My Husband, My Life, My Love, My Family, My Cancer
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Great news dutchiris.
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I hear this is Mel's living room. Like Myshadow, I'm an introvert but I could really use an outlet with others who understand what I'm going through.
I read Micmel's original post and it made me cry because I've had those same thoughts with my husband. I feel guilty for secretly not wanting him to find someone else after I'm gone. Of course I want him to be happy. He tells me he'll never find someone else but I think that's just to make me feel better.
On a completely different note, can someone tell me what "in your pocket" means? If it's in the thread, I haven't seen it yet. You all have been at this for a while, 800+pages, wow.
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Welcome Kris!
“In your pocket” is our support. Think of us as miniature people sitting in a pocket of clothing chatting, snacking and just being there with you during scans or waiting for results.
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moth - I'm sorry your dh is in th ER. Hopefully, they can get him on the right track and home soon.
Katyblu - hopefully you can carve out some "me time" every day while you have visitors. I think it's so much easier to deal with other people if you have a little private time with your own thoughts.
dutchiris- yay for stable scans!
Mara - thinking of you. You have great "self talk"
Mel - you used to take such pleasure in making and giving masks. Is there some other craft or sewing/service project that you could do? (e.g. lap quilts/blankets for nursing homes [esp. VA]) I had a friend that made little Christmas stocking all year for a charity children's Christmas party. She used remnants and fabric that was marked way down after the holidays. The kids loved them because they were all different. Just thinking...
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Morning all.
Welcome kris_2000. Feel free to chime in anytime. As illimae said, we do Pocket Duty here. We want to show each other our support for scans, appointments, waiting on results, starting new treatments, anything that us MBC ers have to face. I try to do a "pocket duty" list on Sundays for the upcoming week. That way all can come to that post (look for my post from the date of that Sunday-- for instance Dec 5 post for that upcoming week) and see the list for the week.
Woohoo dutchiris for the stable scans.
Mel like SeeQ said, maybe a sewing project you can get involved in. I wish I could do something like that. I cannot sew, or quilt, or cook, or any of that. If I could do those things I could do that in the safety of my home (Covid risks) and keep busy, and help others with my projects. You should try that. A sewing project for the VA, or Nursing Homes, or Children's Hospitals, etc.
Here is the "pocket duty" list for the week of Dec 6. Any more just let me know and I will add.
Katyblu- Cardiologist Monday Dec 6, Palliative Care Tues Dec 7, Zometa and Lupron shots Wed Dec 8
Tanya-- PET Tues Dec 7
Rosie- MRI Wed Dec 8
Sunshine99-- MO appt Wed Dec 8
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Saw this on Facebook. So true....
I think of me and my cat (except he is white, not black). Today is rainy and I was sitting by my window and thinking and wishing and remembering.
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See Q, thank you. I do my best to remind myself of common sense things in my head that I may not always think of when upset. Like the property stuff. I can't change what will happen, it will certainly be a while before moving is even on the table and more neighbours have said they won't go. I went on a long walk to pick up a couple of beef patties and to a grocery store for a nice 4 mile walk. Bumped into my neighbour next door, very sweet older man. Always trying to give me stuff, he actually had the card of one of my old social workers, may try calling her and asking how I can get a referral for her services, ie talking and knowing where to send me for affordable housing support as well. He let me in his apartment and I can see that the building was obviously renovating other apartments like mine about 3 years ago. He has carpet and a very strange set up for a kitchen that makes mine look good. Very kind fellow and was happy to hear he is not planning to make it easy for them to boot him. He is also very smart and actually has a social worker that is the same one I had. First when I was diagnosed with the brain met and then when my Mom started getting sick as well and after her death. She should be able to direct me on getting a referral to someone for talking to.
The older fellow also gave me cookies and a cane. I don't need the cane at this point but promised to use it on the new property manager, joking of course.
The walk was good, 4 miles since I stopped at the burger joint near me for a couple of beef patties. Have gift cards to use up from there and then walked a longer way to a cheaper grocery store and then home. Took me a while but like I still don't tire out. When I was visiting my neighbour, sat on one of his couches, very low to the ground. I could not get enough momentum to get up. Had to do if front on my knees and use my arms to help my legs lift me. I am sure it is partly my age and weight but I do think cancer factors in there. I do squats but obviously need more sit to stand and getting up the way I did. Very chilly with the wind, my cheeks were rosy but not from the heat. Better day overall.
Tanya, Rosie and Sunshine, I will be in your pockets with what ever snacks you might need or music you like.
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Good afternoon everyone! I hope everyone’s weekend is going okay. Mine is…. entertaining I guess. My visitors mean we’ll but man, I feel like it’s like herding cats but without all the floofiness.
SeeQ - Yeah I think I’ll have to have some “me time”. And I’m definitely going to work for at least a few hours every day. So hopefully that’ll give me a break.
Candy - I have my first appointment with the cardiologist on Monday. Hopefully we can figure out why my heart rate is so high. Then Tuesday I have a palliative care face-to-face appointment. And finally, Wednesday is my Zometa infusion, Lupron shot, and start of cycle 4 on Ibrance. Not sure why I thought it was a good idea to line these all up together. Haha!
In your pockets Tanya, Rosie, and Sunshine!
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Hello Ladies ~ I hope everyone hada good weekend. Mine wasn't bad. I took a shortened nap Saturday I think the fatigue is giving ways a little and now I have to go back on it. That's the way it goes I guess.
I hope you're all doing at least ok and I'm sending out hugs and reporting for pocket duty tomorrow bright and early. Sleep tight !
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hi everyone, checking in to say dh is still in hospital. He feels ok but HR continues high. He doesn't seem to be responding to the meds so they're keeping him for now to monitor.
I'm fine. Going to have dinner now & watch a hallmark 😊
Hugs everyone
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Jumping in Tanya, Rosie and Sunshine’s pocket and I’ll hopefully see some of you on the zoom tomorrow.
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I'll be there in everyone's pocket this week, a quiet week for me, bloods and chemo on Friday and hopefully spending some time with Finn on the weekend. Moth, how is dh going and Katyblu I hope they can figure out why your heart rate is so high, mine was due to pneumonitis and eventually settled on its own but it took a couple of months. Good to see you back out walking Mara, hopefully you can get in touch with the social worker and she can be helpful for what you're going through.
Waving hi to everyone, try to have the very best week possible 😊.
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signing up for pocket duty - Tanya, Rosie, Sunshine.
I have labs on Friday - last anything before I get established at our new place
Great news is that we closed on the house we were selling - finally. Yaaay! We had a few delays due to waiting for appraisals and the lender's idiosyncrasies, but it's finally done.
Waving to everyone!
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Could use some pocket duty today. I start a new regimen of Tukysa, Xeloda and Kanjinti (biosimilar of Herceptin). Already swallowed AM dose of Tukysa and Xeloda. IV dose of Kanjinti at cancer center at 10. Nervous about possibility of side effects but also about whether this will work better than Ibrance for me. Thanks, Jan
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Reporting for pocket duty for Tanya, Rosie, Sunshine, SeeQ, MoCoGram, Elderberry (results) and anyone else that I have missed. Bringing Christmas cookies and fudge.
Thanks for the pocket duty the week of Thanksgiving when I had my bone and CT scans. I got the results last Wednesday and I remain NEAD! Next scans in 6 months. I have been too tired to get on here to do anything but try to catch up lately. Possibly the last week of my Ibrance cycle really got me this time in addition to travel to one of my brothers for a few days at Thanksgiving.
Moth - I sure hope that DH gets better.
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MoCoGram,
Good luck on your new treatments starting today. Fingers crossed that it works well and that your side effects are manageable.
I, too, have ILC, and am currently on xeloda (7 on/7 off) and neratinib (very low doses of each). I have two Erbb2 mutations, but I am HER2-, as you show in your history. I am curious as to how/why you ended up on the drug combo that you are on. My oncologist is talking about enhertu as the next treatment, on the theory that I am technically HER2 low with these mutations. Thanks for any info you can provide.
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congrats. Cowgal!!!!!! Atta girl. Happy for you.
Good luck on your new medicine MoCo! Hope it's mild
Nice to see you BevJen hope you're doing well..
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MoCoGram- Pocket duty that your side effects will be minimal and easy.
Cowgal- Woohoo on NEAD !!!!! And the cookies and fudge sound delicious !!! Wish you could pass them around the table in Mel's Living Room. I would be enjoying them. My nausea is better from the dose change of my treatment and I love sweets.
Talked with my Pastor's wife today. She found a lump. They are doing a biopsy Jan 5. She has a history of uterine cancer (years ago) and her sister has had breast cancer. Pastor is retiring the first of the year. What a thing to retire to. Praying it is benign, but I can tell she is scared.
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Candy ~ I'm sorry. Everything about cancer is scary. We get it. I'm hoping it's Benign as well. Sending hugs ..
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Candy, hoping that your Pastor's wife has a benign condition as well.
I am in everyone's pocket today who needs it and good luck on your drug regimen MoCoGram.
Sitting on my butt today which is fine with me. Slept weird because I slept a couple of hours in the evening so was up til 3 am last night. Not tired but not feeling the walking today. Not feeling too bad emotionally either for a change so I'll take it. Maybe some of my not worrying about stuff I cannot change is taking effect finally.
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BevJen, a recent Caris report found I am AR positive and have an ERBB2 mutation. As I understand it, I am still ER +, but now HER2 +. Which, I think is the reason Ibrance did not work. I should change my HER2 status.
Hope you are doing well.
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Hi friends - quick update. Went to ER last Sunday. Waited 14 hours to be seen as no beds were available. Went in with 102.5 fever and chills. Dx with sepsis - found strep on blood culture. Then right shoulder totally froze - severe pain could not move right arm at all. Started on IV antibiotics immediately. Had MRI - thought my bursa had leaked. Then had aspiration of shoulder fluid which ended up negative. Infectious Disease doc decided to run C Reactive Protein. My test in February was 0.4. This test was 92.4 which he felt was indicative of arthritic sepsis of the shoulder. Had PICC line inserted, need 28 days of IV antibiotics. Was discharged Friday evening. Stayed in the ER until Thursday evening before getting a private room for 1 nite. All due to nursing shortage. Almost all RNs were traveling. Sad state of affairs for health care in general. I’m sure this scenario is repeated across the country. Major problem is keeping shoulder pain under control. 3 infusions down, 25 more to go
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Goldens! I am right there with you. After going to the cancer center's ER because of shaking chills and a high fever, I spent two nights in the hospital on IV antibiotics while they zeroed in on the bacterium. Now I a m doing month of IV antibiotics at home. My port was infected. The home nurse (it was hard to get one) gave DH and me a refresher course and now it is DIY. I'd rather do it that way with covid about.
MoCoGram, your profile says Her2+. Is the cancer Her2 amplified aka Her2 positive, or is it Her2 negative and Her2 (ERBB2) mutated? I will start talking to you about neratinib if you say Mutated. Bev may as well!
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Goldens ~Omg you sweet woman. I’mSo sorry this is happening. Please rest up and try to stay ahead of the pain If you can. I am sending thoughts to you for a quick recovery.
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Wow, Goldens, you've been through the wringer. I'm glad you were hospitalized through the shoulder dx, even if it was mostly in the ER. I hope the antibiotics take hold soon and your pain level starts improving. 🌺
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Hi Goldens, oh no, that sounds awful. I hope the abx kick in quickly and help relieve the pain.
Shetland, are you feeling a bit better now?
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Wow Goldens !!! Good grief!!! What causes septic arthritis? I have so many ortho issues, latest is severe right hip pain with an effusion. Was told to do an aspiration, but I did not do it. I do not have fevers though. I wonder how it gets to the point of sepsis. My white counts are low due to the treatment I am on, so I worry about things getting to the point of infection. The nursing shortages and bed shortages are a real issue now. I know our local hospital is horribly busy.
Shetland- I would want to do it myself too, so the Home Health nurses coming into the home are limited. Too many Covid, and other, germs out there. I wish I could do PT, but I hate to go to the clinic to do it, due to germ factor.
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Moth, I hardly know if I am feeling better. Like so many of us here, I have more than one issue going on: Cancer, surgery, port infection, anemia, and underweight is kind of a lot at once, plus a situation in the extended family. My focus is on eating, getting the daily IV antibiotic infusion accomplished, and getting outside to boost my mood. Can't start a new treatment until the two weeks of antibiotics are done.
How terrible for moth's DH to be stuck in the hospital with this afib! Sending good vibes in a very regular rhythm.
Did someone say holidays? Hoping my young friends will get in the mood to put up lights on the house, as I really enjoy them. That and a tree inside. That's all I want for Christmas. Well, ok, there are these gel fruit candies that have no fiber and I have asked for some of those.
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Catching up. Everyone has so many issues -- all at once. It is just plain lousy. I have never heard of arthritic sepsis. I keep learning new things that I wish didn't exist.
Had my bone scan. It came back "indeterminate" I am still an enigma. I get a X-Ray on Dec 14 but honestly I do not expect a Big Reveal but Dr S has run every other tests with no answers.
Ready for pocket duty for any one with stuff coming up.
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Elderberry, this is where I would start looking for papers in medical journals and emailing authors who might know something.
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