Hi everyone, this is my first post here. We have been on a roller coaster with my Dad's health journey. Primary sclerosing cholangitis, liver transplant, colectomy, and now stage 4 colorectal cancer which has been unresponsive to treatment (chemo). We were recently told it has spread to 3 other areas since his last scan 3 months ago & the doctors have now prescribed Stivarga. Given the liver transplant he is severely immunocompromised which adds another layer of complexity in last line options. I don't know what the next steps are, or how much time we have left. His energy levels are completely out the window, the fatigue is extreme. It's like his body is giving up.
I'm planning a last minute wedding ceremony early next year but I'm now worried my Dad won't even make it to that & the thoughts of not having him walk me down the aisle is making all of this feel even more difficult (as I have dreamed of this moment for him and I to share for a very long time...).
I'm not sure what kind of response I'd like with this post but if anyone could share any kind words of how to live with the uncertainty of how much time we have left. I am a 'doer' and I'm feeling incredibly helpless in this situation. The unpredictability and ambiguity of this disease is so difficult to reconcile; it feels like I'm in a film, watching all of this play out.
Hi Solas welcome to the forum and I am so sorry to hear what is happening for you. I think you describe how things are happening and the uncertainty perfectly and I can also understand that that doesn't give you any direct answers..I'm wondering is it possible to bring your wedding forward or to have the wedding ceremony at dad's bedside or his home. That will ensure that he can be there and you will have some wonderful memories from your special day.
gail
