My Husband, My Life, My Love, My Family, My Cancer
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Philly,
That sounds good. I hope your MO calls you soon to provide any additional information, but it sounds like stable to me.
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Philly I love your dad. I hope you hear all good news from dr soon.
Tanya
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Nice Philly, glad you got some news and you can relax a bit.
Hi to everyone 👋
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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
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LoveFromPhilly— congrats on what sounds like a stable PET!!!
👋👋👋
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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
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Well done Philly. No way could I remember everyone, even though I very much value everyone!
Mae how’s it going?
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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 💕💕💕
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Mel, will be in your pocket for your next scan.
I don't blame you for being annoyed though happy PET is stable Philly.
I did go out today to get chocolate from Walmart. Not too much walking as it was VERY windy so took the shortest routes to the bus stop and back. I am a bit tired post infusion yesterday and doing so much. Will kick it up more tomorrow though.
I left my kleenex in my back pocket of jeans and of course washed them. What a mess. Sent them through dryer no heat and it actually picked it all up. Very impressed. Cleaning out washer with little lint catchers to grab any other lint since there is no lint filter.
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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
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Philly, your reaction to the doc's not calling about your scan is perfectly reasonable. I hope you can explain to him that scanxiety is a major quality of life issue. I used to go to a medical center that would never give results by phone. You had to wait for an appointment with the doctor, even if he was gone to a conference or vacation. So on a tip from another patient, I took to going over to medical records and filling out the form to request my report. Technically they could have taken two weeks to fulfill my request, but I acted casual and they always printed what I wanted and gave it to me. I think this is a good way to go as one as you know you can understand the gist of the report and are willing to hold your questions.
This does not help people like Sondra, where the radiologist has not even made a report yet. Can you plead your case with anyone? Stage iv, stress of waiting, etc. It's just not right that you have to wait so long.
Mara, good for you, taking charge. You know your own body. Regarding washing Kleenex, ugh, that happens way too often. But I recently started carrying pretty linen hankies so I can dab my watering eyes and nose with style. And hankies don't shred in the wash. I find them in stores that sell antique and vintage items.
I think “Pick the wee motorhome!" Is destined to become a slogan for us. It means pick what makes you happy.
Mae, you are the coolest. Rooting for you every day that you can go back to normal speaking and eating very soon.
I restarted my trial drugs yesterday, having taken a week off to recover from uncontrolled diarrhea and nausea that led to dehydration and a trip to the ER. Well last night was epic. I threw up a lot. In the middle of the night my DH called the urgent line at my cancer center and got prescriptions for dissolvable zofran and a scopolamine patch sent to the 24-hour pharmacy. Relief.
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Philly - glad to see that you at least have a sort of answer - you've been waiting so long its practically time to scan again! Love how proactive you were with just making your own appointment for Monday. You go!
Shetland - I hear what you are saying, and I think this is another one of those things where if you could just give the MOs a virtual reality experience of all the niggly things like side effects and achy bones and scanxiety maybe they wouldn't be so glossy about it (although I see in this thread some folks have some really awesome MOs).
I'm not necessarily stressed over the scan results for the cancer because I still have my primary and the primary has clearly changed, but I want answers about what is going on with my back/pelvis on the alternate non-cancer side or, failing that, a referral to a private specialist. Its great to have the NHS, but they are just overwhelmed and overall I feel like something important is getting lost in here somewhere. We are moving in two months to a new house, so I will assess then if I want to move out into private care entirely.
Took the day off today to go do something fun on a self-date, so I am going to go to a museum and then take myself to lunch at a place I've been wanting to try. Nothing fancy, just a day out of the ordinary grind of babysitting my work email!
Hello to everyone - have a great weekend!
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Pick the wee motorhome!
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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.
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Sondra, the self date is a great idea. Sounds like a good afternoon for you. Enjoy it. We will live vicariously through your excursion.
I shocked myself this morning by actually walking an hour with only one stop to get more water on the treadmill. Though I am a walker and this should not be a big deal, for me is is because even when I have walked outdoors or on the treadmill, the longest I have gone was 30 to a max of 40 mins. The treadmill was usually shorter because of the boredom factor. I am happy with this result and plan to continue it at least a few times a week. Have not had breakfast yet so I did not get the low blood sugar shakes since I am in ketosis. Had a lot of water and am going to eat something now. I am going out, probably to walmart again to pick up more black beans. I am getting addicted to having those with spinach and queso for dinner, adding crumbled tortilla chips as well. It is delicious. I feel like they help to somewhat make up for my chocolate addiction which is bad (I have no plans to stop eating it though). Other than that, nothing much on my docket today. I may go pick up a couple of kid size burgers at Harvey's which I love and they are not pricey. Cut in half, they make a nice snack and not huge in calories. We will see how it all pans out.
Shetland, oh I am sorry to hear about the throwing up in the middle of the night. Worst time if there is even a good time for it but glad you have a couple of really good drugs to help. I love Zofran. Keep a prescription handy as when contrast is injected at my scans, I get intensely nauseated myself. I also occasionally take them if there is a hint of nausea as well. Hope it is resolved for you. The Kleenex was really old since I actually use paper towels now. I dab my nose not wipe so I have gotten used to using those. They don't break up. I even wash the ones I like to use when cleaning things like the countertop or sink. I just stick them in a mesh bag and wash them in my washer with clothes or anything else. Don't put them through rinse with softener, just water after the clothes are done. Then I squeeze the water out and hang them on drying rack. They come out the same as before within about an hour or two. Not even bamboo, just bounty sheets too. Save money that way. I know I can use rags and I do for some of the cleaning but like the paper towels with vinegar.
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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
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I am sorry for your niece and brother Mel, glad you could get out. I am on the bus heading home
Did get low blood sugar so ate in food court. Really good too.
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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.
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Hello all you lovely, strong women.
I have been busy the last couple of days. Church volunteer thing and grocery shopping and bill paying. Just busy enough I haven't logged on here. Glad I am back here to visit with you all.
Philly- Happy you are "stable" and can continue the same treatment. But totally understandable that you are upset with your MO. People - even our MO's - don't understand the scanxiety.
I too do what Shetland says she does---I go to my hospital Medical Records Dept and sign a release for the report. I have my scans done at our local hospital (small). I just walk in with my identification and sign the form. I act confident and matter of fact. Then they hand me the report. Some words I may not understand, but at least I know the gist of the report and can formulate my questions for when I see my MO. Boo- I have an online portal but I was told the ordering doc has to press a button for the results to flow over. So if they don't want the results seen by the patient until they discuss with them, the results won't flow over.
Shetland- Sorry to hear you were so sick when starting back on the trial meds. Good Grief. You have been thru so much with this treatment plan.
Another quiet weekend planned for me. Good.
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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!
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Karen ~A very well deserved rant! It’s all ridiculous no matter where you are. I had to sit In front of a judge and let him determine my fate. My financial fate! It sucks !
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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.
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Mara- Wish we had snow here---I love winter. Sunny and in 40's here today. Supposed to be close to 60 tomorrow. Spring is on its way. Have fun tonight visiting with your friend.
Quiet day here for me. Doing laundry, vacuumed and mopped this morning. But good day. Enjoying the sunshine coming thru the windows and the quietness of home. The simple things.
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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.
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scanxiety in full swing ladies Ugh!!!!!! Going to be a long week. I scan Friday. Bloodwork the day before, I’ll get my markers. I will be holding my breath. This is so horrible that we all have to go through this crapola pile oh sh*t! I try to rationalize it in my Head, you can’t do anything to change it anyway So just calm down and accept what ever happens. Blah blah blah it sounds like to myself even thinking it. Didn’t sleep good thinking what’s this pain or that one? That’s kinda new. It’s torture. I scan Friday bright and early. Raspberry drink in hand I’ll roll in after nine months. Feeling like a little scared kindergarten child leaving for the first day. Un sure what’s coming. I hope I can resign myself to whatever happens is just the way it is. If I have progression then. I may just loose my mind. I am on that edge again. I don’t like it one bit. I know you all understand completely! When is enough enough for us all to be put through. One person can only take so much. 😞 yuck!
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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.
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Mel,
You are going to be fine. Either way. I’ve had progression the last 3 scans, so I’m on the good stuff. Yup, no hair but that’s okay. I am not the least bit worried. God knows when it is my time and yours. So I don’t sweat it. Why bother? You have many, many other options to try if/when your iBrance days come to an end. I don’t respond to a whole class of breast cancer drugs, but there are many others for me to try.
I hope you don’t think I’m being insensitive, because you know how much I love ya! So, cheer up my friend. You will get through this scan and many others. I’m praying for you and all of us
Big love.
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In your pockets micmel and moth. ❤️
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I am also in pockets for anyone who needs it, whatever food, wine or whatever too. Mel and moth I am also here for you. Mae always good to see you as well.
Today is not super active yet. Hoping to finally get my stationary bike sold today. Wanting to put up some sort of shelving for extra kitchen storage instead. Not sure yet. I also procrastinated for months about selling it. It was given to me in 2015 when my old one died and that was how I exercised so it had an emotional attachment BUT I know too many emotional attachments can lead hoarding behaviour. Hope it goes today. Waiting for someone to come for it at noon.
I also had a very good time at the wine bar. Had a 9 oz glass of Riesling white wine at waitress' recommendation. The charcuterie board was pricey but very good. My friends company was a pleasure and she paid. All I did was order a sample of some skincare products she likes but there you go. We have committed to getting together much more often which is good for me. I was also surprised I did not get buzzed or sedated which is usually what alcohol does. Must have been the food and all the water we had. Wasn't even tired. There was a fellow singing the blues right by our table so we had to practically shout at each other to hear but still a very good ambience all told.
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happy Sunday funday or maybe rest and heal and relax and hold space for ourselves day!
Mel I’ll be right in your pocket! You’ve got this!
Thank you all so much for your thoughts and love and support regarding my anger and frustration.
I think I mentioned I went online and booked an appt to see my MO tomorrow since he hasn’t called me to discuss results.
Well - that caused a little flurry of excitement and the nurse called me on Friday to ask if I was okay and find out why I did that. I told her I was bummed that my MO hadn’t called me yet. She was apologetic and surprised that he hadn’t. Guess it slipped his mind. He’s usually pretty good. So she then had the NP call me back and she said that while she is unable to read the scans themselves, she told me that the report confirmed that CT scan results that everything is still the same. I just needed to hear that and talk it out!
my MO will supposedly call me tomorrow so we shall see.I don’t think they realize that while they are busy treating so many people, we as the individuals in their care are hanging onto each moment with them, each conversation, to be reassured and and find out what lies ahead. It is very scary to be so dependent on someone in this way.
I may actually tell my MO this. I don’t want to make it weird but I do want him to know what’s in my head.
Love,
Philly
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