Hello all this is my first post but I have been reading like crazy since I found this site. My husband was diagnosed Augusts 1st, had surgery 2 weeks ago and is doing amazingly well. He has been off narcotic pain meds since 5 days after surgery. He has a PEG in and is getting food mostly through that but is now eating mushy foods as well. So, we are getting ready to start radiation TX and Chemo. I am reading everything I can so I can be prepared for anything that happens. I told him about this website and he read the home page and read the statistics and would not have anything to do with it. So I have been sharing with him the info I saw worth noting in my hours of reading the forum. He seems to think rad and chemo will be no big deal and that nausea and pain meds will not be necessary. Is this normal? I want to strangle him! I tell him he needs to pack on the pounds since he is 6'3" and weighs 182lbs now. He started out at 215. He was in alot of pain before surgery and couldn't eat much. He is not concerned at all and feels he can maintain this weight no problem. I thought the superman thing was over when he was diagnosed with cancer. No such luck. Sorry I am going on and on but I am frustrated. I would also like to know what to expect as far as how much he will need me during the rad/chemo tx. He keeps asking me when I am going back to work. I am thinking week after next. I have been so distraught over everything that has happened in the last 4 weeks that I don't think I could work if I wanted to. I would appreciate any thoughts you have. Thank you.

Valerie, welcome. I don't know if there's an easy answer as to how you can convince him that rad and chemo will be rough; I guarantee he will discover exactly how rough they are all on his own.

He won't likely feel too many bad effects for the first couple of weeks, but when things start to turn, he will be sick; much sicker than after surgery in all likelyhood. Sense of taste will go away, mucositis and thick mucous will begin, he will be incraeasingly tired, nauseated and lose interest in eating or drinking.

He will be, in all likelyhood, a very sick guy, and it will last for some weeks, even after treatment ends. I can tell you from personal experience that it will not be something he can ignore, nor do much about. He will need your help on an increasing basis.

I had 17 hours of surgery, followed by a heart attack during the first 24 hours after I left the operating room. Comparitively speaking, if I had to do anything over again and could pick between the surgery or another round of radiaiton, I wouldn't hesitate for a second; the surgery was the easy part of the treatment.

I wish you both much luck. He has a tough battle still to fight, and he will need a lot of help from you
Wayne

Hello, Valerie.

I too, had rad and chemo following surgery. I was fortunate in that my husband drove me to all appts., but I could easily have done it myself for the first four weeks. Then, although I did not experience any nausea, I was very tired. My mouth was sore so all feeding was via PEG, and toward the end I had the thick mucous and was on some serious pain meds for burns, which would have made me not the best driver on the road.

Living with a strong minded husband (understatement), I would urge you to go back to work for at least three weeks. It will do you good to return to routine, and it will help him also to be able to do things himself. There will come a time when your help is needed, but I suspect it will be good let your husband do what he can while he can.

I don't pretend to understand the male ego, but I have learned to work around it (grin).

Hi Valerie, & Superman!!

I think Wayne said it all. Yes, real easy for the first few weeks of Radiation. Tell Superman to get ready for the Kryptonite!

As for your self.. Take a deep breath. Take each step as it happens. I know easier said than done.

The more you understand the better you will know what to do and when. So keep reading and go back to work until it is really time to help your husband.

I am sure there are many here that have had the same situation with husband. They will be more than happy to help you work through it. So hang in there and know that we are all here for you.

Take care,
Diane

Valerie: Thanks for reassuring me that my man is NOT the ONLY ONE who thinks he is superman! He will begin 30 IMRT tomorrow morning, and chemo begins on Friday...He thinks it's 'no big deal' and of course doesn't want to hear ANYTHING negative!

DO stay in touch and let us know how YOUR superman progresses! Email me if you wish:
[email protected]

Lois & Buzz in NC

i can only tell you what i did in your position and i cant say if i was right or wrong.
I attended every treatment and appointment robin had both the ones he didnt need me too and very quickly all the ones he most definately did.He never asked questions ,never relayed any information he got, never remembered what the doctors said and basically if i hadnt been sat in on every moment i would have gone mad and driven him nuts with my constant questions.I needed to know every minute detail so i could digest and analyse it,and at the end of the day he only got to day three before he was in real trouble.
He never thought for one minute that the rad tx would be anything other than a complete walk in the park ,and the reality devastated him beyond belief.He shrugged off the surgery as if it was a tooth extraction and expected to do the same with the rads,but everything we were warned about and more hit him like a train.

You must as i did do what is best for you and you will make that decision when the time is right.

liz

Hi Valerie,
My mom just completed rad and chemo tx's a few wks ago. She did terrific the first few weeks and then about the 4th week in she started to get very tired. We took her to all of her tx's because she needed to take ativan prior to rads. She is extremely claustrophic and couldn't bear being clamped down. We are also close to an hour from the CCC we use. It was very taxing. I think if she could have driven herself in the beginning she might have felt a little more independent. That was one of the hardest things for her, having to give up part of her independence. She thought she drove fine a few hours later, but honestly, she was still quit high from the drug. From a caregivers perspective--there is going to be plenty of times where you will be needed. I guess that is a decision you need to make, one that you are comfortable with. Good luck, I know it's not easy deciding what to do...or what not to do.
I know, as I am still going through all this with the next step coming soon.

Thank you so much for all your support and suggestions. I will plan to return to work week after next and plan that in a few weeks to take some more time off. I know that you all will be such a great source of support. You already have been. Thank you again and I will keep you informed.
Valerie

Valerie,

Sometimes our "Supermen" need to show their independence. If you hover too much they start feeling like you think they can't do anything and that can affect their ego. And during this time they sometimes need to hold onto any ego they can muster.

It is a real balancing act for you to be there when needed but to not smother. No one should attend an appointment with their medical or radiation oncologist alone. It is too much for one person to digest - so be pushy in that area. You can research and be ready to ask the questions that you both need answered. And sometimes to push the patient to tell the doctor the real truth about pain. Men especially often want to say they are fine and don't need anything stronger than a tylenol - well - that's not gonna cut it during the last part of radiation treatment.

You need to remember to take care of yourself. This is a long journey and it is easy at first for the caregiver to completely lose sight of themselves. Once again, that is a careful balance. As a caregiver you will sacrifice yourself to help your loved one, but remember that you can't help them if you are so tired and frazzled that you can't think straight.

Take care of yourself. Start thinking now about who you can ask for help later on. And when help is offered - TAKE IT. I don't think I would have made it through this far in the journey without the support I received from here.

Take care - take a walk - take nap. You'll need them.

Valerie - i'm so glad you found us! There is lots of good information above. My son also said that between surgery and radiation, the surgery was a piece of cake! He wasn't much for sharing information until I insisted on keeping records of medications, Dr. appts, etc. During Tx, he did go to some appts by himself and as time went on, I went with him and he drove but near the end he "let" me drive. I would always ask him if he wanted to drive (so he could feel in control) but he did complain about my driving. However, a few trips of trying to drive and throw up at the same time convinced him it might be a good idea for me to drive. It is important to take care of yourself so you can be strong for later. Daisy makes a good point about having someone else there for appts with the medical or radiation oncologist. When my son's cancer team got together and then with us, my daughter and a nurse friend of ours and I were all there with my son, and it really helped afterwards to share information about what we understood from everything that was said. Hang in there, Valerie - it's a rough ride but you and your husband will get thru it!