Yesterday I spent the morning at The Christie doing some awareness raising. I found it very rewarding and would really like to encourage people if they get the opportunity to give it a go. If anyone living in and around the Manchester area would like to do something similar at a local supermarket I would always be glad to come and help out.
You can read more about my awareness raising and other activities at my blog:
Well done Lorraine xx 
A great blog Lorraine. There's also a good opportunity if you're feeling up to it to putting on a display table in the waiting room of your local oncology unit to promote the charities that help and support women with Ovarian Cancer. It's amazing how isolated some women are with this disease and they haven't yet made contact with Ovacome, Target or Ovarian Cancer Action - particularly Ovacome and this website. xxx
That would be good I would need to chat with my CNS about the best place to do that as we have an inner and outer waiting room and the logistics might be a bit tricky as I can only carry so much on a bike.
It might be possible to take a banner to the hospital in a taxi. I had one made for Ovacome last year which is displayed in The Velindre for Ovarian Cancer Month. It may be the charities would cover your expenses if you ask them. They'd need to rethink the message on the banners though as symptoms-awareness isn't appropriate for an oncology waiting room - but a list of the support they offer and contact details is really helpful to patients. xxx
I think there are some great ideas here and well done Lorraine for giving of your time and energy today. I found this site by chance and was treated at the hospital where you've been today- during chemo I felt very isolated and it would have been great to be in touch with the OVCA charities from the start.
There is a really good Macmillan info centre at the hospital but I don't recall there been any info about the specific charities and their wide range of support, certainly my clinical team who were very stretched there did not pass on info which is a shame I think and a missed opportunity.
Here's hoping this is the beginning of a change and improvements for those women and their loved ones who follow us.
Sxx
There are some of the Ovacome booklets, TOC symptom leaflets and I have been in there recently and they had information on one of the Being Together days. I found out about Target from the Macmillan CNS at St Marys where I had my surgery.
That's great to hear that things are already improved in the course of a year. Hopefully this will become the case throughout the uk xx
Lorraine this is a great idea, I wish I'd known i would have called in to see you, and I would have been happy to help! I agree there are many women who are not aware of the charities, particularly Ovacome, and it would be great to provide more info. I volunteer at the Christie each week, and from what I have observed the corridor opposite the information centre, where you were yesterday, is the area where displays are permitted. I could ask at the information centre about the possibility of more awareness raising in relation to the charities and the support they can offer, or if they will display leaflets from the charities in the centre? If you have any other ideas for awareness raising in the Manchester area, let me know x
I think that would be too far from outpatients though Jan I will contact Viv Mealing and maybe Helen Savage to see if there is any possibility of using some noticeboard space in the waiting room but you are probably right we may not be allowed to. I think the spot opposite the information centre gets booked up quite quickly if was actually double booked for this week.
Hi, spoke to Sarah Jeffrey's from Target yesterday who arranged the stand , and actually the hospital were quite difficult about the display being done. My hospital also refuses charities to display at all , apart from macmillan, and the hospitals own fund raising charity . I was really shocked , but was told by my hospital that they 1. didnt have room , 2. couldnt be seen to favour one external charity over another, and 3. the hospitals own research charity desperately needed the money . However yesterdays display was not aimed at raising any money- no collecting tin or things for sale.
it seems such a shame, but maybe best if ovacome or target did the negotiating with hospitals . Was very sad to meet women at the christie yesterday who had ovarian cancer and had no idea of the support and information the charities offer us all.
Other places are much more open - supermarkets, pharmacies, and public buildings . My gyms just let me put a leaflet tonight in each of the 200 ladies lockers, put a post on their facebook site ( 2000 members ) and have a stand tomorrow in main reception.
The NHS management can be so frustrating!!!! Rant over
Hil xx
Yes Sarah was speaking of her frustrations. It doesn't hurt to ask but I think you are right but there may be other ways to get the message through.
Fabulous that you are doing so much Hilary- my understanding was similar to as you've said that there is reluctance and are barriers within the hospitals- I think it's such a shame as there is so much support needed beyond that that the overstretched NHS staff can provide yet this is vitally important alongside the medical care. I agree that perhaps a combined negotiation by the charities by way of advocating on behalf of women with Ovarian Cancer may be the best way forward... difficult but so, so worthwhile. When we visited York, I'm sure that some of the cold caps had been provided by a national breast cancer charity so there is surely the possibility of joint working with the voluntary sector, albeit with some bells attached!!
Good luck tomorrow with your stand- It seems like you may have some pleasant company!! Sxx
My concern is that the individual charities have their own agendas and also have limited resources to do this. I saw something interesting on Twitter last night about an inprovement program in Manchester for cancer patients. I might think about joining this as a patient representative
manchester.nhs.uk/improveyo...
Thank you so much for posting this link Lorraine, I may do the same. I understand what you mean about the limited resources but as has been clear from so many wonderful women's postings recently there is enthusiasm, personal expertise, commitment and women-power amongst those who are currently able to help on the ground. I'm just wondering if the charities could act as a point of national contact... there is already a network of ROCs here (? Is this the right acronym?!) and often it is easier to effect real change by contacts being made at a senior level. It doesn't preclude the different charities from continue to fulfil their specialised remit but I think they all share a common interest in helping women with ovarian cancer and during initial treatment this is when it is most needed.... Just my musings!! Much love xxx
Hi there... it's great you're getting out and doing this. I had crushing loneliness when I was first diagnosed and it was because I had no connection with other women with the disease. Having people around me who understand totally how I feel and also knowing there are organisations out there fighting our corner has, I think, lead to me feeling much better about the disease and about myself. So, it's sad that so many obstacles are getting in the way like this. Still, onwards and upwards.. and thank you (and Annie and Hilary.. and so many others) so much for trying to help people like us. T xxxx
Thank you I have always valued your support especially because we were both diagnosed with the low grade disease. I think for some of us along with the physical symptoms there also emotional symptoms. I have also battled with feelings of depression, loss of identity, lack of confidence, isolation and suicidal thoughts. Thank you for your radio interview xx
Thanks Lorraine .. I feel I'm coming through the other side a lot now Lorraine. in terms of my emotions. Nothing, to me replaces the contact I've had with friends here. It's right what Gwyn says .. That it's the club nobody wants to belong to and yet it's ironic that it's the best club in the world too. Xx
I've never really had many female friends until I got OC and its one of the most positive aspects of being 'in the club'
Sounds good Lorraine. I was at the Christie yesterday having treatment and would have looked for you if I'd known. I too have done some awareness raising in my local library and in the group that a friend and I set up as a cancer support group a few years ago. I have been putting posters and leaflets around different places. I'm going to aWI meeting soon. I am interested in talking to you about more awareness training if you ever fancy teaming up. Have you seem my website www cancer self care.com?
Francesca x
Sorry but I was there on Monday the stand is there all week but only able to be staffed Monday and Thursday. I think teaming up sounds like a good idea. Do you ever go to the support group organised by Helen Savage?
Hi Francesca,
I wish i had known you were at the Christie yesterday, I was there all day! if you are there any Tuesday, pop into headstart on the main corridor (dept 12), I volunteer there each week, it would be lovely to meet and say hello x
That's great. I'm having weekly chemo on Tuesdays so will pop in to see you next Tuesday afternoon. Be good to meet at last! The taxol is working well without such bad side effects and my CA 125 has dropped from 1200 to 29 after 7 sessions. Love Francesca x
Great news about your CA125,
I will be there Tuesday, 'til about 3.30, look forward to meeting you x
I have heard of it but not been yet. do you go? When is it? Lets have a chat sometime. I think you have my number x
Will do
Raising Awareness?
Raising awareness
My own little success in raising awareness.
Yorkshire Cancer Network - Pilot Raising Symptom Awareness of OC
