I am really glad to be able to put my experience to good use…

Claire from Oxfordshire Advocacy describes her recent experiences as a cancer advocate and the value of an advocate having a shared common experience with the person they are supporting.

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

 Anne (not her real name) was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Anne lives alone, struggles to get out and had become very isolated & depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised the many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

 In the first few weeks when I visited Anne at her home, we often would just talked and shared experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

 Since then, I have been able to help Anne in a number of ways. For example, I contacted Breast Cancer Care (I knew how good they were from my own experience) and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Anne suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Anne had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the MacMillan website ( Anne doesn’t have a computer or access to the internet) and took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects. 

Most recently I was able to help Anne with her application for a one-off MacMillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her (and I could use my experience to help with the spellings of all the drugs she was taking!). She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

 I hope that with these few examples I have managed to convey that working with Anne has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system & how to get support. I am really glad to be able to put my experience to good use.

Claire, Oxfordshire Advocacy

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You don’t have to carry cancer around on your own

A problem shared really is a problem halved!
Cancertalk Week
20-26 January 2014

Project partner Macmillan Cancer Support is running Cancertalk Week – Dealing with cancer is hard enough without worrying about it all yourself.  If you’re embarrassed, worried about upsetting other people or just unsure about speaking out for whatever reason, Macmillan Cancer Support are here to help.

If you want to find out more information about your type of cancer or cancer therapy and treatment they have all the information.

As many people worry about financial support, specialists will be available to offer advice about your own personal case.   Just give them a call on: 0808 808 00 00 or click here for some financial tips.

Macmillan Cancer Support also realise that catering to your emotional needs is a huge one.  If you’d like to get put in touch with people that are going through a similar experience, you can join the online community or cancer support groups.

Find out more information about Cancertalk Week here.   During previous Cancertalk Weeks Macmillan encouraged people affected by cancer to talk about it to sum up their feelings and worries with family, friends and professionals.  Devastating, rollercoaster and heart breaking are just some of the words used to express peoples experience of cancer.

If you have cancer, try to speak to someone about it, and it doesn’t only have to be when this event comes around – there are people out there who want to help and listen.

Kath Curley

Cancer Advocacy Project Lead,  Beth Johnson Foundation

My experience of being a Volunteer Advocate

What is it like – being an advocate for the Beth Johnson Cancer Advocacy Project? The first thing was finding the courage to apply, first of all I thought perhaps I was too old; secondly could I manage to drive around the Potteries when required to visit a client without worrying about it for too long? I phoned for an interview.

I feel very strongly about helping people with cancer as I have been a victim myself so it was very comforting to have my phone call answered by a very pleasant lady – the Project Co-ordinator. She informed me about the things I would need to do before I could be accepted.

I thought at first it would be quite a daunting project even though I was a retired nurse. The people we get involved with are vulnerable with life threatening illnesses to contend with, for example, being so ill they have to give up their jobs and have no money coming in, is yet another worry for them. This I soon found out after several courses and meeting lots of very interesting people who dedicate their lives to helping these sick, vulnerable people.

Sheila Kay

Several months on I have been accepted (I think?) and enjoy going round to visit these people. Some are very nice and it makes you feel quite sad because of their suffering but it gives you a nice feeling to be able to support them and signpost them to people and organisations that can help their situation. I, myself, did not realise just how many people out there can help and I have found lots of organisations willing to help older people affected by cancer. One such person, an elderly retired gentleman, had only his pension to live on and he had retired early through illness, was finding it hard to survive. My mentor, who I went to visit this gentleman with, was very good at explaining things to him, gave him lots of information on who to contact. It was so good to see the relief on this man’s face when we came away with a promise to follow up our visit with another one and keeping in touch by phone on a weekly basis.

This week we have another meeting and workshop. I will also have another person on my list to visit and a catch up with what has been going on with the other clients.

On the whole I am really glad I applied for this project. It is good to help people and also interesting learning about life with cancer and how other people who have no-one to support them can survive.

By Sheila Kay