had surgery monday. a total glossectomy,bilateral neck disection. only 1 bad node. the tumor was so big that radiation and chemo would not have treated it.
at this point my face and neck are very much swelled. i may be stuck with the "tempoary trach" forever. im not real happy about that.
on the plus side the drain tubes came out of my neck and leg. i can move around a little better now. maybe if i do more moving around it will help. really gotta get the swelling to go down over the weekend and then maybe the doctor will take out the trach.
Rebel,
I remember those days in the hospital. I had half my face removed due to the size of my tumor(s) and that was after they used radiation and chemo to shrink them. It sucked. I remember how good I felt just to be able to get out of the hospital. I have a video of how I looked shortly afterwards and the size of my face was amazing. I think total it took 9 or 10 months for the swelling to totally go down and my jaw had been wired shut for 4 months.
It does get better, it can be a long road my friend but remember you have these forums to vent to whenever you need. People here to relate to where you are as they've traveled a similar path.
Keep your chin and spirits up my friend, you'll get through this.
Eric
my loving thoughts and prayers are with you both.....praying to Aussie St Mary......xxxxx
Rebel, thinking of you and sending healing vibes. You're a champion!
d2
thanks guys. i look like ive been in combat but i dont feel like a hero. 1 more bag of antibiotic for the swelling and then im done with the ivs. im sure the swelling wont be gone that soon. though i hear i look better then i did a couple days ago.
i managed to get some of the blood out of hair. cant wait to jump into the shower.
You are me two months ago my friend. I have been there. Though mine is a hemiglossectomy. You will heal in time and I too hated the trache. Normally they will switch you to a fenestrated trache - hopefully they have, and then after they will remove it completely (I rejoiced let me tell you). I had one node involved as well, and can I suggest that if they offer you chemo and rads take it. Just in case.
Best of luck... it's a long road, but you've travelled a fair bit already. Hugs and healing to you.
Continued prayers for you Reb. Hope you continue to heal more and more everyday.
Dave
hey guys.they let me out 20/4. minus the trach. woohoo.except for the hole in my throat and the swelling, inability to speak or eat im feeling much better. dont think i could stand another night in the hospital. i havent made the appoint with the ent yet about getting the staples out but i do have one with the MO. monday.im not sure radiation is even an option because that was part of the treatment for the testicular cancer i had back in 91.
I believe if it's a different part of he body they can radiate it. Good luck!
Yes- they can radiate another area of your body. It will probably be reccomended to get any stray submicroscopic cancer cells. Yay! Glad you got out of there! I felt the same way about the hospital. Nothing better than sleeping in your own bed. Wishing you a very successful recovery! Kate
Hang in there. Radiation after surgery is very common because it does a "mop-up". A lot will depend on your pathology report post surgery on the tumor they took out. You will want to know if there is any evidence of perineural invasion, or if the tumor was HPV positive and sometimes the doctors don't say at first. I just asked for and got a copy of the pathology report so I could read it myself
I can't imagine any issue with radiation to your throat after radiation to your testicles. Heck I had radiation again on the exact same throat area even after the "maximum"
It's awful at first after the surgery but it does get better.
Keep the faith
Charm
a total glossectomy,? I have not ever heard of that before...not saying it's never been done, but I just haven't heard of that.
What are they going to try to do something to maybe allow you to eat or talk again?
I am glad you are out and on ur journey at home! I hope things get easier for you in the near future!
I believe there are a few people here who've had total glossectomies, related to the location of the tumor or size. They do rebuild it - and I think eventually there is reasoable function, but I am sure they will pop into explain.
i hope they pop in to explain. im not having much luck with speech and none swallowing. which is a problem. im not gaining weight on ensure. and i still have radiation and chemo to look forward to.
IMO Ensure (250 calories a can) will not cut it. Try Ensure Plus (350 calories a can) or VHC (560 calories a can)by Carnation. After my surgery, they gave me a prescription for Jevity 1.5 (355 calories a can)so insurance would cover it. However Jevity can only be tolerated with a feeding tube since it's so bad, it makes the chalky VHC taste like the nectar of the gods. It's terrible when you can not speak or swallow.
hang in there.
Charm
Congrats and nothing but the best your way. I think we all have had the same thoughts as you concerning the what ifs. You seem to have a great outlook and the gumption to Go Man Go. To me the best part after getting out of the Hospital those times was standing in the shower the 1st time. LOL, even if it was like washing a strangers body.
my mistake. im using ensure plus but its not doing it.
i need info on how to make swallowing work.
The best way to make "swallowing work" is by working with a Speech Language Pathologist (SLP). Despite their "title", they are also trained in swallowing exercises like these
swallowing exercises There is an excellent diagnostic test to identify the nature and seriousness of your swallowing disorder : MBS
While your doctor has to order a Modified Barium Swallow (MBS)test, it's the SLP who usually administers it in conjunction with a radiology tech.
There is also VitalStim, an electrical "shock" treatment that has helped some posters.
My insurance covered all of the above for two years, then everyone said that with no improvement after two years, it was unlikely to work for me. I want to stress that this is NOT the usual outcome. Get an SLP appoinment as soon as you can - the doctor just writes dysphagia treatment/swallowing therapy on a prescription pad so insurance covers it.
Charm
i saw a slp yesterday. had a mbs thursday. the liquid would get down to where it was supposed to but i could not open the passage to the esophagus for it to go down. it just sat there. although i was trying it wouldnt work. im scheduled to see the slp twice a week. she has never worked with anyone with my problem
If your SLP has never worked with someone with your problem then you need her to refer you to an SLP who does have the experience! I cannot urge you enough to see a SLP with a lot of experience - it can make the difference between eating again and never eating again. What you describe is actually quite common - the upper espohagal sphincter sounds like it isn't opening to allow food and fluid to enter the esophagus - was there a referral to a GI MD made? They usually like to take a look at those things and assess for the need to dialate or stretch that sphincter.
Your surgery wasn't too long ago - it could all be related to residual swelling too. Swallowing is a complex process that we take for granted until we can't do it! Keep up the effort!!