Discharge Advice from Ward C10/U3 – For Non-BMT Patients

Introduction

Although you are well enough to go home there are still certain precautions to take and things to be aware of. Before you leave the ward one of the nursing staff will go through these with you to ensure you are aware of some of the early signs of complications that could occur.

Checking for infection

Prior to being discharged home you will be taught how to take your temperature. You should take your temperature in the morning and at night or if you feel unwell. You should ring immediately on the Dedicated 24-Hour Helpline Contact No. 01223 274 225 if:

• your temperature is 38°C or above for two readings within a twelve-hour period (at least one hour apart), or:
• your temperature is 38.5°C or above for one reading.

If you have any reason to suspect an infection (e.g. sore throat, shivers, cough, discharge from line, generally feeling unwell etc) take your temperature and phone the 24-hour helpline, whether you have a temperature or not. Always ring the emergency helpline and not your GP. When you are neutropenic you should not have Aspirin or Ibuprofen as a painkiller because they can hide a temperature. You may take paracetamol if you are feeling well and do not have a temperature but try to avoid taking it on a regular basis as it can hide a temperature. If you require regular painkillers, contact 24-hour emergency helpline and we will supply you with an alternative. Paracetamol gargles are OK as long as you do not swallow them. If you are neutropenic when you leave the ward or are going to become neutropenic the doctors will have prescribed some antibiotics for you to take orally at home. These are to try to prevent some of the more common infections occurring and it is important that you take them as prescribed.

Environment and Socialising

When your counts are low you are more likely to catch infections from other people. Because of this we advise you to avoid enclosed, smoky or crowded places, such as pubs, busy shops and cinemas at peak viewing times until your counts have fully recovered. If a member of your family or a friend develops an infection or you have been in contact with anyone who develops chicken pox, shingles, measles or Covid you should phone the 24-hour emergency helpline or your Clinical Nurse Specialist immediately as you will need your antibodies checked and perhaps a course of antibiotics.

Anaemia

Following chemotherapy, a fall in your haemoglobin (Hb) may make you feel tired and lethargic, short of breath or give you palpitations, dizziness or pallor. If you experience any of these symptoms you should contact the 24-hour emergency help line as you may require a blood transfusion, which could be given in the Haematology Day Unit.

Bleeding

A low platelet count will mean you are more likely to bruise or bleed. If you notice you are bruising easily or you start to bleed (e.g. from nose or back passage) then you should contact the 24-hour emergency help line. We may ask you to come back to have your platelet count checked, and if necessary to have a platelet transfusion in the Haematology Day Unit. Do not use Aspirin or Ibuprofen as a painkiller as these drugs thin the blood and will make you more likely to bleed. You will be provided with an alternative such as Codeine if required.

Mouth care & Visiting the Dentist

You should continue with your mouth care once you are at home. Examine your mouth when you perform mouth care for any signs of infection (e.g. ulcers or white spots). Contact the 24-hour emergency help line if you notice these. If you develop ulcers or your mouth becomes painful phone the 24-hour emergency help line because there may be other mouthwashes or painkillers, we can give you. We may also want to swab any lesions that have appeared in case they are infected and need treatment. If you are brushing your teeth make sure you use a soft baby toothbrush to prevent any damage to your gums. Should you need to visit the dentist please let the ward know. If your platelet and neutrophil counts are low, we would not want your dentist to perform any treatment without discussing it with Haematology doctors first.

Diet and Alcohol

The nurses and doctors will discuss with you before you go home whether or not you need to adhere to the "neutropenic diet". This will depend on your counts. Foods that you can and can't eat on this diet should already have been discussed with you and are listed elsewhere. Even if you don't need to keep to this diet (i.e. your neutrophil count is above 1), it is essential that you remain meticulous about normal food hygiene measures such as hand washing and comply with food storage instructions and "eat by" dates. You should avoid food from mobile vans and takeaway restaurants where the standard of hygiene might be questionable. It is also safer to continue to avoid unpasteurised produce. Try to eat a high calorie, high protein diet to build yourself up between courses of treatment and maintain a good fluid intake of two to three litres a day. It is usually safe to drink alcohol in moderation but check with the doctors first as alcohol may interfere with the action of some drugs. If you experience eating difficulties, such as a lack of appetite, taste changes, a sore mouth, or just want advice about a healthy diet please ask to be referred to the dietician.

Fertility and Sexuality

It is quite safe for you to have sexual intercourse in between courses of chemotherapy, providing your partner is well and has no infections. It is important for you, or your partner not to get pregnant whilst you are undergoing treatment so please take adequate contraceptive precautions. For women, the intrauterine device and the cap should not be used because of the infection risk. Women may find that they experience vaginal dryness. If this occurs, then you may use KY Jelly as a substitute. If your platelet count is low, it is important to be gentle and report any unusual bleeding to the 24-hour emergency helpline. For women who are pre-menopausal medication will be prescribed to stop your menstrual periods while your platelet count is low. There may be emotional and psychological factors that prevent you from re-establishing normal sexual activity. Macmillan Cancer Support have a useful booklet called Sexuality and Cancer. It is normal for sex drive to be reduced. If you are having relationship problems, it may be possible to see a trained counsellor. Please ask a member of staff for details.

Skin care

Your skin may become more sensitive or dry following chemotherapy. Use mild creams to relieve this, such as Epimax, Dermol500.

Going Back to Work, School or College

Your return to work depends on how quickly you recover and what your job entails. People with desk jobs that are perhaps less tiring and do not put them at such a high risk from infection may wish to continue with work in between courses of chemotherapy. However, people with manual jobs, mentally stressful jobs or jobs in which there is a high risk of infection (e.g. school teachers, nurses or those dealing with the general public) may need to spend a longer time away from work. It may be a good idea to return to work on a part time basis initially, as it can take some months before you return to full fitness. If you are at school or college, it may be possible to continue some of your studies at home. If you are unsure about when to return to work or college, the doctors will be able to advise you. If being away from work is causing financial difficulties or there is a possibility that you may lose your job, you can contact the Citizens Advice Bureau. There may be benefits that you are entitled to because of your illness. The medical team will be able to supply you with sick certificates for your employer throughout your treatment. It may be difficult to pick up the pieces of your life after treatment, especially when all treatment finishes. Macmillan Cancer Support have a booklet which may help. Talking to staff at the hospital can help and or joining a self-help group where you can meet and share experiences with people in the same position. Self-help groups can be contacted through the Macmillan Cancer Support, Blood Cancers website (opens in a new tab) and the Leukaemia Care Society website (opens in a new tab).

Travel and Holidays

While your counts are low you should avoid driving and try not to use crowded public transport. Once your counts begin to rise it is usually safe to start driving again but check with the doctors first. You should not take a holiday during the initial intensive phase of your treatment. If, at a later date you wish to go abroad, please check with medical staff first. They will be able to give advice on immunisations and arrange medical supervision in the area you wish to visit, so you may receive expert advice should you need it. You should take out standard medical insurance but check the small print to ensure you are eligible to benefit. If you have trouble getting insurance contact Macmillan Cancer Support.

Sport

You should avoid all contact sports, such as football, rugby and hockey. Swimming is not advised while you are undergoing treatment because of increased risk of infections etc. Gentle aerobic exercise, such as walking or cycling is good for you and may build up fitness, but don't overdo it.

Clinic appointments

When you are discharged from hospital your care will often continue on an out-patient basis. An appointment date and time will be given to you before you leave the ward. It is important you keep these appointments and if for some reason you are unable to make the date you have been given, please phone the clinic so that a new one can be made. If you require hospital transport, please speak to the ward clerk or the clinic receptionist who will be able to arrange this, but you must give them 72 hours’ notice.

Privacy & dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one to one care is required.