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I came this close...

Brenda Bricco
Posts: 579
Joined: Aug 2011

to telling a family member where to stick it today... I ran into her in the mall when she sounded off at me about how upset her and other family members are that my husband isn't having chemo while he is in between surgeries. I realize she doesn't understand the strategies of his cancer team, (I don't either until I ask) but I am not sure how many more times I can bite my tongue and be nice while I am being hazed by some well intentioned family member. The more I thought about it the madder I got... I put on a brave smile and go through my days the best I can but my heart aches every minute for my husband and what he is going through. It's on my mind all the time and it takes everything I have to not be sad or thinking the worst. I really didn't need that today, not sure it was helpful.

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Maybe explain that the doctors have a plan for your husband and that you BOTH have faith in their judgement. Often they do not do chemo prior to surgeries because they can cause issues with bleeding.

I know people often have to put their two cents in even when they know nothing about what is going on. Do you mention this to your husband or do you not want to bother him with this? If he does know what his family members are doing, maybe he could ask/tell them to back off.
It's really the last thing you need I'm sure...
-p

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Yes...people can say things that they really have no idea what they are talking about. They may think their 2 cents makes perfect sence....but really they don't have any idea. I'm proud of you for keeping your cool. But if they continue to bully you....I got your back!

Gail

Brenda Bricco
Posts: 579
Joined: Aug 2011

I think just posting this made me feel a little better. I know they mean well but I don't know if they realize how hostile they get toward me.
The doc that is head of our team explained that they do not want to risk damaging the liver with chemo before the resection (possibly making him inoperable). Another really good reason is the bleeding factor with Avastin (has to be a period of time between Avastin and surgery).
I know they love their brother but they need to realize how much I love him. They are not around much to visit or anything for that matter so when they get witchy with me it makes me want to get off my broom and really give it to them. lol I did tell my husband that I am going to insist that she take the 6 hour ride to see the "team" from now on so she can ask all the questions she wants. He said that was a great idea (knowing she wouldn't want to).
This has all made me a very different person, private in many ways (as I post about it to all of you - because I know you get it), hard to know where the next punch is coming from. I think that is what threw me... I was out trying to enjoy the Christmas season with my girlfriend when she blasted me in front of Bulid-a-Bear. That was her last free punch though, I won't be so nice next time.
Thanks for listening...:)
Brenda

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

You go girl, sometimes you need to come out and tell them how it is... Petrina

laurettas
Posts: 372
Joined: May 2011

Just had a conversation with one of my brothers on Thanksgiving. I told him about Jake's PET scan and how well things were going. His reply was that maybe now was a time to look into alternatives. I'm thinking to myself, "Are you crazy? Things are going well, why would we want to give that up to try something that we don't know if it will work for him?" We had quite a discussion about it. Yes, people are quite good at giving advice and sometimes you just wish they would keep it to themselves!

ketziah35
Posts: 1154
Joined: Jun 2010

I have told people to stickit! Get the fk out pf my mother's house and they have 3 options, to leave by themselves, have option of me having the police to remove the or me physically removing them. It is none of their business!

One quick way I found to shut people up is to tell them I will make sure we cll them to sign up sit with the patient or we will make sure we call them to help with the bills. Since. They have so much of an opinion then they shouldn't mind contributing.

P.S. My personal per peeve is that I cannot stand nosey people!

buckeye2
Posts: 428
Joined: Jul 2011

I have become sensitive to people's comments also. We are operating under a lot of stress. In my rational times, I realize that keeping family informed and together during this difficult time lies on my shoulders. Knowing your role makes it easier to operate effectively. We all need every family member and friend we ever had at this time. I have always been Miss Independent up to this point selfishly fearing that if I let someone do something for me that I would be placed in the vulnerable "owe" position. Well, I am there. I know that there will be a time when the chips are called in. I hope I will be ready. Lisa

laurettas
Posts: 372
Joined: May 2011

I know what you mean. I try to remember to let the pertinent family members know the news each time Jake has a scan, a treatment, whatever so they don't have to worry. His family has been great about accepting what the doctor and us decide as far as treatments. My family has the more opinionated members!! Which is easier in some ways because I have no problem putting them in their place.

We have had to learn to let people help us since we have a small farm and Jake just doesn't have the energy or strength to keep up with everything we have to do. One day we were putting up hay and had a problem with a piece of equipment. It needed an "adjustment" that none of us had the strength to accomplish so I quietly called a neighbor to help. Jake was upset at the time but later admitted that he didn't have the capacity to fix the problem. Very humbling for him because he has always been the "fixer" for everyone. But I know that we have helped others when we could so I don't have a problem with asking now when we need help. Better than keeping the burden on Jake when he just doesn't have the capacity to do some things. All learning experiences for everyone.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
".......I ran into her in the mall when she sounded off at me about
how upset her and other family members are that my husband
isn't having chemo...... ......I am being hazed ......"

Well..... now you know how it feels to be any one of us that
went an "alternative route"!

Only we don't just hear it from "family and friends", we also
hear it from physicians and nurses, all suggesting with the
force of the Almighty, that we will die from our ignorance
and stubbornness by refusing to cave to the industrial standards.

It's difficult enough to live with a diagnosis of cancer, especially
when we finally allow the information about our possible demise
to sink in beyond the initial state of denial..... but to have individuals
continually insist we're not doing something right?

We all are -very- sensitive regarding our choices and our
treatments, and we all forget that anyone doing other than
what we might feel is good, should be "advised". I do it, and
others do it as well, right here at our "safe haven".

It's just people caring about us as much as we care about them.

Our friends and family are not trying to "sell" us anything or push
any agenda, they just don't want to see us die, and are hoping that
they can save us with some information we might not have.

It's just people that really care, Brenda. They're scared for us,
and simply want to help.

I try to keep that in mind when trying to provide some information
to someone, but it's not always easy to type words out with exactly
the right amount of sensitivity....

I try to keep that in mind when some gal (or guy) mocks something
I put forth as a possible life-saving modality, as well.

It's just people caring about us as much as we care about them.

Best wishes,

John

Brenda Bricco
Posts: 579
Joined: Aug 2011

"I try to keep that in mind when some gal (or guy) mocks something
I put forth as a possible life-saving modality, as well".
I am not sure how mocking could ever be percieved as anything other than hostility. We all are entitled to our choice of weapon against cancer. It is never okay for anyone to mock anyone. You are very nice to try to receive rude behavior as some peoples way of caring, you are a bigger person than me.

I completely understand the fear or misunderstandings some friends or family might be experiencing but that does not excuse stopping someone in a public place, rudely demanding to know something. I believe anything you do should be done in love. I do not receive hostility as love...ever. If someone was that upset or confused with what the plan was they can call or stop by and ask us to help them understand anytime. This is an immediate famiy member that has gobs of oppurtunities to ask us anything. They might be afraid of sometime down the road of seeing me without my husband but maybe they are forgetting that I stand to have to be me without my husband. I want my husband by my side for my whole life, if I lose him, I lose a part of me.
I can understand fear but rudeness is just never going to be acceptable. They might want to remember that I am a fighter.
God's blessings to you my fellow fighter. :)
Brenda

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

a woman in her 90s who knows everything. "I never heard of chemo that lasted for 3 days. When my friends get chemo, they go in for a few hours. None of this nonsense about taking chemo home with you. You should find a doctor who knows what he's doing!"

My reply: Um, I did, Aunt Cathy! And this is the chemo for my cancer. (By the way, did you know that I also had chemo directly into my belly. I bet you've never heard of that either.)

Yes, tell relatives/others that you are working with medical professionals, and they have a plan that you are working with.

I know how frustrating it is.

Alice

Kimo Sabe's picture
Kimo Sabe
Posts: 64
Joined: Aug 2011

About two months ago a well-meaning ignoramus relative told my daughter that if I wasn't losing my hair then the chemo wasn't working. I should do something differently. Well, fortunately or unfortunately I have since begun to lose my hair so we can all rejoice.

I'm thinking maybe I could get a job advertising lingerie Ala Joe Namath and not have to even shave my legs first.
Norm

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

I laughed when I read this, except that it is a sad commentary. We'll all rejoice with you as you lose your hair. (I lost my body hair on Folfox, but kept the hair on my head. I guess my chemo was a waste of time and money.)

Thanks for sharing!

Brenda Bricco
Posts: 579
Joined: Aug 2011

Wow Norm, that is a new one. lol My husband didn't lose his hair and his tumors shrunk by 80%. Things that people say... you made me giggle,so thanks for that!
Brenda

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear brenda,

this is what i have done.
only let them back on if they promise to behave.
and then put them in the back seat.

the challenge of crc goes into every facet of our lives,
focus on your priorities and don't let nasty comments rattle you.

how can they know what your crc journey is like ?
smile at their peaceful ignorance. i wish we were all ignorant of this dammm disease but
alas crc is our challenge and your family and friends response to your treatment choice is just a part of it!

hugs,
pete

eibod
Posts: 160
Joined: Mar 2011

Brenda, I understand how you feel. It is amazing to me that people can say things without
thinking. Someone asked me why I wasn't working anymore, "is your husband that sick?
Another one told me "you know what is going to happen, but you are a strong person, you
will be fine". Fortunately, these weren't family members, so I could ignore it as
stupidity. But, the hardest thing for me was when I called and asked for a reference
from the onc. office for someone to talk with. They said they had references for the
patient, but none for the caregiver. Sometimes it feels as though I am stumbling in the
dark all alone, someone switched off the light at the end of the tunnel!!!!!

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