Lymphoma
Hairloss and body image
Many people expect and fear hair loss from chemotherapy. One woman said that it was the first question she asked her consultant. Not all chemotherapies cause hair loss but many people do lose hair from their head, face and body. Some people's hair just thins while others lose it all. Several people said the process of losing hair was worse than having lost it. For people who considered their hair an important part of their image its loss was deeply upsetting, although one woman also said it was interesting and strangely liberating.
Was upset to find her hair on the pillow on waking; felt that losing her hair made her look blank...
Was upset to find her hair on the pillow on waking; felt that losing her hair made her look blank...
I think the worst part about it were when I were asleep and I woke up and my head was tingling and I'd got up and there were just hair on [the] pillow. And that made me feel a bit sick because I just thought, 'Oh it's happening', and it just happened, within a week of me having my first session of chemo, it just started coming out. And it were a bit upsetting were that because I mean to lose all your hair like that. I mean I hadn't had long hair but I just, it were, how can I explain it? It takes a big part of you away does your hair, you don't realise until you've got no hair just how precious it is to you really. Because it's your character is your hair, without it you're just a blank piece of paper, you're just, and you do, you look so blank with no hair.
Men and women sometimes chose to cut their hair short before treatment so it would be less traumatic for them (or their children) when it fell out. Wisps of hair often remained so people commonly shaved their heads. One man said his wife liked his shaven look. Friends or partners sometimes supportively offered to shave their head at the same time - a woman said this had been a bonding experience with her husband who had felt anguished that he could do nothing to help her. One man wished he had shaved his beard off in advance as bits dropped into his food. Some women were offered a 'cold cap' to try to prevent hair loss.
Her three male friends shaved their heads with her and made a video of the process. She feels...
Her three male friends shaved their heads with her and made a video of the process. She feels...
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.
Her hair came out sooner than expected; she tried using a 'cold cap' to reduce hair loss but it...
Her hair came out sooner than expected; she tried using a 'cold cap' to reduce hair loss but it...
With my hair they, it was too late but they thought they could slow down the process. They did like a cold cap. But they said it was too late pretty much because my hair is quite thick and it grows quickly and they said the quicker your hair grows the quicker it comes out. So it started coming out about six weeks before they predicted. They thought it would be quite a way into the treatment and they weren't sure if it was going to come out at all. So'
Can you describe what the cold, using the cold cap is like?
It was, it looked like a, from what I can remember, as I say I only had it once, but it was like a shower cap, a swimming cap, and it was just freezing cold on your head. And that was, they said it was because the chemo makes your hair follicles expand and this, because it's so cold it shrinks them, which is why it stops some of the hair coming out. But that's'
It didn't work for you?
No, and losing your hair is probably one of the most traumatic things, like waking every morning and just your pillow being covered in hair and, yeah, it's not nice.
Several people felt self-conscious and embarrassed about their baldness and were aware of people looking at them. Some considered hair loss a visible sign of the illness, although one man pointed out that it is an effect of treatment. A woman who had lost no hair said this meant she hadn't had to tell people about her illness. Some people had worried about how friends and colleagues would react to their changed appearance when returning to work or school. Women often realised that their bald appearance could shock people who weren't expecting it. Some people dealt with hair loss by making fun of it. A young man enjoyed wearing flamboyant wigs that his children bought him from a joke shop.
Felt self-conscious about her baldness and was embarrassed and upset to have frightened a nurse...
Felt self-conscious about her baldness and was embarrassed and upset to have frightened a nurse...
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.
Had long hair and a beard before his chemotherapy - used humour to cope with the hair loss.
Had long hair and a beard before his chemotherapy - used humour to cope with the hair loss.
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.
Most men who lost hair went bare-headed but sometimes wore a hat in the cold or in the sun. Some women went bare-headed at home but most wore hats, scarves or wigs outdoors. Wigs were available through the NHS but outpatients had to contribute to the cost, which put some people off. One woman had been horrified after going into hospital with a full head of hair to be faced with samples and catalogues of wigs. Some women bought wigs privately; some chose several in different styles or colours. Wigs can be styled to suit the person and can look natural and stylish. Some people liked their wigs, others wore them only occasionally because they found them hot or uncomfortable, were afraid they would come off, or felt it 'wasn't them'.
Trying to choose a wig from an NHS catalogue was 'miserable' but she got on well at a wig maker's...
Trying to choose a wig from an NHS catalogue was 'miserable' but she got on well at a wig maker's...
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 we're 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.
A wig from the NHS itched and she feared it might come off so she wore it only when she felt she...
A wig from the NHS itched and she feared it might come off so she wore it only when she felt she...
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.
Lost all her hair, bought an NHS wig but it was too hot, so wore scarves when out; her hair grew...
Lost all her hair, bought an NHS wig but it was too hot, so wore scarves when out; her hair grew...
CHOP.
Aha, and that's when you lost your hair?
Yes.
You didn't enjoy that very much?
No.
How did you feel about losing your hair?
That was worse I think than the illness.
Did it all fall out, every last bit?
Yes I was completely bald' no eyebrows, no hair, like this [laughs].
Yes, and I hope they warned you that was going to happen?
Yes.
Yes, good. Did they offer you a wig?
Yes I bought one but I didn't wear it, it was too hot. It was the summer months and I wore it once and it gave me a headache so I didn't use it.
So that's one you bought, you didn't get it from the hospital?
You get it cheaper I think. It cost about sixty pounds for me and maybe the actual price was a hundred pounds or something like that.
Did it kind of make you feel less of a woman having no hair, or how did it make you feel emotionally?
I didn't feel that [laughs], I felt bad, quite bad. And I was, the time couldn't pass quick enough to have my hair back.
Mm. Did you cover your head with scarves or anything?
Yes I did yeah [laughs].
Did you ever go around bald?
No.
At home even?
At home sometimes when nobody was there but otherwise I'll always have something.
Mm. So then it grew back, presumably after not too long?
Mm.
Did it grow back the same?
No it came out all white.
Did it, completely?
Yes.
Oh my God.
Yes I had a few, quite a lot of white hair, but then it was all white, now I put some henna'
Men suspected that hair loss was worse for women, yet several had found it upsetting. A young man had thought about getting a wig but then decided his baldness was an important part of his identity and saw no point in hiding it.
Chemotherapy can affect all body hair and for some people the loss of eyelashes and eyebrows made the face blank and unrecognisable. One woman was more distressed about losing her lashes and brows than the hair on her head because she couldn't hide it. Eyelashes serve a purpose - people found they got more dust in their eyes when their lashes had gone. Some men said that not having to shave their chins for several months was one small bonus - a couple of women said the same about shaving their legs.
One young woman kept her hair throughout treatment but lost a lot of it afterwards when she got shingles and scabs on her head and neck became infected. She needed skin grafts and still has some bald patches. She wore a wig and felt unable to live a normal teenage life, certainly not considering herself 'girlfriend material'. Another teenager who considered herself slightly overweight said she now felt 'fat, bald and ugly' so wouldn't consider having a relationship at that time. However, one young man did start a new relationship during chemotherapy. For more about relationships see 'Roles, relationships and sexuality'.
Lost all his body hair and was relieved that his new girlfriend was understanding.
Lost all his body hair and was relieved that his new girlfriend was understanding.
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.
On regrowth, hair was sometimes curlier or a different colour. Some men suspected they had not regained the amount of hair they had before because of a family history of baldness. A man whose hair never grew back thought he might have started a fashion for bald or shaven heads. Although hair loss upset some people it was usually temporary and seen as a small price for successful treatment.
Some people were affected by changes in their appearance other than hair loss, such as central lines, scars and weight changes. Having a central line in the chest for chemotherapy for several months (see 'Chemotherapy') made some women feel de-feminised and unattractive. People sometimes surprised themselves with what they could tolerate - a woman who thought she would have been squeamish about looking after her central line said she just got used to it and it 'became a part of me for 8 months'.
Many people had small scars on the neck from having lumps biopsied but these were so tiny that they weren't considered a problem. An elderly man who had one of a pair of dewlaps (loose folds of skin on the throat) removed with his neck lump wished they had taken the other one too. A woman who had her spleen removed had a large scar across her abdomen from the operation; she wasn't worried about it as it was rarely on view, but she could feel a gap where her enlarged spleen had been.
Hated having a central line hanging out of her 'boob' and had difficulties finding a bra to...
Hated having a central line hanging out of her 'boob' and had difficulties finding a bra to...
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.
Had a large scar where the skin had torn around where his central line had been inserted, and...
Had a large scar where the skin had torn around where his central line had been inserted, and...
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.
People who had taken steroids as part of their chemotherapy had developed a characteristic 'moon' face. One woman said she looked 'absolutely dreadful' having a swollen face, no eyebrows, thin eyelashes and very short hair. By contrast, one young woman who vomited a lot as a result of her chemotherapy lost weight and didn't mind briefly resembling a supermodel when she returned to university after treatment.
Looked in a mirror for the first time in his five week stay in hospital; at first he didn't...
Looked in a mirror for the first time in his five week stay in hospital; at first he didn't...
And I'd wear pyjamas and of course the pyjamas would have something like tubes coming out and I'd be all sort of, I had oedema as well around my legs, which made me look really fat in sort of strange places, and I'd got this awful face. And then my face had drooped so much it did look like a stroke, my face had drooped, my eyes sort of bulged out, my left eye bulged out, I couldn't control the left side of my face so it was sort of drooping and I was sort of dribbling and my eye was all red and inflamed and I'd sort of become fat in the face. And I looked at myself and I think that I, nobody noticed but I remember at that moment, you know, 'My God, look at me, I'm not'' I'd changed, I'd changed both physically and mentally, completely, I'd changed.
It was like that was one of my defining moments. I think that the time on February the 24th, it was 7.20 at night, that was like my defining moment that, that was the bit when everything that went on before would be defined as everything that went on before, and after that would be the moment when it, I would say it, everything started or everything finished because that had changed, and that was one of those moments when I realised that everything had changed, I looked different and I was different.
I remember just stumbling towards the mirror, and as I sort of got closer I realised that I didn't like the way, I didn't like walking through it, I wanted to avoid it because I looked so awful, I really did look terrible. And I remember almost being quite upset about how awful I looked, it was really bad because I just, I don't know, I was very upset about it because I'd changed, I'd changed so much from what I used to be to what I was back then. And I didn't want to change really because I thought, 'Oh I could just fight off the illness and then everything would be back to normal', and it wasn't, nothing was, it was going to, everything was going to be changed from now on, so I wasn't sure what was going to happen.
A woman in her twenties said that even though during treatment she had felt as if she had lost everything that made her feel like a woman - her hair, her body weight, her periods - two years after diagnosis she felt 'absolutely fine. I feel healthy, I feel normal'. For more about sexuality see 'Roles, relationships and sexuality'.
Last reviewed February 2016.
