how to help my husband through this ?

Hi Clare,

Hopefully, his nausea will be his worst side effect, but maybe not.  It is disheartening to hear they haven’t controlled the nausea yet, but I am hoping on this next go-a-round he does better.  There are so many choices, they should land on a winner.

I used magic  mouth wash very successfully for throat, tongue and mouth discomfort.  I had a very good mixture and sipped, swished and swallowed (every drop) of 6 bottles.

I am sorry, but he needs to try anything to feel better and to keep a  positive outlook.  I know it is difficult, but it is one day at a time.  Try to stay hydrated and fully nourished, this is very important.  Don’t give up, it does get much better.

Matt

I had the very same diagnosis...squamous cell carcinoma, HPV positive.  The tumor was at the base of my tongue.

I lost a lot of weight early in my treatments, just like your husband.  So much so that they put me in the hospital for 3 days to stabilize me.  My throat was so "burned" that eating real food was out of the question.  If that is the case with your husband, I highly recommend getting a feeding tube. It was the only source of nourishment for me while I completed my treatments.  I lost about 20 pounds in the first 2 weeks, but only 5 more after the feeding tube was installed.

Because your husband's tumor is HPV positive, the likelihood of the treatments being successful is above average.  He has a good chance of surviving. But he will not be the same...I call it my "new normal".  But your husband's "new normal" is likely to be much different than mine. My point is, you learn to deal with it.

My last bit of advice is surround your husband with a great support group, pray for him, and don't look too far ahead.  Win the day as I used to say. As best your husband can, win each day and before you know these brutal treatments will be over.

God Bless you and God bless your husband.

They should have given him an infusion of a drug called mannitol with  chemotherapy. Cisplatin can affect the kidneys, and giving saline and mannitol can help prevent any damage. Mannitol is an osmotic diuretic that increases urine output. It may be used before cisplatin to reduce the nephrotoxic effects of cisplatin.

He will not be the man you married. His world changed the day he was told he had cancer. His world changed again with the start of treatment and will continue to change the farther into treatment he goes. It is still changed for several weeks when treatment stops. 

He will come back a little at a time but never the same. 

We the caregivers do have a hard time but we do not experience their pain and the sickness and the fact that the strenght and stamina they have is just gone.

My husband is 4 years out of treatment and NED. Thank the Lord, but he will never get the muscle and stamina back. You don't recover at the age of 50 like when you were 20. He can no longer be the one who works the hardest or latest in the day. It changed him. 

He has a different outlook in life. He found out his real friends and the people he thought were friends. He no longer looks at things the same. He was a workaholic, now he refuses to be at work late. 

He is much more synical and he no longer volunteers himself to people like before. 

Yet, he is my husband and I love him. He decided life at home is more importnat than the money you make. We have a lot more time together now, but  a lot of it is him relaxing to be ready to tackle the next day and I am okay with that. He listens more to me and he is more loving to me as I with him. 

You will have to get used to his "new normal" because this is the life cancer gave him. You will start to realize what is really important in life. If the grass does not get cut, or he doesn't want to go to the family reunion or doesn't want to eat what you cooked for dinner, so be it. 

In the end of this, you both change into different people, but you are doing it together and with each other

Andy13460 said:

New Normal not me I'm old normal nearly. It's a state of mind

I get a bit sick of this new normal term  Im 57 years of age  40 days post treatment today, running 35 miles a week, back to work, not using pain medication, eating normal food ( taste is about 90% back Saliva 80% back)  I will find out if the 3 Cisplatin & 35 doses of radiation worked some time in September  if it has good if it hasnt nothing I can do to change that. I refuse 100% to let cancer make me a victim or a different person. I was T2:N1:M0 SCC base of tongue HPV16+

Andy, exactly why I follow your posts with the most interest.

I truly believe that how you come out of this is a direct refelction to what you put into it. I've met many people now that are going through exactly what we've all experienced (as either a patient or a caregiver). Some people go through this angry. Others full of pity. Some give up. Some give in. And, some look at it as a speed bump and simply look forward to being exactly the person they were before their diagnosis. I certainly think it can change one's perspective. I already have plans i didn't even consider prior to my diagnosis. My diagnosis has caused me to refocus, not 'change' in any way that is not positive.

We literally celebrated my diagnosis - we had a 'Happy Cancer Cake' and everything. I made a list of all the restaurants I wanted to try before my taste buds checked out. We joked about how my Amazon order history went from cool electronic gadgets to vomit bags and a Squatty Potty. It's all simply part of the journey.

rebelbert said:

Don't Give Up!

I had the very same diagnosis...squamous cell carcinoma, HPV positive.  The tumor was at the base of my tongue.

I lost a lot of weight early in my treatments, just like your husband.  So much so that they put me in the hospital for 3 days to stabilize me.  My throat was so "burned" that eating real food was out of the question.  If that is the case with your husband, I highly recommend getting a feeding tube. It was the only source of nourishment for me while I completed my treatments.  I lost about 20 pounds in the first 2 weeks, but only 5 more after the feeding tube was installed.

Because your husband's tumor is HPV positive, the likelihood of the treatments being successful is above average.  He has a good chance of surviving. But he will not be the same...I call it my "new normal".  But your husband's "new normal" is likely to be much different than mine. My point is, you learn to deal with it.

My last bit of advice is surround your husband with a great support group, pray for him, and don't look too far ahead.  Win the day as I used to say. As best your husband can, win each day and before you know these brutal treatments will be over.

God Bless you and God bless your husband.

 

you have exactly what my husband has....

AnotherSurvivor said:

In my experience, the same

In my experience, the same way that the effects of treatment tend to be cumulative (bad things accumulating), the recovery tends to be cumulative (good things lead to more good things).  It is depressingly slow, for some people literally depressing, but salt and soda rinses eventually heal the throat sores, calories eventually heal the body.  The activity that all generates leads to activity, and increasing activity leads to increasing activity.  

Getting to the end is a painful march in which all you can do is put one foot in front of the other and keep going.  It does end.  The magic bullets are either complete fiction or very, very basic techniques.  Most of us lose the desire to eat, most of us lose a great deal of weight.  At the end I lived on chicken broth/egg drop soup augmented with Benecals for every meal every day for at least two months. Every day from week 3 on was 2L infusion of saline.  700 calories was a very good day for a while.  In that I know I was not alone here.  It's just ugly.  It was only in month 7 post that I finally packed up my mucus suction pump.  But it does end.

My normal is now a blend of old and new, and some of the new will probably drop off in time, but that has always been part of life.  Overall my old diet war is over, I am so far under my old target weight that I now fight a maintenance battle not to avoid obesity, but to stay at [BMI] ideal; AND I'M WINNING and have 40 lbs of  lee-way.  My diet is so healthy it disturbs me, no alcohol at all this year; what's the point of life without ale and a fine Cali Zin?  Next month I start sailing again; for the anniversary of my cancer diagnosis in October: Fencing school (with Sabers!).  If I die at the helm with my sword in one hand and my brandy glass in the other it will be a good death, and certainly more pleasant than death by chemo.

Well said!