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

Harley Davidson run in The Scottish Borders

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

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

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

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



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

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




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

Vicky Green Challenge


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

Scots View



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


Scots View

Felt like a teenager

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

Steve & I on The Fatboy

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

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

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

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

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

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

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

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

https://www.westcoastharley.com

A Glimpse of the Harley Davidsons that were on the trip

Two Palaces and a Castle

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

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

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

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

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

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

Meeting up at The Gates of Holyrood Palace

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

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

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

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

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

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

Hurrah 😀 For Dunedin Chapter

As most of my regular readers, friends and family know Steve and I are proud owners of a Harley Davidson motorcycle. For the last year we have been very happy members of The Dunedin Chapter http://www.dunedinhog.com

 


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I mentioned the motorcycle club in a previous post. All folks have welcomed us with open arms into the body of the Kirk. For us it’s been a lifesaver. Gave Steve and I new people to meet, places to go. Steve, can go out ride the bike Without me and meet up with others, and when I’m up to it we go out together and boy what fun we have.

The Chapter isn’t all about riding bikes mind you. They do a great deal of charity work. Easter egg runs, Santa runs, fundraising for The sick kids, Kats Mission, need I go on. I am very proud to be a member.

TAECT promotes awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. Have regular support meet ups all over Scotland. Health information days with drs and nurses giving up their time to offer advice.

Last weekend the chapter had a dinner dance in Grangemouth. Edinburgh Harley Davidson kindly donated a couple of leather jackets and many members donated raffle prizes. On the night, Ben and Hilary went round the room with raffle tickets to sell to us party members. Drew the raffle and there were many happy faces. A very big well done to all the folks who donated and another massive well done to members for buying raffle tickets. £830 was raised for charity.

The Chapter decided to donate the £830 to one charity. That charity is one that has given me so much support, particularly over the last couple of years. Without their kindness and support at times I would have been quite lost and lonely. This charity is Scotland’s only neuroendocrine cancer charity – The Ann Edgar Charitable Trust. http://www.taect.scot

 

As most of you will know TAECT works very hard at promoting awareness of neuroendocrine cancer and offers support to all those affected with cancer, net tumours, carcinoid syndrome; patients and their families/friends/carers. The charity has many regular support meet ups all over Scotland. Information days take place with consultants, oncologists, drs, nurses giving talks and offering advice.

 

I would like to say a big thanks to the two groups I belong for different reasons. However, both make me feel very welcome and let me be ME, no one notices my gastrostomy tube, makes comments about me not eating, etc. Its wonderful. Riding on the back of a harley davidson with a peg feed isn’t always the easiest. But we manage. Life is for living and I want to enjoy and spend as much time as I can with my wonderful hubby and hear the roar of that Harley Davidson Fat Boy ………… nothing better

 

 

 

 

 

 

 

 

What and who keeps me going……………

Prof Strachan asked me to go see Prof Seckl. That day came, on walking out of the room after seeing Seckl I felt like I had hit a brick wall. He was lovely, my kind of guy; told me how it was. And certainly left me under no illusions. A lot of water has gone under the bridge since then. Many treatments, meds, sepsis, infections, peg insertion, trips to London hospitals under the care of the wonderful Prof Martyn Caplin, etc, etc.

Living with this disease is so difficult. Every day produces a challenge and no one day is the same as the other. My carcinoid syndrome can be very unpredictable and difficult to live with. The palpations, flushing, diahrea, chest pain, weight loss, sudden drop in blood sugar, malabsorption, photosensitivity – need I say more. All these symptoms have a knock on effect.

The day my consultant Mark Strachan handed me the card with details of The Ann Edgar Charitable Trust it was a lifesaver. What fantastic support network and great friends I’ve made. Cancer Patients, their families, friends get together for net natter meetings. Share like minded conversations. We know what each other are going through. The charity runs information days by health professionals for both patients, families, friends and health professionals. I’ve made some brilliant pals, sadly a few of them are no longer with us. And boy does it hurt that they are no longer here. Two of ladies in particular I miss terribly. Thats the reality of the group. Our condition is incurable and its inevitable it is going to happen. While its hard to meet folk, get close, and know they are going to leave. Well I guess that it will happen to us all one day. And I would rather have a great time getting to know these lovely folk, sharing some time, even if it is short – shorter for some than others. When we do meet we have fun; go to the pub; have a magic show, ride on a barge, go to the garden centre, go to the theatre. I just know I would have struggled to have gotten through the last couple of years without the chat and support of my cancer buddies.

Whilst I get support from the group. I get an excellent support network from my nurses. they are absolutely fantastic and I’m sure I would go completely bonkers if they didn’t come in before lunchtime and deal with my gastrostomy tube, dressings, give me my octreotide, etc etc. Oh as well as giving my labradors treats. Buddy and Bella love Nurse Evelyn very very much.

My family & friends – you guys are amazing, as always. I couldn’t get through the day without you. It isn’t only the big things like taking me to the hospital, helping clean the house, etc its the love, a smile, touch, a simple text or WhatsApp, a short phone call – no there is no such thing as a short phone call with me – that really helps me feel better.

Since I was a child I have always love motorcycles. My brothers had bikes and I loved to ride on the back of them. When my boyfriend, aged 18 got his first bike I was soon on the back. We got married, day of our wedding to get a pair of shoes for our wedding I jumped on the back of the bike, nipped into Edinburgh and bought a pair. Day before giving birth to our first son I was on the back of husband Steve. Thirty two years later, husband and two sons, Tony and Stuart all have bikes. Steve and I have changed direction and we have gone for a Harley Davidson. We have joined a Harley Davidson Owners Club – best thing we have ever done. Days I feel rubbish Steve can go out on the bike and be with the guys. We have made many new pals. Its like a big family. Who are they? The Dunedin Chapter Scotland. They have just celebrated their 25th birthday. I go on the back of the Harley Davidson with my peg feed on. Couldn’t get on it any other way. Need my sugars to stay up. Its fun, I can put all the worries to the back of my mind and enjoy the thrill of the ride. Meeting new people is great. It doesn’t have to be exhausting I can sit on the bike and get off, join in when I’m up to it, go to a hotel for a rest and if I like or come home and sleep for the week. Its worth it. Its actually really good to be exhausted and sore and say you have actually done something. Most days I’m fatigued and sore anyway. When we want to go somewhere thats a distance away I use my disabled persons railcard and Steve drives the bike, we meet up at the location. It works. We only joined the club in February and already we have met many lovely folk and have been welcomed into the body of the kirk. Steve goes on regular rides weekly and meets up with the guys. Enjoys quality time being ‘Steve’ .

Life is for living and while I am still here I want to make the most of it and spend time with my family and friends. That includes quiet time with my hubby, time with family and friends and time with Ann Edgar Charitable Trust and The Dunedin Chapter. All help me cope with the dark days, the pain and sickness and the most awful days I just feel I can’t get out of my bed. Thanks Guys.