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The Leukemia/Bone Marrow Transplant Program of BC

For Patients & Familes
Coping & Support

Wisdom from Former Patients

A group of patients and their families took part in a focus group at the Leukemia/BMT Program. Here is what they think is important for you to know:

On Practical Things...

  • If at all possible, have a dental exam before you commence your treatment.
  • Attend to legal issues such as wills or powers of attorney. These are not easy discussions to have, but it is always good to be prepared. Know that you have a right to consent to or refuse care at any time during your treatment.
  • Sometimes patients experience extreme sensitivities to scents during treatment. You may wish to advise all caregivers, family, friends and visitors that your room/home needs to be a scent-free environment. This is also the policy of the hospital unit.
  • Bald is beautiful. Hair grows, and being bald is not something to be embarrassed about. Some people disagree with this. If you are one of these people, please know that there are many resources in your community to get wigs or appropriate head coverings, so that you feel as comfortable as possible during your treatment. Click here to visit the Look Good...Feel Better® website.
  • Appetite fluctuates hugely during treatment, and taste buds may also be affected.  It may not be a great idea to bring favourite foods to the hospital, as many patients are not able to enjoy them, and may not wish to eat them again even after treatment is completed.

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On Emotions & Coping...

  • A strong attitude is essential. Your emotions will be volatile. Try not to be too hard on yourself, and let yourself feel what you need to.
  • Every patient and family member is on his or her own journey, and will have a different way of coping. Some patients/family members want to know all the information up front, and some want time to assimilate information in small pieces. Some people like to talk about their feelings, and some don’t. There is no correct way to be, as long as you are being true to yourself.
  • Try to take one day at a time. Whether you are a patient or caregiver, you will have good days and bad days. You cannot anticipate the future.
  • Remember that you are not a passive recipient of care, but need to take an active role in your treatment. Ask questions! Taking care of your Hickman® Line, for example, is one way for you to have some sort of control over your care, at a time where you are in a position of significantly decreased control and power over your medical situation. Many people find leaving the hospital empowering because it allows you the possibility to exercise more control over your life.
  • There are no reasons why bad things happen to good people, but it is possible to find meaning in the experience of dealing with a serious illness. Many survivors and their families have a new affinity for life that wasn’t there prior to the illness.

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On Your Support Network...

  • Consistent and enduring support is essential, and is often more important when the patient is discharged and the recovery process begins.
  • Remember that caregivers need support, too. Caregivers must have their own support network, and realize that although they are preoccupied with their sick loved one, they still need to take care of themselves or risk burning out.
  • Meeting with a patient or caregiver who has been through a similar experience is something that many patients and their families find helpful. These visits/phone calls happen strictly on your terms, and you get to decide the topic of conversation.  Your BMT social worker is always able to help connect you to a peer mentor.

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On Friends & Visitors...

  • It is important to give thought to who you want to be in contact with during treatment. A communication/visitation plan about who can call and visit, is something many patients find helpful.  It is important for patients to set appropriate boundaries based on their individual comfort levels. 
  • You or your caregiver may not wish to respond to many phone calls and emails every day. Elect someone in your support circle to assist in being a contact person for other friends and family to call, so that you only need to update one person, not 50.

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On Treatment & Recovery...

  • The after effects of chemotherapy and transplant can be hard, and recovery after some treatments can be a very slow and difficult. Be patient with yourself, and understand that re-building an entire immune system is a long process.
  • You can’t spend your life worrying that the cancer may come back. The reality is that relapse is a possibility, but you can’t let it control your life. Once your treatment is finished, it is about regaining control of your life, not about relinquishing all control to a remote possibility, which may or may not occur at some point in the future.

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