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almost 3 months out

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

almost three months out and my husband has not been feeling well and he is kinda hoarse and his throat hurts more than usual. He said "I thought all this was behind me and now I feel like I am getting worse". Anyone else experience this kind of setback, so far out?

KareGiver
Posts: 290
Joined: Apr 2011

My husband says his throat is sore and he finished rads the first week of June. His voice sounds muffled (like there's mucous in there - I know, gross). He has already had his first scan and they were not concerned about the sore throat. I know I am impatient for him to feel "great"...I am guessing you are too. Ah, the new normal. Your husband really had a rough go there for awhile. There are many on here who have been through this before us who will remind us to be patient. Good advice. Thank God for all of them. Take care!

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

My husband had tonsil cancer, he is 4 months out today, he had his pet scan Friday will know the results on Monday. He just can't taste yet and this makes it hard to eat so he is so skinny, and he is tired and hurts all over. I know that he will get better, doc says time is all we need to heal. What I have read this type of cancer is very curable, and I know in my heart he will be fine, and so will your husband, its just so damn scary.

God Bless

Linda

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

You are right...it's a long slow process measured more in weeks and months versus days and weeks....one step forward, two steps back.

In time he should get a lot of taste and saliva back....I'm just over two years post tretament and have about 90 - 95% of both back.

Best,
John

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

The gift that keeps on giving....

Things like that are all part of the norm...it comes and goes. All in all it's still better than the alternative.

If you feel at all that its something to look at, let your ENT know... I had several trips to my ENT during the first year when you are still paranoid and having tons of anxiety at anything new....

Best,
John

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

Has he ever had thrush? Check his mouth to see if its red & or has those little white bumps. My hub got thrush about this time; then it was every 2 to 3 months up until he was a year out of treatment. He finished treatment 12/2009- October 2010 was pretty bad; thrush & MRSA; then November & December his immune system was still pretty bad; the October thrush was finally knocked out.

If your hub is like mine & gets antsy- mine ended up going to Mexico fishing October 2010- I begged him not to go because he'd pretty much just stopped napping late August; early September so I knew he was still weak.. well I was right; the trip wiped him out pretty bad. The MRSA started as what looked like a zit on his butt; what I figure is it was a zit but sitting on a dirty toilet seat he probably picked the MRSA up.

He needs to be careful for the 1st year if he wants to feel better

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Arndog: I am about 3.5 months post rads and have had one setback which really ended up being a touch of a flu bug that was going around. Of course it freaked me out too, thought I was going backwards in my recovery. called the doc and he suggested it was a head cold, which pretty much explained the sore throat and hoarseness. give it a few days and he should be better. Give in to the naps.... our bodies are telling us they need to rest so try not to fight it especially if he did catch a little bug. Our immunity is weakened so we may well catch more bugs than we used to. Force the liquids. Hope you feel better.

KareGiver
Posts: 290
Joined: Apr 2011

That's what we are trying to give it. A year to feel better. And that's if we're lucky. We're only halfway through.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

You'll do fine...every day gets better

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

Hey Arndog and wife, Connie is 5 months out and progress has been slow. The C. is like the song, Hotel California "you can check in but you can't never leave" I hope someday we can ALL return to our normal boring lives but we will appreciate life more. Here's hoping it is just another bump in the road. Connie goes for a CT scan this Thursday the 25th so we both have our fingers crossed. Take care, Homer & Connie

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

Hoping this is only a very temporary thing and he gets back on the right road to recovery. Really, 3 months is not that 'far out' from treatment. We all want that recovery period to be short and sweet, but it doesn't seem to happen that way. Stay strong and if things persist as they are now, get thee back to the doc. Cheers.

Jimbo

waywest's picture
waywest
Posts: 44
Joined: Jul 2011

We are over 4 months out and getting so discouraged. It's one step forward 2 steps back.
It seems he was doing better 2 months postX than he is now. There is the ear pain, the neck pain, the lack of saliva and now we have thrush and necrosis thrown into the mix.
My husband is so thin now that when he stands sideways he becomes invisible . He was so vital and dynamic just a year ago. We have only had one or two days that approached normal.
Very teensy baby steps on this recovery.I have learned to measure the progress in months now.
We celebrate the milestones as they come, however insignificant. Like, no more PEG (YAY)
Rad burns all healed (YAY)No more mucous from hell (YAY)Able to tie his own shoes without keeling over (YAY)Can walk a straight line without listing to the left (YAY):-]
Gotta be patient with this one I'm afraid.

W.

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

For the past couple of weeks, he was doing great. Running errands, cooking and cleaning. Then bam! he was shut down from Friday - Monday. Today he did move around some and ran to the store for something.His throat is hurting worse now that it has in the past 2 months and he thinks his salivary glands are starting to shut down. I guess time is all he needs. No way am I frustrated with the scenario, just concerned. We always worry that the cancer might be coming back with subtle changes.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Just a reminder...keep the hydration going...it's easy to feel good and forget about hydrating...then before you know it..BAM. Especially during this summer heat...

Best,
John

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

Not only hydration, but remembering not to over do it when you do feel ok. I was always someone who would try to do to much when I felt ok, then I would be knocked on my arse for two or three days. It doesn't take much to knock me on my keister these days, I didn't sleep well for a couple days, and I was out and about, running errands and what not. I fell asleep last night between 9-10 (which is unheard of with me. I fall asleep usually between 2-4am). I slept until 10:30 am!

I am planning some stuff to do this week and weekend, and I am wondering if I am going to be sorry. I figure I will be comatose by Monday. The sad point, is that it's going to take me two or three days, to do what I used to do in one day.

Sunday I want to go to the Renaissance Faire, about 3 hrs away. I'm hoping that the girl who is going with me will drive, because I'm afraid after 10 hours of being out and walking around, I may be too tired to drive home. Yep, I should be comatose by Monday.

waywest's picture
waywest
Posts: 44
Joined: Jul 2011

You are so right, Sweetblood! That's exactly the scenario. The minute he feels a little better he knocks himself out trying to do everything he has missed. He'll walk for miles on the beach and then climb back up a very steep hill to come home. The next day, it's back to square one and practically comatose.I think getting stamina & strength back is a very s-l-o-w process.
I don't post very much but I am always here and I want to thank you from the bottom of my heart for that invaluable superthread. What a wonderful tool for all of us here and I use your smoothie recipes daily.Mostly a wasted effort though because I think the minute I turn my back things get poured down the sink. I try.
Good reminder about hydration Skiffen - easy to forget that one unless one is trying to eat and encourage food to move along down the old esophagus with a gallon of water

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

You're welcome.

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

I drink 5 to 6 bottles of water everyday, my doctor recommended 8 but I just can’t get there or I would be drinking water all day long….. May be that is what he wants but he don’t have to live close to a bathroom like I do if I drink that much everyday.

Anyway it sure keeps me clean or should I say washed out… lol
Hondo

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

BIG YAY (or as we say in Alabama YEE-HAW):>)

brigboo67's picture
brigboo67
Posts: 24
Joined: Apr 2011

My mom is 6 weeks out from rads. My sister and I are concerned because she is eating very little and is so thin. Somedays she has no desire to get out of bed. She still throws up alot. Her post rad petscan is Aug 29th. We lost my dad to his cancer during my mom's treatment. I just don't know what to do for my mom...she said she has no desire to eat or get out of bed. My sister and I have talked to her doctors and they all say "she has been through alot with her own cancer and losing her husband". My sister and I know this but we feel there has to be something that can be done. They have her on zoloft and ativan. I am hoping Monday brings good news and it will help her mental state.

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I can't believe what she has been through, she must be one tough lady. Give her a hug from this bald headed Alabama survivor.

My thoughts and prayers are with you.

Denny

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

As stated so well here by those who have marched before you:

1. End of treatment doesn't grant you and automatic "feel good pass" other than the one for not having to listen to that machine, wear that mask, drive to the doctor's office or inject the poison. Many of you are still cooking and yet disappointed that you aren't feeling better...that is not logical.

2. You must take care of yourself and not over-do. Drink fluids and when you feel the beginning of fatigue then STOP and rest. Be aware of this and watch for being tired. It is a part of healing. This is easy to say but hard to do. You want so badly to be normal again that you push yourselves too hard and then have a set-back

3. There is no magic "Wow I'm well and I feel great" number of days you have to suffer before feeling better. Some will be better in weeks and others in months.

4. Focus on the positives. As stated above, Enjoy the Yay moments.

5. You are going to have mucus problems and the crap will stick in the back of your throat. There is nothing you can do about that but there are things to make it less intrusive.

It took months to destroy your body (and the cancer cells) so give yourself a break and allow yourself the time to heal. You and your caretakers have been through a very rough time, one that defeats many people so be proud you won but also be patient. Laugh at the mess your body is in, it will get better and it keeps you from crying.

O'k Hondo, Sweet and Skiffen I'm off my soapbox.

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

Ops one to many

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

You were doing so well! lol

Hondo

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

Dude, you can stay on the soap box. Saves me from being up there. Lol.

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

I am aware that it takes a long time to heal, and I do enjoy every minute I have with my husband. What I am trying to say, is that I am concerned that something is going on. He has not been feeling well since Friday, he said his mouth is changing and it is causing more pain, than normal. I think he is even concerned, he asked me last night when his Pet Scan was going to take place and what time. I was not complaining about the slow process, I am worried that the cancer may still be active!!!

jim and i's picture
jim and i
Posts: 1627
Joined: May 2011

I know what you mean. Every thing that changes is frightening. Have you called his doctor and expressed your concern? I would think they are used to the calls. Until you get that first PET you always have it in the back of your mind that maybe they didn't get the cancer, I know it is always on my mind abd on our children's minds. We have a lot to be thankful for, this is true. I also know that I can find comfort in God. But when you have watched a loved one go through the treatment, you still fear the unknown. It would be much easier if they could do the PET right away but alas that is not possible.

My prayers and thoughts are with you both.

God's Peace,

Debbie

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

Actually, we go for our 3 month pet this Friday. Thank god! If it wasn't scheduled we would be going to the ENT for a scope, trust me on that!

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

He might be having some anxiety adding to the situation. I know that I'm always a lot more apprehensive just before a scan....

And more than likely, this early out nothing is going on, but the PET should confirm that.

Thoughts and Prayers,
John

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

I hope it's anxiety. I think he is kinda scared. He would NEVER lead me to think that. I stress enough on my own.. LOL

KDDavis
Posts: 34
Joined: May 2011

Last Friday, Aug 19th, marked my 12 weeks since my last rad treatment. My ENT told me that I should begin to see rapid improvements beginning around week 12. Another person I know who happens to be a cardiologist that had the same type of cancer I have (hopefully had by now!!) (tonsil cancer) told me that he was feeling his worst at week 8. Perhaps you will soon begin to see some improvement. I am seeing improvement but I still have pain in my throat. It seems to move around. Best wishes for better days ahead!

KareGiver
Posts: 290
Joined: Apr 2011

And hope things went well at your appointment. Waiting for good news!

elwoodsinoakdale's picture
elwoodsinoakdale
Posts: 67
Joined: Apr 2011

Thinking of you today, good news today

Linda

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