Noob with floor of mouth cancer
Comments
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Well ozyozymandible said:I finally have my PET scan
I finally have my PET scan scheduled for around two weeks before surgery date. I have gobs of telephone consults scheduled- a dietician, hospice/palliative(I think this is for feeding tube), anesthesiology guy, two follow ups? and a visit with the reconstructive surgeon.
Still helping my son prep for his move. Yesterday my daughter and I went and ripped carpet out of his future room after getting the bed moved out. He was working yesterday. He has little or no time off available at this time and he has always been right there for us whenever we need something and will likely be around a lot to help my daughter look after my husband if he needs help showering or something on a bad day. I want to let him know how much I appreciate that by giving back as much as possible before I go in and become worthless for a while.
Eating is getting more difficult. I was just about liquid only yesterday. I did an enormous breakfast shake with instant breakfast, cottage cheese, yogurt, marmalade, almond milk, cardamom, cinnamon, ground flaxseed, flaxseed oil and a banana. Had a doctored up glass of buttermilk(turmeric, cumin, salt, pepper and a hint of garlic and onion powder)in the afternoon and made broccoli cheddar creamy soup for dinner with grilled sandwiches for whoever could chew. Essiac tea before bedtime. So far no weight loss. I'm such a goof when I get cancer I gain weight? Can you believe it? Haha.
Anyway, the seeing eye kid(my daughter's nickname since the awful glaucoma attack)is up so it's time for me to get a cuppa and rustle up some brekkie for everybody. Can't decide between oatmeal, malt o meal, grits or scrambled eggs. Anything requiring even a hint of chewing will be ground up-I just can't take it anymore. Been using the old heated rice sock a bunch at night in down time the referred pain is getting to be a real nuisance.
If I don't stay really busy I might get really afraid when I think about the upcoming surgery. I know it's necessary and will probably relieve all this nerve pain I just can't stand to picture the actual procedure.
Talk to you all later.
That's the way it is. You start out finding you may have something going on and have an appointment or two or maybe a consult and the next thing is suddenly you have a hectic schedule of scans, consults, meetings, etc it gets to be a lot but just stay on top of it.
Besides, it looks like it will be easy for you as you are so busy all the time anyway. You must have loads of energy and that's great.
And please don't feel this way as you said in your statement--(before I go in and become worthless for a while) because you are not and no one is worthless as you are just going through a treatment where you can't just be yourself as always because this treatment is difficult, sometimes very difficult and as you said you are giving back as much as possible so you will be switching roles and they can give back and help you. Because they love you and you love them and that's what we do.
I am glad you are keeping busy and getting ready for the final preparations like the PET scan and other things and you can be comfortable that you are as prepared and ready as you'll ever be. I am also glad you are finding ways to get calories in no matter what.
Thanks for keeping us updated and I believe it helps you to write it out and keep focused and organized.
Best Wishes-Take Care-God Bless-Russ
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It does help me to stay busy
It does help me to stay busy and write things out. I write a lot of lists. I strive for order when met with chaos.
Today was another good day. My daughter and I helped my son put the carpet padding down. First we had tl remove a bunch of tacks from the floor and mop it real good with bleach to get smells out. The room used to be my dad's-he was disabled from having a stroke and incontinent ear the end and my mom had a dog and cats.
Tough day but I was able to eat real food today! One big piece of pizza cut up real small probably took me over an hour to eat but man it was good.
Wish us luck we gotta lay carpet over the padding tomorrow. It's a real Mickey Mouse deal because we're poor and using someone's reject padding that isn't too messed up but we had to piece a bunch of it and we were laying it over hard asbestos tile ghat crunched jp the staples in the staple gun.
We have it secured with Gorilla Tape. Hopefully it'll work. I heard the glue is really good... ; )
Thanks for reading.
See you guys tomorrow
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Carpet was successfully
Carpet was successfully installed. We struggled for hours to.do it but we did it. Too sleepy to think right now.
Nite nite.
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ozy,
I recall how tough temporary loss of taste was. It doesn't seem it would matter, but when you're chewing on something you can't taste ... you just don't want to swallow it!
My girlfriend made me highly nutritious smoothies, and no matter how challenging things got, I could always chug those ... no problem.
So, I got .. but never used my feeding tube.
Anyway, if food still tastes GOOD to you - EAT EAT EAT .. all of your favorites, and as much as you can!!
I'm so glad you have wonderful kids, that give you the support you need. I myself was very pleasantly surprised when I asked for help. I always had more volunteers for rides etc., than I needed!
You seem to be doing great - hang in there!
mg
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Thank you everyone. It
Thank you everyone. It really helps to hear from you all and read your stories. Thank you so much. My kids have been fantastic. Between them and you guys and reading forums I am far from panicking over this. So thankful not to be a puddle of wailing goo over this. After I finally get admitted for surgery I might start panicking and bawling like Lucy Ricardo but they will probably give me a sedative or something if I ask politely.?
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I'm in so much pain today.
I'm in so much pain today. Yesterday, I got a letter from the insurance company informing me they have approved 40 Norco in 15 days. The letter is dated 2/11. My Norco needs have changed drastically over the past several weeks.
In the good old days, B.C.(before cancer)1/2 a pill every once in a while would do. I am having to take three or four a day. The nerve pain still comes through so I take Gabapentin 3 or 4 times a day for that. Then there's the lidocaine. I used to just use that if I wanted to do some oral hygeine, maybe grab a bite to eat. Now I'm putting it in my ear and swishing a tiny dab of it in my mouth so many times a day I can't keep track. I have a new sensation the last couple of days like my right cheek has been burnt.
I know I need to talk to the doctor about this. I have to see the reconstructive surgeon tomorrow maybe I can ask him.
On the subject of reconstructive surgery... Do they try and make both sides of your face symmetrical or do they just worry about the cancer side only?
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I saw the reconstructive
I saw the reconstructive surgeon today. They will replace what they take from my mouth with a graft from the inside of my left arm. They will move thin flesh from my thigh up to my forearm.
My oncologist called to check on me and he's going to try and hook me up with more pain meds. I have also contacted the social worker about transportation. Big city driving is too hard on us. We didn't make much last year due to C19 so I can get two free Lyfts. I might save those for going to and coming home from the hospital.
I have a PET/CT scan tomorrow so I'm not eating anything but water, painkiller and scrambled eggs today. Tomorrow I'll do shakes and soup. Looking forward to that.
Other than that nothing to report.
I guess I'll check in later after the PET scan.
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I would like to learn from your experience with tongue cancer
This is the wifey.
I would like to know if somebody has been in the same position, and how they fared after all the sessions.
The reason is to understand how his recovery will go and how long the effects last after the end of ALL sessions!
Will he feel bad for a long time aferwards?
My goal is to take him on a small vacation in mid-May.
My favorite hubby Bucket has tongue cancer squamous cell carcinoma stage 3.
He is on radiation number 7 of 35. He is on chemo number 2 of 7.
End date radiation: April 5 End date chemo: March 30
I have survived cancer 6 times but never had tongue cancer and have only had chemo and surgeries.
I bought a Vitamix and have been making soups and protein drinks.
His ability to eat changes daily so it is hard to stay ahead of.
He has a power port for his chemo, blood draws, and hydration therapy.
Soooooo anybody have some experience with this very specific cancer?
I thank you in advance.
Kimmy Poo who love Bucket
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https://www.1in1440.co.uk
The above link is a blog written by a man in the UK who had surgery, chemo and radiation. (Of course every case is different!)
I read this blog and it really helped calm my nerves about it all. He hasn't posted in a few months but he seems to be doing very well. He even posted a gallery of progress pics.
Good luck in your journey.
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Just wanted to add a couple
Just wanted to add a couple of things that helped me today. Sometimes I get absolute death breath because of this and toothpaste can be very irritating.
I brushed my teeth with a few drops of tea tree oil. It is soothing, slightly analgesic and helps kill the death breath. It is also antifungal, antibacterial and antiseptic. Good stuff-just don't swallow it.
Another thing I did was drink a tiny bit of almond coconut milk. I've been sipping on it for a while. It was unsweetened and had only 1 carb per cup so it's safe to consume before a PET scan. It was very soothing on my mouth. Sometimes it hurts to drink water! I don't know how all of you radiotherapy folk manage. I can't imagine the pain you people are having.
Anyway just a couple things that worked for me.
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It is 11 o'clock in the PEE
It is 11 o'clock in the PEE EM(!)and my oncologist has sent me an e mail regarding the PET scan I just had today..
It has spread to some nearby lymph nodes-gee, that must be why the little soft area near my jaw and behind my chin hurts so much.
He said they were planning to take those out anyway and seemed to kind of downplay it but I've never had a doctor send me an e mail at 11 PM or AT ALL ever. Jeepers that can't be good.
Had a couple fair days painwise-was able to eat pretty good but got a real nasty wave of pain about the same time my doctor sent me that e mail. Some of it went away after brushing and rinsing with essential oil mouthwash. I am trying to chase away the last bit with a hot pack. Already took my pain meds for the night. Will pop one more Norco if I can't get rid of it. Felt like I ate Drano for a while.
I got a real sudden growth or worsening of tongue area. It feel like it has made a long crater or is going to disintegrate. It's just a tad bit alarming...
I'm afraid the stuff might be spreading to wherever this really bad pain is. I am just praying it's mostly referred pain. If it spreads to all these other places(especially so quickly)I'm probably a goner.
Nite nite.
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My doctor says this ulcer on
My doctor says this ulcer on the side of my tongue is huge. It's getting so hard to maintain oral hygeine and I don't want my mouth to get infected and prevent surgery.
My doctor is going to prescribe some liquid antibiotics for me.
I think maybe I came out fantastically in the Dr Lottery. I feel like this man is driven and will fight hard for me. So much gratitude right now because I've run into a few major stinkers over the years!
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ozy It Seems
You are handling your pain pretty well and carrying on each day. I am glad for you that your pain is not bad every day and you get a break from it. As far as removing lymph nodes that he is talking about I have read on here that sometimes they take extra ones anyway just to be on the safe side. I think the antibiotics will take care of your ulcer I had to take them a couple of times for mouth sores during treatment. I am glad you like your doctor and that he is such an advocate for you. Do you have any idea when they may start your treatment? Best wishes-Take Care-God Bless-Russ
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I just brushed my teeth with
I just brushed my teeth with a few drops of lavender oil and it might be better than the tea tree oil. Very soothing and helps with the pain. Almost as good as lidocaine without that annoying initial burn feel or hospital smell.
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Thank you Russ. The only
Thank you Russ. The only treatment being discussed as yet is the surgery in a couple weeks. Just a WAG here-they may be yanking those three molars out not just for clean margins but just in case I need radiotherapy too-even though that hasn't been mentioned. Pain notvtoo bad today. The Boy is dropping by maybe we'll all do yardwork again.
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Nothing new to report on my
Nothing new to report on my part. Just wanted to jot a few things down.
Took the Seeing Eye Kid on a tour of the places she'll have to take my husband to-though she probably won't drive but help him with his walker at the door, park, and drive car to door again to pick him up.
He is having a hard time. One day on the way home from UCSF, a car almost clipped us. It scared me so I let out a loud eek which scared him into having to take two nitroglycerine tabs.
He has also been having incontinence issues in addition to edema. He has shortness of breath and is on oxygen. When me and the Seeing Eye Kid got home, he had a slight accident and I had to help him get cleaned up.
I have always been suspicious about the frightening array of pills he had to take after his heart attack last year. They put that man on everything under the sun! At one point, he was on 2 or three blood thinners! He was on statins(those were a nightmare for me)even though he had no cholesterol issues.
Anyway, the poor guy is miserable so I looked up side effects of all his medications and get this-EVERY last one of them is showing incontinence and shortness of breath and some of them cause cardiac issues. At least one of them causes edema. Go figure.
He is on two drugs for blood pressure because he was a tad high when he saw his GP so GP gave him another BP drug. He has been off the statins for almost a month-his decision. He told me to take the extra BP drug out of the pill organizer so I did.
He has always nagged me to get a GP and have a cbeckup at least once a year. I told him there is a reason why I don't. (I only go to get a flu shot or antibiotics if I have pneumonia or sinus infection or something)
I regularly visit specialists because my insurance allows me to. None of this gatekeeping BS. I have my ENT guy who monitors my mouth. Now I have a cancer guy who is making decisions on my cancer treatment. I also have an endocrinologist who monitors my hypothyroidism. They are all specialists and very good at what they specialize in.
But whenever I go to the GP type doctor, they ALWAYS want to get involved in my thyroid treatment and start testing me and monkeying around with my dosage which ALWAYS makes me sick. If I get sick enough, they can write all kinds of RX for THOSE symptoms.
The GP is not going to change your chemo or rads so why do they feel compelled to tweak on everything else? The specialists are handling it just fine, thank you very much.
Anyway, I discussed it with my husband and told him to go over his meds with his cardiologist, oncologist and respiratory doctor. Maybe they can give him better meds that don't leave him gasping for air or peeing all over the place. Maybe they can reduce or eliminate some of his meds.
I don't have much planned today. It's Sunday so maybe I'll make meatloaf, MPG(mashed potatoes and gravy)and buttered baby carrots with dill for dinner. The Boy made noise about moving stuff over to the new place. God bless him. : ). He came over on Friday and we all teamed up on the yardwork again. I am so blessed to have my kids.
Bye for now. Nothing new except the meeting with the hospice\palliative doctor in a couple days. We will probably be discussing pain management(a subject of exceedingly great interest to me nowadays, ha ha!)and the feeding tube maybe?
Later, you guys. : )
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ozy Thanks For Keepingozymandible said:Nothing new to report on my
Nothing new to report on my part. Just wanted to jot a few things down.
Took the Seeing Eye Kid on a tour of the places she'll have to take my husband to-though she probably won't drive but help him with his walker at the door, park, and drive car to door again to pick him up.
He is having a hard time. One day on the way home from UCSF, a car almost clipped us. It scared me so I let out a loud eek which scared him into having to take two nitroglycerine tabs.
He has also been having incontinence issues in addition to edema. He has shortness of breath and is on oxygen. When me and the Seeing Eye Kid got home, he had a slight accident and I had to help him get cleaned up.
I have always been suspicious about the frightening array of pills he had to take after his heart attack last year. They put that man on everything under the sun! At one point, he was on 2 or three blood thinners! He was on statins(those were a nightmare for me)even though he had no cholesterol issues.
Anyway, the poor guy is miserable so I looked up side effects of all his medications and get this-EVERY last one of them is showing incontinence and shortness of breath and some of them cause cardiac issues. At least one of them causes edema. Go figure.
He is on two drugs for blood pressure because he was a tad high when he saw his GP so GP gave him another BP drug. He has been off the statins for almost a month-his decision. He told me to take the extra BP drug out of the pill organizer so I did.
He has always nagged me to get a GP and have a cbeckup at least once a year. I told him there is a reason why I don't. (I only go to get a flu shot or antibiotics if I have pneumonia or sinus infection or something)
I regularly visit specialists because my insurance allows me to. None of this gatekeeping BS. I have my ENT guy who monitors my mouth. Now I have a cancer guy who is making decisions on my cancer treatment. I also have an endocrinologist who monitors my hypothyroidism. They are all specialists and very good at what they specialize in.
But whenever I go to the GP type doctor, they ALWAYS want to get involved in my thyroid treatment and start testing me and monkeying around with my dosage which ALWAYS makes me sick. If I get sick enough, they can write all kinds of RX for THOSE symptoms.
The GP is not going to change your chemo or rads so why do they feel compelled to tweak on everything else? The specialists are handling it just fine, thank you very much.
Anyway, I discussed it with my husband and told him to go over his meds with his cardiologist, oncologist and respiratory doctor. Maybe they can give him better meds that don't leave him gasping for air or peeing all over the place. Maybe they can reduce or eliminate some of his meds.
I don't have much planned today. It's Sunday so maybe I'll make meatloaf, MPG(mashed potatoes and gravy)and buttered baby carrots with dill for dinner. The Boy made noise about moving stuff over to the new place. God bless him. : ). He came over on Friday and we all teamed up on the yardwork again. I am so blessed to have my kids.
Bye for now. Nothing new except the meeting with the hospice\palliative doctor in a couple days. We will probably be discussing pain management(a subject of exceedingly great interest to me nowadays, ha ha!)and the feeding tube maybe?
Later, you guys. : )
Some updates going, appreciated. Sometimes I don't feel so great or get down a little but then I find someone in your shoes with an awful lot going on with herself and her husband. You certainly have a full plate right now. I have heard so many times of people feeling lousy or having other problems and once they get their meds evaluated and just take what they need or get meds changed they are much better. Wrong meds or being over-medicated cause problems for sure. I think you are wise on the specialists. When I was a young man a wiser older man told me if you want a good eye exam don't just go to a place that checks you for glasses or an optometrist go to an ophthalmologist who is a specialist in eye care. Take Care-God Bless-Russ
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Got a scary letter from the
Got a scary letter from the insurance company denying coverage for my surgery.
They are saying they don't have enough information about what the surgery is for, my medical condition, etc.My assumption is that the letter requesting authorization went out before they had all the pertinent info like PET scan results maybe or that it was kicked out automatically because ot the words "reconstructive(plastic)surgeon" and that someone needs to explain that MY reconstructive surgery is for function-not form.
Sent an inquiry to my doctor and trying not to panic.
Meanwhile, I am scheduled for a telechat with the anesthesiologist.
They are going to extract every dollar they possibly can from the insurance company I suppose.
Geez, everything is such a racket, isn't it?
You've heard of the pink tax? The organic tax? The quilting(or other hobby)tax? I guess there's a cancer tax too.
I will probably call the insurance company and try to find out how many hoops we forgot to jump through later. It's only five am here I wake up every four hours on the dot due to the ginormous craters on the side of my tongue, gums and floor of my mouth. Thankful for lidocaine and essential oil and pain pills.
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Just wanted to get this out
Just wanted to get this out too.
This dang nerve pain is so weird. It seems to move around and some days are worse than others. At this point I am on pain killers around the clock.
Some days I can chew, some days I'm limited to shakes. Sometimes it feels like I ate Drano and even the softest of foods-an extra mushy baked bean-will be very painful as it slides past my soft palate. Then the next day if I go real slow and careful I can actually chew on cheeseburger and fries.
I've got a feeling the last week will be the worst though and I will be reduced to nothing but protein shakes. I chewed on a very soggy cracker on the cancer side and it was very unpleasant and the extremely mushy noodles from the chicken noodle soup actually hurt when they are sliding past the soft palate.
On the bright side though I can still swallow and I never miss my dosing because the pain wakes me up now.... haha.
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ozy,
I got a message from my insurance company, denying to pay for removal of a lump on my neck. (I joke that luckily for me, the sample came back "not benign" - which saved me $18,000.00.)
I don't know a lot about insurance agencies, but "denying a claim" seems to be standard procedure. Your Doctor's office will likely clear it up pretty quickly, would be my guess.
I'm sorry about the pain. I can remember that, and I definitely feel for you. This may sound weird, but just the fact that you can eat smoothies by mouth, and still eat solid food sometimes is a big plus (even though it probably doesn't feel like it.)
All I can tell you, is that the sense of taste will come back. It just takes time.
I hope I"m right about the insurance, and I'm looking forward to hearing you talk about pain subsiding, and something that tastes GOOD again!
I'm sending good thoughts your way!
mg
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