Terminal Cancer

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    Community Voices

    I hate Cancer!!!!!!

    My sister is dying from cancer. It has progressed to the point the the hospital sent her home with hospice to die comfortably in her home. I'm anger and sad and scared. How do I do this life without my big sister? 💔 who will listen when I am down and make no sense? Who will advise me and tell me its going to be okay? She is too young to die she is only 59.Her older years have been stolen from her. I'm unbelievably broken hearted! I don't want her to go yet I had to give her my permission 😫 and tell her not to worry about me. She told me so calmly over the phone that she wasn't going to get any better and wouldn't be talking to my again. What choice did I have but to tell her it was okay. #Cancer #Depression #Loss #LiverCancer TerminalCancer

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    Anna Krentz

    Why Does This Book About Cystic Fibrosis Assume I'm Not Reading It?

    The sentence struck me, a person with cystic fibrosis reading a history of cystic fibrosis. “As you and I sit here,” the author wrote, “breathing with normal lungs…” Such a casual assumption, from a writer who acknowledges her own lack of experience with the disease. People with cystic fibrosis (CF) don’t have normal lungs, that’s true. Thanks to our body’s issues with thick mucus, our lungs too easily foster bacteria, setting off progressive cycles of infection, inflammation, and cumulative airway damage. CF destroyed my own to the extent of needing a double-lung transplant. The author describes all this with a science writer’s accuracy. But “you and I,” with healthy lungs. “I,” the reader. By default, I’m grouped with “you,” who doesn’t have CF, not “them,” who do. Am I, the person born without healthy lungs, assumed not to be reading this book? Do you, the author, assume I wouldn’t be interested in my own community’s history? That I wouldn’t be capable, or willing, to grapple with a 500+ page book of (popular) medical/scientific history? Yes, the life expectancy for people with cystic fibrosis was once under 10 years old. And yes, young children do not flock to such tomes of serious non-fiction. But when the cystic fibrosis life expectancy in North America was last 10 years old, it was around 1970. Today, in the United States, it’s over 40; in Canada, more than 50. A significant majority of all people with CF today are adults. We read books. Many of us even read academic ones. I have a graduate education. I personally know a Ph.D. with CF who has a high-ranking post at a major museum, and another pursuing his Ph.D. in microbiology. Heck, one of the major scientific researchers in cystic fibrosis, Paul M. Quinton, has the illness himself! So why, I ask again, are those of us without normal lungs excluded from this book’s explicit audience? I don’t assume intentional marginalization from the author, which is why I have chosen not to say her name. The issue is not to undermine an individual’s good intentions, nor to leap to the defensive over an ableist slip of language, which can happen even to the most conscientious of us. Rather, this example highlights a tendency hard to escape, as a budding historian of chronic illness living with her own. As I dug further into the book, heightened awareness deepened my disappointment. Across the chapters detailing medical treatment, scientific innovation, and fundraising efforts for cystic fibrosis, from the 1930s to the present day, I found the people with CF themselves regulated to the margins. Doctors, researchers, parents, benefactors: dozens of these figures were characterized, from personalities to life histories. People with CF? Almost all children, mentioned here and there as motivations for the more active figures, those with normal lungs. On occasion, we get a fleeting glance of other narratives — the unnamed 18-year-old with CF needing a doctor’s letter for exemption from conscription to Vietnam, the anonymous CF adult experimenting with nebulizing IV antibiotics at home, an innovation that was quickly pursued by the medical establishment. These are the characters I wanted, the histories I hoped a book about the past would tell. Cystic fibrosis, sadly but undeniably, has killed way too many people too young, and the further in the past, the younger the toll. But even the youngest of these patients were also people, with their own perceptions, quirks, and ambitions. Even sick 10-year-olds have agency, to say nothing of those individuals with CF marrying and pursuing degrees and performing their own piano compositions even in the 1950s. To focus, as this author does, on one family’s “typical” story and to treat every other lived experience of CF in the manner of plot devices, is the kind of erasure that people with disabilities and chronic illness have had to face too often, even in our own histories. One fact that I’ve uncovered, in my own research of historical lived experiences of CF, is that in the mid-century it was fairly common not even to tell children they had it. At the time, this was often the case across medical realms — terminal cancer, for instance, was a diagnosis shared more often with a patient’s family than the patient. Today, though, this mindset is outdated and harmful. We need more narratives of the experience of illness, past and present, shaking off the ingrained approach of viewing the patients with an outsider’s eye. We need to hear about people negotiating the complexities of lives physically impaired and/or socially disabled. Ideally, we’ll see more histories of illness and disability spearheaded by those who’ve experienced them. But what we need, most of all, are narratives about chronic illnesses that assume people with those illnesses themselves actually are reading them.

    Community Voices

    Slivers instead of a heart

    <p>Slivers instead of a heart</p>
    5 people are talking about this

    Newly Diagnosed Ehlers-Danlos Syndrome Survival Guide

    Dear Newly Diagnosed Ehlers-Danlos syndrome (EDS) Warrior, Welcome to my world of invisible (and sometimes visible) rare connective tissue disorders. You are not alone! You may be relieved to finally get a diagnosis, or absolutely horrified to find out that there’s something major at the genetic level causing most of your problems. You may be in shock and disbelief. On the other hand, you may be overjoyed to finally have answers to all your medical mysteries. You will likely go through a range of emotions over the next couple of days, weeks, and months — even years! It can take a while for things to sink in and for anxiety and worry to settle down after a diagnosis. I found that there were many stages and levels to processing my EDS diagnosis. That’s why I took the time to write a survival guide. When I got my diagnosis, there was no program for hope and healing for me to follow. So, I made my own. You can too! Right now, you may feel broken, defective, and damaged. You may start listing your limitations and mourning the loss of dreams that may now have to go unrealized. However, I am here to testify that you can not only survive with EDS, but also thrive. There are smart strategies, tools, and game plans you can adopt to make your life the best it can be. By adapting to your health condition, you can and will make it! While at first, you may cringe from being named a person with EDS, I believe there will come a day that you are proud to be a “surthriver” with EDS. You might mentally go through a list of family, friends, and acquaintances and weigh the pros and cons of letting them know about your new diagnosis. Do they need to know? You may want to let people know, but you don’t want to see the pitying looks in their eyes – or have to answer questions that you don’t have the answer to (and neither does science yet). You will experience an entire range of emotions from sadness, to anger, to rage, to despair, to hopelessness, and back again to hope. At least you know what’s going on with you! You’re feeling emotions and that’s OK! Your mind might start racing. Most likely, you will have many thoughts about what EDS means for you and your future. It can make you dizzy even if you aren’t normally affected by vertigo with EDS and craniocervical instability. You will probably connect all the dots of your past. This is all normal to be going through. Processing this new reality can be a zigzag line or like stepping up a spiral staircase. You might go around and around in your mind with new concerns, worries, and fears. But each time you see your EDS from a higher perspective, and even zigzag lines move forward. I want to remind you that you are still the same person. Even though you have a label and a diagnosis, you didn’t change or go away. You may just have to build up a new version of yourself that is strong, wise, and resilient. You will have to use the diagnosis of EDS, to help you make good decisions for your health and modify your life to fit your circumstances. You will have to make room in your life for being you. After all, you just got confirmation that you are indeed unique! Your life may not go according to plan now, but that’s OK. Life never does anyway, whether you have EDS or not. You can make new plans. There’s no right way or wrong way to deal with EDS since all of us “zebras” are all so different. However, there are well-known contraindications to keep in mind that could be potentially harmful. Research these and know why they could be detrimental but don’t let it terrify you. A little healthy fear is good, terror is not. You may discover that many of us (EDSers) have been injured in advanced yoga poses, chiropractor’s offices, and childbirth. This you will want to safeguard yourself against unnecessary harm by being educated and having a knowledgeable medical team who supports and understands EDS. By identifying the potential threats to your health, you can spare yourself pain, injury, and medical trauma by knowing which medications to avoid like fluoroquinolone antibiotics that can specifically cause more damage to connective tissues. Go as fast or as slow learning this vital information. Be cautious. Be careful. Be smart. Respect your body. And still live your life! You won’t be able to learn everything right away. Take breaks if you get overwhelmed. As long as you continue to put one foot in front of the other (or wheel yourself day to day), you’re doing great! EDS is different for everyone, so there’s no need for comparisons to be made, no benchmarks, no set-in-stone goals. Don’t beat yourself up mentally by judging yourself harshly. We didn’t cause this; this was the hand of cards we were dealt. There is the opportunity to create your own personal goals that are attainable and reachable for your version/type of EDS. Even though you have EDS, there is still room for growth and goals. If you haven’t found out yet, there are 14 types of EDS and counting as medical research discovers new variations each year. This means that there are many of us out there, just like you. As you survive EDS, you’ll find strength and courage you never knew you had. This is your chance to go from ordinary to extraordinary. From the ashes of your old life, a new life will be born, and you will build it, bit-by-mindful-bit. You can go from surviving to thriving by overcoming fears and moving forward embracing a new life with EDS because you are stronger than you think. You are alive, you are a fighter, and if you are reading this, you are an EDS warrior! It’s OK to give yourself the necessary time to grieve. You might feel some (or a lot) of self-pity. I just caution you not to fall into the dark pit of self-pity. Stay away from the edge by using/writing “Gratitude Lists.” I often suggest journaling thankfulness as a powerful way to shift a tired, weary, worried, worn-out brain into better thoughts and energy. We have a life to preserve and cherish even if all we can do is listen to music and capture one precious moment of joy in our week. Yes, you will likely feel the loss of all that “could have been,” but the debris of those dreams will be the soil for the seeds of innovation. You can get more creative as you make your own solutions to the problems you face. You may have days of terrible, horrific pain. You may have days when you can’t get out of bed because of EDS. There may be days when you can’t cope with being around people. There may be days when your body won’t move the way it used to, or the way you want it to, and you are embarrassed. You may have many trips to the Emergency Department and visits, or hospital stays you didn’t expect. You may have more medical bills than are fair. You may have to give up some sports and adopt new/safer ones. You may have days of being overwhelmed by medical jargon. You may have days of inconclusive tests. You may have days where the test results are scary. You may have days of frustration with doctors or medical professionals who don’t know about EDS or its comorbidities and complexities. But remember, these are just days. We have other days to balance out the hard ones. You might come across that one empathetic physician who shows you that they do care about what you are going through. Cherish them. Send them a “Thank You” card. You may get frustrated with having to have so much help, or no help at all. You may want to yell at people closest to you, or just cry and mope all day. Your state can range from severe anxiety to deep depression. You will have to process your new reality in the best way you can. It’s not what you have that defines you, it’s what you do with what you have. You still have the power of choice. While EDS may be a life sentence, it is not a death sentence. You still can breathe, and your heart is still beating. Your spirit will be as strong as your will to live. You may have to get therapy and a physical therapist to help you keep going. Don’t feel down about this, that’s what they are for. It’s their job. Their purpose in life is to help people like us. We are one of the reasons they have jobs and meaning in life! See things this way. EDS can take away many things that you once enjoyed, but it can’t take away the important things. You will need to remind yourself of all that is good in your life. Your strength can become a light of hope for others. Seeing you survive, might encourage another younger family member who may have inherited this condition too. We can lead a good life by example. We can give them hope that there is happiness with EDS. FYI: When you have accepted your diagnosis of EDS, in my experience, you will suffer less. Sometimes we suffer over our suffering, which just adds more pain to our problems. You will have to be kind to yourself and offer yourself lots of compassion for your struggles, both mentally and physically. You will have to be gentle with yourself and give yourself the right to practice self-care over taking care of others. Realize that you are not broken. You might be different, but you are not junk. Realize that you are a warrior, a fighter, and an EDS survivor. With EDS, you can learn to fight and not get hurt. This is done by strategizing, planning, and using wisdom. You can live with EDS, not because you have to, but because you want to. You can learn to stand up every day, face EDS, say “I am an EDS survivor and thriver!” Congratulations, you are an EDS warrior. Keep calm, carry on, and most importantly, connect with others! Remember that you are not alone!

    Community Voices

    Is it okay to be here?

    I'm not a daily caregiver of someone who has cancer. I am however the sister of someone who has terminal cancer. The doctors have told her they cannot save her life they can only prolong it some. I have virtually no friends. The reason I am not her caregiver is because she is far away from me. Otherwise I would be there daily. I am broken-hearted and she isn't even gone yet. I'm at a loss and and so much frustration. I'm helpless and I'm sad. I'm also a sufferer of major depression and bipolar disorder as well as anxiety. So the worry and the sadness is triggering other illnesses. I was hoping to find some support here. But like I said I'm not a caregiver so I don't quite fit the group. Is it okay for me to be here? Is there a cancer group on here for families I don't know about? Please let me know. #Cancer

    7 people are talking about this
    Community Voices

    Check in with me.. really struggling. Gram in hospital

    My gram is in the hospital. She had a stroke. She has to do rehab then move into assisted living. We will have to empty her apartment and storage garage. Then move her in the assisted living. She also is battling vulvar cancer. Can’t operate because of her age (88) and she’s decided not to do chemotherapy because it will be extremely painful. My gram basically raised me because my parents were working. I’m so worried about her and I want to be with her as much as I can. I’m very overwhelmed. #CheckInWithMe #Hospital #Stroke #Depression #TerminalIllness #TerminalCancer #Cancer #VulvarCancer

    7 people are talking about this
    Community Voices

    It’s Been a while since I’ve been on here it may be a lot to read but I’m pouring my heart out

    I have been struggling mentally and physically on a daily basis. Things got so difficult in my life I’ve wonder if there’s light at the end of the tunnel. I’ve been suffering daily I’ve lost my godfather and grandfather months apart my godfather has suffered 7 heart attacks while in the hospital. He had a heart condition that he hid from the family on my mother’s side some of my cousins did not know that he had a heart condition. I remember the time my cousin brought out a bundle of paper and had all the condition information on it i really can’t remember exactly what it was at the time I was working as mechanic and had gotten a text message from my mother telling me my godfather had suffered a heart attack while at home he had fell onto the floor and was told he suffered a cut on his forehead. I immediately reacted without thinking I got into my car and raced to my godfathers house but he was already in the hospital. All of us prayed he’d survive the ordeal they put him into a induced hypothermia. We waited hours and hours to get news and and we did and they were saying he was doing fine his heart was beating he could breathe on his own without the ventilator and then we got news he had been suffering heart attacks back to back after resuscitation and the last heart attack took his life. I remember the cries of my godmother begging god to bring him back it broke my heart to hear her cries all of us had cried we all went to his wake and his burial it was a heart wrenching moment for me for all of us. Months later my grandfather passes away he suffered from terminal cancer but died in his sleep we believe he died from heart failure or heart attack. My grandfather was looking very thin and pale almost like a skeleton he was cold all the time he wore mitts on his hands a heavy sweater and he’d eat very little he’d sleep a lot and I saw his last picture before his death and what I described with what he wore was what he wore the day before his death the next day he passed away in his sleep. My father was overwhelmed with emotion i could see it in his eyes that he was very very saddened he didn’t cry but was devastated about the news. I was on my way to work i no longer pursued my career of being a mechanic instead i did gig jobs grubhub Uber eats etc. I woke up at 9am got dressed got everything and went out for work I get a call from my mother telling me my grandfather passed away so I head back home my parents were at a restaurant and I went there and told my father i give him my condolences and he said thank you. I sat down with my dad and we had breakfast i gave him a hug and told him “your father is in heaven now he will be taken care of “ fast forward to now I’ve deal with a broken heart for days I broke up with my girlfriend of 7 months due to her family not wanting me to be with her due to things that happened before I dated her I’ve lost my family members and girlfriend I feel depressed and miserable and sometimes empty in my heart

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    Community Voices
    Community Voices

    Euthanasia for severe mental illness? #BPD #EAS #euthanasia

    I’ve been reading and there is not a lot of information on euthanasia for people with mental illness, but the ones that appeared had personality disorders. Physiscians take under consideration somatic symptoms when deciding if a patient would be a suitable candidate for EAS. However, just as a terminal cancer can hurt and lower the life quality of a person, so can being suicidal and having emotional pain. There may be moments of happiness but that person is still sick, still in pain, and still wanting to die. I think that with careful evaluation of all possible tratment and not seeing significant betterment the person is under constant pain and should be able to terminate their pain on their own terms. I have had multiple medications and procedures to try to reduce my emotional pain and it works for a while but then it comes back worse. I tired of feeling this merry go around. I think I think cases of people with mental illness who want EAS should be taken seriously. We can’t bare the pain anymore.

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    Community Voices

    Scary scary thoughtd

    Wgat way to cope with scary thoughts about death and you would never harm yourself and don't want to die which are just awful thoughtx#
    #MentalHealth these thoughts multiplied while dearcfriend just found out she has terminal cancer plus another friend has terminal cancer#

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