Treatment done - Feel worse!

Suez39

Hi everyone.

Sorry it's been awhile since I posted. In and out of the hospital. Feeding tube fell out dehydration severe nausea. My treatment ended last Monday but my wonderful radiation team failed to tell me that the next 3 weeks post treatment are the worse. I have more mucuos nausea and dizziness than I did before! What a shocker to me! They said 3 weeks and I'm just over my 1st wk past treatment. Can't walk far or else I will gall. Dizziness and radiation side effect. Really feel like I'm slowly dying most of the time. Did anyone go through this post treatment brutal side effects? Nurse told me all the radiation combines itself and hits you. It leaves your body at a slow pace. Was angry cause they should of communicated this to me Before I started to go through it. Sorry if I feel like I'm complaining. Just can't seem to shake or fight hard enough just to feel alittle comfortable. Well on a brighter note hope all of you are doing better and had a nice holiday. Hugs to you!!

debbiel0

Hang in there Sue!

Hang in there Sue!

I also had a naive sense that once treatment was over, I would be better right away. I was not prepared for the post treatment side effects.

I was ok the first few days, but then all the wheels fell off my bus! Some days it was all I could do to hit the shower. Then I would have to have a nap to recover before I could get dressed.

  I can relate to your frustration. I was not warned either.

Please don't fall into the self doubt pool. It is very difficult to get through this stage and if you need to just sleep, then do it.  I hope you have a great support group at home. Stay on top of your hydration.  I learnt that lesson the hard way, having two extented stays in the hospital to get me on track.

You really have made it through the important part. Your body is going to do what it needs to, whether you like it or not, so try to relax and let your body do this part of the fight. I know all to well how hard this is.

I hope you have sunshine in your corner of the world today.

 

Deb

soonermom

Post treatment recovery

I knew from reading a variety of Oral Cancer forums that what you are describing was a possibility.  My husband never read what I did.  I did ask some questions at the Cancer Center about possibilites.  I will tell you as a caregiver I refrained from saying too much to my husband about what I read and learned because it was clear it did not happen to everyone and I did not want to be negative or add to the struggle he was already having every day by piling on with more things that might not even happen to him.  Patients seem to have a range of responses to recovery.  I found the Cancer Center staff was forthcoming if I asked direct questions.  Hang in there.  My husband had a very rough post recovery path but now more than a year after treatment ended, he is doing great!  We did say his recovery seemed to move at the speed of a glacier before global warming but he did see slow but steady improvement starting about 3 months post treatment.  Stay strong! 

Nnk

It will get better

Yes they shoudl have told you.  I know it sounds simple but it will get better.  As Soonermom said everyone is different. 

 Recovery for me has been very slow but those weeks after radiation and chemo were easily the worst despite having a challenging surgery recovery.    I am 8 weeks out I ask my wife all the time if I felt this bad last week.  This is where the journal is good to keep.  Try to make eating and sleeping your full time job. 

 

  

 

 

wbcgaruss

I was told

Unlike you I was told by my nurse navigator, chemo team, and especially my Rad Nurse that is is a rough road of treatment.

Rad Nurse told me I might as well figure a year of my life dealing with my cancer situation till I get treatment and go through

recovery etc.

She was pretty much on till you consider diagnosis, treatment, recovery it take awhile but of course all our situations vary.

I will say though with all the advice i got about rough recovery I did not think it would be that tough to go through but it was.

Nothing really prepares you for it and once you are going through it I now had the realization of what they were telling me.

It definitely beat me up when it started settling in on me. You may be very tired I was so do what you can and sleep and rest

as necessary even if it seems like a lot but don't give in to just sittin around push yourself to do small things at least for awhile.

It will get better and you will be able to do a little more each week as you recover but recovery is Slow this is not a fast process

so be patient with yourself and your situation, trust in God to get you through this.

I also had a lot of phlegm  from the radiation and was gagging it up all the time and it seemed nightime was sometimes the worst.

Use the saltwater baking soda rinse and use it a lot to stay ahead of it.

I moved a recliner from the basement and slept on that because I could not lay down anymore because of it.

Also soon got to the point where i could not swallow anything-everything had to go through the peg tube including pills I had to take

that did not have a liquid replacement we bought a handheld plastic pill grinder at CVS and mixed them with water and in the tube they went.

So in closing it can be rough but push through each day, pray a bit, rest a lot but stay active as possible and Never Ever give Up.

Best of luck to you and Prayers your way.

 

BetsyW

You can make it!

Sue, you will get through this. The two weeks post-treatment are terrible. I also stayed in the bed a lot and slept. I also was not afraid to take pain meds to get through it and had medical marijuana -- all beneficial. If you are dehydrated, ask your doctor to prescribe hydration sessions (where I am they are given in the same infusion clinic as the chemo). I had those three times weekly (plus the chemo), so I stayed pretty hydrated and it was extremely helpful. It will pass. I completed treatments May 3. I was on a very mild steriod the last two weeks of treatment and into the first week post and also on medication to help with that horrible phlegm and mucous (I took my last pill yesterday so we'll see how it goes this week). Last week, I went on a six-day steriod pack and felt great -- but now all of that is done and I would imagine there will be a slight crash from coming off the steroids. Taste comes and goes and I'm still on liquids, but expect to move to soft foods in the next week or so, hopefully. It gets better, but it takes a lot longer than we expect. You can do it!!

patricke

MARATHON

Oh, Suez, I feel your pain!  I remember all too well the aftermath of my delightful radiation treatment in the dungeon of daemons.  Yeah, it will feel horrible for awhile, but I assure you that in time you will indeed, feel better, as your recovery progresses. What I learned in my recovery is that it is a marathon, not a sprint, so the operative word for recovery is.....patience. With that in mind, it is important to pace yourself, and take it one day, hour, minute, second, nanosecond at a time. I would love to tell, and assure you that you'll feel better in a minute or two, but then I would be a bald faced liar (so mostashed and bearded folks are the truth tellers).  In my early recovery I truly believed that I would never be able to get back to enjoying life again, but most gratefully, I was very wrong.  What you are go'in through absolutely sucks, but there's no get'in around it; you have to go through it. Thus, I encourage you, to the max, to hang in there, and keep your eyes on the prize; in time (another operative word) you will begin to feel more better and less worse.  I have enclosed huge quantities of positive energy, thoughts and hope. Last thought:  my mantra during my various bouts through the gauntlets, and now and then these days when necessary, is: "I Can Do This!," and so can you!  Keep It Mov'in Forward Suez, You Can Do This!     

Patrick

donfoo

wish you well

Now, you know, you can deal with the situation. Everyone is different but you know you've still got some rough road ahead. It does get better, so just take each day as it comes. Wishing you feel better soon. don

phillyboy

10 months post radiation for

10 months post radiation for squamous neck cancer. Still no taste or saliva. Off peg tube 2 months ago. I have bad allergies and because of dry mouth am unable to take antihistamines or decongestants. Real misery. Xylemelts do help. No desire to eat but am forcing food eating. I do feel better physically and my leg and walking pain has gone. The rest of you who advise patience I thank you for your experience and hope all of you beat this monster permanently.

Clon

Post treatment was the worse

I was warned that the three weeks post treatment would be worse than the weeks I was going through treatment, but it was worse than I had expected.  At two weeks post treatment I was hospitalized for a week from complications of both chemo and radiation.  My mantra during this time was, it's only temporary!  I was tired all the time and had to nap several times a day, and sleeping was all done sitting up. In the beginning I would go through treatment one day at a time.  At the end, I was getting by one moment at a time.  It really does get hard at times.  

I also had three hydration treatments every week through my port.  I hated the drive to get there but it really did make a big difference.  The biggest thing is to push through it.  I am not quite one year out of treatment and I have gone back to work, I have put my weight back on (but eating still sucks) and have much more energy.  Esentially, I have my life back.  As bad as it gets, when you finally recover life will be better than it ever was before because you have a second chance at life.  Hang in there and you will beat this!

amal243

massage for people with cancer

There's been an awful lot of disparaging remarks made here lately, regarding the value of "alternative" medicine when dealing with cancer.  I find that sort of attitude less than helpful, and well into an actual harmful direction, for those that can use the help.

Please read at the links provided concerning this topic of "Is massage safe for people with cancer? "

Massage and cancer key questions

Everything you need to know about massage

Why do people with cancer use massage?

As well as improving physical symptoms, some people with cancer say that having a massage:

 

makes them feel whole again

helps them to relax

helps them share feelings in an informal setting

makes them feel more positive about their body

rebuilds hope.

Research shows that massage of muscle and soft tissue does not spread cancer cells.

Darkdancer333

I am starting 4th week post

I am starting 4th week post rad and my problem is the mucus... I acually feel pretty good. But i can thank my wife for the water for hydration. and the three feedings of boost which totals 2200 calories a day. you will be better soon.. Yes the feeding tube sux but it saved my butt....

Kathryn in Houston

Five years post throat cancer treatment

I am here 5 years after that horrible treatment to tell you that it will get better. I was convinced I would not get better as it seemed to take forever. I went through all of it ALONE. I had very little help. I'm only telling you that part to show you how horrible it was for me. I had to go back to work after 3 months which was really a blessing as it made me get up and get after it. For a long time I felt horrible. I lost 76 lbs. in 3 mo. Thank GOD I was fat. LOL! Food is your MEDICINE. You must eat. Period. I know you don't feel like it but it IS the only thing that will help you feel better. Once you regain your strength then exercise is the ONLY thing that helps thereafter. There is no easy way to get through this. For me, it was 5 minutes at a time. Not 1 day at a time. Take the pain meds. I was afraid of becoming addicted to them. M.D. Anderson explained it this way. When you are in pain, you have receptors that reach out for relief. When they find the meds it works. Its when you dont have those receptors reaching out and you feed them anyway that you become addicted. Drink water out the kazoo. Its so important to your body right now. I did find something that hydrated me, seriously made me feel better and took the dry mouth away and that is coconut water. It actually works. It took the dry mouth away!!! It is an acquired taste. You may not like it at first but keep drinking it. It works better than water! It's amazing! I too slept in a recliner. It helped. I was very, VERY, VERY weak but the more I moved the stronger I became. The dizziness DOES GO AWAY. It takes awhile. Just when I thought it was permanent, poof, it went away. I felt like i was slowly dying too but I wasn't. Your body just went through pure HELL! I don't think they tell us about all of this for all sorts of reasons. I wondered about it too. Maybe we wouldn't have done it. Maybe it would make it worse. Who knows. MD Anderson told me (after the fact) it is the most brutal treatment out there because of where the treatment is located. I believe it. Get the nausea pills that melt under your tongue. They are awesome and work instantly. My insurance declined them at first but the DR. himself called and got them approved. Its ok to complain about it. Really! I'm not one who likes to listen to complainers or negative people but youve earned it. Go easy on yourself. You wont feel better overnight. I kept asking.... When? When will I feel better? How long is it gonna take? I never felt worse in my life. It takes time and I look back now and think... Wow that was fast. Like I said its been 5 yrs. next month for me. I never got back ANY energy OR strength till I started pilates. Pilates was designed for those with injuries/illnesses and need recuperation. 90% of it is done lying on your back and its designed to build up strength and endurance. When you feel better and you will believe it or not, check it out. It is the ONLY thing that helped me get any strength back at all. The other thing that is affected is your thyroid which controls your internal temperature. Radiation killed mine. I'm always opposite of everyone else. I froze for the first 2 yrs. I already had low thyroid levels. They had to more than double the dosage. Ask them about that cuz that alone will make you feel like crap with no energy. I hope this helps you. Really I do!!! Reach out and let us know how you progress. Believe it or not, this is the first time I've gotten in on these discussions cuz I was afraid of what I might find but I found out I'm normal. We all had the same symptoms. That alone makes me feel better. Good luck and Godspeed! This picture was take of me about 5 months after treatment ended. I looked ok but felt like crap. I feel lots better now and you will too! One more thing... Carnation Instant Breakfast is soooooooooooo much better than Boost. Not the canned liquid. Get the powder and mix it with milk. Yes I know - mucus - but I found Boost to be gross! I did refuse the feeding tube. I think that's why I lost so much weight but I just could not handle that and I wanted to lose weight. Stupid... I know!

Kathryn in Houston

phillyboy said:

10 months post radiation for

10 months post radiation for squamous neck cancer. Still no taste or saliva. Off peg tube 2 months ago. I have bad allergies and because of dry mouth am unable to take antihistamines or decongestants. Real misery. Xylemelts do help. No desire to eat but am forcing food eating. I do feel better physically and my leg and walking pain has gone. The rest of you who advise patience I thank you for your experience and hope all of you beat this monster permanently.

Taste and saliva do come back

Taste and saliva do come back ever so slowly. Don't lose faith. Try coconut water. OMG it worked for me and took that nasty and dry mouth away.

Hope this helps you.