Sponsoring a hearing dog

A couple of years ago when my granddaughter then 2 had her first playdate at our house with my very close friend, Danielle’s daughter, Ella both girls played and had fun like all toddlers do. However as young as Alexandra was at the time she was caring and compassionate enough to notice that Ella was different from her. Ella is deaf, she has cochlear implants. Little did I know this first playdate would lead to us Sponsoring a hearing dog.

The girls at that young age played in the sitting room with toys and formed a bond. Two years later they are running up and down my hall laughing and shouting with dolls in their hands. When Ella left with her mum and dad Alexandra asked me about Danielle and us being friends. I told her we have been friends for a very long time, and told her you look after each other no matter what when you are good friends. I told her Danielle sends me messages and phones me to ask how I am. She visits. We all have fun, and now brings Ella to come see her. We spoke about Ella’s deafness, she said it must be horrible not being able to hear everything all the time Granny I am so sad for her. I told her not to be sad and look at how happy Ella is with her family and when she plays at ours. I think this helped.

It was raining on a Saturday afternoon and Alexandra was visiting with her Dad. She likes to be like Granny and type a story on the laptop. I had been on social media just prior to her going to use my laptop. She takes a seat beside me, she patiently waits till I close my pages. On the timeline of my facebook page there was an advertisement for Hearing Dogs for Deaf People. Oh look Granny, a Labrador like yours, but its black, says Alexandra. This stops me in my tracks. I look at what she is noticing. I close the page and let her type away.


Alexandra checks the new puppy over


Later that evening I go on the site Hearing Dogs for Deaf People and sponsor the black Labrador Winnie. This money will go towards training the puppy and will help change a deaf person’s life.

The Box of Gifts for Sponsorship



Ella and Alexandra


Alexandra & Ella


Ella & Alexandra ready to go in the garden


Alexandra now has a beautiful little cuddly pup with the familiar maroon jacket on. As soon as she opened the box she looked at all the paperwork quickly, lovely photos Granny. She quickly takes out the cuddly dog, runs along the hall and comes back with a stethoscope we need to check this puppy over. She loves the idea of having a notebook book and pen, so like my Mother. The certificate and postcards are brilliant. Alexandra has already looked up the website and seen other photos of Winnie and progression videos, her out walking, etc. It’s fantastic. Helping the charity, putting a good dog to work and most importantly helping someone who needs it – match them up with a dog and giving them valuable lifelines at times, for example Winnie will alert her new owner if the smoke alarm is going off, if there is a sound coming from the baby monitor.


Alexandra in her scrubs


Puppy gets his jags

I know how much I value my labradors. My lad, Buddy knows when my cancer is misbehaving. When my blood sugar has dropped too low. If my heart rate is wonky. Carries my feed items. Bella the companion Labrador, she is a treat to have, carries clothes to washing machine. Carries items along our 40 foot hall. Some days it can be a long walk for me.

If you have ever thought about sponsoring a dog I can highly recommend it. As someone who depends on a dog I know how valuable they are. I also live with a hubby that has issues with his eyes. He has had 10 surgeries to his eyes for detachment to his retina. He really is extraordinary. He pushes himself. Tries hard, still works, has a wonderful vision in life.

Acts of kindness during Covid restrictions


Our new normal way of life can be difficult to live with at times, but we have to remember it is for our own good. People in various areas have different rules. Depending on where you live, what you do for a living and how your health is determines what you can and cannot do. What has made my life so much easier throughout this difficult period are Acts of kindness during Covid restrictions https://www.gov.uk/coronavirus

In the last few months I have sat back and read my social media pages, looked at what my ‘friends’ have written. Some posts have been entertaining and cheered me up, others have been sad and have made me grateful for what I have in my life.

Since the beginning of the restrictions I have been privileged to get thoughtful gifts, letters by post, flowers, texts, telephone calls, emails, FaceTime calls, etc. For this I would like to say thank you.

My most wonderful husband has been an ultimate star throughout. He has worked running his busy business as well as chasing after me, catering to any whim I may have. I try my best to be self sufficient, but I will admit I need by knight in shining armour to take charge in times of need. Steve has done such lovely cheer up things; my most favourite jeans started to get worse for wear, he sought out online not only a pair of my likeable Levi 501 in waist 23, but even managed to get the extra short leg – boy was I beaming. I’m always a freezing cold human bean – so delivered a pair of slippers wool slipper boots with a rubber soul from Denmark Oh my goodness my feet are so warm now.

My children, Tony and Stuart, their other halves and my grandchildren have been ultimate stars. Telephoning, FaceTime calls, texting, sending photos, etc. Nothing better than an excitable FaceTime call telling me all about their day. Love getting the progress news how the university is coming along. Getting texts saying morning Granny how are you? hope you have a good day, love you xxx. Make me feel so loved and warm inside. Video progression of the grandchildren makes me smile, sometimes laugh, always warms my heart and most definitely helps for not getting the visits like we used to.

Faithful Buddy

My sister Hazel sends me letters and cards by post. Its so lovely when I hear the postman drive up our chipped driveway, the crunch of the stone chips as he stops. He get out as usual and puts the mail through the door. Faithful Buddy goes with me to get whats arrived. I recognise my sisters writing, in the envelope is a card and some beautiful photographs of my grandchildren, myself, my lads, and my Dad. She tells me how much she misses coming to see me, our sisterly blethers on the sofa with the dogs at our feet. Some days thats just what we all need to hear. To know how much we are loved.

Cards from Hazel, flowers from Louise

Friday is chat with Jenny day. We met the first day at university and have been firm friends since. I so miss her coming over to visit at the moment with the restrictions being on a tighter leash at the moment. Fingers crossed they will change for the better and she will be able to visit soon. We could meet up outside, but for me its too cold. So for now, texting, whats app and Friday chat day will suffice.

I message and get messages from my sister, Helen and brothers Albert and Brian. We chat regularly keep each other up to date. So miss seeing my Daddy Bear.

One of the grand puppies


On top of the people already mentioned, there are an array of family and friends that have been supportive, giving me a phone, dropping a text, sending a message, etc, etc. Examples include My niece Lindsay sends me the most loving messages and photos of the children, love that girl right over our rainbow. Long time sister pal Liz and I talk on the phone and send each other messages. Sally, little toots from http://www.salspals.co.uk sends the most wonderful cheer up messages and photos of Harley boy. Louise messages me every day, love the photos of Gunner and Harris, received beautiful lilies the other day from her. I miss her popping in for a cuppa and us having a natter. Every morning I get a text message from minister friend Janice. We share other messages throughout the day and a couple of times per month we chat on the phone. Janice is inspirational and caring. Diane and Mark have been keeping me updated with stunning photos of Buddy and Bella’s grand puppies.

Social media is a great point of communication for any of us. Even if it’s just for 10 minutes looking down ones timeline to find out what’s going on in the outside world. I enjoy sharing information and have fun & banter with fellow members, from our Harley Davidson group at The Dunedin Chapter http://Www.dunedinhog.com. I have made great friends at the Chapter. Steve and I have missed out on going to bike events this year, however we are keeping up the chat with our buddies on Facebook I also get support from Scotland’s Net Cancer Charity, http://www.taect.scot for now they offer zoom meetings, online chat, quiz, Facebook page. I really miss seeing my pals, we text each other personally too and catch up on each other’s news. There really isn’t any need to be lonely if you are willing to work at it.

There was an act of kindness that touched my heart at the beginning of August that will stay with me forever. My nurse Evelyn that comes in to the house is an absolute trooper. All the nurses that come to the house are fabulous. My amazing nurses change my dressings, tend to my gastrostomy tube, give injections, flu jabs, my octreotide treatment. Health wise they do anything and everything. One day at the end of July when I was chatting to Evelyn I told her I thought I would look online and see if I could get a washable colourful cotton face mask. We blether about all sorts of things, sometimes it’s good to talk away from health, not about me, just about life, having some fun, ‘the doing things’ . The following week Evelyn came to our house. It was a Wednesday, full service day. Gastrostomy checked, balloon water changed, dressings changed, etc. And then a big beauty of a needle for my octreotide treatment. After everything was done and dusted. Evelyn lifted her jacket under it was a present. Beautifully wrapped and in a lovely little presentation bag. This is for you, she said as she handed me the bag. I eagerly looked in. The most delightful handmade cotton face masks. Matching children and adult ones. And ever so special to me zebra ones. What an absolutely thoughtful gift. Someone who is working full time in such a strained and stressful environment, in these difficult times. Taking time out to make the masks touched me. Made me feel very happy. They are useful, look great and I really like them.

My granddaughter Alex and me in masks made by Evelyn

Since March life has put on a different hat. We have had to learn a new normal. I’m a glass half full gal. I so appreciate the people in life that have made my life so much easier by the generous acts of kindness during Covid restrictions. Please remember when you are sitting on social media watching a video, or your feet up glued to a soap opera on Tv – think about dropping a mate a text, or give them a call just to say hi. Five minutes out of your day can make someone’s a really special one.


































































































































































































































































































































































































































































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.

A trip to Blackpool

The summer is fading fast and by now we have usually made many trips away. Including day jaunts on the Harley Davidson sightseeing, weekends with Dunedin Chapter http://www.dunedin.hog to Motorcycle Rallies, wonderful sun seeking holidays to our favourite island, Ibiza https://www.tui.co.uk/destinations/europe/spain/ibiza/holidays-ibiza.html

Since mid March this year we have been pretty much cooped up and adhering to all the covid rules and regulations. Steve has been fortunate and been able to work right through although life hasn’t always been easy, making sure maintaining a safe social and physical distance at all times. However getting materials is still difficult at times. Its the anniversary of my Mum’s death on 9th August and its my birthday on 6th August, and we got married on 22 August; it is lovely to do something nice. We usually go to Edinburgh Festival and go to Thunder in The Glen in Aviemore. Both cancelled this year due to covid.

What should we do? Steve took the bull by the horns. Once the hotels opened their doors to the paying public once more. He booked two family rooms at a town that we frequented with parents, children and grandparents. We were going for a trip to Blackpool. We were now going to introduce grandchildren to a place that had fond memories to us.

We decided to travel down with very mixed emotions. Our youngest granddaughter, only 4 months old was in ICU after open heart surgery. Also the worry of how safe life will be regarding COVID. The day before we left, my amazing nurse came in, serviced my gastrostomy tube, changed my dressing and administered my octreotide. Evelyn came bearing gifts, she had made face masks for the girls and me for our trip. Steve took Buddy and Bella to Sally at Sals Pals http://www.salspals.co.uk Knowing our babies will be well looked after when we are away.

Steve, Stuart, Alexandra, Grace and I clambered into the big red BMW – all set for our adventure before Grace starts back to primary 2 and Alexandra at nursery school. The journey down was grand, stopped once. As we approached Blackpool I could see The Tower in the distance. We played a game the first one to spot The Tower gets 10 points. The girls giggled, they were so excited. They both looked out of the window and called together, there it is and pointed in excitement. This made me extremely happy.


The Girls and me all set in the car for the journey 😘


we arrived at The Premiere Inn. https://www.premierinn.com/gb/en/hotels/england/lancashire/blackpool/blackpool-east-m55-jct4.

Premier Inn have got it right. Staff wearing masks or visors. Comfortable rooms were immaculate. Service with a smile. There was a restaurant attached, we booked to get a meal. There was hand sanitizer at the door entrance and everyone used it upon entry. We ordered our food using our mobile telephones and within 15 minutes hot tasty food was served to our table.

We went into Blackpool for the evening after our meal, we parked on the sea front. Made our way to The South Pier. On the pier there are plenty of rides to keep us amused. The girls eyes were like saucers, their heads bobbed from side to side taking in all they could see. The bright flashing lights, beeping sounds and clunking of coins rattling was their first sight and sounds of the pier. Lots of 2 penny machines to play, big glass boxes with cuddly toys to try and grab to win. We played some games, had amazing fun came out the other side to a funfair on the pier. Stuart, Alexandra and Grace had great fun on the rides. This was a taster for the big rides next day.



We had a great sleep, rooms comfortable, had a buffet all you can eat breakfast. Again, Hand sanitizers were offered. Tables clean. Physical distance maintained.

After breakfast we made our way to https://www.blackpoolpleasurebeach.com/

What a day we had. We had already booked our tickets online. When we arrived at the park, all staff had masks on. They maintained a very professional approach. We all went on the rides, and enjoyed them very much. Steve missed out on my mum’s favourite ride, the log flume – oh boy is he glad he did. When I got off I looked like I had fallen in a river. I was drenched. Certainly didn’t stop me enjoying it. Pretty sure the ride we all liked the best was The Wallace and Gromit Ride. It was so good we all went on it twice.


Blackpool has a lot more to offer than most people think. It’s not all kiss me quick hats, candy floss and Blackpool rock. Yes these are readily available and suckers like me, love hats, cannot resist the feel of cotton candy on my lips and so enjoy seeing the rock being made into different colours, shapes and flavours; the most beautiful looking baskets of fruit of rock. Blackpool is UK’s Las Vegas; bright lights, casinos and lots of puggies. What fun we had at Coral Island, playing the machines, collecting the tickets, saving them up in return for prizes at the end of the day. At the end of the excitement we remembered we had parked the car quite some way away. There was no way my legs were going to carry me. Bus, tram, taxi? We were going in style. We were going in a horse in Carriage, it was a princess ball covered trap pulled by a single horse. I was as excited as the girls. What a wonderful ride it was.

Our last day in Blackpool was my birthday. It was as if I had stepped back in time. The sun was shining, it was beautiful and warm and we were going to Stanley Park. This is somewhere that has the most amazing childhood memories. Feeding the birds with my parents and grandparents, walking in the stunning well kept gardens. Chasing my sister around on the large grassy areas. This day was no disappointment, we walked into the park, firstly we played with the girls at the play park then we walked along the path, it took us passed the fabulous cycle play area and then onto The Model Village. We all went in. What a wonderful set up, it looks amazing. The chap that booked us in was lovely, explaining to the girls if they found all the gnomes they would get a prize.

we arrived at The Premiere Inn. https://www.premierinn.com/gb/en/hotels/england/lancashire/blackpool/blackpool-east-m55-jct4.

Premier Inn have got it right.  Staff wearing masks or visors.  Comfortable rooms were immaculate.  Service with a smile.  There was a restaurant attached, we booked to get a meal.  There was hand sanitizer at the door entrance and everyone used it upon entry.   We ordered our food using our mobile telephones and within 15 minutes hot tasty food was served to our table.  

We went into Blackpool for the evening after our meal, we parked on the sea front.  Made our way to The South Pier.  On the pier there are plenty of rides to keep us amused.  The girls eyes were like saucers, their heads bobbed from side to side taking in all they could see.  The bright flashing lights, beeping sounds and clunking of coins rattling was their first sight and sounds of the pier.  Lots of 2 penny machines to play, big glass boxes with cuddly toys to try and grab to win.  We played some games, had amazing fun came out the other side to a funfair on the pier.  Stuart, Alexandra and Grace had great fun on the rides.  This was a taster for the big rides next day.  

We had a great sleep, rooms comfortable, had a buffet all you can eat breakfast.  Again, Hand sanitizers were offered.  Tables clean.  Physical distance maintained.  

After breakfast we made our way to https://www.blackpoolpleasurebeach.com/

What a day we had.  We had already booked our tickets online.  When we arrived at the park, all staff had masks on.  They maintained a very professional approach.  We all went on the rides, and enjoyed them very much.  Steve missed out on my mum’s favourite ride, the log flume – oh boy is he glad he did.  When I got off I looked like I had fallen in a river.  I was drenched.  Certainly didn’t stop me enjoying it.  Pretty sure the ride we all liked the best was The Wallace and Gromit Ride.  It was so good we all went on it twice.  

Blackpool has a lot more to offer than most people think.  It’s not all kiss me quick hats, candy floss and Blackpool rock.  Yes these are readily available and suckers like me, love hats, cannot resist the feel of cotton candy on my lips and so enjoy seeing the rock being made into different colours, shapes and flavours; the most beautiful looking baskets of fruit of rock.    Blackpool is UK’s Las Vegas; bright lights, casinos and lots of puggies.  What fun we had at Coral Island, playing the machines, collecting the tickets, saving them up in return for prizes at the end of the day.   At the end of the excitement we remembered we had parked the car quite some way away.  There was no way my legs were going to carry me.  Bus, tram, taxi?  We were going in style.  We were going in a horse in Carriage,  it was a princess ball covered trap pulled by a single horse.  I was as excited as the girls.  What a wonderful ride it was.  

Our last day in Blackpool was my birthday.  It was as if I had stepped back in time.  The sun was shining, it was beautiful and warm and we were going to Stanley Park.  This is somewhere that has the most amazing childhood memories.  Feeding the birds with my parents and grandparents, walking in the stunning well kept gardens.  Chasing my sister around on the large grassy areas.  This day was no disappointment, we walked into the park, firstly we played with the girls at the play park then we walked along the path, it took us passed the fabulous cycle play area and then onto The Model Village.  We all went in.  What a wonderful set up, it looks amazing.  The chap that booked us in was lovely, explaining to the girls if they found all the gnomes they would get a prize.  


After the model village we headed to the pond. Everything was just as I remembered. We fed the swans, ducks and pigeons. The birds were delightful; so calm. Could have stayed there at the pond all day. It was so inviting and relaxing. We went for a walk in the beautiful large park. Into The gardens, where there were so many pretty flower beds and array of colours. Seating provided to enjoy the water feature. Alexandra couldn’t resist putting her hand in the water flow. This made me grin from ear to ear. Stanley Park is a happy place, somewhere that makes me feel at peace with myself. Great for running around with the kids, or dogs and kicking a ball. Or taking a slow leisurely walk and soaking in the rays whilst gathering thoughts.


On the walk back to the car we encountered a doorway. We made up a story who may live there. Stuart, Alexandra and Grace knocked on the door – no answer, I shouted out the giant is coming…….. they about jumped out their skins.

we got back to the car very safely and drove back to Scotland. Until our next visit.

A fabulous time had been had by us in Blackpool. I didn’t buy rock, or kiss me quick hats. No cotton candy was eaten. However laughter was top on the agenda. Many childhood memories were rekindled. Walking along the paths of Stanley Park I had my Mum, Granny and uncle Allan alongside. I could feel their spirits watch over. Feel the warmth love. The girls enjoyed their time in Blackpool I’m sure as much as I did when I was a child.

If you think you know Blackpool think again. It’s worth a visit.

Carcinoid Syndrome Investigations

So as usual life goes on, and as my half full glass is starting to waver I feel my flushing increase. As I struggle in the Wetroom with a shower, turning off the water I sit on the stool provided by my occupational therapist. I look down at my mottled feet as I struggle to get my breath. I used to get just a basic carcinoid flush – the face and neck; a red rash. However, now when I am utterly exhausted I experience a full body flush, from my toes to the top of my head and believe me it’s not pleasant. At times it coincides with palpitations. Steady thumping, loud familiar beating that I have become accustomed to. Net Cancer with carcinoid syndrome requires regular Carcinoid Syndrome Investigations.


Carcinoid Syndrome

When I last saw my NET specialist I had bloods taken and was asked to pee in the usual container for 24 hours. He telephoned me a couple of weeks later. He asked how I was feeling. I told him the truth, I am struggling some days more than usual, he said he isn’t surprised. My results are elevated , well a tad more than elevated. He recommends an early echocardiogram and a ct scan with contrast of the chest, abdomen and pelvis. I told him I’ve been having problems with the peg; the balloon bursting and the nurses putting in 20 mls of water on The Monday, the following Monday only 9 to 12 mls of water left in the balloon. He said he would get them to look around the peg site whilst in ct scanner.

Within 10 days I was seen at East Lothian Community Hospital in Haddington for my echocardiogram. Steve drove me right to the door. There was masks, hand gel and gloves provided on a desk. At the reception desk the receptionist directed me to the appropriate area. Just a very short walk down the corridor and I was there. Waiting area 3. Five minutes later a lovely radiographer called my name. She had her mask on and escorted me to the room. She asked if I had an echo before, I said I had. She explained exactly how things would go today, helped me onto and then told me how to lie on the couch, put my left arm up and hold onto the handle. This lovely lady made me feel completely relaxed. She talked me through the whole process. Despite the procedure taking around 45 minutes it was painless and actually dare I say it relaxing. Echocardiograms are a necessity for people with carcinoid syndrome. Since many of us get carcinoid heart disease.

CT Scan

Seven days after my echo I was at The Western General Hospital in Edinburgh for my CT. I got a letter explaining it would be best if I entered the hospital alone. Detailing exactly where to go and what would happen. When I entered the main building, again a table with gloves, gel and masks. Off I went to the desk of main X-ray. Approximately 24 inches from the reception desk there was tape as a marker to stand at. I held up my letter and the receptionist scanned it from afar. I took a seat in the spacial distance waiting area. A warm friendly face came to me with a jug of contrast. Yes you do have to drink all this I’m afraid, but you have an hour to do so. Hour passed, Jug drunk, radiographer took me to the CT area. I sat on the big blue chair. She looked at my arms, which one is better? Take your pick I said. She tried the right, got in, blood bounced back into the syringe, vein collapsed. Tried the left, nothing. I will go get someone else she said. I told her it wasn’t her fault, getting into my veins is always a problem, the phlebotomist usually uses a butterfly to take blood. Unfortunately today the cannula needed to be on the bigger side, the solution that was going through whilst I was getting my scan was going to be thick and sticky. After a second try the next radiographer finally had better luck. Time for my CT scan. Escorted to the room, the pleasant ladies assisted me on to the scanner, hooked me up and the donut did its business. The familiar voice of breathe in and hold. Then the solution going in. No matter how many times I get this scan, know this is going to happen I still have the same feeling; strange taste at the back of my throat, oh my that hot flush feeling and then the thinking that you have wet yourself. All finished. A lovely young gentleman came in the room, helped me of the scanner, escorted me out the room and took me to the waiting area. He asked if I was ok, I was shivering and pale, I explained I’m always freezing. A nurse came with a blanket and wrapped it round me. Pampered or what!! He told me I would have to sit for 15 minutes before getting my cannula out, just to make sure I was ok. I was; a jolly nurse took it out. I set up my peg feed and resumed my body back to normality.

I met my hubby at the entrance of X-ray and we made our home. When I got home I was ready to put my feet up for the day. In the evening I checked my emails, one from my net consultant checking in on me. I let him know thats the scans done. He sent a reply back. Wonderful service from our NHS. Especially during these difficult times. Many tasks have become a new normal for some. Maintaining social distance, offering masks, gel, gloves, etc and keeping everyone happy and getting things right is an extremely difficult job. For this I Thank you from the bottom of my heart. Without my district nurses, doctors, consultants, hospital staff, dieticians, occupation therapists, pharmacist etc My family and I would find life impossible.

10th November Approaching……

For Me November has always been a fairly memorable month. I have a brother with a birthday at the beginning of the month and a sister with a birthday at the end of the month. The last day of the November we celebrate the Patron of our country – St Andrews Day. Guy Fawkes night; 5th November is a special night on our calendar – Steve and I got engaged in 1984, what a wonderful night that was. Fireworks at my parents and then a trip to Edinburgh with Steve and some university friends.

All of these dates are still in the diary, special to me, with some others added. And now there is one anniversary date that is noted worldwide. The date is November 10th every year. Its NET Cancer Day. Aiming at promoting awareness. Folks all over the world raise awareness in different ways.

Me personally, I have organised, with the help of friends, a tea party and a music night. Both events were on the weekend of the NET Cancer Day and raised money for The Ann Edgar Charitable Trust. Three years ago I did some something myself, just simply smiled every day for 21 days and asked folks to donate something, even if it was a penny. My consultant, Prof Mark Strachan, the fantastic late Linda Story and myself did a radio interview, fairly lengthy – raising awareness two years ago. Many people have coffee days – lets talk about nets.

This year, 2019 – November 2019 is a Sunday and I’m looking forward to going to The NET Forum organised by The Ann Edgar Charitable Trust in Edinburgh. There will be talks on offer from Net Specialists; Consultant, oncologist, Net Nurse. Charity Trustees. Information will include PRRT Information, Patient and Carer Support, whats New in Nets?, Relaxation.

Forums allow others to get together, whether its other patients, their family or friends, health professionals and people generally interested in finding out about NET Cancer. You get a chance to ask questions about symptoms, treatments, etc, and meet other people with the same rare condition. Its absolutely wonderful that health professionals are willing to give up their Sunday to share this time with us folks that want to go to the forum. Its great to see passion in the doctors and nurses outside the hospital. It makes me very proud and confident in our NHS.

For anyone thats interested in finding out more about The Ann Edgar Trust. You can look them up, at http://www.taect.scot They really are a good support network, our monthly net natter meet ups, chat on facebook. And at times we get together and do something together outwith the meeting. It really does help turn that frown upside down.