Living with lymphoma

170 Pages·2017·1.43 MB·English

Living with lymphoma
Living with
lymphoma
About this book
If you or someone close to you has been diagnosed with
lymphoma, you are not alone: around 19,000 people are
diagnosed with lymphoma each year in the UK. It is likely
to be a challenging time for you. We’re here to give you the
information and support you need.
This booklet includes:
• i deas to help cope with diffcult feelings
• t ips to help manage symptoms and side effects
• s uggestions for handling your day-to-day life
• s ources of further information and support.
This booklet is divided into parts. You can dip in and out of it and
read only the sections relevant to you at any given time.
Lists practical tips.
Is a space for questions and notes.
@ Signposts you to other resources you might fnd relevant.
Important and summary points are set to the section
colour font.
The information in this booklet can be made
available in large print.
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Note down key contacts so that you can fnd them easily.
Health professional Name and contact details
GP
Consultant
haematologist/
oncologist
Clinical nurse specialist/
key nurse contact
Treatment centre/
clinic reception
Hospital out-of-hours
number
Hospital ward
Key worker
Support group
coordinator
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Acknowledgements
We would like to acknowledge the continued support of
our Medical Advisory Panel, Nurse Forum and other expert
advisers, as well as our Reader Panel, whose ongoing
contribution helps us in the development of our publications.
In particular we would like to thank the following experts:
• A nne Crook, Counsellor/Psychotherapist, Psycho-
oncology, The Christie NHS Foundation Trust, Manchester
• D r Nagesh Kalakonda, Reader and Honorary Consultant,
Haematology, University of Liverpool and Royal Liverpool
University Hospital
• D r Sajida Kazi, Haematology Specialty Trainee,
The University of Aberdeen
• M airéad Mulhall, Macmillan Lymphoma Clinical Nurse
Specialist, University Hospital Southampton
• D r Ruth Pettengell, Honorary Consultant & Reader
in Haematology & Medical Oncology, St George’s
University Hospitals NHS Foundation Trust, London
• B arbara Wilson, Founder and Director of Working
with Cancer.
Special thanks to our supporters for sharing their
experiences of lymphoma that feature throughout the book.
Thank you to Action for ME (Myalgic Encephalopathy) for
allowing us to adapt their fatigue diary included on page 59.
This booklet has been part-funded by Gilead Sciences Ltd
and Roche Products Ltd.
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Contents
Feelings and emotions 6
Coping with symptoms and treatment 36
Relationships, family and friends 84
Self-esteem 104
Relaxation and managing stress 110
Day-to-day living 124
Life after treatment 144
Contents
Never before have I been fooded by so many emotions yet
had no idea of what I was feeling. I look back on the day I
was told I had cancer with complete confusion. The haze
continues to be best described by Simon and Garfunkel;
essentially I was surrounded within a sound of silence,
where people were talking without speaking.
Natalia, diagnosed with Hodgkin lymphoma
6
Feelings
and emotions
Adapting to the diagnosis 8
Adaptation 14
Coping with diffcult feelings 14
Identifying worries 25
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Adapting to the diagnosis
Reactions to the news of a diagnosis of lymphoma are entirely
natural. You are likely to go through many thoughts and emotions.
We say ‘you’ to refer to anyone affected by lymphoma, whether
you are the person who has been diagnosed or you are
supporting someone else with a diagnosis.
Below are some feelings you might experience. However, there
is no right or wrong way to feel, nor any set order or timescale in
which to experience emotions – everyone is different.
Shock and disbelief
There is a lot to take in with a diagnosis of lymphoma. You might
feel shocked or numb when you frst hear the news – especially
if you were having tests for something else when the lymphoma
was found. At frst, you might be in denial, thinking that this can’t
really be happening or that the doctors have made a mistake. You
might need to go over the news several times before it sinks in.
Lymphoma can mean having to make several adjustments to your
life, which may in turn mean coming to terms with the fact that your
life has turned out differently to what you had planned.
Anger
Lymphoma can throw you into an unfamiliar world of medical
information and terminology, hospital visits and treatments.
Not knowing the cause of the lymphoma can bring confusion and
anger. You might be angry about the disruption to your life and
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future plans. You may feel angry with the cancer itself, with the
health professionals who found it, or with those close to you.
If you are on ‘watch and wait’ (active monitoring), you might feel
angry and frustrated that no one is treating your lymphoma. You
might feel jealous or angry towards people who seem to carry
on with their lives. Some people describe being ‘angry at the
world’ as they struggle with the unexpectedness and perceived
unfairness of their situation.
Sometimes anger masks fear and anxiety (see below).
Read more about ‘watch and wait’ (active monitoring)
@
at www.lymphomas.org.uk/active-monitor.
Fear and anxiety
There is a difference between fear and anxiety. With fear, the
thing you feel frightened of is specifc. For example, you might be
scared of having treatment.
Anxiety causes a sense of unease that can be overwhelming and
vague – it happens when you feel threatened or under stress but
fnd it hard to connect it to anything in particular.
You might feel anxious often, for example, while you are waiting for
treatment and test results or if you are on ‘watch and wait’ (active
monitoring). Your anxiety may also be triggered by programs or
advertisements on television or radio, or by articles in newspapers
that somehow relate to lymphoma or illness in general.
Feelings and emotions
Anxiety often arises at the time of diagnosis and when treatment
is discussed. Usually, it fades once treatment starts.
Common signs of anxiety include:
• b eing tired but unable to sleep
• f eeling worried or irritable
• d iffculty concentrating and inability to carry out
day-to-day tasks
• m uscle tension
• r acing heart or palpitations (futtering or pounding heart)
• d izziness
• q uick breathing.
Find tips on coping with anxiety later in this chapter. Let a
member of your medical team know if this impacts on your
day-to-day life, so that they can support you.
‘If only’ thoughts
Life with lymphoma is full of uncertainty, which often goes hand-
in-hand with anxiety. Some people have ‘if only’ thoughts, for
example, ‘if only I’d gone to the doctor sooner, I would not be
in this situation’. These thoughts can happen when you try to
take control over a situation that is, ultimately, beyond anyone’s
control. Diffcult as it may be, you may need to learn to cope with
uncertainty.
Depression, sadness and loss
Lymphoma can bring multiple losses. You might feel a sense of
loss for your life as it was before the illness. You might feel sad
that you have to reconsider your plans. You might worry that
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