when does end of life care begin ?

Dear Kate.

I am so moved by your mail I can't write much just now.

lt reached so many thoughts and feelings I have.. I feel like a number. Hopefully I can be as strong as you , so far decisions I have made with family are accepted.  I will keep looking for mail from you . You will be in my thoughts . Love Colleen x x

Dear

Dear Kate, I’m so glad you found the information useful, I agree with all the thoughts you have expressed in your post, especially about being in no mans land. Part of the problem is that the idea of death has gone out of fashion and there is a tendency to believe there is always going to be as solution to every cancer diagnosis but we know that’s not true and as terminal patients we have become an inconvenient truth, hence other than at the hospice support is a bit thin on the ground and ignorance amongst the general public about our plight is widespread leading to some insensitive comments and lack of acceptance of our reality. It’s the reason why I’ve been so determined to champion the end of life forum despite some pushback from some misguided individuals. I know many people read our posts even though they are not members or haven’t reached the end of active treatment but want information so as to be prepared, so I don’t feel as though we are wasting our time and even after I’m gone these posts will be here for anyone who is interested in reading them. I want my personal legacy to be that I helped to break down the taboos surrounding end of life care and support the people in the hospice and medical community who are trying hard to make a change. In the era of many new life extending treatments with uncertain outcomes the numbers of people living in limbo will only grow and it’s time for a wholesale change in the nhs to provide ongoing support as they make the transition to end of life care which in most case will inevitable arrive.

Jonty

i find as I have already mentioned in earlier posts your contributions extremely helpful.  I looked after my husband when he was ill and in a previous existence trained as a nurse caring for others in our position. As a young student nurse in the 80s I worked in a hospice to make extra money and learned much.

For me your advice has allowed me to make sense of my current circumstances, hold the living with and end of as ideas learning from both. Gain support from you and the others on the forum, make preparations for when circumstances change , but live in the moment now. At the moment I am discussing potential treatments but am under no illusion ( for me ) that at some point things will change. I also think that people struggle with the idea that individuals are living with cancer some for short, some for longer periods of time, it is not what they expect. Enough form me , just wanted to say thank you form me. Take care.