Dear Tom

i know where you are coming from sweetheart,and i know this post is going to illicit some fierce replies,not least from those who are fighting this disease with everything they have got,but like you Robin was concerned with quality of life,not quantity,and if he had known the path his illness would take him i can tell you straight ,he would NEVER had taken it.The temporary loss of his normal functions he could have tolerated i think,but when it went on and on ,he got angry and frustrated.The terminal diagnosis was the last straw and he was bitter and resentful that the last months of his life were spent being fed down a tube, losing his voice,losing his taste,his strength and his joy de vivre.For the first time in his life he was reliant on state benefits which he was ashamed of,and silly as it may seem to some ,the loss of his ability to "perform as a man" upset him so much he cried.

On the other hand i would have done anything to keep him with me no matter how he had to live,and that is selfish.
Some here will say you are wrong to feel as you do and that life is precious and you should fight to the end,having watched Robins demise i dont agree,and more to the point Robin and i talked about this at great length and it gave me a better in sight into how HE felt.

Bottom line Tom this is a decision only you can make,and you should talk to your family about it,who knows,they may feel the same as you,and fully support you if you decide to have no more treatment.They may cry and beg you to fight it but if you tell them where you are coming from and your reasons why you are reluctant to go on with more treatment,they may just understand.

I must disagree with your analagy about your impact on this world and how it will effect the ones left behind.
My father died 28 years ago and not one day goes by that i dont miss him,and regret the fact that my children and grandchildren didnt have the benefit of his kindness and wisdom,but they have his genes so i guess that will have to do.

As for losing my young husband,i cant even go there.
At 53 i see no future,life is cold and empty and my heart aches with a pain that even my two beautiful grandaughters cant heal.At the end of the day when the front door shuts there is no one but me,it is empty of any sound except the television,and when i put the lights out and climb the stairs it is to a dark loveless room where all i have is my memories that at the moment are too painful to bear.

It will take a lot of working out Tom,and i hope whatever you decide is right for you and your family.

I dont envy you the place you are in right now but hope you will get some solace from the people here who know better than me where you are.

much love liz