Health and Wellbeing Event in Cardiff - Friday 4 April 2014

[Whippit]

Hi everyone - this is a message for anyone in the Cardiff area on Friday 4 April. The CNS at Llandough Hopsital is organising an event for all women with gynae cancer and their friends/supporters. Here is the invite:

We would like to invite you to our

“Health and well being event”

Being held at Cardiff Central Library (next to John Lewis)

On Friday April 4th between 1.30 - 4.30.

Join us for an informal afternoon, meet other ladies, charities and support groups, there will be an art exhibition, excellent raffle prizes and enjoy tea & cakes.

If anyone would like to help out with an awareness-raising stall for ovarian cancer at this event please send me a PM. I've got display materials and flyers at home but can't make the event as I shall be in France on that day.

[Langstonelady]

Im going to have a look xx

[Hidden]

Sounds like they're engaging with everyone. I think that's brilliant Annie xx

[Whippit in reply to Hidden]

I think it's a good idea where there are relatively few patients to have a ladies' get-together. xx

[Hidden in reply to Whippit]

Provision of aftercare in England is very patchy to say the least ... with some women getting an award winning level of support and some, being treated by the same Clinical Nurse Specialists, but who live slightly out from the hub, and hence in a different Local Authority, getting none or hardly any support. I have tried to make inroads in my own area but was told by Public Health that I was represented by Ovacome. When I asked Ovacome who my representative was on the two CCGs in my area, it was difficult to get an answer. I'm not sure why, but, anyway, I just thought I'd say this because not having a channel for a voice means that women are having to put up with less than they deserve. I'd be interested to see what Ovacome as an organisation has to say about this, but I might just add too that they have been incredibly supportive to me in other areas and for that, I'm truly thankful. T xx

[Whippit in reply to Hidden]

Hi Tina, I wonder how it works in England with patients having a choice as to where they receive their treatment. I get CNS support from the Marsden but I live 180 miles away and I haven't really needed anything yet. If I were a patient living in England would I get my treatment at my hospital of choice which might be at some distance, but support arranged by my local hospital?

I have heard there are hospices locally here in Wales. It would be interesting to find out whether I can access their services even though I'm an NHS patient in England. As I say, I don't seem to have needed any extra support to date and the one time I needed advice there was a 24 hour telephone advice line provided by the hospital which was available to answer my query.

I've always thought the idea of travelling further afield for treatment or trials would only really be feasible if women are either generally fit as I am at the present time, or have a great deal of support. Anyone travelling a distance would need the financial means to pay for travel and possibly accommodation.

I have a friend who lives in a fairly remote part of England and who receives oncology services at an outreach clinic in a non-specialist hospital. From what she describes the whole provision there is very patchy, not just after-support, and very different from my experience in London.

I'd ring Ovacome again. If they are providing representation on your local committee they must know who is providing it. Equally your local service should be able to provide the name of the person representing patients. It is after all the CCG and not the KGB!!!

[Hidden in reply to Whippit]

Yes.. I may mail again. There are things I'd like to voice. I was a speaker at a Regional Ovarian Conference recently and obviously, I'd like to talk with the representative about issues I feel arose from that so that there may be changes in my area. Incidentally, nobody was there from my own Public Health, Champs or any Local Authority elected member of the Health and Wellbeing Board. When I was told Ovarian couldn't be prioritised for discussion at the Health and WBB's meeting even with The Be Clear Campaign going on, I was shocked. Especially, considering the shocking late and misdiagnosis stats, but I really didn't think not prioritising meant not bothering. The CCG GPs were there which was really great. T xx

[Whippit in reply to Hidden]

I wouldn't mail. I'd ring and request an answer. You should know who's representing you in your local area in order to make representation. There must be a named individual. The NHS is accountable to the public. Mind, the more I get into it the more I am mystified by how it works. xxxx

[Hidden in reply to Whippit]

Hi Annie .. that's a good idea .. It is hard to fathom out NHS structures but they're a lot clearer to me now. I think Public Health may have been mistaken so I will call. Xx

[Luvitlife in reply to Whippit]

Hi is this only for cardiff area patients please? I do feel isolated--a3rd recurrence has just happened. Thanks

[Hidden in reply to Luvitlife]

Hi there ...I'm sure Annie will be on soon.. I can really understand your sense of isolation .. and to feel that on a third recurrence is hard. Lots of love to you .. T xxx

[Langstonelady in reply to Luvitlife]

I live in Newport, yet had my treatment at Llandough. You would be very welcome I am sure xxx

[Langstonelady in reply to Luvitlife]

Anyone would be welcome xx

[Whippit in reply to Luvitlife]

Hello Luvitlife, I'm really sorry I didn't come online before to see your post. Of course you would be welcome to attend the event in Cardiff. It's always good to meet people and I have a very dear friend who attends The Singleton whom I met through this site.

There's also Maggies in Swansea which is absolutely brilliant. They organise quite a few events where you could meet people. I was really impressed with your CNS team. I'm sure if you mentioned how isolated you feel they will have some ideas for you. In fact there is going to be a Target Come Together Day for women with ovarian cancer in the Maggie Centre in the Singleton Hospital on Tuesday 13 May. The CNS nurses are helping to organise it. Get in touch with Mike Feakes at the charity Target Ovarian Cancer Tel: [phone] and he will tell you about it and take a booking.

Details of the Come Together Day in Swansea can be found here:

targetovariancancer.org.uk/...

You might also find their course at the Penny Brohn in Bristol helpful. It's for women with recurrent ovarian cancer. Quite a number of women on this forum have been to Penny Brohn and have found it really helpful. Details are here:

targetovariancancer.org.uk/...

I'll PM my friend in your area. It would be good for you to be in touch.

xx love Annie

[Luvitlife]

Many thanks for replies. I live and have treatment in Swansea so l guess the support systems wouldnt apply. Any ideas to help night sweats please l am waiting for treatment at present.

[Whippit in reply to Luvitlife]

You're unlucky to have night sweats still. I kept a damp facecloth by the bed, and also changed my duvet into one that is made of two parts and is stuffed with goosefeather which is nice and light. The duvet consists of a lightweight duvet and a thicker duvet that button together for the winter months but you can use them singly for autumn and summer.

I'm sure there will be loads of other ideas. xxx love Annie