Hi everyone
here is a brief sum up of my story,
May 2020,, diagnosed with pancreatic cancer, aged 55 spent 3 weeks in hospital had 7 operations to get a stent in the bile duct I had an external bile bag every time they disconnected it I became really ill again eventually it worked and I got to go home , the tumour is inoperable.
August 2020,, PICC line inserted, chemotherapy started, ( folfirinox), first session back into hospital 2 days vomiting, second session back into hospital with bowel issues, they decided to reduce the chemo strength from 100% to 64%,, all the symptoms remained but , they were greatly improved, scan shows that the cancer has not shrunk but, it is stable so we go for another 5 chemotherapy. (10 in total)
January 2021,, scan shows that again the cancer is stable but not shrinking ( but , it is also not growing , evidence that the chemo is working.) due to the wear on my body ( I am now just on 8 st have have a platelet infusion and 2 blood transfusions) they decide to stop the chemo and refer me to Poole hospital for chemo radiotherapy, I have the plans all in place ,, I then get poorly so treatment postponed,
April 2021,,I had now been admitted to the emergency ward where I stayed for 5 days in drips , as I had developed biliary sepsis,, came home for 1 day then went back in (pre booked) for a ERCP as my bile stent had stated to block ( I guess I was lucky in a way as I had had it in for 10 months ) the tumour had slightly started to grow up the bile duct, hence the start of a blockage, they did work on the original stent and added a second stent. I have now been told that chemo radiotherapy is no longer an option,
I came home in a lot of pain ( as expected) rested, less than 48 hrs later I started to feel really poorly, temperature was 40.5 so off we go to hospital again where I spent 8 days on IV antibiotics to kill another septicaemia infection picked up while having the ERCP,
I have have to say that now they have it all sorted I do feel really well and I am gently and slowly doing normal house things , my specialist and I have spoken in depth and we have agreed to try the folforinox chemotherapy again , as it did work in as much as keeping the cancer at bay , but it did make me quite poorly and we will be watching this closely
My question to you is , has anyone had even a similar experience, and how did you feel , ? And cope , ? I have been very strong and positive but I do feel like I am getting tired, I will of course keep going, keep positive and keep fighting, I just wish sometimes that there was someone who totally understood, you can explain so so many times to people but, still feel very alone.,, thank you for reading.
