Older People Living with Cancer

Peer advocates supporting older people affected by cancer

Susan tells J’s story

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I am a volunteer advocate from Oxfordshire Advocacy and a Cancer, Older People and Advocacy volunteer.

I first met J at the Churchill Hospital in Oxford prior to her first consultation with the surgeon following a diagnosis of cancer of the uterus (womb). J was a delightful 83-year-old lady, tall, elegant wearing red lipstick and bright red nail varnish on her fingers and toes, and she reminded me of an elderly Meryl Streep. J was a widow, had no immediate family and her next-of-kin was a disabled sister in Birmingham, she did have some very supportive young friends who had young children but who were unable to attend consultations during the day.

OA

The first time we met was at the entrance to the hospital and we went to the gynae outpatients department where a very attractive male doctor (J’s words not mine) told her that the plan was for a hysterectomy within the next few weeks. A Specialist Nurse was in attendance and gave J information about endometrial cancer and treatment. J was not surprised about the plan for  surgery, but was determined that she was not going to have chemotherapy as a friend of hers had died following chemotherapy for liver cancer, although she was willing to have radiotherapy. My role at that consultation was to support J in getting across to the medical team that she did not wish to have chemotherapy.

After each hospital visit we went for a drink at the hospital café, which gave J an opportunity to talk about the consultation and any concerns she had.

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On one occasion we visited the Maggie’s centre where we spoke to the volunteer staff and received information about Attendance Allowance from the Benefits Advisor.

I visited J at home several times to go through the information that she had been given regarding surgery and treatment options and to help her complete the benefit forms. I supported J at her preoperative assessment and at her consultation after her keyhole hysterectomy. I supported J in discussing her wishes at her appointment with the oncologist.  By the second visit to the oncologist the results of the CT scan were known which indicated that there had been further spread, and the plan was for four sessions of palliative radiotherapy. The specialist nurse spoke to J about the support available from the local hospice.  However J was very upset as she felt that hospice intervention meant that she was dying. She continued to deteriorate and she asked me to attend for moral support when the specialist nurse from the hospice visited her at home.  This meeting went very well and the specialist nurse was able to give J advice on diet and pain management.

I went with J for her first two radiotherapy sessions.  She telephoned me at the weekend after the first radiotherapy session, extremely distressed and weak saying that she was unable to eat or drink or walk. I visited her at home 40 miles away and supported her to get something to eat and drink and encourage her to take her analgesia.

J never did have any more radiotherapy. I went away and on my return I contacted her and she sounded very frail .  I went to visit the following day but when I arrived a neighbour informed me that J had fallen that morning and had been taken into the local A&E department. I visited her there where she was in a lot of pain, frail but cheerful and glad to see me. However over the next week or so her condition deteriorated and I visited her in one of the inpatient wards at the local hospital (she was too unwell to be transferred to the hospice). Unfortunately J had had a stroke and was unresponsive, she looked very comfortable lying in bed with radio 3 playing in the background (J was a lover of classical music and a pianist) and I was still reminded of Meryl Streep. She sadly died the following day.

Susan

Susan

I was so glad to have met J as part of the Cancer Older People and Advocacy project and to be able to help her through her cancer experience. As she had no friends and family nearby I was able to offer her support, and help her navigate her way through the system and help her ask those often difficult questions and understand the response. I was a shoulder to cry on, someone to give her a hug when she needed it, an arm to guide her through the hospital corridors and in the end someone to push her in a wheelchair to her last radiotherapy appointment. My involvement with J was a real privilege and J was extremely complimentary about the assistance the Cancer Older People and Advocacy project had offered her.

Susan Mackie, Volunteer Advocate, Oxfordshire Advocacy

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Author: Marie McWilliams

OPAAL's National Development Officer

One thought on “Susan tells J’s story

  1. Hello there,

    Bone Cancer Research Trust is carrying out a national survey into the experience and impact of primary bone cancer on patients and their families. Please could I ask for your help in sharing news of our survey with your blog readers?

    Ahead of our 10th birthday in 2016, BCRT is undertaking an extensive project that will help shape our future vision and plans by ensuring that the needs of our stakeholders (patients, families, healthcare professionals, clinical researchers, fundraisers) are at the heart of what we do.

    As part of our project, we are conducting a national survey to capture the views and experiences of people whose lives have been affected by primary bone cancer. We hope that it will be one of the biggest studies of its kind.

    Chondrosarcoma is a type of bone cancer which mainly affects people over the age of 50. Because primary bone cancer tends to affect young people and young adults, older patients are a much-neglected voice. We want to ensure that our national survey reaches older patients so that we can actively take their views and experiences into consideration.

    We will share our research findings publically once our project is complete – we expect this will be in March/April next year.

    There is some text below to help you share news of the survey. If you have any questions about our stakeholder research, please let me know. Otherwise, my thanks in advance for your help in distributing this.

    Thanks and best wishes,

    Catherine Newman

    Bone Cancer Research Trust is conducting a national survey designed to capture the experiences and views of primary bone cancer patients and their close families/friends.

    Adding your voice to their research will help shape their future plans, and create an up-to-date body of evidence about the impact of primary bone cancer.

    Click on the survey link to take part , and don’t forget to share it with anyone you know who has also been affected by primary bone cancer: http://bit.ly/1Kln6VL

    You can find out more about Bone Cancer Research Trust here .

    cat_signature

    Catherine Newman

    Communications Manager

    Bone Cancer Research Trust

    http://www.bonecancerresearch.org.uk

    0113 258 5934 | 10 Feast Field, Horsforth, Leeds, LS18 4TJ

    stakeholder_email_sig

    Help shape BCRT’s future vision and plans by taking part in our national survey on people’s views and experiences of primary bone cancer. This is open to patients, and their close family/friends.

    Like

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