Good article in Daily Mail Today

[HerThing]

I am not normally a big fan of the daily Mail, but a good article in there today. Coverage like this certainly raises the OC profile.

dailymail.co.uk/health/arti...

[Hidden]

Great thank you for the link best wishes x G x

[Hidden]

Many thanks, just read it. Sandra having 2nd night in hospital, may be out tomorrow depending on bloods.

What I don,t understand is that her temp rises above the 37.5 during the afternoon but then recedes to normal afterwards. At this rate we,ll be calling the hotline every day. Rgds Paul

[HerThing in reply to Hidden]

Hi Paul,

Let's hope they manage to keep it down and she is fine to come home. I can imagine the dilemma, but I guess if they say its best to call back everyday then thats the best thing to do.

Best wishes, hoping everything goes well.

Regards

Andy

[hil65wil in reply to Hidden]

Hi Paul

It was great to meet you both on the ward yesterday. Poor Sandra's temp rose again in the night so looks like another day in. Good company though together with Annette.

Hope she can go home tomorrow.

Hilary x

[ChrisH in reply to Hidden]

Hi Paul

My temperature keeps going over 37.5 for no obvious reason too. I was stuck in hospital for 9 days last September because it would jump up in a similar way. In the end, as they couldn't find any infections, they decided it was just one of those things. This time it went to 37.7 so they took me in and gave me antibiotics plus tons of tests. Again, they couldn't find any specific infection, just a raised CRP level, which indicates infection, and raised white cells.....considering this was 1 week after chemo I was gobsmacked! They have concluded my cancer causes my temp and blood levels to raise, and they discharged me.

I've consulted my clinical nurse, and we have agreed that unless I feel unwell, I only need to call the centre if my temp goes over 37.8. It could be worth a conversation with your oncology team to see if something similar is happening with Sandra

Chris

[Hidden]

Thanks for posting. She was lucky she had such an on the ball GP!

Monique

[nandi]

My GP at the time came to the same conclusion when I went with very similar symptoms. IBS and acid reflux. I had been worried about ovarian cancer and was so relieved to hear that it was not!!! 3 months later I started to bloat and was unable to eat ended up in hospital on a drip and diagnosed with PPC

Best wishes and thanks for posting.

[Whippit]

That's a great article. I wonder if it was replicated in other papers.

It explains a curious conversation I had at the Cancer Centre yesterday where we have been promoting Ovacome and our new Support Group throughout Ovarian Cancer Month. One lady, with Ovarian Cancer, sighed and said she was weary of all this fuss over Ovarian Cancer. She must've read that article as she said the paper are full of it, it's been on ads (TV?) and then she seemed mildly irritated by our display in The Velindre.

She did buy an Ovacome teal lapel pin though.

There's no accounting for how people react is there? lol xxxx Annie

[hil65wil in reply to Whippit]

Perhaps if this lady had had all this information beforehand she might have been more thankful. xxx

[Hidden in reply to Whippit]

I'm just sorry all 'this fuss' hadn't happened a long time ago!!! More women would have been better informed. I must admit things did move quickly for me. My GP referred me to BUPA but I couldn't get an appointment with Gastric specialist for 5 weeks so followed the NHS route.

[Hidden in reply to Whippit]

I would have felt like saying where have you seen it she must be in a different world than us!!

Noticed in the article it was professor Gabra who put some input in.

Regards Barbara.

[Whippit in reply to Hidden]

I wasn't quite sure what to say Barbara. Just cocked my head on one side, smiled, and gave her a free fabric teal ribbon that Ovacome give out. I noticed she'd put it on before leaving the hospital. I wonder whether anyone complained to her wearing a teal ribbon and making a fuss about ovarian cancer.

Thinking of Hani Gabra, I do encourage everyone to book one of his talks at the Hammersmith Hospital. I went along in September and it was inspiring. xx

[Hidden in reply to Whippit]

I remember you saying you had I hoped he might have said a bit more in the article. I like to read good bits. does he do talks regularly or are there certain months. I live in the Leicester area and would like to attend one. Where can I get information on this?

I take it you are back from you snowy holiday? Did you talk a I pad with you? I noticed these were the in things on holiday. I am about to have a gook luck at them tomorrow Only hope the John Lewis sales person is gentle with me mini or 9inch screen!!

Regards Barbara x

[Whippit in reply to Hidden]

Dear Barbara

You've mentioned so many interesting things.

Professor Hani Gabra is Director of Ovarian Cancer Action. You can find out about his talks from Abi Begho (nee Ajose-Adeogun) who is the Healthcare Project Manager at Ovarian Cancer Action

0207 380 1740 - or email [e-mail].

I have some information sheets on their talks so if you want to let me have your email address I could scan them and email them to you.I went to one in September. He has that rare ability to explain quite complicated things in a really accessible manner. You can also book a tour of the Ovarian Cancer Action Research Centre at the same time where you'll see how they use donated tissue to research potential cures.

I am indeed back from holiday and landed with a bit of a bump as it had been such a wonderful trip with the whole family. I usually use a MacBook Air as the I-Pad has very simple software and is somewhat restricted in what you can do with it. It has a terrible way of correcting your typing so if you're not careful you end up with crazy statements on the Ovacome pages. I've got an external wi-fi dongle because buying an I-Pad with an integral one costs an additional £100 and then you can only use it on that piece of equipment.

I've had two I-Pad's so far. The great plus for them I think is that you can load books and films as well as email and browse the internet and they're really portable - (but beware also really losable!). You can also splash out on an external wireless keypad which is a bonus if you're going to use it a lot.

Having used both the traditional I-Pad and the new mini version I'd say I'm more comfortable with the larger screen. Again depends how you're going to use it. I just invested in a couple of new handbags and have chosen ones that accommodate the I-Pad with its cover.

The only thing I'd say about John Lewis - and I'm a huge fan of theirs - you will get better after-sales service from an Apple Shop if you have one nearby. Buying a new piece of hardware always poses problems. The Apple Shop set it up for you before you leave the store so you have your mail connected, and are confident to use it. They are fantastic, and you can take it back any time for advice at their Genius Desk which is booked online.

Perhaps Cardiff is a good choice of shopping centre. The Apple Store is right next to John Lewis!

love Annie xxx

[Suzy]

If she had not had a private health insurance I fear she may still be being told that she has IBS and would probably not have started treatment yet .......though she was fortunate also to have a very good GP

[Hidden]

Great article. Thanks for posting.

[MargaretJ]

A good article but it did make it sound as if you only get fast tracked if you have private insurance. I was fast tracked by my GP and saw him on Tuesday, colorectal consultant Friday, CT scan the next Tuesday, Gynaecologist the next week, Oncologist the week after, started chemo the week after that. Within 5 weeks treatment had begun. i cannot fault the NHS!

[Whippit in reply to MargaretJ]

Dear Margaret, How I wish our NHS Trust were that efficient. My GP and I had a frank conversation about paying for a scan when he first suspected Ovarian Cancer. He told me the waiting time in Cardiff would be 6 weeks plus.

Neither of us feel that private care is our bag, but in the last two years I've paid for private care on two occasions. I paid £125 for an abdominal scan to fast-track my diagnosis and treatment for Ovarian Cancer.

I paid for an appointment with an opthalmic surgeon because my GP told me if he referred me to the NHS to have poisoned cysts removed from my eyelids that the local hospital would turf out the request. We went ahead with the referral with the additional comment that I was on chemotherapy at the time and needed surgery as my immune system was compromised.

That was 18 months ago. I paid approximately £400 to have the surgery done in the local Spire Hospital and was pain-free within a day or so. I would have been suffering still without that surgery. The referral is still in the system and I'm waiting with interest to see if I am invited for an NHS appointment for surgery which takes approximately 10 minutes under a local anaesthetic.

I cannot fault the NHS for the treatment they offer. I'm just critical that they're desperately under-funded, and perhaps abused, so the quality of the service is being compromised.

Thinking of NHS and you - how are you feeling? Hope you're OK with the radiotherapy. It does sound exhausting to have to travel every day but I hope it's doing the job for you.

xxx love Annie

[hil65wil]

I agree Margaret my experience almost identical to yours NHS fantastic so far as I am concerned.

The article was excellent though in all other respects and should help to raise awareness. Thanks for sharing link.

Hilary

[Hidden in reply to hil65wil]

I agree too, I was fast tracked by my GP so a bit misleading there....(I have no complaints) and when my husband enquired about going private at the hospital they advised against it.. I went to my GP on the Friday was at the hospital on the Monday. The comments were strange underneath this article one person said that articles like this freaks her out...(it wouldn't if she had OC it could save her life)

Love x G x

[MargaretJ in reply to hil65wil]

oh I do agree about the article's awareness raising.

[Whippit in reply to hil65wil]

I'm reading all these comments with great interest in case I feel one day I need to relocate to get the treatment I need. I shan't go quietly though! xx

[harley]

A brilliant article, thanks for sending through the link. Some of your stories about how quickly you were referred is interesting, it took 5 months, endoscopys, urine samples/ scan/ laproscopy before I was diagnosed with OC which later turned out to be PPC. I have to admit, I had no inkling and went along with the flow, sometimes even feeling so well I nearly cancelled appointments - glad I didnt and just shows the need for raising awareness of the symptoms, not only to women but our GP's.

I contacted my MSP who has brought a members motion to the Scottish Parliament about this being OC awareness month and so far it has received cross party support - I will keep you posted on developments.

Take care

Joanna

xx

[drdu in reply to harley]

Oh that's good Joanna. Glad someone in Scotland has done something. Well done.

Eileen xx

[Whippit in reply to harley]

Delighted something is happening in Scotland. According to the Pathfinder Study there is already something going on in Scotland under the 'Detect Cancer Early Programme' that you have going on there. I think there's every argument thought that this should be expanded and training for GPs made compulsory. As I understand it one of the UK-wide Ovarian Cancer charities has online training available for GPs. We should push for this to be obligatory and monitored. xx Annie

[drdu]

Yes, a good article to raise awareness. Thanks for that.

Eileen xx

[Madz]

Thanks for posting this link - all publicity is good.

Amanda xx

[harley]

Hi Eileen,

I havnt contacted Lord Saatchi yet but I did manage to watch his interview with Paxman, will word up a letter as soon as I find a few spare minutes. I did contact target ovarian cancer to see what they were doing in Scotland - heard nothing back - before contacting my MSP who was only too keen to take up the cudgel. I dont know about you, but I cant say I have noticed anything in the media about this being OC awareness month, perhaps I am reading the wrong papers.

Joanna

xx

[Whippit in reply to harley]

Wow, Radio 4 has had several articles about it, and a lot of local press coverage has been achieved. I read The Independent and I have to admit I haven't seen anything there but could have missed it.

Chris and I were rather surprised that even our Ovarian Oncologists and specialist nurses seemed unaware it was Ovarian Cancer Month. Now every member could do a bit of proseltysing before March 2014 to make sure your consultant and the Ovarian Oncology staff at your local hospital are aware of the month .... and are wearing the pin!!!!

xxx

[drdu in reply to harley]

No, I haven't seen anything in papers either. I have had no acknowledgment from Lord Saatchi - very disappointing indeed.

Eileen xx

[drdu in reply to harley]

Hi Harley.

Please see my reply to you. It is below, in the wrong place. Something wrong with the system, as I got no word of your message to me either - just found it by chance!

Eileen xx

[Jan76]

I too read the article in the mail and this is the 2nd time they have done one on OC .

It just does go to show the vital need to raise the awarness out there of the symptoms and how they can be mis diagnosed for IBS .

Jan xx