My Husband, My Life, My Love, My Family, My Cancer
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shana Well that really stinks , I hope you wake up tomorrow feeling better.. Ugh the crap everyone deals with just breaks my heart. Rest well tonight.
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Hi everyone and hope you are having a better night. In pockets for those with scans coming up and loved ones traveling for the holidays, too.
Our 44th wedding anniversary is on the 4th of July. The fireworks upset our dogs terribly. Minnie flips out and we have to wrap her in a blanket and crank up the tv. It wouldn't be too bad if it was just the scheduled shows, but neighbors set them off for 4 to 5 days. I can hear them now. It is so dry that we are also worried about fires this year.
Thank you everyone for the good wishes for my DH. Been a rough year for sure. Started doing lymph drainage exercises. Cut the dosage of Neurontin from 300 to 100 mg. I really need the stronger pain med, but I'm so dopey most of the day, even though I take the med at nighttime.
It is week 2 with severe head pressure. Still blaming it on MS, I hope. No visual distortion or falling. It's a worry for everyone with stage 4, so I try my best to stifle the fear. Due to having MS it's an added worry since thinking cancer could cross the blood brain barrier easier. There are lesions in my brain and spinal chord. I had hoped to connect with someone with MS here on the forum that could offer input.
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Irish
Can't offer any info on MS, but I did suffer weeks of skull pressure after 5 rounds of cyber knife radiation to a skull bone met last year. The radiation caused significant inflammation and there's nowhere for that to go in the skull. Walked like a drunk and was afraid to drive for weeks, but it eventually subsided with steroids. Does MS cause brain inflammation?
Hope you're able to find an innocuous reason and easy cure for your pressure.
I have none and CT scans on Wednesday, so my anxiety is beginning to ramp up and I'm searching for distractions. Upside is that I spent 5 hours yesterday cleaning the house!
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Shanagirl, I am sorry about you being unable to attend the Christmas in July party, would have been fun I am sure. I am hoping you start to feel better soon.
Sunshine, glad your dad got his full size refrigerator. Glad you are visiting with your sister, thank goodness for AC.
Chicagoan, I forgot about it being July 1st, I was checking on mall walking and it took a few minutes to realize that all stores were closed. Felt rather silly. It had been supposed to rain but the fireworks went off from what I could hear.
It is raining rather heavily so will stay in today. Doing my usual games/surveys. Laundry being done as well as a sweep and light vacuum. Debating bed sheets, has to fit between PT and marching. Going to start slowly on the treadmill as well. I need to get more confidence on there and I do hang onto the handle. I am able to right myself walking through the apartment when I get wobbly. I am also going to keep doing youtube exercises as well. We will see.
No idea what I want today food wise, I really liked the eggs and canned chicken cooked up in the sandwich maker and the english muffin made in the breville. Might do it again. I also have some box stuffing, I put them in containers since I can just put a bit in at a time, be a nice addition to beans.
Edited to add, decided to have some of the canned chicken chopped up with some of the soup noodles that I use together, going to add a generous amount of cheese and use some garlic, chicken and steak seasoning with some mayo as well. Just heat them up in the microwave and eat as is. Leave another bit for the cats as they have gotten used to their smoothies. Half package of the whiskas perfect portions, the canned chicken pieces and add little bit of water and run them through the magic bullet.
Another edit, the garlic seasoning, cheese, soup noodles and chicken were good. I think in future, going to keep dry soup noodles in containers and just pull out what is needed instead of them getting sticky in the fridge. I can also shrink the portions more effectively. My breakfast was quite delicious though I must say and soup noodles are hella cheap. I keep the seasoning bags too. I am not a soup person so I do not make soup out of them.
Weird dream last night, was dreaming about The Omen series of books and movies. Used to like them as a kid but in my dream I saved everyone and nothing bad happened. Silly the things we can dream about.
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Good Morning Happy Sunday everyone🥰I slept very soundly last night…finally, and I feel motivated today to do a little gardening and work on a painting today, now that my art room is cleaned up and organized. I always feel creative when I have an organized work area to do a painting. 🎨👩🎨🖼️ 😊💕
@nopink2019 I just wanted to mention that I fell asleep talking to God last night abou you and what you are going thru. I. Will be doing breathe prayers throughout the day for you. I was so saddened to read your post. I pray that you will find some relief from the horrible side effects of treatments, and you will have some comforting time in the coming days and weeks with your family while you are in Hospice. I hate this horrible disease and my heart hurts for you right now. …wishing you comfort and relief in the days ahead sista.🩵💙
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Waving HI to all. Sorry I am not mentioning anyone in particular. But I read all your posts, and hate it when you are struggling, and celebrate the good news that is posted.
I mentioned on here about a local friend that has MBC with recent new progression to her liver. She was put on Verzenio. We attend the same church. Today, after the service, someone came up to me and her and, addressing her, asking how she was doing on the new treatment (my friend calls it her new "chemo pill"). Then the person asked her how long she would be on it. I looked to her to hear her answer. She said "Oh, maybe a year". Being MBC myself, I could not stand there and perpetuate the misinformation. So I spoke up and said "until it quits working".
No wonder the public doesn't understand MBC. Scan/treat/repeat. That person that asked the question to my friend probably would have thought that after 1 year my friend would be done with treatment and be ok. If given the opportunity, I would have said "I was on Ibrance, the sister drug to Verzenio, for 4 years. It stopped working and we changed me to Lynparza. I have been on that drug for 1 1/2 years." But I did not go into that much detail.
I hope my friend is not upset with me for interjecting my comment that I did make. But maybe she is in denial, the same as her husband is.
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Candy - if your friend is interested, Verzenio has kept my liver mets in check for three years. I'm looking at possible progression now, but that has yet to be fully . determined
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shana So glad you feel better today! Hope you had a good day gardening and painting.
Mara It us funny how our dreams can feel so real and be bizarre at times. I rarely remember any of mine because I swear I never get into a good REM sleep.
Eleanora we’ll all be squeezed in your pockets this week for scan. Sending positive vibes your way.
Heading back down to go boating a couple days I think the smoke and weather are slowing improving.
Hope everyone has a restful evening.
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@eleanora Thanks for responding. I imagine that was a difficult 5 weeks. MS does cause inflammation. I do not have a neurologist, so I'm trying to deal with this on my own. Steroids sure do help, had IV Soludemrol. Strong stuff. Thinking if this doesn't shake out soon, I'll need to get a referral to a neuro. I've been using my GP with the understanding that if things go sideways, he could no longer help.
Hi everyone. Hope you are having a lovely night. Just sitting in my chair being quiet. Has anyone heard from sadiesservent? I also haven't seen illamae lately. All my prayers for those suffering and those about to scan.
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My thanks to all for your good wishes. The news is as bad as we could expect. The treatment plan is amended to palliative care. My heart breaks for her. For him. For all of us. WTF.
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Has anyone watched Firefly Lane on Netflix? Spoiler alerts coming…
I clicked on it a few weeks ago because I was intrigued about the storyline of lifelong friendship. Ultimately I don't think it's the best thing I've ever seen. It's really sappy in spots and the story line bounces back and forth a lot between when the two friends were friends in the 70s and as adults in the 90's so that gets a little disruptive. Ultimately, (and here's the spoiler) one friend ends up with inflammatory breast cancer and it metastasizes. She ultimately ends up passing away. So now I find myself here crying like it's my first time watching Steel Magnolias and I'm angry at myself for finishing it. Do you ever stick with a show you don't completely like just to see how the story ends? I just wish I'd called it quits in season 1. It was just triggering in a lot of ways.
Most of the time I think I'm pretty at peace with this diagnosis and all it entails but sometimes I just lose it a little. Anyway, to it's credit I felt like for once a show fairly accurately portrayed breast cancer. As well as media can without living it I guess. That's it. I guess I just didn't want to sit here and mull on it so I thought I'd say something here with people who get it and see who else was still up.
Mollyfish- I am heartbroken, for all of you. WTF indeed.
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@molliefish technically all of us MBC ladies are on palliative care - these drugs manage the disease for as long as possible and afford us a certain quality of life. Its hard to see palliative on notes but it doesnt mean hospice-level making you comfortable. Unless she was indeed referred to hospice in which case ignore this, but that didn't seem to be the case?
Also, things change over time. I was de novo as well and told no surgery at the time. Two years later they took it out due to local progression. Your friend may get to a point where that is the best course of action or the drugs take care of it for her. She may have an outsized response to the treatments - I mean look at some of the ladies in this chat alone. The shock will settle in time, trust us!
Trundling off to hospital in a few hours for an early monthly check up. Hoping the trains work this time. Was idly scrolling through the Daily Mail the other morning and turns out I had the same plastic surgeon as the Duchess of York, who thanked him publicly by name for her DIEP recon. Lol ah, no wonder there was a supplemental cost for him! Poor guy got his picture and a bit of his past raked up by the 'journos' but I imagine it will be good business in the end for him, surgeons seem to love publicity.
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Emac
I'm usually up at 5:30, just hadn't logged in yet. I read Firefly Lane years ago and agree with you that it was pretty sappy in parts - and that was before I had breast cancer. The author is a favorite of one of my close friends and she keeps trying to convince me to read more of her books and I keep refusing. I'm living this and come here everyday to read the stories of real women. I don't need fiction.
Molliefish
Sorry for your friend, but I agree with Sondraf's characterization of palliative care. It is something that should be available to all patients, even those without cancer.
Sondraf
Good luck with the trains and early check-up. Hoping for good news for you. I've always loved the Duchess of York. She continued to be her own woman despite the pressures of the "family".
Trying to stay calm in anticipation of my bone and CT scans on Wednesday. Hoping the weather on the east coast allows me to have several outdoor walks, as they are the most soothing activity I know.
Hope everyone has a good July 4th!
Eleanora
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emac I didn’t watch it but heard it was really good. I have had similar experiences with shows, Dead to Me was one of them. I did watch to the end but cried and definitely struck a chord with me. My DH stopped watching it with me because it was too close to reality. It’s tough for sure.
Yep agree we are all technically palliative care on different levels. Still can’t help but to be heartbroken for her and her family. I would think it must feel worse when your blindsided with stage IV, just all stinks!!!!
Sondraf in your pocket for smooth travels and a good appointment.
Think and pray for sadie and everyone daily❤️
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I have some bad news to relay:
I am Facebook friends with KittyKat, and her daughter posted this morning that KittyKat passed yesterday. I assume Sunday, since the time change (Australia).
May KittyKat Rest in Peace.
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This is very sad news, @candy-678. 😔
Thank you for letting us know of @kittykat9876's passing. May her memory be a blessing.
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oh no!!!! Not another sister loss. May she no longer be in pain or worrying about cancer anymore. I feel so sad. Rip kitty. 💔
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Rest in peace sweet kitty, no more suffering 🪽💔Another wonderful woman taken by this awful disease…
Thanks for letting us know.
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Candy, you did not do a bad thing and even if she was upset, they need to know that meds go as long as they are working, more or less than a year. You've done the right thing giving them the correct info, they can do what they want. You were also right to keep your own details vague until more details are needed as well.
Cookie, I wound up reading the last two Omen books yesterday, Omen IV and Omen V. Not great but short little page turners. Did not dream about them though.
Mollie, I am so sorry in your pocket for you and your friend as well. Tough to hear this kind of news.
Emac, it is normal to lose periodically and normal for the day to day to peaceful.
Candy, so sad about Kitty Kat. Such a lovely woman, loved hearing about her Finn. Condolences going out to family and friends here as well as at home. I was afraid of this with all the hospital stays and such.
I am afraid of the same thing for SadiesServant. I don't know her real name beyond Pat, it would be a miracle to hear from her but I am not feeling hopeful.
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Not too much happening here, some rain and thunderstorms, had some rain warnings but they calm down this week. Buses outside for sure when I have to go places. We're hitting hot and humid which is normal for us.
Decided to take the soup noodles I use instead of pasta and open up dry as I rarely use a whole packet, I can simply use the amount needed for my purposes and store them in airtight container. I find after a couple of days, the noodles stick together when in the refrigerator. I do the same with my stuffing mix which is usually put in beans etc. Yesterday I did eat a package of soup noodles garlic powder and shredded cheese, microwaved for 60 seconds. Added small amount of mayo with ranch mixed in to be the sauce, it was delicious. Probably do an egg sandwich sort of idea with minor beans and spinach made in the sandwich maker. Use some pancake mix to make more like an egg bite. I will figure out something savoury to put on top of the egg bread. Might put a minor of chicken I am working to use up, cats will get their own smoothies with chicken and whiskas wet food. They get excited to hear the magic bullet now. Other than that, PT, small bits of marching to add up to 60 minutes throughout the day are on my agenda, more if I want but that is it. This Thursday will be the CCAC person. I am going to stress that getting up after I fall is the main thing I am looking for in services. At this stage, I am not in need of housework, nursing visits etc. Need some PT that has someone watching me and giving tips on getting off the floor or ground. My other PT takes care of less risk of falling. I will hopefully hear about an MRI soon to rule out actual brain issues. That issue I am taking as a separate thing until I know for sure.
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Love and prayers for kittykat and her family.
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oh no, RIP kittykat. I know I’m behind but I thought she posted very recently. This sucks.
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Oh, how I hate this disease! RIP Kittykat! I'm so sorry for her family, except that her suffering is over.
Carol
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Candy
Thanks for sharing the news about KittyKat.
She will be missed by many.
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Oh no, I am sorry to hear about KittyKat! I also feel like we just heard from her a few days ago. I know she was having a hard time and I am glad for her that she is free from all of that now but it's heartbreaking whenever someone here passes.
Hugs to everyone. I know I don't know you personally but I feel like I do just the same. ❤️
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I too am saddened to lose KittyKat but her suffering is over. RIP sweet lady.
I fear the worst for Sadiesservant. 😢 I don’t think she has ever been offline for this long.
Hugs to everyone who could use a hug.
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Rest in Peace Sweet KittyKat. You will be missed.
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thank you my friends, you give me peace where often I can’t find it on my own. <3
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Oh I am so saddened to hear about Kittykats passing. I believe she posted very recently as she was trying to get home. I hope she made it. Love and prayers to her family. sigh
I wish that more people knew about pallative care and all it could offer. It's not available in my area. When I read about some posters who had pallative care that integrated different specialties into their care, it made so much sense. There's a Youtube brainhealth Dr. that I've been following. She constantly talks about the need to go to specialists, such as not just a general neurologist for say Parkinsons' but a Movement Disorder Specialist. I think our GP's could do a better job at recommending specialists, but it's up to us to advocate and sometimes we just don't know what would be more beneficial.
Also I'd like to pay tribute to Dr. Susan Love who passed yesterday. She was such a front line leader in breast care, advocating for lumpectomies back when mastectomies were the standard of care.. She passed from acute leukemia at the age of 76. I also appreciated that she had such great bedside mannerisms, talking and praying with women before surgery, back when male surgeons just walked in after the patient was sedated. And she championed gay rights, too. She pushed for funding that quadrupled from 1992 to 1994 and bought breast cancer research into the modern age.
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