Sometimes the TV shoves things there, right in front of your eyes, which is just as frequently something you want to see, as it something we don’t want to. I doubt that many of you saw “Holby City” earlier this week, for those who don’t know, it’s one of those hospital dramas, where they show medical reality and the lives of those who work there. Although on one level it is just another soap opera, on the other, they show real life medical conditions in the most accurate way that they can. Right at the start of this week’s episode, the ED doctor said that patient had just arrived, with end stage MS. Inside me, there was this amazing conflict, the one that said don’t watch, versed the one that said, I have to see. Just to make things worse, the patient was a woman, not much older than me, who had been diagnosed about 5 years earlier than I was.
In those first few minutes of the show, I found myself feeling so many emotions and so much empathy for someone who didn’t even exist. What they showed was exactly what I knew in my heart, before I even saw her. She was unable to move or to talk, unable to do anything for herself, other than lie there and be cared for. She had gone through the stoma and suprapubic catheter stages and now, all her major organs were closing down slowly. I realised for the first time, why I didn’t fall to pieces when the doctors told me that the most likely end I would have, would be respiratory failure. The idea that my lungs were simply going to be unable to take in air, because my MS, is slowly closing down the mechanism that makes them work, sounded like a quick and painless way to go, I’d sufficate suddenly. It would be over in minutes, rather than lingering for weeks, months or even years.
The story was really about her husbands and her choices over their death plan, they had chosen cryogenics, which meant that they had to freeze her the moment before she died, not my personal choice, and not really the point of what the show made me think about. Of all the things I have thought about, a death plan really hadn’t figured anyway along the line. Yes, an after death plan, but not what happens immediately before. Until the doctors predicted my end, I did have in my head ideas of what I wanted, but they all vanished, which was incredibly stupid. So OK, they might have their ideas of what will happen, and a rough idea from the speed things are progressing , but it’s only their ideas, their prognosis, but they could be wrong, and who’s to say that I will be fit to that last second.
Whether we already have been handed that ticking clock or we believe ourselves to be fit and healthy, there isn’t one of us, who hasn’t thought about our end. When you have been handed that clock, from your original diagnosis or as time passes, we all find ourselves trying to picture just how it will be. Not one of us, picture the reality, we picture the glossy version, the one where we are with those we love and we silently just slip away, after having spent a great day doing whatever it is that makes us happy. The TV shoved right there in front of me, a picture that I had dismissed, but the truth is, it could still be my reality. Her heart stopped, my lungs will stop, not much of a difference really, and it woke me up, out of my glossy version. About a year ago, I toyed with the idea of finding out about hospices and the other option I had considered, palliative care at home, but I did nothing. Back then, it was a much more about finding out what they could do, not so much about my dying, if that makes sense. I had made this plan that I wanted to carry out in a precise order. I had to find out about, plan and pay for my funeral, before, I looked into what happened before. Then was a huge obstacle appeared, as in who owned the grave plot my son is in, and where I want half my ashes to go. That obstacle has been resolved for months, I now officially own it, but I haven’t moved past that point.
Sometimes, we create obstacles in our minds, I didn’t want to think about my end in detail, that would make it even more real than it is at this second. When the real obstacle appeared, it allowed me to stop and I haven’t started it again, not because I don’t have the money, but because I don’t want to make it real. Funerals, they happen after you’re gone, the dying bit, that is the bit we have to do and none of us, no matter how accepting we are, really want to go there. Reality says we can’t avoid it, and maybe, just maybe, if we get to know the details, if we do make our death plans, then we can move on with everything else that this life keeps throwing at us. I think it’s time that I got that plan from months ago on the move again. It’s time to contact the funeral directors, get all the documentation in place and pay for it, then I can speak to my district nurses about the bit before. I already have my DNR, now it’s time to make those death plans, one that covers all the options and possibilities. I don’t know what it will hold, or how it will look, but I have to think about it now, before, it’s too late. Then I can put it away and just live until it’s needed.
Please read my blog from 2 years ago today – 30/09/2014 – Getting angry
I have just gone through yet another painful visit to the bathroom, it’s 11 days since I had last moved my bowels, but I have been taking a tablet twice a day that was supposed to soften the stools and I had hoped that I wouldn’t have to once again take Dulcolax. There is nothing like having a dream is there. Last night…..