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Interview CC19

Age at interview: 28
Age at diagnosis: 27
Brief Outline: Diagnosed with advanced cervical cancer in 2001. Radio-chemotherapy (chemotherapy- cisplatin given one day a week) followed by Internal Radiotherapy (11 hours). Cryo-ovarian preservation operation before treatment started.
Background: Public Relations Officer; with partner, no children.

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Describes the cryo-ovarian preservation operation she had before radiotherapy.

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Describes the cryo-ovarian preservation operation she had before radiotherapy.

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So I went into hospital in the morning, day patient, got changed into my gown answered a few questions, another general anaesthetic. This all has to be done before your radiotherapy as well because obviously one radiotherapy session is supposed to kill your ovaries. 

It didn't really hurt, they basically I've got two little scars about my pubic line, one in my tummy button, they put basically a little camera in your tummy button and then take the ovarian tissue out through the two little, two little incisions which are about a centimetre long, hardly at all. And then it's frozen and you don't have to pay for it. The treatment will only be offered to you if, well I say offered I mean I had to ask for it, but you will only be eligible for it if you're, at the moment if you're undergoing treatment for cancer. 

And I didn't want to do it unless I sort of thought this is going to be quite likely to come to something. But what I didn't want to happen is to not have it done and then in 5 years time read an article about some woman that had had a baby and think I wish I'd done that. I was a bit cross that the hospital that I was having my cancer treatment in hadn't suggested it to me actually because after I'd had the operation which didn't hurt, came out of my general anaesthetic, I was in sort of a little waiting room, probably half an hour, an hour that sort of time, my sister collected me, jumped in a cab, had a couple of stitches in the three little scars and they gave me some strong pain killers which I didn't take because again I thought I don't want to put anything else in my body And it did hurt a bit but not really, had the stitches out a week later no problem at all. And the doctor was so nice to me and he said to me you know when I found, "You know when you've found somebody that you want to spend the rest of your life with," he said "you come back and we'll sort you out," which I thought was really lovely. 
 

 

She describes her experience of using a douche after internal radiotherapy.

She describes her experience of using a douche after internal radiotherapy.

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A douche, I didn't know what it was either. It's a plastic, like a plastic bottle which is almost like concertinaed so that you squash it and it's got a sort of tube on the top which has got lots of little holes out of it. So you fill it up with water. I suggest sort of luke warm water because if it's freezing it would be horrible. Fill it up with water, screw the sort of pipe bit in the top, the little tube on the stop and then you just have to push it inside you and then you squeeze it and the water comes out of the little holes in the tube. And it's basically supposed to just I suppose moisturise you inside and get rid of anything that shouldn't be in there, all your dead cells. And that's twice a day you use that. And you can use it in the bath which means you don't have to use KY jelly and it's a bit more comfortable or else you could just use it and do it like that.

 

Explains how she feels different sexually four months after radio-chemotherapy.

Explains how she feels different sexually four months after radio-chemotherapy.

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I mean you have to just I have not been able, I have not been able to have sex yet since. And I think a lot of it is to do with the fact that after you've been through this treatment you've been prodded and poked so many times around in your nether regions that actually the prospect of somebody coming any near you wanting to have sex is so repellent. Because you feel like, you feel a bit like a thing I thing and doctors would never want you to say that you feel like a thing but you do because you've had months of people operating on you and you've had about 20 different doctors seeing your bits as you're sort of lying there and you just don't feel very sexy about things like that any more. 
 

She read about cryo-ovarian preservation on the Internet and was able to talk to her doctors...

She read about cryo-ovarian preservation on the Internet and was able to talk to her doctors...

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I forgot to tell you about my ovarian operation as well actually. I forgot to tell you about that. Basically my Mum because she's great and looking at all these internet sites she read about having ovarian tissue, basically cryo ovarian preservation, it's quite new. And so I had read about it, since my Mum had found this information and when I went to the hospital I discussed it with them. And actually they were a bit dismissive about it to be honest and it certainly wasn't something they would have offered me had I not brought it up. And they said "Well you can't have it done here but you can have it done at another hospital." So I phoned up the other hospital myself, made an appointment and went into go and see this woman and she said to me "Yes you can have it done," and she said "There is, no children have been born as a result of this." But what they do is they take out a portion of either one ovary or both ovaries and this ovarian tissue is then frozen over a period of 6 hours by an embryologist and obviously stored in special little tanks. And the hope is that they will shortly be able to either defrost this ovarian tissue and implant it back in to the person it's been taken out of and thereby either kick start it with hormones so that it will start producing hormones all by itself and then start producing eggs which can then be removed from the ovary and fertilised and be implanted into a surrogate mother. Because if you've had this radiotherapy treatment you're told that your womb will never be able to carry a child so you'd have to use a surrogate. Or else to be able to defrost the tissue and in a sort of petri dish, or a test tube or whatever and then stimulate it to produce eggs which can then be fertilised and implanted in a surrogate mother. So that's what I was told the hope was going to be for. 

 

She describes feeling discomfort when she woke from her anaesthetic after the rods had been...

She describes feeling discomfort when she woke from her anaesthetic after the rods had been...

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And that's quite uncomfortable because I came out of the general anaesthetic and I remember I was like, and I've never had, for all of the other operations I'd had for my biopsies and all of the other things I'd kept saying no to any pain relief afterwards and I came round from this and they said "Do you want some pain relief?" "yes," so they gave me diamorphine and they gave me some more. But it's a funny sort of, it's not pain as in cutting yourself or anything it's just a deep sense of uncomfortableness It just feels like something is there that's not supposed to be there. But it's more uncomfortable than having a sort of, I don't know having a too tight shoe or something do you know what I mean. It's just very odd. And I think you've got all that pressure on you as well because you've got all that packing inside of you which is sort of pressing on your bladder and you're catheterised because obviously you're having to, you've got all these rods inside you so you can't move. And they also give you pills to constipate you because you're not going to be able to get up to go to the loo. 

 

She believes that using complementary approaches after her radio-chemotherapy treatment has...

She believes that using complementary approaches after her radio-chemotherapy treatment has...

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I don't know, when I meet people now, I mean I stopped my treatments at the end of last year and I'm back to full time work now and I think I, people that sort of see me think oh my God I can't believe you've had all your treatment and things. And I have to, I do think that a large part of it is down to the fact that I've had acupuncture and homeopathy and watching my diet and things like that. I think it's got to be. 

It's difficult to tell whether or not your energy levels have gone up because of the acupuncture or whether or not you generally get like that anyway. But I think that anything that makes you feel good and feel relaxed when you, you know after you've had it done has got to be a good thing really.
 

She describes the changes she has made to her diet after being diagnosed with cervical cancer.

She describes the changes she has made to her diet after being diagnosed with cervical cancer.

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I then went out then and bought things like the Optimum Nutrition Bible and books likethat which actually goes through specific foods that can help certain cancers. So cervical cancer like papaya and butternut squash, anything sort of beta carotene, things like that are very good. And my homeopath actually backed that up and I'm on a special diet where I can't eat things like tomatoes which are supposed to be fantastic if you don't have cancer, if you're trying to prevent it, but people that have had cancer treatment tend to have quite high acidity in their bodies. And things like mushrooms which sort of put your kidneys under a lot more stress so I can't have mushrooms. Anything like sea food, if you're going through chemotherapy anything that can obviously bring food poisoning on is a very dangerous things because your system is, your immune system is very low. So no sea food or things like that pork because pork tends to have more sort of bacteria in the meat and on the meat. And so it's things like that that I've suddenly started looking at a lot closer than I ever did before. I mean I just, I'd just eat anything before other than offal. 

So I think you do, I think you do because you want to, I think it's a really natural response to have that when you're diagnosing something you want to do absolutely everything you can to make sure that your recovery is as probable as it can be. 

 

She explains how medication, mints and ginger ale helped to reduce her sickness during...

She explains how medication, mints and ginger ale helped to reduce her sickness during...

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And so I took my anti sickness drugs when I was supposed to, went home and I did feel really sick, I felt really sick and I was really surprised how sick I felt. And of course I knew I had to go up the next morning because you're still having to go for your radiotherapy session so you can't just lie in bed and think 'oh God I feel awful'. So I was surprised at how sick I felt. And I actually ended up talking to the doctors about it saying "I feel really sick," and he ended up giving me some steroids to take with it which is what a lot of other cancer patients have when they're having chemotherapy treatment because the steroids make you feel a bit more up and they were great. And actually with each chemotherapy session I had, I found I felt iller quicker. And I don't know whether or not it's because your body is very clever it thinks oh I you God what's happening now and then it starts sort of you know, whether or not it's psychosomatic. I'm not entirely sure it is even psychosomatic. I think that actually by the last one, within 10 minutes of having it gone into me, I just felt awful. But I think the drugs really do help and I think that you should make sure that you do take them. 

I had radiotherapy and chemotherapy at the same time so when I was having my chemo I had lots of ginger ale, ginger ale more than I had lemonade actually, always had mints in my handbag. Because I'd end up being in a taxi and I always used to get a taxi to the hospital and thinking 'my God I feel really sick'. So I always had mints with you because I think mints and ginger and lemon and things like that are really good if you're feeling a bit queasy. 
 

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

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And then the place that I had my chemotherapy in it was, I was actually a day patient. So you go in for the day and you've got chairs around this room with sort of padded arms and you go in and you choose where you want to sit. And this little television there and the first thing that you have in, for my treatment was saline. And that's a big bag of saline with magnesium and potassium because when you're having chemotherapy obviously you've got a lot of drugs that your body is trying to process and it means the kidneys are working quite hard and it means that they're losing magnesium potassium so that's obviously what you need in your system. So they put a big bag of that in followed by a drug that makes your kidneys work faster. So they're processing, they're working really hard to try and flush that because cisplatin can actually be, tends to be, there's a greater risk of it being damaging to your kidneys basically and that's their concern. So you have that to make your kidneys work faster and then you have your bag of chemotherapy. Although before they put that in they put an anti sickness drug into you as well which just goes through the cannula so you don't have to be injected again. 

The cisplatin goes up and then you have another bag of saline to help the cisplatin flush through. And this time you're literally up and down. Your drip is basically on a wheelie thing so you can go to the loos and you're literally up and down to the loo. I mean every 20 minutes if you're anything like me because your kidneys are really really working and you've got all that fluid, extra fluid that's been put into your system so it's not surprising you keep going to the loo. And then I either had the option of having another bag of fluid or else I could drink a couple of litres of water. So I took that option instead so I just drank that. 

 

As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG,...

As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG,...

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Well basically you have to, I mean obviously you get undressed and then you have to insert a Tampax so all the images are, I don't know it somehow affects the images, makes them better. And then you basically lie on a sort of padded bed like you would do in a normal doctor's surgery and you're given an injection with a dye in it so it sort of highlights your veins and arteries and different bits of you. 

And then you're basically slid into this sort of tunnel. And it's quite close, it's probably about 3 inches from your face and they do say just, "You might feel claustrophobic and it's actually very noisy," so you're warned that that's going to happen. And you're asked to sort of take breaths in and breaths out and it is very noisy. I mean it's lots of different, it's all the radio waves sort of bouncing off your body to create this 3D image. 

Some of them sound like a pneumatic drill outside which is really, really noisy and for a moment I did start to get panicked and I thought 'oh my God I just want to get out of here'. But I think as soon as you start thinking of your breathing then you just get control again. Because it's very easy to get yourself panicked. 

And then I was slid out again and you have a board on top of you which somehow helps the images so she moved that because I was having my pelvis and my stomach done. And so she moved that and then I was slid back in and then the same procedure. So all in all it probably took about 40 minutes or something. And it was fine actually so that was that.

 

She explains how she felt when her doctor did not realise that she had understood her diagnosis.

She explains how she felt when her doctor did not realise that she had understood her diagnosis.

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And he came round and sat on my beside and he said "Oh yes you're fine to go, fine to go." And then he obviously thought better of it, he sat back down, he said "Look," he said "you know this is very serious and you are probably going to have a hysterectomy or radiotherapy and chemotherapy." I said "Yeah I know." And he just kept going on and on and on and on just, I think it was the stage that you know people expect you to react a certain way when you're told you've got cancer and because I was sitting in bed you know reading a magazine waiting to be discharged you know he probably looked at me and thought oh I'm not sure whether or not she's actually taking this in because he thought that perhaps if he'd been told he had cancer then he'd be really distressed and crying. 

Which I was really upset about actually because I ended up being in such a state crying that I thought it was really out of order. Actually I think that was one of my negative things actually about my experience that I think doctors have got to be very careful about, about talking to patients about things like that. Because everybody deals with things very, very differently and just because somebody isn't crying doesn't mean that they haven't taken something in or absorbed it. I mean I'm not a stupid person, I am, you know I know people that have had cancer and I do understand a bit about it. So you know he rather upset me actuallly.

 

Her initial fears were that she would not be able to have children then later felt scared that...

Her initial fears were that she would not be able to have children then later felt scared that...

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And I think my initial thing was actually God I'm not going to be able to have children, not I'm going to die. It was God I'm not going to be able to have children, this is all I've ever wanted. And the doctor, the consultant who told me, my Mum had said "Oh that's what women were put on the earth for to have children," and the consultant turned round to me and said "Well I haven't got children." 

And I remember my Mum on the train saying to me "What a waste of a womb," that was our initial feeling God I'm not going to have children because I come from a family where it's a big catholic family and that's, I've got a job, my job is important to me but not nearly as important as family and all the rest of it were. So I think that was my initial fear actually God I'm not going to be able to have children and everything in my life is going to have to be different. No one is going to want to marry me, All my friends are going to be doing all these lovely things with their families and I'm going to be completely left out. 

But I think as time went on it suddenly got to the stage, the fear set in of actually God this is actually cancer. I couldn't just, this could actually be more than me not being able to have children. This could actually be me sort of dying from this and just getting really sick from it. So I think it all becomes relative doesn't it. Your initial fear is one thing and actually as the sort of reality of it sinks in and perhaps as you're further down the line of getting towards your treatment and all the rest of it your fears become slightly different.
 

Explains that she found it difficult telling her friends over the telephone.

Explains that she found it difficult telling her friends over the telephone.

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I mean telling my friends was quite difficult and when I told them as soon as I was diagnosed, I mean a couple of days later I ended up making a few phone calls. I mean sort of life stopped really. I mean I stopped work and I'd been living at home with my parents anyway so, as soon as I found out I'd got cancer I went back home. And I didn't want to come to [the city] and sort of have some great meeting and sort of meet people and I didn't feel like going out to a pub and drinking. I just wanted to sort of be quiet and just be with my family. 

So I ended up phoning them and it was very difficult. I didn't phone everybody. I phoned a few sort of key people, my best friends and just said look you know. I mean most of it was "Hi how are you?" you didn't want to sort of get into too much of things because you didn't want it to be too jolly before you actually had to sort of drop this massive great thing. And to most of them I said "Look I really don't know how to say this to you but I've been diagnosed with cancer." And I suppose most people sort of just either burst into tears on the phone or were just sort of completely sharp intake of breath and then you end up apologising and you say "God I'm really sorry." And so I think with a lot of it it's always having to think about how somebody is going to be affected by your news. I don't suppose you really feel apologetic because actually it's not your fault but it still makes it a very difficult thing to break to somebody.
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