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Ovarian Cancer

Other sources of support

Most women we spoke to said they had received excellent support from family and friends in coping with their illness, and some found comfort in their spiritual beliefs (see 'Support from family and friends and spirituality'). Here we describe the support women gained from professionals, support organisations, self-help groups and other people living with cancer.

Several women praised their doctors, especially their GPs, for their support and encouragement. Hospital-based nurses were also sometimes praised for talking with women and explaining things to them, sorting out problems and being always accessible on the phone (see 'Communication with health professionals'). Macmillan nurses were another source of support (their role is described in the 'Resources' section). Many women said that Macmillan nurses had talked with them about their illness, sorted out problems and helped them to claim state benefits (see 'Financial implications'). One woman's Macmillan nurse had helped her and her mother to talk together about the illness. Another would have liked more help from her Macmillan nurse, who only visited her once.

Social workers also supported some women by talking and helping with benefits. A few had appreciated visits from clergy. Another said her acupuncturist was good at keeping her spirits up.

Many hospitals now have cancer centres which help with information and support. Many of these centres, and hospice day centres, arrange free complementary therapies, psychological therapies such as cognitive behavioural therapy and counselling, or stress management (see 'Complementary approaches'). Several women we spoke to had benefited from visiting these centres, but for one who lived in a rural area the nearest centre was too far away. GPs can also arrange access to counsellors and therapists.
 

Describes the range of support services offered at her local cancer support centre and the...

Describes the range of support services offered at her local cancer support centre and the...

Age at interview: 46
Sex: Female
Age at diagnosis: 39
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And the local cancer care, which is a charity, it's just a place where you can go and meet other people with cancer, and they have people there who do aromatherapy massage, Alexander Technique, music therapy, woodwork, art, Qijung and Tai Chi.

Again, I think the main benefit is just a living proof that life goes on with cancer.  It's a very cheerful place and there's a lot of laughter there, and the whole focus, which is very interesting because I notice a big difference between North America and England. The whole focus in North America tends to be fighting the disease, combating it. While I feel that in England that has still been a priority, I think over here there is also a lot better emphasis on the quality of life and living with it, living with cancer. And places like the local cancer care group are testament to that. That your quality of life is still very, very important, and there are things that you can do to make sure that you maintain a good quality of life, and they're there to help you do that.

Some women had had one or more counselling sessions, which helped them to deal with their feelings and those of other people about the illness. Some women found it easier to talk with a professional about their fears rather than distressing family or friends. One woman didn't accept an offer of counselling because she wanted to try to cope alone, whereas another said that she had counselling because she couldn't cope alone and didn't want to overburden her family.

 

Describes how counselling helped her.

Describes how counselling helped her.

Age at interview: 55
Sex: Female
Age at diagnosis: 50
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And I rang up and said 'Can I come and talk to you? Maybe I need some counselling?' And I think we had about four or five sessions. It was really good. It really' Going from feeling like' Because I'm a, you know, I've done some training in counselling so I've done some counselling and I'm thinking like, 'Why am I having this?' But after about the fourth or fifth session I could really start to feel the benefits of having somebody completely outside of my family, friends, people who care, to say 'This is how I really feel'. Because it's very isolating. I mean, it does make you' Well, you know, how do they know? I never ever felt, 'Why me?' That didn't come into it, somehow. But very much feeling sometimes of, like a sadness when I saw people, you know, I had no hair and, whatever' 

So it does give you an isolated feeling. Who can you really say, 'I'm scared stiff really, I'm putting this brave face on but inside there's a little me that's petrified', but with the counselling I was able to do that. And get an understanding of why my husband wasn't saying how he felt, you know, that kind of helped me to work through in my mind what was going on there. 

Although help from professionals was much appreciated, one woman thought that professionals care because it's part of their job, unlike the loving care provided by family and friends (see 'Support from family and friends and spirituality').

Some women gained support from local or national cancer support charities such as Macmillan Cancer Support and Ovacome (see 'Resources' section). Several had subscribed to Ovacome's regular newsletter, and some had been put in touch with another woman with ovarian cancer. One said she did not want to use Ovacome's 'Fone Friends' facility because she didn't believe there would be anyone available to speak to her who had as poor a prognosis as she had. Two others had volunteered to become a 'Fone Friend' to help other women.

 

Benefited from the experiences of other ovarian cancer survivors by subscribing to Ovacome's...

Benefited from the experiences of other ovarian cancer survivors by subscribing to Ovacome's...

Age at interview: 52
Sex: Female
Age at diagnosis: 50
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So that's when I joined ' the Ovacome, that's advertised in the ' the Support Group for Ovarian Cancer, in the Backup book, and got their newsletters, and they were very helpful because they gave other people that had been in the same position, their letters. And some sad stories, but there were good stories too.  

You want reassurance all the time, and you can only really get that to a certain degree, and I suppose the 'Fone Friend' that I speak to from Ovacome says that now she's eight years down the line, which, again, was reassuring to hear, she doesn't' she gets her check-ups once a year, and she has to really make sure that she writes it in big letters on the calendar, because a year's such a long time, and it's so not part of her life any more that she genuinely forgets.

Women often said it was encouraging to talk to friends who had cancer or to hear stories of other ovarian cancer survivors, and some had struck up friendships with other women they had met when having their treatment. Another way of meeting people who may be in a similar situation and facing the same challenges is to join an online community. Joining a group can particularly help people who live alone or who cannot talk about their feelings with those around them. Other women said that attending a group enabled them to exchange information, to meet other cancer survivors, to share experiences with others who could best understand them, to talk openly and say the word 'cancer' without causing distress or embarrassment, or to be among people who you could talk to about cancer if you wanted to.

 

Gained support from hearing about, and making friends with, other ovarian cancer survivors.

Gained support from hearing about, and making friends with, other ovarian cancer survivors.

Age at interview: 48
Sex: Female
Age at diagnosis: 41
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Some people want to speak to other people who have been through the situation. Everybody wants to speak to somebody whose been through and come out the other side and is doing really well. And I think that gives everybody a real boost.

And there were one or two people that I don't, I've never met but I know about, and they were very, very important to me. And they were two people who were diagnosed fifteen years before I was diagnosed, and they were doing very well, and were perfectly well and not having any check-ups anymore.

At the time I got to know a lady who lived in the south of England and she'd had exactly the same surgery as me, she'd had exactly the same treatment and we were going through check-ups together and we would phone each other every day.  

 

Benefited from keeping in touch with other survivors through going to a local self-help group.

Benefited from keeping in touch with other survivors through going to a local self-help group.

Age at interview: 44
Sex: Female
Age at diagnosis: 38
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I have kept in touch with some of the people that I was in hospital with because we joined the same support group when in hospital, and while it was very important then emotionally, our meetings now maybe revolved more around life outside of cancer and getting together for a chat and a laugh and sharing common interests or going out for meals at special times. But knowing that underneath it all we all share the same experience, we all have an understanding of what it's like to be diagnosed with cancer and go through the treatments and the effects that it has on your family and friends.  

Local support groups often include people with many different cancers, whereas some women want to meet others with ovarian cancer. Some women had set up self-help groups themselves either because they felt isolated and there wasn't an appropriate group already in their area or because they wanted to support other women with ovarian cancer. Some people benefit from attending a self-help group in the early stages of their illness but later feel they no longer gain anything personally but can continue to help others. One woman kept going for this reason and because she had learnt about research showing that people with cancer who belonged to support groups found it improved their mood, helped them to cope better with day-to-day challenges, and reduced their pain.

 

Started a local self-help group because she felt isolated and wanted to give something in return...

Started a local self-help group because she felt isolated and wanted to give something in return...

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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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, 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.  

 

She no longer gains from attending her self-help group but continues for the sake of others.

She no longer gains from attending her self-help group but continues for the sake of others.

Age at interview: 33
Sex: Female
Age at diagnosis: 30
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I am getting to a stage where I don't really know if it's actually helping me at all now but I keep going because I think it would be a very big shame if it folded and people couldn't get the benefits that I did get. There's also evidently, my GP told me this, it was my GP that told me about this local support group, and it was my GP that told me that there had been some literature research done in America that said that people who go to cancer support groups are far more likely to survive their cancer because they're kind of, you know, helping each other along the path, road, whatever you want to call it. So, you know, that stuck in my mind and has stuck in my mind and I do think 'right, you know, it must be a good thing if this has been researched'.

Although a self-help group can provide many benefits, several women we talked to had not enjoyed their experience of them or did not want to join. Some said that they wanted to live their lives as normally as possible, do normal things and surround themselves with healthy people rather than others with cancer. Some felt they would become depressed by listening to other people's stories or being among people whose situation was worse than theirs, or felt they had little in common with the relatives of people with cancer. Some women said that they wanted to handle their illness on their own, or that they already had enough people they could talk to and didn't feel the need for extra support.

 

Had not been to a self-help group because she wanted to live her life as normally as possible.

Had not been to a self-help group because she wanted to live her life as normally as possible.

Age at interview: 59
Sex: Female
Age at diagnosis: 58
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Have you been in touch with any support groups at all?

I haven't.  I've been, I went to Cancerbackup and I got all the literature there, but I felt that I didn't want it to, I really didn't want it to play the most important thing in my life. I have got friends that have had cancer and are clear now and in remission, I keep in touch with them. And apart from yourselves, I haven't been in touch with any support groups at all. One, because I felt that my way of overcoming it and putting it to the back of my mind was to steer clear of too much of that, and I didn't want to get too involved with it because of my husband. I mean we said that we just want to get our life back to as normal as possible. Had I been in perhaps a worse situation, then I might have felt differently about that. 

But I think you will find that most people that have had cancer and that are getting over it try to put it at the back of their mind and just look at it as a part of their life that they've overcome and just want to push it to one side. And that's what I feel that I want to do now. I just want to get on with my life, get this out the way, get on with my life and get it as back to normality as I can.

 

Hearing the stories of bereaved relatives at a self-help group meeting was depressing.

Hearing the stories of bereaved relatives at a self-help group meeting was depressing.

Age at interview: 43
Sex: Female
Age at diagnosis: 41
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When I got there there was one lady sitting in tears because she'd lost her husband a year before that, and another lady that was there, she was, her, she'd had relatives with cancer. Now I was a depressive person anyway and I really couldn't cope with somebody sitting in tears for their husband or a relative because I was the angry person that had had it. And I had sort of moved on from that stage and I thought, 'if I get involved with this I'm going to get more depressed'. So I sort of very kindly said, 'Look I'll come along, I'll talk to anybody that's got cancer that wants to know how I went through it' (i.e. I mean this sort of programme is ideal for me) 'but I really don't need a weekly thing or a monthly thing where I've got a lot of people sitting crying', because I've got to keep my strength up, I've got to keep positive'. And I still believe I've got to keep positive.  

So it, the cancer group at that point wasn't any use for me 18 months on. Had it happened 4 or 5 months into it, yes, I might have been more interested but not, I'd come through the worst stages, if you see what I mean, and I needed to be looking to the future, not mopping up tears and things for other people. I mean I could quite understand this woman being upset, but I had to look at it from the different angle, I was the patient not the relative. So it wasn't really meant for me, I had to move on from that.


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Last reviewed June 2016.

Last updated January 2010.

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