It’s been a while since i posted so I thought it was time for an update. Its almost two years since my diagnosis, stage VI with multiple liver mets, only hope lovely folfirinox chemotherapy to give me a few extra months. I thought life was over but here I am and feeling good....most of the time!
You can read my story here but briefly after lots of research and the lack of options available to me here, I travelled to America in January 2019 for nanoknife surgery. This was possible due to life insurance and my 12 month terminal diagnosis (proved them wrong!) and some fund raising by my family. This went well for me, i’ve had no complications but i would advise anyone considering this to thoroughly research and ask loads of questions, it’s not a magic bullet and not for everyone. It’s extremely important to make sure your NHS team are behind you for your follow up care afterwards. I’m very lucky my oncologist respects my decision to look outside the box.
I had a break from chemotherapy last summer, had a holiday without picc line in Portugal and a few UK breaks. I resumed chemo i think around August last year at 60% dose, it’s a bit sporadic depending on platelets and what’s going on in my life, 23 treatments to date. i don’t let chemo dictate anymore and don’t stress about missing a week. I still have some pain which is worse after chemo but cope reasonably well, particularly after discovering my ‘magic pill’ for nausea which i take an hour before treatment and lasts for five days. I can’t remember the name but if anyone interested i’ll find out.
Good news!....had a scan Tuesday and my oncologist had the report yesterday which is a miracle in itself! Really good news...pancreatic tumour mainly a cystic fluid filled sack, tumour not ‘lighting up’. I asked about liver and he thought i meant liver function blood test as liver tumours are now just a couple of cysts that he’s not concerned about! I haven’t seen the written report so I hope I heard all this correctly
but he’s really pleased and obviously i’m delighted, I live to fight another day!
I know this beast can rear it’s head again and it won’t go away but for now all is good! CA19.9 hovers around 100/150, it was off the scale at 500,000 at the beginning. I wish I could put weight on but I’m maintaining it, my appetite is pretty good, I get tired and Ive lost muscle strength but my energy levels are good and i live a relatively normal life. I’ve started a (very) small business and developed a web site which has helped my mental state enormously, I paint and create and can almost forget about the ‘thing’ somedays. If I drop dead tomorrow I dont want to regret wasting today when i feel ok and the sun is shining, same answer applies if a miracle happens and I live to 100! I know that’s not likely but we can dream.
Stay positive, read as much as you can, research and learn about your disease but filter out the rubbish, there’s lots. You are not a statistic, you are an individual. Two years ago I didn’t think I’d see that Christmas and I thought life was over, I’m almost, not quite, starting to make plans for the next year! I try to eat the right food, limit sugar and dairy, take supplements till i rattle and i’ll continue with chemo while it works but around my life. If all goes well I’ll consider another break, not sure if i’m right but my thinking is that while I’m coping with the effects it’s good to attack the tumour while it’s ‘sleeping’, I may be wrong but seems silly to wait till it starts becoming active again. I don’t know what’s working but the combination seems to be doing the trick along with remaining busy and positive. Hope this helps, particularly if you are newly diagnosed. It’s not over!