Well-meaning suggestions

[MichelleS]

This may be an old subject, but we are new to this forum. My husband was diagnosed 4 weeks ago with Stage IV NSCLC and has taken his first round of chemo/Keytruda.  As friends and family are informed, many of them ask if we are going to this or that treatment center, taking this or that "cure". I am sure others have dealt with this.  How do you handle their suggestions? I have trouble, even knowing they mean well. Do they really think we or anybody would turn their backs on anything that offered the type of results they believe have occurred? Or even would go so far as to  withhold those miracle treatments from the people we love and support on a daily basis? Maybe my anger is displaced, but I do have a hard time remembering that they only offer such suggestions because they care.

[LexieCat]

Hi, Michelle, and welcome.

I'm sorry about your husband's diagnosis.  The good news is that we have several people here on the forums doing VERY well with Keytruda--it really can improve the response.

My cancer was Stage I, so I had to deal only with surgery.  But I do know what you mean about the "well-meaning suggestions" of family/friends.  I'd suggest you simply smile and assure them of the great confidence you have in your medical team, who are using the very latest/greatest treatment protocol (true!).  And if they continue to bombard you with suggestions, you can tell them that while you appreciate that they care, it isn't helpful for you to have to keep explaining your treatment decisions.  If their feelings are wounded, oh well--they will get over it.  Seriously--you guys need your energy to deal with what's already on your plate and sometimes you do have to be firm to protect your own sanity--this is a tough enough ordeal without having to placate everyone else.  My bet, though, is that most of them will back off.  Remember, this is very new, and a scary shock for them, too.  If you project confidence in your medical team, it should help them accept that your husband is in good hands.

Hang in there.  Glad you found us--this is a great place for information and support.

[LexieCat]

Oh, and one suggestion.  You didn't do anything wrong, but you posted here under the SCLC forum, which focuses on small-cell lung cancer.  There is also an NSCLC forum, which is where you will find more helpful information relevant to your husband's diagnosis.  As I said, it isn't a problem, so don't worry about it--I just want you to know where to find the most helpful information here.

[Rower Michelle]

Hello Michelle-

I was also diagnosed at Stage IV NSCLC.  The first few months are really tough.  My friends & family felt so overwhelmed & powerless when we told them about my cancer.  They were just as freaked out as we were; desperate to help in anyway they could.  I’m six months into this & some days I think I’m coping better than my friends. They can’t hide the shattered look on their face when we get together.  I set out every day & try to do something fun.  Eventually people will take the cue from you but at the end of the day your energy stays with your family.   This is part of the initial diagnosis and it will settle down.  

I accepted all gifts graciously & gratefully  then threw out the weird stuff (after consulting with my pharmacist). 

Michelle

[Steff]

Hi Michelle!

Glad you found us and glad to hear about your husband's treatment plan.  My mom's treatment plan for her most recent LC recurrence was chemo (alimta + carbo) and Keytruda.  She did 6 sessions of the combo and then went on to Keytruda only.  Her treatment lasted a little over 1 year and she is now on a treatment break for the foreseeable future due to side effects and that she has no evidence of active disease.  Feel free to check out my posts about my mom's treatment journey - it may provide some perspective on what your husband may have to deal with as far as side effects, etc.  You can find it  here.

As far as dealing with well meaning friends and family, my friend Danielle has a great suggestion that she uses when overwhelmed by all of the well meaning....I hope I can convey it here.  When someone would come up and say "I'm sorry to hear about your mom, I've read that taking ____________/has she tried ___________/etc, etc.  Danielle would respond with "Thanks for the suggestion, we need help with dinner on Thursday, can you bring over dinner? -or- my mom needs a ride to her appointment next week, can you take her?  She not only was able to quickly change the subject, but also get help with the daily needs of her mom.  No one seemed offended and the well-meaning person was actually able to be helpful.  Maybe this can help in your situation.

Take care,

Steff

[LexieCat]

What a terrific suggestion, Steff!  I love it!  Diversion often is much more effective than opposition.

[Steff]

AND you might even get a great meal out of it! lol

[Curt]

I like that suggestion Steff.  Most people who want to be helpful have no idea how to be.  Especially with illness.  They want to help but feel powerless.  Being vocal about how they can help is great, and it weeds out the people who really aren’t trying to help.  Cooking, offering rides and CLEANING for someone is way more helpful.  When my father was sick my step mom would get so upset because people would always want to visit but it would just make more work for her having to care for my dad AND entertain the guests AND have to listen to them tell her what they should be doing differently   It really started to isolate them.  

How about a suggestion form?  When someone starts to give unsolicited advice stop them and hand them a lengthy suggestion form that they can fill out with all the information they’ve found, why they think it’s a good approach and whatever supporting research they’ve found.  Tell them you really want to know more about their suggestion and this is the best way you’ve found to keep track of them.  Anyone who actually fills it out may actually have a good suggestion.    

How about put all your daily and weekly things to do on pieces of paper in a box.  Anyone who wants to offer a suggestion needs to draw a task from the box first.  You can call it a suggestion box.  They can put their suggestion in the box after they pull your suggestions on how they can help out.    

When my father was sick my step mom, my brother and I provided all of his care   I felt like everyone else in the world were inconsiderate A holes who didn’t know what we were going through   Looking back on it now I realize that they really didn’t know what we were going through, but that wasn’t their fault.  They were coming from a good place, just not executing it well.

Hang in there.