Former Trustee, Karen Tighe
, make a important decision...
When living with a life limiting illness, slowly but inexorably the end of your life comes closer towards you. Nothing can prepare you for the time when you actually have to make a decision about whether you want to continue with treatment or not. It creeps up on you and then all of a sudden hits you like a freight train. That time has now happened for me.
What precipitates making that decision is, honestly, I can say how rubbish you actually feel. It's okay being poisoned if it's going to make you feel better, but if being poisoned just makes you feel worse what's the point. I have now got to that stage where I feel worse more of the time than when I feel better and John and I had always said once that 50-50 barrier was tipped then that would be the time to make the decision. It has been the hardest decision I've ever had to make in my life, which as you can imagine holds not a small amount of irony!
The relief, having made the decision though, is immense. I feel like a huge burden has been lifted from my shoulders. Part of this is not wanting to let people down, or disappoint them. This stems from what people say. "Keep fighting. Don't give up." I haven't given up but I've made a proactive decision about what is right for me. Just a gentle caution for people to consider what you say and the impact it has on a patient in such a situation as mine. I know no one means anything negative. In fact these statements are made only from a positive place. People don't want to lose their friends or family and so they say things that show they want you to stay. So I know that the words they use and what they say are not said on purpose to upset anybody, but just by using the very words "don't give up" you are inferring that if someone makes the decision to do something else, then that's exactly what they're doing. Just be careful is all I can counsel.
I say again I haven't given up I have made a proactive decision that is right for me. Not just right for me though but also right for my family. Once I get over the horrible way I feel from the current chemo, then apart from just being really tired I'll be able to be relaxed and just enjoy myself with my family and friends. I so look forward to that.
So a big decision made. One that has had me pulling more terrible facial expressions as I sob my way through FaceTime with friends. I apologise to those who have been on the receiving end of such a call. For those I have not been able to call, I apologise. I can only say that this is a conversation that can be had only so many times I have run out of energy to do this.
I hope now that as I recover from the toxicity of the chemo, some semblance of normality will return, which is beginning to happen. Mind you the steroids help!