First post here - hubby is 7 weeks out
Hi all,
I'm new here, but have been reading your posts since last summer when my hubby was dx with tonsillar squamous cell carcinoma. He had 35 doses of radiation and 7 weekly doses of Cisplatin. From what I can tell by reading here, he had a pretty severe reaction to the chemo. He was dehydrated, fell down, had hallucinations, and weird behavior right from the start. I soon realized that it was the steroids that were making him paranoid and manic. It was pretty extreme as far as his behaviors - talking up a streak, very emotional, distracted, not listening to his docs, accusing me of wanting to leave him, just to name a few. It was scary, but I didn't tell the docs because I thought, well, he needs these drugs.... So, I just hung on through the ups and downs each week, riding it out like a horrific roller coaster ride. Long story short, he was hospitalized twice, got thrush, neutropenia.....Got the PEG tube at his 5th week, lost about 20 pounds. As far as side effects - he had them all. Name one, he's had it and had it bad.
Now that we're past the 7 week mark from post treatment, I can finally say that things are getting better. At one point we were up to 9 medications for all the different side effects and I had to log it all in a journal and a spreadsheet and use timers to keep track of it all. It was very challenging to say the least. You all know how slow the recovery goes, so I won't repeat myself. He's beginning to get over the nausea and gagging reflex, the sores on his tongue are finally going away, and the awful mucositis is releasing its grip, although it still chokes him at night sometimes. We're still doing the tube which is getting to be a real drag - for both of us. He has trouble eating due to pain and that seems like it's going to be a slow climb, too. But we are working soft foods in gradually and he is able to do more each week. I'm weaning him off the pain meds.
I should have posted before, but I just didn't have time. It was your posts here that kept me going. You guys kept saying, hang in there, you'll make it, etc. and that was always so reassuring to me, even though sometimes it scared the heck out of me to see how long some of you are still having issues. The docs didn't sugar coat things for us, but you never know how it'll actually be during your own treatments since everyone is different.
So now...I'm trying to encourage him to be more active. The main things I'm worried about now is that he's very weak from basically just sitting or sleeping ever since his dx last summer. He hasn't been active at all. I'm afraid that maybe I've been too easy on him. I've been by his side day and night since the beginning doing whatever needs doing. I'm not complaining - I'm happy to be able to do it and honored to be able to take care of him in his time of need. I know he'll come around eventually and this will be far behind us one day. But in the meantime, we're both hoping he can get back to work soon so we don't lose our health insurance - or our income since I'm not working right now. His employer has been great through all this, so that is a blessing.
Anyways, thanks for reading my long post! I appreciate any feedback you might have.
~The Wife
Comments
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Welcome
We're glad to be of help. At seven weeks, you have been through the worst of it and I'm glad you've noticed the small improvements. As you pointed out, exercise and good nutrition are really important during the healing process. Shortly after finishing treatment, I was shocked to need help getting out of a car. It was a low, little sports car, but still!
It sounds like you've really been on top of everything. Many people do just fine after going back to work. In preparation, your husband can build up his stamina with walks, light house and yard work, and other exercise. The thyroid is often affected a few months after radiation. If your husband begins to feel worse or have more trouble concentrating, get it checked.
Make sure to take care of yourself because this has been hard on you, too. Soon you will both be able to look back on this experience and forward to a long and happy future!
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Depression
Don't forget to consider depression. It is common with cancer diagnosis and treatment. I would ask your primary care physician for a blood panel to rule out anemia and or vitamin deficiency. Have seen all these things post-treatment with Cisplatin with my husband.
I know y'all are both tired. Hang in there!
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WifeNoellesmom said:Depression
Don't forget to consider depression. It is common with cancer diagnosis and treatment. I would ask your primary care physician for a blood panel to rule out anemia and or vitamin deficiency. Have seen all these things post-treatment with Cisplatin with my husband.
I know y'all are both tired. Hang in there!
I recall turning a corner 5 weeks post tx and really gaining back a lot of energy week 6 post tx with Cisplatin, so hopefully, your husband won't be too far behind that. It sounds like he has needed so many drugs that I imagine those have an impact. Wonder if he had the patch for pain, I know that threw me for a loop and once I decreased and got off it, things improved. It really does get better!
God Bless
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Welcome to the H&N Group
Welcome to the group, but I'm sorry you need to be here. He has ben through a lot. Recovery is slow and on it's own time frame and every one is a little different. Now the doctors have done there job, now it is his turn to do his part. I was told to walk in the hospital to the end of the hallway and back three times. I did it five laps. Yes he is still very tired, but needs to get up and do some walking. Yes he will need to set down and rest, but needs to give it his all.
Bill
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Welcome
The_wife,
Welcome to the H&N forum, sorry you are here, but at least you are into the recovery phase.
All the advice given is good and should be followed, with plenty of nutrition and exercise to pay huge dividends.
“Name one” did he have severe neck burn? Just asking.
Heal on,
Matt
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Thanks for the suggestionsCivilMatt said:Welcome
The_wife,
Welcome to the H&N forum, sorry you are here, but at least you are into the recovery phase.
All the advice given is good and should be followed, with plenty of nutrition and exercise to pay huge dividends.
“Name one” did he have severe neck burn? Just asking.
Heal on,
Matt
To answer your question CivilMatt, actually no - you got me on that one, lol!
He has really thick skin or something because he didn't get a bad burn. His docs were really amazed at that. Towards the end when it was looking red and starting to blister and peel a little bit, we just kept using the Vanicream. But then we were told to use Silvadene and to do wet soaks, but for some reason that only made it worse, so we quit and it healed up nicely on its own. I wish the inside would heal as nicely as his skin! Yes, he's been on the Fentanyl patch and we're weaning off that and oxycodone. At his first follow up this week they are doing bloodwork and swallowing studies, plus we are meeting with his MO. I'll ask about the thyroid. And depression....yes, I've approached that subject already with him and I think it would be good to try a med for that. I always get SAD this time of year and will probably need a little something myself!
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Walkingthe_wife said:Thanks for the suggestions
To answer your question CivilMatt, actually no - you got me on that one, lol!
He has really thick skin or something because he didn't get a bad burn. His docs were really amazed at that. Towards the end when it was looking red and starting to blister and peel a little bit, we just kept using the Vanicream. But then we were told to use Silvadene and to do wet soaks, but for some reason that only made it worse, so we quit and it healed up nicely on its own. I wish the inside would heal as nicely as his skin! Yes, he's been on the Fentanyl patch and we're weaning off that and oxycodone. At his first follow up this week they are doing bloodwork and swallowing studies, plus we are meeting with his MO. I'll ask about the thyroid. And depression....yes, I've approached that subject already with him and I think it would be good to try a med for that. I always get SAD this time of year and will probably need a little something myself!
I agree with Bill. Walking was the best thing that worked for me as well. I don't know where you live but if it's too cold take him to a mall and walk with him there. I felt better each time I got out and walked. He'll get better. Some anti deprssants might help as well. Talk to the doctor about it.
Good luck and God bless,
Gary
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my boyfriend went back to work
at 10 weeks. Basically around noon time he was exhausted. He has desk job but still he had to go to his car to lay down for 30 mins. it improves slowly, even now at 10 months, he is exhausted after work. One thing that he tought that made a big difference was to cut off pain med.
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We have similar stories...
and i am a wife as well. We had a multitude of side effects also, including hallucinations from the steroids. The best news is that you've climbed Mt. Cancer and the hardest part is behind you. I could not have made it without the information and support from this group...it is a treasure and I'm glad you have found it also.
With regard to the nausea and gagging - my husband had it badly for several weeks - sleeping in a recliner helped with draining and a humidifier was also beneficial. Time eventually saw a decrease in the gagging and retching.
Give yourselves big pats on the back for making it through the tough part and be kind to yourselves during the post treatment phase by not being too demanding of your body. Find that balance between woring on getting back your weight and swallowing and not overdoing it.
Barbara
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Everyone is differentlifeisDHA said:my boyfriend went back to work
at 10 weeks. Basically around noon time he was exhausted. He has desk job but still he had to go to his car to lay down for 30 mins. it improves slowly, even now at 10 months, he is exhausted after work. One thing that he tought that made a big difference was to cut off pain med.
We had to balance trying to swallow and being able to work with weaning off pain meds - for now the pain meds are enabling him to progress in both areas - so our titration off them is a slow (but steady) process. I am not is a hurry to ditch the pain meds as long as I know they will eventually go. If he needs them in order to progress, then so be it.
Barbara
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Mt. CancerBarbaraek said:We have similar stories...
and i am a wife as well. We had a multitude of side effects also, including hallucinations from the steroids. The best news is that you've climbed Mt. Cancer and the hardest part is behind you. I could not have made it without the information and support from this group...it is a treasure and I'm glad you have found it also.
With regard to the nausea and gagging - my husband had it badly for several weeks - sleeping in a recliner helped with draining and a humidifier was also beneficial. Time eventually saw a decrease in the gagging and retching.
Give yourselves big pats on the back for making it through the tough part and be kind to yourselves during the post treatment phase by not being too demanding of your body. Find that balance between woring on getting back your weight and swallowing and not overdoing it.
Barbara
HaHa, I like the Mt. Cancer comment. I'm going to use it! So, someone else besides my hubby had the hallucinations and psychotic reactions, too. Glad to hear I'm not the only one. Those were side effects that the docs didn't mention. One RO only said that you're going to feel like you're going crazy and I was like, so, what else is new? I go crazy a lot, but not THIS kind of crazy. He almost drained our savings and was going to form a partnership with his siblings and buy property, etc. etc. Really had a hard time convincing him to wait on that. Phew!
BUT, yes that's behind us, thank goodness.
So, Barbara (or anyone else who wants to reply), as a wife, how do you balance being a coach vs. a nag??? I feel like I'm turning into a first class nag. Just lately, my caregiving has bottomed out and I'm teetering on the brink of burnout. We're trying to make the transition from tube feedings to real food and it feels like we're going through the same thing we went through at the beginning of treatment. Back then he refused all food and didn't want to drink the shakes or the supplements, so going on the tube back then was a relief. It was nice knowing he'd get the nutrition he needed and all I had to do was A, B, C....
So we've been trying different soft foods for about 3 weeks. We've been through several discussions with the dietician and doctors on what to try and how to mange the lingering SE's and start the transition to regular food. He's still in pain and his MO encouraged him to stay on the pain meds for now since he needs them. I'm just getting soooooo frustrated when I see him sitting down, trying bites and sips and then not finishing anything. This is going to be harder than we thought it would be. I know I need to be patient, but I'm running low on that. My biggest fear is that he'll be in that 10% category of permanent tubers.
Arrgh!
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Gosh, only 7 weeks?
Dear wife;
I didn't have to have chemo or radiation, the surgery, radical dissection, done via the di vinci robot, took care of me..I had a mass of cancer on my epiglottis, very rare and quite scary since that's the flap that opens
& closes when you swallow, keeping food, drink, etc out of your lungs.
I went to speech therpy for 2 months to learn to swallow again, and to learn to speak. I had a feeding tube down my nose for almost 3 months.
The difficulty with swallowing food was a real battle, I didn't want any one around when I was trying to swallow...I found fried (soft) egg yolks went down well and I could taste them. I remember the evening, I took 3 bites..it was a victory.I also would crush ritz crackers in tomato soup ( made with water )..2 crackers was about all I could eat.
I drank scandishakes ( available through Amazon ) they were so good and provide 600 grms of protien.
My level of activity was walking from the recliner to the kitchen, tired me out.
Anyway, I'm thinking that maybe you & he are expecting a little too much, too soon. Sounds like he's doing fabulous , and try not to worry about the amount, just, that he tries. Swallowing and staying hydrated is the most important.
Sorry for rattling on, I'm 4 years out now, and have been declared cancer free..just take each day as it comes and try not to hover
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Hi Wife
I want to thank you for hanging in while your husband was going through all these problems. I was almost the same way, I ran everyone away from me and could not understand why no one would visit. My darling wife was there for me all the time and I know I made life for her hell, but she never left me through it all. You are a wonderful and loving caretaker, may God brings His blessing upon you. I am happy to hear that your husband is finished his treatment but as you know from reading all the post, healing takes time, but everyday things are getting a little better. He does need to start doing something, enything that will take his mind off of all the problems he went through. I was able to keep working through both of my treatments, and that was a wonderful blessing to me.
Welcome to our family here on CSN H&N
Tim
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You're right. It's a longHondo said:Hi Wife
I want to thank you for hanging in while your husband was going through all these problems. I was almost the same way, I ran everyone away from me and could not understand why no one would visit. My darling wife was there for me all the time and I know I made life for her hell, but she never left me through it all. You are a wonderful and loving caretaker, may God brings His blessing upon you. I am happy to hear that your husband is finished his treatment but as you know from reading all the post, healing takes time, but everyday things are getting a little better. He does need to start doing something, enything that will take his mind off of all the problems he went through. I was able to keep working through both of my treatments, and that was a wonderful blessing to me.
Welcome to our family here on CSN H&N
Tim
You're right. It's a long process... I keep hearing that and I keep telling myself that. Yes, it's true - we have high expectations that are not realistic. I think it's just that we're worried about the time he's been away from work and getting back, but it can't be rushed. I keep coming back here to read the threads and try to hold on. This is so tough.
Congrats Grandma on 4 years and thanks for coming back here to dispense your wise words of wisdom! That's impressive - you had robotic surgery and nothing else. We were offered that too, at first, but decided to do the chemoradiation.
Tim, thanks for your compliments and warm welcome. So nice to have a group like this to come to. You guys are awesome.
There will be much to be grateful for this Thanksgiving....I'll try to appreciate our gains more than our losses. We plan to visit my mom who has Alzheimer's and have dinner with her at the memory care facility where has lived for a little over a year. Wow, our lives are so different now, but I try not to focus on the past. Being together is way more important than anything else. It's definetly not about the food, lol!
I wish you all a Happy Thanksgiving!
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