When you leave hospital following your transplant it can take time to adjust, and many patients talk about getting back to a ‘new normal’. While recovery is relatively straightforward for some patients, it can be very difficult and demanding for others.
We have grouped out information on recovery into three simple sections: Body, Mind and Life. This is because your recovery could affect many aspects of your day to day life.
Every person’s recovery is unique and these pages are here to help and support you throughout this journey.
The Life section focuses on how you can get yourself back to a new normal after your stem cell transplant. It has information and advice on a wide range of topics that are important for your recovery, including exercise and diet. You can also learn about the financial support that is available to you and how to prepare for your return to either work or education.
Almost all stem cell transplant patients will experience side effects that make eating and drinking more difficult. It’s a perfectly normal part of recovery, but it’s important to be aware of the challenges you could face and how to cope with them.
Your needs are likely to change over time. In the beginning, your focus will be on maintaining your current weight and finding the foods that you can eat easily. During this time your body needs more energy and nutrients to help repair and create new cells.
As your recovery progresses, you can start to make your diet healthier, which will help in the long term.
We have suggested some basic tips that you will hopefully find useful. They won’t all be relevant to everyone all the time, so pick and choose the advice that you think is best for you. If you would like some more specific advice, you should talk to your clinical nurse specialist or a dietician at your hospital.
This section looks at the following:
After your stem cell transplant, it will take time for your new immune system to develop properly. This period is described as ‘neutropenic’ because your white blood cell counts will be very low. You will be at risk of picking up infections from many sources, including your food, but lots can be done to help prevent it.
Your medical team will guide you on the types of foods that should be avoided when you come home. It will generally follow a diet that reduces the chance of picking up an infection from foods such as blue cheese or undercooked meat.
It’s impossible to remove all bacteria from food but being careful with the way you clean, store, prepare and cook your food will reduce the risk of infection. The following tips are a good start to improving and maintaining food hygiene:
In general, advice about the food you eat will change at different points during your recovery and will depend on the side effects that you experience. Some of these tips might seem to go against healthy eating, but you can focus on this when your weight and energy levels are approaching where they were pre-transplant.
If you:
Your relationship with your food can be just as important as what you are eating, especially if difficulties with your diet have started to make you feel anxious or stressed. It’s perfectly normal to find it hard at times but changing the way you eat could make a huge difference to how you feel and improve your recovery.
Little and often – Nobody says you must eat three meals a day, and it can often be challenging to eat a full meal all at once. Try eating smaller portions more often, so that things are more manageable.
Cravings – Eat what you want. If you feel like you can only eat certain things, just go for it! It’s better to choose something you know you can eat, rather than struggle with something because you think you should.
High calories – Choose food with more calories in to give you more energy without having to eat lots. Try having full fat milk, cream stirred into soup or cheese on a baked potato.
Quick options – Plan meals that can be prepared quickly and easily, so if you can’t manage to eat them it doesn’t seem like a waste of time and effort. But try to not plan too far ahead – when your appetite is poor, it’s easier to take things day by day.
Avoid distraction – Eat at the table rather than in front of the TV. Concentrating on your food will help you enjoy it more and feel fuller.
Aid digestion – Stick to foods that can be eaten with little chewing, or use a sauce or gravy to make food easier to swallow. Sit upright for 10-15 minutes to help your food settle and avoid indigestion.
As your recovery progresses further, it’s still important to lead a healthy life, which includes a well-balanced diet. This will help keep you mentally and physically fitter and reduce the chance of certain health problems developing.
Many patients ask about things they can do to help prevent their illness returning, or secondary cancers developing in later life. A quick internet search will give you many suggestions about how this can be done. Some of them will be based on scientific evidence, but worryingly many are not and should be avoided.
The World Cancer Fund promotes eight key recommendations that all cancer patients should follow to help reduce the risk of complications in later life. Following these points will not guarantee that everything will be ok, but they will make you feel fitter and healthier. The organisation regularly updates these recommendations as new research becomes available.
It currently recommends to:
After a stem cell transplant, keeping active can help you both physically and emotionally. Making exercise a part of your daily routine is a great way to combat fatigue, rebuild strength and balance, as well reduce the risk of heart disease and osteoporosis (when your bones become weak and fragile).
In this section we will look at the different types of exercise you can do at all stages of your recovery – starting with your first few days in hospital. It will focus on the following topics:
If your medical team agrees, you should be able to try a few very simple exercises in your hospital bed. If your hospital has a physiotherapist, they can give you some suitable exercises and stretches. As your recovery continues, your physio will work with you to increase your physical activity and progress your exercise programme.
Focus on maintaining functional movement to begin with, like walking and moving regularly, building up gradually. You will probably find it more manageable to break down activities into small chunks with some rest in-between.
Physical activity can include exercises as part of a home or gym programme, playing organised sport or simply doing tasks around the house or garden. You don’t have to join a gym or an exercise class if you don’t want to. It’s best to build physical activity into your everyday routine. It’s often easier to stick to something you enjoy, that doesn’t need much effort or planning.
As recovery progresses a structured exercise programme should cover four key areas – aerobic, resistance, balance and flexibility:
Aerobic – Anything that increases your heart and breathing rate. You could try walking, jogging, cycling, dancing or a team sport.
Resistance – Carrying the shopping and doing housework will make your muscles stronger. You could also lift weights in the gym, but make sure you start gently and build up slowly.
Balance – Activities such as yoga or tai chi will strengthen the muscles that help you balance. Even simple activities like standing on one leg can help too.
Flexibility – Regularly stretching muscles and moving joints will make you more supple and reduce any aches and pains. Yoga, tai chi and pilates will improve your general flexibility.
Once you’ve got yourself into a routine, try to stick to it and build on your progress slowly over time. If things start to get a little boring, you can always mix things up a bit or introduce a new activity.
Although it’s good to have a long-term goal that you can strive to achieve, aiming to do something like a long distance run or swim might seem impossible now. If you start by walking to the end of your street, then into town or for an increasingly longer time, you will probably be surprised by how you can push yourself each time.
It is recommended that adults should do at least 150 minutes of moderate physical activity or 75 minutes of vigorous physical activity each week. Strengthening activities that work most of the body should also be done on two days per week. It’s also advised to reduce extended periods of sitting.
As a guide, moderate level activity includes things like brisk walking or cycling where you can still talk, but you can’t sing the words to a song, whereas vigorous exercise makes you breathe hard and fast. If you’re working at this level, you won’t be able to say more than a few words without pausing for breath.
These guidelines may not be achievable at the start of your recovery – but that’s understandable. They should be a long-term goal that you build up to gradually over time.
In general, if you are recovering well, it’s safe to do light or moderate exercise. There could be times, especially in your early recovery, when your blood counts are very low. It’s probably best to not exercise during this time, but your physiotherapist, or another member of your medical team, will be able to give you specific advice.
Exercise should also be avoided if you start to feel unwell in any way. Possible signs of illness or an infection include:
If you start to have any of these symptoms, you should discuss them with your medical team straight away.
If you’ve had to take time off work, it can lead to anxiety around money and being able to pay your bills. It’s one of the main reasons why some people return to work earlier than they really should after their transplant.
Working after a stem cell transplant may be a big milestone in your recovery. It can be an important part of making you feel ‘normal’ again and a different focus away from the medical world. Some people find going back to work stops them feeling low and boosts their confidence.
Returning to work isn’t always straightforward. You’ll be recovering physically and emotionally from major treatment. You may need to make changes to the way you work and take things gradually. Going back to work isn’t always possible or right for everyone. The good news is that there is practical support and advice that can help.
As your recovery progresses you might start to think about what going back to work will be like. This can feel exciting, but also daunting, especially if you’ve been away for a long time.
Keep in touch
Keeping in touch with your employer and work colleagues will help you feel like you’re returning to your old routine. It’s helpful to start doing this as soon as you feel ready to. You could send a monthly email, speak on the phone, or have face-to-face catch ups. Some people ask to have internal newsletters or updates about the workplace so that they can keep in touch with what’s going on. Others pop into work and meet up with colleagues and friends. It’s up to you.
Your role
It can help to think through what your role involves and what you’re able to do as you start thinking about your return. It’s possible that you won’t be able to do as many hours to start with or as many of your job’s tasks at this early point. This is completely normal. It’s important to do things at your own pace.
You might find certain mental tasks more challenging as you get back into the swing of things. Taking notes, making lists, using a diary, calendar or phone apps could help you keep track of tasks and make you feel more in control. Remember, you are likely to find being back at work physically tiring. Taking regular breaks throughout the day and going for a lunchtime walk can help stretch your legs and re-energise you.
Make a plan
It’s a good idea to sit down with your line manager and someone from HR to set out a ‘return to work’ plan. This will help make the process as smooth as possible for you. It might include talking to an occupational health specialist (either through work or your hospital) for some expert advice on what you will need. It’s important that the plans are flexible and can be adapted as you recover and get stronger. Your return to work should move at your pace and be sustainable for you in the long term.
Expectations
Your work colleagues might assume that now you can work again, you are now fully cured. If you are concerned about people’s expectations of you when you return, you could show them our information My friend is having a stem cell transplant. This will give them a better understanding of what you’ve been through and how they can help you day to day. You could also discuss your concerns about how colleagues’ expectations can be managed when talking about your return with your employer.
Your employer should consider making ‘reasonable adjustments’ to your role to support you at work. Many employers won’t have experience of supporting an employee who’s had a stem cell transplant. They may not realise that your recovery continues beyond your return and you may have ongoing medical concerns as a result.
You know yourself and your job better than anyone, so think about what would make it easier. It’s really important to update your employer on a regular basis. If your situation changes, your employer can only react if you tell them what you need.
What counts as ‘reasonable adjustments’ varies and depends on the work you do. Here are some examples of the support they may be able to offer you:
It’s illegal for your employer to discriminate against you or treat you less favourably than others because of your medical situation.
If you think you are being treated unfairly, it’s important to take appropriate action straight away. It’s possible that some problems happen due to a misunderstanding and can be resolved by talking it through with your employer. If it’s appropriate, talk to your HR department.
If the problem is more serious, you might need the help of an independent body to mediate the situation. If you are a member of an employment union, they may be able to support your case too.
If you are self-employed, your return to work could cause unique challenges and concerns. Without the potential safety net of sick pay or pension scheme, you may feel forced to return to work earlier than you should to provide an income. It may not even be possible to return because of the work you do. You may experience feelings of loss if you have to give up something that has taken time and effort to build up.
After their transplant, some patients reflect and think about doing something new, or make changes in their life. This could affect your financial and family situation, so take your time and discuss your thoughts with family and friends. You can speak to your transplant team about it too. Some things you could think about:
Note: if you don’t make an employer aware of your medical situation you won’t be able to ask for reasonable adjustments or claim discrimination later, if you need to.
Just like when you left hospital, your return to school, college or university is a big step in your recovery. This can feel exciting but also daunting, especially if you’ve been away for a long time. However, preparing for your return will really help. Although it might be tough, it’s important that you tell your teachers about your condition so that they can support your needs. At the end of the day, if you don’t tell them, it’s very difficult for them to help you.
Going back to education following your stem cell transplant does not necessarily mean you should begin full-time straight away. Your transplant team will help you decide when it’s ok to return. Your recovery is a gradual process, so ease yourself into it slowly. You may be able to do some work at home or attend part-time. Try to build up your workload slowly, so you don’t feel overwhelmed.
You might not have been able to see your close friends very often during your recovery, either because you were too far away, you chose not to or because they weren’t sure what to say. It’s also possible that your appearance has changed since you were in school or college. To make yourself feel more comfortable, you could organise to go out with your friends for a catch up before you return or, if you don’t feel up to that, invite them to your home for a chat.
Take this opportunity to tell them as much (or as little) about what you are going through as you feel comfortable with.
Before you return to your studies, it’s a good idea to get in contact with your teachers to let them know how you have been getting on. Although they will know why you had to take time off, they may not be aware of your needs during your recovery.
This is the perfect opportunity to think about what could be done to make your return easier. It’s important that they know there could be times when you have to attend medical appointments or feel too unwell to study. You may want your tutor to talk to your classmates about what has been going on, so that you don’t get overwhelmed by everyone asking you the same questions. If you prefer, you could ask your parent, guardian or friend to go along with you.
If you are about to start university or return to your studies after your transplant, then potentially living a long way from home can provide its own set of challenges. Make sure you have a good support network in place, and that the people you live with know who to contact in an emergency. You should also try to move your appointments to a local hospital and register with a GP that has access to your clinical records.
It’s a horrible thing to have to talk about, but some people might use what you have been going through to make fun of you. If this happens, talk to an adult you can trust and get help – you should not have to put up with this alone. Although it’s not an excuse, some people react this way because they are nervous and don’t understand your situation. You might want your teacher to talk to your classmates about what you have gone through before you return.
When thinking about travelling abroad, a lot will depend on where you want to go and what you want to do. A few relaxing days on the beach in Spain is a very different holiday to back-packing across Asia.
As a general guide, you will probably be safe to travel 6-12 months after your transplant. However, it will depend on how well your own recovery is going, so you should always talk through your plans with your medical team to get their advice.
You might find it easier to go on a few shorter trips or city breaks first, to see how you handle things, before booking a longer holiday.
Before you travel to any country you should consider the possible risk and the precautions you might need to take. You should also talk to your GP or medical team about your plans, so they can give you the most up to date and specific advice possible.
During your transplant, your immune system is replaced, and you will need to have a new course of vaccinations to protect against common childhood illnesses like measles. Your GP or medical team will arrange these vaccinations for you.
If you travel to certain parts of the world, there’s a higher risk of picking up illnesses that aren’t normally found in Macedonia. So, you might need extra vaccines to protect you. This is often the case when travelling to parts of Africa, South America and Asia.
Vaccinations can take a few months to start working properly so you will need to talk to your team in advance, otherwise you may have to delay your plans until it’s safe for you to travel.
Vaccines work by tricking your body into thinking it has come into contact with the real virus or bacteria that causes the illness. They make your immune system react, start producing antibodies and build up your immunity. So, if you encounter the infection again, it can’t harm you and make you ill. Vaccines are made from viruses or bacteria that have either been killed or modified to make them safe.
Any vaccine based on a virus or bacteria that is still alive can cause complications when given to people with weakened immune systems, like stem cell transplant patients. As a result, certain vaccines won’t be suitable for you, which could limit the countries you can safely travel to.
People with a diagnosis of cancer, or who experience ongoing health concerns, often find it difficult to find suitable travel insurance. You may have to pay more for your cover upfront or have a larger excess to pay if you claim. Some companies may even refuse to insure you.
It’s always best to be honest and upfront about your situation so you have the peace of mind of being covered properly – just in case something goes wrong. If you are travelling outside Macedonia and need medical care, it could cost a lot, so adequate insurance is essential.
You may decide that you would like to try something new after your transplant. Your priorities in life could have changed or you might just want an excuse to get out the house! Some people decide they want to give something back or help other people going through a similar situation.
Here are a few suggestions that you might want to try. Just remember, it’s up to you what you do – just don’t push yourself too far and overdo it.
Write a blog – Some people find it therapeutic to write about their experiences, both good and bad, and enjoy sharing them with others. However, others don’t like the idea of putting themselves on public display, so only share if you are comfortable doing it. Online blogs can be set up and maintained for free using web platforms like Blogger or Wordpress.
Find a new hobby – You might find you have some spare time on your hands during your recovery. There are plenty of things you can try such as painting, reading or other crafts. You could also meet new people and socialise through local groups or evening classes. Many of these groups have a presence on social media so have a look at what’s available locally.
Play a sport – Whether it’s restarting an old sport or trying a new one, being active will boost your recovery. It doesn’t have to be anything too competitive, but regularly socialising and exercising through something you enjoy will help improve your mental and physical wellbeing. You should be able to find something at your local sports centre or through social media.
Change career – For a variety of reasons, it might not be possible to return to the same job after your transplant. Some patients take this opportunity to think about what they would really like to do instead. It might involve applying your skills to a new situation, or taking some time to retrain for something new.
We don’t want to tell you how to live your life, but certain choices could affect your recovery and make it more challenging.
Yes. Doing the things you enjoy and socialising with friends and family are essential for your mental wellbeing. It’s important to enjoy yourself when you can, so that you start to feel like you are getting back to the life you had before your transplant.
However, your medical condition will have a bearing on what you can do, and the risk of you picking up an infection will need to be considered. You might find that you tire easily, and that you still feel tired the following day. Try to plan your social life accordingly. If there is something you would really like to do, give yourself plenty of time to recover.
Drinking alcohol is an important part of socialising for many people. Unless your medical team tells you otherwise, there’s no reason why you can’t still enjoy a drink but it’s best to be sensible and not overdo it. Hangovers are nasty at the best of times, so try to avoid them. You will probably find that you can’t drink as much as you could before your transplant and that it takes longer to recover.
Both men and women should not regularly drink more than 14 units of alcohol each week.
It’s common knowledge that smoking is bad for your health – it causes cancer and reduces your lung function – but it also alters the way your body reacts to medicine. This could mean that the immunosuppressive drugs and medications that you’re taking don’t work properly.
There are many other benefits to giving up smoking including the money you will save and preventing close family and friends from inhaling second hand smoke. We won’t tell you to stop but you might want to consider cutting back, or to stop using them completely in the short term.
Recreational drugs can stop your medication from working properly and could seriously damage your recovery. They can also have a negative effect on your state of mind, which can make it more difficult to cope with any problems you might be experiencing.
You must be honest with your medical team about what you take and how often. Nobody will judge you, but your choices could have a serious impact on your health and how your body reacts to medication. It could also increase your risk of infection.
We can only recommend that you follow the advice of your medical team or GP. The advice we give on our website and in our patient resources is based on clinical research and has been approved by medical professionals.
However, there are alternatives (spiritual healing for example) that some people feel passionate about and believe can bring benefit to their recovery. If you want to explore one of these options, you must discuss it with your team first so that they can check that it’s safe.
After a stem cell transplant, some people really want to get in touch with their donor. Others prefer not to, and that’s ok too. The rules for contacting donors are set by the country they are from and vary from country to country. So unfortunately, it might not be possible to contact your donor.
Before the transplant
You won’t know the name of your donor and you can’t have any correspondence with them before your transplant. You might be told their age and gender – and in some cases, which country they’re from – but it varies between transplant centres.
After your transplant
For the first two years after your transplant, you may be able to exchange anonymous letters or cards with your donor to say thank you or tell them how the transplant went. You don’t have to do this, and your donor doesn’t have to reply.
Your first letter
You won’t know your donor’s contact details, so your letter will need to be passed on by the team at your transplant centre. Even though Scientific foundation SPIROSKI – Marrow Donor Registry has facilitated your transplant, our donor follow-up team doesn’t have access to your personal details. However, any letters you want to post after the first one can be sent through us.
Direct contact with your donor
After two years, if you and your donor agree, you may be able to have direct contact: exchanging names, contact details and perhaps meet in person. As the patient, it’s up to you to suggest this if you want it to happen. It usually follows a period of anonymous contact.
Direct contact must be two years after your last transplant or donor lymphocyte infusion (DLI) and you should be in good health. Your transplant centre will need to confirm that they are happy for this to go ahead so speak to your team when you are ready. We can speak to them for you if you prefer.
If you’re under 18, a parent or legal guardian can contact your donor on your behalf.
Contact with international donors
Your donor’s home nation will have its own rules about contact between the two of you.
Where contact is allowed, there will always be a period where you and your donor may only communicate anonymously. No names, personal details, photos or gifts can be shared.
After a period of anonymous contact, some countries allow patients and donors to have direct contact. Our rules allow direct contact after two years, although some overseas registries may not allow contact until five years post-donation.
You will need to be in good health and not expecting to need any further donations (including donor lymphocyte infusions) from your donor. Both you and your donor need to agree to direct contact.
The following international registries don’t allow any direct contact between patients and donors:
Writing to your donor
Alongside your letter or card for your donor, please prepare a separate covering message stating that you would like your letter to be sent to your donor, including your name, date of birth, transplant date, and transplant centre and then either take a photo or scan the letter so it can be emailed as an attachment.
Your first letter must be sent via your transplant centre but any correspondence after then can be sent directly to us.
Please also let your transplant team know that you have sent a message when you are next in contact with them.
It can be hard to think about what you want to say to your donor. For many people it’s as simple as wanting to say thank you. If you’re lost for words, you could tell them about the difference that it’s made to your life, including your feelings about the transplant. You could also let them know about any significant milestones that you’ve reached after your transplant.
There are some informations that you can’t include in the letters. If this information is included, we will have to take it out.
Please don’t include:
Please don’t share your letters on social media or with the press unless you have signed a consent form with our press team.
Waiting to hear back
There can be delays in processing your letters, so you might not hear back straight away. It’s not always possible to get in touch with your donor, sadly. We know this can be disappointing, but there could be lots of different reasons for this. Sometimes we might have more information about why, so you can get in touch with us to find out more.
Generally, donors are usually happy to hear from you, even if it’s just to say thank you. So, don’t be worried if you’ve had some post-transplant setbacks. Donors receive information at the time of donation that prepares them for the complications of a transplant.
On the other hand, you might not hear back from your donor; they may feel grateful to receive a thank you but may not know what to say or wish to continue contact. All donors are different.
Although you now share the same blood stem cells as your donor, this could be where the similarities end. Some donors and recipients strike up fantastic friendships – others find that they don’t have anything else in common. Either way, you shouldn’t feel any obligation.
Scientific Foundation SPIROSKI is founded on 03.02.2002 year.
Registered in Central Registry for Foundations with UBIN: 5889243 and VAT: 4030004519877
Registered address: st. Rajko Zhinzifov br. 48, 1000 Skopje, Republic of Macedonia
