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    kdiamond started following

    User: KatsPackers

  • GregP_WN's Avatar

    GregP_WN wrote on kdiamond's wall

    Welcome to WhatNext, we are sorry for your need to find us, and for your loss, but happy that we can help you. There are a lot of great people here that have already been through what you are facing and are willing to help you get through it too. If you have questions about anything just post them on the Questions Page. Others will chime in with their personal experiences.

    If you need help navigating the site, please contact me, we are happy to assist. We also have active social pages, you may wish to search those out also. Take some time and poke around the site, there is a world of information here that you will find. The more you dig, the more you will find.

    We have an opportunity for you to make your voice heard with our partner Rare Patient Voice (www.rarepatientvoice.com) to be invited to qualify for surveys and phone interviews for projects that apply to you and if you do qualify you will be compensated on a $100 per hour basis. There are pharma companies that would like to hear about your experiences with certain drugs or side effects. Your information might help develop the next generation of drugs.

    Rare Patient Voice will send you an email inviting you to join their panel. If you say no or don't respond to them at all you will not be added to their panel.

    If you say yes be assured your information is only shared with Rare Patient Voice and is treated with the highest degree of confidentiality. If at any time you want to opt-out of receiving invitations to projects you can do so immediately.

    Thank you for joining us, if you have questions please contact us.
    4X Survivor

  • MyLungCancer's Avatar

    MyLungCancer wrote on kdiamond's wall

    Welcome to the site, I've found this a great place to connect with other people that are going through it too. We seem to understand what it's like better than our average family or friend. I hope you're doing well with yours.

  • kdiamond's Avatar

    kdiamond shared an experience

    Procedure or Surgery (Surgery): I was told the growth was large enough to warrant the total removal of my thyroid and that this was the first step of treatment. I did a lot of reading and watched a lot of videos about the procedure and always ended up crying, feeling bad for myself. All of this happened during my winter break. I had just started graduate school, and was debating whether I should go back for another semester with the news that I had thyroid cancer only a week before classes resumed. I also thought about money. I had no means to pay the medical bills I had already accumulated, even with insurance, and had a lot more coming! I had to be in school to get paid under my research assistantship contract since there was no chance of getting a new job when I would be recovering from surgery and radiation. I decided I would go back to school and work as I needed the money, and I needed a distraction. I spent all day crying and feeling sorry for myself for about a week after the diagnosis, and I finally decided to tell my graduate advisor what happened, and that I still wanted to be an active student. He agreed to keep me on the project, no questions asked.
    I went back to my college town and my home with my boyfriend to make arrangements with my professors in preparation for surgery and to help myself settle into my new reality. Next thing I know, I’m back on a plane to my hometown for surgery.
    Right before the surgery, the surgeon told me they found suspicious lymph nodes. He said he would remove them and would have to make a larger incision than we discussed. Right before I was put under, I was scared my incision would be in the shape of a “L” and I felt sorry for myself again.I felt superficial for worrying about my scar at that moment. When I woke up, the first thing I did was cried before the medication pulled me back into unconsciousness. I remember being moved to my room for the night since my calcium levels were low. I don’t remember much from the hospital. Lots of sleeping, people moving in and out, lots of medication, lots of painful trips to the rest room. Only my family visited since I didn’t tell anyone about my diagnosis. I asked those who knew to not tell others since I needed time to absorb it myself and didnt want to deal with other people. I’m glad my family was there.
    I went home after 2 nights at the hospital. I slept a lot at my parents house and my younger sister brought her new kitten to lift my spirits. He liked tonsleep on my neck and pur. I felt like he was a little furry angel.

    It was on SuperBowl Sunday when the pain began. The numb drowsiness I felt for about a week was wearing off as I stopped taking the prewcribed main medication.. I had headaches, fever, chills, sweats, loss of appetite, dizziness, nauesea, fatigue, weakness, blurry vision. I started taking the pain medication again to relieve these symptoms.
    I was talking to my boyfriend after crying from the horrible symptoms. I was home alone and didn’t know what to do. He asked to chat with video, and when he saw me he told me to stop taking the pain medication. He asked me what I was taking. I didn’t know since I was just taking whatever the nurses gave me in my stupor at the hospital. I grabbed the bottle and showed him. He told me they were opioid pain drugs and that I was exhibiting symptoms of withdrawal. I believed him. I told my family about this, and they didn’t think such addiction could happen so quickly. I think it’s important to spread the word about how addictive opioids are.
    I finally felt better after the worst of the symptoms broke a day or so after I completely stopped taking the oxycodon.

    A side note: I debated where I should get treatment. My hometown where my parents,sisters, and childhood friends were, or my college town where my boyfriend and new life was. Just due to doctor referrals, I ended up doing everything in my hometown which made it a mess as I had to go back a forth so much. I didn’t know local airlines offered deals for cancer patients receiving treatment then, but that would’ve helped immensely. There is also tension between my family and boyfriend, and they didn’t make an effort to overcome these tensions for my sake during my surgery. My boyfriend wasn’t there, but my family was.

  • kdiamond's Avatar

    kdiamond shared an experience

    Oh No (Health insurance issue): I convinced myself that the bump on my neck was nothing. It didn’t hurt, so it was fine. My boyfriend said it was fine, my younger sister said it was fine, I thought it was fine. I was young, active, healthy, fine. I cancelled care with the clinic enraged by the bill for a visit where I filled out paperwork, and declared I would just go to my sister’s doctor in my hometown, who she said was sweet and not intrusive. I mentioned the bump to this new doctor, and she didn’t seem worried like the pushy doctor did. She said an ultrasound would be a good idea just in case, but not to worry. I felt relieved and to avoid bills, I put off the ultrasound. It wasn’t until December when my mom said she was taking me off her health insurance to save money that I mentioned the bump to my mom for the first time. She was concerned and told me to have it done before the end of the year. I squeezed in an ultrasound appointment on December 26 when I was home for winter break. On January 2nd I got a call from the new doctor. She sounded stern, completely different from when I first met her. She said I needed to do a biopsy immediately. I told her I was now uninsured, she said it didn’t matter because it the results were serious. . I hung up the phone and cried. I went to the hospital a few days later and forked up all my savings for the biopsy, and set up a payment plan for the rest of the bill. I was called into the new doctors office a few days later where she told me I had thyroid cancer. Fortunately, miraculously, my mom was able to update her insurance plan and get me back on before my thyroidectomy 2 weeks later.

  • kdiamond's Avatar

    kdiamond shared an experience

    Oh No (Problem with doctor): It was my senior year of college and it dawned on me that I didn’t have a doctor and hadn’t had a basic check up since I was in elementary school. The most I had done was a physical exam to do high school sports. I decided to apply to be a new patient with a clinic in my college town that would accept my mom’s work insurance. I went to the clinic to fill out paperwork, but was unexpectedly ushered into an exam room to meet and greet my new doctor. She came in and bombarded me with questions with no topic off limits! I felt my privacy was invaded, and before she left she asked to feel my neck. She found a bump I had never noticed before. She gave me a hefty list of tests to do and medical history to collect. I left overwhelmed and scared (she said cancer in passing so I was in shock). On top of it, I got a nice bill in the mail a couple weeks later for a visit to the doctors to fill out paperwork and a list of expensive to dos. I was in college, I had no money!