Nets/carcinoid Syndrome · Uncategorized

The Tattoo

Folks have been inking their bodies for much longer than anyone can imagine.  The oldest discovery of tattooed human skin to date is found on the body of Ötzi the Iceman, dating to between 3370 and 3100 BC.  Today many people get a tattoo in celebration of the birth of their child, remembrance of a loved one, and of course expression of art.  Me myself, I have never been attracted to the idea of tattoos in the slightest on myself, however, I have no objection to anyone else having artwork on their skin.  In fact I rather admire the work the tattoo artist work does.  The first male love of my life, my Dad has one tattoo; he got it when he was in the army, it has a thistle on it and the name of my mother on it.  I used to kiss it and look at it lovingly and rub his arm and think to myself if someone loves me like my daddy loves my mummy I will be one lucky lady.  My And yes people for the record this has happened.   My hubby does have three small blue tattoos on his tummy, they are markers the radiotherapy he underwent for his testicular cancer.  In 1996 this is the way they set up the simulation and marked the skin and the patient is left with permanent reminder.  Mum and Dad were married for 60 years before Mum died, Steve and I have been married since 1986, following in their footsteps; happy with that.

Both of my brothers, Albert and Brian have tattoos, and my sister Helen has a tattoo.  After my our Mother passed away.  Albert had an image of Mum on his arm.  Helen got a tattoo in remembrance of Mum too.  We all cope in different ways with death and honouring loved ones.

I have a few friends who particularly liked to express themselves one way or another.  Whether it is eclectic dress, many colour hair changing, piercings, and the main discussion of this post getting a tattoo or five.

One of my friends particularly likes to get tattoos.  Louise is a very close friend who has became one of the family.  Lou and Keith, got one of Buddy and Bella’s pups from the first litter, he is the image of Buddy, they call him Gunner.  When the second litter came along goes without saying another puppy had to join their household.  Harris, now one year old may look like his Daddy, but majority of his characteristics are of his Mummy, Bella.  Lou, has been wonderful over the last three years, visits plentiful.  Giving lifts to hospitals.  Helping with fundraisers for Scotland’s Net Cancer Charity – The Ann Edgar Charitable Trust.  What fun we had at The Tea Party and The Music For Nets Night.

Lou is a busy lady, but if she says she is going to help – I can guarantee you she will be there.  The one thing I found harder than anything else was asking for help.  When I had to give up driving the reliance on getting a lift is essential.  The spontaneous hypoglycaemia and exhaustion means I like to plan outings in advance.  Not living on a bus route isn’t ideal.  But Ive got to admit, car travel is usually the best form of transport. So asking for help….. with Lou, you don’t need to ask.   For Many things, hubby Steve and I go together.  Both our sons, Tony and Stuart assist as and when needed.  My sister hazel helps out when she can too, which really lightens the load.

Lou messaged  me one morning Ive got something I want to show you.  Its a present.  But its only for you to see.  I really hope you like it.  I asked if she liked it.  She answered, oh i’m pleased with it.  Left me a tad bamboozled and yet looking forward, as always to her visit.

Later that morning In comes the smiling face, Buddy and Bella run up the long hall and cover our guest in a mountain of blonde hair while dutifully competing for a slobbery snog.  The kettle goes on as always.  I wait in anticipation for the ‘surprise’.   As I bring through the teas and coffee Lou takes off her sweater for the unveiling.    As I catch a glimpse of what I can see on her arm I almost drop the cup.  On her arm she has had a tattoo.  And what is it?  A Zebra.  I see her lips move, I can hear the words come out in an almost muffled way,  I got this for you.  For the first time in my life I can almost say I have a tattoo.  My heart skips a beat and brings a tear to my eye.  I had no inkling, what a lovely thing to do for me.  And to raise awareness for net cancer.  Thanks Lou.

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Why did she chose the Zebra?

In medicine, the term “zebra” is used in reference to a rare disease or condition, like Neuroendocrine (NET) Cancers. “If you hear hoofbeats, think horses, not zebras.” … This because in the medical community the term zebra is universally used to reference a rare disease or condition.

You can find out much more about neuroendocrine tumours, net cancers.  And particular support in Scotland by visiting Scotland’s Net charity.  This charity was set up by my consultant and a patient,  at Edinburgh’s Western General Hospital.  Her name was Ann Edgar.  The charity can be found at http://www.taect.scot

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Nets/carcinoid Syndrome · Tube Feeding

Dying To Look Good

You look great –  that’s the words we all long to hear.  We all want to look our best.  Whether we are nipping to the supermarket, having a lazy day,  or going out for dinner.  The last thing I want is folk to be surprised that I look normal”

So why is it that there are times when people say certain phrases to me that can set my tummy into turmoil and make me feel guilty for having an illness.  These words are usually said in such an innocent manner and no malice is ever meant.   Sometimes I can get upset by what has been said to me, regardless of how harmless the conversation is.  The person paying the compliment is usually always blameless.

The conversations and body language that are directed to me are intended to be kind and gentle.  A gentle hand stroking my arm and the words that first come out how are you keeping?    One of the ladies in our support network group particularly doesn’t like this phrase.  I have spoken to many people whilst I have been in hospital and yes they are affected by what’s said too.  Certain words affect folks more than others, the word keeping was one that some found hard to deal with.   I’m not quite sure why, as I say it’s always said with such niavity.  Perhaps it’s because the word keeping is associated with custody and criminal.  Many people with with chronic illnesses have life changing situations after their diagnosis and can often feel like a prisoner in their own home and need the help of others.  Maybe this is a possibility why keeping is not liked by this person.  I can’t go out on my own, and I’m very grateful for the help I get, not feeling sorry for myself – promise 😘.

Most of the time words said don’t bother me too much at all.  I can put them in a box and breathe.  What really drives me crazy is the tone that the  conversation is spoken to me in.  The very pitch can affect my mood, and hence a knock on affect on my health.  Most days I will banter and have fun, if something is said in a teasing manner I will take it like water off a ducks back.  However if I’m having a difficult day the slightest thing will reduce me to tears.

So why do we want to look good?  – why not?  I personally want to look like my old self.  I want to be my husband’s wife 💕.   My wonderful staff at Ninewells hospital in Dundee have specially manufactured coloured cream for my skin to put on every day.  The transformation is fantastic.  It covers every blemish, wrinkle, gives me a lovely colour.  And it looks so natural. Once it’s on properly you wouldn’t know I had cream on.   For me it takes a lot of work to look “normal” – I smear my entire body in several creams three times a day.  Steve’s cousin Anna commented on how much work it was and how good the transformation the Dundee cream made – this actually made me feel good that she was so open.

The good thing about the chronic illness.  It’s on the inside.  We can cover it up.  Put on the war paint and put on a smile 😀😀  it’s good to smile, it’s infectious. Smile and the world smiles with you.  When you are all dressed and tried your hardest to look good, whether you are dressed to the nines or in a tracksuit, and have make up on or not.  If I am happy I always look better.  I know I am loved and this certainly makes me happy.    It can be hard to look good for anyone at anytime but I will say my family and friends do make my life much better.

I love to buy and get treated to nice clothes and accessories.  My favourites are Ragamuffin, Fatface, Michael kors, Pandora.  My hubby, Steve is so good to me.  Steve wants to treat me and make me feel good, he is the one that sees me feeling so rubbish at home. And puts up with my grumpy pants sulking moods 😂😂 – for my sake just as well he loves me.

 

Nets/carcinoid Syndrome

First Net Natter of 2016

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.

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Nets/carcinoid Syndrome

The Blind Leading The Blind……

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

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

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

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

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

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

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

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

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