it's been quite a year

Orangemat this is a great forum and thank you for this and all of the others that have joined it. I seem to have been in a daze since this journey started, able to be buoyant and stoic to the outside world and a mess within my own world. Not knowing how to explain how I really feel, BC has changed me and I know that when I discuss my feeling my OH is supportive but it raises fears for them so I have now become silent. This forum is brilliant, my support where I can turn up just as me. I know I will turn a corner and my fears will dissappear and my new me will become my normal, but it is early days and if it takes two years I have some time to go.

Suzy - same here. I always out on a brave face and just told everyone that I'm just doing what I have to do. End of story. No sob story here, at least not outright. Everyone says "oh, you're so strong to make that decision. I don't know if I could make that choice". Oh, yeah you could, and would have to. I didn't ask to have to make this decision but what was I going to do? Cry about it to everyone? No, put on the brave face and move forward. Maybe that's why it hits me so hard, because I'm always trying to keep the brave face to the outside and sometimes it just hurts so bad inside.

Hello everyone. I am usually pretty positive about things and push through what I need to get done but today just took the wind out of me. I have been dealing with lingering issues of frozen shoulder and lymphedema and an eye condition called episcleritis and have been waiting for months for a rheumatology appt to see what is causing all my inflammation. It was supposed to be next week. They called today to say there was a scheduling error and she was double booked so I can't get in till the end of July. I am so angry about this. I have had my sights set on the 19th as the date I will figure out what is going on and I would have the summer to get better before school starts again. Now I won't even be seen till the end of July and then we will probay do tests and nothing will be changed when I go back to school. I am stuck once again and there is nothing I can do to change it. It has revealed some anger at having no control over my health that I had not realized was there. I am looking into another hospital to see if I can get in sooner. Ugh!!!

I've put on a brave face my entire life.  When I was diagnosed, I thought, hell with that brave face!  So I thought I let it all out through this LONG journey.  People are still telling me I am so positive.  Well, since Chemo is over, I am more positive. During surgery and Chemo, I was just plain mean because of steroids!  Now I am in Rads. 

There are so many emotions to process during this journey, it is hard to fit them all in.  I felt things I never felt before in my life.  And I do believe someway, somehow, if those emotions aren't dealt with as we go along, they will force us to do so at some future point.

How do we figure it all out???

Thanks Kate. That is exactly how I feel. This dr is at a local hospital and only works there one day a week. She is at a larger hospital the rest of the week that is in another state. She does not have a PA. I put a call into my BS at Mass General and am trying to be seen up there. I don't want to waste the time that I have off waiting for the first appt. Keeping my fingers crossed...

Love the thread girls. I still think about BC all the time. I have my exchange /reduction/lift surgery along with biopsy of lump in good breast on Tuesday. I had to tell a coworker that I couldn't go somewhere last week because I had PT. I couldn't believe it but I started crying. I honestly didn't even want to say it because I feel like this sick old person that always has doctor appointments. I, too, feel like people must be tired of hearing my issues. The truth is that I actually don't talk about it much except to a few chosen family members, but I think because I'm thinking about it all the time, I feel like it is out there. I think the mental life of a breast cancer patient is totally separate from our social life. If people only knew that I am actually a totally changed person on the inside and the damage done to the psyche.

In regards to radiation.... That was extremely difficult and a very hard and emotional time. I felt such a personal accomplishment when I finished that and I felt like I had climbed that mountain pretty alone.

Today was the first time I saw my sister since this whole thing happened. Had my MX in January and just had my exchange on the 6th. We were driving and I just started talking - about the dx, surgeries, doctors, etc. and she didn't even care or ask any questions. She just seemed bored. And I haven't even had these conversations with her face to face before. I feel like to everyone this is old news. But it's not really. Since when in 8 months old news???

Lauren....what's the deal with sisters?  Mine lives in another city and she never once called to check on me through this whole thing.  I called her to let her know about my biopsies and results.   I called to let her know that my BRAC tests were negative.  My husband called to let her know I was through surgery.  I called to let her know my nodes were clear.  That was the last time I talked with her until we saw each other at a family function 5 mos later.  I really did not expect anything different from her, but I guess I was hoping something like CANCER would jar her into acting like a sister for heaven's sake!  Luckily I have wonderful friends who are like real sisters to me and who I love dearly.  Sometimes the very best family are the ones we choose.  

Lauren, sometimes I think that the cancer thing is such a real fear for some, that they cannot even get close enough to it to be close to someone affected by it.  Very sad.  

I would have thought that my sister would have been on the first flight after my MX in January. My cousin flew back east from Arizona.... S when I was telling my cousin what was going on with my sister and what I expected (there was my first mistake - having expectations of people) she said maybe it was a big sister thing, how we felt. We're both the older sister and our younger sisters are kind of different in that more out of touch sort of way. Maybe... But we've unfortunately each been hurt by our sister or best friend, which I know can be as hurtful.



Scottiee - rash thing? Really?



1openheart - I agree 100% on the friend thing. My friends rallied around after my MX and brought dinner, magazines, took my kids for playmates. I would have been lucky if my sister called. She got updates from my mom...

I have to say my sister in laws were all wonderful.  My husband's youngest sis drove up to be with him during my surgery and some of our friends showed up to sit with him too.  That was helpful to me knowing that he had company during those hours of waiting.

Hi everyone,

Yeah, I think the whole thing just makes people uncomfortable.  And after they've done one or two things, say around the first lumpectomy, they figure they've done their part. I don't talk about my cancer, medication issues or upcoming surgery with anyone.  Occasionally someone will ask the date for my upcoming surgery and what it is for. Even if they ask, it's hard to answer.  I just say " Oh, I'm having my boobs redone, from the cancer, you know." I mean, what do you say, it's all so personal.  Some people are just gone from my life now.  I know I have isolated myself, too much has happened; the connections that remain are strained at best.  I do feel wiser, more authentic.  I do what I want to do, although most of that is responsibility/house/kids/job.  I am certainly much more independent, resilient and stolid, than I used to be.  Not much fun tho '.  Not anymore. MX is one yr. on June 30th.  Like to get that' life can be joyful thing' going again someday.

I have to talk about things to process them too.  That has been difficult.  I think most folks got tired of hearing of it all.  When my BF and I broke up, most of the couples we did things with were friends through the guys.  The men were the core group and the women changed through the years. As we broke up, I think the women got squeamish bcuz they knew they could be me and suddenly without a social life.  It was a nasty break up and people were uncomfortable with that.  AND people were really uncomfortabe with the way he handled my cancer, which was badly. So they avoided us; then he got custody of the friends. They hang out with he and his new gf now.  Sort of.  He actually moved out of the county I think becuz they may have ostracized him;  I really don't know. My sister and Mom are surface and fairly distant-ish. Their support is unpredictable.  We don't talk about heart stuff anymore. I have work colleagues and friends who are Mom's of my son's friends.  I have a couple friends I do things with socially.  I have a couple of old BFs who have been kind on FB.  And ......ta da.....I have BCO.  That's my support.  I do have a counselor at the CA ctr too, altho' I wonder if I am out of line seeing her; I think she is supposed to be primarily assisting with very, very ill people.

Orangemat - I think people are afraid it could happen to them. That was true for the break up, the cancer, the mastectomy AND his response to the whole thing.  I think it freaked some people out. 

I have some work people reaching out and I plan to contact them this summer   I am feeling the need for some new friends.  I have heard that this is not unusual as BC does change you.  I had a true BF.  I don't think she had a clue of what I went through or perhaps didn't have the stomach for it.  We had a disagreement, in fact, due to my changing my opinions and things.  We don't speak now, sadly.  But that happens. I think........

But to get back to the original post....if I look over the year, I am so, so much stronger, tougher than I was then. Much more self-reliant.  And that has been very good for me.  As I've heard it said:  I've had breast cancer; you can't scare me!

Although its horrible to have to think this way, it is comforting to know so many of us feel the same way. It is so easy to feel isolated, feel like you can't lean on those around us for emotional support past anything physically happening to us. People by and large, apart from a few notable exceptions, have rallied around when I was first diagnosed six months ago and when I have had surgeries, although even that has dropped off after the third one. But it is the ongoing and fairly constant emotional upheaval that I really need support for and that is much harder to come by.



Having BC has changed everything about my world but I'm the only one who sees it.

Mybee333, it is like my inside world and my outside world don't mesh together anymore. There is the outer layer that everyone else sees - I'm looking wonderful so I'm told, carrying on, can do, must do attitude; then there is the skin layer that is so irrevocably altered, changed and changing beyond all my recognition, and not over yet. Doesn't look like, feel like me, red, raw, cut, numb, bruised, swollen and hurting. Each phase seems like an assault not only on my body but on all my senses.



I can show people the scars, the wounds, the bruises and they go oh that must hurt and they are right, but what they don't see and I can't show them, is how much deeper the hurt goes. Inside I feel like I have been rocked to the core. All the practical things I can do to recover don't begin to reach the place where my sadness lies. I see life, people, relationships, the future, differently.



I'm getting married in less than 3 weeks to a man who has been my friend for 28 years, we have 6 wonderful, full on children between us and a great life to look forward to. But he is not getting the woman he used to know and I only hope we can both adapt to who I am now.

Suzy - what you said is exactly how I feel. At least we all have each other here to share our ups and downs with. Stuff no one else could ever, or would ever, want to understand. Congrats on your upcoming wedding!



I've started to laugh at myself a little more in front of other people. No one wants to hear how much I'm hurting inside, so I have to laugh to wash it away. Last night my husbands family was asking me about my new boobs and how I felt about them... I just started crying, and they all kind of started laughing. Hmmm...so I started laughing. More because they made me feel like an idiot,but I couldn't keep crying. Then I let his cousin feel me up. She made me laugh for real though...