Welcome and update from Ovacome

Welcome and update from Ovacome

Hello all

As there have been quite a few new members to the forum in recent weeks we thought we would take this opportunity to welcome them to the forum and to update you on a few things.

So firstly, welcome to our new members! We hope you find the forum a safe and supportive space to discuss things. if you have any queries about the forum do message us. Please take a moment to read the pinned posts on the right hand side of the page which includes our guidelines for use of the forum.

The My Ovacome forum is run by Ovacome ovarian cancer charity. We are a UK-based charity and we have been supporting people affected by ovarian cancer for 21 years. Our support service is available Monday-Friday 10am-5pm for any questions or concerns you may have. The support line number is 0800 008 7054 or email support@ovacome.org.uk. If Anna, our Support Service Manager, isn't available please leave a message and she will come back to you.

If you are a member of the forum but not a member of Ovacome charity and would like to be, it is free and you will receive a membership pack, our newsletter 3 times a year and an invite to our Member's Day which includes latest clinical updates, as well as an opportunity to meet other members. You can become a member by filling out the form on our website at the following link: ovacome.org.uk/support/spea...

From the picture you'll see our latest newsletter is out now and for those of you on the mailing list you should be receiving it soon, if you haven't already. (We are unable to send paper newsletters to overseas members but please let us know if you would like to be on our e-zine emailing list). It is also available as a PDF on our website at the following link (along with back copies of previous newsletters): ovacome.org.uk/news/ovacome...

Finally, just to let you know that our Christmas cards are now on sale and can be ordered from our website at the following link: ovacomeshop.org.uk/ovacomeshop

Thank you to all our forum members who help make My Ovacome such a valued space for anyone affected by ovarian cancer.

Best wishes

The Ovacome Team

11 Replies

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  • Could I just add here for the benefit of new members that, when writing a post, selecting at the end of your post that it can be seen by 'only followers in my community' makes it more private. If you click the 'everyone' option it can be seen by anyone on any of the forums on Health Unlocked and can also be found by internet search engines. If you are happy with this more public option, that's fine, but it's worth drawing attention to this point.

  • Hi Harpist, this is a excellent tip I was told about this when I first joined. Thank you for posting take care Cindyxx

  • Another tip: if you're replying to a post, check how long ago it was written - top right in the message box. Unfortunately there seems no way of identifying writers who are no longer with us and it can be upsetting to be reminded of this.

    You can also click on the writer's profile to see if they are still active on here, as it shows posts and replies.

  • Hope you don't mind, Mac, if I just add - click on the round head outline on the left of the post, first, to quickly get to a person's profile. Being pretty ignorant, finding my way round on the laptop it took me a while to suss the site out.😔

    Hope you're doing well, love Solange 😊

  • Good point - much better to spell it out...

    Which reminds me of another tip which it took me a while to tumble to:

    If you use the search box - top right of the page- you will not get the results of your search request unless you press the enter key.

    Can't complain, Solange... into my fourth week of Niraparib and feeling very well, with minimal and fleeting side-effects and I have a long holiday planned!

    I hope you're doing okay too.

    Chris xxxxx

  • Another good tip, Chris. ( Not Mac - my memory is hopeless. Knew you had another name but just couldn't remember it)

    Do hope the Niraparib helps. Glad the side affects aren't too bad. I was very disappointed not to be allowed it as no shrinkage had been achieved but even if it had, my Onco said my blood is in too bad a state to have it, or more Chemo yet. Good news, though, my CSN today emailed that I'll only be considered Platinum Resistant if things grow within the next six months. Keeping my fingers crossed.🤞

    Great that you are planning a long holiday. Where will you be going? Solange 😊Xx

  • I spoke too soon: it's being suspended pending probable dose reduction as my platelets have dropped a lot. This is quite common, I think.

    Going along for the ride on partner's work trip to Australia, with some time in Singapore and Bangkok..... I can't wait....35 years since my last Oz trip! But no camping!

    Take care xx

  • Sorry about Niraparib suspension. Hope you can continue with lowered dose. It seems that a good few are having probs with it. Still, many others are finding they're fine on it. Let's hope your bloods quickly improve.

    Have a fantastic time away. Exciting, all that time and no tenting. ⛺️ Have a great time - you deserve it!! Solange 😊Xx

  • My only tip would be to write a clear subject heading for your post. Whilst you may be seeking help & support 'Advice please...' is pretty general. We are a lovely bunch but can't always respond to everything. I always find if it's specific to something that helps when looking at a large number of posts. For example 'Advice for recurrence' or 'Advice for hospital stay' etc. Or maybe you just need supporting as having a bad day, if so just shout...one of us will respond I'm sure.

    Sorry you have to even be on the site, but know we're all in this together ❤️😘❤️

  • These are great suggestions & will all really help a huge amount...

    Id also add that it can be really helpful to indicate where you are based/ receiving treatment... As the original post explains, Ovacome is a UK based charity but there are now many members of this forum from all over the world. It's a real strength & opportunity to share different perspectives but mostly it simply reinforces the huge amount we share!!! There are though different healthcare systems etc & some sources of support & resources may be country specific too.... it's often a good way to make additional connections with women nearby!

    A few of us have altered our names by adding a country suffix... others are starting to sign off with a flag etc

    Best wishes

    Sunfleury (UK)

    🇬🇧

  • Hi everyone, when I am addressing someone on here but they haven't left a name or even initial at the end of their post I then take they name at the top but if it's really long I struggle due to being dyslexic. I hope this isn't cheeky but if even a inital is left at the end of the post I then can address the person quickly.

    I would also like to apologise from some of my bad spelling. Also what is very handy is the edit button found next to the LIKE button just click the little v in the box it will come up with edit & delete. I use the edit button all the time.. some of mybspelling is so poor.

    I do like all the tips given they are excellent ideas at getting the best out of this site. Thank you for posting take care Cindyxx

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