Hello 2021

For many 2020 has been a difficult year, and certainly for most a memorable one; it has been a year like no other I have known. My hubby and I spent Hogmanay at home on our own. Just the two of us with our beautiful Labradors. This was the first time ever we have been alone to bring in the year and say Hello 2021.

I must say although very different from our usual ceilidh, our last night of the year was a fun packed one. We took part in a family and friends Zoom quiz. Stephen organised it. A busy young Dad with three kids; Stephen and son Louis were quiz masters. We had participants from near and far. Laughing, joking and talking was definitely allowed. We didn’t come first in the quiz but did not disgrace ourselves. Looking forward to the next one.

We are one week in to the new year. Eventful already.

The balloon on my gastrostomy tube burst on Hogmanay. Wonderful efficient staff, it was changed immediately. Six days later the tube was loose, my dressing was drenched. My ever dedicated medics attended to me, yes the balloon on the just short of one week old tube had exploded once again. Nicola changed my tube and then gave me my octreotide injection. This was then a day for complete rest.

To be honest despite the feeling unwell, and the pain. I have enjoyed being home. Sitting by the open fire with my beautiful labradors. Writing and editing. We are in a second lockdown. Yes, it’s a worrying time and I so miss being able to go see my Dad. Strange times my family and friends not coming to my house for a visit. We have to remember these restrictions have been put in place for our own good, to prevent infection from spreading and a big plus point is that we have a vaccine that is getting rolled out to the general public. It will take a while but as time allows we will be able to go out more, visit and one day in the future live a “normal life”.

For some life has been more challenging. It may be they are a key worker and things are getting tough. The usual “go to” place has gone, and talking with others feels trivial. Please try and remember this when someone is looking a little more weary than normal, or talking less than usual, ask how they are – it goes a long way. When a person says they are fine, it doesn’t mean they are doing well.

During this lockdown children at present have to stay home and get home schooled. For many families this works well. But for some life is hard. In many homes there are more computers, laptops, tablets than human beings in the house. In other homes there is one unit in the home or perhaps none at all. When the children are home schooling they get work from their teachers, there are programs on television. The internet plays a vital part in a child’s education. Hence the importance of a piece of equipment to get on the World Wide Web. It’s heartbreaking to think that in this day and age of digital technology that some families lack that availability in their own homes. If you have a laptop, computer, iPad, tablet that’s surplus to requirements please think about handing it in for someone else to use. There is always someone in your area that can use it. You can find out more about recycling your products Here

Whilst the restrictions carry on I will continue with my Content Writing and Editing work. I am so lucky that I enjoy doing it. Photography is my passion. For the time being I am pleased enough with taking photographs in our garden, snapping images of things in the house, pointing and shooting my beloved Nikon at my Labradors, I think they feel like fashion models. Although my husband’s Harley is a great bike for taking photos of. Today was a grand day. I sat at my desk in front of my computer, did work on a newsletter. Then took some photos of a little visitor out our back garden. I’m sure he will be a regular visitor. A beautiful little Robin.


Robin sits on our back fence

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 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

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.