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

candy-678

Thank you ladies.

I had a conference call with Hospice and the Nursing Home today. We discussed several things- my sister's anxiety, pain, nausea, bowels, etc. Apparently no BM documented in a week ???!!! They are working on resolving the constipation. Changing meds to liquid form for ease of giving. Various options for the anxiety. I hope something works and she has better quality of life versus quantity.

I was informed a staff member of the Nursing Home tested positive for Covid. So they are restricting visitors. Since my sis is on Hospice they are being more lax for the family, but, I am hesitant. So... I am going to maybe visit tonight for a few minutes out on the patio. The heat is horrid right now--- heat index 105 today. But maybe at 7pm or so, outside on the shaded patio, we can tolerate it for a few minutes. If she can tolerate it in her wheelchair.

Good grief.

50sgirl

Candy, I am sure that your sister will be happy to see you. Please take all precautions during your visit. It is a good idea to meet outside even in the heat. You are doing everything you possibly can for your sister, including the calls and meetings with hospice and the nursing home staff. She is so lucky to have you during such a difficult time. So many people go through it all alone.I know how hard this is for you. You are in my prayers.

Hugs and prayers from, Lynne

booboo1

Candy,

I’ve been quietly watching your strength and the love that you are showing your sister. I’m praying for wisdom for you as you navigate the decisions you need to make for yourself and your sister.

Take care, my dear

booboo1

Rosie,

The link you provided a great source of the information I’ve been looking for. I bookmarked the site, and am going to go back and see what else I can pick up. Thank you for sharing it.

Rosie24

Booboo, You’re very welcome. We were given a little booklet as family members when my mom was in a hospice facility and it included some physical stages and other info for us. I found it very helpful to know what might be ahead, and that it was a gradual, “slipping away” process for many people. This gives me some comfort now for my own end days although of course we don’t know what it’s truly like. I appreciate you being so open about how you’re doing, and I hope you have a lot of time to enjoy feeling good.

Booboo and Tanya, How nice that you were able to have a visit

Karen, Hello, it was nice to see your post. The photo is beautiful, I’m glad you were able to enjoy some time away.

Karenfizedbo15

Thank you Rosie. Candy you’ve got some really hard stuff going on just now. Hang in there and I see lots of our members are supporting you. Not easy for you at all…….

Micmel

BooBoo~ thinking of you as well. Candy~ of course I wish I could lighten your load

mara51506

Laurie and Candy, you are both always in my thoughts.

So was asked by a friend while talking on the phone why I like to walk so far. She knows I live alone, yes I have an older brother and his family but I really do not participate in much of what they do. Living alone and having to be careful how I spend and make money, there is not a lot I can do besides surveys, laundry (which I love doing to this day) and walking. I told her that I walk because there is really nothing else for me to do. I don't have other friends I see on the regular, I see my family once a week or so but it is a really quick drive and groceries if needed and I appreciate that but it is not really visiting with each other. 95 per cent of the time I am alone. Walking allows me to see people and places I might not normally go and push myself further with more caution. I am also limited by not having a car, if I had a car, I could drive to a nice park and walk through it or drive to a beach and walk along the shore early in the day. That is part of it.

I personally cannot wait until the weather cools down so I can devise an all day sort of walk across the city. I feel great, I love people watching, this ticks my boxes and makes me happier than I have been for a long time. As long as I am able and the weather allows, I will be out training myself to go further and further until winter arrives. That I told her is why I walk. I also walk a lot indoors on the spot, makes me feel just as happy as on the treadmill or outside on the street.

Micmel

Good Morning lovelies~ I hope everyone’s doing okay and I am available for pocket duty. Marshmallow treats in hand. Hugs to all. Much love

mara51506

Hi Mel, glad you have treats. I have met my step goal with 3 outdoor walks. Had a good cooldown period between each walk as it is really humid but still feeling good today. My friend asked me why I want to walk so long and far and I said because there is really nothing else for me to do. Waiting for the weather to get cooler so I can plan another cross city walk. I've gone to the south of the city and the north of the city, need to try the west end as well but not until it is cool and I can plan the route as well for rest stops and snack breaks.

In everyone's pocket that needs it and thinking of Candy and her sister as well as Laurie.

Micmel

I think how long an often you walk is amazing. I would answer “because I can”. That’s like conditioning and building your body. Ask her why she does something she enjoys. People are funny creatures sometimes.

booboo1

Hi Mara,

You are so sweet. I’m feeling better than I have in a very long time. The ugly chemo is leaving my body slowly, and although there was damage done (no feeling in 3 toes on my right foot; rod in my leg), at least I can still get around. Not that I’m going anywhere. Covid here is crazy, so I stay indoors because of that and the heat. I really don’t like FL in the summer!!!

Anyway, we all admire your walking efforts. You really are an inspiration.

I was thinking how much fun it would be to have you and Mel fly down when it’s cold and the 3 of us can go pickup Tanya and have a huge gabfest. If my visit with Tanya is any indication, we’d be trying to outtalk each other! Of course I’d want to invite 50sgirl, Mae, Karen, KBL, Rosie, Candy, Moth, Emac, khl, Trish, SeeQ, Goldens, and Kitty (if I left anyone out, please forgive me). Oh heck, let’s just have a reunion somewhere. I’ll bet we’d be like old friends who have known each other forever.

I’m available for pocket duty for anyone who needs it. I’ll bring the Crunch-a-Munch….I’m totally addicted to it.

Love to all,

Micmel

illimae

Today is the 4 year anniversary of Hurricane Harvey’s landfall and I am enjoying the current calm and remembering the enormous stress of radiation delays, emergency contracts and being trapped by closed flooded roadways.

Remember how fun this wasn’t! I do.

KBL

Thank you for the shout-out, Booboo. I’m so glad you’re feeling good.

mara51506

Laurie, don't blame you for hating for hating the FL summer, our temperatures feel just about as hot as yours. Thank you for your kind words! If people did get together, people who could get there could meet in person and have some of us in sort of a zoom meeting. That would be great.

moth

I've started steroids for my shortness of breath and cough so I'm getting steroid loopines lol. On the plus side, they seem to be helping already so I guess that's a good sign.

A few days ago, I made a Taylor Swift homage reel (dd filmed me & fixed up my wig hairstyle) https://www.instagram.com/reel/CTAcCd7p-W0/?utm_so... I'm ridiculously happy with how it turned out.

MIL still in hospital, waiting for a transfer to a convalescent/rehab place to try to improve her mobility after breaking her pelvis.

Booboo I'm glad you're feeling well as the chemo drugs start clearing your body. Candy, sending you support!

sending hugs to everyone

mara51506

Moth, beautiful video and hairstyle. I love that wig, it is beautiful and you look beautiful as well, good job on you and of course your daughter.

Hoping your MIL gets moved soon so she can start healing as well. I am also glad the steroids are helping you out.

illimae

Wow, very nice moth, love it!

Rosie24

I'm in the middle of this book, recommended by Jaycee49, who we recently lost. She said it was a beautiful book, and I'm very glad I gave it a try. It's about a young couple from Manhattan who move to Ireland. Thanks Jaycee/Janet 😊

Karenfizedbo15

Go Moth you look fab. Booboo SO glad you are feeling more like yourself just now! Mel made me laugh AGAIN.

booboo1

Moth,

I echo what Mae said…WOW. Is that really a wig? It looks real and so beautiful. I love that you express yourself like this. Keep ‘um coming. Seriously, very cool!

This brings me to something else I’ve been meaning to address on this site. You used #metastaticbreastcancer on your Instagram account. Thank You! I am going to start using that everywhere I can to bring awareness to this disease. My obit, for sure, will include “passed away from Metastatic Breast Cancer”. If we don’t say it, write it, bring it to light, then who will? If people everywhere understood how many of us there are—up to 30% of those who get breast cancer go on to fight Stage 4 disease—I wonder if more would be done to fight for a cure.

Ok, I’ll get off my soapbox now…

DodgersGirl

Moth, Hope the steroids do the trick.

I am still on home oxygen. When I did 2 stints at 5 days of steroids due to pneumonitis earlier this year, my onc did tell me I could take a small maintenance dose of steroids more long turn to keep SOB at bay. I am sure you already know that but mention it as FY

moth

DG, the issue with the steroids for me is that it means I can't do immunotherapy if I'm on them so that would mean a whole treatment change if I need to do them long term I'm hoping we can just pulse and stop. At this point we're not sure if the SOB is from inflammation or a new met. Still waiting on CT to actually nail down the cause.

Bummer you're still on the home o2. That definitely cramps your style. Otoh, not breathing also cramps the style....

Yes, that is a wig! Dd did it up in little braidy bun things. We were copying taylor's look for her album art for folklore. This was the vision board :P

The wig for anyone interested is "Stop Traffic" by Raquel Welch; RW Vibralite Colors: Shadow-SS15/24. It's got a bit of the bigger the hair the closer to jesus vibe - maybe I'm too small for it? - but it's cute. And it really is a head turner. Men 40+ swivel for that stupid wig lol. My other wig is more admired by women...

I'm thinking of doing a reel about my 2 wigs & my silly ponytail wig too... actually I'm also thinking of buying more wigs. (This could be just steroids talking right now lol)

Anonymous

I LOVE that wig! Do another one with all the options so we can vote for our favorites

I dunno if its an aging or cancer thing, but I am all about elevating my short hair upwards through the use of all sorts of goo and clay. Thankfully my hairstylist supports this way of life and knows how much I like short hair that sticks out (and up!) and cuts accordingly. I figure when I get to wig stage then I can start experimenting with colors like I've been wanting to do for years.

Kittykat9876

Moth, I've been following you on IG without knowing it was you, I love how your DD did the braiding on that wig, you'd never know if you weren't told. I hope they can get the SOB under control without the steroids so you can start back on your immunotherapy, I'm also hoping for a good recovery for your MIL.

moth

Oh hi Kittykat, lol, that's funny that you were following me without knowing it was me One day all of my online worlds will collide somehow!

booboo, glad you appreciate the hashtag! It's slowly becoming a thing on social media. There are several tags active on twitter & insta, #mbc #metastaticbreastcancer #thisismbc #busylivingwithmets #stage4needsmore but it's still swamped by a lot of the pink froufrou save the tatas fluffy positive stuff. And even the mets social media is often very distorted, esp on instagram. I'm hoping to carve out a wedge which is a bit more about the reality of cancer, but also without being maudlin or sentimental...

candy-678

I visited my sister in the Nursing Home today. Had not seen her since Friday. Friday I got my Covid booster, developed a fever over the weekend, heard that a GI thing was going around the Nursing Home, and found out Tuesday that a staff member tested positive for Covid and they are in lockdown (but I can go in since sis on Hospice). They rapid tested me on entry (they had been doing that already) and now I have to wear an isolation gown, gloves, and a faceshield (with my mask I already wore).

I got my sister to smile a couple of times. Then she was confused, and knew she was confused. I stayed 1 1/2 hours. This is so hard. I cannot go daily as I know the Nursing Home would not like me coming that much. Maybe go back on Friday or Saturday.

GoldensRBest

Candy - you are an angel. God bless you in this walk with your sister.

I came to our daughters yesterday to help with granddaughter who is a very busy 4 1/2 year old. Older boys are pretty self sufficient. Staying till Friday. Daughter is working from home and the kids are done with summer camp. But haven’t started school. I’m exhausted.

Be well all my friends. Love to you all

Micmel

Candy~ I am so sorry you're in the thick of it. I'm sending good thoughts for you and your sister. When my father was in hospice I went almost everyday. I didn't care what anyone said. Family is family. I love that you are fighting to get there. I smiled when you said you made her smile. Be gentle with yourself. Hugging you gently.

Karen~ sorry sometimes they hit, then blurt out of me.

It's so nice to see all of you. Moth gorgeous idea gorgeous gorgeous video. You go girl. I'd be falling all over the place. I'm such a clutz. You're beautiful. .

BooBoo~ hi sweetie pie. Love ya !