My Husband, My Life, My Love, My Family, My Cancer
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Thanks everyone for telling me about the bone scan. I thought I had seen somewhere that there is a waiting period while the juice works its way wherever. Good to know about the thing right up next to my face though. I'll just keep my eyes shut.
Emac, I can identify with you and your brother. I have a sister, who I don't talk to anyways, not wanting to talk to me because I made a comment to my mom that I have to work with Stage IV, but she hasn't worked in years. Yeah, be mad at me sis. I care. I will really miss all the kind gestures she has made since I've been diagnosed (none).
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Hello living room you guys went crazy with posts this past few days. Lots to read.
Happy holidays for all those who celebrate Ramadhan Easter Passover or just peaceful days off. Chicagoan thanks for mentioning all the holidays.
Karenfize sorry to hear about your hospitalization and new developments. I'm not familiar with the numerous treatments out there now but hopefully your new treatment will knock those tumors and lesions out of you.
Mel I love that praying mantis. I figured you guys would be gentle with him and show him out. I don't like insects indoors but share hours with them outside in the garden and they don't bother me.
Sunshine yes the scan comes close to your face-yuk. Good idea to close your eyes I usually take meds with my scans and open my eyes unintentionally several times when it's right over my face not thinking it will be there that long.
I get a PET scan. I have to eat only protein no carbs/sugar the day before. Nothing to eat after a certain time commensurate with scan time 6 hours. When I arrive I'm injected with nuclear sugar and then sit in a chair and drink some think liquid, (flavored of course). I wait about a half hour or so. The scan itself isn't that long maybe 15-20 minutes. Afterwards I drink water water water and can't be around young kids or pregnant women for 24 hours.
Mara keep posting your cooking, laundry, cats, landlord drama and walking. You inspire us all. Your stories are a kind sharing of a glimpse of your life. I try to save money too. My husband drives miles to save a few cents on gas. There's something to be said for frugality in these tough economic times.
Elderberry wow your DH took quite a tumble. I know how a little time away is nice but ultimately we miss our husbands when they're not around. I do.
Kikomoon I'm in for pocket duty.
Runor your mother is quite a strong lady. I'm glad she looked at her work and saw that there was little difference. It's like pulling weeds. Your hens are cute not laying eggs until they see the competition!
Mae congratulations you're really almost done, done, done..
Emac family issues are the most hurtful. There are many on this thread who have shared their family breakups and it's helped with mine. Deep sigh. I usually try way longer than I should with the family crap.
Candy I hope all is well and you have some cool things planned for this long weekend.
TAke care all
Tanya
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KBL, I spoke with a local realtor, did a virtual walkthrough for offerpad and another virtual walkthrough for opendoor. All estimates were reasonable for the market and considering we’ve made no updates since we bought the house in 2005. I did a pros/cons breakdown and opendoor was the highest offer, least effort and quickest. We sacrificed some potential profit but the offer was high enough that the extra work and time to list traditionally just wasn’t worth it to us. So far it’s been very easy and almost entirely online (except unlocking our gate to let an exterior inspector into the yard), assuming the next week goes as planned, I’ll be completely satisfied with the progress.
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Mocogram, those are good ideas to look into for sure to get into my own interests. Thank you for the ideas.
Elizabeth, I am so sorry about what is going on with your brother. Having someone in the family who tells you they do not wish to speak to you is heartbreaking and can be like a death. In my family, I was the one who cut off a toxic brother but you better believe I grieved him as if he died. So for you possibly being faced with being cut off is terrible. Sending strength your way.
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I have a question for those of you in IV treatments or having to go in frequently for shots or whatever, how do you plan trips? I'm actually looking at doing some trips this summer but I don't know how to pick a date. It seems that whatever I pick is just a stab in the dark & it might mean missing a treatment or delaying it by a week or something.... do I just do that? I mean I can't even predict what treatment I'll be on then anyway...? I'm probably overthinking this lol
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Moth - I don't think my treatments are as extensive as yours. I get Xgeva and Faslodex injections every 28 days (ish). My MOs office is good to schedule me out for several months so I can plan around those and any scans. I'm not sure what would happen if I needed to be gone longer than a month. I haven't ever considered that because the need hasn't come up. I'd probably have to ask about risk/benefit of scheduling beyond my typical dose timing on those.
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Wow, this thread sure did take off in the past couple days! It’s great to have so much activity again. 😊
Karenfized, Nice to see you again! Sorry you’re having tough times. I hope your next treatment turns things around.
Runor, Echoing others—you’re a fabulous writer! Glad to have you pop in and say hello
Moth, I’m in the same boat with IV treatments. In my case we already have the dates. (We had a cruise cancelled due to Covid and chose vouchers over refund. Well, the vouchers expire at the end of 2022.). We leave at the end of August for 10 days, assuming I’m not in a medical crisis at that time. I’ll be bringing it up at my MO appt next week, just so he knows it’s ahead. I don’t even know if I’ll be on the same treatment by August. I think our MOs try pretty hard to accommodate QOL experiences. I’m a little worried about getting off my schedule but have hope that it’ll turn out ok. I hope your plans work out too. Maybe your MO would have some reassurance for you that he/she can tweak your treatment schedule when you have your plans set?
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Hello Mel and everyone:
I'd like to join your cool living room, I recognize many of your names from other threads, and since the "update" of this site, it seems my other favorite threads have gone largely quiet. I miss hearing about how folks are doing, and touching base, sharing life, pain and laughs, etc.
And the bone scan...I genuinely hate when the flat thingamabob is right in front of my nose. My dear sweet stage IV sister Rabbit (aka Samantha, RIP) posted a hilarious video months ago that I watched right before the scan started, and I was able to laugh during that part. I highly recommend it!
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welcome Sfcakes. Always room on the couch. Loving ladies with real caring feelings! So welcome welcome !
Love to all.
Sorry some people are jerks. Let those who don’t treat us well Take some time away. Stand up for yourself ! Toxic is no
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Thank you, Mae. It’s so awesome it’s working out. Please keep me posted.
sf-cakes, welcome. This is the place where a lot of us pop in and talk. We are so supportive of each other and have Mel to thank for this group.
Moth, I hope you get to go on trips and don’t have too many issues with treatment.
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Moth, I think you should go on your trips if you are feeling up to it. Unless you are missing many weeks of chemo in a row, I cannot see a problem if a treatment got pushed forward by a week or two. I have taken a day off a couple of times which put 6 weeks between Herceptins. Once because I was sick and then one because I totally forgot about it. In the end, we all need to balance our treatment needs along with personal needs and I think a trip should not be out of the question. You need time for you and your family. Obviously tell your MO about it, if he/she states you should not, ask what the difference of a week or two would mean medically and would it really set you behind. Helps make the decision easier.
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Moth, my MO has been willing to schedule around trips. QOL is very important. However, I did not travel during my first 6 months with weekly taxol. I now go in every three weeks and have managed to only delay or move up treatment by a day or two. Otherwise I get nervous but my MO has assured me It’s fine to delay if needed
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sf-cakes- welcome to Mel's couch. We do support each other in good times and difficult times.
Mae- hope all goes well with the house sale then off you go to the cabin surrounded by nature
Moth- I do hope you can work around your treatment schedule to enjoy a few trips. When I was on a chemo schedule many years ago my MO wasn't very accommodating to any plans I had made. I had to make last minute plans and changes to everything. Things hopefully have changed.
With my family although there is just my sister and I, we are very lucky to have a close relationship. Even with cousins etc we are very close. My husband had a falling out with his brother after their mom passed away. Now they are speaking but only infrequently. I'm a strong believer in karma and know the universe will put things in full circle.
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hello to SFCakes! Good to see you here!
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karenfizedbo - good to see you back so sorry to hear of your recent developments. Was the pain event due to the bone mets? I hope the new treatment plan pushes it back.
Runnergirl - about a year before I was dx'd, I had high LFTs on routine bloodwork. My gyn (who ordered the bloodworkfor me) said, then, that there could be a number of reasons LFTs could be elevated and to have it rechecked in 2 months. They were up and down for nearly a year before I was sent for a US, with a quick call back for an MRI. I was basically asymptomatic and had a nearly 12cm tumor and numerous smaller ones. At least in my case, I don't think the LFTs were a good indicator of mets.
Emac- I'm sorry you're having trouble with your brother. The fact that you had to set boundaries in the first place, and that it ticked him off so much sounds like an indication that he has bigger problems. I hope things get better in that regard.
Hi SFcakes - nice to see you here!
(edited for typos)
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SFcakes- Welcome. I visit several Threads, but this is my main Thread. Great group here.
Glad to see so many posts. I wish I was online when you all are active though. Looks like that would be 7-9pm my time. I am usually watching a Lifetime movie at that time. Then off to bed at 9pm. But I get caught up in the mornings and can comment then (12-14 hours after your posts, haha).
Not much here this weekend. My usual. Laundry (me too Mara). Light housekeeping. Reading.
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Good morning, everyone. Welcome, SF-Cakes! This is, indeed, a fun place to hang out.
moth, I've been thinking about you and hoping you can take that trip.
Carol
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I saw this in my "front yard" this morning.
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Well, I did something I hope I don't regret but I had to do it. The business with my phone friend mocking me was still on my mind. I felt I could not wait to tell her how I felt, how it hurt my feelings so I messaged her on Facebook and told her. I told her she does not need to respond and that if necessary, we can go back to check in calls. Need to find out from MO on Tuesday if I still need these since my overall health is pretty good. We will see. I would just rather not talk to a person who makes me feel bad.
I did have a good breakfast that will go through the day. Used up a fair bit of canned corn I had in the fridge, a smaller amount of pinto beans and chickpeas. Added generous amount of chopped frozen spinach on top and some spreadable garlic. It started out in a fry pan but that turned out to be too small so grabbed a baking pan and cooked it at 425 for less than 10 mins. Put garlic and parmesan seasoning on top with a little mayo to bind it up, this will be over 3 meals as there was quite a bit. I do love garlic.
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mara, good for you. I think there are times to let something go, and there are times to let someone know that their words were hurtful. I'm glad you let her know. Maybe she meant it or maybe she was just being thoughtless. Either way, I'm glad you communicated your feelings to her.
Yummy breakfast!
Carol
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karenfizedbo - I saw your progression comment on another thread and this one - man what a shock that must have been! Re: Navelbine - I checked Bestbird's Guide to MBC just now and very very limited information on it, although it looks like there is an oral tablet option in addition to IV version and I think (dont quote me on this) its in the same class of drug as Doxil. Did MO say why they wanted to jump to that so quickly and perhaps not something more "mainstream" IV chemo? Are they planning to biopsy any of the new masses or anything? I dont think you are anywhere near the end of the line of treatments but it seems a weird one to pull out of the hat. Perhaps a Macmillan nurse chat (even if its one via the main website) is in order?
Has anyone seen cure-ious around? I miss her knowledge and posting
My attempt to swim yesterday was a 2.5 hour roundtrip of failure. Walked to catch the bus only to be confronted with a scene at the roundabout of a massive car crash, with one of the cars completely missing the top bit. Road blocked off, traffic a giant mess, bus was 40 minutes late and then arrived packed to the gills. Very slow speed the six stops I needed, and I got off early due to the screaming infant in front of me and concerns of Covid. Walk to the pool another 10 minutes only to be confronted with the fact that it was 'family swim' and not lap swim because why update your app or website for Easter weekend?! Rather that risk the bus returning, I just walked it about 50 minutes home, but along the river so it was fairly pleasant and cool under the trees. But after doing minute timed squats at PT the day before, my legs were pretty tired yesterday and today!
Breaking all the rules tomorrow for Easter dinner with pulled pork sandwiches and coleslaw. Throwing it in the slow cooker and heading out to a movie. Although according to text from Partner, the grocery store stock had been decimated as people grabbed anything possible to throw on a grill with the fab weather. Surely not everyone wants a pork shoulder though!!
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Sondra- Looks like Cure-ious last posted on the Clinical Trials Thread a month ago, but last logged in 3 days ago. I know a lot of Threads I follow have not had many posters lately. This Thread is staying active----good.
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Carol, I checked my facebook messages and she did not take my comments well, she said she would ask me to be removed from her call list which is more than her right to do. I am relieved and not in a rush for another person. If someone else is added, will keep it professional and not establish any friendship. I do feel relieved and happy I spoke up for myself and she is probably relieved because you cannot come back from that. I also blocked her on facebook too. We don't need to run into each other.
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Sondra, thanks for that! Yes it was a shocker….I see my MO on Wed so will be asking ALL the questions. I think her thinking is to keep me on an oral - as you say Vinorelbine is available in capsule form - as I've been trying to stay out of the IV ward (my veins are just rubbish and I'm fighting to get a Port, which they say I can't have…bunkum). But I'm have the same issues in not being able to find anything other than the usual huge list of side effects.
I wish you luck getting supplies!
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Thank you all for the warm welcome ❤️
Thinking of and sending good energy to Moth and Karenfizedbo, and anyone else dealing with progression and treatment changes.
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Mara-Good riddance to that person. Sounds like she should not be in the business of wellness checks-with her personality but at least this is no longer your problem. It your family is so concerned that you need a nightly call, they could check in themselves (I know, I know) or you could maybe send a FB message at 9 pm every night to your brother saying all is well. I'm a little testy today with some family issues so forgive any snark.
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I think that is a great idea. I will mention this idea tomorrow when I see DB. Thank you Chicagoan. I would actually prefer that. I don't mind the idea of texting all is well or something like that. The phone friend reminded me of a polite version of my younger brother. A lot of the same behaviours that caused me to tell him he would no longer see him. Quite frankly, with what I said about how I felt, we could not have come back from that. I am a little sad but less sad that there is less toxicity in my life. Best for both of us. I will definitely tell older DB and SIL that I will text all is well and that is really all that should be needed. We don't even need a conversation, just a quick all is well. Love it.
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mara, I was hoping that she would see how unhelpful and hurtful her comment was. I agree that she is in the WRONG line of work!
Carol
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Chicagoan, I’m sorry to hear about your family struggles. I don’t know why, but holidays seem like they bring out heightened emotions with families. I hope it gets resolved, and you can have a Happy Easter.
Mara, I just can’t believe that anyone would be so rude to you. You are one of the sweetest, kindest people that I have met in these threads. I am so proud of you for speaking up. And your game plan to text your brother (Chicagoan gets points for that idea) is perfect. My mother used to have this plan with her neighbor to pull her curtains open each morning to ensure all was well. If she forgot, the neighbor would call her to make sure she was ok. I always thought that this was a good plan too
I wish all of my MBC sisters a wonderful Easter and Passover.
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Good idea for the message that "all is well". I call my brother each day. He is my Dad's main caregiver, as he lives with him too. So the "all is well" call can just be as little as "checking in, all is ok". That way he is checking in with me too-- to see if I am ok. If I don't do the check-in call he would call me to make sure I am ok.
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