Memorable month of March

We are only half way into the month of March and already it has been filled with emotion. Despite feeling very unwell, burst balloon in my gastrostomy tube, more district nurse visits than normal at home; I have spent time with all 4 of my siblings, we have pulled together and gave the love back that was showered upon us as we grew up. February was difficult and March became emotional, in this year 2021 I certainly will not forget this month, with so many memories – most definitely a memorable month of March.

Just a few weeks ago my Daddy Bear admitted he wasn’t feeling too good. Mid February, we brought a bed downstairs and the GP came to his home to see him. My sister, Hazel and I were there. The news from the GP wasn’t good and Dad didn’t have long; she reckoned a couple of weeks. The GP arranged for the District Nurses to come in to Dad. They would visit every morning and then assess how often the visits on top. As one of five we arranged a timetable so Dad need never be alone. He had constant care. The team of district nurses were fabulous, their care second to none. The support they offered was outstanding, they brought endless supplies. Our uncomplaining Father they said was a privilege to care for. They also commented on what a superb system we had in place for looking after ‘our Bertie’

The service from the NHS we can not fault. The District nurse thought it would be a good idea to get a hospital bed for Dad, he would be more comfortable on an air Mattress and it would be easier and safer to attend to him with adjustable height and the ability to raise his head, etc. Nurse Wendy telephoned for the bed at 11am, it got delivered at 2pm that day, and the nurses came at 2.20pm to transfer Dad from his own bed to the hospital bed at home. Service with a smile.

When I was home and getting treated by my district nurse, she asked how I was and how I was coping – we had a good chat. In the conversation I mentioned where my Dad lived and the area the District Nurses covered. My nurse knew the nurses personally. She had worked with them and commended their great work, she told me my Pops was in excellent hands and they would take great care of him. And that they certainly did.

The district nurses, Mari and Wendy asked if we would like extra nursing help. This came in the way of Marie curie Nurses. They were amazing. Came in twice a day to care after Dad. Nothing was too much trouble for the delightful angels that came to assist with Dad’s care. However, they not only looked after our Father, it was very apparent they were there for us too.

Knowing Dad didn’t have long left on earth I wanted to treasure every moment I could with him. With my health I’m not normally up and ready to go first thing in the morning. And during current restrictions I have been home and not seeing anyone. However, this situation put a different light on things and gave me an inner strength. I would get up in the morning, take off my night feed, get into the Wetroom and get myself ready to go to see my Dad. Getting washed is one of the most essential exhausting activities for me. Turning on the shower, getting washed, sitting on my stool, looking down at my bright red flushed feet. Getting washed exhausts me and brings on a carcinoid syndrome flush. Right from the tip of my feet, all the way up my legs, over my trunk, up my neck, leaving me with a bright red face. My heart thumping; I can hear it banging in my ears. I lie on the floor till it calms down. Meanwhile my skin begins to dry. I climb up on the stool and get myself dressed. Put on my creams, including my Dundee cream. I go to the sitting room where hubby, Steve has done all my meds. Take them for the morning. Put on my feed. Sit for a rest to get some energy built up. And then all set to go to spend some time with my amazing Dad. My brother Albert will be there in the morning too to meet up with the nurses along with me.

We only got just over one week to care for Dad. It was the most precious time and a privilege to be part of. I thank the lord for blessing me with enough stamina to go to the folks; our family home, and be with Dad in his last days. The love I have for my parents pushed me to go on. After the love, security and safe feeling my parents surrounded me with I would give them it back ten fold.

The love and dependability my parents gave me always made me feel safe at home. This is something I have always strived for. To make sure my children feel safe and secure and that they can always come home. After Dad passed away these words struck a heart string or two:

Sometimes I feel lost

You too?

Remember I love you, and

Love brings you home

Who was our Dad? He was a caring, loving and kind Dad, husband, Grandad, Great Grandad, brother and uncle. He would give us kids his last. For Dad his family is everything. He taught us well, brought us up grand and fair. He worked very hard and built up his own business. We always had a car and we were the first folk in the street to have a tv. Mum was the love of Dads life, they loved to travel and enjoyed many trips abroad, including their beloved Germany, especially the Rhineland. They loved to take trips in the car , taking the grandkids out on adventures. When Mum died Dad gave up driving, he said he no longer had a co pilot to go out on journeys with him. Dad never got over Mum’s death, like me he just learned to live with it. Our folks not only provided a loving secure home for us five, but offered our children, and their children a place to come whenever they needed. They welcomed our friends, Mum chatted to them, offering a sympathetic ear and Dad could be found in the kitchen making a sandwich or ten. When it came to parents I reckon we hit the jackpot.

Dad picking plums at mine

It is going to take me some time to as they say get my mojo back. When alone I find myself thinking of something that reminds me of my very happy childhood, or the assistance as I went to university, having my children, moving home, going into hospital, getting treatment, need I go on… and I am reminded of all the happy times I have had with my folks and then the sudden realisation that this will never happen again. My heart sinks and I am filled with dreaded fear. I have to believe that my folks are at peace, I was well and truly loved and so very privileged to call Helen and Albert my parents.

If I feel upset I am not afraid to cry.

Tears fall for

a reason and

They are

Your

Strength

Not

Weakness

My Mum & Dad at Bellahouston Park, Glasgow

The folks in the hot tub

Mum and Dad’s Diamond Wedding Anniversary

Helen, Albert, Hazel

Brian, Dad, Mum, Me

Hold your hand everday

As the pandemic continues.  We are still in lockdown.  Life continues to be on a different path.  Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends.  My nurses; to tend to my gastrostomy tube, change dressings, etc, etc.  And see anyone from a distance at the door when they deliver parcels and mail.

Modern technology has saved my sanity.  Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring.  I know it’s a FaceTime call.  Simultaneously Steve and I say know who that will be.  I click the phone and can hear the joyous tones.  ‘Morning, what are you doing in your Bed Granny’?  ‘Having a got chocolate’ is my reply.  We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace.  It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence.  They have us laughing.  Along the hall we can hear the dogs.  They can obviously hear the girls talking and they are excited.  Can we see Buddy and Bella please.  I toddle Along the hall.  Bella is actually smiling.  They are pleased to hear the kids.  Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you,  the labradors tails start to wag frantically.  Grace calls on Frieda the cat.  Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’.  I go see the beautiful black lionhead rabbit.  The girls are ever so happy.  Right that’s enough I say, granny is wiped out now.  I sit on the seat at the table very happy and blether away .  I maybe can’t see them all in the flesh, however a video call like this makes the world worth living.   We all chat say what’s been happening and what the plans for the day are.

Both girls had plans to play in gardens.  Alexandra said she was going to be drawing and colouring in later.  Grace was going to be playing games.

 

Hold my hand and Smile Each And Everyday

Alexandra drew round her hand in her notebook,  she tore out the page.  Left the page for me with the drawing.  She said I can hold her hand anytime.  She said on a FaceTime call to me Granny I would just love to hold your hand everday

 

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I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.

At this difficult time in this crazy world we need to be grateful for what we have.  Make the most folks.

Alexandra and Grace:

Such Kindness over the Easter Weekend

As we all know and expected this Easter Weekend is somewhat very different.  With most of us being in isolation and being asked to stay at home.  I expected to feel lonely and miss the activities that I had been expecting to do and the people I was looking forward to seeing. However, there were a few folk that did some very nice act of kindness towards myself, Steve and my labs which made me feel very special, loved and happy.  Certainly not lonely at all.

 

Just before Good Friday, my nurse was in to service my gastrostomy tube and change my dressings.  As well as check on my well being, and see how I am doing.  As my nurse was leaving that day she left an Easter card for Steve and I and doggie treats for Buddy and Bella – all in a lovely Easter bag.

 

I got a special FaceTime from my 4 year old granddaughter Alexandra to let me know she had drawn pictures for us.  She had done a special rainbow for our window and would post it through our door.  Her dad sent a text of her holding the picture.  I was so excited to get it.  Words cant explain how much we miss seeing her,  She usually visits every weekend and when you are used to seeing a grandchild on this regular timing, this lockdown period feels like lifetime.  She is my pot of gold at the end of the rainbow.  I was in hospital for 12 weeks with sepsis and hardly saw anyone however I felt poorly and had no sense of time on many days.  This is different.  However, with the technology we have and keeping a positive attitude we can get through this.  Chatting on FaceTime and sharing what we have done throughout the day makes me smile, we laugh and sing, I just love my FaceTime time.

 

 

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We have had a relaxing Easter weekend.    Writing, gardening (for Steve) some tv and lovely quality time together with the labs.  I was in the Wetroom putting on my creams when I heard Bella ‘friendly barking’ so I ignored her.  Half an hour later I went through to the kitchen to put on my feed.  As I reached for the pump I noticed my mobile phone had several notifications.  As I sat down to read them, I noticed one was a message from Danielle.

Danielle has been my friend for at least 23 years.  We have been through a lot together.  I know if I message Danz and ask can you please come here she will come.  I have been there for Danielle emotionally and I know she will be there for me.  Again I am so grateful for technology so we can chat ad text.  So what did the message say?  It said.  “I’ve  left something at your front door xxxx”. What was left?

 

 

The most beautiful canvas, of course it is zebras.  And cakes for uncle Steve.  He will love them.  Tonight I will light one of Natalie ’s candles and give her an extra special thought, not that she is ever far rom my mind.

A massive thank you to my special people this weekend, you are what keeps me going.  You all know me and what makes me tick.  Why, perhaps its because I love you guys let you into my heart and you know what makes me happy.

Why zebra?  Neuroendocrine cancer is rare.  Zebras are rare.  When doctors are getting trained they are told

  • when you hear hoofbeats.
  • Look for horses not zebras

Many charities and people with net cancer adopt the zebra as their mascot.

 

My beautiful rainbow picture all coloured in.  Up in my window showing with pride.

 

 

 

Natalie Ann’s Candles

 

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Keeping Me Company

As we know the  restrictions  on the UK during Covid-19  

are continuing over the Easter weekend and well into the rest of April.  Although I’m missing my visitors coming to the house I have been enjoying the FaceTime calls and many texts and emails I’ve been getting.  The messages really keep me going and cheer me up.

So who do I see?  Who was keeping me company.  My only visitors are my nurses; they come to check on me, service my gastrostomy tube, change my dressings and administer my octreotide treatment every 14 days.   I live with my hubby,  and our two labradors, Buddy and Bella.  Buddy is a great help he knows when my sugar level is low, or  when my heart rate is playing up.  Buddy and Bella are two beautiful labradors Buddy is a stunning fox red and Bella is a lovely little yellow lady.  They are husband and wife; We have bred them together twice and had 21 babies.  They are wonderful company, give the best cuddles.  Im glad the dogs do give the best hugs at the moment,  its a really weird time.  Even my own home surroundings that are so familiar can feel very alien and so damn well lonely a lot of the time.  I’m so pleased I’ve got my hubby and dogs at home and my regular face timers, phone callers and folks that text and email otherwise I would be feeling like if I didn’t die of Coronavirus I may die of a broken heart or loneliness.

 

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One of our nurse’s has taken a shine to our labs and gave them an Easter present.  They were chuffed.

That reminds me I better get something for my loyal lab’s Easter and order their food on https://rcm-eu.amazon-adsystem.com/e/cm?o=2&p=13&l=ur1&category=amazon_business&banner=1F498HGV07F7YKE5JQG2&f=ifr&linkID=921d9025bcbdbe51885c15afeab9a0a8&t=smileeachande-21&tracking_id=smileeachande-21” target=”_blank” rel=”noopener”>Amazon

 

The one thing the dogs and I love is listening to music in the kitchen.  We just say Alexa play “a certain playlist” from Amazon Music . Bella is a dog that likes to sing, Buddy is a dog that likes to dance.  They really are amusing and great company.

Right now there is a special offer for three months on the subscription.  Click on the link below to see.

https://rcm-eu.amazon-adsystem.com/e/cm?o=2&p=48&l=ur1&category=amazon_music_bounty&banner=1S7QPRHBCK6W9HRPHV82&f=ifr&linkID=1dffa2c820211d5fd70cd355e422e3f0&t=smileeachande-21&tracking_id=smileeachande-21” target=”_blank” rel=”noopener”>amazon music

 

The Arrival of The Coronavirus

We are approaching the end of March 2020 and this weekend we should be away with friends from the The Dunedin Chapter  ,

I so enjoy being part of this group.  It is our biker family.  From the second we joined we felt part of something.  A warm welcome always awaits us, a support network is available in variety of ways.  Help with the physical Harley-Davidson® motorcycles; buying, servicing advice, etc.  Things to do; runs, rallies, etc.  Friendship; many friendly faces, great companions, lots of advice, etc.  Socialisation; we all get together and have meetings, weekends together, nights out, lunch meetings, breakfast clubs, chippy runs, etc.  All in all I love belonging to The Chapter.  We are now on to our second Harley-Davidson®, I have been on motorcycles since I was under 5 years old,  on the back of my brother when my feet couldn’t reach the footpegs.  I have been a pillion to my hubby since I was 17 years of age and I’m now nearly 54.   We have had motorbikes the majority of our married life.  Fifteen months ago we thought we would dip our toes in the water and visit West Coast Harley Davidson for a look at the bikes and what they had to offer.  before we knew it we had  decided it was time to get ourselves a Harley, it was a little Street Rod.  We thought best start small  and not break the bank.  Just to see how we would like the ‘Harley way of life’ and boy do we love it.    While we loved the wee bike, it was just that, too small and So a few months later we traded it in for a beautiful fatboy low.  We got this one at Edinburgh Harley Davidson

This weekend a trip to Aberdeen had been organised by our Harley Davidson enthusiastic friends.  We were all getting together to stay a night in a hotel and have a night out and raise money for the air ambulance.   The plans were, to take a drive up together on the Harley Davidsons if the weather was warm enough and I was feeling up to it, if not take the four wheels and book in to the The Craighaar Hotel in Aberdeen

I was so looking forward to going to Aberdeen. Due to my health, the neuroendocrine cancer, the carcinoid syndrome, the treatment I need and the fact that I get fatigued very easily I don’t go out that often.  I find life difficult, some days a general task feels like I am walking around with a 25kg bag of sand on my back.  Needless to say I am very familiar with my own surroundings and am used to being in the 4 walls I live in.  I can be home for three weeks without crossing the door.  My district nurses come to ‘service’ my peg.  Change my dressings, administer my octreotide injection and deal with any other at home health condition I may require. They are wonderful and I couldn’t do without them.

Although I am used to spending time at home on my own, with the company of my two Labrador’s within my four walls I do spend quality time writing, which I enjoy a great deal and I have embarked on a course which I love the challenge.

Suddenly the world has been hit by an eerie storm, one which we have never seen the like before. The human race has been struck down with Coronavirus.   The arrival of the Coronavirus is here.  For a great deal of folk it has been fairly harmless, however for many it has proven deadly.   To find out a little about coronavirus visit – https://www.nhs.uk/conditions/coronavirus-covid-19/

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Countries such as Spain and Italy are ahead of the UK and have many deaths and have put in strict measures. Here in the UK, we have had to take on a different way of life. Schools have been closed, where possible people are working from home, people are instructed to stay home unless exercising, which is only once per day. Social distancing has been put in place, with everyone to keep 2 metres apart. All these measures have been put in place to try and Stop the spread of Coronavirus. This virus is escalating and getting out of hand, we need to self isolate and stop it. Many people have it, are in hospital, some very poorly and on Ventilators. It’s all such a worry. People are wearing gloves, masks and using hand gel in abundance. Hospitals are running short of ventilators. There are more people needing the machine that the country has; something has to be done.

A team put their heads together – staff from formula 1 Mercedes , staff from University College London hospital (UCLH), and a team from university college London to adapt and improve existing CPAP in a process known as reverse engineering.   Basically they have helped create a breathing aid to help keep coronavirus patients out of intensive care.  You can find out more at the following – Mercedes F1 team helps create breathing aid

Life has become very strange for many people, our country is in lockdown, bars, cinemas, restaurants and many shops are closed.  Public gatherings are banned.  Plus many more other measures are put in place.  Some people feel sorry for themselves and are sitting at home whining and moaning, complaining they are bored and wishing they could get out of the house.  Whilst its understandable that they may be bored, sitting at home when they are used to working several hours per day and keeping busy.  Or going out and having fun, playing sports or going to the cinema, etc.  However, these restrictions have been brought in for our own good and it won’t be forever.  We should take time at home, learn a new skill, cook, draw, do a bit of gardening, enjoy reading a book, do some knitting or sewing, play old fashioned board games.  And most importantly our thoughts and prayers should go out to people that are in ICU beds in hospital, on ventilators, fighting for their lives.  This virus not only attacks the vulnerable like me, or the elderly like my 87 year old father, it sadly took the life of a young lady of only 21 years of age with no known underlying health conditions, it also took the life of a 54 year old doctor, the youngest person to die has been 18 years of age.

I did read a couple of pieces of good news the supermarket Asda is donating £5 million to   fareshare and  The Trussell Trust to help the country’s most vulnerable people through COVID019  Asda will prioritise access to stores for NHS staff as of next week every Monday, Wednesday and Friday 8am – 9am in larger stores.   Well done Asda

I know the next few weeks are going to be very trying for us all.  The NHS are doing a fantastic job in looking after the patients in the hospitals, at home, etc.  Carers are looking after the vulnerable the best they can.  Supermarket staff are stretched and pushed to the limits at times, the shelves look like its christmas, with the exception its not happy, clappy cheerful customers, its frightened folks walking into the unknown.

For me tomorrow Ive got my amazing district nurses coming to do my dressings, service my tube and give me my two weekly octreotide.  Tomorrow the nurses will be gowned up, masks on.  Whatever will my labradors Buddy and Bella say, they won’t be getting their treats for mummy being a good girl and getting a very large needle jagged into her.

First Person with Net Cancer that made me smile :)

Over 6 years ago I went to an information day hosted by   Scotland’s Neuroendocrine Cancer Charity; The Ann Edgar Charitable Trust  I went on to go to support meetings every month.  There is a group of us that have became friends and a firm support to each other, which is lovely.  Some days its good to be able to talk to someone that you know really understands how you feel and you never feel patronised when talking to each other and at times you really need that ‘I know how you feel’ conversation’

The first person I saw at the information day was such a lovely chap and his wife.  He was  smiling from ear to ear and guiding all participants that were going into the conference.  Despite having never meeting the man before you couldn’t help smiling back, he had the kindest gentle smile.  He would stretch out his very long arms and direct  you into the room.   We have became friends very quickly and seen each other at most meetings.  There is a nice core number of us that try and get together and blether and spend time together.  I have had help organising the tea party and we all went out to the theatre, day out on the barge, a night in my local pub, singing songs and doing magic tricks and said friend getting up and helping out with rope trick – oh boy we  had so much fun.    Norman was twenty years older than me and called me the youngster.  I felt he looked out for me in a way when we sat together, it was his nature.  When I organised the tea party, and my goodness what a lot of work went into it, he said, now young lady before we open the doors to the public you get half an hours shut eye.  Sometimes he would quietly talk and other times he would stretch his long arms like a giant and bellow what he wanted his audience to hear.  Norman’s first words to me were always and how are you today my dear, is life treating you kindly?  He would have that big grin on his face and it would warm my heart.   Although Norman was his own man, him and his wife came as a pair and they were very much together.  One of those most beautiful relationships each partner knows when the other has had enough and needs to leave, when they are tired, hungry etc.  They have the best tales to tell from their travels on holiday.  They separate across the room and yet communicate with just a glance and before you know it they have made a decision and you are saying cheerio to both of them, see you next time.

This blasted life limiting illness  at times imprisons us in our houses, makes one feel so ill you can’t do a thing, medication, hospital appointments, etc become a way of life – however, meeting each other and sharing some of the good and the bad really helps me get on with my journey.

I found out sad news last week, my pal passed away.   Norman was diagnosed with neuroendocrine cancer 13 years ago.  I feel privileged to have known him and spent time with him and Margaret for the last 6 years.  I was diagnosed with carcinoid syndrome 10 years ago, whilst a sad occasion like this leaves one thinking about our own mortality, I count every day as a blessing and am happy with the treatment and care I’m getting from my consultants, doctors and nurses.

Today was Norman’s funeral, unfortunately with the coronavirus the world has gone a little crazy.  We are on a lockdown situation and are living under certain restrictions.  Funeral services are allowed to go ahead, however are restricted to immediate family.  I was able to watch the service on a live podcast.  I sat in the comfort of my own home in front of the open fire and watched Norman’s funeral service.

Norman Boe was The First Person with Net Cancer that made me smile 🙂  and I will miss him so very much.   Thank you for being my friend.

“Go my friend and enter into eternal joy and peace, dance with angels in eternal light and love”

Warm Welcome in Ellon

As I woke on a bitterly cold February Saturday morning to the sound of my granddaughter’s singing voice I remembered I had something to look forward today.  We are making the trip over the Queensferry Crossing, over to Fife,  driving up the M90.

For me this is the best week for travelling, Evelyn had been in on Tuesday not only to service my gastrostomy tube but to administer my octreotide.  This is a malignant suppressant injection I get every 14 days.  It is licensed for every 28 days at maximum dose for people like me with added complications of carcinoid syndrome.   My ‘numbers’ are on the high side with my 5hiaa, my symptoms are awful and so we have it – maximum dose every 14 days.    The nasty injection is worth it.  Fewer visits to the bathroom (reduction from 12 times bowel movements per day to 4) and looking less like a character thats on tour with Ribena Juice Company.

The Our destination is a few miles north of the granite city, Aberdeen.  I have visited Aberdeen on numerous occasions.  My Grandmother is from this wonderful area of the world and my great aunt after a great deal of travelling finally settled and ended her days in Aberdeen and I have such  fond memories of visiting with my Mother as a child, playing in Duthie Park, building sandcastles at the beach. There is so much to do.   My most favourite thing alrways a visit to The cathedral church of St Machar

We were travelling up to stay over with relatives, Steve and I are not always the easiest house guests, we both blether at a million miles per hour, talk over one another, and finish each others sentences.  We bring an awful lot of luggage, I alone need a suitcase and a holdall for one night’s overnight stay, I have my pump, a lot of medication, syringes etc. I know I have my blog, however we are private folks and there are things we like to keep to ourselves.  We very rarely stay with family or friends, we usually book into a hotel however we both felt we would feel comfortable staying with Pauline and Les for our first trip to Arthrath.  Located 7 miles north of Ellon.

 

 

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Pauline sent me a photo of the sign at the end of their road, heading to their house.  The road is rough.  To me if it was covered in snow it would be more suited to skis than a car,  the large ditches in the road resemble the moguls on the ski slopes I have skied, it distinctly reminds me of the white lady I skied on the cairngorms, everywhere you turned there was another mogul to go down.  Ah, such happy memories.  As we drove down the road to the house the car bounced up and down, in and out of the ditches.  I had the feeling I wanted to lift my legs, I could hear my ski race trainer from my youthful days, the wonderful Hanz Kuval, say bend, stick, turn. As the now not so shiny BMW’s wheels dropped into another deep hole.   We parked round the back of the house as recommended by our hosts.  And so it was so much easier to get in the house, sheltered from the wind, a straight walk from the car across the decking into the porch.

 

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Where a very warm welcome awaited us.  From the minute we walked in the door nothing was too much trouble.  Thirty seconds in and the kettle was on.   The most beautiful  house with comfortable furnishings, welcoming signs of grandchildren; some toys, photographs, canvases, etc that made me feel very much at home, however, gave me a pang in my insides and a yearning to see my beautiful granddaughter.  There is an array of animals located in various parts of the house – they are amusing and you feel you want to have a conversation with them.   And I most certainly did.  Although I’m not sharing any secrets.  As I said our hosts were fabulous, they couldn’t do enough for us, coffee, tea, beer and wine on tap.  Nibbles to munch on whilst lounging on the sofa and leisurely blethering.  A lovely enjoyable afternoon to sit and have a natter, let me get another afternoon feed on pump and a bolus before getting ready to go out for the evening.  Pauline is the constant nurse and continually picking up after me, a welcome help and yes you feel safe and secure in her company.

 

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I go through to our bedroom for the night to get ready, the room is huge, I more than appreciate the space, plenty of room for all my gear.  The bed is ever so comfortable with luxurious bedding and the most comfortable plump feather pillows.    I was most appreciative of the large ensuite bathroom.  It was bigger than most peoples family bathrooms.  there was a stand alone bath, toilet, sink and bidet.  With plenty of room to move around which is very important to me, especially first thing in the morning when the bones are not quite moving as they should be.  The room is so inviting I could climb onto the bed and snuggle in and relax.  However, I know I will enjoy the company of my hosts for the evening and get myself ready.

Les did the honours and drove us to Ellon .  We were booked into The New Inn Hotel, Ellon for a meal.  The hotel was bustling and nearly every table taken.  We arrived half an hour earlier than our reservation.  The staff greeted us with a warm smile and were very accommodating and set us up a table within a couple of minutes of us arriving.  We ordered drinks.  Looked at the menu.  The delightful waiting staff were very efficient and very soon my three companions were enjoying their evening meal, Steve and Les began with starters which they enjoyed immensely and then fairly quickly the main meal came,  our hosts both ate Seabass, my hubby ordered the house burger and I picked at the scampi.  We had this delightful waiter that looked latin, he was tall dark and handsome.  Most of the evening Pauline and I teased him, as we ordered our desserts we asked where he came from since we thought he had an unusual accent.  He told us he was from Peterhead,  Oh we thought you were from somewhere like Italy we said in disappointed voices, you are a “Peterhedien”  oh what fun we had.  The desserts arrived,  and yes, naughty me  had some,  I had a little eton mess.  And yes it was worth having.  Steve had the cheese cake.  A nice touch on top of the cheesecake is scottish tablet.   We all enjoyed the food, the service was excellent.  Would I go again.  Certainly would.

 

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On leaving the hotel we went a short walk across the car park to a friendly pub,  The Tolbooth Pub, Ellon.  As I walked in I soaked in the atmosphere; it was warm and friendly.  It was busy with a variety of ages of folks.  Sitting up at the bar stools were a group of ‘middle aged ‘ folks.  At various tables were various people, as were in the lovely booths.  We made our way to a table beside one of Les and Pauline’s friends.   In one of the booths were five young lads, I’d say in their early twenties.  They looked happy and were sitting blethering and laughing, next thing they started singing The northern lights of Aberdeen.  I felt my heart pang, it was a song sang to me by my Mother, one we would sing together.  They sang, when they got to the last line Pauline and I sang along “To my home in Aberdeen” I could feel the tears, however happy tears.    I turned and looked over to the lads at the booth the young chap with the curly hair lifted his whisky glass in my direction, gave a wink and a cheeky smile – made my night.

On returning to the house Pauline and Les looked after us, we chatted into the small hours of the morning and before we knew it, 3am hit the clock.

I woke on Sunday to my FaceTime call with my 4 year old granddaughter, Alexandra, we had a wonderful discussion.  Her first words  of the conversation were you are coming home today and final words were I love you…. lots of stories in between.

At 10.30am we went to visit Steve’s auntie Margaret in Aberdeen before going out for lunch at  The Cove Bay Hotel . There were 11 of us for lunch.  And what a great lunch it was.  It was so lovely to spend some time with Steve’s cousins and have time for a catch up and a blether.  We had a table by the window with a beautiful view of the sea.  Auntie Margaret and I were right by the radiator, we were toastie.

After lunch Steve and I made our way back to East Lothian.  We had a quiet drive home.  It didn’t too long at all.   It was lovely to see our cottage.  Spent a relaxing evening with our dogs at our feet.

A massive thank you to Pauline and Les for introducing us to Arthrath.  And making us feel ever so welcome and not like visitors at all.

Big thank you for The Warm Welcome in Ellon

 

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.  

Dedication of my nurse & new dressings

Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube.  After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage.  It is apparent that the surrounding area is never going to totally heal.  The health professionals have tried their best.  I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings.  My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore.  After the trial and error of creams the best one and the one to stay is the cavilon lollipops.  They act as a barrier, and its a wonderful life saver I can tell you.  As for the dressings, well many have been tried and tested.  At one point I looked like I had been shot.  I was covered from my breasts to my waist.  The nurse on the ward thought it best to keep it all sealed.  This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast,  dressings, and good old fashioned crepe bandage.  The dressing that worked was the foam dressing.  A hole was cut in the dressing and it was wrapped round my peg.  The only trouble with this is the amount I leak out.  The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.

 

 

My nurse, Evelyn, that comes in and changes my dressing at home noticed this.  Evelyn is a dog with a bone.  One day she came in with a booklet and a different dressing.

Do you fancy giving this a go?  She asked me. Can only give it a try was my answer.

So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply  it.    This dressing is designed to absorb the leakage.  And guess what – it does it so well 🙂   I have even noticed a reduction in the odour.  The combination of the barrier and the new dressings, my skin is much improved.   Its far from perfect and it will always leak.  But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful.  Cant see me  shifting from the Keramax dressings in a hurry.  And as for my nurse well she is a star.

Well I’ve Done It: I’m 50 :)

Well today its my birthday.  I am half a century – the big 50.  Many folk hide their age, dread being fifty and pretend their younger than they are.  Me, I’m happy to be here.  I feel privileged to say I have hit such a milestone.  My fortieth decade was a mixed one.  There was many happy events, lots of love and laughter which keeps me going.  However, I  also had to face a few difficult life challenging times which were so difficult.

 

Steve & Me

Happy to get up the castle

 

 

I had many occasions to have cause for celebration.  Both my sons attended university in this decade furthered their education.  Our delightful labradors, Buddy and Bella  came into our lives; the unconditional love they give is amazing, I really can’t imagine my life without the hairy beasties.  We delivered a litter of puppies from them, and have kept in touch with puppies and owners.  Now made some lovely friends.  Some wonderful children have been born in the last ten years who are really close to my heart.  There have been a few very happy weddings.  I have mad many new friends.  Need I go on.   Life is precious and for living, it is all too easy to get bogged down with our problems.  On a personal level Steve and I are as much in love as we were when we were teenagers.  I believe this is my weapon – Love.  

The one thing I am certain is in the last ten years I felt loved.  The first five years were very difficult, I suddenly lost 3 stone in weight, felt very ill, and no-one seemed to know why was wrong with me.  It took a while to get my health situation sorted out, but with the love of Steve, the boys and my parents I felt secure.   I’ve had a few hairy moments been in hospital with septicaemia for 7 weeks, and boy was that scary.  Now got my gastrostomy tube fitted.  Life isn’t always easy with a stoma.  Ive been admitted with several infections.  However, its much better than it was,  I have a fantastic medical team and nurses that come to the house which is fantastic.  And I’m still here to tell the tale and thats whats important.

The second half of my forties were slightly more challenging than the first emotionally.  Amongst other things:  A very close uncle died, my youngest son had extensive brain surgery, my Mum died, my eldest son had meningitis, hubby had eye surgery for detached retina.  But you know what we got through it all.  The boys are doing well.  Steve still has problems, and only had surgery last week again, but the brave bugger is dealing with it the only way he knows – full of courage – like a lion.  It will be three years on the 9th August that Mum passed.  I miss her every day.  We had one of those relationships that we spoke or text every day.  Mum wouldn’t want me moping around.  She was a great character, a beautiful woman that I looked up to and admired.

One day in the consulting room at the hospital my professor handed me a card.  It was for the NET Tumour Support Group that I now meet regularly with.  .  We have all became great friends.  Sadly, one of the friends that I was very fond of passed away last year.  However, I would rather have  spent time with her, laughed, cried, etc, even for one year and then felt the pain of her loss than not have met her at all.   we all meet regularly every month and have a great time.  Its not doom and gloom, we meet at each others house or in the pub.  Partners, friends, carers go too.  You can have a look at the charity’s website to see what work they do:  www.taect.scot  I’m looking forward to helping organise the tea party in Pencaitland in November for NET Cancer Day.

I’ve had cards delivered for my 50th birthday.  Including cards from friends in the Net group which is lovely.  One of my friends in the group, Barbara was very thoughtful, because my eating is restricted, she made me a flower birthday cake.  I could have cried, its so beautiful.

Looking forward to spending my 50’s  with Steve.  Doing what I enjoy.  Taking photos,  writing, cuddling my labs, crafting, etc.  My big aim is to get back into baking and cooking, just because I’m not eating as I did doesn’t mean I should stop what I love.  I got a beautiful mixer last year and boy is it going to get its ass worked off now that I have got over that hurdle.    Have a great weekend guys.  After Ive finished my treatment today My hubby is taking me to The Edinburgh Festival tonight and tomorrow night.  Tonight its Craig Hill, tomorrow its Nina Conti

 

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