Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

A trip to Edinburgh’s Royal Infirmary

Saturday evening I’m lying on my favourite sofa propped up by a mountains of cushions all set to have a quiet evening with the love of my life.  It’s 8pm and I turn and look at Steve, don’t feel too good, I say.  I can feel my tummy erupting like a volcano, gurgling and burbling .  I slowly ease myself of the sofa and head to the bathroom.  MADE IT JUST IN TIME.  Boy it wasn’t pleasant, I know no-one passes perfume, but the aroma was the stench of the septic tank when the pipe was ran over by the farmer and it leaked into the back field, believe me that day wasn’t pleasant either.  Although it was minus the tummy pain and all that came my way over the coming week.

From 8pm till 10pm the running to the loo got more frequent, yes my lanreotide is half way through, and I get diarrhoea, but it hasn’t been this bad for a long time.  I was exhausted.  I dropped off to sleep.  An hour or so later I woke up, feeling freezing, the pain in my tummy so bad I felt I couldn’t move.  I remember whimpering like a baby, and thinking to myself get a grip woman.  I just couldn’t.  I looked over at Steve.  He said While you were sleeping I had to run to the loo too, we both must have a bug.  I managed to get myself to the bathroom again, it was fleeing out.  oh no, here comes the sickness.  The first thing I could grab was granddaughter, Alexandra’s Potty.  I opened my mouth, no effort; out came the most horrendous vile and obscene volume of brown sickness.  Once it started I could not stop.  I began to sweat.  The next thing I remember Steve picking me up in the hall, all I had on by this time was pants and a cami vest.    Back on the sofa at last.  I felt safe.  I had the potty by my side.  Thank goodness it has a lid.  My head is banging, pain in my stomach, thumping in my chest; palpations like I have never had before.  I drifted back to sleep.

I suddenly wake, Its roughly 2am.  I have this crushing pain in my chest.  Feel like Im going to suffocate.  The pain moves to my shoulder.  To be honest, I don’t know if its two seconds, two minutes or ten minutes later.  All I know is I’ve never had pain like it and its frightening and very very lonely.  I thought I was going to meet my Maker. I lay quiet and let it pass.  My tummy was so sore, fortunately I had a pad on, one less thing to worry about than waking up on the toilet floor and poor Steve trying to deal with that too.

Before I know it its 7am.  I say to Steve, You need to call a Doctor, I really don’t feel well.  Steve called 111, spoke to the advisors, they decided the paramedics needed to come.  The ambulance came quickly.  The paramedics were super.  I can’t remember too much about them, but what I can and what Steve tells me, they were kind, caring, super efficient and very professional.  The one thing I do remember is I felt in so much pain and so sick I couldn’t hold the gas in air to my mouth, the paramedic  gently placed it and held my hand and told me I could press the button to release the gas for pain relief.

 

 

edinburghroyalinfirmary

 

 

I believe A & E was busy but with being brought in by ambulance in total agony, having a temperature on 40.9, having low blood sugar, I was very irritable and confused and that was all before routine blood tests,  I got treated and seen right away in immediate care.

For me the day came and went, my voice was Steve.  They took blood.  I had elevated white cell count, elevated neutrophils, high troponin, low potassium, low magnesium, abnormal ECG.  I needed to be admitted to a ward and to a room of my own.   Within minutes of the results the bags of potassium and magnesium were intravenously going into me.  A nice big dose of IV morphine to keep the pain at bay, an intramuscular injection for sickness.  An IV dose of hydrocortisone steroid replacement.  With ECGs every 3 hours.    They got me settled in a bed and ready for transfer to a single room.  Steve drove home for some personal things for me and came back, he is such a support, he goes that extra mile for me all the time; what a star.  He is my shining light.  When I woke up and he wasn’t there what an empty feeling I had inside me, then I just closed my eyes thought about him and once again it felt like we were together.

The staff had a lot to do to get me comfortable, once I was all settled in a bed at the Medical assessment ward, they got me moved to the appropriate ward.  I was moved to ward 207.  Where they were prepared for me, had my single room sorted and its a ward that is used to patients with artificial feeding which is great.  207 is Edinburgh Royal Infirmary’s busiest ward.  I spent one whole week in the ward.  My next blog post will be my weeks experience.

 

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Nets/carcinoid Syndrome · Uncategorized

A Week In and I’m having a break

Its been an eventful week.  My phototherapy machine was ever so kindly delivered by the courier.  Brought down from the photobiology department in Ninewells Hospital, Dundee.  We get it set up in the end bedroom.  Carefully I put the folder with the paperwork on the desk thats in the room.  make sure I have everything, creams, lip protection, goggles for my eyes.    The machine has an engraved plate on the front:  Hope 18.  To me this instantly makes me feel that the machine has some sort of entity and I have it in my head that the machine is of the female gender.  For me it makes its easier when I’m setting up, getting myself changed,  typing in the keypad – the time to warm myself in front of the lights.

My treatment gets done in quarters, I’m a piece of meat; getting carefully timed under the grill and turned over precisely as the timer says.    The bright lights shine up the whole room, when the beeper makes the familiar noise I safely take off the protective goggles.  My eyes take a few seconds to adjust to normality.

The first treatment over.   We have a quiet evening.  Next morning,  I wake up do my usual routine, my skin is a little drier than usual, but nothing to write home about.

Treatment two is fine.

Treatment three, approximately six hours after my treatment I feel my skin very tight.  There is a distinct redness to my skin.  Ouch.  Plenty of cream.  12 hours later and the redness has subsided.  24 Hours later a patch has developed on my throat.  And I can tell you its sore.  Both inside and out.  Its red and angry.  Evelyn my nurse came to do my peg care and my octreotide treatment injection.  Boy, was I glad to see her.  When she walked in, she first asked about my throat.  I told her how things were going.  She thought the best thing was to phone the photobiology unit at the hospital and ask what to do.  In the meantime she did my peg care, octreotide injection and checked over my throat.

I phoned the photobiology unit.  As ever the staff were fantastic.  Gently talked me through everything. They asked me to send photos.  Its been decided I have to stay off treatment till this Monday.  Take another photograph and send it to them, we will then decide when to restart the treatment and what dose.  The hospital staff have been in touch with me, my nurse and my GP – all on that morning – I have had my hydrocortisone replacement therapy medication increased and been prescribed hydrocortisone cream to apply on the affected area.   I feel very warm, like I’ve been cooked from the inside out – microwave fashion.   If i was cooked inside out, can you imagine my parathyroid glands if my skin on my throat looks and feels like this.

Fingers crossed it heals quickly and I can get back to my treatment soon.

 

 

My Sore Throat After Phototherapy