My Husband, My Life, My Love, My Family, My Cancer
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drank my chalky raspberry solution and going to Rest early gotta be up earlier than usual. I’m going to be a monster because of no coffee until after. Ugh! Thanks again ladies.
Mods, seriously this platform isn’t great. It’s dull harder to use and even see what is going on. Hard to see when things are new. Why change the other one ?
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Candy, Thinking of you. Sorry about the very bad day yesterday and your feeling down in general. 🌺
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Micmel & Mods: I agree with horrible new look please restore old one!!!
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In your pocket for tomorrow, Mel! I'm right there with you on the coffee.
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Micmel, I’m jumping in for pocket duty too! Sorry everyone, I’m not caught up here, we got to the cabin Wednesday afternoon and have been busy prepping for hopefully final electrical work and clearing/cleaning up. Long day and I’m beat, goodnight friends.
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Just popping in for pocket duty for Mel.
Booboo - I'm excited for you. I don't know how you can do it and not be packed yet! Lol I'd be a mess!
Mae - woohoo! That sounds like real progress!
50sgirl- nice to hear from you. I hope the new chemo is not too hard on you.
My son's been up for a visit for a few days. I don't get to see him often, so making the most of every moment.
Waving to everyone else!
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Mel- Pocket duty for today.
Booboo- Happy you are getting things done. Good you got a good price on the sale of your house. Safe travels.
50'sgirl- Good to hear from you. I have at least heard of your new med, but I do not know anything about it. I need to read up on it, in case in may be in my future. Who knows. None of us knows what our MO's may come up with next.
Thanks to all your thoughts for me. I have posted before about feeling depressed. I had my first appointment (Zoom) yesterday with a new therapist. New therapy group I came upon that takes my insurance. Do not really have any first impressions, as the first appointment was really just a "get to know you" visit. We are scheduled again in 3 weeks.
I have my liver MRI Monday-- 2nd one since starting Lynparza. So I am anxious about it. Is the treatment still working? You all get it.
I also had words with my sister on Tuesday. Family dynamics. I have a dysfunctional family.
Today is supposed to be in the 60's and sunny, so that is good.
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thank you Candy. Just got home and having my coffee. It's behind me now. Thanks for the large pocket attendance! Wonderful ladies.
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I got this card in the mail a couple days ago. It’s definitely true for me. Pocket duty today for your results, Mel, and Monday for your MRI, Candy0 -
Candy-Good for you for finding a new therapist. I'm glad you'll have support in figuring out how to deal with some of the painful issues you are dealing with.
Mel-Glad your scans are over. Hoping for great results!
BooBoo-Good luck on your move!
Nice to see you 50'sGirl!
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Gkad it's over, Mel. Sitting in your pocket for results.
Candy-678, I'm sorry about your sister. I have a brother who I haven't spoken to since my mom died in 2009. I just couldn't take the stress of our relationship. I'm in your pocket as well for your testing
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mel, glad it's over and you can eat and drink as you like. Waiting with you for results.
Candy - you're taking such good steps and you keep trying even when it's hard & I want to cheer you because that's huge. On your pocket this weekend as you wait for Monday scans. I so want this drug to be your great thing
Happy moving booboo & nice to see you 50s girl!
Hugs everyone
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Candy, in your pocket for Monday's scan. I don't even speak with my sister. You're not alone with family dynamics. Hope your therapy works out well.
Booboo, good luck on your move!
Rosie- definitely describes my life lately.
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Mel- How long do you have to wait for results? I hope not too long.
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Sorry, I am not keeping up well. I am very frustrated by this site. I'm sure they've heard an earful already.
Mel, still in your pocket for results.
Candy - First appointments are always awkward. I hope the new therapist gives you some piece of mind. It's a hard step but I'm glad you are seeking out help and my empathy with your sister. I have a younger brother and while we get along for the most part he makes some poor decisions in life that have challenged the relationship the family has with him.
I'm doing better. Still navigating abnormally high fatigue levels. I see the MO on Tuesday so I hope to get some answers.
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Good morning ladies
I don't like the new site. Only facial avatars transferred over. Lots of waiting and loading and white space.
KBL Yes the study people told me that it takes a bit longer to get the referral money.
Booboo safe travels Monday. You must be excited. How are your puppies traveling?
Candy I hope your therapist is good.
Mel I hope you get the best results ever. Pocket duty with peppermint patties.
Mara feeling down is part of this sickness business. I found that sometimes the small things just set me off on an emotional day. I hope today is better for you. I plan to take some pain meds and do some replanting.
50's girl maybe your new medication can be adjusted? It sounds like everyone says it's horrible and then you have to take it. The doctors should be trying to give steroids, reduce dosage or something to make it more tolerable. Sending hugs.
I got my 4th booster Thursday. My intentions are to travel in a few weeks so we'll see how this goes.
Nice to see everyone Kikomoon, Moth Emac, Rosie24, Mae, Chicagoan, SeeQ, Santabarbarian, Goldens, and anyone I forgot.
Tanya
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Candy, I will be in your pocket on Monday. Will you have the results quickly or will you have to wait? I hope you know quickly. As far as Ixempra is concerned, it seems that it is not given very often. I am the only person at my cancer center who is currently taking it, and it seems that no one else on these boards is on it.
BooBoo, Two more days, woohoo! I am excited for you. I hope you are doing okay. So far Ixempra is treating me well. I am in the second cycle and feel good. I felt good on Cytoxin and methotrexate, too, but unfortunately I had major progression while taking it. Blood tests after the first cycle of Ixempra have been encouraging. so I am hoping for more time.
Mel, You are probably going crazy waiting for your scan results. I hope you don't have to wait too much longer. Have you started your painting? I am thinking of getting a set for myself. I really can't sit long enough to sew these days. It is way to early to think about gardening. Knitting isn't appealing to me right now. I used to do those coloring books when they were popular a few years ago. I haven't done paint by numbers for years. It could be fun.
Thank you to everyone who wished me luck with my new treatment. As we all know, all we can do is hope for the best.
My heart goes out to the people of Ukraine. My DIL is originally from Romania, and it is just to the west of Ukraine. She still has family members there. They feel confident that they are not in danger, especially since they are members of NATO, but the are very concerned for their neighbors.
I hope you are all having a good weekend. I also hope that this site is improved soon. I am sure people are working hard to fix things.
Lynne
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50'sgirl- I will get results on Monday. I have the scan at noon, and see MO at 3p. A bit of a wait, but that is ok. I will stay there, in my truck, during the wait. So I won't have to drive back there for another appointment another day. I am glad that during all your treatments you have felt pretty well and could still do things. I just feel yucky all the time. I did my 30 minute You Tube exercise video the other day because I was feeling ok. After, though, I felt awful. Waves of nausea. And the horrid fatigue. Not many days feeling good. The nausea/lack of appetite and the fatigue. I certainly do not feel well enough to travel (though I have never been a traveler, even when healthy). Today was warm in the 60's. I wanted to go outside and pick up some sticks and yard trash, but I just feel too icky to exert myself too much. Stomach rocky today.
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Candy, I am sorry if my post had the wrong tone. I know how difficult this disease is. I have edited out the sunshine and roses portion of my previous message. I apologize. I was simply thinking of how fortunate I have been to make it so long when others have not. My life has not been as easy as you might have assumed by that message. The past two years in particular have been challenging. It has been two years since my MO first suggested that it might be time for me to stop all treatment. That has happened three times since then. Two years ago I was in such bad shape that I could not attend my BIL’s funeral. I was devastated since we were close. My children all stopped by to see me on the way to the wake because they thought they might not see me again. Luckily my MO offered one more treatment and I tried it. I have at times experienced nausea. One nausea medication helped, but it also put me right to sleep. Needless to say, I switched. I know you worry about constipation. I have had that and treated it, but I was miserable. I also had terrible diarrhea from one treatment - 7 to 12 times a day. Two different prescription meds did not help, and I had to change treatment. One treatment caused such severe joint pain that I could not get up by myself, could not walk without a walker,could not hold eating utensils or grasp a toothbrush to brush my teeth. I was off that treatment for 6 weeks before things returned to normal. I am not telling you these things to get your sympathy, I just want you to understand that I know how difficult it is to live with mbc. I wish there was something I could do to help you. I do hope your scans are good tomorrow, but I wish your MO could help relieve those SEs.
Hugs and prayers from, Lynn
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50'sgirl- No !! You did not need to edit your post. We all have our own stories in how this MBC has affected us. You have every right to your story. I did not intend to imply that I was upset with your post. I was not comparing stories. I was just telling my story.
I don't understand this MBC at times. My last scans showed small shrinkage, and I hope this scan will do the same. Then I think "I am stable" so why can't I have some QOL? Live like I don't have cancer during the times the treatment is working. I have read on here of some that travel or do hobbies that are strenuous, like sports, hiking, etc. Yes, I have ortho joint issues that keep me inactive, but I feel nauseous and fatigued from the cancer treatment and that keeps me from feeling like doing the things I want to. I think of something I may want to do with friends, then talk myself out of the activity due to not wanting to be a Debbie Downer with them if I have to rest. And I don't want to be away from home if my stomach acts up or I feel the need to lay down. I want to be close to my home.
I am sorry to read of your struggles these past few years and all you have missed out on. I see your profile and all your lines of treatment. I don't know how I will fare as time goes on and I have progression after progression. That is another thing that worries me. I struggle with just the 1 progression I have had and I am only on my 2nd line of therapy !!!! How will I do mentally as things get worse?
Love you, my virtual friend.
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Pocket duty for the week of March 7----
Candy (me)- scans and MO Monday
Emac-- MO Tuesday
Mel- Getting her scan results
Booboo-- Her move
Anyone else?
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Here reporting for pocket duty. I am sending hugs to all of you.
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Pocket duty for all who need it.
Not doing too much today. I have a bra that keeps falling down the shoulder so took an old sock the same colour and sewed a small band to pull the straps toward each other. Just cut and sewed the sock and it gives enough pull that the strap does not fall down my shoulder and has enough stretch to be comfortable. I could have bought clips but am not wanting to spend extra when I have the materials here.
I also mixed a can of chili with a can of beans but kept the bean liquid in there as well. Combining the two things will add to several meals for a low cost. Thinking things like eggs and beans, couple spoonfuls of the beans, spinach added on top with a ground up hash brown patty. The beans and a small amount garlic bread as well. Also have purchased some poutine gravy, not making the actual poutine but in future might add a different dynamic to english muffin and egg. We will see.
I would walk but the winds are going about 100k, warnings about trees coming down etc and I do not wish to get hit. It is warm but it is also supposed get cold tomorrow. This is a bloated post but the site is down for me than it is up and takes so LONG to load. Makes this site almost unusable. Tried different browsers and they are no better. No matter if am using a computer or not.
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Pocket duty for Candy & Mel for scans/results, and emac's MO appt.
Booboo- I'm so excited for your move! I hope it all goes smoothly - logistically and emotionally. I'm sure it's hard, even though you are so much happier when you're with your family.
Mara - I've been thinking the same thing. The omg-slow page loads - that are not always successful - are so frustrating. Those of us here know the value of this site, so we endure. I don't think newcomers would do it, and they'll be missing out. I'm sure it will get better, but I wish the techies would hurry up and fix their $h!t. I feel bad for the mods, too, because they have to deal with all of it from both ends. I've been on a team (of non-tech people) that helped coordinate a major software change when I was still working and it was NO FUN!
Edited to undo autocorrect - emac's instead of emails
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It seems to be taking longer to try to get into the forum but hopefully the glitches will be fixed soon. !
It is snowing here with ice pellets to follow. My husband had to go away overnight. Nice to have time to myself but the dog got stuck out the back in a snow bank so I had to shovel my way to her to bring her back. Geez!
Booboo- safe travels and happy times ahead
On pocket duty for Candy, Mel,Emac and for anybody needing some extra company and comfort
Mae- I know you are busy but pace yourself.
Hugs to everyone 🤗
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Reporting for pocket duty with a box of delicious assorted fudge!
I raked an area for my small greenhouse, which will go up in a few weeks and did more insulation this morning. Tomorrow is errands, then resting up for the El Paso treatment day on Wednesday. Hello to all.
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Mae, that view is amazing! Do you have that from your house/cabin too?
Booboo, Good luck with your move. It’s great that your house sale went so well and DH is content in the new condo. I’m sure you’ve been packing and that may not be easy, or maybe it is. You and sisters must all be so ready to do this. 😊
Candy, Mel, Emac, in your pockets for results and MO visits.
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LivingIVLife- so sorry you had to dig your fur baby out of the snow bank.
Illimae - that is an awesome view. Part of me is jealous of your green house, and the other part isn't sure gardening is on my to do list this year.
I had a great visit with my son last week. He came up for a few days for my birthday! He is still hoping to be back in late spring/early summer to include better weather and boating. And it looks like my stepdaughter and family should be here next week for their spring break. Yay!! With my daughter being so close now, she can easily come up when her sibs are here with little or no time away from work. THIS is why we moved here!
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happy Sunday everyone, been reading along and reporting for pocket duty this week. It is finally patio dining weather here so been doing a bit of that. Tried a restaurant that is in an old house and only offers 2 entrees, 2 desserts, and one appetizer on the weekends. It was pretty good! And they had turkeys that escaped their pen and wandered out to us. Only in San Antonio.
It’s always something on my body that is not working well. Last week it was painful BM’s, as soon as I got that fixed, it’s painful big toes, and if it’s not one it’s the other! One I cannot even tell what the problem is. The nailbed is bleeding (what’s new?) and it hurts when I walk, but not when I push and pull on the toe/nail itself everywhich way. What is going on! I just want a whole weekwhere I can walk AND poop normal!
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I don't blame you Kikomoon. Hope everything settles down for you next week for both the walking, toe pain and BM issues.
I am a little frustrated with my friend I talk on the phone with. She was complaining that a friend of hers complains she wants to lose weight. That complaint is nothing abnormal. I pointed out her friend should feel good because she is more active getting a pool workout 5 days a week and that is progress, suggesting she could use smaller plates and fill a smaller portion that week. Reason I was a little frustrated with her was because, if you know all this stuff, why are you not trying to lose weight. You don't even care how you look or how heavy you are. This woman has seen me exactly twice and I don't spend everyday complaining about my own weight. I just accept myself as I am at any size. She also said well you never go outside and exercise. I said no. I prefer walking at home and do it outside when I have somewhere to go. I also like mall walking, did that this weekend. I am just chill about how I look, no point being negative, when I choose to lose weight, I will keep the walking and look into more strength and bodyweight moves to build more muscle. I just resent her saying well you don't try to lose weight so why offer advice.
I gently pointed out that although I am not worried or depressed about how I look, sounds like her friend is and was offering support. My friend places a lot of her self worth on how she looks. She looks nice and is smaller than she used to be. I would only want to lose weight for health reasons. I guess I should just get over it and stop thinking on it, just silly I guess.
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