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  1. Forums

    1. News from Pancreatic Cancer UK

      Read the latest updates from Pancreatic Cancer UK and how you can help us.

    2. Patient Experience Forum

      A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

    3. Family, friends and carers

      A forum for family, friends and carers' of pancreatic cancer patients.

    4. Treatment, symptoms & side effects

      A forum to focus on treatment related issues, symptoms and side effects from treatment.

    5. Advanced pancreatic cancer

      A forum for advanced pancreatic cancer issues.

    6. General chat

      A forum for any other issues around pancreatic cancer.

    7. After pancreatic cancer – coping with loss

      A place to support each other after a loved one has died, whether they were a partner, friend or family member. Grief can affect people differently, so please be kind and respect others' views on how they choose to cope.

  • Recent Posts

    • katew
      I am so sorry for your loss. This story is a mirror image of my mum. She is still battling. She wasn’t believed , has been ignored, left in A&E for 8 hours then told there was nothing wrong when in fact her tummy was blocked, abused in hospital and tomorrow she is going home from the hospice to see this out. In 3 months she has had one oncology appointment and now she is too ill for chemo. I feel devastated and angry!!
    • Skippy
      Similar to my brother 74 after his Whipple op. He took a lot longer than average for his digestion system to kick in. He was on intravenous liquid food bags, two weeks, and delays before his drain could be removed. It was about 3 months, (with creon) which he thought "2 per meal was sufficient" on raising it to 5 and he became more normal in the bowl dept which made him much more confident. He was troubled with the daily gas. I know of quite few who take ompreprazle which help digestion. I would discuss the ompreprazle with Consultant.  His digestion worked much better bearing in mind the long surgery, and ate small but often plentiful foods. His appetite was good. His discomfort then being his discomfort of the tummy scarring- (when digestion eventually got going). 
    • Andrew C
      Hi there. I had similar problems to yourselves. It is a year and 3 weeks since I had whipple,  I was told before that sometimes the stomach doesn't kick back in straight away, doctors didn't know why this was, mine took 8 months to really start functioning  I suffered with real pain after any meal and had to lay down for an hour, then I was fine. Now it happens now and again but everything seems OK. I take croon like yourself  but a lot more. Depending on size of meal, can take 8 with evening meal and 2 with coffee 5 with snack, I was told in hospital that you can't overdose on them. Without them I struggle to keep weight on  I also take 2 omeprazole a day. I am sure your symptoms will subside like mine. It will take longer.  Hope this helps.
    • Jbaxter55
      I have been surprised by the gut issues I have now, following Whipples Operation for early stage Pancreatic Cancer in June this year. As a nurse I have quite a good understanding of the physiology of the body but did not expect the level of change to my body after this surgery. I suffer excessive wind, diarrhoea or very unstable bowel function. I take Creon capsules every time I eat, but do not find them that helpful ( 1-3, 35,000 unit capsules). Does anyone have any advice for me?
    • Nadia - Support Team
      Pancreatic cancer impacts every area of life, including mental and emotional wellbeing. Whether you’ve been diagnosed with pancreatic cancer yourself, or you’re supporting someone you love, come along to our free webinar. You’ll meet two of our Specialist Nurses, Nicci and Lisa, who help people affected by pancreatic cancer every day on our Support Line.   We’ll talk through some of the different emotional responses you can expect and how to get the right support – from talking to friends and family, to reaching out to us and other organisations, and thinking about when you might need more specialist help. There will be time for questions also.   https://www.pancreaticcancer.org.uk/support-for-you/webinars/12-december-2023/  
    • Nadia - Support Team
      Awesome, thank you so much @Lozski😀  
    • Lozski
    • Andrew C
      Hi Luke.  I had Whipple oct 31st 2022. A year on i am now doing fine, I've had two scans since and both showing clear at the moment. Not sure whether you are having whipple, from my experience the first couple of weeks post surgery are not easy, but slowly you are able to move and walk with the help of the nurses and doctors. I was due to come out of hospital after two weeks but started being sick during week two so had to stay while this stopped. This was due to my stomach not working properly, i was told before hand that this is the case with some people, this is the only problem i have had, it probably took 6 months to really get going again, i just had to lay down for about an hour after eating then the discomfort would go. Its much better now. I take Creon with each meal, the amount varies. It takes upwards of 6 months to fully recover, i had 6 months of chemo afterwards, the cancer had spread to my lymph modes, but so far this has sorted that. You will probably have tubes coming out of your stomach area, this is only temporary. To start with it is difficult but with positivity and the help of the NHS you will get there. I am a plumber and am now back doing work on my terms. I get tired quicker than before, but i am still smiling.   All the best.  
    • Nadia - Support Team
      Afternoon all   Over the coming months, we'll be reviewing our support services and exploring the most impactful ways to reach more people. To make sure we make informed, patient-led decisions, we want to understand the experiences and opinions of pancreatic cancer patients and their families.    We want to hear from those who have used the charity’s support services and those who have never been in contact with us.    There are two ways you can take part.    Insight Research Interviews: Share your experiences in a 1-hour, one-on-one interview.    Survey: Look out for our short survey in November or December, which will help us validate findings and explore key topics.  We will have a limit on the number of interviews we can carry out so if you don’t hear from us to take part in an interview, do keep an eye out for the surveys.     More info can be found here
    • Nadia - Support Team
      Luke, you may be aware you can contact our specialist nurses on our free support line for some guidance. The free call number is 0808 801 007 with phone lines open from 9am-4pm or submit an email for a response via this contact form https://www.pancreaticcancer.org.uk/support-for-you/contact-a-nurse/.     This must feel like an anxious and overwhelming time so i do hope you will feel able to reach out.   Support Team Pancreatic Cancer UK
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