Nets/carcinoid Syndrome · Uncategorized

Friendship: that stands the test of time

IMG_0307           Friends.  We all have them.  What does

friendship mean to you?   How do you define a good friend?  I guess we would all have different answers. What’s important to me does not necessarily sit high in the rankings for you.  We also have friends and ‘friends’.  There are those that will be by our side for the rest of our days and there are work chums, social meet up buddies etc.  There are friends we will never meet in person; social media hook ups, pen pals.  We can build up great relationships and share common ground, learn all about their country, etc.  The support that can be gained from a friend that you will never meet in person can be invaluable.   The fellow patients and carers/friends/family that I have met through the support network charity The Ann Edgar Charitable Trust has been just fantastic.  We meet , talk about all sorts, support each other and friendships have developed.  To be honest I never thought I was one for sitting in a room full of sick folk, that want to chat about their condition, but actually making the effort to go out on a chilly evening, have a blether and a cuppa and most of the time a jolly good laugh. I usually always go home in a much better frame of mind and feeling a whole lot better than when I woke up that morning.

 

For those of you that have read my blog you will know that family is the most important thing in my life.  I’m the youngest of five.  The closest to me is Hazel with a 6 year age gap.  The other 4 are closer tother in age.  Mum and I developed a great friendship, from a young age she took great interest in activities at school etc.  I remember running home from school eager to tell her all about my day.  Mum and I spoke every day, even when I got married.  Perhaps it was just a short phone call, but the blether would take place non the less.  Mum died 5 years ago there is not a day that goes by that I don’t think of her and miss that conversation.

 

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I have talked in previous blog posts about friends.  As someone who can no longer drive and with numerous problems such as fatigue, hypos, pain, etc.  Friendship is extremely important.  Now as adults, I’m no longer that kid hanging on to my sister Hazel’s skirt and we are great pals with wonderful support.  Support and help has came in different ways from different ways .  Two friends that I value, really care about and have been particularly helpful over the last year are Sally and Louise.  My  husband, Steve, is  the best friend you could ask for.  We spend a lot of time together and never seem to tire of each others company.

There is a pal that I haven’t spoken about in my blogs.  On leaving high school I decided to go to university in Edinburgh.  on my first day I met this quiet country girl from Callendar.  We hit it off instantly.  At the end of year one I decided to leave auld reekie and study in the city of discovery, Dundee.  This in no way hampered our friendship, we remained friends through studying in different cities, marriage, the birth of both of us having our sons.  Both of us are god mother to our first born.  Tony now 30 and Scott in his 20’s, my how time has flown.  Jennifer was sitting on my sofa a couple of weeks ago on a Sunday afternoon chatting away with Steve and I.  Just the three of us, it could have been 34 years ago, with the exception of some of the conversation subjects.  Amongst other things, We had the 4 lads to talk about, Tony, Stuart, Scott and Cameron.   Over the years Jen has been a great loyal friend.  Someone I can trust, share a problem or a secret with.  In the early 1990’s when I needed breast surgery, Jennifer came early in the morning to give me a lift to the hospital, physical and emotional support before the op, just what a pal needs. While my poor hubby was rushing around with two youngsters.  When Steve was getting his radiotherapy a trip to  the country club for one week was organised by Jennifer, really appreciated it.  Since this diagnosis, Jen has been a great pal; known her place.  Text enough, but not too much.  Visited when I’ve been ‘ill’ in hospital.  visited us at home but kept away when she thought we need space.   You know your pal is your pal when you don’t feel you have to put on a face, or tidy up for them visiting.  You aren’t embarrassed if you can’t afford the bill and you can tell them.  We are made of similar cloth and I’m definitely not afraid to say anything in front of Jennifer.  Still a pal after all these years.  Thanks.

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Nets/carcinoid Syndrome · Tube Feeding

Bye Lavita you have been a lifesaver

Its the start of the weekend I’m in my own home and boy am I glad to be so.  A few weeks ago I was in hospital with yet another infection.   It started of I wasn’t feeling too good, said to my nurse I felt horrid, my tummy began to swell, my temp rose, the leakage that came out of around my peg site increased, the smell began to get really offensive.  My energy became non existent.  I visited my GP, within 2 hours I was in hospital.  Before I knew it connected to IV drip and on IV antibiotics.  I was feeling absolutely awful, could hardly put one foot in front of the other.  The familiar face of SPB came to my bed.  He is the surgeon that put my gastrostomy tube in two years ago.  Lavita has been a lifesaver and fed me on demand.  After blood tests, X-rays, scans and careful discussion with the surgeon and the wonderful dieticians Bev and Marion it was decided it was time to change the tube.

 

 

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Im not going to lie, I was bloody nervous at the thought of getting lavita taken out and another tube put in.  The nurse came to tell me that I was getting my tube changed later that day.  just after lunch I could hear a familiar Irish mans voice outside my bedroom.  A few minutes later the doctor popped his head round the door, remember me Elizabeth? He said.  How could I forget.  He was the doctor that took out my jej extension.  I have faith in him.  My nervousness left me and I felt calm.  How could I forget, I replied.  He changed my gastrostomy tube.  I’m not saying it was plain sailing.   Mainly due to the infection,  I had a lot of tummy pain and there was quite a lot of discharge and blood. There was a lot of tugging and pulling.  The burning gastric acid from my stomach was trickling down my skin, it hurt like hell.  He mopped it up very quickly.  The saliva was running down my gums, yet my lips and mouth felt dry.  We agreed that a larger circumference tube would go in this time, in the hope that there will be less leakage.    We have moved up a size and a half and its fitted perfectly.    I was in hospital for 5 days, and got well looked after, support from dieticians, nursing staff, and doctors fantastic.

Its took me a while to get on my feet since getting out of hospital.    I have been very tired, in fact super exhausted to be exact.    Regular things have taken a back seat and gosh have I missed it all.  In particular not having the granddaughters at the house as often.   A couple of weeks before I went into the hospital our house was full of laughter of two beautiful granddaughter’s.  Our 17 month old princess was running up and down the hall saying Papa Papa, Broom Broom – she is desperate to go sit on her grandfather’s motorcycle.  Grace calls from the kitchen Bella Boo to one of our labs.   The girls are away on a two week holiday at the seaside.  Gosh I miss their visits.

 

 

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Since I have been home, I am getting my regular visits from my nurses.  Getting my tube maintained,  The balloon water changed. My dressings changed.  Working hard on building up the old stamina 🙂

The one important thing that needs to be done next is find a name for my new tube.  Its a balloon gastrostomy that feeds me through a pump directly into my tummy.  Im attached to the feed 20 hours out of 24 every day.  This prevents me having a hypo and helps me maintain my weight.  My wonderful hubby has bought me a lovely new Michael Kors leather backpack to put my pump in, it means I can be attached to my feed, carry it on my back and still be ‘fashionable’ as well as carry other essentials with me.

If you have any suggestion of a name for my new tube, please comment.  All suggestions, comments welcome.

 

Nets/carcinoid Syndrome · Uncategorized

Making The Most………

Wow its been a while since my fingers have tapped out a post.  To say I haven’t jotted down anything would not be true.  However, everything I have written recently has been very personal and Im not quite ready to share these thoughts.

It’s the beginning of July the last post was published in March.  Quite a lot has gone on in my life in the last 4 months.  The puppies have all grown, and gone to new homes.  They have left a footprint on my heart – they were jolly hard work but oh so lovely to have.  We kept one from the litter.  A stunning young lady.  We named her Bess.  And yes she is turning out to be just we hoped; a great combination of mum, Bella and dad, buddy.   Bess is already taking note to sit and wait when nurse Evelyn is attending to me.  She is intrigued in all the help that a grown up Labrador parent can be.  

We had the honour of attending and celebrating Sophie’s first Holy Communion in May.  What a wonderful day that was.  Alexandra and Grace were ever so happy to get into their dresses and drive through to Glasgow.   What a day to remember.  So happy, full of laughter and love.  Quite a memory.

Sophie trying to beat Stuart’s time completing the rubix cube. 

Sophie with Alexandra and Grace at her Holy Communion Celebration.

I felt far from my best in the last few months.  Seen my consultant, dietician, several hospital visits.  My wonderful nurses come to the house and cater to my needs.  I’ve lost weight which is a bit of a bummer.   My gastrostomy tube snapped which was slightly annoying- lovely staff from the hospital came out straight away with a new part.  Now that’s what I call service.   There has been a fault with the batch – there has been a run on broken tubes 😂 

On the 10th of each month I get the chance to meet up with net cancer patients.  Through the charity The Ann Edgar Charitable Trust.  We have a great time blethering away, sharing stories.  10th June my sister hazel drove me to haddington to meet up with the others for a coffee on a Saturday afternoon.  July 10th Steve and I went in style on steves BMW motorcycle to the evening meeting.  The meetings help me a great deal.  They give an opportunity to talk, share experience and most important be YOU.   Looking forward to the next one.  

Emotions · Nets/carcinoid Syndrome · Uncategorized

My Shining Lights when the going gets tough!!

For most of us life is hard enough.  We all run along in the treadmill of life in our own way. Me, I try and make the best of it even on the bleakest day.  The last three weeks have been a struggle.  My father is in hospital, he has had life saving open heart surgery, his surgery was fairly extensive; a triple bypass, a valve replacement and a pacemaker.  He has been in intensive care, moved onto high dependency and now graduated to the specialist cardiology ward.  He still has a long hard journey ahead of him.  My Papa is made of strong stuff, he will fight all the way.   I am finding it hard, seeing him lie in the hospital bed looking so frail and lost when I am so used to seeing him going around the family home like a busy bee.  To let you understand my Dad is not one for sitting down, as you would say he has a ‘glass ass’.  He likes to keep busy, making sure everyone is looked after when they visit him.  There is always coffee and a sandwich on offer.

Ive been feeling a tad worse than usual over the last few weeks too.  On the medics advice Ive increased my steroids.  Whats keeping me going and giving me strength?  Love.  From particular special individuals: my hubby Steve, my sons Tony & Stuart and my granddaughters Alexandra & Grace.   They are my shining light, all of them fill my heart with warmth and love.   They light up my life even on the darkest days.  And make me smile – Always.  I love them so much and am so grateful to have them in my life.

 

 

 

Nets/carcinoid Syndrome · Tube Feeding · Uncategorized

30 Years On……..

Well it’s nearly 2am and I’m wide awake. It’s been a great day.  Today was our 30th wedding anniversary and we are in Boat of Garten, near Aviemore to celebrate.    I can hear two very familiar sounds.  The first is the whiring of my feed pump, the other -rumbling snoring; my hubby, Steve, this gasping pup pup sound coming methodically from him.  I wake up often at this time, giving me the opportunity to reflect on what’s going on in my life.  

I’ve had two lovely nights in Aberdeen with Steve.  We were staying in a lovely hotel, went to a great party to celebrate the 60th birthday of his cousin, Annette and the 30th birthday of her son Lee.  Great seeing the family and spending time with Steve’s aunt Margaret and her children.  Steve’s sister Julie, Nicole and jack are here too.  Lovely quality family time; had a super family meal and went back to cousin Jimmy and Teresa’s for a visit.  Steve and I had some time on own too, the drive through Aberdeen for me set of many childhood memories.  My aunt lived in Aberdeen and we visited often.  As we drove passed Duthie Park my heart leapt and I can remember it as if it was yesterday playing in the hot sun with my mum, granny Baird and auntie Nellie.  I yearn so to take my grandkids there, share my happiest times with them.  The time went so fast over the weekend.  After breakfast we popped in to see auntie Margaret.  She was telling us about manuka doctor honey.  And how it helps health conditions for some people.  She brought the jar through to show us, steve took a photo of it. We have since looked it up and we can purchase it at Holland & Barrett for £28.99 and get a second jar for 1penny.  We are going to give it a try.   For a lady of eighty years of age she is marvellous.  When I was there I had my backpack feed on.  She was open and asked me about it.  I wish there were more people would ask when they really want to know.  I really don’t mind answering the questions.  You tend to find its children and people over the age of 75 that ask.  
  

Our anniversary day was wonderful.  Drive from Aberdeen to boat of Garten was delightful. We drove passed the lecht ski centre, one of my old haunts.  For me so strange to see it covered in Heather rather than snow.  A warm welcome awaited us at our beautiful hotel, we have a garden room, so somewhere to sit out with a pot of tea 😘.  A huge six foot wide bed – could do with that at home.  We literally dropped our bags and drove into Aviemore.  We were booked on the strathspey steam railway for first class afternoon tea.  What a great journey we had.  Our own we private compartment, pot of tea, coffee, and lots of lovely food.  I thought this would be a great treat for Steve, since he is always running about after me, working so hard with his business and rarely gets time just to sit and watch the world go by.  And we both love the idea of the steam train.  An hour an a half of relaxation was wonderful.  I’m sure it did the two of us the world of good.  We had parked the car about a five minute walk from the train.  As we were walking back, I said to Steve I needed to go to the toilet.  We immediately saw a tesco – bingo, that will do,  I was bursting now, thank goodness I had an insurance policy on.  Steve put his hand gently on my shoulder you are too close to the edge of the road he said as a large lorry rumbled passed feeling like it was about to take of my nose.  At last the green man, we could cross.  Yes, they had customer toilets.  Thank,goodness.  Oh the relief. 
  

We came back to the hotel at 5pm for a rest before going downstairs for a wee while at dinner time.  I sat on the decking with a pot of tea, it was was a lovely day and at 5.10pm it was 19 degrees – in Scotland, nearing the end of August that’s pretty good.  Sitting watching the world go by, soaking in the atmosphere, beautiful.  Suddenly a wave washed over me and I could feel a chill to my bones.  The wee voice was saying watch you don’t get overtired now – you have done much more than you are used to.  The tummy started rumbling, get to the loo woman and deal with it.  I said to myself,  it’s your blasted anniversary.  So I did.  A beauty of a major explosion in the bathroom – the sweat running down my back with the pain.   Along with my teatime medication I took extra anti sickness pills.  I lay on the bed for twenty minutes with Steve.  Much better.  

We had a wonderful evening downstairs.  Gosh, not a late night for us though.  We went down at 6.30pm and we were back in our room  at 8.15pm.  Before we came to our room we walked round a beautiful community garden opposite the hotel. Lovely way to finish off the evening.    Back in our lovely room, we had time to relax and planning our Tuesday.    

We have to make sure we get plenty time to do my creams,  dressings, medications and my feed.  Two 500mls on the pump overnight, one or two 500mls during the day depending  and 4 bolus feeds during the day.   Steve is very  organised and methodical when it comes to my medication.  He sorts it all out first thing in the morning, puts it in little pots and transfers if medicine containers if we are going out. 

Looking forward to today.  We are meeting my sister hazel and brother in law alan.  Going up in fenicular railway.  

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

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.