Post-Transplant Information

Patients have described going through a transplant to be an “emotional roller coaster” that includes ups and downs (some better days and some difficult days).  You may feel different emotions after the transplant, and they can change day to day. You may feel emotions like hope, fear, anger, sadness, stress or worry and loneliness.

Each person has their own strengths and different skills that they use to cope with difficult emotions. Below are some tips that can help you:  

• Let feelings out. Share your feelings with those you feel close to, such as your family and friends or your health care team member. It can help to share your feelings with someone and to know that you are being listened to. If you need more support, a social worker can help.  
• Get information. Ask the staff questions, so you will know what to expect. This will help you feel more involved and in control of your care.   

Don’t be embarrassed to ask your doctor to repeat something or to translate it into words that you can understand. Sometimes, asking one of the nurses to explain what the doctor means will help you better understand the message. 

• It helps to write down any questions you have before meeting with your doctor.
• Consider bringing a family member or friend with you to each of your appointments who can help you recall important details.
• Ask to record or videotape discussions with the transplant team to help you later recall answers to questions.
• Use relaxation exercises. Practice relaxation exercises such as meditation or deep breathing. These exercises can be really helpful in reducing feelings of stress.  
• Do activities you enjoy. Distract yourself by focusing on or doing an activity.  This may give you some relief from your thoughts and feelings. You will need to have a variety of options because your focus and concentration may be limited to short periods. This may include things like:   
  • Reading  
  • Listening to music  
  • Watching TV or favourite movie
  • Painting, sketching, knitting  
  • Playing a game
  • Doing a puzzle  
  • Spending time with family and friends  
• Keep physically active. This is a great way to reduce stress. Being active can improve your mood and keep you healthy.   
  • Take short walks for 10 to 15 minutes if you feel alone, bored or restless.  
  • Check with your health care team about your level of physical activity. You may also need to do certain things to stay safe.  
• Make sleep a priority. Make sure you are getting enough sleep and that you are sleeping well. If you have trouble sleeping, speak to your doctor or nurse.  
• Set realistic small goals. Take it one day at a time. This helps focus you on the here and now and see your progress one step at a time.    

Your family is also affected by the transplant treatment, and you may be worried about your family’s well-being. It may be hard to cope with all the feelings when you are tired from your treatment. Some of your family’s feelings and worries may be like yours, but they can also have different reactions and concerns.  

• Family members may have to take on more responsibilities and may be unsure about how to cope with your illness.  
• Stresses related to work, money childcare, eldercare or other issues can become a problem.  
• For those from out of town, there can be the added stress of being away from family surroundings and the support of friends, neighbours and family.  
• Children may also have their own worries. You may even see some changes in your children’s behaviours.   

It is important for you and your family to share your feelings and any concerns with your health care team so they can offer you support and assistance. Here are some suggestions that you and your family may find helpful:   

• Prepare and talk to your children. Prepare your children by talking with them and giving them information suited to their age and level of understanding.  
• Seek support. Ask family and friends for extra help with tasks such as car rides, meals, childcare and daily routines.  
• Caregiver support. Encourage family members to take care of themselves by getting enough sleep, eating well, exercising and finding time alone. Encourage them to ask for help and seek support from others including family, friends or a professional counsellor. The social worker can help you with this. 

Please note that family members are encouraged to find accommodations if they are from out of town as we are unable to accommodate family members to stay with the patient while in hospital.  

Tell family members and friends how they can best help you. They want to be there to love and support you but need to know what is most helpful.   

Returning to work is a common source of stress for people after their transplant. Many people think that others have no problem with it, but it is a big adjustment for everyone. When you feel ready to return to work, it is best to do it slowly and over time.  

Talk to your doctor. It is important to talk to your doctor about your return-to-work plans so you get medical support and guidance. Your doctor can give you advice on when you can consider returning to work. They can also give you and/or your workplace tips on what needs to be considered given your physical needs  

Be patient with yourself. It is important to pay attention to your body. Each person is different and each person’s return to work plan will look different.

Forcing yourself to move ahead before you are ready may result in needing to take even more time off from work.  

Make a plan before you return to work. Consider if you want to share information about your illness with your coworkers. How much and how you share this information is up to you. You have a right to keep your personal situation private.  

Wellspring offers a program led by professionals who assist people with this issue.  

Many transplant patients are concerned about their cancer coming back or not being controlled.

This is a very common fear. The risk of recurrence is different for each person. It depends on many factors, such as your type of cancer, the treatment you had, and how long it has been since your treatment.  Speak with your doctor if you find yourself worrying about the risk your cancer will return. Here are some actions you can take to support your well-being after your transplant is finished:  

• Keep a record of your appointments. Go to all your medical follow-up appointments, even if the hospital brings back unpleasant memories. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes and important decisions.  
• Be informed. Learn about your cancer. Know what symptoms of recurrence to look out for. Talk to your doctor and ask any questions you may have about your cancer experience. Having more knowledge may give you a greater sense of control over your life.  
• Share your feelings. People often find that when they share strong feelings like fear, anger or sadness, they are better able to let go of them. Some people talk to friends or family, other cancer survivors or a counsellor. Wellspring offers support for those affected by cancer including programs that can help connect you with other cancer survivors.Even if you prefer not to talk with others, you can still sort out your feelings by thinking about them or writing them down. If you are having a hard time, talk to your doctor, nurse or social worker.              
• Focus on wellness. Try to be hopeful. Try to use your energy to focus on wellness and what you can do now to stay as healthy as possible. Eat healthy and avoid alcohol and other sedatives (unhealthy things you may feel dependent on).   

Some side effects of a stem cell transplant are not evident until several months, or even years after treatment. Some early complications can persist long-term.

Common late complications and those that begin shortly after transplant and can persist long-term include:

• chronic graft-versus-host disease (allogeneic)
• cognitive challenges (learning, memory and attention problems)
• chronic fatigue
• insomnia
• sexual difficulties
• infertility
• cataracts 

Less frequently, patients experience

• secondary cancers
• breathing problems
• neuropathy (nerve damage)
• dental problems
• muscular or skeletal problems
• osteoporosis
• heart problems 

Your risk for developing problems after transplant will depend on your disease, type of transplant you had, your age and your previous treatment history. Many complications can be managed or minimized with proper screening, preventive measures and lifestyle changes.

You will continue to be a patient of the LHSC transplant team indefinitely to help identify, monitor for and help with managing any long-term complications.  

Chemotherapy and certain other medications increase skin sensitivity to the sun. Having a transplant also increases your risk of other cancers, especially skin cancer. Avoid the sun and wear a hat until your hair grows back.  Wear protective clothing and a sunscreen with a minimum of SPF30.  

Many people who are living with cancer, and/or getting treatment for cancer, will not be able to work for some amount of time.  

In these cases, the amount of time that you will not be able to work will depend on your health, and the work that you do. Speak to a social worker at the Verspeeten Family Cancer Centre or a member of your health care team to know what to expect and how to prepare for this. You may reach a Social Worker through the Supportive Care Office at extension 58608.  

There are some programs that may be able to give you financial help.  

If you would like help learning more about these services, ask your doctor or nurse to make a referral to an oncology Social Worker on your behalf.  

A Social Worker can help you find out:  

• If there are any financial support programs that can assist you  
• How these programs work  
• How you can apply for them  

The patient assistance fund provides some limited assistance with costs associated with your cancer treatment. Applications are available in the Keith Samitt Patient and Family Resource Centre on the main level of the Verspeeten and can be submitted by placing them in the patient assistance fund mailbox also located in the library.  

You or your family may qualify for financial assistance from one or more of the programs below:  

• Work Related Benefits  
• Employment Insurance (EI) Sickness Benefits  
• Canada Pension Plan (CPP) Disability Benefits  
• Ontario Works (OW)  
• Ontario Disability Support Program (ODSP)  
• EI Caregiver Benefits  

More information is available in the My Care Guide or the Patient Information Zone.  

You can also contact social work yourself or ask your health care team for a referral to Verspeeten Social Work.  

For further information or questions please contact the BMT Clerk at 519-685-8500 extension 57955. 

There are other cancer resources to help patients and families. Many of these agencies have online resources you can access.  

Some examples include:  

• Peer Support Program – South West Regional Cancer Program
• Canadian Cancer Society  
• Wellspring  
• Young Adult Cancer Canada  
• Leukemia & Lymphoma Society of Canada
• Pink Pearl Canada – Support for self-identifying young women.
• Your local Home and Community Care support service