Wife trying to understand husband on Cisplatin and Rad
Hello. My husband started his treatment of Cisplatin and Radiation about a week ago. His chemo is a 4 hour long infusion, every 3 weeks. He had his first round of chemo on the 5th. They told us about the nausea but they didn't really emphasize on the importance of taking them around the clock. He couldn't get a hold of the nausea until the 3rd day. We spoke to the Radiation Oncologist who told us we needed to get ahead of the nausea. My question is, how long should nausea last after each treatment? He is still feeling nauseous, and is getting really picky on certain foods. He says smells affect him and he doesn't even let me talk about food! Is he supposed to be feeling tired? All he wants to do is watch TV. He secludes himself in the room because he says he doesn't want to get sick (a cold or flu) and also blames the scents of my cooking. I'm beginning to think he is depressed. So I'm just trying to understand him. He doesn't want to talk to anyone about this. Thanks everyone.
Comments
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Hi, it is a difficult
Hi, it is a difficult treatment physically and emotionally. No one can tell what exactly your partner feels. Denial, refusal to talk about it, isolation, etc are coping mechanism. During my husband treatment I felt I was living with a stranger, fortunatly gradually as he was getting better he emerged :0).
be patient, get support, breath in, breath out and best of luck
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wake up and ....do something to get through
E_s,
Just reading about this is depressing, but fear not, if he is determined to rid his body of the cancer and return to the land of tastes and smells, he will need to become an active participant.
Yes, nausea can be terrible. Take the meds BEFORE you get sick, seek out alternate meds if the present ones are mediocre (they make many, many kinds).
I don’t care how he manages to get his calories in him, he just needs to DO IT. He needs 2K to 3K calories a day (more or less) and he needs to drink lots of water, both for hydration and swallowing.
Even with him doing everything correctly, he may get tired. With just hoping it gets better, I will just about guarantee he will be tired.
Don’t feel bad, many of the H&N members would not be able to tolerate your cooking (tastes or smells). It is one of the less talked about side effects. Today I love to eat and enjoy many food smells. I think I smell one now. BYE.
Matt
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Have to say itCivilMatt said:wake up and ....do something to get through
E_s,
Just reading about this is depressing, but fear not, if he is determined to rid his body of the cancer and return to the land of tastes and smells, he will need to become an active participant.
Yes, nausea can be terrible. Take the meds BEFORE you get sick, seek out alternate meds if the present ones are mediocre (they make many, many kinds).
I don’t care how he manages to get his calories in him, he just needs to DO IT. He needs 2K to 3K calories a day (more or less) and he needs to drink lots of water, both for hydration and swallowing.
Even with him doing everything correctly, he may get tired. With just hoping it gets better, I will just about guarantee he will be tired.
Don’t feel bad, many of the H&N members would not be able to tolerate your cooking (tastes or smells). It is one of the less talked about side effects. Today I love to eat and enjoy many food smells. I think I smell one now. BYE.
Matt
I love reading your posts you make me smile
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Sounds typical, sadly
You will learn in time what works best for the nausea. The trick is that everything you do to deal with the nausea can cause other side effects which can become difficult to manage on their own, constipation being one of them. Another side effect that one of the nausea meds had for my husband was extreme fatigue, a very flat affect and inability to concentrate. My extremely intelligent, communicative and personable husband had to leave his job and spent weeks on end mostly sleeping, sitting silently and staring into space unable to complete many simple tasks. I will tell you that for HNC patients as treatment progresses, the motivation to avoid vomiting is very high for lots of reasons. Our mantra was to do whatever, and I mean whatever, we had to do to get him through treatment and recovery. The thing I want to share with you is that this is all temporary and in time it will get better. My husband is back to work fulltime and is as funny and smart as ever. So, you will have a very bumpy ride getting there but you will both get through. We had many conversations with the treatment center staff about the possibility of depression but decided to ride it out. I will tell you he is decidely not depressed now! He says he has never been happier in fact. So, hang in there and hold on to those who have gone down the path before you. The other thing I would say is to be brutally honest with your treatment team and speak up for your husband if you feel he is not reporting everything they need to know to help him. I kept meticulous records because the data made it about that instead of our different perspectives. I took everything to every visit in case I needed to refer to them. They can adjust meds a lot if you let them know how he is responding. There were weeks when my husband could not barely even physically speak nor did he have the energy. As the caregiver you have to report your concerns when you go in to the treatment center. The thing is they tell you what to do based on what works for most patients but the reality is that no one can predict exactly how any one patient will respond so it is not at all unusual to need to modify lots of things as the weeks go on and the treatments progress. Our hardest weeks were the two weeks after treatment ended and he was emotionally unprepared for that turn of events. Again, it is hard to look back and realize how different life is with what you are dealing with in our rear view mirror. It won't be long until you are looking forward and this is behind you, too. Kick the beast in the teeth and move on to enjoy lots of happy days together. My husband experienced some level of nausea during most of treatment especially after the drugs from the infusion center wore off. That is not true for all patients. He also developed extreme and I mean extreme negative responses to the smells of food. For months he could not enter a grocery store due to issues with smell of food in stores. It brought on violent wretching. The dietician highly recommended eating meals in outdoor settings or other highly ventilated areas to reduce the chances of triggering such reactions. Again, this does not happen to all patients. My husband used a PEG tube for much of treatment. It took about 3 months after treatment ended until this food and smell aversions started to abate. His PEG tube is out and we enjoy meals together again. Just get through it and know better days are on the other side.
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Hang In There
All of us are different, but you've gotten great advice. Get ahead of the nausea and **** until they find a med to control it. I was slightly nausous most of the time and resulted in 2 ensure plus a day, cheese grits for breakfast, peanut butter sandwich soaked in my bowl of chicken with rice soup for lunch and peanut butter soaked in chicken noodle soup for dinner and I fixed it myself. When his thraot gets sore try Throat Coat Tea wit honey. (You can fet it at any grovery store in the tea and coffee aisle) I ate that for 4 weeks. You can also get Drip Drop electrolyte mis at Walgreens and other places. I had one a day and 2 liters of water. 35 rad and 6 chemos in 6 weeks. Yes he will be tired and depression is a possibility. I am 10 weeks post I saw a therapist last week. The real kicker for me was the 2 weeks after treatment ended. I went on IV hydration every other day to get through. Good news it's over and I'm alive. I will am walking 20 minutes a day, going to yoga twice a week and starting back to work next week. If you would like to read my blog www.cancerguy.blog it will give you some insight of my daily journey through this.
Don
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Treatment is a huge mountain
Treatment is a huge mountain that must be overcome. What many people overlook is the toll it also takes on the caregiver. I'm 4.5 months post treatment and I'm very thankful that my wife was my biggest cheerleader. Days I didn't want to even think about taking in calories she stood over me and told me she'd hold me down and force the calories in if she needed to (I elected not to have a PEG tube).
The side effects of treatment hit everyone differently.
Some people here may not like the idea, but I'm a big proponent of THC (marijuana). I did not want to take pain meds/opioids so I instead used THC edibles, cream and patches. I credit them for restoring my appetite, eliminating my nausea and for the fact I did not once throw-up. The THC also allowed me to relax so I didn't have anxiety over the thought of swallowing my calories and they also allowed me to sleep. All without the risk posed by traditional pain pills.
Another thing that helped was meditation breathing techniques. I found several great videos on YouTube.
Calories and hydration also play a huge role in keeping all your symptoms at bay. I'd drink lots of water each day, but I still went in for IV hydration.
Remind your husband that this is all normal and that thousands of people have already successfully traveled this path.
I'm 4.5 months out after 35 3-point radiations and Cisplatin and I'm pretty much 100% back to normal. It's doable, but you've got to put on your game face!0 -
Hang in there...
E, i was nauseated through most of my treatment to some degree. Like everyone is saying here you have to help him stay ahead of it. For some of us in order to do that you literally never stop taking your anti-nausea meds throughout the entire treatment. I took compazine throughout the day as prescribed and then phenergan at night. If your husband is behind the eight ball on nausea right now get him the phenergan if you haven't already tried it. It will make him sleep but when he wakes up the nausea should be gone. At least thats what helped me get out in front of the nausea. Again even if he wakes up feeling good have him continue to take his next dose of daytime anti-nausea meds right away. Dont skip and dont miss or you can expect more nausea to be right around the corner. I recieved a weekly dose of cisplatin and some docs reccomend the every three week dose so i am sure the every three week regime is much more difficult on the body. He may start to feel much better by the end of the second week and y'all may decide to stop some of the anti-nausea meds but before the next chemo treatment go ahead and get on the pills again. Best of luck to you and to your husband. Do your best to be patient, supportive, and give him as much "space" as you think he needs. Eventually he will come around and you guys will get through all this but it will probably get worse before it gets better.
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Food/Smell Aversions
I want to second what everyone has said about calories but I do want to say that the only person that really gets the patient's perspective is the patient and not all patients have the same response to treatment so even being an HNC patient does not mean someone understands what your husband is experiencing. Honestly, even with a PEG tube my husband had many days he could not meet the intake benchmarks for a variety of reasons. He was not being difficult or stubborn. He was doing the best he could on that day. I grew to understand that food and smell aversions are real, physical repsonses that some patients have during the course of treatment. Just keep trying to be supportive and let the treatment team deliver the hard truths about lack of intake.
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The H&N mindsoonermom said:Food/Smell Aversions
I want to second what everyone has said about calories but I do want to say that the only person that really gets the patient's perspective is the patient and not all patients have the same response to treatment so even being an HNC patient does not mean someone understands what your husband is experiencing. Honestly, even with a PEG tube my husband had many days he could not meet the intake benchmarks for a variety of reasons. He was not being difficult or stubborn. He was doing the best he could on that day. I grew to understand that food and smell aversions are real, physical repsonses that some patients have during the course of treatment. Just keep trying to be supportive and let the treatment team deliver the hard truths about lack of intake.
soonermom,
You are correct, each H&N patient travels a similar route through the treatment morass. It is their stops along the way which adds the spice, pain and punch to their story. While my 7 month taste, no taste, awful taste, good taste, smoothie adventure, try everything and hate all most all, is my own. I think I have a pretty good idea of the H&N member’s anguish.
I always went to Sunday dinners at my Parents home, every Sunday. I would always take and try what they were eating, but the results was normally one bite of chicken, one spoonful of mashed potatoes and one spoonful of peas.
When asked why I did not want to eat I put a can of Crisco on the table and said “this is what eating is like to me”. Not a perfect match, but the idea it conveyed was relevant.
I know (I know) it is hard, difficult and impossible for some of my fellow H&N to get by certain obstacles, I just want them to dig deep inside and try to make it through. A body well hydrated and nourished is much better equipped then on which is not.
Matt
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Grateful for your replies!!!
I can’t thank you enough for chiming in with your advice! I was in tears reading all of this. I feel guilty, I feel overwhelmed, I feel helpless, I feel alone and with 2 kids, I feel I’m now breaking down from everything I’ve been juggling. I’m trying to stay patient b cause I know this is difficult for him but I can’t help to feel so alone during this TimE since I do not have family here. I think I’m going to see a therapist for myself since he now is saying he can’t talk to anyone bc he now Has sores in his mouth. I feel angry that this has completely consumed him with no room for anything else, even to hug or hold me or just keep me company. We are newly weds (December 19 2017) and I feel like I don’t even have a friend much less a husband. I’m trying, I’m really trying.
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Bless you
It is awful to be where you are but if you want to get through it you need to take care of yourself. It takes 2 to run a household anymore and if he can't help, you just need to forgive yourself for not being able to do it all. See your therapist! Ask for help. All those people that ask what can I do? Tell them! We asked for grocery store gift cards, help with transpotation, fix a dinner for the "eating" family, clean my house - They really want to help. I did not want my wife cooking for me because I ate at weird times, ate weird things prepared particular ways. (See previous post...LOL) Our house is a disaster but people expect it and we get to whatever we can that is all we can do. If all else fails, Pray it works! It will get better if you take some action and it sounds like you have started - good luck and I will pray for you.
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Nausea is different for
Nausea is different for everyone, I was on cisplatin too and only got nauseous a day or 2 after. I didn't have that big of an issue with it, although my docs and nurses recommended switched between nausea meds every 4 hours. Tiredness is I would say the number one side effect all people have with any chemo. I was so fatigued and drained feeling all I would do is stay in bed all day except when going to treatments. And for future note, fatigue can last a while after treatment is finished. I didn't get my normal energy back for a good 5 months.
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You are doing great...E_schwarz said:Grateful for your replies!!!
I can’t thank you enough for chiming in with your advice! I was in tears reading all of this. I feel guilty, I feel overwhelmed, I feel helpless, I feel alone and with 2 kids, I feel I’m now breaking down from everything I’ve been juggling. I’m trying to stay patient b cause I know this is difficult for him but I can’t help to feel so alone during this TimE since I do not have family here. I think I’m going to see a therapist for myself since he now is saying he can’t talk to anyone bc he now Has sores in his mouth. I feel angry that this has completely consumed him with no room for anything else, even to hug or hold me or just keep me company. We are newly weds (December 19 2017) and I feel like I don’t even have a friend much less a husband. I’m trying, I’m really trying.
Hang in there, i felt so bad for my wife during my treatment. I was in a lot of physical pain and discomfort but i think the emotional pain and discomfort my wife experienced was more difficult to bear. Don't beat yourself up this whole process is really really hard on everybody. It's ok to feel overwhelmed its better to recognize that now and keep that in front of you so you don't go crazy. There will be lots of bad days but the light is just around the corner. You will all make it through this together just dont give up! Take it one day or better yet one minute at a time if neccessary. One of the biggest lessons i learned through my journey is that I needed to let other people love and serve me. I hated being the sick guy and the center of everyones concern but God showed me that i need to be ok with that and that i needed help alot of help actually to get through all this. My wife was and is awesome but she needed to let others help her with her burdens too.
Stay positive and keep talking its very theraputic to get that stuff out of your head and your system.
Jake...
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Our situations are very similar
Hello
Reading your post our situaitons sound so similar, maybe we can be of support to one another. I just found this board yesterday so have not explored too far but it is a relief to know there is a place to learn from others who have been through the same thing.
My husband was diagnoed mid January ( 2018) and is in week 2 of radiation+immunotherapy , he did not tolerate the cisplatin, it was damaging his hearing, so they have him on immunotherapy.
We have two children as well, I run a business , and am the sole breadwinner in the household. My husband has been staying home with the children and running the house for the last 6 years until he received this diagnosis.
I can totally relate to not knowing how to understand your husband, mine has changed his behaviour so drasticlly already. We can no longer discuss or process anything , which was how we used to communicate .He is very isolated and unpredictable in his mood. He has a very hard time being "looked after" so is rejecting all things I do to try to make things easier or more organized, or more comfortable. He is very irritable and snappy and we all feel like we are walking on eggshells.
I know it is because he is angry about losing control of his life, and he is so uncomfortable with pain in his throat/mouth and nauseus all the time, can't sleep properly, so many things are hell for him right now.I have felt angry at him but never for long because none of this is his fault and I can not begin to imagine what it is like for him.Mostly I feel confused and sad and just not sure how to handle all of these things I need to handle for my family.
I am trying to find the "new normal" for us, and to rearrange the household and the way our family operates to allow for what he needs.
I am sure we will get better at this and I know it is just the beginning.
I totally agree with the person who said accept help when it is offered, I have friends picking up our kids from school so I don't need to leave work early , and another friend makes us a meal every week.
I also hired a cleaning woman even though we really can not afford that right now....but having the house clean and organized makes things feel happier and less chaotic, and I know my husband feels better in a clean house.
I totally recommend seeing a counsellor or therapist, I actually see TWO!! One is more centred around parenting , I want to be sure I can help my children through this in a healthy way ( there is more ot our story- our kids have been through a lot this past year) .The other therapist is at the cancer Agency where my husband is being treated, and she specializes in helping people with issues to do with head and neck cancer. So the struggles I have with adjusting to the medical stuff , including his changes in behaviour etc is what I have talked to her about.
Anyway nice to hear from you and I hope it is of some comfort to know that I understand what you are going through
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To be painfully honest..
I don't understand spouses that are going thru this as most of us have, that change so drastically, that make life hard, like you are "walking on eggshells"
I just don't.
My son, bless his lil cotton socks (he has big feet, thats kinda a joke) was totally my rock.
I never wanted to make it hard for him, he did some of my job as well as his own, so I wouldnt get in trouble, he got meals, he was there, checking on me - yes, hovering at times, BUT never would I have been so grumpy that he was "walking on eggshells" and believe me, I know what you mean (I have an ex husband!)
I'm sorry, but I'd like to take some of these people are shake them, and tell them "you are NOT alone, you have someone that loves and cares for you!" - and - "this is temporary, this too shall pass!"
To the caregivers - listen to those that have tread the path before you, don't lose yourself. Take time, even if all you do is walk your dog 6 times longer than usual! Dogs will listen, talk to them
Go to the mall, the library, anything.. just take time for YOU. Don't stress the calories or the food, if your other half wont eat, tell the Drs, be a snitch (my son did it to me!) I learned something a long time ago, when I worked for NYC*EMS - we were asked "whats number 1?"
We all said Our partner.
Instructor - No, try again
Class - Our ambulance?
No
Equipment?
No
...... baffled silence.
YOU ARE NUMBER ONE. You have to take care of YOu, without YOU, there is no one to drive the ambulance, or use the equipment, or to save the lives. You are number one. Take care of YOU.
While I was activly "sick" I worried more about my son's well being than my own, but he was my rock, my caregiver, chauffer, cheerleader - he was my world. I was still number one tho, I had to take care of me. This is how your other halves should be thinking. They need to get out of the "woe is me" and into the "what can I do to help myself" mindset.
I went into this thinking I was superwoman, and I am sure there are people that remember my pitiful posts when I realized I wasn't and that my armor got a bit dented. But I'm here, I have battle scars, but I won.
I want to say, kick a little a.. ... make them understand, tell them to grow a.. but I know it doesn't work. They have to get to that place on their own, they have to sit up and say, I am going to beat this, and I will smile all the way through!
That was one thing my nurses did say, that I was always smiling, and that the only way they could tell how I really felt, was my color, and my vital signs/lab work. Keep smiling, it makes people wonder what your up to.
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Was in your shoes
Hi! My husband was diagnoised in September last year. He finished treatment 4 December 2017. He had a golf ball sized tumor at his base of tongue. His treatment was 35 radiations and 7 (he actually did 6) chemotherapy (cisplatin) treatments. He had a feeding tube the whole time - really a life saver. He was put in the hospital 4 times for different complications. We have 2 children (18 and 16) at home.
As the caregiver, it was so overwhelming. Honestly though, I have no idea how anyone could make it through this alone or with minimal support.
My husband was nauseous most of the time during treatment and for at least 6 weeks after treatment. It took a trip to the hospital, sometime around week 3, before they finally found a medicine to help him (Zofron that disolves in the mouth). Without the Zofron, he was getting sick all day, everyday. With the Zofron he was usually just tired and in pain and miserable. He was still sick with the Zofron - especially post treatment - but it was better than without. He also spent most of the time in bed. He wasn't even able to come down for Christmas morning.
I'm writing all of this to say that what you've described is expected and will likely get worse. The best thing for you is to find some support for you. Someone to run the kids to their activities, cook a meal, clean bathrooms, give you a couple of hours to decompress at a library, coffee shop, beauty shop. Also, assuming no family history of addiction, tell him not to be afraid of taking the pain medicine. He will be miserable enough, take the medicine. Studies show that taking pain medicine for pain do not lead to addiction.
These boards are an incredible resource. I barely ever post but I was on here reading almost every day. There is so much information here.
Best of luck.
Melissa
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