Category: Nets/carcinoid Syndrome

Some Time For Us

by Lizbeth, posted in Nets/carcinoid Syndrome

Back from the NET specialist just ten days and we find ourselves travelling up the scenic A9 in our Audi TT roadster with the roof down.  Boy it’s great to be travelling for total pleasure.   We are on our way to Nairn.  Going to celebrate Cousin Sharon’s 40th birthday.  This was no formal birthday party.    We were dressed in 60’s clothing.  And the venue  was a holiday park.  Most of the family stayed at the holiday park for the weekend.  Steve and I opted to stay in a hotel just for the one night.   For us this worked out fantastic.

Our friends Louise and Keith looked after Buddy & Bella for the night we were away.  It’s always easier to go away when I know our puppies will be well looked after.  We pamper our pouches and we know they will get lots of loving from Lou and Keith.

The drive up was great.  The sun was shining.  The roof was down all the

We drove into the holiday park , as we were parking the car, there were a handful of hippies walking towards the social club.  Yes we are in the correct place.   As we walked into the bar there was a  see of faces,  nearly everyone had a 60’s outfit on.  We saw a waving hand, it was Anna  signalling to where they were.  Just as well really, because when everyone is dressed up so well we were all so different – especially when we had wigs on, etc.

This is is picture I took of Steve at home when he was trying on his outfit 😀



When we approached the family, Steve’s auntie Margaret turned round and almost leapt off her seat.  She stood on the floor and hugged her nephew tight. With the height difference between them Steve was on his knees whilst cuddling his aunt and neither of them looked out of place. There were tears in both of their eyes,  without doubt they were both genuinely pleased to see each other.  Auntie Margaret’s five children, Annette, Pauline, Patricia, Jimmy Phil and their partners all welcomed us into the heart of the family.  Everyone from the eldest to the youngest grandchild made us feel welcome and at ease.

Steve and I went back to the Hotel to get ready :

When we arrived back we had a meal.   We sat in the restaurant and had something to munch before a night on the tiles.  Then it was time to party…….


We all had a fabulous time. Steve and I had to get back to the hotel for 12 midnight.  We popped over to the caravan site in the morning to say our Cheerios.  We had a blether with auntie Margaret, cousin Phil, and his wife Jackie.  Annette came round to the caravan in the morning, as did Jimmy and Theresa.  This gave us the opportunity to see them and have a coffee and a blether before we drove down the road,

On the way home, Steve and I blethered away, enjoyed each other’s company in the confined space and had the chance to take time and discuss things.  Travelling has many advantages and opens up opportunities to let us air our views and share our thoughts, worries, anxieties, etc.  We pulled in for a spot of lunch at House of Bruar, of course, we can never go anywhere without me getting treated.  Steve bought me lovely soft blue cashmere gloves and a navy cashmere silk hat.

We arrived back home.  I was shattered.  The drive up to Nairn, the late night, the socialisation all contributory factors.  It had been challenging, as always, finding somewhere to stay, packing all my meds, creams clothes, pump, and every thing else that goes with me.   Was it worth it?  Oh most certainly.  For  two days we drove in Scotland with the roof down, slept in a lovely hotel, and most importantly we spent some quality time wIth family who made us feel welcome and had us belly laughing,  would we do it all again ?  Try stopping us.

 

A Trip To Royal Free In London in April

by Lizbeth, posted in Nets/carcinoid Syndrome

I had an appointment with the big cheese in London:  Professor Martyn Caplin.  He runs a neuroendocrine tumour clinic at The Royal Free hospital.   He is highly specialised in his field.  And people are referred from many different countries,and travel great distances to see him.  My mere 400 miles, is starters orders for some.  I have a lot of faith in our Prof Caplin.  He is very thorough, takes time to listen to what you have to say.  And most importantly remembers you are a human being and have feelings.   I know when I go down to see him I will most likely be seen later than my appointment time.  This is because he gives every patient the time they need and deserve.

For my appointment in April I need to get myself organised. Firstly we need to book a hotel for a night before and a night after the hospital.  I’m not your average human than can just jump fly down to the smoke, get seen at at the hospital and then travel back.  I tried it once.  It took over a month to recover from the exhaustion.  Premier Inn Booked.  Now time to sort the train tickets out.  It’s great that you can book everything online.  Train booked, and we can get the tickets at the station right up to the day we travel.  Cases are packed.  Lots to go in my case, feed pump, giving sets, feed, dressings, creams, medicines, clothes, etc.  Nurse has been to change my dressing,etc.  dogs are looking at the cases suspiciously.

There has been a slight hiccup with the dogs boarding.  They were scheduled to go stay together with Sally whilst we were in London.  Sally has Buddy and Bella’s son Harley.  The week before we are due to go, Bella goes into season.  Both Bella and Buddy only have one thing on their mind and it’s not walkies.  We have to put plan B into action.  Our friends, Louise & Keith look after Bella and Sally look after Buddy.    For both our dogs this is the first time they have stayed away from home.  Anytime we have ever been away one of our sons have looked after the dogs.  This was a big deal for both the dogs and Steve & I.   I have to say both dogs were looked after impeccably.  They were walked several times per day, played with.  And when we came home we could tell although they were very happy to see us they had enjoyed their time away.

Our train journey was eventful.  We met a very gutsy lady and her 7 year old son.  They travelled from York to London every Sunday.  The young lad attended Great Ormand Street Hospital for an injection.  He was under a trial drug scheme.  He has muscular dystrophy.  We chatted, shared stories, laughed.

When we got to the hospital we used the self check in.  Before I could take a seat in the busy waiting room the nurse called my name.  We walked down the corridor and into the room.   She took my weight. she said.  The Prof wants to see you, if you just take a seat along this end.  Steve and I parked our bums on the seats and waited on Prof Caplin calling me.

Fifty minutes passed my appointment time the familiar gent calls my name.  Prof Caplin kindly waits till both Steve and myself are in the consulting room.  We take a seat.   There is a lot to discuss.  Since I saw him last I’ve had my gastrostomy tube fitted, been hospitalised several times with sepsis/infections, had feeds, cream and meds changed.   After we talk, he helps me up onto his couch, he examines my belly and has a good look at the peg site.  Listens to my chest, feels my neck, under my armpits.  He says  quite a lot of granulation there.  The general all round site and your skin is healing well but you do have a long way to go yet.   I take a seat back beside Steve.  Prof mentions my last 5HIAA test was elevated. The result was 175.  A tad higher than he would like.  He says he would like me to get a scan.  Steve pipes up,  will that be a gallium scan.  The prof immediately answers us,  I can organise that for you, no problem.  You will only wait a few weeks on the scan.  I will book it now whilst you are here.   He then goes into the drawer in his desk and takes out a card and hand it to me.  This is the number for our specialist nurses.  Once you have had the scan and the result is in the nurse will phone you and discuss the results with you.  And what happens next.
We were back home in Scotland three days later.  Two days after  we arrived home the telephone rang, it was the nuclear medicine department of The Royal Free Hospital in London.  My scan was in eleven days time.  Certainly cannot complain about the quality of the service I am getting.

 

Hospital Visiting Experience

by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome

Depending on what I’m in hospital for and how poorly I’m feeling has an awful lot to do with how many visitors I can tolerate, or need, and who these people are.   When I was in The Royal Infirmary with sepsis after getting my gastrostomy tube fitted the first week I felt really ill, was in high dependency and only had Steve visit, when I started to feel slightly better my boys, brother and sister visited too.  As I progress, my nieces, nephew, cousin, godson and friends visit.  My goodness just shows you how long I was in hospital, the amount of visitors I had.  The chatter kept me going, news of what was happening in the outside world keeping me informed and entertained.  Although I do have to admit, on the days there were between three and five visitors at my bedside I found it quite difficult.  I was tired and couldn’t keep up with the conversation.  One to one I can handle, more than one voice in my lug and the noise is scrambled.  I find myself lying back and letting my visitors converse between themselves.   What some folk don’t realise is both talking and listening can be very tiring.  A twenty minute conversation can deplete me of all my energy.  Leaving no resources in reserve for later.  Even for someone as gabby as me a day of complete silence can be a necessity to get those reserves firmly back in place.  Not all days are like this, Some visits are much needed and a total boost, they are the brightest part of the day and when I share some of my most intimate statements.  It’s the actual blethering that builds up my energy, gives me that extra oomph. 😀😀

 

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My last hospital stay was only a couple of weeks ago.  I was in Ninewells, Dundee.  I was feeling a tad rubbish and tired.  I was in a friendly room with another five ladies.  My first visitor was on the Sunday night.  It was my friend Susan.  We hadn’t seen each other for quite a while.  It was so fantastic to catch up.  There was so much to talk about.  Susan was diagnosed with breast cancer just four months ago.  She got the diagnosis two days before Christmas.  Courageously she has fought this awful disease, had her breast surgically removed.  We had so much to talk about.  We chatted away, shared experiences, talked about our children and spouses.  Laughed out loud that the others in the ward knew we were happy to be together that evening.  The wonderful thing was that when either of  us said we understood how the other was feeling we really did know how each other felt.  We trust each other’s judgement and certainly don’t feel put out by offering advice.   Susan made jokes about ‘feeling a right tit’ – I bantered back and we laughed loudly.  You could see the other patients in the ward looking.  They obviously heard our entire conversation, after all I take after my mother talk fairly loud and there’s not much distance between beds.  There were two ladies in particular wondering is it ok to laugh?, should I join in at all?   They were intrigued in what we were discussing.  On the odd ocassion you could tell there was a thought that popped into their head,  surely Elizabeth shouldn’t be saying that, or That lady visiting – is she joking.  Susan has chosen not to go for reconstruction surgery.  However, she has picked up her new boob.  It sits perfectly in her bra.  And from the outside with a bra and tshirt on you wouldn’t know which one is the new addition.  She proudly stood hands a kimbo whilst I admired her new figure.  We discussed how it looked and felt.  What a fantastic option it is for a woman in her early 50’s.  She did get offered surgery with build up breast at the same time as the mastectomy.  This would have meant several more hours in the operating theatre and longer recovery time.  For Susan she made the right choice.  She is comfortable with her body.   Her hubby is supportive, loving and caring and her daughters have been just grand.  Friends have rallied round and supported, helped out and visited when required.   Susan is upbeat and doing well and has already gone back to work.  We talked about all this too at the visiting.  As we blethered, one of the other patients came over to my bed to talk to us for a couple of minutes.  Jan has leukaemia, I think it helped her to see us joking and laughing.  Taking a happier outlook on life no matter how bleak things can seem at times.  This was one of those days that the visitor most definitely recharged my batteries and gave me that zest for life that we all so much need.

 

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The Light Experience

by Lizbeth, posted in Nets/carcinoid Syndrome

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. 

Naming – What do you think?

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

I have had many suggestions for the name of my gastrostomy tube.  I’m so grateful to everyone for all the effort that has been out in.

A fellow blogger, Elaine, has gave me a name that I’m rather struck on.  The name Lavita, which means life.  Rather apt.  For me the tube gives me a better quality of life (when I don’t have sepsis, or any other infection that is).  It provides me with my essential nutrients and vitamins – my daily steak and chips or fresh fruit salad if you get my meaning.  For many people with a tube it is an essential lifeline and the only source of nourishment.

The name I have chosen is Lavita.

 

Lavita meaning life.

Suggestions and comments welcome 💕💕



We have some suggestions

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

Further to my post yesterday asking for help to name my gastrostomy tube.

I’ve had some suggestions.

Names suggested for my tube so far:

Lucy

Oscar

Mr mouth

Miss persnickety

Sir foible

Madame violet

Lady lightsaber

Little Lizzy

Richard

Percy pipe

Gastro Gordon (after chef Gordon Ramsay)

Garfield

Sybill

Gourmet Gastro

Gastro Gourmet

Cordon Bleu

Gordon Bleu

Hercules

Any further suggestions?  What do you think of the names?  Which one would you choose?  Looking forward to comments, suggestions and shares.  Have a great day guys.

💕💕

Help! My gastrostomy tube still has no name

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

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With all the hospital admissions since my gastrostomy insertion.  I have neglected to do something rather important.  Name my tube.  This is a task I would normally have done almost immediately after getting in in.

So I’m asking for HELP –  I’m looking for ideas for a name for my gastrostomy tube – you know my feeding tube that goes into my stomach.  All name ideas greatly appreciated.  I will collate the names and then make a decision.

 

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My tube is essential to me.  It’s became part of me now.  And the the routine we go through has became the new normal. For me the tube is so very useful, it feeds me my special formulated feed through the pump 10 hours through the night, for 8 hours of that I’m in my bed, I’m pump fed 3/4 hours in the morning and 3/4 hours in the afternoon.  I also bolus feed through a syringe.    My feed provides me all my essential nutrients and vitamins, as well as calories and energy.  Both pump and bolus feeding help with my malabsorption and gaining weight.  If my gastrostomy tube was a human being on the benefit side it would be a generous provider.

There can be a downside.  It appears to have a mind of its own.  It leaks at time.  I get infections, which at times gave caused me horrific pain, hospitalised me and I’ve needed IV antibiotics.  The tube needs to be kept clean.  Disposable parts need changed.  If it were a human being perhaps I would say it was high maintenance.

Please feel free to comment and suggest a name.  I’m so looking forward to NOT calling it tube.  Can’t wait to read your thoughts.

Back home and boy does it feel good

by Lizbeth, posted in Nets/carcinoid Syndrome

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.

 

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Intravenous Antibiotics is The Way Forward

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

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

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

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

 

 

 

 

 

Third Time Lucky?

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

 

Where Did The Month Go?

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

First Net Natter of 2016

by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

Netty-in-Kilt