Great saying about depression
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sorry Kate
you are one tough cookie.You have alot on your plate but your sense of humor is remarkable.I wish i could come help you,do you have your husbands family or your family near by?0 -
beacher- I have my Mom, sister, 2 stepdaughters and a nephew close by and another sister who is 2 hours away. All of my DH's family are in southern and central California and basically never visit. (Actually, that's a good thing, though!) So far we're doing o.k. This morning was a strange one, though!
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kate: im so sorry you and your DH had such a rough morning.. ive had meds do that to me, and its sooo awful!!!its' sweet,he was trying to keep you away from a snake..........praying for you, and your family.......3jays0
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Oh Kate, how very scary for all of you! No I don't remember hearing Michael J. Fox talking about that either. On a normal basis does he know hallucinations are possible? If so can you talk to him after the fact or would that upset him more. That is so sweet he wanted to protect you! So sorry, you do have your hands full....
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Oh Kate!! I am so sorry to hear of your morning. He really was trying to protect you. . . you are now my bravest person I know--for all that you are going thru. What strength.
I'm listening to Mary's music right now. LOVE her voice. Helps so much to put a voice to the words that we have read and the feelings we have shared. Beautiful.
Tonight is the viewing and tomorrow is the service for my young friend. The family submitted two obits in the paper. The first was a the standard, here is his family, he will be missed. Yesterdays was a love letter from his father, talked of all his passions, his love for life, and how much we should all cherish our loved ones. Truly a testament to a father's love.
Friday, I cleared some ground in our back yard--basically pounded the holy crap out of the dirt-taking out some of my frustrations at how unfair life is--screaming at the earth---and planted some wildflowers. I want something beautiful to come out of all this ugliness.
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Oh Claire!!! I cannot imagine how horrendous this is for all of you! I'm just so sorry. I bet working outside really did help at least physically to get out some of the rage and anger at the sadness of everything and hopefully when the beautiful wild flowers come up it will help heal some of the emotional pains and wounds. I don't begin to know how to deal with such tragedy but they have you and your family and I know they are so grateful of your amazing love and care. Just know that as unthinkable as their pain must be you all are also in pain so remember to take care of yourselves as well. Sometimes people close can forget they need love and care too! Again so very sorry.
But what a lovely expression of love for the Dad to do - I'm sure it helped him and hopefully will help a lot of other people as well.
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Stanzie- The doctor had warned us about the possibilities of the hallucinations from one of his meds. He's had some minor ones- sounds, shadows, etc. but nothing like this. His neurologist had recently upped his dose of this med which basically tricks your brain into thinking it has more dopamine. We might have to back off the dose. He's going to call his Dr. this morning and see what he advises.
Claire- You and your friend's family will be in my thoughts. I went to the service of a young child years ago and it was gut wrenching. I'm wishing you strength and love to get through these next days ahead. I hope the gardening was therapuetic for you.
Today is my first day at the BC Rehab program. I'm not looking forward to it. Just one more reason to curse BC. I'm getting evaluated for LE and starting PT for some post surgical issues. I know it's going to hurt (but will hopefully make things better eventually), it's a 45 minute drive away and I'm sure it's going to be expensive. (Guess I should have asked when I made the appointment.) Just mad I have to do it at all, which makes me mad I had surgery, which makes me mad I had BC, etc, etc, etc.
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Hello Kate - my dad and my brother had those types of reactions to strong pain meds given to them at hospital, so I think I can relate. It's more than unsettling to say the least! I was already anxious that they were in the hospital to begin with, to see them reacting in this way was scary for me.
Wish I could be in your pocket today as you drive to BC Rehab, not sure what that involves, but I know you are angry and sad all at the same time. This BC can be such a *itch. Today I am at my wits end too, STILL waiting to hear on my path report after 7 weeks, totally ridiculous but thats our health care system up here!
Sending you (((hugs)))) today,
Donna
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Kate - well maybe I'd get squished in your pocket, so I'd be happy to take the passenger seat! And please let us know how it goes at BC Rehab.
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Kate, hopefully insurance will pay for some, Yes? I know it won't be fun or easy but hopefully you will start to get some relief....
Quilted- 7 weeks? Wow, that is really a long time, I'm so sorry...
I'm just so out of sorts.... I broke up for good(I'm thinking) with my BF of 5 years - it makes it a bit odd as there wasn't much closure. I pretty much had enough and wrote him an email saying it was over and got one rude email back and no nothing. Which is probably good but a bit unsettling. So trying to keep busy and not think about it.
My brain isn't firing totally as I keep losing things like crazy. Also still dealing with all the insurance stuff from my wreck and then my elderly couple friends - well the husband is turning 85 on April 6th and is planning his own surprise party - LOL!! Trying so hard to think of something special to do for him but .... nothing coming to mind I'm afraid.
Coming up on Spring Break for my kids which is going to be odd as they are with their Dad's so hopefully I'll get some much needed house work done just wish there was something more fun to look forward to... Love and adore my new puppy but wow is it ever had to get things done with him around. OK, sorry rambling... so many of you are dealing with such huge issues feel weird sharing my little stuff but maybe it will take you mind off bigger stuff at least to a minute or two.
Barb - any news on your Kidney?
Kate- hope they can adjust the meds. That really must have been so scary.
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Kate,Sorry your husband is going through this. My BIL had Parkinson's and the dementia that sometimes occurs with it so I know how difficult it must be to be dealing with both of your diagnoses at the same time. Include me in your pocket party for rehab. I am goin on a trip but need to look into that when we get back.
Quilted, Are they that backed up? It seems like a very long time to wait.
Stanzie, Hope your insurance gets things straightened out soon.
Raining here but the sun is shining somewhere. Have a good day everyone.
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My kidney issue was from two years back. I have an ultrasound at the end of March to follow up on 3 abdominal hypoechic cysts that were picked up on a CT scan I had. One of them is apparently my lost ovary!!! This will be amusing....
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Quilted- Glad you decided to come over and join us here. (And I assume you're in your p.j.'s? lol!) You are welcome in my passenger seat! I would love the company on such a long drive. Sorry you haven't gotten your path report yet. I think I'd pick up the phone and start kicking up a fuss. Squeaky wheel and all that. 7 weeks is ridiculous! I had mine at my 1 week post op visit with the BS.
Stanzie- I sometimes think it's the little stuff that becomes overwhelming especially when there's a lot of it. Either that or I'm less able to deal with multiple stressors after BC. For some reason I seem to be very ADHD lately even without a new puppy! Not sure if that's a BC thing or a middle age thing but it's hard to stay focused.
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Ok girls had to get back to here, I CANNOT believe the miscommunication I just learned about from the cancer clinic. But first...
Stanzie - hey you have alot of stuff happening too like Kate. Believe me we all have our stuff! So please keep spilling your feelings here so we know how you're doing. Right now I feel like I can hardly spell but I will calm down soon and will keep tuned to this thread.
Barbe - how about that ovary! Absolutely amusing
ptdreamers and Kate - well the Canadian healthcare system is slower than the US for sure. The pathology department is aiming for a 2 week turn-around time for getting results back to surgeon. Right now it's a 6 week turn-around time because of a "pathologist shortage". My results were done in 5 weeks but my BS was away. When she called last week (week 6) she called my house phone and I wasn't here, but she has my cell phone number and that's the one she has called on before. She left a voicemail telling me she would try me on my cell and if she didn't get me then please call her office. Well no call registered on my cell from her and I called her office twice last week to ensure that she would try again. My cell phone number is now the first contact number.
NOW... get this... I get a call from the cancer clinic today they would like to book me for radiation. I told them the above story and the nurse said "well actually there is a note that we're assuming you were not interested in further treatment from BS so better get on with radiation". I HAVE NOT EVEN TALKED TO BS YET ABOUT PATH REPORT, ALL I KNOW IS THAT MY MARGINS ARE NOT CLEAR AS REPORTED BY MY GP. Holy you-know-what, wasted another whole week of waiting. I got back on the phone to BS office and they updated their database that I wanted treatment ie. clear margins be-it by re-excision or mastectomy. And the receptionist said she would also put a post-it on BS's computer screen for urgent. I am barely holding back the tears right now, I know it's not the end of the world and I will be tended to soon but the tension is unbearable. I have a list of questions about my pathology and want to get a treatment plan going. Oh man what a time to be out of wine!!!!!!!!! Thank you for letting me spill here, hope I won't be too embarrassed later
Donna
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Oh Donna- how horrible!!!! I can hear in your post how upset you are and wish I could give you a huge hug and a huge glass of wine! I am so sorry, that is just so wrong on so many levels. It sounds like you were holding on - annoyed, frustrated and worried about the wait but then the call saying they thought you were not interested in further treatment from you BS just put you over the edge as it would anyone!!! I certainly hope your BS calls you very quickly and apologizes and gets it all straightened out. If you get any more run around, I think I'd go to the BS's office and say you just have to see your doctor in person and get answers as this has gone on way too long and too many important pieces have been dropped or gotten confused.
Oh I am so so sorry - how on earth can they treat a BC patient like this. It isn't right at all. Hopeing someone brings you some wine and you can relax and get some sleep and really tackle this full force tomorrow. Thank goodness it isn't Friday afternoon! Please let us know how it goes! Thinking of you!!!!
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Hi Everyone...popping in for a quick hello. Lots to read.. Donna I can not believe what a screw up getting your path report. I got mine in maybe 3 days post op. Thats crazy,...sorry you are having to deal with that. It is very stressful when people dont have any sense of urgency or a care in the world. I am sorry your margins were not clear. Is this from mx or lumpectomy? Did you say it and I missed it..if so sorry..I had a lot of catching up.
Claire hope you are feeling better today...been thinking about you. So glad that you posted and came back when you did.
Group HUG
Diane
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Forgot I wanted to say.. Stanzie...your puppy is making you forget things. When Charlie was little I felt like I had a newborn ..I was sleep deprived...and forgetful! But you know its worth it and thankfully after a year and a half he learned to sleep later...thank GOODNESS
Good night all..back to work
Diane
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Thanks for understanding Stanzie and Diane, just a horrible afternoon.
Had one smirnoff and OJ to settle down, then went out and played ball with Joey our border collie, such a blessing he is (it will get better with puppy Stanzie, promise!).
Then I got on the phone to my Cancer Clinic Navigator but it was too late, got voicemail. Left a partial message then broke into tears (embarrassing). So once I calmed down I followed up with a long letter by e-mail, complete with dates. Now I'm mad and I guess that's the next healthy stage after breakdown. How could anyone ever conceive that I would not want further surgery with unclear margins. Who is making these decisions for me? I asked on the e-mail. I actually quite like my navigator, should have called her before, she is well connected and I trust that she will have good advice. From now on I will be calling the surgeon's office daily. And I am going to be forwarding the letter to the regional health board and further to provincial health. Only when you experience the system do you realize how bad it is, oh well, live and learn, I will not wait this long again.
Thanks so much again for your support, it helps so much.
Donna
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wow!!!just gotta say: Claire: your family, and the young mans has been, and will remain on my prayer list; if you'd like that.. i never know..
i did light a candle, as well, for MBJ, and included blessings for all of you.. i try to remember what i believe isn't imp : its what YOU believe, that does.. I hope you all find some comfort, its so hard to lose a young one, and to suicide.. worse..
we had 3 near misses with my #3Jay when he was pre teen, i was one of the lucky ones...
and Diane: i CANNOT believe that happenned.. im always amazed that the drs are so unthinking, when dealing with breast cancer!!!
i didn't wait for my path, charged ahead to the PS opinion, and by then, they all knew me.. i just kept calling, day after day.. im so glad you have a good nurse navigator.. mine was so good at unsnarling all the problems dealing with follow up i had, also..
Stanzie: so sorry for the BF mess.. no closure really is a biatch; but someties the nastiness allows us to realize the decision was right.. unfortunately, it doesn't hurt any less. only time will do that, i'm afraid.. and a new puppy never hurts!!!
a furbaby is THE best in bad situations, ive found.. that, and working in the garden.. i too, p;ant flowers for those i've lost.. most of my flowers here are "dedicated" its' been that bad the last few years..
here we all are, on the depression thread; and everyone of us has a good reason to feel that way.. yet, thank goodness, we have each other, to hold on to...
thinking of all you gals...............3jays
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3 jays- you are so wonderful!!!!
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Donna- Sounds like everything fell through the cracks and that should never happen with a cancer patient. They should have double, triple, quadruple checks in place to make sure there's proper follow up. I would have been livid (and in need of a glass of wine, too)! I hope someone follows up with you today, gets it straightened out and a few heads roll, too. (((hugs)))
Stanzie- Sorry about your BF. I know you two have had some problems but it's still hard to let go. And doesn't sound like the ending brought closure by any means but I think 3jays is right. Just knowing he would respond that way shows he is not the one for you. You deserve someone as loving, wonderful and caring as you are! Nothing less will do, girl!
Claire- Thinking of you today. We're all here for you and sending you strength to get through the day.
So I went to my first day of PT at the Breast Cancer Rehab place. Not much PT- mostly evaluation. Definitely have some early stage LE in one arm so will start therapy for that and she's ordering some compression sleeves (oh joy). She was optimistic that we have caught it early enough, though, and that no huge (pun intended as in the eventual size of my arm) issues should arise. She also said I've got some issues with frozen shoulder on the opposite side, scar tissue that's formed on the LE side and my posture is messed up and somewhat "hunched" from all the surgeries. So basically I'm a mess. Wish people would realize this whole thing isn't over when the MX is over. There's a huge ripple effect on our lives- physically, emotionally, sexually, psychologically. Said it before- it's the gift that just keeps giving....or is it taking? I'm looking at my list of exercises I have to do 3x day, the cost of all this PT, the cost of these sleeves which I'm sure will just be so comfortable to wear when you live on the surface of the sun like AZ, the thought of one more thing causing pain on an already long list and generally just feeling sorry for myself. So just having one big pity party for myself today! :-( Anyone want to join me? I'll bring the wine to go with my whining!
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hello! Donna,Sorry that happened i am once again amazed at the irresponibility of these bc doctors! Get on it ( like i need to tell you that) we have to be a our own advocates 'ALWAYS" for the rest of lives.
Claire, Praying for you, and the family
Kate, Keep going and hopefully with time you will beat the LE and get you r self feeling stronger,and that in turn will help you emotionally...like i said you are a tough cookie (not that you have a choice)
Im going to Palm Spring with my daughter for a one night getaway,we use to do this alot through the years but its been a while since bc came so we are renewing our palm springs time sun, dressup and dinner Girl time! we have a great memories and i am now ready to continue them !! i will always leave my posts with this statement though...I HATE BC i love you all
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Stanzie sorry about your BF I just re read the post and realized I missed it ..Maybe a little break will give you time to focus on you and what you really need. {{{hugs}}}
beacher ENJOY that girls weekend. Sounds awesome...I could use one of those...
Kate glad PT wasnt too stenuous on you...or are you feeling it today. I dont think I understand what frozen shoulder is. It certainly doesnt sound good. When I had my LE evaluation she said my right arm was a smidgy bigger but she didnt think it was anything to worry about. I think I go this summer for another measurement. I worry about that right behind a recurrence. I hope the PT does the trick for you. Although...my lazy butt cant imagine exercising three times a week let alone 3 times a day. UGH! Hows your DH feeling today?
Barbe arent you waiting on pathology results from your surgery?? Or did I miss it..if so sorry I feel so scattered these days with so much work.
So ladies...I have a consult with a new oncologist in a couple of weeks. I like my oncologist but I HATE the hosital he is associated with ...how they remodeled the cancer center without any regard to their patients privacy...and they have the rudest staff in the state. I am meeting with a Dr. at Johns Hopkins which I feel so lucky to have gotten in with him. My love PS got me in. He is a brilliant doc and I heard Hopkings newly remodeled breast center was like a SPA!!! Just from my conversation with his nurse today she was ten times nicer than anyone I've dealth with thus far at the facility I am currently going to. Let me tell you ladies..I can not WAIT to send a letter to the president of the hospital to let him know how disappointed I have been with their facility and how little compassion they show for their patients. Theyve made all these changes that clearly they have done for pure $$$$ reasons. They remodeled the cancer center and added new rooms...on my last visit..while I waited 45 minutes in the exam room...I could hear every patient/doctor conversation in the rooms all around me. It was disgusting. I had questions for my onc but I didnt even want to speak cause now I know the whole place can hear you. It was the last straw and I know I am only one patient but I am sure more will follow.
Anyhow, looking forward to meeting the new onc. I hope he has a little bit of a personality.
Good night all....back to the grind. Love you all!!
Diane
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Diane, my path was B9. My thyroxine levels are still too low and will be increasing my meds tomorrow. I hope it works as I kind of crashed after feeling SO great after the surgery. Thanks for asking.
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Stanzie I am so sorry you are dealing with another loss. He doesn't sound like he deserves you, but it is still a loss. Haven't we had enough losses? My hope is that you will find someone who can be your hero like my husband is for me.
Donna, I am so sorry you have had this disruption in your care. It is unexcusable!! I am glad you are going to write to the people who need to know about this! I have learned in two years that you HAVE to advocate and push to get things done and to be heard. I try to do it in a nice way but I will do whatever it takes to get the care that is necessary and the answers that I seek.
Kate, I am sorry you have the LE but so glad you were able to get in with someone who sounds competant. It just seems like it is always circling us at times. I had a really nice dinner with a co-worker and then it hit me all I had lost.
We were at an outdoor shopping mall over the weekend and it was in the 80's here and I said to my husband okay great entering the season when the boobs come out. I look at women who have their own boobs and nipples and I can't help but feel sad at what I lost. And many of us have lost. It is a slap in the face. Then I wonder well maybe I am looking at a reocnstructed breast.............. who knows right. Just sad.
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beacher- Have a wonderful time with your daughter!!!
Diane- Hope the new oncologist works out and the facility is more patient friendly. My GP, whom I love and adore, just recently changed offices and I HATE her new office staff. They are absolutely dreadful so am torn because I love my doctor so much. Am definitely going to tell her next time I see her.
PT wasn't strenuous- just an evaluation on the first visit but have another one tomorrow. Frozen shoulder just refers to a condition that causes restriction of motion in the shoulder joint. The capsule surrounding the shoulder joint contracts and forms scar tissue. It can be caused by tucking your posture in a position that protects your chest- something we all tend to do after breast surgery. It can also be caused by your shoulder being immobilized during lengthly surgeries. The hard part is it makes it hard to do the massage/exercises on the LE side because it hurts to stretch enough to do them. That's why she wants to work on the shoulder right away.
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Oh Donna!! I cannot believe the crap you have gone thru. There has to be somebody high up in the muckety muck chain of command that will listen and get you the answers you deserve. So sorry you are going thru this.
Diane-Hope Johns Hopkins shows you the love. I can't imagine a cancer center that has insensitive and unfeeling staff. Common sense just dictates that it takes a special angel to work with oncology patients. I have been pretty fortunate at MD Anderson, everyone has been very kind.
Kate- good luck with the PT. I'm sure it will bring you some relief. As painful as some of the massage may be, it feels so much better in the long run.
beacher---Girls weekend---how fun!!! pamper yourself and ENJOY!!!!!
Hopeful--I thought it was just me that stared at every woman's chest--"are they real?" "damn those are HUGE!" " What a cute top, really wish I could wear that--oh well. . ." I don't think I have yet to see someone that I can say "hey, she looks like me!" I always wonder if i would go up to her and give her a hug--but then she would think I am a nut-job.
3Jays and all--thank you for your kind words, thoughts and prayers. The last two days have been pretty hard for my guys, my DH is just tore up. As scout leaders, they take all the boys on as their own. And as more of the story comes out, it appears it very well may have been an accident. Police haven't made the call yet. My DH believes that there is no other way--and that is how he is going to remember him. Either way, its just heartbreaking.
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3Jays - thank you for your support, yes we cannot underestimate how fortunate we are when we do receive good care. I am grateful I have a good "navigator" who helped to sort things out today. She's an answer to prayer.
Kate - I read your first post for today and I can hear your feelings, you obviously had quite the time at PT. Why all these things seem to come together at the same time I have no idea. How many times do I look skyward in exasperation, sometimes with a laugh, sometimes with tears, and quote Mother Teresa "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Now, ain't that the truth. My hubby brought home 2 bottles of shiraz tonight. I'm saving the second bottle to share with you and the chicks here whenever the need arises again. We can each have our own glass sitting next to our computer, ipad, whatever and have a <<cheers!>> together.
Beacher - just love your avatar image, so sweet... snuggle, snuggle! Have fun making more memories with your daughter in Palm Springs. Oh to get away!!!!
Diane - hope the new ONC works out. I'm fortunate too to be going to a breast cancer clinic that is more like a spa than a clinic. The staff is wonderful, and the environment is very calming (low lighting and soothing music) and very, very private. It makes all the difference. I had my core biopsy and wire localizations there. It was the perfect setting.
Barb - congrats on B9!
Stanzie - I agree with what hopeful said about your past BF. It's still a loss and haven't we had enough losses. From reading your posts I can tell you are a very loving person. And like others agree, you deserve better girl. I've been there too. It's the alone-ness that makes it difficult, if you can get past that you have it made, and that's what critters are so good at, filling the gap and loving us unconditionally. I got out of a very bad relationship a number of years back and since then I have married an amazing and loving man. So glad that I stuck it out and then found him. You can too!!
Hopeful - what you experienced at the mall is what I am dreading this year. It's still not quite warm enough here yet for boob season but I know that soon they will be blooming everywhere. I lost about 3 quarters of my right breast in the lumpectomy so that quilted-ta-ta is feeling a little out of place. So far my form-shaped bra is doing the trick and from what I hear some of the peasant style gathered type tops will be all the rage this summer so maybe fashion will be kind to us.
Claire - I cannot imagine what you and your family and friends must be going thru after the tragic loss of this young boy. All a person can think is why, why, why? Feeling for all of you, and praying for moments of simple comfort as you go through this pain.
Finally the story on my pathology report:
My BS called this morning at 7:45am and was very upset about what happened yesterday. My BC Navigator Nurse called at 8:30am. And we did get everything straightened out and back on track. Basically there is nothing that could have been done about the pathology report taking 5 weeks to process. That's a known problem in the pathology department, most definitely due to the pathologist shortage and their backlog. For 1 week the results went nowhere because the BS was away and then in the final week (week 7) there was a miscommunication in the weekly BC Team meeting where the BS, Rad ONC, Med ONC and others discuss individual BC cases. I have an unclear margin on the anterior side, next to my skin, so the only further excision option would be MX since the BS cannot take any more tissue next to my skin. My BS communicated that her recommendation for me would be boost radiation. From what I gather, the pre-mature call from the radiation clinic was probably as a result of hearing that recommendation and not realizing that I had not even been involved in the discussion yet. My BS tells me that MX is also a valid option though she tends to think that this is often pushed by the BC Clinic and is over-treatment for my particular situation.
I will be having a meeting with my BS and another with the Radiation ONC to discuss my options, risks, etc. so that I can make an informed decision.
So good to feel the weight of the world taken from my shoulders when I realized that the ball had not been dropped, and then to learn that my diagnosis is still DCIS, that was such a relief as well.
Thanks to all you chicks for your caring words!
Donna
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Donna, even though some would think it added to your stress load, doesn't knowing what is going on actually EASE your mind? We NEED to know what is happening in our own bodies to be able to commit the "energy" needed to deal with it. Not knowing where and what is just horrid!!!!
Stanzie, I haven't commented on your "loss" yet as I'm wondering if it really is a loss. It seems like you carried the relationship for too long and when you needed him to step up to the plate, he was out in left field!! (I made that up!!) When I finally got rid of my first DH the GUILT at the relief I felt was confusing!!! I hope you can sort through your feelings to find you are on the right path.
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Donna- Glad everyone finally communicated with you and acknowledged it was mishandled. I know you have a big decision now about how to proceed. I think there are some great threads on here for those trying to decide between lumpectomy and MX. Not exactly your situation but they'd definitely have some pros and cons for each. Glad to hear your dx is still DCIS and you have those options.
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