Brain Cancers

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    Community Voices

    I'm new here!

    Hi, my name is Sad_Dad. I'm here because my demons are winning and I am not sure where to turn. I tried talking to my spouse about it which has helped in the past. It seems everyone is just done with me and my only reason for being here is to provide for my family. I barely make ends meet working 60 plus hours a week. My oldest daughter has brain cancer and just finished Chemo and will begin Radiation in August. She does not live with me but I have always been here for her. I dont foresee me being around much longer if I cant get all the bad out of my head. I think thats whats wrong. I honestly have zero idea why I am so down.

    #MightyTogether #Anxiety #Depression #OCD #Grief

    9 people are talking about this
    Becca R.
    Becca R. @beccar

    How Ketamine Helped Me Realize My Suicidal Thoughts Weren't Accurate

    This past week, I started having ketamine infusions to manage my depression. While I’ve only finished one week of the 2x/week for three weeks protocol for initiating ketamine before moving on to the maintenance phase, it’s already been an eye-opening experience. Honestly, when I began the infusions, I had no clue what to expect. I never experimented with drugs or drank alcohol, so I had no clue what it would be like to have a mind-altering experience. The first infusion felt like a Novocaine shot to the whole body mixed with being in a room of swirling colors. The second infusion was way different. I felt like I was inside a “Planet Earth” filming with David Attenborough’s voice narrating in an ocean full of whales. I thought about my aunt in her last days before passing from brain cancer. I imagined her last days felt like I did in the moment influenced by ketamine — relaxed, peaceful, pain-free, and able to hear the soft music playing in the background. While I used to imagine my aunt was uncomfortable, I now have hope that maybe her last days weren’t as painful as I’d imagined. I thought about my cousin who died by suicide and had a bit of an epiphany about my own suicidal thoughts. Perhaps I’d been told about this concept in the past but unable to appreciate it in its entirety until now. This is when the thought came to me that maybe my constant suicidal ideation isn’t really accurate, but rather a habitual thought that I’ve been conditioned to turn to whenever I get uncomfortable. So, what do I mean suicidal ideation became a habitual thought and may not be accurate anymore? As I began ketamine, the advanced practice nurse prescriber (APNP) described the treatment as having to forge a new sledding path while the old one seemed to be running smoothly. This is how I think of my suicidal ideation — whenever things get tough, I immediately take the “I need to die” path because that’s what I’ve done for the last 11 years living with my depression. For so long, I thought “I need to die” was an accurate thought because I heard it over and over in my head to the point I believed it with every fiber of my being. But my experience during ketamine this week pointed out that “I need to die” may really have just turned into a habitual, comfortable thought. And now, I know I need to work on reframing that thought and carving a new path for my thoughts to evolve into. I know my suicidal thoughts will likely come back and I will believe them to be accurate thoughts. For now, I think “I need to die” is my default thought by habit when life gets tough and I have a lot of thought challenging ahead in my future to try to alter these thoughts to be more accurate, such as “I don’t want to live like this.”

    Leslie A. Zukor

    President Biden Relaunches 'Cancer Moonshot' Program

    On February 3, 2022, U.S. President Joe Biden relaunched the White House’s “Cancer Moonshot” program, with the goal of developing innovative new treatments for the disease, as well as eradicating it altogether. The objective is bold, namely, to reduce the cancer death rate by at least 50 percent over the next 25 years. Biden had initially spearheaded the effort in 2016 after the death of his son Beau to brain cancer at age 46. The original initiative was funded at 1.8 billion dollars over a seven-year period. 400 million dollars of the original amount is still scheduled to be distributed over 2022 and 2023. While the current rededication does not come with the allocation of new funds, Biden is overseeing the creation of a “Cancer Cabinet.” This collaboration is composed of representatives from the departments of Health and Human Services, Veterans Affairs, Defense, Energy and Agriculture, in addition to the Environmental Protection Agency, the National Institutes of Health, the National Cancer Institute, and other members of the executive branch. It will better coordinate efforts at fighting the disease. Biden, who made a vow in 2016 to cure cancer, urged Congress to allocate funds to his new Advanced Research Projects Agency for Health (ARPA-H), which spearheads innovation in treating it, as well as Alzheimer’s. According to a White House official, mRNA technology, which was integral to the COVID-19 vaccines by Pfizer-BioNTech, Moderna and others, holds promise in combating cancer. In addition to its current efforts, the White House will also host a Cancer Moonshot Summit, “bringing together agency leadership, patient organizations, biopharmaceutical companies, the research, public health, and healthcare communities and more to highlight innovation, progress and new commitments toward ending cancer as we know it.” In the fight to cure cancer, the Biden administration wants to be held accountable. It launched the Cancer Moonshot website, where Americans can check the progress of the initiative, as well as share their stories and ideas about combating the disease. In the short term, President Biden emphasized that over 9 million Americans had missed their cancer screenings over the past two years of the COVID-19 pandemic, and urged people to call their doctors to schedule new appointments. “The experience of cancer — of getting a cancer diagnosis, surviving cancer, losing someone to cancer — has touched virtually every American family,” the website read. “This is personal for the President and First Lady, like it is for so many of you.”

    Learning to Live With Regret After a Sibling Dies of Cancer

    It had been a long day. We had spent most of the day working outside, helping my sister get her flowerbeds ready, and I was beat. Our plan was to go home, clean up, and come back for dinner. When we got home and cleaned up, I was exhausted. She called me and asked if we were heading over. After a pause, I said, “I’m just too tired, I think we will skip tonight and catch you later in the week. I love you. Bye.” And with one sentence, I missed the last opportunity I would have to spend time with her. Our Saturday was full. It was a time of family. We spent the day, as family and friends, helping my sister and brother-in-law take care of things around the house. While we worked outside, my wife had spent the day inside with my sister and my daughter and nephew, playing and visiting while my sister recovered from her latest treatment. It was a good and fun day helping her accomplish things she simply did not have the strength to do. Her cancer battle was beginning to take its toll, and she just could not keep up with everything. The last six months had been a whirlwind. After the diagnosis of brain cancer, treatment had begun swiftly as we rallied around her and her family, supporting them on this new and difficult journey they were walking. It was a terrifying and stressful time, but also a time that brought us together as a family in ways we had not been before. We looked for ways to spend time together and for those six months, we were inseparable. But not that night. That night I was tired and just didn’t feel like going out again. I was counting on the fact that I would have other days with her, but I did not. When I got the call the next morning that she was in the hospital and not responding, even then, I did not fear the worst, and assumed like many things there would be more opportunities in the future, but I was wrong. By the time we got to the hospital, she was barely responding. In so much pain and on so many medications, she was out. We tried to interact but barely received garbled groans in return. When the doctor came in, it was not good news. The tumors were growing and most likely she would never wake up. Our family was devastated, but on top of that, guilt began to wash over me. Why had I done it? Why had I chosen rest over time spent with her? My last conversation had been to say that rest was more important, and that I did not have time to get together. In a sense, I felt like I had denied her dying request, and it was a decision that haunted me for years. I had squandered my last opportunity to spend time with her. These were the regrets and guilt, whether justified or not, that were going through my head. Mentally and emotionally, I beat myself up over and over again, and felt as though I had let her down, and that I had not been there for her when I could have been. In some ways, I condensed our entire relationship down to one singular event and beat myself up for being selfish. In reality, this guilt and these feeling were not true and honestly were not fair to me or to our relationship. The regret poisoned my soul and for years I could not forgive myself. In reality, though, there was nothing to forgive. Me not going over there did not negate the love I had for my sister, it did not negatively define our relationship, it was simply a choice, just like the hundreds of others I made each day. Do I still regret missing that time? Absolutely, but I’ve learned to give myself that grace, and I have forgiven myself for that choice. Living with regrets can be hard and places a burden on us that we unfairly bear. If we are not careful, it becomes the entirety of our relationship and overshadows everything. It also focuses us on negative instances, instead of focusing and remembering the good and positive things that made our life and that relationship so wonderful. While these regrets can have the positive effect of driving us to treasure each moment and the time we are given, if left unchecked and not dealt with, these regrets can grow into anger, bitterness, and depression that can greatly impact our lives and the lives of those around us. We all miss opportunities we could kick ourselves for later, but even in these missed opportunities, we must give ourselves the grace and forgiveness to see the events for what they are and treasure the memories and times we had together. Sometimes, the greatest gift we can give ourselves and others is forgiveness and grace, and until we do that, we can never truly move on and begin to heal from our loss. Don’t let a regret or mistake define and encompass the relationship that was so special to you. Your relationship is more than that regret. Honor their memory by remembering this and focusing on all that was good and special about this person that no longer walks among us.

    Community Voices

    My uncle is dying

    I am only 20 years old and have never had a close family member pass away. Does anyone with more experience have any advice for how I can support my mom as she comes to terms with the impending loss of her brother? I am worried about her and even more worried about my grandma.

    I don't know, it's just going to be so strange to see him this Christmas and know it's going to be the last time. The literal last time. This big tall man with an impressive white beard, bright blue eyes that stare right into your soul, a scintillating wit, and a deep rolling singing voice, he's going to be gone, completely and forever.

    #Cancer #stroke #LungCancer #braincancer #Grief #Death #Family

    3 people are talking about this

    The Last Gift I Carry With Me After Losing My Sister

    It was a time cherished by our family. Something that had been part of us for as long as I could remember. Garden City, South Carolina – Fourth of July. Some of my earliest memories of childhood centered around this special place, and special time that our family spent together each and every year. My mom has a huge family. When all is said and done, there are over 50 of us – grandparents, cousins, aunts, uncles, grandchildren, great-grandchildren – like I said – a huge family. Each year, we would come together, from all parts of the country, and every imaginable walk of life, and spend the week together as a family, enjoying a week of vacation together. Only as I grew older did I realize how unique this experience was, and how few families did this year after year, for 30+ years. It was a time that shaped me as a young man, and bonded us together as a family, reminding us that there were few things that were more important. Yet this year was different, and we knew that after this, it would never be the same. It had been a hard year, especially the past six months. During that year, my daughter and nephew had been born. It was an exciting time of celebration in our family that quickly became tragic. In December, following these births, we received the devastating news that my sister had brain cancer. It was a diagnosis that rocked our world and overshadowed the new births in our family. As we walked this new and difficult path, nothing prepared us for the news we received six months later, in late June, that my sister was rushed to the hospital and was not doing well. Two days later, huddled around her bed, we said goodbye. My little sister, only 16 months younger than me, the person I always remember having with me, was gone. Words cannot describe the grief we felt. The loss was deep, and now, even 20 years later, it is still deeply felt. Until that day, I could not remember a day without her in my life, and now, everything was changed. The next week after her passing was the annual trip to the beach, and it was the first time I realized how different life would be going forward. Everything about that week changed. Yes, we still came together as a family and treasured the time together. We still ate, talked, and had fun together, but there was a quiet undercurrent, a void, an emptiness that was not there before. It became the first of many events, that while joyful, was mixed with loss and sadness. It began the process of simultaneous joy and sorrow that I would experience with each new life event. It was the first of many things that showed me that no matter how much time passed, I would always be saying goodbye to her. I would always have that part of me that was missing and would forever feel the loss of her presence with each new life event and milestone: the first Christmas, the first Thanksgiving, the first New Year’s Eve, birthdays, trips, exciting news, graduations, life events – all would be changed. As our children grew, she would not be there. When I had exciting news, like publishing my first book, she was not there to tell. For my entire life, she was always there, and now there was a void where her presence had been. Would healing ever take place? Would our hearts heal? Would that void ever be replaced? The answer was “yes” and “no.” While she would never be replaced, never physically be with us again, in some ways, she would always be with us. While I could no longer see her, over time, I began to realize, that even in this long goodbye, she was still there, in my mind, memories, and heart. Even though I lost her, in some ways, I always carried her with me, and her loss helped make me who I am today. It was not easy, and there were very dark days, and days I did not think we could make it. There are still times I hear her voice in my mind, saying something I no longer hear her say aloud. Her loss changed me, it changed our family, but it also bonded us together and showed us how special and treasured life truly is. Since that day, there have been many more losses and goodbyes, and while each has been difficult, and each has changed our family, each has shown us and reminded us to treasure those with us on the journey and helped us see what truly is important. Perhaps that is the last gift from those that have gone before gave us – a simple reminder in our loss and pain that these times will never come again, so cherish them and hold close to those you love and hold dear while you still can.

    Community Voices

    Hello everyone, I’m new to this app and I’m going through the unthinkable right now.. I am 21(in a few days) and I have a 4 yr old little boy with lvl 3 autism and recently diagnosed with a rare brain cancer called ATRT. I also have a 4 month old daughter. I was diagnosed with Borderline personality disorder at 18 and still have a hard time managing it. I’m married (pending divorce) of my narcissistic and abusive baby daddy. I just really need support and possibly dbt skills or something… please

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    Community Voices

    The grief for the loss of those who are still alive

    <p>The grief for the loss of those who are still alive</p>
    2 people are talking about this
    Community Voices

    How do I get past having a dismissive & completely unsupportive family concerning my sexual abuse?

    I found out a few days ago that my nephew has been allowing the family member who attempted to sexually assualt me when young around our newest member of the family. Luckily the mother to his baby saw sense & believed me when she told me in passing & realised my reaction so I told her the truth & she instantly wanted nothing to do with him & felt disgusted he'd had him around her baby. When she confronted him, he told her "there was no proof, so am I supposed to just not hang out with him just because she said it happened." My nephew is 8 months younger than me, my attempted abuser was 26 years older than me & I was 17 at the time. I was sexually abused at 13 & again at 14, 6 months later. My nephew knew this as I broke down & was introduced to church due to not coping well with my experiences. After I started going to church & began to try to heal I was violated again but this time I didn't freeze. But my nephew doesn't believe that happened after I moved out of the city away from my family & haven't spoken to abuser since. I have chronic health conditions & c-PTSD 10 years later, I'm heavily disabled & lost my mum 2 years ago. My mother knew about all the abuse but didn't believe me enough to help me through it. She invited him to her home & continued to do so after. I wasn't able to be with her while she fought stage 4 brain cancer as I was disabled myself. My mum had the entire family helping her through it & they kept me updated the entire time, I was there when I experienced levels of illness that allowed me to. My abuser held on to my mum while she passed, she had her entire family around her accept her youngest daughter who couldn't stay the night there because I was bedbound needing carers myself at that time, as if I pushed it at all I collasped & travelling down there was pushing it every time. I was heartbroken finding that my abuser was the one touching my mum as 5 days before I was told I was disabled due to being abused repeatedly. He was the straw that broke the camel's back, according to my neurologist who had diagnosed me with FND just 5 days before. I messaged him that night, I was way too nice, but I told him to not sit anywhere near me at the funeral & he sat right next to me in the next seat, as I was on the end with my wheelchair, nodding his head & laughing with everyone else. I didn't even grieve my mum in peace. Now I find out he's had so much contact with the next generation & my nephew allowed it knowing me. I thought he knee me better than anyone else in my family. Now I realise absolutely no cares about me in the way I do them. It hurts beyond feelings. It hurts Being & knowing where my being comes from hurts because it isn't loved by my roots. How do I move past that?

    2 people are talking about this
    Community Voices

    Unconditional love #POTS#PTSD

    In 11 days it will be 18yrs since I lost my dearest friend Val to cancer. She and I had gone through similar health issues and had both lost loved ones to cancer 2yrs previously. We were still grieving and our friendship helped us heal and then her cancer returned 3months after we met. The next 5 years we became even closer - and when she died I was holding her hand and singing her favorite hymn when she raised her eyebrow in farewell. I felt a rush of happiness for her that her suffering was over, followed by overwhelming loss. In the time that followed I was so grateful for every moment of our friendship. She loved life and laughed often and always lived her best life. She knew not to hold back emotionally in her friendships and giving everyone unconditional love - perhaps having cancer over 20 years taught her that - or being a much loved only child. She used to say God bless at the end of every phone call and once in the hospice after 2 weeks of silence - she had stopped speaking because of brain cancer - as I hugged her and turned to go, I heard those words again. It was one of the last gifts she gave me. I feel blessed indeed to have had her in my life and find comfort in wearing the amethyst ring that had been her mothers that she gave me when she was still well. I would go to her place and cook a meal and then she would do dessert - tinned fruit and vanilla icecream topped with contreau, then we would recline on her couches drinking herbal teas in compatible silence listening to Willie Nelson or John Denver. Bliss!

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