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Interview 19

Age at interview: 27
Age at diagnosis: 25
Brief Outline: Hodgkins Disease diagnosed in 2004 after finding a lump in her neck. Eight cycles of ABVD chemotherapy put her into remission.
Background: Civil Servant, cohabiting, no children. Ethnic background: White British.

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She found a lump in her neck which was dismissed by her GP on two occasions . On a third visit when the lumps were getting bigger she was referred to a surgeon for a biopsy, which showed she had Hodgkin's Disease. She was very shocked to learn that she had cancer and that she would need chemotherapy. 

She was also concerned about the possible effect of treatment on her future fertility. Chemotherapy was scheduled to start six weeks after diagnosis, allowing her time to come to terms with the diagnosis and to look into possible ways to conserve her fertility. However, she found that this time frame was not long enough to have sufficiently detailed discussions with staff about the possibilites and implications of embryo storage or for her local Health Trust to decide whether they would fund it, so she didn't feel able to go down this route.

Six chemotherapy cycles were initially scheduled but she had to have eight in all. The chemotherapy (ABVD) was administered via a Hickman line and she had seven infections over the course of six months. She stayed off work throughout her treatment to avoid the risk of infection that went with the level of public contact her job entailed, but returned to work shortly after her last treatment. She has been in remission ever since and has not yet put her fertility to the test.
 
 

Describes how a central line was inserted near her collar bone under a local anaesthetic and...

Describes how a central line was inserted near her collar bone under a local anaesthetic and...

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The procedure took about an hour to put in. They make a small incision in your collarbone, by your collarbone and they thread the plastic tube down into the vein. And then it comes out in your chest and then you have a long tube with two little attachments on it.

Well do they do that under a general anaesthetic?

No that's all done under local anaesthetic, which is a very strange sensation, people pushing and pulling things into your chest and out of your chest.

You can see it but you can't feel anything?

Yeah, you can just feel a little bit of pulling and tugging. But no, you can feel a little bit of warmth because you can feel sort of blood trickling out, which I guess is normal but a little bit alarming. Oh yeah it wasn't one of the most pleasant experiences.

And what was it like taking it out?

Taking it out was much, much quicker, was about twenty minutes. So a lot of pulling, the doctor looking very strange and trying to pull this thing out of your chest, a bit of a weird experience.

Presumably you've just got a tiny little scar from the Hickman line?

Yeah a couple of little scars' the one where they put it in; the one where the tube comes out of your chest, which is quite a prominent scar but I guess it doesn't really bother you; and then the little nick that they make to release all the skin that grows around the tube inside. Yeah.

 

Wonders whether her central line should have been changed earlier because she had seven...

Wonders whether her central line should have been changed earlier because she had seven...

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Tell me a bit more about the episodes of infection you had with your Hickman line. How often did that happen?

I had the Hickman line in for six months and I had seven infections. The worst one I ended up in hospital for six days. They would happen when the blood counts dipped really, really low and my neutrophil count was quite low. They picked up on most of them quite quickly through the blood tests that they would do every couple of days. Had intravenous antibiotics for all of them and took all the antibiotics. But they made things doubly as tough really because the antibiotics would make you feel a bit unwell as well. And the intravenous antibiotics they put into the Hickman line itself were a little unpleasant. But I got to know the symptoms of them, the sort of increased pulse rate and the feeling a bit light-headed and unsteady on your feet, and got to be a little bit obsessed about checking my temperature, but I think a lot of people have that. 

So they kept the same Hickman line in all the time. They didn't change it?

They didn't change it. With hindsight I think it should have been changed quite early on. They took it out before the last month of treatment. So I had two treatments through a vein in the arm. And it was when I had that that I was actually quite glad they'd kept the Hickman line in because one of the drugs is quite abrasive and can really burn and damage the veins it goes into. So the last two treatments were quite painful. But yeah, the whole Hickman line procedure is not that pleasant and I think they just wanted to minimise the surgery involved in putting the line in and taking it out.

 

Declined egg harvesting as she'd had insufficient time with experts to discuss the practical and...

Declined egg harvesting as she'd had insufficient time with experts to discuss the practical and...

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You said earlier that you spent time considering whether you should do anything about preserving your fertility. What did you decide?

In the end we decided not to do anything. I think that was the hardest thing. There seems to be so little support and advice out there for people. It took four weeks for an appointment to come through to talk to somebody, and then she was talking about really needing a lot more time than we had to actually ensure that a large enough group of embryos could be created and stored. And from the financial side as well that was quite a worry because it is an expensive treatment. And although there is help available on the NHS for people in my situation, it was taking such a long time for the local NHS Trust to make a decision whether they would help with the funding, time wasn't on our side from that side of things. 

Did you have any medical insurance?

No.

So you would have had to have paid?

Mmmm.

What sort of sum are we talking about?

I think we were talking sort of three thousand, and when you're not expecting to have to suddenly lose that much money then that's quite a shock. I had issues with the whole process as well. I didn't necessarily agree with it ethically. But again I'd had so little time with staff in the fertility clinic to talk about these issues I felt I couldn't put all those fears out of my mind and worries out of my mind. So in the end we decided to just take our chances and see what would happen. The thing with the ABVD chemo is there is no certainty that it will damage your fertility, so the chances are quite good that everything will go on as normal in the future. I felt I just had to take those chances.

What were the ethical things you were worried about?

I think at that time there'd been a lot in the press about storage of embryos and unused embryos and how they were being used for research without authorisation. And I can't quite remember all of the things that were going through my mind at the time but I know that there were a number of issues that I wasn't totally happy with. I just felt with everything else that we were going to have to go through I couldn't put myself through weeks of very intrusive extra treatment when I had to get to grips with the Hodgkin's and the chemo that was about to happen as well. And I still think that for me I made the right decision in not doing anything.

What would they have done?

They would have harvested eggs from myself and used sperm from my partner and created embryos which they would have frozen. One of the silly things was that the local NHS Trust would pay for freezing the embryos for a year, which is slightly silly in my mind because doctors tell you with, had I been having treatment for nearly a year, the doctors tell you not to try to conceive for at least two years afterwards. So, and that seemed slightly pointless, and then that would have meant even more money because we would have had to pay for the extra couple of years storage. And I think the financial concern on that was quite big as well. So obviously you've got concerns financially about' how you're going to manage if you're not going to be working; how long you might be off work for; transport costs to and from hospitals. It all adds up really.

 

Thinks that patients should have a bit more say in planning their treatment schedules.

Thinks that patients should have a bit more say in planning their treatment schedules.

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How did you feel about treatment decisions? Did you feel that you were involved in those at all or was it just a case of them telling you 'this is what you're going to have'?

No. I didn't feel involved in the slightest. I think that was one of the big things. I felt like you weren't in control of anything. My consultant had decided exactly what treatment I was going to have, when I was going to have it. And he wouldn't discuss it with me, which I wasn't very happy about. I had reasons that I didn't particularly want the treatment on the day of the week that he specified. And I told him that I wasn't very happy with things as they were. And we eventually came to a compromise, which I think was great because it made me feel as if I was having a little bit of input into my life. And then things were a lot better for me. I felt like I could have time to spend with my family because I'd have the weekends when I was feeling a little bit healthier. Yeah I think you have to have a certain level of trust in your consultant and your medical team because they deal with this every day. But I do think that the patients ought to have a little bit of say in things or a little bit of flexibility possibly involved because otherwise you're just losing all of your independence and all of your control.

So they wanted you to have your treatment on Fridays?

On a Friday.

That would have wiped out your weekend?

Yeah. I think you have to give yourself something to look forward to, and by having a treatment on a Friday that would wipe out your entire weekend, the time when your partner and your family are around and you can spend time with them. And having had, if you'd had treatment on a Friday you wouldn't have been able to do that and have the quality time that you wanted with them. Yeah we made the compromise and had my treatment on a Wednesday. So by the weekend just starting to feel a bit more human and you could actually do things, which was great. Otherwise you'd just feel like you weren't seeing anybody or doing anything all week really I think.

 

Says at first her consultant didn't like being questioned by her so she told him she didn't like...

Says at first her consultant didn't like being questioned by her so she told him she didn't like...

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Initially it wasn't, I didn't have a very good relationship with my consultant. He had the view of, 'You will do what I say and not dare to question me'. But once we'd had a little discussion or two and we'd kind of evened out the doctor- patient relationship slightly. I didn't like being treated as a shell, as a disease. I was a person. I wanted to be treated with a little bit more respect and humanity. And perhaps I shouldn't have done but I told my consultant that, and from then on we've got on famously and we get on really, really well. 

I wonder if your age had anything to do with his attitude towards you?

Possibly. He was very much old school medicine. And I don't think many people would have said what I said to him because he was quite, he had a bit of a reputation for being a sort of old school scary doctor. And I think a couple of the nurses were a little bit, wouldn't have dared question him as well, but I was the patient, I had nothing to lose by doing so. And I think that really helped. Yeah I get on really well with him now and have total respect for him.

 

Was scared when told she'd need chemotherapy and worried about her fertility; even after...

Was scared when told she'd need chemotherapy and worried about her fertility; even after...

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I was really shocked when I found out that the only way the consultant thought to go treatment-wise was chemotherapy. I think it's such an emotive word and just brings up so many other issues, especially being a young female, wondering what would happen, whether in the future I'd be able to have children. And I think that was the most scary thing at that time to me. 

I think I was very lucky in that we didn't need to start treatment straight away. And the prognosis was so good, so there were times to investigate whether we wanted to do anything to ensure that we would be able to have children in the future. So for these reasons I didn't start my chemotherapy for about six weeks after my diagnosis, which I think was helpful for me as well so I could get more information from other sources and help myself prepare mentally and physically for the chemo. I was told I'd probably need six months of chemo, which then eventually started in the middle of August 2004. 

Didn't know how I was going to cope with it. I think that was the scariest moment of my life so far, the morning I had to go down for my first chemo. My parents, my partner were so supportive and they all came with me on that first day. And I met four most wonderful nurses and I think it was their knowledge and expertise and their day-to-day dealing with everything that helped me get through the chemo. It's quite a scary thing to go into a day unit with other people having chemo and different treatments and sit there for sort of five hours just watching a load of really toxic drugs enter your system and not knowing how it's going to affect you.

 

Being told she was in remission was one of the best feelings and going back to work gave her an...

Being told she was in remission was one of the best feelings and going back to work gave her an...

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But I got to the end of the eight months and then that time was tense I think but very, very stressful not knowing which way it was going to go and whether that really would be the end of all the treatment. But finally got given the 'all clear' in April, which was one of the best feelings. 

Although I don't think it gave me total closure and I don't think there ever will be that total closure, but just knowing that that chapter was over was such a relief. And I've been amazed ever since about how quickly things have started to get back to normal and started feeling more energetic and hair came back so quickly and I managed to go back to work seven weeks after my last treatment, which was absolutely terrific. I think it was the best thing that I could have done. Just to be back into a bit of a routine and amongst people and getting involved in things again. You see such an amazing mental boost. 

And thankfully ever since everything's been ok and continue having fantastic treatment from all the medical staff. And I think the whole experience has been so enlightening. I've found out a lot about myself. Found some strength which I never thought I had, and met some amazing people, and I actually feel really lucky, I think, to have gone through it and found the strength that I didn't think I'd have, and developed a whole new attitude and become such a much stronger person. It's been quite a surprising couple of years.

 

Went down to half pay after six months off sick but she didn't worry about paying the mortgage...

Went down to half pay after six months off sick but she didn't worry about paying the mortgage...

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So were there any financial implications? Did you lose income?

Yeah. I was very lucky with our sick pay scheme with my job. I'd managed to keep my full-time salary for six months. I was off work for ten months altogether so did lose some money towards the end, which'

What happened after the six months? Did you go to half pay or no pay?

Half pay for, I would have been entitled to half pay for another six months. But living in the south-east of England your living costs are so high you naturally have concerns about how you're going to pay your mortgage and all of your bills and just keep yourself afloat. But I had been quite lucky because I'd had a critical illness insurance policy. Insurance companies being as they are it took a little while to get all that sorted out but that was such a weight off my mind knowing that the financial side wasn't going to be an issue. It took about six months to sort all of that out but it was so good knowing that you wouldn't have to worry about whether you could pay your mortgage.

 

Felt defeminised by treatment: she lost weight, all her hair, her periods stopped and she had a...

Felt defeminised by treatment: she lost weight, all her hair, her periods stopped and she had a...

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How do you feel about your body image?

Now, OK. When I was having treatment I felt quite de-feminised' you've lost all your hair everywhere, you've got a tube coming out of your chest, my periods had stopped. So really almost every feminine bit about you had been altered with, and that felt a bit unnatural, and I'd lost quite a lot of weight at the start with my treatments. But now absolutely fine. I feel healthy, I feel normal yeah, no problems now.

Did your periods get back to normal?

Yeah within about four weeks of stopping treatment. I was quite surprised about how quickly that had got back to normal.

How did your partner help you cope with those feelings of being de-feminised?

He understood completely what I was talking about. And we had a strong enough relationship that I knew that it wasn't going to affect the way he felt about me in the long run. And we both knew as well that these feelings wouldn't last forever and the things that I felt were wrong at that time would right themselves again. You just had to keep thinking how those were short-term things. Give it a few more months and you'll be back to normal. And, you know, that is what happens.

 

Used a charity website chat-room but found disappointingly few people of her own age there.

Used a charity website chat-room but found disappointingly few people of her own age there.

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Have you been in touch with any support organisations or self help groups at all?

Yeah I was in touch with a support organisation and they run a message board and chat room through their website, so that puts me in touch with other sufferers of lymphoma, which is quite helpful just to know that there were other people going through things, having to deal with the same sort of things you're dealing with. And that there were other people that have got through it as well because at times although you know your prognosis is good it can be actually difficult seeing that, the end of it all.

Did you find other people your kind of age on that chat room?

I had found somebody else who didn't have Hodgkin's, who'd had non-Hodgkin's lymphoma, but only the one person.

I thought it was aimed at young people, that site.

Yeah it is but there seemed to be a lot more people with non-Hodgkin's, which have that slightly older age group, so there don't seem to be an awful lot of people in their twenties on there.

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