My Husband, My Life, My Love, My Family, My Cancer
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Mae~Oh honey, I don’t like reading this post and knowing you’re having such a hard time. I would definitely call Someone and speak to them about what you’re feeling In this day and age, we shouldn’t have to suffer. There has to be something to help you... just at least reach out and let someone know that you’re in this much discomfort! You are so very much on my mind... this is the hard part. Not being able to help those you truly care about...... hugging you!!!
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Mae, I agree with everyone above. Call someone for help with your breathing and aspirating from the problems swallowing. This needs to be done immediately. You need rest for this to subside and they need to take care of it sooner, not later. Hugs to you as well. I am sorry this has been so rough for you.
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Sending love to you Mae. It is a sad feeling to know that you are not having an easy recovery yet. I hope you've gotten some help with this either already or in the works for sometime today. I long to hear that you've gotten some rest and are comfortable. I wish that for you. Warm hugs sweet woman!
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Mae- So sorry you are suffering. Why so much trouble with your throat? What are the docs saying? I hope you will get relief soon.
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Mae, adding my support and well wishes for you. I too hope there is something your doctor can do for you, quickly. 🌸🌺🌸
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We too send our hugs!
We hope your doctors can get you some relief!0 -
Mae, how scary is that! You’ve done so well so far, hope someone out there can help you get this sorted ASAP
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One hour at a time my friend. I hope you’re getting your needed rest... I don’t want you in any discomfort !!!0 -
went back and got this because it applies today especially for Mae! Love you friend 0 -
Lol, yes those do apply! They got me in today for another evaluation. No improvement yet but discussed trying different head tilts to help swallowing and avoiding dairy for now, too much mucusy liquid getting stuck halfway and sitting. I’m told the pipes function ok but the actual nerves are not communicating the open/close pipes message well enough yet and unfortunately, that’s something I’ll just have to wait for. Ugh.
Anyway, I found a napping position that let me get a few hours without too much choking, so hoping for a better night ahead.
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Mae, I am glad that you found a good napping position to get some rest. Hopefully the nerves improve soon as opposed to later and that the head tilting make eating easier too.
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Mae I hope tonight is better for you and each subsequent night.
Micmel you dug that one up from Mae. You’re toooooo funny. Those would be helpful at a dental appt too.
Tanya
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Mae,
There are not too many folks from any of these threads who have affected me, but you are one of them. Maybe because of your closeness to Mel. I’m not sure. But one thing I know. You have GOT to fight to get better. I need you on this thread Mae. You have no idea how fond of you I have become behind the scenes.
I have seen your strength and determination throughout the time I have been here, and I know you can show us again the same.
Love you woman.
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Thanks Boo and everyone. True, this is kind of a low point for me at the moment, but have no fear, I am set up for an epic bounce back!
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Can only improve Mae! Will use expletives for you when you wish. Lov
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That a girl, Mae. You will get through this. First things first. Breathe without choking.
I wonder if there's something they could give you to dry up some of the mucus/fluids. Are you already on steroids?
My PCP almost did a happy dance when I saw her for my annual physical. She's so excited about how good my labs look. My Hgb, Hct, etc are actually in normal range. I've been anemic for so long, because of the cancer and or TX, that she could hardly believe her eyes. Remember, a few months ago my Hgb went down to 5.5? Never thought I'd get back up to 12.
My IR explained it best. The blood vessels in my liver had been enlarged in order to feed the rapidly growing tumors. That's why I was "losing" blood. Now, that the tumors are smaller, the blood vessels are looking more normal, too. I'll take a normal Hgb any day, it sure helps me feel more energetic. 💞
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Congrats Grannax 🎉
Yes, I am currently on post op steroids through the next few days. Presently, I'm just limiting the amounts I sip at a time to avoid too much fluid accumulation and dry swallowing what I can to clear what doesn't go gown right.
Seeing a nutritionist tomorrow for additional advice but not physically feeling any negative effects of malnutrition yet, so yay for small victories 🙂
Also, slept 7 hours last night, whoo hoo!
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Mae, was it like this with other procedures? I know you've been put out before and no doubt had tubes down your throat before. So, is this a normal and expected reaction for you? It seems almost irresponsilbe for a medical establishment to send you home to choke and gag on your own saliva. I am alarmed at how severe and long lasting this reaction seems to be. I hope to god it eases or someone figures something out and offers you a solution. I am sorry for your misery.
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Runor- I too am worried about Mae. Doesn't seem right that they let her go home like that-- unable to eat or drink without choking and gagging on own secretions. Mae- I don't want to hurt you or scare you, just concerned for you.
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Thanks runor, this was only the second time I’ve been under anesthesia. I recall some discomfort from the tubing after breast surgery but it only lasted a couple of days. This surgery was quite a bit different and although tubed again, this time I was on my right side with head adjusted for surgical position. I suspect the position and my own body weight was a factor but the prominent cause I’m told is the nerve damage, which isn’t something I can rush or exercise. The area removed ended up being mostly tumor and was tucked in deep in the cerebellum between my brain stem and a major artery.
It does totally suck but I’m glad to be home. They did have me swallow tested and monitored to make sure I was capable of dealing with the throat issue. Next is to make sure malnutrition is solved before becoming another wrench in the recovery.
I suspect the nerve issues are more common with brain surgery but I just had no idea that this extreme was a possibility.
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hi Mae,
Ugh! Recovery sucks ass! Sorry for my bad language but damn! And I did Some quick research/reading up about the swallowing issue and it seems like an unfortunate common side effect of the procedure you had done. Sigh. I just wish that docs would alert us to this possibility so that we can be more mentally prepared in case it does happen. I read in one article that drinking through a straw can help? So glad you got some sleep!! Keeping you in my thoughts 🌸🌸🌸
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Mae, I am so sorry. Alarmed to hear about malnutrition. Personally I carry my own insurance against malnutrition on my gut, thighs and butt. There is a whole lot of padding between me and accidental starvation. Damn. It pretty much takes an apocalypse for me to lose weight. But when I DO lose weight, it's because things are bad. Very, very bad. I hope this is not the case for you and you find your way back to your rather eclectic and exotic eating habits. (munching lobster in Micmel's living room!)
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Mae, I understand swallowing is an issue, but is it possible to blend up your food so it is like baby food consistency? Would that be helpful in addition to tilting your head?
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Mae. That makes sense that the nerve damage happens more often with brain surgery. You passed your swallow test, that's good. Now, if there was a magic wand for healing those nerves. Maybe the nutritionist will have some advice for you. I sure hope so. 💞
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checking into see how Mae is doing..... small sipping it is. The nerve has got to calm down first. Maybe its all inflammation, that just needs time to go down. We can't see everything. Going on. I am sending you good vibes and thoughts and please know you are on the good thought train!
Good to see you too Grannax missed your smiles. Hello Runor my friend. Always a pleasure .
Minnie~ hello lovely lady.
Tanya~ had to get something to make Mae smile. What better thing. Than her own work!!?? I just wanted her to laugh. After all , it was funny then. So it certainly would be funny now! I have since wanted to get some of those. Lol.
BooBoo~ you're a sweet friend and I adore you. Yes I do .
Philly~ Hello sweet beauty. Miss seeing. You around. I hope you are doing well. staying away from the colds? They are everywhere, everyone I know has a cold. I've been fighting one for weeks.Hugs to Mara and Candy. 🌻
Karen~ hello to you as well sweet woman.
Today I went back to bed. Ooooppsssss. I woke up around 1:22 pm I felt like someone was drugging me. ( which they are kinda) I am a professional sleeper in case anyone didn't know what type of profession I have. My pillows and blankets are my employees and my dogs are my customers. If I go out twice in one day it's a miracle. Yesterday I went to the dispensary, then to cvs, then to giant. 😮😮😮😮😮I couldn't believe it. I was truly a miracle. My back hurt so bad when I was done. Earlier that day I had done three loads of wash and folded them. Cleaned a full bathroom. I was spent. I was thinking that was why today I was pathetic !! It's weird the energy spurts we get. Anyone else get these?
Tomorrow is my sons 23 birthday. He doesn't clean shit. His Room is scary. I feel like hiring a maid to clean just his room!! Then we are already into,February. Oh joy valentines cash day. Charge out rageous prices for everyday things we could have anytime half the price. I don't know but it seems like every time I turn around it is time to spend money on something. Birthdays. Valentines. I need to hit the lottery ladies. Gotta play to win. Lol. Love to all
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Micmel, when I was out of money, I got some things from the Dollar Tree. They would have some nice things and I could save money for better gifts later. I don't have a sweetheart or kids so valentine's is not an issue. I do think that since it comes so close to Thanksgiving and Christmas, there should be a limit of ONE holiday you go all out for. Better on the wallet I think.
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Illimae— sorry to learn that your nerve issue is still messing with you. Cannot imagine struggling with swallowing. BC sucks
Keeping you in my thoughts and sending more positive vibes your way.
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I haven’t posted lately. Going thru crap right now and seriously tired of it.
Finished rads to my hips. Rads beam had to touch part of my bowels. Side effects I am dealing with this week is constant nausea and days of big D. Had to get fluids Wednesday and going back tomorrow for more. I am pretty dehydrated and TIRED of making trips to the restroom.
I read posts here everyday just worn out and not posting much.
May tomorrow be a better day for each of us
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Dodgersgirl and Mae - take care of yourselves ladies. Its tough to read two of 'our own' going through tough, painful times especially as I am sure all of us have been there ourselves at one time or another. Nothing much you can do but keep putting one step in front of the other and try for every new day to be a better day than the last.
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Dodgersgirl, I am so sorry about you having such a hard time. I hope it subsides soon and that you have been prescribed meds for the nausea and diarrhea.
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