Author: Lizbeth

I’m a writer and editor. I love photography, art, history, writing, reading & hungry to learn more. I am privileged to live in Scotland with the most lovable labradors Buddy and Bella. I write, sing, love, laugh and cry every day I try my best to turn a negative into a positive. Keeping my frown upside down and smiling each and every day. I so enjoy spending time with my 2 sons, grandchildren and riding our Harley Davidson. It's not how long you live, it's what you do while you are here.

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.

 

 

High dependency, the ward & going home

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

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. 

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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Entering the final year in my forties

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

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

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

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

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


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