I know that my friends and relatives just want to help, and they probably don't know what to say, bu
JustGrateful
Member Posts: 72
I appreciate their concern, I am happy to have them stop by and check on me, call, text, and all the other things that they do that actually are a help. But some of the things that people say, suggest, and in some cases are pushy to a point of demanding that I "try this" instead of that poison. Or a couple of them have insisted that I go to their doctor because he is so much better than mine.
What do you do to make it all stop and just get the love and support? I'm to the point that if I can't get just that, I don't want them to come around anymore.
What do you do to make it all stop and just get the love and support? I'm to the point that if I can't get just that, I don't want them to come around anymore.
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I am 50 years old and still have a "helicopter mom" who was insistent that I get a second opinion and see a doctor that "she" knew. I told her I had checked out all of my doctors and they were all well thought of and respected. She met all of them. I know this isn't probably feasible for "friends" and your situation.
I say all of this to say that I just told people that I was confident that my treatment team was the best team for me, that I was confident that they would make the best decisions, and pick the best treatments for me.
Just tell them that everyone's cancer journey is different and while their doctor and their treatment and their alternative treatments may be the best for them, you are confident that your path is the best one for you. Tell them you appreciate their concern and care, but you are confident you have this under control. If something they mention sounds promising, try it. If it sounds like something you want to try, but need doctor's approval, then talk it over with your doctor.
I will tell you that I did speak up and tell people they were bombarding me with information and suggestions and it was really all getting a little overwhelming for me. I think they realized they were stressing me out more than they were helping.
I wish you the best of luck in finding some balance between accepting the kindness of friends and protecting your sanity and peace of mind.0 -
Hmmm. It seems that they are going to save your life if it kills you! Well, you could screen calls and allow them to go to voicemail. You could set your email for an 'out of office' response. I believe that both would allow you to leave a message that you were doing just fine; that you will call if need arises and that you are grateful for well-wishes, warm thoughts and even prayers. Maybe post a "Taking a nap - doctor's orders" note on the front door.0
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After a co-worker showed up on a Saturday morning at 8:00 with a batch of stuffed peppers (she asked if she could make us dinner and I clearly said " I would let her her know when, my mom and sisters had made us meals for 3 weeks and I was not ready for more food," I sent a message to all of my friends that said "I really can use your help. This is what I need right now: a card in the mail letting me know you are thinking of me. Thanks to you, my wonderful support system, we are stocked with meals for 3 solid weeks, or more, I've had multiple opinions and my doctors have all been thoroughly researched and are among the best and they are insisting rest is critical to my health and healing. Food and doctors are covered and I am open to a text or phone call on Monday or Wednesday (my "feeling good days.") Thank you all for being there for me, I could not get through this without your friendship and support.
My best friend then followed up my message by replying to all that she would coordinate meals when we were ready for them and to let her know if anyone wanted to be on the list. This helped tremendously.0 -
All good ideas! And, you are right that most of our friends don't know what to say, or don't know that there is a difference between our oncologist and their kids doctor who fixes runny noses.0
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You are lucky that you have a support group of friends & family, they mean to be helpful and are trying to do what they think is best, even if you might think it is not. Sometimes others just don't know what to say to someone who is going through a rough medical experience.
At the other end of the spectrum, many people here have complained that their family & friends leave them alone and are no help at all. They feel deserted.
A happy medium is difficult to achieve, and some of the above suggestions are great.
Teachergirl--- Wow, what a nice idea to keep you supplied with meals, now try to get a few friends
to clean your house!
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@Teachergirl, I am so glad that you posted about your best friend doing a "reply to all" to help coordinate. I was going to suggest that if there was one friend who was a super organizer OR one friend who is the best at "crowd control," maybe that friend could be the gateway person for you. It does get so overwhelming at times to have people offering you advice and strong suggestions. Then what if you really do want to follow that suggestion but maybe your insurance doesn't cover visits with that other doctor, or maybe it doesn't cover that other treatment. Then you start feeling bad and wondering "what if." Maybe their doctor doesn't specialize in your form of cancer. Maybe their doctor is more aggressive or less aggressive in treatment options, and maybe that's not what you need.
Having one friend who can help you coordinate might be very helpful.
I might also suggest that you or one of your friends consider starting a Caring Bridge page (or maybe a private invitation only Facebook group) for you or a social media maven friend to post progress and thoughts and encouragement. It might be a good way for people to check in on you, but also a good way for you to receive "suggestions" on your own time frame. If you don't like them scroll on by and no-one is any the wiser.
@Molly, I am very much on the opposite end of the spectrum. I feel like after I had my mastectomy, I was dropped off a cliff and forgotten about. All of those friends who said "We will be there for you??" yeah, they all dropped off the face of the earth. Not a single soul willing to take me to a doctor's appointment or even to just walk over and drag my garbage can out to the curb if my husband forgot to do it the night before. Those friends who said they would pick up groceries for me? Ha.
The world shut down from COVID just as I was ready to go back to work. I guess they all just think I am okay because I went back to work. I didn't have any choice.
@JustGrateful, as Molly said, it's a hard balance finding a happy medium between friends smothering you and friends abandoning you. I hope you are able to find what you need.0 -
@JustGrateful, you are so right. Some people just don't know that there is a big difference between types of doctors. Heck, there are even different areas of oncology. I was going to have a radiation oncologist and a medical oncologist. Some oncologists specialize in hematology. It's a crazy world we live in.0
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My husband’s work gave him a month off with pay to stay home with me. Best gift ever! He kept everyone at bay, gave them updates and scheduled visits, food and calls. I don’t know how I would have managed it all. I was so overwhelmed at the time. Now I know what to do if he needs me to do the same. If you have anyone who can be the coordinator for your recovery time that’s a great way to answer the question of what can I do to help you?0
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I love the find a friend to be the go between. I did that and still do that for a bf with stage 4 breast cancer and now stage 2 colon cancer. I coordinated drivers to radiation and some food. (She is fabulous cook so really only wanted a little). I was diagnosed 3 months later and now, 4 years later, have only told a very few people due to this avalanche. If you don’t have that friend, write a note to these overwelmers. Honestly express your gratitude for support but your need to be supported in your choices, not avalanches by other opinions. Hugs!
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legaljen-- I know how hard it is not to have support during sickness, and feel empathatic for you. I belonged to a group of women in the neighborhood who met every month for card games.
Only one visited when I got home from the hospital and helped out, the rest forgot & did not even bother with a get-well card. They acted as if cancer was catching!
So it is really interesting to see how others react to illness. I wonder about all the people now who had Covid, somehow I imagine they were pretty much left alone for a LONG time.
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My friends, for the most part, also disappeared. I don't know that that would be the case now that I am pretty active with a church group, but I don't really know. I had one friend that I worked with that insisted on bringing a few meals but otherwise, no one checked on me, no one sent a card, no one did anything. On the other hand, I was determined to keep life as normal as possible so I continued to work AND I continued to go to agility practice and trials as much as I possibly could (even if I had to be driven to and from because I was too tired to drive home afterwards). Maybe no one thought I needed a card or food.
I did have a few people who wanted to tell me what I needed to do to be cured ... and to them I said, "I have a really great doctor and for now I am going to listen to them."0 -
If you belong to a church you can ask to be added to the prayer list and also outline what would be most helpful to you. My neighbor enjoys drop by company, so when she went through her cancer ordeal she asked for people to stop by (they did). I, on the other hand, love people and social situations, but I have NEVER been a fan of people dropping by unannounced - ever. I was able to express this via the prayer list and suggest email as the best way to communicate with me. Everyone did respect my privacy - once someone left me a pumpkin spice latte on my porch because she knows I love them! I was grateful. I always feel like I need to entertain people when they are in my home, and when I was going through chemo I just didn't have the oomph. I did keep everyone informed via my Caring network pages and my husband oversaw people wanting to bring meals - I am grateful for that help, for sure. And I got a zillion cards. I was surprised how much that helped.
Justgrateful, I hope you can find the balance you need, we all need to do it differently, don't we? People can be such a blessing, or a source of angst and this is a time you cannot feel guilty about putting your needs first. Get yourself through this - whatever it takes.0 -
Over the course of 32 years, I've heard some doozies of things people want to suggest. But now, since I'm kind of known as "that cancer guy" around here since I've had it more times than anyone in my little town and all surrounding towns here. And with all of the cancer advocacy that we have done over the last 15 years or so people figure that they probably shouldn't recommend something to me that's out there.0
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I think you have to kindly let your friends and family know that you are the one in control here. Be up front and blunt if you have to. I was very clear from the beginning about when I would have visitors, how I would rather have texts first vs phone calls, etc.. I luckily didn’t have many who tried to push their medical opinions on me but when I did I thanked them and assured them I was comfortable with my plan and didn’t need direction. I also had one friend and one family member who were my go to people and they deflected a lot of this so I didn’t need to. That was a big help.
That left room for just the love and support I needed. Good luck!0
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