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Is The NET Natter support groups right for me?

Socialising

The Ann Edgar Charitable Trust (aect) charity offers a support network to people with nets, carcinoid syndrome and their families and friends in Scotland.  The charity works independently as well as working in association with UK charity – Net Patient Foundation.

As part of the support services.  Folk affected by nets & carcinoid syndrome get together – informally and socially.  We chat, share experiences and very often laugh loudly.  Gives a chance to air our views, meet new people and strike up friendships.

Yesterday was my hubby’s 49th birthday.  There was a meeting arranged for the same day.  I asked Steve if he wanted to go to meeting or give it a miss since it was his birthday.  Not everyone’s idea of a perfect birthday night – spending time with people talking about injections, bowel habits, surgery etc.  Steve being Steve wanted us to go.   So we went out for dinner one our own and then headed to meet the others.

When we arrived at the pub the others were sitting at a large table in the bustling pub blethering away.  As usual a warm hello from everyone.  The pub setting is and ideal location.  Far away from hospitals; this non clinical setting Allows you to drop your guard and open up.  You find yourself sharing and telling of what has gone on since we last met up.  While friends and family can be a lifeline offering support and help sometimes I find myself halting and not actually saying how I really feel or how things have been.   The group has a very relaxed atmosphere and when you share an experience you do know others know how it really is.  Nothing helps better to lift the weight when someone says to you, yes I understand or I know how you feel.

Last night was the first meeting since Anne passed away.  I was feeling apprehensive.  It was anne that would tuck a label in whenever it was showing, grab my cheek softly with her index finger and thumb and ask how I am. Anne was such a loving friendly  lady who had time for everyone.  Her smile, kind words and sense of humour is what I will miss most.

Five minutes in and the knot in my tummy had subsided.  Sitting on the table was a large cake box.  Barbara, one of the members had baked a cake for Steve’s birthday.  Everyone was chatting away, talking about all sorts.  While we do share health experiences, we do actually talk about our everyday lives, our families, etc.  as well as football, golf, TV, holidays, and much more.  We had a newbie and her husband last night.  I’m sure she got a lot out of it and will be back.

An hour and a half in and we all shared Steve’s cake.  Barbara is a wonderful baker and the cake was delicious.  Conversations were flowing and everyone appeared to be relaxed and at ease in chatting.  The great benefit of the group is there is no cliquieness.  I’m sure even though it was a first social meeting for two of the people there they felt welcome with no awkwardness and able to talk freely.  As a group there are never hard and fast rules.    There is no fixed agenda or timings. You can stay for as long as you want or have the time.  No one would take offence if you came for half an hour and left or if you stayed for the duration of the evening.

We arrived at the pub at 7.40pm and left at 10.30pm.  On the way home in the car, Steve and I chatted about our personal feelings of the evening.  The half hour journey home flew in :  probably due to the pair of us nattering.  Usually I am tucked up in bed by this time.  I guess going out and meeting the others had me wrapped up in conversation and even gave me positive energy.

To think I was sceptical of going to meetings.  Worried they would be unwelcoming and regimental with rules and a set schedule.  I shouldn’t have been doubtful in the least.   I’m looking forward to our next hook up.

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Third day in my pjs and my faithful labradors

 

Buddy and Bella              Buddy helps with fortisips

 

Thursday afternoon, was feeling very very tired.  To that point that you feel your legs just can’t carry you.  Teatime – dire need to put my pyjamas on.   The whole afternoon I slept on the sofa, with the exception of the times my Labrador, Buddy, would wake me.  He would look at me and if he could speak he would say mother just try something to eat or drink a fortisip.

Buddy is a wonderful golden Labrador.  He follows me around everywhere I go.  Sits patiently in the bathroom, always at my feet or by my side when I’m sitting down.  Accompanies me to kitchen, stands and looks at the fridge – I know he is wondering if perhaps he can have something to eat.  When I’m in

bed, his duvet bed is in our bedroom.  I’m up at night – Buddy is up at night.  He carries clothes through to the washing machine.  Most importantly he knows when my blood sugars are dropping too low.  I can be in a sound sleep, I will suddenly feel a paw on my shoulder; tap tap.  I open my eyes to see his big square head looking over me.    On checking my blood sugar levels after buddy has woken me – they are always around the 2.5 mark.  He has an instinct that i need to drink one of my fortisip Drinks.

As well as Buddy we have Bella, she is also a golden lab, 2 years younger than Buddy.  She doesn’t quite keep as close as Buddy.  However, if I am home alone.  Or on a sofa on my own, I will have a Labrador on either side of me.  Bella is protective of me, keeps her ears open for anything out of the ordinary happening.  Bella is just as faithful, and is learning the household duties and definetly likes to carry things for you.  The softness of the labs mouth, they will carry something for you for a considerable time or distance and will not damage or mark it.  however she is a Daddy’s girl and knows what side her bread is buttered on – she very much looks forward to Steve’s cuddles, playing football, letting them run free outside with him.

Friday, I was violently sick.  While shouting hughie down the loo I had both Labradors in the family bathroom with me.  I was sweating and Bella was gently licking my feet, I know to many that sounds yuk, but for me it was comforting and when your heart is pounding in your ears it’s good to know someone or something is looking out for you.   Buddy takes charge and sits upright by my side as I grip the pan.  If he could hold my hand he would.  At last I’m sure nothing more can come out.  After composing myself to get back to the sofa, we three walk along the long hallway together.  Bella taking the lead and Buddy walking by my side.  Bella only one step ahead, normally she would run along the hallway.  This day she walks slowly at my pace.  Her ears pinned back listening to my every move.  I get to the sofa, fall asleep and wake up an hour or so later:  both dogs faithfully down at my feet.

Saturday felt like a nothing day.  Disappeared so quickly.

Sunday – today.  The first day I feel up to making a cuppa.  Brian and Margaret popped in for a visit.  I’m not very good with visitors when I’m feeling rubbish, but there are some people that you don’t mind calling on you at any time.  My brother Brian and sister in law Margaret are in that class.  They don’t mind if they don’t get a cuppa, or the dogs hairs need vacuumed.  And I don’t mind what I’m like when they come.  They want to visit regardless – which is lovely.  They brought me a beautiful present.  A zebra picture.  I love it.  Buddy loved the cuddles from Margaret too 🙂

I thought I would bath and get some slacks and a t shirt on.  Alas, it’s 4.45pm – I’m washed and in fresh pyjamas.  My labs don’t mind as long as they get a hug. It’s a slow evening snuggled up on the sofa.  And I think after the busy week my hubby has had he is benefiting from chilling on the couch.

 

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Too much ‘happy clappy’ chemicals

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One of the tests to confirm carcinoid syndrome is a 24 hour urine collection.  The test is called 5hiaa.  the level of serotonin excreted into the urine is measured.  From day one my levels have always been elevated.  As my doctor would say results are on the high side.  Serotonin is a feel good chemical.  A doctor was once described it to me as your happy clappy chemicals are very high.  I believe this is why I do not get down in the mouth and my glass is half full and not half empty.  I try my best to keep upbeat and positive.  With a wonderful husband and beautiful family such as mine it makes wanting to be happy relatively easy.

The test is simple enough and can be done at home.  As long as you remember to pee in a urine pot and then pour it in the designated container.  The container has acid in it the last thing you want to do is put your ****** over the containers and have the acid vapours direct themselves at you – most of us have enough problems without adding to them.  My main issue is trying to pee and not poo at the same time.    As well as reducing the flushing the lanreotide injection has cut down the diahrea from 9 times a day to  loose bowels 3 or 4 times per day.  I’ve perfected a stance that allows me just to collect the urine.  I certainly wouldn’t win any prizes for looking cool but it gets the job done 🙂

I start my next 24 hour collection for 5hiaa in 7 hours time.  I’ve been practising my pee positioning all week.

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Some happy news

This week was a tiring mixed emotional one.  My hospital admission.  Death of a friend.  Body and brain in overdrive.

Sunday brought happiness and celebration.   Our youngest son, Stuart, arrived at the house on Sunday lunchtime with Christine and Grace.  After the usual blethering and noise for the first five minutes.  Stuart announces he asked Christine to marry him and she said yes.  As parents Steve and I are so pleased that things are going on the right track for the youngsters.   We always worry about our children and I think more so the older they get.  There is something frightening for a parent when a child reaches that independent age and starts heading off in their own direction.  Our philosophy is not to interfere or tell them what to do.  We would rather support our boys and let them know they are loved and we are there for them 24 hours a day.  I can still hear my mother say I worry more about you now you are an adult than when you were in nappies; my boys are 25 & 27 and I can definitely relate to this comment.

 

Stuart, Christine & Grace     Stuart, Christine & Grace

 

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Too close for comfort

Home from my stay in hospital.  Sitting with my feet up, Steve’s making us coffee and I’m sneaking a look online.  Checked through my emails and see a reminder of our next social meeting at the pub in Edinburgh.  When my consultant gave me the card for the charity I wasn’t too sure.  But after meeting folk in the same boat and getting to know each other, I get a lot out of our Nets Scotland – Anne Edgar charitable trust  social gatherings.    We chat together, share experiences, laugh and generally support one another.  I check the date of our next meet up, it’s Steve’s birthday. We will go for a wee while and I will get Steve a cake.  Thinking of meeting up – I was looking forward to seeing everyone.

Later that night I get news that knocks me for six.  One of the members of Anne Edgar Charitable Trust – Net charity has passed away.  Damn it – she was one of my favourites too.  A genuine person.  Caring with a sunny nature.   She was diagnosed with carcinoid syndrome just over 5 years ago.

I am upset at the news of her death.  I will miss the emails we send each other from time to time.  We will all notice her absence at the next social gathering.   Most of all I will miss her smile and comforting words.

I feel fortunate that our paths crossed and am grateful for her coming into my life.  She was truly an amazing lady.  My heartfelt condolences go out to her family.

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A wee visit to Ninewells

Well it was that time again.  Bed and breakfast for a few days in hospital under the good care of dermatology at Ninewells hospital, Dundee. This is my fourth visit to the team at photobiology.   One of the knock on effects of the carcinoid syndrome is photo sensitivity, problems with my skin, niacin deficiency, vitamin d deficiency.    

For some folk going into hospital can be daunting enough, put the distance of 100 miles from home and some unknown testing to be done in the mix and it would make one feel a tad nervous.    However, I can assure anyone that may ever need to go to photobiology at Ninewells.  There is no need to fret.  The staff are brilliant.  This visit Steve and I were just going into WH Smith on the hospital concourse for a browse when a familiar figure walks up to me and asks how I am,  it’s  Dr Sally Ibbitson – she is one of the head consultants in the photobiology unit.  The beautiful kind lady spoke genuinely and took time out of her time to talk.  On going up to the ward – the staff made me very welcome, cup of tea as soon as I arrived together with some digestive biscuits.   The nurses I met previously with asked how i was, the family, dogs, etc.  all this is important to us beings that get admitted into wards.  It’s so lovely to be treated as YOU and for some of your stay not be referred to as ‘the patient with marked & torn skin’ or ‘the patient that’s photosensitive’   Don’t get me wrong there is total professionalism at all times.  

The staff here are used to my hypos.  Understand – or at least try their best to understand my malabsorption, low blood sugar levels, etc.  They feed me up.  Give me extra meals, it’s not one bowl of cereal – it’s two and some toast and tea 🙂 

On my visit this type the porters were on strike.  How was I to get from the ward to the photobiology unit?    Easy:  a willing nurse from the ward wheeled me down.  On arriving at photobiology I was met by familiar face – Gordon.  He sat with me till the doctors arrived.  After my consultation it was decided what would be done this time.  Through to the testing/treatment area.  They have had some funding and there are new curtains, TVs and its freshly painted.  Some patients will want to take their minds of what’s happening and watch some TV.  The choice of what to watch is each individual patient.  Jeremy Kyle, children’s TV, news channel – whatever floats your boat.  I prefer tv off and talk to the staff.  But then everyone that knows me will know I can talk a gramma phone to scrap.   I change into the gown and then sit in the special chair.  My opinion hasn’t changed and no matter how good the staff are, how pleasant the surroundings are – to me the chair resembles an electric chair.  No matter how hot it is in the hospital the chair feels so cold to touch.  Sit in it and get fried.  I get many different things done.   one particular provocation test does fry me.  Most folk get a setting at over 20 joules and have it glaring on their skin for 15 minutes.  For me I get a tiny patch on my wrist worked on.  Andrea wraps my arm with special blanket.  Cuts a dressing and applies it to my arm, exposing a very small square of skin. The large Perspex sheeting is put on top.  The timer is then set – I only get 5  joules for 3 minutes.   At the end of the provocation test my skin is hot and red.  At the 5 hour check over, my wrist is swollen, the skin is very hot and broken.  There has been a reaction on my back this time – the skin is tingling and feels uncomfortable.  It’s fairly hot and the broken skin is becoming irritable – I feel I could scratch.  It was hoped that the increase in nicotinamide medications I have been prescribed helps with the problems I have.  

The conclusion on the last day is – stay on all the same medications.  Wash in oilatum gel.  Then cover my skin in diprobase.  Then apply sun sense ultra factor 50 over my complete body.  Then mix the two coloured dundee creams together.  My colours are beige and coral pink.  When they are mixed together they produce a colour very similar to my natural skin tone.  I then apply the dundee cream to my skin.   I’ve to get some blood tests to check the usual routine stuff and check my vit d level.  Dr Ibittson says it would be a good idea for me to get regular light treatment – 3 times per week – start in the winter.  

It’s never ideal being in hospital, however places like Ninewells and staff like they have makes a stay much easier……..I’ve met some nice people whilst I’ve been in hospital too. 🙂

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Worth breaking the rules

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For the last five years my health has dictated holidays – breaks away abroad had been a thing of the past.  Postcards and tales from family and friends seemed to be the closest we were getting to foreign lands.  Anytime we thought about going away we hit stumbling blocks.  Our general rule is usually stay in UK, go somewhere proven.

  • do I feel up to going away
  • fitting timings in with lanreotide injection every 21 days
  • is it all really worth it
  • takings unusual meds on the trip
  • holiday insurance????
  • the weight of my fortisip drinks
  • carrying tubs of creams, factor 50 sun cream, etc

Im not the easiest person to be with at the best of time.  The spontaneous hypoglycaemia attacks when you least expect it.  Those who know me know I blether a load of rubbish at the best ofdden drop in blood sugar can turn me into a raving lunatic.  This tends to make my hubby slightly nervous, after the episode of us in the centre of Edinburgh and I just sat down in a crowded street – I could go no further and needed some supplies.  I’m sure Steve says in his sleep – “eat something” or “here is ….. Get it down you”. By the way this happens very often. I get grumpier than normal when my tummy aches.  one of the biggest challenges is the thought of leaving home and not knowing where the nearest bathroom is.  We have all had diahrea or loose movements at some time – but when this is an everyday occurrence a great deal of thought goes into leaving the security of your home and the comfort of ones own loo.

This is my 49th year on earth and have been married to Steve for 29 of them.  I want to do cheery happy things with my hubby.  Sitting one evening I thought I’ve had enough of pussy footing around.  I want us to go on a holiday abroad – go somewhere no-one knows us, take in sights and most importantly spend quality time together.   So we struck while the iron was hot and booked 7 days in Ibiza.  Was this too ambitious – a sunny island and me being photosensitive.  Get a grip woman I said to myself – put on plenty of your cream snd smother the factor 50 on.

The month before we were booked to go I was in hospital with pneumonia.  The thought of the trip we had planned together gave me strength and stamina to push myself.  Every breath, step was an effort.  Combination of IV antibiotics, steroids and sheer want to go helped me on the right road.

We got to Ibiza last week and spent 7 days there.  It wasn’t always problem free but having my soulmate with me made everything easier.

  • was it worth it? – most definitely YES
  • it wasn’t always easy
  • some of the hilly streets were a tad ambitious & challenging
  • was I tired? – exhausted – still am
  • would we go back – in a heartbeat

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