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 😘😘

 


 

 

 

Advertisements
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?