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Ovarian Cancer

Facing the future

After treatment many women enter a period of remission, which may last months or years. In some the cancer will recur (come back), but many respond to treatment even if their cancer recurs several times. However, sometimes further treatment (aimed at curing the cancer) is not possible. Doctors may then suggest treatments intended to prolong life and help to keep the person as well as possible for as long as possible. If no further treatments can be given to control the cancer, medicines can still be used to relieve symptoms that it causes (see 'Controlling the symptoms of advanced ovarian cancer'). Although people sometimes talk of being given a certain time to live no-one can reliably say how long someone with cancer will live. Even modern scans and x-rays can only support a guess, which can be wrong in either direction.

When asked how they saw their future, some women said they didn't think about it. One found it difficult to see a future while she was still having chemotherapy. Many women in remission felt sure they had been cured and tried to put their cancer experience behind them and get on with their lives. Some who were still being treated looked forward to a time when they could get their lives back to normal or make lifestyle changes (see 'Lifestyle and work changes'). 

 

Couldn't visualise any future while feeling so ill from her chemotherapy.

Couldn't visualise any future while feeling so ill from her chemotherapy.

Age at interview: 57
Sex: Female
Age at diagnosis: 56
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How do you view the future?

It's, it's really peculiar, because you don't know whether you've got a future do you? I don't, you know, it's I can't even sort of think forward at all because I can't imagine what I'm going to be like, you know, I can't imagine what I'm going to be like when I get over the treatment. I, you know, am I going to feel better? Or, or am I not going to feel better? So I can't, I don't really think about it really. I don't have a view of where I'm going or what I'm going to do or anything really, which is quite peculiar really. It's a peculiar feeling, just living for the day, because we don't live for the day, none of us do really, but I feel now I sort of virtually do, because you don't even know what you're going to feel like the next day, even like with your treatment, you don't know what you're going to feel like the next day, so it's, that's quite peculiar, different, very, very different. It is.

 

Felt she had reached a stage where she could put her cancer experience behind her.

Felt she had reached a stage where she could put her cancer experience behind her.

Age at interview: 48
Sex: Female
Age at diagnosis: 41
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What about the future, how do you view that?

I view that more positively now. I think I've got to a stage where I can think I can put most of the experience behind me. I even feel that when I went for my check-up last time that maybe next time I go I'll say 'I don't want to be seen again' actually, which may seem a bit stupid but I find it very, very difficult sitting in an oncology clinic where there are a lot of people who are worse off than me, and I almost feel like a freak. You know.

So, and actually the other day I was walking through, I work near the screening department where they're doing a huge trial for ovarian cancer, and they had a video on about ovarian cancer which they show to the women while they're waiting to have their blood tests or their ultrasound. And I walked through and they were talking about ovarian cancer and I actually remember thinking to myself 'Well that's one thing I haven't got to worry about any more'. And I felt that was quite an important junction that I'd got to the point where I can actually put that behind me.

Now whether that's because I'm so involved in ovarian cancer anyway and actually its not such a big issue because the hospital where I'm working is where I've been treated, so going for a check-up is just like walking across the road to the outpatients department and it's not such a big issue.

Others accepted that the cancer might return but still hoped to survive for many years to come. Several hoped to live to see their grandchildren, and one woman in her forties hoped that it was not too late to return to college or find a husband. A woman in her mid-sixties had recently bought a 20-year holiday property time share. Others said they wanted to enjoy the time they had left or believed that the longer they survived the more likely it was that better treatments would be developed.

 

Accepted that her cancer could return but hoped to survive for many years.

Accepted that her cancer could return but hoped to survive for many years.

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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How do you view your future?

Mostly positive and I know that I've always got to live with the fact that I've had cancer. That ovarian cancer is an aggressive cancer and that in many cases it does reoccur. So I do, I do wonder whether my life expectancy is as good as it ought to be but mainly I've got that parked right at the back of my mind and I don't think about it. And so, I'm going ahead and, you know, keeping fingers crossed and with luck I might still be here in 10 years time. I don't know but I might be, I hope I am.

 

Hoped to be able to return to college, to find a husband and live to see her grandchildren.

Hoped to be able to return to college, to find a husband and live to see her grandchildren.

Age at interview: 48
Sex: Female
Age at diagnosis: 46
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How do you view your future?

My future, I have dreams, I have dreams. I have dreams that the minute I finish going my treatment, things like that, I would like to go back to college and do some counselling courses, because I love people, I love young children, I love aged, I can help them, what I've gone through back in Africa and here, and I've plenty to give to people, yeah, not to lose hope.

You know I had dreams when I came to this country, that for the first time I may find somebody to love me and marry me. I had dreams, I'd say to the Lord 'the boy has grown up now, give me somebody to look after me for a change' you know what I mean? I'm not giving up.

I have cried also, because I was hoping to see, and my dreams were to see my grandchildren one day, because he's only one boy. If he had 2 or 3 children we would be big family. That's all my dreams and I pray God even up to now to let me see them. 

Because of their uncertain future many women found it difficult to plan more than a few weeks or months ahead. One didn't let this uncertainty stop her making plans; another whose cancer had been diagnosed at stage one twelve years ago said having cancer had not affected her long-term plans. A woman who was diagnosed five years ago had taken several 'last' holidays. Another, who knew she had little time left, planned to pack in lots of outings with family and friends in what time remained.

 

Felt uncomfortable about planning her life more than a few months ahead.

Felt uncomfortable about planning her life more than a few months ahead.

Age at interview: 55
Sex: Female
Age at diagnosis: 50
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How do you view your future?

On a much shorter timescale than I used to. I know when after my chemo my husband would say, 'Right, let's book a holiday, let's book a holiday', and if he booked a holiday that was further away than like two months, it was like, 'no', I just didn't want to know. So my timescale has over those years lengthened again but it's not that big. If you said 'how far, how far have I planned or do I go?' Christmas would feel comfortable. So that's what' eight months, comfortable. Now, because we are having a lifestyle change in moving house, if maybe two years ago I wouldn't have even considered it. So yeah, my, my length of time planning is much shorter than it was. But I'm back to planning. It used to be quite frightening, that did, the thought of somebody enthusiastically saying, 'Let's do this in six months' time,' and me thinking, 'I don't want to think about that. And I know I'm alright, why am I not thinking about that?' 

Some women accepted that a point would come when no further treatment would be possible and they would die. One said she had never expected to be cured and had already survived much longer than she had expected. Another did not want a long lingering death or to be a burden to others, and hoped that euthanasia would be legalised in time for her death.

 

Accepted that she might die from cancer but didn't want a lingering death or have others being...

Accepted that she might die from cancer but didn't want a lingering death or have others being...

Age at interview: 53
Sex: Female
Age at diagnosis: 52
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So realistically I have to think well ovarian cancer will probably be the demise of me but I don't know when and I think you, everyone's like that, you know, we're all kind of like going to an end eventually, so that doesn't necessarily bother me.

I never thought of myself being sick though and I certainly don't want to live years of being incapacitated or having other people have to be responsible for me. So if I had a fear it would be that, where I would be too sick to do anything and like linger on for years, I wouldn't want that. I hope they approve euthanasia for terminally ill patients actually, less drain on the NHS as well.

Some women had already faced the possibility of dying earlier during their illness. One had been told on diagnosis that she would probably only live two weeks, but had already survived more than two years. Another had said goodbye to her husband before a bowel bypass operation in case she didn't survive (see 'Controlling the symptoms of advanced ovarian cancer'). Another had spent two weeks in a coma after experimental chemotherapy (see 'Treatment complications'). One woman was taken aback to be asked where she wanted to end her days at what seemed to her a rather early stage in her care.

 

Was surprised when asked where she wanted to die; it seemed too early to think about it.

Was surprised when asked where she wanted to die; it seemed too early to think about it.

Age at interview: 63
Sex: Female
Age at diagnosis: 52
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And once when I was in the hospital I talked to a nurse about the pain I was having and she suggested I got hold of the Macmillan nurse organisation who might have more idea of what to do. And that proved to be very successful and I was also asked to go to the local hospice and have a look round there, and found, as I'd found in the hospital, the people dealing with me incredibly kind and understanding. So that was a very positive experience, although I think my husband and I were both a little bit taken aback to be asked things like where did I want to end my days? And things like that. And we decided that we wouldn't have a full tour just at that time because it felt too early somehow.

Many people find it very difficult to talk about death and the process of dying when it is happening either to themselves or to someone close to them. Friends and family sometimes try to prevent the person from 'being morbid', but some people who are dying want to be able to talk about it. Several women who knew their life would end soon had discussed it with family members. One had noticed that the Macmillan nurses and her doctor had begun to give her 'knowing looks' and to ask her different types of questions. Another had asked her doctors to explain how she would die.

 

Had talked with her husband and children about what would happen when she died.

Had talked with her husband and children about what would happen when she died.

Age at interview: 63
Sex: Female
Age at diagnosis: 52
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I think also it's lucky that, you know, we were retired when we did and we were very fortunate in that we could enjoy the retirement for quite a while. Both of us enjoyed the travelling and it's a great comfort now to look back on all those lovely memories, and I hope that once I've gone that he will be able to resume some of that and enjoy it again. We've talked about, you know, what happens when I do go. I think we're both quite philosophical about things like that. I think it upsets the children a bit when we talk, but between ourselves we don't find any difficulty in talking about it.

Some women had made practical preparations such as deciding where they wanted to die, making or updating their will, or planning the funeral. One woman who knew she was dying held a party to celebrate surviving five years but treated it as a pre-funeral party. Another woman was discussing with her family what to do with her body after her death. She wanted it used either in medical research or plastinated like those in the 'Body Works' art exhibition; her children had suggested having it cremated and the ashes scattered at sea. 

 

Saw her '5 year survival' party as an occasion for her friends and family to meet before her...

Saw her '5 year survival' party as an occasion for her friends and family to meet before her...

Age at interview: 57
Sex: Female
Age at diagnosis: 52
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We had the party and that was absolutely wonderful, it was on a beautiful day and lots of people were here and we had wonderful food and wonderful conversations, and as I pointed out on the day, this day was, I didn't see why they should have a party at my funeral and I can't see what's going on, so it was a pre-funeral party that we could all enjoy and all enjoy each other's company, so when the time does come for me to have a funeral, people will know each other and be able to talk to each other, and they will be able to have that memory. So that to me will be lovely that they have got that memory.

 

Discussed within her family what to do with her body after her death.

Discussed within her family what to do with her body after her death.

Age at interview: 58
Sex: Female
Age at diagnosis: 49
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And the other thing is I want to find out what to do with my body because I wanted to leave it. I have actually left it in my will to anatomy, to go to, to be recycled, rather. I'd much rather my body's used for somebody to experiment with or fine but they won't. I don't think they want it with it's disease and especially if it's malignant, so now I have to find out if there is any other way that I can dispose of it that way.

The oncologist said they may want, may be able to use some of my body tissues for Imperial Cancer so I've got to follow that up, and the other thing which most people are laughing at me is I went to see the Body Works where they do the plastination now that appeals to me. And whether it, I feel I would like to leave it to that, but I've got to ask my kids what they feel like first, I mean they've got to live with it haven't they? So that's something, and my husband. It's something that's not going to cause any problem, it's got to be easy for them because obviously it's going to be a sad time so I hope I hope, well I shall take, do, I shall go into this during my next chemo, when I've got time, and see if I can come up with something. 

If not it's where my kids want me to bury it and whether it's hopeful or whether it's cremated. They suggested I did a parachute jump and I want to do another one but they will cremate me and put my ashes in an urn and have the plane come over the end of the [town] pier and they'll drop me off into the sea, but I would like to be with the dolphins, so I don't know, I don't know what's going to happen, we'll see what happens at the time.




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Last reviewed June 2016.
Last updated June 2016.

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