Nets/carcinoid Syndrome · Tube Feeding

Bye Lavita you have been a lifesaver

Its the start of the weekend I’m in my own home and boy am I glad to be so.  A few weeks ago I was in hospital with yet another infection.   It started of I wasn’t feeling too good, said to my nurse I felt horrid, my tummy began to swell, my temp rose, the leakage that came out of around my peg site increased, the smell began to get really offensive.  My energy became non existent.  I visited my GP, within 2 hours I was in hospital.  Before I knew it connected to IV drip and on IV antibiotics.  I was feeling absolutely awful, could hardly put one foot in front of the other.  The familiar face of SPB came to my bed.  He is the surgeon that put my gastrostomy tube in two years ago.  Lavita has been a lifesaver and fed me on demand.  After blood tests, X-rays, scans and careful discussion with the surgeon and the wonderful dieticians Bev and Marion it was decided it was time to change the tube.

 

 

G-Tube_medium

 

 

Im not going to lie, I was bloody nervous at the thought of getting lavita taken out and another tube put in.  The nurse came to tell me that I was getting my tube changed later that day.  just after lunch I could hear a familiar Irish mans voice outside my bedroom.  A few minutes later the doctor popped his head round the door, remember me Elizabeth? He said.  How could I forget.  He was the doctor that took out my jej extension.  I have faith in him.  My nervousness left me and I felt calm.  How could I forget, I replied.  He changed my gastrostomy tube.  I’m not saying it was plain sailing.   Mainly due to the infection,  I had a lot of tummy pain and there was quite a lot of discharge and blood. There was a lot of tugging and pulling.  The burning gastric acid from my stomach was trickling down my skin, it hurt like hell.  He mopped it up very quickly.  The saliva was running down my gums, yet my lips and mouth felt dry.  We agreed that a larger circumference tube would go in this time, in the hope that there will be less leakage.    We have moved up a size and a half and its fitted perfectly.    I was in hospital for 5 days, and got well looked after, support from dieticians, nursing staff, and doctors fantastic.

Its took me a while to get on my feet since getting out of hospital.    I have been very tired, in fact super exhausted to be exact.    Regular things have taken a back seat and gosh have I missed it all.  In particular not having the granddaughters at the house as often.   A couple of weeks before I went into the hospital our house was full of laughter of two beautiful granddaughter’s.  Our 17 month old princess was running up and down the hall saying Papa Papa, Broom Broom – she is desperate to go sit on her grandfather’s motorcycle.  Grace calls from the kitchen Bella Boo to one of our labs.   The girls are away on a two week holiday at the seaside.  Gosh I miss their visits.

 

 

20840933_1920503001608924_4070256579946342558_n

 

 

Since I have been home, I am getting my regular visits from my nurses.  Getting my tube maintained,  The balloon water changed. My dressings changed.  Working hard on building up the old stamina 🙂

The one important thing that needs to be done next is find a name for my new tube.  Its a balloon gastrostomy that feeds me through a pump directly into my tummy.  Im attached to the feed 20 hours out of 24 every day.  This prevents me having a hypo and helps me maintain my weight.  My wonderful hubby has bought me a lovely new Michael Kors leather backpack to put my pump in, it means I can be attached to my feed, carry it on my back and still be ‘fashionable’ as well as carry other essentials with me.

If you have any suggestion of a name for my new tube, please comment.  All suggestions, comments welcome.

 

Advertisements
Nets/carcinoid Syndrome · Tube Feeding

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.

Nets/carcinoid Syndrome

Intravenous Antibiotics is The Way Forward

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.

image

 

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.

 

 

 

 

 

Emotions

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.

Nets/carcinoid Syndrome

Leaving hospital after five weeks in the ward

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

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

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

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

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

 

 

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

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

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

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

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

Nets/carcinoid Syndrome · Tube Feeding

Some ward time to make me better

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

My Bear Hans keeping an eye on my picc line.

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

Here is Hans looking after my TPN


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

Nets/carcinoid Syndrome · Tube Feeding

25 October 2015 – Blue light back to the hospital

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

image

 

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.