health awareness campaign: Had my meeting with... - My Ovacome

My Ovacome

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health awareness campaign

poleglass profile image
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Had my meeting with health minister n. Ireland Mr. Edwin Poots and the health committee.Frances from target ovarian cancer flew over for it and attended it with me. The health campaign will begin after the summer, so probably september. I think frances will have photo on their web site if anyone is interested. Am thrilled that this is finally going to happen. Had scan on friday and ca125 is well up. Wont get results until 30th. april when I have app. with oncology. The waiting is the worst I think.ill just have to take it on the chin whatever the outcome.xuna

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poleglass profile image
poleglass
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11 Replies

Think positive Una, I know it's almost impossible but I really really hope it isn't anything sinister.

You have done a fab job in NI, just think of all the good it is going to do. I only hope our ministers are as responsive.

Good luck for 30th

much love Chris xx

You are doing so much. I am so sorry your numbers are up. I hope your campaigning might help you to get the best possible treatment. Cx

Sorry that you are having problems.. sending you my best wishes love x G x

wendydee profile image
wendydee

Una, You're having such an impact with your campaign! You really are an inspiration. I am sure we're all hoping your fears are not realised when you have your next Onc appt. Will be sending posivibes and love

Love Wendy xx

Whippit profile image
Whippit

Dear Una

You've done so well so far. It's fantastic the N Ireland Assembly are taking so much notice and getting the Health Awareness Campaign up and running.

Target are really supportive. They've invited me to join an All Party Committee for Ovarian Cancer in Westminster. My first meeting is in June. The Health Improvement Secretary just told me he didn't have any money for a campaign. I suggested it didn't have to be anything fancy in Wales and if we could harness the resource of the 400 women a year who are diagnosed to help with the campaign it could be done relatively cheaply. I could have been upset by such a callous response. Of course they have money. They just decide to spend it on other things and they have other health campaigns in Wales such as testicular cancer awareness and anti-smoking.

Do you find you're on your own in Northern Ireland. We've started a support group in Cardiff and I hope more women will join as time goes on. We really need a strong lobby to make our voices heard.

Anyone in Wales who feels strongly about this please get in touch. We do need to be united to bring about changes in Wales - and particularly to investigate the unfair allocation of treatments recently.

Good luck with your oncology appointment Una. They do say if you feel well you can continue without more chemotherapy even if the CA125 is rising. I'm in exactly the same situation and just monitoring for more symptoms.

Sending loads of love and hugs. xxxx Annie

poleglass profile image
poleglass in reply to Whippit

Annie.here in n. ireland I have no one like myself to talk too, as the other 4 women have sadly passed on and i do find it difficult.By campaigning, it helps me keep positively focused. As far as treatment is concerned, i suppose it will depend where the tumours are lying as the last time they were near liver bowel diaphram and kidney and in lymph nodes under the heart and they had no option than to put me back in treatment. I have had 3mths. longer than the last time which i suppose is a bit of a bonus but i was hoping i would get even a year.It will be 8 mths. from my last treatment on the 4th. may.xuna.

harley profile image
harley

Well done Una, I attended Targets open day in Perth on Friday and the fantastic work you are doing was mentioned by a few ladies.

I took part in courage on the Catwalk on Sunday in aid of a brilliant local cancer charity, out of 24 ladies, 16 had previously had breast cancer, but 2 of us were OC sufferers, the gynae oncologists are delighted that we made it on to the radar for once.

In for more chemo Cisplatin/Paclitaxol tomorrow - 8 am till 7pm, oh joy!

Keep the chin up

Joanna

xxx

poleglass profile image
poleglass in reply to harley

Well done you! its all about keeping our chins up and trying to find positve moments to keep our spirits up. thank you all for your lovely supportive comments. Mr. Poots the health secretary and the health committee in N. ireland have agreed to do a photo shoot outside stormont parliment buidings on the 8th. may the first world ovarian cancer day to highlight the disease. I am delighted at this as well I have to say the m.l.as have been so supportive on the whole issue..

Whippit profile image
Whippit in reply to poleglass

Una, you've done so well. I just hope you can keep up the momentum. It's hard having lost your friends but hopefully friends here on the site can also give you lots of encouragement and support.

I hope the Onc visit goes well and you can continue without more treatment.

Sending love, hugs and best wishes.xxxx Annie

moominkat profile image
moominkat

Thinking of you and hope it's ok. Well done on the meeting. xxx Kath

citrine profile image
citrine

You've done such a brilliant job Una. Sorry to hear about your CA125. Will keep my fingers crossed for you on 30th.

Love Mary xx

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