A018010-R1-27-27A.jpg

Cancer Champions

Everyday Experiences of Greater Manchester Cancer Champions
 
 

This article tells the stories
of cancer champions.

These stories provide a snapshot of what inspires people to become involved, what they are doing as Cancer Champions, and how it feels to be part of a bigger movement to eradicate inequality in a generation’s time.

Cancer Champions is a movement aiming to bring 20,000 local people and organisations together to help prevent cancer across Greater Manchester and support people who have been diagnosed. 

Last year, we asked people what they want to do as Greater Manchester Cancer Champions. The responses formed the following seven ‘calls to action’. New champions are asked to pledge to do one of these:

  1. Learn more so I can talk confidently about cancer with friends and family
  2. Raise awareness about the importance of cancer screening and encourage people to take part
  3. Speak up about why people in my community are getting cancer and what we could do about it
  4. Talk to people about how a healthy lifestyle can help prevent cancer
  5. Use my experience as someone who had/has cancer, to support others who are living with and beyond cancer
  6. Promote the involvement in services of the family and friends of people living with and beyond cancer
  7. Encourage people in my community or workplace to become a cancer champion

If you want to be part of the Greater Manchester Cancer Champion movement:

Cancer-Champions-Logo.png
 

A018010-R1-17-17A.jpg

Angie

I love people. I love engaging with people. I enjoy the conversations. I want to try and do something good for the community, because this is where my strengths are. I feel that there’s a lot of stigma in our communities about cancer. People don’t want to talk about their health conditions…we just don’t do it. Especially our older people, who can often think ‘oh, I’m a certain age now, so what’s the point?’ I’m quite a chatty person. I think it’s really important to talk about cancer and I have that conversation when I’m out and about… I’m trying to influence people to get checked.

A conversation just starts with hello or whatever. You could be at the bus stop or you could be in a cafe. I wear my badges and that can start a conversation. It’s that personal contact, when you can drop in the need to check about cancer, to talk about issues that people don’t like to talk about. I do it in a different way than having a clipboard with lots of questions. If you just have a chat in an informal way, I think people engage more; you can mention the word: cancer. We need to reduce that stigma and really get people talking more openly about it.

You always hear of somebody who’s gone through cancer and it’s been negative, where they’ve lost their life, but there’s a lot of people now actually surviving cancer. The more we can get the message out there about how you can live well with cancer, as long as you get it early, then it is a real way forward. 

I also support people who are living with cancer. People sometimes don’t know where to turn if they get diagnosed. If they know that there are Cancer Champions to talk to rather than family it can help. The majority of people don’t want to talk to family, because they’re frightened of upsetting them. We can turn it on its side and do something positive. There’s so much out there for people to be supported with. They don’t always know, so it’s getting that message out, about what’s available in the community once somebody is diagnosed.

A018010-R1-15-15A.jpg
A018010-R1-13-13A.jpg
Cancer-champs-Angie4.jpg

We need more people in our communities to be Cancer Champions. I know we’re not going to be experts in the field, but I think that’s not always that what people need. Sometimes it’s just somebody to talk to or just someone to offload their concerns to. 

I would encourage people to become a cancer champion. If you can help others to overcome what they’re going through, or if you could be that person (who they know) that they can rely on just to talk to, then I would encourage it. It will help people to get that diagnosis early or to get to the doctors to check it out. Having those meaningful conversations could be a part of your everyday life.

A018010-R1-27-27A.jpg

Phil

I am on a mission, linked to how I came to be diagnosed. A friend of mine, who I had worked with for thirty odd years, was diagnosed with prostate cancer. At the time, I knew nothing about prostate cancer whatsoever. His advice for me was to go and get checked. Doing this effectively saved my life. Without that advice, I wouldn’t have got a PSA test for prostate cancer and consequently my cancer would have developed.

Would I be here now? Well we’ll never know; but the likelihood is if I was still alive, I would be in a different place with the cancer. 

Once I found out that my mates at home knew sod all about it, I decided that I would do something about it. I had spent a lot of my life standing up on my legs talking to people. And so, I decided to put it to a different use, simple as that. 

If you don’t detect the cancer early and it becomes advanced prostate cancer, there’s only one thing that’s certain: you’re going to die, sadly; not to mince my words, but that’s what’s going to happen. If you catch the cancer early, then you can do something about it. It’s like all cancers, early diagnosis is good, but with a cancer which doesn’t show itself in 80% of the cases, then you’re struggling. The only thing you can do really is to have some form of checking and testing. 

Cancer-Champs-Phil-2
A017874-R1-29-7A.jpg

When I give awareness talks my feeling is that I’m giving men the knowledge to be able to make a decision about whether they get themselves checked out or not. No one else is going to do it.

I love talking to groups of people to raise awareness. The biggest audience that I’ve talked to about cancer was two hundred. I’ve done lots of sessions. Sometimes it is with a big audience, other times a lot smaller, only a handful of people. It doesn’t bother me. Getting the message out there is the important thing, getting people talking about it. You get a buzz in the corridors after the talk, or they will be talking about it in the vans on the way to work. 

The most important part is telling your own story. People become more interested because it’s you the person. And that is so important. And humour. They remember the little jokes about the latex gloves and all that kind of thing. They’ll take it away. And they’ll remember these things. You hope that perhaps they will take it out amongst a few groups who’ll then spread it wider. You can spread the word. These guys might talk about it with other people they go to the football match with, people who they go to the pub with, play darts with, or their family.

Raising awareness of cancer makes me feel good. It makes me feel that I’ve done something useful. I go to some nice places, I meet some nice people. I quite enjoy talking anyway. And I feel like I’m doing a bit of good. So all in all, you know, you get a good feel from it. 

A017874-R1-30-6A.jpg
 

"If you can save one life by talking about cancer, because people are now aware, then it’s been worthwhile." 

 

Cancer-Champs_Richard.JPG

Richard

I knew nothing about the prostate and I knew nothing about the cancer. It was just just an off the cuff remark at my medical MOT. I just mentioned to the doctor about my nocturnal trips to the toilet and that started the ball rolling. I had a PSA test. I then had another PSA test a week after that. And it ramped up, it doubled in a week.

Cancer-champs-Richard2.JPG

I’m on a crusade really, just to make people aware of what the prostate’s about. I was lucky, it was caught at an early stage. I’ve been treated. I was diagnosed in 2010, and I’m sat here today. I like to say that there’s a mammogram, but there’s no prostate-o-gram. We need to raise awareness of checks. I think sometimes going to the doctor freaks people out. You’ve got to be open with men. Because men, are insular, you know. Head in the sand sort of scenario. You have got to really make them open up. You’ve got to create a relaxed environment.

One guy I spoke with told me he had an enlarged prostate. So he knew what a prostate was, probably didn’t know where it was, but he knew he had an enlarged one. And then he told me that his brother had prostate cancer, and he said, what do I do next? I says, well you go to your GP and you discuss everything surrounding it and how it’s affecting you, and what to do next, and then you insist on a PSA test. But you’ve got to talk to the doctor first, you know. You can’t go in and say I want a PSA test. You’ve got to talk to the doctor, discuss the surrounding implications, especially your brother, your family, and then go for a PSA, and that was it. He went away happy. 

If you can save one life by talking about cancer, because people are now aware, then it’s been worthwhile. 

cancerchamps-richard3.jpg

Cancer-champs-Lydia.jpg

Lydia

Last year in November I found out that I had a rare form of womb cancer. I was put on hormone treatment for four months. That basically put me in a menopausal state, hoping it would shrink for two years but it didn’t, so I had a hysterectomy the day before my twenty-fifth birthday. I was in hospital for my birthday. 

Most young people I’ve talked to were diagnosed really late on, because they were seen as too young to get cancer. Young people don’t have as much awareness about cancer. If young people get ill or if they get symptoms, they never in their head think that it’s cancer. I want to raise awareness, especially of women’s cancers. A lot of women’s issues, like bleeding and stuff like that, get ignored. If you go to a doctor and say, I bleed heavily, then often they just say that you are fine, or put you on the pill and it doesn’t go any further.

Sometimes at the doctors you have to ask for things, you don’t get offered them. So I was aware that all of the things that I had managed to get for myself, most people wouldn’t know about, or they might be struggling too much to have the inclination to get in touch with charities and the support available. If you don’t have that knowledge and the experience of how to do it, you can just be left with nothing. So that’s why I like to share experiences and talk about what’s out there for people. 

Cancer-champs_Lydia2.jpg
A017582-R1-26-27A.jpg

I felt the whole way through that a lot of the support that was available from charities and doctors was always just leaflets or websites. There was rarely anyone physically that talks to you. You’re just kind of signposted stuff to read, which I never do. It’s just like, ‘oh, thanks, chuck that in the bin. Waste of paper’. 

I think it makes a big difference when it’s peers talking to each other. 

I found that a lot of people I talked to along the process weren’t good at talking to a younger person. So they just didn’t really connect with me on my level and it just felt like they were used to talking about cancer with someone way older. It just felt like that here was a really big gap. Especially because what you do go through when you’re young is different, like fertility. And your life’s in a different place. I was buying a house when I got diagnosed. I’d just bought a house, I don’t have any savings, so time off work was a worry. There’s loads of things that were completely different for me that I felt wasn’t covered. So that’s why I like to write about the things that young people go through when they have cancer, to show that different side of it. I am trying to raise awareness of the symptoms and the issues that people go through, where there’s gaps and where support and services need to be improved. 

Cancer-champs-Lydia-main.jpg
A017582-R1-29-30A.jpg
 

"I think it makes a big difference when it’s peers talking to each other. " 

 
Cancer-champs-Tony1

Tony

Health and wellbeing is important. I don’t think there’s enough initiatives around for it. There is loads of information about everything. But a lot of that information is irrelevant. If people can’t read it and understand it, then it’s of no use to them. And some of it is kind of alienating to people, because it might not make any sense to you. 

I’m going to tell people it’s better to be healthy than not, all day long. And I’m going to tell people to go to the doctor, all day long. I’m flying the flag for health and wellbeing. I will continuously do that all the time.

I think you’ve got to make light heart of it and show people that checking for cancer is for the benefit of their health. My thing is that it’s better you know, than you don’t know. We kind of throw cancer in the mix of all the other things as a health and wellbeing thing. This way means we can get it over to people a little bit more, rather than just focus on this cancer thing, because cancer is a bit of a scary monster on its own. It we talk about it as just your body, prevention, doctor, check-up, regular MOT, then it can take away the fear of being checked up. So rather than telling people go and get checked out, because you might have cancer, it’s that you are going to get checked out so that you know that you’re okay. I often link with the doctors, because people have got some anxiety about going to the doctors for a check-up, I’ll go along with them, just to get that initial crossover.

We try and make talking about cancer as casual as possible. We talk about it more as a fun thing than a serious thing. We’re not medical practitioners, so we can’t come at it from it from a medical point of view, so we try and make it light-hearted. We have a slogan for bowel cancer, where every now and again we do it and we have a laugh about it, telling each other to sort our shit out, to check it out. A Jamaican might want to check his shit out because it’s not a big deal to check, because sometimes they do look and they think ‘how did that get out of me, you get me.’ But different people in different communities might not do that. We’re adding that comical thing about it, so it’s not all doom and gloom and scary.

I’ve been in conversations where people are encouraging others to go get checked. I’ve sat in pubs where I’ve heard man talking about him going to get his check up and I’ve seen it that way. There’s a lot more is going on than we probably think. I am glad that people are running around encouraging each other to take up a healthier lifestyle. It’s important that everybody who’s gone for a check up should encourage somebody they know to do it. It is not just one person’s job to spread the word. Being healthy is a daily task. We need to promote being healthy more often in our communities.

Cancer-champs-Tony3.jpg
A018315-R1-32-4A.JPG
A018315-R1-35-1A.JPG
 

"We try and make talking about cancer as casual as possible. We talk about it more as a fun thing than a serious thing. We’re not medical practitioners, so we can’t come at it from it from a medical point of view, so we try and make it light-hearted. " 

 

Cancer-champs-AliyaJPG

Aliya

In 2013 when I was working on a health and well-being project, I came to know that the health inequalities in the north of Trafford are great compared to the rest of the borough. In terms of life expectancy, people in north Trafford live ten years less than the affluent areas of Trafford. I thought that our organisation can do something to contribute a little bit towards closing that gap. 

Cancer-champs-Aliya2.JPG

One of the factors that cause health inequalities are due to cultural differences. For example, with some people in Asian communities, if they have an illness, they do not want to share it with anyone. It is something they want to keep to themselves. So we can begin to tackle this, by passing on the healthy messages and challenging the myths and thoughts that might stop people from getting checked. Doing this makes me feel proud that we are contributing something to save people’s lives. 

Community groups can play a role in addressing health inequalities. The Voice of BME Trafford started a project where we were sitting in doctors’ surgeries and making telephone calls to the patients about coming in for a check. That really made a difference. We ring up patients directly and discuss with them the importance of coming in, and we do so in the community language that they understand. We also address any barriers there might be. For example, we came to know that many women mix up cervical screening with checks for sexually transmitted diseases. Some of these things are cleared during the conversation that we have. One to one conversations have started to shift quite a number of things. By us making telephone calls from the surgeries, the rates for cervical screening for the whole of Trafford has shifted and Trafford is now amongst the best performing areas in the whole of England.

cancerchamps-Alyia3.jpg
cancer-champs-Alyia4

When the conversation is coming from a volunteer, it is different in that the volunteer can often relate more to that person. The knowledge is brought down to the level in the community. For people in the community who might have a reading age of a year eight, or cannot even communicate fully in English, then you have to make it easier for them to understand. If you’re from the community and can talk to them on that level, then it has a better impact. We are eradicating their communication barrier. Cultural knowledge is equally important. If a volunteer has a cultural knowledge that they can bring together with the knowledge of what cancer is all about and how can we prevent it, then we are able to break it down in way that is easier for a person to understand.

The Cancer Champions is a movement that has just started. It is in the initial state, but if we can recruit more people, then it will create a ripple effect in the community and nationwide. More people will be aware of the signs and symptoms. So this means that early detection, or early intervention, will be more common. It will not only help people themselves, but also help the NHS. The benefits of it will be phenomenal. 


Cancer-champs-Jas.JPG

Jas

It’s good to know that you’re helping people out and doing something good. If people are catching cancer earlier then they are going to live a better life. They are going to get treated early, and so then they are not going to have the same troubles.

I volunteer with the Voice of BME Trafford and make calls from the doctors surgery, encouraging people to get a check up. I update them to say why I’m calling them, that it’s a general call because they’re due a check-up. If they’re kind of hesitant on it, then I explain why it’s important and make it so that we can support people to overcome any barriers they have. For example, we can say if they don’t want to come on their own, then they can bring someone with them; or if it’s a time of the day that they can’t do, then we find a time that suits them better. We do this to make sure that they do come in and get checked. 

Sometimes when it’s a doctor having these conversations, they might use really technical terms. Because I’m not as technically advanced as them, I use language that people are able to relate to. For example, I quite often call up for cervical smears. I know it can be quite an awkward thing to talk about and to have to come in for. So I think about being able to offer the patient what would make myself comfortable. I think that they would probably be able to relate to that. And then if they do feel comfortable, then they’re going to be coming in and being checked.

Cancer-champs-JAs2.JPG
cancerchamps-Alyia3.jpg

There is a lot of potential for Cancer Champions to have a big impact. If coming in and getting checked is just pushed clinically, people can get scared of cancer, where you only really go to the doctors if it’s something you know is wrong with you. So it puts a big cloud over it, like a big rainy cloud. Whereas if everyone’s just getting tested, then it becomes known as an everyone thing, that it’s just the normal thing to do. If it’s normal, then you’re not scared of it. And if people are not scared of it, a lot more people will catch it earlier. If it’s normal then you’re not going to avoid it, because everyone else just does it, it’s just the norm. Doing this will mean that the whole problem is going to be minimised, it will become as small as possible.

cancer-champs-Jas4
Cancer-champs-Juanita1

Juanita

I’ve been a volunteer for many years at Wai Yin Chinese Women Society. The founder of Wai Yin was a good friend of mine and she passed away because of cancer. I feel emotional when I think of her. She was a very devoted person to community work. She passed away at a very, very young age, about forty years old. So I felt I need to do something for her. 

Many people from the older generation in the Chinese community either can’t speak English, or they have limited English. And they feel isolated, because they want to talk to somebody, but there is nobody they can talk to. We train a group of Chinese speaking volunteers to have a good listen to people, and to be able to provide support. The volunteers provide emotional and practical support for people who are affected by cancer. We can help to lift people up. We do many things - for instance: cleaning in the house; we can cook a Chinese meal for them; if they’ve got a garden and they want it tidied up, then we can help them in this way; we do some shopping for them. Or you could have a dog, we can take a dog out and walk with the dog. This sort of thing. People feel less isolated, and they feel that they are being supported and valued.

Cancer-champs-Juanita.jpg
cancer-champs-Juanita3.JPG

Cancer Champions is a great, great idea. It is really, really good. It is involving people from all different communities. As soon as I heard about it, I thought we should definitely get involved. Most people will hear the word cancer and think it is a death sentence, But in reality nowadays, if you detect it earlier, it can be prevented. Cancer Champions is a jolly good idea - we can bring awareness to people that really don’t know a lot about cancer and Cancer Champions can help the prevention of cancer.

cancer-champs-Juanita4

Cancer-champs-IrfanJPG

Irfan 

My motivation is the community itself. We are seeing people that are mostly from different backgrounds, from different countries, different cultures. And for them their faith, the different traditions, the place they are born, everything matters a lot. Many people actually don’t speak about cancer. They never use the word cancer. What they say is horrible disease. Or horrible illness. So they never will use the word cancer because it’s kind of a taboo. So people try to keep it to themselves or just in their family. When it is in the late stages, when they can’t hide it, then they start talking about it. I think it’s important to talk about it because there are so many services available that people need to know more about it. 

Cancer-champs-Irfan2.JPG

We need to do something for the community and start conversations: use this word cancer so that people are free to talk about it. And when they are free to talk, they will be able to know more about cancer, how they can prevent it, what are the services available, what are the services not available, and what else they can do. It’s all about communities talking about it rather than hiding it. 

We need an army of volunteers who can take this message out. It needs to be started somewhere. So what I did was set up a Health and Social Care Ambassador’s group at the Salford Clinical Commissioning group. The volunteer ambassadors are from the different communities, and they speak different languages: Urdu; Punjabi; Arabic; Farsi; Swahili; and many other different languages. They go out into the community and talk about cancer. They take it out deep in the community. The volunteers are from those communities, and so when they speak freely about cancer, they are able to discuss it openly. They talk about the different services that are available, and what can be done to prevent it. So rather than waiting for first, second or third stage, they can talk about it early and how people can first of all detect the cancer.

Talking to people and taking that message out deep into the community, is so important. People presume that if we have got a leaflet or an article which is in Urdu or Punjabi, then the people will read it. But there are many people who can’t even read their own language. They can speak, but they can’t read. So that’s why speaking face to face, one to one, is the best way of reaching out to the people. People talking to people, community talking to community. It will make so much difference.

cancerchamps-Irfan3.jpg
cancer-champs-Irfan4

Cancer-Champs_Liz.JPG

Liz

I’ve done the Veg Pledge in November. It is something that I saw on the Cancer Research UK website. It’s about being vegetarian for a month. Rather than doing some sort of exercise or activity that a lot of people do to raise money, I thought that this is quite a good challenge for me because I do eat a lot of meat. And it is something that I can fit into my day. It’s about raising money for a good cause, but also as part of being a Cancer Champion, I shared it on social media to raise conversations. 

Lots of people have asked me about why I’m doing Veg Pledge. It’s a conversation starter. I see myself as a bit of a Cancer Champion through digital channels. I think that’s one way where we can reach a lot of people, as well as having conversations with family and friends. I shared a few prevention aids, explanations of why I was doing it, what it means to me, that sort of thing. So I was able to raise a bit of money for charity and show my commitment to being a Cancer Champion across Greater Manchester. 

Cancer prevention is something that’s touched the lives of a lot of people. My mum’s had breast cancer. She caught it early, luckily, and is still here. She had the operation to remove the lump and radiotherapy but she didn’t need any chemotherapy or anything like that because it was detected early. So I feel quite passionate about people going to their cancer screening appointments early. Get in, get them done, because you never know what you might find. And if you can get it early there is so much support in place. The NHS has all these amazing services that are free to people across the UK, and so people have an amazing chance of a recovery, rather than them ending up in A&E with loads of signs and symptoms.

My Nana died of cancer when I was in year six. She must have ignored signs and symptoms for months and months and months and by the time they found it, it was the size of a grapefruit. It was literally within weeks she died. So you know, she must have had loads of signs of symptoms and never done anything about it. That’s the difference in someone who’s being proactive like my mum, who has gone for their screening, had a little niggle, found out what it was, and then has recovered reasonably quickly and well, without having too much invasive treatment, compared to my Nana who’s died and then not seen her grandchildren grow up.

Cancer Champions have the opportunity to really change the way people have discussions about cancer. It’s about saving lives. Having a really simple conversation could result in a massive achievement.It could be something really small and simple that someone says. This small and simple conversation could save someone’s life and stop them going through cancer, not to mention, their family and friends.

Cancer-champs-Liz2.JPG
A017874-R1-11-25A.jpg
 

"Cancer Champions have the opportunity to really change the way people have discussions about cancer. It’s about saving lives. Having a really simple conversation could result in a massive achievement." 

 

GM Cancer Champions is supported by, amongst many others, the Greater Manchester VCSE Devolution Reference Group and is part of their commitment to ‘eradicating inequality in a generation’s time’. 

Research lead: Dan Silver
Photography: Joe Entwistle
Transcription: James Clarke
Graphic design: Dan Farley
Commissioned by VSNW