Did you give your friends/family cancer "rules"?

mdg

Ok, call me strange, but I just had to say some things that have been on my mind to my family as I start to tell them about my diagnosis.  I have had almost 4 weeks to process what is going on and get test results back and define my treatment plan all without telling my family (other than my sister because she is an oncology nurse so I told her right away).  So when I told my mom and brother my news today, there were a few things I added.  (You have to know my personality...I say it like it is and am a bit sarcastic).  Here is my list (LOL!!!!)

1.  I don't have cancer any more - we just have to keep it that way.  (tumor removed and waiting for BLMX)

2.  Remember the "90%" and remind me of that when I waver or don't believe it (my doctor says I have a 90% chance of no recurrence with my treatment plan and situation).

3.  Don't tell me "you are strong".  I hate that.  I am not strong, I am human.  I don't want to go through having cancer.  I am not coping well with it - maybe in front of you, but I have meltdowns, cry daily, can't sleep, can't eat.  No one wants to deal with it.  No one can get through this being "strong" though you may think so or it may look that way on the outside.  It just sucks - period!

4.  Don't tell me any cancer stories.  I don't want to hear how your friend's mom died from breast cancer or how she faught it and is doing fine.  None of that matters as each situation is different.  I don't want to hear ANY cancer stories!

5.  Call me when you want to, but don't take it personal if I don't pick up or call you right back.  Some days I just don't want to see anyone, talk to anyone or explain what is going on.  I am not always up to talking about this or even daily trivial things.  Please respect my feelings on this and don't take it personal.

6.  I will need you to help me and my family.  Please reach out to my husband as he keeps so much of this inside and he will never tell me how scared he really is.  If you call him or talk to him, you don't have to tell me.  What is said can remain between you two and I don't ever have to know.

7.  No telling anyone about my cancer unless I agree to it.  This is MY cancer.  I am not ready to go public with my pathetic story. 

The best part of the story is, when I left my mom's house after telling her all of my news and my "list" I told he I loved her.  She said "I love you too.  Good bye weakling".   I just smiled and laughed.  I wonder where I get my personality from????

So did you give your friends/family a list or am I just odd????  Just curious!

Jenmarie9

Maria,

I love this. You said everything that I just couldn't put into words. I let my husband read your post. I told him "see, she explains it all...right there!" Brought tears to his eyes. Thank you

SeasideMemories

mdg,

I didn't make a list and wished I would have!  You will find that your family, if they are anything like mine will just want to help but they forget what YOU want trumps THEIR desire to help! Including the fact that I didn't want my diagnosis broadcast from the mountain tops!

Your list is perfect!  I especially like the one about your husband.  I KNOW my husband was probably as terrified as I was but he NEVER let on.  He was my rock as I was going through what I needed to and I'm not sure he ever talked to anyone about what HE was going through.  

Your Mom sounds like she "gets it"

Best of luck to you! 

jo1955

mdg - You are not strange, in fact I really like your set of rules. So much so, I wish I had come up with them myself.  They make a lot of sense and describe the way I have felt about this whole process.  I have re read them a couple of times and I feel like I am looking in a mirror and saying the same things.

I did not give my family/friends rules - wish I had. 

momand2kids

Mdg-you have to do what works for you and this sounds like it will.  When I told people (my family-immediate only, no in-laws, no cousins, etc) and colleagues (as few as I  could get away with), I used the same script-- "I have some good news-they found a lump in my breast, they took it out and I have to have some treatment but essentially I am cured (per my oncologist)-- going to be just fine-wanted you to know because I might reach out to you for help at some point with kids, etc".... I really controlled the message.  I asked those who I told not to tell others and for the most part, I think they held to that.  

When I had hard times or was upset, I went to colleagues and friends who had had breast cancer, because I knew they understood.  I rarely went to a family member or colleague....worked for me, but might not work for others.  

Sounds like you have a plan----- glad to hear things are moving along 

joyce1419

not as complete as you, but thank you for confirming what i want to say is not off the wall.

supersally

Great stuff! 

I might add, don't ask me akward questions like what my survival chances are.  When I was dx'd with cervical cancer 2 yrs ago, I was in a comfortable and neutral, if not positive, state of denial.  When I would talk with my sister she had millions of questions and wanted numbers, details on procedures, stats, etc. which made me face that I had CANCER.  I finally just said to her that I didn't know, didn't want to know, and get on the internet or ask your own doc.  I also did not want people to be told.

That said, I'm a different patient this time.  I have more time and more knowledge and having beaten cancer once (so far NED for CC) feel like I can beat this one too.  I'm certainly advocating and participating and researching for my own health far more than I did with my first diagnosis.

barbe1958

I was pretty adament when I said:

1) I am NOT a "survivor"

2) I am NOT a "victim"

3) and I do NOT do "pink"

I think it boiled down to the fact that I didn't want pity. Chocolate. Now chocolate I wanted. I MADE my little borther come visit me in the hospital and told him what chocolate to bring. He did! eheheheheheheh

Lowrider54

Yes, I did and I like yours - kinda similar - I added that I have to adjust to my 'new normal' in my own way and when told it doesn't have to be that way - I had to further explain (I am now stage iv with bone mets to the spine):

- my focus is on today and how to live in the present

- I will have limitations and I need to discover them and find ways to cope with them

- I am forever changed and will never again be the person I was - I am a better person

- I am not brave or strong - I am me, just like I have always been - don't treat me any different

- I have hopes and dreams and I make plans but I have to consider different things - can I sit in a vehicle for 11 hours - sure, I can drive it but what am I going to feel like when I get there

- While I appreciate your offers of help - I have never been one to ask for it unless I really need it - wait until I ask - half the time, I don't know what I need so how can I ask for it

- And rest assured I will be doing everything possible to see that I am around for as long as possible because I am not done with living yet - I am going to LIVE with this - don't read about the statistics - I am not one.

hymil

Barbe, you make me laugh out loud, once again!

rcca

I gave everyone except my kids (young adults) rules. I figured if they wanted to tell someone, maybe they needed to talk to one of their friends.

One of my friends couldn't keep her mouth shut. When she asked me to her annual New Years Eve party I told her I couldn't make it. I didn't want to be in a room full of people asking me questions. Just not how I was going to spend my New Years. One of her friends, who is an acquaintance of mine, asked me a personal question at the grocery store, and my answer was I had now idea what she was talking about.

rcca

momand2kids

Hadley

it was that kind of response that I worked hard to avoid by preempting people with my "I have good news" script.  Even now, when the people who knew ask me how I am , I say "completely cured"..... because that is what my onc told me.....  and I choose to believe her.  

I found the experience of bc to be so common once I had it.... so it was normalized for me- and I managed to normalize it for everyone around me.  but in the beginning, I could not have handled those people who speak before they think.... just could not do it......

but now, if it comes up, I try to use the conversation to educate a little, especially for my women friends and colleagues.  I have learned so much, so if it makes sense, I do share some of what I have learned.  But that is now-- at the beginning, no way! 

DucorpsToo

In my case, I only went through lumpectomy followed by radiation (and of course the standard Tamoxifen...just started up on 11/2010). As far as "rules", I didn't have any. Other than my husband and the medical professionals involved, I told no one until my treatments (surgery,rads) were over. Besides that, I talked about it in "past tense" when I did divulge that information. Like many of you, I really wouldn't be able to nor wish to deal with the questioning, the foot-in-mouth disease all due to the stigma  of a cancer diagnosis.So at this point, the only folks that I told after the major things were in "past tense" were my mom, a friend of mine who also had BC, and a former work colleague that I have known for about 15 years-he's been battling lymphoma for the past 3 years...

Thus far, I don't regret my decision to keep relatively tight-lipped...no harm...no foul...

citykitty

Mdg, well said.  I had to discover it all the hard way.  I didn't know people would say "you are strong," or "you'll be fine," when they had no way of knowing if that was actually true.  But I knew their hearts were in the right place, so I took it all with a large grain of salt.

I recently came across a book called, "Help Me Live: 20 Things People with Cancer Want You to Know."  I think you just wrote half of that book in your post!  ; )  Just proof that not only are you not odd, you are right on target! 

goatlisa

Mdg, 

You are my hero. I have a blog too and am now inspired to write my own list but don't want to be accused of copyright violation. Haha

Hot diggity, you rock!!!

Lisa 

mdg

Blogging is giving me sanity these days.......I don't know if anyone reads it or anyone cares, but I feel better getting it all out!  I also have one more rule I didn't post.  I am only letting everyone cry with me ONCE.  I told my friend the other day "you better make it good because we are not doing this again!".   She said "Had I known I would have waited til right before my period...that would have made it great!". 

Anonymous

Funny how your rules and mine were/are so similar.

I am about 2 months from my dx and still haven't told many people in my life (the rule about letting this cat out of the bag) and asked people (my MIL!) to stop with the "Be strong, you can do this, you have to fight" advice.

I swear she said it about 100 times the first 2 times I saw her after my dx. Every time she said it - as if I wouldn't fight when I have two young kids!! - I got more and more angry. Finally, on the 100th repeat, I blurted out: "Stop saying that, its pissing me off"

She has not said it again.

charlottesmama

LOL! I said the same thing about pink." I'm more punk than pink." "I'm not a pink ribbon kinda grrr. I'm more combat boots and black leather jacket."

myrightbreast.wordpress.com 

Tundra

this is great. yes, I've definitely been making rules, kind of as I go along in response to the things people say to me. mine are very simliar to yours.

some other favorites that have come out of my mouth... "just because I have cancer doesn't mean I'm suddenly enlightened". (e.g. any more wise about dealing with the same old problems)

 I also find that I sometimes need to askfor little vacations from it -- e.g. a day, or even just a conversation when we talk about something other than my treatment, etc.

 nice work! I shared your list with my family so they could see that it's not just me who's needing to be firm and clear about this kind of thing. ;-)

Tundra

mfrenchcaz... LOVE the quotes!

I relate!

and love your blog too!

toni30

Here were my rules:

1.  You may not tell anyone about this.  (I told only a select group of people while I was still in treatment).

2.  You may not offer me advice unless I ask for it.

3.  I don't talk cancer at night.

amart1953

MDG, wow you really put into words how alot of us feel or has felt.  how i wish everyone i know would beable to read your posting.  it is wonderful.  it's exactly what i was going through and at times still going through it.  i was dx in 2008, right breast lumpectomy, then revision, six months later, cancer in both breast, double masectomy and four sugeries following, then a roll over car accident two months after the last sugery.  there is no one in this world (meaning my people) who could for the life of me, just try to understand why i didn't or don't feel like talking to them on the phone.  yes i am hiding and i don't care.  it has gotten alot better, but when i have pain under my right implant when taking a deep breath, i get like i don't want to talk.  i guess this ugly dx just lingers on for a very long time.  i never feel like i have my breast anymore, these things are fake, still numb, and just yucky.  may god bless you and thank you for putting into words what alot of us have tried to say!!!!!!!!!!!!!!!!!!!!  feel good  :-)

mdg

Glad I am not crazy.  I should add one more rule specifically for my mom:

Don't call and say "I haven't heard from you so I am getting nervous" in that negative mom tone. 

I finally said to her today "Mom, I am sorry but I am not trying to disreguard your feelings but I am dealing with a lot and don't feel like talking all the time."  UGH!  I know she is worried and cares but it is exhausting going through all of this multiple times a day with multiple people.....................

 Another Rule to add:  Please stop asking me "what can I do"?  If you want to do something, just do it.  Quite honestly I wish people would just send me encouraging notes, letters or emails - or even a good movie to watch or a book that is uplifting.  I don't want to tell people to do this because it's wierd, but I just wish people could just do things if they want to help instead of asking me that question over and over and over........I wish someone would volunteer to come sit with me after surgery so my poor DH doesn't have to take more time off work, but since everyone works no one is willing to do that.  Now that would help me. 

OK, I am done venting........frustrating week!  My surgery date is getting closer and my inner "cancer biotch" is coming out (LOL!  I hope I didn't offend anyone.....but I am feeling a bit snarky right now). 

Anonymous

MDG: you've hit it right on --every rule you put out there sounds just like me!!!  Thank you so much!  I have one more rule to add:  Don't EVER and I mean EVER tell me to be positive!!  What the heck is so positive about this cancer business when we should be saving many many more lives than we do?  I had a friend tell another acquaintance about me even after telling her not to share my story with anyone.  If we only have control over this much, they need to respect that.  PS:  I don't do pink either.   

mdg

I love the rules....I can't help it.  People have no clue what they are saying and how hurtful it can be to someone going through this.  I am glad so many of you have validated my feelings and that I know I am not a freak!  The other rule I want to add now that I am in chemo is:

 Don't say "it's just hair - it will grow back" or "you have great hair for a wig..there's some really good wigs that look like your hair".  STFU!  The funny thing is I am doing cold caps to keep my hair and people are basically telling me it won't work so don't get your hopes up...even the nurses and people at the cancer center.  Could they be any more negative???!??!  Really?!?!?!  I did treatment #2 of 4 yesterday and still have a full head of hair. How about them apples?????  OK - I feel better now.  Thanks for listening.

Beaglesgirl

This is just the thread I needed to stumble across ThankYou!! My rules have unfolded a bit differently because mostly I don't want my kids hurt anymore we went through losing my late husband and have come full circle after the pain and devastation of that (they are 18,16&7) I remarried and we are happy....



So I said this is not a secret but I would like some privacy no more bring the whole school band into my room after school without notice.



I am not braver than you! We all run and fast when a giant tiger is after us so please don't buy into that line of bravery.



I will designate one person to help me to the really crappy stuff like bathing and drain emptying etc.. I will be losing much dignity in this process so I don't want those images circulating around everyones minds that I love.



That's what I started with...



Laura

wrsmith2x

With everything that has happened to you, you can either feel sorry for yourself or treat what has happened as a gift. Everything is either an opportunity to grow or an obstacle to keep you from growing. You get to choose. - Dr. Wayne Dyer

barbe1958

I certainly don't consider cancer a gift. It is a situation that had to be dealt with. I don't feel sorry for myself either. And not everything is meant to be an opportunity to grow. Maybe it's just something you have to try a little harder with, stretch out of your comfort zone, what ever you want to call it, just get it done. Like taxes. No one wants to do them, but they're not a gift! And they're certainly not an opportunity to grow! I usually like what Dr. Dyer says. This quote seems quite shallow really.

It's not what happens to you in life that forms you. It's how you react that makes or breaks you.

thegoodfight

This is a great thread.  How did I miss it when it started?  I also got tired of people telling me how strong I was and how they admired me, so I especially liked the analogy that we would all run fast if a giant tiger were chasing us.  I was not special, I just did what I had to do.................what was the alternative?

I agree that cancer is not a gift, but I am one who believes that everything that happens is supposed to happen and sometimes we can figure out at least part of the reason.  For me, it added exercise to my life big time trying to counter the effects of arimidex on my bones.  I am lucky to be retired and live in a community with a wonderful gym and an instructor who comes in to do classes.  I do pilates twice a week, personal strength training twice a week and water aerobics once.  This complements my tennis playing a few times a week which I was already doing.  I am physically stronger than ever, and truth be told, I would never be doing this exercise program if it wasn't for my bc.  So now I feel I will live longer and stronger, stand straighter, fall less and not break bones as I continue to grow older.  So I guess that is a gift in a way.....................Caren

kshav6

I love your post.  I was just diagnosed and have been trolling the board looking for I don't know what.  When I found this I had to read it to my husband and when I first read #3 to myself I laughed but when I read it to my husband I cried. 

The only one I don't agree with is #7. This is not MY cancer.  It is something that grew in my body that I do not want and am very happy to be rid of it.  I don't mind that my family tell whomever they want as the more people that talk about it the more awareness there is for others.  I already have a friend that is setting up her mammogram because she is a couple of years behind in getting one.  You never know who your story may help

Thanks for posting your list, it was a geat one!  

Kelly

lrr4993

I did not have a list, but I did ask that they not tell others.  I did not - and still don't - want the attention.  My father told everyone.  I have never been so mad.  I am still mad.