Hi Riven. I have been reading this thread for a while but not sure how to post. I wanted to last night but a friend called and I didnt want to do it whilst I was on the phone.
When my DD was dx with cancer my immediate fear was that she was going to die right away. After the intial shock we realised that this would not happen, the treatment should keep the cancer at bay whilst she was on it. Her treatment was due to last 2 years.
Then it became apparent that the treatment was likely to kill her. From the moment I knew that I lived with the knowledge that my DD may not make it through the day. Children on cancer treatment become gravely ill very quickly. They are watching tv in morning and in ITU by the evening. They have strokes, get sepsis, pnuemonia and have extreame reactions to medication. I imagine that these sort of conditions are common in children with life limiting conditions too. My DD also developed epilepsy as a result of the neurotoxic chemotherapy.
You will know that looking after a child like this is like being in a war zone. Long periods of boredom (for want of another word) doing the mundane caring, living etc and suddenly intense periods of the highest stress imaginable when you child becomes sick. I think it sets our adrenaline levels so high that our physiology changes. A bit like children who have been severely abused, they are constantly on alert. I know that I became like this and have never really recovered.
We came to the point when we were told there was no hope for DD. She was going to die. We did not know how long she had or what would happen to her. It is something you cannot imagine. How would you cope with that news? But you just do because the world does not stop turning. I suppose once I knew that there was no hope of a cure I had to change my mindset. I had to make sure what was left was the best it could be. Full of love and light and my DD knowing how special and important she was.
I was terrified of the pain she would be in. She had suffered terribly throughout her illness. But ironically they managed to get her pain undercontrol. This is something I thank God for everyday. I was also terrified she would die in a trumatic way like bleeding to death. She was given treatment to help avoid this and it didnt happen.
I had noone who would discuss her death with me. I wanted to ask 'what will happen', 'what will it be like?' and no one would tell me. Then I phoned our local children's hospice and the did. They would answer my questions without crying and trying to stop me talking. It helped so much because I was so scared.
I spent weeks almost wishing the time would come but so so so not wanting it to happen. To want more time with my DD but not wanting her suffering to continue.
I found myself whispering things to my child I never thought I ever would. I told her it was fine to go if she was ready. It was like watching some made for tv film.
I felt like an alien as no one around me could possibly know what it was like. I still had to shop and take the kids to school and talk to other people. All the time in my head 'my DD is going to die'.
In the end she went peacefully, without pain, with me and her dad, at home. I couldnt have asked for more.
We survive. I am still here and I live my life. I will never be the person I was. I miss her everyday and the pain is still great But I am still here.
I hope you dont mind me posting on your thread. I dont know it will offer any help or make things worse. I have read your posts and wanted to try and say something.