My Husband, My Life, My Love, My Family, My Cancer

mara51506

Goldens, I am also sorry on the loss of your brother.

Tanya have fun at the aquarium.

I have finally gotten over feeling sad when someone else finshes their treatment when I never got a break from it all. I used to feel bad but decided that being Stage IV and being stable from the neck down for 6 years and only having to deal with a met to the brain, I am pretty lucky that I am on something without terrible SE. I am physically strong when I mentally push myself to do it and life is going along fairly smoothly right now.

In short, if I have to be Stage IV, I do feel lucky to be where I am at when so many of us struggle with family issues, losses, SE and everything else. Let the people ring the bell and I hope for them they do not have to come back as stage IV.

I will say that I have used the radiation gong 3 separate times. Once for the breast wall rads, Once for whole brain radiation and once after my spot treatment in the brain. I hit it loudly too. Nobody sitting there will know I am Stage IV and may have to go back but it feels good.

moth

Goldens, I'm sorry for your loss.

I like the poem but I hate the bell idea. Elderberry, FVCC has a bell near rads but I've never heard it rung. It's on some sort of plaque that suggests it was a donation from someone's family. I suspect children's in Vancouver has one - I think it started as a kid thing?

Anyway, my idea for the bells is that we take them all, melt them down and make it into a giant fuck you fist and it becomes a travelling art exhibit that goes from cancer center to center. And everyone can pose with it whatever their stage and they can rub that middle finger and say FU cancer or FU fate or FU whoever and whatever.

I had a good weekend though I had an unexpected bout of nausea which put me back to bed for part of the day on Sunday. Never figured out the trigger and aftewards felt pretty much fine so that was just random weirdness.

I've been sorting and cleaning a bit, and learning how to make instagram reels.

I have my second vaccine booked for June 8. Elderberry, I got my CEV 2nd shot booking invite on the weekend.

illimae

The MBC zoom group is starting in a few minutes, if anyone wants to jump in. Just FYI.

illimae

never mind, I suspect it’s canceled due to the holiday, I’ll see you there next Monday.

Moderators

Dear illimae,

We are sorry and you are right the group was cancelled due to the holiday. See you and all who can join next Monday .

The Mods

ShetlandPony

https://connection.asco.org/blogs/ringing-bell-what-does-it-signal-our-patients

"Perhaps we should consider a range of options to suggest to patients at the end of active treatment so that this important transition is observed in a way that reflects how they are feeling, physically and emotionally, rather than prescribing a one-size-fits-all approach like ringing the bell." Moth has a suggestion...

https://news.usc.edu/161762/victory-bell-cancer-treatment-usc-research/

"Ringing the victory bell is a common ritual for people who finish cancer treatment, but a new study suggests it could cause lingering distress rather than joy."

"Williams speculates that ringing the bell locks in painful memories of treatment through a phenomenon called emotional arousal."

"We tend to remember events better when our emotions are aroused while the event is happening," he said.

Chicagoan

Shetland-Thanks for posting those articles. I'm glad to know that medical professionals are at least considering that "ringing the bell" might not be an appropriate way of signifying the end of a particular cancer treatment.

candy-678

Hello all.

Hope all are doing as ok as we can.

Yesterday evening I went out to get ice cream with my texting buddy that I have mentioned on here before. We are both vaccinated, but still wore masks, except when eating of course haha. He wore a mask out of respect for me. We stayed in his truck at the ice cream stand--- it was BUSY. No one in the crowd was wearing a mask. Then we stopped by his brother and sister in law's house to chat--- outside in their yard. It was a nice evening. And I felt safe doing it. The small stuff- that is what I enjoy now.

Kittykat9876

Candy I'm glad you're able to get out a bit now, it sounds like you had a lovely time.

I'm due for chemo tomorrow and I'm booked in for my covid shot the next day but I'm not sure if it's too close together, I checked all the govt websites but there isn't really anything because we weren't included in the initial trials. Has anyone been told anything in regards to this, I'm worried that I won't be properly protected.

candy-678

Hi Kittykat. I am on Ibrance and my MO wanted me to hold the Ibrance for 1 week prior to the vaccine and 1 week post. This is because of my continuous low white counts and low ANC (my WBC stays between 1.0 and 2.0 and my ANC stays around 800-900, 0.8-0.9) I have read that the vaccine works better if our counts are at their best, more like what a normal person's counts would be. Something about how the immune system works, I do not know the scientific explanation. When does your counts drop after your chemo? When are they at their best? But you need to ask your MO.

Kittykat9876

Thanks Candy, I had to have a blood transfusion last week, I had bloods done again today, hopefully they will be good enough to have it on Thursday, I'll ask tomorrow when I go for chemo.

Micmel

pocket duty checking. In !!!!! Hope all is ok today!

Trishyla

Hi, Mel. Nice to see you back!

moth

Hi KittyKat, our guidelines are to try to do it just *before* a chemo cycle, when your counts will be highest. It's the white blood cells that help to get the immunity ball rolling so you need them to be on board. I was told if counts were low you just wouldn't mount a good response but it wouldn't be dangerous - just not effective. Roche and my dr are trying to sort it out. I have chemo every 3 weeks and immuno every 2 so trying to shoehorn in a shot

Nothing new here today - it's beautiful and warm and sunny. I've already been out puttering with Olive in the back gardens. I think my allergies are settling down enough to resume breakfasts on the deck. Dh put out the furniture on the weekend and we had our first dinner outside.

Hope everyone is well.

Anonymous

Last day off before going back to work tomorrow so I am in a good mood. Compared to LAST week when I was in a crap mood or, god forbid, the week before that which was even worse. Maybe its the really great weather that suddenly appeared,or being able to exercise again, or just spending a few days doing whatever I want.

Grilled up a bunch of food tonight so we are set for the week, both of us committing to doing the paleo diet for a while to get some weight off. Feel like such a tub and I think it really finally hit OH how much hes put on in the last few months. But thats ok, better late than never and now is the time to do it, not when it was grey February lock down. We've both responded well in the past to this approach and since I have no social event scheduled until the 18th, its worth giving it a good try over the next few weeks. That and I paid over £6 for a pint of cider Friday at lunch with a friend and frankly if they want to charge THOSE prices Im happy to stay at home!

Micmel

Thanks Trish, I lost a week of my life to the second covid shot. Wowsers. It really made me sick. I don’t wish that on everyone. If that plus worse without the vaccine, I can’t imagine going through. The flu maybe times four. I had no fever. Everything else. It was four days of crap. My birthday was may 25 and I didn’t even know It. My daughter got me a beautiful cake for my birthday and I could barely eat it. I had flowers every where. Looks like it was a nice day. Shame I missed it. I cannot believe how difficult that vaccine was. The only thing I have left is the second shingles shot. I have a few months to do that one. Thank you for noticing I was gone. Hope everything is going good for you.

Micmel

Micmel

Trishyla

Beautiful flowers. Hopefully they'll last a little longer so you can enjoy them. I'm so sorry you had such a rough go of it. I did fine, but my husband, who is almost never sick had a pretty intense reaction as well. Fever. Chills. Body aches. The whole nine yards. Took a couple of days for him to feel better.

And of course we missed you. You are our gracious hostess, and even if I don't comment, I come here every day and check in on the group. Thank you for making such a welcoming space for us.

Happy belated birthday wishes.

Trish

GoldensRBest

Beautiful flowers Mel! I think you need a birthday re-do. So from Alice in Wonderland, A very merry unbirthday to you! I wish you that each and every day until May 25, 2022🎂🎈🎉🎁

mara51506

Lovely flowers Mel, I agree, hopefully you can do something nice to make up for the day you missed out on.

moth

Hope you're doing a bunch of catch up birthday fun stuff Mel!

I signed up for a 5 week online class with Olive. It's an agility class with videos and exercises and homework to do and it's on very specific jumping skills and doesn't require a full agility rink set up so it's perfect for us now. I hope we can keep up with the lessons and assignments. The first lessons were posted today so I'm going to go watch that, try to set up my tripod (so I can video our progress) and go play

mara51506

Enjoy learning the new things Moth.

emac877

Just popping in to say hello. Arizona was good, hot, but good. I hadn't seen some of the family there in a couple of years. Traveling is exhausting though so I feel like I'm still recovering from that. I will say that I ate way too much Mexican food. OMG so much. They just don't make tacos and tamales like that in Oregon. My stomach was not happy with me for days but I have no regrets.

I had an appointment with my MO the day I got back and found out she is retiring. I am brokenhearted! She has been amazing to work with and even though there are very capable oncologists in the same practice I feel a little vulnerable. She's just one of those that is on top of every little detail and in the three years I've worked with her I trust her with my life. I'm just not ready to transfer that trust to someone else yet.

I am still catching up with the backdated thread. Thinking of you all and hoping all is well.

mara51506

Emac, glad you enjoyed your trip and all the Mexican food. That is closest to what I eat everyday with blackbeans, queso, beefless ground and nacho cheese. Love it.

Sunshine99

emac, I hear you on the Mexican food! When I moved to Maine from Southern California (in 1982) I missed Mexican food SO much. I couldn't even find tortillas there. When a Mexican restaurant finally opened, I was so excited and then SO disappointed. Calling that food "Mexican" was like calling Spaghetti-Os, "Italian". The first thing I did when I arrived back in Southern California was to hit a Mexican restaurant. it was HEAVENLY!

So glad you enjoyed your trip.

Carol

moth

Hi emac, glad your trip was a success!

Day 1 of our agility online class was a funny but hilariously bad. I'm sure things will improve - we're both just super rusty and not communicating well. I did get my tripod and the remote for the phone camera working so that was good. I wanted it to video my training sessions and use it on Olive's instagram.

It will come in handy too for my other instagram project. I started making little videos about stage 4. I'm still learning all the editing and music and various effects so they're pretty rough but it's been fun. --- edited - turns out you need an instagram account to view --- . They all have sound so speakers on https://www.instagram.com/itisjustastage/?hl=en

Micmel

Emac~great you enjoyed your trip! I can’t handle spicy things anymore so I envy those that can. I love Mexican food and Buffalo mild wings with blue cheeses dipping sauce! No more though. I love that some Of you travel. I go very local. My spine gets angry. Far trips. hope everyone else is doing good. Showing up for pocket duty! Confetti cookies in hand. Yum! Hugs

candy-678

moth- I tried your link but it wanted me to have an Instagram account. I do not have one. Said I could create one thru Facebook????

moth

oh boo, candy, I thought you could see it without an account. My son doesn't have insta and he can see my reels but maybe it's because it's a direct link to a reel. I just tried when I logged out & I can see one reel but not my whole account. Can you see this https://www.instagram.com/p/CPpKdV0Aa2c/

(btw Facebook owns Instagram so you can use the same login if you use fb or create a separate account. But don't do it just to watch my silly reels lol)