Pamela thread 5 - Bile Duct Cancer, chemo begins

Sorry about the link confusion. I asked mumsnet to change it to Thread, which they kindly did, but then the link I had initially shared stopped working.

Glad you’ve all found your way here. My goodness, what a day. It may well be the frankly massive dose of dexamethasone I’ve had today (10g!!) talking, but I feel elated. I feel a bit in pain and hugely bloated of course, but I actually feel like FINALLY we are killing this thing, we are fighting, taking up arms, flushing it out, stopping it’s insane replication, telling it to fuck right off, showing it who is in control.
I’m back at the hospital now and I received such a warm welcome I felt completely embarrassed. Everyone knows me by name (the great privilege of a private hospital) saw one of the theatre staff when I was wheeled back in and she stopped to speak and ask how things went. Then saw another who gave a big thumbs up, and then then nurses on my floor and the care assistants all came in to ask how it went. The level of genuine interest, care and attention is truly heartening.

People are good, humanity is good. Yes, not everyone, I’m not about to break out in song Julie Andrews style and schmaltz my way through this post, as we all now there are not nice people too, but I truly think they are so far in the vast minority. A huge lesson I have learned in all of this is just how generous, how caring and compassionate most people are, how strangers will go out of their way to be make your day all little bit easier, not because they have anything to gain by it. Not for any agenda or any selfish reason. Just because innately people are good and want to help. And maybe in that helping they get something too - and that’s what it’s all about.

I’m kind of laughing here as I feel like I’m brimming with all this 180 degree joy of progress and chance, whereas I was a whole different person after last night’s debacle and you had to scrape me off the floor this morning. So I’m well aware this is likely short lived once I’m feeling sick and combing my hair down the drain. But we take the good where we can and trying not to be too contrary and mixed up - but cancer does that to you. It’s the ultimate chaos. There is no control. Which is particularly bad when you are known for being an orderly and, dare I say it, quite controlling person (Kerr would nod).

So, I’m thrown into the midst of this rollercoaster, I can get off even when I feel absolutely sick. So, we continue to ride and hope that it slows down to a manageable speed and we go from there. Day by day. At night, sometimes hour by hour.

Kerr has gone off for a takeaway. I cannot stand the thought of hospital food again tonight, the quality is good but it’s a bit dry and monotonous, even if the main courses are served under a cloche. They even serve your scrambled eggs on toast under a cloche, which is a poncey step too far in my book. Maybe I’ll buy cloches for a laugh for home and present everything chef style. There, look at me, thinking of the future!! Still also flossing by the way, small acts of faith! xxx

Someone asked how many rounds I am getting. I think for me in my, unenviable, position it’s very much a play it my ear scenario. I am reasonably young which is in my favour, I was active and healthy with no family history or lifestyle factors. However it was very advanced when found. So, we do this cycle (today and next Wed) and we see what my bloods do. We hope for betterment of jaundice and then Prof B is very willing to add in immunotherapy to the mix on cycle 2, which starts exactly 2 weeks after cycle 1 finishes.
If bloods and liver function don’t improve we are on a sticky wicket and will stick with another cycle of just gem/cis without immunotherapy. Then we reassess.

So no long term definite. We pray for the cancer to shrink and for liver to improve. Worry about the mets to lungs after that. Then more options open to me if liver is happier. My biopsy is currently being sent to Germany for more specific gene testing to see if there may a rogue gene we could target - best case scenario. Takes about a month to come back. That’s the dream, but it’s a 40-50%chance. Ultimately better as a long term than playing whackamole with chemo, but chemo is amazing right now.
Hope that explains a bit better.