If you can't say something nice...

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  • percy4
    percy4 Member Posts: 477
    edited February 2014

    I am lucky about this.  One friend is taking me Mondays, one friend Tuesdays, my son (he lives in the City without a car, so will take the bus 25 miles out here Tues. p.m.s and spend the night ) Wednesdays, and my 81-year-old Father Thursdays.  Fridays I still have to cover.  Am waiting to hear back from the Catch-A-Ride volunteer program through the American Cancer Society.  While I drive in town fine, I have a true freeway phobia, and, in the rain, honestly could not do the one-hour drive safely.

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  • Hortense
    Hortense Member Posts: 982
    edited February 2014

    I realize that you would prefer not to drive, but if you find yourself in a jam without a driver, you could. I drove myself an hour and a half both ways every day on major highway. I made each day fun by going for lunch or shopping in different places, or just touring in the car on my way home each day. I got tired toward the last week, but just went more slowly. The radiation itself takes such a short time. 

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  • wyo
    wyo Member Posts: 541
    edited February 2014

    Hi all

    It would be nice to see a picture of that handbag- I have a handbag fetish- perhaps you might make it your avatar to cheer us all up LOL

    Seriously- Ballet I really appreciated your description of your rads experience.  I found mine a bit surreal in a good way too.  It was fall, the days were beautiful and some days I walked to and from my radiation appointments which made me feel healthy and in control. I work in healthcare so it was kind of odd- like going to work, my team and I laughed because I showed people where the gowns are and how to get to the waiting rooms- I just must have the "look" of someone you ask for help in a healthcare setting.  

    Percy I am also really glad you have a friend to bring you- not because you need it per se but because its nice to have someone drive and you don't worry about it. The traffic in the bay area can be brutal and I chose my treatment site specifically because it was only a mile away or so. Keep us posted on how it all is going 

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  • Jan72014
    Jan72014 Member Posts: 7
    edited February 2014

    Hi Percy, 

    You are so right!

    My lovely 33yr old daughter insists that since I have breast cancer I am ABSOLUTELY REQUIRED to be a princess in every possible way and no-one is allowed to question it on pain of execution. You have a right to feel what you feel and a right to expect others to respond appropriately, and if they don't then first to gently but firmly tell them what you want of them and why, ie to train them to treat you right using the request, the broken record repeat method, the assertive statement, the hissy fit, whatever works, and if they are untrainable then to minimise contact. You have a right to ask for ALL the help you need which is often a big shakeup for husbands and sons and other family members, but in the long run, once they get the hang of it, and understand how vital it all is to your wellbeing, they will stop fearing looking like slaves  and start to become knights on white chargers. You have a right to decide what contacts are helpful and which ones are not, and to modify your environment to be healing for you.

    I have a bipolar sister who is always-selfish and  thoughtless and who rang me at 5.45am interupting my first good sleep after diagnosis, and asked really personal questions about the surgery that made me feel hideously embarrassed about how deformed I was going to be post surgery until I told her this conversation was not helping me at all, and to communicate by txt or email in future, but not please to ring me again. I hate it that the relationship is like this, but there is a long history behind it, and my goal is to look after me first and to be as compassionate to her as possible next.

    There is a shadow side of having cancer which is full of fear, rage, grief and shame and loneliness. There are cranky days. And I find permitting myself to be a princess whose needs matter, who has a right to feel bad sometimes and expect comfort not criticism, helps. Being staunch to me and what I feel, and to find what soothes and consoles me. Some people suffer  severe depression or anxiety while going through the cancer journey,  and really need to take the problem to their doctor/surgeon/oncologist because it doesn't need to be this way.

    It is also rude and judgemental of your family members to refuse to listen to you and not to respond to your choices of what you want to talk about. I can be really positive when I am feeling well and rested, but I also sometimes want people to acknowledge that I am suffering from a life threatening disease, and that it could kill me within a few years, and to listen to my experience of what it is like to confront this, not to palm me off with platitudes about how most people sail through the treatment. If I am talking about how blessed I am that there is this wonderful treatment available now then yes, that response fits into the conversation well.You have a right (maybe a duty) to gently but firmly explain that what they are saying
    or doing may be wellmeant but is not what you need, and to tell them
    what you do need and why.You also have a right to simply cut your losses and quietly keep your distance if you prefer. I have become much closer to a number of family members either because they were always spot on with their responses, or alternatively because they upset me and I talked to them about what upset me about their responses, and we talked it through and came to know and understand each other much better, and are much more loving to each other as a result.

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  • percy4
    percy4 Member Posts: 477
    edited February 2014


    Thanks so much, Jan.  Beautifully put!

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  • wyo
    wyo Member Posts: 541
    edited February 2014

    hey percy- good to see you!! how is everything going- hope all is well. 

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  • percy4
    percy4 Member Posts: 477
    edited February 2014

    Hi Dear - All is well.  The first week of rads is over, three to go.  Of course, no SEs expected week one.  I am exercising lightly and stretching a lot, eating VERY well, and drinking lots of water.  Using good topical compounds and visualizing.  As ballet pointed out, no vitamins or herbs or anything, even tumeric (which is an anti-oxidant as well as an anti-inflammatory), though the RO said tumeric is OK.  I'm a stickler.  If anti-oxidants can even possibly deflect from the oxidizing destruction of the DNA of the cancer cells which MAY remain, I'm not taking the chance.  I do not like radiation, but do want it to work.  They're leaving the 4-day boost of extra radiation to the tumor bed up to me.  A hard call, as it is only a 2% overall benefit; the RO defines it as a very small extra benefit.  On the other hand, he says the possible extra damage to the breast is also very small.  Though I want as little poison in me as possible, I'm leaning toward the boost.  In for a penny, in for a pound.  Yes, I would hate it if I had the boost and had possible breast fibrosis down the road which I might not have had without the boost, but I would hate it more if I didn't have the boost and had a recurrence, knowing that extra 2% protection might have been the difference.  Also, let's remember my narrowest margin, "clean" but very close, was one half of one mm.  So will probably do the boost.  Any input about what any of you would do, in my position, about that question? xx

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  • Jelson
    Jelson Member Posts: 1,535
    edited February 2014

    I had the boosts because I had a margin around 1mm at the skin side. then it was over and done. in for a dime, in for a dollar!

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  • percy4
    percy4 Member Posts: 477
    edited February 2014


    Thank you.  I need to know about this.  Have you experienced major fibrosis/shrinkage?

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  • percy4
    percy4 Member Posts: 477
    edited February 2014

    Though I appreciate EVERYONE, it is obviously so valuable for all of us newbies here to listen to what women who are 5-10 years out know.

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  • percy4
    percy4 Member Posts: 477
    edited February 2014

    Goodness.  Don't you all wish (as I do) that we could all meet in person, at least once?  Just the women participating in this particular section, around this particular time?  I was just watching a TV doc about a group of people who went through grammar school together, and still meet (30 of them) once a month.  What do you say; Hawaii?  London (my favorite)?

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  • TB90
    TB90 Member Posts: 992
    edited February 2014

    Percy, good for your to be done your first week!  There is a thread under radiation treatment about 10 years plus and any lingering se's, etc.  You may want to post there asking about changes to breast with or without boosts, etc.   

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  • ballet12
    ballet12 Member Posts: 981
    edited February 2014

    Hi Percy, the boosts make sense in your case.  At Memorial Sloan Kettering, they don't routinely do boosts for DCIS, but I'm not sure about DCIS-MI; however, they do prescribe the boosts for DCIS cases where there are narrow margins.   Again, it makes sense in your situation.  I'd probably do it as well. I hope you continue to do well throughout this process, with minimal to no side effects.

    About getting together, there have been groups of people from these threads who do get together.  There was a New York City group (prior to my time) and there have been others.  I've never been to SF, so would love to go there someday. 

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  • percy4
    percy4 Member Posts: 477
    edited February 2014


    I am beginning to feel like I will have "after the show" letdown.  My daughter is an actress, and she is so involved in the process and upsets during a show, and then after, depression and she doesn't know how to feel.  In a few weeks, they will be letting me go, and then I have to go on with the life I had before (which wasn't so great).  How do I do on after having an acute mind and so much support during this, to just back to life?  A consideration.

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  • percy4
    percy4 Member Posts: 477
    edited February 2014


    Ballet and Beesie, and all - I would love to get together. I know I personally don't have a lot of money to do this, but I think if we all got together, there could be a way.  I love you all so much, and even if it is not a luxurious environment, I would love a weekend with you all.  You all have saved my life, over and over again.  Maybe, in the future. xx

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  • Jelson
    Jelson Member Posts: 1,535
    edited February 2014

    Percy4, I am answering your question above about after-effects of boosts/radiation from my perspective of 4.5 years out.  No fibro - consistency of breast tissue changes that I can feel. I continue to have a not painful seroma which is (very) slowly shrinking and which my bs has offered to drain. It is what it is and I am abiding by the philosophy - don't trouble trouble until trouble troubles you - in this case. With regards to shrinkage? ha! I can't remember which was larger prior to surgery, but whichever - it wasn't that big a difference. Now the side with the surgery is BIGGER. I did have an issue about 2 years out - what the radiologist called radiation recall - (sounded like an LSD flashback (about which I don't know personally)). suddenly red and painful. As suggested by the radiologist,  I took Aleve and it quickly went away.  Have not experienced it again. I have no complaints.

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  • Hortense
    Hortense Member Posts: 982
    edited February 2014

    I also went to Sloan Kettering and I was given a boost to the tumor bed in Oct 2012. I wanted to do everything I could to kill off whatever might remain. I have had two clear mammograms since then - one last week, and no problems after I found out I was supposed to continue using moisturizer on the radiated breast. Mine had gotten to feel hard, almost cardboard-y, sometimes on the surface about 4-5 months afterwards, which worried me, however, apparently that happens a lot and you just need to use a rich moisturizer on it regularly. Since then, I apply it at night before going to bed. It softened right up and I have had no problem since. 

    As for size, my radiated breast is smaller, but it started out smaller and also had tissue removed as part of the lumpectomy. It doesn't bother me or my husband, who doesn't care. He's just glad I am healthy. Remember, most women have one breast smaller than the other, not all are perfect twins.

    I think the most important thing that you can do for yourself is to make yourself think positively. I did and as a result never felt the need to cry or got depressed. Your hospital should offer counseling and help for getting through and past treatment. You might want to look into it, if you are concerned about how you may do afterwards. When treatment ends, you will still have some regular check ups, but your life does go back to normal. Perhaps this might be a good time for you to think about making changes in your life, to do things your always wanted to do. But first, rest. Radiation does make you tired.

    It's important to take good care of yourself, as you have a long, long time ahead of you. (((hugs)))

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  • qutypy
    qutypy Member Posts: 54
    edited February 2014

    I agree, families can drop the ball. My parents never bothered to come see me after surgery, and 3 days post op, my sister said she had an important phone call to make and couldn't come. Ive relied on friends, but then again, a lot of them were disappointing as well. It gave me the opportunity to "weed out" unnecessary relationships and make my life much simpler.

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  • Pokemom1959
    Pokemom1959 Member Posts: 198
    edited February 2014

    The thorn in my side is my sister in law.  She's always been a drama queen and quite frankly, I expect that she would be diagnosed as a histrionic personality if she ever went to get help.  Seems like she always has to be fighting with one family member or another over something. Unless the focus is on her (good or bad), she's not happy.

    So, when I was diagnosed, I made the decision not to tell my work.  It's none of their business, it doesn't affect my job performance and I've made up the 2 days I missed because of surgery.  Every time I've shared my diagnosis with family and friends, I've asked them not to post about it on Facebook because my boss and our HR guy are my Facebook friends.

    Everyone has been wonderful about respecting my wishes.  After my SNB on 2/20, I come home, check my facebook and see that my brother has posted asking for prayers for his sister who is in surgery.  I texted him, reminded him I didn't want anything posted on FB and he apologized profusely and took it down immediately.  

    A few hours later, I notice that my sister in law (his wife) has also posted on FB:  "Please pray for my sis in law.  Cancer in family ...  very conserved (sic)!  No matter what.  God is on our side!!"  and then "She didn't want anyone to know.   Oh well, God is good!!! So she can hate me but God is greater than all of us!!!  Because of this, I thank God that I can get my daughter checked for cancer!!!!!"

    Besides the fact that this is pretty much unintelligible, it seems pretty clear that she is telling the world I have cancer, that she knows I don't want people on Facebook to know but that she's going to post it anyway because God is good and she doesn't care if I hate her because she posted it.  Whaaaaat?

    I immediately text my brother and tell him to have her take it down.  I call my dad sobbing - this truly affected me more than the surgery I'd undergone that day.  It just felt like such an absolute betrayal.  She did take it down but then posted something like "Just want to be done with this whole FB thing!!  It bites!!!  The big one!!!"

    How in the world did she think she had any right to share my personal, medical information with the world when I had specifically asked her not to?  She KNEW it was wrong (even admitted it in her post) and that I didn't want her to do it, but for her own selfish reasons she did it anyway.  And she's glad I went through breast cancer so she can get my niece checked for cancer - gee, you're welcome.  Glad I could help you out in some way.

    It's been almost a week and I haven't gotten an apology, a phone call .. anything.  She apparently feels justified in what she did because she was doing it for me (in spite of my strict instructions not to) by getting strangers from the internet to pray for me.

    I'm just shaking my head.

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  • percy4
    percy4 Member Posts: 477
    edited February 2014

    I am SO sorry. I know just how you feel.  I have a couple of family members who are FB addicts.  One, I haven't told, and the other knows better than to cross me about something this big.  Telling people like your sister-in-law what you would like for yourself is ineffective because they are narcissists, in my opinion.  And not very bright.  Hard for you, in that your brother really can't keep family info from his wife, and you want to be able to share with him.  As people like her don't understand anything complex, I would simply text her directly (so it will have been said, from you to her) that you are very unhappy that she referred to your BC in ANY way publicly, ignore (do not answer and get into a back-and-forth) any answering ridiculous explanations, forget about it, and move on to taking care of yourself.  As I said, you can't pick your family, and even worse, you can't pick who they pick.  You have my sympathy. xx

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  • Hortense
    Hortense Member Posts: 982
    edited April 2014

    pokemem - Unfortunately, your sister-in-law is selfish, stupid and has impulse control issues. There's no cure for stupid, sadly.Sad

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