Hi, I had a Whipple in Mar 2020 (just before they were cancelled by Covid) I felt very lucky. This was followed by GemCap chemo from June to November 2020. After a scan in February 2021 recurrence showed up and I was offered Folfirinox Chemo as end of life treatment. From my initial diagnosis in February 2020 when I suddenly had Jaundice until now April 2021 I haven't really had much good news. I know I don't have long to go and in general terms I have accepted it. I don't have any support at home and live on my own. Who can tell me what my path to death is probably going to involve? I have been independent until now but I am not sure how long this will continue. Will I end up lying in my bed at home on my own slowly dying?
Hello AI01
Welcome to the Pancreatic Cancer Forum, I know it is very difficult to type your first post, you have been very courageous, not only by writing this post but also undergoing all the treatment that you have since February 2020.
I know of others who have had a similar diagnosis to yourself, but do not have direct experience though wanted you to know that others are here and are reading your post. It is however very difficult to answer your questions, firstly because, although as you have said, you have not had too much good news since Feb 2020, you have done extremely well, the initial surgery and treatment seems to have been successful in so much as keeping this terrible disease contained. Then to have captured the recurrence in a scan this February, has enabled further treatment in the Folfirinox chemo, which, hopefully will continue to keep this disease contained for longer still.
To read that you do not have any support at home as you live on your own, is possibly the area of your post that I would most like to focus on if this is ok with you, because I think this must be extremely difficult for you. I can only imagine how tough this must be for you at times, especially as you believe that you don't have long to go, and although you may have accepted that in general terms, I imagine that with all of the questions running through your mind and no one at home to talk through those thoughts with, the element of fear that must present must be overwhelming at times. (forgive me if I am wrong in this perception)
HERE are some of the emotional help areas within the Macmillan site, which includes information on how to receive a weekly call from the trained Macmillan Telephone Buddies, if you choose to try out this service, you may be matched with someone who has a greater understanding of what it is you are going through and maybe even be able to re-assure you in regards to how end of life may look further down the line.
I hope some others will be along to chat with you soon, and I do hope you don't mind me replying to your post.
I wish you the very best and hope that any further treatments are kind to you
Lowe'
