My Husband, My Life, My Love, My Family, My Cancer
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Santabarbarian thanks for the positive conversation starters.
Thanks for the hugs Mae!
Hugging 🤗 you all and looking for some peace and calm today.
Tanya
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if you have a moment, you should go and read the comments on her obit: https://www.norrisfuneral.com/obituaries/Cae-Adkin...
Beautiful, full of love. Hugs to you ladies.
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Mae, I feel the same way. My family and even my MO believe I could go for years. I just go day by day. I will take every day that I can still look after myself, my house and be physically active throughout. I know that I am terminal, am not even bothered by that. The only thing I want to be sure of is when it is my time for hospice and just be grateful for feeling as strong as I do. Other people will be surprised when the cancer decides to do something else. I see it as an eventual thing but feel blessed that I have had almost 5 years alive while being stage IV. I am also lucky since it was in my brain all along and that prognosis is worse. I have also been lucky that it did not spread anywhere yet from the neck down.
I always feel bad for the families and friends and us as well when we lose someone here. I take that sympathy and keep reminding myself no matter what happens, I have been very lucky to have had the time I have and reminded that not everyone gets the same luck that I have. That stops me from fearing or being depressed about my cancer in general. Everyday life has had its moments this past year that have been dark, but I have largely come out on the other side. That has been harder than my disease. This is my experience only, not expecting anyone else to share my opinion of my disease. I try to be careful of sounding like everyone should do or feel the same as I do. It is different for us all.
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Like I said in my post, I do not want people to boo hoo around me or act grief-filled when around me--like they have to tiptoe around me or have a hang dog expression when around me. I want to live, laugh, have fun. I want to continue doing things with my family and friends. I am not giving up. I am still me. I am still "Candy".
But if I can live through this---the scans, the appts, the meds, the unsure future and still be strong. Then my circle of people should be strong enough to just talk about it. They don't have to live it, just talk about it. I don't think that is too much to ask of them.
I do not bring up the terminal discussion all the time. I don't revel in it. But when things come up---like Mike's wife and Muddling's passings--- I feel like I cannot talk about it because it is uncomfortable for my circle of friends/family. I have to pretend I am healthy. That this stuff isn't happening to others with the same diagnosis as me.
I just want to say--- "Buck up, buttercup. I am the one with cancer, not you." And ---- "I need you to be strong for me."
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Candy, I think you should be able to say both of those last two statements. The same way we have to muster our supports to deal with our issues and fears, caregivers, family and friends need to muster their own supports to be supportive of us. That is the only way it works. There is no problem with saying that there are times where you would like to discuss your disease, issues etc just have someone just listen without trying to make you perk up. No one needs to be perky to function 24/7. The same can be said when people tell us to think positive. Sometimes we can't and we need to be realistic. That is not a negative, that is simply life. I blame society at large for teaching us that thinking positive will help in difficult circumstances, and that is not always so. Realism or pragmatism is just as beneficial and makes coping with things so much easier.
I talk about medical issues with my SIL more than DB. I go to him if I have financial or household repair type issues. I do not talk about my cancer with niece and nephews unless they ask.
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Mara- YES. Yes... we have to "muster", so they (family and friends) should "muster" too. Yes...there are times when I need to discuss things without the person trying to make me perk up. Yes... sometimes I need to be realistic about things. I am tired of putting on a smiling face to protect the other person's feelings. The other person/people needs to grow up and face the hard situations of life. Sometimes life/death can be tough, not happiness and light.
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Sondra~ way to kick some major crutches ass. I know you’re tired after but that is impressive. We all know they are. I picnic. I hope soon you’ll be feeling better to where it will be a 7 minute walk again.....
Tanya~ nothing wrong with having things planned, I think when it comes down to it, it makes it easier on the family. Which is so important. When we mentioned Mike, he goes by husband11 I believe and he was helping
His wife and taking care of her and he was a trooper for her. Reading his notice of her passing was deeply gut wrenching and it wasn’t easy to read,knowing we may follow the same road someday. He has been around a while, and he won’t be coming around anymore. He needed to move on, he said. So sad... Great families and great support what we all need, If we don’t have that we make our own families and support. It’s amazing what someone can do when you don’t have a choice. If you put everything down for them, it kinda prevents Them from having to choose for you. I wouldn’t want my kids struggling with anything.
Santa~I have always from the beginning never beated around any bush about my cancer. They were old enough to understand and old enough to be helpful. They live in denial. Even though I speak freely of it, no one wants to pull up a chair to discuss my constipation that day. Or my pain in hopping around areas daily. They want to talk about things that are important to them, so I let them. They’ll remember our talks, not my csncer. I try to keep it up beat, but somedays they know I’ve been crying. They just keep on going. My DD especially has come a long long way from last year. My son has some catching up to do.
I have many others to address but I’m nodding off. I’ll see you all in the mornig. Good night ladies. Much love ~M~
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So I went to a Palliative Care group associated with my onc’s office. They were very supportive, and I liked the ladies a lot. But they referred me to a doctor who specializes in CBD oils and cannibis products. I was hoping they would have these things on hand. I told them no opioids...I will not take them again unless I have no other options. So off to yet another doctor. Will let you know what he gives me and whether or not it works.
Whew....having MBC is a full time job!
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Today’s thoughts on my 3 year cancerversary
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oh Mae!!!! I adore you.... I feel those things also. Some of the losses also. You're so loved and cared for, may you have many many many more years to reflect on how well you have done. Both physically and mentally. You're a rock star! I think you're an example of what I'd like to be more of. Your attitude is so contagious. Love to you my friend...
BooBoo!! Yay~Youll find medical marijuana really does work once you find your Rhythm. Talk to the budtenders....explain the help you need. They are helpful to me. Palliative care is a good thing to have. I've had my Group-since inception of this cancer. (#*cking cancer) they are usually very good. Cbd does help. love to all.
waving to Tanya, Simone, candy, Mara, Minnie, Sondra, Moomala, Rosie, Philly, chiris, Missouri,santaHave a great Saturday!
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hello... I hope it’s okay for me to post here... please forgive me if it’s not... my husband has stage 4 stomach cancer that has spread to his brain and liver. He looks “normal,” but since I’m the one who takes him for his scans and monthly treatments, I know what his situation really is. Last night we had a friend over for dinner... this friend said to my husband “so, do you still have cancer? you look fine.” My husband didn’t know what to say and I was stupidly so shocked that I didn’t say a word... now I’m so mad at myself that I didn’t say anything.
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april, this thread is open to all to contribute, including you. We don't just talk about ourselves but also what goes on in our families. Welcome, this is a very caring thread and very active as well.
As far as your husband goes, I am sorry to hear about his cancer spread. That is certainly hard to deal with for sure. I also empathize with your shock when the friend said oh, you don't look like you have cancer. Don't be mad at yourself that you did not say anything. We always know what we could have said after the fact. Hindsight is 20/20 after all. Do NOT beat yourself up about it. Although I don't think the friend was deliberately trying to be ignorant and insensitive, it does not hurt less and I am sorry you both heard that.
In my case, when I am told I do not look sick, I usually don't bother commenting if it is someone not intimately involved in my life. It is too much bother. If it is someone I know, I would gently explain that I am very sick and in treatment for the rest of my life and leave it at that. You can choose to explain the situation so they know or keep it to yourself and just say thank you. That is your choice. Just make sure you do not beat yourself up for not saying anything. Best of luck to you and your husband and come back and visit us anytime if you need support. As I said, this is a very caring group of people, very much a family.
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April, of course you can post here honey. I am so sorry that you felt that awkwardness with your friend. We've all had it happen. It blows your mind the things people Will say to you. Just calmly say yes , he will have cancer forever. And the hammer will have dropped on the friends knuckles and that should end the conversation. There is no blue print to go through this nightmare of cancer. Just hold your precious DH's hand and reassure him of your love. That's what makes me get up everyday with my stage four breast cancer. If you hit the subject hard a few times and make them realize, it's better to simply say “ How are you?" Or “ can I mow the lawn for you?" I'm very sorry for you and your DH. I know how it feels and so does my DH. It's like walking on eggshells sometimes. You feel like you must make everyone else feel better, instead of focusing on the person themselves and how those types of questions sting Them so much. You're a wonderful caretaker. Thank you for all you do, because I know what my DH does. And it's ALOT!!!!!! I'll be sending my thoughts your way.
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mara and micmel, you just brought tears to my eyes ... in a good way... thank you... I’m not very good with words and i don’t post a lot but sometimes it’s healthy to reach out... im sending you hugs. I still wish I’d have said something to the guy... he wasn’t being mean but it just was so out of the blue and odd as if he was questioning if my husband even has cancer... that stopped me in my tracks and i woke up this morning thinking that I should email or text him my husband’s pathology reports but then I realized that he’s not even thinking about this. anyway thank you for being so kind and caring to respond to my post.
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April,
We are all here to support you, so please feel free to post as often as you want. We call this place Mel’s “Living Room”, and we all stop in for a good (really good) cup of coffee, and chat about what’s going on. Many days there are good things to share, like when someone has a good scan. Many days we just plain breakdown, or cry together over the loss of one of our own. But I am a big supporter in anyone who needs cancer support, and I don’t think you’ll find a kinder, more loving group of women than you will in Mel’s Living Room. There have been numerous times that I was not sure I wanted to keep going, but thanks to these incredible women, I know that my time is not here yet. Thank you, Mel, for that gift.
Hope you come back often for support. We will be here...
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love you BooBoo! So sweet. And yes we will be here... this is my second home ....
went to the movies tonight saw “doctor sleep” it was very good, the next installment of the Shining from Steven King, whom I love his books. It was really good. Even DH has to say he liked, since I’m the Steven king fan. I went out again. Can you believe it.... ???
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Dear son of Muddling:
Thank you for coming here to share with us about your dear mother's passing. I know her from another thread, and she had shared with us recently her move to hospice care.
Sending much love to you and all the loved ones who are so deeply feeling this loss.
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Good Morning dear ones! I have a bit of catching up to do. It's been a quite busy few days with family. DH and I are planning an afternoon in front of the tube watching the Buffalo game, and then we'll look around for movies. I have started watching Catherine The Great on HBO but truth I can't get past Helen Mirren playing Catherine. It just doesn't fit historically and that makes me mad. Then I noticed that Helen Mirren produced the show and so I guess that's where that happened! Not a ton of tv watching happening this weekend with all the family stufff we've had going on so was are looking forward to catching up on Watchmen, Shameless, etc etc.
I'm trying to work up some get-up-and-go to get some grocery shopping done this morning but my hip has other plans today. I'm still going to do the shopping but yikes. I'm into week four now of A/A and it's going well. I have a VORACIOUS appetite this last few weeks. The sheer volume of food I've been eating has been increasing and a craving for sugar has been evident as well. And insomnia. omg. I haaaaaaate insomnia. But I'm not tremendously fatigued during the day either. This drug is weird and I suppose I'm still adjusting. Totally doable and not much different than Ibrance. I do not have scans until end the end of January so I'm just trying to keep things relaxed and keep life moving while praying that this drug is working for me.
DH has been pre-occupied with his busy season and I haven't seen a lot of him. When I do, he's sleepy or in a bit of a funk. We talk about it and he's ok - this is just a super busy push for the next little bit until the holiday season is over. I have the entire week of Thanksgiving off. I have had thoughts of getting into my car and driving somewhere just for something different to do but honestly this is a little daunting to plan when I never know what my back and hip are going to be planning for any particular day. DH and I have two weeks off together at Christmas so we will make some nice plans then.
Still no MRI results. Second MRI tomorrow and I think I am going to ask for an MRI of my hip too. The doctors can't seem to decide between themselves where the pain is coming from. Hip or Back. It's really really frustrating. Honestly my spine feels a little better this week but my hip has been gross. You just never know.
Sunny and brrrrrrr cold in Western NY today. Big love. I'll catch up later on.
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Moomala,
I feel exactly the same about Helen Mirren playing Catherine. I’ll bet we’re not alone. They should have picked someone younger. I also just started watching Succession...it’s pretty good somfar
Also, what drug are you taking now? Sorry if you already posted that...my memory is shot! Are you taking PIQRAY?
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Happy Sunday, Mel. Love you too
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April,
Was wondering if you have any local support? You can ask your husband’s oncologist office to see if they have family support groups that they can refer you to. I think being the caregiver is often harder than the person with cancer. It is a tough road you are walking, so please let us know if you need anything. Feel free to express your fears, frustrations, etc., here with us. We get it.
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Mae thanks for sharing your anniversary of Cancer thoughts. Powerful.
Micmel I see you got out again. Happy for you.
April welcome and I hope you find all the support you need. I think we all had inconsiderate remarks from people and depending on who they are is what determines our response.
Moomala sounds like you’re making the best of everything. Enjoy. What do you have for hip/back pain?
Mara how’s your dryer doing. You got it just in time to avoid going out I. The cold for that chore.
Booboo you’re right out thread can motivate you and make you feel like you’re not in this alone. Even if I take some time off I still know you guys are here.
Tany
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Good morning all.
So yesterday, DH and a friend began repairing a portion of wood fence in the backyard that fell down during a storm a couple weeks ago and while digging new post holes, they hit the main gas line! Fire dept arrived quickly and we all waited out front in the street since gas was whooshing out. A gas co. guy finally arrived, then 2 more, then another 2 and they patched the leak within a few hours. No, DH did not call before digging, this will be an expensive lesson. We had pizza in the driveway for ourselves and the crews. Today I wait for someone to come turn our gas back on and tomorrow I wait for the cable co to repair the tv and internet lines cut by the gas crew, oops. Not at all how I planned to spend my weekend but grateful my neighbors aren’t smokers or hosting a bbq 😬
I hope you’re all well.
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Mae~wow. Thank goodness you or no one was hurt. That sounds pretty scary, gas whooshing out of anywhere. I’d be like running half ass down the street. The fumes alone, can over come you. Luckily , you guys got the gas co there fast. Geeze. Someone could have been seriously hurt. So glad you’re not. Are you saying all this will come at your expense? 🤨 I sure hope not. I guess that’s why they post the signs call before digging. Scary shit right there.
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BooBoo I am SO glad someone else is watching Succession. That is one of my fave all-time shows. I miss it and can't wait for Season Three. I am on Week Four of Aromasin/Afinitor. It's going well and I don't have scans until the end of January so I'm just takin' my pills and waitin' to see if they're workin'. I've been following how you are doing on Piqray. My friend here is on that for the last few weeks too, and is not having a wonderful time with GI stuff. Seems like some people get that SE and others don't so much. We don't have too many people on Piqray around here. My MO says she's only got three patients on it at the moment.
Glad we agree on Helen Mirren. Usually a favorite actress for me. I didn't want to sound age-ist I'm not much younger than she is.
OMG Mae how scary!!!!!!!!!!!!!! Yikes.
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Moomala~Glad you're not having those side effects.... GI.... effects everything. Someone mentioned having a heck of an appetite on the medicine and I don't need that. My risperione puts on weight and the pill is like a baby aspirin size.. I'll be trying succession after I finish Nurse Jackie. Us and our shows. Lol.
April~ thinking of you!
BooBoo~ Hugs my sweet friend
Tanya~ I know right ? Me doing stuff wow! Makes me feel better. Was a great movie. I loved it. Best part. With my DH. (Dreamy look inserted here). Hope your weekend has been good!
Mara ~ Hello friend.Candy ~ Hi sweetheart!!
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Shout out to intolight, saw she posted for our sweet Muddling. 👼. Always a pleasure to see you here. Simone~ Hope you’re well!
haven’t seen Rabbit in a while either.Gum doctor~You alright honey? Oh Parry sweet Parry!? 💔💔
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Hi all.
Hi Mel- read your Hi to me.
Today just kind of a quiet Sunday. Church this morning. The secretary I have been filling in for at church is in Rehab after her surgery. They gave an update and unsure if she is going home this week or into a Nursing Home for more Rehab. So I am still unsure if my volunteer church secretary thing is temporary or going to be permanent. Monday - Friday 9a-noon gig. We shall see. I like it, but kind of tiring to get up each morning and have to get around to be at church by 9a. Today when I came home from church, sat down to read and surprise, surprise fell asleep. Short nap before phone rang and then back up. One of those cloudy, cold days today -- temps in the upper 30's.
Mae- WOW. That could have been devastating. Hope DH won't be responsible for the gas line and other lines since he dug without checking first. Eek.
Moomala- Glad you are doing well with A/A. Hope you get some answers for the pain, and some relief from the pain.
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Alright, popping in post weekend. Not much happening really, I started walking lengths of the backyard like it was a pool, just to get things moving. My left back and hip are now giving me problems - whoopee! Its good to move but it also makes me really tired. Lord knows what that planning CT is gonna show, but I hope they can do something about this. From next Thursday its gonna be All Hospital All the Time - rads x5 (but not on the weekend), then one of those days I get goserelin from the chemo ladies and then MO on the Thursday after. As a major teaching/research hospital, the student techs have the cutest sweatshirts that are apparently available in the gift shop. I may have to make a pit stop and also pick up a tea towel for my mom. I also still haven't seen the hospital museum or the associated church - I'm not religious but they have sung services for the holiday period and if I happen to be around, may as well stop by!
Still waiting for news on the house, we put in an amended bid and are probably being held pending if another bid comes up. Its really dumb but it is what it is. Maybe something will work out for me yet in this sh*t year.
Entertaining myself with a book of easy crosswords and trying to get through the Ken Burns 'Country Music' documentary. Finished AHS1984 and I do have Succession downloaded but keep forgetting about it, so thanks for the reminder!
Mae - that gas situation sounds awful - AND they cut the internet/cable line!?!?
Moomala and Boo- Mirren lives in my neighborhood in a very recognizable (and scarily accessible) house, though I have never seen her around despite spending plenty of time at the pub next door. A friend's husband works as an engineer on the boat putting in new sewer pipes in the Thames - he had a story about her coming out and yelling at them across the water to cut it out with the drilling as it was interrupting her sleep. They just shrugged and kept on going cause, well, we all need some new sewer pipes!
Mic, Tanya, Mara, Philly, and the new folks - hope everyone had a good weekend in the quiet before the holiday storm!
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Sondra,
Wow. That is so cool. I’m like Moomala....really like her as an actress, but not in this particular role. I really hope you start to feel better soon. Pain is so hard to live with, so hoping the radiation works. Take care
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