My Husband, My Life, My Love, My Family, My Cancer
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Kittykat- I have to wear a bra. I had a mastectomy on the left and no reconstruction. So I have a prosthesis that fits in my bra. I do take days when I am at home alone and do not wear anything under my T-shirt. My cat doesn't care that I have 1 boob. He does stare though. He doesn't get it. One day I have 2 boobs, another day I am flat on one side. Hahaha. Humans are weird.
Tanya- Good idea. Short term plans of something easy and fun.
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Tany, Thank you for sharing that tip! I used to do that when I was in school as something to look forward to & a time to put away assignments and exam prep but I've stopped. I will start doing this again. & Good for you for taking the time to look after your mental health!
Kitty - I got a port inserted in Aug. It's made things so much easier. I do use Emla cream for an hour before it's accessed just because I'm over having things hurt when they don't have to. Once I forgot and just applied an ice pack for 15 min before and it was essentially the same. My port doesn't bother me now but for first few months I couldn't get comfortable sleeping on that side. I actually kind of like the way it looks too LOL.
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Tanya, glad to hear that the counseling session has helped and the tents and sundaes ideas sound like a lot of fun. Anything we can do to have fun as well is good. Enjoy that.
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my tree is also still up.... I dread taking it down. Going to take my time. DH said he would help. He’s so kind. Hope all is well. Didn’t do too much today. Slept a lot on and off
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Candy,
You asked a page back about my profile saying I had bone mets. So I'm confused. I always expected that the cancer in my bones would one day appear in the vital organs, and then that's what would take me inthe end. Am I wrong? Maybe I need to get more information from my MO. Or maybe I misunderstood your question. Can you help me out?
Yes, I love that hugging bears too, Tanya. Makes me feel very loved and supported. That's our Mel. Sweet, kind woman.
Mae, thanks for your encouragement too. And from all of the rest of you who commented on my recent PET results. You are all so awesome. I will forever be grateful to have found this thread.
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Sorry ladies, I should have clarified that I didn't have a mastectomy, I didn't mean to upset anyone.
Do anyone's children act like you are going to just live a normal life span, I love my daughter so much but if I try to mention that I won't be here to see Finn grow up into an adult she just tells me not to talk like that. I want to spend as much time with him as I can but now she's saying she wants to have him on the days he used to come and sleepover with me because she wants to spend more time with him on the weekends, am I being selfish, she will have him long after I'm gone. I have 6 other grandchildren but they live on the other side of the country and with our state borders being closed I haven't seen them for a year now so Finn is it for now until this pandemic is over apart from video calls with my other babies.
Sorry to put this on you guys, but I figured you all might get where I'm coming from.💜
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Kitty~my DS is clueless. He thinks he will always have me around. Their minds just won’t let them go there. Try explaining to her exactly how you explained it to us. Just be honest about wanting every chance you can get. Even compromise on something in between. So you don’t feel upset. I’m wrapping you in a hug.
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There has been so much traffic through this living room since in checked in last! Want to say hello to everyone. Life here goes on NOT as normal. I am ready to never wear a mask again. There was a hair clinging to the inside of mine and I managed to inhale that hair in the grocery store and had a coughing fit. What I wanted to do was rip my mask off and dig that hair out of my mouth but that's like taking a rifle out in public, someone would have probably clobbered me with a bag of dog food. Coughing alone had people looking at me like I was running through the store with a rabid dog on a leash. It wasn't even really coughing, it was choking, there was a hair in my throat! Whew. Bad day buying dinner, I tell you! Aside from that and being pissed off over my mamm that was due in October and still hasn't happened, life rolls along. Hugs and love to all.
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Booboo- I didn't mean to confuse you. I went back and reread your post and my post. You had asked about the wording of the report and if it meant that it has spread to your liver. Moth showed us the pics of that area of the liver. So, Yes, sounds like "concern for small underlying metastasis" in your liver now. You also have mentioned you have sarcoidosis (am I thinking right?) and that it is hard to differentiate between cancer and the sarcoidosis. But the PET report says "compatible with metastasis" when talking about the lungs. So I was interpreting the report as now mets to liver and lung. And that your profile says bone only. So... now progression to organs. Sorry if I confused you by my post and how I worded it.
Kittykat- You did not upset me. I was just saying that with a breast prosthesis I cannot go braless much of the time in order to prevent rubbing against my Port. So it is an unavoidable problem with the Port and troublesome.
I do not have children, but my sisters husband (my brother-in-law) says I will "live another 30 years". As Mel said, try talking with her as you explained it here. People are clueless. Either in denial or not understanding MBC.
runor- I needed that laugh. You have a way with telling stories !!!!
Sorry if my posts are sometimes taken wrong. That is the trouble with typing our messages versus in person with voices, inflection, and body language. I wish we really could come to Mel's Living Room and talk in person. You guys are closer to me than my family. You are my family.
Today is laundry day. Not much else. I thank God for my house and my cat, but it does get lonely.
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Candy,
No problem. I know this sounds crazy but I can’t get a straight answer out of my MO about how things progress (she just spits out the report wording) and what the end looks like. I guess it’s different for all of us? So I’m correct in saying the cancer has most likely jumped to the liver, right? I’m now wondering if others have had cancer in the same location of the liver and what happens next. Biopsy? Anyway, thanks Candy for clarifying. And yes, it is very difficult to tell sarcoidosis from cancer on a PET scan. So it may or may not have also moved to the lungs.
Tanya, such a good idea to decide to do something fun. We all need that. Ice cream sounds good. Or a good movie with popcorn or other preferred snacks would also work. Love you, sister!
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Booboo- I wish I could help you more. Just keep asking your MO. Keep questioning. I think that for each of us progression looks different. I used to ask my previous MO about my next line of treatment. I like a plan. She would just say we have lots of treatments to choose from. But then I realized that it depends on how progression looks at the time of progression. Will it be an explosion in my liver or a slow growth of the ones I have in the liver already. Will I be in crisis with my liver function. Will it progress to another organ that is not affected yet. Depending on how things look then will depend on my next treatment-- do we need to hit it hard and fast or have some time to have wiggle room. (I have not had progression yet, just small 1-3mm increases they do not know if true progression.)
Yes, I would say it has spread to your liver. Though it did say "small" and you have not had a biopsy yet to confirm. Can they biopsy that where it is? That is the next question.
I just noticed your profile says "bone/liver" in 2017. Did you change the wording? I thought it said "bone" before. I am getting confused now.
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Kittykat, I don’t have children but my parents aren’t acknowledging the seriousness of my situation. DH and I visited a couple years ago after brain mets were found (I was 42 at the time) and they were asking if there was anything particular I wanted of theirs after they die. I calmly told them that I’d likely die before them and was immediately confronted about my “negative attitude”. A normal lifespan is far different when you’re in your 40’s vs 60’s, I decided to let that comment go, there’s no point in trying to convince someone who is unwilling to see the reality in front of them.
I tried making eggs Benedict this morning but got the hollandaise wrong, oh well, next time. Nothing interesting today, just grocery shopping and more packing.
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Hello everyone.
I took some time away trying to manage real life. Spent a lot of time crafting (knitting and needle work on a quilt for my daughter-a 22 year old project), gardening (lots of tomatoes) and like many, mask making for many family members and friends. Sadly, I had progression for many tumors on my recent CT scan. Has anyone here gone from Ibrance/Faslodex to Affinitor/Aromasin? I am very deeply concerned since my last experience with an AI-Arimidex was intolerable (severe vertigo and multi-day untreatable headache). Thank you for any information.
Moving
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movingsoccermom- Sorry to hear of your progression. I cannot help you with your questions about Affinitor/Aromasin. I hope others will chime in. And I wish the best for you.
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Sorry Candy...I did go in and update my profile to add progression to the liver, but didn’t bother adding under a new date. Lazy here. So you are not seeing things!!!
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Hi, movingsoccermom, I'm sorry to hear that Ibrance, faslodex has stopped working for you, I was on Affinitor/Aromasin until just recently, if you can tolerate it, it works really well, I was on it for about 6 weeks and was feeling great, my tumor markers were dropping, which is a good indicator for me, but then unfortunately everything went wrong, I had trouble breathing when just walking to the bathroom and also a racing heartbeat and a very high temp, I had to get an ambulance to the ED. I got pneumonitis from the Affinitor and spent 9 days in the hospital. It's a great drug, just carefully monitor your breathing and temperature , its a rare side effect apparently, I guess I'm just one of the " lucky" ones. I hope that you'll be fine with it, it's strange what affects us, I'm fine with the Aromasin but the Affinitor knocked me for a loop.
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welcome back movingsoccerMom. Verygood to see you here. It's has been a while. I'm glad to see a familiar name again. Always a chair with your name on it. Sorry about the ibrance failing you and hope the next line will give you years of kicking back cancer! I know we all get nervous about medicine changes. I hate cancer so much. Sending good vibes.
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I am going to bed early hoping to get some good sleep my mind never shuts off. I worry about everything. All my relationships changing, because of cancer. As I approach the 5 year mark for having stage four. I can't think of anything that I've come away with that's beneficial to me at all except all of you. Everything else basically sucks out loud. No ones ever happy anymore. Why? Moms dying. I know that, moms been dying for five years now. She'll be fine. But daily I'm not fine. I have people around me. But i feel like I'm on eggshells. I feel tension all the time and wonder when the next blow up will be when I snap. And things have a way of coming out then. I'm
Sick of the sex innuendo bullshit. Ha ha. Television is full Of sexual innuendo. Not even commercials are without it. So it's like a banner waved in my face. Listen people. I want to say. My hormones are toast gone poof forever lost. Never ever coming back. I'm sorry. I didn't ask for it. It just happened. I didn't ask for hormonal cancer. I don't find the ha ha's funny. Like please just shut up. It's just another reminder of something I can't do or something I am lacking in yet again. It may be supposed to be lighthearted perhaps. But I know there is hidden meaning in there. He was supposed to be taking a “shower" for like two hours today hinting and dawdling all around trying to get me to come upstairs. My mouth is sore and killing me from the end of the round of chemo. I mean it really burns and hurts. I'm interested in stopping the pain. Not anything else. I feel bad in even feeling this way. But I do. I try so hard to just force it to smooth the waters. But sometimes I just don't feel good. And it fell on deaf ears. I don't want someone tapping their foot at me because a week has gone by and someone needs attention. Well for me it's been five years almost since I had attention. Try living in this hell of a body and get back to me
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moth: I am amused and pleased for you that you like the way your port looks. Sometimes I feel self conscious about it. I call it "Nigel" - actually Nigel is the name of the very tiny alien creature who lives in that little bump of a home on my chest.
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Mel,
Would you be willing to talk to a counselor through your palliative care group? I really think you could benefit from talking through some of this stuff. Which, by the way, is all legitimate. You are suffering my friend, and it breaks my heart. We all need to take advantage of the help available to us when needed. I just want to see you smile again. You have been through so much, and to talk with someone may just be the ticket for you.
Hugs from FL.
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Mel - praying for you. This all is really hard and I know it is hard on our DHs too. I think sometimes even though we are with them they feel alone. Cancer is a horrible disease.
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Mel - I feel your frustration. Then when I see those fricking ads on tv for our MBC drugs, I get so pissed off. Everyone beautiful, smiling, enjoying careers. How about some truth in advertising..... Don’t beat yourself up. May you be at peace today, my friend. HUGS.
Soccermom - sorry about your progression. That’s the fear we all live with and I’m hoping the new rx will kick your progression to the curb! We’re here for you when needed. HUGS.
In fact, HUGS to all my sisters in this room. We sure need them and don’t get enough
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Mel, I’m so sorry for you. I can’t even imagine the hell. I know there is nothing I can say to make you feel better, but I am wrapping my arms around you and giving you a gentle squeeze.
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Soccermom, I am very sorry to hear of your progressions, hugs to you friend.
Mel I am hugging you to and can empathize about the TV, Movies and commercials being suggestive. Hard to be subjected to on an ongoing basis if you are not feeling it. I am also feeling your overall pain in your life and wish I could take some of that for you. I do think that someone outside of the family to talk to would not be a bad idea who could simply listen as we do without judgment. We all have enough to deal with cancerwise but there is our life day to day, politics, covid etc that add on as well. Whatever you decide to do friend, know we are there. I wish there was something you could do to take you off to a better sleep. Some of your stress has to be related to the long term insomnia you have suffered. Not all, but some. Not sure if CBD gummies or something would help or if your doc would recommend. I used to find those helpful to relax and it did not make me high as there was no THC in it.
I am just going to the store today for a few groceries and some fresh air. Not sure if doing anything with DB today. My nephew had another cold, another negative covid which is good, sounds like they infect each other at work in a small work space. Other than that, watching tv for money, cooking shows, listening to Christmas music for cash and the odd survey. Pretty quiet around here. I did do something comical yesterday though. Should have known better, was mixing up my fabric softener concoction of actual fabric softener, vinegar and decided to put the baking soda in too. Let's just say I had the mentos moment as it all erupted and made a mess on my counter. I surprisingly was not frustrated about it, just went about cleaning it up. I have now changed my routine and will just dissolve the baking soda first pour it in washer, then put around 1/2 cup vinegar and a tiny bit of softener just for some smell. Smells fresh and clean.
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Mel- I am sorry you are struggling so. I am thankful I do not have a husband to have to deal with. Maybe lonely is not such a bad thing. Even though I have a dysfunctional family that drives me nuts. Just keep venting here. Maybe talk to Palliative Care and see if they have some advise. Love you and hug from here.
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Mel, just saying I hear you. And I'm leaving you alone because when I feel like (which is all the time now really) that I just want people to leave me alone. But also just be there. But quietly, with no expectations. So that's me. Quiet and with no expectations.
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GoldensRBest: I hate hate hate those ads too. "Gee, I might live 10 months longer so I think I'll open a wool shop or join a choir" All I can say is the "living in the moment" is an improvement over the "new normal" crap that was there before. But it still doesn't reflect the reality of time ticking away, or the SE's.
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Mel, I am so sorry. To say this all sucks does not even scratch the surface of the deep, deep suckage going on. Sex. Desire. Intimacy. What are those things? A girlfriend asked me if I missed sex and I said no, I do not miss sex. I miss wanting sex. If that makes any sense. I can live without sex and mostly am, except when The Other gets impatient and then we have sex that serves his needs because he's the only one of us who has needs. My sex drive is Thelma, my vagina is Louise, they got in a car and have gone full speed off the cliff. Roll end credits. I just want peace for you my darling Mel. Someone to bring you wine, rub your feet, tell you you're beautiful and also tell you jokes. And hug you just because you're worth hugging. Love. And as Moth said, feel however you need to feel as long as you need to feel it, no need to respond to me. Just be you, you're entitled.
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Micmel, just adding that I’m sorry too. Although, I have very little extra to deal with because it’s just us and no kids, I get it. This whole thing sucks but I hope you’re able to find joy in the good bits whenever you can and if you can’t yet, so be it.
Waving hello to everyone and just relaxing with movies today as it’s cold and rainy here.
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Hello ladies. ~Runor. Making an appearance I feel happy about that. Thank you for all your words and thoughts. I just want peace. I don't want to feel like I owe someone something because they help me or “take"care of me. I didn't ask for this to happen. He's not even. Making a big stink about it. Yet. But I feel It brewing. One thing could set it off, like my sons room. Then DH tells me how he feels (which are allowed to be felt , because some are very valid to him. ). Sometimes how he feels I have no answers for. I am left alone like a deer caught in the headlights. Wondering which way to run like the squirrel on the street begging for safety. I can't fix these things. I would if I could. I don't know how my hormones are going to be from now on. I went slamming into menopause no warnings given ,Whamo. That alone will change how you look at yourself and sex drive. Non existent. Maybe for some who didn't go through massive chemo and still takes a strong doseage of it most days. This is who I am now. I don't want battles. I don't want to feel like a stranger in my own home. I want to wake up and do whatever I am able. For that day. And no matter what that may be. It's ok. Someone said , you want them there. But not to really expect anything from you because you're spent cancer drains you of everything good. You're left an emotional wreckage sometimes. At some point during this hellacious walk we have to take. Physical scars, ptsd. Others that know youre sick. But you've been sick so Long that they are kinda used to it. But you aren't. Never. The only time I feel Happy is when I see my pillow coming at me knowing I have 8 hours of nothing. Alone with no one wanting anything from me.
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