Hello Everyone,

I’m new to this forum but was I was diagnosed with inoperable bile duct cancer in March 2023.

By way of an introduction to me, I’ve written a few lines below and apologise now if it sounds in any way self-indulgent.  We are all of us in the rocky boats so I’m definitely not special.  The reason for joining is because I don’t talk about this stuff very often - especially with other people who are also suffering with their own personal version of cancer purgatory.

In my case, I was told I had about 12 months to live.  I’ve kept myself to myself for the past year and my world has shrunk.  My wife, family and friends of course have been wonderful and, after 6 cycles of a combined chemo and immuno therapy regime last summer, I was thrilled that all but one of my tumours (the largest) have now. seemingly, vanished. The worrisome two on lymph nodes, while small, were situated right on the slip roads to the lymphatic super highway network. They had with clear ‘access all areas’ passes. The fact that they had gone was my oncologist’s cue to speak to surgeons about removing the last one.  After reviewing a CT and PET scan they still declined to go ahead citing complications (which sounded very vague and dismissive). 

After 6 months of immunotherapy it was clear that this, on its own, just couldn’t do the heavy lifting.  The one remaining tumour (in the bile duct) grew by an alarming 50%.

So, in February I restarted chemo.  I’m 4 cycles (8 sessions) into this second round.  An interim CT scan showed the tumour was the same size so, I hope, its aggressive growth has been arrested. I’m now hoping that new scans in 8 weeks’ time will show that the chemo has been successfully going about its work.

If it has reduced in size then the plan is to revisit the surgeons.  I sincerely hope they might change their minds.  I live in hope  - as of course do all those with cancer and, importantly, their friends and families do too.

In the meantime, I’m still coming to terms with living with it and struggling to find ways to be useful and constructive with whatever life I have remaining.  For the past 12 months I’ve not worked.  And after 35 years of working, I’m finding it difficult to adjust to a new definition of me.  

I described my state of mind to my wife the other day that having cancer was like a winding road full of blind bends.  I can never see too far ahead. My horizon is much closer than it’s ever been before so making me very nervous to plan anything.  The threat of the unexpected lies around every corner. I feel paralysed by the lack of any certainty.  For the moment, I try to live in the here and now but I need to be busy again.  I need to have a new purpose.

I sincerely wish you all every blessing and kindness.  I hope to hear from you.