Getting Started:
As someone affected by hematological (blood) cancer (e.g. leukemia, lymphoma, myeloma), you are not alone. There are people who can talk to you and answer your questions. Information is available on-line, by phone and through the mail. Listed in this section are just some ways of starting your search for further information about hematological cancers or stem cell/bone marrow transplants.
One-On-One:
To talk to someone in a similar situation:
The Canadian Cancer Society Peer Support Services will put you in touch with a volunteer who has faced a similar situation to your own. This service is free and is provided through the telephone. Call toll-free 1-800-263-6750 for further information about this service.
The Leukemia and Lymphoma Society of Canada (Prairies Region Chapter) has the FIRST CONNECTION PROGRAM which connects patients and their families or caregivers at any stage of diagnosis and recovery with individuals who have personally experienced the challenges of dealing with a diagnosis of Leukemia, Hodgkin Lymphoma, Non-Hodgkin Lymphoma, Myeloma or Myelodysplastic Syndrome.
The BMT InfoNet has CARING CONNECTIONS PROGRAM which can put you in touch with someone who has been through transplant either as a patient, caregiver or other family member and has volunteered to provide one-on-one support to others going through the process. For more information contact Cindy Kessler at BMT InfoNet or call toll-free at: 1-888-597-7674.
To talk to a knowledgeable health care professional:To obtain general information:
The Canadian Cancer Society has an Information Service, staffed by health care professionals who can provide you with written material in answer to specific questions. Whether you are at the start of your quest for information and are not sure what you need to know or if you are wanting specific resources but are having trouble finding the information, this is the service for you. They have information on all types of cancer and services. While they can answer questions by e-mail, they can give you faster, more detailed and personalized information by telephone. Call them toll-free at 1-800-263-6750, Monday to Friday from 9 a.m. to 6 p.m. Note: They do not provide medical advice, the names of doctors or comment on the quality of a service, treatment, product or therapy.
To obtain information specific to blood cancers:
1. The Lymphoma Foundation of Canada provides education for lymphoma patients, their families and their support systems through patient education sessions and Lymphoma Patient Resource materials.
2. The Myeloma Canada organization has a support group in Saskatchewan and can provide information relating to multiple myeloma. Their website provides information about how to contact someone in Saskatchewan.
3. The Canadian Partnership Against Cancer has a web portal which gives access to many sources of information relating to cancer.
Websites:
Care must be taken when searching the web for useful resources. Consider the following four basic criteria in your search:
Content: Is the information accurate, up to date, and appropriate for your needs?
Credibility: Who developed the information? When was it last updated? Is there contact information?
Usability: Is it easy to read and understand and appropriate to your needs?
Privacy: Are privacy guidelines stated on the web page and are you assured of confidentiality if you seek further information through E-mail?Web pages that could provide a start for your search of the internet include:
Stem Cell Transplant information:
Blood & Marrow Transplant Information Network
This is an organization based in the USA that has many resources for those undergoing a stem cell transplant. It also provides a newsletter and organizes an annual conference. Of particular interest are their webcasts. A simple click of the mouse connects you to national experts who give presentations on a variety of topics.OneMatch Stem Cell and Marrow Network
This organization is a Canadian Blood Services program and is the registry for all Canadian donors of stem cells or bone marrow. This website provides all the information needed on how to register to be a donor.Blood Cancer Information:
The following organisations’s websites provide information and support relating to specific types of blood cancer or to general information about cancer:
The Leukemia and Lymphoma Society of Canada
The Myeloma Canada Organization
The Lymphoma Foundation of Canada
The Saskatchewan Cancer Agency
Books:
STEM is always interested to hear from its members as to books that they have found interesting on the topic of blood cancers and/or stem cell transplants. The following are some of the titles of books that have been sent to STEM:
Title
Author
Year & Publisher
Description
Climb back from Cancer
Cecilia Hobson and Alan Hobson
The story of one man’s experience of a stem cell transplant carried out in Calgary
Across the Chasm: A caregiver’s story
Naomi and Brian Zikmund-Fisher
The diary of the experiences of the caregiver of a stem cell transplant survivor.
Bone Marrow and Blood Stem Cell Transplants: A guide for Patients
Susan K. Stewart
A concise reference book for those wanting to know more about the process
The Stem Cell Transplant Coloring Book
Written for children going through a transplant but could be used for children who have a parent receiving a transplant
Stevie’s New Blood
Kathryn Ulberg Lilleby
Oncology Nursing Press, Inc
Story about a boy having a stem cell transplant giving the child’s perspective
Note: Send us an E-mail with any recommendations for books that might be of interest to STEM members or write to us at:
c/o STEM, 359 Pezer Cove, Saskatoon, SK. S7S 1J9