Books, Websites and Resources

It is easy to get caught up in information overload... a reminder to review the source and look for reputable sites and programs.

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.
 
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Comments

  • @Flowergirl I can't seem to find a way to order By Your Side on the OCC website do you have a link?
  • @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!
  • 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

  • Done and ordered thank you!!
  • 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.
  • JackieJackie
    edited October 2017

    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.

  • 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.  
  • 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/
  • thank you @Jackie - that book is on my to read list
    thank you @CurlyHair - great reminder on where to look for the trial information 
  • 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.
  • 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?
  • Yep I did. Perhaps just a glitch.
  • Got the electronic version and they're resenting the hard copy thank you for looking into it Marilyn 🙂
  • @terrylee.  Great!  So glad you said something so we could follow up and make sure you received it.  Hope you find it helpful!  
  • 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-series
  • 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?
  • great resource - thanks 
    we sometimes use doodle.com 
  • @Marilyn I ordered the By Your Side guide as well in September but have yet to receive it...Placed the order through the website. Would love to have the resource if possible! Thank you!
  • 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. 

  • 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!
  • Thanks @Jackie for sharing this website.  I was not familiar with it either.... :)
  • @amym85.  The By Your Side was shipped today!  Please let me know when you receive it.  Sorry for the delay!
  • 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/ 
  • 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 
    I really enjoyed the art therapy session and the session on recurrence provided helpful support as well. These sessions are during day hours, it is all on remote via internet/chat/webinar and is hosted by designated professionals. 
  • 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. 
  • JackieJackie
    edited January 6

    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.”

  • 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.
  • Thanks - I'll check that site as well! :)
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