My Guide to

Blood Cancer
Taku Aratohu ki te
Mate Pukupuku Toto
Kia ora
This booklet has been written specifically to help you My treatment Life with cancer
as an adolescent or young person (AYA) to navigate How will my blood cancer be treated? .......20 Feelings ................................................54
your blood cancer or blood condition diagnosis, Will I have to stay in hospital? ..................20 Relationships .........................................59
Which hospital will I be treated at? ........... 22 Living situations .................................... 61
treatment, recovery, and all the life stuff that goes Travel and accommodation support .........23 Work and education ...............................63
along with it. Informed consent ...................................23
Being told you have a blood cancer or blood condition can come as a huge shock. Making treatment decisions ..................... 25 Beyond cancer
In between the busyness of life, study and/or work, big health changes are not What is chemotherapy? ..........................26 Finding a new normal..............................70
usually something most young people are thinking about. Life may look different for What are steroids?..................................29 Relationships with family/whānau
a while, but there is support available to make it as easy as possible. What is radiotherapy? .............................29 and friends ............................................70
You can read this booklet from start to finish, or you can refer to the contents Immunotherapy and targeted therapies ....29 Dating .................................................. 72
to find the sections that are useful to you right now. What is a stem cell transplant? ................ 31 Fatigue after treatment .......................... 73
Complementary therapies ....................... 32 Late effects ........................................... 73
Your family/whānau and friends might also find it helpful to read this booklet,
to understand some of what you may experience. Keeping yourself healthy.......................... 74
Understanding side effects Immunisations ....................................... 76
It is not the intention of this booklet to recommend any particular form of
treatment to you. There also may be sections of this booklet that aren’t relevant How will I be affected? ............................36 What about travelling?............................ 77
to your diagnosis or treatment. Reduced immunity.................................. 37 Fear of relapse ....................................... 77
Anaemia ...............................................39 If cancer returns..................................... 78
This booklet is available in hard copy or you can download the PDF on the Leukaemia
& Blood Cancer New Zealand (LBC) website at www.leukaemia.org.nz. The website Bleeding and bruising .............................39 If treatment doesn’t work ........................ 78
also has different fact sheets and booklets with more detailed information. Body image ...........................................39
Hair loss (alopecia).................................40 Appendices
Skin and nails......................................... 41 Questions and tips for your

Contents
Weight loss ............................................ 41 hospital appointments ....................... 82-83
Weight gain ...........................................42 Useful websites and resources ..................83
Bowel changes .......................................42 Glossary of terms ...................................84
My diagnosis Difficulty concentrating or remembering Acknowledgements ................................ 87
Bone marrow, blood stem cells and blood .......................................................... 6 (chemo brain)........................................43 Leukaemia & Blood Cancer
The lymphatic system ..................................................................................... 8 Fatigue ................................................ 44 New Zealand ......................................... 87
What is a blood cancer? .................................................................................. 9 Nausea and vomiting............................. 44
Types of blood cancers and conditions ............................................................... 9 Nutrition and diet...................................45
Why did I get a blood cancer? ......................................................................... 10 Sore mouth (mucositis) ...........................46
What happens after I’ve been told I have a blood cancer or condition? ................. 10 Sexual well-being ...................................47
Tests and investigations ..................................................................................11 Menstruation .........................................48
Fertility and cancer treatment .................49
What health care professionals will I meet along the way? .................................. 15
 My diagnosis

My diagnosis My diagnosis is:

My treatment centre is:

Taku tautohu My treatment is called:

The word diagnosis means the process of identifying My consultant is:

a disease or condition. By now you would have had
many different tests and investigations, which Phone number:
helped the doctors identify that you have a blood
cancer or condition. My AYA keyworker is:

Ask your doctor or nurse to help you fill in the details

My LBC Support
on the next page so you have quick access to their Services Coordinator is:
names and contact information.
Phone number:

“ When I got my first

diagnosis my partner
asked the doctor,
“Who does Kate talk to if
she has any questions, this
is a lot to take in” and we
got the phone numbers of
who to contact if we needed.
That was invaluable as over
the next days I had some
“
complications and was
able to get help.

Kate
4 5
 My diagnosis

Bone marrow, blood stem cells

Myeloid and lymphoid stem cells create the blood cells for your body, including white
and blood cells blood cells, red blood cells and platelets. In Figure 02 you can see that the blood stem
cell has divided to create a myeloid stem cell and a lymphoid stem cell.
To understand what is happening in your body, it is helpful to
know a bit about blood and blood cells. Blood stem cell
Figure

Bone marrow
Bone marrow is the spongy material inside your bones (see Figure 01). All your blood cells
02 Myeloid stem cell Lymphoid stem cell
are made in your bone marrow – this is called haematopoiesis (he-ma-toe-po-ee-sis).
There are three main types of blood cells: red blood cells, white blood cells and platelets. The cells created
from blood stem
cells
New blood cells forming
Myeloid blast cell Lymphoid blast cell
Figure

01 Bone

Bone marrow

Red cell Platelet White cell T-lymphocyte B-lymphocyte

Bone
marrow

Your blood
Blood is made up of plasma, red blood cells, white blood cells and platelets.

!
You might like to think of the bone Plasma
Plasma is the light-yellow coloured fluid that carries blood cells around your body.
marrow as the blood cell factory.
The main workers of the factory Red blood cells
are the blood stem cells. Red blood cells contain haemoglobin (heem-a-glow-bin), which moves oxygen from the
lungs to all parts of the body. Haemoglobin also carries carbon dioxide to the lungs where
it is breathed out. A low level of haemoglobin in your body is called anaemia (a-nee-
me-a). Symptoms of anaemia are explained further on page 39.
Blood stem cells
Blood stem cells are found in the bone marrow and create the new blood cells in White blood cells
your body. White blood cells fight infection. For example, if bacteria enter your bloodstream through
a cut, the white blood cells attack and kill the bacteria cells before they divide and
The job of blood stem cells is to:
spread. If your white blood cell count is low, you are more at risk of getting an infection.
• Make exact copies of themselves Neutrophils (new-tra-fills) are a type of white blood cell that act as your system’s first line
• Divide and make two different cell groups: myeloid (my-ill-oid) stem cells and of defence and kill bacteria and fungi. Neutropenic (new-tra-pee-nik) is the term used to
lymphoid (lim-foid) stem cells. describe a low number of neutrophils in your blood.

6 7
 My diagnosis

The lymphatic system

The lymphatic system is made up of a large network of tubes
(like blood vessels) that branch out into all the tissues of the body
What is a blood cancer?
(see Figure 03). Cancer of the blood occurs when one of the types of blood cells, which are produced
in your bone marrow, grow in an uncontrolled or abnormal way. The type of blood
These tubes contain lymph, a colourless watery fluid that carries lymphocytes
cancer you have depends on the type of cell, and the stage of development the cell had
(lim-fo-sites), which are specialised white blood cells that fight infection. There are
reached when the abnormal change occurred.
three types of lymphocytes: B-cells, T-cells and natural killer (NK) cells. These cells
protect us by making antibodies and destroying harmful bugs such as bacteria and When something is wrong with your blood, it can affect your overall health, and if left
viruses. The lymphatic system forms part of the immune system, which protects our untreated symptoms can get worse.
bodies against disease and infection. A haematologist is a specialist doctor who treats blood-related cancers and conditions.
There is more detailed information on page 15 about the different doctors and health
Clusters of small bean-shaped care professionals you may meet.
organs called lymph nodes (or lymph
glands) are found throughout the
lymphatic system. The lymph nodes
are filled with lymphocytes and act as Cervical
lymph
Types of blood cancers and conditions
important filtering stations, cleaning nodes

the lymph fluid as it passes through Thymus There are many different types of blood cancers and blood conditions. Common blood
Axillary
them. Bacteria, viruses and other lymph cancers include leukaemia, lymphoma and myeloma.
nodes
harmful substances are removed
and destroyed. Blood cancers that most commonly affect adolescent and young adults (AYA) are:
Spleen • Acute lymphoblastic leukaemia (ALL)
When you have an infection (like
a sore throat) you may notice that • Acute myeloid leukaemia (AML)
the lymph nodes around your neck • Hodgkin lymphoma (HL)
become swollen and sore. This is • Non-Hodgkin lymphoma (NHL).
because the lymphocytes that live
Inguinal
there become activated and multiply lymph
nodes

!
in response to the virus or bacteria More
causing the infection. information
The spleen (an organ on the left side is available online
of the abdomen), thymus (a gland
found behind the breastbone), tonsils Bone Lymph
vessel
marrow
and adenoids (glands in the throat)
and bone marrow (spongy material
inside bones) all contain lymphatic
Popliteal
lymph You’ll find a
tissue and are therefore considered
nodes
glossary of
to be part of the lymphatic system. terms at the
Lymphatic tissue is also found in back of this
the stomach, gut and skin. Figure booklet if you

03
need help along
the way.

The lymphatic
8 system 9
 My diagnosis

In leukaemias, the abnormal cells are usually only found in the bone marrow and blood.
In lymphomas, the abnormal cells are found in the lymphatic tissues (also known as lymph
nodes or glands) but in some people the bone marrow can also become involved.
There are also a number of other blood cancers or blood conditions which are not
leukaemias or lymphomas. Some of these include: Tests and investigations
• Aplastic anaemia
• Myelodysplastic syndromes Your doctor will confirm what type of blood cancer or condition you have after doing
a variety of tests and investigations. Your blood tests get sent to a laboratory where
• Myeloproliferative disorders
specialised doctors will examine the sample under a microscope. You may also have a
• Sickle cell disease. biopsy of a lump, lymph node or bone marrow.
More
information They will also talk with you and ask you questions about how you’ve been feeling, any
Why did I get a is available online symptoms you’ve noticed and how it has been impacting your life.

blood cancer? Blood cancers and conditions affect everyone differently, so the types of tests you have
may be different to what someone else has. You may need a few different tests before you
are given a diagnosis, and to work out a treatment plan.
Usually the cause of blood cancers or blood conditions is unknown. It is important to know
that it is not your fault, and you did not do anything wrong. Physical examination and medical history
Some important things to remember are: Your doctor will look and feel for any swelling of the glands in your neck, armpits and
groin. They will also check your abdomen (tummy) and chest for any signs of swelling or
• You cannot catch blood cancers from other people, and you won’t pass it on to those
fluid collection. Your doctor will also ask you about any other symptoms you might have,
around you.
such as weight loss, sweating, bleeding or pain.
• There is no evidence that blood cancers can be caused by anything you eat or drink.
Your doctor will ask you about your past medical history, including any previous illnesses,
• Most blood cancers are not hereditary (passed on from your parents or to your children).
health problems or bleeding. They will also need to know about any prescribed or over-
the-counter medications or drugs you take regularly.

What happens after I’ve been told Lymph node biopsy

I have a blood cancer or condition? A lymph node biopsy is a procedure where all or part of a lymph node is removed and
sent to be examined in the laboratory. It can take at least a few days for the sample to be
You are likely going to experience a range of feelings and emotions after being told tested and for the results to come through.
you have a blood cancer or condition. These feelings may include shock, anger,
sadness, denial and worry. It is normal to have a range of emotions. Over time, you Blood test
will find ways to adapt and gradually adjust to a new sense of normal.
Full blood count (FBC)
It can also feel like an overwhelming time with more appointments, meeting new An FBC (or complete blood count [CBC]) measures the number and appearance of red
health professionals and having more tests and investigations. You may need other blood cells, white blood cells and platelets.
tests to help show more about what’s going on. These tests may include:
Blood chemistry test
• Bone marrow biopsy Blood chemistry tests measure the amounts of different chemicals in your blood. They
• Lumbar puncture provide important information on how well your organs and body systems are working,
• Genetic testing (done from blood or bone marrow samples) e.g. your liver and kidneys. This provides a baseline for your disease and general health,
• Imaging tests (e.g. X-ray, ultrasound, CT scan, MRI scan) which can be compared to later results to see how you are progressing.
The results of these tests will be really important when your doctor discusses your
treatment options. There may also be a few practical things to sort out, such as
getting a central line put in (see page 27).

10 11
 My diagnosis

Other tests
• You may be tested for common viruses, or viruses that can affect your treatment such as
hepatitis B, hepatitis C, Epstein-Barr virus (EBV) and human immunodeficiency virus (HIV).
Bone marrow biopsy
• Your antibody levels may also be tested as low levels may mean you are more likely to A bone marrow biopsy is a test where a doctor takes samples of your bone marrow and
get infections. sends them to a laboratory to be looked at under a microscope. A bone marrow sample is
• You might have other tests that are specific to your diagnosis. usually taken from the back of your hip bone (iliac crest) (see Figure 05).
A bone marrow biopsy can be done when you are staying overnight in hospital or as an
Scans and imaging outpatient (you visit the hospital for the procedure).
Many people require X-rays or other imaging tests for diagnosis or monitoring.
These might include: Your doctor will probably give you a drug that makes you feel relaxed and sleepy (a sedative)
before the biopsy starts. You may also be given pain relief. Your doctor will give you a local
• Chest X-ray – To detect a chest infection or any other abnormalities. anaesthetic, which is a small injection that is put into your skin where the biopsy is going
• Electrocardiogram (ECG) and echocardiogram (ECHO) – To see how well your heart is to be done, to make the area numb so you don’t feel anything. Sometimes a bone marrow
working. biopsy is done under general anaesthetic (where you are put to sleep) instead.
• Computer-assisted tomography (CT or CAT) scan or ultrasound – May be used if there To do a bone marrow biopsy, your doctor inserts a needle through your numbed skin into
is concern about specific localised involvement or damage caused by the lymphoma. the bone and then into the bone marrow. Bone marrow has liquid and solid parts. A small
• Magnetic resonance imaging (MRI) scan – May be used in diagnosis and monitoring sample of your bone marrow liquid is taken out. This is called bone marrow aspirate. A
of lymphoma to show very clear pictures of specific areas such as the brain and spinal sample of the solid part of the bone marrow is also taken. This is called a bone marrow
cord (see below for more detailed information about an MRI procedure). trephine (tre-fine).
• Positron emission tomography (PET) scan – A type of specialised CT scan that uses Some people may find a bone marrow biopsy a little uncomfortable. Everyone is different.
radioactive glucose to identify increased levels of tissue activity due to lymphoma. It is a good idea to bring a support person with you when you have a bone marrow biopsy. If
you have a sedative or general anaesthetic, you will still feel a bit drowsy afterwards. Your
MRI scan support person can make sure you get home safely.
MRI uses a strong magnetic field, radiofrequency waves and a computer that produce
After the biopsy, your doctor or nurse will put a plaster or small dressing over the biopsy
detailed images of parts of your body. The MRI machine (scanner) contains a large
site. You may need paracetamol to help ease some discomfort in the area afterwards.
magnet with a tunnel through the middle, which stays open at both ends. The staff will
Your doctor or nurse will talk to you about this.
ask you some questions and ask you to remove any accessories (e.g. hairclips, jewellery,
glasses). They will help position you on the scanner bed and will always be available to After your bone marrow sample has been analysed by the laboratory you will have an
answer your questions or concerns. During your scan the staff will leave the room but talk appointment with your haematologist to talk about the results. You may have other bone
with you through an intercom. Let the staff know if you have a fear of confined spaces marrow biopsies done throughout your treatment to monitor any change or response
(claustrophobia) so they can support you with this during your procedure. to treatment.
The MRI scanner is noisy but it is not painful.
Figure

05 bone

bone marrow

Figure Bone marrow

04
biopsy biopsy needle

skin

MRI scan

12 13
 My diagnosis

Lumbar puncture
A lumbar puncture is a procedure where a small sample of the cerebrospinal fluid (CSF) What health professionals
that surrounds your brain and spinal cord is collected via a long thin needle in the lower
back. The fluid is then examined in the laboratory to check for the presence of cancer cells
within the central nervous system (CNS).
will I meet after my diagnosis?
You will be asked to lie on your side in the foetal position to help keep your spine in the You may meet a range of health professionals who are part of your health care team.
best position (see Figure 06). A local or general anaesthetic is used, just like in a bone Each health professional is an expert in a different area. Working as a team, these
marrow biopsy. You may be asked to lie flat for a short time after the procedure to help health professionals will give you and your family/whānau the best treatment and
reduce the potential side effect of a headache. support so that you can live as well as possible following a blood cancer diagnosis.
Some of the health professionals you may meet include:
Waiting around for tests can be both stressful and boring. Remember to ask beforehand
how long the test will take and what to expect afterwards. You might like to take a book,
• Adolescent and young adult (AYA) • Outpatient clinic nurse – A nurse who
some music or a friend for company and support. keyworker – A specialised nurse or social gives you treatment as an outpatient or
worker who helps young people with their who works alongside a doctor in a clinic.
cancer journey. • Pathologist – A doctor who specialises in
Spinal cord • Charge nurse – A senior nurse in charge the laboratory diagnosis of disease and
in an outpatient department, day unit or how disease is affecting the organs of the
hospital ward. body.
Figure

06
Cerebrospinal • Clinical nurse specialist – A nurse with • Pharmacist – Prepares and checks your
fluid (CSF)
advanced skills in a specific area of cancer medications. A pharmacist can advise
care. This person works closely with you you on how to take your medicine and the
and members of your health care team possible side effects and interactions with
to help you manage the symptoms of other medications.
Lumbar puncture your blood cancer and the side effects of • Physiotherapist – Specialises in
treatment. maintaining and improving body
• Consultant – A specialised doctor who movement and mobility. A physiotherapist
coordinates your health care (includes (or physio) can help you regain
Vertebrae Needle taking haematologists and oncologists). independence and fitness.
sample of CSF
• Dietitian – A dietitian can advise on what • Psychologist – Specialises in helping you
to eat and drink to minimise symptoms manage the emotional challenges of a a
or side effects from your treatment. They blood cancer or blood condition diagnosis,
may also prescribe supplements to make such as stress, anxiety and depression.
sure you are getting the calories and • Registrar – A doctor who is training
Other tests nutrients you need. to become a specialist. You may see
There may be other tests that provide your health care team with information about your • General practitioner (GP) – A family a registrar in clinics, day units and
general health. Your health care team will let you know when you need to have these tests and community doctor might already be ward. Registrars work very closely with
and what they are for. involved with your blood cancer or blood senior specialists (haematologists and
condition diagnosis. They will be informed oncologists).
Preparing for tests throughout your diagnosis and will work • Social worker – Helps you manage the
together with other health professionals practical and emotional impact of having
Before you go for a test, ask your health care team how long the test will take, what the
to support you at home, in the community a blood cancer diagnosis, such as advice
test involves and how you will feel afterwards. Things that you can do to help prepare for and after treatment. about managing at home, employment
the test are: • Haematologist – A doctor who specialises and school.
in the treatment of blood cancers or blood • Ward clerk – Is often the first person you or
• Plan your journey so that you arrive on time and do not have to rush.
conditions. A haematologist or oncologist your visitors will meet on the ward or day
• Find out about parking – your LBC Support Services Coordinator can help. (see below) will be in charge of overseeing unit. Their job is to make sure everything
your treatment and follow-up. runs smoothly on the ward, and can
• Ask a support person to come with you.
• Occupational therapist – Helps you help you with booking and changing
• Ask for an interpreter if needed, your health care team at the hospital can organise this manage everyday activities and do the appointments.
for you in advance. things you want and/or need to do.
• Take your favourite music on a device with headphones. • Oncologist – A doctor who specialises in
cancer and cancer treatment. You may
• Take something to read. be under the care of an oncologist or a
14 haematologist for your treatment. 15
Summary
Blood cells are
made in the bone
marrow and move
around the body.
Blood cells do different
jobs – red blood cells carry
oxygen to body tissues,
white blood cells are
involved in your immune
Problems in making
or regulating blood
cells can result in
a blood cancer or
blood condition.

There are lots of

different health
? My diagnosis

You will need to

have some tests to
confirm or monitor
your blood cancer
or blood condition.

?
system, and platelets professionals you
help with clotting to stop will meet, who are
bleeding. there to support
you along
the way.

You did not cause

your blood cancer
or condition, you
cannot catch it
or give it to
someone else.

16 17
Questions and notes

18 19
 My treatment

My treatment
Taku haumanutanga
Below are some tips that
might help make your
hospital stay a bit nicer:
How will my blood cancer be treated? • Wear your own clothes, and get dressed out of your pyjamas whenever you can.
• Bring your own pyjamas and slippers – they’re more comfortable than a hospital
You might have chemotherapy (chemo), radiotherapy or
gown!
a combination of both. Some people also have a stem cell
transplant. Every blood cancer patient is different – the exact • Bring some beanies or scarves – hospital rooms can get cold, and lots of body heat is
lost from your head (especially if you lose your hair).
treatment you receive, the length of your treatment, and how it is
administered is unique to you. It is very important that you follow • Keep in touch with school, university or work via emails, phone calls, texts and social
your doctor’s advice and take all the medications for as long as media.
you have been told to. More information on different types of • Bring posters, pictures or photos to put up on the walls and make it feel like your
cancer treatment can be found on pages 26-31. own space. Ask your nurse if you can move any furniture around too, for a change
of scenery.
• Bring headphones to listen to music – have a selection of relaxing and upbeat music
that you like.
Will I have to stay in hospital? • Try some light reading – you might not feel like anything too heavy or serious, so
Your doctors may talk about the words ‘inpatient’ or ‘outpatient’. Inpatient means magazines, comics, novels and audiobooks can be good options. Most libraries
that you stay in hospital overnight. Outpatient means that you visit a day ward or have a free app to borrow books from your phone, tablet or e-reader, to give you
outpatient department for treatment but you are able to go home afterwards. While more options.
there are times you may have to stay in hospital as an inpatient during treatment,
• Scrolling back through old photos and videos can make you feel good.
how often and for how long depends on your type of cancer and treatment and how
well you are. • Use scent warmers, diffusers or perfumes to make the room smell good
(note: most hospitals will not allow flames or candles for fire safety reasons).

Staying in hospital can be an adjustment. Some people hate hospitals, but others • Bring a notepad and pen to write down ideas, thoughts, questions and
don’t really mind it at all. It can feel like there is less privacy, and it can be frustrating appointments.
having different routines and being interrupted for tests and treatments. If you are
• Bring a laptop or tablet if you have one – for games, streaming etc. Ask the ward
feeling unhappy, talk to your doctors and nurses about this – you will not be the
clerk or nurses if there is WiFi available.
only person to feel this way. Your treatment team is there to help you through your
treatment in the best way possible for you, and together you can create a plan that • Set a voicemail message on your phone for if you are too tired to speak or don’t want
works. to answer.
• Creative hobbies like knitting, mindful colouring or scrapbooking can be a good way
to pass the time.
• Bring your own pillow, duvet and blankets to make the room feel more like your own.
• Bring a stash of your favourite snacks to have between meals.

20 21
 My treatment

Which hospital will I be treated at? Travel and accommodation support

Blood cancers often require specialist treatment, which can only be offered in some of National Travel Assistance (NTA)
the bigger towns and cities of New Zealand. This means that you may need to travel to The NTA Scheme may be able to cover some of your travel and accommodation costs if
the main centre nearest to where you live for your treatment. Or you may have shared you meet their criteria. Their criteria is based on how far and often you have to travel to
care, which means you have some treatment at the specialist hospital and some at see your doctor or have treatment, or if you have a Community Services Card.
your local hospital. If you have to travel and stay away from home for treatment, you
For full details on the NTA Scheme, including what you can and can’t claim, visit the
will be able to bring a support person with you, e.g. your mum, dad, partner or friend.
National Travel Assistance page on the Te Whatu Ora – Health New Zealand website
(see the list of useful websites on page 83).
Your treatment centre will also help to organise accommodation for your support
person, so they can stay close by. Currently there are no specialised wards for young You can also see who is eligible for a Community Services Card on the Te Hiranga
adults in New Zealand, although there may be dedicated rooms in some of the wards in Tangata – Work and Income website. This can reduce costs of some doctor
the hospitals. appointments, prescription fees and after-hours appointments.

If you are not eligible for the NTA Scheme, speak to your AYA keyworker, hospital social
Centre Address Phone
worker or LBC Support Services Coordinator about other support that is available. Some
Whangarei Hospital Hospital Road, Whangarei 09 430 4100 regions provide shuttle services, and there are non-government organisations (NGOs)
such as LBC or the Cancer Society that may be able to help.
North Shore Hospital Shakespeare Road, Takapuna, Auckland 09 486 8900

Auckland City Hospital Park Road, Grafton, Auckland 09 367 0000 Accommodation
If you are travelling from out of town for treatment, you may be eligible for
Starship Hospital Park Road, Grafton, Auckland 09 367 0000
accommodation support via the NTA scheme (see above). You can also receive an
Middlemore Hospital Hospital Road, Otahuhu, Auckland 09 276 0044 allowance if you are staying with friends or family/whānau.

Waikato Hospital Pembroke Street, Hamilton 07 839 8899 If you need accommodation, we recommend speaking to your hospital social
worker, AYA keyworker or travel coordinator, who can tell you about the hospital
Thames Hospital Mackay Street, Thames 07 868 0040
accommodation options available.
Tauranga Hospital Cameron Road, Tauranga 07 579 8000
If you are under the age of 18 and having treatment in Auckland, Wellington or
Rotorua Hospital Pukeroa Street, Rotorua 07 348 1199 Christchurch, you and your family/whānau may be able to stay at a Ronald McDonald
Hastings Hospital Omahu Road, Hastings 06 878 8109 House. Speak to your treatment team about getting a referral.

Whakatane Hospital Stewart Street, Whakatane 07 306 0999

Informed consent
Palmerston North Hospital Ruahine Street, Palmerston North 06 356 9169
You will be asked to give your informed consent for all treatments or procedures
Wellington Hospital Riddiford Street, Newtown, Wellington 04 385 5999 suggested by a health professional in your health care team. Consent means that you
Nelson Hospital Tipahi Street, Nelson 03 546 1800 agree. Informed consent means that you understand the information and accept the
possible risks and benefits of the treatment or procedure. Informed consent also means
Christchurch Hospital Riccarton Avenue, Christchurch 03 364 0640 that you have had other treatment or procedure options explained to you.
Dunedin Hospital Great King Street, Dunedin 03 474 0999

Invercargill Hospital Kew Road, Invercargill 03 218 1949 If you have any doubts or questions or need more information about a procedure or
treatment, it is important you speak to your doctor or nurse again. It is very normal
to have questions and no question is a silly question! You may need to sign a consent
form (written consent), or you may just say you agree to a treatment or procedure
(verbal consent).

22 23
 My treatment

If you are not able to give informed consent, a legal guardian, welfare guardian or Bring a support person
person with enduring power of attorney can give consent on your behalf. Generally, a
We recommend that you bring a support person along to your appointments.
person over the age of 16 can give informed consent if the doctor feels they are able
Your support person can write down the answers to your questions, remind you of
to do so. It is very normal to feel overwhelmed from all the information and questions.
questions you want to ask and help you remember information. Your support person
Sometimes it can feel like a lot of pressure on you to make a decision or give your
can be a close friend, parent or other family/whānau member and can change from
consent. You can ask for your support person (close friend, parent or other family/
appointment to appointment.
whānau member) to be part of these conversations and decision-making. Your AYA
keyworker or LBC Support Services Coordinator is also there to support you. Prognosis
Your informed consent is also required if you agree to take part in a clinical trial. Prognosis means the likely course of a disease, i.e. how likely it is to be cured or
Clinical trials are explained on the following page. controlled. Your prognosis will depend on many things. Your haematologist is the
best person to give you a prognosis and tell you how well your blood cancer is likely to
respond to treatment.
Making treatment decisions
When doctors and other members of the health care team talk about prognosis, they
The treatment that your doctor will recommend depends on things like: might use the terms complete remission, partial remission, stable disease, relapse or
• Your diagnosis refractory disease.
• Your age Here is what these terms mean:
• Your general health
• How well your condition is likely to respond to treatment. • Complete remission – The treatment has successfully killed the cancer cells so they
can no longer be detected in the blood or bone marrow, and there are no remaining
enlarged lymph glands.
No two people are the same. To help you make the best treatment decision, your doctor
will consider all the information available. • Partial remission – The number of cancer cells has reduced, but there are still some
cancer cells present in the blood, lymph nodes or bone marrow.
Many people feel overwhelmed when they are diagnosed with a blood condition.
Waiting for test results and then making decisions about your treatment can be • Stable disease – The blood cancer has not improved or worsened with treatment.
very stressful. Some people do not feel that they have enough information to make • Relapse – The blood cancer has come back again. Some people’s blood cancer may
decisions, while other people feel that they have too much information. Some people never relapse while others may have a higher chance of relapse.
feel that they are being rushed into making a decision. If treatment is recommended to • Refractory disease – The blood cancer is not responding to treatment (it is ‘resistant’
start immediately, it can be difficult when you feel like you don’t have time to consider to treatment).
all options and process the treatment information.

Your doctor will spend time with you and your family/whānau discussing what they Clinical trials
feel is the best option for you. Ask as many questions as you need to, at any stage. Your doctor might ask you to take part in a clinical trial (also called research studies).
You should feel that you have enough information to make the important decisions Clinical trials help find out if a new treatment or different ways of giving treatment are
that you are facing. better than treatments that are already available.

Second opinion Taking part in a clinical trial is voluntary, which means that you do not have to take
You can ask for a second opinion. A second opinion is when you see a different part in the trial if you do not want to. If you do not want to be part of the trial, your
haematologist or oncologist about your diagnosis and/or treatment. You can ask any decision will be respected. You do not have to give a reason why you don’t want to be
member of your health care team, including your current specialist, about getting a part of the trial and there will be no change in the way you are treated by the hospital
second opinion. or health care team.

Make sure you understand the reasons for the trial and what is involved. You need to
Questions to ask your health care team give informed consent for a clinical trial. Take time to talk through the trial with your
Before going to see your GP, specialist, or another member of your health care team,
haematologist or oncologist and other members of the health care team before signing
make a list of the questions you would like to ask. Some examples of questions you
the consent form.
might like to ask can be found in the appendices on pages 82-83.

24 25
 My treatment

Standard treatment If you are having several cycles of chemotherapy, your doctor may talk to you about
having a central line (also called a central venous catheter or CVC), port or peripherally
Standard treatment refers to common treatments for certain types and stages of blood
inserted central catheter (PICC) line inserted. These are special lines inserted through
cancer. They have been tried and tested (in clinical trials) and have proven to be safe
the skin into a large vein in your arm, neck or chest. Once your line is in place,
and effective in those situations.
chemotherapy and any other IV drugs can be given and blood tests can be taken from
the line, without the need for frequent needles in your arms.
New therapies
There has been a lot of progress in the treatment of blood cancers. New drugs are being
developed all the time. Your doctor will be aware of what new treatments are available PICC line
and you should feel free to ask about your options.
Figure

What is chemotherapy? PICC 07

Chemotherapy (often called chemo) literally means therapy with chemicals. Many
chemotherapy drugs are also called cytotoxic (cell toxic) because they kill cells, Central venous
especially ones that multiply quickly like cancer cells. Each drug affects the cancer cell catheters
in a different way, so usually a combination of two or more different chemotherapy
drugs are given (combination therapy). How much, the timing and types of drugs
used will vary depending on your blood cancer, your age, your general health, and the Vein entry Heart

treatment protocol you will be following.

Port Central line
Chemotherapy is usually given in several cycles (or courses) with a rest period of a
Vein entry
few weeks in between each cycle. This is to allow the body time to recover from the
Central line
side effects of chemotherapy. For example, a typical chemotherapy regimen for acute
myeloid leukaemia (AML) might involve 4-5 cycles of a combination of drugs, given Vein entry
Exit site
over a period of about six months. Port
Dressing
Line clamp
Lumen
Most chemotherapy drugs travel around the body in the bloodstream, which means Bung
they can reach cancer cells anywhere in the body. Sometimes the chemotherapy drugs
also kill healthy cells, which can lead to side effects. Side effects are discussed later in
this section on page 28.

The names of different combinations of drugs are commonly made up of the first
End of catheter
letters of the name of each of the drugs used. For example, someone with Hodgkin
lymphoma may be having a combination of four chemotherapy drugs which are
called Adriamycin, Bleomycin, Vinblastine and Dacarbazine. This combination of What is central nervous system treatment and prophylaxis?
chemotherapy drugs will be abbreviated to ABVD. In some conditions like acute leukaemia and lymphoma, cancer cells are sometimes
found in the central nervous system (CNS) – the brain and spinal cord. The blood
How is chemotherapy given? supply to the CNS is separate from the blood supply to the rest of the body, so it can be
difficult for standard treatments to reach cancer cells in these areas. In these cases,
The different ways that chemotherapy is given are:
CNS treatment and prophylaxis (preventative protection) will be given at various stages
• Into a vein (intravenously or IV) throughout treatment. This usually involves injections of methotrexate and/or other
• As a tablet (orally) chemotherapy drugs directly into the spinal fluid (called an intrathecal injection),
• Into a muscle (by intramuscular injection) through a lumbar puncture. Some types of intravenous chemotherapy, steroids and
• Under the skin (subcutaneously, sub-cut or SC) radiotherapy can also be used to provide protection for the CNS.
• Into the spinal fluid via a hollow needle (intrathecally or IT).
26 27
 My treatment

Side effects of chemotherapy What are steroids?

Healthy cells that multiply quickly in your body can also be killed or damaged during
chemotherapy. Examples of these cells are those in your mouth, stomach, bowel, bone Corticosteroids (or steroids) such as prednisone (prednisolone) and dexamethasone are
marrow and hair. The dead or damaged cells can cause side effects. commonly used in blood cancer treatment. They work alongside chemotherapy drugs
The side effects for each drug or drug combination are different. Most people will have to kill lymphoma cells, make the chemotherapy drugs more effective, and reduce the
some side effects, but some people do not. Side effects may vary depending on the risk of allergic reactions to some drugs. Steroids are usually taken as a tablet but can be
dose of chemotherapy you are having. Most side effects of chemotherapy begin to go given by IV/drip.
away when your treatment is finished.
Steroid treatment commonly has side effects, these can be different for every person.
When you receive chemotherapy, there are breaks during the treatment so that your
body (the bone marrow in particular) has time to recover from the side effects of the Below are some common side effects, and some suggestions for how to deal with
chemotherapy. Side effects of treatment may be short term or long term (sometimes them:
called ‘late effects’). Short-term side effects should go away a few weeks after
treatment finishes, once the damaged cells recover. Long term means that you may • Mood changes (mood swings, anxiety, irritability, tearfulness) – Ask your treatment
experience side effects for months after treatment. team about what support is available and speak to your LBC Support Services
Coordinator.
• Difficulty sleeping – Talk with your doctor about whether you can take the steroid at
Here is a list of the most common side effects of chemotherapy, in alphabetical
a different time. Some people find taking them in the morning helps, other people
order:
prefer to take them right before bed so they are asleep by the time the steroid starts
working.
Anaemia (from a low red blood cell count)
• Stomach pain – Take with food and speak to your treatment team if this continues,
• Bruising and bleeding (from a low platelet count) there may be medications you can take to help.
• Constipation • High blood sugar – If you are diabetic, check your blood sugars more often. You may
• Diarrhoea need to speak to your doctor about adjusting your insulin or other medications.
• Difficulty concentrating or remembering (chemo brain) • Increased appetite and weight gain – This can be common with long-term steroid use.
• Early menopause If you are concerned, ask your treatment team if you can speak to a dietitian.

• Fatigue (extreme tiredness) • Muscle weakness – Steroids may cause muscle weakness or wasting in some people.
Continue regular gentle exercise, you may also find it useful to see a physiotherapist.
• Fertility changes
• Increased risk of infection – Monitor for signs of infection such as a high temperature,
• Hair loss (alopecia)
swelling, red skin or unexplained pain, and speak to your doctor immediately.
• Increased risk of infection (from a low white blood cell count)
• Low mood, anxiety or depression What is radiotherapy?
• Nausea and vomiting
Radiotherapy (also called radiation therapy) uses high-energy X-rays to kill cancer cells
• Organ damage and shrink tumours. Radiotherapy is called a ‘local therapy’ because it only destroys
• Pain cancer cells in the treated area (the radiation field).
• Peripheral neuropathy
Before you start radiotherapy
• Poor appetite and taste changes
The radiation oncologist (doctor who specialises in treating people with radiotherapy)
• Skin changes will calculate how much radiotherapy you need (the dose). You will have scans to work
• Sore mouth (mucositis) out the best position to be in, and the areas of your body that need to be treated will
• Weight loss or gain. be marked with tiny ink dots on your skin using a special pen. Your doctor will treat the
smallest area possible to avoid affecting the normal tissues.
These side effects, and what you can do if you have them, are discussed more
on page 36.

28 29
 My treatment

!
Excessive friction, heat or washing should be avoided
During treatment on areas that have just been treated with radiotherapy.
Radiotherapy is usually given in small doses (also known as fractions) in the Your health care team in the radiotherapy department
radiotherapy department of the hospital. You usually do not need to be admitted to will be able to tell you the best way to care for your skin.
hospital for this treatment, but if you live far away you may need to organise to stay
closer during this time. Your health care team can help you with this.

During radiotherapy you will be positioned on a table underneath the radiotherapy Immunotherapy and targeted therapy
machine, which will give you the planned dose of radiation. Radiotherapy sessions are
Immunotherapy is the use of drugs to help a person’s own immune system recognise
usually short (15–30 minutes), and you will need to stay perfectly still for a few minutes
and destroy cancer cells. Because this type of therapy specifically targets cancer cells,
while the treatment is taking place. You will hear a buzzing sound as the machine
it doesn’t usually damage normal cells and therefore causes less side effects. Side
moves around you. If necessary, important structures like your heart and lungs are
effects are generally mild and can be easily managed.
shielded as much as possible to ensure that they are not affected by the treatment
given. Radiotherapy is painless – you will not see or feel anything during the actual Targeted therapy is the term used to describe a group of drugs which target specific
treatment. If you are feeling anxious, you might like to bring along some music to help molecules that cancer cells need to survive and spread. Targeted therapies work in
you relax. different ways to treat cancer.

!
Radiotherapy treatment does not make you What is a stem cell transplant?
radioactive, as the radiation passes through your For some people, very high doses of chemotherapy or radiotherapy are needed to treat
body. It is okay to interact with other people during their blood cancer. As a side effect of these treatments, normal bone marrow and
and after your treatment. bone marrow stem cells are also destroyed and need to be replaced. In these cases,
a stem cell transplant is used (also called a bone marrow transplant, or peripheral
blood stem cell transplant). If you have a stem cell transplant, you are given high-dose
After radiotherapy chemotherapy followed by stem cells through an IV/drip. The stem cells you are given
There are some side effects from radiotherapy. These vary from person to person and may come from someone else (a donor), or they may be your own cells that were frozen
can be short term or last for a while after treatment. Side effects include: before the high-dose chemotherapy.
• Fatigue (see more about fatigue on page 44).
There are two types of stem cell transplant:
• Skin irritation – skin can become red, dry, painful or warm in the area that has been
treated. Skin changes will be worst just after treatment has ended and should heal • An autologous transplant involves collecting your own stem cells (usually from your
in 4–6 weeks. Stay out of the sun and avoid scented soaps and moisturisers, and skin bloodstream), storing them and then giving them back via IV/drip after you have
products that contain metals during this time. received high doses of chemotherapy.
• Mouth pain.
• An allogeneic transplant is where the stem cells are donated by another person. This
• Parotitis – inflammation of the saliva glands in the mouth, which can cause a dry could be a brother or sister, parent, or a matched unrelated donor. These donated
mouth and jaw pain. stem cells replace your immune system with the immune system of the donor.
• Feeling sick (nausea and vomiting).
• Bowel changes – gas/wind, loose stools, diarrhoea, bloating or cramping. Having a stem cell transplant is a high-risk
• Hair loss in the area of radiation treatment. treatment option and a lot of things are taken
into consideration before it is offered by your
haematologist or oncologist.
After your radiotherapy has finished, you may have scans to see how the blood
cancer has responded. This will help your health care team make decisions about your
More
treatment. If you have had radiotherapy to your mediastinum (chest) area, you may be
information
advised to have earlier or more frequent mammograms, to monitor for breast cancer. is available online

30 31
 My treatment

Complementary therapies
Complementary therapies are not considered standard medical treatment, however
many people find that they are helpful in coping with their treatment and recovery.
There are many different types of complementary therapies, including:
Summary
Treatment for your blood
• Yoga cancer or blood condition can
• Exercise be as an inpatient (staying in Some people like to
• Meditation hospital) or outpatient. use complementary
• Prayer therapies alongside their
• Acupuncture
If you live far away from a main medical treatment to
• Relaxation treatment centre, you may need help with coping and
• Massage to stay closer temporarily, and recovery.
• Homeopathy there are some support options
• Visualisation available for this.
• Aromatherapy
• Reiki You (or your parents if you are under
• Art therapy
16 years of age) will need to consent
• Music therapy
(agree) to any treatments, and have
• Tai chi.
the right to be involved in the decision-
Complementary therapies should ‘complement’ or assist with recommended medical
making process for your treatment.
treatment. They are not recommended as an alternative to medical treatment. It is
important to realise that no complementary or alternative treatment has
been proven to be effective against blood cancers and conditions. Your treatment will depend on
a number of factors, and may
It is also important to let your involve chemotherapy, steroids,
haematologist know if you are radiotherapy, immunotherapy
using any complementary or
alternative therapies in case they
or a stem cell transplant.
interfere with the effectiveness

!
of chemotherapy or other
treatments you may be having. You’ll find a
glossary of
terms at the back
of this booklet
if you need help
along the way.

32 33
Questions and notes

34 35
 Side effects

Understanding Reduced immunity

Chemotherapy (and sometimes radiotherapy) can temporarily affect the bone

side effects
marrow’s ability to produce enough white blood cells, platelets and red blood cells.
As a result, your blood count (the number of white blood cells, platelets and red blood
cells in your blood) will generally drop in the first few weeks of treatment. How long it
takes for your bone marrow and blood counts to recover mainly depends on the type of
chemotherapy you receive.

Te whai mārama ki ngā mate āpiti The point at which your white blood cell count is at its lowest (called the nadir) is
usually expected 10–14 days after starting each cycle of your treatment. You will have a
blood test to check your blood count.
How will I be affected?
At this stage you will be neutropenic, which means that your neutrophil count is low and
Your quality of life (how you feel, and your ability to do the things you are more at risk of getting an infection. Neutrophils are important white blood cells
you want to do) is very important. The challenge is to treat your that help us to fight infection.
blood cancer or blood condition with the fewest possible side
effects. While your white blood cell count is low, you should be extra careful to prevent infection.
Some things you can do include:

Chemotherapy and radiotherapy kill cells that grow quickly. This means they kill • Washing hands before eating and after going to the toilet
cancer cells, but they can also cause damage to fast-growing normal cells, including
• Showering daily
hair cells and cells in your mouth, stomach and bone marrow. When normal cells are
damaged, this can cause side effects. • Brushing teeth with a soft toothbrush after meals
• Avoiding crowds, e.g. malls, movie theatres, public transport, concerts
Radiotherapy side effects usually depend on the area of the body that is being • Avoiding people with infections that are contagious, e.g. colds, flu, chickenpox
treated, e.g. radiotherapy near the stomach is more likely to cause nausea and
• Only eating food that has been properly prepared and cooked
vomiting. Chemotherapy side effects can happen anywhere in the body, as the
chemotherapy drugs are carried around in your blood. The side effects, and how bad • Get someone else to clean your pet’s litter tray.
they will be, are different for every person. Side effects can be horrible, but usually
Your doctor and nurse will give you more information on how to reduce your risk of
they don’t last very long and will disappear with time.
infection while your white blood cell count is low. If you do develop an infection you

!
may experience a fever, with or without shivering/shaking. Infections while you are
neutropenic are serious and need to be treated with antibiotics immediately.

Tell your doctor or

nurse about any side
effects that you have,
because there are lots
of treatments that can
be given to make you
feel better.
36 37
 Side effects

It is important that you contact your doctor or the hospital for Anaemia
advice immediately (at any time of the day or night) if you are
feeling very unwell, or if you experience any of the following: Red blood cells contain haemoglobin (heem-a-glow-bin), which carries oxygen around
your body. If your red blood cell count and haemoglobin levels drop, you may become
• A temperature over 38°C and/or an episode of shivering anaemic.
(don’t wait to see if it goes away)
When you are anaemic, you may look pale and feel more tired than usual. If your
• Bleeding or bruising, e.g. blood in your urine or faeces (poo), coughing up blood, haemoglobin level is very low, your doctor may prescribe a blood transfusion via a drip/IV.
bleeding gums or a persistent nosebleed
• Nausea or vomiting that prevents you from eating or drinking or taking your normal
medications Bleeding and bruising
• Diarrhoea, stomach cramps or constipation Platelets are blood cells which help clot the blood to stop bleeding. After treatment, your
• Coughing or shortness of breath platelet count may drop – this is called thrombocytopenia (throm-bo-sy-toe-pee-nee-a).
• The presence of a new rash or reddening of the skin which may be itchy When your platelet count is very low you can bruise and bleed more easily.

• A persistent headache Things that can help:

• A new pain or soreness anywhere
• Avoid food with sharp edges such as potato chips as these can cut your gums
• You cut or otherwise injure yourself
• Use a soft tooth brush

!
• If you notice pain, swelling, redness or pus anywhere on your body.
• Don’t floss your teeth
• This might sound extreme, but a mild infection that would make
someone with a healthy blood count feel a little off-colour can • Don’t shave with a razor blade
be life-threatening for someone who is neutropenic. • Move about carefully so you don’t bump into things or trip
• Don’t play contact sports such as rugby or hockey
• Wear protective gloves when doing work around the house or garden.
12:35 PM

You may be given a platelet transfusion via drip/UV to 97%

reduce the risk of bleeding until your platelet count recovers.

Hospital

Call the hospital straight away if you have:

!
Should I have medicine if I feel unwell? • Nosebleeds
It is important that you do not use any drugs to bring your temperature down • Bleeding gums
(e.g. paracetamol, ibuprofen) until you are reviewed by a doctor. This could mask CA LLI NG ...
• Tiny red or purple spots (petechia)
an infection, which could lead to serious life-threatening complications. Do not take
on the skin that looks like a rash
aspirin or ibuprofen in any form as this can increase the risk of bleeding if your platelet Remind Me
Message

count is low. Always check with your doctor first before taking any over-the-counter • Heavier than normal menstruation bleeding.
medications.

What is GCSF? Body image

You might be given a drug called granulocyte colony-stimulating factor (GCSF) to help
Your body is going through some big changes right now. You probably feel different, and
increase your neutrophil count. This drug works by telling the bone marrow to make
sometimes the person you see in the mirror looks different to what you are used to as
more neutrophils. GCSF is given as an injection, and the nurse will teach you, a family/
well. Hair loss, skin changes, weight changes and fatigue can all change how you feel
whānau member or friend how to do this at home. There are not usually any major
about yourself. This is very normal, and you are not the only one going through this right
side effects, but some people experience aching bones.
now. It is important to remember that most of these changes won’t last very long and
should resolve once your treatment is finished.

38 39
 Side effects

Hair loss (alopecia) If you are a citizen or usually live in New Zealand, the Ministry of Health has a wigs and
hairpieces subsidy that you may be entitled to. How much you can get depends on your
Hair loss is a very common side effect of chemotherapy and some forms of radiotherapy.
age, and whether your hair loss is permanent or temporary. You can use this money to
This is because the drugs used to kill the blood cancer cells also kill other fast-growing
purchase wigs, hats, head coverings, or other similar products. You will need a medical
cells such as hair cells. Many people lose all their hair. Others find their hair falls out in
certificate from your specialist. You can get more information on the subsidy from your
patches, thins on top, and the hair that remains is usually weak. Hair loss can also affect
treatment team, LBC Support Services Coordinator or the Ministry of Health (see the list
your eyebrows, eyelashes, arms, legs and genitals.
of useful websites on page 83).
Hair usually starts to fall out within a couple of weeks of beginning treatment and tends

!
to grow back 3–6 months after finishing. You may find your hair grows back differently
In summer, it is important to protect yourself
to what it was before – it may be thicker, wavier or a different colour. You may experience
itchiness or scalp tenderness while losing your hair.
against sunburn. Your skin will be more sensitive
to the sun after chemotherapy so it’s important to
Some tips for hair loss:
apply sunblock and cover up.
• Don’t use hairdryers, straighteners or harsh chemicals on your hair, as this can make
hair loss worse. Skin and nails
• Using a soft hairbrush and baby shampoo can help with itchiness or pain on your scalp. Sometimes chemotherapy can cause changes to your skin and nails. Your skin may
become dry or it might get more oily. It can also become red, sore, itchy and more
• Pat your hair dry with a towel, rather than rubbing it.
sensitive. Your nails may become brittle and flaky. Ridges or lines may appear on your
• If you lose all your hair or decide to shave it, protect your head from the sun with a hat, nails, and the skin around them can also become painful or swollen.
scarf or wig. During treatment your skin is even more sensitive to sun damage.
Washing with a soft cloth and warm water can be soothing – choose gentle or sensitive
• Take a beanie with you to hospital to keep warm in the air conditioning. face washes and soaps.

“
If you shave, use an electric shaver rather than a razor, which can increase the risk of
bleeding and infections if you cut yourself. You may need to avoid waxing and chemical
If I could give myself one piece of advice, it hair removal while your skin is sensitive.
would be to document the journey. Keep a
Makeup is usually okay to wear, but it is sensible to patch test your makeup to make sure
diary and don’t be afraid to take photos.
your skin doesn’t react to it. If you have radiotherapy, avoid wearing makeup in that area.
I was devastated when I lost my hair and felt
hideous for months. I know that sounds silly Weight loss
to some people but being a 21-year-old woman It is really common for your weight to change due to your blood cancer or its treatment.
at the time, my hair meant a lot to me. You may feel less hungry, or nauseous and you may lose weight. Losing a lot of weight
can make you feel very exhausted with no energy (fatigued) which may make it harder
Every time I looked in the mirror I was to cope with the treatments. If you or haematologist are worried that you’re losing too
reminded of how sick I was and I couldn’t much weight, they may refer you to a dietitian who can help you come up with a plan
escape it. Despite this, I wish I had taken lots Other things that may help include:
of photos. Once you reach the end of your • Eating foods high in calories (like ice cream, cheese, milkshakes) and proteins (like
fight and even in the future years, you will be meat, eggs, nuts).
able to look at those photos and although they • Treat your eating like taking your medicines – part of your treatment plan to get better.
may have been the toughest moments of your “ • Don’t worry if there are only a few foods you like – eat lots of those.
life, it reminds you of how incredibly strong
you are and how far you have come. The pressure of needing to eat and gain weight can be really challenging and bring up a
range of emotions for you. Your health care team are there to support you so ask for extra
help if you need.
Dani
40 41
 Side effects

Weight gain Constipation

Some treatments can cause constant hunger and weight gain. One type of drug that It is also important to tell your doctor or nurse if you are constipated or if you are feeling
affects hunger and weight is steroids. Some people may be on big doses of steroids as any discomfort or pain around your bottom (anus) when you are trying to move your
part of their treatment plan. One of the side effects of steroids is constant hunger which bowels (poo).
can lead to weight gain. You may find these changes to your body upsetting or hard to
Things you can do to help:
manage. If you are worried about your weight changes, ask your doctors or nurses if you
can speak to a dietitian and/or psychologist. They will talk to you about your concerns, • Drink plenty of water
and help you make any changes you need to.
• Eat more fibre such as cereals, fruit and vegetables
Other tips that may help include:
• Do some gentle exercise
• Focus on eating healthy food and snacks that are readily available
• Talk to your doctor or nurse about getting some gentle stool softeners or laxatives
• Exercise regularly if you can
• Talk to a dietitian.
• Don’t avoid eating because you’re afraid of gaining weight. The nutrients from food are
really important for your general health
Difficulty concentrating or remembering
• Wear clothes you feel comfortable in
• Talk to your family/whānau, friends or health care team if you’re feeling upset.
(chemo brain)
Blood cancer and its treatment can sometimes make it harder to think clearly or
Bowel changes remember things. You may hear some people describing this as chemo brain or chemo
fog. How you are affected is different from person to person, but some people have
Diarrhoea trouble speaking, thinking, making decisions or concentrating.
Chemotherapy and radiotherapy can cause some damage to the lining of your bowel It can even make you feel more emotional, and you might find yourself getting angry
(gut, intestines). This can lead to stomach cramps, wind, abdominal swelling and easier. For most people this is temporary, but some people experience this for longer.
diarrhoea. You should tell your doctors or nurse if you experience any of these symptoms.
If you have diarrhoea, your health care team will do a test to see if you have an infection.
After this, you will be given some medication to help stop the diarrhoea.
Things you can do to help:
• Take the drugs your doctor or nurse give you to stop the diarrhoea
• Use soft toilet paper
• Apply a barrier cream around your bottom to protect and soothe the skin More
• Drink plenty of fluids – if you are unable to drink, tell your doctor or nurse as you may information
is available online
need to have a drip/IV
• Talk to a dietitian about changes you can make to your diet. 12:3
5P
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97%

Ho
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Call the hospital straight away if you have: tal

• More than 4 episodes of diarrhoea

in a day. CA
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42 43
 Side effects

Fatigue Eating and sickness

Eating when you feel sick can be difficult, but an empty stomach can sometimes make
Fatigue is extreme tiredness and is one of the most common side effects of blood cancer nausea worse.
and many blood conditions. It can be related to your blood cancer, your treatment
and/or other complications such as anaemia or infection. Fatigue can affect everyone There are some things you can try to make it easier to eat:
differently. Some people may feel better after a few days, while others may feel fatigued
for weeks or months. • Drinking smoothies or milkshakes may be easier than eating solid food if you are
feeling unwell
Fatigue for people with blood cancers is not the same as normal tiredness. It can make
simple activities such as showering or even walking around your home difficult. It will • Try cool or cold food such as jelly, ice cream and yoghurt
not be fixed by having more sleep. It can be hard watching other people out and doing • Eat slowly and try not to watch other people eat
things, when you don’t have the energy to join in. Remember, fatigue is really common
• Drinking flat ginger beer or soda water and eating dry toast may also help if you are
and should get better by itself with time.

“
feeling sick
• Get plenty of fresh air and avoid any strong or offensive smells
I found it so frustrating when I told my
siblings that I was too tired to do something • Keep drinking water, even if you feel sick – you may find that you feel worse if you don’t.
Sucking on ice cubes or having an ice block might be easier than drinking
and they would say ‘oh me too’. I felt like
“ • Try sucking a lolly if you get a strange taste in your mouth from any of the drugs you
saying ‘you have no idea!’
More are taking.
information
Ben is available online Nutrition and diet
Having enough nutritious food is important in helping your body to cope with your
disease and treatment. Talk to your doctor or nurse if you have any questions about your
diet or if you are considering making any big changes to the way you eat. A dietitian can
You might find it helpful to keep a diary so you can work out if there is a pattern for advise you on planning a balanced diet that is right for you. If you are in hospital you may
your good and bad days – then you could plan to do more things when you are likely to be able to store your own food and snacks, or have someone bring in your favourite foods.
have more energy. Having plenty of rest and a little light exercise each day might help to
make you feel better as well. Getting out in the fresh air and doing some gentle exercise When your immune system is low, you are at higher risk of getting very sick. You will
is important for your general feeling of well-being and it may also help to reduce your need to be careful around eating some foods to reduce the chances of food poisoning.
fatigue. It is important to listen to your body and rest when you are tired. When you are in hospital, you may be placed on a ‘low risk’ or ‘neutropenic’ diet. The
nurses or your dietitian will explain which foods you should avoid. The Ministry for Primary
Nausea and vomiting Industries (MPI) also has a guide to food safety for people with low immunity (see
page 83 for website link to this booklet). When you are neutropenic you need to be very
Some treatments, especially some types of chemotherapy, can make you feel sick careful when preparing and cooking food. Be sure to:
(nausea) and vomit. However, there have been huge improvements in the availability of
anti-sickness (antiemetic) drugs, so there are lots of things you can take to control this. • Always wash your hands before preparing or eating food
You will be given anti-sickness drugs before and for a few days after your chemotherapy • Prepare food in a clean place
treatment. You may find it helpful to take your regular anti-sickness medication an hour • Prepare raw chicken on a separate chopping board from other foods
before eating. Some people also feel sick at just the thought of having their treatment,
eating or even the smell of food. This is called anticipatory nausea. Some people find that • Wash fresh fruit and vegetables well
thinking about the positive aspects of treatment (such as the chemotherapy destroying • Cook food well and makes sure it is very hot
cancer cells) can help reduce anticipatory nausea.
• Make sure reheated food is very hot
You should tell your doctor or nurse if you think that the anti-sickness medication is not • Eat food before its best before/ use-by date
working or if you still feel sick. They might be able to give you a different medication, or a
stronger dose. • Do not reheat food more than once.

44 45
 Side effects

Changes in taste and smell Sexual well-being

Both chemotherapy and radiotherapy can cause changes to your sense of taste and
smell. This is usually for a short time, but for some people it can last up to several It is normal for your diagnosis and treatment to impact your body and sexual activity.
months. You may find food and drink taste really bland – or just ‘wrong’. This can be Some of this information may not apply to you, but it is designed to cover some different
really disappointing. ways your diagnosis can impact your sexual well-being (or health).

You can be intimate, and have sex during treatment, however there are some things you
Some people find that adding a little more
should know.
sugar to sweet foods and salt to savoury
foods can help. Others find spicy foods more You may find you have less interest or comfort around having sex. Remember to only
enjoyable to eat. If you are thinking about using do what you are comfortable with and to talk with your sexual partner. Side effects can
complementary supplements, e.g. vitamins make having sex difficult (i.e. vaginal dryness), fatigue and mood changes can mean
or medicinal herbs, it is very important to talk you are less interested. This is very normal and is not a reflection on you or your partner.
to your doctor first because they can interfere More
information It can be helpful to communicate with your partner and tell them how you feel. Some
with the effectiveness of chemotherapy or people prefer to focus on other ways of feeling close, such as cuddling, watching movies
is available online
other treatment you are having. together or massages.

Always use a condom (or other physical barrier) during sex to protect your partner
Sore mouth (mucositis) from chemotherapy exposure and to avoid catching sexually transmitted infections
Chemotherapy and some kinds of radiotherapy can cause inflammation of the lining of (STIs). Chemotherapy drugs can be in your bodily fluids, which includes saliva, vaginal
your mouth and digestive system – this is called mucositis. It usually starts about a week fluid and semen (the fluid that contains sperm) for up to 7 days after you’ve finished
after the treatment has finished and goes away once your blood count recovers – usually chemotherapy. When using a condom it is important to use a water-based lubricant
a couple of weeks later. It can be really uncomfortable and may cause ulcers or bleeding. (lube) to reduce friction and risk of bleeding. Water-based lube can be bought at a
Oral pain relief and other topical drugs (that can be applied to the sore area) can help. If supermarket, chemist or online.
the pain gets worse, stronger pain killers might be needed.
If you have a low platelet count, this could increase your risk of bleeding, so avoid rough
Sometimes your salivary glands can be affected, causing either a dry mouth or too much sex and use a water-based lubricant. If you do bleed after sex, tell your health care team.
saliva. Small sips of drinks or sucking on ice cubes can be effective with a dry mouth, and If the bleeding does not stop, contact the hospital straight away.
some pharmacies sell a saliva substitute which can help.
You won’t spread your blood cancer to your partner by having sex. Blood cancers and
Mouth care conditions are not contagious and cannot be passed on to anyone else.
It is important to keep your mouth as clean as possible while you are having treatment,
You should avoid getting pregnant (or getting your partner pregnant) while having
to help prevent infection. It is especially important to do your mouth care regularly while
treatment, as the drugs used to treat most blood cancers and blood conditions are toxic
your mouth is sore.
and can cause harm to the developing baby. You should use contraception (birth control)
Your health care team will show you how to care for your mouth during this time, and until your doctor tells you it is safe to try and have a baby. If you are pregnant when you
may recommend a gentle mouthwash, soft toothbrush and mild toothpaste. Avoid are diagnosed or find out that you are pregnant while having treatment, it is important
mouthwashes you buy at the supermarket, as these are often too strong or may contain that you tell your health care team immediately. They will discuss various options with
alcohol which will hurt your mouth. Use a lip balm regularly to prevent or treat cracked you, and whether any changes need to happen to your treatment plan.
and sore lips.
If you have any questions about intimacy or sex, ask to speak with your nurse, doctor
Avoid using dental floss as this increases the risk of bleeding gums. or AYA key worker. They are great people to ask your questions to as they have these
conversations with patients everyday.
It is also helpful to let your doctor know if you have had any problems with your teeth or
gums in the past as chemotherapy can sometimes cause old problems to flare up. Your
doctor might recommend you see a dentist before starting treatment.

46 47
 Side effects

Menstruation Egg freezing or ovarian tissue freezing

Egg freezing (oocyte cryopreservation) involves collecting and freezing some of your eggs
If you normally menstruate (get periods), you may find your periods stop or come at until you are ready to use them. The process usually requires your ovaries to be stimulated
random times. You may be given a contraception pill to stop your periods. This prevents by hormonal drugs in order to get lots of mature eggs. This process takes 10-14 days, so
heavy bleeding and blood loss when your platelet count is low. It is best to use pads or unfortunately may not be possible if your treatment needs to start urgently. It is funded
a menstrual cup instead of tampons, as these can increase your risk of infection. Your by the government (will not cost you anything) if you are under 40 years old and do not
health care team is available for you to ask any questions about your period or bleeding have any other children.
that you’re concerned about. You may feel uncomfortable talking to your health care
team about your periods but it is very important to let them know if you have any extra or To freeze ovarian tissue (ovarian cryopreservation), part of your ovary is removed by
heavy bleeding. keyhole surgery and the tissue is frozen. There is funding available for this procedure if
you are under 18 years and meet their eligibility criteria. A fertility specialist will discuss
Some treatments may cause you to go into early menopause (when your periods stop due with you the details of how they may be able to transplant your ovarian tissue back
to hormone changes). If you have gone through menopause, you will not be able to have into your body with the hope that the ovary starts functioning again and eggs can be
children without the assistance of fertility treatment (see below). Ask your doctor about collected. They can also discuss what funding options are available to you.
whether your treatment is likely to cause early menopause or affect your fertility.
Embryo freezing
Fertility and cancer treatment Embryo freezing (embryo cryopreservation) involves collecting eggs from your ovaries
(usually after hormonal stimulation) and fertilising them with sperm. The embryos are
Your fertility is your ability to have a biological child – either to get pregnant, or to frozen until you are ready to use them. This process may be an option if you are in a
get someone else pregnant. Some types of treatment (such as chemotherapy and relationship with a male partner and he is willing to use his sperm, or if you have donor
radiotherapy) can reduce your fertility, making it difficult to conceive or reproduce. Not sperm. This process takes 10–14 days, which may not be an option if your treatment needs
all people who have a blood cancer or condition will be affected, other people may be to start straight away.
affected temporarily or permanently. It may mean that in the future you might not be
able to have a child when planned or you might need some help to have a baby (fertility IVF (in vitro fertilisation)
treatment). It is important to discuss how your treatment will affect your fertility before IVF is the process that uses collected sperm and eggs to make one or more embryos in
you start your treatment. Not all treatments will cause infertility or make it harder to a laboratory. When someone is ready to use a frozen embryo, the specialist doctor selects
have children – so it’s important to ask. the embryo they consider has the best chance of a pregnancy to be transferred into the
uterus.
Before starting treatment, you should be asked if you want to freeze your sperm or
eggs, or an embryo (fertilised egg). Unfortunately, not everyone will have the option Fertility and emotions
of being referred to a fertility specialist before treatment starts. This is because some
Finding out that your treatment could impact your fertility may make you feel upset,
blood cancers and conditions (such as acute leukaemia and aggressive high-grade
worried or angry. It is another area of your treatment that may seem uncertain and
lymphoma) require treatment to start immediately and it is life-threatening if it is not.
overwhelming. It is normal to feel a range of emotions and if you have a partner, they
Your haematologist will explain this to you if this is the case. You may wish to speak to
may also be experiencing the same.
a fertility specialist even if you have already started treatment or are at a low risk of
fertility problems after treatment. It might be possible to arrange a consultation over
It may be friends, family/whānau, a
the phone. You can also talk with a fertility specialist about your options after you have Men
partner, a psychologist, your health
finished treatment.
care team or LBC Support Services
Freezing sperm Coordinator. Your health care team or
fertility specialist can discuss your options
Freezing sperm (sperm banking) involves getting a sperm sample (by ejaculation) and
further or answer any specific questions
freezing it using liquid nitrogen. The sample may be taken at a fertility clinic, or in some More Women
you have about your treatment and its
cases may happen on the ward. Sperm can usually be stored for up to 10 years, and you information
potential effects on your fertility. It is a
can request to store it for longer. The sperm sample can then be used later when you are is available online
good idea to talk to someone who can
ready to have a baby.
listen and help you process these feelings.

48 49
Summary
Some treatments can
cause unpleasant side
effects – the side effects
that you will experience
depend on the treatments
you have had, their doses,
and how your body
responds.

Keep talking to your

treatment team about your
side effects (e.g. fatigue,
diarrhoea, constipation,
nausea, vomiting, sore
mouth) – there are often
When you are
neutropenic you
should be extra
careful to prevent
infection

Infections while you are

neutropenic can be serious
and need to be treated
with antibiotics as soon
as possible. It is important
that you contact your
doctor or the hospital for
advice immediately 24/7.

Your body is going

When your platelet
count is very low
you can bruise and
bleed more easily.

Some treatments can

? Side Effects

affect your fertility – ask

your treatment team
if this is likely to affect
you, and any steps you
can take to preserve
your fertility.

It is normal for your

diagnosis and treatment
to impact your sexual
activity. If you are
through some big having sex, you should
things that can be done use contraceptives
to make them more changes which can
to avoid pregnancy,
manageable. bring up a lot of and use condoms to
different feelings. protect your partner
Hair loss, skin from exposure to the
changes, weight chemotherapy drugs.
changes and fatigue
can all change how
you feel about
yourself.

50 51
Questions and notes

52 53
 Life with cancer

Life with
cancer
Do not be afraid to ask the same questions again if you have forgotten what thas
been said, or what things mean – your doctors and nurses understand that it is a lot of
information to take on board all at once.

You may find that as your treatment progresses your anxiety lessens over time.
If you are feeling very anxious or your anxiety is not improving, ask your treatment
Te ora tahi me te mate pukupuku team about whether you can speak to a counsellor or a psychologist.

Organisations like LBC, CanTeen and the Cancer Society can also help support you
Feelings with your anxiety.

There is no right or wrong way to feel throughout your diagnosis

and treatment. Everyone is different, and your feelings and the
way you cope with these feelings may not be the same as others
going through the same experience.

Your feelings can change over time, and you will have good and bad days. When you
are first told that you have a blood cancer you may be shocked or numb – as though
it’s all happening to someone else. Whatever your feelings are right now, give yourself
the space and time to process them.

For many people, culture, language, religious or spiritual beliefs can be very
important in helping you and family/whānau to cope with your diagnosis and
treatment. Information regarding your diagnosis and treatment can be found in
many different languages. Translators can be arranged, and your doctor or nurse
can help organise any cultural or religious support you need. In New Zealand, most
hospitals have kaiāwhina/kaumātua, Pacific health navigators and chaplaincy
teams available to support you.

What if I’m feeling anxious?

Following your diagnosis with a blood cancer or blood condition, you
might feel a bit unsettled, afraid or worried. You may have anxiety
about your diagnosis and treatment and what it will mean for you
and your family/whānau.

It can be especially scary when you are starting out and you have
lots of questions – our brains tend to focus on the worst-case
scenarios. Talk to your doctor and nurses, ask questions until you
understand this new medical language and information. Remember
that it takes time to absorb new information, so having someone
you trust and who will be with you throughout your
treatment journey may help.

54 55
 Life with cancer

What if I’m feeling emotional? Talking to people about how you feel is really helpful. Some people find it helpful to give
friends and family/whānau suggestions about how to feel more connected, such as a
Having strong emotions, or having your moods swing from one to another (such as from daily text, your own playlist, or notes you can stick up on the walls in your hospital room.
anger to sadness to stress) is very normal. You are coming to terms with a new diagnosis, You can also connect with others your age who are going through something similar.
new treatments and big life changes. Medications such as steroids and sedatives can also
affect how you feel. LBC run in-person and online events, which are a good way to meet other people in the
same boat. LBC also has private online forums, which are a great way to meet people
There will be days when you are feeling positive and other days when you won’t. Feeling
locally and from around New Zealand having similar experiences. Talk to your LBC
this way is okay and normal. You don’t need to make yourself ‘look on the bright side’ or
Support Services Coordinator about how to get involved with these.
‘think positively’ if that’s not how you are feeling right now. It is okay to feel how you feel.
It can be helpful to focus on one step at a time, and one day at a time. If you are aged 13–24 years, you may also like to connect with CanTeen, an organisation
which supports young adults with cancer and their siblings. It is a great way to meet
What if I feel out of control? other young adults with cancer around New Zealand and connect with them in person,
or virtually via their CanTeen Connect app. There are also local and international websites
With so many big changes and new treatments, it can sometimes feel like you don’t have and forums that you can join (see the list of useful websites on page 83).
much control over your life – either because other people are making decisions for you,
or you don’t feel that you can make the decisions you need to. This can make you feel Am I depressed?
vulnerable.
It is normal to feel sad or down when something stressful or upsetting happens. Usually
Focussing on the things you can control can help you feel more stable and confident in the feelings fade over time or get better when life improves. If things are improving but
yourself. For example, you can decide how much to know about your diagnosis – you can you still feel low, or the feeling lasts for more than two weeks, you may have depression.
find out lots of information with all the details, or you can choose not to know much
about it at all. You can talk to your nurse about the timing of your treatment – can you The key signs of depression are:
have the drugs at a time of your choice? Even small choices, such as ice cream or no ice • Constantly feeling hopeless, or having a low mood
cream, can help – no matter how big or small the decision is, you have taken control.
• Not being interested or getting pleasure from things you used to enjoy.

“
Other possible signs of depression are:
Take each day as it • Feelings of anxiety
comes, you may feel • Feeling restless or irritable
overwhelmed but you
WILL get through it.
“ • Loss of energy or tiredness
• Feeling lonely or empty
• Sleeping too much or too little
Tanya • Losing or gaining weight
• Feeling bad about yourself, or things you’ve done

!
• Having difficulty concentrating
• Not feeling like having sex
Loneliness • Thinking about death a lot
Having a blood cancer or blood condition • Thinking of harming yourself.
can make you feel alone, even when you are
surrounded by people. It might feel like no one really If you are depressed, the best thing you can do for yourself is ask for help and
understands what you are going through. Some people might treat you differently support. It can help talking about how you feel with someone you trust, such as a
because they don’t know what to say or how to act around you. You might need to friend or family/whānau member. There are options available, and people who can
miss some school, university, work or social activities because of your treatment, help you. Speak to your doctor, nurses, LBC Support Services Coordinator or call the
and sometimes you might need to travel to another town or a city. Depression Helpline on 0800 111 757 or text 4202.

56 57
 Life with cancer

Coping strategies

“
A coping strategy is something you can do or think to help you deal with the hard things
that come with having a blood cancer or blood condition. Having a range of coping
strategies can help you feel more in control and feel better about how things are going. There are very successful stories out
Everyone is different, so what works for someone else might not work for you – it is worth there, don’t be afraid, fight hard
trying a few different things to see what you find most helpful. and you will become one of them.
Some helpful coping strategies are: You would be surprised by how
• Learning more about your illness – Some people feel more in control when they know
many lives you’ve touched and how
what to expect. Tell your doctor how much or how little you want to know. inspirational you would be to
“
• Asking questions – Ask anything you want to know about your illness or treatment. other people, you got this!
Write the answers down so you can look at them later if you want to. Ask again if you
forget, or still don’t understand – it’s okay to keep asking. Carlos
• Looking after yourself – Ask your nurse if there are parts of your care you can do
yourself (e.g. taking your own medications, changing your own dressings, choosing
your own foods).
• Talking – Telling someone how you are feeling is better than bottling it up. It can feel
good to let it all out. Sometimes talking to someone less close to you (like a counsellor
or your LBC Support Services Coordinator) is easier than talking to your close friends Relationships
and family/whānau.
• Choose who you hang out with – Spend time with people who make you feel relaxed What do I tell my friends and family/whānau?
and good about yourself. When you receive your diagnosis, you may find it difficult to tell your friends and family/
• Writing – Keep a journal or blog, or document your journey on social media. LBC has whānau. Everyone reacts to big news in different ways, and the people closest to you may
sticker journals available if you want to get started, ask your LBC Support Services feel confused, stressed, angry or upset. They may not know what to do, or the best way to
Coordinator. help you.
• Laughing – Watch something funny, spend time with people who make you laugh.
It is important to communicate with your family/whānau and friends about how you
• Goal setting – Short-term and long-term goals can help keep a sense of perspective.
are feeling. Tell them how they can help you. Simple things such as watching a movie
Little goals are good too, such as finishing your book or TV series.
together can take your mind off your treatment and make life feel more normal. You
• Going somewhere different – Leaving your room, even just down the hallway, can be a don’t have to talk about your diagnosis all the time if you don’t want to. Remember,
much-needed change of scene. there is no right or wrong way to talk to your loved ones – you know them better than
• Napping – Being really tired can make life feel harder, and dealing with stress can be anyone else.
more difficult. Don’t feel bad about taking a nap or having an early night if you
need to. When you are used to your treatment pattern, you will have a good idea of which days
you are likely to feel your best, and which days are not so good. Plan to do things with
• Exercising – Easy exercise like a walk or a gentle swim can be really helpful. Just check
friends on the good days, and let yourself rest on the hard days.
with your health care team first, and don’t push yourself too hard.
• Mindfulness and meditation – This can be really helpful for stress management. Sometimes it can feel like your relationships with friends, family/whānau or your partner
There are lots of great resources online to get you started. can change after your diagnosis. This might be because they don’t know much about
• Asking for help, and accepting it when it is offered – Life is easier with support, so your cancer, or don’t understand what you are going through. They might struggle to
see if there are people who can help you with study, shopping, cooking or getting rides. cope with their own feelings, or not know how to support you. There is support for your
• Support groups – These are a great way to connect with others, let out your emotions partner, friends and family/whānau so don’t feel like you need to support them or ‘stay
and fill your social tank. Ask your LBC Support Services Coordinator about what is strong’ for them. Whatever you are feeling, it really helps to keep talking and listening to
available. the people closest to you.

58 59
 Life with cancer

Who gets to make the decisions? What about my partner?

If you are over the age of 16, you can make your own decisions about your treatment and care. An intimate relationship can be another important support when you are diagnosed and
are having treatment. A boyfriend, girlfriend, partner or spouse can be a good person to
If you are unable to make decisions for yourself, e.g. if you are unconscious, your next talk to about hopes, fears and concerns. However, being diagnosed with a blood cancer
of kin will be involved in the decision making. Your next of kin may be your parents, or blood condition is a major life-changing event, for both you and your partner; it can
guardians, or partner if you are married or in a civil union. An exception to this is for blood take a lot of energy to keep a relationship going, especially if you haven’t been together
transfusions. If you need a blood transfusion and are unable to consent, your medical for very long.
team can go ahead and give you a transfusion even if your next of kin is unavailable.
Being diagnosed with a blood cancer or blood condition can take up a lot of time. There
If you are younger than 16, your parents or legal guardians are the ones who make are lots of appointments and hospital visits, and there might be extra travel as well. This
medical decisions for you. However, even if you are under 16, the law says you still have can mean you spend less time than normal with your partner, or that you are not able to
a right to know about your medical situation and have your opinions heard. Your health do as many things together as you would like to.
care team will take your views into account, and follow what you want to do, if they think
it is reasonable. It can be helpful to make the most of your time together – either with other family/
whānau and friends, or on your own as a couple without other people. You can still build
Visit the YouthLaw Aotearoa website for advice on medical decision-making and your a strong, healthy relationship, even if you can’t see each other in person as often. Staying
legal rights (see the list of useful websites on page 83). connected by phone, video calls, texts, emails and social media can all help.

Talking to children
Living situations
Living alone with a blood cancer or blood condition
You might have younger family/whānau members around you – brothers, sisters, cousins or
your own children – who realise that something has changed. Children are often very aware Living alone can be great – it gives you a sense of freedom and independence and means you
when things are different, and it can be helpful to explain your diagnosis in simple language can live the way you want to. However, living alone can get tricky if you are diagnosed with a
that they can understand. blood cancer or blood condition. Being unwell can make you feel alone, and the practical side
of living on your own (such as grocery shopping and cleaning) can be more difficult.
Brothers and sisters, especially those younger than you, can find it very difficult to cope with
your blood cancer diagnosis. It is normal for them to have lots of different feelings. They may Feeling like you have to change your living situation on top of everything else can be
feel afraid of what is going to happen or upset that you feel unwell. The attention that you overwhelming. Some people prefer to temporarily move home with family/whānau while
need from the rest of your family/whānau can make siblings confused and resentful. Many they are having treatment and recovering. For others, this is not an option – if you are in
families say that the experience of cancer really brings them closer and makes them realise this situation, there is support available to help you through your treatment. Ask your AYA
how lucky they are to have each other. keyworker, doctor or nurse if you can speak to a social worker who will be able to help you.

If you have young children in your life that are aged If you are living alone, it is important that you:
between 5–12 years, LBC has support programmes • Put together a list of emergency contacts in case you suddenly become unwell.
available to them. There are also picture books which • Let friends, family/whānau and neighbours know about what could happen so if you call
can help explain conditions such as lymphoma or them in an emergency, they will know what to do and who to call.
leukaemia, and treatments such as bone marrow
transplant. Your doctors and nurses will also give you a list of 24-hour emergency contact numbers to
More
information use if you become unwell. It is okay to ask for help, and to accept help when it is offered –
Speak to your LBC Support Services Coordinator which can sometimes be difficult when you have previously lived so independently.
is available online
for more information.
Some family/whānau members and friends may find it difficult to talk openly about your
blood cancer or blood condition, but would be happy to help in more practical ways, such
as doing your shopping, cleaning your house and driving you to doctors’ appointments.
Accepting help offered may make living alone easier and more manageable. Being
independent is about finding the right balance between acknowledging when you need
support and looking after yourself.
60 61
 Life with cancer

Living with others University halls/halls of residence

Living at home Living away from home in a hall of residence provides a combination of independent living
and flatting. You get a bit more independence but with more people around you, which can
Living with your family/whānau can provide both emotional support and help with
feel less isolating – especially if you are in a new city. If your hall provides food, this can also
practical things like cooking, cleaning and transport. Having supportive people in your
be really helpful if you do not yet have the energy to cook for yourself every day.
household can make it easier for you to focus on yourself, your treatment and getting
well. It is up to you who you tell about your blood cancer diagnosis. You may want to let your
residential adviser (RA) or hall manager know about what is going on so they can best
However, not having your own space or feeling like you have less independence can be
support you, and help you with any special requirements (such as needing a special
challenging. It is normal for some parents to feel overprotective, or to be processing
diet, or needing to take precautions against infection). It is a good idea to have at least
their own emotions. It can be really helpful to have open communication and be honest
one person who is aware of your diagnosis or treatment, in case you become unwell and
about what you need – whether it’s a bit more help with day-to-day things, regular
need urgent medical care. Provide any roommates and your RA with a list of important
chats, or a bit of space and alone time.
contacts such as the hospital and your family/whānau.
Siblings can be a good source of support and entertainment when you are having
It is also a good idea to enrol with a local GP or university health centre and let them
treatment and recovering. However, they may struggle to cope with life changes or
know about your medical history, particularly if you are living in a different place to where
their emotions when it comes to your diagnosis. There is support available for siblings
you had your treatment.
of people with blood cancer. If your sibling is 5–12 years old, speak to your LBC Support
Services Coordinator about Kids Club support groups. If your sibling is 13–24 years old,
CanTeen is another charity that can support them.
Work and education
Flatting Secondary school
Having flatmates can be helpful if you are diagnosed with a blood cancer, but Your treatment is likely to change your daily routine. It can affect how much time or effort
treatment and cancer can also make flat life more complicated. Your flatmates may you can put into school or college work, and you may need to take some time off. If you
not be familiar with blood cancer or treatments, and they may need you to tell them need to put school on hold – that’s okay. Someone will need to talk with your school about
what support you need from them. what is going on and any special requirements you may have. This person can be:

The most important thing is to keep talking to your flatmates. You don’t have to tell • You
your flatmates all the details of your diagnosis if you don’t want to, but you may want
• A family/whānau member or partner
to tell them something – especially the parts that will affect them. You may need to
follow a slightly different diet, and your flatmates may need to be extra careful about • A specialised support nurse.
hand hygiene, avoiding infection and keeping themselves well. It is important you talk
The person they talk to at the school can be a:
to your flatmates if you need them to do things differently.
• School nurse, counsellor or pastoral care teacher
Communicating about shared flat responsibilities such as rent, bills, grocery shopping • Class or house teacher, or a teacher you feel comfortable with
and cleaning is important for keeping flat relationships happy and healthy. If your • Dean or department head
treatment means you can’t do your usual household tasks such as cooking or cleaning,
• Personal tutor.
it is better to let your flatmates know as soon as possible, including how long you think
it will last for. You may be able to make a plan together, such as picking up extra jobs
on the days you feel well, or hiring a cleaner on occasions. You can decide who you want to know about your illness. However, it is worth thinking
about letting the people know who can help make your life easier at school. For example,
Treatment can be financially stressful, and sometimes it can be hard to pay rent and if there is a rule about not wearing hats, it would be useful to let the teachers know why
bills. If this is the case, speak to your AYA keyworker or social worker to see if there is any you would like to wear one. One of the most important things your school needs to know
support available. is that due to your cancer treatment your immune system may be low, making it easier for
you to catch infections and harder to fight them off. You should stay away from school if
any students have chickenpox, measles, shingles, the flu, Covid-19 or a bad cold.

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 Life with cancer

You can discuss with your teachers/tutors a plan for your education while you are being Work
treated for blood cancer. There might be some options for getting your schoolwork
done that work for you, including: It is hard to know before treatment starts how it will affect your job and your ability to
work. Some people have no problem continuing to work full or part time, while others
• Being sent work to complete at home on your own need to stop working altogether in order to focus on their treatment and recovery.

“
• Joining lessons virtually online
• Having a flexible timetable so you only have to go to school for the most important I had to stop working – and
lessons, or when you feel that you are able to
that was a big shock! In the
• Enrolling in a regional health school. You may be eligible if you miss more than 10 days movies, people with cancer
of school due to hospitalisation, or 40 days in a year – speak to your AYA keyworker still work and do activities.
about whether this is an option.
But I had to isolate, and I

Throughout the entire treatment process, you are still part of your school, even if you
or movies.
“
couldn’t even go to the mall
are not there all the time. Your teachers should provide you with schoolwork if you feel
up to doing it. School friends can provide a great support network and can often help if
you need a hand with your studies. Maya
If you miss a lot of school you may be asked to repeat the year, although this is avoided
whenever possible. Keeping in regular communication with your school can help get you
the support you need and identify any problems early.
Often the biggest concerns for work are telling
your employer that you have a blood cancer and
worrying whether this will affect your job or pay.
University or polytechnic Most employers are supportive.
Going to polytech or uni can be a big life change, particularly if you have just had
treatment for blood cancer. Some people find they want to be closer to their family/ If you have any questions regarding employment More
whānau after their treatment and choose to study closer to home, while others see issues, contact Employment New Zealand or information
the Citizens Advice Bureau (see the list of useful is available online
going away from home as a chance to regain independence. Either way, it doesn’t have
to be a scary time – it can be exciting too. websites on page 83) – they will be able to advise
and guide you through your concerns.
Treatment for a blood cancer or blood condition will change your day-to-day routine
but that doesn’t mean you will have to give everything up. University timetables are It can be helpful for you to talk to your employer about your blood cancer and treatments.
often flexible, and lots of the study can be done on your own and at your own pace. You can explain how long you think it will last and what tasks you will be able to do. This will
It is important to keep your tutors informed so that they can give you the best support help them support you in taking time off or working more flexibly if this is possible. Letting
possible. The student union and student disability services can also be good places to your colleagues know what is happening can make it easier for them to support you too.
look for advice and support.
It can be helpful to keep in touch with colleagues from work and let them know how you
If you need a break from study, it is usually fairly easy to take a year off and pick your are – a quick email or phone call can help keep you connected and make you feel part of
course up again the next year. Lots of students take a year off to travel overseas or the team.
spend a year working – so taking a year off for your health is often very achievable, and
there will be others in a similar situation. If you are having issues with your employment or you have money problems, speak to your
AYA keyworker or hospital social worker. You may be entitled to some supports and benefits.
LBC has a great section on their website with detailed information about employment
rights, flexible working entitlements and returning to work. Use the QR code above to
access these resources online.

64 65
Summary
Having strong feelings and experiencing
anxiety, loneliness or depression can be
really common following a blood cancer
diagnosis – there is help and support
available to you if you need it.

Different coping strategies can

be helpful to process and move
through these feelings
(see page 58).
?
Your support needs might be
different based on your living

Diagnosis and treatments

may have an impact on your
work and/or study – check
if it is possible to make
Life with cancer

situation – it can be helpful to check

who is in your support network, and
how your support needs can be met.

changes to your schedule, or

if you can take a break if you

?
need to.

Your relationships with family/

whānau and friends may change
following your diagnosis – keeping
open communication is really
important to ensure you continue
to get the support you need.

66 67
Questions and notes

68 69
 Beyond cancer

Beyond cancer
Ki tua i te mate pukupuku
You might hear the word ‘survivorship’ used to describe life with
and after cancer. Survivorship means living with cancer. It starts
when you are diagnosed and includes your treatment, recovery
and life after treatment. When you are diagnosed, your health
care team are focussed on treating your blood cancer or blood
condition as well as possible, but they also want to make sure you
have a good quality and enjoyment of life.

Everyone’s experience is different. For some people, having a blood cancer or

blood condition might be ongoing – with long-term treatment or management
needed. Some might have side effects from their treatment which need ongoing
management or regular check-ups, while others go into long-term remission without
any major side effects. The mental, social, emotional and spiritual effects of a
diagnosis and treatment can also last after treatment stops. Some people feel a bit
anxious or isolated after stopping treatments or hospital visits – this is very normal.

Finding a new normal

It can be tough going back to ‘normal life’ after a big life change like a blood cancer
diagnosis. You might feel pressure to go back to the way things were, but inside you
might feel very different. You have had a lot of new experiences and have probably
learnt more about yourself and what you want from life. It is okay to feel this way.
Don’t feel like you have to go back to the way things were or do the same things you
used to do if they don’t seem like ‘you’ anymore – try some new things!

Relationships with family/whānau and friends

You may find that your relationships with family/whānau and friends change once
treatment is finished. Some people feel closer because of what they have been
through together. Others find the relationships more difficult as they try and find a
new normal together. It is important to understand that different people will react in
different ways – and there is no correct way to react. The most important thing is to
keep openly and honestly communicating with each other.

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 Beyond cancer

Dating Sexuality and relationships

Changes in body image and self-esteem can occur as a result of treatment and may
Dating can be difficult – with or without a blood condition! A blood cancer or blood impact relationships. Physical changes from the blood cancer or treatment can be
condition can make things even more complicated, especially if you are struggling difficult to come to terms with. You may also notice you want sex less often or are anxious
with body image, confidence or fear of relapse. If you are finding dating difficult, it is about having sex. See page 47 for more information on sexual-wellbeing and page 59 on
important to remember that you are not alone and many others with a blood cancer relationships.
have felt this way. Talking to people you feel comfortable with and allowing time to
recover from your blood cancer experience can be helpful. Menopause
Some things that can help are:
Early menopause (hormonal changes that result in your periods stopping) is a potential
• Getting involved with activities to meet other people and to practice your social skills side effect of some blood cancer treatments. Hormone replacement therapy may need
• Attending support groups with other young adults to share advice and experiences to be considered to prevent side effects such as osteoporosis. See page 48 for more
information on menopause.
• Checking out the online support available from reputable websites (see list of useful
websites on page 83)
Fatigue after treatment
• Counselling, and talking to your doctor or nurse or someone you feel comfortable with.
Physical, mental or emotional fatigue after finishing
treatment is really common. How long and how intense
When should you tell someone you are dating that you have/had a your fatigue is will vary but it is important to find ways to
blood cancer? cope, such as through exercise and meditation. See page More
information
44 for more information on fatigue.
There is no perfect time to tell someone you have or have had a blood cancer or is available online
blood condition. It will depend on how you are feeling about your situation, and how
comfortable you feel with that person. Some people prefer to talk about it straight Late effects
away, as they consider it a big part of their lives. Others prefer to wait until they know
someone better, or take a case-by-case approach and tell them when the moment Late effects are health conditions that appear long after diagnosis and treatment –
feels right. Whatever you decide, it is always good to do what feels best to you. sometimes weeks, months or years later. These will vary depending on the type of blood
cancer and treatments.
How to tell someone that you have/had a blood cancer
Discussing a care plan will ensure that any long-term effects are managed. It is good to
It can be helpful to think about what you want to say ahead of time – being prepared know who to speak to if you have any medical concerns or think you are experiencing
may help you to feel more confident about the conversation. It is also a good idea some late effects. Depending on how long it has been since finishing treatment, you
to ensure you set aside enough time for your talk, so you can say as much or as little might contact your haematologist or nurse specialist, or it might be better to go to your
as you need to. Depending on your relationship, you might find that writing a letter GP. Examples of some late effects are secondary cancers, heart complications, thyroid
helps you to think about what you would like to say. It can also give the other person problems and difficulty with concentration and learning.
time to respond to your letter.

Unfortunately, some people may react badly to your news. This may be upsetting,
or make you feel as if you have done something wrong. It is important to remember
that you haven’t done anything wrong, and you cannot control other people’s
reactions. Some people may also surprise you and be more supportive and
understanding than you were expecting.

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 Beyond cancer

Drinking lots of alcohol, or drinking for a long time, is known to lower the body’s
Keeping yourself healthy immunity. This could mean a difficult and longer recovery, meaning more time in
Exercise hospital. You will also likely have a lower tolerance for alcohol. Having the occasional
glass of beer or wine might be okay, but this will vary from person to person – ask your
Keeping active is one of the best ways to help you feel better during your treatment. doctor if it is safe for you to have any alcohol during your treatment.
Blood cancers and their treatment affect people differently, and the amount of exercise
you are able to do will depend on your condition, treatment and how your body responds It is always best to be open and honest with your doctor and health care team. Anything
to it. Gentle daily exercise (such as walking) is a great way to keep active and is better for you tell them will be confidential. Your health is a priority and they will only have your
you than sudden bursts of activity. When you are having treatment, your energy levels will health and safety in mind.
probably go up and down – so listen to your body. Some things to remember are:
There is help available if you have been taking drugs or drinking lots of alcohol and you
• Don’t exercise if it’s really hot – exercise in an air-conditioned room if you can think it might be hard to stop. Speak to your doctor, nurse, AYA keyworker or GP, or the
• Don’t exercise if you have a fever Alcohol Drug Helpline (0800 787 797 / alcoholdrughelp.org.nz) for more information and
support.
• If you have any shortness of breath, stop exercising immediately
• If you feel sick or dizzy, stop exercising immediately

“
• Only use good-quality exercise equipment to reduce the risk of injury.
I was so nervous telling my
Avoid doing any power lifting or heavy weights if your chemotherapy included doctor that I used recreational
anthracyclines. Anthracyclines are a group of very powerful chemotherapy drugs that can drugs. I thought they would tell
affect your heart. Ask your doctor whether this applies to you.
me off but they were so casual
If your platelet count is low you will bleed and bruise easily, so sports where you are likely and helped me understand
to get injured are not a good idea. If you want to take part in energetic sports such as that it could interact with my
rugby, soccer, netball, basketball or mountain biking, you should check with your doctor
or nurse first.
chemo. To be honest it was a
relief to get it off my chest!
“
You are likely to have a lower white blood cell count than normal, which means you are
at more risk of getting infections. If you have a low white blood cell count, you may need Rachel
to avoid swimming pools and spas as they pose a high risk of infection. You may also
be advised not to swim if you have a central line in place. If you are unsure, check with
your doctor or nurse. If you would like further information on exercising during cancer
treatment, you can ask to be referred to a hospital or community physiotherapist. Smoking and vaping
Smoking causes damage to your lungs, mouth and throat, and also means your body gets
Alcohol and drugs less oxygen. This can lead to other health conditions and cancers such as emphysema
If you usually consume alcohol or take recreational drugs, you will need to take a break (a lung condition), heart disease, stroke and lung cancer. Vaping can also cause lung
from them during your treatment. This is because alcohol and drugs are broken down damage. When you are diagnosed with a blood cancer or blood condition, it is a good
by your liver and kidneys, but so are chemotherapy and other treatment medications opportunity to stop smoking to put your body in the best possible position for your
– so taking them together can cause damage and extra stress on your body. Some treatment. It will be difficult, but there is a lot of help available. Speak to your doctor,
chemotherapy medication can interact with alcohol and drugs, which can make your side nurse, AYA keyworker or GP, or visit Quitline (quit.org.nz or 0800 778 778) for more
effects worse, and also create new ones. information and support.

Drugs can also mask serious symptoms and side effects of your treatment, such as All New Zealand hospital buildings and grounds are smoke free you will not be allowed to
brain complications, infection and pain. Smoking or inhaling any drug increases risk smoke or vape anywhere onsite. You may be able to leave for a short time to smoke if it is
of fungal infections in your lungs, which can create serious complications with your safe to do so, or your health care team can provide you with alternatives such as nicotine
treatment. gum and patches.

74 75
 Beyond cancer

Tattoos and piercings What about travelling?

It is safest to wait until after your treatment has completely finished before getting a new
tattoo or piercing. Both tattoos and piercings break the skin barrier, and therefore have If you had plans to travel overseas or go on an OE, you may have had to put those plans
a risk of: on hold due to your diagnosis. Once you have finished your treatment, it is a good idea to
talk to your doctor about the best time to begin planning to travel again. It is important
• Infection that you attend any follow-up appointments and have any necessary tests once your
treatment is finished – your doctor will be able to tell you when these are likely to be.
• Bleeding
• Scarring Depending on your blood cancer and treatment, you may need to choose where you will
• Reactions, e.g. to the ink or metal used. travel very carefully. If you want to travel to places that require vaccinations, it is best
to discuss this with your doctor. There are some live vaccines which you should not have,
When your immune system is low (due to a blood cancer or treatment) it is harder for such as yellow fever, typhoid and oral polio.
your body to fight infection and takes longer to heal from a wound, which increases the
risk of infection further.
Will I be able to get insurance?
If you are planning on getting a new piercing or tattoo, your medical team will be able to Having a blood cancer or blood condition can make it more difficult to get life or travel
tell you when the best time is, to minimise infection risk. It is important that any tattoos insurance because of your health history. You do need to tell your insurer about your
or piercings are done correctly and professionally, in a safe and clean environment with condition and treatment when applying for insurance, otherwise the policy becomes
proper aftercare to reduce the risk of infection and other complications. void (doesn’t count) and they will not have to pay any claims you make. Larger and more
established insurance companies are more likely to be able to provide insurance for you
If you have existing tattoos and piercings, it is a good idea to let your medical team know
but may cost more. Speak to your LBC Support Services Coordinator if you need more
ahead of any scans or procedures. Piercings will often need to be temporarily removed
support regarding finding insurance.
prior to a scan, and special precautions may need to be taken in the case of tattoos
(e.g. ahead of an MRI).
Fear of relapse
Sun protection
It is normal to feel anxious or worried about your blood cancer coming back (relapse).
Chemotherapy and radiotherapy cause changes to your skin, making it much more This anxiety can get worse before a new scan or a follow-up appointment. The best
sensitive to the sun. To protect your skin, it is a good idea to: thing you can do to reduce the chance of your cancer coming back is to follow the
follow-up plan your health care team gave you when you were discharged, e.g. having
• Cover your skin recommended blood tests and going to clinic appointments. Your GP is also a good
• Stay in the shade when able person to talk to if you have medical concerns but are no longer seeing the hospital team.
• Wear a sunhat and sunglasses
If you are having lots of anxiety, it can be helpful to talk to someone about it, such as
• Use at least an SPF 30+ sunblock when you go outside.
a trusted friend or family/whānau member, a counsellor or your GP. Attending support
New Zealand sun is particularly strong, and you can burn even on a cloudy day, or in groups can also be a really good way to get your feelings out in the open. It is important
winter. It is also important that you do not use sunbeds to tan – the intense UV light will to recognise how you are feeling and be honest with yourself – you don’t need to pretend
cause more damage to your skin. you feel fine or hide your fear or anxiety

Immunisations
After chemotherapy or a stem cell transplant, your doctor may advise you to get some
of your childhood immunisations (vaccinations, injections) again. This is because the
“ I never even knew what a blood cancer was, let alone
thinking I would have one. I kept making excuses for my
symptoms and was in denial. And now that I’ve finished
immunity that you gained from your childhood vaccines may be lost during treatment. treatment and am in remission - every little symptom,
“
Most people are also recommended to get a yearly flu vaccine and full Covid-19 I immediately think my cancer is back.
vaccination after treatment. Check with your doctor to find out which immunisations you
should get, and when you should get them. Luke
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 Beyond cancer

If cancer returns
Sometimes cancer can come back. This usually happens because a small number of cancer
cells weren’t completely removed or destroyed by the treatment. It doesn’t mean you have
done anything wrong, and it doesn’t mean you weren’t given the right treatment – it just
Summary
means some of the cells managed to survive. When you are told about a cancer relapse, it It might take some time to adjust
is normal to feel a whole range of emotions such as anger, shock, guilt or fear – these are all
very normal feelings. You might feel the same as you did when you were first diagnosed, or
to the new ‘normal’ following
you might have some new emotions. It is okay to feel however you are feeling. treatment for a blood cancer or
blood condition – don’t feel pressured
Just like when you were first diagnosed, your doctors will talk to you about your diagnosis,
prognosis and treatment options. It is important to have these conversations with your to slot right back into your old life.
health care team, so you can make the best decisions for you. Some things you may
want to consider are:
Late effects are side effects Sun protection, regular
• Your prognosis (how the disease is expected to progress) that can appear months or exercise, immunisations and
• How treatment will affect your quality of life years after treatment. If you limiting alcohol and drugs are
• Long-term and short-term side effects are concerned about anything, all helpful in keeping healthy
• How you tolerated treatment last time speak to your health care following treatment.
• How you feel about having more treatment. team or your GP.

If treatment doesn’t work It is normal to feel some Sometimes there are

Sometimes, despite trying all the best treatments, some people cannot be cured. Being anxiety or fear about no treatment options
available – if this is the
told your cancer is incurable or is not responding is awful and unfair. There is no wrong or cancer returning –
right way to process this news, and there is no wrong or right way to feel about it. You are case, having trusted
allowed to deal with this news however you need to.
talking to a trusted people you can talk to
person can be helpful. is really important.
It is really important to have people you trust who you can talk to. This may be friends or
family/whānau, but sometimes it might be easier to talk to someone outside the family, like Ask your medical team
a counsellor. You only need to share the information you want to share, when you feel ready. Sometimes cancer does return – any questions you
you may be offered further have. You may also be
You may be referred to a service called palliative care. There are palliative care teams in
treatment if this is the case. referred to the palliative
the hospital and in the community. Palliative care is really important to get any symptoms
care team to help you
under control, to help you enjoy the life you have left. They can also help support your
mental and emotional well-being and support you through feelings of shock and grief.
manage any symptoms
or emotions.
It is important that you are as involved in the decisions around your care as you wish to
be. You may have lots of questions – write them down, and don’t be afraid to ask. Your
doctors, nurses, AYA keyworker, social worker and family/whānau may be able to help you
find the answers you need. Examples of some questions you might have are:

• Why did this happen?

• How do you know there are no more treatments?
• How long do I have to live?
• Can I get a second opinion?
78 79
Questions and notes

80 81
 Appendices

Appendices Ngā Āpitihanga

Questions and tips Questions to ask your doctor Questions to ask your nurse Useful websites
for your hospital • What kind of blood cancer or blood
condition do I have?
• What are the common side effects of
the treatment? What can I do to reduce
and resources
appointments • How does the blood cancer or blood them? Useful websites and resources
condition affect my body? • How are the drugs administered?
Being told you have a blood cancer or • In your opinion, what is my prognosis? Leukaemia & Blood Cancer
blood condition can come as a huge • Can my parent/sibling/partner stay with New Zealand (LBC)
• What are the pros and cons of
shock and be really upsetting. When you me if I have to be in hospital overnight? www.leukaemia.org.nz
treatment?
are processing all your emotions and new • Will my friends be able to visit? Alcohol Drug Helpline
• What if I decide not to have treatment?
information in the moment, it can be www.alcoholdrughelp.org.nz
• Are there other treatment options for me • Can I change the timing of my
hard to remember to ask the important appointments and treatment? AYA Cancer Network Aotearoa
to consider? They have a great section of
questions you want the answers to. • How long will treatment take? • Who do I contact if I feel unwell? resources for young people.
• How long will I be in hospital? www.ayacancernetwork.org.nz
The following tips can help you get the • Will this line of treatment affect my Citizens Advice Bureau
most out of your appointments: fertility? What can be done to protect it? Questions to ask your social www.cab.org.nz
• Who will be in charge of my treatment worker Cancer Society NZ
• Bring a support person with you – www.cancer.org.nz
and care?
another pair of ears is very helpful, not • Am I entitled to any government
• Do I have to stay in hospital for Canteen
to mention company in the waiting room benefits? CanTeen Connect app – they have
treatment?
and help with driving and parking! • Are there any other support a big range of supports and
• Will I be able to continue studying/
• Take a notebook and make notes organisations I should be linked in with? resources for young people.
working throughout treatment? www.canteen.org.nz
• Ask your doctor if they are happy for you • Is there anything I can do to help me get • Who can I speak to if I need to travel for
Depression and Anxiety
to record the conversation on your phone better? Should I eat differently? Should I treatment? www.depression.org.nz
or a recording device (it is important to exercise? Employment NZ
ask first) • What are your thoughts about www.employment.govt.nz
• Ask as many questions as you need to complementary therapies? Are there any Look Good Feel Better NZ
• Write a list of questions before your you would advise against? www.lgfb.co.nz
appointment (and bring the list with you). • Will drinking alcohol affect my Manatū Hauora Ministry of Health
treatment? Can I go to parties/out www.moh.govt.nz
clubbing? Ministry of Primary Industries
• Can I have sex with my partner? Are Booklet on food safety when you
there any do’s and don’ts? have low immunity
• Can I be around animals and pets? www.mpi.govt.nz/food-safety-home
• Will I have any long-term effects from National Travel Assistance Scheme
Te Whatu Ora Health New Zealand
the cancer or treatment?
tewhatuora.govt.nz/our-health-system
• If the treatment works, what are the
Quitline
chances that the cancer will return? www.quitline.org.nz
• Will my lifestyle be affected by my
Youth Law
cancer experience? www.youthlaw.co.nz
• Will I be able to work full-time, have kids,
Youthline
travel etc? www.youthline.co.nz

82 83
 Appendices

Glossary of terms Cytogenetic tests. Tests

commonly carried out on
samples of blood and bone
marrow to detect chromosomal
Immature. Not fully developed,
e.g. a cell that is immature is still
at a baby stage. It will mature (or
develop) over time to an adult
Lymph nodes or glands. Small
structures found throughout
the body, e.g. in the neck, groin,
armpit, chest and abdomen,
abnormalities (things that are stage. which contain both mature and
wrong with the chromosomes) immature lymphocytes. There
associated with disease. This Immune suppression. The use of are hundreds of lymph nodes
Alopecia. Hair loss, which can B-lymphocyte. A type of Chemotherapy. Single drugs information helps in the diagnosis drugs to reduce the function of throughout the body.
occur temporarily following white blood cell that produces or combinations of drugs used and selection of the best the immune system.
treatments for blood cancer and antibodies to fight infection. Also to kill and prevent the growth treatment. Lymphatic system. A large
conditions such as chemotherapy. called a B-cell. and division of cancer cells. Immune system. The body’s network of vessels that carries
Although aimed at cancer cells, Digestive system. The system in defence system against infection a fluid called lymph through
Anaemia. A reduction in the Bone marrow. The tissue found chemotherapy can also affect your body that deals with food. and disease. almost all tissues in the body.
haemoglobin level in the blood. at the centre of many flat or rapidly dividing normal cells Starts at your mouth and ends at Lymph moves through the body
Haemoglobin normally carries big bones of the body. The bone and this is responsible for some your bottom. Turns food and fluids Immunocompromised. When the in a similar way to blood. The
oxygen to all the body’s tissues. marrow contains stem cells from common side effects including into fuel for your body. function of the immune system is lymphatic system is part of the
Anaemia causes tiredness, which all blood cells are made. hair loss (alopecia) and a sore reduced. immune system.
paleness and sometimes mouth (mucositis). Most of the Disease progression. This means
shortness of breath. Bowel. Also known as intestines side effects of chemotherapy are that the disease is getting worse Immunoglobulin. See Antibodies Lymphocytes. Specialised white
or guts. After your stomach has usually temporary and reversible. despite treatment. in this glossary. blood cells involved in defending
Antibiotics. Drugs that kill or finished with the food you eat the body against disease and
stop the growth of bacteria, it goes into your small bowel, Chromosomes. Your body is made DNA (deoxyribonucleic acid. Immunophenotyping. A infection. There are three types
e.g. penicillin. which absorbs nutrients that the up of cells. Inside most cells are The cell’s hereditary material specialised laboratory test used to of lymphocytes: B-lymphocytes
body needs. What is left after chromosomes which, under a which contains instructions detect markers on the surface of (B-cells), T-lymphocytes (T-cells)
Antibodies. Naturally produced this moves into your large bowel microscope, look like threads. for development, growth and cells. These markers identify the and natural killer cells (NK cells).
substances in the blood, made and eventually moves out of your These threads contain hundreds reproduction. DNA is located origin of the cell.
by white blood cells called body as waste, known as a bowel to thousands of genes. Genes in nearly every cell of the Lymphoid. Term used to describe
B-lymphocytes or B-cells. motion or poo. determine things like what colour human body. DNA is found in Incurable. A disease or illness a pathway of maturation of blood
Antibodies target antigens on your hair and eyes are and how chromosomes. that is unable to be completely cells in the bone marrow. White
foreign or abnormal cells such as Cancer. A malignant disease your body develops. You have 23 removed or treated. Unable to be blood cells (B-lymphocytes and
bacteria, viruses and some cancer where abnormal cells grow, divide pairs of chromosomes and you Foetus. An unborn child. cured. T-lymphocytes) are derived from
cells to destroy them. and accumulate uncontrollably get half from your mother and the the lymphoid stem cell line.
and can invade other tissues other half from your father. Genes. Genes are made up of Laparoscopy. An operation done
Antiemetic. A drug which from the original site where the DNA. Each chromosome contains through a small keyhole incision in Lymphoma. A cancer
prevents or reduces feelings cancer started. Cancer cells can Chronic. An illness or disease many genes. Every person has two the skin, often assisted by camera characterised by the uncontrolled
of sickness (anti-sickness) or grow and multiply to form a that persists for a long time or copies of each gene, one inherited views. The spleen and gallbladder multiplying of lymphocytes.
vomiting. lump or swelling (a tumour). Not is constantly recurring (coming from each parent. are often removed using this Lymphoma cells can be found in
all tumours are due to cancer; back). technique. lymph glands, spleen and other
Antigen. A substance that can tumours that are not cancer are Genetic analysis. Blood tests tissues. It can spread to involve
stimulate white blood cells to called non-malignant or benign Complementary therapies. screening parts of your genetic Leukaemia. Cancer of the blood the bone marrow and blood and
get rid of the antigen or attack it tumours. Therapies used alongside your code (chromosome and molecular and bone marrow characterised then look like leukaemia. There
directly. This is called an immune medical treatment that can tests) to identify the genetic by the widespread, uncontrolled are many different subtypes of
response. Also see Immune system Cannula. A plastic tube that is help you feel better or help you features of your blood cancer and production of large numbers of lymphoma, classified in two main
in this glossary. inserted into a vein (intravenously cope with your diagnosis and help you plan your treatment. abnormal and immature blood categories: Hodgkin lymphoma
or IV) to allow fluid to enter the treatment, e.g. massage, yoga. cells. These cells crowd the bone and non-Hodgkin lymphoma.
Anxiety. An ongoing worry or bloodstream. Granulocyte colony-stimulating marrow and spill out into the
concern that doesn’t go away. Complete remission. Anti-cancer factor (GCSF). A growth hormone bloodstream. Malignancy. See Cancer in this
Feelings of worry that a person Central line. Also known as a treatment has been successful given to stimulate the bone glossary.
does not seem to be able to central venous catheter (CVC) and so much of the disease has marrow to produce certain types Leukaemic cells. Abnormal cells
control or seem greater than they or central venous access device been destroyed that it can no of blood cells. It is often used to which multiply in an uncontrolled Markers. A gene or DNA sequence
should be for a situation. (CVAD). A tube passed through longer be detected using current treat neutropenia, or before a manner, crowding out the bone with a known physical location,
the large veins of the arm, neck, technology. stem cell harvest for a stem cell marrow and preventing it from and where it has come from.
Biopsy. A small sample of fresh chest or groin and into the central transplant. producing normal blood cells. In genetics, markers act as
tissue, e.g. lymph node or bone blood circulation. It can be used CT scan, also known as a CAT These abnormal cells also spill chromosomal landmarks. They
marrow, removed for testing in a to take blood samples, or give scan (computerised axial Haematologist. A doctor who out into the bloodstream and can are used to trace or identify a
laboratory, to establish the exact IV fluids, blood and medications tomography). A specialised scan specialises in the diagnosis and build up in other organs. specific region of a gene on a
diagnosis or to monitor treatment including chemotherapy. that produces detailed 3D images treatment of diseases of the chromosome.
response. of cross sections of the body. blood, bone marrow and immune Lumbar puncture. A procedure for
system. taking a sample of the fluid that Menopause. The time in a
Blood count. Also called a full Cure. This means that there is no surrounds your brain and spinal woman’s life when her period
blood count (FBC) or complete evidence of disease and no sign Haematopoiesis (or cord to look for leukaemia or stops and she is no longer able
blood count (CBC). A routine of the disease reappearing, even haemopoiesis). The processes lymphoma cells, using a long thin to have children. Hormones
blood test that measures the many years later. involved in blood cell formation. needle inserted into your lower produced by the ovaries decrease
number and types of cells back/spine. A local anaesthetic is after menopause. Also see Ovaries
circulating in the blood. given to numb the area. in this glossary.
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 Appendices

Mucositis. An inflammation of the

lining of the mouth, throat or gut.
Power of attorney. One person
gives another person permission
to act on their behalf, such as
Stem cells. Primitive cells that
can give rise to more than one
cell type. There are many different
Acknowledgements
Myeloid. A term used to describe making decisions about their types of stem cells in the body.
a pathway of maturation of
blood cells in the bone marrow.
health or operating their bank
account. You usually see a lawyer
Bone marrow (blood) stem cells
have the ability to grow and
Leukaemia & Blood Cancer New Zealand (LBC) would like
Red blood cells, white blood
cells (neutrophils, eosinophils,
to arrange this. produce all the different blood
cells including red blood cells,
to thank everybody who has helped in the development
basophils and monocytes) and
platelets are derived from the
Prognosis. An estimate of the
likely course of a disease.
white blood cells and platelets. of this booklet: those who have experienced a blood
myeloid stem cell line.
Psychological. Relating to your
Stem cell transplant. Also known
as bone marrow transplant,
cancer or blood condition, their personal supporters,
Neutropenia. A low number
of circulating neutrophils, an
mental and emotional well-being. haemopoietic stem cell transplant
or peripheral blood stem cell
health care team members and LBC staff.
important type of white blood Radiotherapy. Also known as transplant.
cell. Neutropenia is associated radiation therapy, it involves the
with an increased risk of infection. use of high-energy X-rays to kill Supplements. Tablets or liquids
cancer cells and shrink tumours. you take as well as the food
Neutrophils. Neutrophils are the you eat. Supplements include
most common type of white blood Red blood cells. Cells that vitamins, minerals, herbs and
cell. They are needed to fight transport oxygen from the lungs other plants.
effectively against infection. to all the cells in the body.
T-lymphocyte. A type of white
Oncologist. General term used Relapse. The return of the original blood cell involved in controlling
for a specialist doctor who treats disease. immune reactions. Also called a
cancer, e.g. medical, radiation, T-cell.
surgical oncologist.

Ovaries. Small organs that

Resistant or refractory disease.
This means that the disease is not
responding to treatment.
Tumour. An abnormal mass
of cells which may be non-
Leukaemia & Blood Cancer
New Zealand
produce and then release eggs malignant (benign) or malignant
into a woman’s reproductive Rigors. A chill (feeling cold), (cancerous).
system and produce female usually with shivering, at the
hormones. onset of having a high fever Ultrasound. Pictures of the body’s

Partial remission. The tumour

(temperature). internal organs built up from the
interpretation of reflected sound LBC is the leading organisation in New Zealand
shrinks to less than half its
original size after treatment.
Spleen. An organ that
accumulates lymphocytes, acts
waves.
dedicated to supporting patients and their families/
In people with leukaemia, this
means that the proportion of
as a reservoir for red blood cells
for emergencies, and destroys
Urinary tract infection (UTI).
An infection in any of the parts of whānau living with leukaemia, lymphoma, myeloma,
blast cells in the bone marrow
has been reduced following
red blood cells, white blood cells
and platelets at the end of their
your body that make or store urine
or take urine out of your body, e.g. MPNs and related blood conditions.
treatment, but not necessarily lifespan. The spleen is found high bladder or kidneys.
below 5%. There are still some
leukaemic cells present.
in the abdomen on the left-
hand side. It is often enlarged White blood cells. Specialised
Since 1977, our work has been made possible through our fundraising
in diseases of the blood or bone cells of the immune system events and the generous support we receive from individuals,
Petechiae. Tiny purple or red spots marrow. that protect the body against
on the skin caused by bleeding infection. There are five main companies, trusts and grants.
into the skin. They commonly Splenomegaly. Enlargement of types of white blood cells:
appear in clusters and may look
like a rash. They are usually flat
the spleen. neutrophils, eosinophils, basophils,
monocytes and lymphocytes.
LBC is committed to improving the quality of life for patients and
to the touch and don’t lose their Stable disease. When a disease is their families/ whānau living with these blood cancers and conditions
colour when you press on them. stable, it is not getting any worse
or any better with treatment. by providing patient support services, investing in and supporting
Plasma. A light-yellow coloured research, providing information, raising awareness and advocating
fluid in the blood that carries Staging. A description of how far
blood cells, nutrients, hormones a lymphoma has spread. Stage 1 on behalf of patients.
and proteins to different parts of disease is localised whereas stage
the body. 4 disease has spread beyond the
lymphatic system. Staging is not
This publication was made possible by a grant from the Lindsay Foundation.
Platelets. Type of blood cells as relevant to leukaemias.
produced in the bone marrow that
circulate in the blood, involved
in clotting and the control of
bleeding.

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Leukaemia & Blood Cancer New Zealand (CC24498) is a registered charity under the Charities Act 2005