Ovacome BEAT Symptom Tracker Demonstrations

[Whippit]

I've discovered colleges of further education and council offices in Wales have a series of Health Awareness Days and they are looking for health-related exhibitors.

I set up Ovacome's first stand in Wales at Cardiff and the Vale College in Barry yesterday. We offered advice on Ovarian Cancer and an opportunity for women to try out the BEAT symptom tracker.

The stand will be taken to Health Awareness Days at colleges and other venues across South-East Wales. If you hear of a health-awareness event in the travel-to-Cardiff area please pass on my contact details and I'll do my best to organise a visit to offer advice on Ovarian Cancer and an opportunity to try out the Ovacome BEAT Symptom Tracker.

Annie Mulholland

[e-mail]

[Hidden]

Well done Annie. What sort of response did you get?

[Whippit in reply to Hidden]

25 women tried the quick track. In fact one lady had been worried about a diagnosis of IBS for some years and I showed her the BEAT tracker on which you can record symptoms over a period, print them out and take them along to the GP. It seemed to be a really popular stand. I think people liked having something to do online. Lots of interesting discussions. Many women seemed to think Ovarian Cancer is detected through Cervical Smear Screening. None had heard that taking the combined oral pill may reduce the likelihood of developing Ovarian Cancer.

It really wasn't a lot of work to set up and I really enjoyed the day. Bought the silk flowers and a pair of teal silk curtains from Wilkinsons for £12, pinned up the tie-backs to make giant teal ribbons, and I bought a teal-coloured t-shirt for £2 from Primark. The teal scarf was a birthday present knitted by a dear friend. Display materials were just screen-shots from the Ovacome website blown up. I'm getting some more materials from Ruth Grigg this week.

The exhibition stall will be on show this Friday at another college in Cardiff, then at colleges in the SE Wales Valleys in March.

[Hidden]

Well done Annie, we should all do our best to make people aware.

Love n hugs

Viv

[Whippit in reply to Hidden]

Well you seem to be wearing teal too Viv! Really the problem is that we have a relatively short window after diagnosis when we're well enough to do a lot of campaigning. I'm doing my best while I'm feeling well. It will be a different ball game when I'm on my second and third line I'm sure.

The BEAT tracker is a superb tool and it's good to promote it in the light of the negative publicity last week following the Ovarian Action Research Paper which pointed a finger at GPs for misdiagnosis or late diagnosis.

I thought I'd mention the health-awareness days as if those of us who are well could attend just one in our local area it would help spread the word.

xx love to you, Annie

[citrine]

What a brilliant job you have done Annie.Well done. And the photo is great.

It does shock me that so many people believe that a smear test could detect ovarian cancer.There's certainly a lot of work to be done.

Love Mary xx

[Hidden]

Hi Annie Actually,

Wow! you have been busy, great idea as well, it is pretty shocking that most people have this false sense of security with a smear test, very good news for cervical cancer not so good for OC though. I read somewhere that when Jade Goody died that although more people were getting smear tests done (which is good) it then became counter productive for OC diagnosis as people thought they were ok.... Well done Annie (I don't know how you do it) and I love your enthusiasm, keep going love x G x

[Whippit in reply to Hidden]

What is really sad about smear tests is that they're very specific. They used to include a palpation of the abdomen but don't these days - perhaps because of time/cost? It would also be an opportunity to discuss the combination pill with women and to discuss some of the concerns about women who ovulate very late - up to 58 in my case.

Recent medical opinion has it that Ovarian Cancer may be a greater risk for women who reach the menopause late. All this could be discussed at screening tests if they took a broader view of women's health. xxx

[Hidden]

Glad it went well, makes it a bit easier for the next round once you have one under your belt.

See you later xx

[Whippit in reply to Hidden]

lol - is that the chemotherapy - or the stand! ? xxx see you later

[Whippit]

Just posting an update. I'm rather excited today as Ruth at Ovacome is helping with a press release for Wales. I've managed to track down a helpful person in the NCGP (National Council for GPs) which are devolved in Wales and they're going to ask their Chairman to make a statement on the value of the BEAT Symptom Tracker. whoo hoo - wish me luck with this ladies! xxx

[Jan76 in reply to Whippit]

Dear Annie ,

Well done Annie for spreading the word and getting the info out in the areas it is so needed and yes Annie good luck and well done again xxx

Love Jan xxxx

[Whippit in reply to Jan76]

I felt inspired by the TV clip of the lady in Northern Ireland who was interviewed after the Pathfinder Study. She said rather poignantly, 'I'm doing what I can but I'm only one person'. I just thought that it's in our interests to raise awareness of Ovarian Cancer if we can .... and in fact the day was really enjoyable and I met lots of lovely people.

Love Annie xxxx

[Hidden]

Well done Annie for spreading the word. I am in awe of women like yourself who organise these kind of awareness events to help other people.

Love Chris x x

[Whippit in reply to Hidden]

Dear Chris,

I promise you I'm nothing to be awed about - but today I did meet up with two very inspiring ladies and we're going to start up an Ovarian Cancer Support Network for SE Wales with our first meeting next month. We'll be posting up more about this and will send our details to Ovacome to add to their list of Ovarian Cancer Support Groups. xxxx

[hil65wil]

You are so brilliant Annie.

Well done.

Love Hilary xx

[Whippit in reply to hil65wil]

well thank you for your very kind comment - but I'm not brillant at all. Just trying to spread the word while I'm fit and able and in doing so make contacts in a new Support Group so when I no longer have the energy to make a noise on behalf of all ladies with Ovarian Cancer then someone or some other ladies will.

Love Annie xxx

[wendydee]

Well done, Annie!

Where did you get the info about the Health Awareness days? Was it through local councils? Brilliant initiative

Love Wendy xx

[Whippit in reply to wendydee]

oohh no I'm afraid I didn't have any initiative at all. Coleg Morgannwg's HR staff contacted Ovarian Cancer Action in London asking them to give a talk and put up a stand on a Health Awareness Day. They contacted me as the local Wales Ovarian Cancer Action Rep and asked if I would help. I agreed to this but asked if I could publicise the work and mission of Ovacome to which they readily agreed.

I've worked for about 20 years with the FE sector and what one college does they all do because basically they're told to it by their funding body and sometimes given some money to put on these initiatives. I thought I'd contact other colleges and South-East Wales and the response has been fantastic - though I do need to find other volunteers to help out. Chris (Darragh) is helping me at Coleg Morgannwg and hopefully once we get our SE Wales Ovarian Cancer Support Group up and running next month I'll discover new volunteers through that.

As I understand it local councils also have Health Promotion Officers and may hold health awareness days so it's worth contacting them too.

Love Annie xxxx

[Hidden]

Dear Annie

Congratulations in doing such a wonderful job turning round your misfortune to helping others maybe to avoid or at least treat this cruel disease early

You have achieved so much in so short a time.

Well done

Much love Suex

[Whippit in reply to Hidden]

Dear Sue - thanks for your lovely message. I had to smile at the thought of having a misfortune. I really haven't looked at Ovarian Cancer in that light. I was diagnosed in March two years ago and it's been a honeymoon as I've felt so well throughout.

I'm only doing a bit of PR because it's what I did when I worked - well I managed a PR function - so I rarely got to enjoy the pleasure of getting out to fairs and exhibitions and meeting people. My job was to manage the team that did and I always felt they were having more fun than me! Now I'm really enjoying what I'm doing. Hopefully it will do someone a bit of good - and I'm critically aware, as you say of having a short time to do this as my remission is coming to an end and might not have the energy to get out and about in the longer terms.

I'm just hoping that in setting up some resources and contacts that we can continue to get out and raise awareness of Ovarian Cancer. What a thought - When I'm on chemotherapy again and not feeling well I might end up in my old role - managing the people who are out and about having more fun than me!! lol

love Annie xxx

[Archiebanana]

Dear Annie

Well done for spreading the word. You really are an inspiration to us all, you work tirelessly for the benefit of others.

Thank you!

Love Linda xxx

[Whippit in reply to Archiebanana]

Dear Linda

Those are kind words - but really much too kind. See my comments to Sue above. I'm really just being selfish and enjoying myself - but hopefully in enjoying myself I'm also doing some good to someone at the same time.

I have this vision of encouraging anyone who has energy and an enjoyment in meeting people to set up stall. It really is so easy and very inexpensive. I had a great day at Cardiff and the Vale College on Tuesday and met some lovely people. I have another day booked for a much larger college in Cardiff on Friday so hopefully more people will come and visit the Ovacome stall and we can do our bit to BEAT ovarian cancer by making women aware of the symptoms before it's too late.

xxx love Annie

[Madz]

Hurrah Annie - really great that you are spreading the word, just by talking to close friends and family I find I am able to inform and advise, you have taken that extra step and that is brave and inspirational. I'm thinking what I can do in my better weeks and look forward to getting on the band wagon. You're so right about lack of abdominal palpation and examination, I feel that in my case that would have caught my condition sooner, in the end I did my own and went to the GP with my results!

Keep up the great work Annie

Big hugs Amanda xx

[Whippit in reply to Madz]

Dear Amanda

Thanks for your kind comments. I think you should concentrate on getting through the chemotherapy and the good days. I'm a couple of years ahead of you and didn't dream of doing this whilst on chemotherapy. I then went back to work and it's only now that I've started my retirement and have time and energy that I'm doing a bit of campaign work. It really is a very short window of opportunity I'm afraid. Probably one of the reasons Ovarian Cancer is so little understood.

I'm not feeling as well as I did a year ago and I'm looking at having another dose of the old bleach in the coming months so I don't suppose I shall feel up to being on the campaign trail then.

You're absolutely right about talking to family and friends. If you think about it that's a huge circle you're informing and advising.

Hope you're feeling better soon.

Love Annie xxx

[Madz]

Thanks Annie xxxx

[harley]

Well done Annie,

You really are an inspiration to us all, I have not been feeling too bad after my 1st / 13th chemo, just a bit low, hubby has nagged me not to do too much this time - I agreed, only to have myself nominated for a cancer charity cat walk show in April, I am excited at the prospect of being chosen to take part, it has given me a wee boost and I am thinking on all sorts of ways to raise funds.

You have spurred me on to get involved in awareness raising of OC although it is PPC I have.

Hope the old bleach doesnt affect you too much, just waiting for my hair to fall out, LOL.

Love

Joanna

xx

[Whippit in reply to harley]

Wow - a cat-walk model! I'm impressed. I'd never have the confidence to do that. I'd imagine you're pretty busy with your local politics, let alone worrying about fundraising or proseltysing about Ovarian Cancer or PPC. Each and every one of us is playing a part in raising awareness just by talking to family and friends or doing what comes naturally.

If something crops up locally that we can do - for instance the invite I had to put up a stand - then that's good too.

I'm not so confident with fundraising. I've received my exhibition pack from Ruth at Ovacome today so I'll do my best to sell some teal ribbons and badges at the fair tomorrow.

I'll lose my hair for the first time when I have my next course of bleach. I didn't have Taxol last time - not my decision but an admin error. Mind I was worried about losing my hair when I was told I'd have chemotherapy. This time I'm just grateful for anything they can give me that will buy some quality time and I'm currently scratching my head wondering how I can make myself feel fitter and more energetic. I've got an appointment with the GP on Tuesday - not my own - I'm going to ask about Fit Prescriptions that give you 15 weeks membership of a local leisure centre and access to classes put on especially for people who are unwell for one reason or another. I'd feel more confident joining that sort of class rather than trying to attempt a public Zumba Class with all those fit young people.

Good luck with your cat-walk. Wow - I hope you post up a blog and some pix .xxxxx

Love Annie