Hi all!
I really have no idea where to start - so much going through my head. I was introduced to Norbert Nubbins (a tumour in my mid body pancreatic duct) 2 weeks ago. Biopsies taken at the time were inconclusive so I had to go for a 2nd EUS (yuk!!) on Monday. Norbert was measured at 10mm on first EUS done on 10/3/25 and measured 12mm on this Monday's scan. To me that is a scary 20% growth! The doctor taking the biopsies is certain he has managed to extract at least 1 good sample this time so it is back to the waiting game. I have an MRI booked for Friday 28th to check my liver for Mets. My pain levels are not really under control and I am worried because for the last couple of weeks I have now been getting severe pain on my left side under my ribs (gallbladder long since been evicted so in my mind only my liver left there!)
My daughter gets married in July and I so desperately want to be there for that and for the birth of her future children but finding it so hard to keep my positivity up with all this uncertainty around diagnosis of type and spread. How do you all cope? I am not always a worrier - more a planner but can't make plans whilst in this stage of stasis!
My oldest son saw me in just my nightie last night and the look of horror on his face at how much weight I have lost just broke my heart. The skin is hanging off my bones and I dress to hide that. My heart breaks for my 3 children (all adults 31, 29 and 24), 2 of whom live with me at the moment and 2 of whom are going through major crises of their own at the moment. I want so desperately to support and help them as I always have done but am finding it harder and harder to concentrate on anyone or anything other than Norbert and what he could be doing to the rest of my body.
Sorry this is so long-winded but believe it or not this is the condensed down version of everything I have and want to say.
Hello DebF
Welcome to the Online community and the pancreatic cancer forum.
I am really sorry to hear that you have had a diagnosis of cancer and remember what a difficult time it was when I had my own diagnosis. It sounds like Norbert Nubbins is causing trouble and I hope that you can soon get the pain under control. I hope that your MRI goes ok today.
I know when I was first undergoing testing for my endometrial cancer, it was hard at times to keep positive. Once I knew what I was dealing with and had a treatment plan in place- things did start to feel a bit more under control. Until then I felt a range of emotions- scared, angry, sad, numb- its all normal.
It sounds like you have family around that will want to support you and that will help. It is hard though with children- even grown up ones and I know myself I found it difficult at times to talk to my family as I did not want to worry them. It was also upsetting for them when I looked particularly unwell.
I also remember that it was hard to focus on much more than the cancer for a while- whatever was going on around me. I would hope that once you have had this MRI and have the provisional stage/grade/treatment plan then things will be a bit more settled. Once you know what is going to happen and when with treatment then it will feel easier. At the moment everything may feel in limbo.
How lovely that your daughter is getting married in July and it will help that there is something to look forward to when you are going through any treatment.
You have a lot to deal with at the moment and may I suggest that you give the Support Line a call, if you feel like talking it all through would help. They are lovely on there and it is available from 8am-8pm daily.
I hope that your MRI goes ok today and that you have your results back quickly. Hopefully then you will be able to talk to your consultant about a treatment plan and get things underway. In the meantime, we are here if you need us.
Jane
