Hi Ladies, I got a reply from the Irish Cancer Society which misses my point entirely. I have been informed by email of the wonderful work they do with daffodil centres etc. So I duly replied now telling them yes their booklets on Ovarian Cancer are good but pointing out by the time you are handed theses booklets by your gynae nurse or find them in a support centre, it is too late, you already have a diagnosis.
I put it to them they need to inform women and gps about this deadly disease before it is too late to treat. I kind of challenged them to do something for Ovarian Cancer Day so will get back to you when and if I get a reply. Hope everyone is enjoying the bright day, it is nice to see the sun
Well done Suzuki! The more lobbying the better. Since my diagnosis I often think of the publicity that the number of road deaths get in Ireland each year which I think equates thereabouts to the numbers who die of ovarian cancer in Ireland each year. There seems to be a lot of money thrown at road safety annually and the topic appears to have champions (I think Gay Byrne was one!) but I see no such campaign for ovarian cancer. I am also tired of hearing that it is a 'silent' disease. My cancer certainly wasn't silent and I think better awareness and education would have caught it earlier. So I wonder is their a public figure who would take up our cause? If not a survivor of the disease then somebody who has lost somebody to the disease.
And what about the target audience….how do we raise awareness in women of a particular age who may be predisposed to the cancer? What about making a case for screening this subset of the population? At the very least a campaign would encourage women who fall within this criteria to request screening…. Why is there screening for breast and cervical but not ovarian? Maybe its time to rewrite the outcomes for women with ovarian cancer in Ireland, to construct a different reality; one of hope and new beginnings!
My miniature daffodils are smiling in my front garden 😊
Hi Chickpea2 my daffs are also smiling in the sun today. I wonder will I get a response from Irish Cancer Society a second time. the first reply was bla bla bla they fund this that and the other. I have found volunteers at daf centres very vague about stuff. I find Arc House fab and they have all the booklets you need after diagnosis but we need awareness before the thing gets out of control. Last night going to sleep was thinking of letting off Teal Balloons at Arc House in Cork or maybe the Ova care office in Cork to get people to listen and watch on Ovarian Cancer Day. So if the admins see this post they might find it a good idea or they might remove me from the site haha. I will be at the patient day in April in Cork so will make the suggestion again, If not then maybe Arc House might come on board, all we need are Teal Colour Balloons and a photographer from one of the papers. I have to say that without Ova Care I would feel so much alone. It is nice to connect with people who understand because they have been through treatment. The first coffee morning I attended was very emotional for me because for once I felt "these ladies are going through it or have been there" the same as me and I felt support!!!!!
Good on you Suzuki!!!! You're absolutely right about having a public awareness campaign to prevent ovarian cancer rather than telling women about the symptoms once they've got it!
I can see another campaigner in the making. Let us know what they say.
Hi Suzuki. I'm with you all the way and determined to make a difference on this. I'm going to reiterate a point I made in reply to a previous post about the new Ovacare and SOCK website.
It's great info but not raising awareness to facilitate early diagnosis. It's more important to inform women in time - not after diagnosis. Can information on signs and symptoms of ovaruan cancer be sent to all the women who are sent cervical screening letters?? How many thousands of women get these letters?? Can fliers go to ICA meeting?? Are there other target groups of women who we can inform?? Thinking outside the box a little..... Last year on world ovarian cancer day myself and my sister got dozens of mini cupcakes decorated with teal ribbons and sent them to work places with women - we asked that they read the Ovacare signs and symptoms flier before helping themselves to a cupcake - school, crèche, workplace and local Supervalue canteen - I hope that well over 100 women were informed that day.
It's not good enough to call ovarian cancer the silent killer - if I knew the symptoms I might have pushed harder for a pelvic ultrasound and might not have been diagnosed at stage 4. Sure - it's silent because the symptoms are vague - but also because women are not aware.
I'm going to contact SOCK now to ask for fliers for my gp surgery but while I will do this willingly - it maddens me that it's down to a few patients - often undergoing treatment and not in the best of health - to make this happen.
I agree with you entirely, I have not got a second reply from the Irish Cancer Society or any reply from the gp association. I agree why leave it to those who are have a diagnosis already and who are ill from treatment or undergoing any type of treatment. I heard recently of a lady who attended her doctor too late and subsequently died from Ovarian Cancer. This death could have been prevented had she had awareness. If she had gone to the doctor in time the story could have been different. Actually one of her nieces did a piece on word press about coming home to see her and by the time she got here, it was too late. But she was focusing on it from the loss of a well loved aunt. She also had it on word press ie her journey to visit her ill aunt, the loss of her aunt and also the fact she misses Cork. It was Cathy Tobin who wrote these eloquent words on Facebook and Wordpress and part of it was published on News to the Editor in one of last weeks Examiner. I might ask her would she consider doing a piece to mark Ovarian Cancer awareness day, Cathy is gone back to her family in Florida totally at a loss and broken hearted. Maybe google Cathy Tobin Wordpress to see the story, worth reading
What a small world - I read Cathys piece on how hard it is to leave Cork! Never realised the circumstances.
Cathys Mum is my first cousin, it was her Dads sister who died. she was only ill a few weeks, they were going to start treatment but she deteriorated. She first complained of back pain but then ended up in hospital.
We'll done for high lighting this major issue.As you said there's plenty of information on breast,prostate and lung cancer but little if any about Ovarian.Even if Each of us were to take our local town,village and put up posters in G.Ps,chemist,factory canteens and maybe an information evening,surely that would start getting the ball rolling.Personally I think the screening should be done during smear test.We'll keep up the good fight.x x
Got a very prompt reply from Derbhla at SOCK. Their leaflets are distributed by Inform to GP's that have an inform information stand in their practice. Inform are responsible for keeping the stands filled with the relevant leaflets.
Dearbhla at SOCK would be happy to send me leaflets directly so I asked for a bunch to place in my GP's practice and another bunch to have for my world ovarian cancer day plans!!
I shall also do the same, the whole point is get information out there before it is too late for some. Hope you are keeping well and able to get out a little in the bright weather
Hi All. Just reading the posts regarding ovarian cancer awareness. Ovacare, SOCK and the Emer Casey Foundation have met with the Irish Cancer Society in the past about the awareness and while they agreed to help in any ventures the charities would organise, they would not be the organisers. We have got them to publicise the day on their website and social media. It might be worth re-visiting this again with them. World Ovarian Cancer Day is on May 8th and the charities have had some initial discussions on awareness campaigns that could be run on the day. We can update you with this in the next week or so but if anyone has any suggestions also we are open to them. The SOCK awareness leaflets are in GP surgeries around the country. Regarding the smear taking, we have spoke with the NCCP also to include in their education of smear takers that the smear only screens for cervical cancer and not ovarian cancer as this is a common misconception amony women.
A nationwide campaign is really what is needed and should be our ultimate goal.
Just again to thank you for your input Ovacare and as fair is fair, if you need a patient story for Patient Information Day in April, I would be willing to take my turn if you still need someone Joan
I have also liked SOCKS facebook page and shared their video on symptoms, I got their email address and some information leaflets are winging their way to me. I shall leave some at my work place, local Library, gp practice which is across the other side of the city and if I have enough will also give some to local gp s in my immediate area. Yes we need a nationwide campaign so I have emailed Womens Way to remind them that Ovarian Cancer Day is in May and requested them to do a piece on OC awareness. I may have no success but I have tried. I will also try and contact the Cork papers if Ovacare has not done it already. Having said that, I was delighted to see that Ova Care forthcoming Patient Day is advertised in the Oncology Unit at the South Infirmary. So instead I brought my leaflets to Douglas Library and will also put poster up in the Public area where I work.
Yes thank you for that, I actually got a second reply from Irish Cancer Society and they more or less said they would be marking OC day with awareness publicity. I am please at the outcome. I have pointed out to them by the time their very informative booklets get to patients, they already have a diagnosis and we need to change this around. I would be happy to support anyone who has ideas to mark the day. Sadly that day some one will be dying from this disease and gynae oncologists will be operating on Ovarian Cancer patients on that day too, It is a sad world out there but I am lucky enough to be well enough to put my point accross
Hi Suzuki. As I only joined this site after my day in Cork I have just been reading all your back posts. You took the words right out of my mouth as the song says. Since I was diagnosed with PPC in 2011 I have phoned the Irish Cancer Society a number of times to ask why all their publicity goes to awareness of the more common forms of Cancer . As you rightly point out a booklet that is only handed to you after you are told you already at stage 3 or 4 OC or PPC is too little too late. They don't even refer to PPC. More women are diagnosed with breast cancer but more women die of OC .
One thing that really made me happy for women in the future was Sharon O'Toole's talk that day in Cork..She said that an awareness programme was to be rolled out to all GPs that women from fifties onward who complain of IBS symptoms should be tested for OC and similar cancers. I spent so many wasted years going to a GP who sent me away with all sorts of lotions and potions and even suggested I may be suffering from anxiety . I was offered an antidepressant for that. Since my diagnosis In fact my bowel problem is still being called IBS !! Not for much longer I hope.
Keep up the good work . Women need people like you to fly the flag for them. Good on you Suzuki. I tuned out of Ryan Tubridy to read your posts !!
HI MollyO, my husband showed me a piece in todays Irish Mail which brings a little sunshine. Breakthrough Cancer in collaboration with scientists in Vienna have done some study and there will be a new blood test for OC coming on stream next year. This is a relief as the current ca 125 cannot be reliant. I have some leaflets from SOCK from a lovely lady called Dearbhla and I do intend to roll them out in local surgeries my own surgery and libraries and maybe ladies groups in the area my own work place and my daughters workplace. I am mulling about going to the Awareness Day in Dublin on 8th if I can get day off. Aircoach is reliable way of travelling and I might come up on Thurs evening. Nothing planned yet as I need to see if I can get day off yet I will see on Monday. I am due to retire in May so have some time off coming to me. So far there is nothing planned here in Cork although I have made enquiries. I suppose retirement was something I thought I wouldnt see and I am finding it hard to get my head around it. Lots of emotions running around, I still think in my mind I am 21 haha which doesnt help matters. Unlike you I was lucky enough to be sent straight to a and e with a view to admittance which happened. I had probably had vague symptoms which I put down to stress and my mother was elderly and needed care so all went on back burner. I think this is what happens, we look after everyone except ourselves. I think there will be an announcement over the next few weeks regarding the guidelines being rolled out for gps etc. I got the standard reply from Irish Cancer Society and so I challlenged them until I got an answer. I think they may well do a promotion that day. If you are on facebook look for SOCK and like their page or send friend request. If you want leaflets I am sure they will get them to you as well. Keep well,
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