Officially incurable

Morning Jools 

I'm sorry to read your post about your latest prognosis.  The positive thing is that you are treatable. 

I think when you are dealing with something like this over a good few years, it does get very draining.  You have coped extremely well so far, and with lots of different drugs/treatments available,  you could quite easily carry on for many, many years to come. It's amazing how strong one can be! Everyone of us on here is guilty of worrying and allowing our imagination to run wild while waiting for appointment dates, results and wondering if the treatment is working etc.

Please talk through your worries with your team, they will understand where you're coming from. 

I was initially diagnosed February 2021,  (different cancer to yours), had surgery and chemotherapy then told July 2022 that it had spread and incurable,  treatable wasn't mentioned, just palliative care. I have since had 2 more chemotherapy treatments, been on a clinical trial, that didn't work and I'm in my 2nd month of a new immunotherapy treatment. I really didn't expect to be here now, but I am and hopefully, I'll be saying the same thing this time next year!

I wish you well...keep going! With my best wishes,  Helen xx

Hi sistermoon I’m grateful for your response. You may be stating the obvious, but sometimes that’s the thing we overlook! I am very lucky that I am very well and in no pain. I hate that I feel guilty for being so well when others are suffering so much. I’m keeping busy until my appointment next Tuesday. I don’t have any objection to another surgery, but am concerned about the recovery time, and the chance of it being successful this time. I know that nothing in life is guaranteed! I hope you are well?

Hi Helen thank you for your message. I’m glad that you are beating the odds! Keep up the good work. I’m not being pessimistic about my situation. My oncologist has told me that we are running out of options and that I have a very small chance of getting to 5 years. If I get offered surgery, and it’s successful, then she is hopeful that I can make it to that magic number! It’s definitely the mental strain, rather than the physical one that I have found most difficult to cope with. For now, I’ll keep plodding on like the rest of you. I don’t really do plodding, but you know what I mean! Sending you a hug for your positive words.

Hi jools, sorry to answer you late, you have had wonderful answers all ready, six months to live or have an operation and live longer, no brainer have the operation and live longer, welcome to our incredible incurable club, live long and prosper 

I'm not bad thanks Jools63 . Thank you for asking. I get tired easily, my body is all aches and pains, if I've been sitting a while I struggle to walk. All just from the surgery and treatment though, not cancer pain. Pleased you are doing ok. Roll on next Tues.

A x

I sometimes think the fatigue is the worst part of it all! I’m glad that the cancer isn’t causing you any pain. Hopefully the pain from surgery will get better soon and it’ll be a distant memory.

Hi again, I have sn update on my future treatment but first just want to say hello to Jools and say like all of us we understand where your coming from. My first chemo began November 22 on copax fro the first session I was so unwell, lots of problems with bloods. I asked them to stop after session five, my cancer was not operable but treatable and palliative to give me extra time. I was then pt on Flofiri and this week had session 10, I have two more to go with final pump due to come off on October 27th. The plan is to have scan have pic line taken out and three months off chemo and hosptal visits. After 12 weeks another scan and see where we are at but if needed they have a couple options to try . I am elated to think I can come off the chemo and perhaps get some quality time withfamily snd maybe enjoy doing some things on my bucket list. So yes there have been times I just wanted to stop the treatment and let the cancer takeover I just had to get my head in positive gear an I’m glad I did. Best wishes to you all and keep in touch on this incredible group ️

Hi Loony I hope you are coping well with your new chemo. I’m sure you must be counting the days until you get that pic line taken out. I hope that you gave lots of lovely things planned for when you finish this course of treatment. I suspect it’ll feel weird getting used to not going back and forth to the hospital. Thank you for the introduction. Wishing you well.