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

hi friends!

Micmel I know...they def wouldn’t have to wait... here’s what I know so far..

So my dad got impatient and called the nurse to find out what's happening with Petscan results. Apparently my MO has been in meetings non-stop plus a a full schedule of patients. She was able to tell my dad that my MO said at this time we are going to keep the current treatment going yay!! But she said she couldn't go into the details of anything. I am happy with this news! My MO should be hopefully calling me sometime soon, and give me more details when he can come up for some air.

I am taking this as good news and clearly there is nothing urgent. I am thrilled to be staying on the same treatment plan

Philly I love your dad. I hope you hear all good news from dr soon.

Tanya

Thank you everyone! My dad is a true gem! He doesn't mess around but he is always kind, polite and honest and sincere. A great role model!!

Hi Mae! How's it going?

Hello to everyone I know I forget some names sometimes but gonna give it a whirl! Mara, SondraF, MJ, Rosie, Micmel (hows that sinus infection? hope it is all gone! Lets MP soon!!!), Tanya, BevJen, Lakewoman, Curious, Chico, Chicagoan, CANDY!, Dodgers, Ruror, Karen, Kate and Lily WELCOME!!, moomala, booboo, Shetland, santabarbarian, Frisky, moth, Simone and Legomaster. Sorry if I missed anyone!

It DOES feel so good (to me) to see people waving at me and saying hello!

Love and hugs (to those accepting one today!)

Philly

Philly~ awesome awesome awesome ! cant wait to MP! Looking forward to it. I am set to scan the 6th. Ugh! Knew it was coming soon. Come on Ibrance keep up working !

Waving to Mae... love to all

thanks friends!

Needing a moment to vent here...

So I AM actually feeling like kinda hurt/angry/frustrated/annoyed?/maybe it’s the meds?? that my MO hasn’t called me to discuss the details.

I get they are busy, but it feels like we’ve worked quite a bit to get this dang petscan approved and after ALL the fighting and paperwork and phone calls and 2.5 months of waiting and after it was initially ordered by my MO, to not get at least call to let me know what it shows?

I want the details!!

I want to know what it shows!

i am THRILLED to stay on my treatments but it just seems like a common courtesy, especially since we specifically had a convo at my appt last week on Wednesday that he would call me as soon as he gets the results.

Am I overreacting????? I’m actually tearing up over this, I’m so annoyed. Is this the damn hormonal treatments and medical menopause acting up?

Soooooo I decided if he’s not gonna come to me, I’ll go to him! and I booked myself an appt through the online portal with him for Monday morning.

Such an easy solution!

But I still feel annoyed. Hopefully it will pass.

Thanks for letting me vent.

Mel keeping you in my thoughts as the scan day is approaching for you 💕💕💕

Mara~ I do the same thing with my tissues. It's a mess and it goes everywhere. My poor DH is so sweet he never complains. I try to pick them up. It goes all over the floor and carpet! Good for you for getting out even in the tornado winds. Holy moly. It's finally calming down here but wow. 48 hours of high winds. It was a mess. No snow this winter so far but one 5 inches. I hope I didn't just jinx us lol. I don't mind one big snow storm. Per winter. But the shoveling is a bitch. I know my dad will do it, but he works all day, it just piles up all afternoon until he comes home. It's stressful, because I used to be able to do it myself. Ugh. Makes me mad.

I'm giving a shout out to my new friend, I hope she sees this. She needs our support guys. She's new to this diagnosis, she's scared. I want her to see our living room of fighters. Pink butterfly, were here if you need a place . Welcome to-our living room. Hugs as well

Philly,

First of all, I love typing “Philly”. I am from just outside of that great city, and I have to admit I miss it....especially those cheesesteaks! Oh my, are they good.

Anyway, I was wondering if the place you get scanned has an online presence. All of the doctors I’ve seen in FL have online portals. After my scan, I can login and see my results. I don’t have to wait. Of course, there are many things I don’t understand, but I can usually get the gist of where I stand. I am hoping your scan facility has a portal. Afterall, it is YOUR data.

Praying for good results for you.

Hello lovey ladies~ today has been pretty good. The wind has died down so I can come out of the cave. Have. A few errands to run. Took care of one of them. Just one more. Then I’ll settle Into my cross stitch. My niece is up and down and up and down with her kidneys. I saw pictures from my sister of her legs and I am shocked that a hospital would allow someone. To go home with legs looking like that. Welts and sores on her legs and they are so swollen and puffy like a blown up latex glove swollen. I know cancer is bad and I hate it. But I’ve always said, there are so many things that we as humans battle. She is 39 years old and in the beginnings of kidney failure. Not just one. Both. Her son is 5. 💔. I am 49 MBC for me. Folks as we all know My oldest brother is 59. Had a massive widow maker heart attack last year in the summer. Things are vicious! No matter what you face, we all must dance. We just don’t know what song we’ll be dancing too

Philly, your anger is absolutely justified. Your onc is in business. He is a professional selling his services and doing a very shitty job at customer service. Timely delivery is the essence of most businesses and he does have standards of courtesy, humanity and timeliness to uphold. But lots of docs, once they don the white coat, get the idea that they have been elevated to some station above the mere peons they service and are not beholden to the rules of polite society. Wrong! I understand that docs are busy. But there is a fine line between busy and flippant and your onc is not paying attention to it, it seems.

Shetland, it sounds like you've been through the mill and back and I hope to heaven things level out for you. You must be so tired of it all.

Micmel, it sounds like you need a hug. Shove over, I'm settling on the sofa beside you, getting this pillow puffed behind my back all comfy, there, a fresh cup of coffee for you. I'll just get my feet up here so we can have a good view of the room and all the comings and going. Maybe Karenfz will drive through in her wee motorhome. Hoping that Mae gets her voice back so she can tell us about her rockstar / global gastronomic adventures (her life sounds the most exciting, except maybe for the wee motorhome).

Nothing exciting to report around here. Have two dead chickens in a feed sack and something dragged the feedsack into the bush, yanked out the chickens and chewed on them. I'm out there trying to figure out what might be killing my chickens and then coming back to gnaw on them later. Raccoon? Fox? Weasel? Coyote? Bobcat? Skunk? I don't think it's the local moose. He just eats my blueberry bushes.

Hi All,

We too have had terrible weather, wet, cold and windy. Horrible. Philly and Sondra, I too have had issues with getting results back.... we don’t have a remote access system as Sondra knows, we just have to wait on the MO appointment and they need to wait on the radiologist reporting, which is what takes the time if they are short staffed. I feel for them as they are just as frustrated as us....but they are not on the receiving end and we deserve better. How long does it take to make a call... 1 minute maybe?

Shetland I hope you can get on top of these new meds, nothing worse than the meds making you feel sicker than the thing!

Mara, keep it up walking wise. Sounds like your confidence took a bit of a hammering, but you’ll get there!

Love that folk have picked up on Pick the wee motor home.... and we have! Definitely an example of how we should probably be living choice wise if we can. Just need to actually find it now cause a new one is out of the question money wise. Yikes they cost a bomb!

Meantime we’ll hire for a couple of trips just to make sure we’re making the right decision spec wise etc.

Oh and I’ve been asked to participate in a meeting with the UK dept of work and pensions ( DWP) about my experiences dealing with welfare/ benefits when living with a terminal illness. This after I gave a phone interview requested by the charity Marie Curie who are campaigning in partnership with the Motor neurone Disease charity re getting the 6 month rule abolished i.e. unless your specialist writes that you only have 6 months to live, you can’t apply for benefits under their special rules. So you have to go through due process which takes months (6 in my case) and be rejected or put in front to a tribunal panel ( pretty stressful) as I was and then still refused....they didn’t even have the guts to write that I was stage 4, only that I had breast cancer. Apparently you need to be unable to feed or dress yourself in order to qualify.

Thousands of people are dying whilst waiting for decisions from the DWP whilstMOs are rightly not putting a ‘sell by’ date on us.

I know you guys in the States struggle with the lack of welfare too and we do have the NHS, but benefits are a real nightmare and most people won’t put themselves through it if at all avoidable. I certainly won’t go to tribunal to be grilled again. Scottish government are reviewing the 6 month rule, hopefully the UK government will do the same.

Soap box over!

Karen I agree with everything you said. When we are dealing with a terminal illness and need disability benefits, it should not have been so hard for you. I don't get much, but it was fairly easy to get on disability. My doctors filled out reams of forms with dx etc and then I had it. It never increases because the part that is covered by my province goes down when the part covered by my federal government goes up. Gradually I will price out of it.

So I decided to try a walk today after a significant snow fall. I wanted to get milk and more burgers I like since the restaurant is about half an hour away, then got the milk on the way back. I almost turned back due to sliding backwards on unplowed sidewalks. Mixed up walking on side of road to the actual sidewalk. It got a little easier because the sidewalks had been mostly plowed while I was in the restaurant. Very tiring trip, but glad I made myself do it. Need to keep up my energy as I am going out tonight to the wine bar. Not overly used to being busy in the evening but looking forward to seeing my friend Tara. Have not seen her for a few months and she is a good friend.

Candy, our weather is changing too. Even with all the snow last night into today, a lot of it is melting due to the sun. Going to pull out cleats if walking tomorrow morning since the freeze/thaw cycle will of course include ice. Looking forward to going out too. May even allow myself a glass of wine instead of a mocktail. Living on the edge for me.

Laundry sounds good. I only did one load. Have not done housework but that is OK, no company today.

someone on these boards said to me during my stage 1 treatment - you don't have to be brave, you just have to show up.

Micmel, bring all your anxieties and fears in a large tote bag and we'll take turns holding it for you.

I'm repeating scans on Wed. I just did scans that found the mets on Feb 10 and 12 but if I'm going to join the study (which I don't even know if I qualify for) then I need scans which are within 4 weeks of the study enrollment. If I had progression in the past 3 weeks I think I will fall on the floor and not get up.

In your pockets micmel and moth. ❤️