Young persons guide to lymphoma - Lymphoma Association

For people with Hodgkin lymphoma
and non-Hodgkin lymphoma

Contents
Getting started 3
About lymphoma 5
Myth buster 5
Lymphoma 6
The lymphatic system 6
Tests 8
Diagnosis – types of lymphoma 17
Staging 19
What staging for lymphoma means 20
About treatment 23
Your care 23
Staying in hospital 26
Clinical trials 32
Treatments 33
Side effects of treatment 41
Continued overleaf
1

Living with it 61
Going home from hospital 61
Eating well 61
Alcohol and recreational drugs 63
Exercise 63
Feelings 65
Relationships 68
School, college and work 76
Afterwards 79
Feelings 79
Hospital check-ups 82
After cure – medical matters 84
After cure – other matters 89
Helping others – having fun 90
Getting more help 91
Jargon buster 95
2

Getting started
This book is for you…
…if you are a young person who has lymphoma.
It gives information about lymphoma and how it is treated.
It also covers ways you can look after yourself, and how
you may feel.
It is divided into sections. You don’t need to read them
in order. As well as information, a section may contain
questions and answers; quotes from young people and
hints and tips.
You will see things written in different ways throughout
the booklet.
Hi!
Text shown in speech marks are
quotes from people who have
had lymphoma.
TOP TIPS
))
don’t panic
TOP TIPS will give you ideas
about how to cope with certain
aspects of your lymphoma and
its treatment.
3

!
Read me
See page 14 u
Jargon buster
Text shown in a white box
alongside a pink exclamation
mark is very important.
Text shown in these white boxes
tells you where to go for more
information.
Words in this colour are explained
in the glossary on page 95.
Young people who have lymphoma are as different
from each other as young people who do not, so you
may find some things in this booklet very helpful and
others not at all.
What you find useful could change as you go through
treatment.
You may want to show this booklet to your friends and
family so they have some idea of what is going on in your
life at the moment.
4

About lymphoma
Myth buster
Did I catch lymphoma from someone
No, you cannot catch lymphoma. You can’t give it to
anyone else either.
Do I have lymphoma because of something
I’ve eaten or drunk
There is no evidence linking what you eat or drink with
developing lymphoma.
Is it something I’ve done that’s given me
lymphoma
Nothing you have done, or that other people have said
or done has caused it. There is no evidence that stress
or exercise (or lack of it) cause lymphoma.
Did I get lymphoma from my parents
No. Lymphoma is not inherited from your parents.
Will my brothers and sisters get it
Usually your brothers and sisters won’t get it.
Why me
At the moment, no one can say why you have developed
lymphoma.
5

Lymphoma
What is lymphoma
It is a type of cancer. Cancer occurs when cells are out
of control. The cells divide when they don’t need to and
then there are too many and this causes a problem. In
lymphoma the cells affected are white blood cells (called
lymphocytes) which travel around the body in a fluid
called lymph. These abnormal cells can clump together
to form a tumour.
What is lymph
Lymph is a clear watery fluid that contains lymphocytes.
The body uses these cells to fight infection. The
lymphocytes are mainly found in the lymph glands or
lymph nodes, but they circulate around the body in both
the bloodstream and the lymphatic vessels (see below).
The lymphatic system
The lymphatic system is a complicated network of very
narrow tubes (lymphatic vessels) and lymphatic tissue.
There is central lymphatic tissue – made up of the bone
marrow and the thymus (which is a gland in the chest).
There is also other lymphatic tissue – including the spleen
and lymph nodes. The lymphatic system produces cells
which fight infection.
Lymph travels all round this network. Lymphoid cells
gather in lymph nodes or glands to help fight infection
and prevent it from travelling round your body.
6

The lymphatic system
Lymph nodes
in the neck
Lymph vessels
Lymph nodes
in the armpit
Thymus
Diaphragm
(muscle that
separates the chest
from the abdomen)
Spleen
Liver
Lymph nodes
in the groin
7

In the past you may have noticed swollen glands in
your neck when you have had a sore throat or earache.
These are enlarged lymph nodes that have been fighting
against infection.
There are groups of lymph nodes in different parts of the
body. You can see from the diagram on page 7 where
these groups are and the lymphatic vessels connecting
them.
Lymphoma can start anywhere in your body. It can be
in the lymphatic system or it can spread outside the
lymphatic system to almost any of your body’s organs or
other tissues, including your liver, bone and lungs.
Tests
You will have a lot of tests before, during and after
treatment. This is because it’s important that the doctors
treating you find out what type of lymphoma you have and
where it is in your body. The treatment you get depends on
the type of lymphoma and the stage of disease you have.
See section on Staging on page 19 u
Biopsy
A biopsy is a test which involves the removal of cells or
tissue which are then looked at under a microscope. You
may already have had a biopsy of a lymph node, as this is
the main way of confirming suspected lymphoma.
8

You will probably not get the results from the biopsy
straightaway. It is quite a complicated laboratory procedure.
Waiting isn’t easy, but it is important to know what type
of lymphoma you have, so that you can have the right
treatment.
What happens
The way a biopsy is taken depends on where in the body
the lymphoma is.
Often a whole lymph node is removed. You would usually
have a general anaesthetic for this and so will be asleep
when it is done.
Sometimes a small piece of the node is removed. You
may only need a local anaesthetic for this, but your doctor
will talk to you beforehand to get your agreement.
Scans
Why am I going to have a scan
Scans are needed because a lot of the lymph nodes are
deep within your body and can’t be felt from the outside.
X-rays and scans will show if there is lymphoma in other
parts of the body.
9

Why are there different scans
Each scan uses different technology to build a picture of
what is inside you.
Don’t worry if you have a different type of scan to
someone else; your doctor will have decided the most
appropriate type for you.
Some scans are better than others at seeing different
parts of the body. For example, ultrasound scans are good
for checking the liver and abdomen.
What are the main types of scan
CT (or CAT scan) – builds an image by taking lots of X-rays
MRI – builds an image using magnetic waves
PET – builds an image by measuring radioactive sugar
taken up by lymphoma cells
Ultrasound – builds an image using sound waves
CT (or CAT scan)
CT stands for computed tomography (CAT for computed
axial tomography). An X-ray camera takes a lot of pictures
from different angles and a computer builds up a 3D
picture of the inside of your body.
You normally swallow a special drink with dye in it, which
makes your insides easier to see. Then you lie on a bench
which slides your body through a camera that is shaped
like a ring doughnut. It is open at both ends.
You need to lie still. A CT scan doesn’t hurt and takes
between 5 and 30 minutes, depending on how much of
the body is scanned.
10

TOP TIPS for CT scans
))
ask for help before the test if you are feeling worried
))
take off any jewellery
))
if your ears are pierced (or any other part of your
body) take out studs or rings
))
remember you can talk through the intercom
))
it might be possible to listen to music during the scan
MRI scans
MRI stands for magnetic resonance imaging. MRI
scans build up a 3D picture of the inside of your body
by measuring changes in magnetic waves as they pass
through you.
You lie on a bench that moves you into a cylinder which is
open at one end. Because the machine contains magnets,
you must take off all jewellery (including body jewellery),
and you can’t use any devices like iPods or phones. An
MRI scan doesn’t hurt, but it is very noisy and takes
about an hour.
TOP TIPS for MRI scans
))
tell staff the day before if you are afraid of closed-in
spaces
))
staff can play music for you to drown out the noise
))
remember to take off all jewellery
))
if your ears are pierced (or any other part of your
body) take out studs or rings
))
tell someone if you have any metal in you, such as
staples from your biopsy or pins or plates if you
have broken bones in the past
11

PET scans
PET stands for positron-emission tomography. A PET scan
measures radioactivity. A series of readings is used to
build up a 3D picture of your insides. A PET scan can help
doctors to tell the difference between scar tissue and
active lymphoma cells.
You will have an injection of a sugary liquid with a very
small amount of radioactivity in it. Lymphoma cells
absorb much more of the sugary liquid than normal cells
and that is why your lymphoma cells can be seen as
‘hot spots’ on these scans. You will be asked not to eat
anything (not even snacks or sweets) for a few hours
before the scan. You wait for about an hour between the
injection and the scan itself.
You lie on a bench, and the scanner moves over you. It is
open at both ends.
TOP TIPS for PET scans
))
tell staff the day before if you are afraid of closed-in
spaces
))
don’t eat or exercise for a few hours before the
scan (you will be told how long to avoid these for)
))
staff can play music for you to help pass the time
(you won’t be able to use devices like an iPod or
mobile phone)
PET/CT scans
These scanners combine both PET and CT methods of
gaining images.
12

Ultrasound scans
Ultrasound uses high-energy sound waves to create an
image. It is often used for scanning the abdomen.
A gel is rubbed onto the skin over the bit of your body
being scanned. You lie down, and a technician moves a
reader (which looks like a fat pen) over the gel to produce
a picture on a small screen. It doesn’t hurt, and usually
takes about 15 minutes. The gel is rather sticky, but the
technician will wipe it off.
Bone marrow biopsy
Why do I need this test
It is quite common for lymphoma to be found in the bone
marrow, which is the spongy filling in the middle of some
of your bones – where blood cells are made. Doctors need
to know whether lymphoma is in your bone marrow so
they can decide on the best treatment for you.
What happens
This might be done either under a general anaesthetic or
just under sedation but with a local anaesthetic to numb
the skin. You lie on your side, and a needle is inserted
through the skin into the back of your pelvic (hip) bone.
You will feel some pressure as the needle enters the
bone, and a small sample of bone marrow is taken. You
might feel a bit sore afterwards.
TOP TIPS for bone marrow biopsy
))
take painkillers to help with soreness
))
tell a nurse or doctor if the place where the needle
went in goes red, is swollen or bleeds
Lumbar puncture
13

Lumbar puncture
Lumbar puncture, or LP for short, is part of staging for
people with non-Hodgkin lymphoma (but not for people
with Hodgkin lymphoma).
Why do I need a lumbar puncture
The spinal cord and the brain are surrounded by a fluid
called cerebrospinal fluid, or CSF for short. Sometimes
lymphoma gets into this fluid. A lumbar puncture test
will find out if you have lymphoma in your CSF. You may
also have a lumbar puncture to give you chemotherapy
treatment.
The lower part of your back is called the lumbar spine. A
lumbar puncture collects a sample of your CSF from the
space between two bones in your lumbar spine.
What happens
Usually you will lie on your side with your knees bent. You
will have a local or general anaesthetic. The doctor will
feel for a gap between two bones in your lower back. A
needle is put into the gap to collect the fluid. You need
to lie very still while the fluid is collected. Some centres
might give you Entonox gas to help with the pain if you
have a local anaesthetic.
When the fluid is collected the needle is taken out of your
back straightaway and a dressing will be put over the tiny
needle hole. You can take this off the next day. A lumbar
puncture takes about 10–20 minutes, but it can take
longer if you are being given chemo. Some people get a
14

headache after having a lumbar puncture, so the staff will
often ask you to lie flat afterwards to help prevent this.
TOP TIPS to avoid headache
))
drink plenty of water
))
take a painkiller if needed
Blood tests
Why all these blood tests
Blood tests are vital because blood samples help to
find problems and check how well you are coping with
the treatment. You will have a lot of blood tests during
treatment. These show things like whether you are
likely to get an infection and when it is safe to give
more treatment.
Blood for testing is either taken from a vein in the arm or
from a fingerprick. Tell a member of the healthcare team
if you are scared of needles. If you have a central line,
blood may be taken from there.
See Chemotherapy section on page 33 u
Treatment for lymphoma affects normal blood cells as
well as lymphoma cells. It is important to know if you
have enough of each type of blood cell – the doctors and
nurses looking after you will monitor these levels very
carefully throughout your treatment. The main types of
blood cell are described in the table on page 16.
15

Description of blood cells
White cells Red cells Platelets
Medical
name
Neutrophils
and
Lymphocytes
Erythrocytes
Platelets
What the
cells do
Fight infection Carry oxygen Stop
bleeding
Name of
shortage
Neutropenia
and
Lymphopenia
Anaemia
Thrombocytopenia
Shortage
may mean
Getting
infections
Being
pale, tired,
breathless,
cold, dizzy
Bruising
easily,
bleeding
longer
Possible
actions
if cell
numbers
are too
low
Delay
treatment
Give antibiotics
if there are
signs of
infection
Delay
treatment
Red cell
transfusion
Delay
treatment
Platelet
transfusion
16

Your doctors will advise you about your blood counts.
When your white cell count drops, and your neutrophil
count is below 1, you are said to be neutropenic. If you
are unwell at this time or have a high temperature you
will be admitted to hospital to be checked over and to
be started on antibiotics.
If you don’t have enough haemoglobin (a chemical found
in red cells) or platelets, you can be given the red cells
or platelets you need into your veins from a bag, using a
drip. This is known as a ‘transfusion’ and the contents of
the bag comes from blood donors.
Diagnosis – types of lymphoma
After all your test results have been looked at you will be
told what type of lymphoma you have and where it is in
your body.
What types of lymphoma are there
There are many different types of lymphoma. They are
divided into two main groups – Hodgkin lymphoma (HL)
and non-Hodgkin lymphoma (NHL).
What’s the difference between Hodgkin
lymphoma and non-Hodgkin lymphoma
In Hodgkin lymphoma the biopsy shows cells called
‘Reed–Sternberg cells’ or ‘Hodgkin cells’. These are not
present in non-Hodgkin lymphoma. Hodgkin lymphoma is
more common in teenagers than non-Hodgkin lymphoma.
17

There are two main types of Hodgkin lymphoma:
))
Classical Hodgkin lymphoma (cHL) – which makes up
about 95% of cases
))
Nodular lymphocyte-predominant Hodgkin lymphoma
(NLPHL) – a rarer type.
Within the classical group there are four subtypes
(nodular sclerosing, mixed cellularity, lymphocyte-rich
and lymphocyte-depleted), but these are all treated in
the same way and there is no difference in cure rates
between them.
Nodular lymphocyte-predominant Hodgkin lymphoma grows
more slowly and behaves differently. It can be treated with
much less therapy than is needed for classical Hodgkin
lymphoma.
There are many different types of non-Hodgkin lymphoma.
They are divided into B-cell and T-cell lymphomas. B cells
and T cells are types of lymphocytes. They develop from
immature cells called stem cells.
Types of NHL include:
))
T-cell and B-cell lymphoblastic lymphoma
))
Burkitt lymphoma
))
diffuse large B-cell lymphoma
))
anaplastic large cell lymphoma.
It was a real shock. I didn’t even know
you could get cancer as a teenager - I thought
only old people got it.
18

TOP TIPS about finding information
))
a lot of books are very out of date; a lot of statistics
are too general
))
the best people for you to talk to about your
lymphoma are the people looking after you –
what they tell you will apply to you in particular
))
think before you use the internet – there is a huge
amount of information and it can be misleading
or worrying. Check it is up to date and relevant to
your lymphoma
Staging
What is staging
Staging describes how much lymphoma you have in your
body and where it is. The stage is used to help decide on
your treatment.
Will I be cured
The cure rates for children and teenagers with lymphoma
are very high. All types of lymphoma can respond very
well to treatment. Your consultant is the best person to
ask about cure rates.
Is the treatment the same for the different types
of lymphoma
Chemotherapy is the main treatment for lymphoma in
young people. Radiotherapy can also be used in around
half of young people with Hodgkin lymphoma, but is rarely
used for people with non-Hodgkin lymphoma.
19

The treatment you are given depends on your exact
diagnosis and the stage of your lymphoma. Sometimes
people worry if their treatment is different from another
person’s. Please don’t worry – your treatment is designed
especially for you.
What staging for lymphoma
means
The numbers 1 to 4 are used to show which parts of the
body are affected by your lymphoma. The letters A or B
describe whether or not you have certain symptoms.
Stage 1 is low stage and Stage 4 is advanced stage. You
might see the numbers sometimes written as Roman
numbers I to IV (see table opposite).
I have Hodgkin lymphoma stage 3A, what does
that mean
The number 3 means that lymph nodes in both the upper
and lower body are affected. ‘A’ means that you don’t
have night sweats, fevers or unexplained weight loss.
These things are known as B symptoms.
Stage letter
A
B
What it means
You have not had any B symptoms (the
technical word is ‘asymptomatic’)
You have had one or more of the
B symptoms. B symptoms are
unexplained weight loss, drenching
night sweats or high fevers
20

Stage number
Stage 1 (I)
Stage 2 (II)
Stage 3 (III)
Stage 4 (IV)
Where the lymphoma is
You have lymphoma in one group of
lymph nodes
or
You have lymphoma in just one
organ or area of the body
You have lymphoma in two or more
groups of lymph nodes that are on
the same side of your diaphragm
(the sheet of muscle across the
bottom of the ribcage that separates
the chest from the abdomen)
or
(For NHL only) in the digestive tract
but it has been removed by operation
You have lymph nodes affected on
both sides of the diaphragm
or
(For NHL only) in the abdomen (but
cannot be removed by operation) or
in the chest
You have lymphoma in the bone
marrow or central nervous system
or
(For HL only) your lymphoma has
spread outside the lymph nodes, for
example to the liver or bone marrow
or lungs
21

About treatment
Your care
You will be referred to a cancer specialist with experience
of treating lymphoma. This person will either be an
oncologist (a doctor who specialises in treating cancers)
or a haematologist (a doctor who specialises in treating
disorders of blood cells).
If you are under 19, the government has said that you
should be seen at a principal treatment centre (PTC)
which specialises in treating young people with cancer.
The teams at these centres have the expert medical
knowledge to treat your cancer and they understand the
needs of teenagers and their families.
As there are not many PTCs, you may have to travel some
distance to get to one. Sometimes you may have treatments
and follow-up visits at a hospital or centre closer to your
home – possibly in a teenage and young adult unit. This
is known as ‘shared care’.
Who will be taking care of me
You will be cared for by a team of health professionals
with different areas of expertise. One member of this
team will be your main point of contact or ‘key worker’.
This means that you have one regular person to call on
23

even if you are seeing lots of other professionals. Your
key worker will normally be a clinical nurse specialist
(often known as a ‘Teenage and Young Adult’ or ‘TYA’
specialist nurse), but may be another member of the
team.
There was so much going on that first
day – it was go here, go there, and see that
person next. Later on, I got the idea of who
does what.
What doctors will I see
Your consultant or specialist is the person in charge of
planning your treatment, keeping an eye on your progress,
and seeing you after treatment ends. Sometimes your
consultant will give day-to-day responsibility to other
doctors such as registrars and junior doctors. Your GP is
also important and should be kept informed by the hospital.
24

Who else
Besides your key worker, there are lots of other people
you will come across:
A research nurse will look after you if you take part in a
research trial.
Radiographers and medical technicians will be there
when you have X-rays or scans.
Activity coordinators can arrange activities to help you
through your treatment.
Dietitians give advice about eating during your treatment.
Physiotherapists and occupational therapists will help
you to keep fit and active.
A social worker can help you and your family deal with
the impact of the illness and give practical advice about
money and other help that you might need.
Teachers are part of some units and they can help you
keep up with your school work.
It is a good idea to think through with your parents or
guardians how both they and you will act when you have
a consultation with medical staff. For example, do you
want to lead the discussion or would you prefer staff to
talk to you and your parents equally This way you can
avoid feeling left out because staff seem to be talking to
your parents rather than to you. Also, your parents may
sometimes feel that they are not being told things.
25

When you have decided together on the way you want to
do things, tell the medical staff what you have agreed.
The activity coordinator, Ben, was great
– he helped distract me when I was having a
needle in or when times were bad.
Staying in hospital
You might hear your doctors talk about being an ‘inpatient’.
This means that you stay in hospital. ‘Outpatient’ means
that you visit hospital for treatment but go home afterwards.
It is possible you will have to stay in hospital during
treatment for lymphoma. How much time you spend as
an inpatient will vary.
Since 2005 the government has recommended that
people under the age of 19 should be offered inpatient
care at units designed for their age group. At the moment
there are two groups which support these centres: the
Children’s Cancer and Leukaemia Group (CCLG) and the
Teenage Cancer Trust (TCT).
See Getting more help section on page 91 u
Your doctor or key worker will explain the options to you.
It is likely they will recommend treatment at a special unit.
26

If you are receiving shared care, you may be offered a
place on a children’s ward locally, a ward for young adults
or an adult ward.
A parent or carer can stay overnight with you at most
special units if you want them to.
If you haven’t stayed in hospital before, you may have some
rather strange ideas about it. On television and in books
people are almost always lying in bed. You will probably
spend far more time up and about than you thought.
It’s better here than on the children’s
ward – the games room is great to hang out
in, and no one comes round dressed up as the
Easter bunny!
27

I’ve got my own room at home, so being
in a ward with other people around all the time
was weird. After a bit I just drew the curtains
round my bed when I wanted to be alone.
There is usually a room where you can watch television or
listen to music. In some hospitals there is wifi or internet
access. You can listen to music and watch downloads on
your phone or tablet if you have headphones.
There may be a kitchen where you can make snacks,
often with a fridge where you can keep food and drinks.
There may also be a quiet or study room where you can
read or do school or college work. You will have tuition
while you are in hospital if you are school age.
I’ve got my phone and my iPad – my two
most precious things in here.
TOP TIPS for staying in hospital
))
keeping in touch with what’s going on at school,
college or work can help you feel more normal
))
bring things from home to make your space friendly
and comforting
))
wear your own clothes, and get dressed whenever
you can
))
whenever possible ask friends as well as family
to visit you
28

I always seem to be waiting – what can I do
However hard people try, you are almost certain to have
to wait at times. See the tips below for waiting.
TOP TIPS for waiting
))
buy a favourite magazine
))
write down any questions you have – write the
answers down too when you get them
))
if you are studying, take a textbook – it’s a good
distraction
))
take a book or ebook that’s easy to get into
))
take your phone or tablet with you so you can listen
to music or play games (take your headphones too)
))
start a diary or blog and write down your thoughts
while you are waiting
Do I have a choice about what treatment I have
With lymphoma, the good thing is that the treatments are
very successful and most young people are cured. There
are UK guidelines setting out the ‘best’ treatment for each
type of lymphoma. You will be offered the treatment which
is recommended for your type of lymphoma. If there are
treatment choices, these will be explained to you.
See Clinical trials on page 32 u
It is a doctor’s duty to recommend what they believe to
be the best treatment for you. If there is one treatment
which your doctor considers the best, you will only be
offered this treatment.
No treatment can be carried out without your agreement.
29

I am under 16 – does this change things
If you are under 16, the written agreement of your parent
or guardian may be needed for certain treatments.
This written agreement is known as a ‘consent form’.
For example, a signed consent form is needed for
chemotherapy treatments. You may be asked to sign
an ‘assent form’ which shows that you are happy to go
ahead with the treatment.
If you are 16 or over you can sign your own consent form.
Is it OK to ask questions
Yes, as many as you need to. Your illness and treatment
should be explained to you in a way that you can
understand.
You should also be told about possible side effects and
who to contact if you have a problem. You should be
involved in decisions that are made about your care.
30

Having said all that, people are very different. Some young
people like to know every detail, while others are happy
just to know the basics.
Nurses and doctors won’t know what sort of person you
are unless you tell them. If you don’t ask questions, they
may think that you are happy with what you know.
TOP TIPS for asking questions
))
if you have a question, ask it
))
if you think a question is silly, ask it anyway – the
doctors and nurses will have heard it all before
))
if you have several questions, write a list
))
if you don’t understand the answer, say so
))
write down the answer
))
if you forget the answer, don’t be embarrassed
to ask again
There’s nothing worse than waiting for
ages to see someone, and then forgetting to
ask them something.
31

Clinical trials
Your doctor will recommend that you are treated either
following nationally agreed treatment guidelines or as part
of a clinical trial.
I’ve been offered treatment as part of a clinical
trial – what does this mean
A clinical trial tests a new treatment against the best
existing treatment, or compares existing treatments
against each other. A new treatment may involve using
new drugs, or it may use the same drugs, but in different
amounts or at different times.
Clinical trials are designed to be safe and ethical. Everyone
taking part is monitored very carefully. A lot of progress
has been made as a result of national and international
clinical trials – and if it weren’t for clinical trials we
wouldn’t know what the best treatment is.
Clinical trials are often ‘randomised’. This means that
the treatment you receive is allocated by chance, not by
you or your doctor. A committee of experts and advisers
has to believe that any new treatment is as good as the
existing one, and that there is evidence that the new
treatment may be better.
Trial results are checked at regular intervals. If one
treatment is clearly better, then the trial is stopped and
that treatment is given to everybody. If you decide not
to take part in a trial, you will be given the best existing
treatment, according to nationally agreed guidelines.
32

Treatments
Chemotherapy
What is chemotherapy
Chemotherapy literally means chemical treatment. The
chemicals, or drugs, used in lymphoma treatment are
described as cytotoxic (cytotoxic means poisonous to
cells). Treatment with cytotoxic drugs is often called
chemo. Chemo drugs are designed to destroy all the
lymphoma cells in your body.
To do this, a combination of drugs is chosen. These
combinations are often known by short names such as
OEPA or COPDAC, where each letter stands for one of
the drugs.
How much of each drug you are given, and how often,
is called the treatment regimen.
How long will it last
The length of chemotherapy varies depending on your
diagnosis and treatment plan. It may last from a few weeks
to up to 2 years. Sometimes you may have treatment as an
outpatient, other times you may need to stay in hospital.
t See Staying in hospital on page 26
Chemo is given in cycles of treatment weeks followed by
drug-free days, which allow the body to recover and start
making normal blood cells again. A series of cycles makes
up a course of treatment.
33

No one can say exactly how long treatment will last.
Each person reacts in their own way, and sometimes
chemo needs to be delayed until your body has recovered
enough to start the next course. This is because chemo
destroys some of your normal cells as well as destroying
your lymphoma cells.
Why do I have a mixture of drugs
Each drug works differently. For example, one drug may
stop nourishment getting into lymphoma cells so that they
die off. Another drug might interfere with the lymphoma
cells when they are on the point of dividing, so they
cannot increase in number.
How is chemo given
Some chemo drugs are given orally and swallowed. Some
are given into a vein. Some people with non-Hodgkin
lymphoma have chemo directly into their spinal fluid
(intrathecally).
t See Lumbar puncture on page 14
If your chemo will be given through a vein, you will
probably be fitted with a central line. This is a thin flexible
tube which is inserted into a vein. They are called central
lines because the tip of the line is placed in a central vein
in your chest. The line is inserted either through a vein in
your arm or directly through the chest wall. Central lines
make it easy to give you chemo, other drugs and red cell
or platelet transfusions. You won’t need to have a needle
or cannula put into your vein every time you need a blood
test or your treatment.
34

There are three main types of lines and your team will talk
to you about which line might suit you:
))
central line (sometimes known by brand names like
Hickman ® or Groshong ® )
))
PICC line
))
port (or portocath).
You will need a minor operation to fit any type of line.
Central lines are usually inserted and removed under
general anaesthetic. The end of it will be outside your
body but your clothes will cover it.
A PICC line is the easiest to insert and remove,
and usually doesn’t need to be done under general
anaesthetic. It is a flexible tube inserted into one of the
large veins in your arm, above your elbow, and is used to
take blood or give chemo. PICC stands for peripherally
inserted central catheter. There are no scars with PICC
lines as they go into a vein.
A port is usually inserted and removed under general
anaesthetic. The port is hidden under the skin so nothing
shows on the outside of your body and it is OK to swim.
These lines allow you to be given all drugs, fluids and
blood products into a vein and allow for blood tests to be
done. Your medical team will talk to you about which one
will suit you best.
When a port or Hickman ® line is removed, you will be left
with a small scar where it was inserted.
35

TOP TIPS for lines
))
don’t go swimming, unless you have a port fitted
))
keep the area around the line dry
))
your nurse will flush the line once a week to keep it
clean; if this is not done, tell someone
))
ask if there is anything you don’t understand
If you do not have a central line, PICC or port, chemo may
be given via a drip into a vein in your arm.
If steroid drugs are part of your treatment they are
usually given as tablets. Steroids help reduce the size of
lymphomas. They may also reduce nausea and help you
feel better. These are not the same steroids sometimes
used by athletes (those are anabolic steroids).
Sometimes lymphoma needs treatment with intensive
chemo combined with a stem cell transplant or a bone
marrow transplant.
Transplants
What is a stem cell
A stem cell is a blood cell which is at an early stage of
development. The body hasn’t yet decided whether the
cell will eventually turn into a red cell, a white cell or a
platelet. Stem cells are produced in the bone marrow.
Will I need a transplant
Sometimes lymphoma has to be treated with high doses
of chemo or radiotherapy. High-dose therapy kills normal
cells in the bone marrow as well as lymphoma cells.
36

When this happens the body can’t make the stem cells
and blood cells that it needs. Receiving (transplanting)
stored stem cells after treatment helps you to recover
more quickly and helps your bone marrow to produce
new blood cells.
Transplants are not needed to treat most lymphomas. If
your doctors think you need a stem cell transplant to cure
you, they will explain this to you. Transplants are used
most often when chemotherapy alone has not cured the
lymphoma.
How does it work
There are two main types of transplant:
))
autologous – when your own stem cells are given back
to you
))
allogeneic – when you get stem cells from another
person (a donor).
The stem cells are collected either from the blood or from
the bone marrow. If stem cells are collected from the
blood, the transplant is called a stem cell transplant. If
stem cells are taken from the bone marrow, the transplant
is called a bone marrow transplant.
Stem cells are collected before high-dose treatment.
Then, after high-dose chemo or radiotherapy treatment,
the stem cells are put back in your body through a drip.
They find their way back to your bone marrow and replace
the damaged cells. This helps you to recover more quickly
and to start making new blood cells.
37

How are stem cells collected from the blood
A drug (G-CSF) is given to encourage the stem cells to
move from the bone marrow into the blood.
Blood is taken from a vein, usually a vein in the arm or at
the top of the leg in the groin. The blood circulates out of
the vein and into a special machine which separates out the
stem cells. The rest of the blood is then returned back into
the body. It takes several hours to collect enough cells.
How are stem cells collected from the bone
marrow
Some marrow is taken from inside the bones of the pelvis
(the hip bones), using a special needle and syringe. You
will have a general anaesthetic for this. The cells are then
carefully stored to keep them healthy. Afterwards, the
pelvis will be sore, but you will be given painkillers to help
with this.
What happens next
Healthy stem cells are now ready for you after your
treatment. The next step is the high-dose treatment, which
aims to kill any leftover lymphoma cells. This may be highdose
chemotherapy or high-dose radiotherapy.
After this you will be given the stem cells into your
bloodstream, using your line or port if you have one.
If you are receiving donated stem cells (an allogeneic
transplant), you will be given drugs to help your body
accept the donated cells (so you won’t reject them).
You can expect to stay in hospital for at least 3 weeks.
Depending on your hospital’s policies, you may be kept in
a protective isolation room. This is because you are very
38

open to infection until the treatment is over and your
bone marrow is working properly again.
During this time some of your family and friends can
come and see you.
TOP TIPS for transplants
))
when your stem cells are being collected, take
something to read, or your music, as you will have
to stay still for 3 or 4 hours
))
always mention your symptoms; there are lots of
ways people can help you
))
don’t forget your mobile phone if you have one –
this should help you feel less alone
))
take any books, game consoles, tablets or laptops
you have when you go in for your transplant, as you
may well feel bored
))
tell staff if you are feeling scared or depressed
))
be prepared for lots of checks and examinations,
at night as well as in the daytime
Radiotherapy
How does it work
Radiotherapy uses powerful X-rays. These are pointed
at the lymphoma cells to destroy them. The beam of
X-rays has to be carefully positioned so that it gets all the
lymphoma cells, but as few good cells as possible.
To do this, the machinery has to be set up for you. Various
marks (or tiny tattoos) will be made on your skin. This
makes sure that exactly the right area is treated.
39

Other parts of your body may be protected with special
metal sheets which don’t let X-rays through.
If you are having treatment to the head or neck, a special
mask will be made for you.
How long is a treatment
It normally lasts a few minutes. A treatment is not usually
painful, but your skin may be sore later.
Will I be radioactive
No. You are not radioactive either during a treatment or
afterwards.
How often will I have radiotherapy
You will normally have one treatment a day, Monday to
Friday. The number of treatments varies for different
people. Usually a treatment course lasts just over 2 weeks.
40

Antibody therapies
What are antibodies
Antibodies are molecules produced by normal cells to
fight infection and foreign cells. The body makes them all
the time. Antibodies can also be made in a laboratory and
a chemotherapy drug can be attached to the antibody. The
antibodies can target the lymphoma cells and deliver the
chemotherapy drug directly into the lymphoma cells.
Rituximab is an antibody drug. Recently, a new type of
antibody drug called brentuximab vedotin has been used in
Hodgkin and non-Hodgkin lymphoma and has shown good
results. Antibody drugs may be used in combination with
chemotherapy drugs to help cure your lymphoma.
Side effects of treatment
Everyone reacts in their own way to treatment. You may
want to read about side effects now. Or you may prefer to
wait and see what happens to you – if so, you might want
to skip this bit for now.
What is a side effect
Treatments such as chemotherapy and radiotherapy are
given to kill cancer cells. However. they may have other
effects besides this. These are known as side effects.
Treatment affects everyone differently – some people
have very few side effects, others have quite a lot.
41

Hair loss
For lots of teenagers, the thought of losing their hair
is devastating. You may feel really scared of what you
are going to look like, and what other people will think.
This section is here to try and help you. It covers some
questions you might have, and gives you some ideas for
making you look and feel OK without your hair.
Will I lose any hair on radiotherapy
You will lose your hair if the X-rays enter or exit your body
through a hairy part of your skin. This will just happen in
the places where the X-rays go in and out.
Will I lose my hair if I’m on chemo
You are very likely to lose your hair. This is because the
drugs used to kill the lymphoma cells will also kill other
fast-growing cells such as hair cells.
Will it all fall out
Most people lose all their hair if they have chemo. For
others it goes very thin on top, or may fall out in patches.
The hair that remains may be weak.
42

When will it start to come out
Usually about 2–3 weeks after your first chemotherapy
treatment.
Will it grow back
Yes. Your hair starts to grow back after your final chemo
treatment. It may not be exactly the same. Sometimes
hair grows thicker, wavier or a different colour.
How long will it take to grow again
It grows at the same rate as before. This means that
between 3 and 6 months after treatment has stopped you
will have a full head of new hair.
When my hair started going thin, this
nurse Nigel said, ‘you’re going to end up looking
like me’ and I said – well at least mine’s going to
grow back!
What about a wig
You may be entitled to one on the NHS. If you want a wig,
talk to your nurse early on and sort it out before treatment
starts. That way you can match your original colour and
style. Or you could go a bit wild and choose something
completely different to your own hair. Wearing a wig will
not interfere with the growth of your new hair.
43

What else could I do
Some people don’t like wigs. You could try wearing a
bandana, hat or scarf. They protect your head and look
good, and you can easily change them when you want.
I thought I might not lose my hair
because it came out really slowly. I kept
it in a plait, but then I cut it off because
it was falling out and got all itchy. I wore a
bandana instead.
What about other hair on my body
Other body hair is not as fast-growing as the hair on your
head. It may or may not be affected. It will depend on
your particular treatment. It will grow back again. In the
meantime, you could pencil in your eyebrow shape or
maybe look at trying temporary tattoos.
44

TOP TIPS for hair care
))
have a short haircut as soon as you can – you and
your friends will have a chance to get used to you
with less hair
))
if you are going to shave your head, do so well
before chemo starts
))
don’t shave during chemo as small cuts can get
infected
))
put on sunscreen in summer if you go out bareheaded
(ask your medical team for suitable makes)
))
cover your head in winter – you lose a lot of heat if
you go bare-headed
))
use a soft hairbrush and gentle shampoo when
your hair is growing back
))
don’t dye your hair until it has grown back fully
))
avoid hairdryers, hair straighteners and tongs
45

Infection
This section aims to help you avoid infection. Although it looks
long, a lot of it is common sense. Usually, it is fine to carry on
going to school or college, seeing friends and doing the things
you normally do. Your key worker will tell you if there is anything
you should definitely do (or not do) at the moment.
Why am I more likely to catch infections
Chemo and radiotherapy kill other cells as well as
lymphoma cells. Neutrophils are the white blood cells
which protect you from infection; these are greatly
reduced during chemo, and are also killed by radiotherapy
to large bones (such as the thigh bone).
When am I most likely to get ill after chemo
About 7–10 days after a chemotherapy treatment the
neutrophil – or white cell – count is at its lowest. From
then on the bone marrow recovers and starts making
normal cells and neutrophils again.
46
How can I avoid infection
))
Follow any advice you are given by the hospital.
))
Wash your hands and keep your body clean.
))
Avoid crowded places if people are coughing or
sneezing near you.
))
It’s OK to go to school or college as long as other
students don’t have chickenpox, measles, bad colds
or the norovirus (a tummy bug).
))
Take care with some foods – see page 47.
))
Avoid skin and nail-bed infections by keeping your body
clean and by treating any cuts or grazes.
))
Look after your mouth – brush your teeth after
every meal.

Infection from food
))
Make sure any takeaway meals are well cooked and
not reheated.
))
Meat and fish should be well done.
))
Avoid raw or soft-boiled eggs, and also runny cheese.
))
Don’t eat soft-whip ice cream from machines.
Infection from skin
))
Avoid sports where you are likely to get injured.
))
Keep an eye on cuts and grazes; tell someone if they
are sore or red.
))
Avoid swimming pools if you have a low white cell
count, or have a central or PICC line.
))
If you have pierced ears (or piercings anywhere else)
take care to keep the holes clean.
))
Don’t have any new body piercings or tattoos done.
47

Body hygiene
))
Have a bath or shower every day – wash and dry extra
well under your arms and between your legs.
))
Wipe your bottom from front to back.
))
If you have diarrhoea, wash your bottom carefully after
going to the toilet.
))
Wash your hands thoroughly after going to the toilet.
))
Use pads rather than tampons if your period comes
when your white cell count is low.
))
Don’t shave if your white cell count is low.
Mouth care
))
Use the mouthwashes you are given; if you feel a sore
or mouth ulcer, tell a doctor or nurse.
))
Lipsalve can help prevent cracked lips.
))
Use a small-headed, soft nylon toothbrush to clean
your teeth and mouth gently after meals and at night.
))
Go to the dentist for a check-up before treatment if
possible. Tell them you are going to have treatment
for lymphoma.
))
You may be advised to stop wearing a brace during
treatment.
))
If you keep wearing a brace, clean it carefully after
all meals.
))
Avoid spicy or salty foods – they can make your
mouth worse.
They gave me lots of mouthwashes.
Use them – otherwise you’ll be sorry. I
didn’t bother to start with and my mouth
got really sore.
48

What should I do if I have a mouth infection
Some combinations of chemo drugs can cause a sore
mouth and mouth infections known as mucositis.
Radiotherapy given to the head and neck area can also
cause this.
You might also get mouth ulcers, which could make it
painful to eat and drink. Sometimes you might have a
stomach ache and an upset tummy. This usually only
lasts a few days. Tell your key worker if this happens and
follow all the mouth-care tips.
TOP TIPS for mouth care
))
follow instructions given about mouth care by the
medical team
))
use the mouthwashes you are given
))
use a soft nylon toothbrush to clean your teeth
gently after meals
))
tell someone if your mouth is sore
49

What should I do if I feel unwell
However careful you are, you may catch an infection. You
can catch an infection from other people. There are also
germs in some foods and in the environment.
Most infections come from germs that normally live in
your body. These bugs don’t cause a problem when you
are well, but they can get out of control if your blood
counts are low.
!
It is really important to tell someone
straightaway:
))
if your temperature goes above 38°C
))
if you feel like you have a fever, or if you
are shivery
))
if you have a cough
))
if it hurts when you wee or poo
))
if you have diarrhoea
))
if you have a red area around a sore or
your central line
))
if you just feel rough and can’t explain why.
Phone your team at the hospital or get
someone to phone for you.
IMPORTANT
Don’t use any drugs to bring down your temperature
(until a doctor, who knows you have lymphoma, tells
you to).
Don’t take aspirin or ibuprofen in any form (they can
cause bleeding when your platelet count is low).
50

Feeling sick
They told me I would be sick, but I
wasn’t – I felt fine most of the time.
Nausea is feeling sick. Vomiting is being sick.
Will I be sick
Chemotherapy can make people feel and be sick.
This doesn’t happen to everyone. Radiotherapy to the
abdomen can also make you feel sick.
Will I feel sick all the time
Nausea doesn’t usually last more than 12–24 hours if you
get it at all.
Can anything be done
Yes. There are a lot of very good anti-sickness pills and
injections. Remember to tell your doctor or nurse if you
felt sick last time. If one anti-sickness drug doesn’t work
for you, you can ask for a different type which might work
better for you.
What can I do to help
Try some of the hints other young people have
suggested. See the top tips on page 52 – some may work
for you.
Don’t try to stop yourself being sick
– you’ll feel better afterwards.
51

TOP TIPS for nausea
))
keep drinking water even if you feel sick; if you
don’t you may feel even worse
))
suck ice cubes
))
drink fizzy water, or ginger beer (but not if your
mouth is sore)
))
foods with ginger in them may help
))
eat small amounts often
))
eat slowly and don’t watch other people eating
))
keep away from cooking smells
))
wear travel sickness wristbands
))
distract yourself with music or computer games
))
suck a sweet if you get a strange taste when a
drug treatment is given
Digestion problems
Chemotherapy and radiotherapy may affect your
digestion. You may get diarrhoea or constipation. These
are important symptoms so please tell your nurse and
doctor.
Why am I constipated
It may be a side effect of one of your chemo drugs.
Certain painkillers and anti-sickness drugs can also make
it difficult to go. You may be eating and drinking less
than usual. You may be eating three times as much as
you normally do (a side effect of the steroids) and not
going enough! You may be less active. You may have had
radiotherapy to the abdomen.
52

What can I do about it
Try the top tips below.
TOP TIPS for constipation
))
don’t strain while trying to poo
))
make sure you drink plenty of water every day
))
tell a nurse or doctor sooner rather than later
))
eat more high-fibre foods such as bran flakes, fresh
fruit and veg, baked beans and dried fruits
))
try to be as active as you feel you can
))
try a warm drink
Don’t feel embarrassed to tell
someone if you have diarrhoea or constipation.
All the nurses understand – they’ve seen it
all before.
53

Why have I got diarrhoea
You may have a gut infection because your neutrophil
count is low. Or maybe the cells that line your gut are
affected by chemotherapy. Radiotherapy to the abdomen
can also give you diarrhoea.
What can I do about it
Tell a nurse or doctor. If the diarrhoea is caused by
infection it can be treated with antibiotics. Try the top tips
below.
TOP TIPS for diarrhoea
))
make sure you drink plenty of water
))
cut down on fresh fruit for a while
))
eat small meals often
))
avoid fried food
))
have a warm bath (not hot) if your bottom is sore
))
wash your hands extra carefully
I was told about lots of side effects of
chemo – thank God I didn’t get them all, but I
did have diarrhoea quite often.
Taste changes
Food may taste peculiar when you are on chemotherapy.
Don’t worry, your taste should return to normal.
Lots of people find ginger cake, ginger beer, curries and
hot chocolate still keep their taste.
54

Skin problems
What’s happened to my skin
Teenage years can be a difficult time for your skin
anyway. Sometimes chemo can make things worse,
causing redness, dryness and acne. Your skin should
improve when the treatment is finished.
If you have had radiotherapy your skin may be very
tender around the treated area, rather like sunburn. Skin
reactions are at their worst a few days after the end of
treatment and then start to heal. The hospital staff will
tell you how to look after your skin. They may give you
special cream.
TOP TIPS for skin care
))
follow instructions about skin care given by the
medical team
))
use creams recommended by your medical team
))
use soft cloths (no scrubs or exfoliation)
))
keep shower gel and deodorants off affected skin
))
try not to scratch
))
use lukewarm water in the shower and bath
))
use a soft towel to pat your skin dry
))
don’t use razor blades
))
avoid going outdoors in the sun and wind, or cover
up well
))
don’t go swimming because of the chlorine and
germs in the water
))
don’t go to tanning salons or use sunbeds
55

Fatigue and tiredness
Why am I so tired
Extreme tiredness or fatigue is a very common effect of
having lymphoma. You will probably feel fatigue at some
times, either because of the lymphoma itself or because
of the treatment.
Fatigue for people with cancer is not the same as normal
tiredness. Fatigue can make it feel hard to do even small
amounts of activity. The feeling is hard to describe. Don’t
be surprised if other people don’t really understand how
you feel.
Fatigue can vary from day to day and may be related to
when you have your chemo or radiotherapy treatments.
You could keep a diary so you can work out if there’s a
pattern to your good and bad days. Then you could plan to
do things when you’re likely to have more energy.
Sometimes I was done in, it took all my
effort just to get dressed.
TOP TIPS to fight fatigue
))
keep active whenever you can – doing nothing can
make you feel weak – but pace yourself
))
think of your energy as something precious –
use it on things that deserve it
))
try to take a short walk every day
))
plan to have a short rest each day
))
try to get a good night’s sleep
))
eat well
56

Fertility
What is fertility
Fertility is the ability to produce a child. In males, fertility
means having enough healthy sperm. In females, fertility
is the ability to become pregnant.
Will my fertility be affected
During treatment for lymphoma it is common to become
temporarily infertile. But you can’t assume you are infertile
during treatment. You should always use a reliable
contraceptive. If you have started menstruating, you may
find your periods stop or are irregular. You may be given
a mini-pill to stop your periods – this prevents heavy
bleeding when your platelets are low.
What about fertility in the long term
Many people who have been treated for lymphoma
have children afterwards without any problem. But
certain chemotherapy drugs are known to reduce fertility
in both sexes.
This is more likely with the high doses of chemo drugs
used in bone marrow or stem cell transplants.
The treatment I had for Hodgkin
lymphoma did not affect my being able to get
pregnant. Louise is 3 months old now, and she
is very special.
57

Radiotherapy may also affect fertility if the area under
treatment involves the reproductive areas of the body
(such as the testicles and the ovaries).
Your treatment will be planned to minimise risks to your
fertility. This will be discussed with you before treatment
starts. If not, be sure to ask.
Unfortunately no one can be sure exactly what will
happen to you, and no one can guarantee that your fertility
will not be affected, or that your fertility isn’t already
affected before treatment starts for some other reason.
What can be done
Sperm can be collected before starting treatment. They
are frozen and can be used up to 10 years later.
Storing eggs is more difficult. It is possible, but is not
commonly offered by the NHS.
58

Collecting eggs takes time and can only be done at
certain times – this could lead to a delay in starting your
treatment. There are organisations that can provide
information about fertility.
When is it safe to have a baby
Whether you are male or female, you will probably be
recommended to wait for 18–24 months after treatment
ends before trying for a baby. One reason is to give your
body time to recover from treatment; another is to make
sure that you are clear of lymphoma. Talk to your medical
team if you want to try for a baby.
59

Living with it
Going home from hospital
Just as hospital can seem weird and like another world,
so can the thought of going home.
Even if you haven’t been in hospital very long, you will
have got used to the people and the surroundings. You
may have been counting the days, hours and minutes
till you can leave, and then feel scared when it actually
comes to it.
Try not to worry – just as you got used to being in
hospital, you will get used to being at home again.
Eating well
Eating well will allow your body to develop new healthy
cells. Some foods you used to like may not taste so good
any more, but your taste should return to normal when
the treatment is over.
What should I eat
Try to follow a well-balanced diet with plenty of protein,
carbohydrates (carbs), vitamins, minerals and fibre.
61

Avoid certain foods when your blood count is low.
t See Infection from food on page 47
If one of your drugs is a steroid, you may have a good
appetite anyway. But try not to have a lot of sweet food
and sugary drinks because steroids can cause high blood
sugar levels.
TOP TIPS for eating
))
if you feel hungry, eat – don’t feel you have to wait
for mealtimes
))
on the days when you have a good appetite, eat
extra
))
if you are in hospital, ask visitors to bring in your
favourite foods
))
hot chocolate, smoothies or milk shakes are good
for times when you don’t feel like solid food
62

Alcohol and recreational
drugs
What if I drink or do drugs
Alcohol and recreational drugs are broken down and
processed by the liver and kidneys. They already have
plenty of hard work to do processing your chemotherapy
drugs.
Think twice before getting drunk or taking drugs. These
will give your body extra work.
What about smoking
There is no doubt about it, smoking is unhealthy. If you
are a smoker, now is the time to break the habit – your
body has enough to cope with.
Exercise
Keeping active is one of the best ways to help you to feel
better.
How much should I exercise
Lymphoma and its treatment affect different people
in different ways. It is good to go for a walk every day.
Gentle daily exercise is better for you than sudden bursts
of activity. When you are on treatment, your energy levels
will vary according to your treatment regimen.
63

What about working out at the gym
Ask a physiotherapist (physio) to recommend some
exercises to do in the gym.
Don’t do power-lifting or heavy weights if your chemo
included anthracyclines. Anthracyclines are a group of
very powerful chemotherapy drugs; you may well have
had one of them as part of your treatment. These can
affect the strength of your heart. Ask your doctor whether
this applies to you.
Can I still play sport
You are likely to have a lower white cell count than
normal. This means you are at more risk of getting
infections. If your platelet count is low, you will bleed and
bruise easily. Sports where you are likely to get injured are
not a good idea.
If you want to take part in energetic sports such as
football, rugby or mountain biking, you should ask your
medical team for advice.
TOP TIPS for exercise
))
go for a walk when you feel able to
))
don’t play sports where you are likely to get injured
))
ask your medical team before swimming
))
ask your hospital team before taking part in contact
sport
))
if you do get a cut, take extra care to clean it, and
watch for it getting inflamed
))
speak to your physio or nurse about local exercise
programmes
64

Can I swim
The warm, damp conditions in swimming pools make
them a very good place for bacteria to breed. You should
ask for advice from your medical team. They will be able
to say whether you have enough white cells to fight
infection. You may be advised not to go swimming if you
have a central line.
Feelings
Everyone is different, and your feelings are unlikely to
be exactly the same as other people’s. There is no right
or wrong way to feel. Having said that, there are certain
common feelings which we will look at later. Also, your
feelings are likely to change over time, and you will
probably have good days and bad days.
When you are first told you have lymphoma you may
be shocked or numb – as though it’s all happening to
someone else. You may need time to take it in and
accept your illness.
Why am I so emotional now
You may find you have very strong feelings that you aren’t
used to. This is normal – you are coming to terms with
having lymphoma. Also, chemo and radiotherapy can
directly affect your mood. Steroids in particular can cause
big emotional swings and make you very moody.
It is natural to feel shocked, angry, sad, lonely, frightened,
depressed or lacking in confidence.
65

Sometimes you may feel positive; on these days, make
the most of it. In the longer term, some young people
who have lymphoma find that they now have a stronger
sense of what really matters to them in life.
There will also be times when you don’t feel positive, and
that is OK too. You may need to allow yourself to feel
sadness, anger or fear.
What’s happened to my confidence
During treatment, you will be told lots of things you
have to do. This can take away your normal sense of
independence and confidence.
Try focusing on what you can control. You could decide
to find out more about lymphoma and your treatment.
Or you could decide not to. Either way, you have taken
control.
Losing your hair, losing or gaining weight, and other
changes in how you look may make you feel less
confident.
If you’re worried about going out, take things slowly. To
start with, ask people round to your place. Then go out
with friends you can rely on – get them to come to your
place first, rather than meeting up somewhere else.
66

TOP TIPS to manage your feelings
))
you know best how you feel and what will help you
through
))
talk – you may find sharing how you feel is helpful.
Contact the Lymphoma Association helpline to find
a possible buddy, or for information about the online
forums on our website
))
join in discussions with other people with
lymphoma on Twitter and Facebook
))
do things that you like – watch a favourite TV show,
listen to music, play computer games
))
try not to get stuck in your own room – a change of
scene can really help
))
don’t take on too much; try to do things in easy
steps
))
try to meet your friends or workmates, even just for
a little while, say at lunchtime
))
remember that mood swings are normal
))
if you are tense, try to find a good way to release it
))
try not to get too tired – it can make you more
emotional
))
exercise might help – it releases endorphins (the
feel-good hormones)
Talk to people, especially your family
and friends, ‘cos sometimes you’re being
strong for them, but it’s better to tell them
how you actually feel.
67

Am I depressed
If you are feeling very sad and low most of the time,
and you or other people can’t lift you out of your gloom,
you may be depressed. Other signs of depression are
not being able to sleep night after night, not wanting to
look after your appearance and feeling that everything is
hopeless.
If you think you may be depressed, talk to someone you
trust – perhaps to your key worker or doctor. Sometimes
it may be helpful to have counselling, as depression is not
something you can get over by yourself.
Relationships
Friends
When I didn’t feel like going out, I’d
ask friends round to watch films or play
computer games – that way I didn’t feel I
was missing out on everything.
Your friends probably know nothing about lymphoma.
They won’t know how you feel or what has happened to
you. How much you tell them about lymphoma is your
choice. You can send text messages. You may find this a
good way to give people your news to start with.
68

I texted my friends, I knew I couldn’t
say it on the phone to them, because
they’d just say ‘What What did you say’
I knew I couldn’t repeat it so I texted it and
they texted me back, and by the next day
everyone in my year at school knew.
You may look different; you may have lost or gained
weight. If you have had chemo, your hair will almost
certainly be different. Sometimes friends or workmates
are awkward or embarrassed.
Often you will need to make the first move and explain
things. If you talk to them first and answer their questions,
they will realise that you are still you. Tell them what is
helpful and what is unhelpful.
69

Get your friends to talk about normal stuff. You don’t have
to talk about having cancer all the time.
When you are used to your treatment pattern, you will
have a good idea of which days are likely to be good and
bad. Plan to do things with friends on the good days.
Friendships can change when you are ill. You might find
that some people are more supportive and understanding
than others.
Sometimes you feel really fed up
because friends are avoiding you. But
it’s hard for them too – they don’t know
what to say, and there’s nothing they
can do.
70

Parents
I’d like to talk to my parents but they seem so
worried already. What should I do
It is quite common to feel you have to protect your mum
or dad because it is hard to see them upset.
Try talking to your key worker if this is stopping you telling
your parents if you feel unwell, or about your hopes and
fears.
Extra support can be offered to your mum or dad, so they
won’t feel so worried and you won’t have to hide how you
feel from them.
Why are my parents trying to run my whole life
They weren’t like this before.
It is common for parents to be more protective and
controlling than before. It may help to remember that this
is because they are worried and they care about you.
When you are home they feel extra responsibility for
making sure you continue to get better.
Try talking to them when you are not feeling angry. Say
what you don’t like, and try to agree some rules together.
How can I stop my mum driving me mad –
she keeps doing everything for me
In a quiet moment you could try to work out a deal.
Something like, “I agree to ask for help if I need it. You
agree to let me do things by myself.”
71

My parents are trying to stop me going out with
friends – what should I do
You could try agreeing ground rules, such as: “You agree
to let me go out with friends as normal. I agree to stay in
if I feel tired or unwell.”
If this doesn’t work you could ask someone outside the
family to help – perhaps a family friend or your community
liaison nurse.
Remember that if your white cell count is low, you should
avoid places like clubs, cinemas, crowded shops, buses
and trains.
If you were living in your own place, but are now back
with your family, things can seem especially tough. Just
when you’d got your independence you’ve had to give it
up. Bear in mind, though, that this can work both ways
as your family may be finding it hard to readjust to you
as well.
72

Brothers and sisters
Your illness may affect how you get on with your brothers
and sisters. You may find they are irritating if you are
having an off day, and you may snap at them. Perhaps
next day when you are feeling better you could say you’re
sorry and explain that sometimes you feel ill and that
makes you cross.
They may be jealous, seeing only the extra attention you
have been getting. Perhaps you will feel jealous of them.
They may be playing sport or going out when you’re still
finding it an effort to climb stairs.
Your sisters and brothers may also be worried that
they might get lymphoma as well. If you think they are
struggling with this, or anything else, tell you parents or
your key worker. There is information available to help
them, and sometimes support days are organised.
Try explaining how you feel – they may surprise you with
their support.
Partner
If you have a partner this could be a tough time for
you both. It can be hard to know how to ‘be normal’.
Your partner may well feel helpless and useless. Some
relationships carry on, but some break up under the strain.
Try being honest with each other – don’t assume that
your partner will know how you’re feeling.
If you have started having sex, please read the next
section carefully.
73

TOP TIPS for relationships
))
share your feelings with people when you feel ready
))
remember those who are close to you will also be
going through a hard time
))
let people do things for you; it will help you and
them if they can be useful
))
make time for the things you normally enjoy
Sexual relationships
Can I have sex during treatment
There’s no reason why you shouldn’t have sex if you
feel like it, but take care if your platelets are low, as you
could bruise easily. You may want to use a water-based
lubricant if vaginal dryness is a problem. You or your
partner should use a condom. This will give protection
against infection as well as pregnancy.
Why have I gone off sex
If you are less interested in sex than usual, try not to
worry. Your sex life may be affected by your feelings,
by changes in your body, such as weight change or hair
loss, and by fatigue and other treatment side effects. Sex
should return to normal once you are over your treatment.
My hair fell out, and then the
steroids made me fat. I hated looking in
the mirror. But my boyfriend stuck by
me; he helped me through it all.
74

What can we do instead
Sex isn’t only about intercourse. If you don’t feel like
intercourse, talk to your partner about what you would like.
Try not to give up touching. Stroking and hugs can help to
keep you close until you feel more like sex again.
Will I be infertile during treatment
Although you may be infertile at some point during
treatment, you can’t assume you are. Always use a reliable
contraceptive.
t See Fertility on page 57
Should I avoid getting pregnant during treatment
Some chemo drugs can damage eggs and sperm, which
can mean that a baby does not develop normally. It’s
important to use effective contraception if you are sexually
active, whether you are male or female. If you think you
are pregnant during treatment, talk to a doctor or nurse
straightaway.
I think I have made someone pregnant. What
should I do
If you make someone pregnant during treatment, tell them
to talk to a doctor or nurse straightaway.
!
Should I stop taking the pill
If you are taking the contraceptive pill, you
may need to stop taking it and use a different
type of contraception. If no one has talked to
you about this, please ask. If you stay on the
pill, remember that vomiting or diarrhoea can
make it less effective.
75

When should I use a condom
Using a condom protects both the wearer and their partner
from infection, as well as being a contraceptive. Use a
condom during the whole treatment period, even if you (or
your girlfriend) are taking the pill. Traces of chemo remain
in the body for a few days after treatment. Avoid oral sex
for 5 days after a chemo treatment.
Where can I find out more
If you would like more information, you might find a
booklet called Relationships, sex and fertility for young
people affected by cancer helpful. This is written by
Macmillan. They also have similar information on their
website for teenagers.
See Getting more help section on page 91 u
School, college and work
Although everyone reacts to treatment in their own way,
it is common to feel very tired when you are being treated
for lymphoma.
You may really want to keep up with your studies, and it is
a good thing to try to keep your life as ‘normal’ as possible.
But you may have to take time off for treatment.
Can I get extra help
If you are under 16 and have to take more than 15 school
days off sick, you will be able to get help from the local
76

education authority. This could involve hospital teaching
or home tutoring. Your hospital team will advise you
about this.
Most units will have a hospital school and schoolteachers
who are used to helping people with their studies during
treatment. The teachers will come and talk things over
with you, or your key worker will help with this.
If you are at college your team will also discuss how your
treatment will affect your studies.
You may be able to go to school or college some of the
time and you will be helped and encouraged to do this
when you are well enough.
Your doctor will need to provide your school or college
with a letter about your illness. This is usually written by
your hospital doctor.
Do I have to tell my boss
If you are at work, it is probably best to tell your boss or
human resources (HR) department about your illness.
This will give you the chance to discuss how much you
tell the other people around you at work. Whatever
type of lymphoma you have, you will almost certainly
need to take time off from work during treatment. Most
employers will be flexible and sympathetic.
Everyone is different, and the amount of time you spend
off work is not predictable. If you have worries about work
issues, try talking to your doctor or to the hospital social
worker.
77

I think a lot of my friends are
wondering about what’s been going on,
but they don’t like to ask.
TOP TIPS for school, college and work
))
arrange a regular talk with a teacher or tutor or with
your line manager about your progress
))
a nurse may be able to visit your class to explain
about lymphoma and answer any questions
))
you could take a copy of this booklet to school,
college or work to show people (contact the
Lymphoma Association helpline – 0808 808 5555 –
for extra copies)
))
talk to your line manager about making alternative
working arrangements like working from home
when you might be well enough to work but not
well enough to travel to the office
78

Afterwards
At last your treatment is over. All the tests and scans are
clear. So what now
This section covers how you might feel, what happens at
follow-up hospital visits, and longer-term medical matters.
Feelings
You may be surprised at the mix of emotions you feel
once treatment ends.
There are lots of great things at this time, such as less
time spent at the hospital, hair growing again and feeling
well enough to get out and about with friends.
But you may also feel a bit scared that your treatment is
stopping and you won’t be seen so often by your nurses
and doctors. Of course, you will see them again when you
go back to clinics for regular checks.
You may feel really low after treatment finishes. This can
be hard when everyone else expects you to be happy.
Don’t worry if this happens to you – it is really common.
79

How shall I celebrate the end of treatment
You could plan a party or a special night out with your
friends. Or do something you’ve been missing – like a day
out or a holiday.
What if I don’t want to celebrate
Of course it’s up to you, but getting through all that
treatment is a real achievement. If you don’t want a big
celebration, why not treat yourself in some other way
You could buy yourself a present – you deserve it.
Sometimes you may find you have bad days when you
feel low and worry about the lymphoma coming back.
Lots of people feel like this now and then.
If you have difficult feelings or strong emotions,
remember you are not alone. These feelings are a natural
response to the stressful times you’ve been through. If
you want to talk through any problem, you could phone
one of the helplines listed at the end of this book or visit
80

one of the websites that have been set up especially
for young people who have had cancer. The Lymphoma
Association’s Facebook page might also be worth a visit –
click on the Facebook icon on our website.
See Getting more help section on page 91 u
I try to have something to do to take
my mind off worrying. I’ve got a bit of a wild
imagination, and if I’m not careful I can let it
take over, and start imagining stupid scenarios
that may never happen.
TOP TIPS if you are worried
))
find someone to talk to – share your worries with
someone you trust
))
if you never seem to enjoy yourself, you could ask
to talk to a counsellor
))
talk to other people on forums or on Twitter or
Facebook
))
write down your worries and what can or can’t be
done about them
))
try to distract yourself by keeping active
81

I just wanted things to go back to
normal, but I found out I’m different now. It
took a while to accept that and to realise
the new me was OK .
Hospital check-ups
You will have regular follow-up visits at the hospital,
usually for at least 5 years after the end of your treatment.
It is really important to turn up for these. If the test results
are good, you can be confident you’re still in remission
and that the lymphoma has not come back. If there is a
problem, the sooner it is found the better.
What does remission mean
‘Complete remission’ means that there is no longer any
sign of lymphoma in your body. That was probably the aim
of your treatment.
You may hear doctors or nurses talk about ‘partial
remission’, or ‘good partial remission’. This means that
some or most of the lymphoma has gone, but not all of it
yet. Ask them if you want to know more.
A check-up also gives you a chance to talk about any
worries you have. It is quite common to cope pretty
well during treatment, but for emotional problems to
come up later.
82

I’ve finished my treatment, but
I still chat to Imogen and Maddy online.
We’ve got to know each other and
they’ve been through it all too.
Some people dread going back to the hospital because
they worry that a scan or a test will show that the
lymphoma is back. For some, it could be a reminder of
how tough it was during treatment.
Will the lymphoma come back
No one can be 100% certain, but after a long time in
remission, many doctors will say the lymphoma is cured.
This is usually after about 5 years.
What happens at a check-up
To start with there will be a variety of tests and scans,
similar to those you had during diagnosis and treatment.
These are to check there are no signs of lymphoma.
At later check-ups you may have different tests to see if
there are any long-term effects from your treatment.
How often will the check-ups be
At first you will probably be going for check-ups at least
once every 3 months. Then maybe every 4 or 6 months.
Eventually there will probably be one check-up a year.
83

I’m trying to forget about hospitals
and everything, and get on with my life.
I get all moody whenever an appointment
is coming up, but I always go because it’s
stupid not to.
Why do I have different check-ups from other
people
Everyone is different. The tests you have will depend on
things like the type of lymphoma you had, the way it was
treated, how your body responded and how long ago you
were diagnosed.
After cure – medical
matters
Lymphoma is part of your medical history. It is really
important that anyone treating you in future knows that
you once had lymphoma, and what the treatment was.
You will be given a card with all the important information
on it. If not, ask for one. You should carry this with you.
It’s worth making some copies in case it gets lost.
There are some things you will always need to be careful
about from now on.
84

Sun safety and travel
Why do I have to take care in the sun
You will always need to use a high-factor sun screen
because chemo permanently affects your skin, making
it unable to protect itself. If you have had radiotherapy,
you should always protect the area of skin exposed to
the X-rays.
What about sunbeds
You should not use these. The very intense rays will
damage your skin.
What about travel abroad
If you’ve had a bone marrow or stem cell transplant you
need to choose where you go carefully. If you want to
travel to places which require vaccinations, you must
ask your doctor for advice – there are some live vaccines
which you shouldn’t have, such as yellow fever, typhoid
and live oral polio vaccines.
Vaccinations
Your doctors and nurses will provide you with advice
about vaccinations during and after treatment.
After high-dose chemotherapy or a donor stem cell
transplant, your doctor will advise you to have a repeat
course of some of your childhood vaccines. This is
because the immunity that you gained from the childhood
vaccines may be lost during your treatment.
85

Live vaccines should not be given during or for 6 months
after chemotherapy or for 12 months after a stem cell
transplant. The seasonal flu vaccination is not a live
vaccine so it is usually recommended during treatment.
The spleen
What does the spleen do
The spleen is an important part of the immune system. If
it has been removed or treated with radiotherapy, you
cannot fight infection as well as you used to. You should
take penicillin every day to protect you. You will also
need to take some special precautions from now on (see
below).
You should make sure that all your medical records
clearly mention treatment of your spleen, and carry any
treatment card you may be given.
What special care should I take
Avoid areas with malaria, if possible. If you have to travel
there, take special precautions like using nets, creams
and electronic mosquito ‘zappers’, as well as taking antimalaria
tablets.
Take special care if you are bitten by a dog. You should
have the wound properly cleaned up or stitched and
take a course of antibiotics – there are lots of bacteria in
animals’ mouths.
You will be offered a course of vaccines if your spleen has
been removed or irradiated. Keep vaccinations against
pneumonia and meningitis up to date.
86

Blood transfusions
You may need to have special ‘irradiated’ blood if you have
a blood transfusion in the future. Irradiating the new blood
helps your body to accept it. It’s a good idea to know if
this applies to you – if you’re not sure, ask the hospital.
Who might need irradiated blood
You may need irradiated blood if:
))
you had Hodgkin lymphoma
))
you were treated with chemo drugs called purine
analogues
))
you had a stem cell or bone marrow transplant.
Your doctor should tell you whether this applies to you,
and for how long after treatment.
Steroids
If you were treated with steroid drugs, you may be
given a blue steroid warning card. If so, you will be told
how long you need to carry this with you – usually at least
18 months.
Why should I always have my steroid card with
me
If you become ill, or unconscious in an accident, the
steroid treatment you had in the past may prevent your
body from making enough natural steroids in response to
the situation. If medics know this, they can give you the
right treatment.
87

General anaesthetics
If you need to have a general anaesthetic in the future,
you must tell your doctor that you have had treatment
for lymphoma. Your treatment may have included a drug
called bleomycin, which can affect your breathing. The
anaesthetist will take special care. The drugs you had will
be written on your treatment card – another good reason
to keep it with you.
Anthracyclines
What are anthracyclines
Anthracyclines are a group of very strong chemotherapy
drugs, which are nearly all used in chemo for cancer. One
anthracycline often used to treat lymphoma is doxorubicin
(sometimes called Adriamycin ® ). It helps get rid of your
cancer, but can affect the strength of your heart. You
should check your treatment card. Ask about this if you
are not clear.
What about working out at the gym now I’m off
treatment
If you like going to the gym, don’t include work with
heavy weights, unless your doctor has specifically given
you the all-clear to do so. Lifting weights puts abnormal
strain on your heart.
Can I go diving
You need to have a medical and be declared fit to take
up diving. If your heart has been affected diving won’t be
safe. The British Sub Aqua Club has lots of information
about being fit to dive – you could Google their website.
88

Never give up on your dreams.
I’m pregnant – will I have problems giving birth
If you have had anthracycline treatment you should tell the
maternity team looking after you. They may recommend a
heart scan, and will keep an extra eye on you during your
labour.
After cure – other matters
You may want to find out whether having had lymphoma
affects other things such as education, jobs, insurance,
travel, and staying healthy.
There is information on these and other matters for young
people who’ve had cancer.
See Getting more help section on page 91 u
Stay positive, however hard
it gets. Things will get better and
it’s amazing to finally be able to call
yourself a cancer survivor.
89

Helping others – having fun
What a lot of teenagers and young adults want more than
anything else is to talk to someone their age – people who
understand what they’re feeling like and what they are
going through.
Some hospitals recognise this, and can put you in touch
with someone who can help you, or who needs your help.
Ask the key worker at your treatment unit about this.
There may be groups run for teenagers to help support
each other and share experiences – these can be very
helpful and may include fun things like pizza nights.
The Teenage Cancer Trust runs an annual conference,
‘Find your Sense of Tumour’. It’s a chance to have a
break, meet other teenagers and have fun. There’s also an
opportunity to meet experts and ask questions.
Some organisations offer free holidays – these may
be available for several years after your treatment has
finished.
I’d say try to meet other people
who’ve had cancer, they’ve been there
and they understand. Go out with them
or have a short break when you can
and have some fun together.
90

Getting more help
Lymphoma Association
If there is anything in this booklet that you would like to
know more about, or if you just want someone to talk to,
telephone the Lymphoma Association helpline:
0808 808 5555, Monday to Thursday 9am to 6pm;
Friday 9am to 5pm.
You could email us at: information@lymphomas.org.uk
We have a website: www.lymphomas.org.uk
You can share information and feelings with other young
people who know what it’s like to have lymphoma. See
our online forums at www.lymphomas.org.uk/forum
We also have pages on social networking sites
such as Facebook.
Or you can follow us on Twitter
@LymphomaAssoc
We have films of people talking about lymphoma
on our YouTube channel.
91

Children’s Cancer and Leukaemia Group (CCLG)
coordinates clinical trials and provides information for
patients and families, including information about life
after cure.
0116 249 4460
www.cclg.org.uk
info@cclg.org.uk
CLIC Sargent (Cancer and Leukaemia In Childhood) cares
for young people with cancer and their families in hospital
and in the community.
Helpline: 0300 330 0803, Monday to Friday, 9am to 5pm
www.clicsargent.org.uk
@CLIC_Sargent
www.youtube.com/user/clicsargent
Jimmyteens.tv features teenagers and young people
who are, or have been, undergoing treatment for cancer.
They share their experiences through video diaries, short
films, music and animation.
http://www.jimmyteens.tv
@jimmyteenstv
92

Macmillan Cancer Support provides practical, medical,
emotional and financial support to people affected by
cancer. It also funds specialist nurses, doctors, and
buildings for cancer care.
0808 808 0800, Monday to Friday, 9am to 8pm
www.macmillan.org.uk/Cancerinformation/
teensandyoungadults/Infoforteensandyoungadults.
aspx
I’m Still Me is a booklet by Macmillan for young people.
www.macmillan.org.uk/Documents/Cancerinfo/
Imstillme.pdf
@macmillancancer
NHS Choices has information for people with cancer
aged 19–24 in England.
http://www.nhs.uk/young-cancer-care/pages/index.
aspx
NHS Scotland provides information as part of the
Scottish Government’s commitment to create a national
service for young people and children with cancer.
http://www.youngcancer.scot.nhs.uk/
NHS Northern Ireland provides help and support for
people living with cancer.
http://www.nidirect.gov.uk/index/informationand-services/health-and-well-being/
illnesses-and-conditions/cancer/cancer-help-andsupport.htm
93

Siblinks aims to provide a network for young people who
have or have had a family member affected by cancer
to gain support through social, practical and emotional
activities and provide information to raise awareness.
www.siblinks.org
Teenage Cancer Trust provides cancer care for
teenagers and young adults through its family support
network, funding and building of specialist wards, nursing,
conferences and research.
020 7612 0370
www.teenagecancertrust.org
email via website
National Conference page:
www.teenagecancertrust.org/get-clued-up/talk-toother-young-people/find-your-sense-of-tumour/
@TeenageCancer
Youth Cancer Trust provides free activity-based holidays
for young people (aged 14–30) who have cancer. You can
also go on a holiday if you have been in remission for up
to 5 years.
01202 763591
www.yct.org.uk
admin@yct.org.uk
@YouthCancerYCT
94

Jargon buster
allogeneic
anaemia
antibody
autologous
B symptoms
biopsy
blood count
central line
chemo
chemotherapy
cytotoxic
diaphragm
drip
erythrocyte
from a donor’s body
shortage of red blood cells in your blood
a protein that helps your immune
system to fight infection and disease
from your own body
unexplained weight loss, drenching night
sweats, high fevers
a test which takes cells from your body
to be looked at under a microscope
finds out how many blood cells of each
type are in your blood
a hollow tube inserted into a vein to give
chemo or take blood
short for chemotherapy
drug treatment with cytotoxic drugs
poisonous to cells
a sheet of muscle across the bottom of
the ribcage
the slow, drop-by-drop infusion of a
liquid
a red blood cell containing haemoglobin
and transporting oxygen
95

Groshong ®
line
haemoglobin
haematologist
Hickman ® line
intrathecally
lymph
lymph node
lymphatic
vessels
lymphocyte
lymphoid
lymphoma
lymphopenia
mucositis
nausea
neutropenia
neutropenic
neutrophil
a hollow tube inserted into a vein to give
chemo or take blood
the oxygen-carrying part of an
erythrocyte
a doctor who specialises in diseases of
the blood and blood cells
a hollow tube inserted into a vein to give
chemo or take blood
given by injection directly into the spinal
canal
clear fluid that carries lymphocytes
a gland that acts as a sieve in the
lymphatic system
tubes which carry lymph and connect
lymph nodes
a type of white blood cell that fights
infection
to do with lymph
cancer of lymphocytes
a shortage of lymphocytes in your blood
inflammation and soreness in the lining
of the mouth, throat and gut
feeling sick
a shortage of neutrophils in your blood
being short of neutrophils in your blood
a type of white blood cell – fights
infection
96

oncologist
PICC line
platelets
port
principal
treatment
centre
radiographer
radiologist
radiotherapist
radiotherapy
regimen
remission
sedation
a doctor who specialises in treating
cancer
stands for ‘peripherally inserted central
line’ – a flexible tube inserted into one of
the large veins in your arm, above your
elbow, and is used to take blood or give
chemo
the tiny fragments of cells in your blood
which help to stop bleeding
a portocath is a central line that is put
into a vein in your chest or arm and has
an opening (port) just under the skin. It
allows medicines to be given into the
vein or blood to be taken from the vein
a centre specialising in treating young
people with cancer
a person who takes X-rays or gives
radiotherapy
a doctor who interprets X-rays and scans
a doctor who specialises in radiotherapy
treatment by X-rays
a programme of treatment including
drugs, how much of each you have, and
when you have them
when lymphoma no longer shows up in
any test
medicine to make you feel sleepy
97

spleen
splenectomy
stage
staging
stem cell
steroid
teenage and
young adult
unit
thrombocytopenia
vomiting
a part of your immune system – it helps
to fight infections and clear bacteria and
old red blood cells from the body
an operation to remove your spleen
a number used to show how much
lymphoma you have and where it is
– sometimes there’s a letter as well
examination and tests that are done to
find out the stage of your lymphoma
a young blood cell that the body hasn’t
yet turned into a red cell, white cell or
platelet
a type of drug used to relieve swelling
and inflammation
an inpatient unit that provides a range of
facilities and services for treating young
people with cancer
shortage of platelets in your blood
being sick
98

Acknowledgements
This booklet is the fifth edition of a booklet that
was first published in 1999. We would like to thank
the following experts for their contributions to this
current edition:
Dr Stephen Daw, Consultant Paediatric & Adolescent
Haemato-Oncologist, Children and Young People’s Cancer
Services, University College Hospital, London
Kerry Baker, TYA Specialist Nurse, University College
Hospital, London
Amanda Bland, TYA Specialist Nurse, Royal Devon and
Exeter Foundation Trust
Dr Georgina Hall, Consultant Paediatric & Adolescent
Haematologist, Oxford Children’s Hospital, John Radcliffe
Hospital, Oxford
Julie Watson, TYA Specialist Nurse, Castle Hill Hospital,
Hull
All the young people who shared their experience with us
and provided their photographs
And for their help with previous editions:
Dr Mary Gerrard, Sheffield Children’s Hospital
Dr Annie Griffiths and the Publications Group of the
Children’s Cancer and Leukaemia Group
Chrissie Williams (freelance writer)
Kylee Shipp, Clinical Nurse Specialist, Teenage Cancer
Unit, University College Hospital, London
99

Sponsors
We are grateful to GlaxoSmithKline and to the
Edith Murphy Foundation for supporting this booklet.
Photographs
Teenage Cancer Trust, Young Oncology Unit, The Christie,
Manchester
Teenage Cancer Trust, Teenage Cancer Unit, University
College Hospital, London
Coping with Cancer Youth Group, Leicester
Andrea Tennant and Darren Bull
Illustrations
Janet Cronin and Giles Andreae
Coolabi (for permission to use the Purple Ronnie
illustrations)
References
We have used books, online information and journal
articles to put this booklet together. If you want to see a
selection of the references used, please contact us via
email (publications@lymphomas.org.uk) or ring us
on 01296 619409.
How you can help us
We would be interested in any feedback you might
have on this booklet. Please visit www.lymphomas.
org.uk/feedback or email publications@lymphomas.
org.uk if you have any comments. Alternatively please
phone our helpline on 0808 808 5555.
100

Freephone helpline 0808 808 5555
information@lymphomas.org.uk
www.lymphomas.org.uk
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Lymphoma Association
PO Box 386
Aylesbury HP20 2GA
General enquiries 01296 619400
© Lymphoma Association
Registered charity no 1068395
LYM0007YPGuideBk2013ed5
5th edition produced December 2013
Next revision due 2016
ISBN 978-0-9570044-4-3