A blog of Useful Resources for Women with Ovarian Cancer

[Whippit]

Just over two years in to this journey I've been reviewing the sources of support I have and I've started a list thinking it might be a helpful resource to others. With so many organisations working to help us we can find ourselves in an information maze.

In some cases it's necessary to register as a member to access resources. It's worth considering which organisations you've joined and whether the contact details held by these organisations are up-to-date. If you've changed your address, mobile or email address it's worth letting them know so they can remain in touch. Here are a few. I hope others will add to this blog of useful resources.

Ovacome

ovacome.org.uk/

This is the charity that moderates this Health Unlocked site which I consider to be my biggest source of support from women who are living with Ovarian Cancer.

There's a great nurse-led support services available 5 days a week: 0845 371 0554 or email: [e-mail]

There's a basic list of clinical trials in the Section 'About Ovarian Cancer'

At the bottom of the home page you can join Ovacome to receive newsletters via email or post and you will be able to attend Members' Day

Target Ovarian Cancer

targetovariancancer.org.uk

This charity is prominent in all the regions of the UK with its Regional Get-Together Days.

The charity has been particularly active in a quest to achieve parity of treatment/awareness-raising in the devolved administrations. A new officer has recently been appointed in Manchester

There's an excellent Clinical Trials list giving eligibility criteria which you can search by postcode but it's difficult to find. I always use the Site Map at the bottom of the Home Page. Clinical Trials are listed under 'I have Ovarian Cancer', 'I've just been diagnosed'.

You need to Register with this charity to receive their online or paper newsletter. To do this click on 'Contact Us' at the top of the site and you can register your details here.

Ovarian Action

ovarian.org.uk/

This charity has similar aims as the previous two but it also boasts a Research Centre at the Hammersmith Hospital in London and you can arrange a tour of their facilities with a lecture by Professor Hani Gabra. To do this contact Abi Ajose-Adeogun at [e-mail] to find out when these are available.

To sign up click on the beige box at the top of the home screen, 'Sign Up'

On Facebook there's an active group called Ovarian Cancer UK and another called The Ovarian Cancer Network (OvCa.net)

Memorial Sloan-Kettering Cancer Centre

mskcc.org/cancer-care/integ...

This is a helpful site which lists Herbs, Botanicals and other products by A - Z, etc. and will give you the low-down on their properties, uses, side-effects, etc. It's great if you hear of a new supplement for cancer and want to check it out. It's a world-leading centre of integrated medicine based on research.

Macmillan

Probably the best-known of all the cancer charities.

WebMD (in collaboration with Boots the Chemist in the UK)

webmd.boots.com/ovarian-can...

Another helpful resource for symptoms, disease progression, news, etc.

Ovations

ovationsforthecure.org/whis...

A site of blogs and information for women with ovarian cancer and their supporters.

I hope others can add to this list so we can share the services and support we've found most helpful. Please add other useful links and aspects of support services you have found particulalry beneficial. It would be such a helpful resource.

[Hidden]

Try this one

patient.co.uk/health/ovaria...

Rgds Paul

[Hidden]

That's great Annie Well donexxx

[Henry2012]

Thanks really usefull will book mark this. X

[Whippit]

I've just met Lynn and she reminded me of the Ovarian Cancer Network in the US. Inspire

inspire.com/groups/ovarian-...

[Hidden]

May be useful

cancer.gov/clinicaltrials/r...

[Hidden]

Another

nhs.uk/Conditions/Cancer-of...

[Hidden]

Really useful...

Can I suggest starting to tag posts like these to make them findable - perhaps something as simple as 'lists'...?

Love

Sue xxx

[Whippit in reply to Hidden]

thanks Sue. Have added more tags. One being 'duplication'. x

[dawnieg]

Thank you so much for this, I will find it very useful as I am newly diagnosed and confused! xxx

[Whippit in reply to dawnieg]

Dear Dawn

I'd read your profile a little while back and have been wondering how you are. I've just noticed you've started chemotherapy. It's a horrible shock and then going for chemotherapy the first time seemed to me anyway to be very unreal as though it was happening to someone else. I think that shock helped me deal with everything as it is confusing at first.

I hope your treatment is going well and not too many side-effects. If you do you can go back to your hospital and they might be able to change the medication to keep you more comfortable.

If you're not sure about something post a question on this site and you'll get loads of helpful replies. It is confusing at first though and you can read too much on the internet and scare yourself silly with facts and stats that are years out of date.

love Annie xxx

[citrine]

Many thanks for this Annie. Very useful indeed.

Love Mary xx

[drdu]

I would add cancerresearchuk.org

Eileen xx

[Whippit in reply to drdu]

Yes, this is a really useful site. The list of trials was good too. x A

[ginger69]

Annie, thank you for the useful information.

The first site that I joined was 'Inspire' in America, which I have received a wealth of information with fellow sufferer's abroad, and also the regime of medicine that is available to other country's.

There are so many sites, but some are more user friendly than others.

Janette xx

[Sunfleury-UK]

Dr Peter Harvey was a consultant clinical psychologist specialising in oncology, I came across this series of short essays recently and have found it has struck a number of chords with me. I hope it may be of some use to both those who have a cancer diagnosis and also for those who care about them: a possible insight into what may be felt and experienced....

cancercounselling.org.uk/no...

Best wishes Sx

Ps this is duplication of a closed blog post which has been commented on previously!

[Sunfleury-UK]

In addition to their website, I have recently been given a copy of Target's 'What happens next' booklet and have found it to be very comprehensive. I would have found it useful after surgery and before / during chemotherapy as it really focuses on a woman's experience and feelings during the process. I think you can send for a copy if your CNS does not provide one and I would highly recommend it.

Prior to surgery, I found Ovacome's fact sheets really useful, succinct and accessible- I downloaded them and also forwarded to those closest to me when asked for explanations but think you can request hard copies via the website.

[Whippit in reply to Sunfleury-UK]

Dear Sue, I agree that Target's 'What happens next' booklet is really helpful. There are three in the series. Target would be happy to send you a few samples along with their contact details so you can tell your CNS nurse how helpful they were for you. She could then order some for other women. They're free-of-charge.

I didn't discover Ovacome's website for ages and I came straight here. I agree their site is also very helpful.

xx Annie