A patient information leaflet that may answer your questions about your follow-up care. Trachea (windpipe) Lining (pleura) Lymph nodes.

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1 Lung follow-up A patient information leaflet that may answer your questions about your follow-up care Trachea (windpipe) Lining (pleura) Lymph nodes Bronchus Bronchus Right lung Diaphragm left lung Heart

2 Foreword This booklet is for you because you have been caught up in the storm that is cancer. shore, though you may have to go through even rougher waters to get there. You were sailing along satisfactorily in your boat with everything you needed on board. Sometimes the seas were calm, sometimes the water was quite choppy but you weathered the problems, studied the map and kept going Unfortunately when you get to safety, you may find yourself experiencing more distress. You now have time to think, to realise how badly your boat has been damaged and how much equipment you have lost. Then suddenly the storm of cancer enveloped you. Your boat was blown all over the place, lashed by wind and rain so that you couldn t even see where you were going. Your equipment was washed overboard while you clung to whatever you could to save yourself from going over the side too. The medical team is your lifeboat. They have come out to you and are towing you to the You may feel stranded, facing a series of daunting tasks. You need to decide where you are going. You have to rebuild your boat and develop the strength to sail it again despite lost or broken kit and despite fearing another storm. But off you go...!! And this booklet is part of your new equipment. 2

3 Contents Foreword 2 Introduction 4 Your questions answered 5 My Personal Treatment Record Summary 9 Management and Support Plan 0 Your concerns and who to talk to - Helpful contacts local w general e My notes How to find us r y This booklet was written by the Hillingdon Hospital lung cancer team Front cover image: The Roy Castle Lung Cancer Foundation 3

4 Introduction This booklet gives information about your follow-up care for your Lung Cancer or Mesothelioma. It aims to answer some of the questions you may have about how you will be followed up at the hospital, who will see you and who to contact about your condition if you have any concerns between hospital appointments. After treatment follow-up After your treatment has finished, your condition will continue to be monitored either at the hospital or in the community. This is a good time to discuss with your doctor and nurse any problems you may have. Regular check-ups at the hospital will be offered, but if you prefer we can arrange for your follow-up to be with your local General Practitioner (GP), community nurses or our community clinic in Hayes. This leaflet tells you about how follow-up is arranged at the hospital. 4

5 Your questions answered Who will see me at the check-up appointments? At the hospital check-ups you will be seen by a specialist doctor, who is a member of the Lung Cancer Team, and the Lung Cancer Nurse. This doctor is called a Palliative Medical Consultant and their specialty is Palliative Care. This means helping to alleviate symptoms and concentrating on quality of life, by ensuring that you can live as comfortably and fully as possible. This is done by focusing on controlling pain and any other symptoms associated with cancer, as well as helping you with social, spiritual and emotional needs. in practical problems to do with financial issues, transportation or concerns within the family. It can bring with it changes in your emotions as you learn to live with your condition. Can I bring my family or carer to my appointments? We encourage active involvement of family and carers and welcome their attendance at the clinic. Addressing their concerns and need for support or information is important. What happens at your appointment? Your doctor and nurse will talk with you about how you are getting on. This is a good time to discuss any problems or new symptoms you may have. We know that having Lung Cancer or Mesothelioma can impact on many aspects of a person s life, causing physical symptoms such as breathlessness, cough or pain. It can result Every question I asked, they answered truthfully, in plain language that a lay man would understand. 5

6 What help can we offer? Your doctor and nurse are interested in all of your concerns and wish to help you to cope. They may: Offer specific advice about disturbing symptoms if they occur, such as pain, nausea and shortness of breath. Provide information about your condition and treatments such as chemotherapy and radiotherapy. Assist with family worries including advice on practical help in the home and advice on transportation and financial matters. Your check-ups may involve tests from time to time, if indicated, but routine scans are not generally used to monitor Lung cancer or Mesothelioma. Will I be prescribed any medicines like oxygen or inhalers? Your doctor and nurse will assess the medications you need to manage the symptoms related to your Lung Cancer or Mesothelioma. Oxygen is used to treat low levels of oxygen circulating in your blood. It is a drug and should only be used after an assessment by your doctor. It can be dangerous for certain groups of patients with lung disease who are oxygen sensitive. Offer emotional and psychological support in helping you and your family adjust to the changes in lifestyle your illness may cause. Refer you to support services such as community nurses who visit you at home or a social worker or a counsellor. Inhalers are devices that are designed to deliver medication directly to the lungs to relieve symptoms. They are more often used in conditions such as asthma and may not be as helpful in Lung Cancer or Mesothelioma. Your doctor will know if these medications would be helpful to you. 6

7 Other medications that may be used include: painkillers, cough medicines, steroids etc. In order to ensure these drugs don t interfere with your usual medicines, it is important that you bring all your usual medicines with you to the clinic so that we are aware of all the drugs you are taking. How often will I have check-ups? How often you have appointments depends upon your needs. If you have troublesome symptoms you may need to be assessed every month. However, if all is going well for you, appointments may be less frequent, every 3-6 months. Will I have any more treatments for my cancer? On occasion, it may be that further treatment from the oncologist or surgeon may be suggested for a particular symptom. We work closely together with these doctors and timely referral back for specialist opinions or treatment can be organised from this clinic. We have a flexible approach and aim to offer tailor-made follow-up support which meets your individual needs. You will be offered regular appointments; however, on occasions should you feel you need a more urgent appointment, we would be happy to bring your appointment forward. This means you can telephone and make an appointment at short notice (usually within a week or two). You can also have telephone advice and support in-between your appointments by telephoning your Lung Cancer Nurse. It s knowing who to call if I am worried about anything. 7

8 Will my GP and Community Nurse know about the appointments? What if I am too ill to come to the appointment? After you attend, your GP and your community nurse, if you have one, will be kept up to date on how your hospital followup is going. They will usually be sent a letter within a week of your attendance at the clinic. We work closely with the Community Palliative Care Team and District Nurses. For some people there comes a time when struggling to keep clinic appointments becomes too much for them. Under these circumstances, it is possible to refer your ongoing care to the community teams. If clinic attendance is a struggle, please talk to us. Are you worried about your appointments? Who do I call if I have problems in between appointments? Many people find their check-ups quite worrying. If you feel you are getting on with life, a doctor s appointment can bring all the thoughts about your cancer back to you. You may find it helpful to tell someone close to you how you are feeling. If you are able to share your worries they may not seem so bad. It is quite common nowadays for people to have counselling after cancer treatment. If you would like to talk to someone outside family and friends, let your doctor or nurse know and they can arrange for you to see someone. Learning to live with Lung cancer or Mesothelioma can be difficult and patients tell us they often worry about symptoms. Knowing who to call, and when, can be confusing especially as various health care professionals will give you their telephone numbers. On pages 12 and 13 of this booklet is a list of problems patients with Lung Cancer or Mesothelioma can develop and who to call. Whilst this is a guide it is not absolute and if you are concerned or confused about who to call, please talk to us. 8

9 My personal treatment record summary 9

10 My personal treatment record summary Your diagnosis is: The treatment you have had: Aim of the treatment: Ongoing services or treatment you will be receiving: Management and Support Plan Following your first assessment, you have identified the following key concerns, care needs or goals that you would like to see addressed, improved or achieved: As an outcome of the discussion it was agreed:

11 Suggestions on services available for you and healthy lifestyle advice Follow-up arrangement / Monitoring / Date of next review Assessment completed by: Name Title Signature of professional Contact details 11

12 Your concerns and who to talk to Normal cold or flu-like illness Common medical problems A cough with green or brown phlegm which might be a chest infection Contact your GP A problem to do with another existing medical condition (not your lung cancer) like high blood pressure or diabetes Gradually worsening symptoms These are common problems related to Lung Cancer and Mesothelioma and may change over days to weeks. An existing dry cough that is getting worse Increasing breathlessness that is not related to a recent cold or flu Streaks of blood in the sputum Feeling more tired than usual Weight loss, loss of appetite Contact your Lung Cancer Nurse Monday Friday 9am-4pm Side effects from treatment or medicines you are taking Pain in the back or chest area, or any pain that persists 12

13 Coughing up lots of blood Rare symptoms that need assessment within hours Troublesome swallowing, especially liquids Tingling/numbness in fingers or toes Weakness in your legs or arms A sudden swelling of an arm or a leg Drowsiness or more sleepy than usual Bad headaches that don t improve in a day or two Vomiting not related to a recent stomach bug If these occur during office hours contact your Lung Cancer Nurse Monday-Friday, 9am - 4pm Out of these hours please contact out of hours services via your GP or visit the Accident & Emergency Department at Hillingdon Hospital Practical worries or concerns Problems getting to the hospital for appointments Financial and family concerns Worries about managing at home Emotional concerns Concerns about taking your medicines Advice about diet and exercise A number of people can help you with these concerns such as your: Lung Cancer Nurse Community Nurse Social Worker Physiotherapist Dietician Local Counsellor/Psychologist 13

14 Helpful local contacts when dealing with Lung Cancer or Mesothelioma Contact What they provide Contact General Practitioner (GP) Palliative Medical Consultant Lung Cancer Nurse District Nurse Macmillan Nurse Michael Sobell House 24 hour advice line This is your family doctor This is the doctor who sees you in the Follow-up Clinic and monitors your Lung Cancer or Mesothelioma Specialises in cancer care and gives patients information and support Provides nursing care and practical advice while visiting you at home Provides advice on managing symptoms and coping with cancer, usually visiting you at home Provides advice on complex symptoms Name.... Tel.... Name. Secretary telephone number: Name.... Tel: Monday-Friday 9-4pm (answerphone) Name.... Tel: Name.... Tel.... Tel:

15 Helpful general contacts when dealing with Lung Cancer or Mesothelioma Contact What they provide Contact British Lung Foundation Mesothelioma UK Macmillan Cancer Support / Cancerbackup The Roy Castle Lung Cancer Foundation Provides information, newsletters and Support Groups Provides information to patients diagnosed with Mesothelioma via a helpline. Gives information on treatment and financial help Provides information and advice about many aspects of cancer including treatment, emotional effects and financial concerns Provides a range of free lung cancer booklets, factsheets and DVDs, helpline, support groups and on-line discussion forums There are many other sources of support and help available. Please talk to your Lung Cancer Nurse if you need further information about any aspect of living with your condition. 15

16 Your notes: 16

17 17

18 The Lung Follow-up Clinic and how to find us Transport Office Endoscopy Orthopaedics Children s A&E A&E A&E Entrance Fracture Outpatients Clinic Entrance Outpatient Booking Centre Harmoni Clinic League of Friends Café Tower Block Ground Floor Observation & Assessment Ward X-Ray Surgical Back Pain Appliances/ Clinic Orthotics Physiotherapy Occupational Health Departmentnt Area Floor A&E Tower Block G Admissions Green Zone 1 Alderbourne Rehabilitation Unit Green Zone G Alexandra Ward Maternity 3 Ante Natal Maternity G Back Pain Clinic Tower Block G Beaconsfield East & The Stroke Unit Green Zone G Bereavement Office Tower Block G Blood Tests Green Zone G Café - League of Friends Tower Block G Cardiology (ECG) Tower Block 1 Chaplaincy Centre (multi faith) Tower Block LG Child Development Centre The Furze G Churchill Ward Green Zone G CNWL Riverside Centre Riverside G CNWL Woodlands Woodlands G Coronary Care Unit (CCU) Tower Block 3 Day Care Unit Tower Block 1 Delivery Suite Maternity G Dental Outpatients Tower Block 1 Diabeticare Green Zone G Drayton Ward Tower Block 2 Elderly Day Hospital Green Zone G Elizabeth Outpatients Dept Tower Block 3 Endoscopy Tower Block G ENT Outpatients Tower Block 1 Fleming Cumberlege Centre Tower Block 4 Fracture Clinic Tower Block G Grange Ward Tower Block 5 Harmoni Clinic Tower Block G Hayes Ward Tower Block 6 Hearing Aid & Therapy Centre Green Zone G Hillingdon Consulting Rooms Tower Block G Intensive Treatment Unit (ITU) Tower Block 1 MRI/CT Ultrasound Shops PALS Cashier Social Services Hillingdon Consulting Rooms Main Entrance Trust Management Patient Affairs/ Bereavement Office Departmentnt Area Floor Jersey Ward Tower Block 7 Kennedy Ward Tower Block 8 Lister Ward Green Zone G Marina Ward Maternity 1 Middlesex Ward Green Zone G MRI/CT/Ultrasound Tower Block G Neo Natal Unit Maternity 1 Observation & Assessment Ward Tower Block G Occupational Health Tower Block G Occupational Therapy Green Zone G Oral Surgery Outpatients Tower Block 1 Orthopaedics Tower Block G Orthotics (Surgical Appliances) Tower Block G Outpatient Clinics 5-8 Tower Block 1 Outpatients Reception & Booking Centre Tower Block G Paediatric Outpatients G Pagett Ward Green Zone G Pathology Tower Block 1 Patient Affairs Tower Block G Peter Pan & Wendy Ward G Pharmacy Tower Block LG Physiotherapy Tower Block G Pilot Ward G Pinewood Ward Green Zone G Pre-Assessment Clinics Green Zone G Quebec Suite Green Zone G Restaurant (Choices) Tower Block LG Shops Tower Block G Social Services Tower Block G The Greenacres Centre Green Zone G Transport Office Tower Block G Tudor Centre (GUM Clinic) Green Zone G Voluntary Services Green Zone G X-Ray Tower Block G Thank you for all you have done. You have made my life a lot easier at a very difficult time. Pathology Day Care Unit Oral Surgery Dental Outpatients ENT Outpatients The clinic is normally held in a building called the Elderly Day Hospital. Outpatients 5-8 Cardiology (ECG) Intensive Treatment Unit (ITU) The easiest way to get to there is to use the hospital entrance located on Royal Lane and follow the signs. Tower Alternatively, Block First Floor if you require hospital transport for the appointment, please telephone the secretary or your Lung Cancer Specialist Nurse. 18

19 Elderly Day Hospital CNWL Riverside Centre Vehicular Entrance D COLHAM GREEN ROAD CNWL Woodlands The Furze Visitors Tudor Centre (G.U.M. Clinic) D Ante Natal Maternity Entrance Visitors Maternity Building B Peter Pan & Wendy Ward Paediatric Outpatients Pilot Ward Car Park Office A&E Entrance Outpatients Entrance Ramp Vehicular Entrance B A&E Outpatients Beaconsfield East & The Stroke Unit Hearing Voluntary Aid & Services Therapy Centre Occupational Therapy Choices Restaurant (LG) Pharmacy (LG) Hillingdon Consulting Rooms Quebec Suite Pinewood Ward Blood Tests Elderly Day Hospital Churchill Ward Link (LG) Shops Chaplaincy (LG) Tower Block Lower Ground Floor Middlesex Ward Lister Ward Vehicular Entrance A C The Greenacres Centre Pagett Ward Ramp Visitors Diabeticare Main Entrance Alderbourne Rehabilitation Unit Education Centre Visitors A PIELD HEATH ROAD Vehicular Entrance C ROYAL LANE STAIRS LIFTS CAFÉ PHARMACY PUBLIC TELEPHONE CASHPOINT STAFF CAR PARKING CAR PARK PAY MACHINE INFORMATION RESTAURANT WC MALE & FEMALE DISABLED WC BABY CHANGING SECURITY DROP-OFF POINT CAR PARKING FOR PATIENTS & VISITORS DISABLED CAR PARKING LINK CORRIDORS ENTRANCES 19

20 LANGUAGES / ALTERNATIVE FORMATS: Please ask if you require this information in other languages, large print or audio format. Please contact: TheHillingdon Hospitals NHS Foundation Trust Pield Heath Road Hillingdon UB8 3NN Hospital switchboard: Published: July 2010 Review date: July 2012 Code: PI 047 Web:

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