Search for a solution begins

I was up very early and connected to the internet.  I’m determined to find something to help me work out what next.  What does this really mean?  I can’t believe it’s so rare that nothing is available I’ve just got to rummage.  I start, of course, with the cancer organisations in the UK and hope that I can find one as this will mean that I can call them or maybe call in to see them and find out more – nothing but a mere mention that it exists and is rare.

Breast Cancer Care UK’s site has only a short mention of what it is and some options to explore – but when I read this page I realise that really they don’t know for sure what to do… or not enough to quench my need for information.

I can’t even find a reference to it on the Macmillan site or Cancer Research or Breakthrough Cancer and believe me I think I searched through every page scouring for information.  I guess that as it’s not common their resources are spent better on more common illnesses.  But I’m not quite sure how this makes me feel except very very alone and yet more frightened at the unknown.

I then search through as many medical sites as I’m allowed to view (there’s a lot that appear to have the information but you have to be a doctor or have a secret handshake to see the information – why?).  WebMD usually comes up trumps but this time only tells me simply that “The following are tumor subtypes that occur in the breast but are not considered to be typical breast cancers”.  Wowza that’s helpful – NOT!   Doctors Doctor site has an outline in lay-persons language but then goes on to medical speak and I get lost in the detail.  I’m fuzzy enough as it is and taking things in and concentrating on things is out of my league at the moment.

I’m exhausted and tearful at the lack of information available.

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