Living with and beyond cancer
Raising awareness and supporting others
After having cancer some people feel they want to support other people with the same type of cancer or campaign to raise awareness of the condition or improve cancer services.
It is common for people who have been through cancer to say that they would have liked an opportunity to speak to someone early in their journey who had been through the same thing, but that this had not been available. Although cancer is still considered a taboo subject by some members of the public, people who are living beyond it often feel comfortable talking openly about their experience to strangers as well as friends and family. Many we spoke to had therefore made it known that they would be willing to speak to other patients who would welcome the reassurance of meeting people who had recovered from cancer and could address some of their concerns.
Talking openly about her ovarian cancer has helped her to come to terms with it; she has offered to talk to other women who have it because she would have liked that opportunity after her diagnosis.
Talking openly about her ovarian cancer has helped her to come to terms with it; she has offered to talk to other women who have it because she would have liked that opportunity after her diagnosis.
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I think talking about my experience has all helped me as well to come to terms with it, and I have no qualms about telling anybody that I had cancer. And if anybody through any of the charities that I'm involved with, or organisations, feel that they want to talk to somebody, I'm willing. I know it’s not always possible to compare feelings because everybody is an individual and they're different, but I know at the time when I was diagnosed I would have liked to have talked to somebody who had been through the same experience.
Talking to someone who had been through cervical cancer before her had been the most important thing that happened to her; she has since helped other women with cervical abnormalities.
Talking to someone who had been through cervical cancer before her had been the most important thing that happened to her; she has since helped other women with cervical abnormalities.
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Is there anything else that you would say to other women who are going through this, you know how to…?
I think personally being in contact with somebody else that had gone through it was a huge help to me. Particularly finding somebody so young that it wasn't something that was that rare. I've since found, and lots of people have spoken to me when they've had abnormal smears, and some people, two people I know have had cone biopsies, and it's been great to be able to provide that support to them. I think it's just being able to have a conversation. Books and information, it was helpful, but at the same time it was also quite scary because you couldn't have that two way dialogue, it was all about how it could be, and the danger for me certainly was that I could take myself too far beyond it. And I think, yes, the most important thing that happened to me was being in contact with somebody who'd had a similar experience.
Some people had provided this kind of support informally to friends or colleagues with cancer or to friends of friends. Others provided support to strangers through their hospital or by joining a charitable organisation, many of whom run telephone helplines or befriending schemes. Some hospitals and charities only allow people to support others once they have recovered from treatment. Not everyone who wanted to support new patients had been able to yet, often because their type of cancer was rare. One man said that the wife of a friend had phoned him about his testicular cancer diagnosis but that the man himself hadn’t wanted to talk about it.
Knowing that he'd had testicular cancer, a friend asked him for advice about a lump on his testicle; he also talked to a friend's mum about her breast cancer.
Knowing that he'd had testicular cancer, a friend asked him for advice about a lump on his testicle; he also talked to a friend's mum about her breast cancer.
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But more particularly a really close friend of mine called me up quite recently, in the last 2 years in fact, in the last year and a half, and said, "I found a lump, what do I do?" And I automatically said, "Well, you know, just go to your GP first of all, it probably will be nothing but just go", which he did, and he had exactly the same brush off as I did. And we're talking, you know, 12 years down the road. You'd have thought that perhaps people might pay a little more attention now, but no, brush off came, but because he knew what I had gone through at that first brush off, he said, "No I'm not happy with this, please send me for tests". And thankfully he did go for tests because it did turn out to be testicular cancer. So, you know, even that one person learnt from what I had gone through in fighting to say I want that test.
You saved a life.
Well, yes possibly, but yeah it's, today if somebody talks about it I'm happy to talk about it. I've found that a friend's mum who'd had breast cancer, even though it was a completely different part of the body and it was a different generation, I was able at some stage to talk to her and say, "Well, you know, this is what I went through, I know it's a bit different but, you know, if ever you want to talk about it you can". And she did and we developed a particular bond and it was really rather nice that she was able to discuss this with me because we had shared something in common.
After recovering from colorectal cancer treatment he joined the Ileostomy Association and visited patients in hospital before their stoma operation to give them encouragement and reassurance.
After recovering from colorectal cancer treatment he joined the Ileostomy Association and visited patients in hospital before their stoma operation to give them encouragement and reassurance.
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And from that I’ve been so thankful with having this operation and the success of it that I joined the Ileostomy Association and I was a hospital visitor for quite a few years. And I found that very satisfying because I could just tell people who were going to have this operation' ‘I’ve got one. I’m like you now, but I can do this’. I never said, I never told them any medical things about it, just the fact I’ve got one, everybody’s different and it might affect them in a different way, but with me I can go scuba-diving, I can go sailing and I go skiing. In fact my life is more full now than it was ever before. I’m probably fitter now than I was before because of what I’d had happen to me.
And for quite a few years I’ve been a, I’ve seen different people in hospital; I hope I can help them. Lots of people have changed their opinion of being, having this horrible operation, it isn’t as bad as you think it is, nowhere near as bad. You always think it’s going to be, you’re the only one' why me? And, everybody gets that, but in the end you come through it and you’ve seen somebody who’s got it.
As opposed, you’re told by a medical person that, ‘Oh yes, you will be OK’, and you think, well yes, you say that but you haven’t got it have you? But when somebody stands in front of you in a lovely, a little trouser suit with not a bulge showing anywhere, I mean that gives you a lot of confidence.
Glynis was told to wait until she had recovered from her breast cancer before offering support to other patients at the hospital, but when she had recovered she no longer felt like doing it.
Glynis was told to wait until she had recovered from her breast cancer before offering support to other patients at the hospital, but when she had recovered she no longer felt like doing it.
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I definitely feel I can understand what people are going through but I don’t actually know anybody. I know of people who’ve had it in the past and I can sort of empathise with them now and didn’t realise what it was like, but I’m fortunate enough at the moment to not know anybody that’s going through it. I’m trying to think, maybe there’s been one or two over the years that I’ve talked to, but I did feel at first, in fact when I was going through my treatment I talked to the Macmillan nurse and I said, you know, “I’d like to help at the hospital. I’d like to come in and help, talk to people who are going through it”. And she said, “Well, when you’re better we’ll do that”. And then when I was better I thought, “No. I don’t want to go there. I don’t want to go back to that. I can’t bear it. I can’t face it. I just want to move on”.
Joining a local cancer support group was another way in which people could support others. Some joined during their illness, others waited until they had recovered. Local groups are not always available, particularly for rare types of cancer, so some people started their own, often with help from professionals. Some groups did fundraising or awareness raising activities as well as peer support. One woman started a local group for women who had cervical cancer but the demand was so great that it soon began providing telephone support to women in other parts of the country. A man started a local leukaemia support group but it folded after 3 years due to poor attendance and the death of some participants, but in that time they published a booklet about their experiences for other people.
She had ovarian cancer 5 years ago; she knows of a local cancer support group that is poorly attended but found a very active group while on holiday in Devon and attends that whenever possible.
She had ovarian cancer 5 years ago; she knows of a local cancer support group that is poorly attended but found a very active group while on holiday in Devon and attends that whenever possible.
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Is there any kind of local support group at all for ovarian cancer patients?
There is a local support group here and it is held in the middle of the day in a church, and very few people unfortunately have supported it. I think it must be hard for the people who are doing the organisation to be doing it for many, many years and not have a better response. But it is difficult and by talking to other patients I find they shy away from gatherings like this.
My husband and I were down in Devon taking a little holiday and we saw an inaugural meeting posted up, ‘Please come and join us if you yourself are a sufferer or have cared for…’, and I did have a friend living down there whose husband was in remission and she was very keen to go along, and we went along and there was a very friendly gathering of over sixty people, and the committee had decided to order very bright cheerful sweatshirts with a smiling sun on the logo, and they organise all kinds of speakers once a month and then in the summer months when the weather is suitable they have social occasions. They go on river trips and go out for cream teas, and it’s a very, very lively group, and they kindly send me all their information, so if there’s any chance of getting down to Devon I try and go and join in because they’re such a cheerful group of people.
She felt isolated when she left hospital after ovarian cancer treatment; after talking to her social worker she and another woman started a local support group enabling women to share experiences.
She felt isolated when she left hospital after ovarian cancer treatment; after talking to her social worker she and another woman started a local support group enabling women to share experiences.
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Tell me about your involvement with your support group. Do you do it out of a sense that you want to help other people or do you get something back for yourself?
I think it’s a mixture of these two things. When I came out of hospital to start with I was getting support from the Macmillan social worker, and I quickly realised that apart from that I was very isolated. In hospital you’re quite cosseted, you feel looked after, you have people to talk to if you’re not sure what this ache or pain is, or what this feeling is. But when you’re out in the wider world the people you come across who have ovarian cancer, or even who, you know, who have cancer, are very limited. People don’t tend to go round wearing, as somebody said to me, wearing a badge saying “I’ve had cancer”. You don’t know. And your family can’t really empathise with how you’re feeling because they haven’t been through it, they don’t know what you’re experiencing and, you know, through talking this over with my social worker I realised that probably there was a need for something in the local area and nobody seemed to be getting up off their backsides and organising anything.
So, with his help, myself and another lady decided to meet up, and basically through this meeting opened to anybody else who was interested and we were amazed at the response. I think the group took off with great gusto and at some points we were having forty people coming along to a meeting, and the benefits are tremendous. You feel supported; you can share your experience with people who understand. I was fortunate in that one lady who came to the group had had ovarian cancer and she was two years further down the line than me, and it was good to see that, yes, you know, I can aim for that, I can get there, somebody else has got there before me. And she actually had had much worse ovarian cancer than myself, and it was good because some of the niggles I had, odd aches and pains, she also had experienced, it was good in that respect.
There’s lots of information available, you get tasters of complementary therapies, health professionals come along and talk, it’s all very interesting and informative and, as I said, it’s good to see people who have survived cancer and are still going strong. I’m also very conscious that I’ve survived cancer thanks to medical skill, and I’m quite happy to put as much back as I can, and if it’s going along to a support group and showing people that it’s not a death sentence, that you can live normal lives, you can have families and it can all be well, that’s fine. I can’t give a lot money-wise but I can give time, and that’s basically why I’ve become involved.
Another woman with cervical cancer, who had found no one locally to share her experience with, advertised in a national cancer charity’s newsletter and ended up compiling a book of several women’s experiences from across the country; the contributors formed a mutual support network and some of them met up once. A few people started a website to provide information and support to others. A woman who was one of the first people to take Glivec for chronic myeloid leukaemia started a website to share her story and inform other patients about this new treatment opportunity.
Some people said they had talked about their cancer experience to health professionals at conferences or training days to improve their understanding of the patient’s perspective. A few had acted as a ‘guinea pig’ for medical students, and one had been a clinical psychology ‘case study’. Derek had taken part in a film about breast cancer surgery. Others joined committees to influence health services delivery, increase patient participation in research, or raise the profile of their cancer type.
Since having leukaemia Neil has joined a national charity and talked to patients and professionals about his experience; he also joined a consumer research panel.
Since having leukaemia Neil has joined a national charity and talked to patients and professionals about his experience; he also joined a consumer research panel.
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The other thing that has come out of it is, and it really started from when I was in hospital, I mean I’d always given blood, which I can’t do now, for no other reason than it was good idea to do. I mean there’s no ulterior motive, it was, somebody had asked me to do it, I did it, ‘Yeah fine. Okay.’ And subsequently I’ve been introduced to Leukaemia Care because they provide support to the family as the patient is going through the treatment and for some period afterwards. When I was going through treatment I was wheeled out to speak to patients and show them that there was actually life x number of months down the line. I was asked to give talks to nurses, the patient’s perspective. Again, just putting it, and explaining, ‘You’re trained to do this but look at it from our point of view and what it is.’ I now feel it’s not relevant for me to do that because I’m five years post and the treatment’s changed. So my experience is not necessarily somebody else is going to be going through. But I’ve picked up much more on the charity side of things and got involvement there, taking the experience I’ve had and using it hopefully for some good, get involved in training and those bits and pieces, which I wouldn’t have done otherwise. So yeah, that’s a bit of a change.
And I got involved with consumer research panels, which were a pilot study to try and get more of the patients involved in research projects. And that’s been interesting because patients do have a perspective and clinicians sometimes don’t understand that. So again trying to use the experience, sounds altruistic, it’s not, not meant to be, but it’s trying to use what I’ve experienced and share it so that others can benefit if they can on that score, but going forward what will be will be.
Although discussion about cancer is more open nowadays, a few people felt angry about the way cancer is sometimes portrayed in the media. Some who had survived lung cancer said that showing poor survival rates for lung cancer in the media could encourage people to quit smoking before it made them ill but these portrayals were depressing for newly diagnosed patients. One said she would like to see depressing stories or advertisements about cancer replaced with positive stories about survivors. A woman with ovarian cancer was upset that the word ‘cancer’ was often used to describe something horrible.
It was widely recognised that the amount of information available to the public about cancer had increased over time, but some people felt that there was still not enough public awareness of their cancer type and its symptom recognition. This drove many to campaign for greater awareness or improved treatment. A woman with ovarian cancer had mounted exhibitions, given talks and written newspaper articles for a national charity; she encourages women to pass on information about symptoms to other women. Several men were trying to raise awareness of testicular cancer symptoms and encouraged men to examine themselves. Another was campaigning for better information provision in hospitals for cancer patients.
He runs a support group and tries to raise awareness of testicular cancer but finds it difficult to engage young men who think it will never happen to them.
He runs a support group and tries to raise awareness of testicular cancer but finds it difficult to engage young men who think it will never happen to them.
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There was one nurse there who has become my adopted ‘mum’, and I still see her today, who would sit by the bed and talk to me. She had two sons of her own, so she was always interested in testicular cancer. And it's down to her and me feeling the way I did that I now run the support group that I run and that I work so hard to make, to raise awareness of testicular cancer, to school children, offices, anybody that wants to listen.
I was at a youth centre this week and you can't force people to come and watch anything. I was asked to go and because it's a youth centre you can't force them to come, and nobody showed a blind bit of interest.
Really.
Nobody showed a blind bit of interest but that's because it's never going to happen to me. And they were 15 and, you know "I'm young fit and healthy". Unfortunately, as the leaflets that I left there say, it can strike at 15, so you're not quite as young, fit and healthy as you think you are, and that's actually one of the, and it's the faster acting cancer that gets you in the younger years. So by the time they've decided, oh we might go and sort something out, it makes the treatment a lot worse and they could perhaps die. And it would be such a waste.
Whilst there is a lot in the media about breast cancer in women, there is very little about breast cancer in men, which it does in small numbers. Some men were angry that most of the publicity about breast cancer only mentioned the disease in women and that information leaflets were often inappropriately worded for men. They wanted to be regarded the same as women with breast cancer and have equal access to treatment and support services. As a result they were campaigning to raise awareness of breast cancer in men and for improved information and services, but were frustrated at the slow rate of change. However, some progress had been made: Bill and David W had helped a breast cancer charity to produce a new information booklet for men and had taken part in the charity’s fashion shows alongside women with breast cancer. Bill said that in his area men with breast problems were now referred to the same one-stop breast clinic as women.
Derek made it his goal to raise awareness that men get breast cancer too; he found that information and services were all geared towards women and he was excluded from a charity fund raising run.
Derek made it his goal to raise awareness that men get breast cancer too; he found that information and services were all geared towards women and he was excluded from a charity fund raising run.
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One thing that I haven’t said was everything I picked up, even when I was in the hospital and I had the bag on, the drain, ladies had a handbag or something, I got a carrier bag. And so my wife being there, well she brought me a bum bag, and it fitted in just nicely, and we put that to them and said that’s a very good idea for a man. I felt out of place cos the women all have these bags. I had a carrier bag, and it was little things like that. I once went down to [name of village] and it was in a shop window, women, breast cancer. I went in and says could I speak to the manager, just thought, “I had that”, she says, “Yeah, I’m sorry about that”, she says, and in a lot of things I was reading, the same with the exercises, it was all for women, fasten your bra and stuff like that. I know men don’t have bras, but I don’t, it was all little things I was picking up on. Don’t forget there’s men as well as women, and I made that the goal. I wasn’t aggressive, I have every respect for ladies who have got all this. It was like, well, we went to the [name of group] one day, we’ve got a new… one of the ladies is sat down who’s in charge, we’ve got another lady now and I went to this meeting and my wife says that’s three times she’s mentioned all women and it is an all-woman action group, really. But I’m a man, and at the end of it I just went up to them just by myself and I says three times you mentioned ladies and just, I’ve had breast cancer. She said, “I do apologise”, and she says, “Next time I’ll make sure I don’t…” And if they don’t mention it, that’s what attracts me or gets me, to say, I’ve got to say, I feel as though I have got to say something. I’m not aggressive, I’m not, I just make my point – men do have breast cancer. And that’s all I try and get over. And as I say, I’ve seen it, have you ever looked at the papers? The Evening Post, there was a guy in there once had it. In fact, he came for an interview with me as well for the Evening Post, yeah. So as I say, I do try my best to make the other half as well as the ladies, cos it does happen. It does happen.
So how do you feel, this probably follows on from this, my next question is actually about how pink the campaigns are and how, you know, all the campaigns are pink. They’re very feminine and…
They are, but I’ve got pink shirts now. I do it, I go in pink shirts. I was annoyed at the Run For Life, in that I asked why are men, why can’t we join in? Why can’t men do it? It’s for ladies only. Why ladies only? That, I made my point on that one as well.
And what was the response you got back from that?
Well, they said there’s going to be one for men, there was one for men, apparently, but I don’t think it was in our area. Very, not as… outright as what the ladies are in most areas of England and Wales and Scotland are, there’s men who just… you do it off your own bat. They do have them but not in the same field as ladies do, which sort of upset me. It does upset me and, as I say, I just feel as though I do have to make a point. I don’t shout, I don’t bawl, I just make my point, and if they accept that, well that’s… I feel as though I’ve achieved something.
Some people’s involvement in voluntary work included fundraising for charities or for improved hospital facilities, because they wanted to repay the help they had received. Several had organised or taken part in sponsored events. Tim had sold his paintings in aid of charity. Others donated regularly to charity.
After having lung cancer he organised fundraising events for the Roy Castle Foundation and took part in a marathon himself; he was given an award for his achievements.
After having lung cancer he organised fundraising events for the Roy Castle Foundation and took part in a marathon himself; he was given an award for his achievements.
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Yeah, later on as I started to recover I heard, when Roy Castle, - is it OK saying that? Yeah – when Roy Castle was first diagnosed with lung cancer it was in the papers, the news broke on a Saturday morning. And I wrote a letter that day and the following week I think, the Thursday/Friday I received a letter back from him.
Now he was the first one to speak out because he was diagnosed, and he was told it was through passive smoking - the clubs. And I carried on corresponding with him right up until he died, and I wasn’t, he’d raised a million pound over the next year and so, and then he threw his lot in with the, to form, formed the Roy Castle Foundation.
And I decided that I would raise some money, so I organised a sponsored walk up Snowdon, which was quite a challenge. And he came to Liverpool for the launch of The Roy Castle ‘Cancer’ Appeal and I met him at St George’s Hall, and I met him several times after that and I told him I’d stick with it until the Roy Castle Foundation was built, which I’ve seen done and more.
And that particular day we did the Snowdon walk two hundred and fifty people came along and it raised £25,000 on the day and there were loads of cancer patients on it, you know, and I made some lovely friends. And we’ve done several more walks after that up Snowdon, we’ve done walks through the Mersey Tunnel. I’ve done numerous charity nights with the, all hard work but well worth doing. We’ve done sponsored walks through, from Southport to Liverpool, twenty miles.
I actually walked along the marathon, which was amazing, I was dehydrated at the end of it and I was standing in Euston Station to get a hamburger and try to get some change to phone my wife - I was on my, down there on my own - and then I just felt my head swimming and I collapsed onto the floor, and I’ll swear to God people just stepped over me and got their hamburgers. And I lay there till, I had this London Marathon t-shirt on and some of the people who’d done the marathon recognised it, came over and got me a paramedic and I eventually got home, you know. That night I swore to God I was finished with it forever.
And the next day I was out on a, chaperoning someone, a lung cancer’s wife, he’d died, her husband had died, to, Freedom of the City was given to Roy Castle posthumously, I took her to this show. And then I carried on from there, involved in everything.
You’ve obviously done a lot of wonderful work.
Yeah, but I mean I’d say it’s not, I’m just a do-er, it’s not everyone’s cup of tea to do that, you know, and I think basically its sort of, draw strength from your family. That’s…
You’ve met Prince Charles as well.
Yeah, I was nominated along the way for a few different things, and in October of this year I was nominated through the national newspaper for an award and I was invited to Highgrove. And I went down there to see him, and he was smashing, he was fine, he was perfect. There was other people as well, all different types of awards for different things, not only illness, and we had a tour round the gardens and that, you know, and I invited him to come up to the Roy Castle Foundation, which he said he would do. So we’re just waiting for that to happen!
Last reviewed October 2018.
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