Return of the turkey neck
Comments
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Lymphedema and achy shoulders/neck
Is anyone else experiencing lymphedema in their neck that just won't go away along with achy shoulders? My husband is 6 months post radiation and chemo for SCC of the tongue. He has seen the lymphedema therapist and she seems to be able to get his "turkey neck" down, but if he does any physical activity, it comes right back. He even got a special (very expensive) vest and headpiece to wear that pumps air all the way up his chest and face... still not helping the lymphedema. I have watched "how to" videos on how to massage the neck, and we do try that... I guess I just don't have that magic touch.
Every morning, he says his neck and shoulders are killing him. I was hoping that at 6 months out, he would be starting to be feeling better, but that doesn't seem to be the case. We see the doctor next week, so I am going to be sure to put this on my long list of concerns..
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My lymphodemia comes and goes
My lymphodemia comes and goes. Much smaller than when I started, but it seems to expand to meet its needs. Mine is now not a loose turkey waddle but a pretty solid mass (unless it expands, then it gets looser). Wearing my head harness reduces it for a while, day or two max. No problems with shoulder pain.
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Turkey Neck
Im also almost 6 months out and im still dealing with lyphodemia,it doesnt seem to matter what i do.I do the neck massages to the best of my ability but it doesnt do any good.I dont have any pain so im thankful for that.Matt you said the turkey neck is forever,im sure i can deal with that.What ive been wondering about do you feel your as healthy as you were before you took the journey through hell. Dennis
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DFK, I think "it depends".
DFK, I think "it depends". For the kids (a.k.a. anyone under 50) I think they probably get back to around 99-100%. For us more mature types I think we find a new normal. I get healthier daily, but some things seem likely to be permanently gone. At 65, it was probably time for me to give up stupid addrenaline activities anyway. Spending a year not planning new hardcore adventures is actually turning out to be rather pleasant, and I've got a mountain of things that I've neglected in the past while I played with new toys or activities. My house and grounds have needed attention for years. My wife concluded I was an idiot years ago, but she's willing to consider some of the things I've been coming up with lately.
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Lymphedema
Andy- My husband did not have any lymph nodes removed. I believe the lymphedema therapist said the damage to the lymph glands was caused by the radiation to the neck.
Dennis- My husband is turning 60 this month, and he definitely does not feel as healthy as he did before his journey to hell and back. He did not have a peg tube and lost 90 pounds, so I am sure that has something to do with his health. He lost all of his muscle and is struggling to get any of it back.
He also is still struggling terribly with eating. He has a very short list of what he can eat. Some of it has to do with taste (or lack of), texture, and ability to get things down. He is going for a second swallow study on Monday. My daughter, who is a speech therapist, believes my husband can eat anything he wants. She said he is "self limiting" and needs to work through it. (She actually thinks he needs to be on meds, so that question is added to my list for the dr. on Monday.)
I agree with Another Survivor in saying one has to find a new normal. One day my husband says he is feels like he is taking a step forward, and the next day he takes a step back. I guess "one day at a time" becomes the new mantra.
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RSPrsp said:Lymphedema
Andy- My husband did not have any lymph nodes removed. I believe the lymphedema therapist said the damage to the lymph glands was caused by the radiation to the neck.
Dennis- My husband is turning 60 this month, and he definitely does not feel as healthy as he did before his journey to hell and back. He did not have a peg tube and lost 90 pounds, so I am sure that has something to do with his health. He lost all of his muscle and is struggling to get any of it back.
He also is still struggling terribly with eating. He has a very short list of what he can eat. Some of it has to do with taste (or lack of), texture, and ability to get things down. He is going for a second swallow study on Monday. My daughter, who is a speech therapist, believes my husband can eat anything he wants. She said he is "self limiting" and needs to work through it. (She actually thinks he needs to be on meds, so that question is added to my list for the dr. on Monday.)
I agree with Another Survivor in saying one has to find a new normal. One day my husband says he is feels like he is taking a step forward, and the next day he takes a step back. I guess "one day at a time" becomes the new mantra.
How far post treatment is your husband? We are having many of the same struggles with. It is slowly improving. My husband still has his PEG. If it was not for putting VHC BOOST in his PEG I don't think he would have made it through. He is still mostly PEG dependent. I understand your daughters concern but living with my husband through this ordeal, I truly think the difficulties with eating are more complex than I could ever have imagined. My husband wants to be compliant with meeting the nutrition benchmarks but there are numerous factors, I never understood, that make it hard for him. We have found our dietician at the Cancer Center to be a lifesaver. Literally. She's also helped me understand the complexity of the issue post treatment. I firmly believe my husband will get the PEG out and return to eating but it will never be the same as before this ugly disease ravaged his body. That said, I believe he can adjust in time to what is going to be his new normal. Sending positive thoughts your way. It is a hard road for the caregivers and the patients.
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Struggles
soonermom- My husband finished his treatments right before Christmas, so he is 7 months out. He did not have a peg tube and lost 90 pounds. He has a swallow study on Monday, gives blood, and sees the cancer dr (all in one day). I have so many questions to ask. I will let you know if I find out any good info.
While I know everyone who has gone through this had a terrible battle, it seems like my husband is among those who "just doesn't seem to be getting over that hump of getting better." I get on this site every night and try to read every new email. While I am so happy for those that are posting their wonderful progress, I question why my husband still has so many struggles. I know everyone is different, but after 7 months, I thought he would feel better.
My husband sounds like yours in that I had to be the "voice" that kept everything straight. Throughout treatment, I was the one documenting everything, bringing up questions, keeping medications straight, etc. In fact, we are on the 4th notebook used for writing down medications and food intake. I am in no way complaining, just stating that my husband was in no condition to get through this without help. In fact, we met several men while sitting in the waiting room waiting for radiation who were single and in this journey by themselves. I, to this day, think of them and wonder how in the world they made it through...
My husband still takes 9 Gabapenten a day as well as pain meds. We, ourselves, had to ween him off of the pain meds. I feel the hospital/dr. did not do a good job at all in monitoring the drug situation. Up until month 6, my husband was taking dilaudid every several hours. He is the one who said to me, "I need to get off of this stuff." I agreed, and we slowly ramped down the pain meds. He is now down to taking 1/2 dilaudid in the morning and 1/2 at night. Getting off of the Gabapenten is a question I have for the dr. on Monday.
The lymphedema is a daily struggle. My husband saw a lymphedema therapist about 6 times, and then got fitted for a very expensive new "lymphedema vest/head piece" that he wears for 32 minutes every night. It is not working the way he was hoping it would. I also wrap his neck several times a week like the lymphedema therapist showed us.
He wakes up every morning with terrible aches and pains in his neck and shoulders. His dry mouth is continuous. He uses Stoppers4 and carries a water bottle everywhere. In fact, I think I am going to invest in a YETTI bottle for him since I think him needing to carry water will be something very long term.
His weight is what I worry about the most. He started at 256 and just got on the scale today at 166... He is 6', so he looks like a string bean. Someone showed him a picture of us from a few years ago and it really choked him up. That is another thing... emotions... they are all over the place. Anger, stress, sadness... Yet another question I have for the dr. on Monday.
Sorry for going on and on, but just wanted you to know you are not alone. We are all climbing this mountain together. I am so thankful for this site. I have learned so much, and feel like I have made so many friends.
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Similar strugglesrsp said:Struggles
soonermom- My husband finished his treatments right before Christmas, so he is 7 months out. He did not have a peg tube and lost 90 pounds. He has a swallow study on Monday, gives blood, and sees the cancer dr (all in one day). I have so many questions to ask. I will let you know if I find out any good info.
While I know everyone who has gone through this had a terrible battle, it seems like my husband is among those who "just doesn't seem to be getting over that hump of getting better." I get on this site every night and try to read every new email. While I am so happy for those that are posting their wonderful progress, I question why my husband still has so many struggles. I know everyone is different, but after 7 months, I thought he would feel better.
My husband sounds like yours in that I had to be the "voice" that kept everything straight. Throughout treatment, I was the one documenting everything, bringing up questions, keeping medications straight, etc. In fact, we are on the 4th notebook used for writing down medications and food intake. I am in no way complaining, just stating that my husband was in no condition to get through this without help. In fact, we met several men while sitting in the waiting room waiting for radiation who were single and in this journey by themselves. I, to this day, think of them and wonder how in the world they made it through...
My husband still takes 9 Gabapenten a day as well as pain meds. We, ourselves, had to ween him off of the pain meds. I feel the hospital/dr. did not do a good job at all in monitoring the drug situation. Up until month 6, my husband was taking dilaudid every several hours. He is the one who said to me, "I need to get off of this stuff." I agreed, and we slowly ramped down the pain meds. He is now down to taking 1/2 dilaudid in the morning and 1/2 at night. Getting off of the Gabapenten is a question I have for the dr. on Monday.
The lymphedema is a daily struggle. My husband saw a lymphedema therapist about 6 times, and then got fitted for a very expensive new "lymphedema vest/head piece" that he wears for 32 minutes every night. It is not working the way he was hoping it would. I also wrap his neck several times a week like the lymphedema therapist showed us.
He wakes up every morning with terrible aches and pains in his neck and shoulders. His dry mouth is continuous. He uses Stoppers4 and carries a water bottle everywhere. In fact, I think I am going to invest in a YETTI bottle for him since I think him needing to carry water will be something very long term.
His weight is what I worry about the most. He started at 256 and just got on the scale today at 166... He is 6', so he looks like a string bean. Someone showed him a picture of us from a few years ago and it really choked him up. That is another thing... emotions... they are all over the place. Anger, stress, sadness... Yet another question I have for the dr. on Monday.
Sorry for going on and on, but just wanted you to know you are not alone. We are all climbing this mountain together. I am so thankful for this site. I have learned so much, and feel like I have made so many friends.
I am 8 months out from treatment of HPV related tonsil cancer. I go to this site to read and learn from all the great people on here. I also struggle with eating, weight lose, neck issues, dry mouth and pains. I have been off any meds for 3 months. I told my doctor no more. After reading your story we all have the same struggles and no one can really understand our issues except our special group and thier caretakers. And we are a special group of people. We have survived something that not too long ago was a signed death warrant. I am 59 years old and lost 50 lbs and cant seem to gain it back. No muscle mass anymore. But I am slowing getting better everyday and your husband will as well. Time moves slow for us but it still is moving and that is good. Caretakers take the blunt of all of our pains it seems. I wear my neck and vest massage machine as well and it seems to help. The one thing is we can lean on each other and we will prevail. I am marrying my caretaker next month so life begins again. Good luck to you guys.
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sounds normalrsp said:Struggles
soonermom- My husband finished his treatments right before Christmas, so he is 7 months out. He did not have a peg tube and lost 90 pounds. He has a swallow study on Monday, gives blood, and sees the cancer dr (all in one day). I have so many questions to ask. I will let you know if I find out any good info.
While I know everyone who has gone through this had a terrible battle, it seems like my husband is among those who "just doesn't seem to be getting over that hump of getting better." I get on this site every night and try to read every new email. While I am so happy for those that are posting their wonderful progress, I question why my husband still has so many struggles. I know everyone is different, but after 7 months, I thought he would feel better.
My husband sounds like yours in that I had to be the "voice" that kept everything straight. Throughout treatment, I was the one documenting everything, bringing up questions, keeping medications straight, etc. In fact, we are on the 4th notebook used for writing down medications and food intake. I am in no way complaining, just stating that my husband was in no condition to get through this without help. In fact, we met several men while sitting in the waiting room waiting for radiation who were single and in this journey by themselves. I, to this day, think of them and wonder how in the world they made it through...
My husband still takes 9 Gabapenten a day as well as pain meds. We, ourselves, had to ween him off of the pain meds. I feel the hospital/dr. did not do a good job at all in monitoring the drug situation. Up until month 6, my husband was taking dilaudid every several hours. He is the one who said to me, "I need to get off of this stuff." I agreed, and we slowly ramped down the pain meds. He is now down to taking 1/2 dilaudid in the morning and 1/2 at night. Getting off of the Gabapenten is a question I have for the dr. on Monday.
The lymphedema is a daily struggle. My husband saw a lymphedema therapist about 6 times, and then got fitted for a very expensive new "lymphedema vest/head piece" that he wears for 32 minutes every night. It is not working the way he was hoping it would. I also wrap his neck several times a week like the lymphedema therapist showed us.
He wakes up every morning with terrible aches and pains in his neck and shoulders. His dry mouth is continuous. He uses Stoppers4 and carries a water bottle everywhere. In fact, I think I am going to invest in a YETTI bottle for him since I think him needing to carry water will be something very long term.
His weight is what I worry about the most. He started at 256 and just got on the scale today at 166... He is 6', so he looks like a string bean. Someone showed him a picture of us from a few years ago and it really choked him up. That is another thing... emotions... they are all over the place. Anger, stress, sadness... Yet another question I have for the dr. on Monday.
Sorry for going on and on, but just wanted you to know you are not alone. We are all climbing this mountain together. I am so thankful for this site. I have learned so much, and feel like I have made so many friends.
rsp,
I did not get back to eating normal for 7 months. The awful texture and taste, no taste had me drinking mainly smoothies. There were some bright spots, I loved tomatoes, cucumbers and olive oil and I was always trying every food I came across. I ate Sunday dinners with my parents (1 bite of chicken, 1 spoon of mashed potatoes, 1 spoon of peas, etc,). Then one day, after 7 months I was on a job and had to order out and a turkey sandwich tasted great, the battle had ended as my taste buds came back on line. Ta da.
Your husband needs to find what works for him. I traveled around with a little Igloo Cooler full of dinks, it worked for me and I was happy. I want you to be happy too.
Matt
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