My Husband, My Life, My Love, My Family, My Cancer
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Other thing I like is that you can also just put protein powder of some sort and a bunch of frozen fruit as well so no extra ice is needed. I used to use mio water flavor as well since I did not use to like the fruit itself. No limit to what you can do.
Speaking of loving food, check out this article that I got a kick out of.
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So, good appointment with my MO, continue Enhertu at the tolerable reduced dose and watch the unchanged enhancement. Next scans scheduled for September (last were in May) since I’ll be in town for the next brain MRI.
No plans for the immediate future but I feel like I really need a day or weekend at a river. I’ve been a water lover all my life and it feels like a biological necessity.
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I am frustrated at myself and the cancer.
Today I went to a church ladies group meeting. Visiting, talking, and a devotion. Good time. But afterward the ladies were going out to eat. They invited me. I declined. I had errands to run, one of which was to go by the lab and get some bloodwork drawn for my primary doc— thyroid test, Vit D level, etc. I went in the Lab and there was standing room only. I walked out before it was my turn, due to the wait.
I feel like I am walking in mud. I was sooooo tired after the church meeting and my errands. I just wanted to go home.
No way did I feel like eating and visiting with the ladies at the restaurant.
I just get so darn frustrated at the fatigue and yucky feelings. These women are in their 70's and flitting around with so much energy. Yes, I know some would say "just go do things. you will feel better if you do them". But I just feel so tired. I feel like sitting here and crying a good cry in front of the computer. I slept well last night. But I feel like I need a nap today (and every day).
I am 52. Why can't I feel as good as a 70 year old???!!!!!
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@candy-678 — I understand your frustration. It sucks to have had so much taken from us in addition to dealing with cancer.
I am basically home bound nowadays due to needing oxygen, not being able to do any stairs, diarrhea, and recent falls. Today, I am struggling to keep my SpO2 readings in the 80s even on oxygen. Just reading what you can still do sounds amazing to me.
I hope you can continue what you have now plus improvements in the future.
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Candy, in the same boat. Yes I do a lot of stuff at home but that is different than taking the energy to attend meetings with friends and then do medical things. Our bodies are not the same, meds, disease and older age and menopause all contribute plus what we deal with in our regular health. Give yourself a break, if you want to do more, small steps count at the same time while keeping yourself safe.
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Thank you ladies. I just needed to vent. I miss the old me. I did take a small nap today.
And, also, the last few days I have been having more nausea. This Lynparza works that way- - - I may not have nausea for a week or so, and then I have bouts of nausea. Waves of nausea, thankfully no vomiting, but I get tired of feeling icky.
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Hello lovely ladies. I hope this evening finds you all doing ok.
Mouth is really giving me a challenge I’m beyond annoyed and sad about the constant pain I’m in because of this mouth. Thick welts and swollen side of my tongue. The welts are all over and run down my throat. It’s driving me crazy. I’ve gotta say. Cancer is like swimming with sharks and your knee is bleeding. Constant attacks.
I think k about you ladies always. Hugs to you all.0 -
Good evening all you lovely ladies and gents, too. I've caught up on your posts and hope that those are struggling find strength in a new day. I think sometimes you have to take it day by day and sometimes, hour by hour. Mental health has been really hitting me hard. I never did receive any type of therapy in the past, even for severe childhood trauma. Here I am asking for therapy and all I get is unreturned calls from Humana for a provider. I think I'll try the cancer center next visit.
Back a few years ago there was a poster named Jaycee. She had MBC and MS and was always kind enough to post to support me and others with lesser stage BC (at the time) and MS. I recall her saying MS was harder on her due to the fact she couldn't find the ability to enjoy what time she had to live with MBC. Now I get it.. This MS attack is horrific, most in 12 years. And get this, due to shortage of neurologists I can't get an appt. till January. Plus Humana now has taken away monthly appts. with GP, to every three months, again due to shortage. A friend of a friend, age 33 with 2 children, was just diagnosed with b.c. and can't find the chemo she needs locally. She will have to travel 2 hrs. to Jacksonville. OMG, what is happening in our medical community? Forgive me for being so downhearted. Still in everyone's pockets for scans and improvement.
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Oh, wow, so much going on. I'm so sorry for all those who are hurting , physically and emotionally.
Thank you for the blender ideas. I think I will get some protein powder tomorrow to add to my food and drinks.
I have a friend who wants to get together with me. I just can't do it. She has SO much energy, talks a mile a minute and just wears me out within 20 minutes. Maybe DH can invite her and her DH to come visit on our porch. I can let her/them know (or DH can) that I'm not good for longer visits. I do have another friend, but she's easier to just hang out with. She came over last Friday and we sat on our porch and just chatted for about an hour and a half. She's my knitting partner-in-crime and yarn buying enabler.
I'm hoping I can sleep tonight. Last night I finally fell asleep sometime around 4 am and slept until around 7.
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omg I remember Jaycee. She used to post here. Just another example of ladies lost . I’m sorry you’re having a hard time Irish . So very sorry I know words can’t take away pain and fears, please know that I hold all you ladies close to my heart. It seems like everyone I know is struggling somehow right now. I wish could scoop all of us up and go on a cancer free trip where like on fantasy island we don’t have cancer for a week. I’m so sorry for all of us. I truly am. Hugs to all. Try to sleep. If only one night. I’ve got alot on my mind. Someone Very special to me is struggling. It’s breaking my heart on how helpless I feel. This life has been so hard for so many lately.
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mae Glad to hear your MO visit was positive. Water is mental healing in my opinion.hope you get there soon!
candy It absolutely stinks to feel like you stuck in a body of a 70+ year old at 52. I wish I had a magic pill to give you lots of energy to do all the things you want. Cancer robs us of so many things it's so unfair. I wonder if you feel like socializing next time is it possible to do part of the service/devotion? Thinking if you went a little late then maybe you would reserve energy to go out with the ladies? Idk just a thought…Maybe it's just the point of it all, feeling like I'm 52 and should be able to keep up with the 70 year olds. I understand and hope there are some better days ahead. Hugs.
Mel Ugh I'm sorry that sounds so incredibly painful! I can't even imagine my stupid little ulcers with chemo before hurt..but this.. Hmmm did you every hear of Milk of Magnesia with liquid benadryl for temporary numbing your mouth? We used this once for my husband and it did help him….idk just a thought.
Sunshine Sounds like you have gotten a little relief and experimenting with foods. Praying it continues in a positive direction. Don't blame you about your energized friend we love them and they mean well but sometimes we're just not in the mood.
irish My gosh what is going on with the doctor shortages, how frustrating. Your not being downhearted these issues are real and you need assistance. I think you are an amazing woman to deal with MS, cancer DH issues etc. It's ok to vent , your always so positive. I hope you hear back from Humana today, continued daily prayers.
Hope everyone who is struggling to sleep gets a good peaceful nap in today. Thinking and praying for all.
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emac, twice i have been told to get my affairs in order time is limited, I am still here. I have lymph ,lung and liver tumours and have had a pleural infussion 3 years ago, Try and stay calm and enjoy the days until your next appointment, easier said than done , I know ,i have been there too. Sending hugs if you need them.
I have been in hospital with what I thought was a severe UTI. It turned out my port was harbouring a strep. A infection and i had a blood infection. The port was removed. I have been on mega strength antibiotics 4 times a day. I am well enough to go home now, but would have to return to the hosital 4 times a day at 6 hourly intervals, until I finished the course which would be crazy . I am staying in hospital. I have been given a discharge day of next Monday, 3 weeks after I went to accident and emergency. Just counting the days .
For everyone going through tough times, my thoughts are with you. If you are feeling well please try and enjoy everyday, not just special days .
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Denny10, I am sorry about the port being infected but glad you are able to stay in the hospital. Here, I probably would be kicked out and told to either come back or be sent home to do it. Hoping you feel better soon.
Emac, I got the make final arrangements from the start given the IBC as the MO as a practical matter. Easier to figure things when healthier. I never allowed a prognosis as far as how much time left. I told her if she told me that kind of stuff, I would simply curl up and die. Here I am all these years later.
Mel, I am so sorry about your mouth being painful like that. In your pocket sending less painful thoughts.
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So I will never, EVER trust the NHS again. EVER.
Sunday once he got some rest/food and I got some perspective I realised something just wasn't adding up. The more he told me about what happened the more I suspected something weird happened. We checked the NHS app and the GP had the diagnosis listed as alcoholic hepatitis. He was somehow, somewhere along the line flagged as an alcoholic and treated as having significant withdrawal symptoms - got an IV of diazepam, a cupful of benzos to take at home and advised not to quit cold turkey. I dont know where the liver cancer diagnosis the doctor gave him came from, but the alcoholic perception explains a lot of other crap that went down. He has no symptoms of anything - no liver pain, no gastro, no reflux, no jaundice, no fatigue, no nothing. Course, no one touched him either as per usual in the NHS.
He didnt go back for further testing on Monday though the GP tried calling once or twice. No one once ever took formal stock of alcohol risk factors and he is a low volume drinker - maybe two or three beers a week, some weeks nothing at all, some weeks more if hes at the soccer match with his buddies. They made pure mincemeat out of BOTH inner elbows for blood draws and they used the big rig IV cannula in the back of his hand.
I am BEYOND angry about this, not least due to the absolute trauma bomb it threw in the house Friday night and over the weekend. He's seeing a private doctor next week for a full shake down check up and full blood panel with proper referrals to the right specialists if needed. If at that point we find out he has some sort of genetic issue that can cause liver scarring, fatty liver, or there is that non-alcoholic hepatitis thing happening then great! we can manage it privately and appropriately.
The state of general medicine in this country is absolutely dangerous but the frustrating thing is there is no one to really complain to and even if you could, it would never be fixed.
Overall - a good outcome ( I think) but I wont be comfortable until he has been given the all clear.
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Good morning😊. You are all on my mind today as usual. I haven’t been around here for 2 days since my Mammogram. It was a pleasant surprise. I had the prescription for ultrasound and core biopsy, so I was really apprehensive when I went in. It was very fast and easy. Best of all it was clear and they let me go home without Doc consult, or other tests. Just 6 month follow up screening. I want to discuss with my Onc the Question “Why do I have to continue Mammos in my negative remaining breast. I’m in targeted treatment anyway and if that is the case, why would my LCIS progress?
It’s been pouring rain and very overcast since, so I’ve been just giving into it and relaxing doing nothing. I hope everyone is doing the same in this weather. Today I have an MRI at 4:30 for my neck stenosis. Neurologist wants to get updated pictures before doing the pain management injection next week. The last one was 2 years ago..I’m going to take a Valium before going into that beast.😬. Have a calm day today my friends. I read about your struggles each day, even though I don’t always comment. I am also grateful to read about your good days. Love to you all in the Livingroom. See you later💗🥰
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Sondra, I’m sorry for all the NHS troubles, it’s truly disturbing but I do appreciate your honesty about it. Not being political here but NHS is often cited as a model by some pushing for national healthcare in the US. Nothing is perfect but what you’re describing is scary.
In other news, this heat sucks, might have to switch to iced coffee in the morning.
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Oh, my! So much going on! Dear sisters, I'm so sorry for the crap we're all going through on level or another.
I would have slept better last night had it not been for the cough. Funny (haha) how I slept between coughing episodes. Lots of loose stuff coming up. Went into the den at one point as I didn't want to bother DH and checked my O2 sat. It read 90, then moved around in the 90s. It's 96 this morning. Never felt SOB or anything.
I have a video visit with my MO next Monday to follow up after my two-week break from Ibrance. I'm down another half-pound this morning. That's down 7.2 from a month ago. Not a lot, maybe, but it seems like a lot for me. I was 118.1 this morning. I'm going to get some protein powder at Lazy Acres (my fingers wanted to type "Achers" LOL) this morning. That would be a funny name for a store - LAZY ACHERS, the store for lazy people who still ache despite doing nothing.
Love to you all. I hope today flies by, with all your problems solved. Fantasy Island? Sign me up, mel!
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mae, speaking of iced coffee, have you ever tried cold-brew concentrate poured over ice and sparkling water? I love it when I'm in the desert. I don't add sweetener, but you certainly could.
There is a decaf brand I like from Java House. I buy it on Amazon. The water is something like Soleil (in the blue can) and it really is refreshing.
Stay cool. It's still decent here in San Diego, thankfully.
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dodgersgirl, I'm glad you got the Vinny quote.
I feel like I keep adding doctors to my medical team and it seems like I'm somewhere between Columbo ("just one more thing") and Vinny ("Is there any more sh!t we can pile onto the outcome of this case?")
I'm still experimenting with food textures. Creamed spinach was wonderful, spinach souffle was hard to get down. The grits go down ok and Ensure is a good back up. I also got some Indian Kashmir Spinach (I've also seen it called Palak Paneer) which is good.
I had a rougher night last night with coughing. Lots of loose stuff. In between the coughing, I slept well LOL.
Thank you for the prayers.
Mara, my local grocery store had the hashbrown patties yesterday. I didn’t buy them, but they looked good and I thought of you. At this point, I’m eating whatever will go down easily.
Mae, I’ll join you at the river. I’m so sorry your mouth is no being kind to you!
Candy, I hear you! I watch these home shows and wonder at the energy of these “kids.” I’m sorry your dealing with nausea on top of everything else. (See my above movie quotes.)
Irish, no words… Just want to say, I’m sorry…
Sondra, WTF???
Hi to Shana and everyone else. My apologies if I’m repeating myself. I started a Word document to type my responses and suddenly I’m back where I started on the BCO site.
Anyway, I hope everyone has a decent day.
Carol
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Wow…I have not been getting the email notifications of your posts and I have missed 111 posts! Impossible to catch up with this busy thread, but I have read the last couple of pages.
Dodgersgirl, I have been on O2 for three months now and understand your house-bound comment. I just got a mini-concentrator (after lots of interaction with Medicare and the oxygen company) and it has helped although it only gives me a four-hour time without a charge. My DH rigged up an extra battery that has a cigarette lighter end and I can plug in there to stay charged when I am not at home or in the car. It gave me 11 hours yesterday while we were at the fair and I still had 100% charge so at least I know I can go somewhere if I want.
sondraf, I am so sorry to hear of your mix-up with the NHS. I keep telling people here in the US we don't want it.
Denny, I am praying for you while you are in the hospital. A UTI can be very serious. I was in the hospital a month ago with complications from one. I am sorry to hear of the complications with your port. I watch mine closely just for those issues. Thanks for the reminder!
Carol, continued prayers for you my friend.
Anyone I missed, I apologize. You are all special friends here.
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Hi everyone. Hope you are keeping as cool as possible. It is so brutal outside that just opening the doors takes your breath away. In your pocket for scans and support for all that is occurring.
@sondraf That is absolutely b.s. what has been handed to your DH. Their is a disease called NASH, and I have a SIL and a BFF's spouse with that disease. Private sounds like the right move. I'm so very sorry. Hope you can regroup and get on the right path.
@denny10 Omg what a horrible infection. I'd stay in the hospital, too. They can keep doing blood tests to make sure you are healing. Besides driving and stress would be such an added burden. Prayers for you to improve rapidly.
@micmel I'm sorry you are fighting mouth cankers. Not sure this is much help, but now that I got mine under control I eat yogurt twice daily. I used that magic mouthwash. I think thrush helps to set up the cankers also, so yogurt helps with that. Bless you for caring so much for your sisters here and in private. We are lucky to have you in our lives.
I can't recall the poster but wanted to comment on the low oxygen of 80's. That really concerns the qol question. I know you must be frustrated, angry. Wishing you new meds and aggressive therapy to increase your breathing and life.
Just go back from Pulmonologist office. Still can't see one, but I put my foot down not interested in sleep study test and wanted info on my scans and upcoming radiology appts. Gave me limited info but did order a base line breathing test to use going forward to measure the upcoming radiology tx.
I'm still in a significant MS exacerbation and going out into the heat really took it's toll. Good news the Humana case manager may have found me a neuro appt. in Sept. versus Jan. Today is my last day of prednisone. Will now have to depend on my body's own ability to heal.
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I am at a loss for words given what I’ve read here. The crazy health systems running amok and jeopardizing patients’ lives. I’m so sorry Irish and Sondra. I know in the US a lot of care is now provided by PAs or NPs, who can usually expedite seeing a physician. And all the problems so many here keep experiencing. I’m blessed that I’m just stumbling through this disease without any major issues. I want that for all of you, my sisters. I pray for all of you, especially that you can find some peace.
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@intolight — Medicare would not approve payment for a portable oxygen concentrator. I had to buy a machine outright so I could get to doctors appointments. Medicare does pay for my home unit. My portable concentrator has a spare battery and can plug into a cigarette lighter in the car. But, due to red devil chemo back in 2017, I have low ejection fracture so can’t “walk” very far even with supplemental oxygen. Today’s SpO2 numbers are still low with glimmers of readings in the 90s. Hoping tomorrow’s numbers continue to improve!
Definitely impacts QOL but still in a fighting mood so I continue Taxotere every 21 days.
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dodgersgirl, I am sorry you had to buy a mini-O2 machine yourself. It sounds similar to one I have. I also have the home machine provided by Medicare but I kept fighting them and finally got approved for a mini also. Medicare should have provided a mobile tank for you easily. I had to give those back when I got my mini. Doesn't make sense!
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I am at a loss for words also with the failures of the medical systems. I have long believed the US healthcare system is broken but it sounds like no matter which system you use the frustrations and incompetencies arise.
SondraF - I am furious for you. Though it's good news that DH may not have cancer I am appalled at how they treated him. I have seen a lot of bias surrounding drinking in the hospitals. In my unit even if a person was only socially a drinker we would often have orders to monitor for alcohol withdrawals and standing orders for benzos.
Denny10 - sepsis is a scary thing. I'm glad you are improving and that they caught that infection fast.
Mae - I love the water too. Always have. Stay cool in the heat. It's at or just above 100 degrees here and I've just been hiding out in the AC. I definitely vote for iced coffee. I make my own concentrate at home and make iced coffee with it. It's my summer thing. Glad to hear you got good news from the doctor.
Irishlove - Hugs. I am frustrated for you that you can't get in to see a pulmonologist. I'm glad that you got in earlier with a neurologist but holy cow, September still seems ridiculous. It's like that here too though so I guess it's just everywhere. Hoping the heat settles and you can continue to heal.
Dodgersgirl - Low 80s seems worrisome to me. I know that may be baseline especially with a low EF but I would still worry about those numbers. Do you have parameters to call your doctor with?
Cookie54 - Sounds like you have some fun planned this summer. I'm happy for you that your daughter is moving back close.
Sunshine99- glad to hear things are improving slowly.
Mel - as always hugs to you with those mouth sores. I wish I had anything helpful to add that might fix them but I don't. Just hoping that you get some relief soon.
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I am doing okay. I saw a pulmonologist yesterday who sent me home with a portable oxygen concentrator that I am to use whenever I am exerting myself at all. I apparently failed my 6 minute exertion test in the first 2 minutes. I am still trying to get used to the idea of carrying it with me and how fast all of this is progressing. I was alotted two weeks of Piqray while Novartis and my insurance are hashing out my financial situation and trying to get that copay to a reasonable level. The two weeks' dose should arrive Friday so I will at least be able to get going on the new drug. I have been out of Verzenio for a few days and was told not to refill it so I've been a little anxious waiting for the Piqray to get here. Other than that I am jumping through all the paperwork hoops trying to get on the short term disability through work. It feels like a full time job just getting everything set up now that I've had a progression. On a positive note, someone responded to my post about lymphangitic carcinomatosis and she has it too and has been living with it for 2 years. I was able to talk to her on the phone and for her to reach out to me and encourage me like that was amazing! It really gave me hope that once I get on the meds I can knock this back and hopefully get a little more time than the poor prognosis I was given. I think I live in a little bit of denial, I'm aware of it, but I still do it. Right now it's just too big to look at everything all at once so I just don't acknowledge that my day to day has changed dramatically. Some days I give in and have to slow down and sleep but most days I try to just keep on keeping on as usual as best I can. What else can I do, right?
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@emac877 — ref low SpO2 levels, would I contact GP? MO? pulmonologist? Or Cardiologist? I had scans recently and lungs looked good. Thinking it’s my chemo treatment impacting oxygen levels. Ref cardiologist, he found the CHF with EF issues AND I am throwing PVCs 20% of the time which causes SpO2 monitor to misread heart rates (shows HR like 29 instead of 80). And with SpO2 running so low, I honestly don’t know if I could get to the hospital. Any thoughts? I would really appreciate your thoughts
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Thanks for the kind wishes . I am feeling quite well so being stuck in hospital just for antibiotics is frustrating ,but they are so strong they have to be given intravenously :(
Mel, when I came into hospital I had bad moth ulcers . I was given oramorph, liquid morphine, 4 times a day to swill around my mouth and then spit it out. If you swallow, it can give you constipation. Plus Nystan ,an antibiotic/ anti fungal swilled and swallowed 4 time s a day. Half an hour before meals I had to spray Benzydamine Hydrochloride oral mucosal spray. Then Benzydamine Hydrochloride mouthwash after meals . I spent 3 days trying to remeber when and what to swill ,spit or swallow, but I could drink and eat without pain and the ulcers were diappearing fast , now my mouth has completely recovered . I can eat without pain. You have my sympathy as it is another pleasure in life that is being robbed from you. I hope you get relief soon.
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@dodgersgirl you may be right that the chemo is causing low oxygen, possibly due to low red cells (?). I think between that and the PVCs there could be room for error on your home pulse ox, especially if it is a finger probe kind and you have naturally cold hands or poor blood flow to your hands and feet. I think in your situation I would reach out to my MO first, or his/her nurse. The Pulmonologist would be my second choice in that list. Regarding the issue of getting to the hospital: is there anyone who could help you get in the car and get you there? Ambulance or 911 services might also be an option. Check and see what the docs say first, in some situations lower O2 sats are expected but sats much below 88 generally are a red flag. I was told by my MO not to hesitate to go to the ER if my sats dropped below 89 or I could not keep them above 91.
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@emac877 — THANKS! Yes, I forgot about low red blood counts. Nadir is the range of 7-14 days which is where I am now.
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