district nurse

3 years later and 3 kg lighter

Lizbeth3 Comments

Three years since I have came home from hospital with my peg feed after my sepsis.  It has been a learning curve of a journey with great deal of highs and lows.  I’m very fortunate to have a fantastic support network; the lifesaving NHS staff, including hospital consultants/nurses/dieticians, GP surgery, home visit team, CENT team and my excellent regular community visits I could not do without from my district nurses; amongst other things they deal with my dressings, peg feed and administer my lanreotide, the emotional support they offer is invaluable.

One of the members of the CENT team comes to see me on a regular basis.  I get weighed, we discuss how life has been for me.  How I have been , what meds I’m on and what feeds are going down my peg.  They are always on the end of the phone if I feel the need to talk in between visits or if I have a question/queerie/worry.  A great friendly bunch.

 

r16x9

 

Kat from the CENT team at Edinburgh’s Royal Infirmary came to see me on Monday.  We had a good chat and discussed my feeding regime and the speed of the pump.  I told her the great news that we managed a wee break to Ibiza.  My son Stuart telephoned the airline and told them about my medical condition and that I needed the pump feed and 4 bottles of 500ml per day and 5 bottles of 300mls per day – working out to quite a weight.   The airline agreed to give me free 30 kg baggage there and back.  Certainly cannot complain about that.  After our general discussions I stood on the scales.  Not happy; either of us.  I’m 3kg lighter than when I came home with the peg feed fitted 3 years ago.  I could have cried.  I could tell Kat knew I was disappointed, I couldn’t hide it.  Kat mentioned how well the tpn worked when I was in hospital.   I agreed, that was what saved me and put on the weight when I had my sepsis.  She recommends that she writes to my consultant and let him know and suggest that I get a central line – picc or hickman and get home tpn as well as my peg.   Got my cardiologist in December and see my consultant after the year; will discuss this weightloss and eating regime then.

 

  • Scales on white background. Isolated 3D image

Bye Lavita you have been a lifesaver

Lizbeth4 Comments

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

 

 

G-Tube_medium

 

 

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

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

 

 

20840933_1920503001608924_4070256579946342558_n

 

 

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

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

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

 

Lanreotide Injection with a special delivery

Lizbeth1 Comment

As usual the run up to my injection was met with even more trips to the bathroom.  Bowels  working in overdrive.  The day my nurse suggested I get incontinence pads delivered, I was a tad reserved, now I couldn’t do without them.  Before I started getting the jab every three weeks I had total uncontrollable running to the loo, more than ten times per day every day.  Now its greatly reduced.  On a really good day, its three times a day, the week before my injection is due I’m met with a rapid increase of visits to the little room.   This week as well as my usual company of my companion dog, Buddy.  We had Bella getting up with us too.  Bella is our 4 year old labrador retriever.  Who is heavily pregnant.  And lets just say the puppies were moving around in a way that she couldn’t hold the loo in for too long.  Poor girl.

The night before my injection Bella starts getting even more restless, comes to me and gives me a big hug, goes into her large birthing box bed and starts digging the bed to make it comfortable.  She is going to go into labour.  Boy its going to be a long night.  Bella starts to pant and shows all signs of first stage labour and then second stage.

At 0045am the first pup is born a little girl.  She is a perfect fox red labrador retriever.  Just like her daddy.  Bella is so good, bites through the sack, cleans the little one up and welcomes her into the world.  I give Bella a reassuring cuddle.  And make sure the little and Bella are ok.  They are.  I take a photograph of them,  I tell Steve first of course, and then send proud messages of the exciting first birth.  My friend Louise lives three miles from me and asks if she can come and observe Bella giving birth and be of any assistance to me.  She is there for the rest of the litter delivery.

 

IMG_4444

 

 

IMG_4317

 

 

By 0725am there are 8 puppies born into the world.   Steve comes in to see Bella and is there for pup number 9 and 10.  Bella feeds the puppies and a big rest.  Despite being on cloud nine and so happy I’m shattered and feel like I can hardly put one foot in front of the  other. I get myself washed and dressed my nurse will be here this morning to check over my gastrostomy tube, change my dressing, and give me my lanreotide injection.

10am my nurse Evelyn walks through the door.  At first Bella barks, only until she realises who it is.   Evelyn pops her head into the room to view the pups, and then walks along the hall.  She scrubs up and then does all the needful for me.  As my faithful labrador retriever, Buddy, sits by my side and watches everything my nurse does.  I get ready for this painful deed to get done.   Tummy first I think she says.  The soiled dressing taken off, site all cleaned, helan cream and cavilon applied.  And then my nice new clean dressing put on, carefully with tape not to touch my skin and cause a reaction.  Evelyn  then picks up my lanreotide injection.  I get this every 21 days.  Its your left side this time she says as I slip down my knickers.  I then have to work out which way to lie so evelyn can inject my left buttock, I have enough problems with this at the best of times, put lack of sleep into the mixture and we have a recipe for disaster.  I was this way and that way on the sofa. Evelyn said, just a minute and listen to me and then lie down like I tell you,  it worked a treat.  As she administered the injection of lantreotide buddy sat a few feet away watching all, making sure all was good.  Which it was.  All done.    Everything put in the sharps box.  A good discussion between me and my nurse, as always.  Notes written.

 

 

 

FullSizeRender

 

 

Steve calls my name along the hall.  I take myself along inviting my super nurse with me.  Bella is having a contraction, and as in previous seems to want me to work with her as a team.  I rub her tummy and reassure her that I am by her side.  Come on Bella, one big push for mummy, I say to her.  I can see her body contracting, the pain in her eyes.  My lovely dog looks so tired.  I can see a little tail appearing and a foot, one last push Baby belle.  And so she did.  Out comes the most beautiful little puppy.  Puppy number 11.  Bella is exhausted, I hold it while Bella bites the chord, cleans him vigorously, suddenly a little squeal comes from the puppy.  Bella wags her tail.  He is perfect and she is happy.   Puppy number 11 was born at 1118am.   What a team, you both make.  Evelyn says to me.  I feel very proud.  Bella gave birth to 8 boys and 3 girls.  I’m so pleased that things have gone well.  My dog is well, her puppies are healthy and of a good size.  Buddy, the daddy, watches on eagerly, I know he is desperate to play with the little fella’s.

My nurse managed to see the puppy being born, she got more than she bargained for on her home visits for this Thursday.   I certainly do not doubt that she has eventful days but I guess she doesn’t have puppies making an entrance into the world very often.

 

A wee bit of home assessment from my nurse

Lizbeth14 Comments

One thing and another its been a busy week.  Started with a visit to the GP on Monday, she is perturbed that despite I’m on my new super duper feeding regime through Lavita, my gastrostomy feed that Marion from the CENT team has carefully worked out for me and I am getting food pumped into me 20 hours per day, I still have an underweight BMI and haven’t gained an ounce.   I’ve got that bloody awful feeling that I need a kick up the ass, I could lie on the floor and curl up in a ball and sleep.  The Doc was also very concerned with the fact that I have difficulty with once of the most important things – getting washed.  Our shower is over the bath, between my poor co-ordination, spontaneous hy0pogleamia, the pain I get and my gastrostomy tube climbing over the bath has caused many accidents: resulting in severe bruising and a hurt pride.  Long and short of my GP visit: bloods taken, my steroid replacements have been increased for the time being, I have to visit her again soon.  We need to get the bathroom sorted.

Its lanreotide week and boy do I know it.  The bowels are flowing more than normal and for the third time the urgency at 3am disturbs my poor sleeping hubby.  Buddy sits quietly at my feet, replacing the lovely warm slippers that I had no time to put on.

 

 

 

Evelyn, one of the nurses comes in on Thursday morning.  The dogs are happy to see her.  They know the routine and watch all that is going on.  She looks at the two of them and says well you will have a wee wait on your ‘doggy mars bar’ today.  Got a lot to get through with your Mummy.  Gastrostomy  site tackled first.  Dressing taken off, all cleaned, the necessary done, new dressing on.  Skin checked and other issues addressed.  Then onto my lovely injection of lanreotide.  It may be a big pain in the butt and cost the NHS a small fortune but it a godsend to me.  My diahrea has reduced from over ten times a day to 3.  And those awful flushes have greatly reduced.  The run up to the injection the symptoms get more problematic but nothing like before I started getting it.  I really wish it had a magic formula and helped with the malabsorption.  Injection in, all sharps in appropriate box etc.

Evelyn takes a pew.  Pulls out a white folder and talks to Steve and I.  Remember last week I asked you some questions and you did well, she said.  That was a base line for us for your mental awareness.  Steve made an off the cuff funny remark and we laughed.  Yes you can only go downhill she said.   No onto some physical questions.  It was all very thorough.  Asking me questions such as can I roll over in bed.  Do I need help with washing and showering.  A great deal of emphasis on my meds, eating, all the personal issues such as my bowel habits, aids I need and use, what I can manage and what I CAN’T.  As always Evelyn was super efficient; making me feel so comfortable and at ease and still managing to get all the appropriate essential information that has to get detailed down.    The nurse is an angel she goes above the call of duty.

It was good Steve was here for all the discussion.  Evelyn already knows how much I rely on him and how difficult things are such as showering, setting up feeds, getting my medication organised – we didn’t need to go into the nitty gritty.

The outcome; I’m an at risk patient.  BMI far too low.  At risk of falls.  Has pain.  Risk of infection.  I dolly daydream into a daze, I furniture walk without realising it.  The one thing I certainly cannot do is get up of the floor on my own. Give me a piece of furniture or better still my devoted strong man – Steve.   I love this man 💕💕

Dedication of my nurse & new dressings

Lizbeth3 Comments

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 :)

Lizbeth

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:  www.taect.scot  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

Lizbeth2 Comments

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. 

Back home and boy does it feel good

Lizbeth4 Comments

I’ve been out of the hospital for 10 days.  It’s been a mixed bag of a week.  I’m feeling ever so much better – with worse episodes in between, if that makes sense.  The good periods make the unwell, sickly and painful events bearable.  I can go for that.

My amazing district nurses have been coming in and changing my dressing, cleaning and observing the leakage area.  Applying the appropriate creams; hydrocortisone first on the affected areas and then my saviour – the wonderful cavilon.  No matter how busy the nurses are they always make you feel important to them and they make time for a natter.  I have a vision of them chasing their tails by the end of the day.  Especially with gabby folk like me.

Community dietician was in for a visit this week.  With a student in tow.  This time the student was a mature male.  Keen, thoughtful and already has a good bedside manner.   My usual dietician noticed an improvement in my skin, but was concerned that I looked ‘wabbit’ I came back with I think I may have sofa and daytime TV fever.  We agreed perhaps a wee drive in the car and if I felt up to it, a small outing with Steve and the dogs might be just what I need.  Steve wasn’t too keen on me taking on something too ambitious – I agreed. The Labradors excitedly got into the car wagging their tails frantically.  Buddy panting heavily, Bella looked at him as if to say why are you making all that noise – you would think we never went anywhere.  I turned and looked at him and said don’t get too excited Bud – you never know, you could be going to the vet.  Bloody crazy we are; having conversations with dogs.    We stopped near Garvald and let the dogs out for a run.  They loved it.  Muddy puddles especially.   The cool crisp air was wonderful.  Watching the dogs run with endless energy is a beautiful memory.  The short walk for me was a tiring one, every step sapped me of energy.  However the walk did have its benefits.  My brain was re-energised.  The outing filled me with a feeling of warmth and happiness – I was with my hubby of 29 years and my loyal Labradors.

 

image

 

 

Leaving hospital after five weeks in the ward

Lizbeth6 Comments

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 Blind Leading The Blind……

Lizbeth1 Comment

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.

image

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.
https://www.hotelscombined.com/SearchBox/295438