Zoom meeting: April 22!

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The last few weeks have been a challenging time for everyone and we do hope you are managing and staying well and safe.  Since we are all staying home and self isolating except for essential things, Myeloma Canada have arranged for all of the support groups to have access  to, and arrange “virtual meetings”  using Zoom, which accommodate up to 100 participants.  Many other groups are already taking advantage of this, and we thought we would see if this would be helpful for our group.
We thought we might focus this meeting on issues affecting patients and caregivers with the current Covid-19 pandemic including:
1. How are you dealing with isolation?
2. What are the challenges you are facing?
3. Any concerns/ impacts on your treatment?
4. Is there any information or additional support that the group or MC could provide?
but no formal presentations are planned.
Some of you will be familiar with Zoom, but for those that are not, if you have a phone, mobile phone, computer or tablet you should be able to join the meeting (video is not essential, but audio connection is needed).
If you are interested (or may be interested) in joining the meeting on April 22nd (we have time booked from 7pm – 8:30pm, but may not take that long), please reply to this e-mail  by April 21st at the latest, and I will send you the meeting invite details and instructions on how to connect.  This allows us to maintain physical distancing but be socially connected without leaving our homes.
Hoping to talk to you next Wednesday,
Frank Shepherd
(on behalf of Robin, Jean and Glenn)

2020 Spring Meetings

The Ottawa-Gatineau Multiple Myeloma Community Network invites Myeloma patients, family, caregivers and friends to our monthly information and sharing meetings.

PLACE:         Maplesoft Centre, 1500 Alta Vista Drive.

TIME:            6:45-8:45 PM

The meetings begin with a guest speaker and discussion followed by a session where patients and caregivers share their experience with the disease. The mission of the Community Network is to provide hope and to empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and support and sharing experiences.

Wednesday, March 4th  

Tina Crosbie BSc. (Pharm), ACPR, RPh, Clinical Pharmacist, Hematology, Ottawa Hospital, Vice-President, Canadian Association of Pharmacy in Oncology. Tina’s topic will be Living Well with Myeloma: A Pharmacist’s Perspective.

Wednesday, April 1st    

Janelle Desjardins, RN, M.Sc.N., Manager, Psychosocial Oncology Program & Informatics (PSOP) Lead, Patient Education , Lead, Symptom Management. Jannelle will talk about the services offered to cancer patients and their families by the PSOP at the Ottawa general hospital.

Wednesday, May 6th    

Dr. Renata Francovitch, MD, FCFP, Dip. Sport Med., will talk about the vital importance of exercise to maintain myeloma patient’s bone and muscle strength.

Wednesday, June 3rd    
Dr. Arleigh McCurdy  will review the new patient MyChart reports and talk about familial connections in Myeloma, and the potential pros and cons of MGUS testing.

Ten things I learned as a Myeloma Caregiver…

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  1. Don’t panic.  Although there is,as yet,no cure, myeloma is one of the more manageable cancers.  There are many treatment options.
  2. The patient will be understandably upset and often overwhelmed on their myeloma journey.  Ideally there should be one designated caregiver who goes with the patient to all doctor consultations.  If not one person, then a team of family or friends.
  3. Myeloma treatment is very complex. During visits, take notes.  It is very easy to lose track of things.  Set up a pillbox that includes all medications.  That will help.
  4. Prepare for doctor visits by bringing a list of questions or concerns.  Your time with them is precious.  Keep an up to date list or spreadsheet of all medications.  Bring it to your appointment and have a copy ready if you have to go to the hospital.
  5. Your general practitioner is an essential part of their health care.  In my experience, it is best that the caregiver attends all these visits as well.
  6. Have a thermometer at the ready. Since myeloma suppresses the immune system, be very cautious about the onset of infections.  If a patient complains about chills, take the temperature.  If it goes above 38C, it is time to go to hospital.  If patient is too weak, call 911.  Many myeloma patients die of infections rather than the disease itself.
  7. Join a supportive community. Support groups meet on a regular basis providing you with many opportunities to expand your knowledge about treatment options and the experiences of other patients and caregivers.  Other sharing a similar experience will give you hope and empowerment.
  8. Although stem cell transplants are risky, it is offered, seriously consider doing the procedure.  It is effective in knocking back myeloma, but do not expect a cure.
  9. You will encounter many knowledgeable, caring and gifted health professionals.  They deserve your respect, gratitude and patience.  Let them know how you feel.
  10. Cherish every day.  Even the brutal ones.   Cancer is a journey that can take you deeper into the mysteries of love.

 

John Podgorski, caregiver to Irene Podgorski

Steps to a Cure: Our 2019 Community Walk

This year’s Walk was attended by over 250 participants and volunteers and probably represents our largest “meeting” of the year. It’s an opportunity for us to meet with other patients and their families, our medical doctors and others who support us, in an informal setting, and have some fun together as we enjoy the walk along the Ottawa River. With so many people participating, it makes us realize we are not alone when facing the challenges presented by Myeloma.

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Dr. Kew and Dr. McCurdy summarized some of the great progress that has been made in recent years in the treatment options and new drugs available, which continue to improve outcomes for Myeloma patients.  They noted the importance of the research funds we raise and the value of patient participation in their on-going research activities. This year our fundraising will help support development of CAR-T cell therapy leading to clinical trials for Myeloma patients in the Ottawa-Gatineau region, as well as a variety of activities at Myeloma Canada.

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As in previous years, we are grateful to a large number of volunteers who helped us organize this year’s Walk and to all who made such generous donations.   

In all, we raised over $60,000 for myeloma research! 

Thank You One and All!

Next Meeting: Wednesday, December 4, 2019 at 6:45 at the Maplesoft Centre, 1500 Alta Vista Dr., Ottawa.

Erin Mutterbach, Myeloma Nurse Practitioner, and Christine Veal, Registered Nurse, Ottawa General Hospital (OGH), will update us on their role working with myeloma patients and clinicians at the OGH and how with their support patients can effectively navigate the system to facilitate their treatment.

Volunteer anyone?

STEERING COMMITTEE VOLUNTEERS NEEDED!

We are also planning a meeting of the Steering Committee for the Ottawa-Gatineau Community Network for 5:45 PM on Wednesday Dec 4th just before our monthly meeting.

We need your help and support.

We are looking for patients and caregivers to help with an education program including working on materials for newly diagnosed patients; social media outreach;  monthly meeting organization and in particular provision of snacks; the annual Ottawa-Gatineau Walk; local advocacy; a mentoring program and with any other ideas you may have that you feel would be helpful for our patients and caregivers in the region.

Come and join us. Share your enthusiasm and skills. Many hands make the work lighter…and perhaps most importantly…it’s fun!

If you can’t make the meeting on Dec 4th, and would like to help please contact Jean Shepherd or Robin Sully. They will be thrilled to have you join the Steering Committee.