OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Books, Websites and Resources
Do you have your copy of By Your Side or Still By Your Side? You can order one here from the website. It is helpful when you need to review medical details in the glossary, information on Ovarian Cancer, a list of books and organizations that can help.
Comments
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@Flowergirl I can't seem to find a way to order By Your Side on the OCC website do you have a link?0
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@terrylee Here is the link to the website to order By Your Side. http://ovariancanada.org/living-with-ovarian-cancer/support-resources
@Flowergirl thanks for posting this discussion and talking about By Your Side and Still By Your Side!1 -
Another good resource for those wanting some information on genetics is http://www.hbocsociety.org/
and http://riskygenes.org/
There is also The Screen Project: A Canada wide BRCA study for men and women.... http://thescreenproject.ca/?gclid=CjwKCAjwxo3OBRBpEiwAS7X62USqaYjDrvQUxQmGWtudlXxEJT_-Dbr5WW_3z23bM4sYIiQtVnVxrRoC_0YQAvD_BwE
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Done and ordered thank you!!0
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Another excellent resource is Cancer Chat by the de Souza Institute. There is an upcoming online Ovarian Cancer support session check it out here: https://cancerchat.desouzainstitute.com/about
You can also view their calendar and make contact to get on the email list to find out when new sessions start.0 -
If you’re looking for a book that deals with the psychological and emotional aspects of cancer, I highly recommend reading Paul Kalanithi’s bestseller, When Breath Becomes Air. At the age of 36, on the verge of completing a decade’s training as a neurosurgeon, Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. The young doctor’s autobiographical account, published after his death, is both poignant and well-written.
If you haven’t watched it, I suggest Cancer: The Emperor of All Maladies based on the Pulitzer prize winning book by Dr. Siddhartha Mukherjee. This documentary was on PBS last year and is one of the best shows I’ve ever seen on the subject of cancer. I love how Mukherjee and producer Ken Burns skillfully interweave the scientific, historical and political aspects of the disease.
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I wanted to provide another source of information for clinical trials for everyone that may be researching them. The website is http://www.canadiancancertrials.ca/ This site lists all the clinical trials in Canada for all types of cancers. They can be searched by province and town as well.1
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For those looking for some nutrition guidance - I found this book very helpful:THE ESSENTIAL CANCER TREATMENT NUTRITION GUIDE AND COOKBOOK:...
By Jean Lamantia and Neil Berinstein
https://www.chapters.indigo.ca/en-ca/books/the-essential-cancer-treatment-nutrition/9780778802983-item.html?mkwid=s_dc&pcrid=197537908517&pkw&pmt=b&s_campaign=goo-DSA+Books+Best+Sellers&gclid=Cj0KEQjw09zOBRCq8_7Xr7OG57QBEiQAfxcXVmbYrPudz8ttZPs6fMf25uWVzsReM9cjCw48ArxD7xMaAi8f8P8HAQ2 -
Often, returning to work may be unthinkable - the last issue on your mind - (was for me).. If you find yourself at the crossroads and have the opportunity to go back or are well enough to go to work, this helpful site offers a lot of information and assistance. It is for Survivors, Health Care Providers and Employers https://www.cancerandwork.ca/
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thank you @Jackie - that book is on my to read list
thank you @CurlyHair - great reminder on where to look for the trial information0 -
This was a helpful resource to survivor groups.... https://www.chapters.indigo.ca/en-ca/books/picking-up-the-pieces-moving/9780813540368-item.html
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How long does it normally take to receive By Your Side? I sent the request on Sept 21st and haven the received a physical or electronic copy yet. Got the confirmation email straight away and everything but nothing since.
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Hi @terrylee. You should have received the electronic version very quickly and the hard copy within a couple of weeks. I will definitely check into this and see what happened. I do apologize! I assume that you ordered it through the website?0
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Yep I did. Perhaps just a glitch.0
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Got the electronic version and they're resenting the hard copy thank you for looking into it Marilyn 🙂0
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@terrylee. Great! So glad you said something so we could follow up and make sure you received it. Hope you find it helpful!0
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If you missed any of the webinars, you can listen to the previous ones recorded here:
http://ovariancanada.org/events-support/go-online-for-support/webinar-series0 -
Hi
In the discussion about "How can family and friends help", someone asked if there were any online resources to help plan and organize practical help and support. There are 2 websites that I know of that have an online scheduling component to them as well as a mass communication vehicle that you can use to keep multiple people updated about your situation. This can be particularly helpful during a time of surgery and/or treatment. Here they are:
caringbridge.org
lotsahelpinghands.com
My family actually used caringbridge.org during the illness and recovery of a family member and it worked really well. We did not use the scheduling component.
Do you know of any other resources like this to add to the list?1 -
great resource - thanks
we sometimes use doodle.com0 -
Has anyone used the Live Better with Cancer website? You can check it out at https://livebetterwith.com. I wasn’t really aware of the organization until one of their staff members contacted me, she had stumbled across my personal blog. The company is based in the United Kingdom, but it’s international in scope. Live Better seems to have an extremely wide selection of products to help cancer patients during treatment and recovery. The site also offers lots of practical advice in the form of blogs by people living with various types of cancer.
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Hi @amym85. Yes, I will follow up and make sure another one is sent right away. Sorry about that! I hope you find it helpful!0
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Thanks @Jackie for sharing this website. I was not familiar with it either....
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@amym85. The By Your Side was shipped today! Please let me know when you receive it. Sorry for the delay!0
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I've also spent some time looking around on this site:
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
I found some really good comments and suggestions for the person impacted, for their families or supporters.. also noticed there is an upcoming KidsGrief Q&A Webinar on January 18 @ 1:00 PM ET - visit http://kidsgrief.ca/0 -
Hello everyone - great news - the Cancer Chat online support group has new sessions starting.
Go here to create a log in and user name - you can sign up to get alerts.
https://cancerchat.desouzainstitute.com/login- Expressive art group starts Wednesday, January 24th (no experience necessary)
- Fear of Recurrence starts Tuesday, January 23rd
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Hi @Jackie - I just read this article
http://ew.com/books/2018/01/03/spouses-late-memoirists-fall-in-love/
Wow - very interesting ... going to try and read these books over the rest of the winter.
oh, and I so could relate to the purchase of the couch!- follow those links in the article to read more if you like.
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Hi @Flowergirl thank you for posting this incredibly interesting link. I’ve read When Breath Becomes Air and intend to read The Bright Hour in the near future. It definitely shocked me to learn that Paul Kalanithi’s widow is currently in a relationship with the widower of the author Nina Riggs. I was completely unaware of their romance until now. I like what Lucy Kalanithi says about their relationship. “I’m surprised by how ridiculous it is and how natural it is at the same time.”
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I have found lots of good info on the Hystersisters website. For info about the surgery part of it at least.
And I am in a good facebook group though most of the women are American, but they are from all over the world too.0 -
Thanks - I'll check that site as well! 0
