Cancer

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    Community Voices

    Reflection

    <p>Reflection</p>
    5 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is bunny. I'm here because I struggle with anxiety, depression, and PTSD stemming from medical trauma (cancer) I experienced as a teenager. I often feel alone in my struggles so I’m excited to explore this community :)
    #MightyTogether #Anxiety #Depression #PTSD #cancersurvivor

    12 people are talking about this
    Community Voices

    just saying hello

    I joined this site a month or so ago, I think, but I haven't been very active (here or in general!)

    I've been struggling since summer 2020 with unexplained symptoms, which naturally are pretty non-specific, and a lot of unhelpful tests.

    I was diagnosed in Jan 2021 with a rare form of cancer (goblet cell adenocarcinoma of the appendix) and I was incredibly lucky to be treated by one of the top specialists in the country. I had surgery in March '21 to remove all the cancer (said to be fully successful) and receive a treatment called HIPEC which should have killed off any microscopic cancer growths. I then went through a relatively brief course of adjuvant systemic chemotherapy (thought to lower the likelihood of recurrence, which is high in this disease even with optimal treatment).

    I have been declared "NED" (no evidence of disease) since then, through multiple imaging scans--CT of chest/abdomen/pelvis every 3 months!--and bloodwork (this is not conclusive; the only conclusive way to determine if I have a recurrence would be exploratory surgery, and it's Not Done).

    The problem? I'm not better. The symptoms that sent me to the doctor in the summer of 2020 and got progressively worse are still here. Some of them are still getting worse. Some of them have invited friends.

    The oncologists say it doesn't sound like cancer or lasting effects from treatment (which was brief in relation to many patients'). Most of the other doctors I see say it must be a lasting effect from cancer treatment, or that it's depression and anxiety. My psychiatrist says it's not depression or anxiety!

    Living every day with the uncertainty and the pain of not knowing what is going on with my body and WHY and what will happen next is torture. I already struggle with feeling like I'm not in control of a lot of things (and honestly, many of us aren't) but this is just one more huge thing I have no control over. It has no name. No usual course, no treatment, no prognosis. I might wake up tomorrow and be back to how I used to be. I might wake up tomorrow and be paralyzed. I don't know.

    I DO have some lasting effects from the cancer treatment--mostly issues resulting from the major abdominal surgery--but I feel like I could deal with those so much more easily if I didn't have all these other symptoms that I'm told are not related weighing me down and holding me back.

    And whenever these doctors mention that it's anxiety, I wonder, what exactly do they mean by that? Should I NOT be anxious about the fact that my body is falling apart and no medical professional can explain why? Should I NOT be anxious and upset that my symptoms are being dismissed and written off, just as they were in 2020, and I ended up having cancer? To me it seems like anxiety and concern are pretty warranted and not pathological.

    And, of course, I was told the same thing in 2020--maybe you're just anxious, or you're depressed, or the medications you're taking for anxiety and depression are causing these issues. It's the same song and dance now, and I feel like I'm back to square one after my journey through cancer hell.

    It seems so unlikely that a rare cancer at a fairly advanced stage was discovered incidentally, but that may have been exactly what happened, in my case--either that or this IS all related to cancer, but no oncologist seems to know how or why, even the ones who specialize in it!

    2 people are talking about this
    Community Voices

    Words
    a poem

    <p>Words<br>a poem</p>
    14 people are talking about this
    Community Voices

    <p></p>
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    Community Voices

    Relax

    <p>Relax</p>
    19 people are talking about this
    Community Voices

    6 Questions People With Disabilities Should Ask Before Getting a Dog

    For people with disabilities, getting a dog can be a life-changing experience. In addition to company and love, caring for a dog can get you out of your own head and off the couch at times when you wouldn’t or couldn’t otherwise. Owning a dog is a great way to meet new people and a great excuse to get out in the world (we’re talking pets here, not service dogs). But that doesn’t make dog “parenting” easy, cheap, or something you should get into without fully thinking through all aspects of the choice. For disabled people, getting a dog is even more of an undertaking! If you have disabilities, before getting a dog, ask yourself these 6 crucial questions: 1. Can you afford it? (money) Dogs are expensive… and that’s if they’re healthy. (Ask me about my dog Kismet and her two hip surgeries! Food is expensive (ask me about my other dog Arrow and the prescription food she has to eat now because her butt got too chonky!). Toys and grooming and everything else are, you guessed it, expensive. One thing some people leave out is travel: can you afford to board a dog, or take it with you? (Boarding dogs costs more than you think it will!) Are you willing to stay home if things don’t work out?  You should also consider breed restrictions in your area: even if your dog is a mutt, if they’re primarily what’s considered to be a “dangerous” breed, you may pay more in rent or even lose out on housing options. There are definitely ways to get by on less money! This isn’t to say that no person with disabilities can get a dog unless they have thousands to spare. But it really does add up, even spread over a long period of time …Except for when it isn’t. Emergency vet visits will happen. Your dog might need hip surgery, like mine, or get cancer, like my friend’s dog. How much money do you have/are you willing to spend? Realistically, can you swing a surprise thousand-dollar vet bill? People with disabilities should understand more than the average person that getting a dog who’s in good health now doesn’t mean things will stay that way. 2. Can you afford it? (pain/health) I put pain after money because, shitty as it is, the former can influence the latter. The more money you have, the worse your pain can be, because you can buy toys and equipment and afford to pay someone to walk the dogs when you’re hurting too bad. It’s not just money, though: if you have family members or a partner, or even helpful neighbors, they serve the same purpose. They can be sort of a release valve for when things are just too bad for you to take care of anybody but yourself. If it really is just you without support, look in the mirror and really think about whether your disabilities fit with getting a dog. Are you comfortable making a commitment to walk a dog at least every other day for the next ten+ years? Even when you feel awful? Do you have the spoons to devote to taking care of another living creature? Even on bad days? 3. Can you accept that dogs have innate personalities you can’t train out of them? I got both my dogs as puppies and trained them the same way: the older one ended up smart as a whip, devious, a leader, a little bossy. She can even do a bunch of tricks! The younger one is dumb and sweet and wants to be everybody’s friend and is happy to be a follower. She can sit. And sometimes stay.  (There is one trick I’ve been working on for her entire life that she has yet to figure out, and she’s 9 now.) They’re both crate-trained and better behaved than a lot of dogs I know, but no matter what I do or how hard I try to train it out of her, Kismet will bark at someone that comes to the door every damn time. So I ask you: are you ready to deal with behaviors that fall within the normal range of dog behavior, even if those are unwanted behaviors? As a friend who lives in a big city and got a puppy last year said, “Your dog has its own personality and tendencies. Bringing a puppy home doesn’t mean you’ll be able to fully “customize” a dog’s personality. You cannot program the dog. You can be a friend to dog, and caretaker to dog, but the dog is his own being.  And you will never be completely in control of this other sentient being, no matter how good your training is.” Can you handle that? 4. Can a dog fit into your day-to-day routine and living situation? Is there a place in your world for the dog to be? People with disabilities getting a dog should know beforehand what to expect, especially if choosing a puppy or a large breed with a lot of energy – don’t be like the couple I know from high school who got a Great Dane puppy in a two-bedroom apartment – but it’s important for everybody to ask. Do you have kids or roommates? How often do you travel for work? Do you have a yard, or are you OK to stand outside with them multiple times a day while they go to the bathroom? How stable is your housing? What will you do if your housing situation changes unexpectedly? Is there someone who can take care of the dog temporarily if you are hospitalized or too unwell to care for the dog? What if you die? If a future partner is allergic to dogs, or you have a baby, or you move and it’s hard to find an apartment that lets you have a dog, what will you do? Ask yourself, under what circumstances would you relinquish this animal? If you realize that your dog is not thriving in your care, would you be able to shelve your feelings and rehome it? No matter how much you love your dog, if they have needs you can’t meet, can you find it in you to give the dog the life it deserves? 5. Are you getting the right dog for you and your individual needs? Breeds and individuals have such different requirements: there’s a dog to match any lifestyle and activity level, but not all owners consider this. The difference between a puppy of a large, energetic, wilful breed and an older medium-sized dog is absolutely massive. It’s important for people with disabilities getting a dog to be aware of both size and potential behavioral issues. How are you getting your dog? I asked a friend who runs a rescue organization what new owners should ask themselves, and she replied: “Am I obtaining a dog ethically? Does this purchase or adoption align with my values? Am I educated on issues around dog welfare in my community? Is this dog already spayed/neutered, and do I have a plan to do that?” If you’re getting a puppy from a rescue, do you realize and are OK with the fact that you truly have no idea or guarantee what it will grow into? The “breed” on the card is nothing but a well-intentioned guess. On the flip side, purebred dogs are still dogs and can have characteristics you don’t want. They aren’t insurance against the wrong choice. My dogs sure look different now than I thought they would! Have you considered an older dog? Older dogs are actually perfect for people with disabilities! Because they’re: Already house trained Already spayed/neutered, has all their shots Full-grown, so you know what size you’re getting Past the “constant zoomies, mischief and infinite energy” puppy days Puppies are very cute but in addition to everything above, at rescues, they go fast. Expanding your search to older dogs gives you way more options: odds are that an older dog sitting in a shelter near you would be a perfect fit for your life and needs. 6.  Are you dedicated to being a good owner? Do you understand what a dog needs from you? How much do you know about dog training? Are you willing to learn more? How much patience do you have? How much time do you have to devote to training and petting your pup? If you’ve got a puppy, do you realize that it will wake you up at 5 a.m. and chew on the furniture legs and tear around the house full of zoomies and energy for literally years? Everything you do with a puppy has ramifications later on. If you don’t train them well, the next 10 years aren’t going to be much fun for either of you. Speaking of… puppies turn into dogs, and dogs turn into old dogs. Are you ready for that, emotionally and financially? Still in? Hot diggity dog! This story might give you the impression that dog ownership is hard. That’s because it is! But if you know what you’re getting into, a dog can be an incredibly helpful, rewarding aspect of your life in so many ways. Through some really tough and lonely times, mine have kept me company and laughing. And taking care of them sometimes got me moving, even walking, on days when otherwise I would have been on the couch. So ask yourself these questions… and then go check out a local shelter! (If you’re in central Texas, Austin Pets Alive is an amazing group. That’s where I got Kismet!) All photos by Ken from KenWalksDogs (who is great if you are in the Austin area and need a dog-walker!) except puppy pix or where otherwise noted.

    Community Voices

    Filter your thoughts

    <p>Filter your thoughts</p>
    25 people are talking about this
    Anne
    Anne @anne78
    contributor

    Should I Use the Word 'Cancer' When Asking About Someone's Diagnosis?

    I don’t blame anyone for not wanting to say certain words or steer clear of certain topics. These are my personal feelings about talking about illness — which also change periodically depending on my own ability to cope. The other day, someone wrote to me about a scene in a TV show and mentioned that it was about “you know… the… you know… can*er.” They tried to censor uncomfortable words sometimes to prevent me from getting upset. But first of all, that wasn’t really censoring because I know exactly what they mean — if I was going to be triggered, that would have the same effect as using the word “cancer.” Secondly, after years of being in the cancer world as a caregiver multiple times as well as being a person with other illnesses myself, I am not scared of words anymore. On the contrary, I often want to scream them loudly to anyone who will listen. In fact, I wish that my own family had not been so scared of certain words because then they might have been able to have more effective conversations with me that would have helped me prepare for life and not feel shame about my illnesses. I personally find that using full, uncensored words for illnesses and not beating around the bush makes things a lot simpler. This has not always been well received, though. When I tell people who ask me how I’m doing, “We’re doing all right, but things are hard with my mother’s cancer at the moment,” they are often taken aback and don’t know how to respond. I don’t mind that. Sometimes when people say something a little scary to me, I also need a few moments to process and figure out something appropriate to say back. What I do mind a little bit, though, is that people may be scared to continue talking to me or possibly to even keep in touch because they might be scared to talk about cancer or may worry that I mention it too much. They may not want to say the word “cancer,” so they often timidly ask, “Is your mom… you know… still not feeling well?” or “Your mom is feeling OK now, right?” Honestly, sometimes I want to respond “No, she has cancer, and she will always have cancer. But hopefully next week, she will feel a little better than she did this week”. I don’t want to skirt around the word “cancer” — I want to say it until it doesn’t bother me or the people around me anymore. Not using the word “cancer” makes me feel like I’m lying and it gives it so much more power than it needs to have. I always think of this in terms of Voldemort from “Harry Potter:” “He Who Must Not Be Named.” Sometimes in conversations, I feel like the other person might be about to mention the illness — but then may remember that it “must not be named” because it is so “bad.” Then find another way to say “cancer.” However, in “Harry Potter,” the characters realized that not naming Voldemort gave him more power. I feel like it’s the exact same way with not naming my mother’s cancer. “Cancer” can be an extremely loaded term. It can have so many emotions attached to it for each person it touches — and it is kind of like Voldemort in some ways. Until cancer suddenly affected almost my whole family, I wouldn’t know how to respond to the word “cancer” either, but now I see that this skittishness contributed to my overall anxiety. I felt like I had to stop saying “cancer” and keep my mother’s illness a secret. I am still triggered by the word “cancer.” If I see a video or a post or a scene in a movie, and there is a cancer storyline, I will have a breakdown and need to turn it off more often than not. But I’m not angry at anyone for saying “cancer” out loud — I am glad they do. Those are just my reactions, and I am aware of them and do not dismiss them. I’d rather have to go and hide for a few hours than not have any cancer storylines at all. It’s not just cancer, though. Many physical and mental health conditions are still spoken about in hushed terms. I still can’t talk openly and honestly about most of my illnesses with family or friends. I hope I will be able to one day, and people won’t feel the need to censor medical terms anymore. Telling the truth and explaining conditions using science and medical language is empowering. I want to tell people they don’t need to be scared of condition names. They are just words — important words. They can help us communicate how we feel and why we feel it. I feel like saying health condition names is necessary. I will always respect someone who tells me they do not want to talk about a certain illness because it’s triggering. I understand that, and if that’s what makes you feel comfortable, please let me know. But when someone talks to me or wants to know how I’m doing, I’d love for them to just say the word “cancer” and let me say it out loud too.