And for example when my hair started falling out, and of course I was twenty and I wasn’t that, I’d never been that bothered about, I’d never been that worried about how I looked, I always thought, ‘Well I look fine, you know, quite a lot there, so I rang up my friend and I was, these three boys, and I said, ‘It’s… He said, ‘Right’, and this one particular friend who I’m still very close to, said, ‘Right I’m coming round, I’m coming round this afternoon. And he came round with this, with these other two and they said, ‘Right,’ and they brought with them a video camera and clippers, and we all shaved our hair off, and they videoed it and it was a joke. And it was, it was so funny and it was so good, and it was like, nothing’s different.

And I mean I was really pleased to, I have that, you know, and it was, and then they did it and they even did it like they shaved off the top bit first so we looked like monks, you know, I mean it was ridiculous. And if you think about it you think, ‘God that’s a bit distasteful’, but it wasn’t at all because I just thought, ‘This is great. And because my hair, and then I never had this half thin half thick thing because I did that quite early on once it started to fall out, I never had that thing where it’s kind of like I’m disintegrating, because that’s what it feels like, it feels like you’re falling apart, and I thought, ‘I’m not going to let myself feel like I’m falling apart. So we did that and then it kind of thinned out, but what would happen is my main friend, he would come round and sort of shave off the bits that were growing so that it didn’t look too manky.

And I would wear hats sometimes but I would mainly just go out bald, and if people said, ‘Oh what’s wrong with you?’ I’d say, ‘I’ve got cancer. And that would shut them up, and I’d be like, ‘I don’t care, you know, if you want to go and be so ridiculous. And so the hair thing to me I was lucky because it didn’t worry me. I think the stage I was at I didn’t care, I was twenty, it’s the sort of thing that people do when they’re twenty, and the sort of people I knew would’ve, you know, weren’t that bothered. But I was also lucky that I had friends like that who would do that with me really. And I did wear a scarf sometimes in the summer so I wouldn’t get burnt and stuff, and I got lots of hats, people gave me lots of hats, and that was all quite funny. So that was, I mean that’s an example of that kind of positive side of it.

And of course you go to the, somebody knocks at the front door and you forget you’ve got a bald head and you sort of don’t want to frighten them. I was in my ward one day and because I was poorly I had to have the commode come to me so I wasn’t capable of getting to the, even to the toilet that was in my own room. And of course I hadn’t got a light on, the light was on in the corridor but I hadn’t got the light on in my ward. And this poor nurse she opened the curtains to see if I was all right and I must’ve looked like a ghost because I had no hair and it was dark and this vision was just, I frightened her to death, absolutely frightened her to death. ‘Oh’, she said, ‘I thought, I really did, I think’, you know. But I was quite hurt really at the time, I thought, ‘Oh gosh do I look that bad?’ I saw the funny side of it the next day, and every time I saw her after that I said, ‘Oh I promise not to frighten you next time. But it was quite embarrassing to me at that stage because I thought, ‘Oh gosh I really don’t look like that do I?’

I was very self-conscious about it at that particular stage and not feeling very well at the time of course it just hit me quite badly. And so every time I’ve gone anywhere now I’ve tried to put my hat on or make sure that people didn’t see it. And now it’s there I can actually see the little bit I don’t feel quite so self conscious. But it’s just one of those things you’ve got to accept is part of the problem, and again that will go away and get better, and as soon as things do start to look more like normal you feel better in yourself and quite cheerful and laugh about these things in the end.

And I forgot to ask you earlier about the hair loss, you lost your hair, that would have been with the CHOP, would it originally?

Yes.

How did you deal with that?

Originally it was the main thing that I thought about because I hadn’t had my hair cut for just over 18 years, and to think, ‘Christ, I was going to go bald’, that was a bit freaky. I mean when I lost the beard and the hair everybody said, ‘My God, you look a lot younger. And the amount of folk that said, ‘It’s strange because some people when they go bald they’ve got a funny shaped head. Well apparently I’ve got quite a nice shaped head so I was OK about it. I didn’t like people saying to me, ‘My God, you look a lot younger with short hair and clean shaven. But the biggest problem is when your eyelashes go, is the dust you get in your eyes is incredible. But you don’t actually look, you can look in the mirror and you still basically you’re looking at yourself until your eyebrows disappear, then you’re looking at Bob Geldof in the wall and it’s just strange.

But no it bothered me up to a point where it didn’t, which was once I’d lost it all. I mean I used to crack jokes with the local laird. He used to say to me, ‘It’s quite warm today isn’t it?’ And I said, ‘Quite right,’ take my hat off and pull two handfuls of hair out and put my hat back on. But I don’t know, I think along with everything else it was going to grow back so keeping a sense of humour about it, you know, you just had to do something.

But somebody, and I’m trying to remember who it was, somebody gave me a bottle of this stuff, and it’s a mould. I gave it to someone in the haematology unit to check it out to see if it was OK. And they said, ‘Yeah it’s OK, it won’t do anything but it’s OK. So I was drinking this stuff, I mean you shake it up, break the mould up through it and drink it. And it was growing hair during the chemotherapies and you thought, ‘God this is brilliant. But when the hair got to about this length you could go and just pull it out. And I mean I’ve often cracked jokes about ‘puberty is a piece of cake, I’ve been through it three times. But when I was in the big hospital, to wind one of the nurses up I had a little bit of a moustache before I went in, and you could actually sit and just pull it out, so you pluck it down to Hitler size and then goose step up the ward and it just wound the nurses up, it was good fun. So I mean you can do lots of things. I mean I’m a firm believer you can either get on with it or sit down and squeal about it.

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.

Over the months I’ve felt very embarrassed about my hair, being bald, you know, as such. I have a wig, they gave, I get a wig on the national health and I’ve worn it at occasions where I felt I ought to wear it, you know, where people didn’t know about my problem. But I did, I felt I didn’t like wearing it really, it itched and I felt it kept coming up, going up, I was going to lose it. My daughter took, shes got an open-top car and she took me out one day and I put this wig on and we drove along the ring road and the wind was blowing and I just felt suddenly that my wig was going to blow off and land in somebody elses car, you know, so I had to keep, keep hold of it. So I put a scarf on on the return journey.

And I’ve had to buy that many hats because last summer when the sun was very hot I had to protect my skin from sun. Not that I sat out all that often but, you know, wear a sun hat. So I bought dozens of sun hats so that I could go out with them and go back to hospital and everything with it. And then of course winter came and it got very cold and the bit that you feel most cold is your head, you know, they always say that if your head is warm your body is warm, don’t they? Of course having no hair I was really quite cold so I’ve got umpteen little woolly hats as well now. But sometimes I put them on and think that I look like a builder’s mate, you know, it’s really quite embarrassing sometimes.

I was going to ask what happened to your hair, did you lose your hair?

Yeah that was the other kind of – what are they called? – side effects, that’s the word. That’s the other kind of side effect I suffered. I mean I don’t have particularly much hair now, still, but yeah, it did all fall out and it didn’t really affect’ As soon as I found out I basically just shaved my head and just got on with it and thought, ‘Well, might as well get it over and done with. I’m going to lose it at some point. So I just basically just did it straight away and hopefully that would, that would be it over and done with. I didn’t really feel any kind of, no real problems with that, what I did find strange was losing hair from other parts of the body, particularly in sensitive areas.

At the time I was single, when I first got diagnosed, but I actually met my current girlfriend during my chemotherapy and I found again, that was a bit of a stumbling block for me. A bit of an issue, yet I felt different from everybody, I didn’t want to, you know. I mean there was literally just no hair on my body, full stop, and it kind of felt very strange to be entering into a relationship and entering a sexual relationship as well, with such a different body to the norm basically. I wouldn’t say deformed because it wasn’t, it’s not a deformity it’s just something different, and I didn’t ever approach it like that, I just kind of felt I had to take things a little bit slower and I was quite honest about that sort of thing because I was lucky with the particular person that I was with that I could raise those kind of issues.

Oh and the other thing I didn’t like about ESHAP was that my PICC line had gone and I’d had to have a central line put in. And strangely I didn’t find hair loss an issue, I found the central line was my big body image issue, I hated having a tube hanging out of my boob and I never got used to it. I was just, I was almost, and I think the worst thing for me was sort of I felt very vulnerable because it was so exposed and it was sort of long and dangly and I had to, I mean I’m a flat-chested woman, I had to start wearing bras for the first time in my life just to hold this tube in, which the bra saleswoman at Marks and Sparks didn’t like that because she said, ‘Oh no we don’t like fitting you for bras when you’re already being treated,’ sort of thing. I think [they’re] mostly used to women with breast cancer. And I was going, ‘Well I am being treated and I need the bra now please because what do you want me to do, walk around in agony for the next however long it is with no support for this tube?’

So I sort of found that really difficult to deal with. As somebody who sort of thought she was being the caring person because she understood breast cancer but didn’t really understand the issues of central lines and the fact that, yes, so I think I had to say it was totally my own responsibility that I was going in to a changing room to try on a bra. And I guess when you’re trying to do the normal things through treatment and you’re kind of knocked back every now and then, and that kind of upset me.

And then I had chemotherapy through a drip in my hand, my arms and neck. I ended up having so much to my hands that it burnt the veins in the arteries or wherever, and then I had purple and brown scarring all the way up my arms, both of my arms. This ones still there, it’s like, still kind of grey and it doesn’t come up if I do something like exercise or whatever. My nerves come up in this hand, but this hand they’re still kind of knocked out still, so they were all bruised up and that.

And you said that your Hickman Line got infected?

Yeah. During my treatment, because it’s like a fresh wound, it’s right there, it’s always there, and the pipe goes, moves around, because it goes in and out and stuff, and it’s pulling it slightly, the skin that goes around it, and pulling it slightly would end up ripping the skin. And I’ve got a massive scar there from the pipe being there, which was a small cut on my chest, but it got cut three times, got pulled and this and that, that it kind of got messed up. When I was sleeping it happened worst, because you end up tossing over and whatever, and your arm goes over it, and you squash it or something, and I got my stitches ripped and everything there, so I had antibiotic for that, during my treatment and slowed down my treatment a bit, because you can’t have antibiotics and chemo at the same time, so I had to have, I had to wait for a couple of weeks to recover from this, then have my treatment. It wasn’t, it did really hurt, but wasn’t really bad.