How to Use OVdialogue

mfallis

SET UP

Do I need to create an account?

• The posts on OVdialogue are public, so you do not need an account to read discussions. However, to participate and interact with members of OVdialogue you will need to register and sign in with an account.
• Registering also enables you to see the activities and profiles of other members.
• Register here and you will receive an email with a link that you must click to validate your address.

What about privacy?

• Your username is how you will be identified on OVdialogue, publicly and to other members. Protect your identity by selecting an alias as your username.
• For your username, you can use letters, numbers or a combination of both.
• Rest assured that your name, email address and province/territory will be hidden entirely.
• For further details, read our Privacy Policy.

Can I change my username?

• Please choose your username carefully as it can only be changed by contacting a moderator.
• Changing your username will break links in @ mentions tagging your previous username. As a result, members seeking to connect with you based on these tagged posts would be unable to find you as easily.
• If you require assistance, please email OVdialogue@ovariancanada.org or call 1 877 413-7970.

How do I recover my username or password?

• Click “Sign in” and press “Forgot” when you are prompted for your username and password.
• For further assistance, or if you cannot remember the email address attached to your OVdialogue account, please email OVdialogue@ovariancanada.org or call 1 877 413-7970.

How do I change my account information?

• You can make changes to your account profile at any time. Go to the wheel icon above the main menu and click “Edit profile.” From here you will be able to make changes as you wish. Additional details, such as your notification preferences, password and profile photo, can be edited in the sidebar. Mobile users may have to scroll down a bit.

How do I change my profile picture?

Profile pictures are public. If you wish to protect your identity, do not use a photo of yourself.
Go to the wheel icon above the main menu and click “Edit profile.” From here, press “Change my picture,” which will be in the sidebar if you are on a desktop or towards to bottom of the page if you are using a mobile device. Click “Upload new picture” and make your selection. Please note that square photos work best.

How do I complete the “My story” section of my profile?

• The “My story” section of your profile is an opportunity to share a bit about yourself.
• As part of your profile, “My Story” can only be seen by other members.
• Consider including what you would like to say to others living with ovarian cancer.

WRITING

How do I start a new discussion?

• Press “New discussion” on the sidebar menu. You may have to scroll down a bit if you are using a mobile device.
• Make the discussion title as descriptive as possible to let people know what your post is about. This will inspire interest from other members, as well as help search engines find your post and bring more people into the discussion.
• Choose an appropriate category, either one with a relevant category name or one where similar posts are often made.
• Ask for responses if you are looking for them. If you’d like others to comment, invite them to do so. One way to do this is by ending your post with a question.
• You will receive a notification if someone comments on your discussion in accordance with your notification preferences. Be sure to check your preferences to be kept informed of activity.

What should I not post?

This is a forum for you to share your experience, please remember to be respectful to others - both on the site and involved in your care.

• Please remember that OVdialogue is a public community so others will be able to see what you post.
• Do not post names of your health care team. Your experience with your health care team is a personal one.

How do I help others to get the most from my posts?

• Proofread your posts to prevent typos and errors that can get in the way of people understanding your message. This is particularly important when auto-correct is enabled on a mobile device.
• Formatting can make your posts visually interesting. Use the icons in the format bar to assist with layout or to add files and emoticons. But remember, sometimes less is more. Avoid over formatting to keep users focused on your message.

Can I use content from social media?

• Absolutely. To embed a YouTube video, Pinterest pin or Tweet, simply cut and paste a link and OVdialogue will embed it for you.

How can I ensure specific members see my posts?

• You can tag specific members when you see posts that would be of interest.
• In the text field, type @ immediately followed by the username of the member you have in mind. There should be no spaces between @ and the username. A dropbox will appear for you to select the member you wish to mention.
• You can do this for as many members as you wish, typing @ immediately before each username.
• The members you’ve tagged will receive notifications in accordance with the notification preferences they’ve selected.
• The tags will also become clickable to enable other members to see related profiles, and potentially reach out.

How do I send a member a private message?

• Open sharing is encouraged on OVdialogue. However, if there is a private matter, you can send a direct message to one or several members. Moderators can be included, if necessary.
• Above the main menu, click the mailbox icon and select “New message.” From there, start typing usernames in the Recipients field.
• If there is just one member you wish to contact, you can go to their profile page and click “Message.”

Where are my drafts?

• Drafts are automatically saved and can be accessed here.

How do I edit or delete something that has already been posted?

• Once a post is published, OVdialogue only allows 15 minutes for edits. Beyond this time, you must contact a moderator to have something deleted.

WHAT’S WHAT

What is a bookmark?

• Bookmarks are used to mark discussions for future reference.
• If you find a discussion particularly helpful, you can use a bookmark to easily return to the discussion at any time.

How do I use bookmarks?

• To the top right of every discussion title, you will find a star icon. Press the icon to bookmark the discussion.
• Access your bookmarked discussions by clicking on the star icon above the main menu.
• Remove a discussion from your bookmarks by clicking the star icon of a bookmarked discussion.
• If someone comments on one of your bookmarked discussions, you will receive a notification in accordance with the notification preferences you’ve selected.

Moderators & Community Champions

OVdialogue is moderated by a wonderful group of people who have lived experience with ovarian cancer in collaboration with OCC staff. Please remember that these individuals are engaged in these roles to share their experience and connect members to information.

FURTHER INFORMATION

If you have additional questions about OVdialogue, please email OVdialogue@ovariancanada.org or call 1 877 413-7970.

KarenL

Where can I find the My Story section in my profile?

MarilynOCC

Hi Karen.  You should find it just under the box where you enter your last name.

Flowergirl

Thank you for the helpful tips. So pleased this resource is almost ready to launch!

JaneWest

I like the idea of having this thread available from the outset, and can go back to it at any time if i need to check again about how to do something.

UnPickNot

I like the read here first tags - is there any way to move them to the top of the page and "paste" them there?

BrittMK

Just some information regarding formatting pictures, as it came up in discussing among a few of us: One option that works for most boards I've been involved with is to use a site called Tiny Pic (http://tinypic.com/) When you upload your picture there you can actually choose size where it says 'Resize' with a drop down menu. After your picture has uploaded it will provide you with a URL and you can then add the picture, with the size you have selected, using that URL 

MarilynOCC

Thanks for all the comments and suggestions!

kastoyles

Thanks for this wonderful site! I look forward to this being a great place to connect with others who have experienced the same anxieties, treatments and emotions. Together we can help each other get stronger and face the challenges that this disease has thrown into our lives.

kastoyles

Thanks for this wonderful site! I look forward to this being a great place to connect with others who have experienced the same anxieties, treatments and emotions. Together we can help each other get stronger and face the challenges that this disease has thrown into our lives.

meganG

Where and how can I access the profiles and stories of the members.

mjs01

Hi @meganG.  All you have to do is click on their username and you will see their profile.  If you don't see their story it means they have not completed that section.  You could look at the Introduce Yourself discussion and see what they wrote there.

guinsal

Hi, I live in a small town in BC. In March 2016 I was diagnosed with Stage 3C high serous carcinoma. For six months before my diagnosis  I knew something was not right.(Lots of bloating and my whole digestive system was not working well.)Three months before my diagnosis I went to my doctor at Christmastime  with my symptoms and the thought then was that it was a bowel problem as an ultra sound showed nothing but while I was waiting for an appointment for a colonoscopy I started to feel really uncomfortable and ill in mid-February. Went back to the doctor and had an ultrasound which showed fluid (acites) in my abdomen.Within a week I had a CT scan, bloodwork (CA125 was 8,000), saw an oncologist and began treatment with Paclitaxel and Carboplatin. After three rounds (monthly) I had debulking surgery in Vancouver and all reproductive organs removed followed by a slightly different regime back home (weekly for 3 months, same drugs). By the end of August my CA125 count was down to 257 - an unbelievable decrease from 8,000. In late fall I started to feel that my cancer had recurred because I had the same symptoms. The CA125 had gone back up to 3,000+. In the ten days between the recurrence diagnosis and the start of treatment in December it went up another 2,000. I am now on Caelyx and Avastin. I cannot tell you how appreciative I am of the excellent care I get locally at the Oncology Unit, my experienced oncologist, my family doctor, the excellent surgeon in Vancouver, and the BC Cancer Agency, while knowing that all this treatment, including the Avastin, is free. My family and friends have been just amazing and we have just finished celebrating a great  white Christmas.  I am resolutely optimistic and enjoy each day and I do at least one thing for myself and also think of one thing that I can appreciate no matter how small. Wishing you all the best possible outcome for the coming year.

Flowergirl

Hello @guinsal - welcome to the site and thank you for sharing your story. Hope you are feeling well and yes, it really helps to have support and I hope you will find it here as well. Thank you ... I like that new year's wish you mentioned there for all of us...... " the best possible outcome for the coming year".

guinsal

Thank you Flowergirl. I am very fortunate in that I have never been in any pain, mostly just discomfort - bloating and side effects from chemo which, over the five months of treatment, I learned to watch for and manage myself with help from the oncology team.
In BC we can register online to get our lab reports within a day and CT scan results in a week so there is no agonizing wait. In fact it's helpful for the next appointment with my oncologist. I go in with another set of questions and have had time to think about my results. This week I have appointments with my family doctor, my oncologist, the oncology unit for an infusion, and a comprehensive blood and urine test at our local Lab. Sooooo - back in the medical bubble again!

Flowergirl

Hi @guinsal - that sure is a good option to register for your lab reports - hope it will make the way to the other provinces! Wishing you a smooth process for the upcoming appointments.

[Deleted User]

Can you let me know how I unsubscribe and delete my account?  I couldn't find this in account settings.

KGrover

@NighthawkSharon I am checking and will get back to you asap. 

lesley1955

I am new to the site.   I was diagnosed with stage 4 overian cancer 4 years ago after extensive surgery and 3 sets of 6 months of chemo later I still have cancer and my CA 125 # is still very high at #189 but my oncologist feels that its ok to leave it and take the "sit and wait attitude" and to also to move back my appointment back  for another month which will make over 4 months since my last lab work,is this normal, to say I am anxious is an understatement. 

Flowergirl

Hello @lesley1955 - welcome to the site - this is the place to share and find some support. 
Other than anxious, how are you feeling? I'll also private message you. 

MarilynOCC

Hi @lesley1955.  Yes, welcome to OVdialogue.  I can understand why you feel anxious when your CA125 is up and the doctor is saying let's wait and see.  Sometimes waiting is the hardest.  There are lots of discussions that you might find helpful - Anxiety, Motivational Quotes, Teal Tuesdays when you can talk in real time with other women, Resources etc.  I hope you have had a look in the "Just Want to Talk" category where you will find all the discussion topics.  @Flowergirl is a good resource too.  We have a guide called Still By Your Side for women dealing with recurrence.  Have you received a copy?

lesley1955

Hi Marilyn, Thank you, and no I have not received a copy, can you tell me where to go to download a copy.
Thank you
Lesley1955

Flowergirl

Hello @lesley1955
Here is the link for the support resource
http://ovariancanada.org/living-with-ovarian-cancer/support-resources
I hope you find it very helpful 

lesley1955

Hello Flowergirl - Thank you I have already emailed to get a copy.

MarilynOCC

Hi @lesley1955.  Glad that you found the online order form for Still By Your Side.  There is lots of good info in there.  Please let me know if you have any questions.  Thanks for providing the link @Flowergirl !

Flowergirl

If you looking for a specific topic or discussion on this entire forum - try the Search Bar - located at the top right of the page - above the New Discussion tab - it is a fast way to locate specific information and conversations.

jobo

I know how to bookmark and receive notifications about a particular conversation, but is there a way to select an entire category for notification?

KiwiChick

Hi All
Seems that the cooler weather is starting to appear.  At least here in Edmonton AB.  Odd though cause last night it was 23 above until about 10 pm and then it started to rain.  And today it seems it is not going to get much over 15 above.  All the same is is still nice enough to enjoy.

Not sure if this is the right place to ask this question, but if anyone can help that would be appreciated...  See below....

I wanted to ask a quick question.  When I go into some of the conversations, it seems that the oldest date/conversation appears first.  Is there a way to change it so the newest date/conversation appears first.  I don't clam to be computer savvy but I do know my way around and generally there is a tab that you can select, but I am not seeing anything here.  
If anyone can help that would be great.  

Fearless

@KiwiChick @jobo Both great questions and given I'm still learning how to navigate the platform I' m not sure I can be of help. 
  @jobo I did go back into my own profile and notification settings and also couldn't see where you can pick a category to be notified about. That could be an enhancement to suggest to OVdialogue.  
@KiwiChick it's interesting the overall discussion list starts at 1, with 1 being the most current questions, while the discussions I could find that went beyond a single page open up to the most current comments being the last page number to be used (i.e. if there are 9 pages of comments, the initiating comments are on page 1 but the most current at on page 9 which is the page that the discussion opens to when you click on it.)...gosh that sounds confusing!  

Perhaps @Flowergirl, our moderator or @MarilynOCC could answer your questions, so copying them on this comment. I do know we're always looking to make the site more user friendly so suggestions are always welcomed.  

Flowergirl

Hello @KiwiChick - yes, it  depends on how you are accessing the chat or the discussions.
If you do not log in, the default goes to the very first page and you'll need to scroll or page through.
If you do log in, the most current comment or discussion should be at the top, unless there is still room at the bottom of the page to post comments - you may need to scroll down... hope that helps you out.

Flowergirl

oh and it may restart or open up where you left off last on reviewing that topic/dicsussion