My Husband, My Life, My Love, My Family, My Cancer
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Reading along and thinking of everyone.
Tang, I'm so sorry about your progression, and for the long weekend before you can talk to an MO.
Mel, I'm glad you're starting to feel better.
Mae, that is incredibly generous for you to open your home, especially under the current circumstances.
Candy - is great you got your vaccine already. We're not that far along yet.
Karen - I can't even imagine all that going on in the hospital. Brava for the nurse that helped you out.
Moth - I liked your new approach to waiting on scans
Waving to everyone else!
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Woot - just booked my first vaccine for tomorrow morning at 945 am. Thanks to pizza indigestion, cats, and I guess just being awake at 5 am, I read a post on another forum that indicated to try the booking service even without having received the GP letter or text, if within the current vaccination groups. I did, and it worked! No idea which one I will get, but I chose the fancy biomedical research facility likely to have the freezer capabilities for the Pfizer vaccine, located off a main distribution road. Either way, it'll be a relief to have the first done and get some protection.
Karen - if they didn't jab you in hospital and you are still waiting, try the NHS booking link:
www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/
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Tang, I’m sorry about your bad news. It stinks. I would have wanted to read the report too, it’s so hard to not know results of tests. If this was your first treatment at stage 4 I believe there are still many others waiting. In your pocket for your Monday appt. 🌺
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Tang - virtual HUGS to you - cancer sucks.
Mae - you are so kind to make sure your friend has a place to lay his head! If there were more people like you, the world would certainly be a better place. In the short time I’ve been part of this living room, I’ve seen much kindness. Maybe some of the asswipes out there need a deadly disease to kick the meanies to the curb....... just wondering.....
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So, our houseguest had coffee brewing when I got up yesterday and he swept and mopped the kitchen. DH and I both dislike cleaning, I don’t know if the floor was so bad that it bothered him or if he was being helpful, either way, I didn’t have to do it, so yay!
Might go look for a new car next week and beginning planning for a small outdoor crawfish boil in a few weeks. A friend wants to do it, another friend wanted a get together for his brother’s birthday on 2/17 (DH’s good friend from many years ago), who passed away and my birthdays 2/18 & 2/19, so planning an all in one event.
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Hi Mae, throw a crayfish in for me, my birthday is 2/20, I'll join you virtually.
Wide awake here, yay for steroids, the infusion went really well, it's been almost 8yrs since the last one, my oncologist came and held my hand and gave me a big hug while I was in the chair, I'm so lucky to have her on my team.
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tangandchris - I am so sorry you are seeing progression. You said that you have completed two cycles. Is that two cycles of chemo, Ibrance or something else? I am not sure how long a treatment should be used before you can say that it has really failed...maybe it hasn't been in your system long enough to have had an effect. I don't know. Something that might be helpful for you this weekend is to look over bestbird's MBC guide. Bestbird is on this forum and she constantly updates a guide. Here is a link to her topic and you can download her guide: https://community.breastcancer.org/forum/8/topics/... . I ordered her book because I like to have something physically in my hand to read. I found her guide very helpful to help me see what next steps would be if my current plan failed, etc. My next appointment after I got her book and the stage 4 diagnosis was pretty fresh, I felt like I was able to understand what my MO might want to try and he did assure me that we had many other options to try if this one failed. It may be that you would be a good candidate to address some of these cancerous areas with radiation.
Hello everyone! Busy busy right now but wanted to get that information out to tangandchris to give her homework for the weekend.
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Mae, now that’s a sweet house guest. They don’t want to take advantage. That’s so nice.
Had a colonoscopy today because all my scans kept saying I had constipation, so I wanted to make sure everything was okay. Came back perfectly clear. I don’t know why I feel this way, but I’m literally doctored out. I am going to take these next few months and try to put cancer on the very, very back burner. I feel decent and don’t have to think about scans until at least April. I may even push my CT another month out. I honestly think I might just watch my bloodwork and how I’m able to eat to say I’m doing fine. Those were my symptoms to begin with, and I’ve been able to eat better for about six months and feel pretty good. I’m so appreciative of how long I’ve made it. My brother passing so quickly puts things in perspective for me. One of the people at my colonoscopy said his sister was in great health. She was having dizzy spells and she had four tumors in her brain and lungs and died within a few weeks. Then I had a coworker from many years ago who I found out passed within weeks after having back pain and found out she had tumors wrapped around her spine. I will take longevity with this disease any day. I’m so appreciative.
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tangandchris, oh what a kick in the teeth with those ct results. Where were your original mets that led to the stage 4 dx? Hang in there until your appointment on Monday. There are so many more treatments still to try.
I got all my appointments yesterday. They even had an RN on hand to access my port for the CT scan for a change so I didn't have to go through several iv starts. My GP appt was good - she did my prolia injection but also spent time talking with me. She gets all the written reports from the cancer agency but she likes me to tell her what is happening because she says then it all makes more sense. And she's really good about asking how I'm mentally and talking about just life. So that was nice but also kind of exhausting, kwim?
And I got the the curbside groceries too! Discovered we'd forgotten to add a bunch of things to the shopping list but that's how covid groceries are now - between us forgetting and the store being out of stock of some things, all meals are a "plan your own adventure" lol
I'm going to make cinnamon buns today. Was planning to make pizza dough for tonight at the same time but I forgot to buy the vegan mozzarella so ...nope. I might make lentil soup instead. Probably a healthier choice to go with the cinnamon buns lol
Other than that, I'm going to vacuum and do some other minor cleaning, then play with Olive and do my Zumba and hopefully work on my knitting a bit.
hugs
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I did get my echo done today, lucky older brother said last night he wanted to drive because he felt the weather was too cold. We got a dump of snow that went up to my knees when heading out to the van. We also got stuck on one of the side street. He had not got around to putting the winter tires since we have not had much snow thus far. Echo was fine, went to a drive thru and had lunch in the car and went shopping at the grocery store. That is where I got most of my walking besides the 20 mins by treadmill. Nice day overall, nice to see the family too.
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Hi all.
I am reading along and thinking of you all.
I do not usually nap, but I got up early this morning-- 5:30am-- and it is a cold day, so I took a nap. Nice. Cat beside me. Snuggly warm. You know that area between awake and asleep, I was warm and I thought "I do not want to get up. I do not want to feel sick and hurt yet." My waking time always has some element of blah-- nausea, pains, stiffness when moving. I felt so good I didn't want to face it again. Do you know what I mean? This cancer crap is hard, the meds that keep us stable are hard. I treasure the meds. I treasure the stable scans. But I am tired of feeling sick.
Edited to say--- Moth- a bowl of soup and a warm cinnamon bun sounds great!!!
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Cowgal-
Thx for the reminder about Bluebird's book!!
I have been doing the Kisqali/Faslodex combo which seems rare on these boards. Its 3 weeks of taking Kisqali everyday, the 4th week is off. The Faslodex is a monthly injection. So I've done 2 months of this regimen.
My initial mets were found on my mediastinal lymph nodes. There were also some lung nodules and abdominal lymph nodes that lit up, but too small to biopsy.
Now the CT shows more and larger nodes on my celiac area of my abdomen. The lung nodules are more numerous and larger. And a brand new mass on my iliac wing, my hip??
I had hip and tailbone pain for a few weeks but figured it was the shot.
I'm going to ask about biopsies to check these markers.
I miss being able to freely visit my family without worrying about covid. DH is like warden about us not being exposed, but I'm also feeling lonely as hell.
Is this abdominal node metastasis common? I haven't seen anyone here on this board talk about it.
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Hi all, jumping in today to wave and say hi. I'm a lurker.....I don't have much to add to the thread other than to say how much I appreciate all of you. I'm doing ok, still on Piqray 17 months so far. It's a complicated drug with a lot of SE which keep me busy.....lol mainly managing blood sugars and diarrhea. I see the MO Feb 4 to go over the CT scan results....I don't see the results ahead of time either. Sigh.
Tang, I have Mets in the abdominal lining. Yes it is an odd/ unusual place. Definitely ask for a biopsy...the P1K3CA mutation was found when the Mets returned to the abdominal area.
Mel, stay well. Your tumble sounded nasty.
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Pots, nice to see you, it’s been a long time.
Waving hi to all
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Hello all
Candy snuggling with your kitty on a cold winters morn sounds amazing. The stuff Hallmark cards are made of. Such a sweet picture in my mind minus the reality stuff.
Waving hello
Take care all
Tanya
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Candy, I can so relate. I took a nap the other day. I woke up and said to my doxie, “Abbey, we have to get up. Tomorrow, we’ll get up tomorrow.” Of course it was too early to be in bed, I was kidding, but, boy, I wish I could have stayed in bed.
What does it mean when it’s in the abdominal lining? Mine is in my stomach. How do they find it there?
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POTS~hello sweet woman. I've been asking about you for months. Looking for Stillivin. Also. You're one of the lurkers huh? I'm glad you came out of the shadows long enough to let us know you're ok. It's Always a good day when you see an old friend pop in. Thanks for the mention of. My falling. I appreciate it. I'm glad things are ok with you. Sending you hugs. Missed you around.
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Pots, I will be in your pocket for the scan results on the 4th.
Mel, hope the pain is getting better or gone.
I am glad I got a ride to my echo from older DB, had knee deep snow and am not used to walking in that. I would no doubt trip and fall in the pile of snow and be unable to get up. I would have cancelled the app't otherwise. I did also have lunch in the van with them and we all went grocery shopping.
Not doing much today, just waiting for my fleece pants to come out of the dryer and will have a small breakfast. I want to walk outdoors as I believe main streets have had sidewalk plows go by. Doubt my street is done yet but I can wait. It is cold and that is why I am waiting for my fleece lined pants. Also have done couple loads of laundry, made some extra washing soda. Really love that stuff and so easy to make. I have never found it in any grocery store here.
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Good morning, houseguest (HG) is like a chihuahua, can’t sit still for long. He completely cleaned the downstairs bathroom yesterday and now his doing the breakfast dishes that I only put in the sink 10 minutes ago. He knows all the cleaning is not necessary but I think he kinda can’t help it.
No weekend plans, so just chillin’
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I think he might end up my new permanent house guest if he did that for me. Lol. I just don’t have the room. My house is small. I should not complain having to clean it. Lol. It’s refreshing to hear someone who isn’t taking your kindness for granted.
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KBL my pet scan that diagnosed MBC had lesions in abdomen. I had radiation and then ibrance faslodex. I also had a complete hysterectomy cancer there too and the surgeon told me he saw cancer in my abdomen but left it bc it was in a complicated area and the tx should take care of it. I don't know if this is helpful.
Mara nice to get moving early with laundry and outings. I am drying my clothes now. I went in the garden and pulled roots and tried to make a bed for planters. I'm on. Real after a half hour of that.
I made another appt for vaccine. It's not a real appt you just sign up for it. It's the second time I did that online but no texts calls or emails so... DH has his second shot next week.
Good to hear from you all.
Tany
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Hi my friends! Just popping in to say have a good weekend everyone, I'm going to try to stay away till Monday
(jealous of all the vaccine talk. Looks like march or april at earliest for cancer pts here & I'm taking that with a ginormous grain of salt since ours are coming from Europe and there are supply disruptions already).
hugs!
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Thanks for the NHS a link Sondra. I’m in next week to start xeloda and a bone scan so will check in then to see where we are with vaccines. Still recovering from pleural effusion/ pleurodesis. Had to face up - and the physio basically told me - that I need a fair amount of recovery time. Still not breathing normally and there is still some fluid in the pleura, so this will take time. Improving a bit each day so need to be patient.....not my middle name sadly.
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Tanya, thank you. I guess I’m just confused because mine is in my stomach, so how do they differentiate the abdomen and stomach? Mine has never shown on scans.
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I have my grandson today. I’m so proud of my daughter and her husband. They make time for each other and have date days. I forgot that we have a camera at our front door. I can’t tell you how many times I went in and out today. It was a beautiful day with temps in the low 70s. I love these days. We don’t get many. Anyway, I look at my videos at the end of the day. There are quite a few of me and my grandson. It was just the two of us today. I’ve been teaching him to say I love you. I said, “I love you” as we were going in the house. He said, “I wuv wu.” To have that on camera and not have it planned is so precious. I will cherish that forever.
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Mae, you (& your hubby) are to be applauded. It is a HUGE gift, to take someone in in a crisis, and help them weather it and re-launch. Bravo! Thank you for being that person!
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Hello Ladies. Happy Saturday night to all. Going to bed and I wanted to check in and see how the family is doing. I know some days are good and others are bad. Nothing like a grandson story to warm your heart. I hope to god to see my grand children. My son doesn't have a girlfriend. He's so picky. He just doesn't date just to date. He wants to feel strongly about someone. I think that's good. But he's 24 tomorrow. I worry about my young ones. I know 25,24,19 isn't really young ones. It this worldsucks ass. Now we have to wear masks to be in public and we have to limit social gatherings. Everything is ultra expensive for us, imagine how bad it will be for them. My time growing up , I snuck though without a degree. These days they may not interview without one. Pay isn't great but housing is your ass.... you hand over all your money for your home. Bills. Never stop makes it hard for a young couple. Now a days they both must work. I feel for the kids. I refused. I wanted to be home. We were. House poor. That's what we spent every cent on. It was hard. I watch them struggle Now even. I tell them. Think long and hard before you have kids. Changes everything.
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KBL, that is just too precious. And to have it on camera is a joy to cherish.
Mae, you better keep that houseguest on! Lol.
Karen, hope you feel better day by day and the breathing gets easier. Put your feet up and rest.
A guy my BIL was helping with a side job caught Covid from his wife. She recovered. He was really sick with pnemonia for a week, then started to improve, but sadly died just a couple days later. This virus is real and scary. I get so angry at entitled anti-maskers. I can't wait to get the vaccine, but my 88 yo. mother needs it first.
Mel, hoping your pain is more improved.
Hugs to all.
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Bliss~hi there friend. I’m sorry to hear of another death from this covid beast. What a shame. I guess they are right when they say it is easier on the younger. My son did fine thank god. A week for him. Bad timing. But he was ok. Just a miracle I didn’t get it. My DH gets credit for that one. Good to see you. Ty you for asking about my pain. I think I’m an idiot. I should have gone. To get an X-ray like all you ladies and family said. I have this one spot on my lower butt and high thigh that hurts with certain movements and pressure . I’m highly annoyed that it still hurts. My nurse friend said bone bruises can hurt for weeks and months sometimes. It definitely hasn’t been easy at all. I hope you’re good.
Moth~ have a good weekend!
Karen~rest up. Please.
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Thanks everyone for the kind words. I’m very happy to share that particular trait with DH. We do what we can, if we can and believe in second chances. It’s always been our thing to gently steer friends in a direction of helping themselves. So many things aren’t taught in school or at home, a couple of friends (in their 50’s) never learned to manage their own finances, which adds to their troubles. I think this never fully growing up thing is sadly very common.
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