More than slightly morbid blog post.
After hearing my tumor markers had gone back up, thoughts of death have reared their ugly heads again. Most of the time as I go about my day-to day business, as much as we are looking at control rather than cure and that control will probably have a limited time frame, I push the thoughts of my death to the back of my mind and close the door after them.
Likewise it is a time that OH and I have some very honest discussions about the likely timeframes and what will happen closer to the end.
As much as I hold out some hope for a spontaneous miraculous remission I also acknowledge the reality of the situation and the chances of that remission happening are not as high as the less desirable outcome we are all facing.
I’m glad OH and I can talk about it, both seriously and with touches of very dark humor, and OD and MD are the same.
But one of the things I love about OH is that he is also opening up to some of his work-mates about the emotional toll it has on him. He relayed to me that when he was telling one of his work-mates our latest news, she asked him how he felt. He had replied ” It’s like we are falling down a rabbit hole, with each piece of bad news we fall a bit further down. And we both know that eventually only one of us is going to make it back up”
When he told me that I envisaged us roped together down a hole – me a little further down than him, and I said that to him and I said there will probably come a time when he has to untie the rope and let me go. And climb back to the surface alone.
It’s not that I think it is going to necessarily happen any time soon but with chemo options starting to be in shorter supply and knowing the reality of my situation – I know we have to acknowledge it will happen eventually. And our family believes it is better to talk about things, even down to things I might like for my funeral while I am able to make those decisions. If my condition was to deteriorate rapidly and we hadn’t had those discussions, my family wouldn’t know my wishes. It’s not like I am sitting down and planning my funeral, but more just having the odd conversation when I find a song I might like to be played or so on. I can express that wish, they go OK, and we move back to more everyday matters.
I made my friend N at university cry, she is an accomplished musician and singer and one of the things I have thought is that I would like her to sing a song at my funeral. When I told her that, she was very moved but said she also had been thinking a little along the same lines herself, and although I had made her cry we both agreed that whether it happens in 1, 2 or five years time; it was better for us to talk about it now when it doesn’t weigh so heavily on either of us.
As I think of other little things I tell my family or jot them down or if they are something that I see in a newspaper of magazine I will cut them out and put them in a little file I have started, and yes the label reads ‘Jenny’s funeral ideas’. Some of them will be dismissed closer to the time, but having that file and that discussion now will definitely make it easier on myself and the family if and when we have to plan my funeral for real.
We still haven’t had these conversations with YD and we won’t until we have a more definite time frame. We will tell her the cancer is not likely to go away again, but unless she brings the subject of me dying up, I would rather not broach it with her while there is such an ephemeral time frame and also when I am not ‘acting’ sick. I need to find some good children’s books, aimed about a 5-year-old level, to help her cope and process when the time comes for us to tell her.
I did warn you this blog post was morbid, but I firmly believe that it is important to acknowledge the reality of what we are dealing with
I am not actually afraid of death itself, I have faith in an afterlife, and when the time comes I hope to go with grace.
I just hope it doesn’t happen too soon.