Pancreatic Cancer

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Bones become My Home

I’m eight years old, covered by a pillow on my head. The loud hum of my grandmother drying her hair fills the room. I give up and settle for Regis and Kathie playing softly on the TV. I’m not paying attention, except for her—my grandmother, sitting on a white, cold metal stool, without skipping a beat. She leans in for a hug, saying, “Up, up and away,” before closing the door behind her. I’m left in the comfort of her bed. This house has bones.

Will this memory stay etched in my mind forever? I pray so. Will it be cancer? Pancreatic cancer, the “silent killer.” I’ll argue that it’s the loudest sound I’ve ever been forced to know.

Those same arms that reached out to me—in swimming lessons, rocky currents, and rollerblade twirls—have become the bones I hold. The ones I lead to the kitchen, stand up from the floor, and guiding her towards the door. Those firm, certain steps I’ve always loved to know have become soft bones. They will always be my home.

“You are my Universe. You are my World. You are my Everything,” she says. She is my home. Her bones—they become my home.

“Go, go, go,” is the only direction I’ve known her to have. Now, there’s nowhere to go. No meeting, no home. Time is slipping away from me, so is she. Roosters yell to a morning, now we let her sleep the day away. What do you all have to say? Let me remind you of all the names.

Pancreatic cancer - steals time but gives you strength. Holiday spirit turns into Holiday Ache. The scent I knew so well faded into an Evanscent, it vanishes quickly but is delicate along the way.

Help! I get by with a little help from her bones.

#PancreaticCancer #Cancer #Grief

*To have bones - When a person’s flesh, strength, or energy fades, the bones become the last structure left.

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A gift, A thief.

People usually say… “So much can change in a year” OK. What about in months.

My grandmother’s cancer journey has changed my relationship with time. Might as well change my relationship status to “It’s complicated.”

Let’s start with what Cancer is to me. Cancer is “getting everything in order - so… that…x,y,z.” Actually, it’s more like you’re reading the alphabet from finish to start. Right? So you can go backwards and maybe sound out letters you missed because you were going too fast, you don’t. That’s the thing… how do you go from September 21st. Walking three miles in forty-five minutes to the next day… “Cancer doesn’t happen to me. It’s not in our DNA. It happens to others, other families. “ to Holy Shit. Holy - something. We need some spiritual interference for this. To “She is so strong. So are you.”

They measure a life and give you a Hail Mary. You start saying Hail Marys.

I’ve had rules… rules if my grandmother ever lost her ability to - and the only thing I can remember from the fuzziness that my brain has become is.. Chapstick. She wants chapstick. It’s important. Chapstick becomes the only thing I can do.

I’ve learned the true meaning of capacity. How you show up, fully will look different every day. I really like the quote that says “On the days you have forty-percent and you gave forty-percent - you gave one-hundred percent.” Someone’s percent will look different than mine, that’s OK. Cancer is showing up as you can. As your body lets you. As your heart wants to.

Cancer is you can do chemo - Sorry, you can’t. Cancer goes from doctor appointments to hospital stays. Cancer is going home, and staying there. Cancer is. It’s watching your loved ones do everything for someone who - was healthy, looked good, looked young. (Wait. . You’re 68?!) It’s watching someone wake up in the middle of the night to give her medication, adjust the pillow, adjust the bed. Walk her to the bathroom, stop her from walking because she thinks she’s walking to an appointment. It’s… going along with what she says. Watching my grandmother fold a blanket over, over and over. In two month’s time. Time is a gift but also a thief. Two months time. I’ve seen how hand holding is the only thing you can hold on to. I’ve seen how couches become beds. You start inflating beds and wish you could inflate birthday balloons one more time. I’ve seen how, you’re suppose to just welcome everyone. Welcome, everyone… she’s asleep.

OK now. What cancer really looks like: Holding grudges becomes holding her hand. Watching my aunt change colonoscopy bags. Weren’t those bags… Nordstrom bags in two months time? Draining bags. They told her to drain her bank accounts in two months time. It’s watching my mom, watching her convince her mom that she’s her daughter. My mom has always been the most resilient person I know. I watch her open up her house to people who, she’s known her whole life, yet, they don’t know “Where she’s been this whole time.” Here. I watch her giving her mom medication, wasn’t I just watching her do a puzzle? A thousand pieces puzzle. Now, I’ll be helping her, she will be helping me, pick up the pieces of our lives for the rest of our lives, we’ll piece together, yet it won’t look right. What do you do when a math problem answer doesn’t seem right, you start over: We won’t be able to start over, we will have to start from where we are. They say start from where you are with what you have. We have each other and that’s where we are but remember when I had my center, and Alicia did too? Me, I’m her center. Does this mean I’ll be looking for my footing for the rest of my life? Probably. I’ll definitely be looking for her (my grandmother) , in water, surrounded by seals, smelling like dirty salt water, with the sun hitting my face.The only thing I’ll have is the smell of seal infested salt waters, when wasn’t I just smelling *daisy sour cream, devils food donuts and hamburgers for breakfast? It’s the only place. I already know that. This must be the place. It is. I said I’d be here. Hypothetically, Now, in the future, literally. She (my grandmother) won’t be.

Now more than ever before, I know why they say “Grief is just Love with nowhere to go.” Wait, she’s still here! Grief doesn’t start until the end, or does it? Grief exists because Love existed. Opposites? No, the same thing. Side by side, just like everyone is at my grandmother’s side. Now, not then. If she’s strong now? What was she then? Let me remind you of what you said.

Cancer is. We have no choice, “Putting a fire under it.” Never thought that would become - “Let me put this pillow under you, are you more comfortable like this? Are you uncomfortable, no she’s in pain. It’s, strangers to, using nicknames we’ve known our entire lives. It’s Oh no, I am going to cry. Can’t cry. Too late, your cousin thought of you and bought you vegan cheese.

A gift, A theif.
Gratitude for this entire experience is a prayer.

Cancer is, saying everything but not saying anything. Literally.

Like Alicia said. This is the easy part, so what’s the hard part? Don’t tell me.

But I’ll tell you what my heaven looks like, she said: it’s pictures of you.

#Cancer #PancreaticCancer #Grief

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#Anxiety # paranoia

Good morning everyone!! Saw my sister yesterday; she has stage 4 pancreatic cancer. Seeing her was like a slice of heaven!! The only thing is - i talked just about the entire time mostly about myself. Feel unfortunate abt the fact that i did that to her. But she said she was there to listen.

When something happens to her - if i outlive her it will be very sad for me to see her go. I am very close to her. I even miss her now even though i saw her just yesterday. We went out to lunch and had a very nice time.

I will text her this morning/ it is too early/ and ask her how she is doing and ask her about her kids- grandchild/ I asked her how she was when I saw her, but she said very little about herself.

Well, that is what I wanted to share this morning. It is very early here. Missing my sister already 😢😔. Just saw her yesterday rarely - see her.

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Being positive

I have a lot to be happy abt- my sisters - 4 - are living- eldest God willing will be 84 this year. I can text them( 3 of them) in the morning if I wish and greet them w a good day/ so, is my brother living- my sisters typically answer w uplifting thoughts & comments. Feel fortunate to have my siblings.

I have a sister w stage 4 pancreatic cancer. We were close growing up. She has her family- 4 adult children and 1 grandchild- and many friends- but still few fortune that i still have my sister in my life. The Lord is good! 🙏🙏❤️😍🥰

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#Anxiety #Sleep deprivation

Well, I rested. Could not sleep. Hope I can get through the day. Having my coffee— happy time for me. My sister w stage 4 pancreatic cancer says this morning time w her coffee is her gratitude coffee time.
I really enjoy my coffee ☕️ 😍

Want to wash the blinds today in the bedroom. Listen to church again possibly and watch the Super Bowl tonight!!

Just my husband and me; we are typically alone. 😞. This can get very lonely. But I am not going to worry about that today.. I am going to have a good day!!

Have fabulous today everyone!! Best..

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Saying Hi and my feelings on the Election etc.

Hi all! I am so glad I got invited to join the group via email and I am happy to be here. My real name is Marshall D.W.H. I am currently 33 years old I have ADHD, Autism Spectrum Disorder (ASD), and Mild depression and anxiety. I take medications for ADHD depression and anxiety, I've had all these conditions since the age of 6 years old. ASD has no cure but can be treated in a variety of ways for me I talk to a Social worker and receive therapy as needed as I am pretty stable. I have been living with my parents for the last decade of my life and while life has had its ups and downs most recently two years ago my dad died in May 2022 from Stage 3 Pancreatic Cancer. So far all is well and I take it one day at a time.

Normally I don’t vent on the internet, but I really to vent about this. I will admit I am not happy about the results of the 2024 election, I was looking forward to seeing the orange-haired idiot go to jail, you know who I am talking about...sigh. So I am really bummed about that not happening. (The only real reason he won is the Electoral College which is obsolete by today's standards and needs to be shut down permanently/obsolved). I was really hoping after a week once all the votes from all states were counted that maybe Kamala would be the actual winner, but that will most likely not happen so that really sucks.

However, despite this, I am in the middle of school/college at my local community college which is Illinois Valley Community College (IVCC) in Oglesby IL. Right now I'm majoring in early childhood education (ECE) so I can receive my Associate of Applied Science degree (AAS) as I already have an Associate of Arts degree (AA). I am working on my short-term goal of becoming a Preschool Teacher, as I want to see if being a teacher is the right fit for me, and if nothing else I'll be an assistant teacher.

Being with the kids in the classroom is where I want to be. My longer-term goal for education is to be a special education teacher (We don't have enough male role models in ECE or the later grades in schools). Plus I know I'll be a great role model.

Plus in the much farther future, I want to open a Bike shop/sporting goods store, as I want to be an entrepreneur/businessman and fix bikes professionally. I currently fix, build, and generally work on bikes more as a hobby/side hustle. Currently, I am restoring a 1965 Schwinn Deluxe Stingray coaster brake model bike, and once I am done restoring it, and put it up for sale I should make some good money. Anways that's enough for now, but I am praying for America and that we get through these hard times.

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Faking it, until I make it

I awoke this morning after yet another night on the sofa with Binks, my wee dog. I have chronic insomnia and so much pain I can’t climb the stairs. I was in luck last night, the start of a meteor shower, so many shooting stars, who needs fireworks? A brief glimpse the Northern Lights and a cup of tea at 3 o clock.
I’ve just kissed my husband, Paul before he goes to work. Every morning I make his sandwich, yes he could do it himself and happily would, but, it’s my little way of paying all his kindness back.
Ever since I had my Covid vaccine 3 years ago I have a shingles type rash in my genital area. It’s so, so painful, it’s like having pants full of fire ants.

It’s been a very, very rough 4 month’s, I’ve fallen down the stairs 4 times, bruised myself very badly, I’ve had Covid, 2 very dear, very fit friends died, far too soon. One a super fit, marathon running woman, days from her pension, had a back ache, went to the doctor and was told she had stage 4 pancreatic cancer, she lived just 11 days after diagnosis. The other a lovely, gentle bear of a man died from heart failure. One 65, the other just 60. It made me reflect that despite this godawful disease of mixed connective tissue disease, fibro, Behçet’s and rheumatoid arthritis, I’m still here. I’m so in tune with my body and its numerous creaks and groans I’d notice change. I miss them and will plant them roses in my rose garden. I’ve planted too many over 3 years.
Today I’m taking Binks my puppy out to the forest, it’s literally just our my door. I use my wheelchair, she runs ahead. I hope to sew butterfly wings for my granddaughter Emma and make a unicorn hobby horse.
I’m grateful for every moment of every day, could it be better? Of course, but, it’s still pretty wonderful.

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So disappointed

#Fibromyalgia I have never been more tempted to scream “I AM NOT A DRUG SEEKER!!” than I was yesterday. My fibro has progressed in the past couple of years and I feel like I don’t have triggers or flare-ups just constant pain. And my PCP says that we’ve tried everything there is to try and he isn’t allowed to give me any other meds for the pain. I have so many more symptoms (as we all do) and I had a CT scan to make sure my pancreatic cancer didn’t come back. It hasn’t (yay!) but my results said that I had severe degenerative changes in my spine. Wouldn’t anyone want to check that out? Of course a couple days before I saw a dr to ask about it, I fell down a small slope and injured the tendons in my rotator cuff, I’ve been falling a lot lately. So when I went to the doctor she totally invalidated my symptoms and questions.

According to her everyone’s spine does this when they get older. Fine, but could you at least listen to me? Do all my symptoms added together show that I have something else? After telling me my concerns did not warrant concern, we went over my symptoms, and she invalidated each one. After asking about them one at a time, and me saying yes and describing it, she would say they would look for something else. She did end up saying, “I would characterize it as degenerative disc disease”, but she later said there was nothing new to add to my list and didn’t put it in my file.

Me- Look I am an informed patient and always look for options to take away my pain that has stolen so much of my life. Now that I hurt my shoulder, the pain on top of my fibro is really bad but I still need to work and take care of my daughter. Can you help me?
Her- I can’t give you anything, and even though I’ll talk to your PCP, I doubt he can either.
Me- (in my head) I AM NOT A DRUGE SEEKER! I AM IN PAIN!!

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Sad

I just went to my neighbors house to bum a cigarette and found out she was just diagnosed with pancreatic cancer. She's trying to stay positive and keep her sense of humor. She's the only neighbor I'm friends with here. I don't like getting close to neighbors because in the past I always lost them. When I moved here I swore I wouldn't get close to anyone but she insisted on being my friend. She had me over for Thanksgiving dinner and she cooked me ham and scalloped potatoes for Christmas dinner. She's super nice. I'm really hoping the doctor will have good news for her when she sees him in 2 weeks.

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I’m new here!

Hi, my name is PBerthiaume. My diagnosis was in 2011. I have been “cancer free” since treatments in 2011. My brain fog has not seemed to have resolved itself. my memory has not been the same since. Also, I lost my husband to pancreatic cancer in May 2022.

#MightyTogether

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