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 · Uncategorized

Our Support Group Has A New Website

When a patient with carcinoid syndrome, Ann Edgar and Endocrine Consultant, Professor Park Strachan,  got their heads together a very much needed charity was set up in Scotland:  The Ann Edgar Charitable Trust.

The Ann Edgar Charitable Trust (TAECT) is Scotland’s only dedicated charity to help and support those affected with neuroendocrine cancer and tumours and carcinoid syndrome.  It’s other main aims are to educate and promote awareness.

The South east of Scotland already has a wonderful support network set up.  We regularly meet on the 10th of each month.  We try to have a variety of meetings to cater for all walks of life and age.  Sometimes it’s lunch at Lauriston Farm, or a quiet drink at a bar in Edinburgh.  We have all met at a fellow patients house for afternoon tea and enjoyed lovely sandwiches and cakes.  June is a craft fair with home baking to which general public can attend, and July we are going to a garden party at Barbara and Alister’s house.  Looking forward to the home baking and beautiful gardens as well as seeing the lovely friends I have made.  It’s certainly not doom and gloom, the room is always filled with laughter.

Steve and I attend the meetings regularly and look forward to going to them.  We have genuinely made some lovely friends.  It’s good to be able to say you actually enjoy the company of the others, I have missed some due to being in hospital with this damn infection.  I can honestly say there isn’t anyone that wallows in self pity or looks for sympathy.  We are a mixed bunch with lots of stories to tell.  There is always someone willing to offer some advice without being pretentious.

Yesterday 26 May 2016 a brand new website was launched.  And I think it looks pretty cool. All comments are welcome.
You can see the website at http://www.taect.scot

Please have a surf, the site has useful information and I would love to know what you think of it.

 

Nets/carcinoid Syndrome

Some Time For Us

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.