Wednesday 16 November 2011

Just when you think you can relax...

Hey there!

Today has been a not so great day.  My breathing is fine; by that I mean that it isn't significantly worse than usual.  TS is not the thing bothering me today.  I will be honest; I found a lump.  For a woman, lumps are not such a great thing to find.  I know that 75 percent of lumps are benign, but my mind has raced ahead and started thinking about what would happen if I need surgery for something other than my airway. 

Because of where I live, I would be referred to Queens' Hospital.  Queens' is probably a really nice place, but I have had nothing but bad experiences there.  They told me bluntly one day 'why do you bother coming here?  We have no experience of treating TS, and no equipment to treat TS.  If you nheed to go to hospital, you have to go direct to the hospital in London treating you'.  Fair enough, but the hospital in London treating me (the RNTNE) no longer accepts walk in patients or self referrals.  Which means that I have two choices; to either go to the Lonhdon Hospital, or UCLH.  The London refers their ENT patients to Barts Hospital, which is no good to me as I need to be sent to the RNTNE.  Which leaves only UCLH.  One day, I will tell you a long story about what happened to me at UCLH, but to cut it short, as I once made a very serious attempt to hang myself in the hospital bathroom, they now insist that when I am at their hospital, I must be either guarded by security, or escorted by a RMN.  This is fine, absolutely fair enough.  But it's quite distressing when you can't breath and are in terrible pain because of it.  C'est la vie, and all that.

So my worry is, if I do need surgery to remove the nasty lump in my breast, where am I going to go?  What do I do?  I can't go to Queens'; they can't deal with my airway.  I'm not afraid to admit that I am frightened.  Not because of the lump, andall that entails, but because of the logistic problem.  What is to become of me?......  lol, dramatic or what?!!

Sorry for wittering on, like I say, it's been a stressful day.

My message today folks, is check yourself for lumps and bumps carefully; you never know when it will save your life.  TS is not anh excuse to neglect your body.  You are unique and special people, so please take care.

Have a great day.  And look after yourself!  See ya soon XXX

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