If you can't say something nice...

percy4

I have to vent.  As many of you know, I had a lumpectomy and am starting rads next week.  Along the way, I've had wrong, amended pathology reports, incidental (I hope) liver findings, leading to several more imagings, etc.  It's been trying.  I know I am fortunate to have a great prognosis, very.  I also know it was not fortunate to get this at all, and it will be a mental adjustment to put it behind me after treatment, knowing in the back of my mind it can always recur.  This is the problem now.  While surprised and supportive at first, a couple of my family members have become critical, to say the least.  I am extrememly self-sufficient.  I did talk about my feelings (invited) several times between diagnosis and path results.  I have not burdened any one friend or family memeber with too much of this, have dealt with it largely alone and here.  I've asked for nothing but a few rides.  It seems that having DCIS, even with a micro-invasion, just doesn't cut it for ongoing support, family-wise.  Not serious enough.  The fact that it can recur, and the idea has to be lived with always, etc., doesn't seem to matter.  My father's wife had a lump, early Sage 1, lumpectomy and rads 10 years ago.  She is very submissive, so went through it all without a question or seeming opinion.  When I tell my dad I'm concerned about the side-effects of rads, he says "Margaret never was.  Some people just don't worry so much and ask so many questions, they go along.  But I'm not judging".  Of course he is, as he says that all the time.  Last night, my sister, a true cancerphobe who I have talked down many times and escorted to many cancer checks, all negative, over her lifetime, said, when I told her I knew I had to do rads but was unhappy about the neccesity, that she has known other people with more important cancers who weren't so negative.  I am not negative; I am thorough.  When I speak about this to my family (which is infrequently the last few weeks)  I express gratitude and I also express displeasure at certain aspects of this.  I think my ability to articulate descriptively while retaining composure bothers my sister.  She'd like it better if I just broke down.  She even said that I possibly got this cancer from being negative.  I could wring her neck, seriously.  Of course, my friends do not find me negative in the least, just kind of in the middle and rational about both sides of things.  You can't pick your family.  I do not need anything but supportive, good energy right now, and as is said, if they can't say something nice, they should just say nothing at all.  There.  I've vented.  Thanks, all. xx

mrenee68

Vent away! Sometimes family can be so insensitive. I always tell my kids you can think it but don't speak it. I think it is so easy for people to be critical about how others handle situations. Hang in there, this to shall pass. 

geekyknitter

Family aren't always the best source of support.  Mine certainly aren't.  If it were me, I'd concentrate on spending time with friends who are more supportive and provide you the good energy you need to gear up for all this.

Big hugs and sorry you're having to deal with this!

percy4

Thanks so much.  So; it's not just me, experiencing this.  I have to say, my sister, especially, bothers me, about the "negative" thing.  This is a woman who was convinced, for no reason, that she had lymphoma.  For two years; MANY hysterical phone calls, and me, the voice of reason for however long she needed it.  She drove several docs nuts, insisting they test her for something she obviously did not have.  She had me come with her, to ask her list of questions, because I'm "so good at it".  I have gone with her to a colonoscopy she had because of minor rectal bleeding, which everyone told her was clearly hemmorhoids from having a baby the year before, during which she held pics of her child and cried and said she was sure it was cancer and she didn't want to leave her child, and was she going to die (I told her "Not today.")? I have literally held her hand while she had an unnecessay spinal tap (that was fun, watching the spinal fluid rise into the oversized syringe), reassuring her all the time.  I have consoled her when she was boiling her breast milk (which turned out to leave the milk without nutrients, so her baby was getting malnutrition) because she'd not been tested for HIV, though she was not in any risk group, etc., etc.  I never called her negative (or NUTS, as she was being).  So.  I resent this, coming from her, calling me negative because I simply said I am displeased about the effects of rads on the body.  Family.  Thank goodness I have this forum to come to.  P.S.  My son has been wonderful.

percy4

Sorry to go on about my Sis.  Thought I'd give you all a grin. xx

TB90

Percy:  Do not apologize.  That is what these forums are for.  Better here than elsewhere.  I also have a peeve about my sister that I have not expressed.  I waited until I rec'd the dx of cancer before letting my siblings know as I did not want to worry them unnecessarily.  I emailed them together with some humour to make it easier to deal with.  I did not hear from my sister for five days!  She gave me a pep talk about doing what was necessary and getting on with it.  She called the night before my surgery and then I gave her a report the day following my surgery.  That was 8 or 9 weeks ago and she has not contacted me since.  She has no idea what my actual diagnosis is.  My wonderful younger brother has been in constant contact with me and his partner has also been fabulous.  I am brokenhearted about my sister's absence.  I would have be on a plane to be with her.  But I am trying to focus on how fabulous my brother has been and I actually had a dream the other night that he was my sister (with a moustache!)  Lol  The best surprise for me has been how important you women have been in my journey.  And Percy, you are one of them. 

As others have said, surround yourself with the best persons to support you right now even if they are "us".  We are there for you xxxxxxx  

I want to add that I emailed them because I could not speak without crying at that time.  I found it particularly difficult to tell my siblings. 

percy4

Oh, my Dear, I am SO sorry.  Family's reactions are strange, sometimes; not what we would expect at all, and certainly not what we would do.  People here say that sometimes others just can't deal with it, so have their odd responses.  So true. I certainly think my Dad downplaying it has to do with his frustration about not being able to do anything.  So common with some men.; men of a certain generation just don't get that talking IS an activity.  Your husband and son, however, sound great!  I also think sisters, who, but for the grace of God, feel they could be us, might be the most prone to unusual reactions.  I'd be interested to know the experiences of other women here, with their sisters.

percy4

For instance.  When my sister compares me unfavorably to more "stoic" cancer patients, I could point out to her all the people I know who are not NUTS.  But, I don't.  I really can be nice, don't you think?

TB90

Perhaps my breast cancer is so threatening to my sister as she may worry that now she is at risk.  She may just want to forget about the whole thing.  But she should be able to still be there for me, as we are sisters.  I think that it is so very difficult for those of us who can deal with life and support others through anything, to understand how those closest to us cannot be there for us as we need them to be. 

Beesie

I think we probably all have our family stories.    In my case, one family member, in an attempt to be empathetic about the fact that I'd just had a MX, mentioned a scar on her breast that she got as a result of a pimple that didn't heal properly. 

That's why we come here to vent.

percy4

Oh, Beesie, you just made me laugh out loud!  Thank you all.  Love - P.

cinnamonsmiles

I look at it as cancer is cancer. It sucks, it is not fun, the side effects sucks, treatments suck, surgeries suck. I think we have earned the right to handle it as we do. Everyone is different. And yes, I think we earned the right to be negative and complain about cancer crap at times.

I am sorry that your family is so insensitive. You are way too nice. I would have some matter-of-fact comments for them. Who the heck in the world would think rads is a piece of cake? A walk in the park? Like having a mole or wart removed? 

You sound like you are handling things just fine, but have some pretty insensitive family members. I hope you find your way to figure out how to deal with them to make your new journey with cancer easier.

percy4

Thank you; thank you.  This forum has saved my sanity.  Unlike the friends we choose, family is just the people we got.  I love them, but would not necessarily choose them, otherwise.  Yes; radiation is a necessary assault on the body, and there is nothing wrong with me being unsettled about having it.   People do not like ambiguity.  My dear friend, Ted, who died 4 years ago, always said this. He said "It is the intelligent mind that can live with ambiguity".  I am ambiguous.  I want rads to perhaps save my life; I am unhappy about rads because it is a poison.  Is that so hard to understand?  Everything is not black and white. If I did not have this forum, I would not be validated in this, and, as I live alone, that validation is invaluable to me.  Love, love , love!  We have a lot of love, here.

MelissaDallas

Just saying...you might count your blessing. I sometimes wished my mom was LESS solicitous when I was in the hospital. Bless her heart, she about drove me insane. I told my sister I was half expecting her to snatch the toilet paper out of my hand and attempt to wipe my butt for me

percy4

Well, yes.  There is that. xx

percy4

So. I am doing rads next week.  I am unhappy about the possible side effects.  I have consulted a nearby acupuncture and Chinese medicine clinic here, one that is highly recommended for many years. I have let my RO know about it.  He respects the work they do, to the point of saying he would defer to them about supplement recommendations, etc.  I think that's very cool.  I have been advised about topical compounds, a supplement for staving off, a bit, possible radiation fibrosis, and diet and certain exercise advice to mitigate the possible side effects.  So, I will be doing all I can to get through rads with the best possible results.  I am happy that I have done my research.  I feel we owe ourselves nothing less.  Even if my silly sister thinks I'm being a freak (what a projection). xx

ponyo

Percy4,

Good for you to pursue complementary/non-Western medicine. I did something similar and continue to see an acupuncturist twice weekly and take my assorted herbs and supplements. My surgeon was great when I told her that I was on herbs and supplements and was able to give me solid guidance about what was not compatible (as opposed to the standard--stop taking everything!)

Good luck with the rads.

~P

ballet12

Hi Percy, about the acupuncture and possible Chinese medicine, I'd hold off on taking any herbs or alternative meds during the actual treatment, unless the RO OK's it.  They explicitly state this in the materials I got from Memorial Sloan Kettering.  Herbs and other alternative medicines might interfere with the intent of the radiation.  I know that radiation is daunting, but we do want it to do what we intend it to do.  As soon as the radiation is over (and beforehand), go for the supplements to your heart's content. You will definitely need them then, because that's when the fatigue is often felt (especially with that three week intense protocol).  Topical compounds, diet and exercise are great, in fact, exercise has been found to mitigate the effects of radiation.  I exercised throughout, although on the last day of that three week series, I showed up for an exercise class right after radiation (I was doing that throughout the time), and I was so sleepy that I felt like I needed to do the class with my eyes closed.

About the family members, as Beesie said, yes, we all have stories.  I recall that we were having a family gathering a couple of months after I completed radiation. It was during a specific religious holiday, and my cousin emailed me about bringing certain things.  When I didn't respond to the email right away, she shot another email back to me asking me if I couldn't do what she requested because I was too sick.  Yikes.

Percy, I'm sorry that your sister is being so insensitive.

Best of luck with the rads.  We're with ya 100 percent.

percy4

Thanks, love.  Yes.  I asked my RO about the supplements.  While he said that the specific clinic does great work that he repects, I'd asked him if a suppplement could contain radiation effects, could it also protect the cancer?  He said, yes, though there is no clear evidence to support that it would mitigate radiation effects, if it did , it could possibly also protect the cancer.  Because of this possibility, I will only be taking the supplement after.  I have no desire to protect the cancer cells.  I can only do this once, so no desire to have rads less effective.  I will only start the possible supplement help just AFTER the radiation treatment, though this could, in theory, make the protection of the healthy cells less effective.  As I say, I only have one chance for the rads (which I don't like) to be effective.

percy4

Even though it is a chose call.  My RO respects this clinic's advice so much, he literally said he would defer to their advice.  I will not take the chance of any diminishing of radiation help.  I can only do this once.  Hard for me, to know that taking it during might make the difference in side effects.  Still.  Rads only once, so I will have to take any benefits from the supplements just after, even though the benefit might be diminished.  I'm not stupid.

wyo

HI Percy and all- 

Ahhh family- you can't live with them and you can't live without them. They don't have to be polite because "its family" LOL

Percy- I am hoping you will be just fine with Rads- my biggest issue about rads was reading and thinking about all the things that could happen- and didn't.... That is a lot of stress and anxiety I could have avoided but I kept wondering if my skin would hold up, if my heart would be in the field, if my lung would have damage on & on.  In hindsight- any or all of those things could have happened and I could have stopped radiation treatment at any moment its not a ride you get on and can't get right off.  I knew that intellectually but it did not stop the worry.  Putting it behind you is amazingly easy when you are not bare-chested on a Linear-accelerator table each day.

As for my family- I have (4) sister-in-laws my husband is the only boy- when this happened we did not tell any of them.  My kids know, my mom knows and of course blabbed to my brother (don't I sound 12yrs old)  His question was so--------how are you doing with that cancer-thing

percy4

And, back to the subject.  If I talked to my family about these considerations (except my son, who was always the black sheep, but who has turned out beautifully, as I always knew he would), apparently I would be seen to be "negative".  Makes me want to go away and live somewhere else, which I want to do, anyway.  England; my spirtual home.  They get my humour.

percy4

wyo- I am so glad that everyone here gets that I had cancer.  Sounds strange, but it seems when your cancer is small, and you are going to live, you do not get the same support you would have otherwise.  Yes.  I am extremely grateful I presented wtth a low grade cancer.  I went to the oncologist's office, and there I saw ladies, younger than me, with the no hair and everything.  I know I'm lucky.  I also know I've had breast cancer, and my concerns about the future are just as great.  My concern about these treatments, and radiation, are just as great.  This is what I love about our forum.  We all get that we have had cancer.  We have all the same concerns that anyone with cancer has.  We just get dismissed because our cancer has a probable good outcome.  And that does comfort me, but it does not take away from the fact that I am now scared.  I will get over it, but, right now, I am scared.

Hortense

You sound so much like me. I never cried or felt the need to do so. I did my best to learn as much as I could as I went through treatment and tried not to alarm my family. My husband has been extraordinary and my grown kids supportive. Then, there is my cousin and my sister. Sigh.  

My sister was sympathetic to me, then I started hearing reports that she was telling people in her town, which is in another state, that SHE had cancer and was going through treatment - which she didn't and wasn't. Clearly she was looking for attention. So sad.

My cousin, who has never been the brightest light in the family chandelier, told me several times quite seriously and in a slightly annoyed way, " I don't know why it was necessary for you to go through surgery, chemo and radiation if your lump was so small", as if I had chosen to have each of those treatments. I finally got annoyed back and told her "because it was doing its best to try to kill me". 

That night I was still grumping about her to myself when I had the great luck to across a hilarious thread on here called "OMG! They finally found the cure for stupid!". It was filled with stories about people as stupid as my cousin.

percy4

It may sound awful, in light of what other women are going through, but I feel this.  I don't know whether to make a 5-year plan, or a 30-year plan, or what.  I know you will say we can never make a plan, but I am a planner, and that does not work for me.  Though I know it's true.  We can never make a plan. It's just now more quantified, for me.

percy4

Oh, my goodness; the disrespect. I would never have imagined this in the circumstance of others.  But, seriously, from our loved ones.  I am appalled.  I thought it was just me.  I am going to live.  I had a very small cancer; not life-threatening, so, at the  possible chance of sounding vain, I hope rads doesn't shrink my breast terribly.  I also hope it doesn't come back.  I am afraid.  I will get over being afraid.  I am disappointed, for every one of us, about the people who are not decent enough to be nice.

Hortense

Radiation is easy and doesn't hurt. Just be sure to protect your clothes from the thick cremes and oils you will have to use to keep your radiated area moisturized. As for planning, I am planning on living a good long life, but I am realistic enough to know that might not happen. I could get cancer back, I could get hit by a bus. Someone on this website once wrote, "Nobody promised you tomorrow" and I rather liked that. 

I am doing my best to enjoy today and I am planning on making my tomorrows more comfortable by reducing the stress in my life. I've stepped away from being everyone's helper; I am selling an investment property so I will not have to worry about and manage it anymore and will be adding on to my own house to make it more comfortable for my husband and me; and I got him to retire. And, I just bought myself a gorgeous handbag at Bergdorf's. It's time to enjoy myself. How's THAT for selfish? 

flagirl

percy4

I am right there with you.  I am lucky tho because my family is not in my near vicinity and I choose what I want to disclose for my own sanity.  I was one of the lucky ones and was diagnosed with early stage breast cancer IDC stage1A no lymph involvement and just had lumpectomy 11 o'clock left breast on Feb 4th.  Preliminary path says clear margins and clean lymph nodes (3 removed). I am grateful for the outcome but know that it can come back at some point.  I am having the Oncotype test done which will provide rate of return chances. I am not getting the chemo (thank God), but probably be doing radiation too. If you want to chat about radiation therapy SE's I am here.  I don't know when or how much rads yet going to see surgeon next week.  Good luck and it's about you, not your siblings who want to compete and take away the focus on you.

percy4

Thanks so much.  While you don't choose your family, you do choose your friends, and mine have been great.  My one girlfriend who will be driving me to rads every Monday, just asked a sweet question.  Then we both laughed at how silly it was, because she hadn't thought through what she was saying.  She asked, about when we got to the rads center, "Will I be able to go in with you"?  I said "No, dear, even the people who work there leave the room".  That was funny!

TB90

Oh what our good friends are prepared to do for us

ballet12

Hi Percy, just read your post.  That's beautiful.  You might not remember, but in the beginning of this, you reported that you felt so alone in this.  It sounds like you have at least one really amazing friend.  I don't even think I would have someone who could drop everything to take me to treatment, although my husband came for the surgery appointments.  I know this is going to sound crazy, but I had the radiation in NYC, and it was a really beautiful experience.  I neither live nor work in Manhattan, but I found the commute exhilarating.  Not the subway ride, but the walk to and from the subway to the hospital.  I took different walking routes each day, exploring different neighborhoods.  Then I stopped for a coffee at a shop across from the hospital.  It was January and early February.  The air was brisk.  Luckily we didn't have lots of snow/ice storms like we've had recently.  The staff at the hospital were extraordinarily kind and attentive, from the attending (the RO), to the residents, nurses and techs.  The patients sometimes got to know each other, because we kept to a regular appointment time each day.  Letty Cottin Pogrebin recently wrote a book about how to talk to a friend who's sick, based, in part, on her experience of interviewing her fellow patients in that very same waiting room (she had IDC and needed radiation).  I went to work later in the day most days.  That was the stressful part, but the radiation experience was really special (crazy, no?).  I know you'll probably be going to the appointments by car (with your friend), but I hope your experience is equally nice.  Yes, there may be side effects, but there is the potential for a kind of bonding with the fellow patients, especially if you see the same ones day after day.  And then, before you know it, it'll be over.