Jump to content

Need suggestions please


Recommended Posts

We've just learned that my dad has Stage IIIB NSCLC. He's on two cycles of full-dose chemo (his first treatment was last Monday). If ("WHEN") it shrinks the tumor, he'll be able to go for surgery. The oncologist told Daddy to stay as active as he can, but all he does is sit/lay in his recliner all day and watch tv. He's nauseous and has no energy. Plus he has COPD and is having trouble breathing. My question is: do any of you have any suggestions for things we can do with Daddy at home? He doesn't even feel like playing computer games anymore. I can't stand seeing him just lay there. :(

Link to comment
Share on other sites

Chemo and radiation really wore my husband out. I guess it's worse on some then others, from what I've read here. Maybe your dad just needs the extra rest(?), or maybe he's feeling a bit down in the dumps. (rightfully so too!)

I finally stopped trying to "make" my husband open up and talk about things. He just doesn't want to, so that's where I left it....

Hope he starts feeling better quickly.

Take care,

Nova

Link to comment
Share on other sites

I'm on the same page as Nova's comments. You cannot force them to do something they don't want to do. (They are guys, after all! :wink: )

He was recently diagnosed, so he has a lot of the shock of the diagnosis still with him. Add to that the effects of chemo and you've got a human being who just wants to sit and recover a bit emotionally and physically. My husband lost interest in a lot of things initially. He didn't even watch his beloved Cubs for two seasons (of course they were crummy during that time), but he rarely misses a game this year. All just part of the roller coaster ride of cancer. I know it is hard to see him like this, but it isn't unusual.

Breathing is a BIG issue for those "lung impaired" and I've seen it create real fear in my husband. It's a great thing that your Dad will be a candidate for surgical removal, so I'm sure things will get better.

Regards,

Welthy

Link to comment
Share on other sites

Thanks to both of you. I just hear so much about depression and don't want him to go that route (I'm a victim of it myself). I'm used to seeing him on the go and it's really hard to see him just sitting there, not wanting to do anything or go anywhere.

Thanks for your help.

Link to comment
Share on other sites

COPD is a very serious disease in itself and then add lung cancer and it's over the top. Shortness of breath comes from COPD and can be from the lung cancer, not to mention from his heart. Being he is working so hard to breath I'm sure his heart is also working overtime. There is nothing worse then shortness of breath. It SUCKS!

Please don't push him to do anything. It's very hard on us (LC patients) at first to try and pretend like life is normal and everything will be okay. I can assure you that your dad is not on that page right now. He's in the beginning stages of this journey and for now all he needs to know is this doesn't have to be a death sentence and that many many many other lung cancer survivors do survive this disease and that he too can very well be one of those survivors.

When I went through my treatments and the first year of being a lc survivor I was scared out of my mind. As I'm sure your wonderful dad is. I too could not think straight nor could I consentrate on anything going on around me. Reading, games, cards,etc., nothing interested me in anyway shape or form during those early days. Please just offer your dad some much needed TLC and let him do what he has to do to get through this.

Maybe it would be helpful for your dad to talk to another lung cancer survivor if there are any in your area. You can find this out at his Onc Doc's office or check to see if there is an inperson group near by.

Best wishes to you and your father.

Link to comment
Share on other sites

Thanks, Connie. I'm really not trying to push him. I'm just worried about him. He tells my step-mother (when my brother and I aren't around) that he isn't going to continue with the treatments. I just feel so helpless! I know he's scared and a LOT of things are going through his mind, and I want to be able to fix it for him! It breaks my heart!

Link to comment
Share on other sites

Sylvia...

My mom, from the start, would flip-flop back and forth between wanting to continue treatment and not. Ultimately she chose to treat and do it aggressively throughout her battle. However, after her passing we were each given a copy of her journal entries and there, in black and white, over and over again, was the same flip-flopping. I can't imagine what it's like for the patients, to be having to make those decisions.

I know wanting to "fix it"...but for now what you can do is love him, listen to him, and remind him when he's down that you're there.

Much love and many prayers as you all adjust...

Link to comment
Share on other sites

I just wanted to let you know that you and your dad are in my thoughts and prayers.

My dad was very sick with his treatments too and didn't do anything. I also believe anxiety and depression play a huge role in anyone who gets a LC dx. We tried many meds to get the nausea under control and we took baby steps.

As a family, we took him to parks and the zoo and shopping (with walker or wheelchair) and we had alot of family get togethers. Also, anti-anxiety meds that helped him sleep at night did wonders too.

Take it at his pace, let him know that you are there for him always.

Link to comment
Share on other sites

Not to take issue with your sig line chronology, Sylvia, but are you sure your doc said "36 months max?" Does that mean that if your dad is still ticking at 36 months the doc is going to put a pillow over his face? It is incomprehensible to me that a doctor could say that from a medically confident standpoint. Especially given the fact that 36 months=3 years=an incredible amount of time for new therapies to come online.

Mind you, this time 3 years ago, Avastin and Tarceva were both FIRST being introduced. http://www.roche.com/home/science/sci_mile.htm

It's one thing if a doc says, "He will die this week or next." When the doc says that, barring miracles, its time to prepare. 36 months max? Screw that.

Sorry for the rant, just caught my eye.

Link to comment
Share on other sites

It was quite a shocker to us too! He actually said Daddy has 18-24 months, and another 12 with treatment. :shock:

He also told us that he doesn't think the full-dose chemo (Taxol and Carboplatin) will be able to shrink the tumor. The surgeon is the one who has pressed him to go this route.

My Dad is a pretty stubborn person sometimes, and doesn't want to get a second opinion or start all over with another oncologist so here we are with this one. :roll:

Link to comment
Share on other sites

I understand that. You might consider developing a rapport with the onc. via email, and when the time is right suggest he never discuss prognosis and "max dates" again as your dad needs positive reinforcement and that sort of medical fortune telling while perhaps impressive is the last thing a fighter needs to hear. Its ok if I know my car warranty expires at 150,000 miles no matter how good its running now or even then. Not so helpful when you're talking about my dad.

Our onc. is a nice guy, but it hasnt been until recently that he has started to to take an approach that has encouraged my dad. He is getting invested in him. But he didn't get there by himself though.--If you're sticking with this guy, tact is the key, but you need to get this guy to invest in your dad's long term cancer management.

Link to comment
Share on other sites

Sylvia:

Adrian made some excellent points. Please read this discussion thread on onctalk.com -- all of it, including the questions and answers. It contains some real eye-openers on communication between onc and patient/family:

http://onctalk.com/2007/05/29/discussin ... -oncology/

I spend as much time on onctalk.com as I do here. Both sites are top notch, one of a kind, and complement each other remarkably well.

Please keep in mind that with recent advances in treatment, lung cancer -- including NSCLC IIIB -- is no longer a death sentence. The fact that they're even discussing the possibility of lung surgery is a positive sign. I doubt if I'll ever be a candidate for lung surgery, yet I expect to be around for a long time and die of something else eventually.

Best wishes and much Aloha,

Ned

Link to comment
Share on other sites

Thanks! He seems to be a nice guy but I just got a bad feeling when he didn't give Daddy much hope. We want to know all the facts, but I firmly believe that attitude plays a big part in recovery and I don't want him saying anything negative that Daddy will take to heart.

When the doctor told us he had 18-36 months, Daddy said, "Well I'm shooting for 70." He's 68. Every time I talk to him, I tell him about all the wonderful people I read about on this site and others who have beat it and gone on to live many, many years!

Link to comment
Share on other sites

YES! There is something you can do-print off posts from this site and read them to him. The wonderful people here gave my mom so much encouragement and hope that it made her come around, boxing gloves and all, ready to fight. At first, she would just continue watching her TV show as I was reading, but then she'd hear something that would spark her interest and eventually, she would look forard to hearing how everyone was doing. She herself only came here once but she was very sick by then, but I just read stuff and if she ever seemed annoyed, I'd leave them on her bed so that she could peruse when she wanted. It is something...

Link to comment
Share on other sites

Hi Sylvia,

First I want to welcome you here but sorry you had to find us.

You certainly have received so much valuable advice from our members on here.

I do not like the fact that you dad was given a time line especially one so far in the future. That SUCKS and was not necessary. So many things can happen in that time frame. LC is NOT necessarily a death sentence. There is so many treatments out there and if one does not work they will try another. Also, if he does become a candidate for surgery that is Wonderful as only 1 in 4 is a candidate for that. So there certainly is hope there. I just wish his Onochologist felt more like the surgeon.

There are many stories on here from our survivors who were told time lines and have beaten the odds and are doing just fine.

We are always here for you 24/7 for any questions you may have, support, prayers or just to vent. We have strong shoulders to help you carry the burden through this. You are never alone.

Keep us posted on his progress. Just give him time to get use to his new norm. Keep a positive attitude and give him lots of TLC.

Maryanne

Hang strong! This is all new to him and once he starts treatment he should start to feel better.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.