The hello is to all you lovely ladies who have had/have Ovarian cancer, the goodbye is hopefully to my own ovarian cancer! I had my op on sept 5th in Leeds after being diagnosed at stage 1b in July . Following my total abdominal hysterectomy i was told it had been in both ovaries and was stage 2b (13cm in left 11cm in right) and had also got into into my bowel and pelvis but all had hopefully been removed. I am now awaiting my 2nd C125 and returned to work today (hurrah!- well not really but some sort of normality i guess lol). What has angered me most about this whole journey has been that i was unaware a smear test did NOT test for ovarian cancer, nor that the 'sign's' I had it could even be ovarian cancer - i simply thought they were 'middle age'. Yes, I am thankful every single day I am here- i have 3 children an adorable 1 yr old grandson a lovely partner and a life ahead of me, but how many women don't - simply because they do not know the symptoms could even be Ovarian cancer. I'm not bitter- honestly I am so greatful to my surgeon (Mr Hutson) and all his fantastic team- all I intend to do now is make as many women aware of what the signs are - many are not diagnosed til it's well advanced - we don't even have a support group in Bradford as i was told 'your lucky, most don't survive' so iv made a poster and put it on my facebook- so far its been shared by 88 people and not one had a clue of the signs or the fact it would a C125 test to detect it- everyone thought a smear tested everything. If any one would please share it i would be so greatful Sorry i can't upload it- must be bigger than the permitted 2500KB but if you want to look im 'Janette Oljanuk' on facebook please friend request me, and may i wish each and every single one of you the best on this journey we are taking and help get this message out to EVERY women xxxx
Hello and goodbye (hopefully) lol: The hello is... - My Ovacome
Hello and goodbye (hopefully) lol
Hello to you as well Janette!
And I hope it's goodbye to the cancer for you, me and as many affected ladies as possible.
I also felt very angry about the lack of awareness and posted on facebook about it on Dec 27th, which was exactly a year after my diagnosis.
Really hope everything goes well for you, will send a friend request.
Take care,
Love Kaz x x
Thank you Kaz, Think what annoyed me most was that i got no support at all - only met my CNS on 2 ocassions and both those times were at hospital consultation's- it felt like i was told 'yes you have cancer, this is when we are operating, right you've had it done and are ok now, now that's it'. I was scared witless i would not see Christmas!! It was like my world collapsed but i was trying to act 'normal' to hold my family together- now i just want more women to be aware of the signs and to be able to contact someone who has actually had it and can say 'I truly know how you feel' xxxx
'I do truly know how you feel' Jan, I was going to the gp's for nine months and being told I had ibs or water infections, in the end I (after researching my symptoms), went back to gp and said I think I've got ovarian cancer, was told I could have an ultrasound to 'put my mind at rest' while being made to feel a total hypochondriac!
Before I had the scan I was rushed in to A&E and told I did indeed have OVCA probably late stage, couldn't operate as tumour was too large and had four cycles of chemo then op followed by three more cycles of chemo.Makes me so angry as by then I was 3c and felt if I'd been taken seriously earlier, could have been an earlier stage.
Anyway onward and upward! doing ok now and like you,really want to make other women aware of the symptoms.
Saw on your FB page you've gone back to work, hope it went well but remember to take it easy, you've been through a lot and it takes time to feel better emotionally even more than physically, I'm still an emotional wreck!!
Love Kaz xx
Aw Thank you Kaz, I know, feel stupid in away cos when my son was 21 (he's 28 now) he had a brain tumor and was ill for some time before diagnosis and i was fobbed off with all sorts of differing piffle. I just knew there was something dreadfully wrong but still got labelled as a 'neurotic mother' til eventually he collapsed got rushed to hospital with suspected meningitis and was found with only 8 weeks to live if they didn't operate!!! Thankfully they did - but he had all sorts of complications. Now he's well and more or less back to 'normal' but i always swore id never be fobbed off again, and the stupid part is, that it was worse.. because i knew there was something really really wrong, because by that point id been bleeding a whole month, and yet i let myself be fobbed off by receptionist's who told me day after day there was no appointments 
I just wish i'd known that my symptoms could possibly be ovarian cancer as honestly I didn't have a clue. Yes, will def take it easy at work, tho as i work with 'vulnerable children' it can be bit difficult 
they do ground you tho and bring a huge smile to my face, thanks for replying and hope your good xx
Really does my head in, these doctors that label people as neurotic etc.... so glad you're son is better now, you've been through the mill with everything!!
And these receptionists that act as if they are so important and don't even try to fit you in grrrr... rant over!!
Glad work was good, and lovely the kids can make you smile!!
Take care xx
Hi Janette .... Its's maddening. I know that myself. It's 3 years almost since diagnosis now for me and I still feel the same as you do about awareness surrounding the disease. On the positive front, there is a regional Be Clear on Cancer campaign going on in the North West and The Borders following a successful local pilot. The advert is great and will go out about 10th Feb on TV in those areas. There'll be radio interviews, press interviews and the posters have been done. They're in Teal which is the colour most associated with Ovarian. I have Primary Peritoneal, a variant of Ovarian. Both Ovarian and Primary Peritoneal are hard diseases to live with and knowing that earlier diagnosis can save lives makes it all the harder to bear. I'm really glad you're doing your own thing to raise awareness. The more health professionals and women themselves know about this disease, the better more women can be helped. This has been a very supportive community for me with many wonderful women. It's been a lifeline so I hope you stay in touch. Tina x x
Thats great news about the posters and TV/Radio ad's as iv never seen anything before - guess thats why i didn't recognise the symptoms for 6 months, hopefully it will get the word out to more women How are you now? I only did the poster and tried to raise awareness as there seems so little by me. Yes will def keep in touch as there are some lovely ladies on here xxx
Hi Janette.... local authorities in the Merseyside and Cheshire Cancer Network should have ordered their posters to put up in doctors' surgeries by now. Doctors have been given notice through their weekly bulletins on the run up to the campaign so, hopefully, GP practice managers will put the posters up once they're received. The same for The Borders region. If the pilot is successful in these two regions, it's thought that the Be Clear Campaign Ovarian will go nationwide. I so hope so. I'm getting along. It's almost three years since diagnosis and though it was found I had disease progression in September and my local doctors thought I needed chemotherapy right away, my oncologist said I shouldn't just yet when I was referred back to her. Some doctors are following a 'watch and wait' regime. The aim is to give the patient a better quality of life because of having fewer treatments. I was in a wheelchair from around April of last year until November when I was referred to a hospice for specialist pain and bowel management. This meant that I could have the right pain relief and bowel medication to help me live a normal life. I get tired like a lot of women living with this and because of how the disease affects me, I do still get breakthrough pain. I think that where needed, women should be referred for specialist assessment sooner than most of them do at the moment. We're all different and some women don't really have pain and had no idea that they had anything wrong with them at diagnosis. Well Janette, I can well understand your feelings and I was so upset at first, I had psychotherapy to help me cope. Once I'd worked through all of that, I decided that I'd try to put all of that energy into helping other women which is what you're doing in your own way too. Ovacome sent me posters and after my sister printed off a list of GP surgeries in my Local Authority, the rest of the family delivered them to GP practices. That was two years ago and they are still up in my local surgeries when I made a point of calling in a few months ago. I don't use Facebook so maybe I should so I could put your poster up there for all my friends and family to see. Well, take good care ... Love Tina x x
Flipping heck Tina your so positive and have done great things putting up all those poster. Did you find it really traumatic regarding the bowel problem? I found that harder in away, you can talk to people about ovarian cancer and they show some empathy- but mention anything to do with bowel and you can see people visibly winch!! I looked on the be clear on cancer site, its obviously really new with lots yet to add but god if all that information is gathered then it will be phenominal!!The bit about warning GP's to expect an 'influx of women with bloating' following the start of the pilot did initially make me laugh (well, if you can't laugh you'l cry wont you! Lol) but worries me Doctors make become a bit blaize. anyway thanks for your reply and hope to chat soon love janette xx
Hi Janette .. Yes, bowels are a bit tapoo .. oops, a typo. Actually, for a lot of women with this disease, they're a real source of worry and stress. I've had five in all .. The last being a week long 'nil by mouth' in September. I was very upset because that's one of my worst fears. I don't cry much where I'm concerned any more but I did when the surgeon told me that if the bowels didn't work by themselves .. And then he just shook his head. It really depends where the blockage is I've been told. I now have a drainpipe bowel ..which is how my Specialst described it where it works by gravity rather than peristalsis. It's a long story but I'm so thankful to get help in that area. X x
lol- I'm gonna say that now - this 'tapoo' subject That's not cracking bout the surgeon shaking his Tina, My surgeon is lovely very calm, but doesn't give much away- after op he came to see me an said 'it's been a good day' - even though i was in a morphine haze and it hurt like hell i wanted to know everything- and it was only 2 weeks later when my own GP called (who didn't even know id had op til i rang my surgery as my wound had opened up and had been taping it together myself all weekend) panickingly asked me what follow up treatment they were doing as my cancer was 2b and had been in my bowel and pelvis and both ovaries!(I'd not been told this and was blindly blissful thinking it had only been in left and 1b) I know they see far worse cases day in day out- but to me this was 'My' life and i was devastated. Couple of my friends recently had breast cancer and the follow up and information they got was out of this world- just makes me sad I didn't seem to get same Thank God for this group eh! xxx
Yes, friends on on this site have helped so much. X x
Grade 2 also. Feel so fortunate. Lovely to hear from somebody else who is Great 2. So many on three and above.
I was also unaware that it could not be picked up by a smear. Thanks your Facebook message I have shared it with my friends to.
Hi Janette
Hope you are doing well, I was diagnosed in June 2013 at St James in Leeds with stage 4 high grade serous oc and was told it is incurable but they will try to control it for as long as possible. Had the usual 3 cycles of chemo then total debulking followed by 3 more cycles of chemo and now on Avastin. I agree with you that there is not enough information out there in the media re oc, all the adverts are aimed at Breast Cancer, prostrate and bowel and lung cancer but with Ovarian Cancer it is not usually picked up until it is too late for it to be cured as there are really very few symptoms and what symptoms there are could be put down to numerous things, I am 61 and just thought the weight loss was due to me having breast cancer the year before and looking after my mum who sadly passed with lung cancer.
The one thing that angered me was that when I was diagnosed with breast cancer they only did a ct scan of the breast and not a whole body scan, if a whole body scan had been done it would have been picked up 12 months earlier, I was told by the oncologist when diagnosed with oc that it is not normal practise to do a full scan. It is well known C that BC and OC can be linked so why no full scan of all lady parts, you are in the scanner anyway so a couple more seconds scanning could make a big difference. I must point out that the 2 cancers were not related. Since diagnosis I have had the best care I could possibly wish for from the team at St James and am now awaiting results on Monday of follow up ct scan. Good luck to all you ladies out there and we will keep fighting this.
Take care all of you
Love Pat xxx
Hi Pat .. I was at an Ovarian conference yesterday when your question sort of arose. Someone asked at the Ask the Experts session why women who have breast cancer are not told they have a higher risk of getting Ovarian too. The expert there said that some doctors at the moment feel that all women with breast cancer should be routinely tested for BRAC1/2 so those who have the gene can be followed up to be screened regularly for Ovarian. This may be possible as tests become easier to carry out and less expensive. At the moment, doing a genetic investigation is the equivalent of reading a novel as it takes a long time to read the printout and mistakes can be made but that situation's improving. It wouldn't help women like you though where the diseases are completely different. Not a lot is known about the genes which are causing these diseases and yours might be ones yet undiscovered. I see what you mean about being in the scan anyway. Love Tina x x
Hi Tina, Thank you for replying, I was tested when diagnosed with the breast cancer as it runs in the family but I was not carrying the BRAC genes so you may be right it could be a as yet to be discovered gene, but I still believe a full scan would be of benefit to everyone who is diagnosed with any type of cancer, it would certainly have been of great benefit to me. Take care Pat x
Hi Pat, I just don't know what to say except that my heart goes out to you and I am so truly sorry. I hope you get some positive news on Monday Iv recently read (I'm so sorry can't seem to find it now but il keep checking) that Addenbrokes hospital are trialling a new drug? maybe your consultant may know more? Iv been referred to a geneticist (bet that's spelt wrong :-)lol) as my mum and grandma had breast cancer - I too can't understand why they haven't scanned my upper body too as Il now prob have to go for a mammogram. St James's staff are lovely arn't they, (The pictures on the walls are worth a day out for too lol) My big worry is now for my daughters who are in their twenties and if I am carrying the BRCA1/2 iv passed it on, but I guess il deal with that problem when it arises, my son had a brain tumour 7 years ago when he was 21 half way through his degree and had all sorts of problems - but he's come good and the strength of the human spirit never fails to amaze me, sending you a big hug and lots of love Janette xxxxx
Hi Janet. I live near Bradford and have my check ups at leeds too so I'll look you up on Facebook. I'm just starting to try and increase awareness and fundraise. There is an ovarian cancer support group that meets at the Robert Ogden Macmillan centre at st James leeds if you phone them to find out the time. X x
Hi Suzie, Thank you il look that up- and good luck with your check ups, found a support group in Halifax but its only mornings, think I'm coping ok just really want to spread the 'warning sign's' to more women mainly, as not one person I know knew symptoms or test's etc xxx
Hi Janette and congratulations at reaching the end of the nightmare. Your so right about lack of awareness and we need to start shouting louder and longer so this message gets out there. I will FB to share your poster although have already got all my friends and family to share ovacome info last year, but a reminder never hurts. Go forth enjoy life don't look back xx
Thank you so much and yes so much to go onward and upward for now. it would be great if you could share it and I'm so going to shout loud on this one xxx
Good for you, Janette. When I got over my op and got back to feeling normal I trained as a ROCC with Ovacome ( ovacome.org.uk ) have a look on their website. They also have a record of support groups that may be near enough for you to travel to. They can help you with posters, credit-card-sized BEAT cards to distribute with the signs of OC, and other materials. It's great to have a supply to drop off at your local shops, salons, hairdressers, libraries etc and allows you to help other women to be aware of the signs and symptoms. I've made some info sheets and posters too, to help inform people, so if you want any, send me your email address in a PM and I'll send you the bits I've done as attachments. It all helps to spread the word!
All the best for your continuing good health
Love Wendy xx
Thank you Wendy that would be great, I did ask my McMillan nurse but she didn't know of any, and did find one in Halifax which is not too far for me to travel, alas its on a weekday morning and iv had to return to work, but il def look at the site you recommend thank you xx
You can actually click on to the "Ovacome" website (in the box at the top righthand side of this thread) this forum is actually the Ovacome charity support group love x G x
Well done Janette. Both on getting through the treatment successfully and for spreading the word. I'm amazed that so many women think that a smear test will detect ovarian cancer. And that includes some nurses!!!
Love Mary xx
Thank you Millie and best wishes to you too xxx
Hi Janette - just to say that I will be putting in a friend request on Facebook, so you know who I am (Helen Fletcher). I had a "borderline tumour" last year, which luckily hadn't spread, but got huge by the time it was removed along with a lot of other bits of me. I felt very alone just like you said in a later post- I got the same kind of "That's it now we've cut it out". Because I didn't need chemo, I almost got the attitude from some people "you didn't actually have cancer then, so what's your problem?"
Here's to a better year for us all! Helen x
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