Wife trying to understand husband on Cisplatin and Rad

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

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.  

Peneloppe said:

Have to say it

I love reading your posts you make me smile

Yes, Matt has a unique way of explaning things, sometimes I.... LOL!

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!

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.  

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.

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

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