The importance of raising awareness

[HerThing]

Some of you will remember me from being here a lot while my beautiful wife Angie faced life with OC. Sadly, so many of the lovely people I used to talk to, like Angie, are no longer here; having succumbed to the devastating effects of this horrible disease.

So many others will not remember me though as they weren't here at that time and that is simply a reality that makes me so sad.

When Angie was diagnosed in Dec 2012, neither she nor I had even heard of OC. For months before she experienced difficulty eating. She felt bloated and full after even the smallest of meals. Her periods were haphazard at best and at night she was constantly awakened by a need for the loo and plagued by hot sweats and flushes. At 47 years old, she put all these symptoms down to the early onset of menopause... if only she had known. While I suggested she go to the docs, I didn't insist. Why would I? I am a bloke and don't understand these things. She would just say, "I'm not. He'll only put me on hormone replacement therapy and I don't want that. It'll pass sooner or later." I just let it go; it was woman trouble... If only I had known.

So, If only WE had known, Angie might have been diagnosed so much sooner, but the problem doesn't end there. She finally sought medical help only when she noticed a lump in her abdomen and was in severe discomfort. The GP she saw assumed she had a hernia and ordered an ultrasound which would take a couple of weeks! This was in October and as time went by Angie's health deteriorated. She was finally diagnosed on Dec 10th, but only after the intervention of a second GP who recognised the symptoms for what they were. If only the first GP had realised what was presented to him.

Having read the above, you can understand why I feel raising awareness of OC symptoms is so crucial; not just among the public, but among health professionals too. The tragedy is that Angie's experience is far from unique. I will bet a pound to a penny that many of you have a similar story to tell.

I lost Angie on boxing day 2014, 2 years, 2 weeks and 2 days from her diagnosis, but before she died, thanks to this forum, we met some wonderful and inspirational people. People who not only supported us through the cancer journey, but became fast friends... family even. Not least of them was Gill Harler who recently posted about the awareness work we have been involved in with the little teal handbag cards. we are so proud of them as they are a great compliment to the awareness tools like symptom checker on Ovacomes website. There can never be too much material out there and Gill has been delighted that so many of you have been in touch with her since her post to help distributing them. To make it easier for everyone who wants to help, I have created a quick contact form on Gill's website. Just enter your details and we will send some handbags to you to place in your local area. gillharlerfund.org/help-us.php

Awareness is so important and doing my bit has been a comfort. I miss my Angie terribly, but I know she would encourage me to do all I can to help other women and their families avoid what she had to, and you all still endure. My love and best wishes to each and every one of you.

Hugs

Andy x

[Katmal-UK]

Hi Andy I am so sorry for your loss but I just wanted to say what a brilliant post. I salute you for carrying on in your endeavours to raise awareness. Simply, Thank you . Kathy xx

[HerThing in reply to Katmal-UK]

Hi Kathy,

The salute is really from me to all you ladies who face this cruel disease day in day out. You are all amazing. Meeting Gill and Anton, along with others, was a great help to both Angie and I as together we took on OC. She and Gill were so much alike in their attitude and determination so it was a huge comfort when Gill asked me to get involved with the work of her Fund. Awareness is vital and I guarantee you one thing... either there will be a cure found before, or I will be shouting from the top of my lungs about the symptoms of OC until the day I die. Andy x

[HogwartsDK]

Andy,

Well done on an amazing post. I am so sorry about Angie. I couldn't agree with you more! I am one of the lucky ones that got diagnosed early because of a great GP who gave me a physical check when I complained of the most basic symptoms. I didn't have any pain, I had some digestive symptoms and my tummy was bigger than normal but I just thought I was putting on a few pounds! The GP felt the mass immediately when he felt my tummy and sent me straight to hospital! I was diagnosed stage 1, had 2 surgeries and Chemo and happily out the other side 6 months later! I don't know what the future holds but I do know that I have been given the best chance possible because of the vigilance of my GP!

The education of GPS is a critical step in the diagnosis of OC early in order to give women diagnosed with OC the best chance possible. Gill is doing a great job getting the word out and I am sure that many women can be saved and helped as a result!

Thanks again for the great post.

Dx

[HerThing in reply to HogwartsDK]

Oh D, how right you are... every woman deserves the best chance possible and awareness among GP's is crucial to that. But that is also only useful if women present with symptoms earlier, so awareness is a two pronged challenge. You're right too about Gill, she is amazing and producing a quarter of a million of the little teal handbags is no mean feat especially facing the health problems she does. Thanks for replying to my post, and I wish you a very long and happy remission. Andy X

[Hidden]

Hi Andy, I believe some of these bags are here in Ireland at the moment and hopefully I expect to lay my hands on some and will promote awareness with them, Guidelines on OC detection have already been rolled out to our family doctors here since May or earlier. Yes they have demanded more acess to ultra sounds and have got them, So slowly people are become more aware but we must never stop promoting awareness.

[HerThing in reply to Hidden]

Hi Su.

Yes I believe some have made their way over the water to Ireland. In fact I also know some of them have got as far as Australia! It is good to know that over there GP's are becoming more aware as this is so crucial to detecting things earlier. I think in Dorset, thanks to Gill's efforts, the first presentation of symptoms now leads to immediate CA125 test and ultrasound as part of a pilot scheme. How great if this was rolled out nationally eh? If you want to get hold of some bags just let us know and we can send you some. I have found, hairdressers, beauticians, nail bars etc a great place to put them in front of women as well as surgeries and waiting rooms. Thanks for replying to my post, and you're right... we must never stop promoting awareness. Andy x

gillharlerfund.org/help-us.php

[kittie in reply to HerThing]

Hi Andy ,I was honoured to get some boxes of your handbags ,posters and a beautiful pin . I am in Ireland and I have promised Suzuki some of the handbags and posters . I will be bringing a couple of boxes and some posters with me when I travel to Cork for the Ovacare Coffee Morning on the 15th. The others have already started traveling around Ireland as I am giving some to family to pass around .I also put a box and posters in my GPs surgery and I am leaving some in my hospital next week when I am in . So thank you so much. Kittie.

[HerThing in reply to kittie]

Hi Kittie, Gill told me she had posted some over to you and she was thrilled to have them over there. The further we can spread our message the more worthwhile our project is. Thanks for joining in. Andy x

[Lily-Anne]

Hi Andy

I think raising awareness in the GP surgeries is important. I am only the second OC patient my GP has seen in 12 years but her quick thinking saw me diagnosed quickly. You may remember as it was a similar time to your wife. However if my first GP had recognised the signs I may have had a different story. Nine wasted months. Good luck with your campaign and best wishes to you

LA

[HerThing in reply to Lily-Anne]

Hi Lily-Anne, Yes I do remember and you raise an important point. Many GP's will only see maybe one or two cases of OC in their entire career so there is hardly any wonder it is often missed. Only by raising this issue will we be able to overcome this obstacle to earlier diagnosis. One of the things I have put my name forward for in my own surgery is talking to groups of medical students when they attend the practice. I have only done this once so far, but it was well received and I keep my fingers crossed that these GP's of the future will be better informed as a result.

I do hope you are currently well and my very best wishes to you too. Thanks for your comment. Andy X

[Sunfleury-UK in reply to HerThing]

- for anyone wanting to raise awareness amongst GPs etc please be aware of this accredited training module, tools and info... targetovariancancer.org.uk/... xxx

[HerThing in reply to Sunfleury-UK]

Thanks for the excellent link. When I next speak with more trainee GP's I will certainly be sure to share the information. Andy x

[Sunfleury-UK in reply to HerThing]

It's a pleasure Andy, I know that many many GPs have completed the training but anything we can do to encourage the remainder to do so is vital! On a really simple level, TOC have pens with a pull out OVCA pathway for health professionals which we can order and give out... My GP was incredibly informed and ahead of the curve when I was first seen- mainly because of his experience with another patient. I gave him a few pens though and he passed them on to his colleagues! Very best wishes and huge thanks to you for all your amazing efforts Sx

[Lyndy]

Great work Andy..all power to you in this drive to raise awareness it is soooo important xx L

[HerThing in reply to Lyndy]

Thanks Lyndy. Gill and I along with all involved are so proud of our idea and we know they are making a difference. Thanks for your comment, Andy X

[LittleSan]

What a wonderful tribute to your beloved Angle. Raising awareness is absolutely essential. I gave a talk the other night to a ladies group I belong to. No-one was aware of the symptoms of OC. Of the sixteen ladies I spoke to (with the help of literature from Ovacome and Target Ovarian Cancer) 10 were going to speak to their daughters, one was going to bring it up in the discussion group she goes to, two took posters to put in their place of work. And so the word spreads......

Sandra x

[HerThing in reply to LittleSan]

Well done you. All awareness raising helps even if its just speaking to friends and neighbours. The beauty about Gill's little handbag cards is that they are ideal for people to hang onto by slipping into a purse as a constant reminder. We know thousands of women are now carrying these little beauties wherever they go. We will get there, by using whatever we can to get the message out.

Thanks for replying. Andy x

[dryden1]

Andy, The love you had for Angie just oozes from your post and I am so dreadfully sorry for your loss, they do say that grief is the price you pay for love in your life and you are honouring Angie,s life by been involved in raising awareness of this horrid -disease I am sure she would be very, very proud of you.

[HerThing in reply to dryden1]

Aw what a nice thing to say and you are so right. Losing Angie is the hardest thing I have ever had to deal with and its been tough, but she would be so annoyed at me if I ever gave up. Angie had a saying... I might have cancer but it hasn't got me! She lived every day her own way despite failing health and in doing so she beat her cancer; it never once owned her. Well in Angie's honour, while I feel the grief it caused, it won't get me either; in that way I'll beat it too.

Hugs

Andy x

[Yoshbosh]

Hi Andy, I only joined the forum earlier this year, but I read Gill's post and thought it was such a wonderful idea. You've done a great job of raising awareness, and I am so, so sorry that Angie isn't here to see your hard work, but I'm sure she would be proud of you. Yosh x

[HerThing in reply to Yoshbosh]

Aw thank you for such a lovely comment, Yosh. Yeah we are all so proud of the little bags and I know if Angie had lived longer she would have been right behind us... especially behind me when getting things wrong. Right behind me, kicking my butt! lol.

Hugs

Andy x

[Gilly49]

Hi Andy, we met here on Ovacome and became great friends and you and Angie took the trouble to travel all the way to Dorset so we could meet face to face. I could never have got this far with this awareness project without you and your brilliant ideas. We have a great bunch of people helping us also, we are a team with the same aim, to raise awareness of this hideous disease.

You have done this whilst still grieving for Angie and she would be so so proud of you and all you have achieved. I know that when I'm no longer here you will still be championing for us women and on behalf of us all, thank you so much.

Thank you to all the amazing women on here who are also doing so much to raise awareness and hopefully one day we will get the recognition we rightfully deserve. Also thank you so much to the women who asked for the free handbags and are distributing them wherever they think appropriate.

Wishing everyone the very best, live you life to the full and have fun. Love Gilly xxxxx

[HerThing in reply to Gilly49]

Hi Gill,

Listen to you. Praising me, praising others who have helped. It's time for you to recognise that YOU are the driving force behind this idea lol. I know you dislike the attention, but be proud of yourself. You are an inspiration to others whether you like it or not lol. Despite your poor health you have been a champion for women to get a better deal when faced with this disease and I applaud you for that. You are a very special friend to me, just as you were to Angie and for that I thank you. At my lowest point, you and Anton were there when so many others were not and you gave me something good to focus on. That has dragged me out of that bad place and given me the determination to do more.

Bless you my very special friend... my partner in crime haha.

Hugs

Andy x

[Gilly49 in reply to HerThing]

Yup, Partner in crime,😂. Just shows what Ovacome's all about. The support has been a two way deal believe me, so thank you. Hugs from me xxx

[Howick01]

Hi Andy -so sorry for your loss It is so good that you are continuing to raise awareness.We have tried to do this in our area this year with help from the NHS believe it or not!!

Our CNS believed this has actually helped with diagnosis.

Take care x

[HerThing in reply to Howick01]

Good for you, all awareness is important and the more people across the country who get involved the better. It's great that in your area you have got the NHS helping and that your CNS believes your efforts have been effective. Once affected by this disease, it soon be comes clear that earlier diagnosis would give so many women a better chance, doesn't it?

Best wishes to you and thank you for your reply.

Andy x

[baxbird]

Just a quick post to say thank you to you Andy and Gilly.

Andy, I followed your posts as you sort to help Angie and others on this forum. I am thankful that you continue to do so to this day, Angie would so proud of you.

I have received my delivery of boxes in this part of Hampshire and my goodness if this village don't know about OC by now they are blind!

If I need to can I resupply when I gave sourced an area to hit?

All the best

Dawn xx

[HerThing in reply to baxbird]

Hey Dawn, How lovely to hear from you I do hope you are well. That made me laugh, 'they must be blind' lol. It is brill that you have managed to get the cards out there because in doing so someone in your area might well have their life saved because of reading one. Of course you can resupply when you need to and feel able. There is now a quick contact form on the website for just this purpose. Thank you so much for your help. Gill and I are really grateful.

Andy x

[citrine]

Hi Andy

It's good to hear from you again.

Thank you so much for your post and everything that you have done to help raise awareness.

Mary xx

[HerThing in reply to citrine]

Hi Mary,

It is so nice to hear from you; I do hope you are well. Raising awareness and especially being involved with Gill's fund has been a wonderful way for me to get through losing Angie. I will keep shouting about it until I have no breath left lol.

Hugs

Andy x

[Maryblackcat]

Thank you for this incredible post, Andy and for the wonderful work you're continuing to do. Am new to forum but absolutely driven to raise awareness of OC in any way I can especially as when diagnosed in August I was already stage 4 which I know is sadly all too common. But this makes me more determined to spread the word. Tried to order thru link just now but entering that code bit wouldn't work but think it's because am on my phone so will try again on computer.

Andy I am so so sorry for you losing Angie. Sending you positive energy, hugs and love and thank you again for the legacy you've built.

[HerThing in reply to Maryblackcat]

Hi Mary,

It makes me sad to find you here; i would much rather you never needed to find us, but this forum is an incredible place to chat with people who really understand what you are going through. I am assuming you are currently in treatment and do hope that is going well. If you have any worries or questions do ask them here, there is a lot of experience and always someone reading who is happy to help according to their knowledge.

If you are Sue in Stockport... don't worry, I have your details (twice lol) and will be winging some of the cards over to you asap. The most important thing for now though is concentrating on you and getting through the chemo. I wish you well and hope that the treatment kicks the cancer in to touch.

Thanks for getting in touch, hugs

Andy x

[Maryblackcat in reply to HerThing]

Hi Andy

Thanks for your kind reply.

Yes, am in treatment at Christies in Manchester - having weekly chemo and only five sessions in so it's very early days but I am hopeful and positive....I just take each day as it comes and places like this give me a lot of encouragement.

I'm not Sue, no, but managed to put through my details on my laptop. No rush with getting things to me but I am certainly hoping to raise awareness at my local surgery where there are definitely no posters up!

Thank you so much again for all you are doing! I am sure Angie is so, so proud of you.

hugs to you

Mary x

[Barlow1951]

Hi Andy, thanks for your inspirational post. Just wanted to tell you I gave out some handbags to friends on Tuesday morning and one of them immediately asked if I could give her 30 to distribute at her next WI meeting, so that was a great response.

All the best to you and Gilly in your wonderful efforts to raise awareness through the delightful handbags, pins and posters, Barbara

[Mrs_Atko]

Thank you for posting Andy - i only joined this forum this year after jumping all over my own symptoms and paying to have a scan privately back in June, because otherwise, i'd still be sitting here with 'it' growing inside me. That decision, i believe, saved my life!

I'm so sorry you lost your beloved Angie, but I'm sure she would be super proud with the continued work you are doing to raise OC awareness. Well done you.

Jemima xx

[Solange]

So nice to hear from you, Andy. I've often wondered how you are faring without your beloved Angie. I admire your determination to raise awareness of this horrible disease. Thank you.

Love, Solange xxx

[mummybear59]

Hi Andy. So lovely to hear from you. If you remember I was diagnosed about the same time as Angie and your posts have always been kind and helpful. I'm doing well after third line chemo earlier this year and now on Olaparib parp inhibitor. Hoping it will give me a long break before chemo again. I'm on holiday at the mo with my daughter and granddaughter in the Dolomites in Italy but will have a good look at your link when I get home.

Take care of yourself

Xxx