Living with and beyond cancer

But it has obviously, I think it has affected, it’s played a part in us, me not having any children. Not because it was completely medically impossible, I don’t think that is true, but I just think, you know, at the time we were given the option of freezing the embryos. But it was such a difficult time and such a confusing time for us, because at the time of diagnosis I don’t think we, and besides we were young then, so we didn’t really think about, we hadn’t really thought about children and family and all of that. And when this option was given to us I think we just, you know, we felt we had to deal with the illness and, you know, this could probably take a back seat. 

 

It would have been completely possible had I persisted, but for some reason we never actually got round to weighing up the pros and cons and making a decision and sticking with it, which is something at the time it didn’t seem like a big deal, but now in hindsight I feel that’s a major chapter in my life which is probably missing, which needn’t have been missing, you know, had we had the foresight. But, you know, on the whole I can’t complain. I mean the drugs worked fantastically well for me, you know, I’ve still got a good career and, yeah, things are fine, so yes. 

 

 

No, I don’t think it was brushed under the carpet because they have, I think on their part they did actually do what they can. I think they did do what they could at the time because they did repeatedly ask us to come in and, you know, make it or make an appointment for coming and sort of getting the eggs harvested and so on. But we never actually took them up on that offer and we never actually took it seriously. Maybe, I mean on that front they were quite eager to get the process, you know, up and running, but maybe if they had somebody who, like a, you know, not a counsellor but somebody who, an information officer or somebody who could have actually just taken us through the, you know, the pros and the cons of not making this decision. That might have, you know, signalled some sort of alarm bells in us and, you know, amidst all of this other confusion of trying to adjust to this, you know, being diagnosed, and treatment and all of that, maybe it would have made us stop for a bit and think about it. But I don’t think there was any of that. It was just that we were referred to the maternity, you know, this other service and they just kept telling us to come in for our appointment to harvest the eggs. So that might have helped. I don’t know, but no, there wasn’t anything like that at the time.

And they said, ‘Because of the extent of the treatment, very, very strong treatment, the likelihood of me being able to have children later on in life is practically zero’. And my mum just looked at me, because she was at the end of my bed, and she says, ‘You won’t have it done will you?’ And I said, ‘No.’ So the doctor said, ‘Well we won’t talk about it anymore. I’ll leave you and you need to think about it.’ Okay. Fine. 

 

And my dad came in from his normal, he worked in the mornings at work and he came up to London in the, every afternoon. And he said to me, ‘What do you mean you’re not going to have it done? Of course you’ve got to have it done.’ I said, ‘No. I want a normal, when I get out of here I want a normal life.’ I think, you know, people agree with me, normality was everything to me. ‘I want to go back to my job. I want to go home. I want to carry on with my partner. I want to grow older. I want to get married. I want children, you know,’ I had nieces and nephews at that time. ‘And to have them would be everything to me. So that they’re not doing it, no.’ I said, ‘You know, I’ll run that risk. I’ll just have the chemotherapy now. I’ll go home and we’ll just be monitored closely and then basically pray to God it never comes back. I’ll get married later on in life and I’ll have children.’

 

So anyway, unbeknown to me, my parents were having private meetings with my consultants and my professor. And they really kept on saying to my parents, ‘You’ve got to talk her into having it done. She won’t live without it. She had it so bad that she really needs to have it done.’ And my partner used to stay with me Monday to Friday and then he would go home for chill time and my parents would stay with me over the weekend. And I never, you know, I remember this conversation and my parents were in the room with me, and I’d never seen my dad cry, and he just burst into tears. And I just said to him, you know, ‘What’s wrong?’ And he just said to me, ‘If there’s, with every ounce of me I beg you. Please, please, please, please, please have this transplant. You know, if your mother.’ You know, my mum and dad have been married now forty-six years and, you know, ‘I would have married her even if she couldn’t have had children, you know, I loved her, and someone will marry you whether you can have children or not. So please, please, please, please, please have this transplant. You will die without it.’ And I was like, ‘Okay. Fine. Yeah. I’ll do it.’ And they were like, ‘Quick, go and get the consent form now. Quick, go and get it before she changes her mind.’ 

 

I did go in for an ovarian slice. I did before they started the treatment, I did have part of my ovaries frozen. They are still at the hospital, I think, to this day. But again, technology at that time wasn’t that they could defrost them and do all of that back then. I know they can do it now, but I’ve just felt that my age, I’m obviously eleven years older. You know, eleven years and the treatment and the drugs that they’d have to give me, they’re not a hundred per cent sure that I would even be able to carry a child. And also the fact that I now take the HRT. I have done for the last eleven years. So with all of the complications involved and the drugs that they’d have to give me and everything that we felt, we didn’t go down that road. 

 

My husband’s a doctor and he happened to be working at a particular hospital in London and he bumped into a registrar who worked for a consultant there, a gynaecological oncologist who, and the registrar said, "Don't do anything until you've seen this consultant." So [my husband] arranged it through the secretary and asked if we could have a second opinion, and he was willing. But we had to get a letter from the original consultant, so we phoned his secretary and she arranged for a letter to be sent so that I could be referred to the new consultant in London.

 

 

My husband looked on the internet and in the medical library at work to try and find out as much as we could about cervical cancer and the stage that I was at. And I was diagnosed as having a stage 1B, so at least we had something to focus on and to look at, and we knew where roughly we were going.

 

 

Yes initially the consultant in London carried out all the same tests more or less again to be sure what he was looking at. He did then a CT scan, an IVP, which is a test on your kidneys, and did all the internal examination under anaesthetic again, and asked for the slides of all the colposcopies and everything to be sent from the first hospital to the new one so that the department there could have a close look at them, because he works very closely in conjunction with the microbiology department. And then he tried to do a cone biopsy, a large cone biopsy which he said might do the trick or might not, so he tried that but unfortunately the margins weren't clear enough - there has to be a certain margin around a tumour before they'll say that it's been sufficiently removed - the margins weren't clear enough, so he said, again we had a big meeting that time with several members of his team, the registrar, the Macmillan nurse, everybody was there, and we had a very open discussion about what was available. And it came down to the fact that either it was going to have to be a hysterectomy or there had just been a new operation carried out in France that they were willing to try here if I was willing to let them do it, and that was the radical trachelectomy.

 

 

We felt we had nothing to lose because if it didn't work then they could still do the hysterectomy afterwards, so we thought it had to be worth a try to see if it would give us the results that we needed. So I didn't actually know until I'd woken up from the anaesthetic what they were going to do, but they were successful.

 

 

From having the radical trachelectomy. They said they would do what's called a frozen section, which is where they take a slice of, remove the tumour and send it to the lab immediately while you're still under anaesthetic and they phone the results back directly, so that they knew that they'd removed all the tumour. If it hadn't been clear then they would have proceeded on to a hysterectomy.

 

 

No, not until I woke up

So you were asking me about obviously what it’s like being infertile. As I say, friends, pregnant, children, and you’d go to see them and they’re holding a baby and you think, ‘God I’d give an arm, I know, an arm to have that.’ And even more so when your family, my brother, my sister had two children when I was ill, but then my brother met his, now, wife and he had children. And I remember going to the hospital and just opening the door and seeing him with children, and it breaks your heart. I would be a liar if it didn’t. And it still does even today, I’ve got nieces and nephews now that are older, a lot older, my niece is sixteen and, you know, she’s beautiful, and my nephew is he’s just a, they’re just a joy, my nieces and my nephews they’re beautiful. And I love them like they’re my own children. I’d do anything for them. I’d give them, you know, if they say to me, ‘Can I have that?’ I go, ‘Yeah okay.’ And I shouldn’t but I do. 

 

Last year it was my sixteen-year-old niece, it was her prom and we went up to London to get her dress. Oh she looked beautiful. And I’m told she looks a lot like me when I was that age. And I wasn’t here, we were on holiday at the time, and I came home and they showed me the video of it, and she walked out and I just burst into tears. My sister was crying. And again we’ve got such a good relationship now she rings me up and we talk on the phone and in all honesty it kills me. But if it meant that I’m alive then it’s the only price to pay. I had to have the transplant otherwise I would have died.

 

So therefore children just weren’t an option but I would have given, I’d give an arm, an absolute arm to have my own child. And certainly, you know, most people say I’ve got the best husband in the world. He’s turned my life around and, you know, to have his child would be everything to me. But it’s not possible, but we have one another, and all I have to, all I do is I have days when I cry, today being one of them, and all I do is I sit there and I’m thankful for what I have got. And a good family. I’ve got good friends. And the fact that I haven’t got children, I’ve got most, I’ve got more than most people have got, and I’m just thankful for what I have got. And I’m not greedy. I’ll leave it at that, you know, I’m not greedy, I won’t be greedy, I’ve got what I’ve got, and what I’ve survived, I think, you know, ‘I’ll stick with that and don’t be greedy.’ So that’s what I do. Stick with that.

 

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.

 

 

No. None whatsoever. They, it has no effect on your fertility, I did, because I remarried, I really looked into this. And of course one of the problems you have now is everyone is so risk averse and concerned about being sued, so it’s very difficult to get real information. But some consultants are more willing to stick their neck out on the line than others. And I do know of two cases where people got pregnant on Glivec and went on to have healthy children. 

 

I believe it might be outdated, but the standard information at the time that I was given, which was in about to 2004, for getting pregnant, was that you should come off Glivec because they did not know the effect it would have on the children. However, that said, anybody who’d come off had never gained full remission when they tried to go back on it. And the risks of staying on Glivec to any child were very, very small. They weren’t brain damage or heart tumours or anything like that. You might have had a wonky, missing a toe or something like that. They weren’t anything which worried me particularly but that’s a personal thing and there might now be more information about it.

 

 

No.

 

 

[mm]

 

 

Yes, I don’t think you’d be recommended to get pregnant, but that is only because there wasn’t the information, the research or the statistics to support it. But there are people who’ve got pregnant on it, have babies and are fine.

 

 

At that time, well I married somebody who wanted children, so we did look into it.

 

 

Didn’t try not to. 

 

 

But it didn’t happen.