My Husband, My Life, My Love, My Family, My Cancer
Comments
-
I have never found a church that I felt like a part of things. It’s always so many people and I dont like sitting close to people either. I’ve always kinda did my own thing. Sometimes I get so down I question my faith. When I see everyone suffering around me. Makes me wonder. Would it make. Difference if I did go? damage is already done. I’d like the social end of things. But my body can’t sit in a wooden pew for an hour.
I got my nails done today. Took my pillow with me. Helped my back. I do a few things. Friday I’ll have my hair done.
I hope those who have fallen are doing ok. HVe we heard from kitty? I’m still adjusting to this format and feel I miss things. Rest well lovelies.. 💐💐0 -
I'd like to propose changing the name to this thread/room to Mel's Place.
I can't remember the name when I need to veg with like minded souls.
Feeling anxiety tonight. No particular reason. Just the usual family stuff and health stuff. Thought I'd catch up with everyone here. I tend to lurk. Its an effort to write sometimes. You all give m.e hope that I'll be able to cope better as time goes on.
I go to church regularly. I feel like a hypocrite though. It makes me feel better for going and I believe, just not all they preach. DH wouldnt dream of changing churches. New priests just starting. Will be interested to see how they make me feel. Maybe I should go pray. I'll try to be back
1 -
gailmary—- I like the name change proposal—- Mel's place—- sounds good.
I have attended this church since I was 9 years old. Of course, a lot of the members are gone now, to Heaven or moved on to other places, and I don't know some of the people too well now. But I have always been a part of church— teaching Sunday School, VBS, singing in the choir, etc. Since the Pandemic when I stayed home, and since my diagnosis because I don't feel up to much activity now, things are different. Never to be the same. But… I still feel the pull to attend my church. To feel a part of something.
0 -
taking a gentle walk before acupuncture. It includes lots of benches in case I tire.
Have a nice day.
Tanya
1 -
Tanya, looks beautiful and benches are great as needed. Enjoy your walk.
I am cleaning house for PT visit and trying to figure out storage that gets stuff off the floor for me. I have added a couple of bags to my dryer rack that gets no use that hangs over my door with dry goods and reinforced it with some zip ties. . May also utilize some space in the closet and coopt my dresser to store things in, am thinking that getting a dresser and putting stuff in there would be better We will see. Living room is not too bad but bedroom is atrocious and there really is no stuff that I do not use.
I also was thinking about balance issues and realize that my feeling of leaning to the left could be due to a lack of a silicone breast form to add weight to the right side, order a pair of my size, will insert in the breast for pockets and see what happens. Original one start oozing when the outside began disintegrating. They come tomorrow. Not terribly expensive either. Can make room in my budget as well.
0 -
I like the idea of "Mel's Place."
I, too, grew up attending church and church schools. DH and I were very active but when COVID and Stage IV hit at almost the exact same time, I quite going. They went virtual for a while and then back to in-person. There was one defiant group/family who would sit in the front row, hands raised during the singing who refused to wear masks. They might as well as had their middle fingers raised. Requests to please wear a mask were refused. I gave up watching the service on You-Tube. It made me too angry.
DH is still involved and that family moved to Florida. I may return, but I'm in no hurry.
DH and I are going to visit a college girlfriend of mine this weekend and another friend is going to join us. DH made a piece of art for the friend and we're going to deliver it to her. Then in a couple of weeks we're going to visit my sister in St. George, Utah. I haven't seen her new home there, so I'm looking forward to it. My dad is going, too.
Not much else going on. Pouring rain a few minutes ago and now the sun is out - sort of. I see the neurologist at the end of the month and then have scans and appointment with my MO. I seem to be noticing more "little things" lately. I hope it's nothing…
Waving hi to everyone.
Carol
0 -
Hi Ladies. I’m here. Unfortunately, with the latest “upgrade” I find the site onerous to navigate and the readability non-existent. I honestly can’t think of a worse site which means I am logging in less and less frequently as I deal with the disease progression issues. It’s sad as this has been such a place of support in the past. I did make some suggestions but there haven’t been any changes based on my comments or others from what I have seen. Oh well.
Had a tough Monday with a lot of blood in my right nephrostomy tube. That resulted in a blockage, leaking urine from the back and two visits from the homecare nurse. Thankfully I was able to clear the blood clot which saved me a trip to the ER. I’m increasingly short of breath and have a lot of edema in my legs. My GP has prescribed a diuretic (started this morning and boy did it get the urine flowing!) to see if that will help with the breathing plus an inhaler. I didn’t think initially that fluid in the lungs was an issue asI’m not coughing but when I thought about it there is a possibility that it’s contributing. Just bending over to put on shoes or socks makes me puff! Trying looser compression stockings for my legs too. Of course I should stay off my feet with them elevated but there’s just too many things I want to get done. Still not good at sitting…
I’m sorry to hear about the tumbles people have been taking. Sending hugs to everyone and wishing you all lovely spring days ahead.
0 -
I am glad you got the clot cleared and are no longer leaking. That nephrostomy tube sounds like high maintenance so I hope it goes smoother and hope the diuretic has a positive effect on your lungs as well.
I am still getting used to stuff here as well. I have got the hang of getting where I want to go, click on my picture and select bookmarks and then can click on the page I want. I do appreciate faster loading but it was slow to get used to. I don't find myself really using the like things at the bottom, too much like facebook which I am quickly tiring of but that is another story.
0 -
@sf-cakes thank you for thinking of me. I have an appointment on 5/11 with my PCP and I may get sent back to the neurosurgeon. At this point I can't lay on my side or bend without a lot of pain and it's interfering with work and getting any kind of restful sleep. I'm open to options. As you said any pain relief is welcome.
Just got back from my Xgeva/Faslodex shots. I stopped by an estate sale on the way home. I don't usually buy a lot, I just like to look at the different homes. This one was a midcentury home with grape vines on an arching trellis as you come in the front door. It had an indoor pool with a big rock structure and a swing rope. Coolest thing I have ever seen! I did find a couple of old Corelle casserole dishes, the ones with the blue flowers on front and some nut crackers with the little prongs to dig the nut out. It was purely a sentimental purchase. I used to sit in my grandma's kitchen and crack open pecans from her neighbor's tree. She used them in baking a lot. Now I just buy them in the bag at Costco. LOL.
0 -
@sadiesservant I'm sorry you are struggling with the nephrostomy tubes it sounds like they are high maintenance. I wish there was an easier way for you, praying the diuretic helps. Agree I am not good at sitting still either!
@tanya_djamila Beautiful pic, glad you are out enjoying the view!
@mara51506 You sound like you are a great organizer and like to stay busy! Hope the PT is improving your strength.
@sunshine99 Sounds like a fun weekend, enjoy! For me everything seems to happen on the same weekend, house warming and a bridal shower this weekend. Other times I'm looking for something to do. Looking forward to getting out and the return of sun by the weekend!
@emac877 Sounds like a cool little adventure browsing old homes. I can picture those old Corelle dishes, great memories! I've been browsing the thrift stores lately to look and see if I can find any old treasures. Nothing exciting lately but it kills some time in the day if I have nothing going on.
Hi to all and sorry if I missed anyone, always thinking of everyone here.
0 -
Pat (SadiesServant),
Do you use this site from your phone or a computer? I use my desktop computer and have found the upgrades to be good-it's easy to read and navigate but I know not everyone has that option. I would hate for you to stop posting because naturally we are concerned about you and want to be of support. Hope that the diuretic is helpful. Would it be worth getting thorocentesis again or even the dreaded pleurex catheter? You probably feel like you have enough tubes to deal with but breathing is so essential to everything else we try to do. Wishing you well. Thinking of Emac, Dodgersgirls, Goldens, and others with particular challenges right now.
0 -
you’re all such wonderful ladies. The support is wonderful. I’m sitting here in awe of the way we are with each other. You are all very special.
1 -
@sfcakes
In your pocket for the vertebroplasty. Saw the orthopedic doctor today about the lesion on T8 and whether radiating it would help the bilateral back pain I'm having. MRI shows no fractures, but I'm sure it's just a matter of time.
Please keep us posted as the procedure gets closer. One of your doctors should be able to prescribe anti-anxiety meds to help. I don't understand why they don't volunteer to do everything possible to make these things easier on us.
Prayers and super gentle hugs,
Eleanora
0 -
Hi Chicagoan. Sitting down at a computer is not going to work for me as my time on the site is when I get my legs elevated. I’m typically on my iPad which has always been my “go to” for BCO. As my health declines I’ll need access through portable technology even more. I remain hopeful that some of this can be improved.
With regards to the lungs, I don’t think I have a lot of fluid. Last scan they talked about general edema. My poor legs and feet are so swollen, I have some fluid in my belly and a small amount of fluid in my left lung (this is new). I’m sure the fluid is adding to the breathing troubles but the bigger issue is the cancer spreading through the lymphatic system in my right lung. As with everything, a bit complicated but appreciate the suggestions.
Totally didn’t manage to stay off my feet today! My toes are aching from the pressure. Tonight will require elevation!
0 -
Hi @sadiesservant,
We apologize for the difficult you are experiencing in navigating. The tech team is working on resolving technical issues at the moment since the migration. We do appreciate all of the suggestions you and others have shared with us, and they will be reviewed once the most important technical issues have been resolved.
There is certainly a learning curve whenever a change is implemented, but we're always available via private message if you have any questions on navigating or using different functions. I know that @illinoislady had some difficulty at first and has quickly become a pro!
Separately, I don't know if it would be of interest to you, but we do hold weekly virtual meet-ups over Zoom where members can discuss their experiences with MBC. The MBC groups are on Mondays at 2pm EST, Tuesdays at 8:30pm EST and Wednesdays at 4pm EST. You can find the registration links here: https://www.breastcancer.org/community/virtual-meetups#section-do-you-have-metastatic-breast-cancer-mbc-also-called-stage-iv
It might be a good alternative as you learn to use the new platform!
Warmly,
The Mods0 -
Hello ladies~ I hope tonight finds you at least ok. Sadie, I’m sorry you’re having issues with your legs snd feet swelling. Definitely Keep them elevated! I hope all you’re going through calms down for you. I’ll be thinking of you for sure.
hello emac. Elenora. Tanya,Goldens ,living,sunshine,cookie,Mara ,Candy, gailmary,Sfcakes, Chicagoan and any lurkers. Wren, and others. Don’t be lurkers. Come see us! Hugs to all0 -
I will say I am learning a lot from the PT person. She added some extra exercises and though I thought I was doing them correctly, the technique she showed exercises different muscles in my hips. She'll be back in 4 weeks and hopefully there will be more progress quicker. I will probably add some treadmill work for the longer stride but I am encouraged.
Walking was pretty good around the mall with DB and SIL. He did put in my AC as requested so that will be nice, I like it cold at night and keep it a bit warmer, use strong fan to cool living room.
1 -
LivingIVLife- I'm glad you're feeling good enough to start moving around again.
SF-Cakes- I hope the vertebroplasty is smooth and successful and brings you pain relief. When do you go? (I'm sorry if you already said)
It's good to see you, Cookie and Eleanora.
SondraF - the coronation want even on my radar - I'm sure it measures Eberhard a big mess. I had to laugh when you said your cat was in a mood and worry let you write.
Tanya - the best thing about a colonoscopy is having it behind you (sorry, bad pun) I'm glad you got good results, pending that pesky biopsy.
Candy - I'm so glad you had a chance to get out and be social on your own terms. It has to lift your spirits.
Wait, this was way cool - I've been drafting my post on one page, saved a draft (and copied it, just in case) before loading the next page and the whole thing was there on the next page! That was always the hardest part about the old platform - only a few posts on a page, and trying to copy/paste my in-work post on each page.
Sadiesservant- I hate it that you're having trouble with the site. I use an android tablet in portrait mode. I hope it's just a matter of a small learning: curve. I also hate it that you are feeling so uncomfortable. Sending gentle hugs.
Mara - it sounds like the PT will be a good thing for you, and I have no doubt you'll work hard enough at it to make it pay off. Hurray for your DB putting in the A/C unit for you!
We had a little frustration getting DH's glasses yesterday. The doc was great, but the tech handling the order would not listen to me about the insurance. About 20 minutes after we left, we got a call that basically said, "Oops! You were right!"
We finally got a little rain here. We need a lot more to fill up our lake before the hot and dry weather gets here, but it rained!
Waving hello to all I didn't mention - so happy to see you all
0 -
@emac877 I used to love an estate sale, got so many cool things from them but the best was always wandering around the house and thinking how I would remodel :) The shine kinda went off them when we moved to Minnesota - it was oddly super competitive and not as charmingly (respectfully?) dealt with as my go-to estate sale ladies in Wisconsin. All of a sudden it felt rather tawdry and locust like.
@mara51506 sounds like you and I are rehabbing the same hip :P Even two days of working on the gait (tube platforms are great for this Ive found) its feeling a lot better.
Coronation is in full swing here, I went down the Mall yesterday to check things out and took some photos of the people camping out, the flags, some Kings bodyguards chatting to people, soldiers practicing with the big hats on but in their khaki utilities, etc. I have to go to the hospital here in an hour for the liquid biopsy blood draw and there are supposedly announcements on the Tube today and tomorrow by the K&QC to mind the gap lol. People are excited even if they try to look like they aren't.
1 -
@mara
Glad the PT is helping. Not all of the therapists are skilled and good at communicating. Happy you have found one who is.
@seeq
Nice to see that standing your ground with the eyeglass store was successful. It seems that I have to advocate, sometimes strenuously, with many of the people I come into contact with while trying to deal with medical services.
@sondraf
It must be so much fun to be right there for the coronation festivities. London is my favorite city to visit. I'm sad that Stage IV might mean I'll never see it again. Good luck with the liquid biopsy. I've seen the term before but don't know much about it. What does your MO hope to learn from it?
@sadiesservant
Good to see your comments. Sounds like you are still striving to find the small joys in the middle of mess, which is all most of us can do. Hope the mods fix things to make it easier for you.
@micmel
I have been trying to figure out why the suggestion to re-name this thread "Mel's Place" struck a chord with me and instantly made me think of you as a burly, balding man with tattoos. (sorry) Wasn't "Mel's Diner" the location in the old sitcom "Alice"? It was a place with different characters where people went for sustenance and camraderie, and to have someone take care of them for a short time. Sounds like a good fit to me!
Blowing kisses to everyone 💋
Eleanora
1 -
@Eleanora, I hadn't thought about "Mel's Diner" when the suggestion for Mel's Place came up. Too funny. I liked that show (Alice). Good, clean humor. Probably not PC now, but what old show is?
Carol
0 -
Hi everyone, I'm do m e with WBR, and had a lovely few days with Beck and Finn, I see the radiation oncologist in 3 weeks to see how it went, I started chemo again yesterday and depending on blood work go again next Thursday. I'm still pretty unsteady on my feet so I'm sticking close to home and having patient transport take me to and from the hospital. So I'm in wait and see mode for now practising walking around the house to build up my strength. Hi and best wishes to everyone who is struggling right now I hope you all feel much better soon.
1 -
I am quite happy with the PT for sure. She is a bubbly lady as well and is really good at communicating. Some of the things are hard to do, not because it is too physically demanding but keeping my body still. Hip abducter, supposed put leg straight out without leaning, takes some concentration. 10 sit to stands in a row, who knew how much work that was but I like, still working on that. She was concerned because I showed how I march on the spot, she wants heel toe but I do that when walking outside so covered there, should start up on the treadmill again though, poor thing stares at me.
Long mall walk last night led to a LONG sleep, normally up around 7 or 8, 10am instead. Doing my normal moneymaking things to boost budget. Had enough earned for more free groceries last night too. The more I can make on survey sites etc, the more I can save money which is good as costs rise.
I am planning a walk while waiting for my breast forms from Amazon. Multitasking housework and meals as well as being more organized in time management as well. Breakfast is regular 1/4 cup white rice, chopped 1/2 cup black beans, some canned turkey and cheese. Adding wheat bran for fibre and to make the chopped stuff resemble almost ground beef. Will also add 1tsp of peanut butter I do not like to use it up, I cannot taste it but hate wasting food. One meal I would like to have a couple of onion rings and poached eggs. Also going to try make a quasi tortilla out of pancake mix but much thinner so I could put peanut butter and eat similar to bread. I did add chocolate milk to my pancake mix but the 2% turned it into cake which I think was not the most nutritious thing I could eat. Does lead me to believe I should look up desserts that can be made using pancake mix.
0 -
Hi everyone, I live in the UK and am getting ready for the coronation of King Charles tomorrow. I am not a royalist but love the pomp and pageantry ,so I will be pinned to my seat while watching the TV; no way have I the energy to go to London. [ I will probably be critical of some of the guests outfits too, but it wont get heard by anyone other than my husband and he is not interested in the least !] .
Mel, was it you who was painting by numbers ? The finished projects were so good, I have got a kit to try myself, fingers crossed mine is ok when completed.
I hope you all find something to enjoy this weekend.
0 -
Denny~ yes I love to paint by numbers. I have one that I’m working on now. It is relaxing and takes my mind off of somethings at times. I would love to see a pic When it’s done. I am a royal follower. I loved princess Diana. So I’m a little salty on the new king. But I also love all the pomp and circumstance that the royal events are known for. I hope it’s televised here I would love to see it. Enjoy your viewing and as always good to see you here.
0 -
kittycat, please keep us updated about your WBR. I may have to have that and am interested.
mel, we have a paint by numbers picture that a cousin gave us and it’s beautiful. I want to take it up. Where do you get your kits?Took me awhile to figure out how to log onto the new site. I had to change my user name for some reason.
0 -
AJ~ I order them from Amazon. They have a ton of choices and I am never short of ones that are good choices. Be careful of one’s that are in too small print those get you. My eyes aren’t what they used to be and that’s a big deal for me. Welcome to the room, you changed your name ? Maybe the mods could help You get your old one back?
0 -
Mel, I was AKJ but now AJ. No big deal. Thanks, I’ll look on Amazon!
0 -
@AJ Glad to hear you were able read about my experience in the past, message if any further questions as time goes on.
Editing to condense what I am saying.
Today, laundry, PT, increasing sit to stands by 1 per day, walk to grocery store, think my pancake mix got lost in DB van. Breakfast two poached eggs with ground canned turkey, mayo, steak and chicken seasoning, pretty good. Since I get hot, planning to put a cool and damp headscarf on my head under wig When it gets hot in summer, planning to use neck fan to cool off quicker at cancer centre, think that is better time to use it instead of the walk.
In everyone's pocket of course sending love and support and hope everyone has a decent weekend.
0 -
Morning Mara~sounds like a big breakfast, good for you. You need the energy with all you’re going to do! I caught a little bit of the King Charles coronation on tv this morning and then took a glorious bath. A hot bubbly bath. It was awesome. Now I’m relaxed and sitting with DH. I hope everyone has a good pain free weekend.
Kitty~good to see you sweetheart… hugs
0
