My Husband, My Life, My Love, My Family, My Cancer
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HeyLovelies I’m in the car with DH driving up to the Cancer Center For my injections Fasoldex and Xgeva. Fun‼️🙄🤢. I haven’t really been reading along so I’llcatch up with you all later when I get back home. @illimaeLove love love the Donkey 🫏 picture..🩵
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Shana - Good luck with your injections! At least you had Labor Day Week-end to hopefully relax a little and not think about any of this. My day for shots is tomorrow.
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I love Kraft mac and cheese and bring the cups back with me (love to slice a hot dog into one!) as we cant eat a whole box alone. Instead I like to make what I call 'deconstructed tuna casserole' - You do up some egg pappardelle in the pot, drain, add salted butter and stir until coated, throw in peas and tuna, stir, add in more butter as needed to lube it all up and season to taste. Not quite tuna mac but its pretty quick on nights when you are outta ideas.
@candy-678 I was just upset today over the same thoughts, more frustration at not having anything to get my brain going. Just too much time on my hands, no structure, nothing to look forward to, feeling out of the loop and now Ive got some hangups about going out of the house. I do have the option of returning to work in a few months as I WFH and my job isn't difficult, and I may just do it to talk to other people and possibly think for an hour a day. Maybe. The cash is nice.
Had a very loopy day today and I think it was due to wearing my compression for 14 hours yesterday. I dont wear compression at night anymore as I was waking up with the same feelings, just yucky undefined irritation all over. I think I need to build up to that sort of timing, Ill ask my guy when he comes round next to do my leg.
@cookie54 I commiserate with your husband, that sciatica pain is just like REALLY you are going to show up NOW of all times when Im already in pain? Hope he can get it calmed down so he is more comfortable!
2nd Enhertu infusion tomorrow and probably Xgeva just to add to the fun time pain. Early infusion time so I hope to be home mid afternoon. Hate not being able to move well, there are no good places to wait at my hospital, nothing good to eat, and frankly the sitting area by the day room is honestly the best you can get for comfortable chairs. Just not for the four hours it takes to run my bloods and concoct my drugs :(
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Good evening sweet ladies. What soul bearing words, have been said here today (and many times thru the years). At times it can be so overwhelming to get thru each day. I see no silver lining in any of this, frankly I feel like an old rust bucket. I tremendously admire the nurses that work in oncology. It has to be a difficult and emotional job.
DD does a mac n cheese with broccoli. DH does a mac n cheese frozen dinner with shrimp in it. I think it's Marie Callendar brand. Gee all of your receipes sound good. Mara, you truly have some of the most imaginative meals though.
Watching Phillies baseball and eating a tastykake. MO appt. tomorrow, early and via telehealth. Rumor has it we will finally have a new MO in October. We haven't had an in house full time MO for a year now. Not a fan of telehealth.
In pockets for all your needs.
Laurel
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One of my peers in my local support group told me about the series "Take Me Out Feet First", which is about medical aid in dying. The fifth episode focuses on two women with MBC. It's intense and I'm going to watch the rest of the episodes later, but figured I'd start with the MBC women. It's on Amazon, if you're interested.
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Shanagirl, hope the injections went well.
Sondra in your pocket for the xgeva and enhertu infusions.
Irishlove, some of it comes from my brain, some from the facebook page cheap meal ideas and some from youtube.
sf cakes, if my treatments start failing, I would NOT switch to something else, simple reason is thereis no one here who can help, not interested in going longer. Prefer to go to hospice or look into dying with dignity. My family knows my wishes. Not depression, just realism.
Just having some rice and 3 eggs, needed something quick. Will add taco seasoning and cheez whiz to bind it. Got my own infusion of Herceptin, just have to get my face washed, little bb cream, blush and bronzer, look healthier that way, otherwise my skin looks a pale peach colour.
I hope everyone has a good day and in pockets for all who need me.
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Hello dear folks, it's so good to know you are all here and living life. This whole nightmare started right after I retired, but I am a hobbyist, so I always have something to keep me busy. Yes, cooking is grand! I take piano lessons because I think music is very good for the soul. I have a question about the site. As far as I can see, we can no longer view a history of comments by anyone here. I know that candy (I think) kept post-it notes to keep track, but I was used to clicking on a name, clicking on comments, and viewing the history of comments to refresh my aging memory. I contacted the mods a few days ago but never heard anything back. Would you prefer to have your comments hidden after a brief period of time? I can see why some might prefer that.
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I’ve watched the first two episodes. It is very moving. I honestly wish my state was one of the ten in the USA that it was legal in. It is a relief to know you’d have that option should it get really bad. I don’t want to suffer. Death to me and my view is all about loss. So many questions with no answers.
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Well, as usual, got super hungry after Herceptin. Was actually a quick appointment. Only watched a bit of the Deadpool and Wolverine move on one of my devices while waiting and receiving my drug. Since I was so hungry, ordered two happy meals to get fries, a choc meal and cheeseburgers. I also get yogurt too, may think of something to with that, not sure at this point.
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Was running errands today. Saw a person that I had not seen in a few years. She used to be the x-ray tech with my cancer scans. Her first words to me were "Candy, you are still alive!" Hahaha, I thought. She said she thought of me from time to time but didn't know if I was even still living. I guess you could take that a few ways. Life with MBC. What a strange world, that of Stage 4 cancer. We are on a different path for sure.
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@tougholdcrow - If you click on the poster's name, a pop-up show info about them, including a link to their comments.
ETA - I couldn't add the screen shot to this post, so it's in the next one. It's what you see after you click on the poster's name.
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@seeq thanks so much for responding to my ridiculously minor problem. When I click on your name, I can only see 29 comments, through July 7, out of 1,152. I can't even see my own comments past July 15. It's weird.
I don't think I could watch a show on death right now, and greatly respect those of you who can. That's courage.
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I'll be sure to wear something with deep pockets to fit you all in it in the morning. I'm pretty anxious to see doc tomorrow morning. I keep thinking my life will be on hold for the next year and I hardly do anything anyways.
My dear sister was sweet the other day. Very concerned. Just couldn't understand why I wasn't getting a second opinion. I haven't even gotten the first!. Tell me please. When do you decide to get a second opinion???
For me if the Dr doesn't sound sure of himself and I'm running out of options. I know he speaks with the tumor board every week. He's told me in the past when they haven't agreed. Isn't that like a second opinion?
Thank you everyone.
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Gailmary, I do believe tumour boards are where doctors get other opinions and permission on other treatments so they are a quasi second opinion. I do hope everything goes well on you appointment, jumping in your lending support and love.
Candy, we are still alive a lot of us, makes me chuckle inside when people see me with the wig on and body that is not emaciated like people seem to imagine cancer patients always are. I am glad you are here and as long as life and treatment are working for me, I am glad to be here.
Not sure what I want to do today, got the usual chores, budget boosting activities and finally have to sit and pay bills. Going to put the laundry in, just the regular machine. Might go to the mall on the regular bus between 9 and 2. Have to be able to get out myself and get over this idea I am going to fall out of the bus. I slide out the van when out with DB and don't fall, no reason to believe anything will happen in my case as his van stip is far higher than getting out of the front of the bus. If I don't make it to the van, do short marching sessions for the 5000 steps indoors, I will see what I feel like doing anyway. I must say, I did well sleeping, went to bed before 10 because I fell dead asleep in the evening and instead of doing something else, made my tea and fed the cats and off I went. I did watch a few videos on facebook but fell asleep quickly.
Was torn about what to have for food today, I am thinking for my morning meal having 1/2 cup black beans, chopping it in with shredded cheese and croutons. Adding another 1/2 cup of beefless ground as well. Microwave 90 seconds to 2 minutes, when it comes out of the microwave, putting cheez whiz and a generous amount of taco seasoning and a dollop of sour cream. Need to turn on the lower pipes again even through the immodium I take the first couple of days post Herceptin. I really do enjoy the black beans done up with cheese and croutons because it is like ground beef. Just takes the chopper, I do not have a food processor. Eggs can even be subbed into beans as well. If I am honest, I don't love eggs but see the need for the iron etc.
I hope everyone has a good day, in pockets for appointments or dealing with drug or other SE as well, as usual, this goes for everyone who needs or wants support and in my own pocket to get my own things done that I want to do.
I
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@candy-678 Yea I do get that surprised look from people I haven’t seen for a long time. What do they think you should look half dead and emaciated 🙄. When I’m lounging around the house, hair tied back no makeup, I look like hell but at least I’min my comfy clothes and don’t have to worry about icing myself up. I should force myself to go out more but I just don’t feel like it..Not into hobbies, or painting and cooking this week either.
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@gailmary I agree with Mara it's sort of another opinion but it depends what your looking for. Do you want another opinion from another facility or another MO there?
I sought out another opinion when I was diagnosed Stage IV. I was and am very happy with my MO but there was an MO in NY that specializes in TNBC. For me I just felt like I wanted to know what she would had to say and see if both doctors were on the same page. In the end the TNBC doc tweaked the plan for me just a little and my MO agreed. It helped me feel like I was advocating the best I could for myself. That's just something I felt would help me because I had heard of this doctor in NY and always wondered if I should go. You do you, whatever makes you feel comfortable is what you should do! Thinking of you and in your pocket for your appointment. Hugs
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I watched the fifth episode of that film feet first take me out. It’s a good thing for me to see real faces of women fighting this disease, that honestly do look like you and I. I’m not bone thin. My hair is more than halfway down my back. I actually could stand to loose 50 lbs and I’d be ok. These women were just like us people cut down in their lives. One was a mother of a 3.5 year old son. Broke my heart. Immediately I said a thankful out to the universe, that my kids weren’t in their high chairs with chubby fists and eating peas and carrots for lunch. They tried to explain cancer pain , which if I was asked what that was like. I wouldn’t be able to quantify it into words . For me in my bones, it feels like bugs are gnawing at my spine. The neuropathy is so bad I’m clumsy and my feet just don’t work like before. Listening to the way they describe it made me feel like I wasn’t alone and they were just as scared. It comes down to leaving my family. The only way I’m going to do that, is if I have to. Because death with dignity is not legal in my state. It was a moving thing to see.
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Good evening sweet ladies. Mel, I'm not sure I could watch that program without being overwhelmed. Young Mothers (as you already mentioned) would just break me. As for states not allowing MAID, I have my exit stage left plan in place. Stock piled something something if I can't get on a plane to friends condo in Oregon. You do not need to establish residency in Oregon in order to access the MAID program. By the way, the friend invited me and offered their assistance, sent me a book and other print outs on the subject, once I had shared my beliefs with the individual. Now mind you this is a fair weather plan, who knows when the time comes how it'll work out.
On a lighter note, watched the Phillies win again. Not sure if I'll watch the Eagles or Phillies tomorrow night. What a choice to have to make when they are both contenders to go all the way…
In pockets for all your needs.
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I am up with insomnia. Yuck! I’m laying here shopping for my daughters new place. She officially moved in a few weeks ago and I’m helping with the furniture and items she needs. She told me the other day I was spoiling her. I can’t help it. I’m so proud of her. Both of my kids are doing so well. It makes me happy. I told her. If anything should happen. You’re surrounded by things I bought for you!! I’ll be everywhere!! She said that made her happy. She found this absolutely adorable place. Bigger than anything I’ve seen for the money. Renting is sooo expensive for these young ones. It bugs me. They work so hard.
here’s a few photos of the work in progress! Sleep well ladies. Our ac/heating unit went two days ago. We had to have another installed today. I told my DH , we may as well bend over and take it! It was unbelievable to think that any little family now a days can shell out that kind of money. It’s almost criminal.. they will be here again tomorrow to replace the water heater as well, we are replacing everything. The house is 26 years old so lots have been done. Duct cleaning also. Poor Theo. Couldn’t relax all day long. He’s passed out next to my legs in bed. I love that lil guy! Good night. Round two to try to sleep.
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Mel Sorry about the insomnia and the HVAC units having to be replaced. Ugh yes everything is sooo expensive but at least you will be set for awhile. Ha the bend over and take it just cracked me up! Thanks for the giggle. Your DH place looks adorable, very comfy and cozy. Plus surrounded by you and all her favorite things is the best. We are at peace when our kids are set and happy❣️Awww poor Theo , we comfort them and they comfort us.
Irish Go Phils, hope this is the year! I just love this team,seems like a great group. Go Birds, football is my numero uno will be wearing my eagles gear today and watching tonight. Also I love that you were eating your Tastykake and watching the Phils the other night. I grew up with them and continue to buy them now for my family..delish!
Hubby still suffering here with the sciata his CT was yesterday and his back is a hot mess. Years of physical work really did a number on him. He has been dealing with issues for years and I hope this is not surgical. His heart failure issue makes everything a little more scary for sure. Taking him to PT later today for eval. Trying to keep myself together as I have my CT on Monday and I really need stable this time! You might think we are in our 80's and we are in our 50's. We lived a simple life, sometimes I just don't get it????
Hugs and strength to all my favorite ladies here❌⭕️
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Shana, I look pretty scary at home until, like uncle Fester until I put a wig on, short, blond with dark roots. I do grow my hair longer around my ears so it pokes through at the bottom and wear BB cream, blush and bronzer for some colour, bit of lipstick too. Don't want to me super made up but I feel better that way and only do it if going out.
Edited: I will see how I want to spend the day, have budget boosting and other activities. Laundry underway, couple loads. When I was paying my bills yesterday, noticed how much I spent on groceries and realized I need to curb my extra spending when with DB and SIL. It almost doubled the spending and I do not like that. Need to save the purchases that are not needed. I can pay it all but don't like to waste money on mostly junk food. I did cook up fish and an egg, added 1/2 cup of black beans, the fish and egg, put in croutons to make the texture I enjoy most. Chopped it up and put in microwave for a minute, added some mayo and ketchup to bind, salted and it was a damn fine breakfast meal for me. Also looking to use up the chocolate milks I got from McD's when I ordered a couple happy meals. Next time I save money up, will just purchase one for delivery next time I earn enough for that. Cheaper than the value items I purchased and pretty good. I did have to put away half the breakfast, so will use it later, may just spread out on a tortilla with garlic spread on first, add some cheese qhiz and leftover breakfast mix today and shred cheese on top. I think that sounds good to me.
I hope everyone has a good day and in pockets for everyone who needs me.
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omg don’t get me started on fester. I think Mae made me bust a gut when she posted a hilarious comparison joke ! Maybe she’ll post it again. Such great humor!
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My dr has told me before when the tumor board did not agree with him. I'm not looking for another opinion now. But when I'm told your out of options. God forbid a MO would say there's nothing to help a TN besides old chemo. One would think these guys would work at keeping up to date.
A pet and mri next week so he can decide my chemo plan. Staying on faslodex for ER+. Does that mean I'll be extra tired.? I hope I don't loose all my energy.
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Things leveling out here I hope, got my second Enhertu on Wednesday and two bags of blood so I've got some pep in my step at least for the next few days. Thats a good thing because I need to eat while I can and get the house cleaned as my parents arrive next week for a month. Thankfully not staying at our place but will obviously entertain for dinner and whatever. I
My fathers back, knees, feet, hell just about everything is a hot mess too and now we can have father daughter cane races as we sort of walk the same now. I'm not sure my dad expected to be at 75 giving his 47 year old daughter cane height tips, but I guess to be a parent is to be one for life, whatever may come. Looking forward to absolutely spoiling them with a balls to the wall 50th anniversary dinner, though, and whatever else I can think of to make their visit special.
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Sometimes I think I am a horrible person anymore. My thoughts I have sometimes.
I was scrolling Facebook a minute ago and a Facebook friend posted about having an MRI this morning. Crazy how some people post EVERYTHING about their lives. Geesh. Anyway, this person is having new back issues- musculoskeletal- and had an MRI to see if it is a disc issue, etc. They got home from the MRI and posted how "awful" the MRI was. I guess they never had an MRI before. The noise, the close quarters, etc.
I immediately thought "I have an MRI every 3-4 months for the cancer" and I also had the thought of "and I am scared they are going to say the cancer is worse".
I just laughed to myself when reading this person's post about their experience with an MRI this morning. I did not comment on their post. But I had some crabby thoughts about it.
I just do not have much sympathy anymore for things that to me are pretty trivial. I don't say my thoughts. I just fume about them to myself. Except telling you all because you understand.
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I am sorry for those struggling with new treatments or just dealing with unpleasant SE or life in general. I woke up anxious and depressive today myself. My mind is obsessed with fears of not getting garbage out despite OT telling me to knock it down the stairs. I do realize, taking out of the back would be better. Knock bags down the steps and walk around to get them out, not sure why this is complicated for me but assuming that the lack of sleep was the most likely cause.
Made a meal that on paper should have been good, beefless ground and beans with chopped greens. chopped all with the croutons, had a nice beef texture. Heated in frypan with taco seasoning, cheez whiz as well and some sour cream when it came out. I ate about half and realized there was a bad undertaste to it. Went back over ingredients and did the sniff test on each, beefless ground had a slight smell so am blaming it and the greens. No more salad type stuff, sticking with basics that can be seasoned differently, does not look like I took a hit in the digestive system, just points out that I may need to consider putting half of the beefless ground in the freezer, just processed stuff through my Magic bullet and dumped down the drain followed by several rinses of hot water. No clogs and kill any bugs that may be hanging out, got a few of the little black bugs hanging around, not many but more than 0 is enough for me. Using apple cider and dishsoap traps to catch the stragglers as well.
Budget boosting activities and youtube fill the other part of my day as laundry completed earlier, may also watch a silly movie I enjoy, Kung Pow Enter the First, a movie so hilariously dumb that makes me cackle loudly and repeatedly. The star has inserted himself into an old kung fu movie and interact with the characters. Feeling like the laughing will make me feel less anxious. Going to buy a copy on youtube. Edit, it made me feel better and less depressed. I did laugh a lot and loudly. Now I can watch it anytime.
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@candy-678 I agree, but then I think back before I knew about all this mess and I am a different person now. Things that would have scared me or bothered me before are everyday occurrances now. People tell me I look good but all I can think of is how much better I could look. I don't like the FaceBook Stage IV group because all I see are complainers and sob stories, and instead on here we lift each other up, and cry for each other in the midst of our tears. We can whine here but know you all understand and empathasize with each other. There is a difference. I think the smaller group helps. You are not a horrible person—you are an informed person with feelings. Perhaps some friends stay away because I am not afraid to share things. Perhaps the friends that stay are true friends. Life has changed…
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Hello lovely ladies ❤️
I feel so understood when I post here, and like intolight said so well, we truly lift each other up. A little update: my tissue biopsy, after two whole weeks of no one knowing where it was or its status, was finally sent to Caris. It cost me a lot of follow-ups, but I took advantage of my MO visit to bring up the issue. He promised to follow up with the pathology department. He wasn’t aware of the delay or the dropped balls, but in the end, they said they are going to send it out, so I guess I have to believe it.
SFcackes, take me out series is definitely on my list, thanks for sharing it.
Mel, I'm sorry about the insomnia, I’m dealing with it too. How can we overcome it, even just a little? I can say I cherish everything I’ve received from my mother, both during her life and after her passing. I’m sure that what you’ve done for your daughter will leave pieces of your love to her, and both of you will cherish that for a long time.
Candy, you are not a horrible person. I also get mad at someone close to me who makes a huge deal out of nothing. Fun fact, she took a whole week off after visiting an ophthalmologist because the eye drops made her "uncomfortable"! She whined to everyone about how those drops made her life difficult, blah blah!
that mac and cheese recipes made me so hungry!!!
hugssss
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@intolight and @candy-678, I agree with you both. The group that post here are "can do" realists. We get on with life, while acknowledging the realities of our situation. None of seem to wallow in the predicament - we just get on and share funny stories and suggestions about how to deal with side effects and other things. I can't say how grateful I am to have found this site. Thank you to you all.❤️
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