My Husband, My Life, My Love, My Family, My Cancer
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Hang in there, Mel. We are all pulling for you and your husband! So sorry you have been having all these issues. NOT FAIR!
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Thank you threetree it has been a bad start to the year for my family. Beginning with the death of my beloved mother. I am still heavy grief stricken and in shock it’s been a month but every second has been raw. Then throw in us both getting Covid. Bam. POW right in the kisser. I’ve not been this sick since Iv chemotherapy…. I appreciate all of you ladies.
hugs to everyone. With heavy masks. No worries. I think my middle name is alcohol and I don’t even drink. !!!
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Oh, you are so very welcome, Mel. Boy do I ever know the loss of mother grief! There's just nothing for it, but to wade through it, unfortunately. It is a real unique experience and nothing in the world can prepare you for it. To get hit over the head with "family Covid" on top of it, is "over the top". Again, we are all rooting for you and here to listen.❤️ I don't know what some of us would do without you and your living room.
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Hello all, I have been trying to keep up but ended up in the hospital on the 3rd and just got discharged last evening. I ended up with respiratory failure and had to have pleural effusions drained. They took a liter off of each side. My breathing is better now and I got set up on home oxygen. Still trying to get used to wearing it all the time.
SondraF - I hope they can find something effective for you and that the shots in the butt aren't too bad.
Mel - Gentle hugs to you. This year has definitely not started out well for you but I am in hopes that it turns around quickly and you can kick Covid to the curb. It's a monster.
Mara - I am in hopes your new garbage can works well for you. I used to cook eggs in the microwave when I was working and then put them on an English muffin with cheese and sometimes ham. It was fast and filling when I wanted to get out the door.
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emac Geez a liter on each side…no wonder you were struggling! Sorry you wound up in the hospital but so glad you were drained and have relief now.
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Emac-when I had pleural effusions, they put a Pleurex catheter in me so that the effusions could be drained every few days. It certainly wasn't pleasant having the catheter but it greatly improved my breathing. Is that an option for you? I only had it in my left lung-can't imagine how tough it must be having it in both. Glad you are home now and have the oxygen available. Did they give you a portable one so that you can get out?
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Waving hi to all the ladies here at Mel's Place. Mel, I'm sorry this year has bought you such loss and illness. Wishing that the rawness of losing your sweet Mama fades to sweet memories. Wishing for warm weather to warm your body, too. @emac877 So glad they were able to drain your effusions and get that O2 going. I've had that done to the tune of almost 2 liters. Shortly after that, I had a pleurex catheter inserted and drained every other day. Made a huge difference in oxygen levels and no need for portable O2.
Temp. is going to hit low 80's this weekend. Woohoo. We are going to turn the pool heater on and take a dip. When the outside temp. is too low, the cost to heat the pool is so expensive.
I haven't heart from Pfizer. Sunday is when I'm due to start my next cycle. I know they deliver on Saturday(s) but not sure about Sunday(s). Holding my breath that all my paperwork has been accepted and shipment is on the way.
In your pocket for scans and all life's needs. Have a peaceful evening.
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Emac ~ thinking of you and hoping you’re feeling better. Us ladies can’t catch a break. Hugs for each of you.
irish~ enough enough. They can’t play with your life. Any number you can call for an update?? Grrrrrr.
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I had a pleural catheter installed as well. It worked well enough to be able to remove it after a few months.
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Mel - I hope that covid leaves your home and doesn’t come back! Damn the struggles are endless for so many.
emac - that’s a lot of fluid to be drained. Prayers that the plural effusion does not return.Shanagirl - such talent! I’m sure your friend will burst into tears when you give her the painting. What a loving gesture on your part.
Mara - you need to be a You Tube influencer and get paid for all you household and food tips!
My hubs is just over 3 weeks since his knee replacement and he is doing remarkably well. He’s able to help around the house with vacuuming and some dog duties. His ortho and PT person are amazed at his recovery.
Sending gentle hugs to all!
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Good to see you wrenn! Hope you’re well !
goldens~glad DH is coming along so well.. good to see you .
starting to come out of the Covid fog. Wow. What an illness. I think it’s as bad as the flu. But a little different. The cold is a beast. Still deep coughing. I sound horrible. Has been no picnic.
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Mel, I can empathize the grief of losing a mother. I spent months crying myself raw, the next months of moving to this apartment, packing up my condo which DB and fam took care of and moving me in here were all a blur. Cried after being here for about a year. Dropped out of Christmas and other holidays too. I no longer cry, cannot watch the last birthday video for her either. Would make me feel sad. I do understand, someday your mind will ease the grief giving you all the good memories you have of your Mom.
Emac, sorry about the hospital trip but glad your breathing is better, I will try the solo egg and english muffin idea as it sounds good, in your pocket that your breathing is better regularly. Garbage can should be fine, keep inside somewhere, bring it down the stairs empty and put a bag or two in there and drag over.
I hope you get your answer Irish, working my way down the new comments.
Goldens I don't cook that well, would love that though as I watch all the shows that show eating on a budget. Thank you for saying that.
Mel, glad the COVID is lifting for you, my cough post flu hung around for about 4 days after feeling better, no stuff being coughed up but it was a pain.
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So not sure if going out today, would be usual DB shopping trip/visit. I am telling myself that we will not go so I don't feel disappointed. Leaving the ball in their court for that as they were both quite angry. We will see, I am fine either way.
Waiting for the garbage can to arrive, city does not have pick up until next week so that is fine. Will put my name all over the can and bring back in. Sounding like prop managers wanting to sell building, still not going to move so not too worried about that.
Done laundry, sink cleaned out post breakfast. Split small beef pie in half after cooked, sprayed a regular plate with cooking oil, add one egg, beans that were chopped with croutons, spooned those out on egg plate, put the silicone cover over top, cooked for 2 mins, brought out and put the half beef pie on top, added small spoonful of caesar dressing and salt, mixed together and was very good and filling. My food is not pretty but thanks to youtube videos, I find new things to try. Would love if our Dollar Tree stores had a frozen section too, would be fun to have an extreme budget meal. I do love using the croutons chopped with beans since the texture of ground beef is preferable to the texture of the beans to me. I also want to try some stuff with pancakes like making a bread type thing that you could stuff or melt cheese on top of in the oven. Will have to figure out a way, I know it would not be crispy but may be good.
Hope everyone has a really good day, in pockets for those who need me as well.
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Irishlove - Oh my gosh 80s sounds wonderful and so does that pool! I hope you enjoy it.
Thank you to those that mentioned Pleurex catheters. I have not had that discussion with my MO but it's on my list to discuss at my next appointment. Doing okay at home. I am still having some rough breathing and shortness of breath but trying to use my nebulizers. I was set up with home O2 yesterday and I do have a portable unit so that I can get out to appointments and things. I do have a question about the catheters. Did they hurt staying in like that? I would need one on either side I think.
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Emac-The catheter hurt for a few days around the incision after it was inserted but once that healed it didn't hurt. You have to keep the incision areas under sterile bandages naturally. But I was able to sleep on it, etc. The biggest pain for was not being able to get it wet. I like taking baths-I just started taking very shallow ones so the bandaged area would stay dry. I think you would need two but maybe they have something that works on both sides.
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Just want to let everyone know that after my post last Sunday evening about what I was told was new spread and fractures, that it was wrong and I continue to be "stable". I saw the oncologist today and unlike the ER doctor, he reads it as "stable". I cried again, but this time it was "happy tears". I also read the radiologist report as saying stable, but the ER doctor actually came into the room and told me how he was so sorry that he had to tell me that he was seeing new spread and fractures on the CT. He held my hand and tried to make me feel better and said that he would imagine the oncologist would probably have some good options for this new situation. He had read the report incorrectly and was seeing all the old, now stable, injuries on my bones, and thinking they were new! When I got home I kept reading over the report and all I could interpret it as, was stable, but I'd been told by the doctor in person, that there was progression. The onc agreed that all is stable too, thank goodness! I want to than all of you who expressed your sympathies, so very much, and apologize for the "false alarm". I also want to thank those of you who told me about your own reports that were interpreted in error, as it gave me the courage and inspiration to dig further into this! I appreciate all of you and all of your input and again am just so sorry that I posted incorrect info, although I did believe it to be true at the time. The oncologist said that while unfortunate, this sort of thing can happen occasionally.
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I have to admit that I did get sad again, no one calling to go out or talk. I am scared of my SIL and her yelling and unsure what to say to DB. I will give them til April, if no response, will have to get a POA of my own and new trust person for my account that is in trust. Not because DB will take anything but because I will need access. Damn the whole situation is so stupid.
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Awww, I'm so sorry that you went through this, @threetree. I know the ER doctor's heart was in the right place, and based on perhaps his knowledge and experience he thought he was sharing the correct information, but it's so frustrating and disappointing that this happened to you. As if there isn't enough stress when one is metastatic. I'm glad that through the support and feedback of others though that you were able to get the correct information, and that it was that you are stable. ❤️
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threetree Yipeeeee… So glad all is ok! Breathing a sigh of relief.
Mara I'm sorry your feeling sad , I am holding out hope that your DB will reach out to you when the dust settles. I agree what a shame it would be not to reconcile and find a common ground.
Stable CT for me today, I am beyond thrilled!!!
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Cookie - Thank you, and a big congratulations on your stable CT. ( Now there are two of us 😊.)
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Woo hoo stable scans. Congratulations ladies. @emac877 You are always on my mind with such difficult struggles with this disease. Please get back to regression. Like someone else mentioned, the surgery area was tender, but after it healed, no pain. Now if you need a cath on both sides, I would recommend sleeping on your back. Also when you open the cath to drain in the bottle, go slow at first and then build up to what is comfortable for you. Too fast and it hurts like a bear. Too slow and it'll be a long day. Measure output and when it gets very low, time to talk to MO about having it removed. It took me about 3 1/2 months. To avoid some stuff I went thru, make sure you have your bottle rx ready to go. They are expensive, so make sure insurance is also approved.
@mara51506 I hope the situation blows over, but honestly you have done nothing to deserve anyone's anger. You are needing to take care of you, not someone else's fragile ego. But I pray they'll see the wrong they have done and clean up their act and love you as your deserve. Hope the trash can doesn't get legs and walk away again. If so, put a mouse trap in it. lol @micmel GLad you and DH are on this side of healing. I coughed so badly I thought I'd break a rib. Awful virus. Dear step-sister has long term covid. She's only 47 and it has affected organs, fatigue, etc. She's had to leave her long term position and apply for disability.
Well score one for the good guys, I called Pfizer today and they said it was in "executive office" for a decision. I reminded them Sunday is my next cycle. They called back left a voice mail, requiring me to call them. I was scared to death. Why couldn't they have just said you are approved and we will ship it two day UPS?? Instead I was on the phone for ages to find out I am approved till end of year. Please don't get me wrong, I'm thrilled. But what if??? Gulp.
IN pockets for scans and all life's needs.
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Well, made two purchases of stuff to cook pancake mix in and are small. A dash waffle iron and a dash pancake or egg cooker. They are smaller than the sandwich maker but figured they would be good for a savoury tasting pancake or waffle. Worth a try anyway.
Not sure what I want today, still have half a meat pie to use. Will probably make some rice in chicken broth and do the same thing with an egg and lentils this time, should taste good of course, add the beef pie leftovers as well, put some ranch in to season a bit.
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Irish love, planning to keep the trash can in my house somewhere and clean it every garbage day. Probably in a closet or beside the bed on the side I do not get out of. Going to initial and write the unit number and initials as well. As far as my brother and SIL go, almost called last night but stopped myself. If I do not hear from them and it gets to April, I will have to get forms for a new POA and person to look after my trust.
Threetree, happy you are stable, super news.
Mel, I am hoping you feel better today, in your pocket if you don't.
Cookie, if there is no reach out, I will text brother and find out where we stand, are we going the route of younger brother and no longer seeing each other or what. Not going to reach out to SIL as she holds a grudge forever. As far as older brother, I will give him a couple or few weeks first though. Not sure when or if I want to talk to SIL as she was the person hollering. For the mean time, I have to keep my emotions in check as it does not accomplish anything. Also need to find a social worker that is virtual or over the phone to talk to on how to approach things as well. These people are listed as emergency contacts so it is important to maintain contact. We will see what happens.
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Hi Mara~ I’ve been think in g about you and your issue with Db. Give it some time. Family can be jerks. But at the end of the day. Blood is blood. You’re in my prayers. I’m in your pocket. Covid lingers on. Can’t wait till it’s gone.
good news for stable and corrected scans. Love to all you ladies.
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Mara,
It may be that your brother can remain your POA and emergency contact but you need to allow them more space. They seemed to act like taking you shopping each week, while they were shopping themselves, was a huge imposition. I would stop expecting that. Reach out to those friends who said they were interested in getting together. Consider trying some activity-maybe a meet-up group where you might make some new friends. I wouldn't cut things off with your brother or confront him. Just live your life as independently as you can and be open if he contacts you. The POA situation is pretty drastic-who would you get-maybe a public guardian? I think your idea of contacting a social worker to process all this is a good one.
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Threetree and Cookie, now there are three of us! My stable news was three weeks ago…
The pain from my Faslodex shots is gone and I am chugging along. It snowed again last night and the roads are terrible. There is only one main road going east to west in this town and it is backed up. My DH has an important Dr appt and has to go out in it so I am praying he makes it okay. I was going to go but I don't want to add any more stress or potential problems for him to worry about me. Now I need a good idea for the crockpot!
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Hey Intolight - A big congrats to you too! A trio, how 'bout that?
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Chicagoan, they called every week for shopping, never me. I agree, a break may be needed on their part. Getting mad as I was doing what was comfortable for me with OT approval was not all right. Not making any hasty changes and have been giving space as should be done.
I enjoyed my breakfast with chicken flavoured rice and a bunch of lentils and crushed up croutons, waiting for my wee waffle iron and pancake maker, smaller than the sandwich maker. Tomorrow, am waiting for electric can opener as I had a terrible time using the manual one. Still have part of the meat pie so eggs, little bit of lentils and meat pie will do dinner I think, sounds good to me.
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Ladies, I’m freaking out here. I got a call from the specialty pharmacy and was told my copay for my Truqap is going to be $3389.45. I’m stunned. They’re looking into assistance programs. Maybe I got off easy with having no copays for my Ibrance and my first two bottles of Truqap, but I can’t do this. I’m afraid our income from last year will be too high, but I still don’t want to pay $3k-plus for this med. Maybe if I call the manufacturer, which is AstraZenica, they can help. I was dealing with Pfizer before and a different specialty pharmacy. Breathe, Carol, just breathe…
On a good note, I’m having no real SEs with the Truqap. I just finished cycle 3. I also heard back from the genetics counselor yesterday. No new mutations found including the one for pancreatic cancer. She did mention NF1 (neurofibromatosis) which I already knew about it. She did say there was a connection between NF1 and breast cancer, but since that horse is already out of the barn, it’s kind of irrelevant to my current diagnosis.
Intolight, do you like chicken-tortilla soup? I have a good slow cooker recipe for that. The tortilla strips get added before serving, but it’s good and can be frozen. I also “baked” a spaghetti squash in my slow cooker recently. I think it took about four hours, but it didn’t require any babysitting.
I got letter from the SS office regarding my application for Part B coverage. They need more info from DH’s employer. Will try to get that done on Monday and then get this ball rolling again. Cancer, drugs, insurance, Medicare, etc. are all a pain in the arse.
At least I can eat. I ordered some hot chocolate mixes from Amazon. I’ll have some later this morning. Can’t have chocolate after 2 pm since it keeps me awake at night. Poor me…
Waving hi to all and hoping everyone has a decent weekend.
Carol
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Sunshine, I am hoping everything gets settled regarding the meds and the coverage. In your pocket for that.
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