There was a discussion recently when quite a few Members said they'd like to link up with people face-to-face but there is nothing in their area.
A couple of us have launched ovarian cancer support groups this year. Gill (MidwifeGill) has established one in East Berkshire, and ours in Cardiff will have its inaugural meeting on Wednesday 27 March. By coincidence both groups will continue to meet on the last Wednesday of each month.
I thought it might be helpful to start a discussion about what support you have in your area, what you like or would like, what you don't like or wouldn't like, and what you'd really want to get out of a support group.
I also thought it might be a source of information for anyone who's motivated to start something of their own. It can be quite a daunting experience, I was lucky enough to meet Chris (Darragh) who lives near me so it's been very much a joint effort and a lot of fun too.
Gill (MidwifeGill) is incredibly IT savvy and has started her own blog on her Cancer Journey and has set up a web site to advertise her East Berkshire Support Group. I'd love to be able to do the same but my IT skills aren't that developed yet and I'll have to do a bit of research to find out how to go about this.
In googling 'support groups' I discovered Macmillan will provide help, training and courses, and financial support to start up local cancer support groups. This is really helpful as it will provide networking opportunities to share good practice. You can find out more at:
Chris and I will be promoting our support group throughout Ovarian Cancer Month at our local cancer centre. They've agreed that we can have a static display and a table in the waiting room at each of the Ovarian Cancer follow-up clinics on Tuesdays and Thursdays. We'll be taking our interactive demonstration kit along to encourage more women to use the Ovacome site but it's also a great opportunity to tell them about the new support group.
It's funny to think isn't it that it can be very lonely having Ovarian Cancer and yet when we're sitting in the local hospital waiting for appointments we're all together but just not talking to one another. I'm really hoping our stall in the Velindre will get us talking and meeting one another for support, and attracting new members to the Ovacome friendship circle.
Please use this blog to talk about support groups - even if you don't have one yet. It would be great to pool ideas.
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Hi Annie
Good luck with your new support group. I was very fortunate that my nurse gave me the details of a local group when I was having chemo. We meet on the second Wednesday of each month at the South East Cancer Centre in Purley, Surrey at 6.30 pm. New members are always welcome. It really helps to hear the stories of other local women and to share information about other support available. We are able to support each other when the going gets tough but usually have a good laugh. Our group is organised by Adele Sewell who can be contacted via this site.
That's really helpful. I met Adele Sewell at the last consultation meeting in London. I'll get in touch with her about her meetings.
What kind of things do you enjoy about the meetings? Are them informal - just chatting and coffee, or do you have speakers or activities.
Wendy's has a yoga session to finish which she says is really relaxing. Do you do the same?
I see now there are two support groups that meet in the evening. Is this a good time and do you think more people can come because it's out of office hours. I hadn't thought of that before. Ours will be at lunch time unless people want something different.
We do have a programme for our meetings, but they usually end up as tea, cake and chat. We had a visitor before Christmas who introduced us to complementary therapies. We also has a good meeting a while ago on juicing, with demonstrations and lovely samples. Another time, Sue Martensz, who helps organise our group, brought in the hats she sells through her business Tits for Tats and we had fun trying them on. Yoga sounds good, though it isn't something we have tried.
Meeting in the evening works best for us as half of the members still work. It would be good to hear what your group and others get up to.
Thanks Ann, you've given me loads of great ideas. We'll keep our options open about the time we meet as we'd hate to exclude women who are working. We have a really good wig shop in Cardiff. I wonder if we could persuade them to come along. Love the milliner's name Tits for Tats. xxx
This is a great idea, our local support group is for all gynaecological cancers and meets at The Robert Ogden Centre at St James University Hospital in Leeds on the first tuesday in the month at 6.30pm.
That's really helpful. How do you find it having a support group for all gynae cancers? The oncologist at the Velindre originally suggested we cover more generic gynae cancers and we wondered whether this would dilute the help a support group would offer.
What form do your meetings take? Are they formal with speakers and activities, or informal coffee, etc.
How do you find it having a support group in a hospital setting. What are the benefits to this? I'd be really interested to know.
The Robert Ogden Centre is actually a stand alone building outside, but within the grounds of the hopital and it is very welcoming and not like a hospital at all, the benefits of having it here are that it is easy to get to, of course everyone knows where it is, they have free on site parking, and the room is free of charge.
Having a group for all gynae isnt really a problem, however most of the members do seem to have OC.
The group is run by our CNS and her colleagues and meetings are informal. I have only been to two meeting so far, the first one was coffee, home made cakes and a chat, the second had speakers from Yorkshire Cancer Research.
There are also activities (i think we have a blackjack table for our next meeting!), and there are also some social events such as a fundraiser at a local club, and they went out for a Christmas meal recently.
This is a fantastic resource at Leeds. I found the site 'Kissing it Better' and the Facebook pages. What a breath of fresh air!
I loved the ideas tab on the blog - for anyone to send in ideas that might be developed into something to help the group. How refreshing. I loved Liz's comments on Facebook about hospitals being overly careful and stopping children singing in a ward, ruling that her Mum should not have a candle on her birthday cake, and stopping free complimentary medicine. I so agree with all that Liz said.
My brother had a near fatal stroke in the US and was in Intensive Care there. He and my sister-in-law had a bluegrass band and she would play to him. Even in his comatose state his fingers would move to the beat when she sang so we knew he could hear her and I felt it helped to connect him to the world. The hospital there took an entirely different view to yours in Leeds and asked if my sister-in-law would take her guitar and sing in their oncology unit. She spent 8 weeks in that hospital. I think it helped her to sing every day and help other patients and it certainly brightened up the lives of the patients.
The Kissing it Better and Robert Ogden Centre are first-rate examples of what we should all aspire to. I hope anyone who lives in the Leeds area finds out about it and the inspiring people who are involved in it as it is a great resource. There are many advantages to having a centre which is on a hospital site but not a hospital.
Thanks so much for posting and sharing this information. Truly inspirational!
I am not criticising the group in any way and I am sure it is of benefit to many people but I would prefer to attend a group just for people with ovca .I feel I spend enough time in hospitals and would prefer a different/more informal setting.
I've been spending a lot of time thinking about support groups in the last few weeks. What is hospitals were more imaginative about the seating in waiting rooms so people could choose an OC area and chat if they wanted to. We might not even need so many support group meetings as we'd all be using that waiting time more proactively making friends.
I'm rather of your view. I'd rather attend a support group for just women with Ovarian Cancer. I've met a few women locally and we've all hit it off immediately because we have things in common and shared goals.
That's a good idea about the seating in the waiting rooms.
Although a friend came with me to chemotherapy I found it very cold and clinical and felt more could have been done there to encourage communication between patients - an ovca section there would have been beneficial.
Anne x
Hi Annie
some food for thought here. I didn't think of evening meetings, probably because it's winter and cold and a lot of women don't like to go out in the evenings. It makes sense though especially if there are people still in work and couldn't make the daytime. We can play that by ear and change if the demand dictates.
Passed our table today, it will look much better next month with a bit of colour.
I live in the land of the concrete cows, donuts (roundabouts!) and the Dons in Buckinghamshire - which, just incase you didn`t get the clues is Milton Keynes, and I am interested to know if there is an OC support group locally.
If you were to find an OC support group what would you want to get from it?
Does is matter that we've called ours an Ovarian Cancer Support Group and visitors will have to ask at the hotel reception for our group. Now I've read your post I wonder whether our flyers and signposts shouldn't be entitled OC Support Group.
What do you think? xx
There are a lot of spanners going into the works here. I think as a start we had to call it Ovarian Cancer Support group, otherwise our members wouldn't know we were about. Maybe once it is up and running the name can be changed. We would just need to borrow the table again to let it be known. I don't have a problem with it and I'm sure most people won't. Hope so anyway xx
Hi! Good luck with the new support groups. It all sounds really exciting
We have a gynae cancer support group at the local hospital, which is really good. It's run by the CNS team and volunteers. Any patients and carers can come along and there's coffee, tea, cakes and chat. there is always a chance to have an informal chat with a CNS too, which is a lifeline for some women. There's a lot of support locally for the group and they organise quiz nights, fashion shows and meals out as well as having the meeting on the first Saturday of each month, from 10.00 am - 1.00 pm. They have complementary therapies, relaxation sessions all free to patients. We moved back to the hospital because the other venue we tried at a local hotel was unable to give us treatment rooms for reiki, reflexology etc.
I take the point about having a group especially for OC or a venue in a hospital though. The group is called COPES and if you google COPES, Southend Hospital, anyone can have a look. I put out a couple of message on here for maybe a lunch meeting for OCgirls in south Essex, and only got one response, but maybe I'll go ahead with that in the summer.
Thanks for all your thoughts Wendy. Lots of good ideas for us.
I hope if you try your lunch idea again it gets more response. You could ask Southend Hospital if you can set up stall on the days of the OC clinics. We start next week and will let you know whether we get any interest from patients.
I'm doing a stall at the OC awareness event in the hospital next month too. Like your idea of the dongle and notepad...I knicked that one from your plans! luv W xx
eeek do you need our kit? Next month we're using the kit each Tuesdays and Thursday except Thursdays 14 and 28th. I can get it over to you if you need it on the Thursday or Friday of those weeks.
Jean (Yogin01UK) is of the same view as me about hospitals and wi-fi ...wi-not!? It's a pain they don't get themselves a bit of an update as it would while away the time we spend in waiting rooms and on wards.
Let me know if the kit is needed the days we won't be using it. xxx love Annie
That's fine, Annie. Thanks for the offer. I have a laptop and a dongle, so that's OK. I've got quite a few things that I've used before too and materials from Ovacome. Thanks for the offer though. I agree with you and Jean About wifi in hospitals.
I think this site is wonderful and I have found it so supportive and informative, but I do feel there is much to be gained from an empathetic arm round ones shoulders. I found this to be so true when my son died. Pain, mental or physical, can be so isolating, and to have someone close who feels or has felt exactly the same is greatly comforting. From my personal experience sharing and understanding each others pain leads to greater acceptance and management of the pain.
Like most women I had heard of ovarian cancer, but to be perfectly honest if anyone had asked me a few months ago what the symptoms were, if any, I really would not have had a clue. I do therefore feel that somehow there must be more awareness of this disease. I have already spread the word amongst many of the women I know. Prevention and cures ( may that be soon) are for the worlds of medicine and science, but basic awareness can come from ladies like us spreading the word, and perhaps in addition to providing support to fellow sufferers local groups can also serve to inform others.
I so much agree with what you so about raising awareness of Ovarian Cancer. We've developed a kit here which can be taken to health days or events to raise awareness of Ovarian Cancer. You've most welcome to borrow it if you hear of something in your area where you can set up your stall.
We have a display stand for literature on Ovacome, Ovarian Cancer, BEAT flyers, etc, a teal cloth, vase and flowers, a dongle and an Apple Mac Book. We've been demonstrating the Ovacome BEAT Symptom Tracker and lots of women have stopped by to try it out. It's good just as a talking point and helps raise awareness of the various symptoms by engaging with the quiz. I've been suggesting women try it to reassure themselves they don't have any symptoms and that pitch seems to have been well-received. Of course it's also helpful if women are getting worrying symptoms and you can then show them the tracker that you complete as and when you get symptoms and print it off and take it along to the GP.
If you hear of an event where this toolkit would be helpful let me know and I'll get it to you.
I also agree with you about this site and was just thinking this afternoon how isolating grief and worry can be. It seems you've had more than your fair share of late. It's just good to share and on this site hugs need to be virtual unless you can meet up with members locally or at one of the days run by Ovacome. I've found these very helpful too.
I have belonged to a support group based in the day centre of St Ann's Hospice, Little Hulton, Manchester since 2002. Initially it was set up by the breast care nurse at Salford Royal Hospital for breast cancer patients but is now open to all cancer patients and their carers. I was the first with Ovarian Cancer to attend but we then had two or three more. The support and friends I have made over the years has been fantastic.
We meet on the last Tuesday of each month 7 - 9pm . Ladies who live some distance away we have designated drivers who will bring and we pay 40p per mile. We received funding for this from Macmillan. Also they have funded £300 towards the cost of a coach for a trip out in the summer,. We invite partners or friends and they pay a token £10 towards the cost too.
We also have a Christmas meal paid for by the group for members with cancer.
We pay £2 per meeting and have a raffle of items brought in by members at £1 a ticket.
Each year each member receives 4 vouchers upto the value of £25 for therapies and 4 vouchers to the value of £20. For members with secondary or recurrent cancer they receive 8 vouchers to the value of £25. Not every member uses these vouchers but they know they are there if they wish to.
Previously we have had speakers on all sorts of subjects from local history, chocolate making demonstration, Wiltshire farm food presentation with eats, sometimes cancer related or genetic. Sometimes we just have evenings where we chat and exchange stories, try to help with worries and have a laugh. Our midwife Gill (not the same one as on here) does a relaxation to finish with.
Obviously we have over the years fund-raised one lady who joined the group for support following the sudden death of her father to cancer (three weeks) did a tandem parachute jump and raised £2000 which was a tremendous effort. Coffee days also raise quite a lot of money but a team of dedicated ladies is needed to organise. There are grants available from Macmillan - Supporting us to help others which will fund training, etc. Community grants although these days they are not as easily come by.
This is all such helpful information. Thanks so much for sharing it with us and inspiring us with the ideas from your support group. I've only just found the Macmillan information on helping with Support Groups and I'm going to look into this. Your group seems to offer something for everyone which is the ideal situation and I found the information on charges really helpful as it will help us guage where to pitch this.
Dear Hilary, I have every admiration for you going with the Rotterdam Regime. I've heard it is totally exhausting - but I've also heard very good reports of its effectiveness.If it works well it's worth getting through it. I could never put you to shame - far from it - it's just that I'm just feeling fine for the time being and reckon I should be doing something while I can.
Hope I don't get up anyones nose with my constant antics. I'll be my turn soon for a 2nd line of chemotherapy and that might keep me in my place.
Loads of love and luck with the RR. Virtual hugs, tea and sympathy coming your way. xxx love Annie
Thanks Annie, No you don't get up anyone's nose. It is a breath of fresh air when you post please never stop.
Thankyou for your comments about the RR they have boosted me up. I have always been so positive so it has been a tough few weeks but I have got to continue to be positive.
My friend Michelle who I met on this sight, has set up a support group called Brafternoon.it is a support group for all cancers that have affected ladies. We meet once a month at the white Horse in Hertingfordbury Hertford. It's a very light hearted get together with a lovely lunch and loads to talk about,I really look forward to it and have made some good friends. Four of the ladies there have all got OC all different stages.michelle always gets someone to give a talk we have had Macmillan,a life coach and many more.anyone is welcome if you put Brafternoon in our group will come up.
Thanks for commenting on Brafternoon. I read in other blogs about it and found it on Google. I was really impressed at the whole organisation of it and especially the web site which is really professional.
Part of what we've chosen to do in Cardiff is based on Michelle's idea of having lunch. We're starting off with a coffee meeting first of all to test the water but have chosen a hotel that serves very reasonable lunches and has a variety of rooms we can use so we could start by just a few of us geting together for a coffee but there are rooms within the same hotel for a larger group and for us to have lunch if that's what everyone wants.
It's so helpful getting feedback on the various support mechanisms available.
Many years ago I spent a week in Hertfordingbury on a house exchange holiday. Lovely area and lovely village. I don't remember the White Horse but our children were very young so we probably didn't get out so much then. xxxx Annie
Good luck Hilary with round two of RR. Only three weeks more. I'm just coming upto my "week off" and am sooooo looking forward to it as I'm hoping I might have some energy.
Just back from Christies. My bloods at rock bottom should be 1.5 ish and down to .3 so no chemo today/tonight. Apparantly it is normal to have to take another week. Kay whom I met last time is on her last one today and she also had an extra week off.
If I was anything to go by please don't have too high expectations of loads of energy.
If anything I think I have been more tired this last two weeks probably due to blood effect. Last week Kay and the other ladies were told there were no beds available and they would have to come back next day. They all revolted and lo beds were found.
I do hope you find some energy, keep positive and keep smiling.
I was rather tickled by the image of revolting ladies demanding beds at Christies. There's something of the Suffrage spirit in us all. Well done to all the assertive ladies at the Christie. Bet they won't mess with them again! lol
Have been thinking of you on your RR and hoping you're seeing the light at the end of the tunnel.
I am sure the ladies weren't revolting haha made me smile Annie
I have really struggled with RR. The tiredness is so debilitating and sapping of my positivity. I try to give myself a good talking to from time to time with varying amounts of success. I had thought this wonderful weather would lift me but still waiting. I do not suffer from depression but wonder if that maybe holding me back now.
I go again tomorrow so see how my bloods are whether I get my first treatment of the next three.
Keep reading. Don't worry about posting. I'd love to think a bit of our silliness cheers you up a bit.
Good on you for giving yourself a talking to. You've got some pluck and it's not such a bad thing to do to have a rain check. Don't fret too much if it doesn't work right now. Doesn't mean you're depressed -it just means you're suffering from a chemically-induced temporary state of malaise.
But do send a message if that would help. We're here in all our guises to help and do what we can to cheer you along and wish you every success with this beast of a regime.
Bag packed got to be up 6.30 to get there for 8.00. Why I have to be there so early when nothing more will happen until 4ish in afternoon. I's not to question y....
I'll have to remember that phrase chemically-induced temporary state of malaise. You have a lovely turn of phrase.
Hope your project at Valendre is going well. You will be exhausted by April 1st. Best of luck with it.
I go to a gynae cancer support group in Exeter. It was started just after I was diagnosed in 2009 by the two specialist nurses and a counsellor. It's held in the hospital grounds in the FORCE building a building for cancer patients,carers and families. lovely place.
We meet from 10.30 to 12.30 nce a month on a Thursday. Had it been in an evening I would have been unable to go as I don't drive and live about an hour away from Exeter.
We only have people affected by cancer at the meetings because very personal things are being talked about and we all agree that things spoken about in the group remain in the group.Any speakers etc that come either come at the beginning for an hour or the final hour.
Needless to say we have tea coffee and homemade cake.
This is really helpful stuff. Good to hear the flip side of evening events. It's absolutely brilliant to have a special building for cancer patients, carers and families which is part of the hospital complex but distinct and a lovely place to be. Unfortunately we don't have anything like that here in Cardiff.
It seems home made cake and coffee is a popular choice. I'll have to get baking before our first meeting on 27th March.
Do you find it's enough to have a cancer support group in Exeter or would it be better for you to have one more locally. That's quite a long journey you make and we hadn't imagined that people would come from so far afield.
Would love to set up a help group here in Fife Scotland , but just don't feel i have enough support up here to run it on my own , but will think of asking Maggies if they can put me in touch with others that have Ovarian cancer near where i am , as i actually haven't met any as it Edinburgh i get my treatment , but definately think we need something up here in Scotland xx
A few of us here in South Wales met up through the Ovacome site and we all feel it's a lonely experience having cancer. It's not exactly a conversation piece with open groups and even family can misunderstand or feel uncomfortable if it's discussed. I've experienced this recently trying to deal with two weddings coming up this summer and mentioning that I may well be back on chemotherapy and if so not to be upset if I'm unable to take part in the whole event.
It's also a lonely business trying to set up a support group. I'd suggest contacting McMillan as they offer a high level of support - funds and training courses. This is essential to give you ideas and to get in touch with other people doing the same thing. You would also need to be in touch with a few women with cancer that you might meet in your chemotherapy ward as you just can't do it all on your own. It did occur to me in the setting up of our support group that if the hospital were more imaginative about the seating in the waiting room so that we were grouped in circles we'd all get to talk to one another and there wouldn't need to be the bother of setting up separate support groups.
You've reminded me about Maggies. Thank you for that. There's one in Swansea so I really need to take myself off there to find out what goes on, and who knows, perhaps meet new potential members. I can't get my head round the statistics. There are 400 women diagnosed with Ovarian Cancer each year in Wales. 1/3 of the population of Wales lives in Cardiff. I can't work out why there are not more members of Ovacome in this area and for this reason I've set up this interactive demonstration in the waiting room at my local cancer centre. They've given me the list of Ovarian Cancer Follow-up Appointments so Chris and I are going to turn up at each one during March and encourage more women to join Ovacome. It's a convoluted approach to raising awareness of Ovarian Cancer - but I reckon the more members of Ovacome, the more women will feel able to talk about this disease and then we might improve diagnosis rates before it's all too late.
It's good of you to be thinking of support groups. You're just back on the chemo this week. How are you feeling? I don't suppose it gets any easier.
There is a separate buliding called BIg C Centre at the Norfolk and Norwich University Hospital - I've been there once, before my first Onc appointment - very friendly and welcoming. The local Gynae Cancer support group has their meetings here and I was given their programme, though I haven't been to any of the meetings These are once every two months - some mornings, some afternoons some early evenings. The only downside is the difficulty and cost of parking at the hospital site.
Thanks for your comments. That's a good point about parking. For some reason The Velindre in Cardiff doesn't charge for parking. All other hospitals do. One of the things that concerned us in finding a venue was disabled access. Our planning meeting was in a beautiful hotel overlooking Cardiff from the Caerphilly Mountain. Two drawbacks. The disabled parking and access were poor, and it was next to the crem so every time I'd been to this particularly lovely hotel there was a funeral party in there.
So much to think of organising a support group!.
Hope you get to the support group to find out whether it's good.
Thanks Annie, the parking is a really huge issue for anyone visiting the Norfolk & Norwich. I was lucky in that my chemo appts were all around 9.930 am - not so bad then but almost impossible to get spaces in the afternoons....
In their appt letters, they suggest you use the park and ride but this is quite a big deal for anyone who isn't very well ( ie a large proportion of hospital patients) and also means the visit there takes up much more time.
I like the of meetings being in a nice hotel away from the hospital - lots of good luck and best wishes for your fledgling group. Sheila xx
thank you for discussing the east Berkshire support group. We are fellow ROCC's so as we trained together it is magical we started these groups together x getting the word out is not easy, our oncology departments could easily pull up a spread sheet if all the OC patients ( I did it all the time when a teenage pregnancy midwife so I could reach the teen mothers.) and a poster sent out with label mail merge... Will work on the clinical nurse specialist ( not a great role model locally) lol.... X
Ovacome have given me a list of local women registered with them... I'll be getting a poster out to these soon.
Had 6 at the first meeting :-). 3 at the 2nd.... Pleased with this x
Web eden is the host site I use and I find the templates easy x have a look.
One of our members Shelley, is having a coffee morning in 2/52 time and contributions are going to our support group kitty... Watch this space x gill
Ps... Back on oral chemo and Alvastin ca 125 up to 2200!! Higher than when diagnosed !
CT scan shows all tumours gone but oncologist says trouble brewing.... Now ascites building, awaiting permanent abdominal port xxx
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luv W xx
ca 125 up to 2200!! Higher than when diagnosed ! 
Ovacome launch Young Ovarian Cancer Support Network
World Ovarian Cancer Day, May 8th 2013
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