Life does not end with a stage IV diagnosis (really!)

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  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited January 2022

    sunnidays, that’s so sweet! Congrats to both your daughters!


  • cowgal
    cowgal Member Posts: 625
    edited January 2022

    Sunnidays - Congratulations on your daughters both being engaged! It sounds like 2022 is starting off great for you!

  • sunnidays
    sunnidays Member Posts: 165
    edited January 2022

    We went to meet the parents of my daughter's indended on new years eve, it was a two-and-half-hour journey, by the end I really needed a pee concentrating on crossing my legs and not wetting myself put all thoughts of stage 4 cancer out of my mind having to concentrate on the hear and now dose wonders for changing perception.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited January 2022

    The here and now is all we really have! The past can’t be changed and the future can’t be predicted. A good philosophy to live by.

    Now that holidays and winter breaks are behind us, the reality of COVID and schools is becoming apparent. Although public schools in my county are still open for in person learning, teachers and staff are dropping like flies. Some have COVID but others are needing time off because of exposure from close contact. I subbed in my old classroom yesterday, I was in that room for the last 10 years, and that was a lot of fun. I’ll be working Thursday and Friday as well, at two different schools in my district. They were a great district to work for and I am happy to help them out. I am paid of course but they are really scrambling to get all classes covered each day. My gosh, what a mess!

  • sunnidays
    sunnidays Member Posts: 165
    edited January 2022

    More on the theme of life going on. I am getting used to my husband being retired at first it was strange as he used to get up at 6 am, so him still being in bed with me at 8 am is a bit discombobulating, he is having a massive tidy out of the spare room and found his 45-year-old college textbook on engineering and other mad stuff.

    Mostly its fun having him home all the time but it is an adjustment.

    He is planing to do some freelance work 1 or 2 days a week which will be good.

  • el_tigre
    el_tigre Member Posts: 453
    edited January 2022

    sunnidays, that would be strange. My hubby is home due to him graduating college a few yrs ago and being squeezed out by the younger generation. He's always home and when he gets a job (hoping working from home) it'll be weird to have him either gone at his job or awake at 6am lol.

  • Peachy77
    Peachy77 Member Posts: 2
    edited January 2022

    I love the refusal to give cancer the power it doesn’t deserve. I’m only 2 months into my MTNBC and I finally feel I’m over the mourning period it threw me into and am now ready to become educated on it. I attended my first support group online today and WOW it blew me away. So many treatments, reactions, and all with positive attitudes. Thanks to them and boards like these. Thanks to you all for sharing

  • elderberry
    elderberry Member Posts: 1,068
    edited January 2022

    Peachy77: I am sorry that you find yourself with MBC but welcome to the BCO. There is a thread just for TN. All of us are here for you.

  • sunshine99
    sunshine99 Member Posts: 2,723
    edited January 2022

    Welcome, Peachy77 (I love your name, by the way). When you get a chance, update your profile with any details you feel comfortable sharing. Some don't want to share anything, and that's OK.

    Before being diagnosed with Stage IV, I would "glance" at the threads on the "Stage IV Only" forum and thought that this was a wonderful, supportive group.

    When you are new you have myriad questions and since all of us are in the thick of it, you'll get some sound advice and counsel.

    My tip is that if you hear the word "palliative" used, don't freak out. It doesn't mean hospice and it doesn't mean you're dying tomorrow. Palliative is a word used to describe treating your symptoms and keeping you comfortable. Palliative radiation did wonders in reducing the pain in my hip.

    Again, welcome. Come back often and check out all the other threads.

    Carol

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited February 2022

    exbrnxgirl - I have always enjoyed your posts (since I joined stage IV) and honestly, you give me and I am sure others great hope that we can be long term thrivers or survivors. I can't believe a member on here sent you such a horrible PM. That is just awful and I am so sorry - thankful you stayed on BC.org. What I have learned is that there are SO MANY variables to this wretched disease. As I was stage I, and completed as much treatment as possible to get very low risk of recurrence. I was initially devastated, angry, terrified by my stage IV dx. Plus I had to fight to get scans which finally gave us answers, which still pisses me off . However, I have remained stable on first line and honestly, feel fine which is a huge blessing and has allowed me to feel more hopeful for now.

    I do not see a therapist and don't feel depressed. The "unknown" of both how much time I have left and how much time I have feeling good does get to me - I am fine planning 3-6 months in advance but am hesitant to plan out further (we do have a trip to Europe planned for 2023 but have not booked flights). I don't want to wait until I am really sick to retire. I don't want to retire now as I feel fine AND if I live more than 10 years like this, I would like the additional income. Honestly, the loss of Rabbit really shook me as she was stable on Ibrance and the blood clot that killed her came on suddenly. I think blood clots usually do and I am not sure if the blood clots were caused by tx but am assuming so. Due to all of this I decided to talk to a social worker/therapist from my Cancer Center via telemed. Appt was yesterday. She was kind, young and adorable and her advice was to focus on every day and keep making plans. I work as a real estate broker and once she found that out the conversation turned in to her getting her real estate license, how excited she is and asking me for advice....this happens a lot to me, with my Onc NP who was buying her first home and my new PCP. Sigh......everyone loves to talk about real estate! Not really helpful but was funny.

  • sunnidays
    sunnidays Member Posts: 165
    edited February 2022

    Well, it's a year since I was diagnosed with stage IV still working and life is pretty much as it was before diagnosed I find it kind of mind-blowing that things are still the same I am not sure what I expected.

    I have discovered Chesapeek shore on Netflix, complete escapist nonsense I'd love to live in the O'Brians house from the series the house and the views are amazing.

    Hope everyone is doing fine.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited February 2022

    sunnidays,

    Congrats on being one year in! For some of us, it is indeed mind blowing! I really do wish researchers could figure it out. In the meantime, enjoy each day as we never know what the future holds.

  • bmpntherd
    bmpntherd Member Posts: 24
    edited March 2022

    My birthday is unfortunately the same day as my 1 year cancerversary of my stage 4. I never liked celebrating but today seems worse- having to constantly pull my cbt techniques to refocus. Currently healing from whole brain radiation which was a bitch- 6 weeks out and still fatigued.

    Thoughts wise people- winter and WW 3 are not helping.


    thanks

  • Kikomoon
    Kikomoon Member Posts: 358
    edited March 2022

    bmpntherd, how are you doing after WBR?
    Is anyone still on this crappy site?
    Is anyone doing anything interesting

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited March 2022

    kikomoon - my 58th birthday is on Friday 4/1 and my husband and I are taking a trip to NYC. I'm excited - we will see 1 musical (possibly 1 more ) and enjoy the museums, restaurants and see some friends. We leave tomorrow and return Sunday . Fulvestrant shot, blood work and telemedicine with my onc on Monday 4/4and back to work .

    Bmpntherd- hope you're feeling better!


  • sondraf
    sondraf Member Posts: 1,688
    edited March 2022

    We are headed to Florence, Italy for four days in late April which Im looking forward to - its at least something.

    Currently also having a raging argument over booking to go to Thailand in late May/early June because a) its my 45th birthday and Ill be damned if Im spending a third birthday at home and b) I was promised a beach when all this crap kicked off in mid October. Ive been through surgery, a lot of rads, progression and a drug change and I want a break. I don't want to wait and "lets just go later in June or early August" - partner is about to accept a new job so Im not sure when he thinks we are going on holiday next. And with the way prices work in this country and school holidays, you really have to hit certain dates before summer or forget it.

  • aprilgirl1
    aprilgirl1 Member Posts: 800
    edited March 2022

    SondraF- im with you on booking the trip to Thailand - we live in uncertain times with ou dx , and add in the pandemic and everything else . Florence , Italy sounds like a fun trip too! Hope you are feeling better after surgery , rads etc.

  • Kikomoon
    Kikomoon Member Posts: 358
    edited March 2022

    Aprilgirl, happy early birthday! A trip to NYC sounds really fun.

    Sondraf, I agree with going sooner rather than later. We planned a Trip to Southern California and Vegas, leaving today. Planned just 2 weeks ago. I told DH no we can’t wait we have to go now. I’m just excited to get out

    Florence sounds amazing! One of my favorite places. I am super nervous with Covid and flying but everyone keeps telling me to relax so I will really try. Also plan to mask up indoors in Vegas and eat outdoors. It’s not really our scene but thought it would be fun to check out all the crazy hotels and such.

  • elderberry
    elderberry Member Posts: 1,068
    edited March 2022

    To My "Holidaying Stage IV Sisters" Yay! I would love to go to Italy. Thai - not so much as I am not good in heat and humidity but I hear it is a wonderful country. We got a virtually free trip to Vegas in Feb 2019. We flew on out Save-On points and our condo was free. It is crazy there. I found it a bit gauche. But the fake Eiffel Tower is as close to Paris as I am likely to get. Not my DH's and my scene either but he was always curious about it so we can now tick that box off. Casinos had a weird vibe. I am not a gambler so they were easy to ignore. But slot machines are even in gas stations and grocery stores.

    March marks my third cancerversary -- not dead yet!

    aprilgirl1: Happy Birthday in advance. Have fun in The Big Apple.

  • chicagoan
    chicagoan Member Posts: 1,060
    edited March 2022

    Aprilgirl-Hope you have a fantastic birthday weekend in NYC! Do you know what musicals you are going to see? I went in January to see Music Man and then picked up tickets to MJ the Musical for my first night. Loved them both but actually preferred MJ.

    Sondra-We get you. Of course you should go to Thailand sooner rather than later. When my parents argued about a trip, my mom would just book it and then my dad would have a great time but probably can't recommend that strategy. One of the good things about being single is that I can just go with a friend or myself. Hope you and your SO have a wonderful time in Florence. I've heard it is beautiful.

    I was supposed to be at the Grand Canyon this week. The trip was originally scheduled for April 2020-cancelled for Covid of course. Now I am home with a broken leg but I don't feel too bad about it. It's been a triumph for me just to walk with a cane and get outside for a short errand.

    Happy Cancerversary Elderberry! May you have many more.

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited March 2022

    sondra, can you try negotiating something to go on that trip? By that I mean, say there’s something your husband’s been wanting that you’ve been putting off for whatever reason. Can you suggest that if he agrees to the trip in May/June, he can have something in return? I do this sometimes when I want something that dh is dragging his feet on. Or if there’s something he really wants, like that new fishing boat, I’ll say “well, you have to help me update the kitchen, then.”

  • Kikomoon
    Kikomoon Member Posts: 358
    edited April 2022

    happy cancerversary elderberry! Chicagoan I hope your leg heals up fast.

    Well we took our first flights since Covid. I felt pretty ok on the plane with everyone masked up and sitting in their spots. Although they are handing out snacks and drinks again (southwest). The airport (San Antonio) however, was a mess. Lots of people, especially In the holdroom during boarding. Not sure I will be able to do it when then remove the mask mandate for flying

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,289
    edited April 2022

    I hope everyone is finding something enjoyable to do as spring comes upon us. Due to the difficulties the “new” site has created, my posting has been limited. Life is perking along. I have been subbing a lot which I greatly enjoy. It’s the grandparenting of teaching!

    Older dd and family are settled in Napa and it is a lovely place to visit as well as being only an hour and a half from my home. Oldest granddaughter had COVID and then a few weeks later younger dd and son in law had it. All were fully vaccinated and had very mild symptoms.

    Some of you may have heard that there was a huge fire at a Home Depot in San José on Saturday evening. It went to 5 alarms, roof/ceiling collapsed and it is destroyed. My younger dd lives about 2 miles away and they were advised to shelter in place and keep windows closed. It is a miracle that no one was hurt. Nothing about this is funny but this morning a reporter on our local news said the following: A spokesperson for Home Depot said the store would be closed today.” You think 😂

  • lehrski
    lehrski Member Posts: 69
    edited April 2022

    I had a wonderful spring break road trip to Utah. Visited lots of family and got in six!! days of skiing. Three days and a break then another three days. Thoroughly enjoyed the beautiful canyons. The legs are still recovering, but it was worth it.

  • Kikomoon
    Kikomoon Member Posts: 358
    edited April 2022

    lehrski, that trip sounds amazing! I have never been skiing but can imagine my legs would be jelly after just one short ski!

  • bigpeaches
    bigpeaches Member Posts: 238
    edited May 2022

    Here I am, 4 years holding strong! Was supposed to go on a trip to Yellowstone and Jackson Hole but Covid cancelled that and we're still waiting on the re-booking, we shall see. Other than that, just doing weekend trips with the hubs, tomorrow we'll be married 27 years!

  • elderberry
    elderberry Member Posts: 1,068
    edited May 2022

    bigpeaches: Happy Anniversary in advance in case I am not on the Forum tomorrow. Congratulations on 4 years as well.

  • cowgal
    cowgal Member Posts: 625
    edited August 2022

    I know that this thread has been quiet all year but I bet that some of us have done some things this year non cancer related. I have wanted to take a jewelry making class for years but unable to do so working full time. Our local community college offered an enameling jewelry course a few Saturdays ago that lasted 6 hours. I wasn't really sure exactly what enameling entailed but signed up and had a wonderful time and now enjoy enameling and learned how to use a jeweler's saw to cut out your designs on metal. The instructor teaches the full jewelry making course so I talked to him about maybe doing that as a series of Saturdays next summer and he is open to that!

  • tina2
    tina2 Member Posts: 758
    edited August 2022

    Cowgirl, that's wonderful. Enamel can be gorgeous--the designs, the colors. You can make so many beautiful things!

    Tina


  • el_tigre
    el_tigre Member Posts: 453
    edited August 2022

    That sounds like so much fun cowgal!

    I went ahead and indulged in watercolor art. Let's make Art website has sales and deals and I bought 2 art boxes. It was fun and the step by step tutorial and some background music made it very relaxing.

    tigre