NC500 Virtual walk

Since March we have had lockdown, restrictions, a new way of life. And I do believe we need to get used to it. This coronavirus isn’t going anywhere anytime soon. Some of my normal life still happens; my nurses come in and look after me. I get my awful needles injected into me for my treatment. I still enjoy writing very much, , making up stories and doing charcoal drawings, taking photographs, snuggling into my beautiful labradors. Trying my best to live life with a half full glass. I do miss getting out on the harley with Steve, going to see our friends at the Dunedin Chapter http://www.dunedinhog.com, and I miss my meetings at The Ann Edgar Charitable Trust http://www.taect.scot. Ive been inspired by walkers, and triers in life, so when Jean ann from The Dunedin Chapter set up a virtual walk for charity I decided to take part. This little piggy is donating money and taking part in the NC500 Virtual walk.

The idea is members of our chapter can register to take part in the event, we walk on our own, walk as little or as much as we want and are able. Basically it is a virtual north coast 500. We take note of our mileage, pay £1 for each mile walked. Someone like my sister, Hazel who has registered is very fit, walks many miles per week, she will clock in the miles. I’m proud of my sister she will do well. As my hubby Steve, he walks many miles in a day, he thinks nothing of walking 8 miles. Me, I love walking, its just a struggle. Imagine carrying a rucksack on your back filled with sand, you are walking up a steady incline and it gradually gets steeper and you begin to feel the strain. This is many a day for me. You can feel your heart beating and the thumping in your ears is getting louder. The beads of sweat appear on your forehead and you know its time to take a breather. Its all about pacing oneself and knowing my limits.

I have my sidekick most of the time. Buddy the fox red Labrador. He knows when the nets/carcinoid syndrome are playing up. He is clever enough to work out when the blood sugar is dropping below 3, or when my heart rate is beating too fast or going so slow it needs some intervention. He is my knight in shining armour. Buddy and our other Labrador Bella will be walking with me.

Buddy and me

Dunedin Chapter do a lot for charity, as members we raise a lot of money for charity throughout the year. This walk will raise money and it will go in the charity pot. Me personally, as well as doing the walk, I will put £1 in every day until the end of the event. I intend to walk 1 mile every day. There are 50 days left, which means I will put £50 in. My reasoning we have been given the privilege of one year free membership to Dunedin, so this is my contribution, giving £50 to the charity pot.

I got a delightful message from a Dunedin member and friend Scott Anderson. Scott and his wife Shirley, both members, both ride Harleys. The message asked how I am and noted that I am doing the virtual walk and they would like to sponsor me. They said the reason they chose me is because they have absolute respect for me doing it and they know that it will be a huge effort for me.

When I read this I could have cried. We have only known Scott and Shirley this riding season, but already they have become firm friends. You know when you get that feeling about folk.

Buddy in training

Sometimes we choose to sit on our bums and complain, do nothing with our lives. I prefer, the hard life, the trying. That thought when I’m out doing something and I need to stop for a rest and I think why the hell am I putting myself through this, oh yes that great feeling of reward and friendship.

Life is a journey; mine is wonderful folks; be all you can be xx

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.

Leaking gastrostomy tube

Lavita has been my lifesaver. For those who don’t know Lavita is the name of my gastrostomy feeding tube. Artificial feeding is a way of life for me; feeding tubes, syringes, dressings, huge deliveries of feed by my lovely drivers from Nutricia, etc. For the last few months I have been having a bother with my tube, my nurses have been coming in, giving the usual service, changing water in balloon, etc. However, I have had a lot of leakage (losing water from my balloon ) I have been in an awful lot of pain and three times the balloon has burst. Lavita has been a leaking gastrostomy tube.

Last week I went for a ct scan with contrast at the request of my net consultant. He is worried because my 5hiaa is elevated, I’ve lost weight, been getting a fair few infections and I haven’t been feeling well at all.

This week I have been at the hospital to see one of my consultants. He was able to speak to me about my ct scan and finally shed light on why I have been loosing water every week. And perhaps why I have been in so much pain. He asked me to get onto the couch, he Kindly helped me up, he assisted me off with my shoes, I couldn’t bend down comfortably from the couch and get my shoes off, he could see that so bent down and took my shoes off for me.

I lay flat on the couch and he said Mark requested the CT scan for a totally different reason the problem we are going to discuss and he started to explain what the radiologist reported on the CT scan. The report stated the balloon should be sitting in my stomach, however it is sitting in my jejunum. The doctor decided he would reposition it there and then. Are you ok? he said, I nodded, my tummy was aching. Just breathe in he said to me, and I will get this adjusted and make you more comfortable. He gave a very firm tug on the tube and turned it around, he pushed it into place and gently twisted it round. He pulled the disc tight up to my skin and said the tube needed to be at 4cm. And to check and adjust it several times per day. He is hoping now that he has pulled the balloon back up into my stomach that I won’t leak water any where as much as I have been. Some weeks, my nurse puts 20mls of water in when it comes to the water change there is only 7mls of water in the balloon.

My gastrostomy balloon had fallen into my jejunum.

I got myself decent, he helped me off the couch and onto the chair beside his desk. We now had time to discus what he did, how my gastrostomy tube looked on the scan and how I was feeling. How am I feeling? rubbish, hope to feel better soon….. My doctor did me a drawing of how the tube should be and how mine was when I got the scan. He told me I should get blood tests today; the nurses with a bit of a fight took my blood.

Today I got an email from my other consultant; my net specialist. The one that ordered the CT Scan. He said he was shocked when he read the report that my balloon of my gastrostomy tube was in my jejunum. He asked how I was feeling and said he was relieved that I had seen my other consultant Alan and that he had repositioned it. The prof said he is hoping that the leakage will slow down now that I have had my tube pulled up.

I feel privileged to have very caring consultants that look after me so well. Especially take time to email me out of hours, or give me a call and ask how I am. Thats what I call service.

The Drawing by my consultant

Felt like a teenager

Last Thursday after a horrid infection to blow the cobwebs away I went out with my Hubby and mates from The Dunedin Chapter Two Palaces and a Castle. You can find out about The Dunedin Chapter at Dunedin When we left Linlithgow we drove home a different route and lets say it didn’t go as smoothly as getting there; not that I minded mind you, looking back I Felt like a teenager.

Steve & I on The Fatboy

As we left Linlithgow we headed along the B9080 and made our way for Winchburgh, my the little place is growing. New houses popping up. As we were approaching Winchburgh I snuggled into Steve and rubbed his leg we drove passed beautiful newly built houses on a very dusty road. Steve slows down, realises he had gone too far and should have veered to the right at the new houses. All ten bikes turn round and head in the right direction………we make our way for Kirkliston. Lovely smooth drive till we get to the lights. Look up, familiar yellow sign with a black square, diversion, the road on the right was closed and we had to turn left. Making our journey longer. We headed down toward Queensferry. Then followed on till we got down to the A90. Where on earth did all the traffic come from?

The traffic queuing to go to Edinburgh was heavy. Steve took the lead with the others behind him. I stretched my head to the side in front of us was a trail of cars, vans, and lorries for as far as the eye could see. As we sat breathing in the fumes, listening to music from the cars, watching frustrated faces on the drivers of the four wheels I saw Stuart glide past us like a beautiful bird carefully weaving through the traffic. Next Colin manoeuvres and drives down the middle of the two rows of stationary vehicles and then in formation all us Harleys follow on. As Steve and I weave through the traffic I have amazing memories of being 17 and on the back of a sports bike, feeling the need to draw my knees in at every opportunity. I turned my head to the side and saw a young chap in a fiat 500 look at us, he smiled and waved. I lifted my hand and waved back, he had that look of envy. Sitting on the back of a bike, driving up the middle of two lanes of congested traffic; wow what a feeling. For some scary, for me utter bliss, I love it. I live in the country, our road is a single track road, not a cat eye in sight. No street lights, no orange glow of the city. And thats how we like to live. But the drama of feeling that you need to pull your knees in to pass a car, feel the rumble of the big trucks as you fly pass them. Made the traffic jam worth every moment.

Sitting in the traffic most certainly this day was better to be on 2 wheels that in 4.

If you want to give riding a motorcycle a go. Why not visit these pages. And then pop down to the shops and have a look and a chat. Ive been on bikes since I was 3. Honestly they are great fun and you meet wonderful folk and see fabulous places.

https://www.twowheels.co.uk/pages/learn-to-ride/motorcycle-training.htm

https://www.saltiremotorcycles.com/rider-training-edinburgh/

If you fancy a Harley Davidson. Look no further than your Scottish dealerships.

https://www.edinburghharley-davidson.co.uk

https://www.westcoastharley.com

A Glimpse of the Harley Davidsons that were on the trip

Two Palaces and a Castle

Well these last couple of weeks haven’t been the best. Yes the restrictions on lockdown are gradually easing and we are getting to meet up with others, most folks are being careful and abiding by covid regulations. For example, wearing face masks in shops, keeping a safe distance from others, washing hands, carrying hand sanitiser. I’ve not been feeling on top of the world. My nurse has been coming in and she has got to know me pretty well. One look at me and she knew there was something wrong. Two months ago I had the burst balloon in my gastrostomy tube and I felt that I hadn’t really gotten over it, the entire tube has been changed twice due to problems of it bursting in my tummy and extreme pain.

Last Wednesday I just wasn’t feeling good at all. Evelyn my district nurse came in to service my tube. She looked at me. Elizabeth she said, You are looking a shade of grey. How are you feeling? I pathetically winced and answered her back, Oh my, I feel absolutely shocking. In fact I feel like I have been kicked in the tummy by a horse. My solar plexus area was excruciating, everything and anything was an effort, to do the simplest task took maximum effort. Evelyn got down to business and attended to my tube. She could see that I was experiencing a lot of discharge from my stoma site. Time to change your tube again early…………

And so down to business instantly. Oh my goodness it was absolute agony, I could feel the saliva run down my gums, feel chest palpations banging in my ears; throb throb throb. The perspiration beads running down my head, I could feel my hair getting wetter. Finally the tube pulled out. It was gunky. Changed for another size 18 French tube. The gunky tube sent to the lab at the hospital. Skin covered with creams etc. Dressing on. In the afternoon the phone rang, it was the doctor, asking how I was, I told her how awful I felt. Antibiotics were prescribed. I need to get either IV antibiotic or antibiotics that get put into a syringe and put in my peg. I got a sledgehammer set of antibiotics and told to double my hydrocortisone replacement therapy. This medication for one week.

Following Wednesday I get my tube dressed and my octreotide injection; my two weekly expensive injection in the bottom. Not feeling on top of the world but feeling much better than last Wednesday.

Thursday my NET specialist telephoned me. We discussed how I’ve been. Long and short I’ve to get a CT scan and an echocardiogram. He is concerned since my last results were in the high region.

To blow the cobwebs away on Thursday evening I had a lovely trip as a pillion passenger on my husbands Harley Davidson Fat Boy Lo with some of our friends from The Dunedin Chapter. https://www.dunedinhog.com My hubby organised the mates run. It was a great wee run for a mid week trip in the evening – Two Palaces and a Castle.

Meeting up at The Gates of Holyrood Palace

We met at Holyrood Palace in Edinburgh. https://www.royal.uk/royal-residences-palace-holyroodhouse Holyrood Palace is situated at the bottom of the Royal Mile with a beautiful view of Arthurs Seat. It is the official residence of The British monarch in Scotland. The drive through the park towards the palace was beautiful. Arthurs seat the extinct volcano makes a stunning backdrop for many photograph. The loch has swans and ducks is attended by lots of keen visitors. Many folks choose to jog around the park and I can see why they want to run on this lush green grass. We wait at the gates of the Palace until all friends get together. Once we are all on board. Steve talks to everyone and lets them know what the route will be. Next stop will be……

Our capital city: we had a beautiful drive up through the park, round by the commonwealth pool and through some sights of the city. As we drove along George IV Bridge we passed Grey Friars Bobby, we turned left at the lights and up The Royal Mile. All ten harley davidson motrocycles drove carefully over the cobbled streets of Edinburgh and into the entrance of Edinburgh Castle. The sun was shining, the roar of ten bikes exhausts; music to my ears. As we drove through the entrance you could hear the vroom vroom echo. There were people up the castle enjoying the views over Edinburgh, as we entered they turned their heads and watch us come in. By the look on their faces you could see this was not an everyday occurrence for most of them.

After a stunning view of auld reekie from the castle and a quick presentation of a very small cake (one that fits in the day pannier of the Harley Davidson) to Hazel to say Happy 60th lockdown Birthday sister. We were on our travels again. We were heading to our destination. Fifteen miles west of Edinburgh, we were heading to Linlithgow. We took our way through the town, down the Mound, along Queen Street. Along Davidsons Mains heading to Barnton, on the outskirts of the city approaching the beautiful view of the forth. We took the A904 from Queensferry to Linlithgow. We found an excellent place to park. I sat at the benches and had a lovely chat with my friend Colin, whilst most walked down to an excellent fish and chip shop and got some tasty fish and chips; on location between Edinburgh and Glasgow the evening meal came with a choice of salt and sauce or salt and vinegar. Great food was had by all.

Found A Great Place To Park The Bikes And Rest In Linlithgow

You can look up Linlithgow Palace at https://www.historicenvironment.scot/visit-a-place/places/linlithgow-palace/

https://www.thecastlesofscotland.co.uk/the-best-castles/magnificent-ruins/linlithgow-palace/

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

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