Grrrr!! more waiting!

1 minute read time.

To all you lovely peeps out there waiting to hear what happened at the MDT meeting today, and who are watching my blog – no news, I'm afraid. 

Apparently the CT scan was inconclusive – they couldn’t tell which part of the bowel was involved in the fistula, and if they don’t know that, they can’t operate.  I thought Tracy, the lovely nurse who called me, was going to say that they would do an exploratory operation to see what was going on, but no, this time it’s an MRI scan.  So, you’ve guessed it – more waiting!  I quizzed her on how much waiting would be involved, but didn’t get a definitive answer.  I would guess a couple of weeks before I’ve had the scan and the results.  It’s terribly frustrating, especially as the fistula is getting worse and worse. 

Another side-effect that’s getting worse and worse is my hand and arm.  When I try to do anything with the left hand or arm, debilitating pins and needles set in and I can’t do anything until they go away of their own accord.  Even typing now is pretty impossible.  What key I hit with the left hand appears to be out of my control, so I spend most of the time correcting mistakes.  Another frustration.  Ah well, I guess all these things are sent to try us, but since I don’t believe in a malevolent higher power, I can’t really think why!

 

Anonymous
  • Hi, Dyad. I was waiting for your update. How very annoying, and you have to put up with the problem for longer. And tha additional irritations! As you say, Grrr! I thought MRIs were pretty definitive, although not for minutiae! Can you not download one of those voice apps for your typing, I have the facility on my phone, but don't really know how to use it!? Much love, Mary. X

  • FormerMember
    FormerMember

    Hi Dyad

    Good to hear from you ,bad you have to be kept waiting. I am endlessly waiting and waiting , but what can we do? I have an mri booked for this Thurs then have to wait for a ct scan then the biopsy then ???? Tired of it . So sorry you are having the pins and needles thing, sounds awful. Your bravery is amazing and you are amazing. Keep us updated lovely lady and keep your chin up.

    Love

    Sandra xx

  • FormerMember
    FormerMember

    Re the scan: I should have explained that, once again, my hip replacements are being blamed for clouding the issue. And I had to have the hip replacements because the radiotherapy had messed them up in the first place! So you can't win.

    Sandra, some people have suggested that I go private for the MRI. Though I could afford that, I have no idea where to start. Presumably they need it taken from a certain angle to show the fistula, so there would have to be some correspondence between the people doing the scan and my surgeon etc etc. I just feel that going private probably wouldn't save any time. Anyone any ideas?

  • FormerMember
    FormerMember

    Hi Dyad

    I think if you ring your surgeons secretary she could probably offer some advise. My friend went private with a scan for her daughter and had it done 2 days later. If you ring hopefully you can get answers. Let us know what you decide to do.

    Love

    Sandra xxx

  • Hi Dyad,

    frustrating isn't strong enough a word! I hope they get it sorted asap so you can regain a better quality of life

    love

    Liz x