done!

susanc1

I had been posting weekly on hubby's journey, which was going well until week 5 when he developed the dreaded fever of more than 100.4. This resulted in a four day stay in the hospital and then a slight nose dive. I am not sure I would recommend being admitted to a teaching hospital again. There was a great deal of confusion and many mistakes along the way. For an unknown reason, he was placed on a cardiac diet...about 600 calories per meal, until I told the doctor that his nutritionist wanted him on 3000 calories daily. This occurred over the Labor day weekend so he had a break from treatment and rebounded well, again eating soft foods. Week six was actually pretty good.

He rang the bell yesterday. WHile he is currently suffering from a nasty sore on his tongue and tires easily, he was a trooper. He did not use a PEG or a feeding tube. He is currently on liquids and his preferred drink is a half glass of whole milk combined with a half glass of Starbucks bottled frappacino every few hours. He never got dehydrated and as of today, he lost only 15 pounds. After the hospital stay, the nutritionist told him that these last few weeks were tough, but willpower would need to be called upon. He needed to hear that. We were told both here and by the docs...hydrate, hydrate, hydrate....

What would we share with others starting this journey?

Get as much education as you can and this site was a blessing. I didn't post nearly as much as I read, but what I learned here prepared us for discussions with the docs. Hubby says that he could not have done this alone. I know that some people work while getting treatment and that many support people must also work to feed the house, but support is probably the most important thing hubby needed. He tried anything that we read about on this site that made sense and almost all of it worked. For those trying to get Nutrasal for dry mouth...still on back order. Hubby's strategy for not losing weight....not doing too much at all except playing Scatter Slots on his phone, winning and losing large amounts of (play) money. I think he has become addicted, but he correctly notes that it is simply mindless and gets his mind off his pain.

Ask, ask, and ask again. We asked questions constantly and honestly, I was surprised that some of them could not be answered. Prepare to be frustrated for the standard response "Everybody is different, so I can't really say." arrrgggghhhhh! There was one chemo nurse who really knew her stuff and was able to answr almost all of our questions, so she was a great resource. Keep all your documentation. Now that the bills are rolling in, we are finding that we were charged for doctors we have never seen, so navigating through these details is frustrating.

The pain is difficult for him and for me to watch. I ask him his pain level but what helped him was comparing it to other pain he has experienced. Was it as bad as the pain from his tonsils being removed? Kidney stones? THis gave him a reference for rating his pain and a sense of control as well. Even the grandkids ask him his pain level! (gotta love em).

From a caregiver standpoint, this is awful to watch and be part of. It is hard to watch someone you love be in pain and being very limited in what I can do. With a nasty mouth sore right now, he is comminicating in sign language and text message, preferring not to talk. THis was harder for me than I thought and it has been hard for him becuase he doesn't want to put this on me. We are both mental health therapists and we relied a great deal on our training which helped (You know....practice what we preach!).

Others on this site have said it, and I will confirm it.....it gets better. There are good days and bad days. We get through the bad days minute by minute sometimes and breathe on the good days, thankful for the reprieve. I  am personally amazed at the strength and courage of people who must submit themselves to treatment. Hubby as been brave,  and I will say that his sense of humor has been his strength. I think he is planning on painting the mask with a glow in the dark paint and wear it for halloween!

s

Angel5

Hey Susan!

Thanks for the update!  I can certainly relate to the comment "everybody is different".  My Husband is in the 5th week of radiation and is still doing fairly well.  Knowing that "everyone is different" I am scared what next week (the last week) will bring.  I also understand the two weeks after his last treatment can be rough.  Any insight?

susanc1

Angel5 said:

Hey Susan!

Thanks for the update!  I can certainly relate to the comment "everybody is different".  My Husband is in the 5th week of radiation and is still doing fairly well.  Knowing that "everyone is different" I am scared what next week (the last week) will bring.  I also understand the two weeks after his last treatment can be rough.  Any insight?

A lot of patience! Hubby naps

A lot of patience! Hubby naps frequently and has all but stopped talking to me...so I feel lonely even though I stay busy. I feel more like a mom than a wife or even a friend becuase I am always asking him to eat and checking on him. Our primary told us there would be and bad days and he was right. Most nights hubby gets up and falls back to sleep in the recliner. He also has a humidifier by his spot on the couch and by his side of the bed to ehlp with dry mouth. My advice would be to make sure you are taking care of yourself, give him choices about eating, remind him to drink, drink, drink. If you have a dog.....let them be friends.....there is just something about pet therapy. On the good days, get out...go to a movie, the symphony, something other than chemo/rads. It really helps. Take a pillow and the obligatory pack of water, rinses, swish and breakfast drinks. Finally....stay in today. Try (hard) not to fret about tomorrow. We started our journey by saying we have to start to finish. We were out today and he said something about pain and this was his first day after radiation. I laughed and told him, "We started by saying one more week for six weeks, and one more day for the last week (by far the l o n g e s t week ever!). Now we are on day one going back up the hill!"

 

I hope that helps!

Angel5

Thank you!

Sooo stressful!

MJG1

Congrats on being DONE

susanc1,

Everything you said was so helpful and uplifting.  We are still in the chemo therapy only stage (9 weeks) then we start with chemo and 7 weeks of daily radiation.  I dread radiation, but know it's where we have to be to get past this!! Good luck with your two weeks past.  I hope it won't be too bad!

Margi Greene

 

susanc1

MJG1 said:

Congrats on being DONE

susanc1,

Everything you said was so helpful and uplifting.  We are still in the chemo therapy only stage (9 weeks) then we start with chemo and 7 weeks of daily radiation.  I dread radiation, but know it's where we have to be to get past this!! Good luck with your two weeks past.  I hope it won't be too bad!

Margi Greene

 

radiation

Radiation wasn't bad. He got a mild rash from the Erbitux but when he went to the hospital it just went crazy. He had been using Aquafuer...but it is really greasy. Thet gave him something in the hospital but what he really liked was Udder cream...(Its has black spots on it like a cow..and you can get it at wally world). So...going on the "everybody is different theme" hubby still can taste most things. He does have the thick ropey saliva and constantly spits. I will say that this has really the worst for me...a lot of gagging and retching...and that is why I am a therapist and not a nurse!. He can eat bacon, but not mashed potatoes. Scrambled eggs with no salt and a good dash of whole milk to make them light and fluffy. Pancakes are out. Egg drop soup is in. Hsi nutritionist suggested Mcgriddles, but that lasted a day. He can drink coffee just fine. His nurtitionist told him that if food tasted metallic try eating with plastic forks and spoons. Whole milk and she sugested fortifying it with powdered milk, but he wouldn't do that. The docs told him that things would get bad by week 3 but he was good until the fever but really it has only been this last week that has been the worst. I suspect the next coupe of weeks will be rough because he has to heal, but what he experienced was not as bad as what some people here have experienced. WHen he has his tonsils taken out, he imagined the worst, but it ended up not as bad as he thought and that is true about this as well. I don't want to take away anything from someone whose experience has been worse. I feel that all in all, he started out with really good health, had a few pounds he could afford to lose, enough time to take off work through this, and a great primary care and ENT.

I will be checking to give whatever support I can

s

CivilMatt

Good job

s,

Congratulations on finishing treatments and now becoming a post treatment caregiver (ouch, just kidding).  Sounds like you ended up with enough knowledge and help to make the trip manageable.

I don’t know if you need glow in the dark paint, my mask glows all by itself.

Stay hydrated, every swallow counts.

Matt

 

susanc1

CivilMatt said:

Good job

s,

Congratulations on finishing treatments and now becoming a post treatment caregiver (ouch, just kidding).  Sounds like you ended up with enough knowledge and help to make the trip manageable.

I don’t know if you need glow in the dark paint, my mask glows all by itself.

Stay hydrated, every swallow counts.

Matt

 

post tx caregiver

Funny! I kinda like the term Keep your fingers crossed...there is a part time postion at the cancer clinic (Patient navigator) that I am hoping to get. It involved going around and chatting with patients and family members and helping them navigate through the process. I would imagine that there are folks like that at many treatment programs.

You have been exceptionally supportive , so again...I thank you !

s

mrspaul

thank you for such a great

thank you for such a great post!  we are just beginning the chemo stage -- starting thursday...I will be also keeping your tip about plastic spoons in mind.