Stage 4 ovarian cancer: fear of dying keeps me awake

Diagnosed with stage 4 ovarian cancer in November. Had surgery and now getting weekly chemo. It’s so draining trying to get through each day, I lie awake at night worrying about dying and all the people I am leaving behind. I want to scream at the injustice but I know millions are in the same boat. I wish I could make peace with it but at 54 I still thought I had a lot of life yet 

Parents
  • Hi I was also 54 ( nearly 55 ) when I got my diagnosis ovarian cancer stage 4b .. no surgery for me they refused 4 times and I do keep asking ( must me mad eh ) .. I too spent the initial few months year in a total fog of depression crying constantly as I didn’t want to loose my life and leave my children I too felt the complete injustice of my diagnosis I was a fit woman , ate well exercised days a week ( spinning gym weights ) and bam this diagnosis .. I’ve been fighting now for 2 years 4 months and it is a fight more with your emotions I’ve seen a clinical physiologist who did help bu you only get so many sessions with the nhs . Everybody’s journey is different I’ve been unlucky I had a bowel bleed in august where the cancer had invaded the bowel CT didn’t pick it up , and two da ago they confirmed i have lesions in my left breast so waiting to find out which cancer that is .. so although your fighting stage 4 they have a lot of medication to try for you .. I wish you all t luck in the world but the surgery is a godsend you’re so lucky .. look after yourself

Reply
  • Hi I was also 54 ( nearly 55 ) when I got my diagnosis ovarian cancer stage 4b .. no surgery for me they refused 4 times and I do keep asking ( must me mad eh ) .. I too spent the initial few months year in a total fog of depression crying constantly as I didn’t want to loose my life and leave my children I too felt the complete injustice of my diagnosis I was a fit woman , ate well exercised days a week ( spinning gym weights ) and bam this diagnosis .. I’ve been fighting now for 2 years 4 months and it is a fight more with your emotions I’ve seen a clinical physiologist who did help bu you only get so many sessions with the nhs . Everybody’s journey is different I’ve been unlucky I had a bowel bleed in august where the cancer had invaded the bowel CT didn’t pick it up , and two da ago they confirmed i have lesions in my left breast so waiting to find out which cancer that is .. so although your fighting stage 4 they have a lot of medication to try for you .. I wish you all t luck in the world but the surgery is a godsend you’re so lucky .. look after yourself

Children
  • Thank you Tracey and I’m so sorry to hear they won’t give you the surgery… why have they refused? I have my ct today, it feels like you go from scan to scan and all the time in between is filled with anxiety and worry. I am having a telephone counselling session tomorrow night to see if they can help me manage my anxiety. It’s very difficult to inhabit the world of living which carries on regardless and dealing with the fear of dying. It has been so helpful to connect with people on here who truly understand the intense loneliness and sadness that comes with a cancer diagnosis. I hope you don’t need to wait too long Tracey to find out about the lesions in your breast. Sending you good wishes x

  • At first they wouldn’t operate because the disease was wrapped around the main artery into my liver .. it was also too wide spread in my peritoneal cavity. After 6 rounds of chemo they said it hadn’t shrunk enough they refused after 3 sessions then 4 sessions and then 6 . I asked again after the 15 sessions of bevacizumab .. it was at its smallest all over my body but she was unwilling to operate as the Parp inhibitors seemed to be working . I’ve been on them for nearly 2 years .. they are doing half a job keeping some areas stable but since the bowel bleed it’s classed as progression so I’ll be coming off them ( not sure what’s next ) chemo I think as I’m now struggling with ascites which means more progression . 
    im not giving up by any stretch of the imagination I’m trying so hard to stay positive but it’s quite tough .. 

    the fact you’ve had surgery is a godsend I still hope .. there’s lots they can do to give you more time .. I’m 57 too bloody young for this  I have 3 kids and 2 very gorgeous granddaughters ( one on the way .. more girls ) I tend to worry about them and my daughters that my awful gene’s are inherited but at least they are forearmed ..

    I wish you every luck on your journey it is not easy but you pull your big girl pants on and face it head on .. 

    sending you lots of love hugs

  • Hi Tracy

    you really are going through the mill and it has made me realise that while surgery and the complications were awful, that I am grateful to have been in a position to undergo it. I just keep thinking of how strong we all are to keep on keeping on despite such a poor prognosis. I feel devastated that I am just going to be a face in a photograph to my 4 year old grandson, that he won’t remember me or how much I adore him. My 2 children are getting genetic testing done as my cancer is caused by the BRCA2 mutation. I just hope it ends with me and I haven’t passed it on xx

  • I have the BRCA1 mutation .. both my daughters will be tested and hopefully my granddaughters .. my family has a history of breast cancer on my mothers side , she died in 2007 she was 57 same as I am now from bowel cancer and complications so I’m determined my daughters are ahead of the game .. I just got all 3 lucky me ..

    I’ve meet a few ladies at ovacome meetings and all of them have had surgery and were doing excellent.. showed me their scars went into detail about how they are living now .. and that’s the point they are living and so are you .. don’t think about the 5 year markers it’s not you you’re an individual and we all react differently.. you’ll be around for him to remember you just think positive and do everything you can to keep your immune system thriving it makes a difference, I’ve had vit c infusions and tried the hyperbaric chamber all which made me feel better .. 2 years 5 months since my diagnosis .. still fighting .. sending love hugs xx