Tag: Neuroendocrine Cancer

25 October 2015 – Blue light back to the hospital

by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding

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.

 

 

From NG to PEG

by Lizbeth, posted in Tube Feeding

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. 

Not so good news on the Cancer Drugs funding front In England

by Lizbeth, posted in Nets/carcinoid Syndrome

For the second time this year there had been financial cuts announced for treatment for NET patients in England. Firstly Everolimus, now PRRT.   You can read more on the net patient foundation site at

http://www.netpatientfoundation.org/2015/09/prrt-withdrawn-from-the-cancer-drugs-fund/

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For Reflection & Fun

by Lizbeth, posted in Uncategorized

Alongside this blog, I have another site. It will have daily postings of quotes, photographs & music. The posts are lighthearted and fun.

Please feel free to look at the site; comment, share or follow. It can all be seen at http://www.aquotesmileandphoto.com

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I hope you enjoy the site.

The photo taken above was taken in Ibiza in May 2015.  You can great hotel deals by clicking on the Hotels Combined link below.

 

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The Blind Leading The Blind……

by Lizbeth, posted in Nets/carcinoid Syndrome

The Monday after Steve’s retina repair surgery we have a busy day ahead.  Steve’s vision is highly compromised and the next weeks recovery is crucial.  Steve gets up and puts in his eye drops, he has three different drops to put in.  I would help, but unfortunately it would more than likely send him back in to the ward.  My fine motor skills are not good.  If I was to attempt to put a drop in his eye , it would probably result in a poke in the eye.  For Steve it’s a stressful enough time without a shaky hand coming at your eye offering to try and get drops in.  Me, it’s time to detach from my feed pump and flush my tube.  Then the usual creams etc.

steve gets the cereal for us and I make the coffee.  Bad move.  I have ‘blank’ moments, between these and the poor coordination I managed to burn my arm.

9.30am there is a familiar knock at the front door.  It’s my nurses.  They are here to do my dressings, check my tube, general well being, etc.  I cannot emphasis enough what a support they are.  At first I wasn’t quite sure about the need for nurses to call in.   However, they have proven their worth on many ocassions; offering help and advice as well as practical treatment.   They are friendly, easy to talk to, skilled and I have confidence in them.   One big bonus is the nurse giving me my lanreotide injection every 21 days at home.  The three to four days before my injection my diahrea gets worse.  When I travelled to the health centre to get my injection there was always the risk of needing to rush to the loo on my travels.  So  I would go prepared rather than be in a blind panic I may shit myself in the car.   The nurse does not just treat me and leave, there’s always time for a quick natter.  Blethering about TV, cars, etc.  They will Chat to Steve, or one of our sons if they are around.  Our lab buddy is especially fond of one particular nurse.  On this day, we are discussing the logistic problem of getting to the hospital this afternoon for my outpatient appointment to discuss how my NG tube is working out.

We have a rest between nurse leaving and going to hospital appointment.  I’m saving my energy and Steve needs to lie down as much as possible to help with the recovery of his eye.

We arrive at the hospital.  The walk from the car to the building is short and no steep hills.  However, Steve finds the walk challenging; the alternating heights of pavement to road is difficult.  Drain covers are awkward, as are the high kerbs and changing surface on entering the hospital.  One bonus was the hospital does have a zebra crossing in the grounds – the large white parallel rectangles give confidence.

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We are in the consultation room with my doctor and dietician.  We report there has been good news since we had our last meeting.  The NG tube and daily ten hour overnight feed has helped keep up my overnight blood glucose levels.  Since I have been on the feed I no longer need to shuffle along the hall during the night on my bottom.  My blood glucose level now tends to be higher than 1.8 and I can manage to get to the bathroom without the fear of passing out.  Pre NG tube I would get to the bathroom – usually shuffling along on my ass, the room was swooming and my through the night snack would include a supply of Glucogel.

We discuss how I have been in general and how we are managing as a family.  The doctor agrees the NG tube is necessary.  My doctor wanted to see what the benefits artificial feeding would be for me.  Now he suggests I get a peg feed fitted surgically.  This means an operation and a general anaesthetic.  I cannot get it fitted endoscopically.  He says that would not be a good idea – it would be going in blind with the possibility of hitting tumours and causing problems.  I am scheduled to meet up with the surgeons and get the surgery within two months.

I will admit I feel fairly apprehensive – having an operation, the surgeons routing around in my tummy and getting the peg fitted.   I’m not always the best after an anaesthetic.  It’s that whole coming around and feeling woozy.  I guess it’s the ‘out if control’ that I don’t like.  Although I do know getting the peg feed should be worth it.  I have faith in my clinicians to make the right call.  Whilst I am bit vain, it will be good to have a less visible to the public feed tube.  Also I’m sure there will be much less chance of me aspirating with the peg.  I’ve only had one real scary time with the NG tube – when I woke up and felt as if I was drowning.  Believe me it wasn’t a pleasant experience.  There has been a few not so good moments – being sick – trying not to wretch.  Let it happen – even though it’s awful, not only can you taste the vomit, and feel it running down your nose, you feel it in the tube too.  When the sickness has stopped, the clammy hands have dried out, time to flush the tube – firstly make sure it’s still in the tummy, check oh level and then flush the tube.  Twenty minutes later and all is well.

This means Steve and I will both have surgery within one month of each other.  Some would say quite a lot to cope with.  For us it will just be another event at the ranch.
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Taking care of each other: as always

by Lizbeth, posted in Nets/carcinoid Syndrome

Wednesday:  8am the day after we arrived home from the wedding down south Steve was on the phone to the doctor surgery to get an appointment.  His eye was still troublesome.  He described the vision out of one of his eyes like looking through a very dirty window.  He said it was murky.  Good – he had a consultation for that day.  He saw the new young gp at our practice.  He looked at Steve’s eye, asked all the appropriate questions.  Told him he couldn’t see anything in his eye, gave him a prescription for antibiotic drops and advised Steve it would be a good idea to go along to the optician and get them to have a wee look – no real urgency, but don’t leave it too long.  Steve came home phoned the optician, spoke to their receptionist, told them what had been going on, she gave him an appointment for an eye examination the following afternoon.

Thursday:  both Steve and I woke up tired.  We did our usual routine.  My feed pump/flush, skin care, meds.  Steve did his eye drops, meds.  Breakfast.  Dogs.  Nurses came in for my dressings, dealt with my NG tube.  Despite not feeling like it Steve went out to work for a few hours – lifting the heavy ride on lawn mower into the van, cutting grass, hedges, weeding.   At 3.30pm Steve went the optician.  She didn’t have very good news for Steve,  two thirds of his retina was detached.  She recommended he did not drive, keep his head as still as possible and go straight to the eye hospital in Edinburgh.  Steve being Steve, said he couldn’t leave his work van in the car park so he drove home first.  Got changed out his work clothes then we headed to the hospital.  The drive into Edinburgh was tense.  Steve looked pale.  Both of us were scared of the unknown.  We chatted on the journey, shared our fears.  We thought we would have to wait in the emergency department.  NO.  We were sent straight to the ward on the second floor.  The nurse led us to a consultant waiting for our arrival.  He fully examined Steve and then explained to us what was going to happen.  He leant over a picked up a large model eye and talked it through in detail the operation Steve needed urgently.  Steve looked at the doctor and said I only have two questions:  will it get better on its own?  When the doctor said no, quite literally this operation was to save Steve’s sight.  Steve said well question number two isn’t really a question its a request.  The operation – will I get put to sleep. I would really appreciate a general anaesthetic.  The doctor explained for this type of surgery the eye needs to be as still as possible so a general anaesthetic is advised.    Another doctor came in to speak to Steve and have a look at his eye.  Whilst he was the other doctor and I had a good chat.  He said he appreciated how ‘nervy’ it is getting treatment/operations on the eye.  Particularly of this scale.  I said to him, my Steve is no cry baby – he has been through cancer twice, had three gruelling weeks of radiotherapy and all through that he coped remarkably well.

Friday:   for me – up very early; made the decision to have half an overnight feed, get up at 5.30am, bath, skin ritual, etc. all in preparation for going to the hospital to be with Steve before his operation.  At the hospital, we spent a quality hour before the nurse whisked Steve away and it was time for me to go back home.   The nurse handed me a piece of paper with the direct line phone number to the ward – I took it from her and held it as if it was a piece of priceless China that would smash if I dropped it.  I placed it into my jacket pocket and guarded it with my life.  The nurse assured me he was in very capable hands and I could telephone anytime.  The drive home was very lonely without my soulmate.  Not to mention the car was very quiet, if you think I can talk – well steve can fair blether too. I arrived home, got into my pjs, linked up to my feed pump , put on a movie and snuggled in with our Labradors.  Steve and I text each other back and forth before his surgery.  He wanted to know I was home safe and was all linked up to my feed ok, I wanted to know how his pre med was going – we exchanged texts until I got a text from Steve at 10.20am to say that was him heading to theatre.

12 noon my feed finished.  The dogs were as unsettled as me.  Clock watching certainly does make the day go slower.   Nearly 1pm – I phone the ward – Steve is back from theatre – everything has gone to plan.  I want to go see Steve for the afternoon visiting – first thing I need to do is make sure I eat plenty.   The last thing I wanted was my blood sugar dipping.  I got two ensure drinks down me and a fortisip compact before having a bowl of cereal.   I packed some extra t shirts and shorts for Steve and put in the bag sweets and his favourite oasis juice.    When I arrived at the ward Steve was snoozing.  His operated eye had a patch on.  As I approached the bed he opened his eyes.  I know the footsteps he said.  We were both as pleased as each other to see one another.  Steve was in a lot of pain and would be for quite some time.  I didn’t stay too long the first visit in the Friday, went back in the evening  for a couple of hours.

Then I went home . Had something to eat.  Smothered my body in three layers of Cream for my skin.  Took my Meds.   Then the usual pump feed ritual; hooked up for ten hours of continuous feeding.  I didn’t want to sleep in our bed on my own, so I camped on the sofa with the dogs and TV for company and comfort.   I missed my cuddly hubby.

Saturday:  rather than getting woken by my Feed pump beeping, I awoke to the familiar noise of my iPhone getting a text.  It was from Steve, letting me know what kind if night he had and asking how I slept and asking how I was feeling.  Steve was getting home later that day – best news ever.  Big downside.  He is going to need three more further operations.  For the immediate future we are taking life gently and a day at a time.

As soon as we are able we are going onto the Hotels Combined site below and booking ourselves a relaxing couple of days away.  Somewhere not too far from home – a pamper day or two sounds fabulous.   Click on the image below if you want to see great prices for hotels UK and worldwide.

 

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Five weeks on and travelling 400 miles again……

by Lizbeth, posted in Nets/carcinoid Syndrome

July was met with a busy time including travelling to Suffolk to celebrate the wedding of steph and Levi.  Five weeks later and we are returning to the same family – Adam (steph’s brother) is getting hitched to Elodie.

As usual it’s like a military operation to get organised to travel anywhere these days.  Outfits chosen, suitable clothing packed in the case.  Check and re check I have all my medication, creams, pump, milks, first aid kit, etc.  And my companion bear – Hans.    Could not possibly travel all that distance without my bear.

The nurse comes into our home on the morning we are heading down south.  This is to check how I am and to do my dressings before heading off.  My skin on my face, particularly where the tube had been resting has become agitated and red – some improvisation is needed: I’ve a cushioned dressing between the tube and my cheek now to prevent further damage.  My nose where the plaster goes is getting red and a tad sore too.  It’s all a little cumbersome but feels much more comfortable.

The day we travelled down was warm.  Sun cream, hats, oakleys and the essential good playlist on the car hifi.  Two hours short of our destination we make an essential toilet and coffee stop.  On walking back to the car Steve gets stung by a wasp.  In the matter of seconds his arm swells like a balloon.  Fortunately we have cream with us to put on his arm.  His singing is less enthusiastic and driving slower – I can tell his arm is very sore and he has been affected by the little blighter.  We arrive at our destination.   Anna has a lovely dinner on.  We all tuck in and have a good natter.  An hour later I’m more than ready for my bed.  Pjs are on, feed pump is set up and all tucked in for the night it’s been a long tiring day.



Friday is the day before the wedding.  Long lie, quiet morning then visit John and Sam in the afternoon.  In the morning Steve rescued a bird,  I was in my element taking photographs.  Visit to John and Sam was lovely – really enjoyed it.  In the evening Adam, the groom, had guests over – some friends, his cousin Megan and her husband Jason from  Canada.  Guitars were played, songs were sung, laughter filled the room.  It was so lovely to see so many smiling faces.  When Steve gets in bed he sees some flashing lights out of one of his eyes- we check the room – I assure him I can’t see any.  Perhaps he is going to get a migraine.


So it’s Saturday and the day of the wedding.  It’s also our 29th wedding anniversary.   I can remember our wedding day so clearly.  We have had our up and downs, but I have to admit I am happy to say that I still love the bones of that cocky young lad I met in high school who became my best friend, my lover, my husband, our two sons father, my rock.  I can hear Steve talking about the day we got married – me on the back of his Honda cb350 the morning we are getting married to get a new pair of shoes.  Four years ago I managed to get the very same bike for his silver wedding present.

This is Steve touching up his precious 25 year old bike.


Ahh such beautiful memories.  Beep beep bong – that’s my 10 hour feed finished.  Time to get up out of the bed.  Disconnect myself from the pump.   Get some boiled water.  Draw it up the syringe.  Flush my tube.  Deteach the tubing and the empty bottle from the pump and stand. Dispose in recycling.  Put pump on charge for later.    Steve comes back into the bedroom armed with a welcomed cup of hot juice for me and to let me know he is heading out with the groom party for the ‘boys breakfast’.  Just take your time he says you have been up several times through the night – last night was one of those nights that the bowels were in overdrive, the feed pump had a mind of its own and went off a couple of times…… I looked at Steve all dressed in his black watch kilt – yes I still love every inch of you.  Probably more so than the day we married.   The good news is Steve didn’t get a migraine, although his eye feels murky.  He wants to eye drops – not like Steve at all.   Fortunately our bedroom has an ensuite so off I toddle to get washed, apply my oilatum, then my diprobase cream over my whole body, then the factor 50 ultra sun sense sun cream.  Phew – lie on the bed and have a wee rest.  That’s one of the things that gets me the most – is the exhaustion.  Words can’t describe the feeling of fatigue.  I don’t like to sound like a moaning Minnie.  It’s amazing how applying some cream to your skin can feel like a work out.  I have taught myself to do things in stages and where possible out of the public eye.  Ten minutes later and I’m ready to put on my Dundee cream (this is special sun reflectant coloured cream prescribed by a hospital in Dundee.  It matches my colour tone, it reflects the sunlight and stops my skin burning.  My skin reacts even in winter sun for as short as time as five minutes and can peel and blister when the light has shone through glass if I am not protected.) – the cream comes in two colours; coral pink and beige, I mix them together and apply it like foundation.  Once it’s applied it looks great.  Gives a healthy glow even on the peakiest days.  Look at the watch – I’ve got a quiet hour before I need to get dressed.  Anna and the girls are away to get their hair done.



Ta da we are all ready for the wedding – and what a lovely day it was too.  I managed to stay till 10pm.  But when Steve caught me sleeping at the table for the third time he insisted it was time for us to retire to our beautiful hotel room.  I didn’t take any persuasion.

The Sunday and Monday were spent fairly leisurely, which was lovely.  Feet up when we wanted, fun conversation, nostalgic conversation &  some TV.   Just what you need in preparation for a 400 mile journey home.   Steve still kept rubbing his eye.    He bought eye drops and put them in.  He assured me he was ok, I wasn’t convinced.    Looking forward to getting home and seeing our lads and our Labradors.  And not to mention getting Steve’s eye checked out.

My New Companion: Hans

by Lizbeth, posted in Tube Feeding

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

by Lizbeth, posted in 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

by Lizbeth, posted in Tube Feeding

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?

by Lizbeth, posted in Uncategorized

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

by Lizbeth, posted in Uncategorized

 

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.