My Husband, My Life, My Love, My Family, My Cancer
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Pocket duty for anyone who needs it. So many tests going on at the same time.
Mel, doggo is very handsome.
I am doing OK myself. Must go back for my first infusion of Herceptin AND Perjeta since June. I only got one drug last time which was OK. We will see what it is like with two again. I would prefer to drop Perjeta since it took me down quite a few notches but will fight against the side effects that were the worst ie drippy nose, exhaustion, no stamina and the itchy nerves.
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Yes,i’m doing good. I’ve been reading but just can’t seem to catch up! Everyone has had a lot going on. micmel i want to congratulate you on your good news! I hope to have the same time and results on ibrance that you have had. i’m so happy for you and your family!
i’m still working full time running the daycare. The children really bring me joy and make me feel like anything is possible!
I’m sorry to hear that some of you have had progression recently. you are all in my prayers.
now that i’m caught up i hope to be a steady member of this board again
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good morning fam!
I am heading in for a neck MRI with IV contrast to see how those little buggers in my cervical spine are doing! My intuition tells me I am still fine and stable but my MO said something confusing at our last appointment of which I need some clarification on...he told me all my scans have been “abnormal” so it’s a good idea to recheck. This was after I had a little meltdown and let “the Fear” get inside of me during our appointment.
(I am naming it “the Fear” which is for me when I start to freak out and feel scared and anxious.)
Anyway, I am going to assume all is well and will let you know how it goes. Pockets are open if anyone would like to jump inside!
Xoxoxo,
Philly
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pocket duty for sure!!!! Philly my sweet!! Snacks and all!
Holmes~Hi honey. Welcome back. I thank you for the kind words. I just hope it continues. I am so very glad to hear you’re working still. That’s amazing! Seriously. I am a slug! Always good to have an original back! ! 🌹
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Minnie~Hello sweet woman. I know you're sleeping. I hope they are sweet dreams. Much love !
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Mara~Good morning. Good to see you. Did you walk the apartment again today. I thought about it. Didn’t quite work out! I need to move move it !
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Philly jumping in your pocket! I like that idea of calling it The Fear. Tools for managing feelings are so helpful to me.
Tanya good luck with results this morning!
Holmes hi! I teach piano so I work with kids too. I'm so nervous about germs. I am in awe that you run a daycare!!! Yikes! But oh yes does working (especially with children) make me feel productive and alive? Oh yes it does!
My back decided to give out THIS week of all weeks when I am starting back to work. Ugh! I am hoping it's just temporary but omg. I went to a meeting the other day for three hours in a metal chair and that was not a good idea for starters. The next day a memorial service for several hours on my feet and in uncomfortable seats followed by a very crazy raucous party where everyone was hugging me and bumping into me (just a little drinking and dancing going on) and was on my feet a long time. I'm beating myself up over this a little. i should know better, but this is still all so new dang it. And that party was so much fun!
But first week back to work is really good so far. Smiling a LOT and so good to see all the kids back in the piano studio.
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" Philly Cervical mets always get my attention. I sure understand The fear. I was told it's a very critical place to have mets.
I may have told you my C3 story. Back in the day, October of 2000, MDA put me on a clinical trial. Going for a cure, since I had only one area of mets. Excision of C3 and then Taxotere. So, I had a C3 corpectomy with strut and graft. I still have all that titanium holding my head on. My neck was completely reconstructed from C2 to C5. I now call myself the woman with the bionic neck.
Needless to say, TX has changed since then. But, I NEVER have had bone mets since that time. I have liver, lung and mediastinal mets but NO bone Mets. Lol
Let us know your results, I'm very interested Margaritas in your pocket. 💞
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In your pocket Philly!
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Hi Philly,
I'm jumping in your pocket too! I hope you like Cheetos😊
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Hi All -
At chemo now...premeds going in...
Gumdoctor
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Hi all.
Philly- Probably too late for pocket duty, but better late than never, LOL.
Grannax- Cervical mets "critical place to have mets" ????? I ask for further explanation because I have C2 osseous mets (shown on the one and only PET at diagnosis). But my onc didn't, and doesn't, seem concerned with the bone mets. She was, and is, more concerned with the liver involvement. I have CT's of chest, abdomen, and pelvis every 3 months and those do not see that high up on the neck. So we are not monitoring that C2 met with scans.
Moomala- I am glad you are enjoying being back at the piano with your students.
Hugs to everyone.
Edited to say---- Gumdoctor, reporting for pocket duty. Hope the chemo goes swimmingly today.
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thinking of you Gum Doctor!!! And Philly.
Waving hello 👋 to candy and Mara.
I was productive today I actually went to three stores omg what???? 😮 I know right ?
Sooooo my new favorite thing to drink for like maybe 6 months or more is carbonated seltzer flavored water. I need some Taste. Well I'm here to warn you ladies. Watch it! I developed a BEAR 🐻. Of a UTI because of it. My goodness like painful and annoying. I am getting sick of all the crap we deal with. My taste buds are beat and sick of just water. So I'm annoyed completely. They want me to go pee in a cup, like I feel like doing that? Really. Uh no ! Please phone it in. If I don't feel better then I'll come in. But please not that! Got my script, I'll go Tomorrow at some point ! But now I have idea what I'll drink. Don't like soda at all. Don't like lemonade, too sweet and sugary. Iced tea gives you kidney stones. What's left other than alcohol lol. Which I never did anyway. What we cancer patients go through.
Much love~M~
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Micmel- Totally get the water thing. I have a glass of milk with breakfast every day. But then plain water the rest of the day. I have had kidney stones in the past. So no tea or soda (esp dark colas). I hate coffee. Plain water does get boring.
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Micmel, I hear you on the “what to drink" thing. I drink lots of water and water with lemon but sometimes I want something flavored.
Lately, I've been quenching that taste bud thirst with Gatorade. Not large amounts, but I leave a bottle in the fridge and will take some sips through the day.
Prior to mbc, I absolutely loved to drink Diet Coke and Fresca. It was such a delicious little treat. But that shit's not good for you, not good for the bones.
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Hi everyone! Have you ever tried sparkling water with a splash of cranberry juice? I buy cranberry juice with no added sugar. The water has fizzle so it is almost like drinking a soda.
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Hey Gang
My results appt today was a mixed bag of cancer poop in the sun. The radiologist or the office manager put the wrong script in for my MRI and instead of thoracic, cervical, lumbar spine, it read only cervical and lumbar spine. So I have to do it again. The results for the cervical were normal but the spine one showed some fluid or something which cuts off where the thoracic would have begun so no clear results. Another day soon full of scanxiety and such. ONC is sending me to neurological specialist so that by the time I get that appt he'll have the results back. I did get my zometa infusion, blood work and faslodex shots which are now generic fluvestrant. Thanks for reading the complaint boards.
I'm happy for you two, Moomala and Holmes working with children is certainly rewarding.
Mel good job shopping at all those stores woo hoo.
Gumdoctor sorry I missed pocket duty today for you. But I think you got some Simone cheetos and Grannax always brings margaritas. I hope it all went smooth or swimmingly as Candy said. I love swimmingly.
Has anyone heard how marianelizabeth is doing after her surgery?
Philly I hope the Fear doesn't rear it's ugly head. But everyone in your pocket is kick butt strong so they're with you sorry I missed it.
Divine I drink water. I did drink matcha tea and or coffee but had to stop. I did have coffee today for the first time in a few weeks. Half and half only it was delicious. I was never a big soda drinker so I don't miss that. Gatorade sips sounds like a good idea. I may try that as water is water is water.
Tanya
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Simone my husband drinks the dasani sparkling water and mixes it with juice of some sort. He loves it.
Tanya
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Hi Mel and everyone. I had a bit of a sad day today. I had a volunteer from hospice who met me on fridays and we would walk or go to coffee and have a good time on Fridays. Today, the manager in charge of hospice services said I no longer qualified to have a volunteer anymore. The volunteer apparently is for people at the end stages of life versus someone like me. I can understand that, but if the volunteer was for that purpose, I don't understand then why it was recommended to have this service if I do not qualify. Case manager recommended going to see a grief counselor instead. Not sure I want to. I feel pretty good emotionally and physically more often than not. The manager worries that I live alone without friends. I still enjoy talking to people, keep a clean home, go outside for walks etc. I don't understand why people think it is bad if I person enjoys their own company. I am just tired of dealing with loss this year, losing my mom, my brother, my home and lost contact with friendly neighbour. I have lived though that and come out on top. I am unsure if I want the grief counseling as I feel more capable and enjoy my quiet life. I have plenty to do inside and outside the home. Plenty of contact with other people. I just like being alone and having this page to talk to
Sorry for the long post, I just am sad I am losing another person in my life due to being told it is not a service I qualify for. I should not have had that at all if that was the case and I would not be dealing with this. I will get over it though. I am strong.
Good job Mel, Moomala, glad you are enjoying your job as well. Still in anyone's pocket who needs me.
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Tanya, how very frustrating to have to go thru the scanxiety all over again! I wish you the best.
Simone, the sparkling water/splash of cranberry juice sounds good!
Mara, I’m sorry to hear you’re no longer eligible for the volunteer. It sounds kind of heartless of the place to take that away from you. Although you question whether you want or need a grief counselor, why not at least try a session or two? You don’t have to commit long term. That way you know for sure its not for you, or perhaps you may get something out of it. There’s no harm in being open-minded.
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Tanya,
Sorry to hear you have to go through another scan. What a pain, those scans are not fun.
Divine,
The sparking water\juice mix is so good. I also boil ginger for about an hour, mix in honey with lemon, then sparkling water. It makes a really good ginger ale.
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You are all giving me such good ideas, my bladder feels better already. This ones knocked me off my feet. It just seems like I hop from one thing to another. My dads death, Then I fell down the steps, then I walked into the dishwasher. Gashed my leg . Took over a month to heal.... then I got a wicked wicked cold courtesy of my lovely son. Then it went into sinus. Now this. But I will take a moment and reflect and say I have no business complaining. I am more than happy with my meeting with my oncologist, so I'll put up with the UTI. I'm just glad I got to it early. Because it was starting to really become uncomfortable. I am so pleased with how fast my primary doctor works with me. She kicks out whatever I need. That's why I'll go Tomorrow and pee in a cup, because I respect her treating me so well. I have to honor her request.
You ladies are so special. I adore you all!
Mara I'm sorry honey. Seems like people keep playing badminton with your own life. Stop bothering you and allow you to live the way you want to. I spend a tremendous amount of time all alone. So poo 💩 on them. Tell them to tango with the cellular assholes for a while. They'll want to be alone also.
♥️♥️ To all!
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I may try it Simone. I will see what it is like. We will see after this week as I am booked up. They are going to call to set up an appointment. The main thing that bothers me about the loss of the volunteer is that if it is not being used properly, i don't understand why it was offered. The manager explained what it is meant for and it was for people who are actually in hospice at end of life, I am not at that point yet. I should never have had it. Another person should have had the service, not me. I am still doing fairly well all things considered and will stick with this site, getting out more in the neighbourhood and just enjoying when I do see other people. Birthday season is coming up for all of us, except for my niece who is in june, there are birthdays from sept to december and then thanksgiving and Christmas on top of that. I think that will avoid any funks. i also quite enjoy my little apartment as well. I even like the mundane such as vacuuming and laundry duties. I bought a portable washer and it avoids having to share a machine. It's great.
Tanya, I too am sorry about having another scan. Those are already stressful, I am in all of your pockets, not just one.
Just have to laugh because a dog from my building is barking at a dog across the driveway. They sound like they are having quite a good conversation though.
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Re drinks: I think Kombucha is delicious.... *if* you get the right brand and the right flavor. It is a fermented tea so it's probiotic(!), tart (sort of like tonic water) and bubbly. But not too much sugar as it's made with tea and a small amount of fruit juice. I like Kevita brand: peach-pineapple or grapefruit. Synergy brand: gingerade, guava, strawberry. You can cut it with water and it still tastes good. You can also mak it homemade but you need a "starter" - called a scoby - like a sourdough starter...
Mara, I bet the volunteer is sad to stop seeing you, too. Maybe there's a way to get some closure there, maybe send a note to let the person know that it was meaningful to you. My hunch is that a good time is always a two way street!
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Micmel,
You really have had a string of bad things that happened to you. Losing a parent is one of the worst things. But you got some good news last week so hopefully thats a good sign.
Santa,
I'm going to have to look for the Kombucha tea. I drink quite a bit of tea and that sounds good.
Mara,
Sorry to hear that you no longer get your volunteer. I'm glad your here with us, we enjoy your company.
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I love kombucha also. My favorites are - Kevita: turmeric ginger apple cider vinegar tonic. Synergy: Multi-green or Ginger-aid. Many kombucha flavors have added sugar but these flavors do not. They only have a touch of fruit juice.. I usually drink them on an empty stomach before breakfast.
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Santabarbarian, it would be nice to send her a note or text but hospice services kept that information private. I did not have her phone number. I would have to go through the message if I needed to send a message. I am feeling better this evening and just feeling good about having had a nice few months with her. In talking to her, she volunteers a lot and will be a benefit wherever she goes next. Still mulling about the grief counselor. I will see. I have been feeling good for a while so we will see. I really enjoy my own company and quiet life and appreciate the moments with family and even going to the cancer centre or saying hello if walking around my neighbourhood.
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Tanya, MarianElizabeth posted in the 'Canadians in British Columbia' thread that she's had her surgery, was feeling it went well despite having a fair amount of post-surgical pain. She seemed positive but had some recovery ahead of her.
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Tanya, sorry about another scan. Will be in your pocket again!
Marianelizabeth, hope you are making a good recovery.
Love to all xx
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Tanya~Good freaking grief. You're just too nice. I'd be flipping out. I know mistakes happen, but for you to have already prepped the night before. What a waste of energy and time and worry. I'm hopping in for pocket duty for sure!
Philly. ~Thinking off your results also.
Minnie~ hello beautiful, how is your weather? I know you're sleeping soundly I hope!!
Mara~ do whatever Mara wants to do. No one else. You make you happy. I'm glad you're content with us here. Finding your online home wasn't happening for me...... so I made my own home in hopes I would find my second family.
Runor~ hello dear friend. Always a pleasure to see you. Waiting for fall everyday! Gonna try to get out and walk. Or crawl. Who knows. Depends on the day! Hope you're well.
Waving to JFL and Simone!!!!!! 🌹🌹 ladies.
👋 to the lovely Divine. !
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