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Anyone doing this MBC thing alone?

or just me?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,646

    How alone are we talking about?

  • Kikomoon
    Kikomoon Member Posts: 358

    Hi Finallyoverit. I am not alone…..but sometimes having MBC makes me feel very lonely. No one can truly know how we feel unless they have been there themselves. That is why I participate in these boards so much. I feel like everyone here understands what it is like and truly cares.

    The people on these boards have become more like "sisters" to me in just a fewmonths than my own two estranged sisters, just by listening and caring. Yes, I have one of those families.

    How are you doing?

  • gr4c1e
    gr4c1e Member Posts: 124

    I'm alone, but not entirely. I'm not married, no kids and I live alone. I'm lucky to have some great supportive friends in my corner, but at the same time, they really don't understand what I'm going through. AND, if one more well-wishing, armchair oncologyst recites one more MBC television commercial they saw to me, I might cut a bitch!

    I think part of my problem is that I've gotten really good at powering through, so most people don't REALLY know how physically and emotionally draining it is to be me right now. Fake it til you make it, right? But seriously, it's all I can do to NOT slap somebody. I think that's why I really like living alone. It's nice to get away from people. Especially the ones that are draining what little energy I do have.

  • sunnidays
    sunnidays Member Posts: 152

    I has an interesting experience the first time i was diagnosed that make me think, I would see older women come in with their adult children nearly letting their adult children question everything for them, and they seemed to be much more dependant than older women who came in by themselves.

    I think the difference is that maybe not being married and not having children made them much more resourceful and keep them younger in attitudes as they have always had to look after themselves without support.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Finallyoverit.

    I’m pretty much alone although I do have my 90 year old mother. She helps but has so many of her own problems that it’s more of a hindrance at times. No spouse, no kids so nobody to share the burden of house and garden (or dog - just up and I can hear the rain bucketing - ew!) and I’m on my own for all appointments, etc. I worry about it a bit. Not sure how I will manage when things get worse but one day at a time..

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,646

    I am not married but I do have two adult children who live nearby (one is about to move about 2 hours away). My younger dd accompanied me to many of my medical appointments. Although I valued her observations and questions, her presence did not make me less independent. She was a great second set of ears and sometimes thought of questions that hadn’t occurred to me. That was all long ago and unless something big is going on I go to all my appointments by myself. An interesting “observation “ sunnidays but your assumptions may not be true!

  • candy-678
    candy-678 Member Posts: 4,074

    I am alone too. Never married. No children. A dysfunctional family with a brother and sister, but they don't even ask about me much. And never go to appointments with me. I go to everything alone. I have a church friend I can ask if I need a ride i.e. when I had my liver biopsy. But CANNOT go alone then, so it was really needed. Though I was alone at my home after the biopsy, even though the instructions for after biopsy said I should have someone stay with me.

    I know unless someone is going thru it, they truly cannot understand. That is why I love you all here. But, it would be nice to have someone to emotionally support me. Someone to give me a hug or squeeze my hand on the way to the appointments. Someone that I could talk to about my fears. But, I do that here, so there is that.

    I do wonder and worry how it will go as I get sicker. I guess I will end up in a nursing home alone. I hate to give up my house and my cat.

    finallyoverit I do understand.

    This is hard.

  • katyblu
    katyblu Member Posts: 200

    I am not alone for the most part. I’m married but my husband works Monday thru Thursday 2 hours away so he stays there. He’s only home Thursday night to early Monday morning. We’re both military and don’t live close to any family. No kids or pets. So it can be very lonely at times. I go to most appointments by myself but my husband accompanies me to the big ones. It’s always helpful to have another set of ears.

    But these forums have been so helpful. The ladies I’ve “met” here have provided so much support. They all understand and everyone helps everyone out. We’re her for you

  • sadiesservant
    sadiesservant Member Posts: 1,875

    My mom came to the first appointment with my oncologist 20 years ago. It was a disaster. I was more focused on her and her reactions that I don’t think we had a pair of ears between us! Never again. I took a friend to the first appointment after the MBC diagnosis but everything else before and since has been a solo flight. Easier…

  • finallyoverit
    finallyoverit Member Posts: 133

    Thanks for the replies, ladies. I appreciate it. I read through the bucket list thread the other day and it really made me come face-to-face with some very hard realities.. some that have been mentioned in this thread.

    This is hard.. and super hard when you are doing it solo. Right now I’m fine, but what happens when things start to go south? I don’t have anyone around to help. I will likely end up in some sort of assisted living or nursing home. How depressing. I have 1 sibling, who knows of my mbc diagnosis, but hasn’t bothered to even ask how I’m doing in a few years. My parents are elderly and have their own medical issues, so that’s not an option either.

    I’m scared to death that I’ll be forced out of the workforce and without my one and only income, I won’t be able to support myself.

    The bucket list thread also made me start to think about what is on my list.. and how I’ll likely be doing them alone. Things like seeing the northern lights and seeing a show on Broadway, I’ll be doing solo. Just a kick in the gut, that’s all.

    Thanks, as always, for listening

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,646

    finallyoverit,

    Life is a funny thing. We sometimes end up in situations or circumstances we never imagined we'd be in. I was married for over 20 years and never imagined that my marriage would turn out to be so awful. But it was and dueto my stubborn notion of commitment I stayed far too long. Starting life alone wasn't easy but I managed and now, 14 years later, I'm good! I do some things alone, like a recent solo trip to the Santa Barbara area, some things with friends, some with family. Funny that you mentioned Broadway and the northern lights. I was born and raised in NYC and introduced to Broadway at an early age. I have lived in the San Francisco Bay Area for over 30 years but still love the theater and enjoy the touring companies that come through here. My great fantasy is to fly to Norway and take a Hurtigruten cruise to see the Northern Lights. Care to join me😊?

    I do have two adult daughters and three grandchildren as well as fabulous son-in-laws. They live close by, though older dd just moved almost two hours away (They moved to Napa so I will be an eager visitor!). They have all been wonderful when I needed them but they have their own lives and young families so I am not dependent on them. When my bc progresses, I may need them more but I have very mixed feelings about putting them into the role of caregivers, though they would be the first ones to insist on helping me.

    As far as income, this is a good time to shore up any pensions or retirement accounts you may have. I am not sure what country you live in and what support is available but look into it while you're well enough to do so. I retired in June of this year. Not working is weird but I'm finding my way. I was a teacher and will start subbing next month. I figured I might as well pick up some extra income while I can and I miss the kids.

    Life is quite a trip and it brings us to some very unexpected places. Take care.

  • candy-678
    candy-678 Member Posts: 4,074

    Finallyoverit- Just a mention to the work/financial issue. I stopped work in 2019 at the age of 49 due to the MBC. Could not handle the job anymore. I get SSD (Social Security Disability). Since it is just me, and I have always been frugal--a real cheapskate, lol-- I can make it on that income. Everyone's finances are different and circumstances different, but just wanted to let you know that. I guess that is the silver lining being alone, just 1 to have to feed and pay bills for.

    I am sorry your sibling is not involved. Family sucks sometimes.

    We are here for you.

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29

    I like your lingo. I’m a curser and will be praying and cursing thru this entire thing. Xxx

  • illimae
    illimae Member Posts: 5,519

    Finallyoverit, I’ve done a couple of bucketlist items alone since pre-covid my husband worked away from home most of the year. I flew to Chicago and met up with my BFF for a music festival and another time I flew to San Diego for another concert. I found I enjoy travel alone too, it’s actually less work when I don’t have to make sure DH packed and stays on schedule. Having the hotel room to myself and just wandering around was a pleasure. Perhaps going with a friend or on a group trip somewhere would work.

    Also, like Candy said, you may want to check into Medicare, if it’s an option. I medically retired at 43 and it’s been pretty good. I miss working and my friends there but the new freedom and reduced stress has been really great.

  • Jojo71
    Jojo71 Member Posts: 15

    I'm sort of alone. I have a teenage daughter but I don't talk to her about it because I don't want to put that burden on her. My parents are in their eighties so they can't help much. My siblings are so busy with their own lives I don't feel like I can rely on them. So I feel pretty alone.

  • candy-678
    candy-678 Member Posts: 4,074

    Something that was brought up in another Thread is clinical trials. I have never been involved in a trial, but I chose my cancer center because they offer them. I live in a rural area and the oncologist in my town does not have access to trials. My center is a 2 hour drive (one way). If I would want to do a trial someday, would I be able to do it due to being alone. No support system for the multiple appointments required. My MO wants me to have a liver procedure (Y90) now. But I worry about doing an invasive procedure and being alone after. Will my aloneness (is that a word?) limit my options in treating my cancer???

    Do you guys think about those things being alone???

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Hi Candy,

    I definitely think about these things but here, clinical trials seem to be pretty hard to find. I’m very close to my Cancer Agency so if it was offered here I’m sure I could manage but I suspect it’s more likely that I would need to go to Vancouver, a 90 minute ferry ride and probably hour drive away. That’s a bit of a different kettle of fish.

    I have no idea what your financial situation is but, in my case, I do have a little put aside for retirement. I figure, if I need to access that money for hotels, travel, etc. then that’s a good use for it. There are ways to get there without driving - flying, taxis - and those just require $. It’s one of the reasons I continue to struggle with the idea of medically retiring. I get that it’s unlikely that I need to worry about how high my pension is (I’m 59 … real retirement seems out of reach given liver mets) bu I do need to avoid stupid decisions that will bite me in the future!

  • candy-678
    candy-678 Member Posts: 4,074

    Sadies- I do have some funds set aside. But then with a hotel situation I am still alone. Yes, closer, to take care of the traveling situation, but still alone in the hotel room. And going back and forth to the cancer center.

    I guess I think too much. Just let things happen as they are supposed to. But, being alone in the "journey", "battle", whatever, is hard. The logistics of it all. And the emotional support.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Totally get it. I suspect I will need to learn to lean on friends.

  • ninetwelve
    ninetwelve Member Posts: 328

    I'm doing the MBC thing alone. Have a few friends and one brother left, but no kids or partner. I take it "one day at a time" or even, "1 hour at a time". I've learned to treat myself gently, as I would if I were supporting someone else. I suppose I will end up in the same convalescent center where I watched my mother and father die. I'm not really thrilled at the thought, but I don't want to think about alternatives to that, either.

  • finallyoverit
    finallyoverit Member Posts: 133

    Thank you ladies for all of your replies and support. They truly mean the world to me.


    exbrnxgrl ~ I’m totally in for that cruise! Boa

  • lehrski
    lehrski Member Posts: 68

    I’m alone. No husband, no kids. I live in the US and my parents live in Canada and they’re elderly. I have a good brother, but he lives in another state about 1500 miles away and has heavy work/family responsibilities. It’s hard sometimes. I see people at appointments with a significant other or kids and think it would be good to be able to share the burden. I have good friends that help out but it’s different that family. I really worry about when I can’t look after myself. The thought of dying alone terrifies me.

    Exbrnxgrl - I would totally go on a Hurtigruten cruise. I was going to do it before Covid. Then Covid then this stupid diagnosis ….

  • edge_of_no_return
    edge_of_no_return Member Posts: 41

    hello - this thread caught my eye. i got the mbc dx last summer, one vertebrae. i took arimidex + ibrance for close to 5 months before the se's came crashing down. i can do pain but exacerbated fatigue - i have fibromyalgia and the fatigue is already a daily battle - is the dealbreaker. so i quit them both and don't want to take *any* systemic treatments from here on out. why? because i also live alone and also have like 2 friends that get it (can't/won't share with family). and i work, and need to work for probably the rest of my life LOL (just turned 59). so - i'm probably idiotic for stopping the meds (will be starting rads next month) but who the hell is going to take care of me if i can't get out of bed? it's all a mess for those of us that don't have the support of family & friends. thanks for letting me rant.

  • candy-678
    candy-678 Member Posts: 4,074

    Edge- I understand. Rant away. I live alone, and go to my appointments on my own too. I was on Letrozole + Ibrance for 4 years, now on Lynparza. (My profile is wacky since the site issues). Yes the fatigue can be awful. I stopped work in 2019 (age 49) (2 years after starting the meds) and I am now on Social Security Disability. I usually take an hour nap most afternoons. I hate to read you stopped treatment due to the side effects, though I do not judge you. You have to do what you have to do. Have you talked with your MO about just using Arimidex alone? I know of someone with bone-only mets that is on it alone. Just a thought.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,646

    i live alone but do have children and grandchildren nearby. Candy’s suggestion might be worth discussing with your mo. I have been on an AI alone for over 10 years (Ibrance, Verzenio an Kisqali had not yet been approved back then). I am 65 now and just retired last June. I was a teacher so I have a pension but I also sub 2-3 days a week just to sock away some extra money but also because l love teaching. Please speak with your mo. It seems that you have limited mets which may well be treatable (sadly, not curable). Take care.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Edge, I am not completely alone but close. My 91 year old mother and I live together but dying before her is one of my biggest fears (no way she will be able to cope with the house, etc. on her own) so I expect to be dealing with end of life stuff solo for the most part. I know it seems impossible but I somehow think I will be able to sort it out with a few friends pitching in. I worked for the first five plus years of MBC but recently decided to step away. Best decision I have made. It’s a game changer and is giving me the space to not only tackle all the stuff I could never get to trying to balance work, home, dog and mom but is also allowing me to start planning ahead a bit, making sure I am ready for what comes and can draw on the supports that are available to me.

    I’m in Canada so don’t know what it’s like for Americans but my advice would be to not close any doors. You have minimal disease at the moment and it may well stay that way for some time. Hopefully radiation will take care of that met and managing on your own won’t be something you need to think about for a good long time!