STEAM ROOM FOR ANGER
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Jaycee, I copied- wrote down your message to your mo in my notebook in case if again something like that happen to me, so I use it. I have several experience like that, once I received a call for an urgent visit right after my mri results released, the caller said there is something in your mri your doctor wants to discuss with you in person.. next day I was there with countless stress if the mri confirmed LP disease. When I showed up no one was expecting me! They put me in a small exam room for one hour and a half, until I lost my patience asked loudly at least tell me what is going on... 15 minutes later a nurse came in and said don’t panic your result is stable!!!! Really?!!!!!! turned out the call wasn't from my neuro oncologist and none of other doctors but from a resident with huge ego!! they said it was a mistake but never apologized. Of course they don’t.
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I haven’t been on the boards much because I really felt like I was free and clear, with my five year anniversary approaching in April. My MO I had through most of treatment moved to another city, so I had to get a new one. That was actually a good thing, because my first MO had the bedside manner of Sheldon Cooper. Anyway, when my first MO did bloodwork a year ago, I had a CEA of 7. Normal is between 2 and 3. He did nothing. I saw his replacement six months ago, not a great MO, either, and bloodwork showed CEA of 11. Still no extra tests or discussion. I decided, due to Covid, to find a cancer center closer to home instead of close to work, since I had been working from home ever since the “14 days to stop the spread.” I just met my new MO last week and I love her! Unfortunately, blood drawn showed CEA of 31! She called me as soon as she saw it this past Wednesday the 24th and talked to me about getting a PET scan. The office called Thursday the 25th to schedule me for this upcoming Monday. Guess who called me yesterday (Friday) to say they had to cancel my PET scan because they didn’t receive insurance approval? Grrrrrrrrr!
I called insurance immediately. They said they did receive the request and the doctor did say it was urgent. The holdup is because they send all these requests to a third party to determine eligibility and necessity. You would think the CEA marker trending higher would be enough for approval. So, no PET scan. I am still eating the Keto diet in the hopes I can get one some time next week.Of course I am freaked out because I know of no one who had trending higher CEA numbers who didn’t have recurrence. I’m just wondering where it will show up. Every body twinge now makes my mind go crazy. So I am angry and crazy!
Venting to you all who understand does help. Thanks for being there!
Fairy Godmother, FG for short.
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I have a new diagnosis which means and surgery. I’m not a profane person...generally, but I’m gonna start inventing new words.
I started having double vision about 6 weeks ago. Silly me thought it was SE’s from Letrozole and Ibrance. OD referred me fo PCP to rule out the simple stuff then sent me for CT Scan. She wanted an MRI but the #+$&* Tissue Expanders are compatible with MRI. So first CT Scan showed an aneurysm just above the right Internal Carotid Artery. Ding ding ding...warning bells start ringing and the Neurosurgeon wants an angiogram too. Angiogram verifies the first big aneurysm and shows two more smaller aneurysms on the left side Artery.
I’m Stage IV, had chemo, radiation and tissue expanders that make me look like a fat Arnold Shwarzeneger! Now I’m gonna lose my hair again because of Brain Surgery? At this point I would not be at all surprised if random body parts just started falling off! I mean, I’m beginning to wonder if God isn’t just telling me something! I was sort of just expecting maybe another 5 years to hang around my grand children, but even that’s not looking so good right now!
Anyone have an extra bottle of D a m n I t o l? I think I need some
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Hugs to both of you two!
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Jaycee49, I finally got up the nerve to fire my primary care doctor last year. I think I'd stuck with her due to inertia. But after years of dealing with her rude staff, I finally noticed several shortcomings in her manner and procedures. I found a new doctor who is SO nice, and her staff are all so kind and efficient that it brings tears to my eyes. When I left the first one, I sent her an email detailing all the problems with her and her staff, and telling her she was fired. Her response was to wonder how I got her email address - which she'd given me just a few hours earlier! Boy, what a vindication for my decision. We all need to be more willing to dump the bad docs.
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Ladies,
I hear you on being treated badly by medical staff. However, be glad you have civilian doctors where you have the power to fire them.
I was born in a military hospital and military medicine was all I had ever experienced until I was about 45. They don't have to be nice. Don't like it, pay for civilian care out of your pocket. Don't like the doctor assigned to you, too damn bad. Tired of the long long wait to see medical staff, then feel free to leave. Your medical records are not yours, the government owns them.
I have lots of horror stories of missed diagnoses, rude treatment, tests and procedures done without any numbing or pain relief. The worst was my first lumpectomy where the anesthesia didn't work but the paralyzing drug did work. So I was strapped to the operation table for 2 hours unable to scream. I heard everything. I felt EVERYTHING! I begged God to let me die. No one ever apologized.
When the military invented Tricare I finally got to experience civilian care. It was like day and night. Occasionally I got someone I didn't like. But at least I could fire them. Discovered that things don't have to be so painful. There's this fabulous drug called lidicane that will numb you before the doctor cuts, punches, stitches, etc. What a concept. Keep the patient comfortable.
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Alice it is so hard to change primary docs sometimes I know. It took us years to change ours and we were not even aware how bad he was until DH almost died from his miis-management of his many complex illnesses. After an ER trip where he almost died a doc there recommended the one we have now and said he sends his own family to this practice. They run it well and you never wait when you go in. Very caring doctors and we have been very happy there now. Good luck in your new practice. You have to advocate for good care. Sometimes doctors are too over booked due to corporate stuff going on. Awful for patients!
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I agree that it is extremely hard to change primary care providers. The one I finally ditched last year was simply horrible and not nice on top of being a bad provider. I was finally prompted to switch when I got my breast cancer diagnosis. There was no way I wanted her incompetence and rudeness on top of dealing with cancer. I knew I needed a good competent dr to help me. Luckily I hit the jackpot. The one I have now is the kindest and most compassionate dr, on top of knowing his stuff, yet not cocky and willing to research. While I count myself very fortunate I also want to kick my own butt for not switching sooner.
It just should not be so hard to find decent doctors. I don't get it at all.
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I’ve fired several. I’m not going to deal with drs who don’t treat, respect me, as I feeel I should be. I understand they have private lives, and stuff happens. They are human. But not every visit. And staff better be on point too. Or I’m gone.
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Snowdrop, FGodmother - There is no excuse for how you have been treated. Changing DRs, facilities etc is tempting if you really have a choice and recommendations. Insurance - sometimes I want to burn them down. Why should they need to "approve" if it covered? I like my DR, but told her recently that I feel like I live in a very tiny town (probably getting close to 500,000 for the larger metro area) in a very redneck backward thinking state. Getting a 2nd or third opinion on treatment options and for the lymphedema which is getting out of control would mean a lot of travel to go that route, hard and scary with Covid. DR said cancer is not on the list for at risk with Covid, so I'll probably have t wait until May until age qualifies me.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.
12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs.
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There is so much death around me. Like, who is this Jeopardy guy tonight? One of my friends just lost her Dad. Her Mom is in a home. Just recent. I’m not sure what happened but I sent just a short thinking of you text. It’s not like I can get in the car and just go to their house with something and just listen. No. So tired of doing it this way. Text, phone call, zoom it’s not the same. I hate this!!
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No not the same at all. I'm so sorry. I just had a dear friend lose her mother in the law. We've only been able to wave the porch a few times when she brought us food once. Could not go them and comfort them. Can't go to the funeral even though in town. Only family and distanced.
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I also mailed a card to my friend. Don't know what else to do. They have a place about 1/2 hr. away on same water as the not quite ready beach cottage we have. Hopeful they will be allowed and able to come in to visit by their boat as they did a few times before.
Today is one of those days I'm fighting with myself. I just went and bought a pair of jeans. Mine are getting washed out and I'm not comfortable at all. Every year at this time, it seems to be my worst weight wise. After the holiday rush towards the end of Jan. up through Mar. I tend to have weight gain. Under 10 lbs. but enough to know and feel uncomfortable. You know the feeling-ugh. So, fasting through lunch and need to make better choices and get moving. I like my rower but have been using the "it's too cold down there'" excuse except on the weekends when I'm down there during the daytime, and not in the dark! I will try to get a week in next week until daylight savings time comes the following week and it's dark in the morning again. As much as I love a later sunset, those first few weeks of getting up in the dark have always bothered me. Hubs never understood this about me, neither do I. I could never live up north in the dark. This year, let's see if I can change this. Just focus and do better.
Anyone have a seasonal disorder thing?
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ctmbsikia
I usually get in a bit of a funk after New Year's until the start of spring. With a year of Covid restrictions, I can't tell if it's better, worse, or just different. February was so cold this year in the midwest that it felt like the longest month, so that's part of it. And I miss going out to restaurants occasionally, which was one way to break up the gloom other years. But now the weather's nice and we're back to doing some day trips and even a carry-out picnic planned for tomorrow, so I think my worst is past for now.
I lost a lot of weight leading up to my cancer surgeries in 2018. I kept losing after the lumpectomy, but once my kidney was out (and I stopped smoking) I piled it all back on plus some. I started losing last summer and it keeps dropping, but fairly slowly. I'm not sure whether to be happy or worried, since I haven't been trying. Maybe I'll defer worrying until I can get in the jeans I bought for smaller me 😀.
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We had snow cover the entire month of Feb. although not nearly as rough as you all in the mid west, TX, etc. had. What a mess! An outdoor picnic sounds lovely, enjoy!
I managed to row this morning. Lots of creeking going on-LOL! Will keep at it everyday and surely this funk will disappear in a few weeks. Music always helps my mood as well:
Wake up sleepy head
I think the suns a little brighter today
Smile and watch the icicles melt away and see the water rising...
Summers here to stay, and that sweet summer breeze will blow forever
Go down to the shore, kick off your shoes, dive in the empty ocean.--Dave Matthews Band0 -
ctmbsikia, don’t feel too awful for Texas. It really sucked while it lasted, but you probably haven’t heard that after the “cold snap” ended, following a few sub-zero morning it was back to eighty degrees five days later.
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ctmbsikia we had been going on walks twice a day at least a mile. It is up hill and downhill where we live so it s a big workout for us too. With the icky weather we've had it had months since we could go outside and walk ourselves. Tried finally the other day when we managed to hit a whopping 50 here for a day and thought I would die and not make it home. Next day we just went around 1 block. Better than nothing. Figure better work back into it again slowly.
Know moving is good and good for our bones and our brain.
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cancer has messed with my perception of things.
I woke up in the middle of the night Friday/Saturday with intense pain in my left arm. (The side of recent mx).
Can’t sleep, because laying down hurts. (No, I don’t have a recliner) BP has been high especially Saturday and Sunday.
Radiology RN on Monday suggested Benadryl to help me sleep. Been taking Advil and Tylenol since Saturday am. Pain has been nearly constant, but varies in presentation. Except if I’m laying down.
PT on weds. They think impinged nerve is impacting brachial plexus. I told pcp, MO, and RO (as PT requested) same day.
Yesterday morning got a call from MRI unit letting me know they had an order of a cervical and thoracic MRI and they had a spot openlast night. MO ordered it.
All day yesterday I was marveling at how wonderfully caring MO was. (Only 1 of the 4 who thought I should have further testing).
This morning I’m wondering if she’s worried not about a nerve impingement, but a possible tumor. Which would mean ... Met?
when the hell did I become this paranoid? When will things be taken at face value again?With a late Thursday night MRI I suspect I won’t know results till Monday... so... the waiting should be fun.
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I personally would suggest trying some melatonin myself. It was recommended to me and is safe to use. I can usually drift off within an hour and stay asleep most of the night and helps me turn off the brain and get some rest. I use the gummy kind and it is strawberry flavored since I prefer to pills but I know it comes in both forms. Best wishes! HUGS!
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I’m tired enough to sleep but can’t because of the pain. There is no way to lie down.
Results of both scans are in MyChart. I’ve read them. I *think* I understand them. There is some stenosis in the range of vertebrae that the PT has suggested. Some degenerative changes. No tumor!
Waiting for call to help translate medical into understandable. Glad for results. Sad my brain now includes cancer as an option causing every thing.
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NotAsCalm, I'm glad your results appear to be good. I looked back at your profile and you're still what I'd call "new" in your diagnosis and treatment. I really think that in the beginning and for a long time, cancer consumes our thoughts. "My pinkie hurts. Could it be cancer???" Gradually (but I have no idea how long), those fears start to subside and hopefully there will be a day when you'll be partway through your day and you will realize that you didn't wake up thinking about cancer that day. That, my friend, is a wonderful day.
I'm so glad you have a good medical team, and that your MO ordered the scans. Mine, too, is proactive and listens to my concerns and fears. I'm also glad you have your results sooner rather than later. Having to wait over a weekend would be really hard. Believe me, I'm checking my patient portal OFTEN after my scans, blood work, etc.
Have a peaceful weekend.
Carol
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My dominant arm had been bothering me for months. Was hard to raise my hand to brush teeth. Then started to wake me at night, and going numb. I’ve had four level cervical fusion, but your mind can go to a lot of dark places. Cancer included. Wound up at an orthopedic dr. A shot of cortisone really helped, he wants an MRI, probably a partial rotator cuff tear. And a surgery. 4 weeks in a sling. No can do, guess I’ll wait.
Point is, may be something like this. Our minds do go dark places, pain is a sign SOMETHING is wrong, but it’s not always cancer. Good you’re getting checked out, keep us posted.
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Notascalm, glad this has nothing to do with cancer! Wishing you relief soon.
This has been a tough week for me. Doing taxes last weekend is when it started. By yesterday, I thought my head would explode. It took every morsel in my body to get dressed and get to work today. My one ear is ringing on and off and have had headaches almost daily and just feel pressure. When the tears comes, it is like a relief valve going off, and I feel better. After arriving at work (crying in the car on the way), I realized I forgot my phone. So, I left again to go fetch it and then called my primary. Now, there's a script waiting for me at the pharmacy. Fluoxetine 10mg. I gave in, I need help. I don't want to feel like this, so we shall see. I don't think it is sinus or an ear infection since I've never felt like this. I've never taken a drug of this type before, and I'm hoping it's only a temporary thing. Now, I have ANOTHER appt. to go to in a month because of this.
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ctmbsikia, good for you for trying something new. I hope the meds kick in fast though it can take 4+ weeks...but when it works it can be like magic.
Oh & taxes just plain suck. I hope the headache goes away . Could it be sinusitis or seasonal allergy? Hugs
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Spookiesmom
My right arm has been like that, too. I attribute it to a combination of getting it jerked around during too many surgeries, radiation positioning, and the second pneumonia shot I got shortly before starting radiation, all in 2018. It's been getting progressively worse, except I haven't lost any range of motion. But it wakes me up at night, and I've lost most of the feeling in half my hand. One thing that has helped with the pain part is Biofreeze. I mean, it was really fast relief as soon as I applied it. I'm getting my Covid shot in a week and I'm kind of dreading it irritating that shoulder/arm even more.
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Agree Biofreeze is great stuff!! I even use it on mosquito bites😂😂. Broke my thumb last year, didn't know it was broken (long story) Biofreeze worked pretty good on that too. Thought it was trigger thumb.
I got the Phizer shot in the other arm this past Monday just for that reason. Felt like a flu shot for a day or so, no biggie. No other se.
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Long ago, right after finishing treatment, I accidentally pulled the hatchback door of my Prius down hard onto the top of my head. It made a big, painful goose egg up there. I said to my husband, "honey, feel this. Do you think it's cancer?"
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Need a place to vent!
I'm being ghosted by old friends around the country who have been frequently group texting since Covid started. They all know I have MBC and had a rough time with initial 2 treatments over a year ago. One spouse has a new diagnosis of cancer in lymph system. She was frustrated that onc did scans after 3 of 6 tx, but didn't set immediate appt to discuss. I acknowlodged that scanxiety is tough and said it was probably a benchmark and planned tx would continue, then scan again and have good idea of results from initial tx. Silence resulted. I don't have interest in conversations that are just 😊 or😥 or🙏. Praying for "complete recovery" and immediate CT results (I want the RO to thoughtfully consider my scans) are just nonsense and insulting. Someone asked how everyone felt after 2nd vaccine. I responded, then another 2 responded. Responses specifically congratulated others. No acknowledgement that the person w/MBC is glad to be vaccinated. Many of these folks have travelled, seen family, eaten at restaurants, etc this year. One day I was particularily sad about things I perceive to have missed this past year (knowing my mets are slowly growing) so I wrote that I have developed a dread of leaving the house as it has become my safe place and I never have to comb my hair. I know it sounds pathetic, but it was that kind of day. The thread has been silent for a week. I'm going to TRY to limit my responses to smiley faces about cute pics of spitting up grandchildren.
Thanks for giving me a place to say this. I don't want to go into it with face-to-face friends as they have been nothing but kind & thoughful. So now I'm spitting in that trash can and forgetting this problem.
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nopink - I'm sorry to hear about your so-called friends. Anyone who has been through a rough patch soon finds out who their real friends are. Most folks are just like "here are some empty platitudes, now go back to being happy" and if you don't they don't want to deal with you anymore. Others may just not know what to say. Anyway, congrats on your vaccine and hopefully you (and all of us) can get back to normal pre-COVID life sooner rather than later. BTW I recommend combing your hair and getting dressed regardless of whether you plan to leave the house, it just seems to help with mental health.
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Most people don't want to talk to anyone who seems to know what they are talking about. Makes them feel inadequate.
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