Sunday Afternoon

Our usual Sunday Afternoon consists of a ride on our Harley Davidson.  Meeting up with chums from the The Dunedin Chapter Scotland and visiting my Dad.

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This particular Sunday we are still in lockdown and restrictions still apply.  We are very that we are surrounded in the most beautiful countryside, our garden is larger than most.  And we can certainly exercise and get fresh air without bumping into anyone if we want.

For some time there has been an area near the front of the house that we would love to put some hard standing to cover the dirty area that gets mushy when folk park on it, despite all the chipped area around the house.  Steve brings round to work with some beautiful natural stone.  And begins to lay it.  Our Harley Davidson Fat Boy sits in front of the house looking lonely.  Our labs, Buddy and Bella stand together at the front of the door, waiting eagerly until I finally say they can come and join me while I put plants in the pots at the front of the house.

 

 

 

They are so happy once they join us out the front. Watching Steve cut the stone and lay it.  And me put some petunias, lobelia, pansies and a few other plants in pots.
The one thing that certainly hasn’t changed about the Sunday Afternoon is we spend time together.  Have a lovely day no matter what we do.  Just make the best of it.  Life is for living.  Live, laugh and love everyday.

And always make sure we make time for ourselves.  My time is writing.  Which I love love love.

Have a great day folks.

 

The Arrival of The Coronavirus

We are approaching the end of March 2020 and this weekend we should be away with friends from the The Dunedin Chapter  ,

I so enjoy being part of this group.  It is our biker family.  From the second we joined we felt part of something.  A warm welcome always awaits us, a support network is available in variety of ways.  Help with the physical Harley Davidson motorcycles; buying, servicing advice, etc.  Things to do; runs, rallies, etc.  Friendship; many friendly faces, great companions, lots of advice, etc.  Socialisation; we all get together and have meetings, weekends together, nights out, lunch meetings, breakfast clubs, chippy runs, etc.  All in all I love belonging to The Chapter.  We are now on to our second Harley Davidson, I have been on motorcycles since I was under 5 years old,  on the back of my brother when my feet couldn’t reach the footpegs.  I have been a pillion to my hubby since I was 17 years of age and I’m now nearly 54.   We have had motorbikes the majority of our married life.  Fifteen months ago we thought we would dip our toes in the water and visit West Coast Harley Davidson for a look at the bikes and what they had to offer.  before we knew it we had  decided it was time to get ourselves a Harley, it was a little Street Rod.  We thought best start small  and not break the bank.  Just to see how we would like the ‘Harley way of life’ and boy do we love it.    While we loved the wee bike, it was just that, too small and So a few months later we traded it in for a beautiful fatboy low.  We got this one at Edinburgh Harley Davidson

This weekend a trip to Aberdeen had been organised by our Harley Davidson enthusiastic friends.  We were all getting together to stay a night in a hotel and have a night out and raise money for the air ambulance.   The plans were, to take a drive up together on the Harley Davidsons if the weather was warm enough and I was feeling up to it, if not take the four wheels and book in to the The Craighaar Hotel in Aberdeen

 

I was so looking forward to going to Aberdeen. Due to my health, the neuroendocrine cancer, the carcinoid syndrome, the treatment I need and the fact that I get fatigued very easily I don’t go out that often.  I find life difficult, some days a general task feels like I am walking around with a 25kg bag of sand on my back.  Needless to say I am very familiar with my own surroundings and am used to being in the 4 walls I live in.  I can be home for three weeks without crossing the door.  My district nurses come to ‘service’ my peg.  Change my dressings, administer my octreotide injection and deal with any other at home health condition I may require. They are wonderful and I couldn’t do without them.

Although I am used to spending time at home on my own, with the company of my two Labrador’s within my four walls I do spend quality time writing, which I enjoy a great deal and I have embarked on a course which I love the challenge.

Suddenly the world has been hit by an eerie storm, one which we have never seen the like before. The human race has been struck down with Coronavirus.   The arrival of the Coronavirus is here.  For a great deal of folk it has been fairly harmless, however for many it has proven deadly.   To find out a little about coronavirus visit – https://www.nhs.uk/conditions/coronavirus-covid-19/

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Countries such as Spain and Italy are ahead of the UK and have many deaths and have put in strict measures. Here in the UK, we have had to take on a different way of life. Schools have been closed, where possible people are working from home, people are instructed to stay home unless exercising, which is only once per day. Social distancing has been put in place, with everyone to keep 2 metres apart. All these measures have been put in place to try and Stop the spread of Coronavirus. This virus is escalating and getting out of hand, we need to self isolate and stop it. Many people have it, are in hospital, some very poorly and on Ventilators. It’s all such a worry. People are wearing gloves, masks and using hand gel in abundance. Hospitals are running short of ventilators. There are more people needing the machine that the country has; something has to be done.

A team put their heads together – staff from formula 1 Mercedes , staff from University College London hospital (UCLH), and a team from university college London to adapt and improve existing CPAP in a process known as reverse engineering.   Basically they have helped create a breathing aid to help keep coronavirus patients out of intensive care.  You can find out more at the following – Mercedes F1 team helps create breathing aid

Life has become very strange for many people, our country is in lockdown, bars, cinemas, restaurants and many shops are closed.  Public gatherings are banned.  Plus many more other measures are put in place.  Some people feel sorry for themselves and are sitting at home whining and moaning, complaining they are bored and wishing they could get out of the house.  Whilst its understandable that they may be bored, sitting at home when they are used to working several hours per day and keeping busy.  Or going out and having fun, playing sports or going to the cinema, etc.  However, these restrictions have been brought in for our own good and it won’t be forever.  We should take time at home, learn a new skill, cook, draw, do a bit of gardening, enjoy reading a book, do some knitting or sewing, play old fashioned board games.  And most importantly our thoughts and prayers should go out to people that are in ICU beds in hospital, on ventilators, fighting for their lives.  This virus not only attacks the vulnerable like me, or the elderly like my 87 year old father, it sadly took the life of a young lady of only 21 years of age with no known underlying health conditions, it also took the life of a 54 year old doctor, the youngest person to die has been 18 years of age.

I did read a couple of pieces of good news the supermarket Asda is donating £5 million to   fareshare and  The Trussell Trust to help the country’s most vulnerable people through COVID019  Asda will prioritise access to stores for NHS staff as of next week every Monday, Wednesday and Friday 8am – 9am in larger stores.   Well done Asda

I know the next few weeks are going to be very trying for us all.  The NHS are doing a fantastic job in looking after the patients in the hospitals, at home, etc.  Carers are looking after the vulnerable the best they can.  Supermarket staff are stretched and pushed to the limits at times, the shelves look like its christmas, with the exception its not happy, clappy cheerful customers, its frightened folks walking into the unknown.

For me tomorrow Ive got my district nurses coming to do my dressings, service my tube and give me my two weekly octreotide.  Tomorrow the nurses will be gowned up, masks on.  Whatever will my labradors Buddy and Bella say, they won’t be getting their treats for mummy being a good girl and getting a very large needle jagged into her.

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.