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Waiting for follow up

Laceylo
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I'm now 17 weeks post treatment for base tongue and I havent had my follow up appointments. I had 1 5ish weeks post and now nothing. I just want to know that all that I have been through has been worth it.  I still have my PEG tube in and dieticians want let me have it removed, it's not in use, I'm starting to get really fed up with it. 

  • Online

     

    Hi Laceylo,

     

    Welcome to our forum. I am sorry to hear that you still have your PEG tube in, even though you are no longer using it. You don't say how long it is since you had your 5 weeks post-op appointment, but you must be finding this very frustrating.

     

    Have you been allocated a specialist nurse? You could phone her and ask for advice. If you don't have a number for a nurse, then phone your consultant's secretary. You should find this on any letters you've had from the hospital. Again if you can't, then phone the main hospital keyboard and ask to be transferred to your consultant's secretary.

     

    PLease let us know how you get on. We are always here for you.

     

    Kind regards,

     

    Jolamine xx

  • Offline in reply to Jolamine

    My treatment ended 21st February so I'm coming up to my 17th week post treatment.

    My last appointment was the beginning of April.

     

  • Online in reply to Laceylo

     

    Hi Laceylo,

     

    I don't know much about your type of cancer, or how long your PEG should be left in, but I expect that it could be out by now. Make that phone call tomorrow and see what advice you get.

     

    Kind regards,

     

    Jolamine xx

  • Offline in reply to Jolamine

    Thankyou, I will.  I had base tongue. 

    I was told, by the dieticians, it wouldn't come out until they had my test results. But before treatment started they told me it would be out by June.  

    I would love to take a long deep bubble bath and when lockdown is over take my kids swimming but I cant while this thing is still attached.

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