STEAM ROOM FOR ANGER
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Medical students often develop signs and symptoms of whatever disease they are studying. Maybe as doctors they assume that is true for their patients? I prefer knowing what to expect...
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JRNJ - more than once I had my MO's NP look at me like I had two heads when I mentioned certain side effects. Then I'd come here and find out that it was common for the chemo that I was on. In fact, there were other women in my chemo month thread having the same problems, yet somehow my cancer clinic had never heard of such a thing. I highly highly highly prefer to see my MO over his NPs because he doesn't dismiss side effects and when I mention SEs from AI, he always asks if I feel like they're bad enough to treat (so far I've always said no but man these hot flashes are really getting annoying). When I was in rads there was a woman with a sore throat from treatment and her RO told her she must have had a cold the whole six weeks.
edj - I'm glad you're getting the scans you need.
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When I went to the ER with hand/foot syndrome caused by taxotere, I told the ER doc that's what I had. He laughed at me and said I was making up disorders. I told him to go to his medical books and then come back and we could talk. What arrogance! And yes, I found out about hand/foot from this platform.
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Good answer, Kamboka. And Edj3, I love your answers: "so do you believe I'm lying, is that where we are?" And "yes but the chance of that happening is a number greater than zero, even if you personally haven't seen it before."
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Edj, tethering, I'm going to have to look into this because as I have said before my boob started hurting mid 2016 and it wasn't until early this year, 2020, that I realized one night as I got into bed, that I wasn't in pain. It had been unending pain for years. Before the surgery and after. This whole idea that breast cancer doesn't hurt is pure hog shit. Sometimes it doesn't. And sometimes, oh yes it does! And what is it with docs who tell you you're wrong about what is happening to you? I have no answers. But I sure appreciate stories of women who don't bow to the white coat but instead say, listen up Buster because if you don't hear me, I can crank up the volume! Sheesh.
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Yep. My RO told me what she'd expect to see (a sort of indentation running at a slant, which is what I've had since oh . . . right, last year). In my case, my left breast has this from the bottom right corner up and across into the left upper corner and into my arm pit.
She said I should keep doing what I'm doing (weighs, all kinds of weights for my arms, chest, back) and stretches and massage and hot showers. Check, check, check and check. Still hurts but you know what? When it feels like I'm ripping my breast right out of my breast bone, I can ease it up because I control the weights. That makes all the difference in the world.
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Edj, AH! That ripping sensation! While I never had the visible dent that you describe, because my boobs are the size of a microwave oven and I think the dent is hidden somewhere in the droop, I remember CLEARLY and vividly the day I did some minor, boring back stretch and screamed out loud in pain for the tearing, ripping sensation in my chest! Holy shitballs!
I had done all the exercises for lymphedema that I had seen in all the videos and while it did slowly improve mobility, I still was having LE problems that were not resolving. Then one day, because my back was hurting, I laid down on the floor, flung my arms out to the sides crucifix style, bent my knees and flopped them over to one side, intending to stretch out my lower back as I have done for years and OHMYFRICKINGOD!!! The pain in my chest was white lightning blinding. I swear I heard the sound of banjo strings breaking, poing, poing, poing. I rolled around clutching myself and cried for a while. And then...a few days later the LE just sort of fizzled away (mostly). This is my go-to move now when I feel constricted and swelly. It still hurts. It's still like things bind up. But NO exercise, NO upright stretch that I ever did had the same excruciating effect as laying on my back and flopping my legs away from the surgery side. I think I had that tethering that you said. Like some sort of constricting scar tissue and it had to be torn free. Which I did. By accident.
However, even after that my boob continued to hurt every day and every night. That stretch helped the LE but not the pain exactly. It wasn't until this year that it finally quit. (It still hurts if I jab it hard). I wonder if it's just a time thing? You only had your surgery a year ago (if I"m reading that right?). I think you're on the right track, keep things from getting bunged up. But it might just take time. I wonder if docs even know the complications and consequences of these surgeries? Maybe the ywant to believe they are doing good (which htey are) and can't tolerate the thought that they send us away with a second set of problems (which often happens). Doctors In Denial?
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Yeah that spinal stretch is a good one, isn't it? I do snow angels too, lying on a foam roller with it going length wise under my spine. Helps with that mobility but holy hell it can hurt. And I have to do those stretches every single day or I lose all the mobility again.
In my case, I know from a previous surgery that I make a lot of scar tissue. I've had 7 major abdominal surgeries and the 7th was to repair an incisional hernia from the previous 6. The surgeon said it would be three holes laprascopically and take about 30 minutes to get in, repair, put in the mesh and get out.
It took 90 minutes and I had five holes, not three--he found so much scar tissue and cleaned it all out, top to bottom and side to side. Man that one hurt to recover from since so much got sliced & diced inside me.
I think that's why I have this tethering and cording. Wish I could sell my scar tissue, might be able to fund my retirement account more fully.
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As someone who also had unbelievable Fatigue/Exhaustion and lack of energy during rads, I want to pass on what an amazing, near miraculous effect Thorne Co Q 10 had for me.
Also known as Ubiquinone, CoQ10 is a super antioxidant that energizes the Mitochondria of our cells. There are multiple mitochondria in each cell in your body, with high activity cells lIike Cardiac Cells having the most. Mitochondria are the power houses of all of our cells. We have less CoQ10 available as a normal part of aging, and especially after cancer treatment.
CoQ10 deficiency is found with most types of cancer. Worsened by Statins
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Role of Coenzyme Q10 in Breast Cancer
Beniluz Aponte, Carlos Davila J, Janibeth Hernandez, Zuleyka Rivera, Winel Segarra A
Nova Southeastern University, USA
Correspondence: Beniluz Aponte, College of Pharmacy, Nova Southeastern University, Puerto Rico, USA, Tel 7873843503
Received: January 30, 2015 | Published: December 21, 2015
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An Oldie but Goody
Partial and Complete Regression of Breast Cancer in Patients in Relation to Dosage of Coenzyme Q10
K Lockwood et al. Biochem Biophys Res Commun. 1994.
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FUTURE ONCOLOGY.
VOL. 13, NO. Bc11Coenzyme Q10 in breast cancer care
Published Online:8 May 2017
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interesting, I knew of its depletion from statins. Worth a try
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I heard a TV Doc promote CoQ10 once. mac one of those links wants $60. to read an article. What a joke!. LOL The other ones worked ok for me. Has anyone here ever been found to have a low level via a blood test? I would try it if I was found to be low-but good luck getting your doc to order that lab work. Always interesting stuff here, nonetheless. I am certain I had BC before I was taking a statin.
My brother the electrician came down to the beach cottage and we wired the place in one long day. He's amazing and happily my son and his gf did show up so he helped us finish up. We got home @ 8:45pm. Needless to say, I was sore yesterday from drilling, pulling, climbing up and down ladders. It was sooooo hot in there despite the fans. I jumped in the water 3 times. I am taking my sister in-law down this week (I took a vacation day) armed with our shop vacs, and we can also do some spray foam insulation around the perimeter. My daughter may come home this week and she can come too. Shouldn't take that long so maybe can enjoy lunch on the beach.
Tending this garden is hard. I was already wiped out when I went out there yesterday morning and by the time I got done weeding and mowing, I was once again soaking wet with sweat. I showered and spent the rest of the day in AC watching Netflix. I was feeling pretty lonely at that point, so I drank some wine and went to bed. Then, dreamt I am lost and no one is helping me or giving me the correct directions in my dream to get where I'm going. Whatever anyone in the dream told me just trapped me into another place I can't get out of--that sort of describes what my dream was, rather than just being plain lost. I couldn't get out. Anxious much? Oh boy. Surely once I have dealt with the owners of the property this cottage is on getting my plumbing and electricity working, it will help. I feel like a mad woman wanting to get this done. Don't think for a minute I won't use the distraught widow card to get them moving on it!!! I also have to deal with family and that's not resolved yet either. Hubs put up 2 cottages, owner adamant about only giving me 1 year free lease for the work he did not 2, so I'm left having to ask next door to reimburse him something for putting up their 4 walls and a roof. So far, not getting good vibes, but I put it out there, he should get paid something back, or the owner needs to give me another year. To be continued...……………..
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A friend in her 90's is very hearing impaired (she's deaf). She supplements her communication ability with LIP READING. She has been living independently for years. Now she is having to move in with one of her kids. Because of MASKS. I'm for wearing masks but I had never thought of this glitch. There are probably many others. I'm sad. She is moving away from me. I may never see her again.
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Jaycee, that is sad about your friend. My Hub is also very deaf. He finds that a plexiglass shield and a mask make it impossible for him to hear anything being said. It must be exhausting for the mask/glass people too, shouting all day. It takes a lot of energy to repeat things two or three times. There are a lot of elderly people in our small town and they all are deaf. It's super Canadian to be in a sotre and hear people shouting "EH?" as they put their ear to the glass.
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Jaycee,
Not that this will solve the problem, but I swear that within the last week, I got a pop up ad that showed a mask with clear plastic over the mouth for the hearing impaired. I'm still not sure if it will work, but even if your friend is moving, you might see if you can track it down and suggest it to her to help her out.
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You can find clear ones online at Amazon and there are a LOT of optons available pretty reasonable already made.
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Need to rant. Was in for 6 month visit with PCP, and his PA, who I don’t like. She’s peering at her laptop asking me questions. Been at this office about 8 years. She asks, does Dr H send you for mammograms? Me, I don’t have anything to mammogram. Which you could see if you got your nose out of the screen. Grrrr. 3 questions later, same subject. NO #%$&
Then they both barked at me for my great a1c, that I kept repeating the Endo is ok with. PCP wants it up higher. Nope. My feet, eyes, kidneys, less chance of heart attack. Not theirs. My body, my choice.
I’m seriously thinking of calling the office mgr, who is Dr wife, and telling her I don’t EVER want to see PA again. Can I do that
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Spookiesmom, of course you can make that call. Whether or not it would work is another question. How do you think they would respond? You might at the very least achieve some changes for the PA. By the way is she a PA or a medical assistant? Vast difference in the preparation.
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You can ask for that but honestly, why stick with a PCP when the PA is such a mismatch for you? I sure wouldn't.
My version of your "have you had your mammo question" comes up every year during our open enrollment. We have to ask a ton of questions about our health and medical history and I always get asked about a Pap smear . . . I have no cervix, there's nothing to get a smear from. This isn't new, that's been the case since November, 2003.
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I missed a PCP appt. last Oct. Hubs was in the ER that day. I never re scheduled. I did get a flu shot when I was in their office with hubs for a follow up after his diagnosis. I suppose I should schedule an appt. for this fall. The MD there is married to the NP. They are both exceptional people. They listen and answer in a way that I can understand. Like when I asked how my husbands ct scans went from possible pneumonia, to a possible obstruction, to extensive stage small cell lung cancer in a matter of 8-10 weeks!? Without a biopsy of course, a lot of stuff on the scans reads and looks like an infection. After the 2nd abnormal scan, that's when you get referred to the pulmonologist who is booked over a month out. Meanwhile the disease has exploded through your body and you are in so much pain, you land yourself in a hospital to finally get a biopsy.
I miss him. He was out in the garden with me last night. I just mowed Sunday, but had to do it again, and water of course. Beets are ready. Picked 3 zucchini's. Peppers coming OK. Tomatoes look like hell, but I'll get a few to eat, and the wildlife has pretty much helped themselves to the green beans and 1-cucumber plant.
Enjoy your weekend everyone, I am back to the Bay tomorrow. 2nd time this week. I'm tired but grateful for all the folks willing to help me. For free!
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I am glad you have some support and can get some needed rest.
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ctmbsikia he misses you. He loves you, he is with you always with you.
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((((ctmbsikia)))). Hang in there.
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I am so tired. Went down to the Bay both days. Took my friends Saturday and got a few little things done. Went with my son and a helper yesterday. It was HOT! I can't tell you what a screwy deal my husband got into with this project, all I know is I have to finish it! So, to keep sane and not wanting to complicate my relationship with his cousins (who the other cottage is for), after many sleepless nights I've come to the realization that I should not look at this from a business prospective, but rather how we will reap the benefits for years to come-THAT will make it all worth it. Take the hit and keep going. The cousins next door did hire a plumber (hubs would have done it all), and they agreed they will be footing the bill for him to plumb out my cottage as well. As previously mentioned, my brother the electrician helped me with the wiring and gave me lights. For free! My sister in law gave me some boxes of left over tile. The owners were not going to supply a higher end material for the bathroom, and I want a nice bathroom, so with their permission we put the tile in yesterday. My son also hung and wired up a few more lights.
Now, I am sort of at a stand still until the plumbing gets done. I'm OK with taking a little break until then. It is my hope to have the plumbing and electricity
ON and working before the end of this season. My goal is if I'm getting a free ride $$$ wise next year, I need to have it inhabitable. I am not so worried about it being 100%, but having those basics is huge.
Attaching some progress shots, and the view from my front door.
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That view is worth a lot.
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lovely! Hope you can enjoy for years to come!
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thank you. I’m trying to do my best to get thru this, but I miss him so much. I know my kids fear I may tumble into the I might drink and smoke myself to death too. I haven’t spoken to them much today. I need to respect their space as welll. I need to get on with being alone. Let them get on with their lives. I want to be no burden on them. How do I tell them I’m starting to fall apart? When they are going through their own s$it. ???? I don’t want a strangers help either. While I certainly respect that. I’m stubborn.
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Letting your kids help you might fill some of their empty feelings, too. It's still a recent grief and you're all having to learn as you go. Talk to them! There's more family misunderstandings from lack of communication than just about anything else. My family was the type to never discuss personal issues, and now that most of them are gone, I realize I didn't know any of them very well, even my parents.
What a beautiful, peaceful view that is!
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Thanks Alice. We do talk often, I'm just getting used to the times (nights) when they are not there. I can keep busy most of the time, but Mondays have always been a down day to me, and I was actually feeling down last night. It's a little better today, and I have a couple of things to do after work so I feel tonight should go better. My car goes in the garage Thursday so I will be working from home. Feel like I should try it for a day in the event we might have to do that again. I hope not.
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👍
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ctimbsikia - My husband has been gone for a while now, it will be 2 years Sept 24th. My husband passed suddenly and unexpectedly, but I don't know if that makes a difference when you are grieving. My kids took it very hard and my grandchildren were very upset, one was outside yelling and crying because she did not know God's phone number to talk to PopPop.
Everyone grieves differently and its ok, it is better for me now, it is not every single - all day grief anymore. It now comes in waves and less often than it did. The 1st holidays afterwards were very hard, and I think I was trying extra hard for my kids and grandchildren, but this last Christmas, we did things a little bit different and I think that helped.
Thinking of you during this hard time.
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