Nets/carcinoid Syndrome · Tube Feeding

So happy to have a week in the sun ☀️☀️☀️☀️😎

The dark scary winter behind us.  Several hospital admissions.  The bulbs poked their heads through the earth and produced some colour.  As Spring emerged  I hoped that my favourite season would be kinder to me than the winter was.  However, the hope of a better spring turned into disappointment.   The sunshine break Steve booked on January 1st was something both of us were yearning.  The thought of the warmer climate, the slow pace of life, friendly locals – it was all felt very appealing.

The waiting was over.  Finally  the big tin bird was waiting on the Tarmac to transport us to our island in the sun.  I was nervous it was the first time flying since Lavita had became part of my life.

I was all very organised, letters from consultant, General Practioner,  and Community Dietician.  All explaining why I carry extra weight, have excess fluids, syringes, needles, scissors, dressings and lots of medication.

The airport was very busy, we all stood queued up, hand luggage in tow, passports in hand.  A steady drum beat like sound echoed through my ears.  The longer I waited the faster and louder the beat got.  Although palpations are an everyday occurrence, the venue was somewhat different to what I’m used to.  I  was next up, as I struggled walking stick in one hand and hand luggage in the other.  The airport staff quickly came to assistance.  They exchanged my stick for one of theirs, just in case I filled mine with illicit drugs, and the burly gentleman lifted my bag onto the belt.  I walked the walk.    Steve and I were both cleared at the same time.  All ready to board the plane.

The flight was grand.  Holiday was fantastic.  There were a couple of hairy moments like the time when I chanced having a handful of peanuts and one decided to try and expel itself out of my wound, a hair breadth from my gastrostomy tube.  As I was breathing it popping in and out, making a grand appearance.  I lay on the double bed, splayed my legs put my feet up on the wall, I got scissors and after several attempts gripped the end and pulled it out as it made its appearance – got it.  Oh yuk, all the granulation softened and started running down my tummy. My hair was soaking wet, legs shaking beads of sweat running down my brow.  Boy did I wish i was home.  I managed to clean myself up, getting a dressing on and rest up.  A few hours later I was feeling much better.

Steve and I made sure we had a relaxing holiday.  We did what we wanted when we wanted.  Steve hired a car and we travelled around the beautiful island soaking in the atmosphere.

Tranquility 😘😘

 


 

 

 

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Worth breaking the rules

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For the last five years my health has dictated holidays – breaks away abroad had been a thing of the past.  Postcards and tales from family and friends seemed to be the closest we were getting to foreign lands.  Anytime we thought about going away we hit stumbling blocks.  Our general rule is usually stay in UK, go somewhere proven.

  • do I feel up to going away
  • fitting timings in with lanreotide injection every 21 days
  • is it all really worth it
  • takings unusual meds on the trip
  • holiday insurance????
  • the weight of my fortisip drinks
  • carrying tubs of creams, factor 50 sun cream, etc

Im not the easiest person to be with at the best of time.  The spontaneous hypoglycaemia attacks when you least expect it.  Those who know me know I blether a load of rubbish at the best ofdden drop in blood sugar can turn me into a raving lunatic.  This tends to make my hubby slightly nervous, after the episode of us in the centre of Edinburgh and I just sat down in a crowded street – I could go no further and needed some supplies.  I’m sure Steve says in his sleep – “eat something” or “here is ….. Get it down you”. By the way this happens very often. I get grumpier than normal when my tummy aches.  one of the biggest challenges is the thought of leaving home and not knowing where the nearest bathroom is.  We have all had diahrea or loose movements at some time – but when this is an everyday occurrence a great deal of thought goes into leaving the security of your home and the comfort of ones own loo.

This is my 49th year on earth and have been married to Steve for 29 of them.  I want to do cheery happy things with my hubby.  Sitting one evening I thought I’ve had enough of pussy footing around.  I want us to go on a holiday abroad – go somewhere no-one knows us, take in sights and most importantly spend quality time together.   So we struck while the iron was hot and booked 7 days in Ibiza.  Was this too ambitious – a sunny island and me being photosensitive.  Get a grip woman I said to myself – put on plenty of your cream snd smother the factor 50 on.

The month before we were booked to go I was in hospital with pneumonia.  The thought of the trip we had planned together gave me strength and stamina to push myself.  Every breath, step was an effort.  Combination of IV antibiotics, steroids and sheer want to go helped me on the right road.

We got to Ibiza last week and spent 7 days there.  It wasn’t always problem free but having my soulmate with me made everything easier.

  • was it worth it? – most definitely YES
  • it wasn’t always easy
  • some of the hilly streets were a tad ambitious & challenging
  • was I tired? – exhausted – still am
  • would we go back – in a heartbeat

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