LGH

My mom is adamant that she will not have any type of feeding tube installed (including a PEG). Her continued wish is to hang on to (now limited) independence as long as she possibly can. Once her pain reaches an unbearable level, she plans on a rapid morphine induced coma followed by a quiet peaceful death.

From everyone I have spoken to (on and off this wonderful site) plus my own personal experiences (dad, a close friend and my mother in law) you should know the following:

The pain control meds of today provide a slow peaceful transition as the body starts to shutdown. I am sure that your biggest concern is that your mother will not suffer. You need to accept this truth (making sure of course that she gets the proper meds)

Hi Paul,

I am glad that you are getting time with your Mom and making those memories. It sounds like hospice is doing a good job of managing her symptoms and I know that her passing will be peaceful when that time comes. Is she still eating her Bassett's?

Regards JoAnne

JoAnne,

Thank you for your warm thoughts and wishes. Yes, mom is still eating her Bassets... Indeed, her intake of the ice cream has increased to almost 1 pint per day. Thankfully, WA-WA decided to carry it again... I now don't have to buy out every pint at McCafferties each week.

Mom is very close to moving onto stronger pain meds.. She is in a precarious quandary right now... The tumor tentacle growing down her throat is getting so big now that swallowing pills is a impossible without them getting stuck. The hospice nurse got everything in liquid form. But unfortunately, the liquid form of these meds burns the heck out of her mouth. She tried the butter method on half a pill. She wasn't happy with this option.

Her first modified method (eating a spoon of ice cream immediately after taking a spoon full of the meds) is not alleviating the burn enough. Next, she tried mixing the meds with the ice cream. Sadly, when she swallows the (partially melted mix) some of it coming out her nose, the vicodin burns her nose (and mouth).

My sister brought mouth spray to num her mouth. But, mom can't open her mouth wide enough to spray in her mouth. Next, my sister filled half teaspoon full of the vicodin in several mini ice cube tray containers. The tray was put in the freezer Friday night. On Saturday night, my mom was going to attempt to eat and swallow the frozen mini vicodin cubes. Sadly, the alcohol in the vicodin wouldn't freeze (ugh...). I guess that is the same alcohol that burns her mouth.

She has zero fat so pain patches will not work properly.

Suppository is yet another option. Mom wasn't keen on that option.

I brought up the idea of getting a PEG telling her that the meds could be administered from the PEG (along with nourishment and fluids). She snapped at my saying that she couldn't live alone once she gets the PEG.

The when to say "enough is enough you can't live along anymore" is sooooooooo hard to determine.

Thanks,
Paul

Hello Paul

WOW! You sure have your hands full. But you are honoring her last wishes.
Thank You for your frank advise, It did not fall on deaf ears.
I have pondered it for weeks and also PM'd a few others.
This cancer was just a straw on a hay stack of bad circumstances. But it broke me, mentally & physically.
Trying to get through the red tape has been like trying to dig through bedrock with a shovel.

I truly feel I would have received better treatment if I were a DOG brought in for emergency treatment at an ASPCA....

A lot of people feel like I'm letting them down. I can only change Petey, none other.
The people on this forum are the most extraordinary and compassionate people I have ever met, bar none!

Anywho, it's getting hard to eat (hurts).
I'm not as brave or as strong as your Mom. And I won't carry it that far. I'm just looking for a month or two.

So, after all my trials and tribulations, it brings me to one simple question. Can my GP prescribe the appropriate pain meds? What should I ask for? Please let me know.

Try to enjoy your Easter. Mine will be more like a "last supper".

You are in my prayers
Sincerely, PeteyB

Petey,

Seriously..I almost wish we were in your shoes.
My husband had his lymph node biopsied 2 yrs ago and they said it was negative. This passed November 2006 it was biopsied again and positive..along with 2 others on the same side and one other on the opposite side. So. Stage IV base of tongue.
You probably have a much better chance of fighting this and winning than he does, but here we are fighting the fight, with our regrets of not getting a second opinion 2 years ago.
Ultimately the choice is yours, but if you are just giving up because of red tape...I don't get it. We all know how hectic it is when the initial diagnosis comes and we have what seem like a hundred appointments to keep track of, but once things settle down and therapy starts, it really does get easier.
I have no idea how to help you with the insurance problems, but I am sure if you ask about payment plans they must have something to accomodate patients. I hope someone else in the forum can come through on that end for you and your family.
Vicki

Hey Vicki
I have been folowing your journey.
A lot of people do not understand that base of tongue is different from tongue. Tongue is on the front 2/3rds,and must be cut out. Base of tongue can not be cut out, to risky, to much damage to other "parts". If I could just get chemo, and rad, I'd do it. But they will most likely take my whole tongue. Then the rad & chemo. 8 months of hell & no tongue. That's where I got off the buss. Thanks for your concern, Good Luck to your husband.

Petey,

I still don't get your extreme pessimism about this. My tumor was also on the front 2/3rd of my tongue (along the side), and was POORLY differentiated (which, as you probably know by now, is worse than what your biopsy seems to be showing). I had surgery, followed by radiation, 18 years ago -- count them -- 18 years. Yes, treatment was tough, but once I recovered, I got back to eating whatever I want, have traveled all over the world, and have taken up activities that I wasn't even doing before cancer. Stop talking like you have one foot in the grave, and get moving toward a course of treatment that can get rid of this disease.

Cathy

Petey,

I am only a few years shy of your age. I have two kids (ages 12 and 15). If I were you, I would do whatever it took to beat this disease or at the very least, extend my life as much as possible. Your kids deserve the effort. Enough said on that... I wish you luck my friend.

Paul

Petey,

I forgot to answer your question about pain meds... Yes, your GP can prescribe pain control medication. My mom has been on Vicodin for most of the past 12 months (increasing dosage, decreasing time between pills).

Petey.....I know that this isn't your thread, but I will respond to you....You say that IF you knew that you wouldn't have to lose your entire tongue, you'd do the rest of the treatment. Have I missed something here?? It seems to me that you have never had a proper diagnosis, nor even a suggestion of a treatment plan made by a team with expertise in this field. You are throwing away your chance for a future without even knowing what you are fighting!!!!! Get going tomorrow. Don't make phone calls. Take yourself to a medical center, and simply BEGIN.

Look at it this way: You can have a few months of hell and be dead, or you can have a few months of hell and get better and have a life and another chance. What's the worst that can happen???

At least find out what the full diagnosis is, and what the probable treatment is. You are presuming that you will lose your entire tongue. Read the posts for BOT patients. MOST of them were treated without surgery.