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Six week follow up visit today

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

Well my hubby is going for his six week follow up today with the rad doctor. When he went for the 4 week check up he had Thrush so he told him to come back in 2 weeks. So, here we are, I am wondering if my husband will remeber to discuss with the doc about fatigue, nasuea (he got sick this morning) and the bump on the side of his tongue. He has also lost 6 pounds. Down to 141 last night. He has been so fatigued lately that he sleeps all day and does not eat. He waits for me to get home from work to say how much did you get in your tube today. Then I get the "oh yeah, I need to eat". I wish I could stay home every day and nurse him back to health, but bills need to get paid and I carry the insurance for the family. I think he is trying to not eat that much, because we went from a 2 income family to one and money is TIGHT. i told him dont worry about the money, we will not go without. I have a grant pending with this angel program and they are putting our request out to all the board members, so far everyone that has responded has voted in our favor. I will know more later this afternoon, once all members have voted. If we do get approved they will give us a grant for $300 a month for his feeding supplies. Just need a little break, we will not get SSI disability until October. Kinda shocked that they keep your first 5 months.

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

Arndog,

Here is to hoping that the six week checkup is a good one and that all of the questions about side effects, eating and the bump on your hubby's tongue get answered.

Please keep us posted.

Myka

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

He forgot, I swear that man relies on the doctors to have ESP. His mom is old country and she does not believe in pain meds and I think when he was a child he was treated with home remedies rather than doctor visits. So, I think that is why my husband has a hard time bringing up his concerns/mine. I am a worry wart and I am sure everything is just standard side effects. He did score 4 cases of Jevity that a patient donated.

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

My husband is the same way. I am a worry wart as well, and I can't stand it when he forgets or doesn't ask. Sometimes I just want the reassurance that the side effects are "normal".

Take care.

Myka

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Where are you located? I have a case of PEG Food and some gravity bags and a pole. Private message me and I'll send it your way.
Steve

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

I have one suggestion for you. Write the questions down the night before so he can take them with. When your in pain, do not feel good and tired all the time it is hard to remember anything much less push your self.

As far as tired and nausea all that is pretty common for many weeks after treatment, some actually get worse the first 6-8 weeks post treatment.

Most important is he continues to swallow, sips are enough and many times an hour as he does not want to loose the ability to swallow which is an auto reflex. I suggest he she's and speech pathologist very soon so they can work on exercises.

I asked for Vitamin B12 shots twice a week in 6 months post treatment, they seemed to help.

Try and remember when you felt your worst, did you feel like eating. It's like the flu X's 5 at least and with flu you know it's going away soon. What he's going thru now will only go away many times longer than you think it will.

Prayers going out for both of you.

John

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

Hawk, I messaged my info. Thank you so much... Let me know if you did not get my info.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Ok. He really needed to ask about that tongue thing. Can you force him to call the doctor, or I'd be calling the doc and rafting him out.

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

He goes to his ENT next week and I am going to go with him, and ask his doc what he thinks. My poor hubby is so tired and weak, I think just getting to the doctor is a major task for him. Poor guy, yesterday, when he got home he tried to carry in 2 cases of Jevity and tripped coming up the porch steps and now he has hurt his hip and shoulder. He is hurting this morning.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Yes, make a list of questions before hand. It's so easy to have something slip one's mind once you're in the consultation room. Hope your hubby is feeling better and soon. Cheers

Jimbo

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Aww, that had to hurt. I hope you get to go with him, that'll be good. Hope his hip and shoulder feel better.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

When did your hubby finish his treatments? Is he still having a lot of pain and taking pain meds? I wonder if you have considered antidepressants. The fatigue may be linked to depression. Sleeping a lot or having insomnia can be a symptom of depression. It is invaluable to have another person present at doctor visits. I usually remember to ask more questions than Buzz does and have not missed an appointment but then again I have the luxury of being retired. Is their a close friend or family member who can accompany your husband if you cannot? Karen

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

He is still on pain meds. He may be depressed, I just never pictured my husband ever getting depressed, he is such a positive man. But, he is dealing with something way bigger than him, so that could be possible. He seems to be doing better the past 2 days. Unfortunately, all of our family lives away and all our friends work. I will be going to his next appt. with him. We will be seeing his ENT and we really like him and next month I will go to the rad doctor with him for his 3 month check up.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Reminds me of myself when watching Christmas Story the other day....

If you saw it and remember,,,he wanted the Red Rider BB Gun like totally bad....He gets up on Santa's lap and is soooo speechless he has no clue..."a foot ball, ummmm OK, ya a football"....

I get to the ENT or MD's and once they start yapping to me and everything seems OK...I totally forget to mention anything I've been bit-chin to my wife about... I'm glad she comes to most visits with me to remind me to mention this and that....

Best,
John

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I love that movie! You'll shoot you're eye out, kid! And what is the first thing he does, but shoot himself in the eye. The kid bundled up in the snow suit never gets old either.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Totally like me growing up... I must have driven my mother nuts...ummm, well actually I guess that explains her behavior now..., I'm going to have to think on that one a bit.

Anyways, I was always doing stuff....

I begged forever for a 410 shotgun in my early teens. I finally got one and what happens...walking home I find an old shot gun shell.

Being how I've always been part pyro and boom nut. I take it, pry the cap out lay it face down on the cement and hit it with a hammer and nail to make it explode.

It does, and I feel a pain in my finger...look down and I'm bleeding all over the place. So what do I do..the one thing my mother (the nurse) always tells me to never do..I see the metal cap lodged in the tip of my finger..(in one side and sticking out the other)... I pull it out. Now I really can't get the bleeding to stop and have to call her to come home from work....

So...a story needs made up to cover the fact that I had a fragmented piece of metal lodged in my finger....and I just know she'll take my shot gun away. Hmmmmm, one of those canned ham twist top strips of metal...perfect.

"Mom, I was washing the windows outside (yeah right), fell into the bushes and landed on one of those canned ham metal strips....."

My pediatrician knew I was full of crap...finger mangled, gun powder all around the wound.... He kept saying, how did you say you did this again.....and you mother believed that...LOL

JG

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Lol. I think we all have one of those stories. Usually our attempts at cover ups are pretty lame. :)

rozaroo
Posts: 667
Joined: Apr 2010

My dad would take us girl's fishing & I was a brat! Had to explain how the lure got attached to my sister's butt lol! That's what she got for locking me in the closet the previous day!

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

That is funny!! What a stinker.. LOL

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I was out in a primitive Wildlife Management Area fishing recently. At this particular area you have a station that you check in and out of (a desk person you talk with)....

I'm in there leaving after turning in my paperwork for the day....

Some pick-up truck comes flying up sliding gravel into the parking lot, a guy jumps out slinging the door open..."Where's the nearest medical clinic"... He gets directions and he turns hauling butt back out to his truck (with a big lure full of treble hooks sticking in the butt of his blood stained jeans).

Apparently while fishing, he changed lures, took the old one off and slung it into the seat of his truck. Forgot about it and jumped into the truck and embedded about three hooks in his rear.....OUCH...

JG

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

Damn that had to hurt, poor guy..

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Get well soon Arndog. Here's hoping your ordeal will be over soon. Cancer devastates in so many different ways. It breaks my heart to hear you guys are struggling. I wish I could help but I too am trying to pay bills. I HATE cancer. Love U2, Homer & Connie

Daddisgrl's picture
Daddisgrl
Posts: 119
Joined: Feb 2011

I couldn't deal with talking cancer for the last few weeks because of my dads bday.. I've wondered how you are doing.

This is so complicated.. everything has to be taken into consideration.. treatment; side effects from; how they are doing mentally (mine was depressed); medications; lack of saliva & thrush.

Did they give your hub saliva pills? If not demand some- Evoxac or Salagen.
Biotene toothpaste; mouthwash- it all helps.
Gum- to get saliva going
Lots of water- room temp
Rinsing his mouth with baking soda.. other can elaborate more if he should add salt
Antidepressant- hub was on Lexapro that made it worst- Effexor worked better

Eating- I knew to expect this- lack of saliva makes you not want to eat. Before my hub was diagnosed I followed a blog so I knew that he had to be reminded to eat.

When my hubs tongue started feeling weird; we knew the thrush was coming back & what eventually helped to stop it was a product by the Biotene products called breathRX. I guess it was enough to help adjust bacteria in the mouth so that fungus did not grow. There is no antifungal in it; so I can't explain how it worked.

Read the medications for side effects.
What I found was that some pain meds did not take the sore throat away; this is why I swear by the Actiq pops because they coat the throat & actually help the pain; & side effect wise they were easier because he was not needing as much pain medication. At your hub's point; my hub was sucking on one pop per day; some days it lasted over a day; thats how good the pain relief was. I got this tip from the blog I followed if you want the link email me.

Daddisgrl's picture
Daddisgrl
Posts: 119
Joined: Feb 2011

Not sure if you saw my comment in one of your posts about a site that lists feeding tube supplies - some give it free

Here is the link to that section - http://www.oley.org/EquipExchage_completelist.html

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