Great saying about depression
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Barbe ... what are they waiting for? Once the heart stops its a little late. What are the qualifications for a pacemaker in Canada. I agree with everyone else. You are too precious to lose. As for them thinking you are a hypochondriac - REALLY! You have some serious medical issues. Its like the epitaph on the hypochondriac's tombstone - "I told you I was sick!" Let's not wait for that. (((((HUGS)))))
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Barbe hope your birthday was a good one. Overcast today. Walked in a walk with hero husband, daughter and grandson to raise money for the cancer resource center in our area on Saturday. Was wonderful!! In-laws came and had a wonderful time. A good weekend. We have to grab on to the joyous times!!!!!
Hope everyone has a good week. I am so grateful for all of you!!
I think that this disease has given me a sense of caution about dreams for the future but at the same time a sense of gratitude. Does that make any sense?
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hopefulhealing, It makes a lot of sense to me. I am glad you had a great weekend.
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Kate are you out there?
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Barbe--How did I miss your birthday!! I am such a bad friend. Speaking of bad. . ..
sorry its not for real!
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Claire, that's worth being late for!!!!
Kathleen, the parameters are the same in the States. My sister used to be a nurse in the US so I get a lot of feedback from her. If I did a genetics test and the gene was found, they'd do a pacemaker. But the specialist says that right now I don't qualify for the test!! My sister said the same thing. I certainly couldn't afford a penny for any test, either.
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Kate come out come out where ever you are
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Hope and Diane- I'm here. I've been reading but haven't felt like posting. I've just been really down this past week. Nothing much new causing it- same old, same old. Just feeling worn out physically and emotionally. Too many issues- recon, fibro, depression, LE, DH's Parkinson's- the list seems to go on and on right now.
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ME TOO!! i miss her everyday.. 3jays0
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Kate I just sent you an email.
Love you!!Ok ladies...a good friend of mine was just diagnosed today with ILC. She doesnt know more as she is waiting all the pathology but she does know its early and grade 1. I just feel so bad for her cause I know exactly how she feels. That stunned overwhelming feeling. I worry for her cause she is older and she works so hard and just needs to slow down some and take time for herself. I told her she needed to take this week off work and absorb everything the doctor told her. I am glad for her that she sees my BS and I know she is in good hands and I am very glad they caught it early. I think. Cant they see your lymph nodes in your mammo??? She said the BS said he wouldnt know until the MRI if her it spread to her nodes. She is starting tomorrow on Tamoxifen and has to wait 20 days before getting an MRI. She is in menopause and stunningly has been on Premarin for years! Who prescribes that anymore with the risk???!!! She has to be off premarin before getting the MRI. We are having lunch tomorrow and I will pass down some of my books to help her understand her diagnosis. I am also recommending BCO of course. I told her how I waited till I was at my worst during chemo before I finally stopped lurking and starting posting.
Our BS is presenting her to tumor board but waiting for the MRI before coming up with a game plan. I feel bad cause she saw me on some bad days and now she is scared of what lies ahead...arent we all.
I hope you all are having a good week. I cant believe it is Memorial Weekend already. Where the hell did May go???
Love you ladies....hugs to all!
Diane
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im sorry to hear about your friend, didel.. she MAY have seen you, on your bad days.. but she sees you NOW: so she knows you made it!!thats' the best "visual" she could ask for...
Memorial Day Weekend is always a tuff one for me.. 5 years ago, my mom died over the holiday; and last year, my sister did.. so, im going to the beach, and then coming home, and pulling the covers over my head...
i MUST subconsiously be thinking about it. when i spoke to my nephew yesterday; he said who do you want to talk to next.. and i fumbled on the phone. I ALMOST asked to speak to my sister!!!!duh.....3jays
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Awww {{{3jays}}} Sorry about the tough weekend ahead. Thanks for reminding me I have made it through! good point.
Diane
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Come on Kate- you have to write to us at least every couple of days. I at least, need to know where you are at - mentally, physically, emotionally.
Diane, Too sad about your dear friend but at least she is starting this journey with a doctor highly regarded and trusted by you. Also, as said, she did see you go through the bad, the ups and downs, but she has also seen you rise to the challenge, hit it head on, have times of despair, but just kept on going. And look how wonderful you are now! She is very fortunate to have a friend like you by her side.
Yes, they still prescribe Premarin and lots of other HRT drugs for meno and post menopausal woman. I was on one for 7 years until my diagnosis. I went on them because of the raging mood swings and hot flashes. My dr said since there was no hx of bc in my family or heart disease and my mammograms since age 35 have always been clear, it was safe. After my diagnosis, I asked my dr if I contributed to getting bc because I took the HRT and she said no. I asked if being on strong IVF drugs for a year contributed. She said no. The oncologist also said no.
I guess the thing is bad things happen to good people. I just never realized the fallout would take so long to settle after my initial diagnosis.
The ONE good thing about me getting bc is meeting all of you and having you all help me along this path...........
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diane, glad your friend has you
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Diane, I'm sorry to hear about your friend. Leaf is the one on the boards who knows a lot about Lobular cancer. I was diagnosed with LCIS and DCIS and she was of great help. She writes very clearly without giving her own opinions if that makes sense. She gives very down to earth information and helped to clarify a lot of things as it is a different type of cancer. LCIS being very different from ILC as well.
Debbie I too was on HRT for 8 years before my diagnosis - also took IVF drugs. I went into very early menopause the the Doc put me on HRT as he said I was more in danger at that point for heart disease not doing anything. Later when I was diagnosed I asked the same thing. He said well since you already have an auto-immune disease(MS) then you were already at high risk having an abnorman immune systerm... Wow, don't you think he might have mentioned that one? There was also no history of BC in my family either.
3-jays- gosh that is so much to deal with, don't even know what to say. Glad you are getting away to the beach. I always find looking at the waves and hearing the power of the surf very healing - also just the great expanse of sky and clouds! I hope you will find comfort there as well. ((HUGS to you))
I also love what you said to Diane, yes she is doing great now and has the strenght to help a friend, that is pretty wonderful!
Awwww Kate... is the lymphadema getting any better? Do you have the new sleeves yet. I saw on one thread about this doctor in Charleston I think but she also works in Chicago and maybe New Orleans - anyway she has a Do no harm approach to BC surgery! Wish I had known about her. She is very against taking muscles away.... wish I had never had this particular reconstruction.... I'll find her name.... anyway, it was interesting to read.
I guess all the "holiday's " are hard for me these days. The kids will be with their Dad so I'll be alone.... Shouldn't have done it but sent a final reply to my ex-bf as it just kept nagging at me about his dig how all my gifts over the year made him feel like I kept telling him he would always have a separate life. It wasn't true at all and just had to tell him as I had really given him some things I had put a great deal of time and thought into. Anyway, I'm hoping now that will give me closure as well and can be done! Tired of thinking about him and need to move on.
Well, just planted some rasberry bushes so now need to make sure the yard guys don't pull them up thinking they are weeds! Thanks everyone!
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Diane- I'm so sorry about your friend but what I wouldn't have given to have a friend like you as I was going through everything! I hope she'll see someday what a gift that was. Let her know we're all here for her and send her some (((hugs))).
3jays- Sorry the weekend brings up sad memories for you. I know your mom and sister wouldn't want it to be so. I know you're missing them but try to bring to focus the happy times. I still miss my Grandma at the holidays. She went on a cruise once and discovered "Fuzzy Navels" and loved them so now my Mom and I order them and toast her up in heaven. It always makes us smile.
Stanzie- LE is doing o.k. but I've been a total couch potato as I wait for my sleeves, too. (The first ones were too tight so they had to order a second set and haven't gotten them yet.) My arms just feel so fat and ugly though my DH says it's all in my head. I think I know the doctor you were talking about- Dr. Marga Massey? She is the first PS I've seen that is as equally educated in LE treatment/prevention as she is PS. Shouldn't all BS/PS's be the same?
Just saw a thread called "My body, this stranger" and I think it summed up exactly how I've been feeling. Just can't seem to get reacquainted. Between the MX, recon, LE and the meno weight gain I feel like I'm walking around in someone else's body. I kind of thought I'd be more accepting of things by now but wish I could shake my body like an Etch-a-Sketch and make it all disappear.
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oooh I want one of those Etch-a-Sketches too! Yes that is the doctor - did you see her?
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Kate I know how you are feeling. I am in the same boat. Not raw grief but a sense of numbness almost. A sense of feeling sad about the things that have been taken. Things like a free and easy sense of joy. Waking up without thinking about BC or how the implants feel in my chest. A sense of not wanting to look in the mirror when I change and shower. A grief at how intimacy has changed forever. A sense of sadness about how my expectations and assumptions of what life was going to be are gone. And yes I know we never know but this is different. This has robbed us of a sense of peace and familiarity of who we were as women. I find snipits of joy and forget sometimes for a momement but not long. I am not sobbing but just sad. I function and am busier than I have been in over 2 years but with an underlying sadness. I laugh and work and plan but it is different. In fact at times I don't think people would have a clue as to how I feel when I am socializing because I can put on the public persona. Only rarely do I share with those of our friends who have not had cancer about how I am feeling. So hard to explain to those who have not gone through this. I will be seeing a couple I haven't seen since my diagosis and they have never been told what my surgery was. I am stressing. I know the first thing they will do (not because they are rude it is human nature) is look at my chest. I absolutely hate this and why I don't socialize much with people from before. We didn't have that many friends here at the time of my diagnosis anyway since we moved here and I traveled so much and worked over an hour from home. More friends now and most involved with cancer in some way and a few that have been wonderful and respectful of my need for privacy.
Diane I am glad you will be there for your friend. It is so important and makes such a difference to talk to those who have lived it and get it than to listen to the platitudes no matter how well meaning.
3jays and Stanzie I am sorry this is going to be a tough weekend for you both. I hope you can find a way to have a sense of peace and calm.
My friend with BC just underwent ANOTHER 9 hour surgery to try to fix recon after the latissimus dorsi flap got infected and failed. She has had chemo and radiation. Lost the implant due to infection. I think that is what is part of my sadness. The things we women go through the surgeries, scars, changes over and over The mutilation after all these years. While it is with better looking outcomes it is still there.
Okay and as always with the sadness comes an appreciation of the opportunities, I won't say blessings, that this has brought. A new set of women friends that are true and sincere and kind. A new sense of cherishing those I love. A new realization of what being real means. A new sense of power as I look back at what I have overcome and a sense of strength for what will be.
Sorry so long. I am determined to try to grab onto the joy that is there for me in this day if I accept it. I am not going to let this darn BC rob me of who I am and the ability to love those in my life!
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why does my neck keep getting flushed and red?
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Stanzie- I haven't gone to her but have come across her name a lot in my research. As much as I want to do something about my recon I don't think I have the energy or stanima to endure another out of town surgery. I've been trying to find someone here to have a consult with who does the fat grafting but haven't had much luck so far finding someone who looks promising. The closest is L.A. but even that seems like too much right now.
Hopeful- As usual you somehow read my thoughts and put it all down on paper. Thank you for that.
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kate, come to Chicago for our stuff, you can stay with me and be in the documentary!!!!
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Kate should say "your" stuff.
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Hopeful- Be careful! I might show up on your doorstep! Oh....wait....don't know where you live. lol!
Elizabeth1889 posted this on another thread- "I feel like I just cannot be the person I was before BC, but I do not know who I am yet." I told her it summed up perfectly what I've been feeling, lately.
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Wow, lots of depth of feelings here - raw emotion and grief. I know besides the innocence of my health, I've also lost some joy. How do we look forward to things when we don't even know if we'll be around? I thank God that I saw my two kids married and have been blessed with three grandsons since my diagnosis. For that I am eternally grateful.
I got up enough nerve today to call the cardio specialist but had to leave a message. I said I wanted another meeting as he left me quite distressed. Haven't heard back yet. I also repeated in the message about what he said about "sudden death is the way to go". Perhaps they will have him listen to my message at the end of his work day.
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Barb! Yes!!!
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kate you would be welcome anytime!
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I just read this quote on Bill Rancic's twitter and thought so many of us would agree
"Friendship isnt about whom you've know the longest..Its about who came, and never left your side.."
Good night sweet ladies!
Diane
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Barbe- I hope your message to the cardio guy is a wake up call to him that he needs to brush up on his bedside manner. I mean- who says that to a patient?!? Hope you get a response soon.
Hopeful- Thank you! I'll keep you in mind!
Diane- OMG! Love the picture of Charlie! It made me laugh!
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Hello to all you ladies! Been reading all your posts but not able to post much myself. I got stuck and it has taken a while for me to pick myself up off the floor again.
My MX is next Thursday and I feel like I am in a fog already, nothing seems real, I cannot believe this is happening. I am honestly not a drama queen but the fact that this time next week I will be minus a-part-of-me is becoming a daunting thought that I cannot get out of my head. I did see a counsellor last week who was very helpful but I need to do some work myself obviously.
But you girls make my day. I hear the losses and I hear the joys. Somehow we will all make it through right?
Barbe - I LOVE that you said what you did in that message to your cardiologist. YOU GO GIRL! And happy belated birthday
Diane - So you are the cupcake diva?!? Cupcakes are my fave, oh to have a dozen delivered here tonight... I would eat every one of them and not feel one bit guilty. Hey congrats on your mammo!! Also thanks for the invite to PM, I just might take you up on that. Love your Charlie, wish he could meet my Joey! (oh and double the icing on those cupcakes please).
Kate and Hopeful - I SOOOOO hear you. What Elizabeth1889 posted is worth repeating..."I feel like I just cannot be the person I was before BC, but I do not know who I am yet." I think I might add that to my signature quotes as I try to hold on to what joys I still have. Once my MX is over then the wait for my pathology and so it goes right?
Stanzy - Oh to be out in the garden planting like you! Good luck with the raspberry bushes. It's still a little chilly here yet to be getting down and dirty with the plants. That will be a part of my post-op PT
I will be gentle with me. Oh and pass the etch-a-sketch when you're done, think I'll be needing that post-op too!3Jays - you know when I feel my world falling down around me, my mom is my go-to telephone person (she lives about a 6 hour flight away) I seriously do not know what I would do without her at a time like this... probably what you did, pulling the covers up over my head! I hear you.
Goodnight to all the angels on this thread!
Donna
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