Tag: nets

Intravenous Antibiotics is The Way Forward

by Lizbeth, posted in Nets/carcinoid Syndrome

It’s Saturday afternoon, I’m having some quiet time with my family.  My mobile telephone rings.  I instantly see it’s a call from the Western General Hospital in Edinburgh.  I answer it, it’s the little lovely young GI doctor, Alex, I saw on Thursday.  Your swab results are in.  I hear him say.  The oral antibiotics you are on at present are the most suitable for this infection.  But I think after the length of time you have been taking them we should think about you coming into hospital and going on an intravenous antibiotic. What do you think?  I quickly gather my thoughts, and immediately my mind is racing and I am weighing up in my head hospital versus home.  We chat on the telephone.  And to be honest I am not truthful about how awful I’m feeling, or how much discharge is coming out of the site.  After a discussion , we agree I will stay at home and see my GP on Monday, with a promise if I feel worse before my GP appointment I contact the hospital and go in.

A couple of hours later my professor from Thursday emailed me in response to my husband and sister doing a fundraising run for The Ann Edgar Charity.  I replied saying thanks – at the same time I took the opportunity to let him know the GI doctor had phoned me.  I also told him his I really felt; which was pretty awful.  I was breathless, sore, leaking discharge and had palpatations.  I wanted to curl up on the floor.  Prof sent me an email back and said I should come into hospital.  Steve took me into the hospital.

I arrived at the acute receiving unit.  Waited no time at all.  The nurse came and got me and Steve checked me in with the receptionist.    The nurse told me what would happen.  I would get bloods taken, give a urine sample, get a cannula put in.  And then get transferred to a ward.

I was to get routine blood tests and blood cultures.  Oh boy did they have trouble getting blood out of me.  Every time the nurse had  vein in her clutches it vanished.  It was like they were playing a game of hide and seek.  I’m sure for the medical staff it must be very frustrating.  It wasn’t as if I didn’t have any blood to give them.  On one of the attempts the nurse managed to secure the vein, then the damn thing wriggled away.  As she took out the needle blood ran down my arm soaking the sheet and the hospital gown I was wearing.    Eventually the second nurse managed to get the routine bloods taken.  The cannula proved an impossibility for two nurses, they both gave it three attempts.  They apologised as if it was their fault.  My veins are awful and even the phlebotomist has trouble getting blood from me these days so I pity the nurse that gets assigned to me if they are new to taking blood.  The nurse explained the doctor was on her way to give me a full examination, she will also put the cannula in, as well as take blood cultures.

The lovely looking young lass approaches.  To be honest though on first glimpse she looked fairly stern and unfriendly.  If you were to judge a book by a cover I would have got it wrong.  She was placid, caring and made me feel at ease.  She explained everything in detail she was going to do.  The young doctor did all the necessary, she listened to my chest, took the the time and helped me to sit up from a lying position.  My stomach felt like I had done several hundred sit ups, every move more than ached.  The pain affected my mobility.   She gave me a thorough examination and then scoured my arms for a suitable place to insert the needle.  These blood cultures weren’t going to take themselves.  Her head tilted to one side eyes scanning the surface of my arms.  She gently taps the bone at my wrist.  This will be sore, but it looks like the best place for me to take blood.  She inserts the needle  and slowly the blood comes.  Once the syringe is full, she transfers it into a glass tube and mixes it with a solution before sending it to the lab.  Now for the cannula.  That wasn’t  easy to get in at all.  It hurt, it took a couple of attempts.  I have got to admit I was pleased once it was inserted.   The doctor told me she wanted me to get intravenous antibiotics started and a dextrose drip.  She said I didn’t look well and thought I really needed to get settled for the night.   I was transferred to the ward, for the first night I was in a quiet room all to myself.   What I felt I needed was some feed and plenty of sleep.

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The plan for my hospital admission was to keep me on fluids.  Get the intravenous antibiotics going – give me a full five day intravenous course.  While I’m in monitor my blood sugar levels.  Regularly check my blood pressure, temperature, sats.  My temperature was elevated when I was admitted.  My blood pressure has a tendency to drop like a stone.   The nursing staff were outstanding , nothing was too much trouble. They were always busy and the ward was full however, I was still given the time I needed and never once felt awkward when asking for anything.  The staff all seemed to work together , they looked happy in what they did.  It made the stay much easier.  I got a ct scan whilst I was in hospital.  The radiographers were lovely – I was feeling really rubbish that day.  They pushed the wheelchair close to the bed and elevated it to the most appropriate height.  They took an arm each and helped me onto the scanner.  I shuffled my arse till my head was at the pillow.  The radiographer put a pillow under my knees.  In came the radiologist.  He introduced himself, shook my hand and asked how I was.  He looked at my gastrostomy tube.  We discussed the scan. Many people drink liquid before ct scans – he told me he was going to put liquid through my gastrostomy tube and while the scan was running he would administer contrast through my cannula.  I told him the gastrostomy tube has a catheter tip.  He carefully linked up the syringe to my gastrostomy tube and pushed through the fluid.  The staff were brilliant.    They are put under a lot of pressure in the scanning/X-ray  department. Trying to fit in emergency scans between routine appointments.

My stay in hospital was made much easier by the kindness of staff.  I met some interesting patients whilst I was in.  All made the time go quicker.

I was in hospital for 6 days.  I got my final intravenous antibiotic at 5.40pm.  At 6.30pm I got changed from my pjs into warm clothes.  By 7.00pm I had my discharge letter my medication, was all packed and Steve had arrived to drive me home.   I was so happy to be going home.  I couldn’t wait to get home to our cosy cottage.

 

 

 

 

 

Third Time Lucky?

by Lizbeth, posted in Nets/carcinoid Syndrome

its been one of those weeks.  Tuesday I was finishing a weeks course of antibiotics for the infection at my peg site.  This was the second week.  After the first week, there didn’t appear to be any difference to the discharge.  Now on day  15 the discharge was more purlent, the quantity increased, the dressings soaked through in a shorter period of time.  My nurse came to the house to administer my lanreotide, as well as change my dressing and clean the peg site.  She asked how I was feeling, I told her truthfully , I felt awful, the pain in my tummy was getting worse.  She commented on my palor.  She took a swab of the site and advised me to get in touch with my GP.

I contacted my GP the next morning by telephone, we chatted, I had an appointment to see my net specialist that afternoon, she said she knew I was feeling really poorly but it was better I went to the hospital to see the prof.  I did.  He was great, as usual.  Listened to what I had to say, asked me and Steve some questions and then decided it would be a good idea if I saw my GI consultant that day.  He made a few phone calls, walked with us and escorted me to a hospital bed.  Within less than ten minutes a GI doctor was at my bedside.  He took a further swab, and gave me the option of taking medication in hospital or at home.  I opted for being at home of course.  So it’s a third week of antibiotics four times per day.  Fingers crossed its third time lucky and they do their job this time.   We are waiting on the swab results, which will most likely be Monday.  My community dietician telephoned me today to see how I am, she will come back to the house in two weeks.

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Sometimes when you feel pained and unwell it doesn’t matter how many folk you have around you, you can still feel alone – particularly at this time it’s good to know folk care.

 

Where Did The Month Go?

by Lizbeth, posted in Nets/carcinoid Syndrome

Already its the 26th of January.  Not many days left and it will be February.  For me January has mixed emotions.  The 24th of the month is my beloved Mother’s birthday.  She passed away in the August – the first birthday she wasn’t here for was her 80th.  She was so looking forward to turning 80.  My Mum loved life to the full and all of us that surrounded her.  There is not a day that doesn’t go by that I don’t think about her.  We share many conversations about Mum and many a time we talk as if she is in the next room and is going to walk in at any time.  I guess I wish this to be true.

I have had Steve for company a few extra days this month.  I’ve had a visit from my friend Louise, visit from Jennifer & Scott.  Hazel has been down a couple of times.  Both our sons, Tony and Stuart have visited and stayed for dinner.  These visitors keep my spirits up, and turn my frown upside down, make me laugh and share stories.  The clock hands appear to move even faster than normal when visitors come to Nisbet

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Steve has taken me to visit my Dad on a few occasions this month.  A couple of times I’ve seen my brother Brian and his wife Margaret at Dads.  I’ve also met up with my brother Albert and niece Chiara and my sister Helen &  nephew Brandon, and on the last visit to see my Dad I saw Lindsay, Stephen, Sophie, Louis & Patrick.

We have managed a couple of social outings – entertained by The Domestics at The Dalriada in Edinburgh and met up with Susan and Ian from Dumfies and Galloway for a couple of hours.  We also met up with folks affected with NETS.  The Ann Edgar Charitable Trust is a Scottish Charity – it offers NET Natter Meetings once a month – which has became fairly popular.  The meeting on 10th January was busy and a few members were keen on the idea of helping out at a craft fair, raising awareness of NETS and carcinoid syndrome and funds for the charity.  One of the members, Barbara,  brought along a peg doll she made, we have since called her Ziggy Zebra.  This inspired me to make a zebra fabric memory board.

I haven’t been feeling too grand the blasted peg is still leaking, and when I say leaking it’s a tad more than a dripping tap that’s for sure.  It started to get bad nearly two weeks ago and get really painful again, my tummy is swollen like a football and the discharge a putrid offensive smell, resembling our septic tank.  My nurse took one look at it and said get the doctor to look at this young lady.  The GP saw me that day.  She took a swab of the discharge and blood tests.  It was a Friday – I felt awful.  I had a quiet weekend at home.  Monday morning at approximately 1130am the telephone rang, it was the GP, I have had the lab on the phone.  She said.  Both your swab and blood tests have shown you have an infection.  I will write you a prescription for antibiotics and get it to the chemist for you for today.  We had a discussion on the phone how I was feeling, etc.

One week later and the discharge is not any better.  Infact I will go so far to say it looks worse and the pain at times is far more than sore or uncomfortable its aching and sometimes almost unbearable 😦  My nurse is in regularly to change my dressings and see how I am.  How long the nurse is in to see me varies.  It depends how I am both physically and mentally.  All the nurses are always very thorough and look after you very well.  On some days the nurse gives you the lift you need.  This particular day she advised me to go back to the GP. Back down to the surgery for another appointment.  Doctor agrees it looks worse that the last time she saw it.  She thinks the best plan of action is another week of antibiotics in the hope it will lift the infection.  Fingers crossed it does.  If there is still smelly discharge once the antibiotics are finished – go down to the surgery and get it swabbed.  I started the second week on Tuesday, today is Friday – I have had 2 of 4 doses today.  No difference yet.  Really hope it clears up over the weekend.

It was lanreotide week second week of January so on one of my nurse visits she gave me my lanreotide injection.    This helps stop me shitting myself and cuts down the flushing on my face and neck.  My next injection is due this coming Wednesday and the nurse I like doing the injection best is off on annual leave.  I know I will be in very capable hands – but I cant help wondering who I will get.  I can see it now –  On that day –  my treatment injection will be laid out ready for the nurse to administer.  Bella will hear the car, think she knows who it is, wag her tail, run to the door, when she sees its someone else, she will run with her tail between her legs up the hall and onto my bed….

Despite this nasty recurrent infection its not all doom and gloom for the first month of 2016.  Steve and I have booked a week in Ibiza in June,  when my community dietican was here at the house for my 4 weekly home visit a few days ago we discussed how she can help with giving me a letter for the airline/travel company explaining the need for my pump, syringes, feed, etc.  I will also get it translated into Spanish. She is easy to get on with, very friendly and makes me laugh.

We also have Lindsay and Stephens wedding to look forward to.  This is a festival wedding – it is in June.  The week after we come back from Ibiza.

Steve and I will both will be celebrating our 50th birthdays:  Steve in June, Me in August.   We are having a party for Steve.  I like to go to a party  -just don’t like to have a party for me.  Its our 30th wedding anniversary in August.

Before all these wonderful things in the summer.  I’ve got to rid this infection, hopefully the hole will close up round the peg site.  I would love to get some more energy if possible.  I have a hospital admission in March in Ninewells, Dundee for 5 days for my photosensitivity.  Dundee is the only hospital in Scotland with a photobiology unit.  I am also scheduled to see Professor Martyn Caplin at The Neuroendocrine Tumour Clinic at The Royal Free Hospital, London. in April.

This week coming is busy enough: nurse coming in to do my dressings on Monday, Wednesday nurse is coming do my dressings and administer my lantreotide injection.  Steve has the eye pavilion hospital for a check up after his retina eye surgery.  Thursday – I have an appointment with my endocrinologist, Professor Mark Strachan.  Think I will have a rest on Friday.

Its been a mixed month.   At times I have been feeling really rotten and no matter where I have been I could lie down on the floor and lie in the foetal position.  There is nothing too much I can do about how I feel physically.  All I can do is take it easy, rest up when my body tell me to.  Mentally I try and keep myself upbeat and on top of things.  What’s the best remedy if you feel low mentally?? For Me  Keeping busy helps.  Going to Nets Scotland AECT Net Natter Meeting and talking to others. Having a warm bath. My biggest love of all – taking photographs.  Writing.  Baking.  I’m very fortunate, I find it easy enough to talk and say how I feel.  Its natural for everyone to feel like the weight of the world is on their shoulders at some time,  its how we deal with that weight that matters.

First Net Natter of 2016

by Lizbeth, posted in Nets/carcinoid Syndrome

Its a very wet Sunday in January.  The rain is battering against the window of our cottage as I rattle my fingers on the keyboard.  Nothing is going to dampen my mood today.  My devoted Labrador has his paw gently resting on my foot.  His gentle snore is almost in time with my feed pump whirring away as it installs nourishment into my belly.

In a couple of hours I’m going to leave the cosy sitting room and brave the weather.  Why?  To meet up with fellow patients and their friends and family.  This time one of the patient’s are kindly giving up their ‘front room’ for us all to have a blether and a cuppa.  What’s this known as – Net Natter.  We get together through the Scottish Charity The Ann Edgar Charitable Trust.

Netty-in-Kilt

Healthcare Company seeks CS Patients

by Lizbeth, posted in Nets/carcinoid Syndrome

Well we are 7 days into the year and I am feeling fairly positive.  We have had a trip to the ballet, booked a foreign holiday, we have a lovely wedding to look forward to.  Both Steve and I will be celebrating our 50th birthdays and our 30th wedding anniversary.  We will have our usual trips down to London for my hospital appointments: hopefully take in a show while we are there.  Yes a lot to keep well for.

My nurse was in today to clean my peg site and do my dressings.  We have come to the conclusion that we have almost cracked the timing of the feeding regime.  I’ve got my pump speed up to 150mls per hour and go through 2 litres of Peptamen in 24 hours, and bolus my other feed at 200mls per time.  Finally managing to get some oral consumption.  Not a lot, but something.  Getting the calories in is the main issue.  On top of the diarrhea and flushing symptoms I have with my carcinoid syndrome the drop in blood sugar levels and the malabsorption cause havoc. Hence the need for consuming so many calories.

Today has been a typical day, nurse in, hubby doing lots of chores, feed on, etc.  I’ve had some quality time to myself, got some writing done and some surfing on the net.

Whilst I was on the net I had a wee peak on Facebook, on the NetScotland page there was a posting that was of interest.  A particular healthcare company are looking for patients with carcinoid syndrome to interview.  Ideally interviews to take place by end of January 2016.  If you are interested in reading about this please click on the link below:

http://www.netpatientfoundation.org/2016/01/healthcare-company-looking-for-5-patients-to-be-interviewed/

I’m sure patient input will go a long way into assisting the education at the 13th annual ENETS annual conference.

zebraballet

 

 

Emotions 😀😁😂☺️😘😈

by Lizbeth, posted in Emotions

Im so happy to be home.  I feel free from the clinical walls of the ward.  When I walked into our home on the Friday evening I really hoped to myself this would be it, I would be home now till out patient appointments.  Certainly no more in stay hospital visits for a while.  I missed my home life. Since October my abode was a hospital address – it felt like a lot longer and I am feeling like things in my life are slipping me by.  Life is hard enough for everyone.  When you have a chronic illness you learn to live your life as a different ‘normal’ but when you have a chronic illness and something else is thrown into the mix – such as I was in hospital for all those weeks, or worse still when I also was so ill with the damn infection I didn’t know what day of the week it was.  Life gets even more difficult and complicated.
As human beings we all have difficulties to deal with in everyday life,  and it’s all difficult in its own way.  And sometimes one problem can lead to another.   Steve and I had our sons in our early twenties,  we had to be careful with money when they were toddlers, however, we did our best and they always knew they were loved.  We learnt a lot from that period in our life.   Some people have relationship problems.  Others it’s their job.   I personally believe the biggest stress on a person, relationship or a family is illness.  It can put a terrible emotional stress on anyone at a moments notice.  It can cause such upset and anxiety.  Anger.  Financial stress.  The worst feeling in the world can creep up on you: loneliness.  

 

Who gets lonely when sickness strikes?  Whether I’m at home or in hospital I have people around me – it’s still possible to feel on your own when you are surrounded by others.  At times you just feel no one understands how you are feeling or what this damn disease does to you.  I may be talking to someone and they hear my voice but are they actually listening to what I’m saying.    Whilst I was in the hospital I missed my home and my family terribly .  Although everyone in the hospital is in the same boat –  at times you can feel rather isolated and alone.   For my hubby loneliness came in the form of actually physically being on his own.  The duration of my hospital stay.  Steve was at home on his own with the two Labradors.  His routine was taking care of himself, the dogs, the business, and running back and forth to the hospital to see me.  He never felt he had enough hours in the day.  He never once complained about being tired but you only had to glance at him to see he was exhausted.   As he walked into the ward in a sluggish manner rather than his long confident strides, he had dark circles under his blood shot eyes. And as we discussed our day’s events he yawned several times through the conversation; quite unlike Steve, who is always usually full of beans and ready to take the lead.  After visiting at 8pm Steve would leave the hospital with my washing and head for home.  There would be plenty to keep him occupied.  Something on TV, house chores, the dogs, paperwork, returning the answer machine messages.  Steve would text me as soon as he got home,  quite often we would send each other several messages back and forth and chat as if we were in the same room,  one evening Steve video called me whilst I was in the hospital , it was great whilst I was in my hospital bed  I was also in my front room. Watching my dogs reaction as they heard me call their names was fantastic.  Steve and I are used to doing most things together.  So the reality of it is when Steve came home from the visiting he did all the necessary – but longed for it not to be needed.  And me to be home.  He said the old cottage was quiet and empty,  and despite him having so much to do he was bored.  Steve sent me a text one evening and in part of the contents was the words  the house is lonely, cold and quiet without you……..I miss you.   These words helped me get better quicker.  They made me feel wanted and I knew exactly how he was feeling.

The knock on effect of illness is huge –

well meaning people get in touch to ask how everything is.  Which is lovely, however, sometimes the added pressure of calls and texts can take its toll, other times they are just what you need.

Financially:  I could go on forever – extra trips to hospitals, parking, fuel, Washing, time of work – or no work at all.  Need I go on.

Upset and anxiety.  There are days you just want to cry, everything and anything you feel or say is wrong  for that moment.  That day you can’t  put your foot over the doorstep.

Anger.  😁

 


I feel I’ve been fortunate I’ve never been too angry.  Always tried to turn a negative into a positive.   And thankfully anxiety is not something that has got a hold of me.  I take every day as it comes and what comes with it.   I have learned to treasure what I have in life.  Be grateful for all the good things I do have, and believe me there are many good and happy events surrounding me.   Sure I can’t do everything I used to be able to do.  And certainly I don’t move around as quick as I once did.  I have adjusted my lifestyle accordingly.  What we used to do in a day perhaps takes us a week.  The outing, the trip to the shops and the visit to friends was once done in one day now I have to do things in stages and they will be spread over three days with a day or two in between for a rest day.    My pace of life has altered accordingly  – slowed down considerably.  Steve and I have wonderful Sunday afternoons together. And evenings by the fire chatting.  We take time for each other and converse.  And it’s wonderful, I love it.  ❤️❤️.   We perhaps now see things, do activities and sit and talk like we would never have imagined.  So while it can be lonely and stressful there are still many plus points.   For me I can honestly say that after all these years my hubby and I still really do love each other.  We have two sons, we love very much and we are grandparents .  My thoughts – life is for living and enjoying.  Sure it can be hard.  But isn’t it difficult for everybody at sometime.  I believe if something is worth having it is worth fighting for – such is life.

Leaving hospital after five weeks in the ward

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

 

 

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

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

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

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

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

Some ward time to make me better

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

My Bear Hans keeping an eye on my picc line.

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

Here is Hans looking after my TPN


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

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. 

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.

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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