No treatments for me.
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Checking in - I have not had internet for a couple days, so just catching up. Am cheering for Cin - do it YOUR WAY, girl!!!! I am so so sorry you are having to go through all this, am so proud of you for remaining true to yourself. You are such a brave woman. And Elaine, you are another very brave woman to support your sister through this very difficult journey. I pray that you both have peace throughout each moment of the day, even with the pain and stress of being separated geographically.
Carpediem, hoping all goes well for you today.
I was invited to give a presentation to a large group of toxicologists this week, and I talked about living with chemotherapy-induced peripheral neuropathy. There were over 200 researchers in the audience, from pharma, FDA, other regulatory groups, policy groups, researchers. I asked that they continue research to find cancer cures that are not so toxic, cures that will provide a decent quality of life along with extending that life. I reminded them that there are many out there who either decline treatment because of the SEs, or quit treatment, or live with pain and poor quality of life, symptoms that they live with 24 hours a day, EVERY day, without any relief. I got the most applause of any speaker for the afternoon, and many of these researchers came up to talk to me after the presentation. I cannot do nearly the things I did prior to BC and chemo, but I CAN share my own and our collective experiences with those who are trying to find answers.
You were all in my heart as I did this. Love to all, and special prayers for Cin and Elaine.
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Carpe, my fingers and toes were crossed for you xx
Linda, you write so well and I'm so proud of you xx
Cindy, hope your comfortable and reading something good.
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Linda-n3 - BRAVO to you. Well deserved recognition. I think the pain of treatment is often something no one wants to question for a variety of reasons, and so we are stuck with what we have. People have blind faith in its curative value, or they are conditioned to fear the cancer more than anything else, or they are told that questioning treatment is somehow irresponsible or ungrateful. But we patients have the right to be made better or else comfortable. Not to be half mutilated (in a manner of speaking). I know some people have no SEs, but these treatments are not cures anyway.
Good for you - and I am glad you got a great experience out of it.
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Carp...how r u,what happened?
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Hi ladies, thanks for checking up on me! Yesterday was a whirlwind between the appts and my daughter's after school sports event, traffic and all of her homework.
They had a bad time getting the IV connected, multiple sticks in both arms by multiple people. they finally figured it out. One nurse told me I was dehydrated (duh - can't eat or dinrk 4 hours before the event which was at 10 - did they think I would drink water all night) so I said - how do you start IVs on severely dehyrated people then? Hah. Don't blame the patient because you're all having problems getting it to work. I had some great veins. Anyhow, did the CT then the thyroid ultrasound, which was painful only because of them shoving that wand into my adam's apple, throat, etc. I tried to peak at the screen - she was measuring something, I can tell after years of breast issues. I'll know next Wed for sure, so until then, living like there is no tomorrow, because who really knows, right?!
Hope you are all well. Cin, if you visit, hope you are resting easy. Elaine, hope your business is taking off! Blondie, Linda, Athena, Ali, April, hope you all can find something beautiful to see, hear or do today, even just a small moment of peace.
xo
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Went for my first physio on my lumpectomy scar and arm. I have been waiting since last June. It hurt like hell but what a difference it has made. I can move my arm better and my scar tissue isn't hard or lumpy anymore. I love this woman !!
I told this woman she is the only person who has helped me and couldn't thank her enough. I will go for weekly physio and she told me she could help with the swelling in my hand.0 -
Cindy-Rose I think of you every day
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Ali, wow! After one appt? That is so wonderful!!!
Looks like Cin was on the board a few days ago, so let's keep posting our notes to her! Hi Cin- my book comes out in a few weeks, I am sending you a signed copy!!0 -
Carp, they are still using your veins, so jealous the friggin port is pissing me off, there are issues with it everytime I go...next wednesday, that is so far away....
Cin and/or Elaine, thinking of both of you!!!
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Oh Blondie, sending you a big hug, sweetie!!! I am blessed. I hate complaining about my stuipd crap out here because you are all dealing with so much worse.
Cin, you have to see this thread on the stage IV board, dumbest things docs ever said to you...
http://community.breastcancer.org/forum/8/topic/801815
Some of these made me laugh out loud!!!! I know you could add to this list!
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Carp not really and there are people worse off then me.....and I was just reading that....they are funny!!!
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I'm just dropin in to tell ya'll I'm still alive but the string I'm hanging on is screwing with me a lot! One day I think I'm taking my last breath and the next day I' able to wash up with some help from my bff. I hate that everyone here has to suffer so damn much, but this is how we find out just how much me can take...whether or not that was something that we even wanted to no. Today I feel like shit and am waiting on my medical director at the hospice thinks there's any way to make my coughing lighten a little. I'm not holding my breath that they have anything new but they're trying, I'll give them kudos for that.
All my love,
cin
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Cindy-Rose,
I've read many of your posts. You are in my heart always. You have been through so much in your life. I'm praying with every molecule of my being that your cough lessens and that you have good days ahead. Can you feel the love? {{{hugs}}}
Julie
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(((Cindy-Rose))) I hope you get some relief. You are so brave! Praying for you daily.
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Cin thanks for checking in and you are so brave.....thoughts are with you everyday!!
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Cin, any chance they could drain the lungs somehow. I hope you get some relief and thank you for being here with us! Hug your BFF for us, she's our proxy/stand in, we would all be there to help you if we could!
xo
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Want to add my good thoughts and prayers to the others.
Carp, hoping for good news on your results.
Cin, always thinking of you and sending you streams of peace and happiness and asking the angels to sooth and relieve your poor sore lungs....
love lorna
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((((Cindy)))) Your sense of humor and hardiness always shine through - I hope they get that coughing under control. You are a repo lady and a match for the cancer.Selfishly, I am so happy you are stil with us. (It's the M&Ms!)
Here are some more:
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Group portrait:
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Cindy - sending hugs and prayers to you and your loved ones. Your sense of humor is still shining bright.
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While I hate intruding in this thread, I just wanted to say that one of the only reasons I am still checking the board at all is to see how you are doing, Cindy. You are truly one of the bravest women I "know".
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My middle daughter's depression is getting worse and she took to hurting herself with a knife. She is under the hospital but the guy we see is on leave, I spoke to someone else and she spoke to my daughter. This person then said I think she is fine but hide your knife away. I told her thanks for nothing, then went to my GP who is our family doctor and know's us well.
He said she is worse and we all agreed to start a low dose of antidepressant. I don't know how I'm holding it together but I am.0 -
it happens more than you know...if she wants to cut she will do it with anything, they do it with paperclips....she probably needs counseling!!!
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ali,
I would strongly recommend that you make arrangements for closer monitoring of your daughter. Can she join a hospital day program? It may be advisable to have her hospitalized while she gets used to the anti-depressant. Sometimes anti-depressants cause people to become temporarily more suicidal. The reason for this is because initially, many people are too depressed to have the energy to kill themselves or even formulate a viable suicide plan. At the stat of treatment with many common anti-depressants, a person may begin to feel more energized but still depressed before they start to feel happier. That intermediate period of being energized without being happy is where some people may formulate or carry out plans for self-harm.
Whoever told you about the knife is, as you suggest, an idiot. Your daughter needs to be monitored medically. I do hope you have the wherewithal. Right now, the therapy is less important. She needs medically supervised care. You or any other person cannot do this by yourself. You need the institutional support of a hospital setting. I am not surprised that you feel overwhelmed.
Please get help, and keep us posted.
Hugs, and best to you and your cub.
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I applaud everyone who make a decision of their own rather than just following given advice without giving it any thought. It's an inspiration to me since I have had difficulties trusting my own instinct and need to learn how to get better at that.
I would just like to send a warm thought to you. I was really provoked when I read your doctor's comment about "a few months left". No matter what statistics might say I can't stand it 1. when hope is taken away and 2. statistics are applied to single persons.0 -
I want her to go into hospital but they say she is not bad enough. My gp is great and will speak to the hospital on monday. She has terrible moods and when shes bad she sleeps in my bed.
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Will be thinking of you, ali. Definitely keep an eye on your daughter and do not take any threats or gestures idly.
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{{{Ali}}} so sorry about your daughter, sending you a hug. I am sure you don't want to let her out of your sight. Hope she gets the care she needs - maybe she could read some of Demi Lovato's posts on the web about her cutting and depression/bi polar. I think she's pretty inspirational to young girls and some of her songs about recovery are great, like Skyscraper. Cutting is unfortunately becoming more widespread, I know two of my daughter's friends who tried it in 8th grade, one has scars on her legs.
http://www.people.com/people/article/0,,20612416,00.html
http://popwatch.ew.com/2012/07/17/demi-lovato-cutting-bipolar-disorder/
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Just got back from my week away, am catching up with everyone here.
Cin, so glad you were able to post a quick note. I know how much energy that takes for you to do, and I am so grateful that you care enough about us to let us know how you are doing. Is your cough from fluid or from mass effect? If from fluid, draining it might help, but if from mass effect, it is much more difficult to help. In either case, I am hoping your docs can find some relief for you. I am hoping you have enough energy to get outside and enjoy some fresh air. I continue to be amazed at how much better I feel if I can spend time outside each day rather than cooped up in the house with computer and TV.
Ali, I concur with those above who encourage you to be persistent in seeking medically supervise care for your daughter. The warnings about suicidality with the antidepressants should be taken seriously. Too many young people with significant illness are ingored because the health care providers are uncomfortable or unknowledgeable about how to deal with them, often chalking it up to "normal teenage" and "hormonal" changes. Indeed, many of these kids are going through "normal" developmental problems, but cutting and other behaviours you have described go beyond "normal" and should be taken very seriously and treated aggressively NOW so that she can get back on a more normal path.
I am recovering from a very long trip, am totally exhausted and have a major pain flair today, which I am sure is from fatigue. It was a great trip, I got to talk to some important people who are involved in research, and I got to spend a couple days with my mother and DH doing some sightseeing in San Antonio. The weather was fantastic, the city was crowded because it was spring break, but overall a wonderful trip. It may take me the rest of the week to rest up, so comments will be short, but I am still thinking of each of you, thankful for each of you, sending lovingkindness to each of you.
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I have a fibroid.
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