STEAM ROOM FOR ANGER
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love and hugs to everyone on here... I don't post often but read a lot!
- I just have to let go .....so my Tagline shows I had bc dx in 2015. .... Chemo AC and T DMX and then AIs .... Had both ductal and lobular invasive and ductal and lobular in situ .... This after having regular mammograms from the age of 45 .... Difficult 2016 swapped AI's because of crippling side effects ... I remained positive like we all try to be....with the odd day of scan anxiety ... reconstruction went sorta ok ..then 2017....Feb muliple PE's both lungs ..rescanned for possible Lung mets ..no mets but oh a nodule to watch and rescan inthree months.... 5 weeks in hospitals ..rehab for breathing and conditioning..late April scan..lung nodule the same but .?something on r kidney .4more scans later urology surgeon not positive if benign or cancerous..I insisted on partial nephrectomy to be sure (after lots of research). Pathology comes back clear cell renal cell carcinoma.Thats July..August my primary care phsician calls me in for blood tests...results Type II Diabetes...result of ? Weight gain ,lack of exercise as have leg joints of 100year old ( thanks exemestane) cccchorrendous hip pain... Dx with central canal stenosis from accelerated bone degeneration ( thanks exemestane) spine L1-3 prolapsed discs ,collapsed degenerative facet joints....need spinal fusion.
- Due pain relief spinal inj this week..been in hospital since last friday...admitted with chest pain..diagnosed with atrial fibrillation...and heart failure with fluid on both lungs...emergency cardiac echo tomorrow morning ..now on cardiac drugs, water tablets, tablets for side effects of tablets, ,chemo induced peripheral neuropathy both feet and right hand...treating Drs said heart and lung problems relate to red devil chemo... I feel like Arnie at the end of I think terminator 1 ...I move forward, crawling at times with body parts falling off but I still keep moving forward.cancer will not take me down without a fight.. Want to scream but instead to protect my loved ones who over worry about everything I will smile and say I'm fine.. Here I can let go because you understand and admit .....it terrifies me... EVery thing that is wrong with my body right now is from the treatment not the cancer..Pink October Find A Cure!
I will keep fighting of course ,,,respect to you ladies .all power to you !
Judi
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Yoxter- Judi - I read your post and my first thought was 'she needs a hug' - You have definitely been going through hell, cancer and its treatments are a rough, heavy load to carry, and it sounds as if anything that can backfire - did. I do know what it is like to protect family and just say I'm fine, but I also feel that by being positive for them, I feel a little more positive than I would have if I could tell them every thought. That's why this board is so great, we can share our fears, anger, and heartbreak with each other to release it from deep inside us. Please keep posting and you are in my thoughts. I agree - Pink October ...find a cure!!!!
Keep the good fight and power right back at ya!
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Judi - Glad you shared all that. It is a trip through the reality of cancer "therapy" and it sucks. Everytime I think I will jump off the therapy wheel I get sucked back in. Recurrence worse than the last one or something. You do need a hug.
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Jaycee, thanks for posting the article. I only wish it included the comment my coworker said to me in the staff mtg. Then I would print it and put it on her desk. Maybe I should print it anyhow and hand write on the bottom, "Don't tell someone that a cancer diagnosis is a positive thing and that anything is "all in my head." Even though I try to be positive about living to an old age, I am fully aware that may not happen, and it takes every ounce of my being to stay positive, and I don't need you negating my struggle. I wish I could say that to her face. Instead I was passive aggressive and placed a copy of our "dignity and respect" poster on her desk. It said, "Think before you speak. Is it kind? Is it helpful?" etc. I hope she knows it was from me.
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disgusted, appalled, shocked.
Let me begin by saying I shouldn't judge, but hell, i had to witness this nightmare first hand as i was sitting beside her for my infusion.
She's someone's elderly mother. Son said she had a stroke, and she also has bad night terrors that are exacerbated by sleep meds. She hurt her arms by flailing them around during terrors. Shes very frail, needs help transferring From chair to seat, etc. She cant talk. Ok, so THREE nurses tried to get her iv going 3 times.
They could not.
So son says lets wait, get her water, more hot packs, etc. They try again 20 min later. Still unsucceesful. SHE IS CRYING PITEOUSLY. At this point, its time for me to leave cuz im done with my drip
I was shocked. Why are they putting this old woman who cant talk anymore thru this? Is the son keeping her alive for her or for HIMSELF?
Thank God that won't be me.
I just don't get it. Sometimes enuf is enuf. Ive seen them in the chemo clinic couple ttimes b4.
Appalled
L
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Lita - I don't think I could have handled it.
This reminded me of what I found out my aunt did to my grandmother. Grandma was 97 and had cancer after a life of pure food, no alcohol, no makeup, you get the picture. She was sent from hospital to nursing home. She did not know of a living will or DNR and she did not have one. She prayed all day, "Oh Father come, Father come, Father come for me," because she was in such pain and her faith was strong. After being there a few months, each time she died my aunt freaked out and had them resuscitate her. Three times. And she would live a few more days and it happened again and again. So three times total. Then she did die but I am supposing the staff did not let on it had happened until it was too late, the only humane thing to do. But then I wonder what palliative care had been arranged. I was 24 when she died, naive and quiet on the outside. My mother was MIA during all this due to alcoholism. Another aunt lived far away and the other two were passive to the aunt who took control. No one, not even my sister, told ME until after the aunt died because they basically knew I would have had dear auntie by the throat at least verbally.
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Bluebird....this happens ALL TOO OFTEN.
That's why we need to have Advanced Directives, Living Wills, DNR's, POLST's, etc. FIRMLY IN PLACE.
My Palliative care doc made sure ALL my stuff is on file at Kaiser Permanente. He also said to have a copy of my POLST (physician's orders for life-sustaining Tx) ON MY PERSON at all times in case I get into an accident. Have one by my bedside and one TAPED to the refrigerator. The EMTs are trained to look for these legal docs in those places.
My POLST says "comfort measures ONLY," do no resuscitate me if I have a heart attack. Also, if I stroke out, NO FOOD TUBES and NO HYDRATION. Just LET ME GO.
It looks like me kidneys are acting up b/c of Tx. We're going to have to keep an eye on those. Right now, MO just has me hydrating a bit and testing more. I've already decided that if they stop working, it's a sign from the Almighty to just let go. I WILL NOT go on dialysis or any other crap. Once your kidneys stop working, you can "transition" within a couple of weeks or so. That happened to my matron of honor. She was on dialysis for years, and when she had to go to every other day (3 X one week, 4 X next week), she decided that's was enuf, and she called us all together and said she was going off dialysis. This was years ago, right before Thanksgiving, She died about 2 wks later around my birthday. The kidneys and liver are major organs, and when they finally shut down, it doesn't take too long for your body to fill with toxins. The trick is to keep you comfortable and not hallucinating because the toxins can build up in the brain tissues and also wreak havoc.
Palliative care doc says he'll make sure I have proper sedation, so I'm not too worried. Kidneys failing coupled with VSED (Voluntary Stopping of Eating and Drinking), and I should transition hopefully in less than a week, Lord willing.
L
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Judi - My knees were already bad - before Arimidex!!! OMG - if I live long enough - I'm sure I will need knee REPLACEMENT. I still pound them into the ground in my U-Jam classes and pound away on the stationary bike. Because ALL my frustration, sadness, anger and fears - have to go somewhere. My Dh doesn't understand what I go through and I don't think wants to listen to me. My DD is only 10 and well - she's 10. No one gets it and I feel like I'm in a world of hurt all by myself, sometimes. People say "oh your so good for working out". But - I only do it - to survive mentally.. I am at my worst inside my head - before I workout. Sometimes it takes everything I've got in me - to plop my fat-ass on the stationary bike. But, once I'm there, it is a relief. And, my ass - is f*cking FAT - too. I have gained at least 30 pounds over the past year or so. I NEVER had a weight problem before and I swear I'm not eating ANY more than I ever did. And, I'm so sorry you had to go through all those frightening tests/scans. I hope you had some Ativan for that!!!
Jaycee - That's a great article!!! Thank-you for sharing it!!
Dear Lita - you are in my thoughts...I'm glad you continue to let us know how you are... I wish I could reach through my computer to give you a hug...please know we're all thinking about you...
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I probably have what some would call an "odd" sense of humor since going through transplant with DH and canc
er. This video if no one has seen it is exactly how we feel, both of us at this point! Done by ICU nurses. Seeing Lita's post about what that poor OLD person is going through right now says it all.
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BC in CO - good one.
Lita - I need to get all this done. Advanced Directives, Living Wills, DNR's, POLST's, etc.... not that I am there yet but with the drugs it can cancel us out at any time due to complications. Seriously, too soon in our lives to know we have to figure it all out. But I suppose people do even when healthy and at much younger ages than us.
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thinking of you all. I read every post and my heart bleeds for all of you. Suffering bad chemo brain so wont be able to repond to each post.
My rant. Actully I have 2 rants I need to get off my chest. So hmm I actully like facebook We are military family so I have family and friends all over Canada facebook makes it so easy to keep everyone in the loop. But i found that people just read my posts and accept that is whats going on lol. Hardly.. Anyway im butt hurt that no one has been checking in... So i stopped posting and bang with in days i was getting calls. Havent seen you on FB thought i check in. Haha too funny. But saying that people they havent checked in cause they dont wanna wake you... Wtf people you think we sleep all day? Omg i would love to sleep through all this crap. And i always knew when health crisis hits the real friends come out. Just surprised how fast that happens.
Rant 2. This one hurts.. My MIL from day one of the DX cries when she sees me. She really truly having hard time with it. I find that we have to comfort her. Saying that she has even omitted that shes advoiding me because she dosnt want to upset me. And the excuses she says blows my mind. She will private message me on facebook or call my husband at work but wont call me. She is fantastic tho she comes and cleans my house since surgery she makes meals and brings them over chemo week. But yeah the advoidance is starting to get to me. Please dont take wrong way my MIL lives close and we are close. But yeah i even spoke to her about it... But grrrr get over yourself lady. This is my fight man up. Ughhh
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So true you find out who your true friends are and can trust with the truth. Looks like you are still in the midst of the first part of this battle. You can rant here as much as you want with no judgment.
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MrsWinmie it is amazing how people read on FB and think everything is just hunky dorey but don’t post and all of a sudden it’s “oh I missed you wanted to check in”. I love my FB. My friends and family are scattered all over the USA and abroad. So it’s nice to stay in contact. But it’s certainly not the same as having people call or come by. And yeah, I so wish I was sleeping as much as people seem to think I am! I wish! That is, I think, my favorite excuse for why I haven’t seen some/many of my friends. “I didn’t want to bother you and wake you up” For cryin out loud, WAKE ME UP! It does so much more good to know people care than to think they don’t because nobody comes by
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I keep hearing the new PSA for Stand Up to Cancer with Martin Short, et al.
Three lines in the jingle stand out to me:
"go and get screened for the cancers that might affect you" What?!?!?
"it only takes a minute to take care of your health" Really? I beg to differ.
"nothing rhymes with org" How about morgue?
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House to myself for a few hours while Hubby went for a short list of groceries and fuel in Denali. So quiet. I am used to babysitters hahaha. Want to go in kitchen and make a cheese sauce for chicken and rice but I know better, fall risk and all that. Want to brush the dog but no, not when alone, coughing seizures. Want to get out the holiday tree and start arranging branches. We had to give up real one with my cough, so new one, but no, too much arm movement and cough ensues. Want to take a shower, get movie ready for tonight, clear some tables, even go outside and sit quietly in autumn dusk (no, cold makes me cough and never stop). So here I sit. Reading. Glad to have all of you so close it is like there is a friend to talk to.
Yes, Janet, I looked it up and there are only 8 words that rhyme w org and that is one. Could have done a lot with that rhyming pair.
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"Resistance is futile," according to the Borg.....
There's another word that rhymes with org.
Bluebird...I can't do much of anything without babysitters either. Brain mets are growing again, and now I get really dizzy and lightheaded like I did a couple months ago. Headaches back, too.
Take care,
L
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Praying for your comfort Lita.
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Went to bed before midnight, up at 8:30. But the cough spasms (not a reflex) kept rolling from pressure on lungs in all positions. Now I will be tired for my day w bro and sis. Playing games helps some, numbs the mind in a different way. Going to try sleep again.
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I’m in shock. Saw a friend at the beginning of the week. Mid week she came down with the flu. They admitted her Friday and Saturday morning she died. How is this possible. She was in the hospital and they couldn’t save her. I’m so sad 😞. She was a sweet lady.
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Sorry Dinarose. Getting my shot in 2 weeks. My doc pushes me since DH is immune suppressed from transplant. Any bad cold puts in into renal failure or DKA and in the hospital for weeks.
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Thought we could all use some humor to start our week lol.0 -
Dianarose - I'm so sorry about your friend...it's always so devastating when things like this happen... I love your comic - though!!! That is *me* several times a day!!!
Bluebird - I'm sorry you had a rough night!!! I hope you were able to get some more sleep!!!
Lita - always always thinking of you..
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Dinarose thanks for a laugh this morning! Started that way this morning and DH thought I was crazy going outside in the cold without a coat on but had to cool down! so true but so funny!!!
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Some good humour, love it.
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Diana~ too funny!! We all know what that is like! I showed my DH and he laughed. I showed him this one and he cringed!!!!!!! If only they knew what we go through!
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So DH got his biopsy results over the phone today. He does have prostate cancer. His appointment to discuss it is 12/18. Really!!! Not working for us! He will be calling tomorrow and getting in sooner or we will go elsewhere!
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I’m sorry that he got those results. Can you helieve 12/18? I know it is supposedly slow growing but gee whiz.
Maybe the hospital will name a wing for you two.
I know you are upset and anxious about it. More to worry about. One good thing (if there is any)! Is that you have learned your way around the medical system and understand the medical lingo.
Please give your husband my regards. So very sirry
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Diana...sorry to hear abut your DH's diagnosis. Hope he gets Tx soon. Dec 18...gees!
L
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Diana~ wrapping you in warm hugs my friend. Just take a deep breath, organize your blood work, and board that ship to your islands. Enjoy every beautiful second together. Relax And enjoy everything and anything you can. Don't think about it now, if you can at all. Return three weeks later and the fighters will just keep on fighting, because that's what you both are. fighters! Much much love ~M~
Lita~ been thinking of you. Sending my love! ~M~
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Oh Diana I'm sorry to hear about you husband. And phooey to the hospital for coming up with such a ridiculous appt date
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