Check up frustration

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I've been for my six week check for reoccurrant endometrial cancer and I'm totally confused! Anyone who has been following my story over the last two and a half years will know this is my second dance and this time I've had radiotherapy and brachytherapy. The first time round they told me the cancer was gone at my appointment. This time round he was noncommittal. The cancer itself was grade 2 but he said it was stage 4 due to it being a reoccurrence. He told me today that my treatment went 'satisfactorily' and that we'd watch and wait and he'd see me again in July. So has it gone? Are we waiting to see if its gone? I don't understand.  Can he not say its gone with it being stage 4? He said he was hopeful it was gone. It's so frustrating! I'm starting back at work tomorrow and I'm not even sure what I'm supposed to tell them. Why can't they just be plain speaking. Grhhhhh

  • Aww Nicola, I’m so sorry you feel so frustrated but you have good reason, it does not sound like things were explained at all, why not give your cancer nurse a ring and get her to explain it, they usually have more time and understand how important it is to know what is what, sorry I can not help but as you know I’m not really up with the info like the others on here, but I am sending you the biggest of hugs my lovely, hope you sort  something out and get the answers you need, defo ring or email your nurse xx

    Don’t ever give up hope, there are earth Angels all around us and Miracles really do happen xx 
  • FormerMember
    FormerMember

    Hi

    I am not a doctor but I think the reality is that it’s not clear cut. No evidence of disease can be taken as a cure when it’s a stage 1, grade 1 cancer because the chances of recurrence are so minuscule. But no evidence of disease in someone with your history is less sure. It may well be that it’s been eradicated but your doc won’t be able to say for sure until the five year mark has passed and you’re still NED. It’s tricky to live with this uncertainty, I know. I mean I really do know. But I also know that there’s a choice. Live in fear or live life to the full. i know which I choose. I think I know which you will choose too. 

    Lots of love xxx

  • Thank you Danoli as usual you have put things into perspective for me. Yesterday I was just so frustrated that I had no answers but you are of course right and that's pretty much what they said, they were hopeful it had gone, I guess you can't really be with my history. 

    You are of course also right about that the later. Live life to the full or you don't live at all. Someone once said to me that the only difference between a rut and a grave was the depth of the hole, a matra to live by I think. I had my first day back at work today and it unfortunately feels like I've never been away, straight back into the rut. So I'm taking this as a sign. A sign to re-evaluate my life, something I was going to do originally after the first cancer but the fear was just overwhelming. I can deal with the uncertainty but I don't think I can live with the same sh** different day not after the last two years! It may take a few months but then it's onwards and upwards I say

    Nic xxx

    There's a Silver lining in the clouds of doubt
    Lean into the storm with
    Open arms and let them know
    You didn't come this far to just let go                                    Your spark can start a fire. .. 

  • Hi Nic

    Good to hear from you and to know that you've got through your treatment. I think Daloni explains it very welll and I agree that life is for living. We didn't choose to have cancer (who would?) but we can choose how we deal with the worry, fear and negative thoughts. We can allow the fear etc to overwhelm us or we can refuse to give it house room and live our lives to the full. It's not easy, I know that only too well. I ope that as you re-evaluate things you'll discover new and wonderful things that you're able to do and want to do. Gentle hugs and lots of good wishes that all goes well for you x

  • Thank you sweetheart. I'm feeling a lot more positive today and after my first day at work and swimming a mile in the local pool I am now making a list of all the things I'd like to do with my life!

    I hope you are well, thank you for your kind wishes and all your support xxx

    Nic xxx

    There's a Silver lining in the clouds of doubt
    Lean into the storm with
    Open arms and let them know
    You didn't come this far to just let go                                    Your spark can start a fire. ..