My Husband, My Life, My Love, My Family, My Cancer
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I agree, people are stupid, get a cat as well.
Laurie, forgot to say good luck with the treatment, I love that we can change our minds if need be.
Candy, I hope they find a good solution to all the pain you deal with soon.
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Lee, thank you. I'm also glad we can go from palliative care to hospice and back again too. Who knows. This treatment could work for Lynne and me to give us lots of extra years. That would be really awesome.
Lynne, I'm waiting for my meds to arrive. I will be on the exact same regimen, so please let me know how you do.
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Candy,
I didn't mean to upset you with my comments about your orthopedic situation. It's just that I get so angry that some docs write us off because we have MBC. I think one of the best things that my current MO said to me was -- continue on with whatever you would normally do for your health. There's no reason to stop that because you have MBC.
My suggestion about inquiring where your MO is is because I'm assuming your cancer center is part of the larger Wash U Hospital where they would have all sorts of specialists, including oncologist orthopedists. Your MO would be able to steer you to those if you ever had any interest.
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Oh BevJen you did not upset me. Not at all. I do go to Siteman Cancer Center, part of Wash U and Barnes. I did ask my MO office once about an orthopedic oncologist. They told me they do not have one. I looked online at their website and it mentioned them, but seems more with bone cancers, like osteosarcomas. Not ortho things like lumbar fusions for disc issues, or hip surgery for normal wear and tear of cartilage---but in a cancer patient.
And the attitude is different with someone with MBC. For instance, I have a growth on my wrist-- my PCP said it is a ganglion cyst. If I was younger and in good health would he press me to have it removed? Maybe. But, with my MBC, blood thinners, low counts, and other pressing issues with the liver mets, he just lets it slide. And it is cosmetic issue and also hurts at times.
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Good morning Ladies! I am relatively new to the MBC world, just diagnosed in Aug 21. I was first dx at 36 in 2017 with stage IIIa and then they found bone mets through routine imagining for pain management. I am active duty military so this dx has been real tough for me, mentally and physically and career-wise. I am lucky in that my treatment has not cost me anything out-of-pocket. I'm negative for BRCA and no one in my family has history of any cancers. The good news is the military can't deny that my dx may be service related so I should be covered for life, however long that now is. I'm not as diligent as Sorella as I've only read the last 5 pages. But everyone's kindness and acceptance here has really meant a lot to me in these rough times. I hope to be able to bring as much happiness and comfort to our community as you ladies do day in and day out. I'm glad to have finally started posting in these forums and I hope everyone is having the best day they can!
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Welcome Katyblu to the Living Room as we call it.
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Hi Katyblu & Sorella! pull up a chair & grab the snacks & bevvies. This virtual living room is well stocked
Not much new here. My arm was xrayed again yesterday and the ortho surgeon is still happy with progress. One more xray next week and if it's ok then the next recheck will be 3 weeks & hopefully the cast will come off. My MO thought it wouldn't come off in 6 weeks due to delayed healing on chemo but the ortho thinks it might be ok.
I'm going to try driving today for the first time with the cast. It's just a short drive. I tried knitting a couple days ago but that hurt so I only made it one row.
I binged Rectify over the past few days and it's one of those shows that really stays with you so I'm still sort of there
kittykat - sorry to hear about the fevers. Wth. You don't need this...
Laurie & Lynne, fingers crossed for this treatment to work brilliantly for you!
hugs
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Welcome katyblu!
Having a good day here so far. I enjoyed a leisurely breakfast and coffee, got my car washed and vacuumed, had a haircut and now I’m relaxing.
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Katyblu & Sorella: Find a spot on the couch! All newbies are welcome.
moth: I have been remiss in wishing you a happy anniversary. I hope you managed to find something fun/nice to do in spite of Covid, your broken arm, MBC . Way to go on even attempting to knit in a cast.
Fingers crossed for all who have upcoming tests.
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Mae - woo woo - I had my car washed today & got a haircut too. Are we on the same wave length or what???
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Welcome Katyblu! I try and pack 3-4 boxes each day for our upcoming move. Hubs finally listened and is working on packing in the garage. He finds it hard to throw anything out. I just want to pitch. Windows are open and a beautiful breeze is coming through. Have a pumpkin candle burning. Smells sooo good
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Minus, it must be our self are day today, lol. The only thing left on my schedule is dinner and wine.
Goldens, I’m right here with you in the struggle to motivate DH’s and hoping mine will get back to packing tomorrow.
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Thank you for the welcome ladies! I’m all about snacks and happy to sit on the couch and just hang out. These forums have been a saving grace for me and it’s because of the community y’all have built. So thank you
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Raising my hand for another one who had their hair done today. I hadn’t been since June. Hair cut and color. Oooh, those grays were coming through, and my bangs were driving me nuts. And I bought some wine today and totally forgot to have a glass. I think the Xeloda is already messing with my memor. Lol
Sorella, welcome.
Katyblu, I’m so glad you’ve found the forum a place for support. I feel the same way. It’s an awesome group.
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I’ve got snacks for days, from a cheese, fruit, nuts plate to bags of chocolates, skittles or gummy bears. Cocktails too, I had a glass of Reisling while prepping dinner and darn it, I just finished the bottle! It was really good though, no regrets
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Welcome to the living room Katyblu….. I am so glad you found us. We are a close caring bunch of craziness sisters who found each other when we needed too. You won’t find a better , more supportive group than these ladies. I hope you’ll like it here. I’m sorry you’re dealing with MBC at all, but if you’ve got to deal. We’re here for you. Hugs to you for welcome
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Long-time lurker here, peeking around the corner into the living room. Flashbacks of junior high shy girl not knowing which lunch table to sit at……
But since Katyblu & Sorella were brave, I'm diving into the living room hoping to crowd-surf and rock out with you awesome ladies, hoping you don't let me fall on my face! Diagnosed de novo almost a year ago at age 40, first mammogram and mets in all the vitals. Such luck! I am grateful that I feel alright right now physically, considering.
Hoping to share in the pocket duty, as my own scanxiety is becoming almost too much to bear, and while there are people around me, I feel so alone in this predicament.I know you all understand.
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Kikomoon, I’m so glad you came in to post. I’m sorry you are here, but am so glad you felt comfortable enough. That’s what this topic does, it draws you in. Please check out the Zoom meetup thread as well, and if you ever feel comfortable enough to join, that would be great. Many of us there are de novo.
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Kikomoon, Katyblu,
Welcome one and all. It pains me so much to hear about so many young women like you who get this disease. I hope that you'll find comfort, love, kindness, and big time support here in what we call Mel's living room. If you've read through the pages, you'll see that we cover a variety of topics, so don't hesitate to throw it out there if you have questions.
Hugs from FL,
Boo
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Kikomoon~welcome to our zone where we lean on each other and support whenever we are able. Loving , strong beautiful women I’m honored to callfriends.
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Welcome Kikomoon.
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Kikomoon, welcome! I know you a bit from the brain mets thread but I didn’t know you were younger too (I was denovo at 41), looks like we’re on the same H,X,T combo as well. How’s that been going for you?
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Kikomoon, I echo what Mae said about knowing you a bit from the brain mets thread, welcome. We have whatever virtual food you may crave here and many pockets for us to inhabit when people are getting tests.
Sorella and Katyblu, welcome as well. You'll know me as the person talks and loves doing my laundry in my wee apartment and also as an avid walker too. I also enjoy helping people where I can with a kind word and empathy where needed. Everyone here is great and supportive.
Not doing much today, already done a load of laundry that is drying on the heated rack this time before tumbling on no heat in the tumble dryer. Might do a 10 K walk to the mall to pick up queso since the next few days are to be rainy out. Tonight, I'll be grocery shopping with older DB and want to get some vinegar. My cold and sore throat seems to be almost gone, not taking so much ibuprofen or buckley's now. Still going to gargle the salt water with baking soda in it.
Kitty Kat, Candy and all others in pain or struggling, I am always thinking of you and sending healing energy your way. For those like Laurie and Lynne and others trying new treatment, may they be gentle and keep you feeling well.
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Lynne~love seeing your name here. I think of you often. I’m thankful for this new treatment you and any of our other sisters trying it. I hope for years on end. Hugs beautiful lady
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Kikomoon, you've inspired me to jump in. I've been on and off this site since 2016, when first diagnosed with ILC at age 67. More recently, I've been following these wonderful people since being diagnosed with bone mets to the spine in August. I too was one of the shy kids, still am, and usually read the posts on this thread and the bone mets, Ibrance and the "older folks" threads. I've learned a lot, laughed a lot, cried a little, and just enjoy your company. I hope we all are around to hang out for many years to come.
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A big huggy welcome to all of our newbies….many of us lurk around before diving in and some of us drop in and out as and when suits our lives, but the main thing is we are here like it or not and these people are very supportive and knowledgeable, not to mention sensible ( although I have decided to embrace my inner crack pottedness Mel 😂 I think we’re all entitled to a bit of that).
Fingers crossed for new meds Booboo. Lots of pocket duty on the go it seems.
I’ve a scan on the 14th which has been delayed due to backlog for several weeks, plus my MO’s Secretary told me the reports are also taking at least 2 weeks 😱. Shocker. I’m just hoping that I’m not deluding myself that, apart from side effects, the xeloda upped dose seems to be doing it’s job in that I’ve no back pain and I’m not any more breathless….so we’ll see.
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MoCoGram~welcome to the thread. I’m sorry that you have to deal with this. But like us all we need support. Sometimes people just don’t understand. Sometimes we just come to let it out and move on. I had many many a laugh. I am a little feisty at times. But could switch to being sad. Emotions are tricky things. I’m sending you a bug hug to Welcome you….
I know Montgomery county md well. My DH is from Rockville .
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Welcome to all the newbies here and glad to see more people joining us, makes me happy to see.
Karen, will be with you in spirit on the 14th in your pocket. Will be doing my witness prep for the murder trial on the 14th and hopefully getting to testify between oct 18 to early November. The actual crime took place in January of 2019 and found the bloody clothes in my backyard the same month. I would like to get my testimony over with and hopefully justice for the victim.
I also have an MRI on the 18th this month to check the enhancement seen on my brain MRI three months ago. Have not had any brain issues that I am aware of so hoping nothing turns up this time. Busy month for me.
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Welcome MoCoGram. Good to see so many new ones on here.
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Stopping by to say hello to newbies to the Living Room and hello to the old friends/regulars.
Lots going on here - dinner party last weekend, then spent the first two days at a rag rug workshop in a tiny village about an hour south of here and it was very relaxing to design something small, cut up a bunch of old clothes, and pull something together all while sitting in a very old pub (top floor events room) and chatting with four other women about random things. I now have all sorts of ideas and a ton of clothes material to cut up and sort by color - makes a break from needlepoint!
Karen - I got my booster shot notification today, exactly 6 months after my second. Did you get yours done yet? This came from central NHS booking, not my GP. Need to book it for a day when I can take the following day off if need be.
Mara - you are always on the go it seems, that murder trial is wild!
Next week have dentist Friday (xray checkup and cleaning) and then scan (CT only) on Saturday (16th). Yeah, I said Saturday. I dont mind so much, especially as an MO visit takes up most of a day so to get scans done on a weekend is easier and always quieter. Five months since last CT and not expecting anything as I feel well and spine MRI in July was tidy. MO gave me a two month Ibrance supply while I was away and its been AWESOME to have skipped an MO/hospital visit - almost makes you feel like a "normal" person.
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