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    1. News from Pancreatic Cancer UK

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

      339
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    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).

      4.8k
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    3. Family, friends and carers

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

      12.5k
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    4. Treatment, symptoms & side effects

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

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    5. Advanced pancreatic cancer

      A forum for advanced pancreatic cancer issues.

      6.2k
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    6. General chat

      A forum for any other issues around pancreatic cancer.

      2.2k
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    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.

      823
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  • Recent Posts

    • Tip Top
      Thank you Rog, and I am so sorry for your loss. It is so hard to live without someone who has been your partner and soulmate for your entire adult life. Numb is a good way to describe it, and so difficult to come to terms with. The tears have come for me this week, out of the blue, but then again suddenly disappear.    Like you say, there is very little that friends can do to help. People ask all the time how I’m doing and I honestly don’t know what to say. I’m not ok but if I tell them how I’m really feeling, what can they say? So I function on a surface level with a smile and pleasantries. Lovely friends keep thinking of ways to treat me, but I don’t want to feel better, I want to feel really sad. I realise that sound both ungrateful and bonkers but that’s how it is for me at the moment. 
    • sanita
      My 74 year old mum has been diagnosed with stage 4 PC in its head and lesions in liver. We were advised prognosis is 3-6months without treatment and 8-9 months with chemo... We had oncology appointment today, they are offering a standard chemo treatment Gemcitabine or she can also take part in trail PRIMUS 001 - FOLFOX-A is a newer combination of chemotherapy. Could you share your/your loved one's experiences of chemo? Has anyone taken part in this trial? Thank you
    • rogs
      I lost my beloved wife Margaret to Pancreatic Cancer just over 2 years ago.  We had been 'an item', as they say, for over 50 years, and married for 49 of those years. We were very close.  I had been nursing her for about 8 months, and the end was peaceful, thankfully.   But I didn't cry very much at the time - or since.   I was - and still am - mostly just numb. It's difficult to describe what I feel like to other folk ... there are essentially no words.   I did feel guilty for a while if I laughed at a joke, or had a 'chatty' conversation with someone. I think most people I know will think I'm doing 'OK'. But I'm empty inside, and I suspect  that many folk in the same position will understand that.   What is true is that for both you and I - and sadly many others - this new world we inhabit is very strange.  It takes some navigating, and there's very little other people can do to help there. It's a very personal and individual experience. There are no 'rules' as such.   Not crying much is certainly not very high up the list of being very important, in my experience.             
    • Rolland61
      Hello, i was reading your post and i can see that you have been very active for doing all necessary tests to rule out  malignancy related to your symptoms. nowadays technology of CT scan and MRI with MRCP are very good tools to find pancreatic problems including cancers.  In case of early cancers ,MRI and CT may miss some of them but even then, secondary sign [such as pancreatic or bile duct dilation] would be most propably shown on both scans. MRCP is very accurate to diagnose strictures and dilated ducts which are present most of the cases which are causing GI symptoms. It is very rear that Mri and CT combination is unable to detect this kind of  abnormality in the pancreas. It is true that  EUS is the most accurate tool to detect small mass but when i look your known risk factors and symptoms (based on your post) , your odds to have pancreatic cancer is near 0.  If your GI doctor recommends additional tests as a next step, surely in that case you should follow his advise. His responsibility has been to collect all necessary background information and risk factors related to your case  and to make decision based on that. Sorry for my english, it is not my mother lanquage.  Take care of yourself and allow yourself to relax a little bit.
    • Tip Top
      I lost my partner of 40 years three weeks ago. He was my soulmate, we did everything together. It was expected but happened quite quickly in the end. Pancreatic cancer was a tough journey but he had a good death in the hospice with his family around him. We have had the funeral, which was lovely, and my family have been around, although they will leave soon and I will be on my own.    I loved my partner with all my heart. We did everything together and the thought of living without him is intolerable. What I cannot understand though, is that I don’t seem to be grieving. I have cried but not much, and day to day I appear to be coping fine. I am getting things done, joking with people and socialising. It all seems very unreal. I should be a mess, why am I not collapsed in a heap? This makes me feel terrible, like I am not honouring my partner. I just don’t understand it and feel so guilty. I wish I could cry uncontrollably, that would make me feel much better. 
    • sanita
      Hello, was reading your post, some time have passed, was wondering how you are doing?
    • sanita
      Hi, we are waiting for my mum's biopsy results but everything is pointing out to PC. My mum has been in a severe pain since October, now prescribed 10mg Morphine Sulfate x 2 day, and 10mg Oramorph to be taken as 5ml max 6 times in 24hr. This medicine is not helping, she is in a significant pain, she can only leave home to get more medicine.  Can you share your experiences and medicines that helped with pain? Has anyone tried nerve block - A celiac plexus block? Thinking possibly to see if we can pay for it privately, to get it asap. Thank you
    • Luke1971
      Hi, Luke. I hope you're getting some answers. I had the Whipple procedure last summer, and six months of FOLFIRINOX chemotherapy which is just coming to an end. I can only describe it all as unpleasant but - in my experience - completely manageable. I've been taking Creon with every meal for eight months. I've only just joined this forum, so apologies that it's a late reply. If you're still looking for answers, do reply to this and I can maybe go into a bit more depth for you.
    • Luke1971
      Hello, all. First post. I was diagnosed with ampullary cancer last year, had the Whipple procedure in June and began chemotherapy in August. Because the cells in my (removed) lymph nodes were of pancreatic rather than biliary type, I've been treated pretty much as if I had pancreatic cancer. After six months of what I'm guessing many of you are very familiar with, this week I'll be having my 12th and final cycle of the FOLFIRINOX regimen. After the customary 10-14 days of feeling yuck, then I'm hoping to gently rebuild my strength and eventually get back to normal. I know these things are different for everyone, but I've been warned that the fatigue can take 3-6 months to wear off completely. Someone told me that the oxaliplatin alone can stay in your system for 3 months. I'd love to hear from anyone who's been through FOLFIRINOX - how long did the fatigue stick around for? When were you able to resume a normal, working life? Thank you.
    • Nadia - Support Team
      Morning all!   Just a reminder about this free event coming up, let me know if you have any questions. Hope to see some of you there  
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