Chemotherapy at the MacDermott Unit

Ulster Hospital, Dundonald

Welcome

This booklet gives you information about chemotherapy at the MacDermott Unit.

It is for people who are starting chemotherapy. It includes information about the start of chemotherapy as well as information that may be helpful during your chemotherapy and after it ends. Please ask us for help if you find it hard to read or if there is anything you don’t understand.

It will not answer every question about your chemotherapy. It is not meant to replace talking with your doctor(s), nursing staff or the hospital pharmacist.

For emergency medical advice relating to your chemotherapy:

Telephone our 24 hour helpline07713 082 649

It is important to keep to your appointment time, even if you feel unwell. If you need to change or cancel your appointment, contact us on the number above.

This booklet gives you information about chemotherapy at the MacDermott Unit.

It is for people who are starting chemotherapy. It includes information about the start of chemotherapy as well as information that may be helpful during your chemotherapy and after it ends. Please ask us for help if you find it hard to read or if there is anything you don’t understand.

It will not answer every question about your chemotherapy. It is not meant to replace talking with your doctor(s), nursing staff or the hospital pharmacist.

Contents

What is chemotherapy? 1 About the MacDermott Unit 3

Transport and parking 4 Preparing for chemotherapy 5

Dental health 5

Alternative medicine and complementary therapies 5

Planning Ahead 5

If you require a wig 7

Your first appointment 9 Having chemotherapy 11

Avoiding infection 12 Support services and websites 19

Macmillan health and wellbeing service 19

Macmillan CAB welfare advice service 20

Clinical psychology 21 Checklist 24 What happens after I finish chemotherapy? 254

Feeling unwell? Contact us! 26

What is chemotherapy?

Cancer occurs when normal body cells get out of control, multiply and spread.

Most chemotherapy drugs move around the body in the bloodstream. They reach the cancer cells wherever they are in the body. They damage the cancer cells. The cells eventually die, and the cancer may then shrink, or go away completely.

Unfortunately chemotherapy drugs don’t affect cancer cells only. They can damage any cells that are actively growing and dividing for example, cells in the mouth and hair roots. This can cause side-effects such as sore mouth or hair loss.

Normal cells recover quite quickly, so any damage to them is usually temporary. This is why most side-effects go away once chemotherapy is over.

There are over 50 different chemotherapy drugs. Some are given on their own, but several drugs are often given together (‘combination therapy’).

The chemotherapy you are given depends on many things, such as: -• The type of cancer you have• What the cancer cells look like • Where the cancer started in your body• Whether the cancer has spread to other parts of your body.

Chemotherapy may be used alone or offered with other treatments such as surgery, radiotherapy, hormonal therapy, biological therapies or a mixture of these

1

2

At this hospital, we carry out clinical trials. You may be approached by your doctor or a research nurse to discuss any studies that you may be suitable for.

More information about your chemotherapy

At your first appointment at the MacDermott Unit, we will give you a factsheet or several factsheets about your chemotherapy drug(s). These factsheets cover important information so you should try to read them. You can ask us for help if you find them hard to read or understand.

Factsheet(s) given: ……………………………………….………….

We can also give you a more detailed booklet called ‘Understanding Chemotherapy’. You can order it for yourself (free) from Macmillan Cancer Support on 0800 500 800 or from the Macmillan Information & Support Service at the Ulster Hospital (tel: (028) 9055 3246).

We can give you other information and will help in any way that we can. Some questions however can only be answered by your doctor.

If you are a web user, you might find useful information at: www.goingfora.com/oncology/chemotherapy.html

3

About the MacDermott Unit

The MacDermott Unit is an outpatient service for chemotherapy. This means you don’t stay overnight. There are nurses, doctors, pharmacists, support workers and other team members in the Unit.

The Unit is at the front of the main building at the Ulster Hospital. Instead of using the front door to the hospital, use the next doorway on the right. There are steps and a ramp. If you have any problems finding your way around please ask for help at Reception in the main building.

You may wish to wear comfortable clothing when you come for your appointments.

You may like to bring something along with you to pass the time, such as a book to read.

Some people like to have company when they come to their appointments. We have limited space at the unit, so please restrict company to one person. Please do not bring children to the unit as it can be distressing for other patients and distracting for staff.

There is tea and coffee in the waiting area of the unit. There is a shop, a restaurant and vending machines in the main building of the hospital.

4

Smoking is not allowed in hospital buildings. If you would like help to stop smoking please ask us for information.Please contact us if you need help for any of the following:-• Mobility/physical disability, • Learning disability, • Interpreting needs.

Please tell the receptionist if you change your address or your family doctor (GP).

Transport and parking There is a bus stop at the front of the hospital. For bus service information, contact Translink on (028) 9066 6630.

We recommend that you do not drive home from your chemotherapy appointments. However, if you arrange for someone else to drive you, car parking is available in the visitors’ car park at the front of the main building or in the multi-storey car park behind the main building. You will not need to pay for parking as you will be given a pre paid pass to use. Ask a member of staff for details. Disabled parking bays are available for badge holders close to the hospital.

The car parks are often busy so make sure to give yourself plenty of time to get parked.

If you find it hard to arrange transport to appointments, please let us know as we may be able to help.

5

Preparing for chemotherapy

Dental health

Make sure your dental check-ups are up to date and any dental work is done before you start chemotherapy. If you need to visit the dentist while on chemotherapy, or in the six weeks after it finishes, contact us first.

Alternative medicines and complementary therapies

Some people take ‘alternative’ medicines. These include things such as herbal medicines and vitamins.

Some alternative medicines can prevent chemotherapy from working as well as it should. Some can make side-effects more likely to happen. If you are taking alternative medicines, or are thinking about doing so, you should discuss this with your doctor, nurse or hospital pharmacist.

If you are considering having any complementary therapies, for example, aromatherapy, you should check that the therapist is suitably qualified to work with people with cancer.

Planning ahead

Planning ahead can help to alleviate some of the stress.Receiving chemotherapy can be a difficult time. There is the possibility that you can become unwell during this time. If this was to happen, who would look after your dependents (such as children or elderly parents)?

If you don’t have any support for your dependents for whatever reason, talk to one of our nurses. We can point you in the right direction.

6

How to plan for that unexpected hospital trip

You may want to consider what would happen in the event of an unscheduled hospital visit. Have you considered those whom you care for in your home?

Since your diagnosis, many of your friends and family have probably offered their help and support. Now is the time to take them up on it. Talk to your children, partner or whoever you share your family decisions with. Make a list of friends and family. Ask them to commit to dates during your chemotherapy when they can be available at a moment’s notice.

Key points to remember

• Talk to your friends and family about the possibility that you may need to attend hospital in a hurry, day or night

• Make up a clear time table with names, phone numbers and availability times, including overnight. Ask them to commit to a time period

• Write it down somewhere that is handy for you should you need it in a hurry

• Put the person’s contact details beside their name• Remember you may not be the person calling them• Regularly review your time table. Your contacts may change

their plans• Remember that people may change their plans• Discuss the plan with your dependents. They may wake up in

the morning and wonder where you are. If they know there is plan, it may help them feel less anxious.

Timetable

Monday Tuesday Wednesday Thursday Friday

Morning

Afternoon

Evening

Overnight

7

If you require a wig

If you are receiving chemotherapy that results in hair loss, you are entitled to a wig which you can choose from a selected range of styles. This is free of charge. Should you wish to choose a wig which is not available from the NHS contract selection, you will have to pay any additional cost.

You will be given a referral form by your nurse before you see a cosmetician (hairdresser). The cosmetician will usually see you before your chemotherapy starts. This is to ensure that you have your wig before any hair loss. If after six months you are still having treatment that results in hair loss you are entitled to another wig. Your nurse will make this referral for you.

About the service

There are various styles available and you can choose a style and colour to suit you. The cosmetician will make every effort to match colour and style to you own and can also cut and style your wig to meet your needs. They are also able to advise you on how to style and care for your wig.

Your appointment

The appointment usually takes place in the chemotherapy unit. All appointments are discreet and take place in a private consulting room. You are welcome to bring someone with you. If the wig is in stock, you will be able to get it and have it fitted that day. However, if it has to be ordered the supplier will contact you when the wig comes in to arrange another appointment.

When you have received your wig the supplier will ask you to sign your referral form to confirm this and they will send it to the appliance officer. If you are unable to collect your wig in person, you should sign the referral slip and return it to the appliance officer once you have received your wig.

8

For inpatients in the Ulster hospital a visit by the cosmetician can be arranged by your nurse.

Contact details

MacDermott UnitUlster HospitalTel: 07713 082 649

The Appliance OfficerMedical RecordsUlster HospitalDundonaldBT16 1RHTel: (028) 9048 4511 ext: 2779

Additional information on hair loss is available on the following websites:-www.cancerresearch.orgwww.macmillan.org.uk www.mynewhair.org

Or you can speak to the Macmillan Health and Wellbeing Co-ordinator on (028) 9055 3246 to get further information or find out what support is available to you locally.

9

Your first appointment

Your first appointment is usually to prepare you for chemotherapy, rather than give it to you that day.

You will meet your doctor and nurse to discuss your chemotherapy plan which helps to prepare you by making sure that you understand about your chemotherapy and can have your questions answered.

After this discussion, if you are happy to proceed with chemotherapy, you will be asked to sign a consent form.

We will explain how often you will need to have chemotherapy, how it will be given and for how long (your chemotherapy schedule or ‘course’). Your schedule may need to be changed later if it includes any public or bank holidays.

You will have a blood test and your height and weight taken at this appointment. If your chemotherapy is to be given through your veins, we will look at your arms to check them. This is to help us plan the best way to give your chemotherapy.

Please bring a list of any medicines that you are taking.

The nurse will help you assess your needs for any practical, social or spiritual support.

We will give you a record book to keep all of your information in:- • Bring this to each of your appointments• Show it to anyone who is caring for you, including when you

go to your GP, dentist or any hospital.

10

We will give you a display card, reminding you what to do if you are unwell:- • Put it in a prominent place at home• Show it to anyone who is caring for you or giving you medical

advice.

We will also give you our contact card:-• Carry this at all times.

Both cards have phone numbers on them for specialist advice for you and for people caring for you during and in the six weeks after your chemotherapy.

11

Having chemotherapy

Each visit to the Unit is likely to take a few hours.

Your drug factsheets tell you how your drugs are given.

For each of your appointments, we will need you to have a blood test. This can be done at your GP surgery, by your district nurse or by us in the Unit. If it is done here at the Unit, it can take up to an hour for your results.

Depending on your results, it may be safer for you if we delay your chemotherapy for a few days. If so, we will give you a new appointment.

It is important that you tell us how you have been feeling since your last appointment. If your chemotherapy is causing side-effects we can often help. If side-effects are severe we may be able to treat them, or it may be better for you if we delay or change your chemotherapy.

If your blood test results are OK you will be asked to wait while pharmacy gets your drugs ready. Your drugs are made up especially for you, and they must be exactly right. They are checked several times so this can take up to a couple of hours. When your drugs are ready, your nurse will give you the chemotherapy.

Once it is over you will be able to go home. Before you leave, we will make your next appointment. It is important that you bring your record book.

You may feel sleepy after your chemotherapy so try to bring someone with you who can accompany you home. We recommend that you don’t drive yourself home.

12

Avoiding infection

The immune system is the body’s defence against bacteria, viruses and other foreign organisms. Chemotherapy can often have a major effect on the immune system and may reduce the body’s defence against infection both during and up to 6 weeks after treatment finishes.

• It is important that you phone us straight away if you have a high or low temperature (higher than 37.5 or below 36), have any signs of infection or if you feel generally unwell. Some of these are listed in your alert card and chemotherapy book

• Always carry your chemotherapy record book and contact /alert card with relevant telephone numbers

• Show your alert card and/ or chemotherapy record book to any health care professional you see.

These are general Infection Prevention Control principles to minimise your risk of infection and the risk of you passing infection to others.

If you are in a ward or the MacDermott Unit we make the following detailed recommendations to help reduce your risk of infection.

Hand Hygiene

Always clean your hands properly by either washing under running water with liquid soap or using hand sanitiser on the ward at your bed space.

Important times to wash your hands include:-• After using the toilet/bathroom• After coughing /sneezing• Before handling food• Any time your hands are soiled/visibly dirty.

Hand wipes could be used by those who are restricted to bed and cannot wash hands.

See our detailed hand hygiene leaflet on how to wash your hands and important advice about effective hand drying.

Hygiene and Skin care

Daily showers and regular hair washing helps keep the balance of bacteria on your skin, which is naturally there.

In hospital, keep your bed space free from clutter to allow easy cleaning by our cleaning team. Where you spend most of your time at home, keep it visibly clean and free of dust/ dirt.

We recommend in hospital changing your towels and clothing each day, and single use face cloths, as when these are stored wet they allow bacteria to grow. Do not share towels or belongings with other patients.

If you are receiving chemotherapy or are at risk of infection for any other reason we will only use sterile saline to clean any broken skin areas.

Nails should be short and clean to avoid them scratching your skin.

When you are in hospital you will not be allowed to have either fresh or dried flowers or potted plants as these can act as a growing ground for bacteria.

13

Mouthcare

When your immunity is low, your mouth is another place where you can develop an infection. You will need to take extra care to keep your mouth clean.

You should drink plenty of fluids and clean your teeth regularly and gently with a soft toothbrush.

If in hospital you should use an ‘emesis’ bowl (disposable dish) for teeth cleaning to spit into and have it discarded immediately after each use.

Your doctor may prescribe antiseptic mouthwash for you to use after meals and at night.

It is important not to have any dental work done without discussing it with your hospital doctor.

Eating and Drinking

Drinking plenty of fluids can help prevent infection. Fluids help keep your mouth moist and healthy, and will also flush out your kidneys and bladder - which prevents the build up of debris where bacteria can grow.

For a variety of reasons people often find it difficult to eat and drink when they are having chemotherapy. It is important to try and eat a healthy and balanced diet as this will help maintain your immune system.

Some foods bring a higher risk of infection than others and some raw food is considered to have bacteria until they are cooked and rendered safe to eat.

14

It is advisable to ensure that all food is stored at the correct temperature and cooked thoroughly. It is also not a good idea to reheat food that has cooled, as this may allow bacteria to grow:-• Avoid contact with raw meat and chicken; Avoid contact with

undercooked fish, eggs, chicken or meat• Avoid take away food, precooked meats, pate, pre-made

sandwiches and cold cooked pies• Avoid unpasteurised milk, beer, probiotic yoghurts or drinks,

cheese and soft cheese• Always wash hands before food preparation or eating• Wash and/or peel all fruit and vegetables including salad

vegetables• Defrost all food thoroughly before cooking.

All food should be used before its sell by date and care should be taken to keep raw and cooked foods apart. It is best to always check your diet with the hospital staff.

Pets / Gardening

If possible avoid contact with animals that you don’t normally live with, and all animal faeces, saliva or urine, especially cat excreta, litter trays, and bird cages.

Wear gloves if handling any of the above with your household pets.

Do not empty fish tanks, ask someone else!

Wear protective gloves for outdoor work, and gardening to avoid injuries and contamination of any cuts.

Avoid places where a mould/ fungus called aspergillus is likely to be. It can grow in dead leaves, grain stores, compost piles or other decaying vegetation. Brick, mortar and cement dust may also contain this fungus.

15

Infections

Those calling to visit you should wash their hands on entering your home and/ or hospital ward and follow the guidance listed above on when to wash their hands.

Avoid contact with anyone who has obvious infections, cold or flu, vomiting and diarrhoea.

Avoid anyone who has had recent live vaccinations for 48 hours.

Avoid changing nappies of children who have been recently vaccinated.

You should not have any live vaccines while you are having chemotherapy and for 6 months afterwards.

Examples of live vaccines include Rubella, Mumps, Measles, MMR (triple vaccine for measles, mumps and rubella), BCG and Yellow fever. Ask at your local travel clinic or GP whether the vaccine you need is live.

Information about seasonal flu

Receiving chemotherapy places you in a priority group to receive vaccination against seasonal flu and pneumococcal infection. It is advisable that you contact your GP and arrange to have these vaccinations. This cannot cause flu or a pneumococcal infection.

16

This booklet does not cover all the issues about which you may need help with and/ or information about. We can help and/or give information on the following, please ask:-• Avoiding infections• Feeling sick (nausea)• Eating and drinking enough fluids• Mouthcare• Diarrhoea or constipation• Help with side effects• Feeling very tired (fatigue)• Clinical trials• Complementary therapies• Emotional support• Sex and contraception• Fertility• Hair loss• Skincare• Drinking alcohol• Breastfeeding• Holiday travel• Work• Finance and benefits.

17

If you are unwell between appointment, contact us right away. There is a list of

symptoms to watch out for on the back page of this booklet and on your alert card.

It is really important that you are cared for quickly and properly because your ‘immune system’ is affected by chemotherapy and a delay could be life threatening (your immune system helps you fight illness and infections).

You could be:-• Given advice over the phone• Advised to contact a GP• Advised to come to the hospital (possibly Emergency

Department) or• Advised to ring 999 for an ambulance.

18

Support services and websites

The following services are available at the Ulster Hospital,which you can speak to your nurse about:-• Macmillan health and wellbeing service• Macmillan welfare advice• Counsellor / Psychologist • Chaplain / Spiritual support• Wig specialist / Cosmetician • Palliative Care Team• Dietician• Occupational Therapist• Physiotherapist • Social worker• Pharmacist.

Macmillan Health and Wellbeing Co-ordinator

The Cancer Health and Wellbeing staff are based at the Macmillan Information Centre in the Ulster Hospital. They are there to support you and anyone affected by your diagnosis, throughout the cancer journey.

This support includes the following:-• Advising you of the various supports in your local area

including programmes of care to deal with the possible short term or late side effects of cancer eg. decreased energy or coping with emotions

• Helping you access information not just of a clinical nature but also in relation to any of the issues affecting you throughout the cancer journey eg. transport, help at home or travel insurance

19

• Guidance on how to manage your condition to ensure maximum health and quality of life (both during and after your treatment)

• Access to Macmillan Welfare Advice to help with any financial or practical concerns

• Advice and support for carers.

To find out more:-

Call (028) 9055 3246 or email: macmillaninformationandsupport@setrust.hscni.net

Or visit the centre where you can also help yourself to a variety of high quality information.

Macmillan Information CentreUlster Hospital

You can also speak to the Health and Wellbeing Co-ordinator about any issues you may have by visiting the Centre during drop in times, when an appointment is not necessary. Tuesday and Thursday 2.00pm - 4.00pm and Wednesday 9.30am - 12.00pm.

Feel free to ask your nurse for directions.

Macmillan CAB welfare advice service

If you are receiving treatment you are eligible for a confidential benefit check to ascertain if you are entitled to additional financial support.

Macmillan recognises that finances are one of the practical issues that can be a concern and aim to assist, where possible.

20

The Macmillan Welfare Rights advisors can also help with a range of issues such as Welfare Rights advice, getting a blue badge or completion of benefits applications.

For an appointment telephone (028) 9055 3254.Email: marshalls@citizensadvice.co.ukMacmillan CABWelfare Advice ServiceUlster Hospital

Clinical Psychology

Being given a diagnosis of cancer can be worrying for both you and your family. It is possible to experience a whole range of different feelings such as anxiety, anger, fear, panic or helplessness. Most of these feelings are very common and a normal reaction. It may be enough for you to talk through these feelings with a family member, friend, or with one of the health professionals involved in your care.

However, some people may want more help to be able to understand and make sense of how they are feeling and how cancer is affecting their life.

Why might you want to use the Clinical Psychology Service? • To help you come to terms with the changes that can occur in

your life after a diagnosis of cancer • If the normal reactions to a cancer diagnosis such as anxiety,

fear or helplessness become overwhelming• If you are experiencing psychological or emotional distress

connected to worries about treatment, physical symptoms or body image

• To help you adjust back to family or work responsibilities at the end of the treatment.

21

Who provides the Service?

This service is provided by a Consultant Clinical Psychologist based at the Ulster Hospital.

Who can access the Service?

If you are being treated for cancer at the Ulster Hospital, you can be referred by a health professional on your cancer team. You can also be referred to the service by your general practitioner.

Relatives who are caring for a person affected by cancer and who feel they would benefit from counselling support, can contact the Cancer Focus Clinical Counsellor also based at the Ulster Hospital. This can be done via the Cancer Focus Freephone Helpline number 0800 783 3339.

What can I expect to happen?

When a referral for the Clinical Psychology Service is received and considered appropriate, you will be offered an initial assessment appointment. This will take place at the Ulster Hospital and may last up to an hour.

This first appointment is used to assess how your difficulty is affecting you and to identify what particular type of help would be most useful to you. If the referral is not appropriate for clinical psychology, you may be referred for counselling support instead.

Confidentiality

All appointments are private and information discussed is confidential, which means it is kept private between you and the clinical psychologist. It would only be discussed with other health professionals involved in your care if you agree to this or if there were concerns about your safety or that of others.

22

Contact details

For information about the Clinical Psychology Service please contact: -Dr Maggie MooreConsultant Clinical Psychologist Tel: (028) 9055 3112 (Direct line)

Websites for further information about cancer and the support available to you:www.cancerni.net www.survivorship.cancerni.netwww.macmillan.org.ukwww.cancerhelp.org.uk

23

Checklist

Remember the following for each of your appointments:-• Bring your record book• Bring a list of any medicines you are taking • Wear comfortable clothing• Bring something to help pass time• Ideally arrange for someone else to drive you home after

your chemotherapy.

Depending on your appointment time, you may wish to eat a light meal beforehand.

24

What happens after I finish chemotherapy?

After your chemotherapy has finished, you will have regular check-ups and possibly scans or x-rays. These will probably continue for several years. If you have any problems, or notice any new symptoms in between your appointments, let your GP know as soon as possible.

Many people find that they get very anxious before their appointments. This is natural and it may help to get support from family, friends, or one of the organisations listed in this booklet during this time.

When your treatment is finished, you may feel it’s time to get back to normal. However, this can sometimes be one of the hardest times to cope with. Recovery times vary, and no one can say for sure how long it should take to get over the treatment and its effects. The end of the visits to hospital for treatment can leave you feeling like you’re on your own. Many people find that they feel very low and emotional at this time, when they had expected to be able to put the cancer and the treatment behind them. This may be the time when you need the most support. Support is available if you would like it.

For six weeks after your chemotherapy ends, you still need to contact us straight away if you feel

unwell. There is a list of symptoms to watch out for on the back page of this booklet and on your alert card. This

is because your immune system may still be affected by the chemotherapy.

25

Feeling unwell

Contact us straight away if you have any of the following during your chemotherapy and in the six weeks afterwards.

It is really important that you are cared for quickly and properly because your ‘immune system’ is affected by chemotherapy and a delay could be life threatening.

• Feeling very hot or feeling very cold• A temperature of below 36oC or above 37.5oC • Shivering attacks or flu like symptoms• Breathing problems, persistent cough, coughing up green/

yellow spit or blood• Pain on passing urine, frequency of urine or blood in your

urine• Feeling or being sick• Diarrhoea for more than 24 hours or bleeding from your back

passage or in your stools• Sore mouth or sore throat preventing you from eating or

drinking• Unexplained rash, new bruising or purple spots on your skin• Pain not controlled by medication• Bleeding from your gums or nose, blood blisters or bleeding

that does not stop with general first aid• If you have a central line (‘PICC’, ‘Hickman’ or ‘Port a cath’)

and the area around it becomes red, swollen and/or painful• Any other symptoms which cause you concern.

Your contact number24 hour Helpline 07713 08 2649

Phone us first!

26

Designed by Communications Department

Publication date: February 2014 Review February 2016This information can be made available on request in large print and in alternative formats. Please ask a member of staff for details.