Recently I tried to show how advocacy support can be preventative by describing how, at every stage of the cancer journey, a patient and their advocate can consider aspects of their treatment and care by looking forward to the short, mid or long term and thinking through how they would like that stage to be and what plans they could be making already to work towards it.
To help me visualise this I plotted the people that we have supported to date during the pilot phase of our project along an imaginary line representing the cancer journey. I realised then that people had a need to look back as well as looking forward.
One person that had called us for support after seeing our leaflet in his local surgery said initially that he wished to talk to someone mainly about how his secondary cancer would progress, he felt ‘in the dark’. It transpired that he had many unanswered questions about the treatment follow up that he had received in the past and the return of his cancer. These questions were causing very strong emotions which were hard to deal with while feeling very fatigued.
I saw how the ability to look back and feel assured that everything possible has been done and that you have made the best choices that you could for yourself regarding treatment and care would underpin the ability to look forward and plan for the next stage or for the end of life care that you want.
It is not only patients but carers too who should be able to look back at any stage and feel satisfied that they have done the best that they could do. Actress Maureen Lipman whose husband Jack Rosenthal died of myeloma in 2004 said in an interview for AgeUK’s The Wireless broadcast on 14 December that if she could live one year of her life again it would be the last year of his life. It would not be a happy year but she would deal with his illness in a different way. Above all she would find out more information about the illness. She would ‘find out everything and ask every question in the book’. She would have him treated closer to home, she would question his treatment and ask ‘holistically what is right for this person?‘
Our independent advocates work with their advocacy partner, be they the person with cancer or the carer, to help them make informed choices all along the cancer journey. The advocate can listen, be a witness, and enable them to explore their feelings and express emotions as they arise. I believe that advocacy support can help people to look back without regret.
Dorset Cancer Advocacy