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Bowel Cancer Voices in action
Bowel Cancer Voices get involved in a wide variety of ways, from providing support to other patients to spreading the word about bowel cancer in their local community. Read some of our inspirational examples below, and if you'd like to join the group, we'd love to hear from you.
Patient to Patient Support
"When I found out I had cancer I was desperate for information and found Beating Bowel Cancer on the internet. I saw the section on 'Bowel Cancer Voices' and immediately rang them. They very quickly put me in touch with Lester. We had a good chat, and I felt so much better. We spoke about how cancer affects you and your family, about having a stoma and the likely effects of chemotherapy. He told me it was years since his operation and he showed me how successful the treatment could be. Indeed, every time I spoke to someone else who had been diagnosed with cancer, I felt better."
"Since being involved with Beating Bowel Cancer as a Bowel Cancer Voice I am pleased to be able to encourage others who are in treatment or recovery. I am very much aware of all the medical care and attention given to me through surgery, chemotherapy and radiotherapy and the superb aftercare I received from a team of professionals. Anyone diagnosed with bowel cancer needs support not only from family and friends but from others who have experienced this traumatic, life changing and challenging condition. The charity put John, a newly diagnosed patient, in touch with me and we were able to share via telephone some of our experiences. I was struck by John's positive attitude and his desire to make the best of this setback in his busy life. This, I believe is exactly what every patient should do, realising of course that for some it comes as a great shock and struggle to come to terms with."
"I decided to produce a booklet 'My Genetic Journey' as there wasn't a lot of written information for patients with Familial Adenomatous Polyposis (FAP) and I wanted people in a similar situation to mine to be able to read more about treatments and investigations. I also included personal and often humorous glimpses of my early life so it was not all about cancer and genetics. 56 pages, 17,000 words later (having failed my English GCSE twice this was quite an achievement), I hope to be able to increase awareness of FAP whilst raising funds for Beating Bowel Cancer."
"I received tremendous support from Beating Bowel Cancer and I wanted to give support to newly diagnosed patients. I know the people I have spoken to have been relieved to hear that you can be cured of this illness, which means they can start their cancer journey with a positive attitude. I was asked to feature in a DVD for the charity to promote awareness of this disease. This was the start of me becoming involved with Health in the Workplace presentations which have proved invaluable to the vast number of people we have reached, but they have given me the enthusiasm to work with the charity at every opportunity.”
Talking to the media (local or national, print, TV or radio)
Joanne is 28 and was diagnosed with bowel cancer at the age of just 25, shortly after she got married. The chemotherapy has left her infertile and last year a secondary tumour was found on her lung that was successfully removed. Joanne says, “I had bowel cancer symptoms for months but put off going to the doctor as I didn't think I had anything serious – I put them down to the stress of the wedding, a tummy bug from honeymoon or IBS. If I had known what the signs were, I would have seen my GP much sooner and the cancer might have been diagnosed at an earlier stage when it's easier to treat.” Joanne told her story during a live radio interview with her local BBC Radio station and in 'The News', a daily newspaper in the Portsmouth area.This was part of a campaign to highlight the incidence in bowel cancer in the under 30 age group during Bowel Cancer Awareness Month.
Lobbying their MP
"I think it's really important to get the backing of your MP when raising issues about bowel cancer, not only nationally, but perhaps more importantly at a local level too. Articles or features seem to carry more weight with the local press and are more likely to be printed if your MP is associated with it. Jim Dobbin, my local MP, has been only too happy to endorse everything I have done to raise awareness in my local area; I think this has really helped me get 'published' and perhaps even drawn people to read the article."
Health in the Workplace
"Health in the Workplace is a Beating Bowel Cancer programme which delivers a powerful message about spotting symptoms, prevention and alerting people that bowel cancer is the second biggest cancer killer in this country. As a volunteer I feel I am giving something back following my successful surgery and treatment. As a survivor, talking to people for 20 minutes in their breaks at work, I find they take what I say to heart. Many have told me of relatives and friends they will discuss this with afterwards as well as the impact on their own lives."
"If I had been better informed by someone who had experienced the problems of bowel cancer, then I would have probably taken more notice of the symptoms. Personalising the problems associated with bowel cancer is far more engaging to the general public; it is hard, 'in your face' fact. It shows that survival is possible and that the earlier the symptoms are recognised the better your chances of successful treatment. I enjoy engaging with people and strive to get the simple message across that we all need to be vigilant. The reward is when a member of the audience tells me that I have alerted them to a symptom, and that they will talk to their GP."
"Having bowel cancer has taught me two main things. Firstly, that whether feeling well or not, we all live in the same moment in time. It's not so much about the duration of life but what we squeeze out of each day. Secondly, that whatever dreams you have, you should never delay in trying to achieve them. Illness gave me the motivation to make my dreams become reality. It has sharpened my focus on the beauty of the world. In the process it has introduced me to some wonderful inspirational people. I feel very privileged to have "trekked Peru" with Beating Bowel Cancer in 2009."
"Two years ago, I was diagnosed with bowel cancer. As you can well imagine the news really hits hard. The consultant was very matter of fact, giving me various statistics and saying that bowel cancer is curable. I was 63 and looking forward to a long retirement and this was a very scary time for my family. My purpose now, following treatment, is to alert people to the symptoms. This was put into practise when my wife and I held a stall at my local May Day Festival to raise awareness of the disease and raise money for Beating Bowel Cancer at the same time."
Volunteering time and/or particular skills
"I have used my knowledge and experience of bowel cancer as a carer to my wife Sheila, who lost her fight against the cancer in 2009, to become a patient advocate. The help and support we received from Beating Bowel Cancer has encouraged me to continue working with the charity to fight inequalities for cancer patients in the NHS and to help spread the bowel cancer awareness message. I contributed to a workshop attended by Prof. Sir Mike Richards (National Cancer Director) looking at NHS 'top ups' and attended as a 'patient expert' when NICE reviewed the use of Cetuximab (Erbitux), for treatment of metastatic (advanced) bowel cancer."
"I was 29 when I was diagosed with bowel cancer. I was proud to be asked to speak on behalf of Beating Bowel Cancer in front of a room full of MPs at their BE LOUD reception at the House of Commons and I immediately agreed to do it. I believe that using an unusual and non-stereotypical bowel cancer patient illustrates that bowel cancer really can affect anybody. As a patient who had every red flag symptom, but was misdiagnosed by my GP, I believe it is vital that these symptoms are highlighted in future so they can be acted upon by both the patient and GP."