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.

 

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Nets/carcinoid Syndrome · Tube Feeding

So happy to have a week in the sun ☀️☀️☀️☀️😎

The dark scary winter behind us.  Several hospital admissions.  The bulbs poked their heads through the earth and produced some colour.  As Spring emerged  I hoped that my favourite season would be kinder to me than the winter was.  However, the hope of a better spring turned into disappointment.   The sunshine break Steve booked on January 1st was something both of us were yearning.  The thought of the warmer climate, the slow pace of life, friendly locals – it was all felt very appealing.

The waiting was over.  Finally  the big tin bird was waiting on the Tarmac to transport us to our island in the sun.  I was nervous it was the first time flying since Lavita had became part of my life.

I was all very organised, letters from consultant, General Practioner,  and Community Dietician.  All explaining why I carry extra weight, have excess fluids, syringes, needles, scissors, dressings and lots of medication.

The airport was very busy, we all stood queued up, hand luggage in tow, passports in hand.  A steady drum beat like sound echoed through my ears.  The longer I waited the faster and louder the beat got.  Although palpations are an everyday occurrence, the venue was somewhat different to what I’m used to.  I  was next up, as I struggled walking stick in one hand and hand luggage in the other.  The airport staff quickly came to assistance.  They exchanged my stick for one of theirs, just in case I filled mine with illicit drugs, and the burly gentleman lifted my bag onto the belt.  I walked the walk.    Steve and I were both cleared at the same time.  All ready to board the plane.

The flight was grand.  Holiday was fantastic.  There were a couple of hairy moments like the time when I chanced having a handful of peanuts and one decided to try and expel itself out of my wound, a hair breadth from my gastrostomy tube.  As I was breathing it popping in and out, making a grand appearance.  I lay on the double bed, splayed my legs put my feet up on the wall, I got scissors and after several attempts gripped the end and pulled it out as it made its appearance – got it.  Oh yuk, all the granulation softened and started running down my tummy. My hair was soaking wet, legs shaking beads of sweat running down my brow.  Boy did I wish i was home.  I managed to clean myself up, getting a dressing on and rest up.  A few hours later I was feeling much better.

Steve and I made sure we had a relaxing holiday.  We did what we wanted when we wanted.  Steve hired a car and we travelled around the beautiful island soaking in the atmosphere.

Tranquility 😘😘

 


 

 

 

Nets/carcinoid Syndrome · Uncategorized

Farewell to a courageous brave friend

When Pamela Ter Gast and I made friends on Facebook four years ago.  Little did I know such a strong friendship would develop.  And just how much we have in common.    Our friendship began with a shared interest of neuroendocrine tumours.  Our chatting very soon veered to a personal level.lkkkkk  Pam, Dutch born now living in USA with her beloved Boo, has two kids – like me.   Only I have two lads, Pam has one of each; a girl and a boy.    We hooked up with two other Dutch zebras: Beth and Didi.  The four of us formed a close bond; sharing stories, we laughed and cried together.   We call ourselves the musketeers.   Of course we are alternative musketeers – Pam: Winnie The Pooh, Beth: Piglet,  Didi: Eyore and little old me:Tigger.

  

Pam was a very gutsy lady who I admired greatly.  You could always rely on Pammy to make you feel better.  When times were tough for any of us we would take a virtual travel together.  We posted our travels on social media and many people actually thought we were actually away to beautiful sandy beaches, climbing mountains, visiting castles and distant shores.  Now that would have been a treat 😉.  
This beautiful lady showered her kindness and picked me up on days I felt  pdown.  She always had an uncanny knack of knowing without asking……and offering that shoulder.   Pam did not stop at friending me.  She would drop messages to the men in my life.  When my mum passed away she was fab and sent messages to the boys, when Tony had meningitis she sent him a few messages asking how he was.  And on one ocassion when I hadn’t posted on Facebook  for a few days she sent Steve a message saying she was worried she hadn’t heard from me and asking if everything was ok.  As friends we sent each other photos, pictures, etc.  some would be funny cartoons to make us laugh others would be photos of landscapes or flowers.
This is a photo Beth took in Holland and sent to Pam.  She loved it.

  


Beautiful Pam with the infectious smile.  Always looking on the bright side of life.   Sharing a conversation brightened my day.  



  
Pam wanted to raise awareness of neuroendocrine cancer.  And whilst she bravely fought her own battle, she took time out to educate the public.  Giving talks, posting on you tube, etc.  Ever so proud of you Pam. 💕. 

Pam posted a video on YouTube:

A beautiful obituary in The Telegram 

http://www.legacy.com/obituaries/telegram/obituary.aspx?n=pamela-ter-gast&pid=180298509&eid=sp_shareobit
I will miss my conversations with Pam.  Her friendship was so valuable to me. She will always hold a special place in my heart.    When Pam said to me she knew how I was feeling, yes I knew she really did know how i was feeling.  There was no bullshit from this lady.   I feel priveliged to say she was my friend.    Pammy you touched so many people: your loss is being felt world wide tonight.

We exchanged many pictures, photos, etc.  This is one that Pam posted on my Facebook page.  Rather apt, don’t you think?