Going home and the future following an allogeneic transplant Introduction .......................................................................................... 2 Check list for going home .................................................................... 3 Going home – what should I expect? .................................................. 7 General precautions and care required ............................................... 9 Infection risks .................................................................................. 9 Vaccinations .................................................................................... 10 Personal hygiene ............................................................................ 10 Hair.................................................................................................. 10 Nails ................................................................................................ 11 Mouth care ...................................................................................... 11 Dentist ............................................................................................. 11 Central venous catheter or PICC line .............................................. 11 Skin care ......................................................................................... 11 Eye care .......................................................................................... 12 Home environment .......................................................................... 12 Pets ................................................................................................. 12 Building work ................................................................................... 12 Socialising ....................................................................................... 13 Nutrition ............................................................................................... 13 Drinking and fluids ............................................................................... 15 Smoking .............................................................................................. 15 Medication ........................................................................................... 15 GvHD (Graft versus Host Disease)...................................................... 16 CMV .................................................................................................... 17 Blood products .................................................................................... 17 Low platelet count ............................................................................... 18 Low haemoglobin ................................................................................ 19 Resuming your activities – exercise .................................................... 20 Personal relationships and sexuality ................................................... 21 Following a transplant .......................................................................... 22 Holidays ............................................................................................... 23 Driving and transport ........................................................................... 23 Emotional reactions ............................................................................. 24 Hospital chaplains ............................................................................... 25 Returning to school or work ................................................................. 25 Sleep ................................................................................................... 26 When precautions can stop ................................................................. 26 Outpatient follow-up ............................................................................ 26 Conclusion ........................................................................................... 27 Useful leaflets ...................................................................................... 28 Blank pages for your own notes .......................................................... 29
GOING HOME If you have had an allogeneic transplant, either from a sibling (brother or sister) or from an unrelated donor your main contact and key worker after your discharge will be the transplant nurse clinician Tel: 0161 446 8488 If you feel unwell or need advice please contact The Christie Hotline, accessible 24 hours a day: 0161 446 3658
Introduction This booklet is intended to provide you and your family with information about going home following your allogeneic stem cell transplant. Please feel free to ask further questions and discuss any problems you might encounter when you return home. Remember there is no right or wrong question and no concern is too small to receive attention. Blank pages have been provided at the back of the booklet to list any questions you may have. Before discharge, the transplant co-ordinator or nurse clinician will discuss going home with you. They will plan your follow up care and refer you to the community staff as necessary. This is an ideal time to ask questions and discuss the future. Our aim is to help you make a good recovery, enabling you to return to a normal lifestyle as quickly as possible. This information may seem lengthy so we suggest that you read it in sections. It covers information on discharge following completion of your transplant and what to expect in the future. There is a check list on pages 3 to 6 which explains the main points covered in the booklet.
761 Going home after an allogeneic transplant Page 2 of 31
Check list for going home When you go home you will normally be able to walk around, care for yourself, be able to eat small amounts and have a normal temperature.
Before you go home – please:
Ask to see the transplant co-ordinator or transplant nurse clinician and make sure you have written discharge information.
Ask to be referred to the community nurses if you have any nursing needs or require general support.
If you live alone and need help with cooking, personal hygiene or housework, carer support may be arranged for you. This needs to be arranged a few days before your discharge.
Ask to see the occupational therapist if you are having difficulty performing normal activities of daily living or require any aids, for example commode or stair rails.
Ask to see the physiotherapist if you are having difficulty moving or walking.
Ensure you have a Tuesday morning outpatient appointment for review in the transplant clinic. The ward staff will arrange this for you. If you are discharged on a Monday or a Tuesday, you may need to return on a Thursday morning for review by the nurse clinician.
Ensure you have been given your take-home drugs and completed your drug card with the discharging nurse before going home.
Please ensure your central venous catheter or PICC line is flushed and re-dressed before discharge. This should be reviewed weekly in outpatients. If you have any problems with your line, please let us know.
Ask to see the ward clerk if you need transport home or to your first outpatient appointment. This needs to be arranged 48 hours in advance. You will need to make all further transport bookings yourself 48 hours before the appointment. Christie transport enquiries 0161 446 8143.
Ensure you have a digital thermometer and you know how it works. Be aware of who to call if you have a temperature.
If you have been having nutritional supplements, please ensure that you have been given a supply of these to take home. If you have concerns about your appetite and have not been under the care of a dietitian, ask for a copy of the booklet ‘Eating: Help yourself’.
761 Going home after an allogeneic transplant Page 3 of 31
When at home
It is common to feel a little vulnerable or apprehensive, emotional or irritable, and to experience lack of concentration and motivation. This will normally improve with time.
If you or a member of your family feels low in mood or concerned and would like someone to talk to please talk to your nurse clinician. A number of services are available for example, referrals to counsellors, more written information, complementary therapy, stress management and information on support groups or Haematology and Transplant Support (HaTS).
It is normal to feel very tired, to have aching muscles and to feel frustrated that you are unable to do more. Often people also feel quite cold. It is important to move around and do gentle exercises, for example walking. We will give you some written information about exercise after transplant.
Please take your temperature daily, or if you feel unwell. If your temperature is above 37.5°C, is below 36oC or if it is normal but you feel unwell, please ring The Christie Hotline immediately on 0161 446 3658. This is very important as any delay could cause you to become extremely unwell. You should also ring the hotline immediately if you are: not eating or drinking; have developed any new symptoms for example rash, diarrhoea, constipation, uncontrolled vomiting, breathlessness, dizziness, urinary problems, unexplained bruising or bleeding or if you are unable to tolerate medication.
Take your medication regularly as prescribed.
Bring your medication and drug card with you when you attend outpatient appointments. Ask for more drugs to be prescribed as required and for your drug card to be updated.
Do not take your ciclosporin on the morning of your clinic appointment, however please bring the morning dose with you and take it once you have had your blood test. If the dose needs to be changed you will be told by your doctor or the nurse clinician. Often this is done by contacting you by telephone following your morning appointment.
Please avoid grapefruit when on ciclosporin – this can affect the levels of the drug.
It is advisable to continue good food hygiene at home after your transplant. See Nutrition page 13.
Wash fruits and vegetables well, and eat food within expiry dates. It is usually fine to have freshly cooked meals in restaurants and take-away food. However, do not eat doner kebabs or fried rice from these establishments or food from mobile vans.
761 Going home after an allogeneic transplant Page 4 of 31
Try to eat small and frequent meals and snacks for example: every two hours. Your appetite may come and go, so it is important to make the most of the times you feel like eating.
Keep hydrated – aim to drink 2 to 3 litres per day.
At first it is usual to have taste changes and a dry mouth, please ask for mouthwashes or mouth gels.
It is OK to socialise and go out, but try to avoid anyone with an infection, very smoky, crowded areas and busy public transport.
Use normal hygiene precautions for example, wash hands, use disinfectant sprays in the kitchen and bathroom and wear gloves particularly if you have to do any dirty work such as gardening. Avoid any jobs that would cause you to cut or bruise yourself. If you have pets, it is fine to stroke them, but please wash your hands afterwards. You are advised not to empty cat litter trays in the first few months following transplant; ask someone else to do it.
Your nails and skin can be delicate or sensitive and sunlight can burn your skin much faster than usual especially when taking some of your anti-fungal medication. We therefore strongly suggest you use high factor sun creams and wear loose-fitting clothing and a hat.
Unfortunately most people lose their hair during treatment. However, your hair will grow back typically about 3 to 6 months after your treatment is complete. Contact the cancer information centre at The Christie (department 7) for information about being referred to the wig service. Headstart at The Christie gives demonstrations of how to wear scarves and hats. ‘Look good feel better’ runs workshops and gives advice to help you look and feel your best during and after cancer treatment. Contact the cancer information centre for more information.
It is a common occurrence to require regular blood and platelet transfusions as an outpatient. All of your blood products will need to be IRRADIATED for the rest of your life. You will be given written information about this at discharge. If you need further information please speak to the transfusion nurse specialist, your doctor or the nurse clinician.
At home it is normally OK to have close contact with family members and resume personal relationships. However, your sex drive may initially be affected by treatment and its side effects. This will usually improve with time. If you do have sexual intercourse, please use a condom to prevent infection and pregnancy. Unfortunately your bone marrow transplant will in most cases render you infertile, please see page 20 for further information. If you do have any long term problems please speak to your nurse clinician or transplant coordinator for advice. You may need a referral to another team.
761 Going home after an allogeneic transplant Page 5 of 31
Please check with the doctor or nurse clinician before going to the dentist, optician, starting new medication, having injections, vaccinations, or for women having a smear test. Avoid aspirin, ibuprofen and suppositories or enemas. You may take paracetamol as prescribed for minor aches and pains.
As soon as your blood counts are satisfactory and you feel you can concentrate it is usually safe to start driving again, but you should check with your doctor or nurse clinician first.
Once you have recovered sufficiently from your transplant it is normally possible to return to work and to go on holiday - but please check with the team first. If you have any problems with insurance, please contact the nurse clinician, or Macmillan cancer support on 0808 808 0000. It is advisable to take a letter explaining your treatment with you on holiday. Please ask the doctor for this when you attend outpatients.
If you have any financial concerns, please contact your nurse clinician or transplant nurse for an appropriate referral.
Unfortunately if you develop an infection or encounter any other problems related to your allogeneic stem cell transplant you will need to be readmitted following discharge.
You will require special regular blood tests and procedures as an outpatient these will be discussed with you at the appropriate time.
If you have had total body irradiation it is possible that you will feel extremely tired and possibly develop flu-like symptoms about 6 to 10 weeks following your admission to hospital. This is normal and will pass. However if it is causing concern or distress please speak with the team during visit to the clinic.
Going home can often be quite daunting; however there is always someone for you to speak to if you have any concerns. Your nurse clinician/transplant coordinators are usually available Monday – Friday 9am to 5pm and the ward is always staffed for general questions. Please remember we would not let you go home unless we felt it was safe.
Ring The Christie Hotline immediately, day or night, with any problems or concerns. We are always here to help. Tel: 0161 446 3658.
Please find more detailed information and explanations regarding the above guidelines in the following text.
Best wishes!
761 Going home after an allogeneic transplant Page 6 of 31
Going home – what should I expect? Returning home following treatment is usually a very special time for you and your family. Anticipating going home is often exciting. However, after spending many weeks in hospital in isolation rooms, it can also be a worrying time. This is a natural response shared by most patients who have had a transplant. However, people’s responses vary. Below are some points which may be of interest to you:
When you go home, you will normally be eating at least small amounts, be able to walk around and to care for your own hygiene needs. You may, however, feel quite tired and a little vulnerable.
Some people feel happy and ready to leave hospital. Others are fearful of being away from the security of the ward and team.
Some people adjust easily to home life and have no problems.
Many people describe their journey home as noisy, hectic, fast or colourful, and sometimes find the outside world overwhelming and frightening. Reunion with family, friends and pets is often emotional.
Family members may be concerned about the responsibility of caring for a child or partner without the constant presence of hospital staff. Feeling confident and comfortable at home is a process that can often take time.
Resuming your home life means becoming accustomed to living together as a family again which can feel quite strange at first particularly if you have spent a long time in hospital. The need for some continued precautions and hospital visits can add stress to your family life.
You may find family members especially children show their frustrations and jealousy towards you by acting differently.
Couples may feel awkward together following separation, or sometimes the illness can bring you closer together. Counsellors are available for both you and your loved ones if required. Ask your nurse for a referral or speak to the information centre for further information.
It may be difficult at first to resume old friendships because your experience may have changed both your and your friends’ perception of life.
Young adult patients may find it difficult. Feelings may fluctuate; sometimes wanting to feel independent and viewing parents as being over-protective and involved, and other times feeling insecure and wanting parents close by.
Going home is a time of convalescence and recovery.
You and your family may expect you to feel and act as you did before your illness or during your treatment, but this does not always happen immediately.
Many patients have feelings of weakness, lethargy, fatigue and decreased appetite often leading to frustration. This can often continue for many months. 761 Going home after an allogeneic transplant Page 7 of 31
Sometimes initially going to big or busy shops can feel quite frightening and overwhelming.
People sometimes complain of feeling irritable, of having no motivation, a poor memory, and lack of concentration. Often feelings become more obvious on discharge home, such as anger, loneliness, sadness, loss of control and loss of independence.
Changes in your body image may be difficult to come to terms with at first.
Some people have found going home an anti-climax; however do worry about the future.
Many people find at some point during or after their treatment (occasionally months or years later) they can feel quite emotional or low in mood. This is a normal reaction following stress.
The advice of those who have had these experiences is to remain as calm, patient and as confident as you can and to ask for help and advice if you are struggling. Gradually you and your family can try to regain a sense of balance and comfort in your life and start to return to normal. It can take some time to regain your strength, but try to return to some of your normal activities as soon as you can. This usually helps to make you feel better. Following discharge home, if you feel unwell, have any problems, get an infection or need a blood transfusion, it may be necessary for you to be re-admitted to hospital. Try not to become too despondent if this happens. It is, unfortunately, quite a normal occurrence and should not be seen as a major setback. Before going home you will see the transplant co-ordinator or nurse clinician. The nurse clinician will be your main contact and key worker for you from your discharge onwards and will be able to provide support, advice, information, answer questions and deal with any ongoing communication between the teams that may still be caring for you. You can contact the nurse clinician on the phone, by email or in person when attending the HTDU out-patient department. The nurse clinician can arrange local community nurse support, for example district nurses, health visitors and support nurses if required . The doctors, ward nurses, other nurse specialists, outpatient team and hospital counsellors are also available for support and advice following discharge. Please remember we are always only a phone call away! Please do not hesitate to ring with any queries, regardless of how trivial you may believe them to be, at anytime during the day or night. Phone 0161 446 8488.
761 Going home after an allogeneic transplant Page 8 of 31
General precautions and care required Infection risks When you are discharged home, your white blood count will normally be above 1.0 and neutrophils above 0.5 and therefore at a satisfactory level to meet most of the challenges of everyday life. However, your immunity will be reduced and you will still be at some risk from infection for months or even years following treatment. It is, therefore, necessary to take the following precautions:
Ensure you have a digital thermometer at home and know how to use it. Know who to call if it shows an abnormal reading. The ward staff can supply you with one if necessary and will teach you how to read it. It is advisable to monitor your temperature once a day at first. If at any time you feel unwell, take your temperature straightaway. If it rises above 37.5°C or you are unwell with a low or normal temperature contact The Christie Hotline immediately, day or night on 0161 446 3658. It is extremely important that you do this or you could become very unwell at home.
If you have any of the following symptoms or just feel unwell, please inform The Christie Hotline immediately: a) Flushed skin, sweating or shaking. b) Coughing, sneezing, shortness of breath, chest discomfort (a number of people have a slightly runny nose on discharge probably due to having lost the hairs in their nose – if this occurs please just mention it to the doctors but do not worry). c) Any redness, swelling or pain in your throat, eyes, ears, skin, limbs, joints or abdomen. d) Blurred vision or other changes in your ability to see clearly. e) Frequency or burning on passing urine or changes in the colour of your urine. f) Redness, swelling, oozing or pain around your central venous catheter or PICC site. g) Rectal pain, diarrhoea or constipation. h) Small blisters or sores around your mouth, or any other part of your body. i) Increased nausea and vomiting or indigestion, or not eating and drinking. A small amount of nausea is, unfortunately, normal following treatment and may come and go for some time. It is important to take anti-sickness tablets regularly if you feel sick and as much nutritious fluid and food as possible. j) Skin rashes, itching or other changes in skin colour. k) Unexplained bruising or bleeding.
You will be more susceptible to certain viruses, particularly the one that causes chickenpox and shingles. If you are exposed to anyone with these infections, ring the Hotline so that appropriate preventative treatment can be 761 Going home after an allogeneic transplant Page 9 of 31
given. It is unusual for you to contract measles, or any other childhood-type illnesses, so do not become over-concerned. However, always ring The Christie Hotline if you are worried, or develop any new symptoms. Vaccinations At any time in the future, if you require any immunisations such as polio, boosters or vaccinations for going abroad, please check with your doctor or nurse clinician first, as you are not advised to have any “live” vaccinations. However, you are able to have inactivated vaccines, so it should not stop you going abroad. Also, if you are in close contact with young children having live vaccinations, it is advisable to contact the hospital for advice. Following a stem cell or bone marrow transplant you will need to be revaccinated at one year post transplant as long as you are no longer on ciclosporin or other immunosuppression. Your doctor or nurse clinician will advise you when the time is right. A copy of the schedule for revaccination will be given to you and one will be sent to your GP. Personal hygiene Personal hygiene continues to play an important role in preventing infection. a) It is recommended to have a bath or shower daily using a mild soap, and to pay careful attention to your underarms and groin which are likely to be more sensitive than usual. If you have a central venous catheter or PICC in situ, it is not advisable to allow the line to soak in the water while you are taking a bath. You can cover PICC lines with cling film. b) We suggest you use your own face cloth and towel and change them frequently. c) You need only take normal hygiene precautions, such as hand washing after going to the toilet, before eating or preparing food, or after touching pets. d) Contact lenses may be worn; however, special care should be taken to ensure they are thoroughly clean before wearing. e) You may wear make-up. Hair Hair re-growth usually occurs almost straight away following initial chemotherapy, but unfortunately, can take three to six months after a transplant. Your hair may grow back a slightly different colour or texture. Please ask a member of nursing staff if you need a wig. You can also ask to see someone who will show you how to tie scarves. There is also a Macmillan Cancer Support booklet on hair loss which you may find helpful - you can get a free copy from the cancer information centre at The Christie or by contacting Macmillan Cancer Support. Please try to discuss any of your concerns with the nurse clinician or ward staff who will do their best to help.
761 Going home after an allogeneic transplant Page 10 of 31
Nails Sometimes white moon shaped lines can be seen on your nails during treatments. Following a transplant, due to new cell growth, new nails may grow and as they do your old nails may gradually split or fall off. If they start to catch on your clothes it may be useful to cover them for a short period with a see-through dressing such as tegaderm or opsite. This usually occurs 3 to 4 months after transplant but is normally only a temporary problem. Try to keep your hands clean and dry. Mouth care When you go home, your mouth may feel fine. However it may be dry, you may have an excessive amount of saliva, it may be slightly sore or your tongue may be coated. You are more likely to be prone to mouth infections than normal. It is, therefore, important to continue with good mouth care, using mouthwashes and cleaning your teeth with a soft toothbrush and toothpaste containing fluoride after each meal if possible, or at least twice a day. When your platelet count is over 50, you can use a normal toothbrush. If you wear dentures, it is important to keep them clean. We advise you to soak dentures every day for half an hour in a conventional denture cleaner, then rinse thoroughly in tap water. The Christie booklet ‘Eating - Help Yourself’ gives suggestions on ways of dealing with dry and sore mouths - please ask for this. Lubricating mouth gels are also available to try. Dentist During your treatment and up to approximately 6 months following treatment, we recommend that you avoid having non-essential dental work. If dental works such as tooth extractions, fillings or braces are necessary, the doctors can liaise with your local dentist about taking precautions such as antibiotic cover if required. Please discuss any problems with a doctor or nurse when you come to the HTDU, and check with your doctor and nurse clinician before you return to the dentist. Central venous catheter (long line) or PICC line Before going home, your central venous catheter should be re-dressed. It can then be left until your next visit to the hospital in up to a week’s time. After this, the line should be flushed every week and will normally stay in until you no longer need blood or platelet transfusions. If you have any concerns or your line becomes red, sore, inflamed, or oozes fluid or pus please contact The Christie Hotline 0161 446 3658. Skin care Your skin may be quite sensitive and dry or flaky for some time after treatment. It is quite safe to use mild creams such as E45 or aqueous cream. It is advisable to avoid sunbathing during the first year after treatment and especially when on anti-fungal therapy such as voriconazole, as you can burn a lot faster than normal. You can go out in the sun, but wear a high factor sunscreen cream, loose fitting clothes and a sun hat. Any new rash should be reported to a doctor immediately. Following a bone marrow or stem cell transplant from a donor, if you have developed GvHD of the skin, you will need to be extra careful in the sun. 761 Going home after an allogeneic transplant Page 11 of 31
Eye care You may find that straight after treatment, your eyes are dry, itchy and sensitive or your focus may be slightly affected. If this happens you should not wear contact lenses, and you should be very cautious about wearing eye make-up. Eye drops can be prescribed to help any dryness. We do not suggest you go to an optician immediately following treatment, as any problems with your eyes normally improve quite quickly. Please first ask the doctor or nurse clinician for advice. There is a small possibility that patients who have had total body irradiation as part of their transplant treatment will develop cataracts some years after their transplant. This is a cloudiness of the lens of the eye and can be treated quite easily. This will be discussed with you in clinic. Please inform the doctors if you develop any problems, and you should have your eyes checked regularly every year by an ophthalmologist. Home environment When you are well enough to go home, you can return to your normal environment. However, it is important to take some extra measures to avoid picking up infections. Although you do not need to go to extremes, it is advisable to keep your home free of excess dust and dirt and to use a disinfectant in the kitchen and bathroom. It is fine to have plants and flowers in your house, but advisable to wear gloves if you are gardening, changing nappies or doing other dirty jobs. Avoid any heavy work or jobs that may put you at risk of bruising or cutting yourself. Wash your hands before preparing or eating food and after using the toilet. Pets Pets are often very important parts of your home life and give you a great deal of pleasure, so please do not be worried about being with them again. However, it is advisable to take some common sense hygiene measures. For example, discourage them from licking your face and keep them away from food preparation areas. It is best to avoid cleaning cat litter boxes, bird cages, fish bowls, turtle tanks, and to avoid animal faeces for about 12 months after treatment. Ensure litter trays are changed daily. You should worm your cats and dogs regularly. It is most important that you wash your hands after handling your pet. Building work There is strong evidence that building dust can increase the risk of infection with a fungus called Aspergillus. We advise you to avoid such areas and postpone any such work in your home for at least six months.
761 Going home after an allogeneic transplant Page 12 of 31
Socialising If someone living in your home has a cold or is unwell, you should try to avoid close physical contact but otherwise do not worry. However, if you come into contact with someone with a virus such as chickenpox, measles or a chest infection, do consult your doctor. It is best to avoid very enclosed crowded places such as public transport and GP surgeries and to avoid people generally with coughs, colds and viruses. However, it is probably more important that you go out when you feel able and return to your normal life as soon as possible, for example, it is fine to go to pubs, out for meals or to the cinema, but go during quieter periods. Please note - Many people feel quite cold when they first go home, so we advise you to dress warmly. If you feel very cold or experience shivering, take your temperature and contact The Christie Hotline (0161 446 3658) if it goes above 37.5oC or it is low or normal but you are feeling unwell.
Nutrition When you go home you will continue to have a low immune system for a while. You should therefore continue to follow the following diet until your doctor or nurse tells you it is safe to stop. If your white cell count is above 1.0 and your neutrophils above 0.5, you no longer need to follow the clean diet restrictions as you may have done in hospital. Until your neutrophil is more than 2, it is advisable to avoid high risk foods as outlined in the table below. Avoid All unpasteurised dairy products e.g. milk sold on local farms Soft cheeses made with unpasteurised milk e.g. feta and some hard cheeses such as parmesan
Alternatives Any pasteurised milk, soya milk, Jersey milk or UHT milk Cheeses made with pasteurised milk, processed cheese e.g. Dairylea, Kraft, Philadelphia, mesh and halloumi
Homemade/deli paneer and labnah
Pasteurised parmesan, pasteurised mozzarella. Paneer made with pasteurised milk.
Blue veined cheeses e.g. Danish blue and Stilton. Raw or lightly cooked shellfish Raw/undercooked meat, poultry or fish e.g. meat which is still pink, sushi, caviar and oysters
Vacuum-packed pasteurised and hard cheeses e.g. Cheddar and Edam Well-cooked shellfish e.g. prawn curry Well-cooked meat, poultry and fish; tinned meat and fish
Smoked meats e.g. salami
Vacuum packed cold meats such as turkey and ham stored 3°C and eaten following the manufacturer’s instructions 761 Going home after an allogeneic transplant Page 13 of 31
Avoid smoked salmon unless eaten directly from a freshly opened packet Raw eggs or undercooked eggs e.g. homemade mayonnaise, homemade ice cream, mousse, egg-nog, meringue, hollandaise sauce, and béarnaise sauce. Any dressing containing raw eggs e.g. home/restaurant made Caesar salad dressing. Probiotic or “bio” foods, drinks or supplements e.g. Yakult, Actimel, ProViva. Yogurt which is described on the label as ‘bio’ or ‘probiotic’ Meat paté, vegetable paté
Vacuum packed fish eaten straight from a new packet. This includes smoked salmon. Hard boiled eggs; shop-bought mayonnaise and other products made with pasteurised egg.
Any yogurt that does not describe itself as bio or probiotic including live, plain, Greek and fruit yogurts.
Pasteurised paté and paste in tins or jars that do not need to be refrigerated.
Pepper: added at the table or to food items after cooking
Good hygiene practice is essential when preparing foods, for example thorough hand washing, using separate chopping boards for raw and cooked foods, and using separate clean utensils when preparing, cooking and serving foods. All foods should ideally be freshly cooked and served piping hot. Avoid any reheating of dishes once cooked. However, if a dish is freshly cooked and then immediately frozen, ensure it is thoroughly defrosted and cooked until piping hot before serving. All convenience or processed foods should be stored and cooked as recommended by the manufacturer. It is recommended that all foods be eaten by the “best before” date. You may have take-away food and go out for meals but choose trusted and reputable venues. Usually, large fast-food chains have high standards of hygiene. It is advisable to avoid fried rice, doner kebabs and salads when eating out. Many people have difficulty eating after treatment and it may take a while for your eating pattern to return to normal. The most common problems are: -
taste changes, food and drinks can taste different or not taste of anything this can last for several weeks. loss of smell - this can also affect your sense of taste decreased appetite sore mouth dry mouth diarrhoea 761 Going home after an allogeneic transplant Page 14 of 31
These problems will improve with time. Eating well helps ensure that your body has the energy and nutrients needed to rebuild damaged tissue, fight infection and cope with treatment side effects so it is important to try to eat a variety of foods to provide a balanced diet. At first it is often helpful to eat small amounts regularly. If you have lost weight, it may take some time to regain it so try to be patient and aim for small steady gains. If you need further information about regaining weight or eating with a poor appetite, ask for a copy of the “Eating – Help Yourself” booklet. You can also ask to speak to the dietitian or the nurse specialist. We can also arrange for you to be given nutritional supplements.
Drinking and fluids A good fluid intake is important to aid your recovery. You should try to drink a total of 2 to 3 litres (3.5 to 5.5 pints) each day. Try to have some nourishing drinks such as milk and milkshakes. You may drink alcohol unless otherwise advised, but too much alcohol may at first slow down the recovery of your platelet count.
Smoking You are advised not to smoke and to keep away from any smoke-filled areas. Smoking is likely to make you much more prone to serious infections and therefore affect your response to treatment. There are hospital leaflets on ways to help you stop smoking, please ask the staff for details or visit your GP for help with smoking cessation.
Medication You will need to take some drugs when you go home and we normally give you a week’s supply. It is essential that you take this medication as prescribed. If you are unable to take your medication for any reason such as sickness, please ring The Christie Hotline (0161 446 3658) straightaway. If you do not understand what the drugs are for or when to take them, please do ask. A nurse will go through your tablets with you before you go home and help fill in your drug card. When you come to the outpatient clinic, please bring your drug card and drugs with you, so the doctor or nurse clinician can review your medication and alter your prescription as appropriate. Before leaving, please ensure you have enough tablets to last until your next clinic visit. Different people will be on different drugs: these may include the following: Ciclosporin A This drug helps to control GvHD (see page 16) in people who have had a transplant from a donor. The side effects can temporarily include fluid retention, tremor, and kidney problems and sometimes increased bodily hair growth; these problems will usually stop on discontinuing the ciclosporin A - if you notice any of these side effects, please tell your doctor or nurse when you come to clinic. We will take regular blood tests to monitor any adverse effects of the drug and ensure you have the correct dose. The dose can change quite frequently and you will be called at home with dose changes 761 Going home after an allogeneic transplant Page 15 of 31
following your clinic appointment. You should not stop taking ciclosporin without the advice of your doctor or nurse. You normally stay on this drug for about 3 to 6 months following transplant, but this will vary on an individual basis and will be discussed with you. On your clinic days, you should not take your ciclosporin dose until after you have had blood taken, so we can check your levels. Therefore please bring your ciclosporin with you to clinic, and take the dose once you have had your blood taken. When you are on ciclosporin please avoid eating grapefruit. Steroids The side effects of these are usually temporary but can include fluid retention, increased risk of infection, increased appetite, emotional problems, muscle wasting and stomach ulcers. You can carry a steroid card with you which the pharmacy will supply. Do not stop taking steroids suddenly or without the advice of your doctor or nurse. Drugs to stop infection You are likely to stay on a number of drugs to help prevent infection for some time following treatment, for example septrin, acyclovir and posaconazole. If you are unable to take any of these medicines please inform a member of the medical or nursing staff, so an alternative can be arranged. If you have a transplant with total body irradiation, you are normally commenced on penicillin following discharge. Pain relief You can take paracetamol as directed on the bottle (unless the doctor has advised you not to take it) for any slight aches or pains but if symptoms persist, please contact The Christie Hotline (0161 446 3658). Do not use aspirin or ibuprofen without advice from the doctor. Maxolon or metoclopramide (two names for the same drug) This is given for nausea. Sometimes it has a strange side-effect that makes you feel anxious and fidgety. If this happens, please stop taking it and contact the ward to prescribe a different anti-sickness drug.
GvHD (Graft versus Host Disease) GvHD is a problem that you may develop if you receive an allogeneic transplant from a donor (i.e. your brother or sister or unrelated donor). It is caused by a reaction of the donor’s marrow to your body. Symptoms may be mild or severe and may develop at any time. We will give you medication to prevent GvHD, for example ciclosporin, so it should not be a problem. However, it is essential that you contact your doctor or nurse if you notice any new symptoms at any time following your transplant such as:
761 Going home after an allogeneic transplant Page 16 of 31
a rash or itching – especially on the palms of your hands or the soles of your feet diarrhoea, or changes in bowel movements skin or eyes that appear dry or sore, or any change in colour urine that becomes dark in colour chest problems a sore mouth/throat indigestion, poor appetite, stomach pain. If you develop GvHD, the doctors and nurses will explain the treatment plan to you. Sometimes you may require readmission to hospital and/or treatment for prolonged periods. You may also be prone to infections for an increased length of time. The nurse clinician or doctor can provide more information if required.
Cytomegalovirus (CMV) CMV can occur following an allogeneic transplant dependant upon previous infections that you and/or your donor have had. Previous CMV is not a reason not to go ahead with the transplant but it can reoccur, usually at very low levels, following transplant. This occasionally requires temporary readmission to hospital and having intravenous drugs, for example ganciclovir or valganciclovir orally, for some time. Symptoms of CMV may be non-specific and include feeling generally unwell, a raised temperature, heartburn or breathlessness. Please contact The Christie Hotline (0161 446 3658) with any new symptoms. If you are considered to be prone to developing CMV a blood test will be taken on a regular basis, usually at each clinic visit. Sometimes you may not be physically aware that this virus has become active, and the very sensitive blood tests that we perform can pick this up very early. Please note: Following a transplant you will need special blood tests at regular intervals. This will enable us to check your CMV status, your engraftment status, and to check your ciclosporin levels. You may also need intravenous drips of immunoglobulins to help your immune system. You will be sent letters in the post informing you when you are due to have routine post transplant investigations such as bone marrow tests, lung tests and heart tests. If you receive these please take the letters with you to your next outpatient appointment.
Blood products For some time after treatment, you may need blood or platelet transfusions. This is quite normal. They can usually be given to you as an outpatient. Following a transplant, you should have irradiated blood which is shown by a special sticker on the transfusion bags. Before discharge ensure that you have received the patient leaflet “Information for patients needing irradiated blood.” Your ward nurse or doctor can provide this for you. 761 Going home after an allogeneic transplant Page 17 of 31
If you normally have Piriton with platelets, please make the nurse looking after you is aware of this. To avoid transfusion of non-irradiated products in the event of an accident, you may wish to wear a Medic-alert bracelet available from Medic-alert: Tel No: 01908 951045.
Low platelet count If you have symptoms of a low platelet count, please ensure the doctors are aware and if they change or increase, please contact The Christie Hotline straightaway on 0161 446 3658. Symptoms can include: bleeding gums pink urine bruising or petechiae (tiny pin point, purplish red spots on the skin)
nose bleeds black or red stools cuts that will not stop bleeding headaches.
If you have an injury that causes bleeding, you may feel frightened, but try not to worry and keep calm. The following first aid principles may help you. A cut If you cut yourself, put a clean dry gauze, pad, towel or cloth over the cut and press firmly. Continue applying pressure until the bleeding stops. If the bleeding continues, elevate the wound (for example, raise your arm), apply ice and notify The Christie Hotline on 0161 446 3658. A nose bleed If you have a nose bleed, sit up and lean slightly forward. Squeeze the bridge of your nose between your thumb and forefinger. Do this for 10 minutes without letting go. If the bleeding persists, continue to squeeze your nose. Apply a small bag of ice (or frozen bag of peas!) to the bridge of your nose until the bleeding stops. If the bleeding continues, notify The Christie Hotline on 0161 446 3658. Please note: If your platelet count is below 50, you should continue to take the same precautions you used during your hospital stay: For example: Only use an electric razor when shaving. Only use an electric razor to shave your legs. Use a soft bristled toothbrush. Do not use aspirin or ibuprofen without advice from the doctor. Avoid forceful blowing of the nose. Avoid taking suppositories or enemas if constipated. Contact the HTDU for an oral prescription. Avoid intra-muscular injections. Avoid activities or sports that can cause injury from colliding or straining, such as horse riding, weight lifting, skiing and contact sports. 761 Going home after an allogeneic transplant Page 18 of 31
Low haemaglobin (Hb) If you have symptoms of a low Hb, please contact The Christie Hotline immediately on 0161 446 3658. Symptoms can include:
extreme tiredness dizziness or feeling unsteady headaches nausea
761 Going home after an allogeneic transplant Page 19 of 31
Resuming your activities - exercise Recovery after treatment varies from person to person. Some people feel well quite quickly but for others, it can take many months. Please take a copy of a guide for exercising during and after treatment for cancer (booklet and DVD). The time following your transplant or treatment is one of cell growth and repair. This growth requires calories and energy, which may explain why you feel more tired than you anticipated. Remember, it is normal to suffer with fatigue and this is to be expected. You will gradually start to regain your strength and feel well again, however this may take a few months. If you are struggling to resume any of your normal activities the occupational therapist may be able to advise you about how to manage your energy levels to fulfil activities of daily living. Macmillan Cancer Support produces a booklet about fatigue management which may be helpful. There are expert patient programmes that you can attend to help you adapt to life after treatment. Please contact 0161 219 9424 for details. There is also an organisation that arranges free activity holidays for cancer patients, to help you regain your confidence and strength: www.odyssey.org.uk. In some areas you can be given free passes to attend gyms if you have had an illness. Please ask your GP if this is available in your area. However well you feel in hospital, you will probably find you tire more easily when you go home. If possible it is useful to arrange for someone to stay with you or visit regularly when you first go home. You are not likely to be able to do all your usual activities, such as housework, shopping and cooking. The nurse clinician or ward nurses can also arrange a community nurse to visit. Try to increase your level of activity gradually. At first, many people complain of aching muscles and difficulty climbing stairs. Walking is a very good exercise to start with, and can be gradually increased. More strenuous activity can be started when you are feeling stronger and your platelets have increased. We suggest that you do not go swimming for about three months after transplant. You should also not swim if you have a central venous catheter in place and it is also important to ensure that your blood counts are satisfactory. Please check with your nurse. If you are due for discharge and are having problems with mobility please ask to see the physiotherapist for advice, exercises to do at home and the availability of community physiotherapy services. If you are having problems performing general activities or need aids, for example a commode, please ask to see the occupational therapist. If you have had total body irradiation (TBI) as part of your transplant treatment regimen, you are likely to have increased tiredness and weakness 6 to 10 weeks after transplant. This is quite common and known as somnolence. It lasts, on average, between one and three weeks and can contribute to feelings of depression, slight rises in temperature, nausea and a general feeling of being unwell. Once the somnolence has passed, your recovery will continue as before. If these symptoms cause you any problems or are distressing, please inform your doctor or nurse clinician - your symptoms may be related to something else. 761 Going home after an allogeneic transplant Page 20 of 31
Personal relationships and sexuality Feeling loved, touching, hugging and kissing are often important parts of everyday life. During this difficult time, it is probably even more important to feel cared for and close to someone. When at home, there is no reason why you cannot resume a sex life and be close to your partner again. Very occasionally, you may be advised against intercourse for a short period, if your white cell or platelet counts are reduced below a safe level. Illness, tiredness and stress can affect your personal relationships. Some couples suffer from sexual problems following treatment. There are many reasons for this, both physical and psychological, which are sympathetically understood by the medical and nursing team that looks after you. If you anticipate any problems, have any questions or are anxious about any aspect of this part of your life, please do not hesitate to discuss them with a member of staff. The treatment you have had and the body image changes you may have experienced, such as hair loss, having a central venous catheter, weight loss and skin rashes, can change the way you feel about yourself. The treatment itself can cause lethargy, anxiety and temporary loss of libido or sex drive, all causing you to feel too tired, not want intercourse or to start new relationships. Some people also complain of their skin feeling too sensitive. These are quite normal occurrences following treatment and are usually short-lived, improving as you feel stronger. Meanwhile, close contact and massage may help to maintain the intimacy of your relationship whilst also fulfilling emotional demands of affection and love that you and your partner may desire. The benefit of mutual support, reassurance and understanding from both sides of the relationship are very important in helping overcome emotional and sexual problems that may occur. Many patients and partners are afraid of close contact due to risk of infection, but this should not be a problem. However, it is advisable to use some form of barrier contraception, such as a condom, until your white cell counts are completely back to normal, while you are on chemotherapy, and for the first few months following treatment. Female patients may find that their vagina is dry due to decreased vaginal secretions: this can be overcome by the use of lubricating jelly. Some patients complain of pain on intercourse, or irritation due to re-growth of pubic hair. Changing your position for love-making may help. A women’s health clinic is available in the outpatient department and women will usually be invited to attend between 3 to 6 months following transplant for advice and guidance. During treatment when platelet counts are low, female patients will have their periods stopped by a hormone drug such as Norethisterone. When you stop taking this, you may have a heavy bleed; however often the chemotherapy given during transplant will prevent this from occurring. Male patients may notice a decrease in sexual desire. This can be due to similar fears as outlined for female patients or may be a temporary decrease in hormonal level and will normally resolve with time. If it does not appear to be resolving or you 761 Going home after an allogeneic transplant Page 21 of 31
are unable to have sex, please inform your doctor or nurse, sometimes a short treatment of medications can help. Fertility can also be affected by treatment particularly if you have had radiotherapy. Male sperm counts can drop and female ovulation can be interrupted. However, it may still be possible to conceive, so we advise you to use contraception, for example a condom, during sexual intercourse. Male patients may have been able to donate sperm before treatment commences and it is advisable to contact the Department of Reproductive Medicine at St Mary’s hospital if you require any further information. We do not advise women to have a smear test in the first year following transplant, and suggest you talk to the doctors in outpatients or the nurse clinician before arranging your smear test. We understand that this is a sensitive area, but please feel that you can talk to the doctors, ward staff, nurse clinician or bone marrow transplant co-ordinator with questions in total confidence.
Following a transplant A transplant can, unfortunately, affect your fertility more permanently. Discovering that you may become infertile can be very distressing for many people, and difficult to come to terms with. It may be helpful to express your feelings to your partner, family, a close friend, doctor; nurse, or counsellor, talking and gaining as much information as possible often helps. At present there are some new developments to treat infertility, and extensive active medical research. If you become infertile, adoption is also an option that can be looked into. Please ask your nurse clinician for more information. Using donated sperm following treatment is normally discussed at St Mary’s Hospital at the time of donation. Please note there is quite a long waiting list for using donated sperm. If it has not been discussed with you, please ask the nurse clinician for more information. It is advisable to wait at least two years following treatment before considering having children. With both males and females, although infertility is probable following a transplant, it is not definite. Fertility has occasionally been known to return after a period of time. Use of contraceptive measures, for example a condom, is therefore advised if you do not wish to conceive, and also suggested for the first few months following treatment, while your body is recovering from treatment. Some of the transplant conditioning treatments, particularly if they are TBI based, can cause a woman to become menopausal which means you could have symptoms such as hot flushes, headaches, lack of periods, sore dry skin and vagina, loss of libido and mood swings. Normally, you will be referred to an endocrinology doctor in the hospital who treats hormonal problems, about 3 to 6 761 Going home after an allogeneic transplant Page 22 of 31
months following transplant. Blood tests of your hormone levels will be taken and if necessary you will be prescribed hormone replacement therapy (HRT). This usually works extremely well to reverse any symptoms. It can be given in tablet form or as a patch. HRT can also help to prevent osteoporosis and heart problems and can, therefore, be looked on in a very positive way. Men and women can also develop GvHD of the genital area which can cause soreness or a painful rash, so please inform the doctors or nurses when you attend outpatients if you have any problems.
Holidays Once you have been at home for a while and are feeling stronger, it can be a good idea to plan a holiday. Please check with a consultant before booking any holidays abroad. If you are going abroad you will usually need to wait until at least twelve months after treatment. If you need immunisations for going abroad please check with your doctor or nurse clinician for an up to date vaccination policy. If you are a European Union Citizen, you can obtain a charge exemption certificate before you leave the UK (your GP’s receptionist can advise you about this). You should also take out standard medical insurance but always read the small print to see if you are eligible. Your nurse clinician has names of helpful insurance companies if you have any problems. If you are on medication which you need to take with you, the doctors are happy to write a letter to cover you taking drugs abroad. Use normal hygiene precautions abroad, for example only drink bottled water. The Leukaemia Care Society also offer very cheap holidays in chalets and caravans all over the UK. For more information, please ring 01392 64848.
Driving and transport Where at all possible, you should avoid using public transport at first. Please contact the ward clerk before discharge from the ward if you need transport home and if you need transport to and from your first outpatient hospital appointment. Following this first appointment you will need to make all other bookings yourself. It is often possible to have help with travelling expenses. Please talk to the nurses/benefits advisers if you are having any problems. It is usually safe to start driving again as soon as your blood counts are satisfactory and as long as you feel strong enough and can concentrate, but you should first check with your doctor. If you drive yourself to hospital, do not attempt to drive home after having treatment that could cause you to feel drowsy or unwell, for example piriton, with a platelet transfusion (please ask the outpatient staff for advice). If necessary, bring a fellow driver with you.
761 Going home after an allogeneic transplant Page 23 of 31
If you have any problems with driving and gaining car insurance please contact your nurse for guidance. The DVLA also runs an online website containing lots of useful advice. The unit staff can sometimes offer hospital parking passes if you or your relatives are visiting the hospital for long periods of time on a regular basis. Please ask the ward clerk or social worker for information about this.
Emotional reactions Treatment can put an enormous physical, emotional and financial strain on the whole family and it is often difficult to re-establish normal life straightaway. It can sometimes take months or even years. There are a few things you can do that may help. Firstly, do seek help with practical and financial problems. Secondly, try to talk about problems as and when they arise with your family and friends, hospital workers or spiritual guide. You may have all sorts of thoughts, feelings and worries. Many people can feel quite emotional following treatment, or sometimes months or years later. Initially, it may feel difficult to talk but when you feel ready, it will almost certainly be helpful. There is useful information in the Macmillan Cancer Support booklets which explain about possible feelings you may have and information on learning how to cope and facing life after treatment. (Call in at the cancer information centre or contact Macmillan Cancer Support: their freephone number is 0808 808 0000). Try to keep yourself occupied, set yourself some kind of daily routine or goals and try to also see people outside your immediate family. You might find that you have to make the first approach with friends and relatives: they may be unsure whether or not you want to see them. You might find it helpful to keep in touch with other people who have had treatment. Children can sometimes find it difficult when their parents have been in hospital and unwell. There are various booklets on caring for children when parents have cancer: please ask for these from the nurse clinician or ring Macmillan Cancer Support (see above). There are also counselling and complementary therapy services available for children, so please ask the nurse clinician for advice. Some people have complained of feeling very bored after treatment especially if they are feeling quite well and are not yet able to return to work. It may be helpful to take up a hobby. The Christie art department may be able to help you with this – telephone 0161 446 8005. If you are doing woodwork, painting or modelling, you should use non-toxic paints and glues in a well-ventilated room. It may also be useful to go to evening classes or local interest groups during your recovery. It may also feel both worthwhile and enjoyable to do voluntary work for a short period. If you are interested, contact your local social services department. The voluntary co-ordinator at The Christie on 0161 446 3056 would also be glad to discuss voluntary work opportunities with you. 761 Going home after an allogeneic transplant Page 24 of 31
The nursing and medical staff are concerned about your total well-being not just your blood results, so please tell us if you are feeling particularly low or anxious. The nurse clinician is there to help support you in any way they can weeks, months and even years following treatment. If you have any worries, or want to talk about how you are feeling, please do not hesitate to contact them. We can also refer you to local counsellors or doctors who help look after your psychological needs, please ask if you feel this would be helpful. At any point, if you feel it would be useful to talk to someone who has been through a similar situation or illness to you, please contact the nurse clinician who can arrange this for you. If you are interested in complementary therapies, for example stress management or relaxation, aromatherapy or massage, reflexology, counselling and fatigue management, please contact the nurse clinician. There are now a number of local centres that offer this support.
Hospital chaplains It can often be difficult to make sense of what is happening to you when you are ill and this can affect your spiritual beliefs. The chaplains are available to listen, in confidence, whether or not you think of yourself as a religious person. They can also contact your own religious leader on your behalf or make arrangements for someone to offer similar support. Telephone: 0161 446 3097.
Returning to school or work Returning to work depends on how quickly you recover and on the type of work that you do. It varies a great deal. Some people find that they are able to return to a sedentary job that is not too demanding after six months. If your job is mentally stressful, requires a lot of physical energy or where there is a high risk of infection, you may have to wait for 9 to 12 months or even longer before returning. It is better to delay your return until you feel fully able to cope with your work. Please ask your doctor for advice. Your GP will give you sick notes for as long as it is necessary and help you decide when to return to work. If you are at school or college, it may be possible for you to continue some of your work at home. If possible, return to school or work on a part-time basis to begin with. It is a good idea to discuss this with your employer, head teacher or tutor to work out a satisfactory way of going back gently. You might also want to discuss whether you would like your nurse to talk to your colleagues or fellow students about your illness and treatment before you return, and, if so, whether you feel comfortable about the way they propose to do this. Former patients have talked about feeling apprehensive about returning to work or school, sometimes feeling embarrassed by a change in their appearance. Others have at first had difficulty in concentrating and maintaining their attention and former pace. Most people have told us that the anticipation is more difficult than the event, and that it is surprising how soon things return to normal and how 761 Going home after an allogeneic transplant Page 25 of 31
good it is to be back. The nurse clinician and doctors are usually happy to write letters of support, for example when taking exams. Parents of children returning to school might find the Leukaemia Care booklet, “The child with leukaemia at school” useful.
Sleep Many patients say they do not sleep well the first night at home, but usually this is only very temporary and most say it is just good to be back in their own bed. Occasionally, patients and relatives have nightmares for a while following treatment; these usually settle with time. Please ask the nurse clinician or doctors for advice. These simple remedies may help:
learning relaxation techniques (please ask the nurse clinician for information) not drinking before you go to bed not going to bed until you are tired not sleeping during the day getting up and not lying tossing and turning if you wake up writing down any worries and talking about them in the morning.
If these remedies do not help, it may be necessary to have sleeping tablets for a short period. Please do not suffer in silence. You may find when you are not working you do not need as much sleep as normal.
When precautions can stop The period of highest risk of infection is the first six months after treatment. There are variations from patient to patient according to the speed of general recovery, the blood count, drug therapy and type of treatment. It is, therefore, best to ask the doctors you see in outpatients or the nurse clinician when to start relaxing precautions. It is important to try to return to your normal life as soon as possible.
Outpatient follow-up When you are discharged from hospital and when your treatment has finished, your care will continue on an outpatient basis. At first you may go straight to weekly visits or you may be required to attend the HTDU outpatients twice weekly for CMV and ciclosporin monitoring. Please ensure you have an outpatient appointment before you leave hospital. After a few weeks, the frequency of your appointments will usually be gradually reduced. After six months, your clinic visits are likely to be much more infrequent. The objectives of your outpatient or HTDU visits are to: 1. Check your general, physical and emotional well-being. 2. Check blood results and arranging blood and platelet transfusions as an outpatient if necessary.
761 Going home after an allogeneic transplant Page 26 of 31
3. Check for any complications from the transplant (such as GvHD or infections). 4. Check blood levels for possible side effects of drugs you are taking. 5. Prescribe more medication as appropriate. 6. Tell the doctors if you are having any problems, concerns or are not tolerating your medication. 7. Discuss any concerns with the outpatient nurses, doctors, nurse clinician, research nurse, bone marrow transplant co-ordinators, social worker or ward nurses and to be reassured where possible. 8. Arrange tests for further treatment or routine test following completion of treatment. For example bone marrow tests and lumbar punctures are sometimes required. 9. These visits can also be a time for your bone marrow transplant donor or family members to discuss with the staff any concerns they may have. 10. Meeting up with friends. When you have an appointment for the HTDU please go to the reception and tell the person at the desk your name, they will book you into clinic. You will then need to have your blood taken. If you have a central venous catheter or PICC line in-situ, the blood should be taken from the line and then flushed and redressed. Your line should be flushed at least weekly. The receptionist will advise you where to go to have your blood test. The visit will often take a large part of the morning or afternoon. You will have your weight taken and then be shown to a bed where a doctor will see you.
Conclusion During your recovery time at home, after finishing your treatment, you will probably feel a mixture of emotions, relief that it is all over, a little ‘flat’, and possibly apprehension and fear about the future. You may find that the tiredness you experience will make you feel low and frustrated: this can sometimes be a harder time than during your treatment. In time, the tiredness will lift and you will begin to feel better. Sometimes, visiting a complementary therapy centre may help. Please ask the complementary therapy team for your local centre. The complementary therapy team can also give you information about stress management and relaxation techniques, counselling and general support. We hope your recovery is a smooth one and wish you all the very best for the future. Remember, please feel free to contact the nurse clinician or ward staff immediately with any concerns, no matter how small they may seem.
761 Going home after an allogeneic transplant Page 27 of 31
Useful leaflets Please ask for a copy of any of these publications or call into the cancer information centre. Any of the nursing staff will be happy to obtain a copy for you, they are free of charge.
Christie publications Where to get help: services for people with cancer Eating - Help Yourself Eating well following treatment and recovery from cancer Be Active stay Active: a guide for exercising during and after treatment for cancer Your A-Z of coping with nausea and vomiting Smoking cessation services at The Christie Complementary therapy services at The Christie Macmillan cancer support publications (Tel: 0808 808 0000) The emotional effects of cancer Coping with fatigue Sexuality and cancer Cancer and complementary therapies Cancer, you and your partner Work and cancer Working while caring for someone with cancer Help with the Cost of Cancer Life after cancer treatment Travel insurance fact sheet Talking to children and teenagers when an adult has cancer Cancer Research UK publication Live a healthy lifestyle – cut your cancer risk Central Manchester University Hospitals Department of Reproductive Medicine Long term sperm storage
The Christie Patient Information Service September 2015 CHR/HTU/761/16.08.10 version 3 Review September 2018
©2015 The Christie NHS Foundation Trust. this document may be copied for use within the NHS only on the condition that The Christie NHS Foundation Trust is acknowledged as the creator.
761 Going home after an allogeneic transplant Page 28 of 31
NOTES
761 Going home after an allogeneic transplant Page 29 of 31
NOTES
761 Going home after an allogeneic transplant Page 30 of 31
