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There are so many different stereotypes we all carry around about the physical appearance and abilities of people with cancer (from popular culture or our own limited experience). These stereotypes are dangerous because they can stall policy & progress and keep us collectively ignorant of the real needs of the cancer community.
- •Hairless or HairySome chemos and radiation make you bald. Certain treatments actually make you lose all hair (nose, eyelashes, pubes, etc.). It's important to know that not all treatments cause you to lose your hair. Also, not all cancer is treated with chemo or radiation (sometimes surgery and/or alternative treatments or no treatment are used). There are lots of people walking around in cancer treatment who have tons of hair! The amount of hair you have has nothing to do with how good or bad your prognosis is.
- •Skinny or FatSome people suffer from nausea or loss of appetite as a side effect of cancer and/or certain treatments, making eating tough. There are many more options nowadays to combat these side effects with drugs. There are also some types of cancer, treatments and medications for side effects that include weight gain as a side effect. When taste or digestive abilities are affected patients have less nutritional options. When energy level and/or mobility is affected exercise can be limited or impossible.
- •Unable to do anything or doing everythingAs with any chronic illness, you can't tell how able and energetic a person is just by looking at them or even by knowing their diagnosis. Cancer and treatment can be very unpredictable. During certain phases of radiation or chemo exhaustion is common and often compounds over time. Sometimes we're prescribed steroids or other medications that can give us periods of high activity. Some of us with active cancer lead "normal" busy lives and you might never be able to tell we're not well.
Joining the party
- •Kermit the FrogPerennially the straight-man in a wacky bunch of weirdos and somehow always called to leadership and responsible for holding everyone together to get shit done.
- •Lisa SimpsonPainfully nerdy, deliciously well-read, and driven by justice. We often ask questions that we know the answer to, but we really just want other people to reflect on the questions because they are either unkind or unintelligent.
- •Carol from Last Man on EarthAlways able to make the most of the end of the world and no matter how many terrible things are happening we survive with a smile and great style. Can find the good in every single person and works to help everyone get along.
I was first diagnosed on 8/8/08 so in honor of my 8th cancerversary...
- 1.How do you expect me to remember what organs I still have left in there?!Lots of surgeries means lots of confusion about this one.
- 2.Well, I guess you'd say it's a lot like that scaly skin disease on Game of Thrones.
- 3.I'm feeling so much better now that I get horrible diarrhea every day.I only have those lie on the bed in the dark in the fetal position pains an hour or so every day - instead of 4-6 hours every few days.
No matter what your politics are, this is a really big freaking deal! Thanks to all the women who came before to help make this possible! Lets just pause on this for a minute.
- •Hillary Clinton as the first female major party candidate!
- •Candidate who has been in the public eye and under scrutiny probably more than anyone else in history and still makes it to be the nominee.
- •An actual women and mother and grandmother who also has achieved more professionally as a public servant than most candidates in history.
- •1st presidential spouse to run for office
Today is National Cancer Survivors Day. I have cancer for the 4th time in almost 9 years so let's celebrate me (hooray!) and everyone else surviving (double hooray!) by educating the rest of you "normals" a bit
- •Survivor forever!The day you are diagnosed with cancer you become a cancer survivor - forever until you're dead. People like me who currently have cancer are still survivors.
- •Medical research doesn't focus much on survivors yetCancer survivors are living longer (hooray!) & we need to better understand and learn from survivorship from many research points of view (medical, psychological, sociological, economical, policy, etc.). Cancer survivors are key subjects because of what they might tell us about the human experience overall. New research holds keys about financial toxicity, improving treatment and care, unlocking the secrets to human resilience, understanding human relationships through hardship, etc.
- •Most doctors and hospitals don't focus much on survivors yetThere is a real feeling that once your active treatment is done, you aren't very interesting anymore. There is very little talk when you are actively making cancer decisions about the long-term or permanent side-effects after treatment is over. For many of us these include things like infertility, neuropathy, swelling, incontinence, joint problems, hair loss, PTSD, depression, and weight management challenges. Quality of life after cancer needs to be a medical priority and topic of discussion!
This is just what happened today. I have cancer for the 4th time and have CTs every 2 months these days so the monotony of this process inspired this list. I'm really positive and happy about everything almost all of the time, so this is my therapy for the day. Hospital administrators take note.
- •This thingThis is a really bootleg wall decoration.
- •This, again?!Even though I'm at this hospital all the time the process acts like they've never met me. For example, they insist that my primary care doctor isn't "in their computer system" so every single time I come in for any test or have an appointment or chemo or have to register for a test they insist that they will now put my doctor and all their contact info into the system and it will always show up in the future. This has happened 1-3 times per week for the past year and a half. It's hilarious now.
- •It's hard to remember what organs I still have and which ones have been operated on whenWas that my small or large bowel? What was that thing called - omentum? Which ovary was 2008 and which was 2011? Seriously. One of these days I'll make a cheat sheet, but for now the thought is too depressing and I suffer through guessing every single time. Nothing ever fits in the space provided.
We have an awesome variety of great food but these are the things I miss the most when I'm away!
- •A Coney and a Baby GreekI like mine with cheese minus onions. This means a hot dog on a bun with shredded cheese on top and then chili without beans and mustard. On the side you get the perfect tiny Greek salad with creamy dressing and warm pita bread. It's amazing!
- •PerogiesWe have the best and you can buy them classic or with more adventurous flavors!
- •Shawarma with garlic sauceHonestly I could put that garlic sauce on anything! In the Detroit metro area you are never more than 5 miles from some great middle eastern food.
Almost every day someone wastes my limited time, energy and patience cornering me with "easy" cancer cures. They are sure I wouldn't still be sick if I just did this thing they read about on FB, did themselves (even though we don't have the same disease or they aren't even sick), saw a film about, heard about from their cousin's boss, etc..
- •Sometimes I don't want to talk about or think about cancer.I never mind someone asking me how I'm doing or checking in and sometimes this leads to a long conversation about it when I'm comfortable and know you care about me, but sometimes I'm not prepared (especially in public) to engage with you about my life and my death. Often people who corner me about cures just want a chance to hear themselves talk and this can be really hurtful when you are talking about something so personal to me.
- •Thanks, but been there done thatYour idea is probably either something I already love and utilize that I know a lot more about than you do, something I've already tried and it either didn't work or it hurt me, something that doesn't apply to me at all, or something really stupid. There have been some real doozies over the years. The worst is when I know someone who died (maybe earlier than they would have otherwise) doing whatever "cure" you like. This is more common the longer I survive and it crushes me.
- •I'm already working my ass off with my current treatment planI only have a limited number of spoons (Google spoon theory). I have to protect myself from wasting "spoons" on things that don't provide a clear benefit. I often enjoy trying new treatments, nutrition, and exercise, but all of these things require spoons. It's hard to explain how exhausting my daily life can be and how adding in another "little thing" means I have to remove something else from my life (like time with loved ones or positive impact). Life's too short!
I'm Amanda and I'm 36 and I've got ovarian cancer for the 4th time in almost 8 years. I think this makes me a professional cancer survivor. I'm so happy to be #notdeadyet and going to keep that going as long as I can!
- •To be able to do anything (literally anything else) in the same day I workout.I personally love Orange Theory Fitness which is an intense interval training group workout (and I'm super impressed with myself that I can hack it)! I can only go twice a week though because otherwise I'd never actually do much else or see anyone. When I say it wipes me out - I have to sit in the car for like 3 songs afterwards before I can even drive the mile home and then I have to work on getting up enough energy to shower. That's my day!
- •A healthy diet that won't make me sick to appear already prepared for me.Eating can be a challenge on the meds that I have to take. Since my meds and what my colon can handle changes, it's tough to keep up with what food works for me at any given time. The energy that it takes to purchase and prep the right food often leaves me no energy for anything else. This makes eating my full-time job some days.
- •My paperwork to magically organize itself.I technically have a file cabinet and some colored folders, but some of the actual stuff that needs to be filed is sitting on the floor near the cabinet with some clothes on top from the last suitcase I didn't really unpack yet. Who knows where the rest of the paperwork is but some is also in electronic medical file hell across many different hospitals (which makes it very messy too). All this overwhelmes me - so I just ignore it!