My Husband, My Life, My Love, My Family, My Cancer
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Hello all.
Thanks Mel for thinking of me.
I am ok. I have been reading all your posts, just not posting myself. Night before last I had a horrid nights sleep-- pain. I posted about it on the Bone Mets Thread. Last night I slept some better by practically sitting up with pillows all around me. But yesterday I just didn't feel like talking. Tired, frustrated, lonely.
Today I went to the Dollar Store for soap, TP, cat litter, etc. I go early due to Covid. Now I am in my house for the day. Zoom gaming tonight for a couple of hours. That will be good. Still learning, but something to do and can talk to the other gamers ( 3 other people). Our county is in the warning level for Covid cases. But... people still go out and socialize. Church services scheduled. My texting buddy still eats out every day. And one of our church members hosted a cookout last night at her home--- I didn't go.
Hope Moomala is doing ok??? Missing Philly.
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It's going to be another hot day here, supposed to get to 115. So nothing planned for outdoors today.
Mel, you inspired me to sew again. I bought a sewing machine years ago and it has been sitting in the closet. I pulled it out the other day. I think I'll try to figure out how to use it today and try making some face masks.
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With all the talk about sewing and doing creative things and new furniture, I am starting to think about seriously decorating my wee little apartment. It is currently a hodgepodge of stuff that does not look good, living room includes a microwave and breville oven as my kitchen in the apartment is non functional. I think my project for the forseeable future is getting rid of things that are not needed, buying nice storage things, saw quite a few at amazon that would provide me drawers I could put stuff in (fabric) and not terribly deep, maybe 12 inches which would leave me some floor space. I also have to tell DB and SIL that I don't want to keep the chair I had to trade because my good one was too wide. I have decided that since 99.99 percent of the time, I am here alone, getting rid of the chair would allow me to pick a dresser that is also about 12", fabric drawers and a wood top would afford a lot more room. I am not in a position to do anything immediately, have to save up for it but I am actually starting to like the idea of finally. I want my apartment to look nice, not dumpy like I just picked up stuff to fill it but not nice looking stuff. I may also take some of my shelves and stick them under my bed which is on risers and put stuff in there like overflowing laundry or disinfection supplies.
I have a couple of weeks before I would tell them I no longer want the chair. In the meantime, I will strip off all the blankets and stuff and prepare to sell or give it away. Going to also simply offer the panda spin dryer that broke up for free as well in case someone wants to take it off my hands. I have a working one and could use the extra space. I also plan in the future to have someone install a box shelf above some of the doorways in the house since there is previous little storage. Though I have cubbies behind the couch, It is a PIA to actually pull out and put back in. Dreaming about what I want to do is feeling good to me. Will take time but I don't plan to move anytime soon so I have time. The chair will go first even before some to replace it. I have a folding chair for the rare occasion people stop by which almost never happens.
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hi everyone. We are getting ready for our own little heatwave here - officially expecting 30 today and 36 tomorrow but I'm inland a bit and usually get a bit warmer. Dd and I went together with the dog early this morning so we could run her on the fields while it was still cool. I was going to pull out the dog agility equipment out of the shed as I've been finally feeling more up to it but it will probably be too warm so I will do some obedience and trick training indoors instead.
Yesterday I was tired but today so far I feel good and have been doing lots of things. My ds was asking "Are you back on steroids again? You're a bit manic lol"
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Alright we've now gone from blazing hot to soupy cotton ball - today and yesterday were huuuuuuumiiiddddd. And grey. So grey.
Made a big pot of lentil bolognese for dinner and opened a nice bottle of red wine (hey, some had to go in the sauce anyway!). I'm not a huge wine person but some now and then, especially when cooking with OH is always enjoyable. Got a workout in today finally and looking forward to sleeping well. Booked a ticket for next Saturday morning swim at the big outdoor (non-heated) lap pool in another part of town as I am still having difficulty getting through to get a membership number for the one practically around the corner. Oh well, it'll be nice and early, no one on the train to get there, and I will be home before 9am!
We've finally resolved the rental situation here, so in the next few weeks I also get to play the rearranging storage/new furniture game. I think its a lot of fun to find innovative storage solutions and there is nothing more rewarding than tidying up a living space with clean surfaces and everything well organized.
Have a good one, all!
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Candy,
Itbreaks my heart to hear that you are in pain. I take the lowest dose possible of a pain med and it does not nearly cover my pain either. But it takes the edge off, so that's something. I give you so much credit for doing your Zoom game and trying to stay engaged with others. Hang in there girl. This Covid stuff is not going to last forever.
Mara, I love to decorate. My issue is I like so many different colors and styles, and to zero in on one is hard. There is a website called Houzz, and you can create an account and then save things you like to it. Pinterest is another one you probably already know about. Half of the fun is saving what you like, and then finding it at Overstock or Wayfair. That's what I do.
Mel, see how many of us you have inspired with your sewing? Awesome sauce!
Well, this is the second weekend I am sick from Gemzar. I am running a fever, have a nasty headache, and am also still very dizzy. So Monday bright and early I'll call my MO. Another one down. I will not continue to take a drug that makes me feel like this. No QOL.
Hope you are all having a good weekend.
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Laurie, thanks for the tip about Houzz, I will take a look. Most importantly, I am sorry Gemzar has made you so sick again. Of course this is no QOL. Need to be able to live during treatment. Glad you will speak to the MO to stop it but sorry you went through another drug. Hopefully there will be something with tolerable SE that still let you have a good life and keep you stable.
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Hello all of you creative ladies!
candy sorry about your pain. It just is terrible, especially to keep you awake.
Booboo the SE’s from gemzar sound awful. I hope it’s killing all your bad cells at least. Hopefully you’ll feel better soon.
Mae that game looks hysterical. Do you actually eat the jellybeans that have gross flavors or is it just in your mind?
I thought it would rain but I did manage to get a brief swim in. I have to force myself in but I feel so much better after I start using my muscles.
Tanya
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Tanya, all 4 of us ate them but us girls (leTisha and me) spit the nasty ones out. I think I had Barf (which tasted like old beer), Rotten egg and Spoiled milk. Gross but we all had a good laugh and they (our German friends) were the ones that gave me the jelly beans and I don’t think they’ve had them before, so it seemed like a great idea to make them eat them with us.
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booboo, I'm sorry to hear gemzar is being such a beast to you. I hope your MO comes up with something for you
The icky jelly beans became a thing from the 1st Harry Potter book. I've only ever had ones that pretended to be bad (ie had gross names) but they all tasted fine. I don't think I'd like these ones - tho my taste buds are all gone so nothing tastes properly to me anyway so maybe it wouldn't matter.lol
I had an unexpected little nap and now I'm groggily trying to sort out what to do with myself next.
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Moth and Mae, I have also fallen victim to the Bertie Botts earwax jelly bean, yuck.
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Tanya, glad you got a nice swim in. Believe it or not, I am similar to you as I must initially force myself to do something like a walk. I don't wake up saying, Yay, I can go for a walk. Like you, I feel much better physically and mentally when I have done it.
Still imagining stuff to do with my wee apartment. I have decided to save for some of those amazon dresser type things with the fabric baskets in them to replace where I am storing groceries in the living room, will be starting an aggressive purge of items, even though some may be newer due to the lack of size in the apartment and getting rid of a chair in favour of another amazon dresser type thing. It has a woodlike top so I can put decorative things up. I am going to clear everything but the lamp from behind the couch. Move anything that needs to stay but not in season behind the couch and go from there. I am doing this over a LONG period of time. Another thing I want done is a shelf added to my linen closet so I can put laundry supplies up higher. I will control my purchasing to make sure that my stuff stays within its prescribed place. I will figure out some cute dollarama type stuff for decorating. I also want to get some picture hanging kits to hang up some of my moms paper tole. One fell off the wall so using command strips is not good enough.
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Mara,
Don’t forget to also checkout Walmart. I have purchased several things from Walmart for my house, and I’ve been pleasantly surprised at the quality. I bought a headboard for our spare room bed, and it is really nice. Just thought I’d throw that in there as another option. They also deliver.
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Morning all.
I am ready for winter. These hot, humid days are yuck. I want to be able to open the windows and air out the house. I am here all the time anymore. Want to freshen up the air I breathe--not just AC air.
mara- I agree with Boo. I like Walmart stuff. I used to buy KMart, but they went out of business. I got a wooden lateral filing cabinet and a bookcase recently at Walmart. They deliver per FedEx. Right to my door. It was the put-together kind of furniture, but I did it myself over a few days. And it looks nice. Shopping for those things is fun. I wish I had more money to do that. Have fun organizing and buying some new stuff for your apartment.
Thanks Booboo for being concerned about my pain issues. Another troublesome night last night with pains. I just do not really know what to do. I am sitting up in bed, tired, but hurting. I am starting to dread nights. Kind of stuck in a vicious circle-- tell doc (PCP), no help, no sleep.
So sorry you are having such a bad time with the Gemzar. Any idea what will be the next treatment? You cannot continue this way.
I did the Zoom gaming last night-- 3 hours. Still so much to learn about the game. The others in the group have played many times before, so I am the newbe. I have to stop and ask questions so much. I will continue on as long as the group will have me, but I wish we were playing a game I knew about. But it is some sort of activity and socialization-- I need that.
Well, signing off for now. Church service online now.
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Mara, why do you have a nonfunctional kitchen in an apartment you are paying for?
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Candy,
I am very concerned about any of us dealing with pain. It should not happen. Can you tell your MO and ask for a low dose pain med? I am taking Percocet at the lowest dose possible, and my QOL is much better. It hurts me to think of you in pain my dear.
I just finished church online too. I miss going and seeing people face to face. But I know it will happen again before too long that we are back together again.
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The rent is good and includes electricity and is in a really nice location of the city with a lot of trees, parks and houses ranging from modest to million dollar homes nearby. I am on disability so need to save money rent is pricey elsewhere and usually does not include electricity. I also want to avoid public housing as long as possible because it would not be in good shape for the most part. It has a fridge and stove and they do work. If I need to prep I put a cutting board over the sink. The thing that stinks is the lack of storage. I like the microwave/breville convection oven build on one wall of the living room and actually prefer the breville. It has a storage cabinet below. It came from my old condo. I use the stove when I need a burner. I don't mean to imply the kitchen cannot be used, just does not have much storage. I keep a lot of cookware within the oven. I am pleased that I was able to install a portable washer and a separate spinner to be used in the tub and a small electric dryer in the bedroom. Saves a lot of money not having to pay laundry.
I will keep checking walmart and dollarama here for organizing as well. First thing I will do is purge anything I do not want and see where I am at. That will help me what to put in. I quite like the dressers you put together with fabric drawers from Amazon as well. Not too heavy or deep. Would keep my narrow living room looking more open and allow me to store things. I also should learn to simply slide out the sofa and store somethings there as well. So much fun to imagine what I will do. I will do a bit at a time. I definitely appreciate the suggestions.
Slept poorly last night, maybe 3 hours so today has been a weird mix of walking on the treadmill and dozing in between. Weird but seems to work. We are having storms here so outdoor activity is on the kibosh unless it stops.
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Boo- Maybe I am my own worst enemy. My PCP recommended gabapentin- three times a day. I read horrid things about it - suicidal thoughts, seizures, etc. And that it is hard to come off of once you start it. When I said No, he said to use Tylenol then. I really need a pain management person guiding this. We could discuss the RA, the mets, the mechanical issues with my discs, etc and choose something that might work, paying attention to side effects. But.... we do not have that locally. Maybe with the new cancer center--- I am going to ask.
Have they said what will be next for you if you just cannot tolerate the Gemzar? I worry about you. Fever, headache, dizzy. Not good.
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Mara, I’m not sure I understand. It seems you are making excuses for substandard living conditions because you somehow feel fortunate to not be worse off. Why are you reduced to using your living room as your kitchen? What doesn’t work about your kitchen? Predumably a functional kitchen is included in the rent you pay
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as a Canadian I can understand Mara' situation. In major cities, our real estate market is crazy. Old run down houses are selling for millions. Rental vacancy rates are low and and rents are high due to property values. Almost everyone I know has their adult kids living with them because housing is so expensive. Our safety net is struggling as disability pensions are not aligned with housing costs & it's hard to get really decent housing unless you co-house with other people.
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it may be an efficiency type of living arrangement. Is what I’m picturing. That would make total sense. To me
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I was thinking efficiency apartment-- has working stove and fridge, and sink, just not much storage or counter space.
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Candy,
Not sure what’s next, but I simply cannot take another round of this chemo. I have never been so sick from a chemo before. Even PIQRAY seems gentle compared to Gemzar. What’s interesting is that most people tolerate this drug pretty well. But since we are all different, with different physiologies, this is not a drug for me. I hope my MO doesn’t get frustrated with me. The only reason I stopped Abraxane is because of hair loss, and wearing headcovers or wigs in this heat is hard. But I’d be willing to go back to it because I could tolerate it so much easier than Gemzar. I’ll let you know.
I also take Gabapentin at night, and it is a non-habit forming drug. I started taking it to sleep better, and I highly recommend it. To be honest, it doesn’t do much for my pain, but I get a good night’s rest when I use it.
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booboo, I’m sorry you’re having a hard time but I totally agree on abraxane, I had all the severe infusion reactions to taxpayers and taxol, abraxane was my last shot, it was a relief.
I had a small apartment close to the beach where I grew up, I LOVED it so much! But the kitchen, lol, just a tiny corner with a sink, stove and one set of cabinets, no drawers, had my silverware in a cup. It was great though, downstairs was a large living room, 1/2 bath and little kitchen. Upstairs was a huge bedroom with 6 big windows and a skylight, and a bathroom with a claw foot tub.
I was saddened that my happy “drink up the sunshine” wine glasses were in the stolen trailer, so I ordered a replacement set, then I saw a thermos and infuser bottle that were way to cute to pass up, I’ll never drink sad again, lol
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Melissa, all the stuff in the kitchen works. I have a refrigerator and stove. What does not work is that there is no real countertop, cabinets are tiny as well. I had nowhere to install my microwave or breville oven so in one corner of the living room, I do have kitchen overflow. That does not bother me. My apartment might be 500 sq ft. The good part is the property management addresses things right away and I am in a very nice neighbourhood.
Moth is right, rents are skyrocketing here and I would not be able to live anywhere else on my disability. Candy is also right about the working stove, fridge and sink, just no real counter space. Everything works as it should but there is no real counter space and there was no place to put my microwave and little convection oven so part of the living room holds the over flow of groceries etc. I am pleased with the price of the apartment and the fact I got a fully functioning laundry and folding treadmill in here, just want to decorate to make it look nicer. Also not looking for larger as the tiny aspect keeps it easy to clean. I am having fun imagining what I could do with it.
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Boo- Your MO shouldn't get frustrated. How would he/she feel about having to take this med and feeling so cruddy. But I get it-- not wanting to upset your doc.
Do you just do the gabapentin at night, not the rest of the day? Any side effects for you? Grogginess? I would sleep ok if I didn't hurt. I do not have problems with sleep, just the pain keeps me up or tossing and turning. If it doesn't help the pain, then what is the use? And I think my pain is mechanical/positional. I feel better during the day when moving. But noticed when I sit a certain way during the day then that butt bone hurts. And when I lie on that side/hip that hurts. I don't know.
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I agree Laurie, MO would not have the right to be frustrated that you don't want the drug making you so sick.
Candy, hope you get your pain sorted out as well so you can sleep as well.
I deleted my last post because I don't want to start inundating with pictures of my place. It is just a little tiny apartment. Everything works and as time goes on, I'll get nice furniture for it as well.
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Mara, I apologize. It just sounded like maybe appliances or other things might not work. I get the problem with space
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Melissa, no apology needed.
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Boo~I'm worried about you (and candy) not feeling good. This chemo is too hard on you, you have to speak up. You're not a machine. My goodness, to feel that way all the time would drive anyone nuts. I'm sorry that you're going through this. I hate cancer so much I have begun to lose worse to describe the hairy ass.
Hello Sondra. Good to see you. Mara. Oh Mara, no masks yet???? My goodness gracious. The mail sucks lately.
My desk isn't here yet Supposed to be here Friday. No such luck. I'm so sick of amazon and any delivery service basically. They all suck right now Not just with deliveries but with the tracking information. We just can't even track the damn thing. My dh has a missing box and a damaged main piece from his delivery that I was left with to deal with. Five huge boxes high. Wrapped in shrink wrap on a broken pallet. It was awful. I cried. Those boxes were the heaviest thing I've ever had to move myself. I moved four of five into the garage. The fifth. I just had had it. I could barely move. My son came home from work to move it for me I was a muscular mess for days. But I had remembered how strong I really am. I can't do it for a long time mind you, but in a pinch, I can be quite useful. I was shocked I did it. I'm lucky I didn't pull my back out. It is still sore though. I just couldn't leave the boxes laying in the driveway. The weather wasn't looking too great to leave them outside until my son came home like four hours later. It was shitty. Companies are shit anymore. They'll take your money, but getting the product just isn't easy anymore. Especially furniture. I hope it still is delivered. Or I'll have to pick something else and deal with a refund. Or immediate replacement. And I mean immediate. Right now my DH is sewing on the machine. Lol. I'm sitting on the couch. Makes wonderful items as well. Have good night everyone ! Philly says hello to everyone. Moomala~Hope you're ok. Rosie. Hello. Simone Good For you!! Get that sewing going!
Mae~Love those cups! Sorry you lost your others. Arse holes. Tanya~Loving the thought of the pool! Grew up with one So jealous. Waving hello to Melissa.
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