Reprinted from the original painting “The Lilac Spirit Remembered” by Malcolm Fryer hanging in the Lilac Centre

St Helens and Knowsley Teaching Hospitals NHS Trust

St. Helens Hospital, Marshalls Cross Road, St. Helens, Merseyside. WA9 3DA Telephone: 01744 646170 Fax: 01744 616177

Patient Information

PERSONAL DETAILS

YOUR DIAGNOSIS & TREATMENT

Name: Address:

CHEMOTHERAPY REGIME

Tel: Date of birth: Lilac Centre Tel: 01744 646170

DRUG ALLERGIES

IMPORTANT - PLEASE READ CAREFULLY Carry this booklet with you at all times. Show it to your GP, dentist or chemist before you receive any treatment or medication. If you feel unwell or have a high temperature, please contact us straight away (refer to page 9)

START DATE & TIME

Who to contact when your treatment has finished

1. Introduction 2. Lilac Centre 3. Inpatient Facilities 4. Multidisciplinary Team 6. Chemotherapy 11. General Information 12. Useful Addresses 14. Alert Card

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INTRODUCTION

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This booklet is designed to give you any relevant information about your care and treatment whilst having chemotherapy, both as a Day Patient, or as an Inpatient at Whiston Hospital. We hope that this booklet will help reduce any fears or anxieties you may be feeling when starting your chemotherapy treatment.

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THE LILAC CENTRE The Lilac Centre is based in St. Helens Hospital. It is here that your chemotherapy treatment will be administered. The time of your stay in the centre will depend on what type of treatment you are having. If your treatment involves having an intra-venous infusion (drip), you are able to sit in a comfortable lounge area and have free drinks, watch TV, listen to music or read a magazine. You do not have to bring anything in with you, and if you attend between 12.00 midday and 1.00pm you will be served a cold lunch. The Lilac Centre opens at 8.00am until 5.00pm, on Monday to Friday. We are closed all Bank Holidays. It is possible to attend the centre if you need to have a blood or platelet transfusion. Also, certain investigations are carried out here i.e. Bone Marrow Aspirate, Hickman Line insertion and PICC insertion. We have a policy which encourages patients to phone if they are experiencing problems related to their chemotherapy treatment, 01744 646170. Out of hours contact numbers will be given to you on your first visit to the Lilac Centre. If you are unwell out of hours you may be advised to attend A&E (please take your Chemo Alert card).

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INPATIENT FACILITIES The oncology/haematology ward is used for inpatient chemotherapy or if you are unwell throughout your treatment. On your arrival to the ward, you will be met by a member of staff, and you will be introduced to a team of nurses who will care for you during your stay. A senior nurse (Team Leader) will be responsible for planning your care in conjunction with other members of a multidisciplinary team. The ward, and the Lilac Centre, work closely together and provide a 24 hour 'open door' policy. You will be encouraged to use this service, particularly if you suddenly feel unwell or your temperature is raised.

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FLOWERS

Research has shown that fresh flowers are a source of infection. Therefore, please refrain from bringing them into the ward.

FACILITIES

The ward has facilities for relatives to stay both during the day and overnight. Please ask the ward staff for details. 3

THE MULTIDISCIPLINARY TEAM SOCIAL SERVICES

The Social worker can offer you advice on support services for when you are discharged from hospital. There is also a free benefit advice drop-in clinic held on the first Thursday in every month between 3.00pm and 5.00pm.

DISTRICT NURSE

Should you need a District Nurse when you go home, this will be arranged by the nursing staff.

DIETICIAN

A dietician is available to offer advice on dietary needs and nutritional support.

PALLIATIVE SUPPORT TEAM

This specialised team provides advice and treatment for symptom control. They also provide emotional support and information on community teams to help you and your family when you leave hospital.

SPECIALIST NURSES

There is a team of Nurse Specialists to help you with problems specific to your cancer. The nursing staff will contact them on your behalf should you require their services. 4

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SPIRITUAL CARE

Representatives of different denominations are available. If you would like Holy Communion or wish to see one of the Chaplains please ask the nursing staff to contact them. There is a Chapel in the Hospital Grounds - please feel free to visit it. It is there for you.

COUNSELLING SERVICE

This offers a free counselling service for patients and their families or carers, who are experiencing difficulties relating to their illness. It is important to know that you can rely on strict confidentiality. This is discussed in more detail during the initial meeting with your counsellor. Bereavement Counselling is also available. For more information either drop in to the Lilac Centre or phone for an appointment, 01744 646173.

COMPLIMENTARY THERAPIES

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Can promote a feeling of well-being and help reduce stress levels by creating a feeling of soothing relaxation. The Lilac Centre has highly trained and qualified therapists who provide an excellent service.

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CLINICAL TRIALS

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Some patients who attend the Lilac Centre for treatment have been invited to participate in clinical trials. The trial you take part in may compare one treatment with another, or you may take part in a trial 5

of a new or experimental anti-cancer agent. The trials are carried out under strict ethically controlled conditions so that the safety and wellbeing of the patient is maintained at all times.

TRANSPORT

Patients are encouraged to arrange their own transport to and from the Hospital. However, in certain circumstances an ambulance can be arranged. Please speak to staff if you have any transport difficulties.

CHEMOTHERAPY & ITS SIDE EFFECTS

Chemotherapy simply means drug treatment. The drugs we give to treat cancer are cytotoxic and the purpose of cytotoxic chemotherapy is to kill cancer cells, or to stop them dividing abnormally. The drugs are usually given by injection (i.e. drip) or tablet form. On your first visit to the Lilac Centre, your treatment and the possible side-effects will be explained to you by one of the chemotherapy nurses. You will also be given a card with a contact number on and you are asked to sign a chemotherapy consent form. Side-effects of cytotoxic chemotherapy can vary according to both the drugs used, and the individual. It is important not to anticipate side-effects but to be aware of the possibility of suffering from them. Possible side-effects are:6

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1. Nausea and Vomiting Many people suffer from nausea and vomiting, sometimes the sickness may last just a few hours, or in severe cases it could last for several days. When having your chemotherapy treatment an anti-emetic (anti-sickness) drug will be given to you intra-venously. You will then be given tablets to take home with you. It is advisable to take these tablets for three days to help prevent sickness. Do not wait to feel sick before taking them. If you find that the anti-emetics are not effective please let us know as there is always an alternative. 2. Diarrhoea and Constipation Please inform staff if there is any change in bowel habit. The appropriate treatment can then be offered. 3. Fatigue Tiredness is a common side-effect which affects many people having chemotherapy treatment. If this is a problem please discuss with your nurse. 4. Sore Mouth Some chemotherapy drugs can cause a sore mouth or mouth ulcers. Be particularly careful with oral hygiene:- Brush teeth with a soft tooth brush and rinse mouth with a mouthwash after each meal, if possible. If you do suffer from a sore mouth please let the nursing staff know. In some cases the drugs you are given can change your sensation of taste. A metallic taste in the mouth is often complained of and foods 7

just 'do not taste the same'. When your treatment has finished your normal taste sensations will return. 5. Hair Loss Hair loss can be a very traumatic side-effect of chemotherapy, but not all patients having chemotherapy treatment will lose their hair. This will depend on the drug given and the individual reaction to that drug. You will always be told of the possibility of losing your hair and arrangements will be made for you to see a hairdresser who specialises in wigs. It is advisable to see the hairdresser before you start losing your hair. If you have long hair you may consider having it cut short before the start of your treatment. For those patients who are not going to lose their hair, there is a possibility of their hair becoming thinner and damaged. We advise these patients against colouring and perming their hair and to use a gentle shampoo for frequent use. Also avoid the use of heated appliances. Cool cap facilities are available for some patients; please speak to your consultant for more details.

USEFUL ADDRESSES AND CONTACT NUMBERS Rainford Carers Support Group Meet at 1.30pm every other Wednesday in the Village Hall or Tartan Tea Rooms in Ormskirk Road, Rainford. Sutton Carers Support Group Meet at 1.00pm on 1st and 3rd Wednesday of each month at St. Anne’s Parish Rooms, Monastery Lane, Sutton. Knowsley Carers Support Group Tel: 0151 549 1412 or 0151 448 9771 Jeanette Ribton Oncology Clinical Nurse Specialist Tel: 01744 646794 DSS Benefits Enquiry Line Tel: 0800 88 22 00 Angela Madigan Haematology Clinical Nurse Specialist Tel: 01744 646796 Ruth Jackson Haematology Clinical Nurse Specialist Tel: 01744 646789

6. Altered Blood Count Cytotoxic drugs cause some blood cells to fall temporarily. There is nothing you can do to prevent this happening - but be aware of possible symptoms. If you feel very tired or breathless on exertion please let us know. You may need a blood transfusion. Some drugs lower your White Blood Cells; these cells fight infection therefore, you are more at risk of getting an infection i.e. sore throat or a chest infection. 8

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USEFUL ADDRESSES AND CONTACT NUMBERS Lilac Centre St. Helens Hospital Tel: 01744 646170 Lilac Centre Counselling Service St. Helens Hospital Tel: 01744 646173 ONC/Haem Ward Whiston Hospital Tel: 0151 430 1560 Breast Cancer Care Kiln House, 210 New Kings Road, London SW6 4NZ Tel: 0500 245345 FREEPHONE : 0808 800 6000 St. Helens Cancer Support Group Meet on the last Monday of every month at Millennium Centre, Corporation Street, St. Helens WA10 1HJ Tel: Denys Floyd: 01744 884097 Pat Bunting 01695 632233 Cancer Support Services Tel: 020 7613 2121 Freephone 0808 800 1234 Lyndale Knowsley Cancer Support Centre 40 Huyton Lane, Huyton, Liverpool. L36 7XG Tel: 0151 489 3538 St. Helens Central Carers Support Group Meet 1.00pm on the last Friday of each month at the Carers Centre, 31-35 Baldwin Street, St. Helens. WA10 2RS Tel: 01744 675615 12

7. Fever/High Temperature We strongly advise you to take your temperature every day and if the reading is 37.5oC or above, ring the contact numbers given and speak to the nursing staff. You will probably be asked to attend the Lilac Centre. You will have your blood tested before each chemotherapy treatment is due, to make sure they are at adequate levels. A normal temperature is 37oC. Please use your alert card. 8. Fertility Only certain cytotoxic drugs will make you infertile. Always discuss the possibilities of infertility with your Consultant before you start treatment. It is possible for women to get pregnant whilst having treatment, or their partners are having treatment. Pregnancy should be avoided during treatment and for a recommended six months after treatment has finished. Depending on the cytotoxic drugs prescribed some men will be offered the facility of sperm banking. The chemotherapy can make you infertile and although some men will find that their sperm count will return to normal after treatment has finished, this is not guaranteed. You will be given the opportunity to discuss these matters before your chemotherapy treatment begins. 9. Skin effects Some chemotherapy treatments cause the skin to become very dry and itchy. Whilst on treatment the 9

skin becomes more sensitive to sunlight than usual, therefore, a high factor sun cream should be used. Please seek advice from Lilac Centre staff if you experience any problems. 10. Urine Some cytotoxic drugs are bright red or blue in colour. This colour is passed out through the urine for a few hours after the treatment has been given.

GENERAL INFORMATION Oral tablets may be prescribed as part of your chemotherapy treatment. These will be prescribed and given free of charge from the hospital pharmacy. It is recommended that you do not have more than the occasional drink of alcohol. Try and live as normal a life as possible. During treatment women may experience changes to their menstrual cycle. Always use contraception throughout treatment and for six months after. Chemotherapy drugs will not have a permanent affect on your sexual performance, or your ability to have sex. We actively encourage people not to smoke. St. Helens Hospital enforces a No Smoking Policy. There is a Chapel in the hospital grounds. denominations are welcome.

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Some people wish to continue working whilst on treatment. There are no set rules on this - discuss it with your Consultant. Holidays are sometimes possible. Treatment can be adapted to fit around holiday plans.

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