Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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‘Ask every question in the book’

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?

Maureen Lipman

Maureen Lipman

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.

Kathleen Gillett

Dorset Cancer Advocacy

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When cancer is diagnosed

Tom is 72 years old and lives alone. His wife died several years ago of breast cancer. He has two children; a son who is in Australia and a daughter who lives and works in London.  Tom’s GP referred him to the Oncology department at the local hospital where he was given a variety of tests and given another appointment. He was advised to take someone with him for this visit but decided to go alone. When he met with the consultant, despite his suspicions, he was still shocked when the doctor told him he had prostate cancer.

Tom was quite unable to take in what was said to him and when he left he could hardly remember anything that the doctor had told him. He was given a lot of leaflets containing information about his cancer but didn’t feel as though he could look at them. He didn’t want to bother his children because he didn’t know what to tell them. He felt confused, apprehensive, and depressed about his future. He would have like to have had someone to talk to but didn’t feel close enough to anyone to share his feelings. One good friend, who knew of the diagnosis, gave him a leaflet about the services offered by Dorset Advocacy and offered to help him make the call for help.

HOW DORSET CANCER ADVOCACY HELPED

 When Tom contacted Dorset Cancer Advocacy, he was put in touch with a volunteer advocate, David, who arranged to meet him in his home. Tom was relieved to find David a friendly and sympathetic listener. After being assured that his privacy would be respected he felt able to tell David about his fears and concerns, mainly how to find out more about his condition, treatment and outcomes. He was also anxious about informing his son and daughter. He was unsure whether he should tell them about his diagnosis and did not want to become a burden to them. He also had financial concerns about paying for additional help, if and when they it was needed.

With the help of David, he developed a list of specific questions he had for his doctor. He and David went through the leaflets to gain more understanding of his diagnosis. He welcomed David’s offer to accompany him to the next appointment so that any remaining questions would be addressed.

 Tom then told David about his son, living in Australia, and his daughter who had a very busy life in London. Although he felt it important that they know of his cancer he did not have enough information to give them. He thought that he should know more before informing them so that he could answer any questions they had. David supported this decision and they made a list of questions about sources of help and care that were available.

Finally, David was able to provide him with a list of agencies that could address his financial concerns. He also promised to return with additional information that would be helpful to him.

They arranged to meet again and David left a contact number so that Tom could contact him should he need more help. As Tom watched David drive away, he breathed a sigh of relief. Here was someone who could be a real friend and supporter, who would understand his fears and could provide support. He picked up the phone to thank his friend for helping him make the call to Dorset Cancer Advocacy.

Janet Lister, Volunteer Advocate, Dorset Cancer Advocacy

This is what we do; it’s what this project is all about. If our application to Big Lottery’s Silver Dreams Flagship programme is successful we’ll be able to support lots more people like Tom. Wish us luck!