STEAM ROOM FOR ANGER
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Seachain, so sorry to hear about your friend. What a devastating diagnosis, and so little time to prepare for what's ahead. Her daughter is going to need a lot of support in the months ahead. What a shame they wasted so much time with their estrangement. A good lesson for all of us, I think.
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So sorry to hear about your friends Mom. As I said above, the role of caregiver is as tough as it comes. Hopefully you friend gets some relief with nursing and other people to be helpful. I also think it is amazing she can be there with someone she had conflict and hurt feelings. We should all be able to put conflict aside for the greater good.
My own experience with the day to day depression and lack of any symptom relief broke my heart for my Mom. Though I was sad when she died, I was happy her suffering was over. Cancer robbed her mobility and dignity. It was awful. I can empathize with your friend.
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Mara, my friend is the Mom, not the daughter. 2019 didn't start very well for me, emotionally. On the 1st of January, in the morning, when I went to check on my next door neighbor, I found him dead. He was my friend for almost 20 years. 2 days later, the lady I spoke of in the previous post informed me of her pathology results. Next day, the husband of another friend, who was a stage IV BC sister, emailed me to tell me that treatment stopped working and she was in the hospital, loaded with morphine, going in and out of consciousness - she died a week later. Now I'm witnessing this friend slowly fading - the person she was, her kindness, her sweet heart, gradually replaced by what the tumors in her brain are changing her into - we Skype almost daily. It's heartbreaking.
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I am so sorry Seachain. Cancer is terrible. My own mother died of lung cancer Jan 17 this year. It was painful to watch it rob her of her mobility and cause her suffering. Caregiving as a stage 4 cancer patient really took a toll.
I am also sorry about both of your dear friends. Many gentle hugs.
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Mara and seachain- I am very sorry for both your losses. It’s a terrible way to start the year. Having witnessed close family members die of different cancers when I was still a teenager, I remember well the suffering.
Dear Runor- could we be sisters? The stupid cough- I always tell people it’s from rads. I finally brought it up to my MO last month. She ordered a CT. Two new spots on my lungs. Too small to biopsy. Recheck in 3 months. WTF?!!
So now I have this hanging over my head for 3 months! I’m deliberately NOT putting things on hold. But I’m scared. I don’t tell people that. I know “most” lung nodules are benign, but the odds haven’t worked out for me. My MO described them as “not definitively malignant.”
And I could never express that fear and heaviness as eloquently as you. Not wanting to be paranoid. Not wanting to burden others. I get it. Really and truly.
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Cpeachymom & Runor,
I am in that same boat. Always something— is it recurrence or spread? Is it something else?? Don’t want to alarm family over and over. I feel like the little crying wolf.
Developed a cough over the summer. Mentioned it to MO who immediately sent me down for an X-ray,,, heart beats faster cause she reacted so swiftly. X-ray clear. Exhale.
Back acts up. I think it’s sciatica. Referred pain to my right knee. Can’t sleep at night because the pain won’t go away. See PCP who immediately orders X-rays Deep breaths again, heart racing. PCP calls to say nothing out of ordinary (where ordinary includes stenosis and arthritis of my back) with directions to return for Ortho followup if not better in a few days. Well, knee still hurts but I am sleeping again, so I am better
Headache after working on taxes. Is it just a headache or skull mets
Runor, I feel your pain as described everyday. You are not alone
Cpeachymom, hoping your X-ray is clear in 3 months.
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Seachain, life is like a fist to the face sometimes, isn't it? I am sorry for these unending blows that just keep coming. Mara, same for you, a hard blow.
CPeachy and DodgersGirl ... (my hands flew up into the air above the keyboard and hovered because the words to convey this new and unique misery are not there). This house is empty when Hub is at work. I talk to myself. I am not the best person for me to talk to about this. One me says, do you think this chronic cough is lung cancer? The other me says, hell, yes I do! First me says, what should we do about it? The next me says, let's freak the fuck out ! Now, I could phone a friend and howl, but really, they can only deal with so much. So I huddle alone here and type my agonizing anxiety out into the world in an anonymous way so people aren't burdened by me, because they don't really know me and don't really need to concern themselves with me. I mean yes, we are all concerned with each other in that we are all in the same boat and hanging on for dear life and thus we IDENTIFY with each other. That is the real value here, the ability to speak our truths, a truth that the Rest Of The World can't really grasp. I remember the day I felt a glass dome fall over me, a thick wall that separated me from the rest of the people. It left me inside that dome, where I could see out and they could see in but we lived in different environments. Theirs: life just goes on like it did before. Mine: Life will never go on like it did before even though to those outside looking in it all looks the same. It is not.
Even now. If this many months of coughing turns out to be an allergy or something, I will feel stupid that I said anything. Like having played the cancer card once, I must step aside with all other issues because I've had my time in the spotlight. Why would I feel that way? I don't know, but I do. It is a very isolating feeling. I hate all of this so much I could puke.
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I know the scary feeling. I was having postmenopausal spotting and was so afraid it was cancer. My husband recently, suddenly, died and I felt like I had no one to talk to. I called my sister and told her, but immediately said it is probably nothing and I am ok. I did go to the doctors and I have non cancerous polyps in my uterus and they are scraping my uterus tomorrow. (d&c) I go and wait for the horrible news and feel relieved that it is not cancer. I feel like I could use a break in life for a bit. I am sure there are a lot of people who feel that way.
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Mistyeyes, so sorry about your husband and now dealing with grief and this new worry together. I am forever amazed at how people carry on even when we don't want to.
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Mistyeyes— so sorry for the loss of your hubby. Big hugs to you
Like Runor said, it is amazing how much we are dealt with each day and keep moving forward.
May you get nothing but good news from your D&C.
Cancer sucks
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misty eyes- I’m very sorry for the loss of your husband. I hope your d & c is trouble free.
So there it is- the fear and worry we all share.
Dodgers- I’m glad you’re tests have been not cancer. Glad docs are taking us seriously and checking things out. I miss just being healthy.
I had to take my son with me grocery shopping today, because my chest, arm, and shoulder are so messed up from this effing tissue expander that I can’t even carry a gallon of milk with that side. A few years ago I could lift over 100 lbs. I mentioned to him that it must be weird for him. He said, “Yeah, you used to be like Superwoman physically. Now it’s just mentally. You have to put up with all this.”
Runor and Dodgers- May we all have allergies.
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cpeachymom—. I think I am allergic to doctors and medical stuff
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Mistyeyes, so sorry to hear about your husband. My thoughts go out to you, your family and all who loved him.
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Mistyeyes, so sorry about your husband. I can only imagine how alone you feel.
Cpeachymom, if it's any help, I've been having two spots on my bones that they have been monitoring for about 7 years now. Under 1 cm and unchanged. Had several spot in my lung coming and going on a regular basis. Same thing, too small to biopsy, imaging every 6 months now, sometimes they're still there unchanged, sometimes they're gone and new ones have sprouted.
On the other hand, about 6 years ago, I complained about cough and shortness of brath and nagged my drs until I got full imaging and pulmonary function test done. They found out that I had pulmonary apical fibrosis from.... Cytoxan. Actually the dr in the pulmonary test lab said she sees that all the time after chemo with Taxotere/Cytoxan. Funny part is that it's also used to treat certain forms of... pulmonary fibrosis. Mind boggling.
Honestly, I personally am so tired of this that I got to the point of almost not caring anymore.
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Thanks seachain, That does give me hope. I also hope mine disappear. I know I have scarring from rads, that’s unchanged.
I’d like to not care, to not worry, but I’ve got a two year old. I have to care!
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mistyeyes - I'm so sorry you just lost your husband. I am in The Villages - only about 25 minutes from Homosassa. Want to get together? Send me a PM.
Hugs,
An
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mistyeyes - I'm so sorry you just lost your husband. Sounds like you are having a rough time with medical issues, too. I am in The Villages - only about 25 minutes from Homosassa. Want to get together? Send me a PM.
Hugs,
An
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Runor- You say what I feel !!! And so eloquently. Yes- the glass dome. I too wonder if each ache and pain is the cancer. I too feel "Am I crying wolf". I too feel that my family and friends, ( and even my MO office ), thinks I am paranoid. I too feel alone.
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Husband. Loss. Omg I’m so deeply deeply sorry my god almighty. Enough of this hell we are forced to live in here. Give us a fu**ing break here PLEASE!!!!
I have no words and my heart is guttted for you. I wish you strength, peace, and just being able to get through each and everyday. I am so truly sorry.
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All of these posts are the reason I come here to check in and compare notes. You guys caregivers and patients are amazing. I’m resigned to be on this emotional and physical roller coaster forever. That’s what a BC DX brings or the C word for that matter.
I didn’t have a cough but I did have shoulder pain a few years ago that I thought was due to constantly picking up my twin grandsons. I had it checked out and the PA had chest X-rays done. I have allergies and she thought it might be pneumonia. That test was negative. The tech was a moron. She kept asking me if I had an underwire bra on and had to do the xrays several times. I didn’t have one on.
Anyway the Xray showed lots of lung nodules. I did have radiation in 2011- 33 treatments. The PA freaked out and said I needed to go to the Cancer Clinic where I was treated like ASAP. She said it could be scarring or an infection. I said I would wait for the radiologist’s report. She said he would agree with her. He didn’t. The report came back the next day the Xray was normal. No evidence of serious lung issues. I was afraid to be sure. I don’t think that fear factor will ever change.
I really don’t care whether people think I’m paranoid or not. Walk a mile in my shoes or for that matter - ours.
I am so sorry for all the personal losses. It’s so painful to see loved ones suffer much less pass away. Unfortunately have had that experience a few times too.
You never know when you are going to lose someone close to you so I totally agree mend fences before it’s too late after all you are family. We have a brother who has disowned the rest of us and all of our efforts to reach out to him have been rejected. He pretty much shut the door in our faces. It’s really sad. My parents are no longer living. They would be so devastated by this,
Keep the faith ladies you are all some kind of strong women.
Diane
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mistyeyes, so sad about your DH. I hope the d&c goes ok. Should be over by now?
Now my rant. I woke up at 3:30 AM. I couldn't go back to sleep thinking about next treatment, etc. It happens. I usually survive ok. I fell back to sleep around 6 which is common and had the most horrendous dream. I was in some really crowded medical facility (where else?) and they kept moving me from one room to another, each equally full of people. I never got seen or treated and they made me leave after about room number five. The only transportation in the parking lot was a huge dilapidated BUS. They made me drive it away. It kept breaking down. Then DH started making noise (6:30 or so. I mean, he has things to do like WALKING THE DOG) and woke me up. I jumped out of bed to get away from the dream. I started my beginning the day activities, get dressed and put on compression sleeve. While putting it on, I stabbed myself in the arm (I usually only punch myself in the face) and it bleeds all over the sleeve and my arm. So now I have to wash the sleeve and quickly so the blood doesn't stain. That done, I decide to skip the sleeve (first time in three years) and now am trying to recover. BTW, when I stabbed myself, with a fingernail I guess, I was wearing a RUBBER GLOVE. I always wear one so as not to STAB myself or the sleeve. This day can only get better, right?
Sorry to everyone suffering more traumatic events. I usually don't remember dreams. I better not analyse this one.
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mistyeyes I am so sorry for all you are going through right now. Sometimes life is not fair.
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Jaycee, definitely sounds like a strange dream. Can throw you off for sure. I love it when I wake up hollering at various people and of course cannot remember what it's about. It usually involves someone I am annoyed with. It's weird. I used to scare my mother with all the shouting.
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I've had a few bad weeks waiting for the results to come back but this winter has taken the cake. First it was a mammogram with changes. OK. Did the ultrasound on a Thursday. The Dr's office called at 4:35 of Friday to give me results. Of course I missed the call by 2 seconds and it went to voice mail. Couldn't call back because they had already switched the phone over to weekend mode. Spent all weekend wondering how bad it was. Turned out it was just a new cyst. Fast forward a month and all of a sudden I'm really short of breath. I thought (hoped) it was just a bad asthma attack. Still really bad the next day. Now I'm thinking lung mets. I spent 8 hours in the ER having every test under the sun done. Needed to get a pic line because they couldn't find a vein to get 4 tubes of blood or get an IV started. I'm bruised from my arm pit to the back of my hand. It turns out I've got a deep vein thrombosis and pulmonary embolism. I'm doing better now but they want me to follow up with a new MO (mine left) to see if my BC caused any of this. The midnight panic attacks start again. I'm getting pretty needle phobic and know they'll want more blood drawn and contrasting IV's started. I'm crying just thinking about it. I've got three weeks to wait and think about it. I hate the cycle of planning my life around Dr appointments and waiting for results. I lived through the PE and should be grateful but just really pissed off right now. There is nothing like hauling an oxygen tank around to make you feel like and old, old lady. Thanks for letting me vent.
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Grace, couldn't they have left the pic line in for future blood draws and IV's? That would have been smart of them. Good news on the cyst, though. I'm just starting to hate stage III. It's like the forgotten, neglected, and abandoned stage. If you feel that way, I understand and I'm sorry. If you don't, just ignore me. I give this stuff entirely too much thought. Anyway, you are justified in being pissed off about the other stuff.
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Kingjr, it must be very painful to feel that your sister isn't pursuing every possible avenue to survive as you and your mother have. You logically want to think that lifestyle changes and "catching it early" would have protected your sister or that more aggressive treatment can save her, even now. Those concepts suggest a level of control we simply do not have and rules that cancer often refuses to follow. Echoing what others have said, surgery and chemotherapy may well offer no benefit to someone with Stage IV cancer. If your sister feels her past choices or current lifestyle are being judged and found wanting, it's unlikely that she'll want to involve you in her doctor visits or any frank discussions about her prognosis and your role as caregiver. I hope you'll be able to set those thoughts aside. The suggestion about getting support for yourself is excellent. This is brutal for you, too! Perhaps the American Cancer Society or a similar group can direct you to resources to help you in your caregiver role during this difficult time. I'm sorry that you and your family find yourselves in this tragic situation.
Micmel, your story is a prime example of cancer ignoring any studies or statistics. No one deserves this horrible disease, but when you feel like you've done everything right to ensure a long, healthy life as you did, the Stage IV de novo diagnosis is especially shocking. How unfair that you're dealing with something so scary and watching your father decline at the same time. Do you have any local support from family or friends?
Lyn
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So sad to read of all the hearts here hurting. So sad to never feel the freedom of just waking up and no worries ahead of you.
Snickersmom, I am adjusting with all the new things I have to take care of, but I would love to meet you when I feel a little more together.
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Mistyeyes - How Did your D&C go? Any time you need me for anything - I am right here, 30 minutes away. Anything you need.
Ann
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Snickersmom, Thanks so much. I am ok, it was not as bad as I thought it would be. I am surrounded by family, my mom and sister stay with me for most of the day.
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I know I shouldn't let this bother me, but it does. My Director came in today coughing/hacking and thinks he has bronchitis. I pulled out my mask as I have chemo on Monday. I told him to stay away and he says I'm not contagious. I said yes you are and you can't be around me. What really got me was every time he would walk by he would fake a cough towards me. Finally I said to him this is not funny as I can't afford to get sick and I would be really upset if this delayed chemo. He played it down like it was no big deal. I told him maybe I should bring you to chemo with me to see how serious this is and of course I get the response I've been there when I went through radiation last year. So far everyone that I work with have been wonderful and understanding. There always has to be one person who thinks this is fun and games and it happens to be my Director. He is a great Director, but this is not right in my book.
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