Has everybody been supportive to you? You’ve said a lot of nice things about a lot of people?

I think so.

Are there any exceptions, surprises?

Most of the surprises have been good. I’ve been really touched by the way that people, by ways that people find to be supportive. Particularly people that are sort of on the edge of my circle of friends. Rather than mean, I’ve had no surprises really from my very close friends. But somebody e-mailed me and said, ‘I’m not really sure how to help you, because I want to do something but I’m not sure what the best thing to do is. And I wondered what you were reading at the moment because I want to send you some books. And I was really touched that that was their approach, that that’s what they decided to do. They clearly wanted to help. They didn’t really know how. They don’t live nearby but they wanted to do something. I thought that was lovely.

I suppose, I think this, the second time round one of the things that I’ve found difficult is that it’s less interesting and exciting for people. And I say exciting in a, you know, I don’t think people go, ‘Yeah hey shes ill. That’s really exciting. But I think it makes me a more interesting slightly unusual friend to have. And I guess in a way I have felt disappointed with the relapse that there hasn’t been the same level of communication from friends that there was the first time round. And that’s partly because people think, ‘Well shes recovered before. I’m sure shell recover again. And it’s partly because I find it boring the second time around. I imagine other people do. And I think it’s I did find it more lonely this time round because whilst I prefer to do the treatment and so on by myself, what I really appreciated the first time round was the number of e-mails and phone messages and cards and letters and stuff that I got. And there was a lot less of that this time around. And I did feel kind of a bit disappointed in that because I found that really comforting and supportive.

And I think there is an assumption even from my close friends that it’s less of a big deal the second time round. But on the whole I’ve just been fantastically lucky with the support. I think on the whole people are good. That’s certainly what I’ve discovered that I don’t suppose I am incredibly unusual in having very positive experience of people, I don’t think theres anything unique about me that means that I happen to know all the good people and everybody else gets the dross. You know, I think that people are good. I think people like to be given, like to be told how to help. And if you can do that people really appreciate it and respond very well to that. And I’ve been really touched by how people have.

My daughter was younger obviously the first time round. She was only one-and-a-half the first time round. She was four when I was diagnosed the second time, and it’s quite difficult to discuss things with a four-year-old without having anything concrete that you can show them or explain to them. And actually the act of me taking tablets was something that she understood, so she could, you know, I explained to her that I had a group of bad cells that had got together in a cluster in my chest and made a lump, and that the only way to get rid of them was to take some really very strong medicine. Now if I had just been going off to hospital and having all my drugs there she wouldn’t have had any kind of reference points. And as it was I was able to say, ‘And these are the tablets, these are the very strong tablets which, yes, are making me a bit sick and meaning that I can’t always play in the same way that I normally do, but they are also the ones that are making me better. So she had a reference point, something which she could understand and relate to, because when shes not well she has Calpol or whatever. And I think that in many ways made it easier to talk about with her because there was something concrete for her to understand.

Did any of your doctors offer you any advice about talking to your daughter about it?

They didn’t particularly but I didn’t ask them particularly. Again that was something that I talked more with friends and my family about. And in fact she has always been really interested in the body. I’m sure that’s because having medical people in the family, shes got human body books and stuff and she thinks that that’s all very interesting. So she kind of had a grounding in understanding what germs were and shes got a book that talks about blood, how blood goes around the, you know, how blood carries things around the body and stuff, and about cells, and shes all, shes quite interested in that kind of thing. So it was actually not too big a leap for me to then start talking about a group of cells that had gone a bit bad. And she was very comfortable with that kind of concept.

One of the things we were careful to do was we talked to the school, because what I didn’t want to happen, we spoke to our daughter in a very positive way, and although I was ill, we talked about the fact that I would be getting better and that these tablets were going to make me better. What I didn’t want, because I was worried that I would start to look quite ill, what I didn’t want was for conversations that were happening in her friends’ parents, at her friends’ breakfast tables about, ‘Oh isn’t her mother looking ill. I didn’t want that kind of thing to be in the playground for her, so that her friends were saying, ‘Oh my mummy says your mummy’s not very well. So we talked to the school and we talked to some of her friends’ parents to avoid that, so that the messages she was getting from them was, ‘Yes mummy’s not very well but she is going to get better soon.

And I’m glad I did because she did talk to her teacher about it at one stage. She just went up to her and said, ‘I need to tell you that my mummy’s not very well and it’s making me a bit sad. And her teacher said, ‘Yes I know and that is a bit sad for you at the moment because mummy’s not feeling well but shes going to be better really soon. So, you know, we were able to have consistent messaging, if you like, at home and at school and with her friends and her friends’ parents.

What was your employer like?

Again, in both cases fantastically helpful, wanting to do everything they could to support me. I pushed myself too hard and tried to go into work when I shouldn’t have done on this occasion. And they very quickly made sure that I was at home and safe rather than trying to push myself at work. And on both occasions I found it really hard to give up jobs that I was really engaged in and enjoyed and felt really strongly about wanting to carry on doing. And in both cases they bought in people to cover my work as though I was on maternity leave, and maintained communication with me and in both cases were really supportive and helpful. I’ve been incredibly lucky.

But then again in both companies they tried to fix it so that holidays were kind of tacked on to the end of sick leave or so that I wasn’t officially sick until later on if I possibly could be, and stuff like that, and have paid me for holiday that I haven’t taken, and all those kind of things. So they’ve been really flexible and helpful. And my manager has kept me up-to-date, as have my team, with what’s being going on. And I’ve felt really supported by work, as well as at home.

And I mean I think there are times when I’ve felt really anxious about going back to work because it’s very difficult to go back. And I do feel quite detached from it because with the best will in the world I am, you know, even though they’re updating me, it’s not the same as being there and doing the stuff. So it is nerve racking to go back to work. But again they’re really being helpful with finding ways for me to cut down my commuting time and maybe spend some time working from home, and all those kind of things, and to ease me back into the job. So I do feel very well supported.

How did it work out financially? Did you lose any pay?

Yes. Not the first time round. The first time round I had sick pay for the full, the whole time I was off. The second time round because I had been in the job less than two years my sick pay wasn’t nearly as good. And yeah, I went onto statutory sick pay after I’d been off sick for three months. Accidentally I have an insurance policy, one of those that was sold when we got the mortgage. And it was free for the first six months and then you started paying for it and we just didn’t stop. We just let the payments go out so it was kind of accidental, but thank goodness I did. Again I’m really lucky and I keep saying that and I am, my parents can afford to help me if I’m not earning. And I have a partner, a husband who is healthy and can earn and I know that, I know very well that I’m in a very fortunate position. Because yeah, the money ran out after three months on this occasion.

How do you think your parents coped with the whole thing in general?

I think they found it really difficult actually. I think it must be very, well, when your child’s ill, even if it’s just a cold or something, it’s very worrying and I know that now because I’m a parent. And when I think about how I would feel if my daughter had to go through chemotherapy and all the kind of stuff that I’ve been doing, I would just be beside myself. And they are doctors and theres nothing they can do. I mean that must make them feel so impotent and unhappy. And I know it does and we had a’, I have three siblings, I have two sisters and a brother, and I do remember that, that I had a couple of conversations with them where they were saying, ‘We just want you to know that Mum and Dad are behaving a little bit madly at the moment. And they are, it is noticeable, they are terribly anxious. It’s not you being mad, it’s them.

I think my dad to begin with wanted to find something less sinister that it could be. And was saying, ‘Well we should get a second opinion’, and, ‘I’ve seen cases where’, and dredging from his memory all sorts of one-off cases where something had mimicked lymphoma or whatever. And I could see that he was desperate for it to be a misdiagnosis. And because that was something he could then take control of by finding me another doctor that he knew that would be able to magically say, ‘Oh gosh, that terrible doctor is a complete charlatan whose misdiagnosed your daughter. How terrible. And we could all go, ‘Oh phew, thank goodness for that. And I think he held on to that for longer than was realistic.

And I remember one particular occasion before I started treatment but after I had been diagnosed, and we met up for lunch, my mum, my dad and me and my sister, who is also a doctor. And dad was still saying, ‘Well I think we need to get you a second diagnosis. And I’ve seen cases’ and so on. And afterwards my sister and I went for a walk and she said, ‘I’ve just sat opposite you through lunch and I’m looking at you and you’re a Hodgkin’s patient and I can see it now. It’s really clear to me. You look like a Hodgkin’s patient. I see your lump. It’s a Hodgkin’s lump. You do have Hodgkin’s disease and I don’t want you to take from Dad’s anxiety any false hope that we can go and get a second diagnosis, because I truly believe that that’s what you have. And that was what I mean, I said before that I found my sister really very supportive and helpful from a medical point of view. And that is an example of where she was really very helpful.

And my mum I think was also, found it really difficult but was able to help in, to support in quite a practical way by visiting, by coming and looking after my family when I wasn’t able to, and making me oh God one time the only thing that I fancied eating was chicken super-noodles so she made them for me and brought them up to me in bed. She was able to care for me in a very maternal way and I think she probably found that quite helpful in terms of responding to it.

But I think they both found it very difficult. You know, and I know that so did my grandparents, you know, who said over and over again that they didn’t think it was just that I should be having this when it ought to be them somehow and, you know I think that is a difficult thing for a generation, an older generation to accept that somebody younger is ill.

You said to me earlier that you had loads of infections?

Oh yeah, I did, yeah.

Is it difficult to avoid that with having a small child who’s
Yeah.

t school?

Yeah. Since being in remission the first time I seem to get more colds and coughs that go more quickly to my chest than other people do normally. And I think I am pretty infection prone but yeah, I’ve also got a four-year-old who brings all sorts of runny noses and stuff home from school.

I did have quite an alarming period in hospital during my first chemotherapy actually, which is probably worth mentioning. Because I became neutropenic so quickly, on just one occasion I had a really fairly serious infection. And I remember waking up. Well I remember putting my daughter to bed for her nap and thinking, Do you know I think I’m going to go to bed to. And I woke up about two hours later when she woke up, and realised that I was really quite seriously ill. And my husband was at work and I rang my sister and I said, I’m pretty sur, well I had a very high temperature. I had a temperature of thirty-eight-and-a-half, and I said, I’ve got a very high temperature and I feel terrible and I don’t think I know how to get the bus to the hospital from her. And she was so alarmed by the way I was sounding that she just, she was in the middle of a mock exam actually and she just dropped everything and came. And so did my friend, and he looked after my daughter while my sister took me to the hospital.

And she says that she left me at the hospital being, you know, immediately I was put on an antibiotic and a saline drip. And she felt when she left the hospital that she wasn’t sure that she was going to see me again. She really was that concerned about the whole thing. And I just remember feeling terribly, terribly ill like I had really bad flu. And suddenly I was lying in a room in A&E and there were dozens of doctors everywhere. And I thought, Goh dear, how many doctors does it need just to put me onto a drip But looking back on it and filling in the gaps, I did have a bit of a crisis in terms of my blood pressure plummeting, and there was a real sense of anxiety and urgency that I was very, very sick.

And my husband was sending out emails to up-date people on my progress that said things like, ‘shes stable and being given fluids’ and stuff. And that was something I actually found that whole episode, I was then in hospital for a further week. That was something I found quite difficult to come to terms with because it happened so very suddenly. I went from feeling fine to feeling ill, but also I really didn’t understand what was going on at the time. And I was desperately ill and didn’t know, didn’t understand. And it took me quite a long time to come to terms with that.

And that was a lesson to me in acting quickly on a high temperature because my deterioration was extremely rapid. So within two hours I was really very seriously ill. And I think that up until then I probably hadn’t taken quite seriously enough some of the, you know, ‘If you feel ill, if you have a temperature, you need to get in touch with A&E straight away. I don’t think I’d taken that seriously until it happened.

And in fact when I was first diagnosed I was offered the opportunity to egg harvest.

Really?

Yeah. And I discussed that with my husband and we turned it down because we decided that unless I had been in remission for at least five years we wouldn’t want to have another child anyway. We would feel that that was unfair given that we felt slightly insecure about my longer term health. And so, yeah, there is a real kind of weight of anxiety and guilt that comes with having a child and being seriously ill.

Does that mean that the treatment you’ve had has probably had an effect on your fertility?

Yeah I think it probably has although it’s difficult to say because I come from a family with a medical history of early menopause. So I am not, I don’t know how much of my fertility would have been impacted by that. But certainly I, well actually I did, after the first, after the ABVD I did go back to having relatively normal periods but I haven’t had one for months and months and months now, so… I imagine it has been impacted but weve taken the decision to stop at one child anyway.

Did they tell you though that it might affect your fertility?

Yeah. Yeah on both occasions they told me that it might affect my fertility, and actually that, for me that was something which did not cause me a great deal of pain or, you know, emotional pain. Were very lucky. We have a very bright and wonderful little girl and shes more than enough.

What do you think, you said a bit about the nurses and the doctors before, what’s your general opinion of the health professionals that looked after you?

They’ve been outstanding. I have been really, really fortunate with the health professionals that I’ve had. And actually, as I come across yet another excellent chemotherapy nurse you have to assume that this is the standard. You know, I can’t just be lucky with every single NHS employee I come across. The nurses, do you know, one of the things that makes chemotherapy nurses, I think, seem really, really good is, I don’t know whether they have a skill of remembering detail about people or whether they’re just very careful to look at peoples files very closely before they see them but, you know, they knew my daughter’s name, and when I went back they would ask after her. And they see thousands of people so theres absolutely no reason why they should remember her name, but they do. And it’s that kind of personal treatment that makes a big difference. When you feel like somebody has personal investment in you that’s a very important thing. And I think that the nursing staff, to a man and woman were as, were that good. And you do feel like you’re being, you know, that they’re willing you to get better, they’re willing this to be successful. And it’s true of the admin staff as well, although I think sometimes clinic arrangements could perhaps be administratively enhanced. But that’s just the way it is.

So really from that point of view the radiotherapy I was very lucky with. I worked very hard not to make it tire me out. I think I had, people had talked to me about how they responded to radiotherapy before I had mine, and people had said they got very tired, but that part of the tiredness came from every day having to get to the hospital and the kind of stress of getting to the hospital and being to appointments on time and then hanging around and all the rest of it.

So I tried to treat it like a kind of daily commute, because I’ve always worked and I’m very used to commuting. So I tried to think of it in those terms and that actually was very successful for me. And if I had radiotherapy in the morning I would get up when my husband and daughter got up for school. I would get up too and go as though I were going to work. And if I was going in the afternoon I would get up in the morning anyway and go to the gym or, you know, just be doing something that meant I had routine in my day, and radiotherapy was just part of that. And that worked I think quite successfully for me because I didn’t have the same kind of tiredness that I know a lot of people have reported from radiotherapy.

And I went in every day for three weeks, every weekday for three weeks, and had radiation to, from just below my chin to sort of the middle of my chest, so taking in the whole field that, of the two sites, my neck and my chest.

And they did the, they did it from my front and then turned the machine around and did my back as well because the site is fairly central in my body front-to-back as well as side-to-side. So it’s fairly central. And the radiotherapy, I actually have been fantastically lucky in terms of side effects and so on. My skin round my neck is quite sore and peeling now as though I have fairly serious sunburn or something, but other than that, and I have been absolutely lathering on the E45 cream, and the rest of my skin has been fine. I did get a very sore throat, although they protected some of my throat with lead it wasn’t fully protected, and I haven’t been able to eat a proper diet, everything gets mashed up into soup. Since about halfway through the radiotherapy, from about the, towards the end of the second week I stopped being able to eat very much at all.

But my throat is almost recovered now so that’s kind of ten days on from radiotherapy. And my neck is, will be fine I’m sure in another couple of days.

One of the main differences actually was that with ABVD all of my drugs, all of my chemotherapy drugs were given in hospital. So I went in for a day every fortnight and had them all intravenously. With ChlVPP I went in to hospital in a cycle. I went into hospital twice, in a 28-day cycle I went into hospital on Day 1 and Day 8 for intravenous drugs, but for days 1 to 14 I was taking drugs orally at home. So the vast majority of my treatment was at home, which’ One of the hardest things about having chemotherapy is hanging around for it, waiting for it, sitting in hospitals for hours on end waiting for the pharmacy to make up the drugs. And it’s absolutely fantastic being able to just take the drugs at home. That made a massive difference to the way that I felt able to cope with the treatment.

So although it was quite hard work, again I found that over a period of months, I had three cycles of ChlVPP over three 28-day cycles, so three months. And it was, again it was cumulative. So by the end of the treatment I was thinking, ‘I really don’t think I can have any more of these drugs’, and I was exhausted again. Less nausea, I was very sick the first time round and I was very sick on the first cycle of ChlVPP, but then the anti-sickness drugs completely sorted that and I didn’t have any sickness after that. I was exhausted and I felt just generally under the weather. I described it to a friend like feeling like I was being poisoned, which I suppose in a way I was being, you know, the drugs are very toxic. So I just felt generally unwell but it was actually far more manageable than I found ABVD.

But it was actually very liberating taking tablets at home, which happened with ChlVPP. And yeah that was actually, that was much better, although it’s a vast number of tablets to take. I was taking I think 13 in one go, which is boring but I would far sooner take 13 tablets than sit in a hospital waiting room for four hours or whatever waiting for the pharmacy to make the drugs up. So that was good.

I lost my hair completely the first time and I didn’t lose it this second time. The first time it fell out in clumps quite quickly a week or two after my first lot of chemotherapy. And so I decided to shave it and wear wigs. And I went to the NHS wig people, the hospital wig people, and that was probably one of the most miserable days of the whole experience. My husband came with me and we went to the prosthetics department and waited with the people waiting for artificial limbs and all sorts. And had a horrible appointment with a woman who gave me a catalogue and said, ‘Well pick one of those. And I said, ‘But how will I know what it looks like?’ And she said, ‘Well you’ve just got to pick one and well order it. And I said, ‘Well I just don’t feel able to do that. And we left and I just said to my husband that I can’t do that. That’s too miserable. I just felt horrible that it was going to be so obviously a wig and, you know, what was I’ I just felt completely miserable that day.

And somebody recommended a wig suppliers in Notting Hill, called Trendco. And I said, ‘Well I guess I could try going there and see whether if you buy a wig privately you get more choice than just picking it out of a not very nice catalogue. And they were absolutely brilliant and treated it like a hair appointment. It was like going to a salon for a hair appointment. And this unbelievably patient woman sat me down and talked to me about what my hair, I hadn’t lost my hair by then so talked to me about my hair and what I liked about it and so on. And talked to me about what I wanted to look like with a wig. And then went off and came back with probably twenty boxes of wigs, and started trying them on, and but really carefully, was really careful of my feelings and I was absolutely determined that I wanted to look exactly like I had looked and so she needed to find me one that was exactly like my hair, and she did a very good job of trying that. And when she realised I had relaxed a little bit she said, ‘If you want to you can have a bit of fun with this and you actually don’t have to stick to what your hair’s like now. You can try other things too.

And so from having below my shoulder-length straight blonde hair, the wig I ended up getting and wearing absolutely to death was a short, sharp, dark red bob. And it was brilliant. I loved it and felt really confident and happy with it. And the experience was so totally different from the horrible, you know, treating it like a kind of treatment. And were all fairly vain, I think, about our appearance or, speaking for myself, I am. And it made a massive difference to be treated in such a way as it was like having a hair appointment. And she put the wig on and when I chose it she cut it to the shape of my face and everything. And it was brilliant to the point where actually one night in the pub when I was wearing it somebody was so convinced it was my own hair that he demanded proof and went squirreling around in the wig to look for the base of the wig. And was then horrified of course when he found that it was a wig. But I was delighted because it meant that it really did look like me, looked like I was kind of whole.

I actually found losing my eyelashes and my eyebrows more, once I’d sorted the wigs, I found losing my eyelashes and eyebrows more distressing, because you couldn’t do anything about that and it made such a difference to the way my face looked. And I didn’t like looking ill because people treat you differently when you look ill even if you feel fine, and I didn’t want that, I wanted to just really be able to get on and not be treated too differently.

Was the wig terribly expensive, or the whole appointment?

The appointment was free. The wig, in the end I bought three wigs because they have a relatively short life span. So I needed wigs for a period of about eight months, and one wig lasts, if you’re wearing it every day, lasts probably three months. So I had three in the end and they were about £150 each. So they were quite expensive. They were just, they weren’t real hair. I mean you can buy real hair wigs for £1000 or something. These were nylon I imagine. I do recall they told me not to put my head too close to the oven when I opened it because the whole thing would melt up. So I actually had three very different wigs and did have fun with it in the way that she had suggested I did. And I really enjoyed that, but they, yeah they were expensive. And again, I was lucky in that I was able to afford to do that. I think some care could be paid, more care could be paid to NHS provision really, certainly from my experience.

Because you go through a series of tests and so on, the diagnosis kind of drips out, almost. The first time I was sat down and told that there was something seriously wrong it was my GP that told me after she got my chest X-ray results back. And it’s interesting because looking back on it when I had my chest X-ray in the hospital I was waiting, there were other people in the waiting room, and they took you in, did the chest X-ray and then asked you to wait still in your gown while they process it to check that everything, that the film is good enough or whatever. So I was in the waiting room in my gown and there were other people still waiting in their gowns to be told they could get dressed. And the X-ray guy would come out and say, ‘Ok that’s fine. It’s taken. You’ll need to go back to your GP in a week or so to get the results. And he said that to three people.

And he came out and said to me, ‘OK your X-ray results fine. You’ll need to talk to your GP in the next day or so. And I thought, ‘He told everybody else that it will be a week. How come mines going to be coming back so quickly?’ I didn’t think, ‘That’s because you’re really ill. I just thought, ‘That’s a bit peculiar. And I went home and had a phone call from the doctor, from my GP that day at six, it was about six oclock. And I was already booked in to see her a couple of days later. And she said, her receptionist rang and said, ‘Would you mind coming up to the’, you know, ‘Would you like an earlier appointment?’ And I said, ‘Well when?’ And she said, ‘Well this evening. And I said, ‘Well no I’ve got my baby here and I can’t really do it this evening. And the doctor came to the phone and said, ‘It’s fine for you to bring your daughter with you. I really would like to talk to you this evening.

So that was obviously quite unsettling and made me think, ‘OK well maybe were dealing with something a bit serious here. And I went up to the GP’s and she sat me down and talked about it. And to be honest I don’t really remember the words that she used or exactly how she told me. I know that she showed me the very good survival rates and I know she took a great deal of time with me. And I think I got quite upset and I can remember my daughter climbing on my knee to cuddle me because I was upset but I don’t really remember much more than that, which I suppose must mean that it was relatively good. I mean, and then, and she was saying, ‘Well this needs to be confirmed with a biopsy but from the feel of the lumps and from what the X-ray looks like we really do think this is Hodgkin’s. And she was very good. And then of course each time it was confirmed a bit more than it was. I was told again that it was and I think I was always managed really quite well.