If you are supporting someone with ovarian canc... - My Ovacome

My Ovacome

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If you are supporting someone with ovarian cancer - which of the following would you find helpful?

OvacomeSupport profile imageOvacomeSupportPartnerMy Ovacome Team69 Voters
39
Closed Facebook group
39
Day event with talks/activities
19
Face-to-face support group
6
Skype/video call support group
3
Do not want any group support
2
Other (please leave comment)
17 Replies
ingrid48 profile image
ingrid48

Other. It would be nice to have doctors from different nations and scientists giving some updated info maybe answering some questions we have. Maybe one day a week.

ShazD profile image
ShazD in reply to ingrid48

Yes something like the belong.life cancer community app has

ingrid48 profile image
ingrid48 in reply to ShazD

ShazD

Is that an app on iPhone called

belong.life?

Can u let me know?

ShazD profile image
ShazD in reply to ingrid48

Yes you can download it. It is an American site but has specialist groups and has a radiologist and a dr who answer queries

ingrid48 profile image
ingrid48

See below for OTHER

I find this forum a great support.

Judith53 profile image
Judith53

Updatedo on new treatments available and research

Katmal-UK profile image
Katmal-UK

As well as having OC myself I supported my mum with OC but that was over 25 years ago and things have come on in leaps and bounds in some areas.

Jomar96 profile image
Jomar96

I have found this forum enormously helpful since I joined in Jan 2019. Hearing of the experiences of the ladies living with this awful disease, the various treatments, what works and what doesn't has helped me to understand OC a little better. I have felt supported, educated and reassured even though I only follow and don't post. I believe the forum has helped me support my sister - who is not a member herself. I am in awe of the wonderful, resilient and generous ladies who share, support and encourage one another and of the moderators who ensure it is a safe and welcoming place for those who, sadly, find themselves visiting here.

Thank you.

SuperHubby24 profile image
SuperHubby24

Cancer obviously does not just effect the person with the diagnosis, its the entire family that have their lives turned upside-down. That's husbands, boyfriends, fiancés, parents, children and other relatives. To have the opportunity to meet and engage with 'people in your situation' would be hugely beneficial I feel. Coming from the angle of a husband with a wife that has terminal ovarian cancer, I personally welcome the chance to listen and engage, share opinions, emotions and experiences with people in a similar situation. If I am honest, that is the whole point of me being on this forum; to help others and I believe that 'Day Events with Talks/Activities' would be a terrific platform to do just that. Just to share experiences, good and sometimes bad, may just help someone a little and if it does then its absolutely worth it.

barleykeeper profile image
barleykeeper in reply to SuperHubby24

Hi - as a husband whose wife died this year of OC, I completely echo your thoughts. This site, and the ladies (mostly) who share their experiences on it, are absolutely fantastic, and it has buoyed me up over the past months. I still read the posts most days. Carol did not want to access the forum herself, preferring always to assume the disease would go into remission, but I was able to use the knowledge I gained to help me care for her. Similarly with the wonderful 'You, Me and the Big C' podcasts.

Maybe we can get something going?

Very best wishes to your wife and yourself.

Nick

SuperHubby24 profile image
SuperHubby24 in reply to barleykeeper

Hi Nick,

Thanks for your reply. It breaks my heart to hear of you sad loss. I have not heard of that podcast, but will definitely take a look. Sounds interesting. I tend to dip in and out of using the forum, but the messages/comments/feedback that I have had definitely imply that people are very receptive to hearing 'our' side of the story/experiences/thoughts/concerns. The bottom line for me is that if I can help just one person through this, then its absolutely worth doing! It would be interesting to explore how we can broaden this. Its sooooo tough for everybody, the thought of being able to give something back to the OC community as a whole is very appealing.

I would love to form ideas on how we help.

Kind regards,

Jim

barleykeeper profile image
barleykeeper in reply to SuperHubby24

Thanks Jim.

Let's let Anna chew on this a while shall we? Maybe I'll give her a call next week and see what ideas are swilling around.

Another thing I did, as we have friends and family around the world, was to run a blog on the American CaringBridge platform (designed to allow families and friends to communicate in situations such as this), which you may not have heard of. Carol's treatment was quite aggressive and acute in the 12 months we got from diagnosis, and this really helped to keep people in touch and allow them to offer supportive comments, which many did - and it avoided having to make endless phone calls. If it would help you to read that I'd be happy to share it, but will completely understand if you would prefer not to! It's a facility I'd be keen to promote.

Strangely, this is the first time I have seen your posts, and I have appreciated going back and reading them. I saw your Snapchat pic and thought 'that could be Carol!' You have a very lovely wife.

All the very best,

Nick

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear SuperHubby24 , barleykeeper and Jomar96

Thank you very much for your helpful comments. The reason for the poll is that we absolutely know that we need to look more at providing support for those who are supporting someone with ovarian cancer. We are putting this poll on Facebook too, and then depending on the results and comments we can start to put things in place.

I think the next step once we have both poll results is to get a focus group together to discuss the results and what would be helpful to arrange by way of support. If you would like to be part of the focus group (we could do it online/conference call for ease) or if you have any further comments or suggestions please do let me know. You can message me through the forum or email support@ovacome.org.uk or call me on 020 7299 6650 (I'm away from the office today and tomorrow but back next week).

We only want to put in place what will be useful and worth your time, so all feedback will be hugely valuable. Thank you very much for all your feedback so far.

Best wishes

Anna

Ovacome Support Service Manager

Sazzaroon profile image
Sazzaroon

I check this forum all time. Its brilliant

Clarissa profile image
Clarissa

I'm supporting my mum who has terminal ovarian cancer. I do read the posts on here and have once or twice asked for advice and people have been very supportive. She's very much older than most women on here but it's been the same journey, over eight years, with chemo, radio and all the hopes, fears and side effects that cancer brings. As we head towards the end I think it would help me just to talk to people who have been through this or are going through this with their loved ones. I don't like to post about it as I feel it would be distressing for those not at that stage. It's hard to know where to turn, really.

Thank you for recognising that more support might be a possibility.

Love and courage to anyone in the same position x

Howick01 profile image
Howick01

I did not have a good reply from someone who supported someone with OC as I said that we should never wish cancer on anyone no matter who they are.

I will therefore never reply again or post anything again.