Noob with floor of mouth cancer

ozymandible said:

My husband passed away

My husband passed away recently so I've been too busy to post here. It has been extremely hard on all of us.  We made part of his final arrangements but I will have to wait on the rest until I get the finances in order.

  I have to continue our health insurance so I can finish my cancer treatment.  I am making my cancer treatment the number one priority right now.  There is so much to do regarding junk in the house-old papers and whatnot, moving accounts into my name and trying to gather old family photographs and artifacts to split amongst his blood relatives.  He kept every piece of paper that ever crossed his path all his life.  There are tax returns and check stubs almost as old as me.  Going to get it done before I start chemo and rads which is sneaking up on me quick.  I can't be messing with this during treatment.  It will definitely stress me out and might even make me sick.

Our family isn't very large and many of the people he knows are multiple hours and states away.  The kids want me to just concentrate on my treatment and leave things to his brother and daughter.  I will make the rest of the arrangements but after that I'm out.  This is all wearing me out and I haven't had a day yet where I don't go in between curling up in a ball and wailing or feeling like I'm going to vomit.  What little time I spent with them was extremely draining.  My husband would want me to focus on my treatment plan.

I have a list of dentists so I can make an appointment for me and my daughter.  Consultations for chemo and rads will be happening soon.  Don't know if I should go to the dentist before or after my consultation?  Do they have some kind of checklist or forms the dentist has to fill out?  Or do you just go to the dentist and explain that you have oral cancer and will be starting radiation?  What about the flap in my mouth?  What if they have no idea what to do about that?  Do I try and find someone who has dealt with oral cancer patients?

Thank you for reading.

I just wanted to tell you how sorry I am for the loss of your husband and for what you are going through with your cancer treatment.  I can't even imagine the stress and grief you must be going through right now.  You are in my prayers.  

For the update. It seems things are going pretty well for you and for that we are thankful. Swallow study great, remaining teeth great, no pain meds needed so you are celebrating some positives through all this anyway-Take Care-God Bless-Russ

ozymandible said:

I had my consultation with

I had my consultation with the chemo doctor today.  She expressed some concern regarding late start date as surgery was clear back at the beginning of March. I believe I was delayed due to getting COBRA started, making part of my husband's final arrangements and my referrals got dropped somewhere and I didn't follow up soon enough.  Plus 4 to 6 weeks for all my stuff to heal.

Chemo will be once a week "baby" dose of cisplatin to amp up radiation.  Chemo will worsen side effects of radiation due to the amping up.  I am to make arrangements for a PEG to be in place no later than four weeks from now and I may get a picc line if my veins get too crappy.  Nutrition and hydration were stressed as was swallowing for as long as possible.  Antinausea drugs will be provided and toward the end many pain meds will probably be required due to radiation side effects.

She has only seen a very few escape having to use a PEG.  Making noise about next week already.

Why does this scare me worse than my surgery did? 

Recommend getting the PEG and not putting it off since your medical team recommends it. This can actually put your mind at ease knowing that if and when you get to the point of having trouble eating or not being able to eat at all for a bit you are covered, you got the PEG for your feeding backup. I have had 2 of them and I would say when I got the first one and you go home and look at it and think this is not really what I want, and I agree but it is where we are at in this situation. After a few days, you get used to it and forget about it pretty much and when it is supplying your nourishment when you can't eat for a bit, well now it becomes your friend. I have read on here where doctors would give patients options to hold off and during treatment, if you need one get it then but I can't imagine that. By the time you need one you are feeling lousy from treatment and with H&N  cancer many times your throat is sore and swollen somewhat and they have to put you under and do an endoscopy through your throat to your stomach to put one in. It is much nicer to schedule one and have it put in while you still feel good. They take just a small amount of maintenance if you are not using them just run a syringe of water through once a day to keep cleaned out. if you are actively using it you will put food, liquid medicine, or crushed pills mixed with water through it and run a rinse through afterward. I sympathize with you it is a huge amount of stuff you get hit with going through in this cancer journey. I myself was going along fine then suddenly had a sore throat that wouldn't go away and the next thing I knew I was diagnosed with throat cancer. Then the appointments start with scans, blood tests, the chemo doc, the radiation doc, then they wanted me to get a PEG, and also a port in my chest and all this hits you at once. Suddenly you are just an average joe living your life and now you are heavily into medical procedures and treatments but this is the only way you will beat this. I'm no expert but I would ask if you would be better off getting port as compared to a pic line. The port was under my skin in my upper left chest area and they would just push through my skin into the port thus saving any wear and tear on my veins and was I glad I went along with their suggestion as you get more intravenous stuff than you realize going through this. Besides chemo I was also getting fluids put in by infusion now and then to bolster my system during treatments and if you need other stuff infused or injected you are covered. I know this is a lot to take in and I know it was for me but if your team is recommending these things I would go ahead and get them I did and am glad I did and glad I had a medical team that knew what was ahead and what was best for me. As far as the feeding tube you will need something to hold it up when not in use and being active. My nurse navigator gave me a picture showing a solution. Take a pair of old underwear and just cut the elastic band off for your waist side is already a fit for you. If women don't give you good coverage then buy some men's briefs like Hanes or something they probably have a wider band to cut off. Just an FYI if you get to the point of ever needing to crush pills CVS and other drug stores have a good working cheap hand crusher that works great. I still use one today as I don't trust swallowing whole pills anymore because of getting stuck. Here is a link to look at an example of one  https://www.cvs.com/shop/cvs-health-pill-crusher-plus-storage-prodid-715079

Here is a link to an article going over the pros and cons of port vs picc  https://blog.mighty-well.com/2017/07/picc-line-vs-port-important-facts-to-know-before-making-a-decision/

I know this is a load ozy but be comforted that your team is looking out for you and what they suggest is a great help. You can do this we're pulling and prayin for ya-Wishing You The Best-Take Care-God Bless-Russ

Get it, you won't regret it.

Make sure you get the 2 kinds of anti nausea meds, and the steroids for every chemo. Start the day of and do day after. (usually prescribed this way) Get crystallized ginger - taste not so great (to me at least) BUT it settles your stomach

You will need your own towels/utensils/dishes

Smoothies - Boost (they make one for women now?!?) banana, 2 scoops ice cream, carnation instant breakfast - blend, easily LOTS of drinkable calories - I never got the tube, I was told swallow as much as you can

I used the blender on everything, I made homemade chicken soup and froze in small amounts - I swear my stomach was the size of a grape. DO NOT do applesauce or juice! (Ascetic acid HURTS)

Dont think you'll do radiation early in the day and get it over with. Do it late, because that sucks everything out of you!

You will lose hair. From ears down. I had long hair and didnt really notice, but if I had to do today, with short hair I'd get pretty scarves, sun hats.. not a wig.

Nuking your neck will probably do a number on your thyroid, have them watch it.

Umm.. what else - I got Aloe Vera Gel by green leaf from amazon, and smoothed it on my skin, use SPF100 on your neck when not being radiated. - The radiation nurses always knows how to fix burns etc, they are awesome

I am sorry you are here, If there is anything I can do, let me know.