Hi Slim. So sorry to hear that you’re feeling a little lonely. There are plenty of people in here who you can talk to who have experienced the many forms and after effects of this scary disease. Maybe you can tell us a little about yourself? I know from your reply to my earlier post that you had a maxillectomy for polymorphous adenocarcinoma last year, but that the reconstruction of your jaw has had complications. Wishing you all the best, M
Like you I also had a maxillectomy. I had the operation in 2019 and radiotherapy that finished in 2020. It does take a while to get used to it as it is a big change to your life.
It can initially be a bit lonely as others don’t really understand the challenges involved. However I have found the support of this group invaluable and it has really helped me through.
Post any of your concerns on this forum and someone will reply as there is always someone out there who has had similar experiences and understand how you are feeling.
I too have had a maxillectomy in 2009, I understand the challenges it brings. I was restored with a dental obturator. I am sorry you have had complications with your reconstruction. If you need to ask any questions please post, as there will be someone here who may be able to help. Hopefully by joining in with this very friendly supportive group you will on the road to feeling less alone.
Hi SlimSimms Welcome to the club. There is some lovely people here that really helped me in my hour of need and will do the same for you I am sure. All the Best Regards Minmax
Hi ya, thank you for your kind words. I had an obturator for 11 months and on a soft diet with an NGT on a on and off basis. Have had that removed and now have a custom made titanium plate and x4 titanium implants. Still on a soft diet and desperate to put the 3stones of weight I’ve lost back on. Surgeon is waiting for some other custom made parts to arrive to commence plan c attempt on my jaw. I’m 52 years old and 1st time being ill and in recovery chemotherapy and radiotherapy not an option as it apparently doesn’t respond to my type of cancer. When it was removed my left orbital floor was reconstructed with titanium also.
Hi Slim sounds like you have been through some serious stuff. Ice creams will be your new friend . I have lost about 3 stone and happy , my old man who is 85 lost 3 stone but has since put it back on. You will get there so dont worry . All the Best Regards Minmax
Sounds like you have been through a lot. Fingers crossed for plan c so you can move forward. Maxillectomy can be challenging and restoration can take a while, it sure did for me. I have a piece of titanium plate similar to where you have this too. I never had any reconstruction for my upper jaw as I was restored with a dental obturator. Hopefully you will start to gain weight soon once things get a little easier for you eating wise and finish surgeries. The people on here have loads of advice on the soft food side that are loaded with calories. I lost around 22 pounds in weight in all but soon regained it when everything settled down.
If you have any questions don't be afraid to ask, the people here will always try to help.
Doesn't sound crazy at all SlimSimms. This is the roller coaster ride from hell at times and it can be a lonely place. You don't have to do this on your own though. There are lots of great people here who can support you
I also have an obturator and although it is great and works quite well in covering the hole in the roof of my mouth I have found some challenges with it. I thought it would be really helpful as the teeth attached should help me with eating but it does not work well for that but at least I have a pearly white smile. Unfortunately from a previous cancer op I lost the teeth on the opposite side of my lower jaw so now have limited teeth to use for eating.
It is now 18 months since finishing my treatment and I have resigned myself to a diet that is mainly puree. I manage to keep my weight up by drinking 1 or 2 Fortisips a day. It is a bit of an issue when I go out for meals with family and friends but have got it down to a fine art now and take my own food with me.
Have you seen a dietician as they may have suggestions on how to help gain your weight ?
Unfortunately it is not a case of puree everything and you’ll be fine. I have found that it comes down to texture, dryness of your mouth and taste and you have to find the right foods that fit into those categories. Once you find those foods things become easier. However I have had radiotherapy so that is an added complication that you have not had.
Do you have any tips around food Nicky and what has been your experience with eating?
Eating for me is okay now, as I can chew food with what teeth I have and have plenty of saliva, but it takes me a lot longer to eat than it use too. I don't eat in public as It is far too messy and I just don't like to explain the ins and outs to as why to the outside world. I am like you I find my obturator good for covering the hole and giving me the teeth I lost.
The early days of recovery were difficult due to all the problems recovering from surgery and radiotherapy. After I had my rig tube out my main diet was fortisip. I then started doing things like grating bread finely into my soup while it was heating up to soften the bread up. This added bulk to give me some carbs and fibre. There were all sorts of stuff I use to do get more calories in. I eventually started eating more foods by mashing individual foods first or cutting more solid foods into fine pieces so it got me onto a more solid diet. This helped me get back to chewing, despite my limitations . Little and often Is another good way too.
