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Important: Please help

Important: Please help

Posted by Lacey_adminCCS on Mar 1, 2019 12:12 pm

Hello Everyone!

We would so appreciate your recommendations on programs and services in your community that you may have used to support your experience with cancer. We are currently updating our Community Service Locator with this information so that others with cancer can find out about them, and get the support they need. 

The type of organizations or programs we wish to include is wide ranging – exercise programs, wigs, support groups, meditation or yoga, home care, transportation and accommodation, smoking cessation programs, nutrition, and more.  If you used something you found particularly helpful, and would recommend it to others, please respond with its name and location, and a sentence or two of what it was about.  We will follow up with the organization to get more information.


This is a wonderful opportunity for us to learn from you, and for you to share information with other community members!

Thank you for your wisdom,
Lacey 

 

Re: Important: Please help

Posted by mallan on Mar 1, 2019 12:35 pm

Yesterday I saw a presentation on the Look Good Feel Better program here in Prince George.
Remarkable what they can do for women.

Personally I'd love to see something done for men but for some reason that seems to be a challenge.

I had used the SaveYourSkin society back when I was diagnose with Melanoma Stage 4. They were nothing short of remarkable and helped open all kinds of doors for me when I was sick. Thankfully, I am still here and mostly due to what they did for me in advocating. www.saveyourskin.ca

They recently started a new group called Oculmel Canada to support ocular melanoma patients in Canada

 

Re: Important: Please help

Posted by Kims1961 on Mar 1, 2019 12:58 pm

Lacey_adminCCS‍   This is a great discussion point!

I live in a rural community with no cancer services locally,  so the Community Services Locator is helpful in finding what might be available in neighbouring communities.  The other advantage to this tool is that some services are ONLINE!  Yahoo...so that is really helpful to those of us in remote areas.

Thank you to all who contribute info. to it....so very very helpful for all of us!

Kim

 

Re: Important: Please help

Posted by ashcon on Mar 1, 2019 1:21 pm

Love the idea, mallan‍  of having something like Look Good Feel Better for men. When I went to the LGFB session at my local cancer care centre, yes, the help with make-up and head-coverings was great, but I got more value from learning proper skin treatment while going through chemo. 

Kims1961‍ - You are so right about the online aspect of services.  There is a LOT out there. I think we are very lucky to live in a country that has so many services available to cancer patients and their families.  And many of them are free or at a reasonable cost.

Good news - all the services (except one) that I used during my treatment were identified in the Community Services Locator, so I'm very glad to see that.

Here are some possible additions:
1. Swelling Solutions Lymphedema Management Centre.  They offer services to manage and treat lymphedema.
665 Belmont Ave W, Kitchener Ontario.  Website:  https://www.lymphkr.com/

2. Health Source Integrative Medical Care.  They use integrative cancer therapies to support conventional cancer treatments. 
227 Dumfries Avenue Kitchener, Ontario.  Website: https://healthsourceimc.com/

Hope this helps!

Re: Important: Please help

Posted by LPPK on Mar 1, 2019 2:37 pm

Locally there are no cancer related services  near where I live and found that the winter drive into either Ottawa or Kingston (both over one hour away) difficult.
I found some alternative services that helped me.
     https://www.ahimsanaturopathic.com/yoga   Ahisma Naturopathic  223 Main St W, Merrickville, ON K0G 1N0, 613 269-4472
          The Gentle Stretch and Strengthen Yoga Classes help to reduce stress, strengthen the body, offer companionship and get you out of the house.
          An upcoming workshop Conscious Nourishment, a four week program with simple healing practices, whole foods, and inspired discussions, is offered in April  2019 
              This would be helpful to anyone trying to healthy up their diet, and try new ways to make yourself feel better.
   
        http://anosteopathicapproach.ca/wp/    An Osteopathic Approach,  Cheryl Christian, 12918 County Road 15, Merrickville, Ontario.  613-269-2069
              I found this most helpful to reduce pain in my back and hips. 

Re: Important: Please help

Posted by Elsie13 on Mar 2, 2019 3:27 pm

Monthly meetings in Montreal to help people with lymphedema: http://en.infolympho.ca/lymphedema-information/for-patients/patient-education-support-meetings/  

On-line brochures for people with lymphedema.  http://en.infolympho.ca/resources/laq-brochures-publications/

Lakeshore General Hospital in Montreal has Look Good Feel Better, and I got a free wig from them. 

The new MUHC hospital, Cedars Cancer Centre, Victoria Hospital,  (Glen Site), also gave me a free wig. There's a small library, room with cancer related brochures etc,. and you ask in there about wigs.   http://www.cansupport.ca/support-services/      and activities calendar: http://www.cansupport.ca/wp-content/uploads/2019/01/CCS_Calendar_WINTER_2019_Outpatient_English.pdf

Re: Important: Please help

Posted by WesT on Mar 3, 2019 10:26 am

I noticed that St. Joseph's Hospital in Toronto does not come up and any search I have initiated.  Then again their website is actually pretty vague when it comes to cancer topics so I guess I am not surprised.....  They do deal with various cancer treatments though....

Re: Important: Please help

Posted by prairiemom on Mar 4, 2019 12:46 pm

Hi mallan‍  - your point about wanting more things available for men is a very valid one, what sort of things would you like to have more ready access to, as I'm sure you are not alone here. I hope you are doing well. 

Steff (prairiemom)

Re: Important: Please help

Posted by mycrazyjourney on Mar 4, 2019 12:53 pm

Our local program at Wellsprings offers free of charge, classes for cancer patients and their families. I joined Yoga which I start tomorrow all for no cost. What a great centre that is located inside our downtown YMCA London, Ontario. They offer counseling, art classes, yoga, aqua fit ect....  wonderful place

Re: Important: Please help

Posted by Elizabeth06 on Mar 4, 2019 12:53 pm

Hi Lacey_adminCCS‍ 
There is a support group for individuals with metastatic breast cancer that meets the second Thursday of each month in Ottawa.
the address is Churchill seniors recreation Center , 345 Richmond Rd, Ottawa.  We meet @1:00- 3:30.
contact can be made thru breastcancerottawa@gmail.com.

Re: Important: Please help

Posted by prairiemom on Mar 4, 2019 1:22 pm

Hey Lacey,

great question! 

A couple that spring to mind for me are the following - 

1. Awesome Breastforms - a program similar to Knitted Knockers, they supply free custom knitted breastforms to breast cancer patients. In addition to the website where you can order your forms, they have a facebook group too for tips and advice. http://awesomebreastforms.org/

2. - this next one is part of the Wellspring Edmonton Program, but i think it would be beneficial to have it's own slot. I'm not sure if there are equivalent programs nationwide, but it's a great resource for Alberta cancer patients / survivors. 

https://wellspring.ca/edmonton/programs/all-programs/alberta-exercise-program/
to quote the website "The primary goal of ACE is to assist individuals who are currently receiving cancer treatment, or who have completed treatment within the last three years, adopt an active lifestyle." - open to both men and women, the people that run it are awesome. I did start the program, but had to stop after i ended up in a walking boot for a few weeks, which made it impossible to continue. 

3. The medical supply shop in Stony Plain has the loveliest lady who has been trained in fitting prostheses and mastectomy bras, she is super compassionate and really lovely to work with. I think the business may have changed hands, so I will find out the details and send them to you. 

Steff
 

Re: Important: Please help

Posted by princessmaura on Mar 4, 2019 2:24 pm

I found the cancer librarians at the cancer agency very helpful with my questions and recommending books to read on my type of cancer...

Re: Important: Please help

Posted by mallan on Mar 4, 2019 2:25 pm

prairiemom:
Hi mallan‍  - your point about wanting more things available for men is a very valid one, what sort of things would you like to have more ready access to, as I'm sure you are not alone here. I hope you are doing well. 

Steff (prairiemom)

I'd really like to see more groups associated with sharing. I have attended a Grief and Grub program for men that was put on by the local hospice house. Fantastic program and it gets the men out!! They supply a great meal at every meeting plus moderate and keep the chat flowing.
While going through treatment, I kept in touch with CCS and always made sure my name was on every opportunity for sharing groups. I would get the odd call back that there was going to be a sharing group, but inevitably they all got cancelled due to poor attendance. Guess I was the only one wanting the go to a support group.
One question always came to my mind as the groups got cancelled was I couldn't believe I was the only person requesting a support group, but was it that there was no one available to run the groups?

I'd really like to see more effort from agencies to actually have groups running on a regular basis.

 

 

Re: Important: Please help

Posted by ACH2015 on Mar 4, 2019 5:19 pm

mallan‍‍ , prairiemom

Your concerns and comments are important, but its getting this important topic off topic. Perhaps its best to post those valid concerns and comments in a new thread.

This thread is intended to share information about services you've used in your area to improve the
Community Services Locator on the site.

No need to reply.

Thanks

ACH2015 - Andy.

Lacey_adminCCS
:
Hello Everyone!


We would so appreciate your recommendations on programs and services in your community that you may have used to support your experience with cancer. We are currently updating our Community Service Locator with this information so that others with cancer can find out about them, and get the support they need. 

The type of organizations or programs we wish to include is wide ranging – exercise programs, wigs, support groups, meditation or yoga, home care, transportation and accommodation, smoking cessation programs, nutrition, and more.  If you used something you found particularly helpful, and would recommend it to others, please respond with its name and location, and a sentence or two of what it was about.  We will follow up with the organization to get more information.


This is a wonderful opportunity for us to learn from you, and for you to share information with other community members!

Thank you for your wisdom,
Lacey 

 

Re: Important: Please help

Posted by prairiemom on Mar 4, 2019 7:01 pm

ACH2015‍  sorry for making it off-topic - my hope / intention was that if Mallon mentioned anything that was actually offered in his region, but he didn;t know about it, someone would be able to point him in the right direction, and it could get added to the csl at the same time. I wasn't trying to derail anything, and did actually offer services that I knew about in another comment.  

Re: Important: Please help

Posted by Jlo on Mar 5, 2019 3:17 am

Hi Lacey:

I was treated at the Surrey Cancer Centre, Surrey, B.C. in 2017  and used the following services;
Look Good, Feel Better progranm.  The volunteers were great and very helpful.  I received so many non toxic skin care products which was very helpfu and I was very appreciated of this.
Relaxation and Meditation Program:  This was a 4 week class and was both relaxing and helpful.  My spouse was able to attend as well.
counselling:  I had 1 session of counselling.  Through the counsellling program, I found other resources.  They did have a wig exchange and also gave out hats and slippers.  The counsellor was very supportive and she also led our meditation class.  
Library.  The Surrey librarian loaned me some good books and then I was able to access  more on line through the cancer resources.  .

nutrician services..  I talked with a dietician which I think was tied into our MSP plan here in B.C.  She gave me lots of good tips for my diet  Excellent resource.

Www.inspire.health.ca.  they have an on-line meditation  class which I continue to use.  Inspire Health offer many classes but it is an hour's drive from my home, so have not used their resources, but I heard they are excellent.  Located in Vancoouver, B.C.  

Cancer Chat was an on line class for 6 weeks.  The counsellors were excellent.  1 844 725 2476.  Cancerchat.desouzainstitute.com.  There was not a support group in my area, so I opted to do this instead.  They offer several good classes and the strategies they taught us were excellent.

I hope this is helpful
joan

Re: Important: Please help

Posted by Raleigh on Mar 5, 2019 6:16 am

Bridgewater' South Shore Regional Hospital offers the Look Good Feel Good program.  There is also a nutritionist available to assist any cancer patient.  I have also been in touch with our palliative care group for support and information.  There is also a Journey Room with an assortment of wigs and head covers.  They also have volunteers who come in for massage, reiki, hair cutting, etc.    Where I am having my treatments in Halifax I am just now tapping into what is offered locally.

 I have brought to the attention of the cancer navigator to look at bringing to our facility the ACCESS program being offered in the Dixon Center in Halifax and in Truro.  This is an exercise program to help cancer patients to get their strength back under the supervision of a ttrained facilitator.  I do believe it is a 12 week program.  Great for the winter months when you can't get outdoors.  

Re: Important: Please help

Posted by Radix on Mar 5, 2019 8:32 am

In Gatineau Quebec there is the Centre Carmen
http://centrecarmen.ca/ 
 

Re: Important: Please help

Posted by myworstnightmare on Mar 7, 2019 6:02 am

I wish I knew of any programs but I am just living my life trying to pick up the pieces of recovery. I feel that the best support comes from within you if you have faith, family and friends. 
A wise man told me once - in the end, we all die, so each day you are miserable and worried about the future, or keep rehashing the past in your head, it is one less day to be happy and grateful that you are here now and able to enjoy the little things in life - a laugh of a child, the smell of a flower, the sunshine, friendships, love of a dear one. Etc.........

i get up each morning and and I say - thank you for bringing my soul back, thank you for giving me clothes to wear so that I am not cold, eyes to see, heart to feel, limbs to move, my children, my grandkids, my love and everything else you gave me, thank you......

and thats at show I live......

sorry i I couldn’t be of more help:(

 

Re: Important: Please help

Posted by sundog on Mar 7, 2019 1:26 pm

Here are some resources from my London Regional Cancer Program (Ontario):

Wellspring London Cancer Support Centre, 382 Waterloo St., London, ON, N6B 2N8 519-438-7379
Includes: Meditation, Reiki, Therapeutic Touch, Qi Gong, Sonic Drumming, T'ai Chi, Yoga, Art Therapy, Aquafit, Support Groups, Look Good Feel Better

Resources at London Regional Cancer Program (for patients):
Patient & Family Resource Centre (library)
Soul Medicine (spirit support group)
Look Good Feel Better (hair and cosmetic workshop)
Wig and Turban Service (free of charge)
Financial assistance through LRCP Patient Assistance Program
dietician
social worker

Community Care Access Centre (also LHIN - Local Health Integration Network):
Recommendation through LRCP. I am getting home nursing, social worker, dietician.
Also offered: medical supplies, personal support, physiotherapy. 
Each county in Ontario has a separate LHIN. My contact number for London-Middlesex is 519-473-2222.

accommodation (London)
Resident Inn by Marriott 519-433-7222
Free overnight accommodation during treatment. Need letter from doctor. 

Parking passes:
7 day, 14 day, 30 day - available from parking attendant at LRCP. Saves a LOT of money!

Transportation:
Wheels of Hope

Hope that helps. 
 

Re: Important: Please help

Posted by ChristineP on Mar 7, 2019 10:25 pm

This request couldn’t have come at a better time!  Myself and 3 other amazing warrior women are co-founders of a new non-profit organization called “Sunflower Warriors” .  Our mission is to support other women diagnosed with breast cancer by providing mentorship, networking opportunities, discussion groups, in person events and inspiration as they navigate through their journey.  We are located in the Simcoe County region and in addition to our online presence we will be organizing in person events at different venues in the Barrie and surrounding area.  

Please connect with us to find out more information,  see our story and join our community.    Fb / instagram  @sunflowerwarriors and our new website www.sunflowerwarriors.ca

“We understand because we’ve been there”

 

Re: Important: Please help

Posted by cancertakesflight on Mar 7, 2019 11:37 pm

This is a very useful topic. I had my surgery in Toronto but I don't actually live there so the list of resources they gave me would have required more driving than if I just used a resource closer to where I live. I used HopeSpring in Kitchener. They used to be in Waterloo and I went down at lunch to pick out wigs and get a camisole that had the drain holders. You can find more details at  https://www.hopespring.ca/.

princessmaura‍ can you tell me what cancer agency you used. I would like to contact the librarians you used to point you in the right direction about books.

cancertakesflight (Debbie)

Re: Important: Please help

Posted by princessmaura on Mar 8, 2019 1:34 am

cancertakesflight‍, I used the Vancouver cancer agency library...it's in the cancer research building across the street from the building where cancer patients get chemo and radiation...the librarians there are always eager to be of assistance...

Re: Important: Please help

Posted by MrsBH on Mar 8, 2019 9:20 am

I live in North Bay and dont know of any kind of resources other than what I'm told us at the cancer center in my area.  However I have not checked your website since I was first diagnosed and everything was a blur so I will check again.

Another poster mentioned Look Good Feel Good.  It's unfortunately not hosted hers but I was lucky enough to take part in Sudbury at the Daffodil Terrace Lodge. I took part when I was going through my first treatment.  It was such a feel good great time to share with others facing cancer.  Plus the bag of makeup and skin products was great!

Maybe have posts about accommodations etc in cities where we have cancer centers.  

Another thing that really helped me is a closed Facebook group.  I joined a colorectal cancer group and it really helps to interact with others going through similar treatments.

I'm off to check the community services locator to see what I can find!

Re: Important: Please help

Posted by Razma on Mar 8, 2019 7:50 pm

Hi everybody,
Just wanted to provide a link for a drug assistance program for Neulasta among others. Whatever your co-pay is, they will usually help with the balance of these very costly drugs regardless of income level; https://www.amgen.ca/products/patient-assistance/
Other than that, there are Bien Dans Sa Peau (Look Good Feel Better ) meetings once a month at Charles Lemoyne Hospital, Greenfield Park, Quebec,  but this information is readily available on their website. 
I am still seeking out other resources, mostly using YouTube for Yoga programs from beginner to advanced and also rebound therapies using mini-trampoline to promote lymphatic activity.
I hope this helps someone.

Best Regards,

Stephani

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