My Husband, My Life, My Love, My Family, My Cancer
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HI all. Watched PHillies lose again. geesh. Waiting on Hurricane Debby. Looks like we will be on the "dirty" side, so increased risks for tornadoes, but they are warning us more concern for significant flooding. Just need to bring in potted plants and move some glass tops off outdoor tables and we will be fine, I hope.
DH did not get an xray, again. So I made him leave my bedroom. Can't talk to him as all he does is cough. Can't heart TV. I'm not being mean but he is stubborn. It's now 17 days since he first started with covid.
Hey Mara I cooked a pot roast. Gosh they are expensive and small, but I haven't cooked a good meal in awhile. I sat on a stool and used my walker and the crockpot did the rest. It's too hot to use oven. AC is set at 74 and it was 79 inside and 95 outside. Hate to see our electric bill.
In pockets for scans and stable and pain free days.
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Ive had non stop problems with my mouth. The only thing that helped was that rinse and salt water rinses. The salt water made a difference for me. It wasn’t pleasant, but it relieved some of the pain. I’m so sorry. I know how it feels. Chapstick worked Vaseline didn’t. I think it’s just hit or miss . I have trouble eating as well and my mouth bleeds a lot. I’m so sorry this is happening. I know the rinse is good. I did have some succuwirb biotine for a while when I changed things up to see what would work. I’m so sorry you’re going through this honey. I know how it feels. And so does Tanya. Wrapping you in big hugs. Love to all.
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Thank you all for the well wishes on my stable scans. I am sorry to read on here about the struggles you all have.
I was looking on my patient portal. The scans are not there yet- it takes 7 days- but the MO note is there. Mentioned my telehealth visit versus in-person, due to my vehicle being in the shop- yes it said that. But then went on to say- "no complaints of headaches, back ache, or joint pain". WHAT. I hurt all over with the arthritis. Shoulders, thumbs, low back (chronic for years), and right hip. And it said, "no problems with energy". Huh? I tell him I have fatigue, and he had to do that paperwork for my LTD a couple of months ago where we talked about how I cannot work due to the fatigue. I know the doctors are busy, and he did document about my scans looking good and to continue the same regiment, so the basics are there, but no wonder when someone reviews our medical records they don't get the true story of how we are doing. But what can we do? I cannot call him and say "correct your notes". Crazy.
I have been thinking about stable for 4 more months, until the next set of scans. Then I was watching Shawshank Redemption last night—— GOOD MOVIE. Andy says "Get busy livin, or get busy dyin". I want to live for the next 4 months. But how? I cannot go back to my old life. I cannot get a job. I cannot feel good like I used to. But I have the desire to do- - something. The Fall season is coming. I love Fall. I want to do, to have friends, but I don't know how to go about it. But I am going to try. Look for opportunities. Small things. Oh how I wish I had more friends or family. I am pretty secluded.
I wish you all well.
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irish, I'm sorry your DH won't get himself checked. I'd keep my distance, too.
candy, I've had occasional notes like that. Frustrating. No complaints? Seriously?
mel, I wish you weren't having ongoing issues with your mouth. I'm thankful that the dexamethasone seems to be keeping mouth sores at bay for me.
My blood sugar (FBG) was 122 this am. It's usually between 85 to 98. I'll check it again in a while. Elevated FNG is a SE of Afinitor. Hopefully, it was just a wonky reading. I did have one reading of 25, but my DIL was here at the time and said to retake it. Her dad is Type 1 diabetic. She said I'd be seriously in trouble if it was actually 25. I re-took it, and I think it was closer to 85. I track my numbers on an Excel spread sheet. I added a FBG tab to the CBC, CMP and LIPID panels. Did I mention I love spreadsheets?
Waving hi to everyone.
Carol
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Oh Candy; I feel for you. I spend a lot of time at home, looking after my special sons. (They will eventually move to a group home, but they currently attend adult day programs.) It can be isolating. I often can't leave the house to have coffee or lunch with others. There might be some volunteer work you can do from home. I belong to a small church-based charity where we help people who are struggling to pay their rent and utilities. Most of this work involves calling people, the utility companies, and landlords/property management companies. It feels good to help people (and to talk to articulate adults) without leaving my house. Just a thought. ((Hugs))
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Carol, I had FBG issues while on Afinitor also. I hope it works well for you but it was not a good drug for me and I wasn't on it long. Unfortunately for me I was also on a steroid for lung issues right after I stopped it and had crazy FBG issues for a few months. I don't want to go through that again.
Candy, make sure you discuss the notes issue with your MO on your next appointment. It is part of a permanent record and needs to be accurate. Just do it tactfully. "I noticed you said…perhaps I didn't communicate things well in my present state…etc." Most doctors will acknowledge a correction and note it during your current appointment.
Irish, husbands can be so stubborn sometimes! Ugh! I agree with you and would avoid him also.
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Mkestrel, in your pocket while you deal with these issues, maybe doc can prescribe something to take care of your lip to aid in healing while you still add vaseline too. Rinsing with baking soda can also ward off mouth sores. 1tsp to 1/4 water. Rinsing can help with metal, rice, eggs, peanut butter and pasta may be good food options.
Laundry, nothing heavily soiled so shorter cycles and still using the bigger spinner. Seems to work just fine right now. Waiting for new one. I will be interested if both washers can fit.
Ate a food bowl, had quinoa, some black beans, rice and bit of chicken and sweet potato. I did not add more food to it, just sour cream and onion seasoning along with sour cream due to the package mentioning spicy. I took so Old El Paso cheesy taco hard shells for crunch, mixed it all together, was very good but filling, I am stuffed. I am also drinking the white milk with some tea, just to remove parts of the taste that is not pleasing. It is mostly milk and some of the tea throughout. I also managed to forget to put eggs in fridge after using. Put them back and will use the floating test to see if they are bad, if not floating will eat them. They were out less than 12 hours I believe in a cool house as well. If floating, toss them.
Hoping good day for all
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Candy~I agree with intolight , that’s how you had your disability taken away. Incorrect words, and statements. What if social security does a check a comes across those notes. ?? I would and have already asked a doctor to correct incorrect notes. It was actually the one I had that issue with. The one I honestly am not sure about. But I told her. That’s incorrect please correct this. I explained why. She quickly changed. It. I do not play around with that stuff. It worries me all year. I just had my review. It’s all about the wording used. Hugging you for stable…
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Candy, I am in the same situation as you. I am not seeing DB or SIL as often and they were my main people. IRL, I mostly interact with Paratransit, hospital staff and chatty cancer or other people having MRI or CT scans. I enjoy the contact that way. At home, I am busy boosting up my budget or watching a lot of youtube
If you want to help without exposing yourself, look up online community groups in different subjects you are familiar with. Look for the ones with zoom so you can actually talk to them. I know you are a cancer expert but there must be other things you are talented at that you could talk about with others. Shared interest video chats or something where you all watch the same movie at the same time on video and get a movie theater type experience where you all react together. Lots of ideas that would work I am sure.
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Thanks micmel and mara for tips about rinses. I'm losing my sense of taste. I couldn't taste my strawberry rhubarb pie and ice cream just now. Just tasted mushy and cold. I'll try to put up with this through next scans but I'm not sure I can put up with this very long.
About doctor's notes, it seems they use templates that are just edited if something is abnormal. I don't think my records are very accurate either. Notes don't always record what I remember saying. They mess up the rib numbers on my mets rads reports. It's really aggravating to me because I worked as a medical transcriptionist and had to get everything perfect. I was expected to catch and report discrepancies. Now they just use auto templates and speech recognition, leave all the errors and put a disclaimer at the end. If you see errors, you can ask for it to be corrected.
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Candy You have some good suggestions here to keep social interactions .Here is a good site I suggested to my son. I have seen several online groups on here. Agree with getting the medical history corrected. Yep everything is a template now and they add a little here and there.
Irish Hope you are spared the wrath of Debby. I sure hope DH gets himself a Chest xray to be safe. These men can be so stubborn…annoying! Your just trying to avoid him landing in the hospital. Sya safe.
Sorry for all the ladies suffering with mouth sores. Fingers crossed that improvement is on the way. Hugs
Stormy day here but we sure can use the rain. I'm faking Fall here lol. Making chicken pot pie with a side of stuffing and cranberry. Maybe I'll light my Pumpkin candle after dinner.
Hi to all here, always thinking and praying daily for the group.
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@mkestrel moith sores were rough for a few months along with a root canal. I like the salt mouthwash with the prescription mouthwash. Also I was prescribed ibuprofen for swelling and I think the combination along with amoxicillin finally reduced the angry mouth. My onc took me off treatment for a few extra days too and I’m not looking forward to resuming bc I’m thinking of sores coming back
candy I found out that every message I send to my doctor via my patient portal becomes part of my permanent patient record. So if you don’t want to directly confront that’s a way to get it in.Cookies54 your dinner sounds delicious. Please light the pumpkin candle 🕯️. Autumn 🍂 summer vibes.
We have the rain and a little wind here today. Staying inside and watching Olympics.
Take care all
Tanya
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Cookie, I am on my way for dinner. Pot pies are one of my faves.
I am not really feeling like cooking for supper, just made some keto chips out of some shredded cheese, seasoned with taco and sour cream and onion seasoning. Just bake at 375 for 10 to12 minutes, let them cool, they will come out crunchy, will also eat some of my peanut butter biscuits that I enjoy as well. Still not as good as the pot pie.
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candy, congrats on stable!
I've given up on my MO's notes, he hears what he wants to hear. He has added many incorrect details in the reports and omitted some important information so far. his reports are no longer than a few lines. as for the RO, obviously she mixed up my medical record with someone else's, i sent a message to her office 2 month ago but her ego is apparently too big to consider my request for correction! regarding the headache as far as I know, cancer clinics follow a protocol, which update time to time, so they must ask these kinds of questions.
Intolight, a lot studies explain that lower dose drugs are as effective as full dose. so enjoy the dose reduction as your body requested!
Mel, mouth sores are the toughest, I am sorry you're dealing with it. I too heard that ibuprofen can help reduce the soreness as Tanya said.
Mara, I admire your stride. your posts motivate me to try different dishes.
I wish everyone strength and luck
Hugs
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Irish, was the pot roast good? Did you enjoy it too, I hope so. Good idea with the sitting whilst preparing it as well, makes it less cumbersome. As I already said, hope this was really good tasting to you too. I am sure everybody enjoyed the meal.
I have nothing on the agenda other than the usual stuff, laundry, budget boosting watching TV ads for money. I like cooking videos, go figure. Earned enough that most the next order for Walmart will be free. Getting to the point in eating out of pantry and freezer are finally yielding to some space. Does not hurt that I am good at stretching foods too and having them across multiple meals. I will need milk soon, white of course so if I want to make a straight pasta mix to serve with other stuff I can do it. I may decide to get something to put into the milk to make it taste better as cereal is mostly put in a spice grinder for the fiber boost. Cereal just does not give me enough staying power. Not sure what today holds, I do have hash browns in the freezer so eggs and hashbrowns may be good for me for breakfast. I am still eating some of the mexican and white rice mix and randomly adding them to my meals.
I busted out the smallest wee washer, that was an impulse buy, works well, can only put a couple things in it but it is fine so far. Agitation is the same as bigger, has the teeniest spin dryer as well, soak laundry and rinse for a few minutes too. I don't expect much, can only do small stuff
I do hope everyone has a good day, in pockets for everyone who may need me as well. In pockets for myself to receive my new washer or get refund as it is quite late and the other functions for now. I will see what happens.
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Medical records issue- I have noted multiple discrepancies before in all my different doctor's notes. I try to get a copy of the office notes, whether it be thru a patient portal or asking at the office and signing a release form. I like keeping my own medical records. Sometimes I just shake my head when reading the notes. Yes, they use a template and just add their own notes to it. I have found comments about listening to heart and lungs when the doctor never touched my body. Or, once, I read that the doctor suggested this, this, and this and No, he did not bring up all the items he listed in the note.
I have never asked any doctor to correct their notes. Maybe that is wrong. I understand Mel's comment about Social Security coming across that note if they review my SSD case. That is a fear. But I don't know if I should make waves with my MO by asking him to remove the comments he made in his note about my joint pain, as that is non-cancer related (arthritis issues), or about my energy level.
I am a type A personality and very detailed oriented. Most are not. I could be perceived as being "picky" if I would bring out these errors to my doctors. Like a problem patient looking for an issue.
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It seems really imperative to read the notes. I think they jot down what they want to cover, but they don't always get to everything in an actual conversation. I worry about the folks who don't ever read the reports. For example, I read the notes saying I should be taking a calcium supplement but I have no memory of the onc telling me this. Now, it may just be my memory is at fault . . . I'm by no means perfect in this regard! Since I've been very healthy all my life, I am really surprised at how much I have to be in command of my own health information now. It's a new world. All of us here are intensely interested. But what about people who are too scared or don't have the capacity to do this kind of study all the time? It's a lot of information.
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Candy-If the notes or anything else in my medical record are incorrect, I contact the doctor via MyChart and ask for it to be corrected. I don't view it as being "picky." I have a responsibility to myself to make sure that my medical records are accurate to the best of my knowledge. Certainly your joint pain and fatigue must be accurately noted.
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This is why my sister comes to my appointment with me. After my first appointment I received a phone call from someone who had my details - asking about making an appointment for genetic counselling - I had no idea who it was but I was very angry my details had been given out. When I mentioned this to one at next appointment - the response was - "oh, didn't we discuss that"? My sister and I had no recollection of that happening. I have come to the conclusion that my notes will probably reflect what one wanted to happen, rather than what did happen. I shudder to think how the conversation about denosumab was recorded.
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Shortly before my dx, I was in the ER after a motorcycle accident. Somehow, one detail of the visit was coded incorrectly and my HRT was coded as long-term opioid treatment (yeah, not quite thecsame thing). The codes were the identical, except one code had 2 digits after the decimal and the other had 3. I was actively and adamantly trying to get it corrected, because it could/would have created major problems for me with regard to my job. I was BS'd, flat out lied to, then ignored (no returned calls), by what I'll assume was lazy personnel. After my dx, and disability retirement shortly thereafter, it was no longer worth the effort. It's still infuriating to have been so disrespected and disregarded over what was clearly a clerical error. If it makes me "picky" to require a correction, then so be it.
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I am reading all your responses about the medical errors in our records.
Seeq- that error needed to be fixed. Being labeled as "long-term opioid treatment" could have followed you and caused all kinds of problems, not only to your job.
I looked at some office notes from my PCP, ortho, an endocrinologist I saw once, etc. There is AT LEAST 1 error in each note, some with more errors. Not glaring errors of a wrong diagnosis like Seeq, but just mild errors. Like I mentioned, a template that was used that said something about some physical finding when the doctor did not do that specific physical exam point. Or a wrong dose of med in the med list that is in the body of the note. I know what dose I am on, but it was not correct in the note. Case in point- - in my MO note in the med listing it says Lupron every 28 days, but in the plan part of the note it says "continue Lupron every 3 months". At one point I was on Lupron every month, but we switched to every 3 months quite a while ago.
Are you guys telling me that EACH doc you go to you read the notes and notify them (in person, by phone, or by portal message) that they need to fix the errors????!!!!! I cannot believe that you all do that. Yes, a glaring error is one thing, but to go thru the notes with a fine-tooth comb, line by line, and mark the errors with a red pencil like a schoolteacher, and then tell the doctor to fix his mistakes, really?? They would start to hate you. And you could put a wedge in your doctor/patient relationship.
Maybe I do need to message my MO about the energy comment since it pertains to side effects of the Lynparza, but I am not going to harp about my joint pain from the chronic arthritis when it is not related to my cancer, for which I am seeing the MO. Nor I am going to demand they fix the med list that says I use my Pepcid once a day, not twice a day as they show in my record. Choose my battles.
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Candy - I like to think there's a happy medium there somewhere between fine tooth combing/red penciling and "reasonable oversight". Glaring errors need fixing, but some minor things can be overlooked.
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I try to remind myself that if I felt the way I do now (exhausted, low energy, diarrhea every couple days, etc) five years ago, I would've have been panicked and rushed to the doctor to find out what the heck was wrong with me.
Now, with MBC, my MO tells me I'm doing well... FOR SOMEONE WITH MBC. She does understand the difference, fortunately, and isn't assuming I'm tootling about with no symptoms whatsoever. I'm anemic, have minimal white blood cells for healing, bruise easily, feel oh so tired, and of course the fear slips in at times - when is it going to get worse than this? The weight of that fear is something I have to release over and over again, it's like a new skill. I do read her notes after our visits, and she's pretty good at accurately conveying what I'm experiencing, but I wouldn't hesitate to correct something - she once wrote I was dancing for exercise, when I mentioned I sometimes shake my bum in my living room to 80's tunes... not sure that's "dancing" but okay.
Totally agree about choosing battles, also. We all have limited energy.
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sf cakes, shaking your bum sure is exercise. I've been doing that since trying to do parts of the Bye Bye Bye Nsync song that showed up in Deadpool and wolverine movie. I cannot do the turns but fairly steady on my feet if not lifting.
Ordered more groceries from Walmart, some frozen stuff, beans, doritos to add to meal etc, couple breakfast bowls as well, can likely get two meals out of it but I will see. This morning, I did make the mexican rice though accidentally left it too long, not burned really but stuck to bottom, was really hungry so added tiny amount of sour cream, sour cream seasoning, salt and tiny bit of the caesar. Need to work on getting stuff used up.
Hope everyone has a good day and in pockets wherever needed.
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@sf-cakes Some time ago on here, @tarheelmichelle wrote, "I'm not going to hang out by the
exitdoor. Not while there's abarand a dance floor!"6 -
@tougholdcrow and @sf-cakes, I am taking the opportunity to enjoy my life - I am in seventh heaven being able to go to gym, but I understand I have been extraordinarily lucky with side effects. In your pockets with support when you have those horrible moments and unwanted visits to the loo.💓
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Candy~ I always get my after summary and read everything. All release paperwork if I have been in the hospital. I’m crazy about it because that’s my income. I have asked I believe three times to change it. I usually wait till I see the doc again and ask them personally and express why. I know everyone is different and have certain ways of dealing with things. I just would never want someone to read something that wasn’t true and to loose something that was rightfully theirs . I always advocate for myself. No one else is going to do it.
In all pockets as needed sending love to all. We are having storms, I hope everyone in the path of Debbie is safe and sound. I was so upset to see the flooding. I hope it moves away quickly.4 -
Hi all. You know you get me a bit motivated to do something, anything, even if it's wrong. lol. I vacuumed and put up some laundry. Yesterday I made a big pot of chicken noodle soup for about 10. What we don't eat I like to freeze to be eaten on one of those yucky days. The roast was so good but I can't believe how small it was for $15. I think it was tip roast, not sure, but barely got 8 cuts of beef off it. Threw carrots in and used dales seasoning and some worchestershire sauce, a little water and we had fabulous gravy with mashed potatoes.
Next month means mri of brain and frankly it makes me nervous. The cancer in the lateral orbital wall, in the occipital bone and somewhere else that at the moment I can't remember (Skull) will always concern me. Debby didn't do any damage here, just a lot of rain but no flooding. When we moved to Palm Coast our best friends reminded to move west of I-95. Higher area and usually the evacuation zone is east of I-95. We've been lucky as no damage and we've been here coming up on 5 years. Knock on wood. DH still has the crud but sees his MO tomorrow. Hopefully then he'll get that chest x-ray. I haven't seen DH's blood test results, but up until now it's been 1 1/2 years, he has not had to start chemo for non-hodgkin's lymphoma. He's just real tired.. In pockets for all your needs and hope for pain free days ahead.
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Irish Glad to hear you guys did well with the storm. I know in NJ we are looking at a couple days of rain but nothing awful. Also happy to hear DH is going to MO and they can listen to his lungs. Wishing him well for his visit today. Ugh yes the anxiety of these scans is awful! Of course your pockets will be overloaded with all of your extended family here.
tougholdcrow Love the quote, gave me a smile.
Off to MO today for labs and visit next scan early September. We'll see what this bone lesion is up to, hopefully a whole lot of nothing.
Wishing you all a peaceful day🌺
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Irishlove, it is surprising how small portions are for the cost, it really is discouraging but I am glad you enjoyed your dinner. It sounded delicious. I am in your pocket for MRI and DH pocket to get a little more energy.
I did have to cancel and refund first portable washer, debated not ordering but decided to go ahead with getting another shipped, supposed to arrive tomorrow. I will be skeptical until it gets here and I set it up. Will still keep both. My current one with broken spinner does shorter cycles but I give it a few minutes rest and agitate again. Not too bad but replacing with one that works, may go with shorter cycles on that one as well to preserve the motor. I also did a payment plan which I always pay off early so that is good as well.
Got one of the breakfast bowls I will have at breakfast, it is a poutine vibe with cheese curds, bacon and eggs, other goodies too. I will heat up and see if I need to split it up into other meals. I also ordered a ton of eggs, they were out of stock of the smaller quantities of eggs so looking at 2 to 3 eggs in a day but that is manageable. Since I ate the whole box of mexican rice yesterday morning, will stick to smaller amounts of rice and eggs. Working to use up some of my seasonings as well. Still have the pot pies, hash browns and lots of canned goods so will not need anything major for groceries.
I am also considering joining a gym again. An inexpensive membership if I do go. Would be costly since I would simply take Paratransit there and back say twice a week, would depend, have to factor the cost of rides into a tight budget. I almost find it funny that I would stroll in with a cane and start walking a treadmill. Looking to use rowing machine and treadmill which I always hang on to the bar. Incline would be good as well. I will debate it or just take the bus during non peak hours and maybe save the paratransit for winter Bus rides would be free, I have time to think about it and figure it out. I always account for additions or subtractions in the budget.
Anyway, enough about me, I am hoping everyone has a good day, in pockets for all needing me, including myself to get stuff done that I want to get done.
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