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Well meaning family and friends????

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Breast Cancer
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Posted 6/19/2005 12:34 PM (GMT 0)
Hi and welcome JuJu8872.  I am copying your question (below) to this new thread so it won't be lost in the other one, OK?  This is a question that can be quite interesting.  Family and friends can be too interested in getting involved and they can also be the exact opposite and ignore you until you are wondering what you did wrong.  Anyhow, I am certain there will be some reaction to your question.  I was so fortunate I was not over done or under done.  LOL.  My friends were all very supportive during my mastectomy and afterwards.  My husband was great, too.  In answer to your question I think I would firmly suggest they give you space, but I would also give them enough information about your condition to let them know you have things under control, if you do.  And I doubt you would want them to back off if you didn't. I don't know of a book to suggest, sometimes the books have more information than is needed and may worry them more????  Take care and let us know how things are going.  Hugs, Mary K.  (MK)

 I am on my 11th weekly Placitaxel, after 4 A/C and a mastectomy in December. Any tips on how to handle family members who call "the cancer patient" daily with stupid questions. They are finally getting on my nerves. I live alone and take myself to all treatments. Is there a book I can buy for members of my family that will help them be more sensitive to my feelings.

Posted 6/19/2005 12:56 PM (GMT 0)

Hello and welcome! Don't feel like you are all alone with this problem. I know that many of us have experienced the same thing - whether it was right after the diagnosis, after surgery or during treatments. Well meaning friends and family can drive you straight up the wall. The one thing that I found worked for me was being very honest w/ everyone. I told them how I felt and what I needed. If they continued to call constantly, then I just stopped taking the calls. I let the answer machine do its job. There are some family members that I have absolutely no contact w/ now. Remind everyone that stress is not healthy for you and their calls are adding stress to your life. If there is anything that they need to know or anything that you need, you will contact them.

There is a book that I have found to have some great info in it. It is published by the U.S. Dept of Health and Human Services, National Institutes of Health and National Cancer Institute. It is called "Taking Time", Support for people w/ cancer and the people who care about them. I don't see a telephone number or address on the book. I got it from my onco office. There is some great info and I have found it to be helpful.

Hang in there. Remember, stand up for yourself and be honest w/ family members.

Deb

Posted 6/19/2005 8:01 PM (GMT 0)

I had the same problems.  I had some very good friends from work, church and family who called and brought food and checked on me but not TOO MUCH.  I, also, had about 3 friends who almost suffocated me.  I know that sounds harsh but I didn't want to talk about cancer all the time and I wanted to be as normal as possible.  One friend in particular was always calling and wanting to come "sit" with me.  That was fine but she always called when I was going out of town to a baseball tournament with my son. eyes    I kept thinking now why do I need someone to sit with me???  She also called one day and asked me for the name of a Hospice volunteer in our community - I was thinking "Hospice?  How the Heck do I know?  I've finished my chemo and tests and blood work is normal, I'm back at work full time and feeling great....haven't called in Hospice yet!"  HA HA 

I guess that sounds cruel but I just wanted to be treated normal.  I'm just an average, middle-classed teacher who had bc.  Ya know what I mean?  I finally let my husband and boys know who I wanted to talk to or more to the point, who I Didn't want to talk to and they took care of the problem for me.

We know they all mean well and can't do anything else to help but you can't let them stress you too much.

Take care!

Posted 6/20/2005 4:20 PM (GMT 0)
When I look back on how I used to handle a loved one with cancer, it makes me cringe!  I was so needy!  That's the last thing they needed.  That sounds like what's going on.  The suggestion about saying that stress isn't healthy right now, and that the frequent (constant) phone calls are stressful was very good.  Hits them in the head without alienating them.  It means you are telling them you understand that they want to help, but it doesn't help the way they think it does, in fact it's stressful.  You can do this!!!  I have faith in you!   
Posted 6/20/2005 5:17 PM (GMT 0)
Hello, everyone and thanks for your reply. My communication problem with my family seems to be that they are not there for me. They make the obligatory phone calls with the same stupid questions -- every day -- and they never HEAR me when I say I am not well or that things are not going well with the home, and I can not tell you how many times I have helped them with their home projects and more -- especially my sister who is a six year survivor of breast cancer.

Today is a great example of how I feel and how much help I need, but I know they will not listen to what I have to say. As a matter of fact, I am afraid to even repeat it myself. Today I had a visit with my medical onc and my 11th Placitaxel treatment. My doctor will not be doing any follow up tests -- only a visit 4 months from now. Gave me a pres for Adimidex and told me to start 1 week after radiation. She does no testing because blood tests are often false positives and CT's provide info only a couple of months before my physical symptoms start. I asked "In other words, it the cancer returns, I am going to die". Unfortunately, she confirmed this -- she has only a couple of exceptions. This is a well respected teaching university hospital and I am devastated. Can any one offer any hope for me?
Posted 6/20/2005 6:54 PM (GMT 0)
I asked "In other words, it the cancer returns, I am going to die". Unfortunately, she confirmed this -- she has only a couple of exceptions

 

 

Excuseeeee meeeeee???? I don't care what kind of teaching hospital or onco group you are going to, this is totally uncalled for. No onco should give you that answer. I was told by Richard Bloch (H & R Block) years ago when my father was diagnosed w/ lung cancer, that the most important thing that you want in your onco is to find one that feels that he/she can help you. If that onco says that they can't help you or they aren't sure, then get up and slam the door in their face! If I were you, I would begin looking for another onco NOW! My onco has never lead me to believe that we can't beat this. She has said that she can't promise that it may not return somewhere else at another time but she can't promise that I won't walk out her door and get hit by a truck!

Once my original treatments were completed, I went back for checkups every 3 mos. At each visit, a group of blood tests were run, inclu the CEA and the 27/29. After 2 yrs, my CEA had gone from 12 to 29 in 3 mos. This was an indication that that there was some unhealthy activity somewhere. Yes, it was finally found and confirmed by a PET Scan but it wouldn't have been found that early w/out those blood tests

As for your family, to be honest I would NOT call them and ask for help anymore. The stress that it puts on you when they don't offer to help just isn't worth it. My family is the same way. I was the one that was always there for them when something needed to be done but I discovered that both my db and ds are nothing more than spoiled, rich individuals that I am much better off w/out in my life. I have a great group of friends, which includes my dd's, and if I need something done I have learned to just ask. It may not get done immediately but when they have time the job will be completed. Don't be afraid to go outside your family circle. I stopped calling my family and when they called me and asked why they hadn't heard from me, I told them. Straight forward and no words spared. What did I have to lose? Nothing but lots of stress.

Hang in there. Please let us know what you are going to do about this onco that you have. Feel free to come here and gripe anytime. We all do just that from time to time.

Hugs...Deb

Posted 6/21/2005 12:57 PM (GMT 0)
Hello, I am feeling much better today. Perhaps I reported my onco's remarks a little too harshly. It was the gist of what she said, not what she exactly said. I have begun to google research on blood tests and ct scans on the internet.

As an FYI, When is my hair going to come back? I lost it twice -- during A/C and when I had to be a week late starting Placitaxel, what new hair I had fell out again (it was RED) Now I seem to have WHITE fuzz all over, but still no sign of eyebrows and eyelashes that came out twice also.

#12 next monday and I wait 3 weeks before radiation - 33 daily treatments
Have a Great Day

JUJU8872
Posted 6/21/2005 1:12 PM (GMT 0)

I would encourage finding someone who does the blood tests regularly because that's how my recurrence was detected. 

As far as your family, maybe instead of talking to them, write them a letter.  Just tell them how you feel and what you need right now.  Then, leave it up to them.  They may not realize how they're acting.  We all lead such a busy life nowadays that sometimes we don't see the obvious.  If that doesn't get their attention, then just leave it for now.  Your most important job right now is to take care of yourself!!!

As for the hair, it will grow back.  I didn't have the same treatment that you did so I can't offer a timeline.  I had Taxotere - finished in August and didn't take off the wig until Feb. or March, can't really remember right now.

Hang in there - you will make it.  Remember to take care of yourself!

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