My Journey for Those Facing Cancer Today, in Honour of Those Lost to Cancer, and for Generations to Come, We Promise Progress

My journey For those facing cancer today, in honour of those lost to cancer, and for generations to come, we promise progress. Table of contents

Your cancer care journal Section 1: Medical details 6 Keep handouts and medical documents in the folder that came with your journal. Write down important information in the spaces provided. This section will be useful Your cancer care journal is an Alberta when you meet a new doctor or nurse or have a question about test results.

Cancer Foundation gift as you go through • My diagnosis • My side effects medications your cancer journey. • My treatment plan and progress • My side effects record • My medical history • My questions This journal can be a central place for you to • My treatment medications • My blood counts

• schedule appointments and social activities Section 2: My appointments 32 • write down your questions or concerns With ongoing treatments, follow-up appointments, social activities, and support,

• monitor your emotional and spiritual health the cancer journey can be a busy time. This section lets you keep all your appointments in one place. • help you manage your own care • plan a physical activity schedule  Section 3: Sources of help 58 There is a lot of help out there for people with cancer and their families. This section • maintain good nutrition has information on some of the most common resources. • store medical documents • Cancer centres • Care concerns • track side effects • Clinical trials • Rehabilitation • New patient information sessions • Psychosocial support • Nutrition departments • Spiritual care and counselling services Recording your journey in this journal will help • Patient education • Quitting smoking both you and your care team as it allows you to • Cancer patient navigation • have one location to access your reports, test results, imagery, and other important medical documents ♥ Section 4: Managing my health during treatment 76 • monitor your own recovery, helping your care team solve During treatment, you can take an active role in your health by monitoring and any problems during the healing process managing both your physical and emotional wellbeing. This section provides tips and worksheets to help with coping and adjustment, nutrition and physical activity. • have a complete record of your cancer diagnosis and treatment to show any new health-care providers  Section 5: Managing my health after treatment 100 Everyone's cancer journey is unique. Your cancer care People who face cancer often say they are forever changed. There is a sense journal is a personal record of your experience and has of finding a “new normal,” both physically and emotionally. This section provides useful worksheets and tips to help you keep an active quick tips and worksheets to help you adjust to your new normal and understand role in your care. nutrition and physical activity guidelines for the future.

Section 6: Alberta’s cancer-free movement 112 The Alberta Cancer Foundation makes just one promise: progress – progress towards our vision of a cancer-free future. Learn more about Alberta's cancer-free movement in this section.

Section 7: Glossary 118 About me 3

My name is

My contact info:

ADDRESS

CITY PROVINCE POSTAL CODE

Paste photo here HOME PHONE CELL PHONE

My birthday is

My blood type is A B AB O

ALBERTA HEALTH-CARE NUMBER

CANCER CARE NUMBER

x My emergency contacts are:

NAME

HOME PHONE CELL PHONE

NAME

HOME PHONE CELL PHONE

Attach a photo of yourself and write your name above to join Alberta's cancer-free movement.  My important contact numbers 5 My cancer doctor (oncologist or hematologist) My pharmacies / drugstores ?

NAME CANCER CENTRE PHARMACY PHONE Did you know?

You can paste important PHONE NAME PHONE business cards on the inside back cover of your cancer care journal for quick reference. My nurse practitioner My top personal contacts

NAME NAME PHONE

PHONE EMAIL

My cancer clinic NAME PHONE

EMAIL MAIN CLINIC PHONE

NAME PHONE CARE DEPARTMENT PHONE

CARE DEPARTMENT PHONE EMAIL

EMERGENCY PHONE Telephone Nursing Service

HOME CARE PHONE Cross Cancer Institute 780 432 8919

Tom Baker Cancer Centre 403 521 3735 My family doctor HEALTHLink Alberta – 24 hours a day 7 days a week nurse telephone advice and health information service.

NAME PHONE Toll free 1 866 408 LINK (5465)

Calgary 403 943 LINK (5465)

Edmonton 780 408 LINK (5465)

HEALTHLinkAlberta.ca

Alberta Cancer Foundation albertacancer.ca Section 1: It is the trouble that Medical details never comes that causes the loss of sleep.

Chas. Austin Bates My diagnosis My treatment plan and progress 9

Your doctor will explain your diagnosis. Write this information here for quick reference. Place a check mark beside all of the treatment descriptions that apply to you. Then keep a brief record of these treatments in the space provided below each type. Date I was diagnosed Surgery My diagnosis When I received surgery

As the 1st treatment for my cancer

After I had radiation treatments to shrink the tumour

After I had chemotherapy treatments to shrink the tumour

T (tumour size): To remove tumours during the process of my care

N (lymph node involvement): Other:

M (metastases): My surgery record:

Grade:

DATE REASON Stage:

SURGEON LOCATION Hormone status:

DATE REASON Notes

SURGEON LOCATION

DATE REASON

SURGEON LOCATION

DATE REASON

SURGEON LOCATION

Alberta Cancer Foundation albertacancer.ca My treatment plan continued 11

Radiation therapy Chemotherapy

When I received radiation therapy treatments When I received chemotherapy

As the 1st and only planned treatment for my cancer As my 1st and only planned treatment

Before surgery to shrink the tumour Before my surgery to shrink the tumour

After surgery to attack any remaining cancer cells After my surgery to attack any remaining cancer cells

Along with chemotherapy to attack cancer cells Along with radiation therapy to attack cancer cells

To reduce my pain or symptoms during my other treatments As part of a stem cell transplant

As part of a stem cell transplant Other:

Other: My 1st chemotherapy treatment plan:

My radiation treatment plan: IV treatments

Radiation start date Pill treatments

Both IV and pills Planned number of treatments Chemotherapy start date

Planned frequency of treatments Planned number of treatments

Use calendar section starting on page 32 to mark specific treatment dates. Planned frequency of treatments

I received an internal radiation therapy treatment Location of treatments

Had internal implants (brachytherapy) as my main treatment Specific chemotherapy drugs

Treatment date

Drank a liquid radioactive substance to treat my thyroid cancer after surgery Use calendar section starting on page 32 to mark specific treatment dates.

Treatment date

Alberta Cancer Foundation albertacancer.ca My treatment plan continued 13

My 2nd chemotherapy treatment plan: Immunotherpy

IV treatments When I received immunotherapy treatments

Pill treatments As my 1st and only planned treatment Both IV and pills After my surgery to attack any remaining cancer cells Along with radiation therapy Chemotherapy start date Along with chemotherapy Planned number of treatments Other: Planned frequency of treatments

My immunotherapy treatment plan: Location of treatments Specific immunotherapy drugs

Specific chemotherapy drugs

Method of treatment

My 3rd chemotherapy treatment plan: Treatment start date (or only date for single treatment)

IV treatments Planned frequency of treatments Pill treatments Both IV and pills Location of treatments

Chemotherapy start date Use calendar section starting on page 32 to mark specific treatment dates.

Planned number of treatments

Planned frequency of treatments

Location of treatments

Specific chemotherapy drugs

Alberta Cancer Foundation albertacancer.ca My treatment plan continued 15 Hormone therapy Stem cell transplant ? When I received my hormone treatments When I received my stem cell transplant Did you know? As my 1st and only planned treatment As my 1st and only planned treatment Pain management After my surgery, radiation therapy or chemotherapy After other treatments If you have concerns about As a long term treatment to help prevent a recurrence of my cancer pain or other symptoms Other: related to your cancer or your treatments, or have questions Other: about palliative care, speak A stem cell transplant usually requires months of preparation to your doctor. Your doctor as an outpatient, followed by a hospital stay for the main treatment. may involve another team My hormone treatment plan: Since there are many personal details involved in this major treatment, to help address these you will need to plan the progress of your care in close connection concerns, if necessary. Injection treatments with your care providers.

Pill treatments Notes Hormone therapy start date

Planned number of treatments

Planned frequency of treatments

Location of treatments

Specific hormone controlling drugs

Use calendar section starting on page 32 to mark specific treatment dates.

Alberta Cancer Foundation albertacancer.ca My medical history My treatment medications 17

My allergies Your cancer doctor may prescribe medications for treatment or side effects. List drugs, food, other allergies and your reaction (e.g. rash, fever, hives, swelling): Keep track of all prescriptions here. Make copies of this page as needed.

Start date Allergy Reaction How For how Doctor who Start How Name of medicine much many prescribed it date often to take days

My current health issues or chronic conditions:

Arthritis Kidney disease

Asthma Liver disease

Depression Migraines

Diabetes Seizures

Heart disease Stroke

High blood pressure Other

Notes

Alberta Cancer Foundation albertacancer.ca My side effect medications 19

My non-prescription medications How For how Doctor who Start How Name of medicine much many prescribed it date often to take days

My vitamins, herbal medicines, and other treatments

Notes

Alberta Cancer Foundation albertacancer.ca 21 My side effects record While undergoing treatment, your care team may ask you to write down the symptoms you have each day using the key on the right hand side. Some of the common side effects patients experience are below. You may have some or none of these side effects, or you Cycle # of (Day 1 is the 1st day of chemo) may have others not listed here. However, this tool can help you remember the symptoms you would like to discuss with your care team. The numbers with stars mean you should Make copies as needed for each cycle of treatment. contact your care centre.

Day of cycle 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 Nausea 0 – no change 1 – eat / drink reasonable amounts *2 – 50% or less than normal fluid intake but can eat *3 – cannot eat / drink Vomiting 0 – no vomiting 1 – vomited once in 24 hours *2 – vomited 2 – 5 times in 24 hours *3 – vomited 6 – 10 times in 24 hours *4 – vomited more than 10 times in 24 hours Diet 0 – regular diet 1 – soft diet *2 – liquids only *3 – no intake Feel tired 0 – no change, usual activity 1 – mild, able to continue normal activity *2 – change in normal activity (bed rest less than 50% waking hours) *3 – in bed / chair more than 50% waking hours *4 – bedridden or unable to care for oneself Mouth sores 0 – none 1 – painless ulcers, mild redness *2 – painful, red, swollen / ulcers – can eat or drink *3 – painful, red, swollen / ulcers – cannot eat / drink Diarrhea 0 – none 1 – increase of 2 – 3 bowel movements / day *2 – increase of 4 – 6 bowel movements / day or stools during the night *3 – increase of 7 – 9 bowel movements / day *4 – 10 or more bowel movements / day Constipation 0 – none 1 – no bowel movements in 2 days *2 – no bowel movements in 3 days *3 – no bowel movements in 4 days Fever 0 – normal temperature (37.0 C or 98.6 F) 1 – temperature 37.1 – 37.9 C or 98.7 – 100.3 F *2 – temperature 38.0 – 40.0 C or 100.4 – 104.0 F *3 – temperature greater than 40.0 C or 104.0 F Anxiety 0 1 2 3 4 5 *6 *7 *8 *9 *10 no anxiety severe anxiety Coping 0 1 2 3 4 5 *6 *7 *8 *9 *10 no trouble trouble coping Pain 0 1 2 3 *4 *5 *6 *7 *8 *9 *10 no pain severe pain Skin changes 0 – none 1 – skin changes (redness / cracking) *2 – skin changes with pain but normal function *3 – skin changes with pain and interferes with function

0 1 2 3 4 5 *6 *7 *8 *9 *10 mild severe Other

Alberta Cancer Foundation albertacancer.ca My questions 23

Write down questions you want to ask your doctor or nurse. Bring your list to each appointment. Use the table to write down the answers.

Date Question Answer Date Question Answer

Alberta Cancer Foundation albertacancer.ca My blood counts 25

Cancer and cancer treatments can affect the cells in White blood cells (WBCs) your blood. Your doctor may do a full or complete blood White cell count measured in 109/L count (CBC) to check the blood cells in your body. Note: there may be a difference between the normal white cell count for different ethnic groups.

Your blood contains three kinds of cells:

• Red blood cells, which contain hemoglobin that carries oxygen through your body low normal high 4.0 to 11.0 • White blood cells, which fight infection and disease

• Platelets, which help your blood to clot Neutrophils (Gran) Also of interest in your complete blood count is your neutrophil level. A neutrophil is a type of white blood cell that is one of the first cell types to travel to the site Absolute neutrophil count measured in 109/L of an infection. Decreased neutrophil levels may be a response to various medications, Note: A minimum of 1.5 is usually required to continue treatment without a delay. Talk to your doctor about what your count may mean. including chemotherapy drugs.

You can request the results of your complete blood test and keep track of them 1.8 – 7.5 normal in the chart on pages 26 – 27. For easy reference, three of the most common normal ranges are on the next page. Note that normal values for your blood counts may vary between hospital labs. Red blood cells / hemoglobin (Hgb) Hemoglobin (Hgb) measured in g/dL Platelets

low normal high 140 to 180

Plasma low normal high 120 to 160

Red blood cells Platelets Measured in 109/L

White blood cells 140 – 450 normal

Ask your doctor what it means for you if your blood count is higher or lower than normal. Keep track of your blood counts in the charts on the next few pages.

Alberta Cancer Foundation albertacancer.ca My blood counts continued 27

Date Hemoglobin (g/dL) Platelets (109/L) White Cells (109/L) Neutrophils (109/L) Transfusions (no. of units)

Alberta Cancer Foundation albertacancer.ca 29

Notes

Alberta Cancer Foundation albertacancer.ca 31

Notes Notes

Alberta Cancer Foundation albertacancer.ca  Section 2: Don’t count every hour My appointments in the day, make every hour in the day count.

Anonymous  35 MONTH YEAR