Nets/carcinoid Syndrome · Tube Feeding

 A Further Eight Days In Hospital :  December 4th 2015 to December 11th 2015

We arrived at Edinburgh’s Western General hospital. I only sat down in the waiting reception for a couple of minutes and a nurse came with a chariot to take me to a bed and get me clarked in.  One of the consultants gave me a thorough going over.  Well the question is, how long are we keeping you?  She asks.  Steve prompts a reply well anything less that five weeks is a bonus, but it would be a preference to have her home for Christmas to share a Brussel sprout or two 😀 The consultant broke into a smile and said. No promises but be will do our best.  Within an hour and a half I had been booked in,  blood taken , urine sample given, cannula inserted, porter called and I was now getting wheeled along to the ward.

I get into the ward of four, the nurse helps me out of the wheelchair, and assists me into the bed.  She points out where the toilet and shower room is.  After explaining everything to me, she placed the buzzer close to me and said if you need anything press the orange button, and we will come to you.   I thanked her.  Steve put my things in my locker, spoke to the nurses, and then came back to see me, gave me a kiss and hug and headed off home – for Steve it had been a long day.    I looked round the room.  In the bed opposite the lady was sound asleep propped up with several pillows,  the bed next to her, the lady was awake, hello I’m Jess she calls over to me.  The bed next to me has an elderly lady who informs me she is going home in the morning.  She seems so happy about it.   All in all three elderly ladies, a quiet room, an exhausted me, hopefully I will get a sleep.

I did sleep, the staff were brilliant and the room mates friendly.  The lady went home and we got a new patient.  Jess and I talked away like a couple of school kids,  we laughed and joked and had so much in common – I’m 49 and Jess is 87 years of age.  Anne the lady opposite me was very deaf. It made conversation difficult.  My consultant came to see me and it was decided no food was to be taken orally, the only fluid was when I was taking my medication.  And it was to be minimal water when taking meds.    The lack of oral fluid takes a wee bit of getting used to.  Your mouth feels perched.  Your lips press together tight.  The nurses are very kind and supply you with endless nice cubes and foam lollies, you can clean, rub your mouth and or throat.  It really does help.  Mouth wash helps too.  The dietician came too and the plan was to continue feeding through the pej at 100 mls per hour for 20 hours out of every 24 hours.

Consultant visited next day – we chatted.  Talked about how we thought the hole may seal up. I told her about us watching supervet, the honey helping the cat.  My dedicated husband digging out honey out of the cupboard and unfortunately how unlike the cats jaw repaired fairly quickly my tummy was sticky and clothes sticking to me.  She looked at me and said Elizabeth what were you doing with the honey?   I laughed I explained Steve spread it on a half slice of toast and it leaked out as soon as it was in.  Thank goodness for that she said.  I guess she watched supervet.  He actually rubbed the honey on the cats wound.  I think she had visions of us rubbing the honey on my tummy – no such luck – ha ha ❤️

The nurse came to do my flush on my pej.  Oh boy was it difficult to flush.  It actually took 15 minutes to get 50mls of sterile water though the syringe.  The tube is so fine.  Attached to my tummy is my pej and then my feeding pump.  When I get my 4 hours of, this is when I want to shower.  I am still attached to the dextrose drip – for the fear of having a hypo on their watch.  But after being on TPN ive mastered being able to shower with such gadgets.   Once the flush is done. I prepare myself for my expedition.  The walk to the toilet is still a difficult one – I do it in a couple of trips, trot along carrying two towels and using the drip stand as an aid – made the first trip to the shower room.  Now I will head back and get my clean pjs and toilet bag.  As I turn round, the nurse is standing there with my things.  Don’t you try and do all that on your own, we are always here to help , she said.  Got to admit I was so glad she brought them.  Now are you going to be ok?  the nurse asked.  I nodded.  I put down my clean pjs on the chair, and started taking what I needed out of the toilet bag.  I did the needful, managed somehow to get my clean pjs on.  As I was about to put my socks on I could feel the beads of sweat running down my back, I eased myself up from the chair, and decided to walk back to the bed as I was.  I really needed to lie down.  As I was walking over to my bed the nurse came and took my toiletries from me, put them on my locker and then quickly walked back and took my arm,  my you are very flushed she said.  Oh it’s the heat of the shower, I just need to lie down a minute.  I said.  She walked me back to my bed, helped me back into bed.  I was so grateful.  That shower had just sapped me of all the energy I had conserved in my body.   Half an hours rest and then it was time to get my feed back up and running.

A young man walks into our room, now ladies who would like to put a request on the hospital radio tonight.  I’ve been in hospital many many times – in fact I wouldn’t like to think how many hospital admissions I’ve had, and I personally have never listened to hospital radio.  Due to Anne’s deafness she didn’t take part, however the rest of us all requested  something.  His parting words were have a go at our competitions.  Makes the evening fun.

Teatime came – the three ladies had their meal .  I stayed attached to my feed.  My body must be fed – my tummy doesn’t even rumble.  They had fruit crumble for pudding  – one of my favourites.  It must have sent messages to my brain and got my gastric juices working overtime; when it was time fir a dressing change my tummy had been excreting gastric juices that resembled PVA glue – just the kind that it makes up on its own.  My brain must have been saying to the belly ha ha doesn’t this food look good, smell lovely.  That old saying my belly thought my throat had been cut but instead of rumbling grumbling noises I get leaking discharge.  Then visiting – which I always enjoy when my hubby comes in to see me.  I get a chance to see how he is, and catch up with the outside world.  Visiting finished at 8pm.

8pm was the time the radio show started.   The three of us put our headphones on.  The music played, the dj chatted – we bletherered over it.  Competition Time.  It was a mystery voice, we listened, the lady, Avril,  in the next bed said its Chris Evans.  I shouted out the telephone number to her, she dialled it in her phone, hey presto its ringing she says. Oh my goodness I’ve won. She says, i have never  won anything in my life. That boost fair cheered us up.  We listen some more and sing along , the DJ tells us another competition is coming up shortly:  this time sport.   The question is how many people watched the Fifa World Cup world wide in 2006.  There are three options. I’ve heard this question before.  I know I have, the answer 26.29 billion jumped out at me.  I shouted out the answer.  Jess said phone.   I picked up my mobile and dialed the hospital radio number.   Engaged tone.  Try again.  Jess shouts over.  I try –  beep beep:  rather than a melodic ringtone.   The music stops on the radio, that’s it, the dj will announce a winner I’ve resigned myself to defeat.  The dj’s cheery voice makes you smile, he introduces a chap called Gary on the line.  Gary is calling from The Edinburgh Royal Infirmary.  He is asking for a request.  The DJ then mentions the completion.   Oh I’m no good with mystery voices.   He says.  It’s ok Gary, Avril won that competition, we are onto a new one.  He asks the question again.   I’m not sure  says Gary,  but at least I can just guess A, B or C.  At this stage I’ve got steam coming out of my ears.  My competitive streak wanted him to get it wrong so I could phone in.  He answers.  Oh sorry Gary, that’s the wrong answer.    Both ladies and the nurse that was in our room at the time cheer.   I phone again. It’s still engaged, I look up, both ladies in chorus –  keep trying.   So I do.  Finally it’s ringing.   He asks me the question.  And yes I get it right.   Competition winners receive borders biscuits.  My reward was different and I was pleased with what I won.  A mug and a key ring.


All that excitement had tired me out.  It was 10pm.  Time for the late night drug round.  The nurse came round and did all our meds.  The other nurse did our obs and then it was time for my next feed.  The familiar beeping of the pump to let me know the feed was finished and time to change.  The nurse came to detach the finished feed bottle, flush the tube, check the peg site and then restart a new feed for overnight feeding.   The nurse came armed with a syringe, and sterilised water.  She drew up water in the syringe.  Carefully attached it to the appropriate part of the peg and pushed to get water into the tube.  We looked at each other. The syringe was locked tight.  It wasn’t budging a cm.  she tried to push harder.  Nothing.  Her face was rosy pink.  This isn’t budging.  Does it ever get like this.?   She asked me if it often gets like this.  I answered with  its frequently difficult to push but never as hard as this and I’ve never not been able to put water through the tube.   The extension is a very fine tube and much longer than the original gastrostomy.    I think I need some help here.   She said.  We abondoned the feed.  She paged the on call doctor, since it was now 11.50pm.  The duty doctor came.  It wasn’t budging for them either.  A decision was made for the night.  A dextrose drip would go up to maintain my blood sugar levels and a GI consultant would come see me first thing in the morning to do something with the blocked tube.  And overnight the nurse would regularly check my blood sugar levels with the finger pricker to make sure the drip is doing its job.   It did.  

8.30am – the GI consultant was standing at the bottom of my bed.  Well trouble what are we going to do with you now    He said in his thick Irish accent.  I grinned at him and replied unblock this tube if you know what’s good for you!   He drew the curtains round the bed.  Then got the syringe and attached it to the tube.  He wiggled and pumped back and forth.  Nothing.  He detached the syringe.  He then pulled the tube slightly back, I could feel a strange feeling in the pit of my stomach.  Oh that’s a tad sore  I say.  Yes you’ve gone a whiter shade of pale was his reply.  Just bare with me, please,  ive got a plan he continues to say.  So I lie there and wait in hope.   He pours sterile water into a beaker then draws it up in the syringe. He attempts to push some into the tube, it’s still not moving. He uses the push pull method once again and then all of a sudden WHOOSH!!!! Me and my bed are wet. Water and gastric contents on pjs, face, hair, and bed linen.  The doctor tries to apologise.  While laughing I’m thanking him for unblocking the tube.  Im so relieved.  And much more comfortable.   The nurse joins us and starts cleaning me up.  The doctor leaves us and goes attend to something else.  Half an hour later I’m in clean fat face pjs, got the hospital bed propped with pillows my blankets, iPad, writing material.  Looks like I’m all set for lying on a sun lounger by the pool in Ibiza not getting ready to try a feed.  The blue curtain round my bed slowly moves, a voice quietly asks,  is it safe to come in Elizabeth?    It was the doctor who just unblocked my tube.  However, he was more concerned with drenching me and the bed.  I tried to put on a grumpy stern face and say I was annoyed.  I couldn’t.  Soon as I saw him.  We both laughed.   Let’s try the feed then he said.  And so we did.  It worked.  For two days,

For two days all I had was feed via the gastrostomy tube.  The only thing that went down my throat was my medication.  On day three the tube blocked again.  This time there was no flushing it.  I’ve got to admit it was getting scary.  The consultant explained he couldn’t push too hard with the syringe for the fear of the tube explicating.  That statement terrified me.  There is only one thing to do – take the jejunostomy tube out.   Once he had actually said the words – take it OUT.    I wanted it removed NOW.  So I got my way.  It was removed while I was in my hospital bed in the ward.   Got to say it was a strange sensation.  There was a slight tugging feeling.  Then my tummy felt like it had never before:  the doctor carefully pulled the tube at a slow steady pace.  This wasn’t an experience I was comfortable with.  I lay still and thought it best to co-operate in any way I could.  My whirlwind tornado tummy had died down.  As he continued to pull the tube gently, gungie watery gastric juices ran out as the tube was easing out.  Then there was a click.  At last the end of the extension tube.  That was it out.  Thank goodness.  Doctor and patient both relieved.    

Time to Take the big step back to straight forward gastrostomy feeding  (peg) .  Sort the feeding regime with the dietician.  Start of on a very slow rate with my pump.  Just 20mls per hour for 5 hours.  Remember I haven’t been fed direct into my tummy and how much am I going to leak.   Five hours later – dry dressing.  I felt like a toddler that had gone all night without peeing the bed.  The nurse came to flush my tube and check everything is ok before increasing the rate.  And so the rate was increased gradually over the next 24 hours until I reached 80 mls per hour.  At this rate there is a leak when the feed goes in, but only a slight leak.  I asked the consultant when the hole would seal up and I would stop leaking his answer was how long is a piece of string.  I just don’t heal as well as some people.  And take much longer than others.

  • We had a discussion at the hospital and decided I could go home on my feeding regime with
  • The support of my district nurses coming in through the week to do my dressing, check the tube in general, deal with my skin, give me my lanreotide injection,  and any other general medical/physical/emotional support they always do
  • Community dietician coming to the house very regularly to check on feeding regime,  change my prescription if need be. Give instruction on changing connectors for tube. Take my weight.  Give us general support.
  • Regular contact with my GP.
  • Home support from my hubby, and boy do I get this ❤️

Well the staff at the hospital had been tremendous, my room mates were great company for a bunch of sick folk.   I even managed to get some online Christmas shopping done – I bought a couple of bits and bobs or Steve, Tony and Stuart.   But I’ve got to admit I was ecstatic that I was leaving them.  The thought of Our own sofa with my Steve, Buddy and Bella was just what the doctor ordered.   I yearned for my home life back.

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Nets/carcinoid Syndrome

Leaving hospital after five weeks in the ward

The decision to discharge me from hospital wasn’t taken lightly.  My tummy was still leaking when I had any oral intake.  My body was tolerating the feed through the pej which was the important thing.

The drive home was wonderful, I soaked in the scenery as Steve drove us home.  I appreciated all the countryside I had missed seeing while being couped up in clinical clean setting.  As we drove along the A1 I watched a ship sale down the river forth, a sight I normally took for granted.  You don’t realise what you miss seeing when you are confined somewhere until you are actually back out there again.  We rolled up in front of the cottage.  I was so excited to get in and see the dogs.  I had missed them so much.  As they had missed me.  Buddy and Bella were fabulous when I went in, no jumping up to welcome me.  They were so happy, wagging tails furiously sitting at my feet.then running up and down the hall.  Buddy getting my slippers. Tilting his head, looking at me – with a big grin on his doggy face and if he could talk I’m sure he would say “it’s lovely to have you home mum”. I’m a bit of a nutter and I imagine what buddy’s voice would be like if he could talk.  He would be rather proper, roll his R’s and mind his P and Q ‘s.  I’m sure he would have a fairly deep voice,  and always be ever so polite. After all he is a pedigree – ha ha.

Steve had the house just perfect.  Heating was on.  Everywhere was so fresh and clean.  He had bought a beautiful new duvet cover, pillows and sheets for our bedroom.  It looked fantastic.  And so inviting.  I was so tired I couldn’t wait to get into that bed.   Steve got all my things unpacked from the hospital; believe me there was lots to unpack.  It’s amazing what you accumulate in hospital and all the lovely gifts you get whilst you are in.    Once organised it was time to set up my machine and feed through the pej – this was my peg feed with a jejeustomy extension. Basically fed further down,  bypassing my stomach giving the hole a chance to heal.  The down side is the tube is very fine and very long so I can’t bolus feed only continuous with the pump.   The other is I have to feed attached to the pump at home for 20 hours out of 24.  However, if it helps me heal, keeps my blood sugars up and maintains my weight.  I will go for this.

We get organised, set the feeding pump up and settle down for the night. Tomorrow we have the district nurses at 10am.

10am that familiar hello it’s only me rings along the hall. Evelyn the district nurse with her smiling face plumps her bum down at my feet on the sofa.  How are you kid?   She asks.  We chat about my time in hospital.  She cleans my peg site.  Looks at my arms, –oh dear what’s been happening here? I explain when I was in hospital I had micropore on my inner arm for five minutes.  Now it’s all blistered and sore.  Evelyn puts a dressing on it.  She then gives me my lanreotide which is due that day too.  Full service on the sofa.  After I’m dealt with, buddy and Bella come through to see their favourite nurse.  They love her coming, as always buddy sits at her feet and tries to sneak a kiss like a naughty school boy.  All the district nurses that visit are very friendly, good, very caring and more than competent at their job, all with an excellent bedside manner.    And whichever nurse visits I know I will get first class treatment, well looked after, all my questions answered, and a bit of a blether.  You shouldn’t have favourites but I do, and Evelyn is one of mine.  She takes time to talk, always asks how Steve and the boys are.  Thinks of things and advises us on all sorts of useful matters.  Like organising my mattress lift, getting my cavilon prescription for my skin, taking letters to the doctors surgery and much more – if you say that’s brilliant thanks – she will reply it’s my job: well I know it is but I also know she goes that extra mile.  I can hear Eveyln’s brain thinking what would be best for Elizabeth.  She takes time to talk not only to me but to my hubby and sons if they are around.

 

 

The next day we muddle on together, Steve looking after me like I’m a princess, catering to every whim.  While my nutrition goes through my tube.  I still have use of my throat and swallowing mechanism.  It was recommended that I try and eat very small portions, no meals as such.  Mainly for my mouth hygiene. I also used mouth wash and foam lollies & ice.  Steve and I love the TV show supervet.  There was a cat with a wound that would not heal – bit like me – vet cured it with honey.  Gave Steve an idea.  Steve made a a slice of toast and put honey on it.  I ate half a slice.  Got to admit I really enjoyed it – I love honey – and the taste and feel of something in your mouth when you haven’t been well and have not eaten for a while is a wonderful feeling.  Shortly after eating the toast I checked my dressing, oh my goodness, dressing and tummy covered in honey.  I needed an appointment with my GP to discuss pain management, my wound, and a few other things.  Steve called the surgery.  I had an appointment for the very next day at 9.15am.

Up with the lark we get ourselves ready, or should I say Steve gets us organised.  Everything perfect to the last detail.  I’m hooked up to my feed.  He has put my pump and stand in my favourite Gorjus rucksack that Brian & Margaret bought for me in Ibiza – all tubes safely tucked away – no tripping zones.  Wheelchair in the boot, just in case we can’t get parked in the car Park and it’s too far to walk.

Great there is a space right at the surgery – sun shining on us at last.   The walk to the waiting room was a mean task – but I did it and I’m damn proud of it.  We didn’t wait long and then the GP opened the door and called me.  Just take your time – your pace.  She says.  In her consultation room we discuss my time in hospital, my pain mamagement and she voices her concerns that I am home with an open wound with leaking gastric fluid.  And still in some considerable pain.  She gently touches my inner arm and I winced.  My what’s up here.  I pulled up my sleeve.  And she saw the dressings that were put on two days ago by my district nurse.  It was decided to take a dressing of.  As we took it of together a horrid stench filled the air and a nasty looking greyish green pus ran down my arm.  The good thing was the dressing had brought all the bacteria to the surface, now we needed all the awful stuff to leave my body.  Oh dear we will have to get the treatment nurse to look at this now.  But firstly.  I will write you a prescription for antibiotics.  Once finished with the doctor, Steve and her took me through to Yvonne the treatment nurse.  Yvonne, carefully patched me up.  Cleaning my peg site, then using iodine on my arms then dressings to cover up all the infected areas.   Yvonne, as always was fantastic, not always fixing me up physically.  She listened,  gave me a willing ear – an emotional crutch for a few minutes just when I needed it.   Yvonne took me back out into the reception area and instructed the girls on the desk I needed to come back in three days.  She said to me see you in three days, but if you feel unwell get the district nurses to come to you and do the dressings, do not come out if you feel unwell.  And she said to Steve best get that wheel chair to get her to the car.   And so he did.

Day 5 home from the hospital I had a visit from my community dietician, Marion.  She deals with all my orders for my feeds, my pump, etc.   Marion visits me at home offering information, advice and general moral support.  When we started talking about how I was feeling, how much was still leaking out Marion wasn’t too impressed.  She felt it wasn’t too good for a home situation.  She discussed things with Steve and I and asked if she could talk to my gp and my consultant at the hospital and let them know her concerns.  Her main worries were I was not getting enough calories in to satisfy my hungry malabsorbing body and the leaking peg site was not ideal.   I don’t know what weight I will have, I’m after all only a mere dietician she said.   But leave it with me.  

We managed together for the next couple of days.  It wasn’t always easy.  I was fatigued.  Tummy sore. Peg site leaking.  The home phone rang.  It was our GP.  Elizabeth, how are you feeling?  I answered truthfully.  She came back with I’m just off the phone to your consultant at the western general hospital – he wants you to go into hospital today.  How do you feel about going in now?  It took the wind out of my sails, however I knew it was the right thing to do.    Steve packed me a bag, as he did, I wandered into the kitchen and gave my loyal labrodors, buddy and Bella a hug each.  I won’t be away as long as last – promise ❤️

Nets/carcinoid Syndrome · Tube Feeding

The Move to ward 107 – stayed with them till November 25th 2015

So I was on Total Parental Nutrion (TPN).  Nicknamed Dracula food by Steve & me.  We have loved having you the nurse said but your in demand, ward 107 want you.  It’s only across the hall way.  You don’t need to do anything.  We are going to wheel your table, bed with you in it, and all your belongings.    Paula and Esme took charged of my bed and my TPN.  You have to be skill full in maouvering, especially when the there’s a patient like me hooked up to a feed and have a picc line in my arm, they are moving the bed and moving the pump stand .  All went well.  Paula made sure i had ice cold water; which she always did.  Both ladies were very attentive in 106 I would miss the wee snippets of conversations or when you were feeling a bit down or needing something they would notice – I guess there will be staff in 107 that will be the same.  Looking back the nursing in 106 wasn’t just physical support the emotional support was invaluable.  When I had the episode of tissue oedema – Michelle was wonderful and spent time with me.

I’m in my new room of four.  Hopefully I won’t be here too long.     The other three beds had patients in them.  The bed opposite – a lady in her 60’s: Susan,  the bed beside her – a lady in her 50’s and the bed beside me had the curtains drawn with a lot of complaining.

It was the following morning I met my camp mates.  The lady opposite – Susan – we became chums, helped each other, gave a willing ear to one another.  The bed with the lady in her 50’s – we called the bed the lucky bed.  Most people only stopped overnight in that bed.  The bed beside me was quite another story.   I nicknamed the patient “the gringe” – she was  feeling miserable, had been in hospital for over 6 months.  She said it herself in some ways she was desperate to get away from this place and in another way she felt safe and secure.  Rather sad really.

The doctors/consultants/surgeons were the same as previous.  Thank goodness Bev the dietician is still looking after me.  She pops into the ward everyday, between one and three visits a day depending what there is to discuss.    The nurses on the ward are all efficient, many of them are upbeat and help boost moral.

Day 11 of the Total Parental Nutrion (TPN) and I’m still leaking, the pain in my stomach doesn’t want to subside.   The ward round is early this day,  the usual gathering of doctors and surgeons round the bed.  They examine me, listen to how I’ve been, they explain they would have something they would like try.  Since I cannot get fed from the peg at the moment – even at at 10mls per hour it leaks.  New plan put in an extension tube.   The extension is called a jejunostomy feeding tube.  It was to get put in that day in endoscopy.  Cripes no waiting around.

So what’s the jejunostomy feeding tube?  –  The procedure was done down in endoscopy.  Basically I was going to get a 6 foot very fine rubber tube inserted – it would go through my stomach and threaded through my intestines till it reached the jejunum.   It will allow the feed to run through and go into me,  It shouldn’t leak since the feed will be going a lot lower down.

The nurse comes over to me  – “time to get you in  a gown” she says,          ” they will  be taking you down soon”.    She had to help me I’m still attached to the TPN – that’s not allowed to get disconnected, so one arm has the cable running to the Dracula food.  She carefully and skilfully helps me manouevre out of my pjs and into the gown.  At first it was all awkward, wondering which arm goes where, thinking about stuffing cables and large bag of  feed into arm holes of tops, making sure everything is the correct way round and not inside out.  Pjs off – gown on.  All ready.  I will go for a pea.  Now I am ready.

The porter comes for me.  The nurse has to come down with us,  because I have TPN running.  I’ve arrived.  The staff are waiting on me.

I sign the necessary forms, get introduced to the four staff in the room. There are two doctors doing the procedure and two nurses assisting.  First thing get a new cannula in.  As ever it took a few attempts to get the cannula in, thankfully the doctor was a gem, she was gentle.  All set for the sedation so I wouldn’t remember a damn thing 😴.    Next came the delightful mouth spray – tastes of banana – really numbs the mouth and toungue.  Then the nurse gently put on blood pressure cuff, sats monitor and oxygen.  Then my least favourite – the mouth guard.  It was carefully placed in my mouth and strapped.  Then I was turned on my side.  They were Blethering away to me,  and said we are going to put the sedation in now.  That’s the last I remember – thank goodness.  Next thing that’s clear – truthfully is the next day.   I know Steve visited me and my sister visited me – only because they told me.

We got the feed up and running. All attached and running.  Bev recommended running at a low rate to begin with.  So for the first 24 hours the TPN would still run,  I would get goodness from two means,    Once the rate was up and all running ok, I got the TPN down.  The decision was to feed through the extension for 20 hours of 24 – giving me 4 hours of freedom.  Ya beauty.  This was the first time in four weeks I was not linked up to something for 24 hours per day.  A step in the right direction.  Big smiley happy face that day.  

Bev had sorted the dietary requirements so I would be getting plenty of calories:  the downside to this was changing the feed very late at night.  One night.  The nurse was doing my flush and putting up the feed.  We heard a commotion behind the screen.  It was Susan.  She was buzzing to get up to the toilet.  The CSW came to her,   She was short and dumpy, perfect bobbed hair, although she waddled she actually looked like she floated.  She was very cheerful,  when she spoke to you no matter how you felt you couldn’t help but smile.  She had a big heart and a big laugh.  “how can I help sweetheart”? “I need the to go to the toilet and I can move – I’m strapped down to the bed”  the little dark haired lady looked at her slightly puzzled, ” you daft moo your not attached to anything – think you have been dreaming” she said.  She waddled away, chuckling to herself, you  know it’s going to be a break time conversation.     Small incidents like this kept me going.

I was in hospital for five weeks.  Eventually.  We had a feeding regime.  I still had a painful tummy.  And boy was it still leaking gastric contents.  I asked how long would it take for it all to heal up.  No one knew how long it would take.  The time had come to take the big step.  I was getting discharged.  Home to our house.  My own bed.  Snuggle in with Steve – see my buddy & Bella.  Smell the fresh air – oh yes can’t wait.  It was four days later than originally planned, my discharge papers were done, meds done, Steve came to pick  me up for 4pm.  District nurses and GP phoned – organised for next day.  Community dietician & consultant at western general phoned.  All sorted.  So excited 😀.

Nets/carcinoid Syndrome · Tube Feeding

Some ward time to make me better

The nurse and porter transferred me from the surgical obs unit ward to the surgical ward 106.  I was put in base a in a room of 4 ladies.  The staff were efficient and attentive and catered to every whim.  They made sure I was comfortable and had my buzzer right beside me.    All the strength that I once had seemed to have left my body.  What used to be a simple task – getting out of bed, walking to the toilet, felt like a monumental task.

I needed someone to help me get comfortable, and get in and out of bed.  I have graduated from the catheter to the commode and now walking to the toilet – woo hoo. Now I can walk to the bathroom with a stick in one hand  and holding onto the arm of the nurse with the other.

The next few days consisted of cleaning, dressings, obs, and pain relief.  Most of it, I slept away.  I was given triple intravenous antibiotics.  The nurses on this base have been fabulous. I’ve had a 10% dextrose drip up to maintain my blood glucose levels.  One of the awful symptoms of my carcinoid syndrome is spontaneous hypoglycaemia.  My blood glucose level drops at a moments notice.  The best way to avoid this is to keep something going into my body to elevated my glucose levels.  Since my peg feed is leaking, there is no chance of feeding me through it at the moment – a glucose drip will at least keep my numbers up.

In the other three beds patients came and went and I was still there. I was so tired and sore I didn’t take too much notice of who they were.

With the exception of hubby Steve.  Visiting in the first couple of weeks was kept short.  One of my visitorsin base a was my precious niece Lindsay.  She brought a picture and a story from her gifted daughter Sophie.  Sophie was at church on the Sunday and asked if she could read out her prayer.  She did.  It was for me…..I don’t think there was a dry eye in the church.  Sophie is seven years old.

 

So has came the day I’m moving from base A To base B.  I’m graduating, 😀 now managing to wash myself with a basin – woo hoo.  Actually the physical independence of being able to wash yourself is a fabulous feeling  even if you feel you have just gone 10 rounds in the boxing ring.  It takes five times as long to recover from getting washed as it did to actually get washed.

The room I moved into was friendly enough.  There were two elderly ladies in their 80’s and a lady in her 50’s.  We all got along.  The lady in her 50’s was in the bed that changed people every few day  The three of us were in the same room for two weeks.  The three of us looked out for each other, pressed the buzzer for one another when needed, shared stories and shed tears.  The three of us built up a friendship, that would last for at least the time in the hospital.  We had our own system of communication and helping one another.  When Mrs Mac struggled back from the toilet with her zimmer through the night and couldn’t get her oxygen back on, I would turn the torch on my phone shine it to her and guide her through the process of putting back on the nasal oxygen.  Would then shine down to her slippers and she would use her stick to push them under her bed.  When Rae couldn’t find her glasses we would shout over to her where they were.  When I got up to go to the loo myself – they both would buzz – I would laugh and say do you think I need two nurses to take me 😀 ?

The one time the ladies really did help me was when they heard me swearing.  I woke up my hair wet, the blue vest top clinging to my skin, beads of sweat running down my forehead.  I went to lift my hand to press the buzzer and found I couldn’t lift my arm.  It was a tonne weight. Using my other hand I searched around for my phone to try and shine a light.  OMG all I could see was something that resembled a football shaped fist.  My hand and arm was so swollen.  My instant reaction…. “For fu*****” .  Both ladies were instantly alarmed, put their lights on and called the nurse.  The nurse came.  Turned off the drip.  Took out my cannula and called the doctor.  I had tissue oedema.  It was not pleasant.  I had to get another cannula put in.  The bad news for me is my veins keep collapsing, they look big and juicy and then disappear at a moments notice – naughty little blighters.  After seven attempts the doctor got the cannula in.  All this at 4am.

As all this was going on sometimes I find it hard to smile, the pain in my tummy, the endless leaking, the hypos……….

One evening around 10pm I’m feeling particularly homesick.  My phone vibrates,  I’ve got a video call from my hubby.   It’s so wonderful to see our sitting room and our Labradors.  I call their names, see their ear prop up, oh that’s my mums voice I can see in their face.  I feel tears stream my face.  Warm happy tears.  What I would give to be on that sofa with them now.

We try a feed through my peg feed – just at 10mls per hour – bearing in mind my usual rate is 100mls per hour.  Three hours later we look at the site – it’s wet.  The 30mls have came out.  Abandon feed.  Bev the dietician comes to talk to me.  She is a lovely lady.  She has really kept me going.  I get weighed – I’ve lost 5 kg – Bev says I’ve spoken to Mr Paterson-brown, I think the best thing is to put a picc line in and give you some TPN.  TPN is a 24 hour feed directly into the veins.  Steve and me call TPN Dracula food.  It’s a Friday morning when they requested the picc line so I was told I may have to wait till the Monday.  However, a young man comes to my bed at 12.45 and says hello there I’m here to take you for your picc line.

On the journey down to the cardiovascular lab to get my picc line inserted  we met Mr Paterson-brown, he gently touched my shoulder and said “I’m pleased your getting the line in today Elizabeth, I will be up in the ward to see you in a while”. These good bedside manner from the doctors really help.

Oh wow entering the cardiovascular lab was something else.  The staff were welcoming and chatty.  There was quite a collection.  A nurse, a radiographer, a radiologist and a technician.  They were checking my date of birth and the radiographer said oh you are exactly two months younger than me.  Oh dear, I’ve got the Devils child working on me.  I looked at this beautiful lady, “you are only joking ” I say, she laughs reaches over to me and gently strokes my arm “I was born before the Omen came out” she whispers “I’m a genuine 666”  we laugh together.  One good thing it did do was make me feel relaxed.   The nurse comes in,  “come on you two bletherers lets get Elizabeth all set up”

The room has so many expensive technical machines.  Absolutely fascinating.  I get wheeled over to the bed.  It’s rather high, I need a couple of steps to help me get up onto the bed.  Once I’m on the long skinny bed the nurse straps me on securely.  She puts the blood pressure cuff on my upper left arm and the sats monitor on my middle finger. ” I like to keep an eye on you at all times “she says.   Up on a massive screen comes my name and all my readings.  Yes, I have a pulse 😀.  Thank goodness for that.   Now for my right arm.  It gets held down straight.  The technician has a helmet on that looks like he is going to do some welding.  He covers the majority of my arm with the green sheet, leaving an area of skin exposed.  The radiologist then starts to do his work. After he introduced himself.  His first words were just a scratch – why do they say that ? It’s never a scratch,  he put the local anaesthetic in.  He would use an ultrasound to guide the line up my arm, fiddle around via my armpit and guide it round to my heart.  Fairly complex stuff.  I needed more anaesthetic and it was more fiddly than he would have liked.  But with his expertise he did a grand job and got it in.   The X-ray machine came down approximately three inches above my chest.  I tilted my head to the left, I could see my body on the screen, full chest X-ray with the picc line runnining from my mid left arm up to the arm pit and carrying along till it reaches the heart.  WOW that’s ME.  The nurse came round to my side, put a clear film dressing over the line.  This dressing needs to be changed every week Elizabeth.  She continued to take off the blood pressure cuff and sats monitor.  And finally unstrapped me from the bed. She put the steps back to the bed for me to climb down. “Now take it easy” she gently said.  My head was spinning, I took my time and gathered my thoughts.  Gently does it girl.  Down the steps and then over and onto my bed.  The porter was waiting to take me back to the ward.  When I got back I glanced at the clock, as I often did, it was 3.20pm.  Gosh doesn’t time fly when you are having fun.

My Bear Hans keeping an eye on my picc line.

A few hours after getting my picc line in.  Along came my lifesaving Dracula food.  This is TPN – food fed through your veins 24 hours per day. Very clever really.  The food is light sensitive and needs to be covered by a bag.

Here is Hans looking after my TPN


Once I was started on the TPN feed I had to get transferred to ward 107.  My two ladies said they were going to miss me.  Likewise I would miss them. The care I had in 106 was great – consultants coming round to see me at least twice a day, nurses looking after me very well.