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Body image after a stem cell transplant - patients' perspectives

 

Treatment for blood cancer, such as a stem cell transplant, can cause a number of different side effects which may physically change the patient's body in many ways. These can include changes in physical appearance (such as hair loss or changes to the skin) and changes to the body's function (such as fertility or mobility).

All of these changes can have a negative impact on the affected person's body image.  

Billie in the Anthony Nolan Patient Services team spoke to four patients about their experiences of body image changes during transplant, exploring what affected them and how they coped.

 

Louise's story

Louise had her stem cell transplant in 2014 to treat her acute myeloid leukaemia (AML).

'I saw a clinical psychologist, and body image was something we talked about, which was helpful.'

 

How did your body change as a result of your stem cell transplant and treatment?

Hair loss is part and parcel with chemotherapy for most people, as is having a Hickman line inserted. I also had to have chest drains as part of my treatment and although I can’t see the scars as they’re on my back, I know they are there!

My ongoing chest problems affect my body and the way I see myself too. Because I get short of breath, I feel that I can’t exercise as much as I’d like to. I’m heavier than I probably should be.

 

Do you think you were prepared for these changes?

I think my job really helped to prepare me, as my background is in critical care nursing. I had an awareness of what a Hickman line was and what it entailed; although I must admit, I never thought I’d be there receiving one as a patient.

With the hair loss, and lines, and goodness knows what else, it did affect my perception of my body – but also my perception of self. There is definitely a big psychological impact that goes along with these physical changes you experience.

 

Can you tell me about some of the emotions you experienced in relation to your body image?

I felt massively out of control in this, and in all aspects of my treatment and care. I had to go on the best advice of the clinicians; I didn’t have any choice but a stem cell transplant. I was kept informed, and the team were great, but there weren’t any other options. I felt frightened and self-conscious. Also very vulnerable.

 

Was there a particular time in your treatment were your body image affected you most?

Yes, I felt very self-conscious after the 100-day mark, when I started to get out a bit more. I felt that people were looking at me. Particularly the first time wearing my wig in public but also being out without it. I’d start wondering what people thought of me.

Silly things bothered me, like getting my hair back to normal, and even now, three years down the line, I’m not very fond of my hair. But I just have to put things into perspective really. I’m here to see my kids grow up, and that’s what matters most.

 

Did you talk to anyone for support?

Yes. I saw a clinical psychologist, and body image was something we talked about, which was helpful. My husband helped me access psychological services close to home.

 

Did your changing perceptive of your body image affect your relationships?

I think they still do. I’m not the person I was in lots of ways. I keep my distance a bit, as I want to protect myself.

 

Do you have any tips on managing or coping with body image concerns?

I think people have to do what’s right for them, but I’d say having good communication with your clinicians about the ways in which your body will change can be helpful. Let your team know if there are things concerning you.

Also, asking about things which can help, but might not be offered ordinarily. People don’t talk so much about how the treatment affects your skin and nails, too – it’s important to ask if there is a cream that can improve things, for example.

 

John's story

John had two stem cell transplants in 2009 to treat his Richter’s Syndrome leukaemia.

 

'Try to not get hung up on what your body image is like during treatment. When you are better it’s something you can work on.'

 

How did your body change as a result of your stem cell transplant and treatment?

One thing that the stem cell transplant and treatment brings is a risk of secondary cancers, and I have skin cancer which affects my body image. So far surgery is keeping on top of that. I’m quite surprised when I chat to people about that, they just presume you have a mole removed. If only it was that simple!

I also had dramatic weight loss. I’ve been a keep-fit fanatic all my life; I’m 6ft 2, and I used to be 15 stone of pure muscle. That all that went in the two years of being unwell. I looked more like a Lowry painting! Very gaunt, obviously no hair, and extremely thin.

 

Do you think you were prepared for these changes?

To be honest, it wasn’t an issue I focused on at all. I was concentrating on all the chemotherapy and getting through two bone marrow transplants! That was my focus.  Although it didn’t affect me, I found how I looked did affect other people.

 

Can you tell me more about that?

Well as I mentioned, I had loss of hair, massive weight loss, and I looked quite frail. Friends and family just don’t know what to say to you when they see that; you look so different to what they’ve known.

But you are still you. I found that how others saw me was often the complete opposite of how I saw myself, despite my body changes, so that was interesting.

 

You mentioned you were a keep-fit fanatic prior to your transplant – was it important to you to try and get back to your previous body?

I’m nowhere near the physique I was before. As a result of all the treatment, my bone density is poor and so I’m really limited to what weight I can achieve. I’m 12 stone, and toned, and I’m comfortable with that. After all I’ve been through that’s pretty good going!

Before I was poorly I could do 50 press ups and when I started getting back into training I could only manage 1. It took me three years to get to where I am now in terms of fitness.

Five years prior to me being ill I was British Champion for the 2100 metres rowing – so it was hard to see my muscles fade away and be able to do so little. But I’ve worked on it as part of my recovery. It helped me focus.

 

Do you have any tips on managing or coping with body image concerns?

Try to not get hung up on what your body image is like during treatment.

When you are better it’s something you can work on; the important thing is to focus on is your treatment and getting through that. It’s such a lot to deal with and you need to give it your full focus.

The characteristic that got me through all of this, body image concerns included, was not to focus on what I cannot do or don’t have, but to focus on what I can do.

 

Rob's story

Rob had his transplant in 2014 to treat acute myeloid leukaemia (AML).

 

In what ways did your body change as a result of your stem cell transplant and treatment?

I went through three stages of major body changes.

Treatment-wise, there’s the normal stuff of hair loss and getting pale because of radiotherapy and chemotherapy. So not looking healthy is the first change. You begin looking like a ‘cancer patient’.

Through the transplant and in the three months post-transplant, I experienced a massive amount of weight loss. I went from 90 kilos to just under 60, so I lost a third of my body weight rapidly. My mum said I looked skeletal; it was just such a huge change to how I was before.

Prior to being unwell I was in shape, looked after my body, and over a short space of time I looked like a different person.

Post-transplant, when I started to get my appetite back and eat again, I put on a lot of weight fast! I was overcompensating for my previous weight loss and I ballooned up. I was a bit overweight.

 

Do you think you were prepared for these changes?

I was definitely prepared – as in, I was given all the information by my transplant team – but I don’t think I really prepared myself for the impact of it.

I just thought, ‘I’ll be fine, I’ll just get on with it.’

When I had my initial chemotherapy. I was told I’d lose weight and actually, nothing really happened and I felt fine. So when I was given the same info again about potential weight loss during transplant, I thought I’ve heard that before, I’ll be OK.

 

Can you tell me about some of the emotions you experienced?

Not recognising myself in the mirror after losing all that weight was devastating. I spent a good part of a month being bed-bound, not really seeing my own image. So being scared was an emotion I felt when I finally did.

That really affected me psychologically. But when I did put weight back on and fill out my clothes, and I started to look more like myself – that was a great feeling. I felt like I was progressing, and positive, like I was getting there.

                                              

Did it make you feel self-conscious?

Personally? It didn’t, really. I was so stuck in the mindset of wanting to get better that I wasn’t worried what other people thought. I would have just been happy to feel better.

 

How did it affect your relationships?  

When I first left the hospital because of my weight loss and depression, I wasn’t exactly myself. My girlfriend decided not to see me for a couple of weeks as she didn’t recognise me and needed some time to adjust. That had quite a big impact, but I understood. My mum hated seeing the physical weakness in me.

I think it was particularly hard as I’d looked good through the treatment that she didn’t expect me to look worse after the transplant, when I was supposed to be on the mend.

 

Do you have any tips on managing or coping with body image concerns people might have?

I think just, ‘Don’t let it get to you.’ It’s something you can often change. But at the time of treatment and transplant you’ve got to focus on staying alive, on being alive. Try and just enjoy life as you have it – in that moment.

If you let it consume you, it’s just another weight on your back.

 

Jayne's story

Jayne had her transplant in 2012 to treat acute myeloid leukaemia (AML).

 

'During recovery, try and be kind to yourself.'

 

In what ways did your body change as a result of your stem cell transplant and treatment?

Shapewise, I got bigger. Which was a massive surprise! I actually thought I’d lose weight.

The biggest thing for me was my muscles and the strength of my body, which still make up part of how I view myself. In hospital, my muscles had switched off, and when I eventually went back to walking, any significant distance my hips hurt me and my body looked different.

 

Do you think you were prepared for the changes?

You do have that bit of worry about losing your hair, and what you are going to look like. It’s a daunting thing.

I remember a lady at work said something that has really stuck with me. ‘How are you going to feel when you lose your hair? It’s such a big part of who you are.’

It really upset me; it made me stop and think about how much people could judge me about how I look. My hair says nothing about who I am inside! For me it’s about personality and character. That’s the measure of a person. Not, ‘Ooh, I’m going to like you, because you’ve got nice hair!’

But that is often the world we live in, especially for women. I’m 47 and I can’t imagine the pressure for a younger woman with cancer, losing her hair when society and social media are constantly telling us looks are what matter most.

I speak in schools as part of my job, and I try and let children know that we shouldn’t judge people on looks, but by how kind they are and how much love and compassion they have for others.

 

Can you tell me a bit about some of the emotions your body image changes made you feel?

When my hair started coming out in clumps, I really didn’t like it. I wanted to take control of the situation as much as I could, so I asked the lead nurse if we could shave my head.

This experience wasn’t as traumatic as people might expect. I actually felt so much warmth for the nurse; she was so gentle and lovely, and when I saw myself in the mirror for the first time, it didn’t matter that I didn’t have any hair.

The chemo was working, and I thought, ‘Let’s do this’.

I didn’t like my wig, though. It made me look like Ruby Wax! I don’t dislike Ruby Wax, but I didn’t want to look like her. I think I wore it once, the first time the kids came into see me when I had no hair, as I didn’t want to shock them. I bought lots of different hats to match my outfits instead.

 

Did the changes to your body image make you feel self conscious?  

I think the weight gain must have made me more self-conscious, as I’ve always wanted to be slim and watched what I’ve eaten.

I didn’t like being big, but I was more interested in the fuel I was giving my body in order to get stronger. I wasn’t calorie-counting.

 

Did you talk to anyone about your concerns regarding your body?

No – but do you know what? I never really spoke to anyone about anything.

I don’t think I realised that I could get help. That was five years ago, having my stem cell transplant. I think Anthony Nolan particularly have come such a long way in patient support, but back then I didn’t have any communication with them.

 

Do you have any tips on managing or coping with body image concerns?

I would try and encourage others to see something like hair loss as part of the process. It’s an indication that the chemo is working, which is another step towards getting better.

I’d also advise that focusing on being nutritionally well is more important that whether you are too thin or over weight during treatment. Over time, if you are concerned or upset about your body image, you can do something about it.

During recovery, try to be kind to yourself. Treat yourself gently, with lots of love and care.

 

Got questions? Head to our Patients & Families Forum to find out more.

 

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