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Picture of Topic  'Today I am feeling' - managing emotions

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Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

how can i move on without breaking

Started by Anonymous on 01 August 2012 at 03:14

i went to see my oncologist today thinking i would be just offered chemotherapy as everyone has said that its a wait and see game but my latest mri and ct was clear...to my horror i get told the following
In 3 weeks my CEA has gone from 8 to 31 and I have had an MRI and a CT and they cant find anything? They looked at my histology and they are not sure if the cancer was taken all away or not because they cant get the info from Leeds where I had my operation …its been 5 MONTHS and still they haven’t got any info …now they say that it’s a waiting game ???? but im bleeding and they say its not cancer as they cant see it so it may be a collection in my pelvis???
What do I do ? is the cea going up so fast a sign im rapidly getting worse and it will take me ill die quickly ? are the hospital useless and not looking correctly ? or can the cea be caused by menopause and the small infection I had in my pelvis…I have sobbed for hours im so scared ill go soon ,im not allowed chemo because of the infection and bleeding. How soon do these tumours come back? and i have crashing fatigue too ?can this be a sign because my bloods apart from the cea are normal,i see my son and im heartbroken everyday because i know ill have to leave him at a young age in the hands of someone who has not been there for many years other than a few days a year. if this was just me i think id take my own life because the fear ia awful,i feel i am on borrowed time with no answers and nobody fighting my case to help me survive but me...i have had rectal cancer spread to my sacrum,so they carried out a pioneering operation to remove the bone and the bowel and the womb march 12th 2012,this was in the daily mail as i had been misdaignosed and to get an operation in the first place took me 6 months of pleading...any advice gratefully recived x

Comments (3)

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  • Picture of Robyn
    From Robyn  
    01 August 2012 at 14:53

    Hello - I saw your private message to me before this post so have sent you a message already which you will see on your dashboard when you log in.  You are welcome to get in touch anytime

     Robyn


  • From Anonymous
    01 August 2012 at 09:59

    thank you beverly ,im so grateful for the help...i am alone with a little boy ..i dont care about me i care about surviving for himxx ill contact the surgeon but im so tired its so stressful that the team im with in enfield cant helpx


  • From Anonymous
    01 August 2012 at 08:10

    Hi Ruthie,

    You have a lot of un answered questions and it's no wonder you feel like you do.

    The first thing though is that the MRI and CT were both clear so this is a good sign. Your CEA bloods I can't answer as to the reason it has gone right up. Robyn may be able to help you with that question as she is a cancer specialist nurse. They can't start chemo when you have an infection though as you have to be relatively well and maybe they may when the infection clears. Have they given you antibiotics?

    Have you a Macmillan nurse who could maybe help you and look into what's happened. 5 months with no result is disgraceful. What about ringing the consultants secretary and asking why the info has not been typed and passed onto your oncologist?

    Try not to put negative slants on the way you are thinking at the moment as it will make you feel ill. I know when I was going through my treatment I was like you.

    Have they checked your full blood count and if so maybe checking your b12 levels and ferritin and folate maybe a good idea as well as if you are b12 deficient this could explain your severe fatigue. Also a thyroid check would be a good idea as if you are menopausal and taking HRT this could also be affected.

    Keep in touch and take care.

    Beverley x


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