I have never posted on here before but my darling sister has been fighting this horrendous disease for 2 years and has now come to the end of the road. I probably shouldn't fault the treatment she received but the length of time it took for her to get a diagnosis when she knew that there was a problem was wrong, she was having tests for 4 months before they diagnosed OC 3C, and when she had a recurrence only 6 months after her first lot of treatment (chemo/surgery/chemo/avastin) she was advised to watch and wait. It spread, she had an obstruction, more surgery, a stoma bag and now another obstruction which is inoperable, failing kidney function and too ill for more chemo and now nothing they can do. My family are devastated, my sister is in her late 50's but was extremely fit and healthy and this is all so wrong. I don't really know why I'm writing this but I feel the need to sound off to people that I think will understand. My sister is my best friend and I can't imagine my life without her, her children and grandchildren can't imagine life without her and our mum who is in her 80's doesn't know what has hit her. I think the frustration of being pretty certain that had she been diagnosed when she first had symptoms we wouldn't be where we are today but we can't go back in time and nothing can change what is inevitable. I'm sorry to burden you all with my sadness, but please all remain strong and don't take no for an answer when you think there is something wrong. Most women know their own bodies, my sister certainly did but no one listened and now she pays the price... We all as a family pay it with her.
Saddest day: I have never posted on here before... - My Ovacome
Saddest day
I'm so sorry. Xxx
Such a sad story, I'm so sorry for you and your family really heart breaking, my heart goes out to you all xox
your a,nger is warranted,and echoed many times on here but please try and think of all the times you have had with your sister,all the years you have shared,not just the now time,the fight is a hard one,the results unknown,we can only as friends,family and loved ones keep trying but understandably it doesnt mean anything at the moment the anger is justified,the hope is anguished but keep believing and keep faith....we are all as one and one as all...may you find solice in some place
I am so sorry to hear your sister is so ill, it is dreadful for you and her family and your Mother. Its tough when she was ill for a while before finally getting diagnosis. If its any consolation, over here in Ireland we are trying to make people more aware of Ovarian Cancer and if they feel something is amiss, go to their gp for check up and onward referral. We are also looking for guidlines for gps. If her doctor or consultant made an error then go talk to him and find out what exactly went wrong. It cant be fixed now but it might help them to be more careful in future. There is nothing I can say to make you feel bettter right now, you must be broken hearted. I hope your sister is comfortable and maybe now you make sure she is looked after in hospital and demand attention for her if she is in pain. Sending you hugs
So sorry to read your story, a similar thing happened to my lovely daughter aged 48, but with us it was our own fault as we put all the symptoms down to her age, possible start of menopause, tiredness, headaches etc. on hindsight she should have sought help sooner or I should have advised her to. I feel a lot of guilt as she only survived three years after diagnosis. I think this illness is relentless and I hate it. My faith has been completely shattered. Gillx
Hi Seren1942, please don't blame yourself. I've been doing that for a long time over my mum. I knew there was something wrong with her but dad and I couldn't get her to go to the Drs. When we finally did she only told half the story. It was only when her stomach and legs became so swollen she couldn't do anything anymore she got my dad to take her to a and e.
It took nearly a month to get a diagnosis and two weeks of that she was in hospital. The NHS around here isn't great. We lost her 6 weeks after diagnosis.
The amount of times I have thought what if but it doesn't change a thing.
I am sure of one thing and that is my mum loved me and would feel horrified that I blame myself. xx
I am so sorry for the hell you are all going through.
I never had a days illness except flue until August last year, I collapsed was constantly being sick. Blood pressure through the roof. Doctor came, asked to examine my stomach. Ultra sound scan, CT scan advised that it was probably cancer. Had total hysterectomy and part of stomach wall cut away as cancer sometimes hides there. Went back after all that to find out what treatment I would need. Was told they do not want to see me anymore as it was just a massive cyst size of a rugby ball. No I did not know it was there, thought I was getting fat because I like my food. The thing that surprised me, was that I was able to accept that my life was probably over. I made my will and planned my funeral , hey ho I am still here.
My thoughts are with you.
Love
Steadyteddy
I am so sorry I also had ages until the right GP diagnosed, but it could have been detected much earlier if I ha been aware of ovarian cancer, and maybe some of the healthcare professionals put less store in statistics that it doesn't usually affect women my age; 43. I am putting my anger and energy into raising awareness and funds for OC charities so that GPs can get more training and women know the signs...we are all told to check our breasts but not that symptoms like backache, pain during intercourse and bloating could be OC. I have two children under five and parents in their 80s and truly sympathise. It is very hard. I am so so sorry. Xxxx
way to go ! I applaud you !
I am appalled at 4 months delay in the diagnosis . Also wait and watch policy when recurrence in 6 months was all wrong . Drs were negligent . if nothing else write to Jeremy Hunt about this . Somebody somewhere need to do something about UK' s poor cancer management
Dear Newgirl
I was so sad reading your post. This is the most awful time for you and your family and it was a good thing to do to share with us. I hope it helps to have sympathy from people who know what you're all doing through.
Please try not to look back and feel anything could have been done differently or that you could have stopped this disease. It is indiscriminate about who it affects and often it is incurable before there are any palpable or visible symptoms.
I hope your sister has been made comfortable and this has given her precious time to enjoy with you and her family.
Keep in touch with us. I just wish there was more we could say to ease the pain of this difficult time for you. xx Annie
There is nothing I can say that will help but I wanted to send you my love. x
I don't really know what to say to comfort you at this time. God bless you all. Ann x
I feel very sad for you and your family.Death comes to us all, but when it can be prevented, we feel such a sense of injustice. Your sister is too young, añd I can feel your anger against those who failed to do their jobs properly.
My cancer was stage four when diagnosed, and the four arrogant GPs who continually fobbed me off have never apologised. What do they care? I sometimes wander?
I hope that your dear sister is offered peaceful palliative care during this very sad and traumatic time in her life, and that you and her family can be strong for her, and draw some comfort from all the special times together.She will always live on through her children and grandchildren.
Let us hope that in the future early diagnosis will be a priority wíth this dreadful disease.
Much love Jackie O xx
I am so sorry to read this. I can't really add anything more than the others have said apart from trying to make the rest of the time left with your sister as happy as possible especially for her. Try to keep the negative thoughts hidden until she is no longer with you and then perhaps use it as a positive and get involved in ensuring better diagnosis for others. Thinking of you all, Sheila
Hi new girl. Im sorry. I'm stage 4, grade 3 took months to diagnose etc etc. My sister is my best friend. I worry daily about leaving her and don't want her to be sad. I'm devastated just thinking about it. Please focus on the good times and relishing every moment you have with her now. I am certain that's what your sister would want. Love to you all, here if you need us. Xxx
I too, am so sorry that you find yourself in a situation that you have to find this forum. Nothing can be added to what others have said.
I would hope that in the future, when the time is right, you and your family can be advocates for your sister. Be her living legacy, by shouting out from the roof tops and banging a drum about GP training and women's awareness of this terrible desease. That's what I want from my family and friends if/when/ should the time arrive.
I would just like to also add my sympathy to you and your family at this very sad time. As you can see by all the messages you have had we are all here for you and know exactly what you are going through. We shall all go through this one day. It is a terrible disease and like all the others have said. We have to shout from the rooftops to get our voices heard not only for more awareness and training but more research in helping us all to live a bit longer.
Pat
Dear Newgirl. I am so very sorry about your dear sister. I feel angry on your behalf just as I first did 4 years ago on diagnosis at stage 3 PPC. Reading through this website makes you so aware that OC and PPC are just coming to the forefront in public awareness. Ovacare and Ovacome have been wonderful in promoting this awareness. We should all continue to fight on behalf of women like your sister who had such obvious symptoms. It is just not good enough to tell women that it is only usually found at stage 3 or 4 by which time it is invariably too late. The awareness must start at the GP who must not dismiss women from 50 on and glibly tell them they have IBS when they never had it before. Women must not take no for an answer.
My heart goes out to you too as is heartbreaking for relatives. I pray you will get courage to remain there for your sister. She is so lucky to have you
Deepest sympathy,there are no words to comfort your family,God bless we all thinking of you xxx
Thinking of you and your family, horrible time for you all. Xxxx
I just wanted to say how sorry I am and how I feel your pain. I lost my brave and amazing mum 7 weeks ago to this horrible disease so I can relate to all the emotions that go with it as do everyone else on here. At the moment I'm going through the real anger stage as it is so not fair. i take comfort in the little things though and told her how proud I was of her which she really appreciated as she felt she had given it her all. I also told her that I was never going to say she lost her battle with it as I don't believe she did. Cancer can take the body but it can't take the spirit and she is with me in everything I do. Just be there for your sister and hold her hand as she will just like to know you are with her xxx
Hi Newgirl30,I am so sorry to read your story.I think most of us if not all of us had delays in diagnosis.Anger is a very strong overpowering emotion at times and it does one good letting it spill over,I find visualising the face( of the G.P who wrongly diagnosed me ) on a cushion and thumping the dear life out of it ,helps me a lot,as well as screaming at it,strange. I know ,but I find it helps me a lot and then I feel able to cope with the emotion which should be priority,that is the emotion of love and acceptance.All of you need to embrace this moment now and make sure your sister has the best palliative,pain free care there is,enjoy what may be left.Im stage 4 advanced,one sister who is going through more than me emotionally.Big hug to you.x
I too just wanted to send you and your sister and family my deepest sympathy for what you are all going through. It does appear to be a complete lottery, and when I was diagnosed over 8 years ago at 45 with 3c the doctors appeared as shocked as I was - symptoms had been vague and non specific as they often are. I believe the stat is that GPs see just 4 cases of OC in their career so one of the reasons it tends not to be front of mind - all the more reason to find a cure for this wretched disease. I hope the palliative care your sister is given helps you all to spend precious time together, with memories to be treasured. Meryl x
I can only echo what all the others have said and say how very sorry I was to read your post. It is an awful and indiscriminate disease made worse by the fact it is so little understood even by doctors. At the moment I hope your sister is being kept as comfortable as possible and that you are able to spend time with her remembering your good times. I think there's a saying 'no one dies who lives on in the hearts of those they leave behind' and she will and is blessed to have had you as a sister.
Madeline x
Sisters are so precious and I know that if my sister was unwell and I was the one watching it would be unbearable, it's sometimes feels easier being the one with cancer than the one watching trying to be brave for yourself and everyone else. Take care my darling love and hugs Amanda xxx
It's totally understandable to feel angry. I think every woman on here is disappointed by the slow reaction of doctors when it comes to diagnosis. There are so many reasons for this. For me it was because I was considered too young for OC so must have indegestion, yet cancer doesn't discriminate against age, we are all vulnerable. Budgets in the NHS because as a company it is not viable, restricts doctors ability to refer.
The only advantage is how things have improved in terms of treatment. My aunt (not blood related) died from OC, she had a partial hysterectomy in the 1970's if she had received a TAH she may have lived to tell the tale but they missed a small part of a tumour, she left 8 children behind one of whom committed suicide.
It's important to stay positive for your family and your sister, you have obviously been given very sad news but you can make that time special, and maybe divert the negative energy into positive and raise awareness for the future of all women.
Best wishes
LA
Sending love and prayers to you and your family, I'm sorry you all have to feel this pain. Re live the good times, laugh and smile when you can, try not to let this time be all painful memories for you, they are the hardest to get rid of. XXX
So sorry to read your story I really feel for you an your family sending love to you all be strong for your mum she will really need you xxx
Thank you all so much for your kindness and for the love and support that you your messages send. My sister is home now as she wanted to spend what time she has left in her own home with her family looking after her. Although I have never posted on this site before I have been following some of your stories since my sister became ill and have been given hope and taken great comfort in knowing that some of you carry on for many years, fighting this awful disease. Sadly my sister is not to be one of the lucky ones but we all, as a family, have wonderful memories of a beautiful daughter, sister, mother, wife nanny and aunt and we will always love her with all of our hearts. I wish all of you as much good health as is possible, carry on fighting and supporting each other as you all give hope to so many people. Much love xxx
So sad to read your story, unfortunately it is one we hear all too often. I can only send my love, strength and best wishes to your family in these difficult times.
Lynne xxxx
Tears when I read your story,stay strong for your beloved sister cancer can never take away your precious memories together.sending love to you all x
Oh, Newgirl, I am so sorry for your sister and all of you. It does affect the whole family and the friends of those who have the dreaded diagnosis. It's unfortunate that oc is so silent at it's initial stages, and it certainly doesn't help when diagnosis/treatment is delayed. As you said, nothing you can do about it now........... except pray. I will say a prayer for your sister, you and your family, that God will give you all the strength you need at this tremendously sad time. My thoughts stay with you all........Judy
Im so sad for you and your family - I'm at a loss for words to try and console you.
Well done for posting this distressing and emotion message full of love and loss for your sister. I hope you get some tiny bit of hope from us Ovarian Cancer patients past and present.
thanks for your advice about staying strong - we need to hear it continuously - and question Everything
take care of yourself - I mean that
Sinead
ps i just saw that your sister is home, I hope you get to spend precious time with her. You and your sister are in our hearts and souls.
take care
Sinead
So very sorry for you and your family. As I read your post it occurred to me it could be my own sister writing those words which makes it all very real to me. We will all carry on the fight for ourselves and, more importantly, for our 'sisters' who go before us. Never be sorry for sharing yours and your sisters story. By sharing we are all stronger.
Thinking of you all
Love
Annette xxx
I'm so sorry to hear your story, unfortunately it is not uncommon which I know does not help. I recently met a lady and her mum who had lost there sister and daughter at a target ovarian cancer event. They also felt diagnosis took too long. They had decided to try and help raise awareness of the disease, which was bringing them comfort.
I am glad you have posted as to share your experience I hope will help you.
Best wishes
Sharon
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