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Just diagnosed

JimjamJimjam Posts: 15
edited March 2020 in Diagnosis & Appointments

Just diagnosed with peritoneal cancer. Got the news by phone the Friday before Christmas. Saw a consultant oncologist for first time last Wednesday chemo was supposed to happen next day it got cancelled at last minute, didn't happen next day. Now supposed to happen this Wednesday but not confirmed, have booked blood test again for tomorrow but don't have blood form. Tried to sort this all out Friday and my specialist nurse was supposed to get back to me but didn't. So frustrating.

All this was diagnosed by accident after an ultra scan for a problem with my gallbladder which resolved itself. That scan found a fatty lump on my kidney which is ok but that then found the diffused nodules on my ovaries and omentum. I had a hysterectomy when I was forty but they left ovaries behind. I'm 66 now.

I was just getting over my mum's death 18 months ago of vulva cancer which came on very suddenly, she'd been treated for 8 months with cystitis! She was very fit & healthy till this. It took her in 6 months in a very distressing way. My mum also had a hysterectomy at 50 & they also left her ovaries behind. I'm also now having the genetic testing for a faulty gene as I have two daughters who both have polycystic ovaries. My mum also lost her sister 12 years ago to breast cancer that wasn't treatable. So my cancer has been found by accident. I'm still trying to take it all in. Headless chicken mode still


  • LouiseJLouiseJ Posts: 789 ✭✭✭✭✭



    I am so sorry to hear about your recent diagnosis, how awful for you to hear in such a way too by telephone and before Christmas (not that hearing it any other time makes it more bearable..it doesn't). I am also very sorry to hear your appointments have been messed around and you are still waiting to start treatment. It sounds as if you have had a lot to contend with in recent times, I am very sorry for your loss of your mum.

    Did you manage to get hold of anyone today to confirm Wednesday? You won't necessarily need a blood form, the onoclogy unit should be able to sort that out for you.

    I understand that it must all be a very anxious time for you and your family, the good news is the cancer was found and you are able to have treatment. I know the genetic thing is also a worry, but try not to dwell too much on that at the moment. You have a lot going on, it is a whirlwind after being diagnosed with all the tests, scans etc to be attended to. I remember my feet didn't seem to touch the ground!

    It is great you have found our community, it is full of lovely people who are so supportive and really do understand what you are going through and how you are feeling. Please don't hesitate to get in touch , especially if you have any questions about chemo etc, or any other part of your treatment. But also, we love to chat about anything, feel free to join in with any of the other discussions or start your own if you like.

    Please keep us informed how you are getting on and when you start chemo, which I really do hope will be this week!

    I hope to chat with you soon,

    Lou x

  • JimjamJimjam Posts: 15

    Thank you for such a lovely warm welcome.

    I had my blood test this morning at local GP surgery with the form details dictated over the phone to me from my cancer nurse.Spent quite a long time getting my appointment confirmed as I wasn't appearing on system with an appointment for Wednesday which suddenly appeared after we finished phone call.She rang me back to confirm my 1st chemo session. I'm pretty freaked out thinking about it and worried it might get cancelled again. I should have asked if my daughter can stay with me while it happens. So many worries about it all. It's all happened in such a muddle.

  • JimjamJimjam Posts: 15

    Carboplatin & Paclitaxel are what I'm going to have in chemo cocktail. I've no idea how long this will take.

    Any tips or hints would be much appreciated as I have no info other than the oncologist telling me the nasty things that might happen

  • LouiseJLouiseJ Posts: 789 ✭✭✭✭✭
    edited January 2020


    Brilliant! Very glad to hear bloods are done, now you are set for Weds. Your daughter should be able to stay with you for the whole time, This is usually the way in chemo units. Sorry I am assuming you are in the UK, which is where I am.

    A few things to pack with you, in a little bag, drinks, snack, book etc. It can be quite cold in the chemo unit, some people take their dressing gown or a blanket with them to stay warm.

    You may be at the hospital for a while, but you will be monitored very closely throughout the whole time, and you will be sent home with an armful of drugs to take and when to take them. Just take things one day at a time, sometimes one hour at a time, or less if necessary.

    As I type this I just saw your next message pop up, yes they do have to give you the list of possible side-effects etc. But it doesn't necessarily mean you will get them all! My biggest fear was being sick as I don't do that (lol), but they now have brilliant anti-sickness drugs to help prevent that. Take them all!! I wasn't sick once. I did lose my hair, and didn't use a cold cap. My hair has grown back, but I now keep it short.

    There are many here who have had the same chemo as you, mine was FECT-T (for breast cancer), I am sure some of them will be in touch.

    It is very scary, the thought is worse, once you get in a rhythm with it, it will go surprisingly quickly. I likened my chemo drugs to a scud missile, going round my body seeking the cancer to destroy it, I would cheer it on it's way. Haha.

    I do not want to bombard you with loads of information, but know at any stage during this you are more than welcome to contact me either here or by message. I and so many others understand COMPLETELY.

    Lou x

  • RobertARobertA Posts: 1,273 ✭✭✭✭✭



    My goodness, you have been through a lot. I am pleased you found us and that you have already been in touch with Lou who has been so helpful as always.

    I would like to add my own welcome to the group. We may have different cancers, but most of us will recognise the feeling of anxiety it brings and we are here to support and encourage each other. The community is full of courageous, caring and funny people who don’t mind when you are having a bad day and who celebrate the good ones with you. I do hope you will keep in touch.

    Rob x

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