Scared and appreciative and just plain emotional
Hello all,
I came across this site a few days ago and I must say it has been a positive light I've been searching for. I really have been comforted by the many stories I've read through and the supportive comments I've read others post. It truly seems like a community on here and that is what I've been looking for.
My husband (39) found out on Feb. 17 the lump in his neck was cancer. One week later he had surgery to remove the nodes and robotic surgery to take the original cancer spot on the back of his tongue. (HPV positive, stage IV). Actually, one node, but one so big they recommended 6 weeks of proton beam radiation, which he finished on May 5. That day our two young sons (3 and 5) picked him up he could hardly stand up. He lost around 50 pounds, never had a feeding tube put it, and his neck burns hurt to even look at them. The nurse told me the 2 weeks after radiation was done would be terrible and they were. So disheartening. And then, after week 3, we did see improvement! Slowly. He had lost more weight, but once he gained 3 pounds at his 6 week check-up, the doctor was happy and said many were just trying to maintain at this point. He is now 2 months out from the last treatment and feels a bit depressed. He thought he would feel better and better and now says he feels exhausted and dizzy. I think it's b/c he works nonstop and isn't eating properly. Getting him to eat is such a guessing game. What tastes okay or goes down okay one day doesn't always the next. He's never been a shake drinker and has such a hard time with the Ensure-type drinks. It breaks my heart to see him have to lay down and tell the boys he'll just watch them play. I can't help be scared and worried about my boys not having their dad. Which is how I found this site. And I've read lots of positive posts here and I can't tell you how much hope they give me. He will have his first follow up PET scan next month. (The one they did in Feb. came back clear with only cancer showing up where it was detected). I think after that we may feel like we can take a breath. But for now, we keep the boys happy and busy but I get so overwhelmed and tears just come. I'm wondering if there is a type of "cancer counselor" that could help ease our anxieties. We just bought our perfect country home last year, I am a teacher at a great school, and our boys are our life. I just want normal back so badly.
So, anyway, I appreciate all who've shared their journeys and I continue to read through these posts at night to help me feel better. I have a strong faith in God, but I will admit it doesn't make it easier when I picture our sons not having their dad to teach them to drive.
Thanks for listening.
Comments
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We are all here to help you Tilly
This whole thing is uncertain. Let's look at a few things that are certain. All of you made it through the treatment. The children are still playing. I can imagine they even laugh and smile from time to time. Your husband is back to work, this is something that provides control and normalcy. Men frequently deal with stress and uncertainty much differently than women.
You said the tears come. They do that. They also stop so we can catch a breath once in a while. I find this H&N cancer to be a giant pile of horse manure.
So this is my new mantra:
plant the seed
cover with manure
water with tears
Something is bound to grow.
So as of late I have decided to contemplate seeds. I have stopped thinking about "what if"; only seeds and what I can plant.
Sara
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Feel your pain
Thank you for sharing. I think nutrition is critical to their recovery. Just plain old taking in enough calories and hydration. Your comment about food being tolerable one day and not the next is my life every day. I have joined him on the shake/smoothie and soup diet. I invested in a great blender and I just keep trying something new every day. Plus offering him solid foods every day. I have given up thinking we will get our life back. I am just trying to be thrilled we have a life to share together and make it all it can be. I don't see any other option, sadly. One day at the center we were feleling a little pitiful about our situation when a blind patient came in to the infusion suite. She had cancer and she was blind. I think about her a lot. Plus she was alone. It did not make our journey any less difficult but it did give me some perspective.
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Perspectivesoonermom said:Feel your pain
Thank you for sharing. I think nutrition is critical to their recovery. Just plain old taking in enough calories and hydration. Your comment about food being tolerable one day and not the next is my life every day. I have joined him on the shake/smoothie and soup diet. I invested in a great blender and I just keep trying something new every day. Plus offering him solid foods every day. I have given up thinking we will get our life back. I am just trying to be thrilled we have a life to share together and make it all it can be. I don't see any other option, sadly. One day at the center we were feleling a little pitiful about our situation when a blind patient came in to the infusion suite. She had cancer and she was blind. I think about her a lot. Plus she was alone. It did not make our journey any less difficult but it did give me some perspective.
We got a lot of that while my husband was in treatment. He did quite well and next to him would be a person in a wheelchair who could barely lift their head. And we had to walk by the pediatric cancer ward every week on the way to chemo. It makes you think and puts things into perspective.
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Thanks!Engelsa said:We are all here to help you Tilly
This whole thing is uncertain. Let's look at a few things that are certain. All of you made it through the treatment. The children are still playing. I can imagine they even laugh and smile from time to time. Your husband is back to work, this is something that provides control and normalcy. Men frequently deal with stress and uncertainty much differently than women.
You said the tears come. They do that. They also stop so we can catch a breath once in a while. I find this H&N cancer to be a giant pile of horse manure.
So this is my new mantra:
plant the seed
cover with manure
water with tears
Something is bound to grow.
So as of late I have decided to contemplate seeds. I have stopped thinking about "what if"; only seeds and what I can plant.
Sara
thank you for your analogy! I agree:) and it's good to read this as a reminder!
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Thankssoonermom said:Feel your pain
Thank you for sharing. I think nutrition is critical to their recovery. Just plain old taking in enough calories and hydration. Your comment about food being tolerable one day and not the next is my life every day. I have joined him on the shake/smoothie and soup diet. I invested in a great blender and I just keep trying something new every day. Plus offering him solid foods every day. I have given up thinking we will get our life back. I am just trying to be thrilled we have a life to share together and make it all it can be. I don't see any other option, sadly. One day at the center we were feleling a little pitiful about our situation when a blind patient came in to the infusion suite. She had cancer and she was blind. I think about her a lot. Plus she was alone. It did not make our journey any less difficult but it did give me some perspective.
thank you for this. Very true. I am very thankful for each day, regardless of the ups and downs that occur In that day. Thinking of the alternative can break my heart And sprout the tears. Your perspective example makes a good point. I will think of that, too.
Take care!
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same timeline
almost same timeline to the day as me.
Watching the boys play, is a good thing, at least he's still there for them, but if he needs to rest, thats what he has to do. But, we are STILL HERE, and he sounds a lot like me, he's still fighting, he's still working.
This isn't a sprint to the finish line, its a marathon, you have to stay the course.
If you need to cry, wait till he's at work, and go bury your head in a pillow and bawl. I did. Because telling my 25 y/o son was the worst thing ever.
My nutrition is hit or miss also, Boost is the only thing I can deal with consistently.. strawberry, all others make me gag. So yes, I'm running on a deficit.
Enough of all the sad stuff - WE MADE IT, we got thru treatment and the hellish 3 weeks after! Everything else will come, give it time
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Everyone is different
I followed a similar track to your husband (41 yrs, hpv+ base of tongue, neck disection, TORS surgery, radiation). I'm 2.5 months out and feeling very good. I lost about 20lbs and never really had troubles eating. Everyone is just different in how they respond...it sounds like your husband didn't fair quite as well and has struggled with intake. Food is critically important...The most frustrating thing for me was toward the end of treatments...so hungry yet nothing tasted like anything at all. Food is an extremely emotional thing for most people...when you can't taste or can't eat it can seriously get you down in the dumps.
Fatigue is real...I have pretty much returned to a fully normal existence...busy coaching baseball and never stopped working through treatments and such...but every once in a while I literally will go to bed at 9pm and will be unconcious until morning...I've never needed much sleep and tend to be a night owl. But it catches up with you...we've been through a lot.
I would have a discussion with your nurse coordinator or oncologist about a psychologist/psychiatrist at your cancer center, they will have folks who have experience with this. Not only for your husband, but for yourself. You've shouldered a tremendous amount of weight through this as well.
It will get better!
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Welcome, Tilly
I agree with all the other responses. Your husband has been through a LOT. Recovery does come with time. What you said about taste and ability to swallow is SO TRUE. Try, try, and try again. My husband enjoys tasting foods even if he can't swallow them. With a good blender, milk or broth can make anything into a "smoothie". Hamburgers seem to be popular...
This group is GREAT for support and advice. You may be able to find local cancer support groups. I attended one for a while and it was helpful. They have since opened a hospitality room down the hall from the oncolgists office and it is staffed by cancer survivor volunteers.
Warm hugs for your family,
Crystal
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Welcome
Tilly26,
Welcome to the H&N forum, sorry that you are here, but it sounds like the worst is over (and if you are post, it should be).
Whatever your husband needs to do to consume enough nutrition and stay hydrated “do it”. You cannot apply normal me standards to his post treatment condition. Your old way of eating and drinking (as you know) are hopefully, temporarily, suspended. For me the awful texture and taste no taste kept me drinking many smoothies for 7 months (happily). BUT it got better, things went the way of a good new normal and I can eat and drink most anything now (carefully, small bites, drink, drink, drink).
He may be moving slow on recovery lane, which is the same speed most of us used. Enjoy the small improvements and both of you will be ok in the long run.
Good luck,
Matt
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His age, and time are on your
His age, and time are on your side. Recovery is painstakingly slow for all of us, even when we are having a "good" recovery. At six months I am finally where I originally thought I'd be... four months ago. The food thing is hard, when the mucosites is done I found it to be the hardest thing. It's mostly mental at this point, but you find that food is just hard to look at let alone eat. I simply sat down with a glass of nutrition shake in front of me and stared at it until I forced myself to drink it, pretty much a sip at a time. I lived on augmented chicken soup broth for probably 3 months. Downing a bowl of soup took hours. When the nutrition increase begins to kick in the trip up is reasonably quick. It just takes a long time before things happen quickly. My oncols are amazing and wonderful, and have told me I will take about a year. So far they've been right on everything.
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Thank youSuzJ said:same timeline
almost same timeline to the day as me.
Watching the boys play, is a good thing, at least he's still there for them, but if he needs to rest, thats what he has to do. But, we are STILL HERE, and he sounds a lot like me, he's still fighting, he's still working.
This isn't a sprint to the finish line, its a marathon, you have to stay the course.
If you need to cry, wait till he's at work, and go bury your head in a pillow and bawl. I did. Because telling my 25 y/o son was the worst thing ever.
My nutrition is hit or miss also, Boost is the only thing I can deal with consistently.. strawberry, all others make me gag. So yes, I'm running on a deficit.
Enough of all the sad stuff - WE MADE IT, we got thru treatment and the hellish 3 weeks after! Everything else will come, give it time
for sharing! I appreciate it. Best of luck on your recovery, too! Keep me posted if you find a miracle food:)
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Oh, thank you!johnsonbl said:Everyone is different
I followed a similar track to your husband (41 yrs, hpv+ base of tongue, neck disection, TORS surgery, radiation). I'm 2.5 months out and feeling very good. I lost about 20lbs and never really had troubles eating. Everyone is just different in how they respond...it sounds like your husband didn't fair quite as well and has struggled with intake. Food is critically important...The most frustrating thing for me was toward the end of treatments...so hungry yet nothing tasted like anything at all. Food is an extremely emotional thing for most people...when you can't taste or can't eat it can seriously get you down in the dumps.
Fatigue is real...I have pretty much returned to a fully normal existence...busy coaching baseball and never stopped working through treatments and such...but every once in a while I literally will go to bed at 9pm and will be unconcious until morning...I've never needed much sleep and tend to be a night owl. But it catches up with you...we've been through a lot.
I would have a discussion with your nurse coordinator or oncologist about a psychologist/psychiatrist at your cancer center, they will have folks who have experience with this. Not only for your husband, but for yourself. You've shouldered a tremendous amount of weight through this as well.
It will get better!
thank you for sharing! It truly helps me to read these real- life experiences and to know we are on the right road to recovery. Take care and thanks again for your words!
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Thank you,CivilMatt said:Welcome
Tilly26,
Welcome to the H&N forum, sorry that you are here, but it sounds like the worst is over (and if you are post, it should be).
Whatever your husband needs to do to consume enough nutrition and stay hydrated “do it”. You cannot apply normal me standards to his post treatment condition. Your old way of eating and drinking (as you know) are hopefully, temporarily, suspended. For me the awful texture and taste no taste kept me drinking many smoothies for 7 months (happily). BUT it got better, things went the way of a good new normal and I can eat and drink most anything now (carefully, small bites, drink, drink, drink).
He may be moving slow on recovery lane, which is the same speed most of us used. Enjoy the small improvements and both of you will be ok in the long run.
Good luck,
Matt
Matt! Yes, he always has to take those sips after most bites. I still feel in a haze that this is really happening. But reading here that what we are going through is so similar to many, well, it just makes it less scary. Thank you again for sharing your experience! Take care!
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Thank you,caregiver wife said:Welcome, Tilly
I agree with all the other responses. Your husband has been through a LOT. Recovery does come with time. What you said about taste and ability to swallow is SO TRUE. Try, try, and try again. My husband enjoys tasting foods even if he can't swallow them. With a good blender, milk or broth can make anything into a "smoothie". Hamburgers seem to be popular...
This group is GREAT for support and advice. You may be able to find local cancer support groups. I attended one for a while and it was helpful. They have since opened a hospitality room down the hall from the oncolgists office and it is staffed by cancer survivor volunteers.
Warm hugs for your family,
Crystal
Crystal, for sharing this. I will pass along the blended options! It seems so surreal still that I'm even on here, but I am, and y'all make it easier to understand. Many thanks for sharing your experience. Take care!!
chantel
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So true!AnotherSurvivor said:His age, and time are on your
His age, and time are on your side. Recovery is painstakingly slow for all of us, even when we are having a "good" recovery. At six months I am finally where I originally thought I'd be... four months ago. The food thing is hard, when the mucosites is done I found it to be the hardest thing. It's mostly mental at this point, but you find that food is just hard to look at let alone eat. I simply sat down with a glass of nutrition shake in front of me and stared at it until I forced myself to drink it, pretty much a sip at a time. I lived on augmented chicken soup broth for probably 3 months. Downing a bowl of soup took hours. When the nutrition increase begins to kick in the trip up is reasonably quick. It just takes a long time before things happen quickly. My oncols are amazing and wonderful, and have told me I will take about a year. So far they've been right on everything.
Thank you for sharing this! That is exactly how he feels! He thinks he should be back to normal and can't understand why he still isn't, even though, like you, he has no interest in food. He pretty much forces himself to bc he knows he has to. And then he quits after a few bites.
I also may not have understood the severity of all he's gone through until reading all these posts. An above comment somewhere mentioned you all being heros and I can see that. I know as the caregiver I often felt like some feelings were... overplayed or just in my mind thinking "toughen up" and I can see now he wasn't exaggerating that every swallow was so painful. I can see now why his face was buried in pain.
thanks again for sharing and giving me a silver lining. Take care
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Thank you!Bobby_Lee said:I am praying for you and
I am praying for you and family. I have had similar surgery. If you have any questions or want any tips on how to get through this please PM me..
I've read a few of your posts I've come across and I'm thankful you share so much! We appreciate the prayers! Take care and thank you for the invite of asking more! Certainly may do that!
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He needs to understand he did
He needs to understand he did not fail his family by getting this disease. Odd as that may sound, he very much sees himself in a protector/provider role, and this is a hard hit on that. I went thru a major trauma in my early 40s, managed to talk myself into clinical depression, and none of it was related to things I actually had any control over. And it wasn't about me, it was about providing for my family. I now have the perspective of 25 years later, and think I finally understand. What I saw at the time was real, and stunningly accurate, but what I saw was also spectacularly incomplete. I strongly recommend a book by Martin Seligman - Learned Optimism. It is very easy to see the bad, and create in your mind threats, risks, failures. It can be much harder to see the good, and to recognize that new opportunities ALWAYS come. Have faith in the possibilities.
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Love thisAnotherSurvivor said:He needs to understand he did
He needs to understand he did not fail his family by getting this disease. Odd as that may sound, he very much sees himself in a protector/provider role, and this is a hard hit on that. I went thru a major trauma in my early 40s, managed to talk myself into clinical depression, and none of it was related to things I actually had any control over. And it wasn't about me, it was about providing for my family. I now have the perspective of 25 years later, and think I finally understand. What I saw at the time was real, and stunningly accurate, but what I saw was also spectacularly incomplete. I strongly recommend a book by Martin Seligman - Learned Optimism. It is very easy to see the bad, and create in your mind threats, risks, failures. It can be much harder to see the good, and to recognize that new opportunities ALWAYS come. Have faith in the possibilities.
Thank you for a helpful perspective.
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Thank youAnotherSurvivor said:He needs to understand he did
He needs to understand he did not fail his family by getting this disease. Odd as that may sound, he very much sees himself in a protector/provider role, and this is a hard hit on that. I went thru a major trauma in my early 40s, managed to talk myself into clinical depression, and none of it was related to things I actually had any control over. And it wasn't about me, it was about providing for my family. I now have the perspective of 25 years later, and think I finally understand. What I saw at the time was real, and stunningly accurate, but what I saw was also spectacularly incomplete. I strongly recommend a book by Martin Seligman - Learned Optimism. It is very easy to see the bad, and create in your mind threats, risks, failures. It can be much harder to see the good, and to recognize that new opportunities ALWAYS come. Have faith in the possibilities.
For the book recommondation! I think that is so accurate- he has the stress of being the provider and as a self-employed entrepreneur, the stress is even greater. If he doesn't work, no money comes in (On his end, I am a teacher). Thanks again for reaching out!
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