Download Ontario Blood Cancer Resource Guide

Ontario Blood Cancer
Resource Guide
The Leukemia and Lymphoma Society of Canada
Ontario Region
1502-480 University Ave, Toronto, ON M5G 1V2
416.585.2873 ext. 1856
Toll Free 1.866.585.2873
Contact us to receive updated information
Updated January 2013
The mission of The Leukemia & Lymphoma Society of Canada is to cure
leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of
life of patients and their families.
This resource guide has been developed to make it easier for those affected by blood
cancers (patients, survivors, families or caregivers) to access a complex healthcare and
social service system and find the services to match your individual situation and style. This
guide is a “work in progress,” not a complete list, and your comments and suggestions are
welcome.
Knowing what you need and expressing those needs are the first steps in finding
information and support. A cancer diagnosis can bring a sense of vulnerability and some
people feel uncomfortable asking for assistance. However, you are not alone in this
experience so please let others know what you need! This includes family members, as
most organizations provide services for patients and their immediate family.
If during your search for services you cannot find what you need, please inform staff about
the need anyway. Identifying needs is the way to raise awareness and create change. Even
if a particular organization does not offer a service, staff may be able to connect you with
others who are working toward the same goals.
Please be an informed consumer and evaluate these services according to your own
situation. The summaries of these resources are based on current information and may
require updates or changes. Your feedback is important to help make this a useful guide for
people affected by blood cancers in the Ontario Region.
With sincere best wishes,
Lucy Di Carlo
Lucy Di Carlo
Community Outreach Manager
The Leukemia and Lymphoma Society of Canada, Ontario Region
1502-480 University Ave, Toronto, ON M5G 1V2
416.585.2873 extension 2438
Toll Free 1.866.585.2873
[email protected]
email me if you would like to receive an electronic copy of this guide, which will allow easy
access to all the hyperlinks in this document.
Section 1: The Leukemia and Lymphoma Society of Canada (LLSC)
Education ……..................................................................................................................................... 2
First Connection Program ……............................................................................................................ 2
On-Line Support …...............................................................................................................................2
Family Support Groups…………….......................................................................................................2
TrialCheck®. ……………......................................................................................................................2
Disease Information Booklets ……………............................................................................................3
Treatment Booklets ..............................................................................................................................6
Fact Sheets ..........................................................................................................................................7
Section 2: National Resources
The Canadian Cancer Society..............................................................................................................9
Canadian Blood Services/One Match...................................................................................................9
MedEffects Canada..............................................................................................................................9
Canadian Health Network.....................................................................................................................9
Public Health Agency of Canada..........................................................................................................9
Helpful Tips for Newly Diagnosed Patients...........................................................................................9
Blood Cancer Specific Organizations.................................................................................................10
Understanding Emotional Issues of Cancer.......................................................................................10
Clinical Trials Information....................................................................................................................11
Other Cancer Resources – Canada....................................................................................................11
Online Resources...............................................................................................................................11
Explaining Cancer to Children............................................................................................................12
Cancer Survivorship Information.........................................................................................................12
National Financial Information and Resources...................................................................................12
Section 3 Ontario Specific Resources
Cancer Care Ontario...........................................................................................................................13
The Ontario Ministry of Health and Long-Term Care..........................................................................13
Community Information Toronto.........................................................................................................13
Coping with Cancer and its Treatments:
PMH: The Healing Journey.................................................................................................................13
Relaxation Training.............................................................................................................................13
Group Relaxation Training..................................................................................................................13
ELLICSR: Surviving and Thriving.......................................................................................................13
Wellspring...........................................................................................................................................13
Canadian Cancer Society...................................................................................................................14
Gilda’s Club.........................................................................................................................................14
Dorothy C. Madgett.............................................................................................................................14
Toronto and District Myeloma Support Group – Thornhill...................................................................14
Well Wood – Hamilton........................................................................................................................14
Hearth Place- Oshawa........................................................................................................................14
Childcan .............................................................................................................................................14
HopeSpring – Waterloo.......................................................................................................................14
Leukemia Association Ottawa Support Group....................................................................................15
Ontario Specific Financial Resources:
Ontario Work and Ontario Disability Support Program.......................................................................15
Trillium Drug Plan...............................................................................................................................15
Cancer Drug Assistance Program......................................................................................................15
Ontario Government Funded Drug Plan.............................................................................................15
Northern Ontario Families of Children with Cancer............................................................................15
Hair Loss............................................................................................................................................15
Transportation……………………………………………………………………………………………….15
Accommodations..............................................................................................................................16
Outdoor Adventures ........................................................................................................................16
Section 1: The Leukemia & Lymphoma Society of
Canada (LLSC)
Patient Services Programs include:
 Comprehensive Printed Materials regarding the various blood cancers, their treatments and related
topics; see next pages for partial listing. Additional materials are available including topics regarding
children with cancer.
 In-person Education Programs for patients/family members and for healthcare professionals.
Telephone Education Sessions (upcoming schedules and archives on website)
 First Connection Program. connects patients, their families or caregivers at any stage of diagnosis
and recovery with volunteers who have personally experienced the challenges of living with a diagnosis
of Leukemia, Lymphoma, Myeloma or Myelodysplastic Syndrome. Patients and/or their caregivers are
matched with volunteers by diagnosis, age and gender when possible. Connections occur via the
telephone, email, or in-person.
 Family Support Groups. links blood cancer patients and their families to a group where they share
information, support, education and feelings in a comfortable and caring environment.
 All of our Family Support Groups are facilitated by credentialed health/mental health professionals who
have oncology and group work experience.
 Current Family Support Groups: Please contact [email protected] for more information.
th
o CML Support Group – runs every 2 months, next session September 24 , 2011.
st
o MDS Support Group – runs every three months, next session October 1 , 2011.
o Current Online Support Groups: Living with NHL Chat, Living with CML Chat, YACconnect
Straight Talk for Young Adults Facing Blood Cancer
http://www.lls.org/#/diseaseinformation/getinformationsupport/onlinechats/On-Line
 Advocacy and partnership with other groups and organizations who are working toward improved
cancer care.
 Information Resource Centre (IRC) 1-800-955-4572 provides the public, health professionals and
patients (and their families) living with blood cancers accurate, up-to-date, disease-related information.
Available Monday through Friday, 9 a.m. to 6 p.m. EST. Website www.llscanada.org provides disease
information and support via connecting through the web, through email and discussion boards/forums
on-line. IRC staff have access to a translator service in over 140 languages.
 TrialCheck®. An online service for finding clinical trial information for blood cancer.
https://www.trialcheck.org/cancertrialshelp/membership.aspx?memid=4255
All patient services are provided free of charge through the generosity of individual and corporate
donations. Two of our key campaigns, Light the Night www.lightthenight.ca and Team In Training
www.teamintraining.ca also offer opportunities for people affected by blood cancers to get together,
participate and create a supportive community in Ontario.
Here are two ways to keep up-to-date with regional and international information and events:
 Local: To receive newsletters about Ontario events, ontact our regional office at
[email protected] 416 585 2873 ext. 2438 or toll free 1.866.585.2873
 International: Electronic newsletters with disease and treatment updates are accessed at
www.lls.org/#/aboutlls/news/subscribe/enewsletter/
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DISEASE INFORMATION BOOKLETS
Understanding Leukemia
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/understandingleukemia.pdf
Acute Lymphoblastic Leukemia (ALL)
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/all.pdf
Acute Lymphoblastic Leukemia: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/allguide.pdf
Chronic Myelogenous Leukemia (CML)
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cml.pdf
Chronic Myelogenous Leukemia: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cmlguide.pdf
Acute Myeloid Leukemia (AML)
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/aml.pdf
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Acute Myeloid Leukemia: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/amlguide.pdf
Chronic Lymphocytic Leukemia (CLL)
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf
Chronic Lymphocytic Leukemia: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cllguide.pdf
Myelodysplastic Syndromes
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mds/pdf/mds.pdf
Myeloma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/myeloma/pdf/myeloma.pdf
Myeloma: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/myeloma/pdf/myelomaguide.pdf
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Hodgkin Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/hodgkinlymphoma.pdf
Lymphoma: A Guide for Patients and Families
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/lymphomaguide.pdf
Non-Hodgkin Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/nhl.pdf
TREATMENT BOOKLETS
Blood and Marrow Stem Cell Transplantation
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/bloodmarrowstemcell
transplantation.pdf
Blood Transfusion
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/bloodtransfusion.pdf
Support Booklet: Each New Day
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/eachnewday.pdf
Understanding Clinical Trials for Blood Cancer
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/painmanagement
.pdf
Understanding Drug Therapy and Managing Side Effects
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/understa
ndingdrugtherapy.pdf
Understanding Lab and Imaging Tests
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/understandinglab
imagingtests.pdf
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FACT SHEETS
Angiogenesis
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/angio
genesis.pdf
Cancer-Related Fatigue Facts
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/canc
errelatedfatiguefacts.pdf
Chronic Myelomonocytic Leukemia (CMML) and (JMML)
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cmmljmml.
pdf
Choosing a Blood Cancer Specialist or Treatment Centre
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/choo
singaspecialistorcenter.pdf
Coping with Childhood Leukemia and Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/childhoodbloodcancer/p
df/childhoodleukemialymphoma.pdf
Cord Blood Stem Cell Transplantation
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/cordbloo
dstemcelltransplantation.pdf
Cutaneous T Cell Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cmmljmml.
pdf
Essential or Primary Thrombocythemia
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mpd/pdf/essentialprimar
ythrombocythemia.pdf
Fertility
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/fertilit
y.pdf
Food & Nutrition
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/foodn
utritionfacts.pdf
Hairy Cell Leukemia
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cmmljmml.
pdf
Idiopathic Myelofibrosis
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mpd/pdf/idiopathicmyelo
fibrosis.pdf
Immunotherapy
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/immunot
herapyfacts.pdf
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Integrative Medicine & Complementary and Alternative Therapies
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/integrativ
emedicinecamtherapies.pdf
Knowing all your Treatment Options
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/knowinga
llyourtreatmentoptions.pdf
Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/childhoodbloodcancer/p
df/longtermlateeffectschildhood.pdf
Long-Term and Late Effects of Treatment in Adults
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/treatments/pdf/longterml
ateeffectsadults.pdf
Mantle Cell Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mpd/pdf/idiopathicmyelo
fibrosis.pdf
Pain Management
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/pain
management.pdf
Peripheral T-Cell Lymphoma
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/periphera
ltcelllymphomafacts.pdf
Polycythemia Vera
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/mpd/pdf/polycythemiave
ra.pdf
Sexuality & Intimacy
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/generalcancer/pdf/sexu
alityintimacy.pdf
Waldenstrom Macroglobulinemia
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/waldenstr
ommacroglobulinemia.pdf
(Additional materials and pediatric topics are available)
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Section 2: National Resources
The Canadian Cancer Society (CCS)
http://www.cancer.ca/Ontario.aspx?sc_lang=en
The Canadian Cancer Society addresses all types of cancer and has offices throughout Canada, with
regional offices across Ontario. Staff and volunteers offer a wide range of services including:
CancerConnection – a peer support program, volunteer drivers for medical appointments, emergency
financial aid, lodge accommodations and a wig program.
Prevention, screening, public awareness, advocacy and funding research are other key activities of the
CCS. The Canadian Cancer Encyclopedia located on the CCS website is a source of information and
statistics regarding cancer incidence and care in Canada. Cancer Information Specialists are available to
answer questions and direct you to services in the community.
Canadian Blood Services and One Match
www.bloodservices.ca and www.onematch.ca 1.888.236.6283
Please encourage friends, family and associates to donate blood at Canadian Blood Services, and
register on One Match, the stem cell registry, if eligible.
MedEffect Canada
http://www.hc-sc.gc.ca/dhp-mps/medeff/index-eng.php 1-866-234-2345
This Health Canada website is designed to give Canadians access to information regarding safety of drug
products and health supplements. Health Canada wants to ensure that they have all data regarding
adverse reactions to medications. Please be aware that you can report any adverse reactions to
medications to the phone number listed above. Advisories and recalls are also listed on this website.
Public Health Agency of Canada
http://www.phac-aspc.gc.ca/
Another federal government website with health information and updates. Search for topics of interest.
You can also sign up for monthly electronic newsletters.
Helpful Tips for Newly Diagnosed
Newly Diagnose: First Steps
http://www.lls.org/#/diseaseinformation/managingyourcancer/newlydiagnosed/
Getting Quality Patient Care: What you can do, what you should know
http://www.partnershipagainstcancer.ca/wp-content/uploads/2.4.0.1.4.2-Quality_care_English.pdf
A Survivor’s Compass
http://www.cancerconsultants.com/a-survivor%e2%80%99s-compass/
Sample questions to ask at medical appointments
http://www.cancersurvivors.org/Resources/questions.htm
Blood Cancer Specific Organizations
The Aplastic Anemia & Myelodysplasia Association of Canada
(Also paroxysmal nocturnal hemoglobinuria, PNH)
http://www.aamac.ca/ or [email protected] or 1-888-840-0039
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CLL
http://clltopics.org
CML Society
http://www.cmlsociety.org/ or 1-866-912-7575
International Waldenstrom’s Macroglobulinemia Foundation
http://www.iwmf.com
Lymphoma Foundation Canada
http://www.lymphoma.ca/ or 1-866-659-5556
Myeloma Canada
http://www.myelomacanada.ca/default.aspx
Myeloproliferative Disorders
http://www.mpdinfo.org/index.html
National Bone Marrow Transplant Link
http://www.nbmtlink.org/resources_support/resources.htm
This link is dedicated to helping individuals and their families from diagnosis through survivorship
Canadian Partnership Against Cancer
http://www.partnershipagainstcancer.ca/
1-416-915-9222
This website is the place to start if you want to know what is happening in cancer care in Canada. It
includes reports, details of projects, conferences and links to partners across Canada.
Canadian Cancer Action Network
www.canceraction.ca
1-866-378-1986
Canadian Association of Provincial Cancer Agencies
http://www.capca.ca/
Canadian Blood and Marrow Transplant Group
http://www.cbmtg.org/home/
Understanding Emotional Issues of Cancer
The Emotional Facts of Life with Cancer
http://www.capo.ca/patient-family-resources/how-do-i-get-more-information/
1-416-968-0207
The Emotional Facts of Life with Cancer booklet was produced by the Canadian Association of
Psychosocial Oncology. Read this booklet online or phone for a printed booklet. The goal of the booklet is
to inform people of some of the issues related to cancer diagnosis and the type of counselling and
support services that can be accessed.
Clinical Trials Information
TrialCheck®
http://www.trialcheck.org/cancertrialshelp/membership.aspx?memid=4255
The Leukemia & Lymphoma Society Information Resource Centre 1.800.955.4572
The above methods are three ways to get some preliminary information about whether there are clinical
trials available for your situation. Please speak with your physician for additional information and the
suitability of the trials for your unique situation.
9
ClinicalTrails.gov
http://clinicaltrails.gov/
ClinialTrials.gov is a registry of federally and privately supported clinical trials conducted in the United
States and around the world. This website will give you information about a trial’s purpose, who may
participate, locations, and phone numbers for more details.
Canadian Cancer Trials
http://www.canadiancancertrials.ca/
Canadian Cancer Trials is another great registry to check out what trials are taking place in Canada that
you might be eligible to participate in.
Other Cancer Resources – Canada
CancerChatCanada Online Support Groups for patients or caregivers are available. Phone
1.800.663.3333 ext 4966 to find a group suited for you.
Cancer View Canada
www.cancerview.ca
A service for linking Canadians to cancer information and services.
Living Well with Cancer
www.livingwellwithcancer.com/
Empower the Patient
www.empowerthepatient.com/
Princess Margaret Hospital
http://caringvoices.ca/en/
Online Resources
Lotsa Helping Hands
http://www.lotsahelpinghands.com/
This is a volunteer coordination website suitable for families who are busy, under stress, and in need of a
simple method to inform their friends/family how they could help with some of their daily routines of
cooking, laundry, appointment driving, childcare, etc. One person who acts a “volunteer coordinator” puts
the information into the website so others who want to know “how they can help” can log in and sign up
for tasks. Reminders are sent to people who have signed up for an activity. It is a quick, efficient way to
receive the help you need without a lot of phone call coordination.
CareZone
www.carezone.com
CareZone provides a safe, private place to organize, store and manage everything. Organize yourself, or
grant access to your family and helpers. Only you make the decisions.
CarePages
http://www.carepages.com/lls
This online service provides templates for posting photos and text updates. It is great way to provide
updated information and stay connected to people, when and how you want, especially if you are
undergoing treatment. This service may help you to share your story with those of your choosing by
sharing your access code to your own personal site.
ACOR – Association of Cancer Online Resources
http://www.acor.org/
Cancer information and disease specific chat rooms to ask questions or connect with others. Archived
information and suggestions for dealing with many aspects of cancer care; for example, tips for reducing
a side effect, swallowing medications, etc.
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Explaining Cancer to Children
My Anything But Ordinary Cancer Journey
http://www.cancerinmyfamily.ca/#/landing-page
An interactive website for children to explore and address questions and feelings related to
having a parent or other family member diagnosed with cancer.
Kids Konnected
http://www.kidskonnected.org/
This website offers a list of information and tips for children who have experienced a cancer diagnosis of
a parent.
Welcome Back Program
The Leukemia and Lymphoma Society of Canada 416.585.2873 x 2438
Resources and support to increase communication among healthcare professionals, parents, children
with cancer and school personnel so that the child has a smoother transition back to school.
Cure4Kids
Cure4Kids is a comprehensive educational program dedicated to supporting the care of children with
cancer and other catastrophic diseases by providing high-quality educational materials and online
collaboration tools.
http://www.cure4kids.org/kids/elem/
Cancer Survivorship Information
Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus
Daniel Silverman and Idelle Davidson
http://www.amazon.com/Your-Brain-after-Chemo-Practical/dp/0738212598
Cancervive
http://www.cancervive.org/
An organization dedicated to the experience of people following cancer treatment. Online resources,
books, and DVDs to learn how others have found meaning and purpose in the “new normal” of life after
cancer.
Livestrong- Lance Armstrong Foundation
http://www.livestrong.org/
An organization dedicated to enhance strength, power and attitudes of people affected by cancer. A lot of
printed information and resources on the topic of life after cancer.
National Financial Information and Resources
Employment Insurance (EI) Sick Benefits - EI offers up to 15 weeks payment for people who are
eligible. This is based on how many weeks have been paid into the plan, and payments are based on
weekly earnings. Apply on-line through Service Canada. Drug costs are not covered.
Canada Pension (CPP) Disability - People with severe and prolonged illness can apply to this plan, if
they made regular contributions to CPP. Apply on-line through Service Canada or call 1-800-277-9914.
Drug Manufacturer Assistance Programs for New and Expensive Drugs - Drug companies may help
you find other drug payment options. They may also provide financial assistance.
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SECTION 3: Ontario Specific Resources & Information
Cancer Care Ontario
http://www.cancercare.on.ca/
Cancer Care Ontario is the provincial agency responsible for continually improving cancer services. As
the government’s cancer advisor, Cancer Care Ontario works to reduce the number of people diagnosed
with cancer, and make sure patients receive better care every step of the way. Cancer Care Ontario
explains the cancer care system within Ontario and provides information of the various LHINS and lists
regional Cancer facts.
The Ontario Ministry of Health and Long-Term Care
http://www.health.gov.on.ca/en/
The Ontario Ministry of Long-Term Care can provide Ontarians with information about drugs covered and
not covered as well as other health information as it pertains to the province of Ontario and to the Ontario
Health Insurance Program (OHIP).
Community Information Toronto
www.211Toronto.ca
The free 24 hour telephone line helps people find services in Toronto. For example they can ell you
where to go for counseling, home support, or child care services. They can answer questions in other
languages other than French
Closing The Gap Health Care Group
Closing The Gap provides rehabilitation therapy services, including physiotherapy, occupational
therapy, speech-language pathology, social work, dietitian services, nursing and personal support
services to homes, schools, work places and long-term care facilities in local communities
including the Greater Toronto Area, Owen Sound, Barrie, St. Thomas, Muskoka and Huntsville.
Coping with Cancer and its Treatments
Princess Margaret Hospital: The Healing Journey
www.healingjourney.ca or 416-946-2062
This is an educational program for cancer patients and family members. The courses help you deal with
the stress of cancer and cancer treatment. You learn coping and healing skills. The courses are led by Dr.
Alastair Cunningham, a psychologist, mind-body researcher, and cancer survivor. You need to register
and pay a fee.
Relaxation Training
416-946-4501 Ext. 5580
You meet with us one-on-one. We talk about how you and your family members can manage stress while
you are having treatment. Ask your doctor to arrange an appointment. If your first language is not English,
we can get an interpreter for you.
Group Relaxation Training
(416) 946-4501 Ext. 5580
Held every Wednesday at 1:00 p.m., this is a group that helps you learn relaxation skills and techniques.
Patients’ family members and friends welcome.
Patient Family Resource Centres 416-946-4501 x 3691
Here patients and families have access to information and resources in a supportive environment.
Conveniently located in the main floor atrium of Princes Margaret Hospital and in the
12
Leukemia/Lymphoma Clinic (waiting area, 2
th
area, 5 floor).
nd
floor) and in the Psycosocial Oncology Program (waiting
 Toronto General Hospital: ELLICSR: Surviving and Thriving
(416) 946-4501 ext. 5090
This informal group session is hosted by Dr. Buckman. He will discuss why the word cancer is so
frightening and how you can understand and cope with your fears.
Sunnybrook Odette Cancer Centre
Psychological Services 416-488-5801
Psycohological consultation, support and counseling for individuals newly diagnosed with cancer,
recovering from surgery, chemotherapy or radiation treatment, survivors, patients with recurrent or
advanced cancer, for caregivers and for the bereaved.
Oncology Social Work Services 416-488-5801
Helps patients and their families cope with the lifestyle changes associated with diagnosis and treatment
of cancer. Provides assessment of patient and family needs, supportive and provides counseling and
referrals to appropriate community resources for additional care.
Pastoral Services 416-480-4421
Offers spiritual and emotional support to all patients and their loved ones, respecting religious belief,
language, ethnic origin and economic status.
The Ottawa Hospital Cancer Centre
613-737-7700 ext. 70107 or www.ottawahospital.on.ca/wps/portal/library
Resource library and community calendar of support groups and support services available in the Ottawa
Region.
Maplesoft Cancer Centre Ottawa
1500 Alta Vista Drive, Ottawa, K1G 3Y9 or 613.247.3527 or www.ottawacancer.ca
Breaking the Isolation: Support Groups & Social Service Organizations
Wellspring : Locations in Toronto, Brampton, London, Oakville, Stratford, Thorold and Niagara
www.wellspring.ca
There are several Wellspring support centers in Ontario. They run free discussions and support groups
for you and your family/caregivers can attend. Some groups include yoga, nutrition and exercise, etc.
Canadian Cancer Society: Locations throughout Ontario
www.cancer.ca or 1-888-939-3333
Group Support: Offers self help groups for cancer patients, their families and friends. They give you
emotional support and practical help. The groups meet at three different locations in Toronto.
Cancer Connection Peer Support Program: 1-800-283-6750
Anywhere in Ontario, you can be matched with someone who can talk to you over the phone. These
people are trained volunteers who have been through a trained cancer experience like yours. The phone
calls are completely private.
Community Care Access Centre: Locations throughout Ontario
http://www.ccac-ont.ca
Community Care Access Centres (CCAC) can connect you with the care you need, at home and in your
community. CCAC can help you stay in your own home longer by providing Care in Your Home and by
coordinating Care in Your Community, including specialized support services. CCAC can provide you with
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information about Long-Term Care Options if it becomes too difficult for you to live independently at
home.
Glida’s Club
www.glidasclubtoronto.org or 416-214-9898
This is for people cancer and their family/friends. The services provided include support groups,
workshops, lectures, social activities, stress management workshops and a magical room (“Noogieland”)
for children.
Dorothy C. Madgett
416-340-7070
This clinic gives classes on relaxation and exercise that are taught by physiotherapists. The classes are
90 minutes long.
Toronto and District Myeloma Support Group-Thornhill
www.cancerfoundation.org or 905-669-5852
A support group that occurs every two months which includes Myeloma survivors and their caregivers
Wellwood-Hamilton
www.wellwood/on.ca or 905-389-5884
This is a community based organization that gives information and support to cancer patients, their
families, caregivers and health care providers. They offer cancer education series, support groups and
classes on coping skills
Hearth Place-Oshawa
www.hearthplace.org or 905-573-4833
This is a community based organization that gives information and support to cancer patients, their
families, caregivers and health care providers. They offer cancer education, peer support, art support,
journaling, therapeutic touch and “Look good Feel Better” workshops
Hopespring Cancer Centre
www.hopespring.ca or 519-742-4673
HopeSpring was created to assist people to move beyond the fear, confusion, and frustrations
surrounding a cancer diagnosis and treatment. Offering a variety of programs and services, all designed
to create a greater sense of confidence and control. Hopespring also provides personal and group
support, a free wig boutique, and an excellent resource centre.
Lymphoma Foundation Canada – Kitchener Chapter
Contact Mary Jon Lachance at [email protected]
The Waterloo Region Lymphoma Support Group is comprised of lymphoma patients, their
families and caregivers in the Waterloo Region and surrounding areas.
Leukemia Association Ottawa Support Group
www.ottawaleukemiasupportgroup.ca
This is a support group meant for those with leukemia and their families and friends, in order to provide
mutual support. People with leukemia, their caregivers, and friends are all welcome at the meetings.
Toronto and District Multiple Myeloma Support Group
www.myelomatoronto.ca or 416-759-6348
The Toronto & District Multiple Myeloma Support Group is Canada's first multiple myeloma support group,
established in 1996. It is comprised of multiple myeloma patients and their primary caregivers and grew
out of a need for information and mutual support in dealing with this rare cancer.
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Multiple Myeloma support group of Ottawa
http://www.myelomacanada.ca/en/ontario.htm#ottawa or Elie (613) 228-1056
The Multiple Myeloma Support Group of Ottawa is a patient-managed and patient-centered group that
provides information to newly diagnosed patients as well as a circle of mutual support from those who are
further along in their journey with myeloma. From patients, caregivers, family and friends we learn how to
live with this disease
Scarborough Support Services
416-750-9885
Trained volunteers are matched with clients to help address social isolation. Volunteers provide personal,
continuous one-to-one relationships with clients at their residence and may take on tasks such as reading
and letter writing.
Senior People’s Resources in North Toronto (SPRINT)
(416) 481-6411
Provides a variety of support services and social events for persons 55 and over living north of Bloor and
south of Highway 401 between Bathurst and Bayview.
Victorian Order of Nurses
1-866-817-8589 or 1-800-727-1579
VON offers more than 75 different home care, personal support, and community services to enhance
each client’s quality of life by providing them with the personal assistance and the support needed to
make them comfortable in their own home
Evergreen Hospice Whitchurch-Stouffville
www.evergreenhospice.org or 1-800-632-0465
Evergreen Hospice is a non-profit agency providing supportive care to people of all ages in Markham and
Whitchurch-Stouffville who are dealing with a life-threatening illness, death and bereavement care for
family and friends. Website includes excellent online resources and articles.
Infertility Awareness Association of Canada
http://www.iaac.ca/content/support-groups
An organization, providing educational material, support and assistance to individuals and couples who
are experiencing the anguish of infertility
Caregiver Support Services
Family Caregiver Support Network 416-487-2045
Information and referral to caregiver groups and services, networking meetings, tech help, consultations
to existing and emerging group and programs, resource directory and a library. A peer support telephone
line on Tuesdays ad Thursdays from 1 p.m. to 4 p.m.
Visiting Homemakers Association 416-489-2500 or Toll-free: 1-888-314-6622
A service providing relief to caregivers of adult family members. A respite care worker comes into the
home to provide a break to caregivers including preparation of meals and socialization for the dependent
adult family member.
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Young Adult Community Organizations
Rebounders Canada - www.rebounders.ca
A key focus of Rebounders is to make survivors aware that they are not alone in dealing with the constant
challenges that follow survival of childhood cancer. Through creating regular get-togethers, new
friendships have developed resulting in a special community of survivors provide support to each other.
Rebounders currently hosts twelve events a year. All are currently in the Toronto area; however our goal
is to encourage the development of chapters in major Canadian cities.
You Can Connect – Wellspring
http://www.wellspring.ca/Sunnybrook/Programs/Full-List-of-Programs/You-Can-Connect.aspx
The You Can Connect program provides a space for young adults with cancer to get together socially,
offer support and access educational resources specific to their experiences as young adults. Find them
on Facebook.
Young Adults Cancer Canada - www.youngadultcancer.ca
To build a community of young adults diagnosed with cancer that provides information, support, skills and
opportunity.
Retreat Yourself: A Young Adult Cancer Retreat- www.youngadultcancer.ca/retreat_yourself/ Retreat
Yourself weekends offer an opportunity to get together with other young adults with cancer. Many of them
are recently out of treatment and have never attended another Young Adult Cancer Canada program. We
share our stories and talk about what’s bothering us about cancer, hang out, let loose, and build
relationships you’ll value for a long time.
Ontario Specific Financial Resources
Ontario Works and Ontario Disability Support Program (ODSP) - 1-888-789-7499 or 416-325-5666
Programs are available to people with low incomes and little assets. You must first apply to Ontario
Works. If the illness is long and severe, Ontario Works will make a referral to the Ontario Disability
Support Program.
Trillium Drug Plan (TDP) - TDP is a provincial program that considers your income and family size to
determine a deductible. Once you have paid the deductible each year, you may qualify for Ontario Drug
Benefits. Their year runs from August 1 to July 31. Forms are available at any pharmacy or by calling 1800-268-1154. For more help call Supportive Care at 519-685-8622 and make an appointment with a
social worker.
Cancer Drug Assistance Program (C-DAP) - Cancer Care Ontario is testing a new program that will
help pay back money you spend on medicine. Its aim is to allow cancer patients to focus on their
treatment, and health care professionals can concentrate on delivering patient care. C-DAP encourages
patients or health care professionals to call a bilingual toll-free support line at 1-877-681-6551. A program
professional will investigate reimbursement options for oral chemotherapy and supportive cancer
therapies provided outside of hospitals.
Ontario Government Funded Drug Plan - 1-888-789-7499 This plan is available if you are 65 years or
older or on homecare or on Ontario Works or on ODSP.
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Northern Ontario Families of Children with Cancer: http://nofcc.ca NOFCC has become a
recognized provider of services that help northern families cope with the experience of childhood cancer.
NOFCC programming is based on research into the needs of the group.
Assistive Device Program: 1-800-268-6021 ADP provides financial assistance for equipment required
by persons with long-term physical disabilities. Equipment covered by this program which may be
required by some candidates includes communication, vision and hearing aids, enteral feeding supplies,
prosthetic devices, respiration equipment, wheelchairs and more.
Wellspring Money Matters Program: 416-961-1493
http://www.wellspring.ca/National/Locate-a-Centre/Money-Matters-Resource-Centre.aspx
The Money Matters Program has information on government income programs, community resources and
support to help cancer patients cope with the financial difficulty that can come with a cancer diagnosis.
Individual appointments with a Money Matters case manager are also available.
Resources for Hair Loss from cancer Treatment
The Princess Margaret Hospital lodge
www.pmhlodge.org or 416-413-7412
A volunteer run program that offers free attractive wigs, turbans, and other head coverings to people who
have lost their hair from cancer treatment
Look Good Feel Better
www.lgfb.ca or 1 800 914 5665.
The organization provides women with skin care techniques, cosmetic application and wig/scarf use to
enhance the natural beauty of women affected by cancer
Transportation
Canadian Cancer Society 1-888-939-3333
The CCD provides free transportation to and from treatment centers in Ontario. You need to book this
service at least 4 days before your appointment. You can find your local CCD by calling the number
above
Canadian Red Cross Society 1-877-260-9673
You can use the society’s van service or have a volunteer take you to and from your appointment. The
amount you pay depends on your financial situation. Call the number above to find the office closest to
you
TTC WheelTrans www.ttc.ca or 416-393-4111
The Toronto Transit Commission runs offers this service to people who cannot get onto public transit
vehicles and/or have to use canes, walkers, or wheelchairs to get around. The cost for this service is the
regular TTC fare. The service operates within Metro Toronto. You have to be interviewed to see if you are
eligible to use this service, call the number above to schedule an interview
Outside of Toronto Assisted Public Transportation Services
Ajax Pickering Transit Authority: 905-683-4114 or www.townofajax.com/aptalspecial.asp
Barrie Accessible Community Transportation Service: 705-739-4209 or www.city.barrie.on.ca
Handi Transit Incorporated (Oshawa, Whitby, Scugog, Uxbridge and Clanington): 905-571-1222 or
www.handitransit.com
Oakville Care-A-Van: 905-337-9222 or www.oakvilletransit.com
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Transhelp (Region of Peel): 905-791-1015 or www.region.peel.on.ca/transhelp
YRT Mobility Plus (Aurora, East Gwillimbury, King, Markham, New Market, Richmond Hill,
Vaughan, Whitchurch-Stouffville): 905-762-2112, 1-886-744-1119 or www.yorkregiontransit.com
Regional Accommodations
Quinte Thousand Island Lodge
1- 800-567-5722
The Cancer Centre of Southeastern Ontario is a component of the Integrated Regional Cancer Program
at the Kingston General Hospital. The Lodge is a hostel-type accommodation operated by the Cancer
Centre. Patients and any medically required escorts can stay in small private bedrooms with shared toilet
and bathroom facilities free of charge. Call for pricing and reservations
Thameswood Lodge
519-667-6727
Thameswood Lodge is a 62-bed facility run by the London Regional Cancer Program. Its purpose is to
provide lodging for patients who need to travel more than 40 km for their cancer treatments. Thameswood
Lodge is not a treatment facility. It is a fragrance free and smoke free environment. For information or to
book a room, call the number above
Maurice J. Grimes Lodge
613-725-6328 ext. 10355
The Lodge was built, equipped, and furnished by the Canadian Cancer Society (CCS) and is managed by
The Ottawa Hospital Cancer Centre (TOHCC). It is provided for Ontario residents living outside of Ottawa
who require medical testing or treatment at the TOHCC. For more information call the number above
Rotel
e-mail: [email protected] Reservations: or 1-800-267-4700
Rotel is a 51-room, non-profit motel facility serving patients and families using Ottawa-area hospitals.
Designed to keep patients and their loved ones in close touch and to ease the stress on the lives of
outpatients. It is conveniently located on Smyth Road, next to The Ottawa Hospital Cancer Centre –
General Campus.
The Princess Margaret Hospital Lodge
416-413-7402
The Princess Margaret Hospital Lodge is a unique place for cancer patients and their families who come
to Toronto for cancer treatments. It is a self-care facility with 24 hour nursing coverage to assist and
support patients during the active phase of their treatment.
TBayTel Tamarack House
1- 877-696-7223
TBayTel Tamarack House is a lodge for regional cancer patients. It spans the entire top floor of the
Medical Centre, only metres from the Thunder Bay Regional Health Sciences Centre
Ronald McDonald Houses
Email [email protected] or 1-800-387-8808
Ronald McDonald Houses provides a home away from home for the families of seriously ill children who
are staying at a nearby hospital. Our Houses offer families so much more than just a roof over their
heads. They have qualified staff and dedicated volunteers who are committed to taking care of the day-today essentials of running a home, so families don’t have to worry about them. They have programs that
offer everything from education to meditation. And they are filled with many different families who all
share a common bond – love for their sick child.
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Ontario Long Term Care Association
www.oltca.com or email [email protected] or (905) 470-8995
OLTCA is the largest long term care provider association in Ontario and the only association that
represents the full mix of long term care operators - private, not-for-profit, charitable and municipal.
Member homes are regulated by the Ontario Ministry of Health and Long Term Care and provide care
and accommodation services to residents throughout Ontario.
Outdoor Adventures
Camp Trillium: www.camptrillium.com
The Trillium Childhood Cancer Support Centre offers and promotes recreational experiences to bring
children with cancer and their families together. The Trillium Centre provides an environment that
normalizes relationships and experiences, helping children and their families in the healing process and
enhancing their quality of life
Camp Oochigeas: www.ooch.org/
Camp Oochigeas offers year-round programs for children affected by childhood cancer at our site in
Muskoka, at SickKids Hospital, at our Ooch Downtown facility in Toronto and in the community
Camp Quality http://www.campquality.com
A non-profit, volunteer organization that, in addition to our signature week-long camping experience,
provides year-round support for children with cancer (receiving treatment or in remission) and their
families
Cottage Dreams – www.cottagedreams.org or 705.457.9100
Cottage Dreams offers recent cancer survivors and their families time away at a donated, private cottage
to recover, reconnect and rebuild after treatment. Cottages are available on a year-round basis in
communities across Ontario. Applications available online.
First Descents – www.firstdescents.org
First Descents offers young adult cancer fighters and survivors (ages 18 to 39) a free week-long outdoor
adventure experience designed to enable them to climb, paddle and surf beyond their diagnosis, defy
their cancer, reclaim their lives and connect with others doing the same.
Children’s Organizations
Candlelighters
www.candlelighters.net or 613-715-9157
Candlelighters provides programs and services “exclusively” for children with cancer and their families.
Candlelighters’ programs and services are aimed at needs of the entire family, and deal mainly with
alleviating both the emotional and financial stress that families of children with cancer deal with on a daily
basis. Candlelighters works very closely with professional staff at the Children’s Hospital of Eastern
Ontario in the development of programs and relies on the strong relationship for smooth program delivery.
ChildCan-London Health Sciences Building
www.childcan.on.ca or Toll Free: 1-800-966-0631
Childcan helps children and their families cope with the diagnosis of cancer by providing financial, social,
and emotional support, ensuring the child remains the sole focus as they face their cancer journey.
Families of Children with Cancer
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www.fcco.org or 416-465-5157
Families of Children with Cancer represents the over 700 families currently in treatment with a childhood
cancer at Toronto’s Hospital for Sick Children. Also representing bereaved families.
Interlink Community Cancer Nurses
http://www.pogo.ca/care/interlink/
Interlink nurses understand the challenges facing families whose children have cancer and are
experienced with the care for children with malignant disease. Moving with the patient and family between
hospital, community services and home, Interlink nurses provide cancer teaching for community nurses
involved in their care and facilitate navigation of the health care system for families, helping them to
locate and access community and hospital resources.
Pediatric Oncology Group of Ontario (POGO)
http://www.pogo.ca
POGO is an umbrella organization which coordinates policy development and programs for pediatric
cancer control in Ontario. POGO seeks to assure equal access for children and their families to care that
conforms to agreed standards. POGO promotes research, continuing professional education and a
greater awareness of the malignant diseases of childhood.
Starlight Children’s Foundation Ottawa
www.starlightcanada.org or 613-683-8025
Starlight Children’s Foundation Canada has been dedicated to improving the quality of life for children
with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education
and family activities that help them cope with the pain, fear and isolation of prolonged illness. We
understand what families go through when a child is sick, and how important it is to find relief from
constant worry and isolation. Our programs have been proven to distract children from their pain, help
them better understand and manage their illnesses, and connect families with others facing similar
challenges so that no one feels alone.
Sunshine Children’s Foundation
519-642-0990 or Toll-free 1-800-461-7935 located in London, Ontario
The Sunshine Foundation of Canada is a national charitable organization that makes dreams come true
for children with severe physical disabilities or life-threatening illnesses
Grief and Bereavement
Bereaved Families of Ontario
www.bereavedfamilies.net/contact.htm
At Bereaved Families, we dedicate our work to bereavement support through self-help and mutual aid.
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1502-480 University Ave., Toronto, ON M5G 1V2 | 416.585.2873 ext. 2438 | 1.866.585.2873
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