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 lucy.dicarlo@lls.org 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 lucy.dicarlo@lls.org 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 lucy.dicarlo@lls.org 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/ 2 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 3 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 4 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 5 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 6 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) 7 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 info@aamac.ca or 1-888-840-0039 8 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. 10 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. 11 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 13 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 mjlachance@golden.net 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. 14 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. 15 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. 16 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 17 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: inquiries@rotel.ca 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 rmhc@ca.mcd.com 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. 18 Ontario Long Term Care Association www.oltca.com or email info@oltca.com 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 19 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. 20 1502-480 University Ave., Toronto, ON M5G 1V2 | 416.585.2873 ext. 2438 | 1.866.585.2873 21
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