[Hopespringpcsg] FW: Get Your Hope Notes Here 🌞 x1
Glen Tolhurst
glen.tolhurst at sympatico.ca
Mon Jun 6 07:41:27 EDT 2022
Hi all:
See below for the weekly e-letter, Hope Notes, from HopeSpring.
Note the PCSG W-W monthly meeting on 28 Jun 22 will be Hybrid format with both in-person & ZOOM participation.
Take care & sa well.
Glen
Sent from Mail for Windows
From: Mary Lou at HopeSpring Cancer Support Centre
Sent: June 6, 2022 7:30 AM
To: Glen
Subject: Get Your Hope Notes Here 🌞
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Dear Glen,
Let us share what's happening remotely at HopeSpring this week. We welcome you to join us for our programming offered online via Zoom.
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Program Highlights for this Coming Week
Registration and full calendar available here
Three Ways to register:
1. Follow the links below
2. Visit www.hopespring.ca
3. Call 519-742-4673
This Week:
• Monday, June 6 - Cancer Care Counselling via Zoom or Telephone, Peer Support via Zoom 4:30-6:30 pm, Music Therapy for the Individual with Rianna via Zoom, Ukulele Group Music Therapy with Rianna via Zoom 2:00-3:00 pm
• Tuesday, June 7 - Cancer Care Counselling via Zoom or Telephone, Women's Support Group Daytime with Tammy via Zoom 11:30 am-1 pm, Gentle Yoga Symptom Management with Tammy via Zoom 1:30 pm-3 pm, Peer Support via Zoom 10:30 am-12:30 pm, Women's Support Group with Christina via Zoom 6:30-8:00 pm
• Wednesday, June 8 - Cancer Care Counselling via Zoom or Telephone, Peer Support via Zoom 4:30-6:30 pm, Therapeutic Touch with Gloria via Zoom, Men's Support Group with Shawn via Zoom 6:30-8:00 pm, Music Therapy for the Individual with Rianna via Zoom, Music Therapy Support Group
with Rianna via Zoom 2:00-3:30 pm
• Thursday, June 9 - Cancer Care Counselling via Zoom or Telephone, Tai Chi with Judy via Zoom 10-11:30 am, Peer Support via Zoom 10:30-12:30 pm, Healing and Cancer Empowerment Series with Dr Rob Rutledge with Gloria via Zoom 10:00-11:00 am, Yoga for Cancer Recovery
with Tammy via Zoom 6:30 pm-8:00 pm
• Friday, June 10 - Cancer Care Counselling via Zoom or Telephone, Peer Suppor
t via Zoom 4:30-6:30 pm
• Saturday, June 11 - Peer Support via Zoom 10:30 am-12:30 pm, Puddle Jumpers via Zoom 9:30 am-11:00 am, Expressive Arts for Youth via Zoom 2:00-3:30 pm, Joyful Art Expressions with Char via Zoom 9:30-11:30 pm, Therapeutic Touch with Susanne via Zoom, Youth Music Therapy
with Rianna via Zoom 11:30-12:30 pm
• Sunday, June 12 - Little Scientist
via Zoom 12:00 pm-1:00 pm
Following Week:
• Monday, June 13- Cancer Care Counselling via Zoom or Telephone, Peer Support via Zoom 4:30-6:30 pm, Reflexology with Beverley via Zoom, Music Therapy for the Individual with Rianna via Zoom, Ukulele Group Music Therapy with Rianna via Zoom 2:00-3:00 pm, Caregivers Support Group via Zoom 4:00-6:00 pm, Therapeutic Touch
with Susanne via Zoom
• Tuesday, June 14 - Cancer Care Counselling via Zoom or Telephone, Support Group Daytime with Tammy via Zoom 11:30 am-1:00 pm, Peer Support via Zoom 10:30 am-12:30 pm, Gentle Yoga Symptom Management
with Tammy via Zoom 1:30 pm-3 pm
• Wednesday, June 15 - Cancer Care Counselling via Zoom or Telephone, Peer Support via Zoom 4:30-6:30 pm, Therapeutic Touch with Gloria via Zoom, Music Therapy for the Individual with Rianna via Zoom, Music Therapy Support Group with Rianna via Zoom 2:00-3:30 pm, Meditation with Carolynn
via Zoom 6:60 - 7:30 pm
• Thursday, June 16 - Cancer Care Counselling via Zoom or Telephone, Peer Support via Zoom 10:30-12:30 pm, Yoga for Cancer Recovery with Tammy via Zoom 6:30 pm-8:00 pm, Healing and Cancer Empowerment Series via Zoom 10:00-11:00 am, Tai Chi with Judy via Zoom 10-11:30 am, Ovarian Support Group
via Zoom 1:30 - 3:30 pm
• Friday, June 17 - Cancer Care Counselling via Zoom or Telephone, Peer Support
via Zoom 4:30-6:30 pm
• Saturday, June 18 - Peer Support via Zoom 10:30 am-12:30 pm, Youth Music Therapy with Rianna via Zoom 11:30-12:30 pm
• Sunday, June 19 - Little Scientist via Zoom 12:00 pm-1:00 pm
Program Focus
Check out Music Therapy at HopeSpring. Learn to play an instrument, like a ukulele, more options available. Are you a teen affected by cancer, we also have a youth group.
Individual sessions are available - For individual sessions, please email Nohelia at volunteer at hopespring.ca for times and details
Music Therapy Support Group and Ukulele Support Group Registration available now. Classes are via Zoom.
Healing and Empowerment Series - Dr. Rob Rutledge
Month: June Dates: Thursdays - June 2, 9, 16, 23
Time: 10-11am
Registration and more info here
HopeSpring offers mediation classes. Registration and info here
Meditation has been used as a means to achieve healthy thought management by exercising control over thoughts and emotions. In this group program, cancer patients and caregivers are taught mindfulness meditation exercises and are encouraged to practice them at home to the greatest extent possible based on interest and health. This program is especially suited to members who are trying meditation for the first time.
Note: Reiki with Dee is cancelled for the month of June due to personal reasons.
The Cancer Stories Project Updates
Natalie our Principal Interviewer:
Natalie Kononenko
Professor (retired)
nataliek at ualberta.ca
Editor's Note: As mentioned in previous newsletter editions Natalie's passion for "The Cancer Stories Project" is driven by the fact that she is also a cancer patient. As you may know everyone's cancer journey is different, she is looking to discover the commonalities in other's experiences in the interviews, document her research findings and turn it into written form in order to assist the medical community, caregivers, loved ones to have a better understanding of what the cancer journey of a patient and how to better understand their needs. She has a lifetime of expertise as an ethnographer.
What is ethnography in simple terms?
ethnography, descriptive study of a particular human society or the process of making such a study. Contemporary ethnography is based almost entirely on fieldwork . Ethnography is a study through direct observation of users in their natural environment rather than in a lab.
Sick Syndrome
by Natalie Kononenko
I was introduced to the term “sick syndrome” by one of my former students who is now an intern in Ottawa. What it refers to is patients who, upon diagnosis, live up to – or rather down to - the definition of themselves as sick. Once told they are that they are sick, these patients start to look and act sick even if they had done neither prior to diagnosis. The term “sick syndrome” captured what I had seen in the hospital during my course of treatment. Many patients look pathetic. They neglect their appearance. They do not try to follow good eating and exercise habits. They become very passive and do not, or even refuse to, participate in their treatment. Several people have told me “I don’t know and I don’t want to know. I just want the doctor to make me better.”
Sick syndrome is not a desirable situation because, as many support groups, including my own, argue, an informed patient who participates in his or her treatment is the one with the best chance of recovery. Informed patients can best help the doctor work toward a treatment by providing information about symptoms, side effects, needs. Attitude alone helps. The positive attitude of a patient who does not succumb to sick syndrome improves her or his chances of overcoming cancer, as well as his or her quality of life.
Why do people succumb to sick syndrome? One of the reasons, as I have written in an earlier essay, is that words matter and definitions encourage compliance. Another way to put it is that the way a person in a powerful position defines you is often what you will be or try to be.
Another reason that I have realized recently is the close resemblance between something that I had studied in my professional career and cancer treatment. The process of treatment is very much like the storyline of a magic tale. It is also very much like the structure of a video game. In essence, it is a quest narrative. A quest narrative starts with a problem. In tales, a dragon appears and ravages a kingdom. In video games, extraterrestrial monsters materialize and consume living flesh. Story attacks are like the attack of cancer on the patient. Even the three-part structure of the basic cancer treatment where the patient first undergoes chemo, then has what is left of the tumor removed by surgery, then is subjected to radiation to remove any bits of diseased tissue is like battling successive dragons, or nasty elves, or glob monsters.
Why is the resemblance between quest narratives and cancer treatment a problem? In a sense it is not – if the patient sees herself of himself as the hero of the quest. Having the patient see herself or himself as hero is possible even if she or he is most reliant on the doctor who prescribes treatment and even performs part of it. After all, in tales, heroes and heroines often have helpers who do anything from telling them how to battle the monster they must confront to battling the monster for them. In some video games, one must find clues or acquire weapons that lead to victory. These supporting features and beings in no way diminish the status of the hero or heroine.
If a person cannot see herself or himself as hero because the doctor is so important in her or his treatment, if she or he sees the doctor as the hero and herself or himself as the damsel (or dude) in distress, this is still not a problem – if one goes by folktale examples. Far from all captured princesses or imprisoned warriors are passive. The captured maiden in many tales helps
Sick syndrome
I was introduced to the term “sick syndrome” by one of my former students who is now an intern in Ottawa. What it refers to is patients who, upon diagnosis, live up to – or rather down to - the definition of themselves as sick. Once told they are that they are sick, these patients start to look and act sick even if they had done neither prior to diagnosis. The term “sick syndrome” captured what I had seen in the hospital during my course of treatment. Many patients look pathetic. They neglect their appearance. They do not try to follow good eating and exercise habits. They become very passive and do not, or even refuse to, participate in their treatment. Several people have told me “I don’t know and I don’t want to know. I just want the doctor to make me better.”
Sick syndrome is not a desirable situation because, as many support groups, including my own, argue, an informed patient who participates in his or her treatment is the one with the best chance of recovery. Informed patients can best help the doctor work toward a treatment by providing information about symptoms, side effects, needs. Attitude alone helps. The positive attitude of a patient who does not succumb to sick syndrome improves her or his chances of overcoming cancer, as well as his or her quality of life.
Why do people succumb to sick syndrome? One of the reasons, as I have written in an earlier essay, is that words matter and definitions encourage compliance. Another way to put it is that the way a person in a powerful position defines you is often what you will be or try to be.
Another reason that I have realized recently is the close resemblance between something that I had studied in my professional career and cancer treatment. The process of treatment is very much like the storyline of a magic tale. It is also very much like the structure of a video game. In essence, it is a quest narrative. A quest narrative starts with a problem. In tales, a dragon appears and ravages a kingdom. In video games, extraterrestrial monsters materialize and consume living flesh. Story attacks are like the attack of cancer on the patient. Even the three-part structure of the basic cancer treatment where the patient first undergoes chemo, then has what is left of the tumor removed by surgery, then is subjected to radiation to remove any bits of diseased tissue is like battling successive dragons, or nasty elves, or glob monsters.
Why is the resemblance between quest narratives and cancer treatment a problem? In a sense it is not – if the patient sees herself of himself as the hero of the quest. Having the patient see herself or himself as hero is possible even if she or he is most reliant on the doctor who prescribes treatment and even performs part of it. After all, in tales, heroes and heroines often have helpers who do anything from telling them how to battle the monster they must confront to battling the monster for them. In some video games, one must find clues or acquire weapons that lead to victory. These supporting features and beings in no way diminish the status of the hero or heroine.
If a person cannot see herself or himself as hero because the doctor is so important in her or his treatment, if she or he sees the doctor as the hero and herself or himself as the damsel (or dude) in distress, this is still not a problem – if one goes by folktale examples. Far from all captured princesses or imprisoned warriors are passive. The captured maiden in many tales helps the hero save her by telling him where her captor keeps his life essence or transposed soul. In one tale that comes to mind, it is stored in a jeweled case at the bottom of the sea. Similarly, a captured warrior who has been turned into a horse and is part of a herd of identical horses, can reveal to the maiden who comes to his rescue that one mark that will identify him as human and allow her to secure his freedom.
What does all of this tell us? Essentially that we, as patients, can – and should – see ourselves as active, powerful, and effective participants in our treatment no matter which role we see for ourselves.
To help patients do this, I would suggest that we get rid of the term “journey” as a way to conceptualize the process of dealing with cancer. It is much too passive a term. Let us use CANCER QUEST instead. In an earlier essay I suggested using the term “cancer champions” rather than cancer survivors for patients who have been successfully completed their treatment. This terminology attributes more agency to patients. Let us add “cancer quest” to the term “cancer champion.” This will help get rid of sick syndrome and promote better recovery.
Contact Natalie
Get a Chance to Tell Your Story! Natalie Kononenko guides you through the storytelling process.
Tell your cancer story, your successes, your challenges, your unique experiences, how you overcame your toughest challenges...
Receive a recorded copy of your interview, if you decide, your story could potentially assist in changing cancer care in the future.
But why is it so important to tell YOUR story?
• Stories draw upon our universal need for connection; in some fundamental sense we need stories.
• One of the most powerful ways of inspiring others is by using the one tool you have that no one else has - your life story. Your individual experience of the world is the most valuable asset you possess.
• Telling your story - with all its challenges, mistakes, failures, pain, setbacks as well as its joys, successes and victories - says something about what it means to be human.
• Source: gingerleadershipcomms.com
This week our Cancer Care Counsellor Chip talks about the importance of being rooted or grounded and shares a personal experience and and how he came to the realization of its importance in his own life. Read on here
**Being in nature, or even viewing scenes of nature, reduces anger, fear, and stress and increases pleasant feelings. Exposure to nature not only makes you feel better emotionally, it contributes to your physical wellbeing
Your Feedback Can Assist With Cancer Care of the Future
Take survey here
Take survey here
Need assistance booking your vaccine/booster? HopeSpring is here to help.
Positivity4Patients
Some positive messaging to share from our friend Helen Zhao at Positivity4Patients. Please send along your feedback to positivity4patients at gmail.com, let them know that you appreciate their work, it would make their day.
Look Good Feel Better Program Details
New Members who aren't familiar with Look Good Feel Better Program(s) would benefit from this educational piece. Look Good Feel Better have services for both teens and women.
Select the image above to view "The power of Look Good Feel Better"
Registration and Descriptions of LGFB Classes Here
Access registration for pilot workshop for men facing cancer here
Look Good Feel Better For Men
Looking good can help you feel better – physically and emotionally. And feeling better can put you in charge. Maybe it’s an important event. A family outing. Saturday night with friends. A big meeting. The list goes on. Whatever you want to do, you shouldn’t have to compromise because you don’t look “right” or feel quite yourself.
In fact, doctors agree a better outlook can begin by reducing the appearance-related side effects of cancer treatment.
This video will help you apply grooming basics to look confident and feel in control. It’s full of easy-to-follow tips you can use to get on with your life.
Watch the video and click the link below to learn more.
https://youtu.be/Yyb0KYHId7o
A $25 gift certificate will be provided to the first 10 participants who register and attend.
Alternate Programming
Prostate Cancer Support Group Waterloo-Wellington
Prostate Cancer Support Group Waterloo-Wellington-For 2022 we will continue to have support group meetings via ZOOM on the 4th Tuesday of each month.
If you would like to participate in this meeting please send an e-mail to info at pccn-waterloo-wellington.ca to pre-register by midnight the Monday before.
Next meeting is scheduled for Tuesday, June 28th @7pm.
We are looking into hybrid meetings combining ZOOM with in person attendance, more info to follow.
Are you a man with Prostate Cancer, a family member of someone with Prostate Cancer or a caregiver supporting someone with Prostate Cancer? The Prostate Cancer Support Group Waterloo-Wellington chapter is here for you.
In person meetings are suspended because of the pandemic, but PCSG Waterloo Wellington meets via ZOOM the fourth Tuesday of the month at 7pm. Join our mailing list for meeting invites.
You may join our mailing group by clicking here. To keep informed of the activities of Prostate Cancer Support Group – Waterloo Wellington. Go directly to our website, scan the QR code above.
Lessons Learned: My Prostate Cancer-and Yours
JUNE 7TH, 2022 | 7:00 PM PT/9:00 PM ET
The Tri-Cities Support Group's speaker will be Howard Wolinsky, a co-founder of Active Surveillance Patients International. Howard is an award-winning medical and science journalist from Chicago, who in his working days, wrote for the Chicago Sun-Times. He recently started writing a newsletter: TheActiveSurveillor.com
You can read more about Howard here and see his past writings here. Howard is also the author or co-author of three books about medical issues.
Since he has been so willing to speak to people and write about his experience with prostate cancer, he is an ideal choice to introduce the topic of how to talk about prostate cancer to family, friends and those with whom we come in contact. We are hoping that his talk will serve as a springboard for an interesting sharing of information on how comfortable people are to talk about their prostate cancer journey with others.
Register Here
Advanced Prostate Cancer
JUNE 8TH, 2022 | 4PM PT (7PM ET)
This group aims to meet the unique needs of advanced prostate cancer patients through the sharing of information, knowledge, and support.
Advanced prostate cancer patients can include anyone:
• with cancer that has spread (metastatic)
• with a castrate-resistant cancer (no longer responds to first-line ADT)
• with a high-risk or complex diagnosis
New participants will be given priority to discuss their situation. Partners and support people welcome.
Read all about the advanced prostate cancer support group team here.
Register Here
Active Surveillance Nationwide Support Group
June 9th, 2022 | 7:30 PM ET
Men who are currently on active surveillance are invited to join this support group to share about their journeys with this treatment method.
This group also welcomes newly diagnosed men with low- or moderate-risk prostate cancer looking to explore treatment options and learn more about active surveillance.
New attendees are given priority to discuss their situation and ask questions. Partners and support people are welcome.
Sign up for the Active Surveillance mailing list.
Register Here
Diabetes, Healthy Feet and You, Thursday June 23 9:30am - 12:00pm, 2 ½ hour virtual workshop.
An interactive workshop for people with diabetes to learn more about preventative foot care developed by Wounds Canada. Participants will understand the importance and impact of diabetes on the health of their feet and learn how to take care of them. Participants will receive a workbook and additional resources to help support their foot care plan at home.
For more information and to register see: https://www.wwselfmanagement.ca/Individual-Diabetes-HealthyFeet-andYou.htm Or phone 519-947-1000 x255
Better Sleep Tuesday 11:00am – 12:00pm June 14 to July 12 for 5 consecutive weeks
Do you ..have difficulty fallings asleep, falling back to sleep or wake up early and can’t fall back to sleep? If this sounds like you consider attending our 5-week group session to learn strategies to decrease insomnia and have a better sleep.
For more Information and to Register: https://www.wwselfmanagement.ca/Individual-Better-Sleep.htm Or phone 519-947-1000 x255
15 Minute Group Meditation Sessions with Gloria
Join Gloria, in partnership with Survivingbreastcancer.org, for 15 minutes of meditation, every Monday at 11am Eastern. Come with a question and allow your inner guide to provide an answer. Activate your internal healer.
To respect the virtual space, we will start promptly at 11am Eastern. Please arrive on time.
Learn more about Gloria, her breast cancer story, and her healing gifts on Survivingbreastcancer.org's blog and podcast.
RSVP for each session here: https://www.survivingbreastcancer.org/events-1/15-minute-group-meditation-with-gloria-2022-02-21-11-00
A Zoom link will be emailed to you after RSVPing.
Lifestyle
Have you found a terrific recipe or eating tip? Please share by sending it to marketing at hopespring.ca.
Cancer treatments kill cancer cells, but in the process they damage normal healthy cells and cause side effects. These side effects vary from person to person, and depend on the type of treatment, the part of the body treated, and the length and dose of treatment. Most side effects are temporary and go away after treatment ends. There are ways to control and manage side effects.
Read on here
Source: Cancer Treatment Side Effects and Nutrition by Cancer Council Victoria-Australia
Excerpt from the article - Changes in taste or smell
Some treatments and their side effects can change the way some foods taste or smell. Chemotherapy can change the taste receptors in the mouth. Radiotherapy or surgery to the head, neck and mouth area may damage the salivary glands and taste buds on the tongue. Food may taste bitter or metallic, or may not have as much flavour as before.
People often say that, “All food tastes the same”, “Food tastes like cardboard”, “Food tastes metallic”, “I no longer like the taste of my favourite food” or “I’ve gone off red meat, chocolate and alcohol”.
It’s common to have taste changes during treatment and for a short time afterward. Sometimes it can take several months for taste changes to return to normal.
If you have a sore mouth, sore throat or swallowing difficulties, talk to your doctor, speech pathologist, dentist or dietitian – some of the suggestions for managing taste changes (see table below) will not be suitable.
See Understanding Taste and Smell Changes for more information.
"During treatment, I developed an active sense of smell. I hated certain smells and did all I could to avoid them. My mouth felt very dry, which made food taste unappetising. Adding extra sauce helped." – Helen
How to manage changes in taste or smell
Taste changes
• Add extra flavour to food if it tastes bland, e.g. fresh herbs, lemon, lime, ginger, garlic, soy sauce, honey, chilli, pepper, Worcestershire sauce or pickles. See the marinade recipes.
• Experiment with different food, as your tastes may change. You may no longer like bitter drinks (e.g. tea, coffee, beer or wine) or sweet food (e.g. chocolate) even if you liked them before treatment. It is common to prefer savoury food over sweet.
• If meat tastes bad during treatment, replace it with other protein sources, e.g. cheese, eggs, nuts, dairy foods, seafood, baked beans, lentils or chickpeas.
• Add small amounts of sugar to food if it tastes bitter or salty.
• Use a straw so the taste of drinks isn’t as strong.
Smell changes
• Choose cold food or food at room temperature – hot food smells stronger.
• Reheat pre-prepared meals in the microwave so the cooking smell doesn’t put you off eating.
• Stay out of the kitchen, if possible, when food is being prepared. Ask family or friends to cook.
• Turn on the exhaust fan, open a window or cook outside on the barbecue to help reduce cooking smells.
Please contact Nohelia at volunteer at hopespring.ca or call 519-742-4673 (HOPE) for a request or further questions.
Donate to HopeSpring Cancer Support Centre
When you donate to HopeSpring, you are making an investment in the quality of life in our community. You’re directly helping to address a serious challenge, by providing the resources needed to lessen the burden of cancer.
The need to support vulnerable cancer patients has never been greater! Please consider donating today.
HopeSpring acknowledges that our offices are situated on the Haldimand Tract, land that was granted to the Haudenosaunee of the Six Nations of the Grand River, and are within the territory of the Neutral, Anishinaabe, and Haudenosaunee peoples
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Note from the Editor: Do you have comments or feedback?
We love to hear from you and will ensure that that your comments and feedback are read and passed on to the appropriate team member. Please email to marketing at hopespring.ca.
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