Incurable but treatable

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Hi there, l am editing and updating this post in light of a new development. Please see my Profile on Onk for my full story.I was diagnosed 3 years ago with Primary peritoneal cancer. I have had chemo, immunotherapy, chemo again, debulking op and bowel surgery and a stoma and removal of my omentum and another couple of cycles of chemo. At that point, last December l was NED. Since March this year, l have been on Niraparib. I have been so well all summer but became ill just this last week. Yesterday Friday 13th October, l spent all day in A & E from 11am until midnight. I had a CT scan. I was on my own for the result. My cancer has recurred (as l suspected) … So on Monday l will be contacting my oncology team to discuss a possible plan. I am so glad l joined this forum. I already feel well supported. 

  • Hi Jools lively to see you posting , hope your getting  the rest you need and keep on keeping on xx

    Moi

  • Hi Onk thank you for sharing your story, you certainly have been through a awful lot & your will to survive is inspiring. I  was so sorry to read about your daughter & husband that must have been so hard to cope with & then to receive your diagnosis must have been devastating.                                            I have secondary breast cancer recently diagnosed, I had the primary BC 23 years ago so I was so shocked after being clear for so many years & I'm finding it really difficult to come to terms with this news & felt completely overwhelmed. I have just started targeted therapy but had a lot of palpitations & spent a couple days in hospital this week for monitoring & tests as one of the tablets is known to cause heart problems. Thankfully everything was clear & I was told symptoms could be caused by stress/anxiety so I can now resume treatment & see how it goes over next few days.             It's been really helpful reading others stories on this forum & you realise your not alone & there are others who truly understand what you are going through.                                                                                          I love only fools and horses and even though I have watched so many times it still makes me laugh.       Take care xxx 

  • Hi Onk

    Just saying hello and what a journey you've been on, your story is inspiring to read because you have coped with everything so bravely and continue to do so. I hope you continue to post on the forum and I look forward to reading it.

    Have a great day

    Donna

  • Thank you Donna - l am going to try to keep up with posts and news. I don’t find it that easy to post on here. I can’t easily see who l have replied to or not and don’t want to reply twice I expect l will get the hang of it People think chemo brain is an excuse for being vague and forgetful but it is a real thing. I feel humbled to be among such brave and inspirational people on here xxxx. 

  • Hiya

    Thank you for the response, you are one of those brave inspirational people as well. I've been so scared at times and at a loss to know what I was doing but finding this forum and the lovely people that take part in it has been the best thing for for. When I was first diagnosed all I could worry about was when would I die, then I found this forum and the lovely people, I was given great support at a very confusing time and I continue to receive support when I need it. I no longer have dark thoughts, I live every day to have joy and fun and it's the people on here that got me there. I'm now able to support others when they need it and I agree chemo brain is real. 

    Have a great day 

    Donna

  • Hi Onk sorry about late response, after reading your post you are brave and inspirational, being a tough man I was surprised that I wept like a baby when I was diagnosed T4 incurable with short life expectancy.

    Like most of us I'm past my end date and still going, this group is wonderful, full of people who are sometimes happy,sad, strong, and down, ever emotion you have we have, so yes we understand.

    Screw cancer live life and enjoy every minute.

  • Aw… l totally understand. I am well past my sell by date. With bits missing and a couple of extra parts We can’t be strong all the time. I have had some serious meltdowns… lt’s the toughest thing in the world, looking death in the face but lots of people who were seemingly healthy when l was diagnosed have died unexpectedly. I couldn’t cope with the the online community when l was first diagnosed. But l thought l would give it a go and l am so glad l did. The support from the lovely brave people here will be wonderful x

  • I'm with you there since diagnosis I been to 8 funerals 3 for cancer 5 for other reasons all within my age area 

  • Oh Ulls, that's tragic but I must admit, I went to a few unexpected funerals early on and often thought, next it might be me. But here I am! Why? Who knows, who cares! The rolller coaster just keeps going!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi all, I've been to a few funerals over the last couple of years. My sister had dementia,  she and myself and family thought I'd go first, but my dear sister did, at her funeral sombody actually said it should have been you before Gaynor.  She was very quickly escorted out, some people aye xx

    Moi