my ear to almost my nose. It took months of wound care specialists, visiting nurses and HBO to get that tunnel to finally close about a year after I went home from my extended "vacation". I dont know if the extra strong antibiotics had anything to do with helping the trach to close???? This was just what I experienced, please understand most patients will NOT go thru this like I did. You should have it much easier with your trach site closing very soon. I would still mention it to your oncologist .
I did some research and Im concerned about your dentist not making the fluoride trays. Maybe its something new but as far as I know trays were always done before so patients could start using them before they started rads. I dont know how this will work if you do it after you finish rads. What Im concerned about is the impact rads will have on your teeth. It can cause all kinds of problems like radiation caris and dry mouth which make it hard for your teeth to stay healthy without using the fluoride trays. Im thinking of how difficult it would be to make the trays after you had rads. Most OC patients have some painful mouth sores (mucositis) that can take 6 weeks or more to heal. I cant imagine how you or any other OC patient with mucositis is going to be able to get fluoride trays made. To me this seems like its impossible, I could never have gotten my molds made after rads. I probably focus on this because I lost my teeth to radiation damage and I had and used the flouride trays. Patients who dont have them can end up with much bigger dental problems down the road. For example, having a tooth pulled is easy for the general public but its a big deal for OC patients who had rads. I dont want to see you have trouble later. In case you werent told... OC patients quickly learn the importance of impeccable dental care from here on out for the rest of their lives. You'll have to brush and floss after every meal. A waterpik can be a huge help with keeping your mouth the cleanest possible. If you dont have one I suggest getting one and using it on its lowest setting with warm water and a little non-alcohol mouthwash. If your dentist didnt mention needing special mouth rinse, ask your oncologist if this is something you should have and they can write the prescription for it. I think my ENT is who got me started on the peridex prescription mouth rinse. Is your dentist is part of your treatment team at your facility or if they are someone you have been going to for years? Many dentists have never treated an OC patient so its not unusual for their to be a learning curve with how to best treat OC patients. Anyone who has OC should be seeing a special oncology dentist (very hard to find!) or a prostheodontist (slightly easier to find) who is a special dentist (years of extra training) who treats complicated cases (like OC patients).
The main OCF site, has hundreds of pages of info about all kinds of things OC patients who want to learn about their illness, treatments, recovery, etc will want to know. Im sorry but some of our pages are currently being worked on so they may not all be available right now. I added a few links from other sites that should be helpful to you too.
Main OCF site ---- Understanding OCDana Faber CCC --- Mouth care for cancer patientsNIH ----- Oral Complications of Cancer TreatmentNIH --- Oral Cancer, Treatment options depending where tumor is located, stage, etc...Best wishes with everything!!!
