I always read the blogs on ovacome every day. I have only been a member since June this year but I must say its been the biggest support to me reading all the blogs and as you know I am always posting questions and all you ladies are always kind enough to give me the answers. What makes me so sad and often brings a tear to my eye is when I read about women in their 30`s getting this terrible disease especially if they have not yet had children. I know its terrible at any age, but when your older I think we can cope better but in your 30`s you still have the best part of your life to look forward to ie a young family going out and having fun.
I keep thinking why cant there be more press coverage about this and more knowledge of the symptoms so it can be spotted earlier on. I myself had no idea about ovarian cancer like many others I just put it down to IBS and carried on. Lets all put our thinking caps on and push for more information to be put out there for women not just post menopausal but women everywhere. Thank you I have got that off my chest now.
Have a lovely week everyone the sun is shining to day and will continue for a few days more.
Love and Hugs Babs x x x x
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doreenharwood
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Hi Babs,
Both OvaCome and Target Ovarian Cancer do their best to raise awareness on OC ...it is a case of getting involved with these charities..they both provide literature (free)to hand out or to target specific places ie GP waiting rooms - large stores - chemists - hospital - waiting rooms etc...I took a stack of leaflets when I went for my mammogram and gave a mini talk to the ladies waiting there... I also took some to M & S as I figured they had a large amount of women working there..they were only too happy to place them in their staff rooms and ladies toilets...as many stores like these are good to target..also a good place to leave them is when you go for a smear test now I know we don't have a smear now..but popping in to ask if they would give them out to the ladies as it will make them aware that there is no screening for OC..any store any place of work any place even dentists this is how we raise awareness the charities provide the leaflets even posters or sell OvaCome teal badges every little helps in this.....I always carry leaflets in my handbag and give a leaflet to nearly everyone I meet ..sorry I went on a bit..lots of love x G x
Wow, I'm impressed with all these ideas Gwyn. I'll get some leaflets and go about distributing them here in Cardiff. What a fantastic idea as it can be done whilst you're getting on with the daily routines of life. I love that idea and will give it a try. xx Annie
These charities provide the recourses...we just need to use them..we don't even have to be a ROCC volunteer or anything else..most of us are not in a good place to do much more.. Once these leaflets have been delivered I point out that if they run out they can send for more..job done..I forgot to mention Chemists/Gym clubs/ toddler groups even if the chances of younger adults are lower most people have mums, grandma's. aunties, cousins etc..it is the case of keeping an eye on each other even men's groups are good as husbands if they are aware will keep an eye on their wives or mums...
The founder of OvaCome was only thirty one when she got OC and was so shocked that there was very little support that she started this charity I find this amazing..I have written a poem as a tribute to her and the team and will post it soon..the poem I posted last weekend had so many problems in posting I don't think many read it... I decided to wait for things to settle before posting the tribute...as it is one that I hope will be read in recognition to Sarah and OvaCome...love x G x
I forgot to mention that if you speak to the manager in one of these places.. They might be keen to have a charity event to raise awareness or funds.. It is good publicity for them.. Particularly in March OC awareness month... but if it is all too much.It is easy to raise awareness day by day with everyday people you meet ..it has become a way of life to me...love x G x
I feel exactly the same as you. The site has given me so much support since I joined just about a year before you. It's a place you can still express your worries that would elsewhere become tedious. It's good because I can share my worries on this site and be my other self with my family and friends so that when I'm with them I can concentrate on other things. I don't think I could have done that without this site.
I know you have a really busy job as a waitress and how you're managing to hold that down whilst going to chemotherapy is anyone's guess. I love your gutsy approach to this disease and all your blogs.
Thinking of spreading the word about Ovarian cancer, the main problem is that many of us just don't have any symptoms at all until it's too late. The only reason I became aware was because I had masses of huge tumours that eventually pressed on the bowel giving me a pain that developed from a niggle to an excruciating agony within 5 weeks. Having said that the UK is about the worst place in the developed world to be diagnosed with ovarian cancer. I'm guessing that other countries have screening in place that, whilst it doesn't detect everyone with ovarian cancer, at least detects those of us whose cancer is accompanied by rising CA125 counts. I get quite frustrated that research always seems to be looking for a 'catch all' solution. 'If it works for some why not offer it?' would be my mantra.
I think it's up to us to do what we can to help spread the word and I'm aware that you can volunteer for Ovacome and become a regional representative so it's worth looking at that option from the main page by clicking on volunteering opportunities. I've got the pack and it's only a couple of hours p.w. absolute max working from home which isn't a problem for me. The other way I've heard about is to get involved with the Voices Ovarian Cancer Charity who are also looking for volunteers. None of it is arduous. I've only recently been asked by Voices to receive a cheque at a hospital not too far away on their behalf. It's little things that that which might make a difference and give us an opportunity to say a few words to raise awareness of Ovarian Cancer. I think it's also good for us to get out and about to be noticed and challenge some of the misconceptions about having an incurable disease. Some of my friends, and indeed my management at work, seemed almost to write me off when I was diagnosed. We really need to challenge those perceptions as the condition takes many different forms. Whilst there are some who are really unlucky and are resistant to treatment many of us continue to look well and remain active for a good long time and we still have something to contribute to the world.
I admire your gutsy approach to this condition. I really hope you've resolved the difficulty of having such a physically challenging job. I'm on 3 weeks' leave and just about to retire so I'm starting to look for part-time work. Keeping afloat financially is going to be quite a challenge as the state pension age rises. I'm 60 years in January and was born 4 days too late to claim my pension at that age. I have to wait until I'm 62 years and 10 months and have to think about how I'm going to pile up some savings now to keep me going when I'm no longer able to earn a living. It's going to get worse as the state pension age rises. I think it's something we could also lobby for - whilst people are statistically healthier longer there are people who will develop critical illnesses before their retirement age and the existing disability allowances just don't cover the gap.
I agree with your worries for women diagnosed at an early age. I think there are special events organised by Ovacome for women with an early diagnosis which must be a support with all the problems they face. I think Gemma Gibbons' Silver Medal achievement and the tribute to her Mum last week was a great comfort to all of us who face leaving loved ones behind. It reminded me that we will live on in the hearts and minds of our nearest and dearest and that our memory can still inspire, support and comfort even if we no longer have an earthly presence.
I love your blogs and look on every day to see if you've posted something new. xx Annie
I had an email from Target Ovarian Cancer who said that the government is going to include OC in their Be Clear on Cancer campaign, which I thought was really positive.
Hi all . Sue that is good the goverment are doing this . It is so important to raise awareness although i didnt have any (or maybe i did but soo vague didnt think) apart from a couple weeks of abdominal pain . Although as per mammogram i think ca125 should be routine after a certain age
Ally x
Dear Babs
Just look at all the great information and ideas your kind and unselfish blog attracted!
I wish that more leaflets included one of the symptons often left out - pain on lovemaking. Lots of the other symptons can be put down to many other things, but not so many other things for lovemaking. This is a fairly common side affect, apparently.
Hi Solange...I am wondering now if it affects memory...I have no idea what you are talking about!!!....(only kidding) my husband assures me he knows exactly... what you are talking about..LOL nudge, nudge,wink,wink..I am glad you put apparently this is one thing that I have put down to age...haha.....along with headaches.... oops!! ( am I giving too much away? Tee hee love x G x
Hi all! It's great that we are talking about this. I have my BEAT cards with me and hand out lots. Look at the Ovacome website and get the number to ring from there. Ruth Griggs is the publicity and information manager. They will send you BEAT credit-sized cards and posters of different sizes. those of us who are ROCCs do talks and publicity on radio and newspapers, but local newspapers are often looking for women to feature about OC awareness, especially during March. You could try contacting them if you feel well enough. Warning though .... They often want to take a photo of you, so you need to feel up to it! I have learned some ideas from all of you, so thanks all. I'll be ordering more cards and posters and getting out there again! Thanks, Babs, for another brill idea!
u ladies are wonderful, i think its a fantastic idea to spreading the word ab the symptons of oc... im going to get some leaflets and take them to some of the places u suggested.
Well done you ...glad you are motivated..lots of love x G x
Hi Babs,
Tonight on the television on Granada Reports.... they had a lady on talking about OC to raise awareness..."Eilish Colclough" was talking about OC as well as "Sharon Tate" an Oncologist that works with "Target Ovarian Cancer" charity...I met Eilish and Sharon when I went to an awareness day last November ..Eilish has OC and she works tirelessly ie...lobbying MPs talking to the press,newspapers and television etc...they were talking about the breakthrough that they have had with the government to raise awareness I just thought you'd like to know..
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This is a fairly common side affect, apparently.
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