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

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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Introduction to nasogastric tube feeding at home

Into our sitting room walks the friendliest chatty lady.  Armed with a Hessian Tesco shopping bag, not filled with shopping, not bearing gifts of food parcels,   And no lovely sweets to munch.  Instead there were items that were unfamiliar to Steve and me.

Steve and I sat together on the sofa like a couple of school kids niavely watching in anticipation.  Gwen, the nurse specialist methodically explained the whole process.  She was very thorough and hands on.  Carefully telling us how to set up the pump, what tube to use, checking the ph level, flushing the feed tube.   After an hour or so of first time training Gwen left.  She gave us an abundance of literature to read through.  We both felt fairly confident in using the pump and setting up the feed.

Thursday morning came.  Steve and I arrived at the hospital early.  Time for a hot chocolate and malt loaf at the hospital cafe.  We toddled up to the ward.  Lovely nurse Stacey was waiting for us.  She took us to a designated room.  She came in with a loaded trolley. Amongst other things on it was the tube  and a cup of water with a straw.    I asked how I should sit on the large comfortable chair.  The nurse was very reassuring and said I was to sit in whatever way I wanted and she would work round me.  I got comfortable the nurse measured the length of the tube against me and then was instructed to rest my chin on my chest.

The procedure was just about to begin.  She lubricated the tube and then inserted it into my right nostril.  I’m not going to lie, I felt nervous.  As the tube was pushed in I felt this pain up my nose.  It was as if a bee had stung me.  I remember saying oh that feels awful, rather sore up my nose.  Simultaneously the nurse said we are in the back of your throat and ready for you to take a sip of water.  As I drank from the straw the tube was fed down.  I knew co-operating would make swallowing the tube much less painful and it would all get done a lot quicker.   Voila – it had now entered my stomach.  Carefully the nurse secured the tube to my face.  A large plaster covering 90% of my nose and a transparent dressing on my right cheek. Now to check the placement – the nurse put the syringe on the end of the tube and started to draw some contents from my tummy.  Nothing.  Oh !  Of we went to X-ray to check where the tube had gone.  Had to make sure it had gone into my stomach and not entered a lung.   The guide wire had to be left in.  This would give an accurate image on the X-ray.  The great thing with modern technology is by the time we were back at the ward the doctor had seen the X-ray on the computer in the ward.  Great news it was in the right place.  Steve got me some orange juice, I drank it.  Fingers crossed we would get some contents now to check the ph level.  As the nurse drew up the syringe some of the orange juice I had just drank was now in it.  Carefully she squirted some fluid onto one of the strips.  Waited for it to change colour then compared it to the chart.  Ph level 4.  Perfect.

My dietician came to the ward to see us.  We had a frank discussion.  She explained all about building up my tube feed.  Gave us lots of good literature, together with do’s and don’t’s.  Also very useful telephone numbers just in case I need help.

I had a constant pressure in the back of my throat and my nose was really hurting by this time.  I was reassured this was all normal and would ease.  We left the hospital and headed home.

The next morning the district nurse arrived, basically to check in on me and give me support, change face dressing.  The plaster on my nose was stuck firmly.  With a bit of gentle tugging and pulling she got the plaster of and checked the measurement.  Good news the tube has not moved.

For the first few days I have to feed through the tube for 10 hours during the day.  Gradually building up the speed of the pump, allowing me to get more feed each time.  The feed is peptamen.  It’s partly digested and appears to be the best formula for my tummy.

Four days later and all is going better than I hoped.  My body is tolerating the formula.  I can confidently set up and use the pump, draw fluid from my tummy and check ph level, and can flush my tube.

My nose is still uncomfortable and my throat is now much less sore than it was even yesterday.   It wasn’t the easiest procedure I’ve had.   However a combination of keeping calm, a good clinician and having my hubby was my biggest asset.
  

Is The NET Natter support groups right for me?

Socialising

The Ann Edgar Charitable Trust (aect) charity offers a support network to people with nets, carcinoid syndrome and their families and friends in Scotland.  The charity works independently as well as working in association with UK charity – Net Patient Foundation.

As part of the support services.  Folk affected by nets & carcinoid syndrome get together – informally and socially.  We chat, share experiences and very often laugh loudly.  Gives a chance to air our views, meet new people and strike up friendships.

Yesterday was my hubby’s 49th birthday.  There was a meeting arranged for the same day.  I asked Steve if he wanted to go to meeting or give it a miss since it was his birthday.  Not everyone’s idea of a perfect birthday night – spending time with people talking about injections, bowel habits, surgery etc.  Steve being Steve wanted us to go.   So we went out for dinner one our own and then headed to meet the others.

When we arrived at the pub the others were sitting at a large table in the bustling pub blethering away.  As usual a warm hello from everyone.  The pub setting is and ideal location.  Far away from hospitals; this non clinical setting Allows you to drop your guard and open up.  You find yourself sharing and telling of what has gone on since we last met up.  While friends and family can be a lifeline offering support and help sometimes I find myself halting and not actually saying how I really feel or how things have been.   The group has a very relaxed atmosphere and when you share an experience you do know others know how it really is.  Nothing helps better to lift the weight when someone says to you, yes I understand or I know how you feel.

Last night was the first meeting since Anne passed away.  I was feeling apprehensive.  It was anne that would tuck a label in whenever it was showing, grab my cheek softly with her index finger and thumb and ask how I am. Anne was such a loving friendly  lady who had time for everyone.  Her smile, kind words and sense of humour is what I will miss most.

Five minutes in and the knot in my tummy had subsided.  Sitting on the table was a large cake box.  Barbara, one of the members had baked a cake for Steve’s birthday.  Everyone was chatting away, talking about all sorts.  While we do share health experiences, we do actually talk about our everyday lives, our families, etc.  as well as football, golf, TV, holidays, and much more.  We had a newbie and her husband last night.  I’m sure she got a lot out of it and will be back.

An hour and a half in and we all shared Steve’s cake.  Barbara is a wonderful baker and the cake was delicious.  Conversations were flowing and everyone appeared to be relaxed and at ease in chatting.  The great benefit of the group is there is no cliquieness.  I’m sure even though it was a first social meeting for two of the people there they felt welcome with no awkwardness and able to talk freely.  As a group there are never hard and fast rules.    There is no fixed agenda or timings. You can stay for as long as you want or have the time.  No one would take offence if you came for half an hour and left or if you stayed for the duration of the evening.

We arrived at the pub at 7.40pm and left at 10.30pm.  On the way home in the car, Steve and I chatted about our personal feelings of the evening.  The half hour journey home flew in :  probably due to the pair of us nattering.  Usually I am tucked up in bed by this time.  I guess going out and meeting the others had me wrapped up in conversation and even gave me positive energy.

To think I was sceptical of going to meetings.  Worried they would be unwelcoming and regimental with rules and a set schedule.  I shouldn’t have been doubtful in the least.   I’m looking forward to our next hook up.

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Third day in my pjs and my faithful labradors

 

Buddy and Bella              Buddy helps with fortisips

 

Thursday afternoon, was feeling very very tired.  To that point that you feel your legs just can’t carry you.  Teatime – dire need to put my pyjamas on.   The whole afternoon I slept on the sofa, with the exception of the times my Labrador, Buddy, would wake me.  He would look at me and if he could speak he would say mother just try something to eat or drink a fortisip.

Buddy is a wonderful golden Labrador.  He follows me around everywhere I go.  Sits patiently in the bathroom, always at my feet or by my side when I’m sitting down.  Accompanies me to kitchen, stands and looks at the fridge – I know he is wondering if perhaps he can have something to eat.  When I’m in

bed, his duvet bed is in our bedroom.  I’m up at night – Buddy is up at night.  He carries clothes through to the washing machine.  Most importantly he knows when my blood sugars are dropping too low.  I can be in a sound sleep, I will suddenly feel a paw on my shoulder; tap tap.  I open my eyes to see his big square head looking over me.    On checking my blood sugar levels after buddy has woken me – they are always around the 2.5 mark.  He has an instinct that i need to drink one of my fortisip Drinks.

As well as Buddy we have Bella, she is also a golden lab, 2 years younger than Buddy.  She doesn’t quite keep as close as Buddy.  However, if I am home alone.  Or on a sofa on my own, I will have a Labrador on either side of me.  Bella is protective of me, keeps her ears open for anything out of the ordinary happening.  Bella is just as faithful, and is learning the household duties and definetly likes to carry things for you.  The softness of the labs mouth, they will carry something for you for a considerable time or distance and will not damage or mark it.  however she is a Daddy’s girl and knows what side her bread is buttered on – she very much looks forward to Steve’s cuddles, playing football, letting them run free outside with him.

Friday, I was violently sick.  While shouting hughie down the loo I had both Labradors in the family bathroom with me.  I was sweating and Bella was gently licking my feet, I know to many that sounds yuk, but for me it was comforting and when your heart is pounding in your ears it’s good to know someone or something is looking out for you.   Buddy takes charge and sits upright by my side as I grip the pan.  If he could hold my hand he would.  At last I’m sure nothing more can come out.  After composing myself to get back to the sofa, we three walk along the long hallway together.  Bella taking the lead and Buddy walking by my side.  Bella only one step ahead, normally she would run along the hallway.  This day she walks slowly at my pace.  Her ears pinned back listening to my every move.  I get to the sofa, fall asleep and wake up an hour or so later:  both dogs faithfully down at my feet.

Saturday felt like a nothing day.  Disappeared so quickly.

Sunday – today.  The first day I feel up to making a cuppa.  Brian and Margaret popped in for a visit.  I’m not very good with visitors when I’m feeling rubbish, but there are some people that you don’t mind calling on you at any time.  My brother Brian and sister in law Margaret are in that class.  They don’t mind if they don’t get a cuppa, or the dogs hairs need vacuumed.  And I don’t mind what I’m like when they come.  They want to visit regardless – which is lovely.  They brought me a beautiful present.  A zebra picture.  I love it.  Buddy loved the cuddles from Margaret too 🙂

I thought I would bath and get some slacks and a t shirt on.  Alas, it’s 4.45pm – I’m washed and in fresh pyjamas.  My labs don’t mind as long as they get a hug. It’s a slow evening snuggled up on the sofa.  And I think after the busy week my hubby has had he is benefiting from chilling on the couch.

 

Too much ‘happy clappy’ chemicals

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One of the tests to confirm carcinoid syndrome is a 24 hour urine collection.  The test is called 5hiaa.  the level of serotonin excreted into the urine is measured.  From day one my levels have always been elevated.  As my doctor would say results are on the high side.  Serotonin is a feel good chemical.  A doctor was once described it to me as your happy clappy chemicals are very high.  I believe this is why I do not get down in the mouth and my glass is half full and not half empty.  I try my best to keep upbeat and positive.  With a wonderful husband and beautiful family such as mine it makes wanting to be happy relatively easy.

The test is simple enough and can be done at home.  As long as you remember to pee in a urine pot and then pour it in the designated container.  The container has acid in it the last thing you want to do is put your ****** over the containers and have the acid vapours direct themselves at you – most of us have enough problems without adding to them.  My main issue is trying to pee and not poo at the same time.    As well as reducing the flushing the lanreotide injection has cut down the diahrea from 9 times a day to  loose bowels 3 or 4 times per day.  I’ve perfected a stance that allows me just to collect the urine.  I certainly wouldn’t win any prizes for looking cool but it gets the job done 🙂

I start my next 24 hour collection for 5hiaa in 7 hours time.  I’ve been practising my pee positioning all week.

Some happy news

This week was a tiring mixed emotional one.  My hospital admission.  Death of a friend.  Body and brain in overdrive.

Sunday brought happiness and celebration.   Our youngest son, Stuart, arrived at the house on Sunday lunchtime with Christine and Grace.  After the usual blethering and noise for the first five minutes.  Stuart announces he asked Christine to marry him and she said yes.  As parents Steve and I are so pleased that things are going on the right track for the youngsters.   We always worry about our children and I think more so the older they get.  There is something frightening for a parent when a child reaches that independent age and starts heading off in their own direction.  Our philosophy is not to interfere or tell them what to do.  We would rather support our boys and let them know they are loved and we are there for them 24 hours a day.  I can still hear my mother say I worry more about you now you are an adult than when you were in nappies; my boys are 25 & 27 and I can definitely relate to this comment.

 

Stuart, Christine & Grace     Stuart, Christine & Grace

 

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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