Santa Steve on his Harley-Davidson®

We may have differing opinions at the moment. Has the Government made the right call? Is the NHS doing a grand job? Should the kids be going to school? What really should be happening at Christmas. However, I think we can all agree to that regardless of our point of view everyone is needing a little festive cheer. Steve and I thought it would be a lovely idea to introduce to our community Santa Steve on his Harley-Davidson®

My husband and I don’t have the easiest of lives as many of my blog readers know. We have been through a lot in our nearly 55 years of life. Although the we both say we feel very lucky in life to still be in love after getting together in 1982. Absolutely blessed to live in such a fine county as East Lothian, even better that we have managed to secure a house in Boggs Holdings, Pencaitland and bring up our sons there, and now enjoy the sound of our grandchildren. The area is one of beauty and community supportive. Community spirit is important to Steve and I and we wanted to do something.

Since the start of the restrictions we haven’t been out on the Harley-Davidson® very much at all. In fact I have been at home and have only left the house on 7 occasions since April, and three of them were essential hospital visits. Steve has managed to take the bike out runs as and when social distancing allows; which has been great. We were talking about this and realised many people would be like me and would not have been out very much at all this year. Now as Christmas is approaching, children getting excited and looking forward to seeing Santa. There are many places parents cannot take their wee ones to see Santa this year due to the restrictions.

Steve and I are members of an organisation – this is the Dunedin Chapter is where many of us Harley owners get together and go runs together, etc. Seriously, a lot more to it than that. We love it. With the Chapter on Saturday Steve was going on the Santa toy run in Edinburgh – this is a charity run to drop off presents. He decided it may be a good idea to post on facebook to our local Pencaitland page would they like a drive by from Santa Steve in the afternoon after he had finished his charitable run with The Dunedin Chapter. Soon he got replies, Yes please.

I emailed the local police station, who were fantastic and called Steve right back that day. Gave him the authority to drive through the village. Bike dressed up in tinsel and lights, Steve in Santa suit. He left our home and I posted on Facebook he left. He drove through the village.

Steve was met with smiling faces and waving hands. I checked on Facebook; there were comments – where is “Santa Steve ?” “I’ve text you….” soon photos and videos were put up. And then comments of thanks.

The community spirit in the village brightened my day and lifted my heart. Thank you to all the children and adults who came out to see Santa Steve. I hope you all enjoyed Santa Steve on “Fattie Scot” : the Fatboy Harley-Davidson® dressed up in tinsel. I know he had a great time driving around the village and waving at you guys.

Merry Christmas and wishing all the best for 2021.

We had many many comments including:

Superstar Steve!

Thank you so much, Lots of excited wee ones thrilled to see Santa

Even us ‘big yins’ enjoy seeing Biker Santa around the village! well done and thank you! Merry Christmas

Fabulous idea, great fun, thanks for bringing some joy round the village

Thank you so much for doing that, absolutely magical. My little one won’t stop talking about you! Really cheered us up on this bad news day

Very happy kids (and me) even though the tiny tot was a bit unsure

Thank you for visiting Huntlaw Road! My daughter was very excited to see you

Thanks to u for visiting Limekilns

Thanks very much for doing that…… highlight of our kids day (mine too if I’m honest)

You looked and sounded the biz! Thanks for making the effort Steve

My kids were delighted!!!!!!!! thank you so much

I think we were your first at The Boggs, Thanks so much the kids absolutely loved it

Thank you very much, we saw you from a far and there was mass excitement at our house!

Thank you it was brilliant, such a lovely thing to do

Thanks from Pringles Place. My kids loved it

Thank you for coming by the Green! My 5 year old daughter was DELIGHTED to see you!! Merry Christmas Santa Steve

Lovely Steve

Well done Santa! A much needed bit of cheer!

Thank you the kids were delighted, at this time anything that brings a smile to a kid’s face is well worth it

Such a lovely kind thing to do for the kids! Thanks so much Steve. Merry Christmas to you

Thank you my wee granddaughter Mia was chuffed to get fist bump at Queens Drive

Saw you from the window at old farm court & really appreciated it! You’re a star and sure all the little ones loved it. Merry Christmas

My kids at Woodhall loved it! Thank you very much

It was fab

THANK YOU

More writing and less riding

As the days are getting shorter, temperature is dropping and the amount of ideal biking days for someone like me are few and far between. I find myself having more time to sit by our beautiful open fire and being grateful that I can reflect on events over the last few months. And hopefully look forward to what the world has in store for us all as the shortest day of the year will soon be here and then the days get longer, we have a vaccine thats getting rolled out for Covid. Since April I have only been out of the house for essential visits, such as the hospital. In total, I have been out of the house a total of 9 times since April. When the restrictions were relaxed I went out with with hubby and some friends from The Dunedin Chapter, under strict social distance for a Harley-Davidson® bike ride. At the beginning of September I took the position of Editor with The Dunedin Chapter, I so enjoy writing about the motorcycles, events, editing members articles, etc. Despite the fact I love being on the Harley-Davidson® I have got to admit I have benefited from having quiet time, time for me and certainly endured More writing and less riding.

The last few months have been fairly stressful health wise. Lavita – my gastrostomy tube has been playing up. I was in utter agony with my last change. The lump on my shoulder is giving me some grief and the pain in my humerus at times is unbearable. I remember 24 years ago I was at nuclear medicine with my Dad, he wasn’t feeling well at all, and he the pain he had was eleven out of ten. The consultant said to him I can clearly see you are in a lot of pain, however you are not complaining. My Dad said to him, I just close my eyes and take myself on a journey, close out the world and try and dream it all away. It doesn’t take it all away but it helps, my Dad told him. I took this with me that day. On the days I feel I can no longer cope, I think of my Dad and his journey.

While I am on my mind journey I can relax, take time to myself. I can think about what may be in the spring. Hoping to get out on our Harley. Have the boards put on the back for my little feet for comfort for those longer rides. Get the Nikon out and take some photos of our beautiful country. As usual the medics have been looking after me; appointments that cannot be met in person have been on the telephone or video call. So I am fairly confident as and when the weather breaks and getting out and about restriction levels allow us to travel around safely I will be able to ride pillion with my hubby.

The one benefit of being at home is I have been able to write a lot more. I find pleasure in writing for myself and other companies and organisations. Working as Editor for The Dunedin Chapter Scotland HOG® #9083 I have just completed my first quarterly Newsletter. I have been humbled at the amount of caring messages from members. Lovely emails and texts saying what a great Newsletter, so kind. Working on Newsletter was hard work, working to deadlines, fitting around others, editing folks work; taking out some parts that I know they would really want in but know that I was tight for space – all in a days work for the Editor. Yes there was lots to do, it took many hours, a lot of the time it was at an hour I haven’t been used to tapping my fingers on the keyboard on my beloved Apple. However when its a subject you are passionate about, the folks sending in articles are lovely and most importantly the team you are working alongside are supportive. It makes me feel proud to be party of a warm and friendly happy Harley Family.

On The Fatboy Aviemore, Scotland TITG® Mass Ride

Thankful for my smartphone

As we approach the latter months of the year I have become more and more grateful for technology. In particular my Apple laptop, smartphone and iPad. Whether, it has been a FaceTime GP call, a hospital appointment or a chat with a family member, my iPhone has been invaluable. When the lump on my shoulder caused my home nurse concern, first a photo taken from my phone, emailed to my GP, then a FaceTime call so she could see it, then decided it did warrant a GP visit and examination. Fabulous camera on the phone, such great photos you get from it. I’m so Thankful for my smartphone

I have my smartphone linked to my MacBook and my iPad. When I take a photo or put an entry in the diary on the phone it goes into both the laptop and the iPad too. I love to take photographs. Photography is a great passion of mine. One of the most relaxing activities for me is to pull out my Nikon camera and shoot some images. However, if I am standing at the back of the house watching my beautiful 4 year old granddaughter and our labradors taking my phone out of my pocket at an opportune moment to capture a memory. This week is my octreotide treatment week, belt and braces, it’s in the diary in my phone; alarm set on on phone to go off 40 minutes before my nurse is due, so I can take it out of the fridge. It’s much easier to administer and more comfortable if it’s not too cold. Nothing worse than a freezing cold substance going into your hip area. I don’t have much fat or muscle on me as it is. My make up is pretty bony now and the thick needles are getting kinda sore as they go in. But what I have to remember is no pain no gain. If it wasn’t for these injections I probably wouldn’t be here today. They reduce the rate of bowel motions incredibly, I no longer look like a Ribena kid all day long and its pretty well proven they slow down the growth of net cancer. All in all bloody good job I would say. And most certainly worth the pain in the ass they give you.


Buddy and Bella with Alexandra

Since the middle of March life has became very different. The arrival of Covid-19. Lockdown, restrictions to the way we live, finding a new normal. For the time being at least.

I use my phone and iPad to have chats with my family and friends. Not only your traditional blether but the most fabulous video calls. We laugh, sing, play games; a telephone call has never been so much fun. On my laptop and iPad I keep in touch with friends from my cancer support group, TAECT we have general chats, quiz days, information talks. I also keep in touch with my motorcycle friends at The Dunedin Chapter. To take part in quizzes, talks, chats, etc we use Zoom

Technology has been my lifeline over the last seven months. I haven’t had many visitors. I have only visited my dad on two occasions since March. Going out of my front door doesn’t happen very often and seeing people in the flesh is something of a novelty at the moment. Ive taken to talking to anything that looks interested and stands still long enough to listen; for instance yesterday morning I was sitting on the sofa wrestling with my slippers, the table lamp to my left was my conversation buddy, mind you I got the right kind of answers, I guess he agreed with me, I got a silent reply I took this as an acknowledgement of approval.

My other method of keeping in touch with family and friends is social media platforms. Linkden Twitter, Facebook and Instagram are the ones I use. Fabulous for keeping in touch, sharing information, posting articles, photos, etc. I use the messenger to chat. I also use WhatsApp. A good way of communicating with chums. We share stories, snaps, etc. A great way of cheering each other up especially when the mood is low.

Whilst my technology is great for communication and keeping me in touch with the outside world whilst I am shielding. The laptop, iPad and phone also have been used in more than I thought they would be.

During these difficult times many banks have closed their doors. Leaving many of us to online bank more than we used to. Me, I have banked online for what feels like a lifetime. My health before covid forced me to make changes, so I guess I have found it fairly easy to adapt. I use my laptop, iPad and smartphone to bank. However, I have to admit the app on the smartphone for the Natwest Bank https://personal.natwest.com/personal.html is so easy and convenient to use.

I use my Phone to order shopping, order my prescriptions from the GP, order the feed needed for the month from Nutricia to keep me going with through the gastrostomy tube.

Checking emails and going online is so easy with my smartphone. One click and Im there. Its so easy to download apps. https://www.apple.com/uk/ios/app-store/ There are so many different apps, something for everyone, from games to weather. Have a look, and give something new a try. It really does brighten your day.

When I first got a mobile telephone it was for work, it was to answer calls and check up on how MY patients were doing. That feels like another lifetime ago. Now I use my smartphone as a tool, to go on the internet, check my emails, send messages, take photographs, occasionally let my granddaughter play a game, oh and of course make a telephone call.

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