When does it get better
Linda
Comments
-
Not long now
Hi Linda. I can't remember the exact time but I know it is muuuuch better now. Tastebuds started returning 3 weeks after end of treatment. It's now been 17 months since I finished tx for tonsil scc 1 lymph node. Savoury is back completely sweet very minimal but there is something there. Saliva is good enough to eat bread but not potato chips without a drink. Your hubby may still be experiencing the sadness of being faced with you own mortality. Not a good place. This too gets muuuuch better as time goes on. Each luxury that I lost from treatment did slowly get better. I see a naturopath that keeps me monitored and confirms that my cells and immune system are healthy. I juiced everyday and still take a small amount of vitamins. I don't know whether these help really. I just know it makes me feel like I am back in control of my body.
If you asked 100 people how long you would get 100 diffrent answers. I 100percent believe state of mind is huge and critical to a full recovery. My husband was very sad and felt so sorry for me in the beginning and then he stopped. Which was a really great thing for me as it made me snap out of my pity party for myself. He doesn't talk about it at all but if I need to talk he is willing to listen and remind me that the prognosis for survival is very good. I occassionally have little dark thoughts but as quick s they come they are gone. Whereas before they would consume my whole day.
I'm not sure if this is of any help but this is just a snippet of my experience of something I only thought happened to other people. I know you hubby will get better. We all do. He just has to believe he has a future
love and support to you both Jen xxxx0 -
Thankspascotty said:Not long now
Hi Linda. I can't remember the exact time but I know it is muuuuch better now. Tastebuds started returning 3 weeks after end of treatment. It's now been 17 months since I finished tx for tonsil scc 1 lymph node. Savoury is back completely sweet very minimal but there is something there. Saliva is good enough to eat bread but not potato chips without a drink. Your hubby may still be experiencing the sadness of being faced with you own mortality. Not a good place. This too gets muuuuch better as time goes on. Each luxury that I lost from treatment did slowly get better. I see a naturopath that keeps me monitored and confirms that my cells and immune system are healthy. I juiced everyday and still take a small amount of vitamins. I don't know whether these help really. I just know it makes me feel like I am back in control of my body.
If you asked 100 people how long you would get 100 diffrent answers. I 100percent believe state of mind is huge and critical to a full recovery. My husband was very sad and felt so sorry for me in the beginning and then he stopped. Which was a really great thing for me as it made me snap out of my pity party for myself. He doesn't talk about it at all but if I need to talk he is willing to listen and remind me that the prognosis for survival is very good. I occassionally have little dark thoughts but as quick s they come they are gone. Whereas before they would consume my whole day.
I'm not sure if this is of any help but this is just a snippet of my experience of something I only thought happened to other people. I know you hubby will get better. We all do. He just has to believe he has a future
love and support to you both Jen xxxx
Thanks Jen, he just feel sick, he has days that he feels great, then for two or three days he feels like crap, and sleeps. He had his pet scan and they said the tonsil was clear and the node was clear, but he still has a spot that lite up in his face. When he was first dignosed they took a cat scan and saw the node, but then when they took a pet they saw a red spot in his face under tj cheek bone also. Ent and chemo doc think this is a false reading, well it shows up again in newest pet scan, so rad doc wants to have a cat scan, I feel this brought him down, and now he is feels like his cancer might be back. I am telling him about the false readings and the hot spots from being to soon after treatment, lets pray I am right. I think he is going to be fine, he just needs to gain weight, he lost all of his muscles, he got real sick at the end of treatment, bad sores in mouth, low counts and ended up in the hospital for 9 days. He did not have a feeding tube, so I think he is doing good for what he went through, lets just pray the cancer is gone. Glad to hear you are doing so good, this give me hope.
Linda0 -
How long
It takes a long time I had my last Rad treatment Jan 2010 I still have a hard time eating and swallowing dry mouth is still bad It gets better but it's slow I had a feeding tube for 7 months and had to learn how to chew and swallow. Just don't give up I have good day's and bad ones.
Robert0 -
Cant Waitrobert77dr said:How long
It takes a long time I had my last Rad treatment Jan 2010 I still have a hard time eating and swallowing dry mouth is still bad It gets better but it's slow I had a feeding tube for 7 months and had to learn how to chew and swallow. Just don't give up I have good day's and bad ones.
Robert
I can't wait until he feels well again, I feel so sorry for him, I know he hurts, and wants to feel ok again, I am so glad I can talk to people on here.
Linda0 -
ME too-can't waitelwoodsinoakdale said:Cant Wait
I can't wait until he feels well again, I feel so sorry for him, I know he hurts, and wants to feel ok again, I am so glad I can talk to people on here.
Linda
Hi Linda,
My husband-exact same thing. He has just passed 4 months now and just this week we have seen some progress where he no longer needs long naps and is allowing himself to be a little distracted by things other than his recurrent pain, exhaustion and lousy relationship with food. However, the black cloud still lingers since he will be going in for a biopsy on some suspicious necrosis at the back of his throat.I think the constant threat of recurrence and daily discomfort just wears them down. A few weeks ago, I made a decision not to treat him like an invalid anymore and take him out for walks, drives in the country,short visits with cherished friends and I think it has helped his depression to engage in some normal activities again. I think, for all of us, until we get NED or a resolution to the latest issue, it may be difficult to enjoy life as before but don't underestimate the power of distractions.His best days are when we escape the prison of our house to go whale watching or sunset walks. Yes, he is usually a mess for a day or two after these excursions but at least, for a time, we are not thinking or talking about C. I don't show him my anxiety and pain. He has enough to deal with without adding a burden of guilt. I tease him about the chicken neck and chipmunk cheeks and make him ridiculous hats and hope that even for a very few moments, he is distracted from thinking about the elephant in the room.Like I keep saying, someday, you will NOT look back at this. Don't be discouraged. As caregivers we can't afford to be discouraged.Just hug him a lot and know that every day, there will be some tiny progress, barely perceptible, but there nonetheless.You WILL get there and this is such a good site to vent in isn't it?
Positive vibes headed your way!
W.0 -
Hi againwaywest said:ME too-can't wait
Hi Linda,
My husband-exact same thing. He has just passed 4 months now and just this week we have seen some progress where he no longer needs long naps and is allowing himself to be a little distracted by things other than his recurrent pain, exhaustion and lousy relationship with food. However, the black cloud still lingers since he will be going in for a biopsy on some suspicious necrosis at the back of his throat.I think the constant threat of recurrence and daily discomfort just wears them down. A few weeks ago, I made a decision not to treat him like an invalid anymore and take him out for walks, drives in the country,short visits with cherished friends and I think it has helped his depression to engage in some normal activities again. I think, for all of us, until we get NED or a resolution to the latest issue, it may be difficult to enjoy life as before but don't underestimate the power of distractions.His best days are when we escape the prison of our house to go whale watching or sunset walks. Yes, he is usually a mess for a day or two after these excursions but at least, for a time, we are not thinking or talking about C. I don't show him my anxiety and pain. He has enough to deal with without adding a burden of guilt. I tease him about the chicken neck and chipmunk cheeks and make him ridiculous hats and hope that even for a very few moments, he is distracted from thinking about the elephant in the room.Like I keep saying, someday, you will NOT look back at this. Don't be discouraged. As caregivers we can't afford to be discouraged.Just hug him a lot and know that every day, there will be some tiny progress, barely perceptible, but there nonetheless.You WILL get there and this is such a good site to vent in isn't it?
Positive vibes headed your way!
W.
Hi Linda. I do remember being very weak and extremely dehydrated. Just one night in hospital. I worked everyday but was very tired at nights and spent a lot of time curled up on the lounge and really had to push myself if I had to go out then couldn't wait to get home so I could lay down. This lasted about six months. Feeling tired to your bones is a strange feeling. It's a real fatigue feeling you can't get away from. But that's all gone now. It's funny because a lot of it I can't remember now. Bit like childbirth. Remember it was painful but really hard to explain. Love Jen xxx0 -
Hi Linda
It takes time but he will get to where he is feeling better again, just needs time for all the crap he had been through to ware off. Also you might want to have his doctor start checking his blood to see if he is lacking anything there and also the Thyroid. Make sure he is drinking a lot of fluids as he need to keep hydrated, this also helps the body to clean it self of toxin from all the treatment.
Wishing you both the best
Hondo0 -
juicepascotty said:Not long now
Hi Linda. I can't remember the exact time but I know it is muuuuch better now. Tastebuds started returning 3 weeks after end of treatment. It's now been 17 months since I finished tx for tonsil scc 1 lymph node. Savoury is back completely sweet very minimal but there is something there. Saliva is good enough to eat bread but not potato chips without a drink. Your hubby may still be experiencing the sadness of being faced with you own mortality. Not a good place. This too gets muuuuch better as time goes on. Each luxury that I lost from treatment did slowly get better. I see a naturopath that keeps me monitored and confirms that my cells and immune system are healthy. I juiced everyday and still take a small amount of vitamins. I don't know whether these help really. I just know it makes me feel like I am back in control of my body.
If you asked 100 people how long you would get 100 diffrent answers. I 100percent believe state of mind is huge and critical to a full recovery. My husband was very sad and felt so sorry for me in the beginning and then he stopped. Which was a really great thing for me as it made me snap out of my pity party for myself. He doesn't talk about it at all but if I need to talk he is willing to listen and remind me that the prognosis for survival is very good. I occassionally have little dark thoughts but as quick s they come they are gone. Whereas before they would consume my whole day.
I'm not sure if this is of any help but this is just a snippet of my experience of something I only thought happened to other people. I know you hubby will get better. We all do. He just has to believe he has a future
love and support to you both Jen xxxx
Jen, I want to start my husband on fresh juice but do not know what juices to give him. Can you suggest any combos that sit well on the tummy?
Debbie0 -
Will DoHondo said:Hi Linda
It takes time but he will get to where he is feeling better again, just needs time for all the crap he had been through to ware off. Also you might want to have his doctor start checking his blood to see if he is lacking anything there and also the Thyroid. Make sure he is drinking a lot of fluids as he need to keep hydrated, this also helps the body to clean it self of toxin from all the treatment.
Wishing you both the best
Hondo
Thanks everyone, he sees the doctor next week for blood work, will see if they check the thyroid. Have not heared from the rad doctor about doing the cat scan yet, I feel that the spot in the face is not cancer, so we will see. Thanks for everything, I think I would of been freaking out over the hot spot in the face if I had not read on here about the false readings on the pet scan. Wishing the best for all
Linda0 -
Blood Work, Labs and Reportselwoodsinoakdale said:Will Do
Thanks everyone, he sees the doctor next week for blood work, will see if they check the thyroid. Have not heared from the rad doctor about doing the cat scan yet, I feel that the spot in the face is not cancer, so we will see. Thanks for everything, I think I would of been freaking out over the hot spot in the face if I had not read on here about the false readings on the pet scan. Wishing the best for all
Linda
"he sees the doctor next week for blood work, will see if they check the thyroid."
Just a side note;
I have all of my blood lab work starting from the first before any treatment, each one just before chemo, and all follow-ups to date (two years post treatment). It's a good idea to ask for them and keep them for reference, plus it gives you an idea what's going on in his body....
It took nearly a year post treatment for all of my blood levels to fall back into normal ranges.
BTW, thyroid indicators on the lab sheets are TSH and Free T4, normally they don't test for those unless requested.
Best,
John0 -
It does take time
Hi Linda,
I finished radiation and chemo in December 2010 for my tonsil CA and I am still not back where I want to be physically. I am 53 and had quite a journey after chemo and radiation. Tell Steve that things do get better albeit slowly sometimes (depends on the person here).
I am an impatient one in any case and was hard on myself for not getting better quickly. I have since turned that around and have decided I'll get well when I get well and no amount of mental anguish can hurry it up.
I hope things turn around soon for both of you.
All the best0 -
When does it get better
Buzz started to feel better a little over 2 months post treatment when he could eat again. Could your hubby be suffering from depression? Buzz has had two positive PET scans post-treatment: one spot lit up in the right neck, and on the second scan that same spot was more "active" with a new spot on the tongue. My understanding is that these spots may not be cancer and just "false positives." It is all a waiting game after treatment is done. Karen0 -
post treatmentbuzz99 said:When does it get better
Buzz started to feel better a little over 2 months post treatment when he could eat again. Could your hubby be suffering from depression? Buzz has had two positive PET scans post-treatment: one spot lit up in the right neck, and on the second scan that same spot was more "active" with a new spot on the tongue. My understanding is that these spots may not be cancer and just "false positives." It is all a waiting game after treatment is done. Karen
My husband is approx 18mths post treatment. I remember thinking at 3 month post treatment that I thought he would never begin getting better. Some things you need to think about... he does need to get some physical activity...I began by putting him on the tread mill very slowly... if he doesn't do anything he will continue to be weak. I also have a all natural supplement that gives him 17 servings of Veggies and Fruit a day.. if you are interested in looking into it you can email me vrbrock@yahoo.com do like to push stuff on here... but it sure helped his blood count.
Be patient!
Wife0 -
When does it get better
Hi Linda, It takes a while . I think my husband was pretty weak for a while. His last radiation treatment was end of December and I remember he slept a lot and didn't go back to work for at least 6 months and that was part time. Everyone is different, he will get better, just might be a while. The treatment is rough.
Good luck to you both
Valerie0 -
Three months out
Husband is three months out and sometimes it seems like two steps forward and one step back. Maybe a chart or list system would let him see the accomplishments vs. The setbacks. My husband is going through the healing process but has already started chemo for a metastasis so it is veer hard to keep positive and strong. Best wishes to you both.
Robinleigh0 -
Sorryrobinleigh said:Three months out
Husband is three months out and sometimes it seems like two steps forward and one step back. Maybe a chart or list system would let him see the accomplishments vs. The setbacks. My husband is going through the healing process but has already started chemo for a metastasis so it is veer hard to keep positive and strong. Best wishes to you both.
Robinleigh
Sorry to hear that, have they determined for sure it is mets or a new occurence?
You guys can do it, yes it stinks and I can't even imagine what your going through, nor do I want to.
Just do what you have to do, surround yourself with positive people and draw on that strength.
Thoughts and Prayers,
John0 -
We are with yourobinleigh said:Three months out
Husband is three months out and sometimes it seems like two steps forward and one step back. Maybe a chart or list system would let him see the accomplishments vs. The setbacks. My husband is going through the healing process but has already started chemo for a metastasis so it is veer hard to keep positive and strong. Best wishes to you both.
Robinleigh
It may not be much but remember we are all here with you through this beast, hoping, praying, and wishing you all the healing in the world to get through this dark time in you lives.
Keeping you both in my thoughts
Hondo0 -
For
For me it was over a year till I actually wanted to do something rather than having to do things. It was about 8 months when I began eating and drinking better with less pain and some less naps. The key is for everyone it justdoesnothappen fast enough. As long as it continues to get some better that is what inmost important.
John0 -
For
For me it was over a year till I actually wanted to do something rather than having to do things. It was about 8 months when I began eating and drinking better with less pain and some less naps. The key is for everyone it justdoesnothappen fast enough. As long as it continues to get some better that is what inmost important.
John0 -
Just this last weekfisrpotpe said:For
For me it was over a year till I actually wanted to do something rather than having to do things. It was about 8 months when I began eating and drinking better with less pain and some less naps. The key is for everyone it justdoesnothappen fast enough. As long as it continues to get some better that is what inmost important.
John
I have seen a differnce just this last week, he says he feels better, not sleeping as much and eating a little more. I think when he found out his pet showed something, he was so down, but his chemo doc told him not to worry he belives it is caused from rad, he goes in tuesday to have cat scan, so lets pray chemo doc is right, and I believe he is right. Thanks for all your help, this helps me through these hard times. God Bless
Linda0
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