Talking with your children about breast cancer

Transcription

Talking with your children about breast cancer
Talking with your children
about breast cancer
Talking with your children about breast cancer | 05
Introduction
Around a third of those diagnosed with breast cancer
in the UK each year have young children living at home.
So when there is a diagnosis of breast cancer in the
family many parents and carers find themselves asking
the question ‘what are we going to tell the children?’
We know that children are less anxious if they know what’s
happening, and that it can be less frightening for them to know
what is going on, even if they don’t fully understand. So, even
though you may find it difficult, in most cases talking with your
children about your breast cancer will help you both.
In this booklet we explain what children can understand at
different ages about a serious illness like cancer and how they
may respond to the news that you have breast cancer. It doesn’t
tell you exactly what to say to your child or children (we use
children throughout the text) because every family is different.
But it will give you some ideas about how to tell them and what
other parents’ experiences have been.
This booklet covers talking with your children when you have
been diagnosed with primary breast cancer. If you have
secondary breast cancer some of the information will be useful,
but there are other resources available to help with the different
issues secondary breast cancer may raise. You can find out more
about useful organisations and books in our booklet Secondary
breast cancer.
Although we mostly refer to ‘mothers’ throughout the text, the
booklet is also intended for fathers and may be helpful for any
adult who has reason to talk with children about breast cancer.
Call our Helpline on 0808 800 6000
Talking with your children about breast cancer | 07
Telling your children
Many mothers might want to put off telling their
children they have breast cancer or even avoid it
altogether because they are afraid of upsetting them
or afraid of getting upset in front of them. They may
also be worried about being asked difficult questions,
such as ‘are you going to die?’ But children usually know
when something is upsetting or worrying a parent. Even
if you try to hide it, it is likely to show in your face and
your voice, the way you talk to them and behave with
them, and the way that others treat you.
Children are very quick to pick up on secrets. If they feel left out
they may think they have done something to upset you or they
may make up their own story about what is happening, which
may be far worse than the truth. They may not tell you they are
worried, they may not know what’s going on inside themselves.
But the fear and uncertainty could have a damaging effect on
their behaviour, their schoolwork, and their friendships. They need
to be able to trust you, and being honest with them helps them to
do that. Keeping secrets may also be tiring for you, just at a time
when you need all your energy to help you concentrate on feeling
and getting better. There is also a risk that if you don’t tell them,
they will find out some other way and this may reinforce their
feelings that this is a really big issue.
‘Telling my daughters was the worst thing
I’ve ever had to do – and I’ve done it
twice. My first thought on being told I had
secondaries was “how are we going to tell
the girls?”. It was truly awful. But it had to
be done, as best we could, and they have
amazed me with their ability to deal with it.’
Eleanor (daughters aged 22, 20 and 14 at diagnosis)
Call our Helpline on 0808 800 6000
Talking with your children about breast cancer | 09
Who might tell them
For most children, information about your breast cancer will be
best coming from you and your partner if you have one. Children
seem to be able to handle difficult news best if it is given by
someone they love and trust. But if you’re finding it difficult, or
circumstances don’t allow, it might help to get someone else you
and your children know well to be with you.
‘I’m glad that Antony and I talked to them one by one to
ensure they had plenty of time to absorb the news and
start to ask their own questions.’
Eleanor
Call our Helpline on 0808 800 6000
10 | Telling your children
When to tell them
Most women talk to their partner, close friends or relatives about
the possibility of breast cancer when they first notice something
wrong or go and see their GP (local doctor) or breast specialist.
But they tend to wait until later to tell their children. Some tell them
after tests have confirmed they have breast cancer and a few may
wait until after surgery.
There are no set rules and a lot will depend on the age of the
children and how you usually talk with them about illness and
other issues in the family. But the longer you leave telling them
something, the more likely your children are to realise that all is
not well, and to start worrying and guessing what it might be.
Obviously, it’s an emotional time. Your children are likely to see
you upset from time to time over the coming weeks or months
and this allows them to feel the same way. However, if you can
be calm and confident when you tell them about your cancer,
even if you don’t feel it inside, it may help your children feel less
upset or panicky. It is best to keep talking with your children
regularly about what’s going on so they feel informed and are
able to ask any questions they may have.
‘Deborah was living in Russia so we had to tell her over
the phone. Naomi was at university and was due back
the following day. We told her on her return. We told Emily
when she came back from school. Antony told Deborah
on the phone, but I was beside him. We were together
when we told the other two, but we told them individually.’
Eleanor
‘I told my son just before going into
hospital. I was on my own with Rhodri –
who was aged four at the time.’
Catrin
Visit www.breastcancercare.org.uk
12 | Telling your children
Finding the right words
What you decide to tell your children will depend on a number
of different things. You may be a family that talks openly about
everything, or you may come from a background or culture
where intimate or serious things are not talked about, or are kept
between adults. You may talk more easily to one of your children
than to another. And your children’s ages and characters will
make a difference to what they understand and how they react.
Many people find it helpful to discuss what they plan to say with
their partner or a friend before talking with their children. Or you
may want to involve your breast care nurse in this discussion.
Practising the kind of wording you want to use beforehand also
helps. The best approach is to keep things simple and try to
avoid detailed, complicated explanations. See what questions
your children ask and if you don’t know the answer say so.
It’s important not to make things up, as children will usually
remember what you say even though you may not.
One of the most difficult things for many adults is using the word
cancer because it has so many negative associations. This is not
necessarily true for children, who may simply accept that it is the
name for what is wrong with you and may have overheard this
word used in the family or at school anyway.
If you can, it is best to use the word cancer from the beginning,
and to explain it in language that your children understand. For
example, the word cancer becomes less frightening for everyone
if it is described as cells that are different from normal and have
grown faster than other cells in the body.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 13
‘I told him that Mummy had a lump in her breast called
cancer and that she needed to go into hospital to get
the lump removed. I told him that I would only need to
be there for a couple of nights and that he could come
to see me while I was there.’
Catrin
‘I said: “We’ve got some bad news for you. The doctors
have found cancer in Mummy’s right breast. It is
spread throughout the whole breast so they are going
to have to do a mastectomy”.’
Eleanor
‘We used the word cancer with Natasha. It was not a
term that Alexis was familiar with so it would have been
meaningless to her to use the word cancer. More
recently, we have used the word cancer with Alexis
such as “cancer, that is the illness Perlita had”.’
Perlita
Call our Helpline on 0808 800 6000
14 | Telling your children
If you have more than one child, even if they are different ages it
may be a good idea to begin by telling them together so that they
start with the same information. They will understand and take
different things away and it’s likely that siblings will talk to one
another. It can be useful to encourage this so they are better able
to support one another.
Try to make sure your children get accurate information about
your breast cancer and treatment, otherwise they may go looking
for information themselves or imagine the worst case scenarios.
You should let them know that if they want to, they can come
back to you, or to their brothers or sisters, to ask more. You can
also make time to talk with them individually at a later date.
It’s important to talk about what’s going on in front of the children
and avoid whispered conversations. Although this may feel
difficult, talking and being as open as possible about the situation
may help you and your family at this time.
‘The key thing for me was that the girls knew that
I wasn’t hiding anything from them, and that what I
told them was the complete truth, as far as I knew it.
I encouraged them to ask any questions they might
have, and assured them that if I knew the answer
(and I might not know the answer) I would tell the
truth and not try to fob them off.’
Jenny
‘I was very glad that I used the word cancer whenever
we talked about what was happening. It has
normalised it for him and he is able to talk about it to
me and I don’t need to shy away from talking about
cancer in front of him. In fact, he is a very enthusiastic
supporter of Breast Cancer Care!’
Catrin
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 17
How children may react
Children react differently depending on their
age, temperament, stage of development and
the relationship they have with you. So it’s hard
to predict what will happen when you tell your
children about your breast cancer.
You may find yourself faced with some difficult questions.
Children may ask you about the future and who will look after
them, whether you will be cured or whether you are going to die.
It is important to be as honest and open as you can but it is fine
to say that you don’t know. Try to be realistic, yet hopeful, but
be careful not to make promises you are not sure you can keep.
Alternatively, they may respond by asking what is for tea or if they
can go and watch the television. Most of all, your children need to
know that everyone’s doing all they can to make you better, that
you still love and care for them, and that there are things they can
do to help.
Like adults, some children find it easier to express their emotions
than others. Try to give them time and opportunities to talk about
how they feel, but it’s best not to push them if they would rather
not talk, especially at first. Your children may prefer to talk things
over with their friends rather than with you, especially if they are
older. If this is the case, you may want to talk with friends’ parents
first, so that everyone is saying the same thing and your children
aren’t frightened by half-truths or wrong information.
Children may respond to the news in a similar way to adults.
They may not feel like eating, their sleep may be disturbed and
they may have trouble concentrating at school or with homework.
They may get angry or upset over what seem like relatively small
problems and setbacks. Younger children particularly may revert
to behaviour that they haven’t shown for a long time, such as
baby talk or bed-wetting. The important thing is to be sensitive
to changes in their behaviour or mood. These are to be expected
and are a normal response.
Call our Helpline on 0808 800 6000
18 | How children may react
Sudden unacceptable behaviour and poor school results may
be a sign that your child is feeling worried or insecure. You won’t
want your breast cancer to become an excuse for this, but you’ll
want your child to know that you understand that this is a difficult
time for them too. Many parents find that bending the rules a little
doesn’t hurt, but that it isn’t a good idea to ignore seriously poor
behaviour. Children are likely to be more anxious and upset if
the rules suddenly change. Clear limits and boundaries can help
them maintain a sense of normality and cope with their anxieties
a little better.
At times children may appear to be thoughtless and unkind, but
that’s because they have other things aside from the cancer on
their minds, such as school or friends, which is how it should be.
But they can also be very supportive, and will sometimes surprise
you by doing or saying something that shows they understand.
In some cases, children may have more serious or longer-term
problems as a result of a parent’s illness. If you are concerned
about how a young child is coping, it might be helpful to consider
that children can feel more comfortable opening up to others,
particularly if they feel they have to stay strong within the family.
Your GP, school nurse or specialist team may be able to point
you in the right direction to get some help from trained school
counsellors, or professionals with specific training in working
with children and their families.
You may find it useful to read our factsheet Breast cancer and
your child’s school which gives information about possible
ways that might help to communicate with a child’s school about
your diagnosis and treatment.
It may also be useful to look at the section ‘When to seek help’
if you feel you need further support.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 19
‘All of them asked detailed, age appropriate questions.
From the word go they were all very supportive of me
and each of them, according to their differing ages and
characters, found ways to help the family as a whole.’
Eleanor
‘Discuss with the children what they want their school
to know. One of my daughters specifically asked that
the teachers didn’t try to talk to her about it, but that
she would speak to them if she needed to.’
Jenny
Call our Helpline on 0808 800 6000
20 | How children may react
Under six
What you say to very young children about your breast cancer
will depend on the words you normally use for breasts and
feeling ill. You won’t want to frighten them or overload them with
information but you may decide to tell them that your breast – or
whatever word they use for it – is sick or sore and that you are
going to hospital to make it better. As well as talking, you may
want to show them what is happening on dolls or teddies or draw
pictures. Storybooks can also help to explain things and prompt
questions (see the list of books for children at the end of this
booklet). It is always a good idea to read through a book you want
to use first, before sharing it with your children, to make sure it fits
in with your circumstances.
You might like to share the book Mummy’s Lump with your
children. It’s a simple picture book aimed at the under sevens
and follows a family through the mum’s diagnosis and treatment
for breast cancer.
Most young children don’t like changes to their routine or may
worry about being separated from you. When you go into hospital
they need to know that you will be back soon, and that they won’t
be left alone or with someone they don’t know. They need to
know details about who will be giving them their meals, taking
them to nursery and putting them to bed. If you have to stay in
hospital for a few days, they can visit once you feel well enough.
It will be reassuring for them to see where you are and know that
you want to see them. It is a good idea to explain to them that you
both need to be extra careful when cuddling and that you may not
be able to pick them up for a while.
With very young children, one of the most important things is
to make it clear from the start that your illness is not their fault.
Young children sometimes blame themselves for what happens
to the adults in their lives and they may link your breast cancer to
something they’ve said or done, such as telling you that they hate
you in the middle of a tantrum. This can make them feel guilty, so
they need to be reassured, whether or not they tell you their fears.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 21
They may also think that your illness is catching, like chicken pox
or a cold, so you may need to explain that this is not the case.
If you do not have family and friends living close by who can help
with childcare, the social worker at the hospital or the Daycare
Trust (see ‘Useful addresses’ section) can give you advice about
childcare in your area.
‘My dad had recently died of prostate cancer (he died
in April 2003, and I was diagnosed in May 2003). Again
we didn’t shy away from the cancer word. However,
when I was driving Rhodri to nursery on the morning
that I was due to go into hospital, I asked him if he
would like to come and visit me in hospital later that
evening. He replied “but what if I’m too late?” We then
talked about me not dying that day.’
Catrin
Call our Helpline on 0808 800 6000
22 | How children may react
7–12 years
In this age group it can help to try to find out how much
children know about cancer so that you can correct any
misunderstandings, for example, that everyone who has cancer
will die. Even if you are reluctant to use the word cancer your
children or their friends will probably know the word anyway
from other people or from the television or the internet. They may
understand more about it than you realise, know that there are
different types of cancer and that people can recover from it. A
good place to start with children of this age may be to tell them
what has happened and what you and the doctors are going to
do about it.
Most children study the human body at primary school and will
have some basic ideas about cells and the different parts of the
body. You may want to look at some factual information with them
or read a suitable story. If you can, try to talk with them about
how you feel and encourage them to talk about their feelings too.
If you are going to have chemotherapy it is worth preparing your
children for the side effects you may experience such as nausea,
tiredness and the fact that you might lose your hair. Equally, you
should also explain to them that these symptoms will eventually
subside and your hair will grow back.
‘We told them Perlita was going to be taking some
medicine that may make her lose her hair. Alexis
would rush to the door each time Perlita came home
to see if she had lost her hair. She had no concept of
time and so was expecting her hair to be gone straight
away even before Perlita had started chemotherapy.
She was most disappointed that it was taking so long
to happen! When Perlita did lose her hair and had her
head shaved, there was a big smile on Alexis’s face.
She said that Perlita looked cool and had a nice
shaped head.’
Chris
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 23
Once you have a diagnosis, telling their teacher and possibly
the school nurse will help prepare them for answering questions
or giving your children extra support. Again, you may find our
factsheet Breast cancer and your child’s school helpful.
School age children are more aware of how your illness affects
them, and they may be very anxious or resentful. Routine is just
as important for them as for younger children. They want to know
that the detail of their daily lives will not change dramatically. Who
will take them to school? Who will care for them after school?
Who will cook their tea? They need to know that once you’re
feeling better you’ll be doing these things again.
Call our Helpline on 0808 800 6000
24 | How children may react
‘[My 12-year-old] was concerned that as I’m a single
parent they might be shipped off to relatives and lose
their own home lives. But I was able to reassure them
that, firstly, I wasn’t intending on popping my socks
before they had left home and built their own lives
so they were stuck with me for a good long while.
And, secondly, that if I was hit by a bus tomorrow
their older siblings, both adults, would step in and
keep their home together.’
Jenny
‘I visited Mary’s school and told her teacher so that she
would gain support there. This was very beneficial as
her teacher was able to understand when she was
upset and she felt confident enough to discuss her
feelings with him.’
Karen
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 25
Teenagers
Most teenagers will have heard of cancer and may know – or
think they know – something about it. They or their friends may
also know people who have died from cancer, so it’s useful to find
out how much they know about breast cancer. For example, do
they know that treatments used today can be very effective and
having breast cancer doesn’t automatically mean you are going
to die? Teenagers may want more detail about breast cancer and
your treatment but they may also prefer to find out about it on
their own. You may want to point them towards reliable sources of
information such as Breast Cancer Care’s booklets or website –
there are also other sources of support in the back of this booklet.
Some teenagers may appear unconcerned about the whole thing
and, like some adults, try to pretend it’s not happening. You might
find this hurtful, but they may cope by ignoring your breast cancer
and carrying on as if nothing has happened. Others may be more
emotional and some may be angry and appear resentful. It’s
important not to take this personally and allow them to express
themselves. Although they may not want to talk to anyone about
your cancer at first, you may want to brief someone else they
are close to, such as a grandparent or family friend, to listen and
answer questions if the need arises.
‘Glen struggled to come to terms with it and became
very withdrawn for quite a period of time. He admitted
later that he had found it very difficult as he was very
scared I would die.’
Karen
‘My 14-year-old found it a bit difficult, and wanted to do
something specific to show her support. When I found
out I would have to have chemotherapy and would lose
my long hair, she said she would also get her lovely long
hair cut short and would raise money doing so.’
Jenny
Call our Helpline on 0808 800 6000
26 | How children may react
Teenagers may be anxious that they will get breast cancer too,
particularly if they have heard that it can run in families. In fact,
more than 90 % of breast cancers are not related to family history
and you may want to reassure your children about this.
Boys going through puberty may find it embarrassing to
talk about breast cancer. They may be upset about what is
happening, but be unable to talk to you about it. It may be easier
for fathers to talk with their sons in this situation, or for another
male relative or friend to talk with them.
One thing that all teenagers have in common is that they are
easily embarrassed – especially by their parents. Appearances
are very important to them and they may need reassurance that,
fully dressed, you will look the same as before. If you are going
to have chemotherapy you may want to talk to them about the
possibility of losing your hair and that it will grow back.
Your illness may come at a particularly difficult time for teenagers.
It is normal for teenagers to be struggling with feelings of wanting
independence and to break away from their parents or family, and
they may not know how to negotiate with a parent who needs
to depend on them for a change. They may feel torn between
wanting to be there for you and dealing with their own lives or
problems, such as relationships, friends and exams.
‘They have had to adapt a bit, as I’m not always
available to be a taxi driver, but they have managed,
and discovered that it IS possible to get from A to B
on a bus!’
Jenny
Visit www.breastcancercare.org.uk
28 | How children may react
‘They all understood. My mother died of breast cancer
when I was 15 so they were familiar with the term
mastectomy. Deborah asked some questions – how
long had we known, how did we find out, when would
they operate, how was I? She told me afterwards that
she put down the phone, went into her bedroom and
cried and prayed. Naomi and Emily both came and sat
on my knee and sobbed. They were both very upset
and frightened. They were aware of my experience as
a child, and Naomi’s friend’s mother had died of breast
cancer recently.’
Eleanor
‘Chris used the word breast cancer when talking to
Natasha. Natasha asked, “Are you going to die?” We
assured her that I would not and she responded with,
“Oh, I thought it was something serious!” Natasha then
wanted to leave the room and go back downstairs to
her friend.‘
Perlita
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 29
Keep talking
Telling your children that you have breast cancer,
answering their questions and dealing with their initial
responses may be just the beginning. There will be
ups and downs before your treatment is finished and
you are feeling well again. Throughout that time it’s
important to keep the lines of communication open.
From time to time there will be fresh news to give your children
about your treatment and the results. They will probably come up
with new questions in response to the news. Often the questions
may take you by surprise, perhaps when you’re cooking or
watching TV rather than when you’re ready and prepared.
You may want to consider encouraging older children to talk with
your doctors and nurses, perhaps when you go for a hospital
appointment. This can help them to realise that a lot is being done
to help you and that hospitals can be friendly, supportive places.
‘Emily told me recently that she overheard me making
phone calls telling relatives and close friends the news.
She said she hated hearing me say over and over again
that there was cancer in my breast. I wish I had made
sure she wasn’t within earshot, or that I had delegated
that task since Emily didn’t want to leave my side.’
Eleanor
‘I told all the children that I would discuss it with
them at any time and not hide the truth from them.
I was open with them all the time and they would often
tease me about aspects such as losing my hair.’
Karen
Call our Helpline on 0808 800 6000
Talking with your children about breast cancer | 31
Children can be very accepting or very curious of physical
changes and after surgery they may ask about your scar or
whether you look different. You might want to explain to them
what the surgeons have done, but whether or not you show
them will depend on you and them and what is normal in your
family. The question may not arise if they are not used to seeing
you undressed, but if they are, it may simply happen naturally.
You may need some extra privacy for a while – you can explain
that you’re not shutting them out, you just need a little time. Your
children may wonder what you’re using to replace your missing
breast if you’ve had a mastectomy. If you are wearing a prosthesis
they may want to see and feel it.
If you’re planning reconstructive surgery, you may decide to wait
until it’s completed before asking your children how they feel
about seeing what you look like. Again, if you explain why you’d
rather wait, your children will feel less excluded and anxious.
If you are having radiotherapy or chemotherapy, you may want
to warn your children that you might feel ill, grumpy or tired at
times and you might need some extra help. Being able to help
can make younger children feel important, so perhaps you can
give them one or two small, regular jobs. Older children may be
helpful and co-operative from time to time but it’s important not
to expect them to take on too much responsibility.
‘The main difference it made to them was that Perlita
practically lived with them following the surgery and
for the duration of the chemotherapy. They became
used to Perlita sleeping and resting lot. They were both
able to talk with one or both of us about the diagnosis
and treatment whenever they wanted to.’
Chris
Call our Helpline on 0808 800 6000
Talking with your children about breast cancer | 33
When to seek help
If there are long-standing concerns with your child’s
behaviour or their emotional wellbeing these may
be more noticeable at a time of anxiety (like your
diagnosis of breast cancer or during your treatment)
and this may make their behaviour more difficult to
deal with – especially when you need to be able to
concentrate on your own health and wellbeing.
Try to see if you can understand the meaning of the behaviour
rather than react to it. If you notice your child having long periods
where they are feeling low, withdrawn or not being interested in
what is going on around them talk to your GP or treatment team.
If necessary they can refer your child to a counsellor or to your
local child and adolescent mental health service.
‘They were very upset and Emily had nightmares. But
we found many ways to distract ourselves and make
things easier. Naomi helped me design a quilt to make
during treatment and Emily helped chose the fabric.
We spoke to Deborah a lot more frequently on the
phone and kept her up to date. She wrote me long
encouraging letters. They supported each other – and
still do, knowing the condition is terminal.’
Eleanor
Call our Helpline on 0808 800 6000
Talking with your children about breast cancer | 35
When treatment is over
When your treatment is finished, it’s understandable
that your children want you ‘back to normal’ as soon
as possible. They may want reassurance that you’re
better and won’t be ill again, but they also want their
own lives to return to normal. This may not always be
straightforward for the whole family, particularly in the
early weeks and months. Children may find this hard to
grasp, especially if they feel they have been thoughtful
and considerate during treatment. You may need to
explain that getting better can take quite a long time,
weeks or even months.
They may also have lingering doubts about your recovery. When
you have a follow-up appointment this might be a worry for them
as well as you. Also, if someone they know is later diagnosed
with cancer, or someone’s mum has died, it can bring some of
the worries back. You need to try to continue to be as honest as
you can, without making promises you may not be able to keep.
It is probably best to say that you and your doctors hope that
you won’t be ill again and reassure your children that, whatever
happens, they will always be looked after and cared for.
Once again, talking with them about how you and they feel is
probably the best way to deal with any concerns. If you have
been able to establish an open and trusting relationship during
your cancer, you will hopefully be able to continue to talk about
your feelings and acknowledge any worries that arise.
Each stage of your treatment and recovery will bring different
feelings, different anxieties and different highs and lows. But
if you are able to talk honestly and openly with your child or
children at each step, most families can be a great source of
love and support.
Call our Helpline on 0808 800 6000
36 | When treatment is over
‘Make plans for after treatment is finished and between
treatments as this shows them that life will get back
to normal.’
Karen
‘I wish I’d been able to keep on top of my own emotions
a bit more and not shouted at them for silly things,
particularly at the very beginning when I was trying to
get my head round the diagnosis. That made me feel
really guilty, and I cried myself to sleep that night
because I’d taken out my worries on my lovely girls.’
Jenny
‘In many ways, having cancer when I did had many
positives. I was able to take Rhodri to school for all of
his first year at school, which I wouldn’t have done if I
hadn’t been diagnosed. It helped him and me come to
terms with the life-changing diagnosis.’
Catrin
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 37
Further support
Breast Cancer Care
From diagnosis, throughout treatment and beyond, our services
are here every step of the way. Here is an overview of all the
services we offer to people living with and beyond breast cancer.
Helpline
Our free, confidential Helpline is here for anyone who has
questions about breast cancer or breast health. Your call will be
answered by one of our nurses or trained staff members with
experience of breast cancer. Whatever your concern, you can be
confident we will understand the issues you might be facing, and
that the information you receive is clear and up to date. We will
also let you know where else you can go for further support.
Website
We know how important it is to understand as much as possible
about your breast cancer. Our website is here round the clock
giving you instant access to information when you need it. As well
as clinical information, you’ll find real life experiences and a daily
newsblog on stories about breast cancer in the media. It’s also
home to the largest online breast cancer community in the UK,
so you can share your questions or concerns with other people in
a similar situation.
Our map of breast cancer services www.breastcancercare.
org.uk/map is an interactive tool, designed to help you find
breast cancer services in your local area, wherever you live in
the UK.
Call our Helpline on 0808 800 6000
38 | Further support
Discussion Forums
Through our Discussion Forums you can exchange tips on
coping with the side effects of treatment, ask questions, share
experiences and talk through concerns online. Our dedicated
areas for popular topics should make it easy for you to find the
information you’re looking for. The Discussion Forums are easy
to use and professionally hosted. If you’re feeling anxious or just
need to hear from someone else who’s been there, they offer
a way to gain support and reassurance from others in a similar
situation to you.
One-to-One Support
Our One-to-One Support service can put you in touch with
someone who knows what you’re going through. Just tell us
what you’d like to talk about (the shock of your diagnosis,
understanding treatment options or your feelings after finishing
treatment, for example), and we can find someone who’s right
for you. Our experienced volunteers give you the chance to talk
openly away from family and friends.
Live Chat
We host weekly Live Chat sessions on our website, offering you
a private space to discuss your concerns with others – getting
instant responses to messages and talking about issues that are
important to you. Each session is professionally facilitated and
there’s a specialist nurse on hand to answer questions.
Ask the Nurse
If you find it difficult to talk about breast cancer, we can answer
your questions by email instead. Our Ask the Nurse service is
available on the website – complete a short form that includes
your question and we’ll get back to you with a confidential,
personal response.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 39
Information and Support Sessions and Courses
We run Moving Forward Information and Support Sessions for
people living with and beyond breast cancer. These sessions
cover a range of topics including adjusting and adapting after
a breast cancer diagnosis, exercise and keeping well, and
menopause. In addition, we offer Lingerie Evenings where you
will learn more about choosing a bra after surgery.
We also offer a HeadStrong service where you can find
alternatives to a wig and meet other people who understand
the distress of losing your hair. Our Younger Women’s Forums,
Living with Secondary Breast Cancer courses and Seca Support
Groups for people with secondary breast cancer are also here to
offer specific, tailored support.
Information Resources
Our free Information Resources for anyone affected by breast
cancer include factsheets, booklets and DVDs. They are here to
answer your questions, help you make informed decisions and
ensure you know what to expect. All of our information is written
and reviewed regularly by healthcare professionals and people
affected by breast cancer, so you can trust the information is up
to date, clear and accurate. You can order our publications using
our order form, which can be requested from the Helpline. All our
publications can also be ordered or downloaded as PDFs from
our website.
Call our Helpline on 0808 800 6000
40 | Further support
Further reading
Books for parents
Breast cancer and your child’s school
Breast Cancer Care, 2011
This factsheet is to help people affected by breast cancer
communicate with their child’s school about their diagnosis
and treatment.
Talking To Children When An Adult Has Cancer
Macmillan Cancer Support, 2011
A booklet and CD outlining steps parents can take to help their
children understand what is happening.
As Big as it Gets: Supporting a Child When a Parent is
Seriously Ill
Julie Stokes and Di Stubbs
Winston’s Wish, September 2007
ISBN 978 0 9539123 9 1
This booklet aims to help parents and children cope with a
serious illness in the family.
How To Talk So Kids Will Listen and Listen So Kids Will Talk
Adele Faber and Elaine Mazlish
Piccadilly Press, April 2001
ISBN 1 85340 705 4
A guide to practical and effective communication with children.
American. There is also a version aimed specifically at teenagers.
Books for children
Mummy’s Lump
Breast Cancer Care
For young children, this picture book is for any family who needs
to talk about the difficult subject of cancer. It covers diagnosis,
going to the hospital, treatment and hair loss.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 41
The Secret C – Straight Talking About Cancer
Julie A Stokes
Winston’s Wish, 2009
ISBN 0955953928
A book to help adults and children talk openly about the issues
and feelings involved when someone has cancer. For ages 7-10.
Sammy’s Mommy Has Cancer
Sherry Kohlenberg
Magination Press, New York, 1993
ISBN 0 945354 55 X
A sensitive, straightforward, illustrated American storybook for
children aged 3–8.
The Rainbow Feelings of Cancer: A book for children who have
a loved one with cancer
Carrie Martin and Chia Martin
Hohm Press, October 2001
ISBN 189077216X
An American book with the pictures drawn by the child which is
quite realistic and down to earth and could be useful as a starting
point for conversations about living with a parent with cancer.
The Year My Mother Was Bald
Ann Speltz and Kate Sternberg
Washington: Magination Press, January 2003
ISBN 1557988889
For ages 8–13. The character Clare’s journal and about
scrapbook the year her mother is diagnosed with cancer and
goes through treatment. Clare tells her story, shares her feelings,
and describes her family’s experiences from her mother’s
diagnosis to chemotherapy, surgery and radiotherapy.
Call our Helpline on 0808 800 6000
42 | Further support
Other organisations
General organisations
Daycare Trust
2nd Floor, Novas Contemporary Urban Centre, 73–81 Southwark
Bridge Road, London SE1 0NQ
Tel: 0845 872 6260 (020 7940 7510)
Fax: 020 7940 7515
Website: www.daycaretrust.org.uk
Email: [email protected]
Daycare Trust is a national childcare charity that has been
working since November 1986 to promote high quality affordable
childcare for all. Offers information and services to help people
make the right decision about childcare for their child.
Partnership for Children
26–27 Market Place, Kingston upon Thames, Surrey KT1 1JH
Telephone: 020 8974 6004
Website: www.partnershipforchildren.org.uk
Email: [email protected]
An independent charity that works to promote the mental health
and emotional wellbeing of children and young people around
the world.
Riprap
Website: www.riprap.org.uk
A website offering support and advice for 12–16 year olds who
have a parent with cancer. Includes real-life stories, discussion
forums, information and tips.
Visit www.breastcancercare.org.uk
Talking with your children about breast cancer | 43
Cancer organisations
Macmillan Cancer Support
89 Albert Embankment
London SE1 7UQ
General enquiries: 020 7840 7840
Helpline: 0808 808 0000
Website: www.macmillan.org.uk
Textphone: 0808 808 0121 or Text Relay
Macmillan Cancer Support provides practical, medical, emotional
and financial support to people living with cancer and their carers
and families. Over the phone, its cancer support specialists can
answer questions about cancer types and treatments, provide
practical and financial support to help people live with cancer.
Its website features expert, high-quality information on cancer
types and treatments, emotional, financial and practical help,
and an online community where people can share information
and support. Macmillan also funds expert health and social care
professionals such as nurses, doctors and benefits advisers.
Call our Helpline on 0808 800 6000
Breast Cancer Care is here for anyone affected
by breast cancer. We bring people together,
provide information and support, and campaign
for improved standards of care. We use our
understanding of people’s experience of breast
cancer and our clinical expertise in everything we do.
Visit www.breastcancercare.org.uk or call our
free Helpline on 0808 800 6000 (Text Relay 18001).
Interpreters are available in any language. Calls may be monitored for training
purposes. Confidentiality is maintained between callers and Breast Cancer Care.
Central Office
Breast Cancer Care
5–13 Great Suffolk Street
London SE1 0NS
Telephone 0845 092 0800
Fax 0845 092 0820
Email [email protected]
© Breast Cancer Care, December 2011, BCC50
Edition No 4, next planned review 2013
ISBN 978 1 907001 61 1
Registered charity in England and Wales (1017658)
Registered charity in Scotland (SC038104)
Registered company in England (2447182)