Haemangiomas update 

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So as I left things last time I was due to be seen by my consultant 24 October 

Monday I get a phone call from his secretary 👨‍💼 “can you come next week the 17th – “ gives me times and tells me he’ll work round whatever is easy for me 

I ask is there a problem she says it’s best till I see Simon (my consultant)

So now I’m worrying , does he think it’s cancer ? Has he seen something else on the results that shouldn’t be there ? What is it 

Of course the worrying leads to stress which leads to not sleeping 💤 

If anyone has a definition of dreams involving needing a toilet when I do manage to sleep 💤 these happen on a regular basis but it’s only been since the results were told to me

So I’m counting down the days ………. 

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Sometimes knowing is worse than not knowing 

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A while ago I posted somewhere about neuropathy , something I have been told I’ve been suffering from for the last 5 years 

Well that’s not the full story 

Finally got my MRI results back – brain all clear thankfully no sign of Parkinson’s which I was expecting – thinking moving onto the spine it would be a case of trapped nerve / nerve root damage 

WRONG 

They have discovered I have atypical haemangiomas between discs T2 and T3 (shoulder area ) and L2 (lower spine ) the latter explains all the pain I get 

Basically 90% of these are benign at the moment I don’t know if mine are cancerous or benign , to explain them better they are the same as the raised strawberry birthmarks people get on their faces but these are growing between the discs 

I now have to wait till 24 October for a further meeting with my consultant – either way they have to be treated as they are pinching the nerves

Treatment options are 

  1. Full removal 
  2. Surgery to stop the blood supply 
  3. Radiation therapy 

So many people are saying to go for the radiation therapy it’s not pleasant but sure as hell beats spinal surgery 

As my Facebook bio now says “I always knew I was special I have gummy bears growing in my back – my MRI says so” 

Why gummy bears ?? Because I couldn’t pronounce it at first and everyone finds it easier to call them that 

Am I scared – maybe – I don’t know what I feel right now , I’m trying not to think about it to keep my chin up and head held high at the moment but either way it’s someone I have to deal with 

But there is one question ???? How do I tell my ex who I’m still friends with , do I wait till I know the score and blurt it out do I say it could be and let him worry or do I say nothing and when he says how are you – lie ???