As many of you know, I was really trying to get on the EPOCH trial as it evaluates SIRT plus chemo vs chemo alone. I was disqualified on Tuesday as a pre-trial CT scan showed more progression.
I was dissatisfied with the scan as they chose to cannulate a tiny vein in my hand so they had to slow down the contrast and the scan was quite blurry as a result.
However, my oncologist reviewed the scan and the radiologist report in detail and determined that my cancer is progressing more than before and thus my chemo is failing to delay progression. That means that the risks outweigh the benefits for me and my chemo regime has been stopped.
In the pro column, my rash may finally clear up.
In the background, we have decided to pursue SIRT treatment. It has to be funded privately because the NHS are still evaluating the results of previous trials and haven’t green-lighted funding for it.
The new chemo I have been offered is called Lonsurf and it is my last chemo option. I feel less confident that it will have any effect for me as my previous two lines have failed, but I am still going to accept treatment for as long as it is offered to me. I’m going to eat those pills so hard.
In a discussion with my oncologist, we have decided that SIRT may be beneficial as I don’t have any disease outside of my liver and it is a liver targeted treatment.
They go in through an artery in the groin and map the arteries in your liver to make sure none of them leech into other organs (sorry for my terminology – I’m not sure of all of the medical jargon). Then two weeks later you go back and they blast micro beads of radiation into the liver tumours via blood supply which can really give them a punch where it hurts.
It’s not effective for everyone, but it is a treatment that may benefit me. At this point, I’d like to throw the kitchen sink at my disease so that I can have more moments like this:
Chris suggested I start a GoFundMe on Tuesday evening after our clinic appointment, so I did. I was hoping to be part-funded and not expecting much. But by Wednesday night, I had enough crowd-funding for treatment, which is so far beyond what I had expected to raise and so much quicker, too.
I am so lucky that I’ve included so many people on my “journey” (still dislike that word) through blogging, social media, fellow bowelies and charity work because it felt like you all wrapped me in a big giant hug in my time of need and for that, I’ll be eternally grateful.
I don’t want to die. I’m not okay with the idea because I so desperately want to stay here with my family and friends. I cherish every moment now and I’m so thankful for all of the small pleasures: a pretty rainbow, sun streaming through the window, plants springing to life again, the smell of a wood fire, loud leggings, my comfy bed and the way the cats greet me when I come home. I know that death is inevitable and trying it’s best to come for me but I struggle with the idea because I still feel so alive.
Photo credit: Karen Gardner, BBC Wiltshire
I actually threw a “still alive” party to say thank you to all of my non-virtual friends for their support. I wore a Hawaiian dress and served virgin piña coladas and stayed up late. But I don’t know what the etiquette is when you have 700+ to whom you owe the hope you are now filled with. I don’t think there’s enough rum.
Even if SIRT doesn’t work and my cancer grows, I will still have the warm and fuzzy feeling that this generosity has stirred up in me. And that in itself is precious, too.
Much love and thank you for reading.