I was diagnosed with ovarian CA 18 months ago. It actually was more serious than that as my ovaries and fallopian tubes had been removed years earlier due to benign polyps,
It is now diagnosed as stage 4 endometrial CA. I have undergone 6 months of chemo combined with another 6 months of Avastin. Next I had major surgery to debulk the main tumour and some residual nodes.
My family are so supportive and say how well I am coping. It's true - I don't make a big fuss and I think to myself, what will be, will be. I'm a very young 72 year old (OMG I can't believe it!). I have no pain or symptoms at this stage.
Last night I woke up at 2am in floods of tears. It finally hit me. My darling husband Dan held me and we talked about it all. We talked about our own mothers who missed all that has happened in our lives after their deaths.
That is what worries me the most - I will miss all the adventures, changes in the lives of our family, friends and the world in particular.
Big hugs from you mate in Australia.
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Jenjill47
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Thank you Mary for responding to me. Yes, you have been through a lot too! So much in such a short time. It must be confusing. How are you coping with the chemo? Are you having any problems with COVID restrictions?
One of my worst fears, is that I'll end up with a colostomy or ileostomy.
It is strange how that 2am/3am time slot brings out the worst fears. Everything seems so dark and onerous. I tell myself to get out of bed and watch some TV but the news is so darn depressing right now and I don't have the concentration to start on a movie!!!
Mary I hope you have received some answers and please let me know how you are going!
Big hugs from the other side of the planet,
Jill
PS: I love NY - I had a ball when I visited a long time ago!
Dear Mary, I'm sorry you are feeling down. By the time you get this, I hope you are feeling better.
No we are not having COVID issues in our state either. (S.Aust). Before I start my next chemo I have to have a cardiac echo gramme. Another thing to worry about! Also the ophthalmologist as my vision has changed since chemo - apparently a cataract.
A very big hug, to you, too! What a beautiful picture!
Processing the whole thing is not easy and it doesn't always happen fast and it is also not linear nor it is consistent. The ups and downs are also part of this journey.
Perhaps, as you feel, our worst fears is how our loved ones will feel and become after our departure.
This is the circle of life that we have also experienced when we lost our dearest ones. We very much hope and we pray that they'll be alright. Life itself will keep them busy. Our memories will always be with them and will give them the strength that they need.
You are so beautiful. Keep that head high and be proud of what you have achieved with and for your family.
One day at a time and every day is a gift! A gift to love and to hold those that matters to us most. The OC cancer treatment has come a long way and success stories do happen. I pray that luck will be on your side and that the treatment continues to work for you and gives you a very long break.
Dear Newbie,thank you so much for your inspiring words and wisdom. So beautifully written.
I shall print your message and keep it with me so that I can read it again when I'm feeling down.
I read it to my husband Dan, and he had tears in his eyes. Happy tears though.
And yes, one day at a time is what I need to hold on to. I am so fortunate to have lots of family support. My only complaint is that with all the assistance, I will need to learn to drive again!!
Thank you Seasun! Yes, you are right. I like your name! Summer has just started here in Australia and we have essentially beaten COVID (for now). There is no reason now not to grab every day and make the most of it!
Hi Lovely Pic and you certainly don't look 72! Geez I'm 61 and I'm sure I don't look as good! I think most of the ladies here can relate to how you are feeling. I was diagnosed Stage 3 OC in in 2007, 18 months after losing my own Mum who had had OC but succumbed to Bowel Cancer. I think all I can say is don't think about what might happen or you will miss the here and now. Now is the time for adventures etc. I know it's hard. My Dad watched me go through diagnosis and then a recurrence during which time he was diagnosed with a return of his Lung Cancer (32 years after his original diagnosis). I think it was harder on him to see me go through what I did whilst I in turn hated seeing him as he was. When he passed I felt like the worlds oldest orphan, still do to be honest but I treasure each and every day we made memories. Big hug. Kathy xx
Thank you Kathy. A little makeup goes a long way! You wouldn't want to see me at the moment! I look about 85.
That is terrible that you lost your Mum and then your Dad too. You obviously loved him dearly. Both, I am sure.
I lost an Aunt to OC (on my mother's side). As you can see in the photo, I have a daughter and a granddaughter. My oncologist suggested that I have genetic testing for the BRACA gene. It proved to be negative thankfully. However, my daughter has been told to be aware. As there is no screening for OC at this stage, I'm not sure what she is supposed to do!
Yes, you are right - now is the time to make memories for friends and family.
What is really frustrating is that my Dad who is 98 is in another state in an Aged Care Residence. My sister sees him regularly but if we go there from here in South Australia we have to quarantine for two weeks there before we can see him. I have to be back here for the new round of chemo in early January.
SORRY TO HEAR ABOUT YOUR SITUATION. YOU WROTE THAT THERE IS NO SCREENING FOR OC. THERE IS THE CA-125 WHICH COULD BE DONE PERIODICALLY AND YEARLY SCANS. I HAVE FOUND IT PAYS TO BE VIGILANT, IT IS NOT HOPELESS AS THERE ARE OPTIONS FOR SCREENING.
I think we can all relate to your 2am thoughts. Sometimes I still double take and wonder if it is really me with a stage 4 diagnosis. Sending hugs and love... it will pass. Great pic btw! xx
Thank you Lyndy.I know - "is this for real"? It kind of sits in the back of my mind all the time but then pops up out of the blue, that it is true. I suppose it will be different when there are more symptoms. Big hugs to you too.
What a marvelous photo. Three beautiful generations! I’ve been on Ovacome for the last hour (its 4:00 am in my neck of the woods). I often wake up during the night, and, like you, begin to think of what I (and my adult daughter) are faced with. I’m 69 and retired in 2018. Planned to work part-time to earn a little extra money for travel, and then just relax and enjoy my golden years. Well, OC diagnosis and debulking surgery put quite the kink in my plans. I finished front line chemo a month ago. Had to decide on whether to begin Niraparib. I’m BRCA negative and it is the only parp inhibitor available to me. After much research and having spoken with my oncologist, I have decided to forego the parp inhibitor and just enjoy some time without toxicity. I know I will be faced with chemo again. But my daughter just purchased some cheap tickets to St Thomas, US Virgin Islands. If all goes to plan with my health and the COVID situation, I will ride a horse along the beach on my 70th in April ( I have long wanted to do this). I guess I just wanted to say that I hope to make some happy memories for my daughter to hold dear. She came to look after me after my surgery in June, but will move into her own apartment in January. I am a little nervous to be on my own, but she will just be 20 minutes away. I have learned from the lovely ladies on this forum that there are several treatments that will hopefully afford me more time with my daughter. You have such a beautiful family, Jill. I do believe that you will make many happy memories with them in the future. I had a very dear friend who was from Queensland. She was about five years older than me and was one of the most amazing women I have ever known (she danced the tango in Argentina!). You Aussie ladies have beautiful and strong spirits. Your spirit will give you strength to handle any rough days and to enjoy the many fabulous days ahead. Best wishes from Louisiana
JUST WANT TO TELL YOU THAT MY ONC WAS VERY UPSET WHEN I WASN'T RUSHING TO GET ON PARP. I DID START IT AND NOW HAVE NO SIDE EFFECTS- JUST A LITTLE TIRED NOW AND THEN. THE DOCTORS CONSIDER IT A POSSIBLE "LIFE CHANGER". THE SIDE EFFECTS THAT MOST HAVE GO AWAY AFTER A SHORT TIME.
Thanks so much for sharing your experience. I read some of your earlier posts and it appears that you are BRACA positive. I am BRACA negative and after much research and deliberation have decided that because Niraparib will likely extend my remission by only a few months, I would rather enjoy however much time I can off cancer medication. I know I will face chemo again and will cross that bridge when I get there. My oncologists explained that Niraparib is the recommended course of treatment, but he understands how I feel and did not pressure me to take it. 🙏🏽Sashay
Dear Sashay. It is so nice to receive your message. I have visited the US a few times but have never made it to Louisiana.It sounds so romantic!
I fell in love with a lad who was on R and R during the Vietnam war. (As many of us nurses did)! We met up in South Carolina later but it didn't work out as we didn't have a lot in common. No wine, dancing or movies! He was a great guy though.
So I headed off to Canada (my mother was Canadian) to meet her family. She came here to Australia as a war bride. My Father was a pilot stationed in Edmonton, Canada. Long story short I met Dan my husband and 12 years later we came back to OZ. Dan is an Aussie now.
I looked up Niraparib I am BRCA negative. It has only been approved in Australia about a year ago and I'm sure it hasn't been put the PBA yet (Public Benefits Authority) so it would cost a bomb. My oncologist said that without the PBA approval Avestan costs $60.000 for the full year treatment, which I had. Fortunately it cost nothing as it was covered by the government. Sadly before my very last dose, my C125 went sky high and it was stopped.
Oh I do so hope that you get to ride that horse on the beach! April is not that far off! What date is it? My son's is the 30th. We are both so lucky to have caring daughters. Ours lives quite close after emigrating with her Canadian husband about 10 years ago. I'm so grateful that she is here.
I can read your spirit in your words Sashay! A strong woman!
Thanks Jill. Reading your post made think of my Aussie friend in Hawaii. I had not called her in months. But I called her yesterday and we spoke for almost ninety minutes catching up! She is 82 and is living in a ‘care home.’ She misses her independence, but her mind remains sharp and we had a great conversation. I have a PET scan tomorrow. Fingers crossed 🤞🏽 Sashay
Dear Jenjill, please do not give those thoughts any headspace at all, save all your energy for surviving this awful disease. I am currently on third line chemotherapy having been diagnosed in 2017 with stage 4 ovarian and peritoneal cancer.I refuse to think negatively that's isn't to say I don't get scared because I do but I am not a quitter.
All those adventures in the future are what you are LIVING for. Stay strong you have a lovely husband to hold you up. Never give in and never give up. Please look up the most inspirational poem I have ever read called The Oak Tree, when you feel low read it again and again. My thoughts and love to you. X
Thank you so much Wasginger. Wise words indeed. Sometimes it is hard to get it out of the back of your head, as you say,
I printed a copy of The Oak Tree and it is beautiful and inspirational.
Are you feeling OK at the moment? I hope COVID is not too much of burden for you.
All is good here in S. Australia but it will be a different Christmas as the borders are still tricky between us and the next state where my 98 year old Dad and sister live. We can go but we would have to quarantine for 2 weeks there and I have to be back for my next chemo.
Hello Jill, I am so glad that you liked the poem it is indeed very inspirational, I wish that I could write so deeply and with such meaning. I am ok, have been today for pre chemo clinic with chemotherapy number 4 or 16 if I count from the outset. My CA125 had dropped from 932 to 847 which is very slow and incredibly frustrating but I am grateful that it is no longer rising and going in the right direction and staying positive for good results from the last 3 sessions of chemotherapy. If I compare the CA125 now to what it was when I was diagnosed in 2017 when it was 3606!!! It focuses my mind.
I will keep going no matter how long it takes, as long as I can have my condition managed so be it.
Hopefully it wont be too long now before I have the vaccine for Covid and some normality can return in time for the spring when I can get back into my garden.
Look forward to the time when you can spend as much time as you want with your lovely Dad and your sister, you will get there . Cancer robs us of so much, dont give in to it Jill, look forward every day.
All of us have been terrified enough with our diagnosis...............add in the complications of Covid it is just so difficult. I had no symptom at all! I was diagnosed Dec 2 2019 and 6 hour surgery Dec 9 wasn't even sure I would make it through the surgery. Found out Stage 3 OVC ......... Chemo for 4 months one month after surgery NED in August of 2020. Also in a vaccine study and on Avastin until April 2021 22 cycles. Many many times you think the creature is crawling around trying to take over. When I get up in the morning I try not to think about it by being thankful for another day! I drink my coffee out of a cup that has a picture of my Doberman on it that says "The difference between me and them is that I keep going when it becomes hard".
When I go to bed I set up a "virtual shooting range" in my head.............telling my good cells to fight the cancer cells and that we will hunt you down and destroy you while I rest for another day!
Do not give in to this dreaded disease! Each year you live more options become available. Lean on friends, this website (it is so wonderfully filled with positive women) Fight on and take more pictures of your beautiful family and life!
Thank you Debbie for responding to me. I was disappointed that I'm BRACA negative and my oncologist said that PARP would not be of use to me. Oh well, at least my daughter and granddaughter have less to worry about. although of course they will need to be aware.
Your idea of shooting the enemy is a good one! As you say (and my husband too) that new choices are being developed all the time.
COVID has probably put a spanner in the works with research I guess. I have read that California is on lockdown - has it affected you?
Our second largest city Melbourne (5 million) was locked down for 2 months. It was a harsh decision for many, and there were a lot of complaints, but they have been COVID free for over a month now. It has been an incredible year for the whole planet.
Hi Jill! Yes the drama created by our governor is affecting business and really the mental health of people cooped up in apartments. We however really have not been affected much. I have been self quarantined since my surgery as of December 2019. Since my chemo ended in April of 2020 my immunity has risen as all of blood counts are in the normal range. That being said I do venture out to do food shopping and go to paint and hardware stores as we are taking the opportunity to do some remodeling of our home.I have plenty to do here with the horses chickens gardens and cleaning house! I am retired and my husband works from home.
My treatments, Dr’s appointments and scans have not been impacted in any way. I do know one medical facility here is not taking care of its patients because of COVID. Which to me is ridiculous as we will die if we don’t get continued treatment or accepted in trials etc........
I have been thinking of how to bring Ovarian cancer to the forefront to our great nation as it so often does not get discovered until too late. Not enough is being done for Ovarian cancer and pancreatic cancer.
My insurance covered a CT scan every three years as preventative medicine and that is how I found out I had it. Had it not been for this elective scan I would not have known until it spread throughout my body as I did not have any symptoms.
As for the parp inhibitor I too do not have any mutations genetically me or the tumor. However she will prescribe one for me when done with Avastin. Look into it as she said they do work on non braca patients.
Maybe it is the type of cancer I have.
Also look into qualifying for a study if you can I am sure Australia has a government program listing for cancer studies.
I am in a double blind study that they are using a vaccine created from my genetic tumor and my immune cells to train my good cells to target those particular cancer cells.........it is supposed to extend remission longer than usual keeping fingers crossed!
Sorry this is so long but keep pushing and advocating for YOU! This site is amazing and the support of all the teal ladies wonderful!
Hi. I totally empathize with your early morning fears. I was diagnosed 3b a month after I retired in 2018. At first I was in shock/survival mode. I had a recurrence a year later and now I’m on Lynparza and ned. I find the remission times are when I get depressed and sure death is around the corner. As others have said the only solution is to live one day at a time to the fullest. Covid has made it difficult on top of cancer but hopefully an end to that is in sight. Hugs.
Hi. I’m on Cape Cod in Massachusetts, US. Covid is really ramping up here after a calm summer. You should be okay for summer and then we’ll have the vaccine. It’s been hard because this time on Olaparib is when I could be traveling and enjoying life but I can’t. Hopefully the ned state will outlast the virus! I hope you’re feeling more positive.
thank you Delia. I'm wishing you the best too. Cape Cod, Massachusetts looks like a wonderful place - much like our Tasmania. You would think that virtual "islands/peninsulas" could have been protected from this virus.
The problem is we’re very connected to Boston and many people have second homes here from New York and all over the North East. It was easy to be outdoors from May through October but now it’s too cold. I can’t wait for the vaccine!
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