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  • Lyssa's Avatar

    Lyssa shared an experience

    Decision Point (LEGAL SUIT): Please if anyone reads this and would like to help. I think that I must file a lawsuit if only to save others from the pain and suffering that I was/am still subjected to. I have read many others experience with breast cancer, and have not ever read that this is a common practice of doctors. I fear that I now have PTSD. IT SADDENS ME GREATLY TO KNOW THAT AFTER ALL THIS TREATMENT....I MAY NEVER BE ABLE TO SEE MYSELF ANYWHERE NEAR THE SAME AGAIN.

    4 Comments
    • legaljen1969's Avatar
      legaljen1969

      Lyssa, first let me say that I feel just terrible that you have had to endure such unpleasant physicians. It certainly makes a terrifying situation (cancer) even more difficult to face. It's a little easier when you feel like your physicians care about you. Often it's the doctor who lacks bedside manner and compassion. My primary care doctor has the worst nurse ever. My doctor is amazing. His nurse? Straight from the pits of the fiery furnace. Ugh!! Anyhow, you certainly have the right to seek other care.

      I have found that oncology practice providers are either very jaded and closed off OR they are some of the most compassionate caregivers you'll ever know.

      9 months ago
    • legaljen1969's Avatar
      legaljen1969

      I do not wish to sound patronizing, but before you seek legal recourse, know that being a jerk is not illegal. Unconscionable,yes. Illegal, no.
      You may have gotten a sense from some of your other caregivers if they think the early removal of the drains rises to the level of malpractice. There are always those doctors that people accept, but you can see the raised eyebrows or rolling eyes, or the " Im going to check with my supervisor" Unfortunately hospitals seem to be the place we are most likely to pick up an infection. I feel certain there is probably a universal standard at which it is acceptable to remove them, and some doctors may have different measures beyond that. There may have been some reason your doctor took them out earlier. Perhaps signs of infection existed, prompting the early removal. Causation can be tricky. It seems funds are an issue for you, but perhaps you know someone who could review your records. I get my doctors notes via hospital portal after each visit. I review them all the time. I know there are more " behind the scenes" notes but I review what I get for any errors.

      Talk with other people and get recommendations for other oncologists. I definitely think a second opinion is in order if for no other reason than your peace of mind that either 1. You are getting medically appropriate treatment and need a more caring environment OR 2. To validate your feeling that something is amiss and you need a change for your well being.

      I would also recommend a therapist or other mental health professional to come alongside you and help you untangle some of your fear and apprehension.

      Maybe it's just a terrible fit. Maybe it's malpractice. Maybe your oncologist is a heartless jerk.

      It certainly can't hurt anything to talk to an attorney. That's why they offer consultations. It doesn't mean you're going to have to file suit. It just means you're asking someone with the appropriate expertise and knowledge to find out is something is wrong that they can help you remedy.

      You go to a mechanic to fix your car. Sometimes you need a new car. Sometimes it's just a sound you've never noticed before.

      Just ask the questions.

      I hope you find answers that give you peace of mind.

      9 months ago
    • Carool's Avatar
      Carool

      I’m writing only to add that I was in therapy (through a clinic, as I couldn’t afford a private therapist) prior to, during, and after my breast cancer treatments, and I found therapy to be of great help.

      9 months ago
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    Lyssa shared an experience

    Other Care (Palliative care): I work for a wonderful company that gave me 26 weeks off with pay. I have ran all my "keep my job" time off that there is available, and have started back to work part time. My new FEAR is making my bills each month, as I am single and have always worked hard to save and look forward to retirement...that's way down the road now as with cancer and insurance deductible I have all but drained my savings. I keep my head up high and my faith that the Good Lord will always see me through.

    3 Comments
    • MarcieB's Avatar
      MarcieB

      Your company must value you highly! I think it can be difficult to *re-join the world* after living in the cancer bubble for so long, but I also think taking baby steps - like working part time, can be so helpful. My prayers to you to get stronger every day!

      9 months ago
    • Carool's Avatar
      Carool

      I second what MarcieB said, and I hope you can rest when you need to, even at work. It’s great that you work for a wonderful company. When I was having treatment, my company was very supportive, and it made a big difference to me (I too worked part-time).

      I send you good wishes. I hope, too, that you can free your mind of troubling thoughts (however realistic they may be), at least for some time each day.

      9 months ago
    • legaljen1969's Avatar
      legaljen1969

      Is there any way for you to get short term or long term disability or go on Medicaid or something? Is there any assistance that any of the medications offers. Like sometimes you will see a commercial that says "If you are unable to afford your medication call xxx or contact xxx. Help may be available." Sometimes I even get these little cards in the mail for Good Rx and such as that. Maybe if you have any oral medications you get through a regular pharmacy- perhaps some medication discount program could help?
      I know you have probably thought of all of this a hundred times over, but sometimes maybe someone throws something out that will help.

      9 months ago
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    Lyssa shared an experience

    Procedure or Surgery (Double Mastectomy): My mastectomy at first went well. Then again with doctors this surgeon took my drainage tubes out too early and did not prescribe antibiotics. I then got a terrible infection in my left breast that became very infected. I ended up in the hospital for strong antibiotics and another surgery now my chest looks awful like I had an autopsy done. Almost 4 weeks now and I still have drainage tubes in and staples all over my breast. It's hard to not feel FEAR and anxiety attacks linked to my treatments. I pray every day that the good Lord will see me through all this torcher, and I will once again be LISA SEWELL as the original Lisa seems to be long gone.

    7 Comments
    • legaljen1969's Avatar
      legaljen1969

      Lyssa, I am so sorry you are having such a rough time of it. As all of the others have said, it is not unusual that cancer changes you. Let me tell you this. It's not unusual or bad to be sad, mad or confused when things are going badly. They are emotions. We all have them and shame on anyone who tries to deny them to you.
      Sometimes we feel thankful, resilient, and joyful that we are still on the winning side- that is alive and able to receive treatment. I know treatments can be really difficult and it sounds like that has been the majority of your experience. I hate that for you.
      I think 2020 defined "new normal" for all of us. There seems to be a demarcation line between Pre-COVID and After COVID came into our lives. There really is no going back. Our world will never been quite the same again. The year of 2020 was one I hoped would be one of my best- the year I was 50 and the year I celebrated my 25th anniversary. Well, I was 50 and I still had my 25th anniversary, but none of it felt celebratory. Fighting cancer in a COVID world felt like anything but victory. In December 2019, I found out I had cancer and my treatment started in January 2020. To further accentuate the change, my first oncology appointments were on December 31st- proof positive that life as I had known it was about to change. That my "before" was ending on December 31, 2019 and my "new normal" was going to move forward starting January 1. It all felt like a losing battle. Now, after time to reflect, here are my positive takeaways.
      1. A lot of the "stuff" in my life doesn't matter so much any more.
      2. Fighting cancer during COVID gave ME a chance to deal with it on my own terms and my WhatNext friends became my tribe, my community. I didn't have to deal with all of the "just be positive" people. I was making friends who knew the drill.
      3. The entire world was grieving a pre-COVID world so I feel like I got to transition into my "new life" with the rest of the world. Everyone was having a rough time, so when I felt out of sorts- so did everyone else. For different reasons, but still...
      It feels really crummy not to feel like the "original" you.
      But here is my take- you are still the "original"- the unique you- feelings, struggles, wins, losses and all that makes you YOU.
      We are all here for you- whatever version of YOU is present on any given day. The mad, sad, confused, hopeful, resilient.... whatever Lyssa you are on any given day.

      9 months ago
    • Carool's Avatar
      Carool

      I join legaljen in saying we are here for you, Lyssa.

      9 months ago
    • petieagnor's Avatar
      petieagnor

      Welcome to WhatNext.
      I agree with Carool. Cancer changes us, in more ways that I'm learning every day. I've been on chemo for 5 1/2 yrs now, just to keep my cancer at bay. It's hard emotionally to keep a positive outlook/attitude.
      I agree that there is always a fight. Sometimes, it is with the doctor over treatment. I question everything; keep a detailed log; seek second opinions; take care of self first; find other options if needed.
      I wish you the best of luck on your journey.

      3 months ago