Download Rushcliffe Cancer Forum

Rushcliffe
Cancer Forum
Information booklet for patients, carers, family and friends.
www.rushcliffeccg.nhs.uk
What to have in your
medicine cabinet
Even a minor illness and ailment – such as colds, headaches and diarrhoea – can disrupt your life. Be prepared for most common ailments by keeping a well-stocked medicine cabinet at home.
This list is not exhaustive, but it will help you deal with most minor ailments.
Always follow the directions on medicine packets and information leaflets, and
never exceed the stated dose.
If you have further questions about any of these medicines or you want to buy
them, ask your local pharmacist.
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The forum has developed this booklet to provide useful information covering a variety of topics on which you may focus your thoughts and feelings.
Please do not hesitate to contact Sue Knowles on 0115 9699060 or [email protected] if you would like more information, or are interested in joining the Cancer Forum.
Self-help directory
Tell us your story...and help improve health services for everyone
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The Patient Experience Team is here to listen and ensure that your story makes a difference. Tell us your story today!
E [email protected]
T 0800 028 3693 (Option 2)
Working with professionals
When you are living with cancer you are likely to come into contact with
a number of health and social care professionals. Working together with
these people will help you to get the best information and care for your needs.
You and your doctors
There will be a variety of people who will be able to provide care and support for
you and your family during your cancer journey. A selection of these is listed over
the next few pages.
As it is likely that doctors will be the first people that you talk to about your
condition, we have described how these different doctors will interact with you
during your illness.
Your General Practitioner (GP) should co-ordinate the help you want during your diagnosis, treatment and beyond. They are responsible for all aspects of your
medical care at home and can arrange further help from other professionals
such as nurses.
Your GP will refer you to a hospital doctor or specialist (a doctor who specialises
in a particular area of medicine).
Doctors are busy people and their time is often limited. You may feel rushed
when you are with them. However, it is important that you ask for an explanation if you do not understand anything your doctor tells you. Even when
the doctor is being clear and thorough, it is often difficult to take in what is being said, particularly if you are worried or anxious about the information you
are being given. You may find it helpful to:
•take someone to your appointments with you
•make notes before, during and after your appointment.
Remember: there are no ‘right’ or ‘wrong’ questions, and no wrong time to ask them. You can ask any question at any time.
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People who are there to help:
Your health care team
Primary health care team: this is the community-based team, which includes the general practitioner, practice nurses, receptionists, district
nurses as well as other professionals.
1General Practitioner
Your GP is responsible for all aspects of your medical care at home, and can arrange help for you from other professionals or services.
2Community Matron / District Nurse / Community Nurses
The district nursing team provide ‘hands-on’ nursing care and practical advice at
home. In Nottinghamshire, the district nursing service is available 24 hours a day.
3Clinical nurse specialist
A clinical nurse specialist (CNS) has been specially trained to an expert level in
a particular area of medicine or care. You may come into contact with various
clinical nurse specialists, both in hospital and in the community.
4Macmillan nurse
Macmillan nurses are clinical nurse specialists, specialising in cancer care. They have been specially trained to help people living with cancer. They are
skilled in pain and symptom control, and can offer emotional support and practical advice to people with cancer and their families. In Nottingham, there are three teams of Macmillan nurses; one based at Queen’s Medical Centre Campus, one based at Nottingham City Hospital Campus and one covering the community.
5Marie Curie nurse / Hospice at Home nurse
These nurses provide care for people with cancer in their own homes. They support the work of the primary health care team, and are available
through the district nursing team. They provide care either during the day or at night, which allows family/carers to have a break or sleep.
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Secondary health care team:
This is the hospital health care team
6Hospital doctors
There may be several types of hospital doctors involved in your care, depending
on the type of cancer you have and the treatment this requires. These include:
Cancer surgeons – carry out operations to remove cancerous growths. They specialise in removing cancer from a particular area in the body (such as
bowels), but may also carry out surgery on people for reasons other than cancer.
Oncologist – involved in treating cancer with drugs or with radiotherapy (high energy X-rays) and usually specialise in treating particular types of cancer.
Drug treatment includes chemotherapy, biological therapies and hormone therapies.
Haematologist – specialise in the treatment of cancers of the blood and lymphatic system, such as leukaemia, lymphoma and myeloma.
Palliative Medicine Consultants – are specialists in the management of pain
and other symptoms caused by cancer or the side effects of the treatment. They provide supportive emotional, social and spiritual care for patients and their families.
7Specialist palliative care team / Hospice team
These teams focus on achieving the best quality of life for patients and their
families, taking into account the person and the issues that are important to that
individual. This team is often based in a specialist palliative care unit or hospice.
The hospice team includes a variety of professionals who work together to provide care tailored to the individual and family.
8Other support
Social workers – professionals who can help you to get practical help, emotional help and financial support. You may come into contact with a social worker whilst in hospital, or at home. Social workers (Rushcliffe) can be contacted on 0300 0830 100.
Occupational therapists (OTs) – provide advice on carrying out activities that
may have become more difficult due to illness, such as cooking, washing and
dressing. There are OTs based in the hospital and others based in the community. OTs can be contacted on 0300 0830 100.
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Physiotherapists – can help to maximise a person’s mobility and maintain their independence. They offer practical advice and exercises in order to achieve this. Please speak with your GP should you feel that a physiotherapist
assessment might be helpful to you.
Dieticians – can offer support and practical advice on a range of problems
connected with diet, such as loss of appetite, nutritional needs and appropriate food to try.
Local information and key contacts
You may find it helpful to keep a list of your key contacts.
Contact
GP
Community matron
District nurse
Hospital consultant
Oncologist
Clinical nurse specialist
Physiotherapist
Occupational therapist
Social worker
Dietician
Macmillan nurse
Home care team
Other
06 www.rushcliffeccg.nhs.uk
Name
Telephone number
Help and support
If you are concerned about your condition or symptoms that you are experiencing, if possible do not let it go beyond the middle of the week without
contacting the relevant health professional (GP, district nurse or hospital team). If it is left too close to the weekend it may be more difficult to sort out.
Please remember if you need help, whatever time of day or night, contact your
health professionals.
Make sure you know how to contact your local health professionals out-of-
hours. Out-of-hours medical services are provided by Nottingham Emergency
Medical Services (NEMS) based at a primary care centre at Platform One Practice, Station Street, Nottingham. You can contact the NEMS service by telephoning your usual GP surgery, or dial 111 for urgent advice when the surgery is closed.
To contact the district nursing service outside of office hours, please use the
telephone number found inside the district nursing notes. This service is available all day, every day.
Useful tips for helping you to organise your care
1Keep all useful telephone numbers easily available, such as your district nurse and GP. There is a page in this booklet for you to record these.
2You may find it helpful to keep a notebook with details of your contact with any health and social care professional at home.
3Use a file to keep all leaflets, appointment cards and information together in one place.
4You may find it helpful to speak with your GP following hospital appointments. Your GP may also find it helpful to hear from you to find out how you are.
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Services and Support information
Macmillan have a local drop-in centre at Nottingham City Hospital, advice
includes finances, emotional support, cancer symptoms and treatments.
Macmillan Information Centre at Nottingham City Hospital
T 0115 8402650
Macmillan Cancer Support Line (National Call Centre)
T 0808 808 00 00
Nottinghamshire County Council has a benefits team to give advice regarding financial help. Please call 0300 500 80 80.
You may qualify for Personal Independence Payment (PIP) (under 65 yrs).
Please call 08457123456 for a form.
You may qualify for Attendance Allowance (over 65 yrs).
Please call 0345 6056055 for a form.
You may be entitled to a disabled badge for your car.
To enquire, please call Nottinghamshire County Council on 0300 500 80 80.
For Blue Badge enquiries, please call 0844 463 0213.
Advance Care Planning (ACP)
Advance care planning gives you the chance to tell us how you would wish to
be cared for if you became seriously or terminally ill and couldn’t tell us.
The aim is to develop a better understanding and have a record of your priorities, needs and preferences and those of your family/carers.
Recording these decisions can help your doctors and nurses to act in accordance
with your wishes if you weren’t able to tell us at the time. It assists forward planning for the best possible, joined up care plan personal to you.
Please talk to your GP/Nurse who will be able to provide some documentation.
Self Help support groups
A self-help support group is a group of people who have experience of a particular health issue of life situation. This may be their own experience or as a parent, family member, friend or carer.
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There are a range of self-help support groups in Rushcliffe and Nottinghamshire
devoted to people with cancer. For information on all self-help support groups
in Nottinghamshire, please contact Self Help Connect UK on 0115 9111662 or
[email protected], or visit www.selfhelp.org.uk
Macmillan Cancer Support
Cancer charity Macmillan provides a range of support services:
Macmillan Cancer Support Line (National Call Centre)
Please call 0808 808 00 00. Monday to Friday, 9am - 8pm.
Other support
Maggie’s Centre in Nottingham. City Hospital Campus, Gate 3, Hucknall Road,
Nottingham NG5 1PH. Please call 0115 8718693.
Marie Curie Support Line for confidential support and practical information on all aspects of terminal care. Please call 0800 090 2309, Monday to Friday, 9am - 5pm. Alternatively, please visit www.mariecurie.org.uk/help
Marie Curie Helper in Nottingham.
Please call 0845 304 8730 or email [email protected]
Carers Trust UK East Midlands
Please call 0115 9628920 or email [email protected]
Alternatively, please visit www.carerstrustem.org
Rushcliffe Cruse Bereavement Care
Please call 0115 825348 or email [email protected]
Rushcliffe Community and Voluntary Service (RCVS)
Please call 0115 9699060 or email [email protected]
Alternatively, please visit www.rushcliffecvs.org.uk
CHAT – Cancer Help Action Team
They usually meet on the first Wednesday in the month, for coffee at The Bistro,
Main Street, Keyworth. Everyone is welcome, outings may also be organised. For more information, please contact Daphne Butler on 0115 9373734.
Dove Cottage Day Hospice provides a range of services for patients over the
age of 18 with advanced progressive disease, where the treatment is palliative.
Referrals can be made by health professionals, individuals or their families. To make a referral, call 01949 860303 and ask to speak to one of the nurses.
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Medical terms explained
Abdominal
Referring to the body area including
the stomach, intestines and other
digestive organs.
Carcinoma
A cancer that arises from the lining of an organ or system. They are the
commonest cancers.
Adjuvant therapy
Treatment, usually chemotherapy or
radio-therapy, given following surgery.
It is sometimes given even if there are
no symptoms of cancer at the time of treatment.
Chemotherapy
The treatment of disease with chemicals, such as cytotoxic (cancer
destroying) drugs.
Alopecia
Hair loss.
Aromatherapy
Gentle massage using oils from flowers, roots and leaves, often with relaxing perfumes.
Benign
Non-cancerous, used to refer to tumours which grow slowly in one
place and which, once removed by
surgery, tend not to recur.
Biopsy
Examination of a sample of tissue that
has been removed from an area of the
body where cancer is suspected.
Bronchoscopy
A test used to examine the inside of
the lung.
Cancer
The name given to a group of diseases
that can occur in any organ of the
body, and which all involve abnormal
or uncontrolled growth of cells.
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Computerised Tomography (CT scan) Produces a cross-section image of the
head and body, which is then analysed
by computer.
Deoxyrivo Nucleic Acid (DNA)
The genetic material present in our
cells which is responsible for passing
on vital information on cell growth,
division and function.
Endoscopy
Looking inside the body through a
small fibre-optic tube passed into the
digestive system.
Fine needle aspiration
The use of a fine needle under local
anaesthetic to take a sample of cells
from a suspicious lump to determine
whether it is benign or malignant.
Haematologist
A doctor who specialises in treatment
of blood disorders.
Hickman line
A special tube inserted under anaesthetic through the chest into
a large vein, so that chemotherapy
drugs can be fed directly into the
bloodstream. It can stay in place for
months and means needles do not
have to be used during treatment.
Histology
The study of tissues, used in diagnosis.
Hormones
Chemical substances produced by
glands, which circulate in the blood
and help control growth, reproduction
and other functions.
Hormone therapy
Treatment with hormones to control
growth, usually for cancer of the
breast, prostate, thyroid and uterus
(womb).
Immune system
The body’s main defence system
against infections or foreign substances.
Inoperable
Refers to a cancer that cannot be
removed by surgery, either because the
cancer has spread to nearby organs
or because removal might cause too
much damage to normal tissue.
In situ
The earliest stage of cancer, when it is localised to its area of origin.
Intramuscular
Given by injection into a muscle.
Intravenous
Given into a vein by injection or infusion.
Isotope scan
A scan involving the injection of a very
weak radioactive substance, which collects in the organ being investigated
so that it can be viewed more easily
with a special camera.
Lumpectomy
The surgical removal of a lump.
Lymphatic system
The system of lymph nodes and the
vessels or small tubes which connect them. Lymph nodes are located throughout the body, filtering out dangerous substances
and producing infection-fighting cells
called lymphocytes.
Lymphoedema
Swelling, usually in the arms or legs,
which occurs because the lymph vessels are damaged or blocked. This can occur following some treatments for cancer or due to the cancer itself.
Magnetic Resonance Imaging (MRI)
Uses magnets rather than X-rays to
produce pictures, which are then analysed by computer.
Malignant
Cancerous. Malignant tumours can
invade and destroy surrounding tissue
and have the capacity to spread.
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Mammogram
A specialised X-ray which shows up
the breast tissue and can detect breast
cancer at a very early stage.
Pathology
The branch of medicine concerned
with the examination of diseased tissues.
Mastectomy
The removal by surgery of all or part of the breast.
Position Emission Tomography (PET scan) A Pet Scan can show how
body tissues are working as well as
what they look like. It can help diagnose and stage a cancer. It can
help decide on treatment options.
Metastases
The spread of cancer from one part
of the body to another, by way of the
lymphatic system or bloodstream.
Nausea
The feeling of sickness.
Neoplasm
A medical term for tumour (any new abnormal growth). Neoplasm may be malignant or benign.
Oncologist
A doctor who specialises in treating cancer. A clinical oncologist,
or radiotherapist, specialises in treating
cancer with radiation, and a medical
oncologist specialises in treating cancer with drugs.
Orchidectomy
Surgical removal of a testicle.
Palliative care
Palliative care concentrates on your
quality of life and that of your family.
It focuses on controlling pain and
other symptoms, and meeting a person’s social, physical, emotional
and spiritual needs.
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Primary cancer
The first malignant tumour to develop
in a particular part of the body.
Prognosis
An assessment of the expected future
course and outcome of a person’s
disease.
Radiographer
The member of the health care team
who takes X-rays and scans (diagnostic
radiographer) or gives you radiotherapy (therapeutic radiographer).
Radiologist
A doctor who understands and interprets a scan or an X-ray.
Radiotherapy
The treatment of cancer by X-rays or
gamma rays to destroy cancer cells.
Reflexology
A relaxing massage technique which
uses pressure to the feet and improves
the blood supply to various parts of
the body.
Secondary cancer (secondaries)
New tumours, or metastases, which
are formed because cancer cells from
the original tumour have broken off
and been carried to other parts of the
body in the bloodstream.
Staging
Determining the extent of cancer in an individual, using strict measures. It helps doctors decide on the best
treatment.
Stoma
An artificial opening between an
organ and the skin surface formed by
surgery. There are different types including a tracheostomy (formed
from the windpipe), ileostomy (formed
from the small bowel), colostomy
(formed from the large bowel) and
urostomy (formed from the bladder).
Subcutaneous
Given by injection beneath the skin.
Travel
Syringe driver
A means of administering pain-killing
or chemotherapy drugs under the skin
which relieves patients of the need for
frequent injections.
Terminal illness
Active and progressive disease which
cannot be cured. Curative treatment is
not appropriate but palliative care is.
Thoracic
Referring to the chest area.
Tumour
A lump or mass of cells which can be either benign or malignant. Also known as a neoplasm.
Tumour markers
Substances produced by some cancers
that can be traced in the blood.
Ultrasound scan
Use of sound waves to build up an image of the internal organs.
People who have cancer and wish
to travel may wish to secure travel
insurance.
for a letter from your GP stating that
you are well enough to travel. Travel
insurance can sometimes take several
weeks to arrange and it is important
to check the policy carefully for exclusions. It is advisable to obtain
several quotes as costs can vary.
Companies will look at an individual’s
situation and their intended destination. They cannot guarantee to offer you insurance and some companies may not offer cover for cancellations. Most companies will ask
Macmillan produces a useful document ‘Getting Travel Insurance’
and it is always helpful to consult
friends or support groups with experience of travel in similar
circumstances.
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Travel insurance
A valid European Health Insurance Card
(EHIC) will entitle you to reduced cost
(sometimes free) emergency treatment
in many European countries. However,
the EHIC is NOT an alternative to travel
insurance. It may not cover all treatment
costs and never covers the cost
of repatriation.
Further information is available at www.nhs.uk/healthcareabroad.
This website also contains information on some non-EU countries where
agreements with the UK are in place to
provide some healthcare services.
When travelling with family and friends
it is important to ensure that their travel
insurance policy covers them in the
event that:
•you cancel the holiday due to ill heath
•you need to return home earlier than expected
•you need to extend your holiday due to ill health and require the assistance of one of your party.
Note: The standard insurance cover provided with a package holiday is unlikely to cover anyone who has/had
cancer, but there are a number of specialist companies available.
Which (www.which.co.uk) provides a comparison table of specialist companies.
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Maggie’s Centre in Nottingham can
provide a list. Please call 0115 8718693.
BIBA (British Insurance Brokers Association) can also direct you to an
appropriate insurance company or broker. BIBA are particularly helpful if
you and/or any family member to be
included on the policy, have a variety of ongoing medical conditions.
Please call 0870 950 1790 or visit www.biba.org.uk
Additional documentation
It is advisable to carry a full medical summary with you on holiday, including
the dates of key events. It can be helpful
if it is translated into the appropriate
language.
Information sheets regarding surgery
can also be useful, particularly if they
contain pictures of the procedures, and
details of current medications (e.g. copy
of the latest prescription) may come in handy.
Notes
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This booklet has been produced by Rushcliffe Cancer Forum.
November 2015
Rushcliffe Clinical Commissioning Group
Easthorpe House
165 Loughborough Road
Ruddington
Nottingham
NG11 6LQ.
T 0115 8837880
E [email protected]
www.rushcliffeccg.nhs.uk