Tag: carcinoid syndrome

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.

 A Further Eight Days In Hospital :  December 4th 2015 to December 11th 2015

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

We arrived at Edinburgh’s Western General hospital. I only sat down in the waiting reception for a couple of minutes and a nurse came with a chariot to take me to a bed and get me clarked in.  One of the consultants gave me a thorough going over.  Well the question is, how long are we keeping you?  She asks.  Steve prompts a reply well anything less that five weeks is a bonus, but it would be a preference to have her home for Christmas to share a Brussel sprout or two 😀 The consultant broke into a smile and said. No promises but be will do our best.  Within an hour and a half I had been booked in,  blood taken , urine sample given, cannula inserted, porter called and I was now getting wheeled along to the ward.

I get into the ward of four, the nurse helps me out of the wheelchair, and assists me into the bed.  She points out where the toilet and shower room is.  After explaining everything to me, she placed the buzzer close to me and said if you need anything press the orange button, and we will come to you.   I thanked her.  Steve put my things in my locker, spoke to the nurses, and then came back to see me, gave me a kiss and hug and headed off home – for Steve it had been a long day.    I looked round the room.  In the bed opposite the lady was sound asleep propped up with several pillows,  the bed next to her, the lady was awake, hello I’m Jess she calls over to me.  The bed next to me has an elderly lady who informs me she is going home in the morning.  She seems so happy about it.   All in all three elderly ladies, a quiet room, an exhausted me, hopefully I will get a sleep.

I did sleep, the staff were brilliant and the room mates friendly.  The lady went home and we got a new patient.  Jess and I talked away like a couple of school kids,  we laughed and joked and had so much in common – I’m 49 and Jess is 87 years of age.  Anne the lady opposite me was very deaf. It made conversation difficult.  My consultant came to see me and it was decided no food was to be taken orally, the only fluid was when I was taking my medication.  And it was to be minimal water when taking meds.    The lack of oral fluid takes a wee bit of getting used to.  Your mouth feels perched.  Your lips press together tight.  The nurses are very kind and supply you with endless nice cubes and foam lollies, you can clean, rub your mouth and or throat.  It really does help.  Mouth wash helps too.  The dietician came too and the plan was to continue feeding through the pej at 100 mls per hour for 20 hours out of every 24 hours.

Consultant visited next day – we chatted.  Talked about how we thought the hole may seal up. I told her about us watching supervet, the honey helping the cat.  My dedicated husband digging out honey out of the cupboard and unfortunately how unlike the cats jaw repaired fairly quickly my tummy was sticky and clothes sticking to me.  She looked at me and said Elizabeth what were you doing with the honey?   I laughed I explained Steve spread it on a half slice of toast and it leaked out as soon as it was in.  Thank goodness for that she said.  I guess she watched supervet.  He actually rubbed the honey on the cats wound.  I think she had visions of us rubbing the honey on my tummy – no such luck – ha ha ❤️

The nurse came to do my flush on my pej.  Oh boy was it difficult to flush.  It actually took 15 minutes to get 50mls of sterile water though the syringe.  The tube is so fine.  Attached to my tummy is my pej and then my feeding pump.  When I get my 4 hours of, this is when I want to shower.  I am still attached to the dextrose drip – for the fear of having a hypo on their watch.  But after being on TPN ive mastered being able to shower with such gadgets.   Once the flush is done. I prepare myself for my expedition.  The walk to the toilet is still a difficult one – I do it in a couple of trips, trot along carrying two towels and using the drip stand as an aid – made the first trip to the shower room.  Now I will head back and get my clean pjs and toilet bag.  As I turn round, the nurse is standing there with my things.  Don’t you try and do all that on your own, we are always here to help , she said.  Got to admit I was so glad she brought them.  Now are you going to be ok?  the nurse asked.  I nodded.  I put down my clean pjs on the chair, and started taking what I needed out of the toilet bag.  I did the needful, managed somehow to get my clean pjs on.  As I was about to put my socks on I could feel the beads of sweat running down my back, I eased myself up from the chair, and decided to walk back to the bed as I was.  I really needed to lie down.  As I was walking over to my bed the nurse came and took my toiletries from me, put them on my locker and then quickly walked back and took my arm,  my you are very flushed she said.  Oh it’s the heat of the shower, I just need to lie down a minute.  I said.  She walked me back to my bed, helped me back into bed.  I was so grateful.  That shower had just sapped me of all the energy I had conserved in my body.   Half an hours rest and then it was time to get my feed back up and running.

A young man walks into our room, now ladies who would like to put a request on the hospital radio tonight.  I’ve been in hospital many many times – in fact I wouldn’t like to think how many hospital admissions I’ve had, and I personally have never listened to hospital radio.  Due to Anne’s deafness she didn’t take part, however the rest of us all requested  something.  His parting words were have a go at our competitions.  Makes the evening fun.

Teatime came – the three ladies had their meal .  I stayed attached to my feed.  My body must be fed – my tummy doesn’t even rumble.  They had fruit crumble for pudding  – one of my favourites.  It must have sent messages to my brain and got my gastric juices working overtime; when it was time fir a dressing change my tummy had been excreting gastric juices that resembled PVA glue – just the kind that it makes up on its own.  My brain must have been saying to the belly ha ha doesn’t this food look good, smell lovely.  That old saying my belly thought my throat had been cut but instead of rumbling grumbling noises I get leaking discharge.  Then visiting – which I always enjoy when my hubby comes in to see me.  I get a chance to see how he is, and catch up with the outside world.  Visiting finished at 8pm.

8pm was the time the radio show started.   The three of us put our headphones on.  The music played, the dj chatted – we bletherered over it.  Competition Time.  It was a mystery voice, we listened, the lady, Avril,  in the next bed said its Chris Evans.  I shouted out the telephone number to her, she dialled it in her phone, hey presto its ringing she says. Oh my goodness I’ve won. She says, i have never  won anything in my life. That boost fair cheered us up.  We listen some more and sing along , the DJ tells us another competition is coming up shortly:  this time sport.   The question is how many people watched the Fifa World Cup world wide in 2006.  There are three options. I’ve heard this question before.  I know I have, the answer 26.29 billion jumped out at me.  I shouted out the answer.  Jess said phone.   I picked up my mobile and dialed the hospital radio number.   Engaged tone.  Try again.  Jess shouts over.  I try –  beep beep:  rather than a melodic ringtone.   The music stops on the radio, that’s it, the dj will announce a winner I’ve resigned myself to defeat.  The dj’s cheery voice makes you smile, he introduces a chap called Gary on the line.  Gary is calling from The Edinburgh Royal Infirmary.  He is asking for a request.  The DJ then mentions the completion.   Oh I’m no good with mystery voices.   He says.  It’s ok Gary, Avril won that competition, we are onto a new one.  He asks the question again.   I’m not sure  says Gary,  but at least I can just guess A, B or C.  At this stage I’ve got steam coming out of my ears.  My competitive streak wanted him to get it wrong so I could phone in.  He answers.  Oh sorry Gary, that’s the wrong answer.    Both ladies and the nurse that was in our room at the time cheer.   I phone again. It’s still engaged, I look up, both ladies in chorus –  keep trying.   So I do.  Finally it’s ringing.   He asks me the question.  And yes I get it right.   Competition winners receive borders biscuits.  My reward was different and I was pleased with what I won.  A mug and a key ring.


All that excitement had tired me out.  It was 10pm.  Time for the late night drug round.  The nurse came round and did all our meds.  The other nurse did our obs and then it was time for my next feed.  The familiar beeping of the pump to let me know the feed was finished and time to change.  The nurse came to detach the finished feed bottle, flush the tube, check the peg site and then restart a new feed for overnight feeding.   The nurse came armed with a syringe, and sterilised water.  She drew up water in the syringe.  Carefully attached it to the appropriate part of the peg and pushed to get water into the tube.  We looked at each other. The syringe was locked tight.  It wasn’t budging a cm.  she tried to push harder.  Nothing.  Her face was rosy pink.  This isn’t budging.  Does it ever get like this.?   She asked me if it often gets like this.  I answered with  its frequently difficult to push but never as hard as this and I’ve never not been able to put water through the tube.   The extension is a very fine tube and much longer than the original gastrostomy.    I think I need some help here.   She said.  We abondoned the feed.  She paged the on call doctor, since it was now 11.50pm.  The duty doctor came.  It wasn’t budging for them either.  A decision was made for the night.  A dextrose drip would go up to maintain my blood sugar levels and a GI consultant would come see me first thing in the morning to do something with the blocked tube.  And overnight the nurse would regularly check my blood sugar levels with the finger pricker to make sure the drip is doing its job.   It did.  

8.30am – the GI consultant was standing at the bottom of my bed.  Well trouble what are we going to do with you now    He said in his thick Irish accent.  I grinned at him and replied unblock this tube if you know what’s good for you!   He drew the curtains round the bed.  Then got the syringe and attached it to the tube.  He wiggled and pumped back and forth.  Nothing.  He detached the syringe.  He then pulled the tube slightly back, I could feel a strange feeling in the pit of my stomach.  Oh that’s a tad sore  I say.  Yes you’ve gone a whiter shade of pale was his reply.  Just bare with me, please,  ive got a plan he continues to say.  So I lie there and wait in hope.   He pours sterile water into a beaker then draws it up in the syringe. He attempts to push some into the tube, it’s still not moving. He uses the push pull method once again and then all of a sudden WHOOSH!!!! Me and my bed are wet. Water and gastric contents on pjs, face, hair, and bed linen.  The doctor tries to apologise.  While laughing I’m thanking him for unblocking the tube.  Im so relieved.  And much more comfortable.   The nurse joins us and starts cleaning me up.  The doctor leaves us and goes attend to something else.  Half an hour later I’m in clean fat face pjs, got the hospital bed propped with pillows my blankets, iPad, writing material.  Looks like I’m all set for lying on a sun lounger by the pool in Ibiza not getting ready to try a feed.  The blue curtain round my bed slowly moves, a voice quietly asks,  is it safe to come in Elizabeth?    It was the doctor who just unblocked my tube.  However, he was more concerned with drenching me and the bed.  I tried to put on a grumpy stern face and say I was annoyed.  I couldn’t.  Soon as I saw him.  We both laughed.   Let’s try the feed then he said.  And so we did.  It worked.  For two days,

For two days all I had was feed via the gastrostomy tube.  The only thing that went down my throat was my medication.  On day three the tube blocked again.  This time there was no flushing it.  I’ve got to admit it was getting scary.  The consultant explained he couldn’t push too hard with the syringe for the fear of the tube explicating.  That statement terrified me.  There is only one thing to do – take the jejunostomy tube out.   Once he had actually said the words – take it OUT.    I wanted it removed NOW.  So I got my way.  It was removed while I was in my hospital bed in the ward.   Got to say it was a strange sensation.  There was a slight tugging feeling.  Then my tummy felt like it had never before:  the doctor carefully pulled the tube at a slow steady pace.  This wasn’t an experience I was comfortable with.  I lay still and thought it best to co-operate in any way I could.  My whirlwind tornado tummy had died down.  As he continued to pull the tube gently, gungie watery gastric juices ran out as the tube was easing out.  Then there was a click.  At last the end of the extension tube.  That was it out.  Thank goodness.  Doctor and patient both relieved.    

Time to Take the big step back to straight forward gastrostomy feeding  (peg) .  Sort the feeding regime with the dietician.  Start of on a very slow rate with my pump.  Just 20mls per hour for 5 hours.  Remember I haven’t been fed direct into my tummy and how much am I going to leak.   Five hours later – dry dressing.  I felt like a toddler that had gone all night without peeing the bed.  The nurse came to flush my tube and check everything is ok before increasing the rate.  And so the rate was increased gradually over the next 24 hours until I reached 80 mls per hour.  At this rate there is a leak when the feed goes in, but only a slight leak.  I asked the consultant when the hole would seal up and I would stop leaking his answer was how long is a piece of string.  I just don’t heal as well as some people.  And take much longer than others.

  • We had a discussion at the hospital and decided I could go home on my feeding regime with
  • The support of my district nurses coming in through the week to do my dressing, check the tube in general, deal with my skin, give me my lanreotide injection,  and any other general medical/physical/emotional support they always do
  • Community dietician coming to the house very regularly to check on feeding regime,  change my prescription if need be. Give instruction on changing connectors for tube. Take my weight.  Give us general support.
  • Regular contact with my GP.
  • Home support from my hubby, and boy do I get this ❤️

Well the staff at the hospital had been tremendous, my room mates were great company for a bunch of sick folk.   I even managed to get some online Christmas shopping done – I bought a couple of bits and bobs or Steve, Tony and Stuart.   But I’ve got to admit I was ecstatic that I was leaving them.  The thought of Our own sofa with my Steve, Buddy and Bella was just what the doctor ordered.   I yearned for my home life back.

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 ❤️

The Move to ward 107 – stayed with them till November 25th 2015

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

So I was on Total Parental Nutrion (TPN).  Nicknamed Dracula food by Steve & me.  We have loved having you the nurse said but your in demand, ward 107 want you.  It’s only across the hall way.  You don’t need to do anything.  We are going to wheel your table, bed with you in it, and all your belongings.    Paula and Esme took charged of my bed and my TPN.  You have to be skill full in maouvering, especially when the there’s a patient like me hooked up to a feed and have a picc line in my arm, they are moving the bed and moving the pump stand .  All went well.  Paula made sure i had ice cold water; which she always did.  Both ladies were very attentive in 106 I would miss the wee snippets of conversations or when you were feeling a bit down or needing something they would notice – I guess there will be staff in 107 that will be the same.  Looking back the nursing in 106 wasn’t just physical support the emotional support was invaluable.  When I had the episode of tissue oedema – Michelle was wonderful and spent time with me.

I’m in my new room of four.  Hopefully I won’t be here too long.     The other three beds had patients in them.  The bed opposite – a lady in her 60’s: Susan,  the bed beside her – a lady in her 50’s and the bed beside me had the curtains drawn with a lot of complaining.

It was the following morning I met my camp mates.  The lady opposite – Susan – we became chums, helped each other, gave a willing ear to one another.  The bed with the lady in her 50’s – we called the bed the lucky bed.  Most people only stopped overnight in that bed.  The bed beside me was quite another story.   I nicknamed the patient “the gringe” – she was  feeling miserable, had been in hospital for over 6 months.  She said it herself in some ways she was desperate to get away from this place and in another way she felt safe and secure.  Rather sad really.

The doctors/consultants/surgeons were the same as previous.  Thank goodness Bev the dietician is still looking after me.  She pops into the ward everyday, between one and three visits a day depending what there is to discuss.    The nurses on the ward are all efficient, many of them are upbeat and help boost moral.

Day 11 of the Total Parental Nutrion (TPN) and I’m still leaking, the pain in my stomach doesn’t want to subside.   The ward round is early this day,  the usual gathering of doctors and surgeons round the bed.  They examine me, listen to how I’ve been, they explain they would have something they would like try.  Since I cannot get fed from the peg at the moment – even at at 10mls per hour it leaks.  New plan put in an extension tube.   The extension is called a jejunostomy feeding tube.  It was to get put in that day in endoscopy.  Cripes no waiting around.

So what’s the jejunostomy feeding tube?  –  The procedure was done down in endoscopy.  Basically I was going to get a 6 foot very fine rubber tube inserted – it would go through my stomach and threaded through my intestines till it reached the jejunum.   It will allow the feed to run through and go into me,  It shouldn’t leak since the feed will be going a lot lower down.

The nurse comes over to me  – “time to get you in  a gown” she says,          ” they will  be taking you down soon”.    She had to help me I’m still attached to the TPN – that’s not allowed to get disconnected, so one arm has the cable running to the Dracula food.  She carefully and skilfully helps me manouevre out of my pjs and into the gown.  At first it was all awkward, wondering which arm goes where, thinking about stuffing cables and large bag of  feed into arm holes of tops, making sure everything is the correct way round and not inside out.  Pjs off – gown on.  All ready.  I will go for a pea.  Now I am ready.

The porter comes for me.  The nurse has to come down with us,  because I have TPN running.  I’ve arrived.  The staff are waiting on me.

I sign the necessary forms, get introduced to the four staff in the room. There are two doctors doing the procedure and two nurses assisting.  First thing get a new cannula in.  As ever it took a few attempts to get the cannula in, thankfully the doctor was a gem, she was gentle.  All set for the sedation so I wouldn’t remember a damn thing 😴.    Next came the delightful mouth spray – tastes of banana – really numbs the mouth and toungue.  Then the nurse gently put on blood pressure cuff, sats monitor and oxygen.  Then my least favourite – the mouth guard.  It was carefully placed in my mouth and strapped.  Then I was turned on my side.  They were Blethering away to me,  and said we are going to put the sedation in now.  That’s the last I remember – thank goodness.  Next thing that’s clear – truthfully is the next day.   I know Steve visited me and my sister visited me – only because they told me.

We got the feed up and running. All attached and running.  Bev recommended running at a low rate to begin with.  So for the first 24 hours the TPN would still run,  I would get goodness from two means,    Once the rate was up and all running ok, I got the TPN down.  The decision was to feed through the extension for 20 hours of 24 – giving me 4 hours of freedom.  Ya beauty.  This was the first time in four weeks I was not linked up to something for 24 hours per day.  A step in the right direction.  Big smiley happy face that day.  

Bev had sorted the dietary requirements so I would be getting plenty of calories:  the downside to this was changing the feed very late at night.  One night.  The nurse was doing my flush and putting up the feed.  We heard a commotion behind the screen.  It was Susan.  She was buzzing to get up to the toilet.  The CSW came to her,   She was short and dumpy, perfect bobbed hair, although she waddled she actually looked like she floated.  She was very cheerful,  when she spoke to you no matter how you felt you couldn’t help but smile.  She had a big heart and a big laugh.  “how can I help sweetheart”? “I need the to go to the toilet and I can move – I’m strapped down to the bed”  the little dark haired lady looked at her slightly puzzled, ” you daft moo your not attached to anything – think you have been dreaming” she said.  She waddled away, chuckling to herself, you  know it’s going to be a break time conversation.     Small incidents like this kept me going.

I was in hospital for five weeks.  Eventually.  We had a feeding regime.  I still had a painful tummy.  And boy was it still leaking gastric contents.  I asked how long would it take for it all to heal up.  No one knew how long it would take.  The time had come to take the big step.  I was getting discharged.  Home to our house.  My own bed.  Snuggle in with Steve – see my buddy & Bella.  Smell the fresh air – oh yes can’t wait.  It was four days later than originally planned, my discharge papers were done, meds done, Steve came to pick  me up for 4pm.  District nurses and GP phoned – organised for next day.  Community dietician & consultant at western general phoned.  All sorted.  So excited 😀.

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”

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.

 

 

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. 

The Blind Leading The Blind……

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

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

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

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

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

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

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

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

 

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Five weeks on and travelling 400 miles again……

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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



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


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

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


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



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

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