Tube Feeding

My New Companion: Hans

On the day we got trained to use my pump for my tube feeding – Gwen, the lovely nurse who trained us, gave me a card with her contact details and other information.  The card had a website on, it lead me to http://Pinnt.com

PINNT is a UK charity that supports and provides information for patients on intravenous and nasogastric nutrition therapy.

The charity sent me a beautiful bear this morning.  As well as being a soft little bear to tell all your secrets and insecurities to.   He is designed to be a companion to take on journeys.  Also a fantastic way of promoting awareness.    I’ve called my bear Hans.    I’ve called him Hans after a doctor.  The doctor was the chap that gave my Mum her first diagnosis of lung cancer.  He was kind and gentle.  I was with my mum and my sisters when he told her.  Mum and I hugged so tight when we left the consultation room.

Hans will feature in a few of my blog posts.   Already I have confided in Hans.  Fingers crossed he is loyal and doesn’t blab to others – ha ha .

This is lovable beautiful Hans.

Hans                       image

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Tube Feeding

Overcoming fears of tube feeding

It’s been three weeks since I left the hospital with my nasogastric tube.  If I’m honest on the way home I felt apprehensive, my nose was throbbing, and I wasn’t quite sure how confident I was about how well I would manage this new regime.  The big benefit I had was the support of my hubby.  With him by my side I believe I can cope with anything.

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Suddenly there is a whole new way of living.  Not to mention the new vocabulary that comes with it.  When starting off in this whole new world of tube feeding there seems so much to take in.  The physical aspect:  How to set up the pump, cleaning of syringes, using appropriate tubes, changing dressings on my face, taking the ph from my stomach contents.

Some of the new words become part and parcel –

  • flush (not what you do to a toilet):  using the syringe to put water through the tube to prevent it from clogging
  • continuous feed:  the feed drip feeding through the pump for several hours
  • nasogastric (ng):  tube goes into the nose, down the esoohagus and into the stomach
  • enternal feeding:  delivery liquid feed through the tube direct into stomach
  • obtaining aspirated:  using syringe to pull up contents from stomach
  • peptamin:  the type of feed I have

The first few days were slightly strange, I always referred to the guidelines, was a tad scared I was doing something wrong.  The district nurses came in and assured me I was coping very well with it all. I’m fortunate to have good nursescome in at least twice a week to see me.

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Once the first few days passed the whole procedure was very automatic and everything was getting done without a thought.

three weeks in and it all feels so natural and fairly easy to do.   It’s so good to wake up in the morning and know I haven’t had a hypo through the night.  The biggest advantage of the feed is I don’t have to get up during the night and make myself something to eat. I can wake up with a ‘normal’ blood glucose measurement.

The whole process is fairly time consuming and our recycle bin is now full a lot quicker than before.  However the advantages to the feed outweigh any problems, disadvantages.

At the the discussion with the consultant and team we were asked about the physical  appearance of the ng tube.  We answered Steve and I are comfortable with it.  During the first few days it took a wee bit of getting used to,  I was conscious I could see the loop that is attached to my face.  The first day I walked with my head at an angle the tube felt slightly stiff.  And truthfully I was worried the tube would come out.    Now I’ve got used to it.  My home visit nurse said to me a couple of days ago, when she comes in she doesn’t see the tube – she sees me.  That made me feel good and I believed her.  I’ve been out and about but last night was my first big outing.  Out for dinner and then to see a sell out show at the Edinburgh festival.  The assembly rooms were packed, we got a drink at the bar them queued for our seats.  Steve gently held my hand.  We were a normal couple out for the evening.  This is the first time I forgot I had s tube in.  The audience were there to see Elaine C Smith, not stare at me.  I can honestly say I didn’t feel looked at in any way – oh well with the exception of my hubby.  It’s always lovely to catch your other half looking at you.  Gives you that warm feeling of being loved.

The long and the short of it.  Prior to getting my ng tube fitted I was scared of the unknown.  Now I have it in I realise there was no need.

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Nets/carcinoid Syndrome

Entering the final year in my forties

It has been busy and emotional week for me.  After an eventful weekend; had my wee visitors from Glasgow on Saturday; always a joy to see Lindsay and the kids.  Louis was his wonderful wee self, full of conversation and telling my the latest chat – we even had some time to paint some pictures together and I had a snuggle together from 8 week old Patrick.   Teeny and Stuart brought Grace to visit too.  The kids had a ball.   Steve took me to see my Dad on Sunday and then we headed of to the Ann Edgar Net Cancer support meeting.  One of the members hosted the meeting in their home; lovely baking, good company and plenty of support, friendly advice and chat.

Monday started with my lovely nurse popping in to check up on me.  The usual change my dressing, check my feeding tube, etc.   it was one of those days when I’m dragging myself around.  Everything was an effort, lifting my feet to get anywhere was a chore.  It felt as though I had lead boots on .  The afternoon for me was met with the sofa and a movie.   Some days the damn fatigue wins hands down.

Tuesday was a welcomed visit from two of the new owners of buddy and bella’s puppies.

Wednesday a visit from one of my closest friends and my 20 year old godson.  Wonderful to catch up.

Thursday was my 49th birthday.  Up until my mum passed away two years ago I would get a text and then a phone call from my mum early in the morning.  This morning my phone beeped early – it was a text from my youngest son, Stuart, to say happy birthday.  A welcome call in the morning.  Busy day ahead.   Nurses in the morning.  I’ve got an appointment at the hospital with my net specialist in the afternoon.   My 5hiaa result is back – he tells me it’s on the high stage – it’s sitting at 175.  Oh gosh it’s been high for a while but never this high.  Asks about my weight – I’ve lost one kilo.  Doesn’t appear to be a big deal for most folk but when you are shovelling food in and drinking 5 fortisip/ensures per day and on a 10 hour per day tube feed you don’t expect to lose weight.  The decision is to wait and see.  Keep going with the status quo.  Keep taking the meds and my lanreotide injection.   After my hospital appointment we go to town and I get spoiled for my birthday.  We then head up to see my dad.  My sisters are there – we chat and have some birthday cake.

Steve spoiled me for my birthday. One of my gifts was something I have always wanted – a kenwood stand mixer.

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Friday – a forced sit down day, in preparation for the party we are going to this evening.  It’s lunchtime and I fancy some ginger bread.  I start to eat a slice.  Suddenly I feel peculiar.  My tube feels as if my tummy is sucking up the tube – pulling it from my insides, yanking at my nose.  The tube is getting sucked up my nose, my right cheek and eye are distorted.  My facial expression was a great impression of a geurnist.   I grab a glass of water and gently drink.  At last the tube stops moving and everything starts to feel better.  It all feels a little strange.  The feeling as if something is stuck somewhere between my stomach and my nose.   We get out the syringes and the ph testing strips.  I attempt to draw up some juices from my tummy.  Nothing.  Let’s try the other way; push some water down the tube.   Get some sterilised water and draw up 60mls.  Will it go down the tube – will it hell.  I gently use a push pull action with a fresh syringe – at last we have some stomach contents.  Ph level of 3.5 – just perfect.  Now it takes the 60mls of water.  The relief.    After all the commotion – I enjoy a relaxing afternoon before seeing the family at a party in the evening.    Back home for 11pm – get myself linked up to my pump for the next 10 hours.

Saturday – shattered.com  I manage a wee trip to the shops to buy some baking trays.   That’s the highlight of the day.

Sunday – the anniversary of my mums death.  2 years to the date – August 9th.  It doesn’t get any easier.  My Mum was such a big character.  Left a huge void.    I miss her more today than I did one year ago.  What I would give for two minutes conversation with her.  Just to touch her skin, or hear her call my name would be a wish come true.


It’s Monday again.  Resembling Groundhog Day.  Dragging my feet, got the nurse coming in.   It’s 9.15am and the nurse is due anytime soon.  My tummy starts to do an impression of an erupting volcano.  🌋. I get some extra ondastetron down me.   I start to feel the tube tug.  I make a quick dash for the bathroom.  I’m sick, it feels so weird. And to be honest a little scary.  It’s rank 😒 .    Back to the push pull technique and then I flush it with two syringes of water.  All feels better.   Thank goodness.  Shortly the familiar voice calls.  It’s Eveylln the nurse.  ‘Oh my you don’t look do clever today ‘ is her opening statement.  ‘Think it best you have a snooze shortly She changes my dressing, checks the tube.  It’s still at 54 – no change; that’s good news.  We discuss how I’m feeling.  The small difficulties I’ve had with the tube come into the conversation.  I do tell her the benefits arehuge.  Not having extremely low blood glucose levels through the night is a big bonus.  It’s been two weeks with the overnight feed.  Getting up through the night to go to the loo is now much easier.   I’m not staggering along the hall in a semi consious state trying to figure out how to get to the bathroom before I shit myself.   I still get up a couple of times through the night with the nocturnal diahrea.  I certainly don’t miss the through the night warming up food, checking out the fridge and drinking fortisips.  The overnight levels are something to write home about.  Fantastic not to be dipping to 1.8.   It’s not ideal going around with a nasogastric tube.  However, for the immediate future it’s a permanent fixture and its doing a grand job and I’m ever so grateful to all the help that’s coming my way both from my family and the healthcare professionals.  For the time being this is “my new normal”