The women we interviewed had found support from their families, friends and work colleagues, the health professionals caring for them, local and national cancer organisations and support groups, their spiritual faith, a counsellor and from other patients. We examine here both good experiences and others where for some reason women had difficulty getting the support they felt they needed.
Most women said the support they had received from their family, friends and work colleagues had made an enormous difference to them. Many felt it had enabled them to cope with their illness and had led them to value these relationships more. A few mentioned that sometimes this support had been overwhelming or difficult to adjust to or they had found it difficult talking to family members about their concerns.
She explains how she felt reluctant to talk about her concerns because she didn't want to worry...
She explains how she felt reluctant to talk about her concerns because she didn't want to worry...
Age at interview: 46
Sex: Female
Age at diagnosis: 36
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It was a very strange thing at home. Although I had a lot of support from friends and family, we would say a lot without talking about the issues. I felt I couldn't say what was going on in my mind because I, regardless of what I was being told I still felt that they might not be telling me the truth. It's a what if syndrome, what if this happens, what if that happens, what's going to happen to the children, what if, what if, what if, and so on and it's very difficult, very, very difficult. But there was nobody I could say that to without at the time me thinking well if I say that they might think I've been told something more than I have, that will get them worrying more. And it's a vicious circle and likewise they wouldn't say anything to me in case it upset or worried me. So there was this, it's a conspiracy of silence, all for the best of reasons, everybody trying to protect everybody else but by the same token there is absolutely nothing that anybody could have said to anybody else that would've made the situation any worse than it already was. But when you go through it you can't see that.
Quite often women found that they were the ones supporting their family members because they were worried about them and wanted to protect them. Others felt they did not need support and preferred to deal with their illness on their own.
Despite being surrounded by support from family and friends, several women described feeling very alone. Some women had contacted national cancer organisations and found it helpful to talk to trained nurses about concerns which they did not feel able to share with family or friends.
She felt alone despite being surrounded by support from family and friends.
She felt alone despite being surrounded by support from family and friends.
Age at interview: 37
Sex: Female
Age at diagnosis: 32
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It almost takes you into your own world it's, and I think I probably felt quite isolated, just the fact that nobody else can really help, nobody else, it's happened, it's just happening to me. I had loads of support of my friends, and my family were told at that point because obviously just going in to hospital quickly. I think my husband felt that they needed to be told so they came and gave me lots of support too. But it's just not quite the same and you're aware as well, I mean I was always very jolly and very strong for everybody else because I didn't want anybody else to worry really. So I think I probably kept a lot of it inside even though I know they were offering support and they were offering to sort of help, I didn't want to make them worry and I didn't want to sort of put my concerns on their shoulders. And that I'm sure is when I managed to find Cancerbackup and that was brilliant because it was somebody completely dispassionate that I could just, just ask really daft questions and ask things about me rather than just reading about the facts.
Several women had not contacted a support group or organisation because either they were not aware of them or felt they did not need this type of support. Others had contacted these organisations for information leaflets which they had found helpful. A few had contacted national organisations for support on the side effects of their treatments (see our Resources and Information page).
Finding the right source of information and support can sometimes be difficult. One young woman who found it difficult to talk to her boyfriend was helped by talking to an older woman who had been 20 when she developed cervical cancer and to others in a support group where she felt able to share her experiences. Another found the Samaritans supportive. A third explains why she had found her local Oncology Centre very helpful.
She explains how it was difficult to talk to someone she was close to and why she found a local...
She explains how it was difficult to talk to someone she was close to and why she found a local...
Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I find it very useful because there was some, there was a lady there and she had cancer when she was 20 and she's now 55 and she was still there and fine, you know. So for me at the time it was like hope. Because I was feeling I was going to die any minute and met someone with cancer long ago was there was like yes there is still hope. And its just talk because your partner can be very caring but you can't talk, men especially, you know. My partner, he's afraid to talk. Its like when I mention cancer for him its like, he tries to change the subject and sometimes I feel like talking. Not, now I don't feel I talk so much but at that point when I was feeling really depressed I wanted to talk about cancer. Once I decided to plan funeral, so I was telling my partner what I want and why and he didn't want to listen and I just said you have to listen because that's what I want to talk. And I realise it was painful as well for him. But at the group I could talk these things with everyone because everyone was going through the same or had been through the same. So it was good, this group helped me quite a lot. And they had professional help as well, while the other group was just voluntary help. This one was professional, there was a nurse, there was everything there, there was a psychologist there if you need to talk.
She found her local oncology health centre beneficial.
She found her local oncology health centre beneficial.
Age at interview: 43
Sex: Female
Age at diagnosis: 42
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But I think, well surely, there must be some other tests, and it has been worrying me. Soin my area there's an Oncology Health Centre. And by accident I sort of found out about it and I've been going there and only last week I went to see the nurse and the medical doctor there who gives advice. I was asking them about the tests and other things. And its, it's really good that the area I'm in has that facility because I think its quite rare. Its really been beneficial. It's a drop-in centre where you can go any time, you don't have to make an appointment. You can ask medical questions, you can seek medical advice, its not just counselling and the people that you see know what its like to have cancer, they speak to other people. They can give you specific advice, not just tea and sympathy and treat you seriously. I found that really helpful and he said 'Well go and ask your doctor about the regular checks and we'll also find out more for you.' So I'm going back again and they're going to find out certain things for me.
Several found that talking to other women who had a gynaecological cancer had helped them to realise that their feelings or concerns were not unusual. These women explained how the friendships they developed with other women who had cervical cancer had made an enormous difference to them.
She found it supportive talking to other patients.
She found it supportive talking to other patients.
Age at interview: 34
Sex: Female
Age at diagnosis: 32
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Its like I said, each time I've been in hospital all the ladies that have gynaecological cancer, some are of the womb, some are ovarian, some are cervical or whatever. But when they find out that somebody else on this ward has it, they tend to gaggle together and I would say that that is a good thing. You really do need to talk to other people because they understand even better than the doctors and the nurses and even their own husbands, you know, lovers, whatever. Do talk to them, that is how I made friends with [friends name] which is the lady that you've already met and we, probably are best friends now. We don't so much socialise for anything other than our health but we do go to appointments together and phone each other up when we're worried. And we're so close, what happens to one happens to the other and it matters, it's made a big, big difference. So certainly talk to other people, most definitely.
Health professionals not only provide medical care but have a role in the emotional support of their patients. Acts of kindness or understanding shown by doctors or nurses made a considerable difference to many women. In comparison one woman who had not received any immediate emotional support after her diagnosis explains how she felt very unsupported and alone.
She felt well-supported by her GP and consultant.
She felt well-supported by her GP and consultant.
Age at interview: 36
Sex: Female
Age at diagnosis: 27
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My doctor was fantastic I have to say and a couple of times she would phone me and say 'I haven't spoken to you for a while, I haven't seen you, is everything going OK? If there is any time you want to talk,' she said 'I've advised all the doctors in the practice, they all know of your situation and you can come and see us at any point.' So they were very supportive and I did feel that I could with anything, any ailment and I wouldn't be pushed away as saying I was wasting time. I don't think I ever did that but I remember going to see my doctor just after with my husband and they put us forward for stress counselling, they thought that maybe we would benefit as a couple to talk about my experiences and how it had affected us and how to manage the future. So that was through my GP as well. And I also had, my consultant was there too, he had given me his private home number, I could call at any time. He was very supportive. And I didn't feel that I was wasting their time. They were just there for me really; they were fantastic.
She felt she wasn't given any support by the health professionals when she was given her diagnosis.
She felt she wasn't given any support by the health professionals when she was given her diagnosis.
Age at interview: 46
Sex: Female
Age at diagnosis: 46
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and then I felt abandoned by them, that day, they just leave you, they tell you .'Sorry we're disappointed with the result' My God, he's disappointed, what about me?
And I just felt they tell you that thing without thinking about the human side of, of that person who has got the cancer, nobody phone here or nobody even say 'you know, 'Are you OK?' you know, not nobody. And I felt I had to deal with all that, then I worry about my family you know as well, how are they taking all this news.
A few women found the support given by the Macmillan nurses invaluable. Others felt they needed information rather than emotional support. One woman who had been involved in a clinical trial explained that the opportunity to chat with the research nurse had been of great benefit.
She found the support of the Macmillan nurse beneficial.
She found the support of the Macmillan nurse beneficial.
Age at interview: 42
Sex: Female
Age at diagnosis: 40
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By the time I got to the specialist hospital I'd actually been talking to the Macmillan nurse who they seem to attach them to most hospitals now which I think it's an amazingly good idea. Because they're kind of part of the hospital but they're not and they're all specially trained and it's just, it's just like having a different perspective. Rather than being just a purely medical perspective like you get when you talk to your consultant you know it far more takes in you know the whole you you know what's going on in your life and how you're going to cope with the ramifications of dealing with a cancer diagnosis. And you know I couldn't, I couldn't say enough in praise of them really because I think they're absolutely what you need in that situation because it does give a much more human A. because it's a much more human face to the medical service and B. it does actually feel like you know there's somebody on your side. I mean I know the consultant is on your side but it's in a medical way, it's not in a personal way. And I think the support that the Macmillan nurses give is much more personal support. I certainly would've found it a lot harder to deal with the procedures and with the, just with the general sort of decisions I have to make. I mean they don't make decisions for you but they just sort of support you in a way that neither the consultant nor your people at home can because they sort of combine the best of both you know in having medical knowledge but also having that sort of personal interest in the people that they're trying to help.
She explains why she found it beneficial to be involved in a clinical trial.
She explains why she found it beneficial to be involved in a clinical trial.
Age at interview: 38
Sex: Female
Age at diagnosis: 34
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At the time there was a survey which they were trying to look at, a link between the small, smallpox vaccination as an immunisation for cervical cancer and so I saw the nurse for that and I found her a big help. She was, because she was throughout, from the diagnosis to post-op I saw her and it was, it was really nice because I could chat to her and it meant that I saw somebody on a regular basis throughout my treatment. And that, I felt that the benefits of taking part in the study were, were tenfold really, because I was able to talk to her and she was somebody, she wasn't family and she wasn't a friend, so it was nice, I didn't have to worry what I said, you know what I talked about to her you know that I was going to upset her or, so that, that was brilliant seeing her throughout and I think that was a big benefit of taking part in the study.
Last reviewed July 2017.
Last updated March 2010.
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