Nets/carcinoid Syndrome · Tube Feeding

25 October 2015 – Blue light back to the hospital

The paramedics have me safely in the ambulance – we will have you there in no time toots, I hear.  ” just for you, I will out the blue light on, and his nibs, may press the nee naw button on the odd occasion”

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I can hear lots of voices, familiar machine noises.  A kind voice calls my name.  I open my eyes and realise already I’m in the accident and emergency department.  We are going to put some monitors on you to trace your heart, put a cannula in to take blood.  Is this okay?  I nodded.  ECG done, blood tests taken.  They decided to leave the finger sats monitor on.   Everything seems to be getting done very quickly and there are a lot of staff around me.  Subcut morphine getting injected into me for the pain.  “We are just going to wheel you round to another room Elizabeth” as I’m getting wheeled round I see Steve catching up with us – oh boy am I glad to see him.   A feeling of terror fills my body, my heart starts thumping, everything was out of my control.  Steve’s gentle touch gave me the assurance I needed.

Parked in the bay, the nurse lifts my top, takes my obs once more, and gives me yet more morphine.  A doctor comes in, examines me.  Then the nurse starts some of the clean up process on my stomach,  I can only describe it like an overflowing septic tank.  The stench was awful, what was coming out of the infected peg site resembled a newborn baby’s first nappy.  The nurse used swabs and started to soak up the pus that was oozing out.  My stomach was making horrendous rumbling noises.  The pus was flowing and flowing and then erupted it somewhat resembled a geyser in ice. I felt the need to apologise for what was excreting out of my body.   When I did apologise the nurse would return with a comment such as ‘it’s fine Elizabeth,  and we’ve got to get all this out”  not once did she gag, make a face or give any inclination she was dealing with a foul smelling leakage – which helped a lot.

A young man dressed in a familiar uniform asked to wheel me along for a tummy X-ray.  He got me into the room and put the trolley parallel to the X-ray bed, with all the will in the world I could not get from one to the other.  The pain was excruciating.  He assured me he could bring the X-ray above me.  And so he did.

More cleaning, obs, yet more morphine; Steve tells the nurse he gave me morphine just before the ambulance left, and the nurse gave me morphine as soon as I got to hospital and then again when they started cleaning the pus.  The nurse explained to Steve I am in excruciating pain and need this quantity of morphine.  Im ready to get transferred to surgical observation unit.

Twenty minutes in the unit and the surgeon who did my surgery, Mr Paterson-brown was at my bedside.  Boy was I glad to see him.    The unit has a treatment room.  Mr Paterson-brown  acted Immediately.  He explained everything in detail to Steve an me: what he was going to do and how he was going to do it.  He used forceps to cut the flange of my peg to release it, this would let the horrid pus, infection escape out of the wound easily, he redressed it and. Told the nurses how to take care of me.    He arranged for me to get intravenous antibiotics and get transferred to the surgical ward.   The infection had got hold of me – my temp had gone up to 39.4 and I was feeling awful – septicaemia wasn’t a good feeling.   I found the world kept coming and going.  I was there but I wasn’t if you know what I mean.  Looking back it’s like a dream.  I got wheeled back to the ward of the surgical observation unit for the morning.  Then it was decided I needed a stay in hospital to get me better.  This would be a transfer to the surgical ward upstairs.  “Get you up to the ward, put you on some IV antibiotics, see the dietician, get your temp down, dressings done, etc – we will look after you” I hear Mr Simon Paterson-Browon say.  “How long will I be in hospital for?” I ask.  He looks at me and gives me one of his lovely smiles, that I’m sure makes many a nurse swoom, he pats my knee and gently says “we will get you to the ward and take every day as it comes I think, is this ok with you?” I nodded.  If anyone was going to fix this mess I had my money on it being Mr Simon Paterson-Brown.

 

 

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Nets/carcinoid Syndrome · Tube Feeding

High dependency, the ward & going home

Well the peg feed is all in an secure. I’m in high dependency linked up to all wonderful monitors to let the staff know how I am. A warm caring nurse introduces herself and let’s me know she will be looking after me, ” your husband is here” she says buts first we have to get the doctor to check you over, make you comfortable and then he can come through”
The Dr is at the foot of my bed. I tell her I’m very sore, she examines me, she administers sub cut morphine. How much morphine can a wee body take……. All done and dusted with the initial Dr visit. The nurse gets me comfortable. Two nurses together manoeuvre me up the bed – I feel like a helpless pup on its back. They gently place two pillows under my head and back and one pillow between my legs. I have never thought of pillows between my legs – bloody brilliant – releases pressure, helps with the pain. She uses the control to position the bed perfectly. Fix my covers, place my buzzer by my hand. Oh gosh best I’ve felt all day.

Time for me and my hubby. It was so good to see his smiling face. He pulls up a chair and takes my hand. I’ve waited all day for this. The nurse keeps Steve up to speed with everything that has been happening and proposed plans.

My tummy is so swollen, I’m normally like a matchstick, for now I have a football protruding at the front and my back and shoulders feel as though they have gone several rounds in a boxing match.  Knowing the bloated ness is temporary makes the pain psychologically bearable.   Steve leaves for the night.  We get me ready to sit up on a commode to go for a much needed pee.  The nurse gently helps me to a sitting position on the bed.  We sit together for 4 or 5 minutes on the bed.  The next thing I know two nurses are by my side and I am once again lying down in the bed.   My blood pressure had dropped to 70.  It climbed again once I was lying down.  We tried a bed pan, I couldn’t pee – in goes the catheter.   What a relief.   They continued to look after me in high dependency overnight.  In the morning, help with a wash, get me comfortable, the dietician comes to see me and my feed gets started.  All going well.  Only I didn’t really expect it to be this sore.  The pain is excruciating.  I tell the doctors, they say it’s the air and the poking around and it will settle.

I’m in high dependency the Tuesday night, Wednesday night and Thursday till 5pm.

Thursday 5pm I get transferred to the normal ward.  I really don’t feel any better, if anything slightly more pain.  I guess it’s everything returning to normal.  It’s Friday morning and the doctors come round – they ask how I feel – I truthfully tell them – I’m feeding fine, very sore, finding walking anywhere very difficult.  They said the pain was the surgery and would get better.  A physio checked me over on the ward before I left, she gave me a new stick to help me walk and advised me how far to walk, or rather how little and how to take a breather, etc.  she advised Steve bring in the wheel chair to take me home.  Trying to walk from the ward to the car would be far too far.

We got my medicines, letters , discharge papers and thanked the staff for everything they have done for me, Before home we made a stop at my parents house to see my dad.  😀   Both dad and I were really happy to see each other.  Steve had a well needed roll on ham salad and I had a cup of tea.

Then it was the wonderful journey home – yee ha 😀😀😀😀😀😀

I walked in, the house is immaculate – you would never thing think two golden Labradors lived here.    Buddy and Bella were so happy to see me, as I was them.  I was so looking forward to getting some normality.

Normality???   We were in bed all set up with a feed.  Just start to snooze, wham – pain, as bad as ever.  Steve gives me extra morphine.  We doze off.  Couple of hours later and I’m unsettled once again.  This goes on all nigh.

It’s Saturday 10am – There hasn’t been a time since I left the hospital on Friday  that I have felt ok.    Steve does the dutiful, helps me wash, clean pjs, etc.  11am. A familiar face comes through the door.  Brieda – one of my district nurses.  She looks at me – “well I wasn’t expecting this” she says.  You look terrible.  I told her how awful I was feeling.  She checked me over, cleaned my peg site. Changed the dressing, and said she would come back in an hour or two.  To her word she did.  There was no improvement in me, if anything,  I feel much worse.  Brieda looked at Steve “we need to get a doctor”.  Together they worked as a team phoned NHS 24 and arranged for a doctor to come see me.  I got my MST increased and my breakthrough morphine increased.  The pleasant Dutch GP said if it didn’t improve or settle to call back, and regardless to get a house all from my own GP on the Monday.  He started writing out the prescription for the morphine tablets.  Because they are an increase, there was a dosage pill I needed I don’t have at home.  Steve then thought cripes how do I go get the prescription, I don’t want to leave you on your own, I can’t take you, the boys are working till late.  Hazel – my sister, fortunately was off duty from the hospital that day.  Steve phoned her.  I will be there in half an hour she said.  Hazel sat with me, whilst Steve nipped to the chemist and got a wee bit of shopping.  Gosh I have never felt so ill in all my life.  I don’t think I will ever be able to move from this sofa.  I couldn’t get off the sofa.  Tony was working really late, came to the hose about 1.30am Steve is giving me 20mls morphine – “how are you not not your back – out cold” says Tony   “You must be in a lot of pain” – it had just entered Sunday 25th October – Tony’s. Birthday

We slept – or rather didn’t sleep on the sofas in the sitting room.  Together Steve and I saw every hour on the clock   – this was the night you get an extra hour in your bed – the clock went back an hour ar 2am.

It’s Sunday morning – poor Steve looks shattered.  He devotingly deals with me and the labs, gives the house a quick spruce, showers, and finally takes fives minutes to sit down and eat something.    An hour or so later in comes Brieda.  She deals with my peg site, – looking a bit red this morning.  Brieda cleans the site, she noticed there was an ever so slight ooz coming from the peg.  “Need to keep our eyes on this.”

We tell Brieda about sleeping in the sitting room and the huge difficulty in going to the toilet through the night.  The closest bathroom from our bedroom is a fair walk.  When I’m hooked up to the feeding pump.  Attached from my delicate tummy via a long feed tube to the feed on the stand.  Now carrying the stand and maouvering oneself around the house is hard enough – throw in pain, fatigue, nausea, disorientation.  Oh and I have ataxia.  Brieda suggested a commode for through the night – never thought I would be so grateful for a pee and poo aid.    A few hours later Brieda was back with the commode.

We decided we would go to bed early.  Steve had the bedroom looking fab, beautiful flowers on the dresser, low light in, lovely fresh silk bed linen.   Steve put the TV on and I snoozed.  I woke up in agony.  Took more pain relief, take two did it again,

Sunday 2am I woke Steve – I was wrything in agony.  I have never had pain like it.  The world was a rather dark place.  Anytime I have felt ill in the passed, Steve has held me and assured me I will be ok.  This time this wasn’t making me feel safe.  Or believe I would get better.   Steve took one look at me – I need help.  I need to get you to hospital.  Time to call 999 and get and ambulance to take you back to hospital. 

Tube Feeding

From NG to PEG

The first health professional to suggest tube feeding for me recommended PEG feeding.  However, when the appointment came round with the specialist he was very doubtful, in fact negative in approach.  He explained how for me it wasn’t the best going in blind into my tummy when we didn’t know exactly where neuroendocrine tumours were situated.  He suggested the NG tube – a much safer alternative in his opinion.

So here we are 12 weeks later.   The NG tube has been a great friend.  It’s kept me fed.  Prevented the dreaded hypos through the night.  I’ve even gained 0.8 of a kilo.  My NG tube has came to its end of it’s  three month life and due for a change.

Whilst I have been at home during the 12 weeks getting good care from my hubby and help from our sons. We have been getting fantastic support from my nurses who come to our home, check my dressings, change them, give me my lanreotide, my flu jab, etc.  the nurse Evelyn, was great, she gave Steve a flu jab at home too.  Dietician has been coming in to talk things through, weigh me.  Prescriptions delivered.  So while I’ve been getting looked after at home I haven’t been forgotten at the hospital.  My consultants have been discussing what’s best for me.

A top surgeon a the royal infirmary in Edinburgh is willing to put a peg feed in surgically.  This means a general anaesthetic.  So here I am the night before my operation in the ward.  Last Tuesday was pre surgery day.  Steve brought me to the hospital to get a check up and go over everything before surgery.  We were met by a lovely nurse from New Zealand.  She listened intently, wrote all the necessary.  Had heart and lung tests, blood tests.  Got weighed.  She took a note of all the medication I am on.  She said if I didn’t have carcinoid syndrome or spontaneous hypoglycaemia I could fast at home and come in the day of the surgery.  However, I’m complicated and an overnight stay before the surgery is needed.

I’m in the ward, Steve and I are chatting away, it’s 6pm.  A lovely lady walks up to my bed, introduces herself and shakes my hand.  She is going to be my anaesthetist during the operation.  The first thing she asks me is if I really want this surgery.  She goes on to tell me she is due to retire in seven months and I am only her second patient with carcinoid syndrome.  She has had many neuroendocrine patients, but they did not have the carcinoid syndrome.  This was only to emphasise how rare the condition is, not to say she was incapable.  Believe me, after talking to her it’s apparent she seems far from incapable, I have complete   faith in her.    The plan is to let me have my overnight feed and have a breakfast, then get put on a glucose infusion.   She wants to have another anaesthetist working with her whilst I’m in theatre.  She told us the normal blood pressure cuff will not be sufficient and I need to have an arterial cannula fitted to monitor my blood pressure.  As well as I will have a glucose infusion running throughout the operation.   She described me like a volcano.  Both my blood pressure and blood sugar levels going up and down at a moments notice.  She explained why after surgery I would go to high dependency.   Steve looked at her, he said “you know how you medics ask patients on a scale of one to ten how do you rate you pain – can I ask you, on a scale of one to ten how worried are you about Elizabeth’s surgery” – her answer was instant – she said “15”. She then smiled and told us she would take very good care of me.  She will send her colleague up in the morning, and would probably come up herself to see me.   After a bit more chit chat she left.  Her mark was left.  I liked  and trusted her.

Half an our or so later a dashing gent with a beautiful voice approached my bed.  He introduced himself – Mr Simon Paterson-Brown,  my surgeon for the procedure.  We chatted about the operation, what he was going to do, the peg.  He explained the dieticians will come see me after the operation and decide when the feed can get started.  Anything from 24 to 48 hours after insertion.    He gave me every opportunity to discuss the operation and ask questions at my own pace.

Later that evening Steve left for home and I got tucked into bed.  Me being me I was allowed to have my overnight  feed – so that went on – via my last NG tube feed and breakfast in the morning.  They weren’t willing to chance any spontaneous hypoglycaemia attacks prior to surgery.

Morning on the day of surgery – October 20th 2015. Steve pops by the hospital to see me before my op.    It’s 2.20 and their coming to take me away Ha Ha.  It’s time.  It thought I would be more nervous.  I was waiting on my knees knocking or my hands shaking – nothing.  A big burly man in blue scrubs came and wheeled me out the room.  The nurse that had been looking after me came along, she chatted away, held my hand,  in general put me at ease.  The handover from ward to theatre was about to take place.  I turned my head to the left and saw a familiar face.  One of the anesthetist nurses was someone I knew, she just had to check I was ok was her dealing with me – I was delighted Gillian was in the room.  I was wheeled into the anaesthetics room.

Wow – prep that needed to be done with the anesthetists.  Yes plural folks.  In this operation I had two – greedy bugger that I am.  The first thing that was said was hello again good to see you how are you.  Pleasantries exchanged.  The NG tube was removed,  then they decided I should get some oxygen an Valium to get an arterial line run in my right wrist to constantly monitor my blood pressure.    This is a tricky job and you need a couple of stitches to hold it in.  I also had 3 cannulas inserted.  I then heard a soothing voice say time to change the mask this is going to put you to sleep.  It must have.  Because the next thing I know I woke up somewhere completely different with a peg feed inserted into my tummy.   I was in the high dependency ward.