Interview 62

Age at interview: 36

Age at diagnosis: 27

Brief Outline: Diagnosed with advanced cervical cancer and given a poor chance of survival in 1992. External Radiotherapy followed by Internal Radiotherapy.

Background: Flight Attendant; cohabiting, no children.

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In 1990, she went to see her GP as she had noticed some abnormal bleeding from her vaginal area. Her doctor advised her that there was nothing to worry about and that she should just forget about it. She said that as she was only 25, she presumed that this was the way things were supposed to be. Two years later she noticed a discharge as well as the bleeding and made an appointment with another doctor. She was referred for some tests, and she and her husband were given antibiotics in the meantime in case it was due to an infection. She and her husband went away on holiday, where she found the antibiotics had no effect and that she would wake up in a pool of discharge. When back from holiday her GP referred her for a colposcopy. 

 

During her colposcopy her consultant conducted a biopsy when he noticed an abnormality during examination. She was called in immediately after her colposcopy to discuss the results with her consultant who diagnosed her with cervical cancer. He informed her that the cancer was advanced and that they would have to act fast. She said that her whole world changed within 10 minutes. She explained that she couldn’t believe what was happening as she felt fine. She was referred for further tests and a CT scan as it was likely the cancer had spread. She explained that at this point she was in denial and had felt too numb to ask questions. When they had taken some time to absorb the diagnosis, she and her husband decided to go privately so that they could assess what her options were. They found the consultant extremely helpful and informative. She appreciated her consultant’s straight-talking attitude. A week later she went into hospital for an exploratory operation to decide the best course of action. She then underwent external radiation followed by an internal radiation treatment. She found that the external treatment didn’t really affect her until the last week, when she started to feel extremely unwell and suffered from constant diarrhoea, vomiting, and extreme weight loss. She also found the internal treatment extremely difficult to cope with and painful. She tried to maintain a positive attitude but became very low and found that it was a very isolating period as her husband and other visitors would be restricted to 30 minute visitations every 24 hours because of the levels of radiation. She was in hospital and unable to move for a period of 6 days. It was a mentally and physically exhausting time for her. She found the side effects from the treatment persisted long after the treatment finished and still has issues with diarrhoea as part of her bowel was damaged during radiation. She felt relieved to find out the cancer had gone but had also found it hard to believe.

 

She explained how radiation affected her feelings of femininity for a long time and that she had periods of feeling unattractive. She didn’t feel sexual and had been afraid of having sex. She found the fact that she and her husband would openly talk about their sexual relationship helped with any anxieties she had. She explained that after years of bleeding it was refreshing to realise what was normal. At the time of diagnosis, she had been focussed on getting better and felt that being unable to have children had not been a key issue. She said that her husband had been a great support and source of comfort for years but that after another health scare they started to experience problems. She explained that he struggled to cope and wasn’t able to live without children, and that they decided to separate. She has come to terms with not having children and has now found a partner who has similar priorities. She felt that it was important to be open with her new partner about her condition and her past experiences so that she can move on and make positive steps forward. Since her experience of cancer she has experienced further health problems but they have turned out to be nothing to worry about. 

 

She also found her friends and family an invaluable support. She explained that she felt protective over her family and didn’t want to worry them, so would be more reserved when discussing how she felt. She had found the hospital staff extremely supportive and felt confident that she had a team of people who she could trust. She did not feel pressured to return to work and was grateful to her work colleagues. She wishes that she had been able to talk to someone who had been through a similar experience and survived. Initially, she hadn’t been ready to contact organisations as she hadn’t felt ready to talk and just wanted to cope with her cancer. Afterwards, she wanted to give something back and worked in a local charity shop for 4 years as well as carrying out fundraising with her father. She wanted to help other women recognise the symptoms as she had felt too young and inexperienced to challenge her doctors. She didn’t want to be a victim of cancer and found that talking openly about it with people allowed her to carry on as normal. She explained that some of her friends didn’t know how to react to her diagnosis.

 

She said that she thinks about it every day and does worry about the cancer returning, and in particular would find follow-up appointments difficult. She emphasised that her experience of cancer has not always been negative and has led to positive outcomes too. She feels like a different person and that the experience has made her more positive and compassionate. She believes it is important to live life to the full and do what you want to do. She just wants to enjoy her life. She explained that although it changed her life relationship-wise, she has found strength and feels that she can cope with anything. She emphasised how important it is to have a support network and talk about how you are feeling as it is a challenging experience and one that stays with you. 

 

 

 

Treatment for cervical cancer left this woman with ongoing bowel problems which she describes as...

Physically I did struggle a bit because of the side effects and I did suffer and I do suffer now slightly with my bowel because of how it was destroyed in treatment. So embarrassing questions really like, ‘Does that get better?’ And now all my friends know about it because if they didn’t I’d be very embarrassed, so I make a kind of a joke of that side of things, but people do understand, but it would have been nice to be able to speak to somebody who could say, ‘This is my normal’, or, ‘This is how its gonna be’, just to know that you’re not abnormal, that this is a result of the treatment. So yeah I think I would have liked to have spoken to somebody about that.

 

Right, thank you. There is one thing, is there anything now that you can’t do that you were able to do before, any activity or anything?

 

No, nothing. In the beginning I was afraid to because of my bowel and I would always be looking where the nearest toilet was, or if I’d be on a course for a day I would think I can’t go because what if I have to run out of the course. But I’ve actually learnt to live with that and I do tell most people, so it’s not sort of an issue, and if I’m out for the day. I think psychologically I can cope with it a lot better now, so physically it doesn’t affect me so badly for some reason. So that would be the only thing that would be a long term effect on me I think but it’s something that I have dealt with and can deal with and it doesn’t affect anything I do anymore. And nothing else is affected, I can do anything.

 

The problems with bowels is that diarrhoea?

 

Yeah, and an urgency, if I need to go I don’t have a choice, I can’t stop it unfortunately. But I can, you know, I still have accidents, sometimes I don’t always make the toilet but I know how to deal with it. Mentally it doesn’t upset me anymore. I just know that that’s gonna be a part of my life, it’s a small price to pay.

 

She didn’t want sex for a while after radiotherapy for cervical cancer, but her husband was...

I would say for a long time, six months or so, I didn’t want to anyway because I felt that, I was scared, I think, of bleeding or the pain or the discomfort, and I was douching every day because of scar tissues, and I was told at various treatments afterwards, or appointments afterwards, that it was raw tissue inside, so I didn’t feel very sexual, to be honest. I didn’t feel like I was a complete woman anymore because I didn’t have ovaries that worked, and I did go through a stage where I didn’t feel very attractive or very appealing as a woman even though no one in the street would have known, I knew, and that was quite tough yeah.

 

What effect did that have on your relationship at that time?

 

It didn’t actually, my husband was very supportive again. Again, I think he was quite scared of hurting me as well. And he never put any pressure, you know, we always cuddled, we were quite an affectionate couple anyway, so it didn’t really affect; it didn’t affect our relationship I'd say, definitely not, no. We always talked about it too, which I think is quite important. And when I did feel it was time, and I was ready, it was such a revelation after all those years of bleeding, that suddenly I was normal, and it was normal and this is how it should have been, but I never knew, and that was quite nice really.

 

Can you explain a little bit more about that?

 

Because in the beginning, before I was diagnosed, I did bleed during sexual activity, and when I went to the doctor originally he told me that was normal. It didn’t always happen but when it did happen I just presumed, because it wasn’t something I would talk about with my girlfriends, that it was normal. So suddenly when it wasn’t happening any more that’s when I realised it wasn’t normal at all.

 

OK, and when you actually resumed a sexual life, did it feel any different?

 

Yes, mentally I think for a start because you’re very aware it could be painful, it could be sore, you could affect something, you could bring on another tumour, so all those feelings are going on in your head, but physically it wasn’t painful at all actually. It wasn’t, it wasn’t uncomfortable. I was told in the beginning that I might lose the top of my vagina from my treatment, but it didn’t feel any different for me. My husband said it didn’t feel any different for him. Again, it was the release of not having the blood, it was just so different for me because I’d had that for a few years and suddenly it wasn’t there, it was really good.

 

Now that she has come to terms with being infertile after cervical cancer treatment, she feels...

You’ve been able to cope with that, is there anything that you know helped you which might help other women who realise they are going to be infertile because of the treatment?

 

It makes you more compassionate to other women. It’s a question I’d never ask any of my friends about children unless they wanted to talk about it, and I find that a lot of people do want to talk to me about it because I understand. And I have got friends that can’t, so I think you can only understand what it feels like if you’ve been there yourself really. It’s easy for people to say, ‘Yeah I can understand’, but they’ve got three children. And you are much more compassionate definitely. I would be prepared to give time to talk to someone if they couldn’t have a child and they wanted to talk to someone, because there are other areas in your life that you can go to that can bring you happiness too. It doesn’t have to mean everything.

 

She began a new relationship after her cervical cancer treatment; she told her new partner early...

And going to a new relationship and having to tell your partner that you had cervical cancer, what was that like?

 

It was quite tough actually and he didn’t know obviously beforehand, although I knew him years ago, he didn’t know what I’d been through. It was something I wanted to discuss quite early in the relationship because I didn’t want to get involved with somebody if two years down the line they decided they wanted children. So it was something that we did discuss quite early on and I wanted him to really go away and think about it before we continued. Because I couldn’t have coped with someone rejecting me again because of my fertility. And I wanted someone this time to love me for me and to be with me because it was the person not how I’d changed inside. You know, because obviously inside I’m very different to probably another woman. And we discussed it, we talked about it, he went away and thought about the children scenario and it really hasn’t been a problem. He came back and said it wasn’t an issue, he didn’t particularly want children anyway and he didn’t feel there was anything physically different to me, to any other woman. And that’s what I needed to hear really, I needed for someone to be really positive and on my side. Now it’s not a problem at all but initially I think the problems were within my own head because I didn’t, I thought I’d be rejected for things they couldn’t see.

 

Her new partner is understanding about her past cervical cancer; she tried to hide her fear of...

Mentally it was easy when I was with my husband because I thought he understands, he knows. But when I was going into a new relationship it was something that I thought someone’s not going to like me because of this. But it’s actually amazing how people understand. My new boyfriend hasn’t got a problem with it at all. And he will be in the car with me and spot the toilets for me if I need to go, so he’s very supportive. I think it’s something again you’ve got to talk about. If you don’t tell your friends and you don’t admit that you’ve got a problem, then you probably have a problem yourself mentally, because dealing with that is quite hard if you don’t admit it. 

 

Well I’m with a new partner now that I’ve been with for a year, and it was the first time he’s experienced an appointment, basically, and he saw a difference in me, because I was very, you become very introverted, you don’t even want to talk about it, but it’s all going on inside your head. You’re imaging, you know, what if there is something on the right hand side, how am I going to deal with it, how’s he going to deal with it, is he going to stay with me, is he going to panic and run like my ex-husband? So all those feelings were going on in my head and I didn’t really want to tell him that I was afraid because I wasn’t sure how I felt really, and if it was nothing I didn’t want to pretend it was something; if it was something I didn’t want to put the pressure on him, so it was quite an emotional week. Although he was very supportive.