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teatment of family by cancer centers

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

As a wife with a husband that has head and neck cancer I found in the treatment center that I was treated like a stranger that had just walked in off the street. Ive been dismissed more times than I can count. Has anyone else been treated like this? HOW LONG DO CRY AND CRY? HE WAS DIAGNOISED 2 MONTHS AGO

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

Sorry you are experiencing this as this isn't always the norm. I guess it is all depends on the center and the staff. I have only found great people at the cancer center but people are people and not all are warm and fuzzy.

pennynl4
Posts: 49
Joined: Jun 2009

My husband was diagnosed with head and neck cancer May 11 ( a month ago today) and had radical neck dissection on May 20th. He hasn't started chemo yet, but of all the doctor's appoitments that he has had so far, we have been treated pretty wel.....with compassion and understanding. He had his port put in today, and the nursing staff and doctors were very friendly and warm. Even the receptionists and schedulers who called to make appointments went out of their way. Even a nurse called me back after hours in the evening to answer some questions about radiation.

When my husband starts chemo on the 24th of June, I hope the staff are just as understanding.

We both have our moments and try to stay strong. But I know what you mean about crying. Sometimes it just hits me and I can't help myself. I try not do cry in front of my husband or the kids.

How many treatments has he had and how many does he have to have?

Good luck to you and your husband and God Bless.

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

he has had 13 and has 17 to go plus 3 boosts which scares me because of the damage it can cause to his nerve in his shoulder. Today is a bad day for me I just seem to cry more and more. Im so worried about this stupid feeding tube and every time I think about it I just cry
Thank you good luck to you also

pennynl4
Posts: 49
Joined: Jun 2009

I am not sure what boosts are? Can you explain it to me? Also, has he had the feeding tube put in? I am wondering if a nurse comes in to help with the tube at first. I am concerned about that too.

How has his eating been? Does he swallow now and how is the pain?

My husband goes in for the mask on June 19 and starts chemo on the 24th of June.

I just wish this was all behind us. This must be one of the hardest things we will go through in our lifetime.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Penny, I have had a feeding tube since October of 2005. A nurse visit should not be required for its maintenance (and hopefully your hub will not have it for as long). Please read my response to heschie in another post.

It is really not that bad, trust me.

Take care,

Joe

pennynl4
Posts: 49
Joined: Jun 2009

Joe,

Thank you for your encouraging words. Now I just have to convince the doctors it will be needed. One doc told my husband he would need it and the radiation doc said he probably wouldn't need it.

Your words of wisdom and encouragement are certainly helping me. I just wish my husband would get on here and talk to you guys.

Thanks so much.
Penny

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hi Penny

The feeding tube came as a surprise to my wife and myself as well. It was the only time I remember crying through out my entire treatment (tx) when the nurse told me about it and the procedure. Since I had a base of tongue cancer and would receive radiation to both sides of my neck (i was diagnosed stage IV A) because the cancer moved to my lymphonodes in the right side of my neck the feeding tube was installed. I was so glad to have it. By week 4 I could barely eat small amounts of food and drink fluids. The feeding tube allowed me to take in the calories I needed to maintain weight and have the energy to fight the cancer. It should also be put in before or early in tx as you want to be physically and psychologically strong when it is done. I was able to maintain most of my weight through tx, but once tx ended I really started to burn calories as my body fought to heal itself form the cancer tx. Your body really does take a beating from all of the chemo and radiation the body goes through. I was taking in 4000 calories a day and still losing weight. It took about 4 to 6 weeks for me to stop burning so many calories and have my weight level off. I was glad the tube was in early and ready to use. It is no big deal to use or maintain. I had the nurse in my radiation docs. office show my wife and I how to use it. Also, I needed medication that I could not swallow during tx and could use my feeding tube to put the med in my body. All of this can sound unselltling, but once you are in the routine of tx and using the tube, things do get easier. I know I have given you a lot to think about so I will stop. Please ask me any questions you want to know and I will try to answer them.
Pete

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

boosts are done at the end of treatment Not sure how they figure this but he is now getting a 6 of radiation at the end he will get up to a 7 which the doctor said could do permanent damage to his nerve in his shoulder My husband is only 51 No feeding tube until Thursday I am just very worried if he gets this he will rely on it instead of swallowing he says he wont but you hear of so many that have had it for quit some time
Good luck to the both of you

pennynl4
Posts: 49
Joined: Jun 2009

There are so many on here who have had a feeding tube and it doesn't sound like there will be a dependency problem on the tube. It was what got them through all this. Not being able to eat and keep up strength could be a real problem for recovering.

Good luck and let us know how it is all going.
Penny

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

thanks
I think I just need to get beyond this but it seems forever long..13 treatments behind us and 17 to go but it seems like we have been doings this for many months

sunflower5468
Posts: 10
Joined: Jun 2009

I had a feeding tube put in February 20, 09 and I am still using it. It really bothered me at first but it has been a blessing. I still can not swallow well. My doctor said that it is normal and it will take time. I had 33 radiation treatments (head and neck)along with chemo once a week. Now, I am taking another 12 weeks of chemo. I am hopeful that in the next month I will be able to eat again. As far as crying is concerned, go ahead and cry all you want. You're in pain and crying, getting mad and everything else is perfectly normal. I stll cry sometimes but I am thankful for each and every day I have with my wonderful family and friends.

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

well he got the satupid tube today and he is in alot of pain how normal is that doc said it would be tender unless his idea of tender and mine are 2 different things

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hi heschie

It can be painful for a little while. I had the docs. give me pain meds and did not take no for an answer. Mine was mostly discomfort for 2 or 3 days, but I used the pain meds and really did not feel much. just took a while to get use to. AS you move through this process, don't be afraid to ask for pain meds. I took 200 mg of Oxycontin a day and 20 to 30mg of liquid Oxycodone at night. I am 6 years out and doing well. Good luck and stay strong and positive.

Pete

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