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.






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.






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.


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.

Well I’ve Done It: I’m 50 :)

Well today its my birthday.  I am half a century – the big 50.  Many folk hide their age, dread being fifty and pretend their younger than they are.  Me, I’m happy to be here.  I feel privileged to say I have hit such a milestone.  My fortieth decade was a mixed one.  There was many happy events, lots of love and laughter which keeps me going.  However, I  also had to face a few difficult life challenging times which were so difficult.


Steve & Me

Happy to get up the castle



I had many occasions to have cause for celebration.  Both my sons attended university in this decade furthered their education.  Our delightful labradors, Buddy and Bella  came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties.  We delivered a litter of puppies from them, and have kept in touch with puppies and owners.  Now made some lovely friends.  Some wonderful children have been born in the last ten years who are really close to my heart.  There have been a few very happy weddings.  I have mad many new friends.  Need I go on.   Life is precious and for living, it is all too easy to get bogged down with our problems.  On a personal level Steve and I are as much in love as we were when we were teenagers.  I believe this is my weapon – Love.  

The one thing I am certain is in the last ten years I felt loved.  The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me.  It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure.   I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary.  Now got my gastrostomy tube fitted.  Life isn’t always easy with a stoma.  Ive been admitted with several infections.  However, its much better than it was,  I have a fantastic medical team and nurses that come to the house which is fantastic.  And I’m still here to tell the tale and thats whats important.

The second half of my forties were slightly more challenging than the first emotionally.  Amongst other things:  A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina.  But you know what we got through it all.  The boys are doing well.  Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion.  It will be three years on the 9th August that Mum passed.  I miss her every day.  We had one of those relationships that we spoke or text every day.  Mum wouldn’t want me moping around.  She was a great character, a beautiful woman that I looked up to and admired.

One day in the consulting room at the hospital my professor handed me a card.  It was for the NET Tumour Support Group that I now meet regularly with.  .  We have all became great friends.  Sadly, one of the friends that I was very fond of passed away last year.  However, I would rather have  spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all.   we all meet regularly every month and have a great time.  Its not doom and gloom, we meet at each others house or in the pub.  Partners, friends, carers go too.  You can have a look at the charity’s website to see what work they do:  I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.

I’ve had cards delivered for my 50th birthday.  Including cards from friends in the Net group which is lovely.  One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake.  I could have cried, its so beautiful.

Looking forward to spending my 50’s  with Steve.  Doing what I enjoy.  Taking photos,  writing, cuddling my labs, crafting, etc.  My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love.  I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle.    Have a great weekend guys.  After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night.  Tonight its Craig Hill, tomorrow its Nina Conti



The Light Experience

Sunday 13th March , we are driving in familiar territory.  Steve is in the driving seat on the Audi TT, the roof is down and we are crossing the firth of forth with the wind in our hair. The familiar smell of the sea breeze.  I so love the convertible, I merely tilt my head and I can see the clouds roll in that stormy Scottish sky, no need to put down the window or take a break and get out of the car for a breath of fresh air.  We have the Bose sound system on at warp factor.  Steve and I singing all the familiar songs that come on at random at the top of our voices.  got to say all our friends will vouch for Steve and say he is a far better singer than I am.  This is not only a routine drive of recent.  I went to university in Dundee and Steve picked me up 31 years ago on the motorbike and we drove the exact same route.  I’m sure I listened to the same music and tilted my head and gazed at the clouds and made pictures and stories just as I did this Sunday.

The two hour drive  saw us entering the familiar surroundings of  Ninewells Hospital, Dundee.  I’m up here this time for a three night stay.  I will be attending the photobiology department for tests and treatment.  All part of the ongoing treatment for my photosensitivity. Just arrive in the ward and a smiling face at the reception desk peeks over the pc monitor. Hello Sweetheart, How was the drive up? Beds all ready for you, we will get you round, get you settled and then get the doc in to clerk you in.  She comes round from behind the desk and sees me to my bed.  Its so nice not having to explain who you are, the nurse recognises you from the last time you were in the ward.   I meet my fellow patients in the room, I am in a room of 6 of us. in my days in  we talk, share stories, I will do a separate posting on ‘life on the ward’  Steve makes sure I’m all settled in.  Makes sure all my clothes and pjs are in my locker.  My pump is up on my table and all my feed and giving sets are organised.  Steve disappears for 10 minutes, says he has to go to the shop for a sandwich.  He comes back with a book for me to read.  He knows I have my kindle to read, but he also knows how much I love to read a book, especially a new book, I’m a new book freak, I cant help but  sniff the inside of the book, the smell of it is something I will remember from my childhood and will always love.   I gave my lovely hubby a hug, walked with him to  the private reception area and had a quick snog.  Steve left to go home to Buddy and Bella.  I went to lie on my bed.  That night I got a visit from our friend, Susan.  That visit most certainly needs a posting of its own. By the end of the visiting it was time to sleep. Early start in the morning.

Its first thing Monday morning and time to go to photobiology.  The porter wheels me to the department and parks me in the waiting area.  I’m sitting there daydreaming, perhaps been there for all of 4 or 5 minutes when I feel the chair move and I hear a familiar voice talking at my rear.  Its Dr Sally Ibittson.  Sally is immaculate, such a beautiful, perfect lady.  She makes you feel at ease and talks to you not AT YOU or DOWN TO YOU.  She always makes sure you fully understand everything and usually runs late, since she gives everyone the time she feels they deserve.  Sally starts to wheel me through the busy waiting area, quite a challenge, she kept apologising and asking if I was ok, which I was.  We got to the consultation room.  We discussed how things had been, my current meds, and where we think things should be going.  It was decided we would do the same provocation test as last time, and do a few testing areas on the back.  If all goes well we will try a short burst in the photo therapy light machine, if all ok, we will get it arranged for a machine to get sent to our home for a period of time home treatment.    First things first the provocation test and some other lighting and mapping.  Sally wheeled me through from the consultation room to the treatment area.

As I arrived at the treatment/testing department Andrea the senior technician was standing in the hallway, Cup of tea, before you start young lady? don’t want your blood sugars dropping   She didn’t even have to ask how I take my tea, what a memory.  My eating habits have changed since last being in photobiology.  I have had Lavita fitted.  I can have half a cup of tea.  but I had to bolus 300 mls of feed down Lavita  rather than have a couple of sandwiches.  a wee tad more awkward fiddling around with syringes and flushing my tube with sterile water, but the wonderful staff make it all ever so easy and nothing ever seems like too much trouble.

Chat over, cup of tea drank, bolus feed in.  Body fully refuelled.  Ready for action.  Mr friendly technician hands me my gown.  knowing full well it will take me longer than the average human to put it on.  Me and co-ordination aren’t the best of friends.  As long as I take my time, I get there,  Steve said he has never seen anyone making such a meal of trying to get from a tshirt to a gown.  Once ive got the gown on the next challenge is trying to get on the chair.  Its a tall stool like chair.  For a 5 foot 2 inch person like me it feels like climbing a mountain.  Once I’m on the chair, its fine, its just getting up to the dizzy heights.  Although when I am on the chair my legs aren’t long enough to touch the ground, so my legs are left swinging back and forth.  The doctors come in and decide exactly where they want the machines to be lined up and for how long.  The provocation is to be on my wrist and various others on my back .  When you are getting these tests done, you need to sit or lie incredibly still.  It can also get quite hot, depending on where you are getting it done and for how long. The staff are fantastic and blether away whilst the testing is going on.  They do their best to make sure I’m comfortable at all times.  The provocation test came back positive fairly quickly .  By the afternoon the skin was inflamed, hot and slightly broken,  The doctor got the technician to take photographs of the wrist.  They also noted the results of the mapping on my back. The provocation test timing has been halved.  And the strength was reduced.  This test gets warm, every part of my arm with the exception of a square patch gets covered with towels,and  a special board,  I wear a pair of special specs to protect my eyes.

I need taken back to the ward from photobiology – it’s s fair wheel to the ward and I can’t do it on my own.  One of the technicians carefully steers me along the long corridors , up the lift. Gives us the chance to talk about today’s events.  And  the opportunity to chat about life in general.   The technicians are fantastic with me and build up a trustworthy bond.  It makes it easier for each time you go.  It can be a lonely scary place, even if you are only getting light treatment.  Having a familiar face in the staff makes me feel at ease.  The technician specialist that wheeled me up to the ward stopped at the nurses station and asked to speak to the nurse in charge.  I would like you to dress Elizabeth’s peg site and if you can, please could you either contact GI or a peg specialist nurse and get them to come and have a look at the site and advise on barrier creams, steroid creams and dressings.  They of course did refer me immediately and within an hour a nurse specialist was at my bedside.
Tuesday morning, up bright and early and away to the photobiology.  Wrestled with the gown, clambered on the chair and the docs have came in to see what’s what.  The results have shown that the photo sensitivity has definitely increased.  Sally has come armed with quite a few other doctors today.  We all discuss how I have been over the last few months.  It’s recommended I get an eight week course of phototherapy.  The doctors are concerned if I  got my treatment in hospital I would be at risk of catching an infection.  So I am getting a phototherapy machine delivered to the house.  It’s a fairly large machine.  Just over 6 foot tall and opens out to roughly 5 foot wide.  I’ve got to pay for the courier delivery charge to the house from the hospital.  The nurse estimates it will be approximately £300.  I will have to get the phototherapy treatment every year.


Dr Sally Ibittson wants me to have an experimental dose of phototherapy.  So I go into the phototherapy suite.  It looks like there are several white Dr Who Tardis’s – the room has an icy chill to it.  I shiver.  The technician placed a blanket over  my shoulders it’s the cooling fans.  The dose is to be a patch on my inner left wrist.   Because it’s only my arm I don’t need to go in one of the cubicles.  The technician wheels me to a chair.  I sit at it and get comfortable.  The technician puts a stocking bandage over my arm from my elbow to my shoulder and one  from my wrist bone covering my hand and completely over my fingers. Then a towel is wrapped over my outer wrist.  The phototherapy machine then gets turned on for 4 and a half seconds .
Wednesday morning.  I have a meeting with the lovely Dr Sally Ibittson and my photo dianogstic specialist nurse, Susan Yule.  We discuss the benefits of getting the phototherapy at home. The risks, side effects, etc.   it’s hoped  that getting eight weeks of phototherapy will build up my skin and greatly help with the photo sensitivity.  They did admit the first year is usually a bit of a learning curve.    I’m due to have my machine end of June.  I will need two or three days of training at the hospital.  Also need to make sure we get a setting for the machine.   Susan takes me round and let’s me see a machine similar to one that will be delivered to me.  She tells me all about the machine and what to expect at home.  It gives me a really good insight into what lies ahead.

It’s a short stay for me this time,  my hubby picked me up at 1pm on the Wednesday.   As always the staff at ninewells always took fantastic care of me. 

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.



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.






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

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

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 ❤️