My Husband, My Life, My Love, My Family, My Cancer
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Mae~good vibes for sure. hello to everyone. I’m just hanging back taking some time to process my pitiful self. Hope everyone is ok.
BooBoo~ I’d like to talk to tomorrow morning ???! Perhaps
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Micmel, struggling is not pitiful, please don’t beat yourself up. You’ve taken action and I’m certain things will get better.
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Good vibes to you Mae.
Micmel - I hope you are able to get some rest and some calmness.
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Mae, adding some good vibes for your mri tomorrow
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Count me in Mae. Good vibes all around. Fingers crossed for good results.
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Mae, in your pocket tomorrow.
I agree with you Karen. If someone asks about my cancer, if I somehow let it slip, I am matter of fact and answer only what is asked. Overall, I am pretty used to having cancer, going on 6 years with this beast. Unless something changes, it is not the primary thing I worry about thanks to stable scans and no real side effects. People think I am so brave because I can talk about it, it is just my reality, I cannot be miserable forever. Just like when my mom passed away two years ago, when she was first gone, I was in agony. I cried until it hurt, I cried when I was packing up my condo, I cried once people left my apartment after moving in. i got a social worker for cancer, so I asked for one to deal with my mom's death. Then I was part of a friendly visitor program where I would see another woman once a week and we just walked around a mall upstairs for a couple of hours then had coffee and a donut. That came to an end as it turned out this woman's calling was to help those in hospice. Not sure why I was offered this service and it broke my heart all over again. I did a modified version where someone was supposed to videochat once a week and the first one was fine then the second person was a newly landed student over 20 years younger which was tough since we did not have a lot to relate.
Finally, I got signed up on a checkin call from a nursing service. The person calling asked if she could call me sometime as she enjoyed chatting. We just needed to do it outside of the nursing service. We don't meet up in real life, we both decided against that, she needs a barrier since I am a friend and a client but talking to her is a godsend.
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Mae - pocket duty and good vibes.
Mel - the world will throw names and adjectives at you. Don’t do it to yourself! When you sit in this living room, you are loved for who you are.
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Mae- Pocket duty for your MRI.
Just reading along here. Yesterday (Wednesday) I did monthly blood work. ANC down to 700 so orders from MO to hold Ibrance a couple of extra days and recheck lab. Sigh...
I will keep reading along here today--- it is only 7am here. Hope everyone has a better day today.
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Mae - in your pocket today - with the Good Vibrations music swimming around in my head
Hugs to Mel. Hang in there.
Good morning, Candy!
I am way too chipper to be up this early.
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SeeQ- Send some "chipper" this way.
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Just spoke to a friend on the phone. Her husband was napping last night before bed. She went to wake him to go to bed. He would not wake up. She called 911. He has had a brain bleed. The doctors say there is nothing to do. He is still alive this morning but family was called in. With Covid precautions, only 3 family members are allowed at the bedside in the hospital. No one else.
I am so tired of Covid. If we lived in different times, I could go be with her. Make sure she eats, spell her so she could rest.
I have another friend having a procedure this morning. Cannot be there either.
And even if the hospitals would relax their rules, with my especially low counts I would not feel comfortable being out and about.
I am just tired of everything going on right now. Troubles all around.
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Mae, good vibes for today's MRI.
Mel, I hope you're taking some time for you.
Candy, I'm so sorry about your friend's husband and you not being able to be with her. That is so sweet of you to want to be there to help her, and I know it's hard not to go.
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Candy, That’s awful about your friend’s husband. It’s truly a sad time when people in crisis situations can’t be supported by friends and family in person. I hope the three who can be there are a comfort to each other. You seem like a wonderful friend to both of these ladies, wishing you could be there.
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Mel, Mae and Candy, my thoughts are with you and my heart hurts for those hurting. Even if it can't fix it, it helps to know that others here care.
Carol
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hi, trying to catch up a bit.
SeeQ, happy for you that you'll get to see your boy
Illimae, pocket duty!
Candy, oh how sad for your friend and you. Life's so hard some days.
I'm off to chemo in a bit. My 7 week chemo vacay is over. We're doing a reduced dose so hopefully I don't get as bad pain, fatigue and neuropathy as last time. The neuropathy fortunately retreated over the 7 weeks back to its baseline mild level. I started a new knitting project so I hope it doesn't impede the knitting.
Still.havent thought of a treat/special thing to look forward to for this week (suggestion from Tanya) and it's already Thursday 😄 I will try to come up with something and maybe extra for next week
Hugs!
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Mae I've been in your pocket since I read it yesterday. I have pistachios!! hoping for best results.
Candy I know you are a kind friend and you believe in prayer. It's the time we're in and our health we can't do what is part of who we are; like support a friend. Sending hugs.
Moth I did the tent thing and took it down myself which was really easy. I saw my husband looking at the mess and figured we had our fun. I ate all my Ben and Jerry's Canoli ice cream with a cone but not a plan just ate it HaHa! I really hope this chemo treats you well. I had heavy duty chemo in 2003, I think they've made it more bearable now. I was actually used as a teaching experiment in NY bc my anaphylaxis response to taxol was documented. I let the students take pictures of the rash that covered the entirety of my body. The taxol burned the skin off of my body from the inside out, except hand palms, bottom of feet and face. Of course I was hospitalized for a week and they did a study on my reaction at Stony Brook University.
SeeQ love the reunion talk.
Yesterday my DH co-worker informed him that he has Covid. We're just waiting staying away from everyone. I don't think my DH has it but that's just a scary realization that he could...
Tanya
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Thanks ladies!
Moth, I’m looking forward to a private fajita party. DH is off camping for a couple days, so I’m gonna pick up from a local Mexican restaurant and eat it all myself 😁, just gotta find a movie for tonight too.
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It was rainy and gloomy again here today so I informed OH this morning that we were ordering in burgers and fries from Five Guys for dinner just to have SOMETHING to look forward to. They were delicious
I think we get some sun tomorrow before more clouds move in. Its about 40F and misty rain all day every day. Boy cat doesn't know WHAT to do with himself when the weather is like this, but when it warmed up two days ago into the low 50s he was out and about at night visiting with his buddy Freddie from the neighbors and checking out the village street scene from the high wall in the front of the house. I guess even the cat is over this lockdown bs. His sister is instead hibernating through the pandemic.
Take care all!
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Well, an update. My friend that had the procedure today is home and resting. Appointment with doc next week to fully discuss the issue.
My other friend, with the husband and the brain bleed, is still unresponsive, comfort measures. Setting up hospice and will be discharged home with hospice tomorrow. My friend is holding up, but tired and says she has not eaten anything yet today. I think she is still in shock and denial. I will be glad she can be in her own home again, but still I do not feel comfortable with Covid and my counts to go over and be with her in her home. I am sure family and friends will be going in and out.
I used to work full time, but now that I am "retired" and have free time on my hands, I cannot help as I wish I could. Be there for others. I must stay in my home and rely on the phone to check on them.
I did some vacuuming today and made the phone calls.
Mae- When will you get your MRI results?
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Candy,
Maybe you could order them something from a local deli (could even be a salad) and have it sent to your friend. Anything to help her know she has good friends looking out for her. Such a sad thing to happen.
Mel, as you can see, I just logged in. If you mean tomorrow (Friday), I will not be home in the morning, but would love to,talk with you on Sat., Sun., or any day next week. Can’t wait to catch up.
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Mae - fajitas and a movie sounds like a nice relaxing evening.
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Sondra, five guys, nice choice 👍
Candy, sorry about your friends, sad.
Results tomorrow by noon. I feel relaxed but slightly concerned that sneaky cancer might have taken advantage of the treatment break, although, it was only 2 weeks, we’ll see.
Fajitas and Rita’s, which I haven’t tasted in more than a year are just magical.
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Oh my gosh Mae, that looks amazing!
It sounds like there are several of us struggling and I'm sorry, sending you all hugs. Yesterday I didn't even get fully dressed, excusing myself to wear sweat pants and have no motivation all day. I think I spent about 90% of it on the couch with Netflix. I feel a little guilty when I do that, I know I should get out and walk or do something productive but I just hit a wall and shut down. I had to have a couple of hard cries. Stuff I just bottle up and then it just overflows. I hate Covid, I hate cancer, I just want the world to feel normal again. I blame some of it on this foggy, rainy Oregon weather. Every winter I struggle with this weather. It's not always cold but it feels like the sky is crowding in and smothering me with this fog. Blah! The rest of it is just me and my brain. We got a break from it today and the sun was amazing! It felt like my brain could breathe again and my mood was instantly more chipper. It was almost 60 degrees with blue skies. I went and sat on the deck and just put my face up to the sky to soak it in and did a quick run to Costco with my mom. We're having another week of clouds and rain again but I'm back in my work stretch for the next three days so I won't notice as much.
I'm hoping all of you get a break and a little sunshine in your week too. We are due!
Question for the group: Did any of you work with nurse navigators or social workers after your MBC diagnoses? I had one for my initial diagnoses but that was pre-Covid and I don't know if one gets assigned to metastatic patients or not. I had a survivorship meeting with an NP after I got done with chemo and radiation in 2018 but once I had metastatic cancer I feel like I have been on my own outside of my check up visits with my MO. I use these boards as a support group because you guys get it in ways non-cancer people can't. I also just run in to non-medical questions from time to time and feel like my doctor doesn't always have time for those kinds of concerns when I meet with her. Sometimes I just have questions about working and SSDI and life stuff that isn't necessarily medical so I'm not sure what to do with that.
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emac, I live in lounge wear and only get fully dressed when running errands or going to appointments. I love being comfy.
Also, I haven’t worked with a navigator exactly but my insurance has a program for cancer patients where a nurse calls every couple of months to check in and see if I need anything from financial assistance, rides, help with approvals. My former insurance lady was great and so sad when we discussed my retirement system changing providers. She asked if she could still check in on me from time to time even though it wouldn’t be part of her job. Other than that, my MO’s staff handle required SSDI and other disability paperwork but nothing outside of medical.
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Candy, I'm so sorry to hear about your friend's husband. What a shock for her!
Sondra - I love that your girl cat is hibernating through the pandemic. That's what I want to do!
Mae - your Mexican food looks great! The Mex food around here is only okay, IMHO, but it was great when we were driving through Texas. Does your dh not care for it?
emac - I only put jeans on when I'm leaving the house, and only now because it's cold. The nurse at MDAC-JAX, which is where I got my second opinion, seemed like she'd be my POC for all things MDAC. I had a call - very early after my diagnosis ‐ from the nurse navigator here, and it seemed to be more of a referral service, focused on financial and food/transportation assistance. I guess I should look at it again since my head isn't spinning quite so much now.
My boy made it home much earlier than expected, so we get an extra day with him, and he gets a chance to visit with some friends tonight. 😀😀😀
...and I de-Christmased my house just in the nick of time!
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Hello All, apologies as a little cross posting on my part.
Just been told my cancer is progressing, nodes in pleura, a spot on my spine and an enlarged lymph node in my chest. Main issue is a large pleural effusion- my right lung is full and I need to go into hospital on Monday to have this drained over a couple of days. Been so breathless it's scary, but now we know why!
Then it's change treatment to Xeloda as the Faslodex is clearly not working. I’ve found a Xeloda thread and feel reassured to see some of you there already.
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Karen- Oh my!!! Sorry you are going thru this. Sounds scary to have trouble breathing. They are ok with waiting until Monday? My thoughts are with you.
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Thanks Candy. They can’t do the procedure until I’ve had a few days off the blood thinner and Mon means the full respiratory team will be around. I’m OK as long as I sit still and I can still sleep thankfully, so I’m safer and better off at home. Not looking forward to a hospital overnight and the chest drain, but needs must. As I only had the CT late yesterday the teams have been very swift at arranging all of this - lots of phone calls today! If I deteriorate I’m to go to A&E (ER) but hopefully will be OK.
Sorry to hear about your friend’s husband- she must be distraught.
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Karen,
I read your post on the faslodex thread and now here. I am so sorry that you are going through this. I hope that the procedure will greatly improve your breathing issues, and that the Xeloda will take care of any progression. I lurk on that thread, and it seems that many folks there have had excellent success with that treatment.
Wishing that you feel okay over the weekend, and that you get some of this squared away on Monday. Thinking good thoughts!
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Karen,
I am really sorry to hear this. I had terrible pleural effusion at the time of my diagnosis and know how hard it is to breathe with it. Hang in there-hopefully Xeloda will dry it up.
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