My sister is having an incredibly difficult time swallowing due to the pain its causes...so much so that she isn't getting the nutrients she needs. The cancer is on her tongue, but her main source of pain is her throat. We saw the doctor Monday and he put her on liquid morphine to get her through until her surgery this coming Monday. That has proven to offer little relief. She had been doing pretty good drinking Ensure when she wasn't hungry and eating soft foods when she did have an appetite, but now we are having a hard time getting her to even drink enough water.

If she isnt able to eat or drink enough to sustain herself, she will need a feeding tube. This is something most patient detest! But its not a choice for some, like your sister. She MUST take in enough or she will feel horrible. When going thru radiation she would need a minimum of 2500 calories and 48 oz of water every single day. Her body is burning up calories like crazy and she will very soon become dehydrated and malnourished. This can cause hospitalization and possibly a delay in her surgery.

A nasal feeding tube can be inserted right there in the office and is a great temporary fix. For a longer term use, she would need whats called a PEG tube. This goes directly into her stomach.

Call the doc and let them know how badly she is doing with her intake. Something must be done right now! Do not take NO for an answer, insist on the doctor helping her immediately. You have to stand up and be her voice, speak up for her and get her the help she needs.


PS... Ask for pain meds too. Nobody should have to suffer on pain like what you described.

We have called 3 times trying to talk to a nurse at her doctor's office today and are still waiting for a call back. Is it reasonable to take her to a local ER for IV fluids or am I over-reacting?

I don't know what else to ask for. She's been on Loratab, then Percocet, and now this liquid Morphine. She was doing a lot better while she able to take pain medicine along with Ibuprofen, but now that surgery is so close they told her to stop taking it. Is a steroid beneficial in reducing this kind of swelling?

If you think your sister is dehydrated and needs the IV fluids now, then yes take her to the ER. I would call first thing in the morning and then again at noon. Tell the receptionist that it is an emergency and you need to speak with the nurse ASAP. They can actually page the nurse and get her on the phone if they really want to. Dont ever forget all these people work for YOU (well, really your sister but you are her advocate so you call the shots). Speak up and get them to do something right away. Your sister cant go all weekend without taking in enough fluids or calories. No wonder the poor girl feels horrible.

Good luck!

Rebecca, many people here have been hospitalised because they were dehydrated. Don't take no for an answer. I couldn't agree with ChristineB more. Patients really need an advocate when they enter a health system, in any country.

It occurred to me that with an 18 year old sister you must be quite young yourself. I'm sorry you're both going through this, and I hope there are others around you, supporting you.

Even during Tx and under the care of Moffitt, a top rated CCC, I ended up in the ER 3 times to get much needed fluids so DO take her immediately. I doubt anyone will bother with a feeding tube a few days before surgery but they may post surgery depending upon what happens then.

What have they said they will do in surgery?

She absolutely should go to the re. They may opt to keep her in until. Monday - poor thing tongue pain is brutal, best of luck Monday, if she is at home try milky liquids they coat and sooth, hugs

We took her to the ER and she was given IV fluids and Ativan. One of the surgeon's in her group came down and talked to us. She said come hell or high water, they are doing the surgery Monday. Our goal is to get at least 3 Ensure shakes and as much water as possible down her until then. They weren't overly concerned about dehydration at this point, saying they can provide her needed fluid via IV at the time of surgery. So, now we wait.

Likely a jaw split (we're really hoping not), partial glossectomy with reconstruction from forearm, neck dissection, trache, feeding tube and skin graft from her thigh to her forearm.

Rebecca, wishing you and your dear sister strength to make it through the weekend. Don't be shy about hitting the ER for fluids. I hate it when young people have to go through things like this. I will be thinking of you both. Please keep us updated as you have time.
Maria

Glad your sister got what she needed with the IV in the ER. Poor thing probably felt horrible. Such a darn shame when someone is going thru so much at a young age. She should recover much quicker than someone older in the same situation.

Here is a high calorie chocolate milk shake recipe I made up while I was doing my radiation treatments. Each shake is well over 2000 calories each. They are huge but really good. They should go down easily too.

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder

Blend this extra long to make it very smooth and creamy so it goes down easier.

Another thing that should help is the List of Easy to Eat Foods.

Best wishes with everything!

Hugs and best of luck hon... hopefully she will get through it okay.

Wishing for the best outcome and as less pain as possible. You are a great sister.

Rebecca,
let them know that not getting back to you on a timely basis made you and your sister very uncomfortable and anxious. Ask them what you or they can do to prevent this from happening. Find out whom your go-to person, or two is, and maybe get a cell phone number. Get phone numbers in all places that she may be. Best of outcome to your sister. We've been there and are all here to help and support.
All the best,
Rob

Hopefully her surgery went well. hugs.