Drive through Edinburgh

After my appointment at The Western General Hospital in Edinburgh my hubby was patiently waiting for me. He picked me up in the convenient pick up drop off area outside the hospital. We usually go together, however do to Covid, I was restricted to going myself. We made our way out of the hospital grounds and got ready for our Drive through Edinburgh.

As we drove along Crew Road there were works getting done and the road was closed towards orchard brae forcing us to turn left. We made our way along the road and passed the police training college, saw a couple of dogs in the field and then passed Broughton High School, I had a memory of going to the old Broughton High for health promotion talks, and remember proudly going to the police college with Arthur, when he got a commendation award; what a lovely day that was.

Driving through Stockbridge. The sun was shining, there were hanging baskets flowering beautifully outside many of the elegant Victorian and Georgian houses. This bustling vibrant area on the water of Leith is filled with speciality and charity shops, and delightful cafes and pubs. I love Stockbridge; the new town is my favourite area of Edinburgh. If I lived in Auld Reekie this is the locality I would choose to live in.



Cruising along George Street I saw the changes that were happening over time. What establishments are still here, and what has ‘disappeared’ from the high street. The Standing Order was the first building that jumped out at me. All over the world there will be many well known financial institutions that are now coffee shops, or pubs or restaurants, somewhere for folk to sit and chat. Rest their weary bones and share a story or two along with a drink.


As I headed to Southside Edinburgh, I passed a block of flats that were on a corner site in Newington area. This site used to be a Ford Garage that my sister worked in the accounts department. My friend rented a bedsit on the main road when we were at university.

Gosh Helen finished up at the Garage over 40 years ago and Jennifer rented the bedsit in the mid 1980’s. Jennifer visited me yesterday I was telling her about my journey and reminiscing, we started chatting about her accommodation hunting when she came down from Calendar to study in Edinburgh…….

Jennifer and I met at uni, we became friends the first day of term and have been stuck with each other since. Jennifer came down from Calendar and needed accommodation, the uni gave her some recommendations. She came to my parents armed with this A4 piece of paper. We were going to the addresses. My brother Albert dropped us at the first place on the list, it was near the shopping centre, he would go shopping we would view the room. Oh my goodness; the room was ok, very basic, shared facilities which werent so nice, and the room mates were less desirable. So lets just say this place was a big fat no. We tried a few other places on the uni’s recommendation. Absolutely non suitable. My Mum brought out The Scotsman. https://www.scotsman.com We looked in it, there was an ad for a Letting company in Home Street, Edinburgh.

Off we went to Home Street. We walked in to this office with a white haired lady with 2 dogs surrounded with so much paperwork. I actually felt like I was going for a seance. I can tell you Jennifer and I felt frightened, why we didn’t know. The business was ‘real’, the staff were genuine, informative and very pleasant. And they had dogs, something I especially love. I think it was just the fact that the white haired lady was rather eccentric. The room had a creepy feel. However, the lady was very kind to us, she explained what properties she had on the books and what she thought was suitable. She explained locations and terms of payment etc. She thought the room at Newington would be suitable, told us there were already some young ladies in the building and the location is lovely. Big bonus, the landlord was a really nice man. We were sold. Sounded ideal for Jen.

We made our way from Tollcross to Newington. Met by a raven headed gentleman. True to her words. The whole property was in good condition. The bedsit on the ground floor had its own kitchen, it was ideal. No sharing, no messy dishes, etc. Jennifer decided to rent it. As friends it was ideal, not too far from uni and only about 3 miles from my parents house.

Many properties have changed hands over the years and places we have got comfortable going to are no longer there. However, many of these alterations are good news and society is reaping the benefits both socially and economically. As the saying goes out with the old and in with the new.

Harley Davidson run in The Scottish Borders

After a day of swithering whether I should accompany my hubby and some of our good friends from https:www.dunedinhog.com on a mates run. I hadn’t had the best of days, had to phone my medic team and get one of them to come in on an emergency. After only two weeks my gastrostomy tube had to get changed. Believe me it wasn’t a pleasant experience. I rested all afternoon then decided the company of good pals and some fresh air would do me the world of good. So at 5pm on the Friday evening I got myself into my bike gear all ready for a Harley Davidson run in The Scottish Borders.

My hubby Steve spoke to our chum Scott and put it to him “show us your ride” Steve and Scott messaged each other back and forth. Scott and his wife Shirley lead a scenic route. We met up with them in Galashiels. The drive from our place in Boggs Holdings, Pencaitland to Galashiels was a reminiscent one. We took the A6093 to the junction of the A68 and turned left, took the first right and headed towards Gorebridge, passed the entrance of Vogrie Country Park, my mind took me back to many walks I went on with my hubby, children and dogs, such happy times we had, I now hear lovely stories from my grandchildren when they have visited and played at the park and walked the dog. We made our way along the narrow twisty road towards Borthwick, passed Borthwick Castle, where Mary Queen of Scots sought sanctuary in June 1567 when she learned Scottish nobles planned to capture her. You can find out more about Borthwick Castle at https://www.borthwickcastle.com I was happy to drive pass our sons old primary school, Borthwick Primary which is now a private residence. We drove up the twisty steep incline to North Middleton.

From North Middleton we took the A7 and headed south. Our destination was to meet up with our group in Galashiels. The drive down was wonderful. We enjoyed a somewhat familiar drive, one we did regularly several years ago, what seems like in another lifetime. The scenery was beautiful, typical of Scottish countryside, as I looked ahead clouds rolling in the blue sky, many shades of green on the hillside; home to the happy skipping sheep, bleeting as we drove passed them. The river looked inviting as we drove by, I could have asked Steve to stop at the side of the road and took a paddle. As we drove down the A7 we rode through Falahill, Fountainhall, Torquhan, Stow, Torsconce, Buckholm and finally arriving at Galashiels.

For the hungry horace’s we met up in Macdonalds car park. For those who wanted could join an organised social distance queue for food or got to the loo. Whilst the others ate, went to the loo and blethered. I sat on the ground in the car park and caught my breath. I don’t mind admitting I was feeling a tad wobbly when I reached my milestone, Galashiels and I could have done with going home. The ride from ours to Gala was more than enough for my body on this particular day. However, my want and desire to finish the route, be out with our friends and enjoy the time on the fatboy outweighed how I was feeling. Despite feeling my heart beating so fast that I thought it was going to jump out of my shirt. And the worry that my blood sugar wouldn’t keep up all the way round despite having my gastrostomy tube running. My body ached. Feed checked, all sorted and feeling better. After the rest, I took photos of the others and their bikes. When we were ready we took the A7 and headed towards Hawick.



Scott took the lead with wife Shirley in her Harley Davidson behind him, both Borders folk made it ideal for them to choose the route. I was looking forward to this run. Will it live up to my expectations? I hope so…….

We drove 6 miles from Hawick, Scott took us to the picturesque village of Bonchester Bridge, lying on the Rule Water. Leaving the delightful village the route did not disappoint and the scenery just kept on giving as we headed over towards the A68 and rode to the border view point.




The Scotland England Border on the A68 is an excellent opportunity to stop, take a break and a wee photo. We all had a great time; even had time for The Vickie Green Challenge.

Vicky Green Challenge


We stopped for a while at The Border View Point, giving us a good rest point as well as the opportunity to take photographs. Then had an enjoyable drive down to Jedburgh. Memories came flashing into my mind as we drove through. Passing the rugby ground, seeing the large posts, wonderful recollection of my son Stuart playing second row for Haddington. The sheer delight of Haddington under 16’s winning the cup. What a day that was. Such a great feeling standing at the sidelines cheering the team on, screaming at the top of your voice. Regardless of the weather, rain, hail or shine. Continuing our journey we made our way to St Boswells, turned right, opposite The Buccleuch Arms. Lead by Scott we climbed up a beautiful steep road with some unpredictable twists and turns. Drove a route with amazing trees, lush grass and beautiful plantation. We arrived at Scots View; one of the favourite views of not only Sir Walter Scott, but of my parents. Looking over the valley of the river tweed I could clearly see why. It is not only a beautiful view, it is calming and relaxing. I felt quite at one with myself soaking in the atmosphere. My parents took my sons Tony & Stuart and their cousins Lindsay & Robert here, as well as many other places. However, Scots View is particularly memorable not only for the view, but it was the day my son Tony fainted.

Scots View



After spending time at Scots View we took the back road and headed to Lauder. Thereafter, our wonderful hosts, Scott and Shirley headed back to their home in Ancrum. The Edinburgh based folks headed towards auld reekie and Steve and I made our way to Pencaitland. We went straight down the A68 turned right signposted Haddington on the A6093, through Pencaitland till we reached our home in Boggs Holdings. Buddy and Bella were pleased to see us, as I was to see them. As much as I enjoyed the ride it was good to get my feet up. I had a beautiful evening with lovely people. It’s so nice to be tired for a reason. It’s good to meet up with others and see places I haven’t seen in a while, especially ones that provoke memories. Looking forward to the next run.


Scots View

Turn that frown upside down

I would like to introduce a young lady who lives in Midlothian, Scotland. At present she works in an office however dreams of one day working full time in the writing world. Whilst chatting to Beth Merry I can feel her frustration and want to break out and get those fingers tapping the keys and tell the world all she has to say. Although Beth writes her own blog https://bethanybloggswriter.wordpress.com I suggested she write a guest blog for my site. Since my site is smile each and every day. I gave her the topic “smile everyday”. This was the heartfelt article I got back from Beth. Its about one of the hardest times in her life when she found it difficult to smile, whilst she was surrounded by sunshine, all that energy and heat failed to warm her heart and make her happy. Despite the rays from the big yellow sun and the beautiful blue sky Beth felt cold and alone and at many times incapable of smiling and having that warm butterfly feeling of comfort inside you when you know you are safe, loved and belong. Would she ever feel like this again, and be able to turn that frown upside down. I hope you enjoy it.

Why 2020 is Better than 2016 to Me

Before 2020, there was another year that as a society collectively decided was – to put frankly – absolutely awful. 2016 saw many beloved celebrity deaths, worldwide panic over the election in America, terror attacks seemingly around every corner, and plenty of other horrors that left the world pausing to catch its breath on the 31 December that year and crossing every finger and toe that 2017 would be kinder.

For me, 2016 was particularly awful because both my mum and my grandad sadly passed away, and I had to pull on my grown-up pants at 19 years old and pretend I was strong. It was one of the hardest years of my life; and now with 2020 being deemed an even worse year due to the pandemic, I’ve had time to do some reflecting on how much has changed.

Moana Beach, Adelaide, Australia

In 2016, I was living in Australia. My family had emigrated when I was 10, and while the first couple of years I had enjoyed, the shine eventually wore off and I found myself desperate to make my way back to the UK, back to my home. I felt increasingly out of place at all times, and desperate to tell people that I didn’t belong – the fact that I had absorbed the accent almost immediately did little to persuade folk. As the next of kin for my mum who passed away in June, I was left in charge of putting her affairs in order for myself and my younger sister which meant a lot of phone calls I didn’t know how to make and, more importantly, arranging a funeral. I grew up a lot that year – and fast. I was still studying, still working two jobs and getting over a lot of heartbreak. It felt like things would never improve.

Seafood Rise, Adelaide, Australia

Fast forward to 2020. As I write this, I’m sat in my house in the Scottish countryside that my partner and I bought together nearly 9 months ago. He’s putting together some units to complete the massive desk he’s constructed for our home office, and I’ve got a stew bubbling away on the stove. I’ve had an uneventful day at work – Sat at my dining room table lockdown style of course – stretching my writing muscles now. Saturday was my birthday, and I had a quiet barbecue in our newly landscaped back garden with some family, and on Sunday my partner and I ventured out to Gore Glen to finally see the beautiful waterfall and connect with nature. I can breathe fairly easy these days and my worries are far less significant than those of 2016

Gore Glen, Midlothian, Scotland

I never could have predicted that in 4 years time I’d be in the space to feel this content. In a time where my world was crumbling around me, I pushed through to venture by myself to the other side of the world where the love of my life and I have made a life together for ourselves. Coronavirus be damned – the opportunity to look back at the last 4 years and see how far I’ve come make all the lockdown restrictions worth it.

These days, I smile everyday because while there are still a few things beyond my reach. I’m a damn sight further ahead than where I was in 2016.and there’s so much to be grateful for! I’m home in the UK where I belong, I wake up everyday to my amazing partner and the views over the Pentland, and I have room to grow at my own pace. What’s not to love?

Me, happy, home

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 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

 

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.

 

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.