Noob with floor of mouth cancer

The leak isnt happening anymore on the picc line.  The skin looks really good no pain or itching.  No fever.  97 point something everyday.

Well today was my toughest day and I know they're only going to get tougher.  

I cried when I was putting the mouth guard in I almost couldn't do it then it was pressing down too hard on my lips and hurting like YKW .

They cut a hole in my mask to try and relieve the pressure and scooted me up just a hair and then it became bearable.  Somewhat.

I'm giving up on solid food now I just can't.  It's gonna have to be smoothies, jello, yogurt and soup.  Pudding.  Anything with chunks will be pureed.

And since water tastes like salt I'll eat pureed stuff and smoothies and slam enough water into my tube to get my hydration needs taken care of.

I was able to drive there and back I did not take pain meds.  As soon as I got home I busted out the liquid oxy.  The vikes are too hard to swallow now.  I might ask them for liquid oxy and gabapentin.

I can't believe how suddenly I have been hit with the side effects.  I just ate a big pile of french fries last Thursday.  As soon as I got that PEG tube in and had the overnight in the hospital everything went downhill all of a sudden.  I knew it was going to be bad I figured it might be just a tad more gradual than this.

I ordered some glutamine to put in my water.  I read on here that that stuff is very helpful.  I'm home now and don't have to go anywhere so I'm going to medicate and find some good music to listen to or just go to sleep.

When I was in the hospital I was by myself in the room and they closed the door.  I was listening to music on the tv alternating from classic r and b, oldies and country.  I was laying in bed singing "You Never Even Called Me By My Name" by David Allen Coe.  Kind of cheered me up.  I can have a good time wherever I go if I try.

Working on my shake and the oxy is kicking in thank God.  The shake feels good on my mouth and doesn't taste too salty.  

The PICC line still looks great.  Maybe they finally got enough glue on the dang thing.  Looks as fresh as it did when they changed it.  I'm very happy about that.

Later y'all.

Still don't have my feeding supplies sorted.  The hospital said I was homebound on the discharge papers so in addition to teaching me how to run the PEG the infusion pharmacy wanted to schedule weekly nursing care.  Um, I don't think so.  I drove myself to radiation and back the last two days that is not homebound.  I wanted to have Coram handle my supplies like when I had my NG tube.  I asked for Coram "No, we contract with Sutter."

In trying to resolve getting different stories from everyone.  Hard enough fighting cancer I have to waste valuable exercise and smoothie drinking time trying to put out the fires that some incompetent people temporarily in charge of my care started.

When I called the hospital people the last time they said they would have to completely start over.  I just threw up my hands and called a member of my cancer treatment team.  We'll see what develops.

Lord have mercy.

They want me to use a patch for pain.  I'm not doing that.  Even if they prescribe it I won't put it on until after I'm done with treatment if possible.  I'm taking pain pills as needed when I don't drive.  If I can still drive on exedrin(for caffeine now coffee tastes like salt)or nothing I really don't need a patch that will deliver continuous pain relief. Sometimes I don't want pain reliever in my body.  Sometimes I have to drive.  Sometimes I need to conduct important business.  Sometimes I need to sign papers.  If they demand I use nothing but a patch I will then have absolutely no control over the amount of pain meds in my body at any given time.

If they won' t give me anything but a patch I'll just have to use whatever is on hand and grind it up and tube it when I need it.  Nothing I have is time release so it should be fine.  I'm in no position to be out in the world with my defenses down like I would be if I used a patch.  If my mouth pain can be resolved with topical lidocaine to where I can put my mouth guard on without crying I should be allowed to do that as long as I can.  They wouldn't even give me any more lidocaine.  I just don't understand this.  I can see where maybe they might be worried about oxy and gaba in liquid form.  But viscous lidocaine?  I need that anyway to brush my teeth with.

Feeling kind of defeated and crushed right now.  I don't believe I'm asking for anything unreasonable.

Just a quickie note here.

Thanks to everyone on here(not on the thread)who recommended glutamine.  I've only been using for two days and it is helping so much already.

I added it to my baking soda water bottle I drag everywhere.  

Okay later days.

I talk the place up when people complain because they took good care of my husband.

Some woman was furious because on her first day she had to wait a while.  They probably tried to squeeze her in so she could start her treatment right away and I put everyone behind schedule because I was late getting out of chemo NP appointment on different floor.  I explained this to her and said they will take good care of you here.

No good deeds go unpunished, right?  

I know I said I give up on real food.  I was able to eat 2 over easy eggs and I drank a coconut water.  So thrilled!  Whoever said coconut water for  less salty liquid and use glutamine thank you.

Yes, we have to do whatever we  can to just keep on living.  I don't know how you do it lady.  But what else can you do but just whatever you can one day at a time?

I had two more eggs this morning and I'm finishing up 2 cups of malt o meal with butter, brown sugar and cream.

I can't really taste much but it's not real salty(yet)so good enough for me.