Pancreatic Cancer

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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 (The only real reason he won is the Electoral College which is obsolete by today's standards and needs to be shut down permanently/obsolved).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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I'm new here!

Hi, my name is JudeIz. I'm here because I am having difficulty ever since my husband of 49 yrs fell down the stairs on Christmas day 2022, while visiting our grandkids. Then 4 months later I was diagnosed with Pancreatic cancer. I sold my newly purchased house and now am back living with my younger brother. It's just too much all at once.

#MightyTogether #Anxiety #Depression #Grief

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Hello everyone

I felt insecure thinking about starting to post anything on this platform - which is probably a good reason to deliberately do so anyway.

I'm 24 and I'm here because mental health has always been an issue for me and also because I lost my dad to pancreatic cancer this year... It's comforting to read other people's experiences and to have a safe space where people are honest about their emotions and struggles.

#Anxiety #ComplexPosttraumaticStressDisorder #Grief #AdjustmentDisorder #PanicAttacks

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Therapy- how it has helped my mental health journey

Part 1 of 2 Being diagnosed with bipolar in my mid-twenties was scary enough, I was experiencing symptoms way earlier( started in high school my senior year) and I was not sure how to handle this in a positive way and tried to stay away from my negative coping skills(such as drinking and self-harm). Then one day my doctor suggested going to individual and group therapy and it has changed my life. I am a firm believer that everyone could use some sort of therapy whether it be individual or both. Below here are some of my tips that have made my therapy successful for me and being able to cope and manage bipolar and my life itself.

Individual Therapy

1.  Find someone you connect with– this is SO important to be able to open and start to heal you need to trust the person you are talking to and feel comfortable with that person. This person does not know you at first, but the outcome to me would be this person will know you (maybe even better than the people in your life). I wanted to make sure the person had my best interest; I did not want to feel like a “number being called to come into the office”.  I had an awesome therapist, she made me feel loved and really listened to what I said. She actually was the one that convinced me to check myself back into the hospital during a mania episode (had been up for 5 days) and suicidal thoughts. During our treatment she told me she was diagnosed with pancreatic cancer and passed away- it crushed me. I knew I had to find another therapist and start all over again. I did find one and then went a few times, but the connection was NOT there and I went back to the drawing board. I did find another one and we have been doing great! She challenges me and likes to see results and has helped me step outside my comfort zone. She has me do homework to make me a better person. I feel comfortable getting angry, sad, and even crying in front of her. So, please do not feel bad if it does not work with a therapist, just go find another one, you want the sessions to be helpful and successful.

2.      Be open and honest– working with a therapist can be scary at first, I always thought does this person really care? I would think if she is judging me as well, will she think I am a bad person. But I had to let that all go, I knew if I held back information or my feelings I would not start to heal. I had covered up all my wounds, now it was time for me to rip those band aids off and let the healing begin. Once, is started to do this and opened those flood gates, my healing process really started to begin. I felt more and more comfortable with my therapist and felt good. I know it can be scary but trust me the healing cannot start till you are truly being yourself.

2.      Do the work– many times my therapist would give me assignments to do and at first, I would not do them and lie and said I did. My sessions were not productive. She was trying to help me develop coping skills to be able to manage bipolar and just myself better. After realizing this, I started to do the work and the assignments, exercises and/or challenges given to me. I really have noticed a difference.

Group Therapy:

1.       Find the support group that is right for you– NAMI was introduced to me and when I first attended my first group for those living with a mental health condition, I was nervous and was quiet. I did not say anything the first time I just went ahead and listened to everyone. It was definitely an eye opener, to be able to hear other people experience what I was going through and be able to relate to them. There are so many support groups out there, you do need to do some research on them.

2       Find which platform is going to give you the best experience– now there are support groups out there that are virtual as well. Some people that are suffering with social anxiety this would be great for them. I have done some virtual as well and it was nice to see faces on the screen, now you do not need to show your face if you did not want to. People still talked and the facilitators were there to give advice etc.

3      Do not be afraid to speak– unlike individual therapy remember you will be in a group setting so once you feel comfortable speak out, you will be amazed how much in common you may have with someone and what their struggles are. It is awesome to get advice from so many other people than just from one person (with individual therapy) you may get a different perspective and learn new coping skills. Depending on the group they start to become like your family and there is no judgment being made. You can just let it all out.

Therapy truly has been my saving grace; I do both now and I gain a lot from both types. I truly look forward to attending and will continue for as long as I can. Do no

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Pediatric Pancreatic Cancer

I am here for my son Max.

Max is an intelligent mature, amazing little man who was diagnosed with pancreatic cancer in December 2022.

He came to me with concerns of the whites of his eyes starting to yellow. He was a jaundiced.

He was taken to the emergency room, and there were thoughts. He had hepatitis or mono, and really a wide range of things.

Less than a week later at a follow up appointment with the pediatrician, we were informed he was having organ failure, mainly his liver, and we were rushed to University of Missouri hospital.

A few days later, they’ve started using the word cancer, and he was then diagnosed with a primary neoplasm of the pancreatic head.

This never happens. His situation is so rare that there is no protocol for any treatment. There are no protocols for symptoms or anything that he’s going through whatsoever at all.

He was due to have a Whipple procedure done which at the very last minute was decided against by his medical team, due to inflammation of the portal vein from a previous endoscopic ultrasound and biopsy.

He is now receiving treatment of chemotherapy drugs, which he has had one treatment he started this week.

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