My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Uh! Mara!!! I’m so sorry that happened. I hope it’s fixed quickly for you. Sending hugs
0 -
Here for pocket duty for scans and radiation. 🙏🏻🙏🏻 for best outcomes.
Irishlove - sounds like you have a great healthcare team in place.Happy Spring 🌷🪻🌸🌼. Mother Nature apparently forgot. Back in the low 30s this week, colder at nite.
0 -
Morning ladies, In everyone's pockets for good results from all scans and positive thought for Rads too.
emac So glad to hear you are managing better with the catheters.
Yes happy spring ,chilly here today also goldens but beautiful sunshine. Hi to all here and wishing all a peaceful day.
0 -
Well, today is finding me with a visit from people the PM sent re the leak, my linen closet is dry and am doing laundry currently, need to rehome dry detergent for now. It is dry but I dried up the mess last night. They think it is from upstairs neighbour laundry. I also asked for my linencloset to be sealed off as there is a large gap in the corner where a previous leak of detergent happened. We will see what happens, do laundry and unplug at night to be safe, store dry items elsewhere. I've been preferring liquids lately.
Another annoyance is that even though my garbage was in a smaller can, it was not collected. Brought the can back and put bag in the bin out back. When it warms up, will go out to reclaim my old can. Did not get upset, just disappointed.
Not sure what I want to make yet, probably meat pie with lentils for fiber as well. See what happens.
In pockets for scans, pain relief, new MO and anything needed and hope everyone has a good day.
This darn song was in my head all night, The other version was already catchy.
1 -
Poor, little potato, mara. I'm glad you took pity on it and brought it in.
Had a weird dream last night that I was in a huge Asian open-air market. They had roasted cauliflower that were about 3 feet across. All I wanted was coconut milk and dog food. I don't have a dog. Woke up mad at DH for abandoning me in the market.
I'm over it now and made DH his coffee this morning. 😁
Happy Tuesday. Off to get my MRI this morning.
2 -
Sunshine~ hope your MRI goes quickly. Sending good thoughts and hugs to everyone. Pulling for good scans for all.
0 -
Good morning ladies. Your posts brought smiles to my face being hugged in this wonderful community.
Prayers and hugs for all those entering scans and then waiting for results.
Mara, so sorry for yet another hurdle and that you have to handle leaks and garbage. Seems an image of our lives right now—leaks and garbage!
Irish, praying for you and your ongoing battles. Know you are loved here and we all want to wish away your pain.
Emac, so glad your are getting some relief from your drains. Praying they do their job.
I am packing today for my little trip. Sad that our big adventures of today would have been such a small effort in the past. But I am looking forward to being with family no matter how much effort it takes.
1 -
Sunshine, what an interesting dream. I have had dreams where my DB abandons me on a trip and does not come back. Weird for sure.
Intolight, I am thinking I put my garbage further away from where the building puts theirs so that perhaps the people collecting thought it did not belong, still going to reclaim my own garbage container when it is warmer next week, that way I can toss both bags hanging out in the bin out back. Lucky for the bin that my garbage never stinks so no bugs or anything would go after it.
0 -
Irishlove - I've had radiation a few times. It has varied in how many depending on the area. I typically had to go every day except weekends for several weeks. I think my longest stretch since MBC was on my hip and I think that was about 6 weeks if I remember right. It can get exhausting but it has been effective for me. I didn't have any issues with skin burns or any of that but I did buy some Aquaphor that I kept on the area at my RO's suggestion.
Mara - Love the video! Jack Black is great. Of course he did a cover of a Brittney song. LOL. Sorry about the leak. I hope they can get that fixed quickly.
1 -
@sunshine99 that is a hilarious dream, even better that you yelled at hubs for no good reason lol.
I love the amigurumi objects everyone! I was rummaging earlier today and found the magic circle/round work I had done in my intro to crochet class last spring and remembered how much I liked doing magic circles (once you got those 16 whatevers looped on). I dug out my normal crochet hooks too, so lets see what I get up to, though I need to remember the stiches first (to YouTube!). Such a pain when you have to translate from UK/US terms.
Best of luck on those results Mel and Sunshine and anyone else scanning.
@Irishlove - do you get a lot of sinus headaches with that level of change in atmospheric pressure? I seem to recall you are down in the deep Southeast somewhere, Ive spent time in that area and some of the storms were pretty spectacular because of how unstable the weather could be.
Re: weather - here it was dark and grey all day today, which made it feel far more like November than mid March. I was waiting for DHL to come with my new heated blanket and poked my head out the door about 430 and drivers had lights on, which is not real normal this time of year. It was a real blah day all around.
Have a great day all!
1 -
I am assuming it was fixed, we will see if it was actually fixed. I hope so.
0 -
Good almost midnight, everyone. Did the CT mapping, they'll call in 5 business days to set up appt. Looks like 10 days total. We said set them up for 1 or 2 and we can eat in the hospital cafeteria aka "Mr. Floyd's Place". Today was Taco Tuesday. Thursday is when they do the meditteranean (sp?) dish. It's outstanding. DH had his appt. with cardiologist. No restrictions and Dr.nfeels he is fine. Dr. mentioned that radiologists have no business reading and interpreting heart related issues. You know, we both agree with him. DH's next echo is Sept. This is important since we know sooner or later he will have to start chemo for Non-Hodgkin's Lymphoma. A healthy heart sure helps.
Just got my referral for gastro to help with colitis. And pallative care team, too. Waiting on opthalmologist and lymphadema therapist. Moving right along and finally feel like I am receiving good care. @sondraf I do get a lot of sinus infections here on the coast of central Florida. The pollen is so thick that our black car looks green.
In makes me angry when Dr.'s blow you off. It's like a power trip or something. I think they sometimes forget we are the ones suffering and knowledge and compassion are what we need. Not smart alecky comments. I'm sorry to all that have had that experience, been there myself.
In pockets for scans and treatments and a return to warmer days.
0 -
Rant coming….
Yesterday on the news they reported an ESPN (sports network) sportscaster, Hannah Storm, was diagnosed with breast cancer. They showed an interview with her about it. This interview was on multiple news stations.
She was diagnosed with DCIS (ductal carcinoma in situ), the lowest stage of breast cancer. She reported that they did a lumpectomy and she will be on Tamoxifen for 3 years. She was saying that she was SHOCKED that she was diagnosed with cancer.
Now, I don't mean to imply that her story is not real, or that she was not shaken by being told she has breast cancer. Any time the word "cancer" is said by your doctor it is life shaking. And I don't want to hear of any woman diagnosed with this disease.
But here is my rant-
We have Stage 4 breast cancer. And even some of us on here have said "it is a chronic disease", "live your life", etc. My own family thinks I should chill out about my diagnosis. They don't want to hear me "whine" about the scanxiety, the side effects of the treatment, my fears of the future, etc. And my so-called-friends have told me that if I would get out and do things with them that would help my fatigue and nausea.
I don't get it.
Why do we "OH MY" an early-stage diagnosis case, but poo-poo a late-stage serious diagnosis???!!!! And that seems to be the general censes of the public, not just my family or friends. We rah-rah Pink October. But do not talk much about MBC.
It seems so backward.
I don't want people fawning over me like I am on death's door, but I would like validation that my diagnosis is serious, and that my fears are valid. I watched my sister die of MBC. This is serious.
3 -
Irish, glad to hear things are coming along in planning for the rads and that the food in the caf was really good. Glad your colitis referral came through and you feel like you are getting good care. In pocket for your your DH and you as you both move along. As far as smart aleck comments from medical personnel, I am 52 and no one gets to do that to me or blow me off at my age. I am firm and not yelling when I tell them to knock it off immediately.
Candy, I feel the same way you do about the OMG moment of early stage and how it is treated and how Stage IV is expected to shut up. My family was sort of the same nonchalance once I was living a long time after except my mother. Chris and Kelly do take my cancer seriously and the falls that have happened. I take my own and every one of our conditions seriously, even those who are stable.
Well, seems the complete digestive enzyme is working alongside the normal one I was taking. System is repaired and I can eat what I want. Last night order McDonalds, saw there was an all day breakfast so got the egg mcmuffin and a junior chicken, yummy. I do think my egg mcmuffins are better.
Irritated that my recycling was not taken, just some folded cardboard, oh well, put it out again with garbage, will be rescuing my official garbage can the building gave me when warmer and dump my garbage bags in on garbage day. Everytime my garbage is not picked, it goes in the back bin. Will make a larger label on white paper and tape to the lid with address and unit number in case it was not noticed. Not such a problem then. If I can rescue my can, use the wee can for storage since it is cleaned everytime it is brought in.
Breakfast is going to be a chicken meat pie with lentils and small amont of wheat bran, some caesar salad dressing and salt. It always grossed my DB out when I would put these things together but I really enjoy them. Later will find a pasta thing with eggs and cheese, probably put the premade eggs and pasta in a pan and bake shredded cheese on top.
Cats have eaten well, small bit of dry food and are now enjoying some wet food, half portion size of perfect portion food. Added small amount of water as well, both enjoyed. My cat Tigger is slower at eating the wet food and Ava is always trying to steal his wet food so he eats in the bathroom with the door shut. Dry food is opposite, he motors right through it. Small bits throughout day and they are happy.
Not sure what else I want to do today, laundry, quick sweep and that is about it, still working on the towels that cleaned up the leak that turned brown, I am unplugging the cord that powered everything at night, it does feel safer to avoid any other leak from there.
I hope everyone has a good day and in pockets as needed including my own to get back to the PT and OT exercises. Got behind with the digestive issues, those are gone for now so need to pull them back out.
1 -
I completely agree Candy. So much it brought a tear to my eye. I’m with you. No one wants to hear me either. I think they are sick of it god knows I am. Cancer sucks
3 -
candy, amen and AMEN! No, I don't want anyone to get cancer but the hoopla over some of these early diagnoses, sets me off.
mara, glad your tummy is settling down a bit.
Waving hi to everyone in the living room. I'm waiting to hear the results of my MRI yesterday. PET scan is on Friday.
2 -
Sunshine ~sending support for your pet scan. I’m waiting on results myself.
I saw my palliative care doctor today. She’s amazing. I told her what happened with the new MO I was set up with and explained what happened and how I felt. She told me that I should never feel that way and talked me down a little about the situation. I was pleased to hear she was in agreement to raising my depression medicine a little. Between January 4 2024, my mother dying, having Covid for weeks , February 19, my niece overdosed on drugs and dies at age 35, has all taken a. Toll on me and living without my mother is really effecting me greatly. She was very receptive to what I have been going through and was so kind. I’m glad I went to see her. Sometimes I just don’t like appointments, I don’t care who it’s with. It just makes me feel like a pupil stuck In the medical cog . I went and had my xgeva shot after her appointment so I’m done for a while until late April for appointments. I’ll take it.
I’m thinking of everyone. Waiting for results or just a smile to let you know I care. Hugs to you lovely ladies and friends.
2 -
Micmel-So glad you had a good appointment after having to deal with that last one. You have been through a lot recently and hopefully the medication boost will help.
1 -
Reading along and thinking of you all. Wishing the best for tests and scans.
candy-678: so true. Hoopla, pink ribbons, struggles and bravery ——- us? We have to be dead first before they say that stuff. What? You are still alive?! It'll be five years next September so doesn't that mean you are cured? No? But when do you stop treatment then? To quote a member here - "When they find a cure or I am dead"
It is right up there with "But you look so good"😵
Okay - I am glad I am not dead yet and I still feeling okay but PULEEZ
2 -
Mel, glad you found someone who cares and listened. You have been through a lot and deserve extra TLC. Praying for your results…
Sunshine, praying for your results also.
Candy et al, yes, people are not very sensitive about our struggles mainly because they are ignorant of our journey. Years ago when I was only three years post diagnosis my SIL said "You look so good you must be doing great and almost healed!" I responded, "how do you expect me to look?" It shut down all conversation for a minute. That was mean of me and I apologized. Now, eight years post diagnosis I still hear it, but I just smile and move on. When I see my extended family tomorrow I am curious how they will respond. Is it a compliment that I have been able to keep up, or are they expecting me to look like death?… Either way I expect I will be repeating my story again. Since there will be eleven of us living in the same house for four days I am hoping I can keep my physical effects private. I have already told my DB, who is in charge, that I need a close bathroom and a place I can put my oxygen concentrator away from the crowd for noise concerns. He understands because he went through all of this with my mom. I am sitting here thinking I probably should have asked my MO for something for my nerves. I don't want to break down in front of everyone!
Waiting for my DD to sleep a few hours before we hit the road… The weather should be good all the way.
2 -
Thinking of folks waiting for scan results: Sunshine, Mel, I think I might have missed someone?
Mel, what a great visit with your palliative care doc.
Irish, it's good to read that you're finally feeling like you're getting good care, about time! Hoping the radiation will be really helpful for you.
Intolight, hope you have a great time with family and yes, that you can get some private space if you need it.
Double Amen to Candy's rant! I had a friend say to me just recently, since I'm recovering from spinal surgery, "but once you're recovered, you're going to be all better!" No, I still have Stage 4 cancer, remember? The long, drawn-out kind of cancer that people forget about? It's exhausting to have to remind people why I'm exhausted, it makes me back away from folks.
1 -
Maybe we need to wear a T-shirt that reads "DON"T ASK. I AM NOT DEAD YET"
2 -
Or even don’t ask don’t tell. Don’t ask because you might not like my answer. And don’t tell. Because I don’t want to tell you because it pisses me off. Ahhhhhh! Candy hit the nail in the head for sure.
1 -
Hi friends, ups and downs today. I found out that my BFF will both be on the same connecting flight to California in June for a concert we are going to together and I saw news this morning that the lead singer of the band on my bucket list at that concert died yesterday of a sudden brain aneurysm. My BFF and I saw the band live many times in the mid 90’s when we lived together and went to shows every weekend but I’m so deeply saddened that he’s gone. I’m sad for his family and band mates of course but for myself too, he was delightful, happy and loved performing, it was such a joy to see.
People say “you could always get hit by a bus” or in this case an aneurysm. It’s weird, I kind of appreciate knowing my fate. Anyway, I’m just bummed out about it.
4 -
Good evening all. @illimae I am so sorry you lost one of your favorite people. Hoping that you and your BFF find some time together and still have a great time. Ok, about that rant, 100% agreed. I read the story and something that set me off was her Dr.'s comment guaranteeing that she'll be cured and nothing to worry about in the future. I call B.S. on that Dr. I was stage 0 and look at me now. @intolight Hope you really enjoy your visit with family. Safe travels and wonderful memories to come. @micmel Thinking of you and hoping the change in medication work better. In pocket for all scans and life's challenges.
Nothing happening, just watching tv. It should warm up tomorrow. Still not feeling like jumping in the pool. Enjoying my recliner, lol. Take care all and thank you for your support and comforting thoughts.
0 -
Candy - I completely agree. People DO NOT UNDERSTAND Stage IV! They have no clue that there are different kinds of breast cancer, that the same meds do not work for everybody, that we never know when our meds will stop working, that eventually we run out of treatment options... Personally, I don't like the "chronic condition" comparison. That's diabetes, asthma, RA, eczema, and so on - usually won't kill you if you keep managing it. The cancer WILL kill me eventually, no matter how well I "manage" it. Not the same shit. Unless, of course, I get hit by a bus. :-/
In pockets for people waiting on scan results.
Mel, glad to hear you had a good visit with palliative care.
2 -
Morning ladies, In your pocket for pending scans and results,sending positive vibes your way.
Ugh Candy a everyone else here I TOTALLY agree with all points made on this. It's beyond annoying and sometimes I ask myself,am I asking too much from people? Are they just unaware? Do they avoid the acknowledgement of my disease because they don't know what to say or do? But honestly I just don't get it! I have always been sympathetic to family and friends and inquired how they are doing etc. Oh don't even get me started on the celebrities and their cancer diagnosis! Their lives are not any more important than all of ours! Why is it such a big deal when they have cancer? We are out here living with this every single day and many times unacknowledged.I don't know is everyone just to busy living their own lives to empathise? I have endless questions and thoughts on this. Thanks to all of you my extended family for always being here!❤️
Irish Glad you are set up for Rads and are getting better care to address multiple issues.
Mel You have been through so much lately. it's just overwhelming at times. Glad you have a good palliative care doc who listens and cares.
intolight I hope you are able to have a nice time with your family and relax. You deserve a break from reality and a private space also. I hope you everyone is empathetic to your needs and you enjoy your stay together.
Mae Bummer on the sudden death of the lead singer. Sorry you won't get the total band experience but happy to hear you will enjoy it with your BFF.
mara Hope your feeling well enough today to continue your work with PT and OT. Digestive issues can certainly be rough!
We are possibly bringing our new Golden named Buster today( not sure if we're keeping the name)! We're going up to visit him at the rescue and discuss his vet visit and testing. If he is all ready to go we will bring him home, fingers crossed. Excited and nervous that it all works out. We need the joy of a dog back in our house.
Waving a big hello to all and a good day.
2 -
Candy - ditto to what everyone commented. No one gets it except those with it. So thankful for this group. Our local Junior Women’s Club does a Bosom Buddies walk every May. Big pink ribbon on all the posters and pink ribbons hung on all the downtown shops. I commented that they should include the MBC ribbon. No response. Will make the suggestion again.
Mel - so happy that your palliative appointment was a positive one. Lord knows we all need something positive in our lives.Mae - that bad news sure sucks. I think musicians are gifts from above bringing joy to all. We had our grandson’s 5th grade band concert last night. It was amazing to see these kids that have never played an instrument before September come together and play music. The band director was so proud. Us as well ☺️. Our grandson got put on a trombone but claims he wants to do drums next year.
Cookie - fingers crossed you get that golden! Our 3 are standing next to me with utter impatience. Hey mom, stop drinking that coffee and feed us😉😉😉
I’m supposed to have scans tomorrow but we now have a winter advisory for 5-8 inches of snow starting after midnight. I think I will see how long a wait I will have to reschedule. If it’s more than a month I guess I’ll bite the bullet and go.Sending good thoughts to all our sisters here HUGS
Edited to add that I was able to switch scans to Monday! Great customer service at central scheduling!
1 -
GoodMorning to all my lady friends and any gentlemen visiting the livingroom at Mel’s. I just want to say Hi and im really sorry I’ve been MIA and haven’t caught up on anyone’s struggles here. I’ve been dealing with a bad coughing virus and Bonchitis. I saw my GP yesterday and she said I’m still really congested and wheezy so she put me on 5 days of Prednisone to knock it out of me. So please know I’m in all your pockets and will check in again soon. I haven’t even been up to reading let alone posting anything up until now. God Bless you all.🩵🙏
1 -
Hope you feel better soon Shanagirl.
0
