Pancreatic cancer newby

[Elizabeth67]

Hi. I’m new here. Still learning. The last 10 months has been the biggest learning experience of my life. Diagnosed last May with pancreatic cancer. Had chemo and major surgery (Whipple procedure). When I was diagnosed I wanted to live. When I was going through treatment I wanted to die! Now I take each day as it arrives. Some days are good, some not so good. I tell people my cancer journey has two silver linings: I’m now down to the weight I’ve been trying to achieve for 25 years! and I’ve had a long break from full time work 😊. 

I’ve finished treatment for the time being. Now just on regular bloods and scan monitoring. The aim is to reach the 5 year survival statistic by getting stronger (physically and mentally) eating well and doing the things I’ve wanted to do for years but never have. 
Before I was diagnosed I didn’t think much about cancer - it’s something that happens to other people. After diagnosis, I slowly realised that most people with no cancer experience tend to think the same.  Whist educating myself, I’ve also realised  many others know very little; not just about cancer ‘the clinical disease’ but about how it affects every aspect of the lives of those who are diagnosed, and their loved ones. I’ve read some of your stories and I’m humbled. Stay strong. 

[kj]

Hi Elizabeth67

It’s great you were able to have a Whipple,hopefully as time passes you will have many more good days than not so good ones ,that is the way after Whipple ,one day at a time is a good mantra, surgery gives you a  chance,it is a very challenging recovery that takes time,hard work,and dietary challenges.

Best wishes for your recovery and the goals you have set.

kj

[MiracleSeeker]

Hope you keep being so positive and achieve more good days than bad. Got everything crossed for you

[kristel70]

hi my name is Kristel, I am also new at this.  Just had whipple procedure and while I am currently told I do not need to have chemo, I am petrified that maybe I should have it anyway, but honestly I am too sick right now.  I am responding to you because I can really relate to what you said about wanting to live before cancer and wanting to die after whipple.  I have gastroperiasis and the whole eating thing is a nightmare.  I am not sure I should be the one writing to anyone because I feel so negative and depressed.  Like you I am inspired by the people who are positive and holding onto hope.  I wish I had more of that.  just wanted you to know I could relate to what you said, thank you

[Elizabeth67]

Hello Kristel70. 
Thanks for acknowledging my post. 
It sounds like your surgery was very recent. I feel your agony. The pain, discomfort and challenges right now will feel like life will never ever be the same again. Hang in there. One thing I’ve learned while traversing my recovery is that, the day after tomorrow is usually better than the day before yesterday. Small steps, one day at a time. I’m not yet fully recovered, but I’m a long way from where I was 10 months ago - becoming a little stronger each week. But some weeks ago, after a follow up scan to monitor my pancreatic condition, results showed that I may now be facing a diagnosis of breast cancer. It may hopefully come to nothing, but, in the meantime, while I’m feeling well, I decided to take a once in a lifetime trip on The Ghan train, through Central Australia. This was a BIG goal I’ve had for years. It was physically quite hard, but worth every discomfort.  My ‘small’ goal now is to build enough physical strength to walk 4 klm to raise a few dollars for pancreatic cancer research in the Put Your Foot Down For Pancreatic Cancer Walk in August. Ten months ago my goal was to simply reach the bathroom from bed. 
Stay positive Kristel. I know it’s hard right now. I wish you all the best so you can get through it and experience better days ahead. You are in my thoughts. 
Elizabeth67. 

[kristel70]

hi Elizabeth67, wow you are an inspiration.  Can I just ask you about the nausea after your whipple procedure? Did you have gastroperiasis ( delayed emptying) did you have trouble eating? how much weight did you lose after whipple.  How long did the eating problems go on for and how did you deal with it?? some people are saying 12 months or more.... I just cannot imagine coping with this.  Food is a chore.  I eat the same every day, simple basic and quick to slap together.  too sick to cook, I eat like a robot.

Kristel

[Elizabeth67]

Hi Kristel. Sure, I’ll try to help answer your questions. Everyone is different of course but some of your symptoms sound similar to what I experienced. My medical team didn’t use the term gastroperiasis but I certainly experienced delayed emptying, still do. I had nausea and frequent vomiting In the early days after surgery. This was due to food taking a long time to move out of my stomach. With no duodenum, food then isn’t digested well enough before entering the small intestine. Frequently it just came back the same way it went in (🤢).  Small meals of food that is easy to digest can help. I became a whizz at scrambled eggs made with a little butter and milk, not overdone so the consistency is nice and soft. Blended soups are also a favourite. I’d make a pot full and freeze for other days. 
Have you been prescribed any digestive enzyme medication?

 I lost about 20 kg in total (10kg through 3 months of chemo before surgery, then another 10 after surgery). I’ve replaced 5 kg since January this year. I’m eating much better now, mostly everything I ate before (except red meat, I can’t digest well - and if I eat out in a restaurant I choose a lighter meal and eat before 6pm). My digestive enzyme medication is my new best friend 😊. 
Everyone is different but I started to improve after about 4 months. It can be a slow process but improvement will happen without you noticing. 
I found a very useful article on nutrition after Whipples. I’ll search it out and send you the link in another post. 
Do you have any support around you?

Elizabeth67

[Elizabeth67]

Hi Kristel. Here is a link to information I found useful. I hope it may help you and I hope the link works through this medium. If not, try typing in the address. 
Keep in touch and let me know how you go. 

https://www.nyp.org/documents/nutrition/resources/Client-Ed-Whipple-Surgery-Nutrition-Therapy.pdf

[kristel70]

thank you elizabeth, I am on pancreatic enzymes.  I think I am doing most of what that article says.  I'm still needing the metaclopramide to stop the nausea but have been advised to try and change to domperidon instead which has less side effects,  the nausea is my big porblem because it stops me eating.  I appreciate your time and energy in responding to my questions, regards Kristel