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Bouncing from hope to despair. Ugh

ericalynn Member Posts: 21

Is it normal to have really hopeful days and the very next to just feel despair? I would love to hear those amazing stories that are out there with long life and stage 4. I am Her2 positive Mets to liver and.chest nodes.

My anxiety could be up because this month is my first pet scan since completing thp in July.
So, once again, share your hope !! ❤️❤️🙏❤️


  • illimae
    illimae Member Posts: 5,619

    Erica, yup, it’s totally normal. When I was first diagnosed in November 2016, I made my husband give me my anniversary (December 24th) present early in case I did make it. Now nearly 6 years later I am cautiously considering a big trip/party for my 50th birthday (almost 3 years away). Progression on scans and changes in treatment tend to bring me down but I’ve learned not to stay down. I find having something to look forward to helpful, whether it’s in a few weeks or months. I also go with how I feel overall and if I feel decent by normal standards often, then I figure I’ve got some time, that lets me refocus on now and not what ifs.

  • nkb
    nkb Member Posts: 1,561

    Erica- I totally agree with Mae- some days I am really happy and don't spend much mental energy in cancer land. Especially if I have goals or fun things planned. Other days I am low energy and scared- every time I get an email saying a lab is available or a scan- I get anxious re the results. . New bad news is a gut punch, but, then I adjust.

    I try to stay optimistic (not because cancer cares) but, because it is a much happier way to feel for me.

    Lots of good treatments out there - after your PET- plan the trip! (with trip insurance) live your life while you feel good.

  • divinemrsm
    divinemrsm Member Posts: 6,155

    ericalynn, I saw you were diagnosed in January. You’re still very new to the diagnosis. Yes, the roller coaster of emotions is something many or most of us have dealt with. My diagnosis is a bit different from yours, being er+ her2- with mets to the bone, I’ve been living with mbc since I found the tumor in late 2010. The first year was one of the hardest for me. Finding the right anti-anxiety medicine was a huge help and allowed me to move forward with my life and not be paralyzed with fear. I can still get anxious but I’m usually able to get busy and it goes away. I would not be able to do that without the meds. Some women find an antidepressant works well for them. For me, the anti-anxiety meds were most beneficial. Please consider talking to your doctor (I worked with my pcpc on this) if you feel meds might help.

    I totally agree with the advice here that having things to look forward to is a great way to combat the emotional lows. These can be big or small or a combination of the two. Planning to go to a concert, on a day trip, updating a room in your house, going on shopping trip or a nice vacation, get creative and make plans. Rinse and repeat! It’s kinda like its own therapy and can get addictive in a good way.

    That said, it’s okay to have the difficult emotions and it’s best to work through them. I have an introspective side so it’s necessary to allow space for all my feelings. I don’t want to get stuck in the lows but I acknowledge them.

    I wish you the best with your upcoming scans!

  • cowgal
    cowgal Member Posts: 625

    ericalynn - My MBC diagnosis was officially September 2019 and was a recurrence from a Stage 2B diagnosis in 2010. Like the others have said, there are good days and bad days. After I was got the stage 4 diagnosis, I definitely was faced with the difference between my stage 2B diagnosis and Stage 4 treatment immediately. At stage 4, I was given a folder with all sorts of stuff they went over with me for dealing with nausea, mouth sores, etc. for chemo that would be starting (I didn't have to do chemo at stage 2B) and there was end of life stuff so that you basically had all of your affairs taken care of. On the way out the door, I picked up the little booklet at my oncologist's office on MBC and took it home to read. The booklet basically said to enjoy what little life you had ahead of you and spend it with family. The booklet offered no real hope. The next appointment with my MO I told him about that between the folder and the book, I felt like I was being told to enjoy life and that your days are numbered. He told me that he had not read the booklet and was glad I told him about it and told me that he had quite a few ladies that he treated that were over 5 years with MBC. Still none the less, I found that I didn't want to buy anything for myself because I felt like I probably wouldn't be around long enough to justify spending the money. I also wanted to go through things and purge stuff I didn't need, which I am always needing to do anyway but secretly I was trying to make it so my husband wouldn't have to do all of that after I was gone. Lot's of things came to mind. How long could I continue to work? What would we do for health insurance and we have it through my job? How can I make things easier for my husband? I am sure that I am not the only one that felt this way and I am sure that others may have responded differently...and all of that can be normal. We do not all deal with things the same way.

    I am a little over two years in on this crappy diagnosis and I do have some significant side effects from the treatment that I continually try to improve upon as best as I can and I am currently NEAD! I was able to go travel to go see my college football team (Arizona State Sun Devils) play! I am already scheduling to go see them again next year as well as doing some other things so yes, do make plans to do the things you want to do. I have also gotten over the not buying anything for myself phase.

    This site has helped me so much and I encourage you to find the threads that apply to your specific treatment as you will find a wealth of information and be able to ask about those specific treatments. I hope you will find that the stage 4 forum offers a place for you to gain knowledge and information as well as a place to give and receive support.

  • elderberry
    elderberry Member Posts: 1,065

    ericalynn: What you are feeling is totally normal. When is your PET scan? My MO told me that he has had patients with 10 years MBC - that was before I even started treatment. He doesn't sugar coat but he offers the possibilities of living a decent quality of life for a longer time than I ever thought. I had thought "That's it. I am dead already"

    I still can't imagine planning a trip sometime way in the future. Like summer 2023 but I have many days where my MBC is really at the back of my mind. I found an old post from here when I was diagnosed and I was a total basket case. I frankly and blessedly didn't remember being such a mess until I read it again. I should have been scooped up and taken away in a straight jacket. So, ericalynn, I really do UNDERSTAND.