Being a Dorset Macmillan Advocate

Dorset Macmillan Advocacy volunteer advocate Janet Lister describes her role and what it is she does to support older people affected by cancer:

I’ve taken on many volunteer roles since retiring, some of them more satisfying than others. But becoming an advocacy volunteer has turned out to be the most worthwhile volunteer role that I have ever been asked to play.
 
It has called upon a lifetime of personal experiences, of being faced with a diagnosis of cancer, of supporting family members and friends through a variety of difficult cancer treatments, of working with health care professionals caring for cancer patients in a hospital setting, all of which I expected would be important in my advocacy role.

Janet from Dorset Macmillan Advocacy

 
But I have been overwhelmed by what I had not anticipated – the  privilege of being allowed in to the private lives of my advocacy partners, to be told the most intimate details of their lives, their family and personal relationships, and to become a true support and ally in their difficult journey.
 
I find that the most important need of our partners is to talk – they need to express their feelings, fears, doubts, and worries to a friendly, non-partisan, non judgemental person.
 
I have found that these initial conversations may, in the beginning, raise minor concerns that seem easy to fix. But often, hidden away in what may seem harmless conversation, there are deeper concerns. Sometimes you have to intuit these conflicts, mentioned in passing, and feel confident to dig a little deeper.  In this way you can help the person to reflect on their treatment choices, and to prepare for the many challenges that living with, and surviving, a cancer diagnosis brings
 
Of course, they may be situations where the prognosis is not so happy. Here also you can fill an important role in helping the patient and the family to come to terms with the decisions that might have to be made. Here, as with all discussions you have, it is important not to become too involved, or to bring your own feelings and opinions into the discussions.

It all sounds very difficult but I assure you, it is all worthwhile and you will get the gratitude of the patient, their friends and family in the end. To be allowed into what becomes a very intimate circle at such is a difficult time is a rare privilege which gives me much satisfaction.

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Someone to rely on

Recently project partner Dorset Cancer Advocacy was featured in the following article in the Dorset Echo.

Someone to rely on- Dorset Cancer Advocacy offering support to older people with cancer

Dorset Cancer Advocacy is an innovative service that offers support and information to older people with cancer.

Marion, Nina’s advocate

Here Nina, 69, a Bournemouth widow who has been battling breast cancer, explains how it helped her cope

“Before my diagnosis I was enjoying retirement and keeping active by walking and cycling, I had never felt so well. I was diagnosed with breast cancer following a routine scan and have undergone nearly a year of treatment since then, including two courses of chemo-therapy, surgery and radiotherapy.

I feel lucky that the cancer was found, but when they say cancer it knocks you flying. I’ve told some of my friends just the details that I want them to know, I don’t want to burden them.

I was taking part in a clinical trial during my chemotherapy course. The Research Nurse suggested I try the Dorset Macmillan Advocacy service as it offers home visits.

MAMOGRAM: Screening is to be extended in older women

The service co-ordinator came to meet me at home and then supported me for a short time, including with hospital appoint-ments, before introducing my volunteer advocate Marion Summers to me.

I could share my feelings about the cancer and what has happened to me with the co-ordinator and Marion. I knew they were there to support me. The effects of the chemo-therapy meant I would forget what people said; I felt turned inside out. Other side effects meant that I stopped driving and lost the confidence to use the bus and to go out.

Marion took written notes at hospital appointments for me to refer to afterwards. When I was offered surgery I felt stunned; I wasn’t sure how I would manage at home alone afterwards.

Before my operation Marion gave me information on getting extra help at home and meal deliveries, in case I needed it after my operation, and she also looked into local health walks.

After my operation Marion called to see how I was and find out when I would be going home.

I felt more confident with someone behind me. I was quite afraid of one particular health professional and, when we went in for the appointment, Marion said ‘We’ll do it together’ which helped a lot. I feel listened to.

Now I am getting out more, driving my car again and using the bus for local trips.

It is good to have someone else to rely on when you are alone. After my operation Marion said ‘We’ll be there for you’. It gives you a warm feeling someone saying that.”

One in three are over 70

There are around 1.3 million older people (65+) living with cancer in the UK One in three cases of breast cancer – and more than half of deaths – are in women who are aged 70 or older. Despite this, the age group is not routinely screened, although the cut-off age for screening is to be extended to 73 by 2016. One study has found that elderly women are being denied life-saving breast cancer surgery routinely given to younger patients.

You can read Nina’s story and Marion’s take on advocacy support in Every Step of the Way, our new publication.