The clock has sprung forward; the one time when we don’t mind losing the hour’s sleep through the night. The spring lambs are running around joyfully in the fields and the yellow daffodils dancing in the March winds a welcoming sight even on the coolest of days. This coming weekend is Easter. Will the Easter Bunny leave an egg in our house?
I am looking forward to the month of April and hoping the temperature will increase; after purchasing a small amount of seeds and plants I am eager to get more in the pipeline. There are some beautiful violas now in the hanging basket at the front door, ready to give visitors a colourful greeting. Alexandra and I planted some sunflower seeds, my 7 year old granddaughter’s delight when the first plant poked a little green sprig through the compost was priceless. If I could bottle her excitement when she called on me on Monday morning I’m sure I would make an awful lot of people feel very happy when they heard or saw this; best medicine in the world – being together, happiness and love.
Have a wonderful Easter. If you can, keep that frown upside down and smile each and every day.
It’s the beginning of 2023 and what better time to tackle something. Push myself through the barriers and spend quality time with my precious beloved beautiful Labrador Bella. Doddie Aid is back and I’m walking with Bella to help raise awareness of Motor Neuron Disease (MND). This amazing event not only raises awareness, gets everyone together, helps encourage exercise; no matter if you can take a couple of steps or run a marathon you can get involved. You certainly don’t feel excluded. Doddie Aid 2023 raises much needed funds for My name’5 Doddie Foundation which invests in research to find treatment for MND.
In the year of 2017 the gentle Scottish giant Doddie Weir told the world he was living with MND. Being the person he was he wanted to raise awareness, educate others and help find a cure for this disease.
Doddie may no longer be physically present on this earth. However he will always be in our hearts. The work he started will carry on in many others. You only have to look at the photographs and film footage to see what joy and hope his presence brought amongst others. The look on faces full of grit and determination.
Doddie Weir you were a strong courageous man. I will be taking part in this 6 week event with privilege. Now that Doddie Aid is back I will be walking with Bella rain, hail or shine. Fingers crossed we will clock up some miles for Team Edinburgh.
Today is Net Cancer Day. November 10th is the annual awareness day for Net Cancer. So many people wait for a long time for a diagnosis. Go back and forth to their doctors with symptoms and get told it is irritable bowel or something else other than the actual cancer. When Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common—and potentially more likely—diagnosis. Net Cancer and Carcinoid Syndrome is rare hence not the first thing the doctor looks for. Awareness needs to be raised for this cancer. Today is NET Cancer Day and the hope that the message gets around the world – raising awareness of this cancer.
I have been living life quietly over the last 3 years. However what I did promise myself after the diagnosis of carcinoid syndrome – was that I would try my best to keep busy, as long as I was able do as much as possible. Knowing it was a case of managing symptoms rather than curing them my life philosophy is make the best of it. October has been a month of trips, seeing people and reflection. I have most definitely had a busy October.
Most of the readers will know my husband has a Harley-Davidson motorcycle. We are members of The Dunedin Chapter. Steve enjoys going out on runs, when I am up to it I accompany him. There is a social side too, this October we had a lovely night away in a hotel and saw friends of the club at The End of Season Bash. Sadly on the same weekend we attended a funeral.
The funeral of someone we know that has had a heart condition for a long time. New of a death never comes easy. Steve and I went to his ‘Celebration of his life’ service. It was most definitely him. If you can say a funeral was beautiful then this one was. From the drive up to the crematorium, in a lovely setting to his eulogy and the dancing and clapping to the music of The Entertainer was comforting.
I had a trip to Bristol mid October, was there to interview a family and staff at The Bristol Children’s hospital. I wrote an article on virtual reality for physiotherapy in children. You can see the article Here. I felt privileged to be involved. Also wrote a post in my Blog Spot
Found time to attend a wonderful Halloween party with grandchildren.
Today I am sitting with my beautiful labrador Bella. Tonight I will be a couch potato and watch Celebrity in The Jungle on TV.
The summer has been fairly kind to bikers this 2022 in Scotland. A great many dry sunny days and even on the cloudier days the sun has made an appearance on several occasions. For many friends they have been attending bike rallies, going off on super runs. No matter if it is long or short just the getting out for a while whether it is with a group of mates or a solo run. That feeling of freedom with not a care in the world and to cap it all the fabulous scenery that our country has to offer is most definitely worth taking to the road for. However I have had a medical issue with my gastrostomy tube and wasn’t feeling too great at the start of the season. Not like me at all but I welcomed my regular visit to one of my consultants. We had a long chat and it was decided I would get my lifesaving rig removed and a further procedure performed in hospital. Once this is done hoping I will be back on the Harley-Davidson® in no time.
True to his word I faced 13 medical professionals in the operating theatre just short of 4 weeks later. Getting the new tube fitted was most definitely daunting. The staff that look after me are absolutely amazing and when my heart rate dropped extremely low that the alarms were ringing they all remained so calm. Quietly I could here the radiologist say Elizabeth’s lips and feet are a lovely shade of blue. A nurse came and held my hand reassuringly and gently put a foil blanket over, ‘you are a tad cold’ she said and then continued to massage my feet. Once it was over and I was back sitting up and eager to go home one of the nurses that worked in London introduced me to a fabulous new dressing for around my tube. She gave me a pretty floral one and told me I could purchase them online. They are called G-tube dressings and are washable. Fabulous.
I got the talk about taking this easy when I got home. I so have to admit I never anticipated how long it would take for me to feel like ME. But what I can say is 4 weeks after normality started to set in. Since I have had it done I’ve enjoyed riding pillion three times;l. Gosh the relief I can have my feed running and it isn’t leaking out of me. Or more importantly the balloon can no longer explode inside my tummy. What a relief. I enjoy plenty of relaxation time; meditation and wellbeing top of the list. And of course a lot of reading snuggled into my beautiful labradors. As well as picking up a book and sifting through the pages which I so enjoy I enjoyed many books on Audible – Amazon do super deals including the first three months for 99p. This is one of the best and most used subscriptions I have taken on. If you enjoy reading and audio books you will absolutely love Audible If you don’t have Amazon Prime, it is worth joining. I wouldn’t be without it. Orders delivered next day, music, videos, etc. Superb prices. Fabulous.
The runs are very different, the first was just Steve and I tottering around our own area on my birthday on the 6th of August. We enjoy touring the Glide a little East Lothian Route, starting and finishing in Pencaitland. Taking in East Saltoun, Gifford and Haddington. The second was a ride to Stirling to meet up with some members from The Dunedin Chapter. A quick hop on the A1; stopped at Elginhaugh to meet up with Deke and then onto the bypass, joined and rode up the M9. A natter with fellow bikers and then back home. And finally a third run to Gullane to return granddaughters school bags.
The runs were enjoyable, the first most certainly very scenic and enjoyable for pillion view. Riding along single lane country roads – so easy on the eye. Chocolate box houses, overhung trees, lambs running in the fields. However on the ride to Stirling the smooth run up the dual carriageway of the A1 with the forth to my right. A perfect clear view of fife and the only distraction was the crops in the fields as they swayed gracefully and rhythmically as if they were dancing in time. The Sunday run to Gullane was a beautiful one. Living in East Lothian it is easy to take for granted such beauty; riding through the championship golf course I watch the golfers enjoy their activities and then take in the quality and beauty of the course. The greens looking in super shape. The course comprises of many shades of green and I think of my parents and the discussion we had many years ago as we looked at a globe and as a child I asked what is Gods colour Blue or Green.
These runs are in preparation to go to Aviemore with Steve. This year in Aviemore we will see many people with motorcycles, especially Harley-Davidsons® It will be lovely to go into the hive of activity. I never once thought when I was up in Aviemore every other week skiing, climbing and endlessly hill walking over a duration of many years would I be a granny riding pillion on a Harley-Davidson®.
I have been looking at books – quite fancy treating us to this one; Britain for Bikers
August was always a month of celebration, I was born on the 6th of the month in 1966 and married on the 22nd in 1986. However when my fabulous Mother died on the 9th of August in 2013 I felt like the life had been sucked out of me. And most certainly did not feel like celebrating. As the years have ticked on I have found I miss her more each day. The telephone rings first thing in the morning and I still expect it to be my Ma. My heart aches, I yearn to sit and chat and share a story or two like we always did. There is so much I want to tell her and the best place to do this is having a blether and a walk in the sunshine.
On Saturday I took a walk in the sunshine. I walked 100 yards from our house in the beautiful sunshine. Walked my Labrador Bella up the garden and let her run free in the field. I admired the beautiful field of everlasting flowers. I sat in the field looked at the stunning carpet of purple. Dancing were several rogue vibrant red poppies. Swaying back and forth, on looking at them if one had a vivid imagination such as mine they look like they are chatting on the dance floor. As I sat I thought of Mum, she would never want me to be sad. Think happy thoughts she would say. Smile and the world smiles with you. On the last day of her life she said to me I will never leave you and I believe her. I still feel her love.
I also feel her love through my beautiful grandchildren. They are very happy loving funny children. Our grandchildren most certainly keep me going and help me all my daily battle. I can now understand how my mother fought so hard when she was diagnosed with lung cancer and struggled on even in the darkest days. The shrieking laughter, the fingerprints on the glass cabinets they leave behind. The little stories they read to you are such a tonic.
I enjoy most of my time with my amazing labradors, very rarely there isn’t a dog at my feet. Bella was on the walk with me on Saturday. We look after our dogs and make sure they get well fed and appropriate supplements. One such supplement is Premium Omega Oil Capsules. You can buy them from Amazon and get them delivered straight to your door. I give both my labradors these super supplements. It comes in an easy to use pump and keeps their skin and coat in great condition. Buddy and Bella love the taste so its so easy to give.
There are many days I am shattered. Would I have life any other way? No not at all.
Have a grand day everyone. And thanks ever so much for taking the time to read this short blog post.
Our house is usually always full of chatter. We have the uncanny skill of speaking and listening at the same time. Grandchildren and labradors bring much needed laughter. They are my essential sunshine on a rainy day. Most definitely turn my frown upside down and oh yes help me smile each and every day. I can always say what great fun granddaughter’s can bring.
If you were to add the age up of the three of them you only reach the ripe old age of nearly 12. Firstly there is Alexandra. She is the eldest at just turned 6, Ellie comes second at 5 years of age and Luna will be 2 at the end of the month. The girls all play so well together, shrieking up and down our hall. Running around the garden. Playing with the garden toys or walking the labradors in the back field together with me, all of us singing and chatting away. The last time the girls were playing together they went to Vogrie Country Park and what fun they had.
Individually they all like to come play at ours too, get some grandparent time. Bake cakes, do some arts and crafts, play games, garden with Granny, clean the Harley-Davidson with Papa and they most certainly love getting in the Wetroom and having a long shower, playing water games, singing at the top of their voices. We all love to go walking with Buddy and Bella my Labrador retrievers. Our back field is ideal, a wonderful safe environment for both dogs and children. Or go to unleashed Dog Park at Pencaitland and enjoy some fun.
It can be the darkest day, you could feel at your lowest ebb and these little cherubs will cheer you up no end. Melt your heart on the coldest day and yes oh yes they can all talk. Proper little chatterboxes.
This Easter weekend was particularly lovely. Alexandra helped Granny put some stickers on the window. Girls helping Papa with the ride on mower. Then oh so much fun hunting for some eggs.
Undoubtedly grandchildren fill a hole in your heart you did not know existed. For this reason I would recommend them to anyone.
Life for everyone can be challenging. We all find the hum drum of daily living difficult at some point in our lives. When I was studying at university right out of high school gosh I thought life was difficult, when in fact it was actually pretty easy and straightforward. A lot of water has gone under the bridge since then my goodness. I’m married, have children, grandchildren, have enjoyed happy times, went through some sad experiences, proudly gained my PhD, and most definitely feel loved. I feel I was brought up fairly well and I have a glass full attitude to life and always try and look on the bright side. On meeting someone for the first time I treat them as a genius and work backwards and always have a “book and cover policy” – you never know what goes on behind closed doors or what is hiding behind that lovely smile. Although I am fairly level headed human and like the lion I am feel I can deal with anything, nothing prepared me for the day I went into the consultation room to be told I had carcinoid syndrome and it was incurable. Am I angry at the carcinoid syndrome diagnosis?
When I heard the words incurable, I first felt like I hit a brick wall. My stomach churned, after a few moments of the conversation with the consultant that day the remainIng words were not communicating with my ears and the journey home was a blur. But as time went on, getting medical treatments, ongoing management of my incurable condition. Surgery to get a gastrostomy feed. I decided to use my writing to promote awareness of Net cancer and carcinoid syndrome. I find writing helps me get through the day, it helps me relax, encourages me to take photographs, I read about other subjects. All in all, my mind gets flooded with new information and I totally enjoy being creative looking at life from a different angle. I found a way to deal with my illness. At first yes I felt rather upset and confused now I am not annoyed or angry at all. I believe getting a diagnosis has given me the coping mechanism; it has made me the person I am today. I have learnt what is important, especially things like keeping in touch with people, showing emotion and saying I love you.
Nearing the end of March and we have sprung forward for daylight saving. Lost an hour in our bed did that cause any upset. Gosh no, woke up to a beautiful sunny Sunday morning, the fresh dew glistening on the blades of grass as I drew back the curtains. Six year old granddaughter Alexandra was getting her breakfast then off to dance. She attends a dance class every Sunday which she absolutely loves. For later in the day when she was back at ours it was arranged that we would go out on an adventure. This would include a drive to a Forrest Park and then there would be Frogs, nest building and watching by the pond.
My sister Hazel and her Granddaughter Lily came to mine and picked up Alexandra and me. We travelled the scenic route from our home in Boggs Holdings, Pencaitland to Glentress, Peebles in The Scottish Borders. We headed along familiar roads, up the granite hills, driving up the hills straight through the golf course in Innerleithen. Looking out the window at sheep and their newly born lambs dancing around the bushes.
As we approached the Glentress Centre we drove through the well sign posted road to the upper car park. Got out the car. And went on an adventure. Tummy’s were rumbling, so first of all it was time to feed the girls at Glentress Peel Cafe – this was a super place to have something to eat. Catering for all, adults, children, decent enough vegetarian option and dog friendly. Beautiful outlook with a pond just outside.
The pond was a great attraction. Alexandra and Lily excitedly watched the frogs swimming. Eagerly took in all the pond had to offer including frog spawn, insects galore and many plants. I have to admit I was in my element sitting on the bank watching and taking photographs.
We took the steady incline back up to the car park. The girls ran around laughing and playing catch. Alexandra collected a fairly large stone, the girls went on in search for moss and they started nest building. The Ranger walked by and smiled. A few minutes later she came back, as we were sitting at the picnic table she presented the girls with activity sheets and coloured pencils. She said well done on their nest building.
As the girls sat and drew pictures and coloured in I took in the breathtaking view. Watched some mountain bikers. And looked out onto the hills with the Glentress Forest Lodges that are available to rent. With the thought that one weekend that would be a lovely stay for a night or three.
All in all what a great way to spend a few hours on a Sunday.
How on earth did that happen? Where has time gone? My shining light, dependable caring compassionate granddaughter is a whole six years old. Wow! Alexandra is a crazy funny girl who makes me laugh and always has my back. Chattering away playing at ours, rattling the keys on the keyboard together with me as I write she is the most wonderful company. Since she turned 6 months old she has been coming to our place, for an afternoon, then an overnight, now its for whenever the need is there or she wants to come and stay. Our home is her home just as it should be for grandchildren. On her birthday she came to ours in the afternoon to blow out her candles on her birthday cake – let us celebrate because our beautiful box troll has turned six.
As a family we enjoy spending time together. At our home, it may involve cutting the grass on the lawn tractor. Going on holiday together, or to an event. Out for a walk with the dogs – my precious labradors. And most definitely celebrating a birthday like this one. It doesn’t have to be a big affair, just who matters sitting on the sofa singing happy birthday. It’s been a funny old time especially for a child of late with the pandemic, isolation and face masks, no birthday parties. However the most important thing has never left – love. Knowing that we are loved we can get through anything.
Our 6 year old sunshine girl Alexandra turned 6 – my I blinked my eye and she has grown……….
It’s Monday morning like no other for most people. As I look out of my south facing cottage window I see grey clouds circling above the Lammermuir hills, on first glance its a bleak outlook. My telephone rings and anyone that knows me will guess that I am then preoccupied for at least an hour. Back to what I enjoy; I greedily set up my three apple devices with devoted labradors at my feet. As I lift my head to pick up a book I looked out of my ‘favourite view’ window. Was that a glimmer of sunshine trying to get through? As Bob Hope once said about Scotland it’s the only country he ever came to where he experienced 4 seasons not just in one day but in one hour. My yes, it was the clouds had lightened and the sun was beginning to show face. What looked like was going to be a rainy cold blustery day was turning out to be a fine day, perhaps not the best however one with promise and prospects, what more can you ask. Today is Monday 28th February 2022, today is Rare Disease Day.
I like to believe that the future for Rare Disease is parallel to today’s weather. One with good prospects and promise with a ray of sunshine to keep that frown upside down and remind us to smile each and everyday.
Living with a rare disease for most affects not only the person with the disease but those around them, whether they are family, friends or work colleagues. On getting a diagnosis, for many it is a life changing situation. Living with or getting diagnosed can be extremely hard to live with; physically, emotionally and financially. Some only get a very short life span. Others have many years of life and have to learn to manage. One big thing in common is many rare diseases are chronic. It isn’t always easy admitting you find life a struggle. However there are charities, hospital groups, clubs, various volunteer groups, etc and great deal of people affected benefit from support organisations; someone to talk to, somewhere that really understands, respite, etc, etc.
So what is a rare disease? 1 in 17 of us world wide will be affected by a rare disease at some time in our life. Carcinoid Syndrome is one of them. Huntington’s Disease,is a rare disease another is Cystic Fibrosis. The majority of rare diseases are chronic, progressive and genetic not curable. Only manageable to an extent. Living with a rare disease can feel very isolating and scary. Globally between 3.5% and 5.9% of the world population is affected with a rare disease. There are six thousand different diseases affecting 300 million people. In the UK, it is estimated that there are 3.5 million people affected by a rare disease.
Many patients with rare disease’s consult with more than one specialist. Often as many as five. Going to various outpatient clinics can take its toll not only on the patient but on the people around. The care at the hospital in the UK is free yes, however the patient has to get to the hospital for treatment, blood tests, scans, etc. Fuel in transport, or cost of public transport, the cost of eating out, etc etc. Then there is the physical cost to the patient. I was speaking with a consultant the other day and she spoke rather concerned that one of her young patients said she had 52 clinic appointments in the year. Equating to one per week. Yes she has an incurable rare disease, however she is also a student, desperate to pass her exams. The doctor sounded genuinely concerned for her patient; saying she thought this could affect the patient’s wellbeing on top of their condition.
What is Rare Disease Day? This is a world wide event for one day – always the last day in February. Celebrating Rare Disease’s. Promoting awareness. Sharing videos and experiences across the world. The aim of the day is to raise awareness, spread hope and solidarity and bring the worldwide community together. Hoping to improve access to treatment and medical representation for people and those affected with rare diseases.
It is go good to see so many people pull together for such an event globally. When these people are at home feeling isolated or trying to go out and are anxious they need to get their “big person” pants on. Life can be so difficult and cruel. It’s heartening to see so many people affected by rare diseases with glass half full attitudes. Medical staff fully behind them and organisations supporting in what needs done. Let’s hope for the day that we can get some treatment and you never know maybe even a cure for some of the diseases. However, for now let us manage the best we can.
My first memory of London; I am 11 years of age and in London with my Mum and Dad, we are passing a lamppost with ER printed on. Dad says “Biscuits look at that Elizabeth Reigns, you work hard sweetheart and you can be a boss too” My folks always gave me the encouragement and love needed to go forward in life. They helped me feel safe and secure. In 2012 I took the train with my hubby to London, this time not for a holiday but to see the expert Professor Caplin at The Royal Free. Despite needing diagnostic tests and treatment for incurable stage 4 neuroendocrine cancer and carcinoid syndrome Steve and I found time to explore new avenues. See museums, art galleries, The Tower, take in a show. One thing I am most certain of London, the city that keeps me alive more ways than one is my most favourite city.
Since 2012 I have been and continue to travel up and down the train tracks between Edinburgh and London. Had countless appointments with the Prof, attending clinics, grateful for but not particularly enjoying gallium pet scans, various treatments, glowing like the Readybrek kid, setting of alarms here there and everywhere, and many many blood samples on ice and some taken in special light conditions and immediately put in a Black bag. So tired that when I escape from the delightful cancer team we go to the West End show – We Will Rock You. A musical I have wanted to see for some time, the first half I sit, smile and sing along, the second I sleep right through, with the audience loving the show, singing at the top of their voices. The staff at the UCL Hospital and The Royal Free in London have been outstanding and for that I thank them from the bottom of my heart.
The last year we have had a year of corona, crisis and challenges. But let us not forget that the breakthrough of the vaccine has allowed us to start to come out of lockdown and find some sort of normality, try our best to get back to work, start socialising and enjoy life.
Steve and I in London with the Fatboy
July 2021 we decided not to go to London tandem but to go with my sister Hazel and her husband Alan. The boys rode the Harley-Davidson® motorcycles down and Hazel and I took the train first class from Edinburgh to London Kings Cross. I have always wanted to ride pillion over Tower Bridge. As well as having a fabulous 4 days Finally got my wish. Riding over Tower Bridge was as good as I expected, it was very busy, both lanes used, cyclists going as fast as us. Beautiful red double deckers travelling along with smiling faces looking over the Thames. Black cabs going no where fast. All of us sitting in the two lanes travelling along at 10 miles per hour, superb for me as a pillion taking in the view, people watching, loving the sights. Gathering my thoughts.
We crammed in what we wanted to do, Steve and I have done lots before including The Tower, The British Museum, various parks and lots more. This trip was to be relaxing, however there were a few places we wanted to tick the boxes. Namely Ace Cafe, The Bike Shed and Warrs Harley-Davidson®
Alan and Hazel
very popular arrival at Ace Cafe
Inside Ace Cafe
A selfie at Ace Cafe
Friday morning we gathered our bearings had a doddle around on foot, enjoyed some squares such as Russell and Tavistock Square, walked through St James’s Park, had lunch at The Hard Rock Cafe, Picaddily Circus, saw some of the sights on foot and then took a taxi back to the hotel looking forward to Friday night on the bikes.
We teamed up with our Sena Communication kits and rode the Harley’s up to Ace Cafe on Friday night. Friday night is bike night. Oh boy what a fabulous evening it was. There were car park Marshalls when we arrived, 20 minutes later I could see why. The entire car park was full of bikes. I’ve got to say anyone we spoke to was so welcoming and friendly. We first off hooked up with 4 young lads with Harleys. They don’t belong any Chapter, just friends riding their bikes. Went into the cafe for a cola and a scout around the shop. Came out and if possible it was busier than before. A familiar Harley fist bump came my way from Gerry; a member of The III Rivers Chapter, there were two members together, they welcomed us into their abode; great guys. Looking out onto the road there were motorcyclists doing wheelies up and down the road, burning tyres. Revving their engines, screaming up and down. So loud, vibrant and exciting. Gosh it makes a girl’s heart fair beat. One of the highlights of the evening was the calm Great Dane in the sidecar, sitting watching all going on taking in everything. What an unforgettable night.
Saturday we took the bikes for a tour of London, did what I’ve always wanted and rode over Tower Bridge, drove through Marble Arch, passed St James Park, Covent Garden. We followed our Harley-Davidson® noses to London’s Dealership Warrs. The Dealership is fabulous, as well as great bikes, superb range of accessories and clothing, they have a museum including Evel Kineval’s bike. Not to mention their very helpful outstanding staff; Holly and Edwardo. They sponsor the HOG Chapter Chelsea and Fulham. We met a lovely Chelsea and Fulham Chapter member at Warrs : Steve. He came with us for a tourist ride round London. Then the five of us went to the amazing Bike Shed, terrific experience from start to finish. As we arrived we were shown where to park, the great think is you can ride the bikes right in and ride passed tables as folks have a drink. Undercover safe parking, so secure you can leave your helmet on the seat of your bike. The staff warmly greeted us, we were an hour early, she asked if we could be fitted in would be like an earlier table – hell yes! We toddled the dozen steps to the shop, treated ourselves to a t shirt and some patches for our cuts, had a good look round, amazing bikes. There is a barber shop too. Our table was ready and the food did not disappoint.
As always I enjoyed my time in the big city. Our final evening after packing and getting organised we ventured round to quiet Bloomsbury for a cocktail.
smile each and every day 