Neuroendocrine Cancer – Page 4 – smile each and every day

It started with a puppy

July 20, 2020July 22, 2020 by Lizbeth, posted in Uncategorized

Most of my regular readers with be familiar with Buddy and Bella my labradors. Buddy is my assistance dog, knows when I’m especially not too great, when the old sugar levels have taken a dip, he alerts me to take the appropriate action. He knows when the old ticker is playing up, the irregularity is a bit of a pain, sometimes the palpations are bangning through and I know that my heart rate is racing, however, when the blood pressure has dropped dangerously low, Buddy knows before anyone. Bella is his wife. And a great couple they are. My life is never been dull with my amazing beautiful fox red boy labrador Buddy and delightful loyal golden girl Bella.

The day I decided to breed them did not come lightly. Both my babies have great pedigrees. Exellent temperments and I had the confidence that they would produce fantastic puppies. However, there is always the worry – will my bitch be ok? how will the puppies be? The hard work it involves. I didnt want just to have the puppies and leave them in a room. I wanted them to be socialised, toilet trained, etc. Which would most definitely be a lot of hard work. Looking after my girl through pregnancy, sitting up with her during labour and helping look after the pups till good homes were found.

Soon Bella was pregnant, quickly she was a little barrel. We made her a breading box, gave her a room all to herself, so that when the pups were born, she would have peace and quiet. Time passed quickly and the pups were born. Dad was on hand, sat all the way through the labour. On the first of March 2015, 8 beautiful puppies were born.

This is the 8 Puppies

Bella & pups 1st March 2015

Eight healthy puppies looking for new homes. Ive got to admit I was apprehensive letting the puppies go. Leave us and stay with what to them would start of as strangers. As well as the folks phoning me asking questions, I asked them questions too. Good homes were imperitive. All prospective new owners came to view the pups, made a decision, had the opportunity to see them twice again before finally getting the pup at 8 weeks. One young lady that telephoned was called Sally. She already owned a labrador, a horse and lived with her Mum. Both of them worked, but it appeared that their work hours would suit perfectly.

First visit they were fair taken with the pups. They chose the lightest coloured pup, and told us his name would be Harley. Little did we know our friendship would grow into one of the best, all I can say is It started with a puppy

This is Harley

Harley is three weeks old here

The weeks flew in that we had the puppies. Buddy and Bella’s romance grew. And the puppies soon went from mums breast to porridge to puppy feed. I socialised them a great deal. Let them run around the house. Our hall is very long they ran along it daily when they were able. They played with toys, got used to the noise of the vaccuum, washing machine, etc. Let them get used of children and people.

Over the period of a week the puppies went to their new homes. When Harley went to his new home, his went to live with Sally and Marie. Sally worked at Edinburgh airport, two minutes from her home, The hours worked in great with her mums and Harley soon settled quickly with the resident labrador Cooper.

I am very fortunate that all my puppy owners have kept in touch with me and I know how they are doing and where they are. Harley is a very lucky boy. Harley grew up in a very loving environment with the company of the other dog to help him guide him on his way. He also had a great, firm however very loving and loyal owner in Sally.

The love and enjoyment Harley gave had a huge impact. It actually was the turning point in Sally’s life when she changed her journey. And started a whole new career. She started dog walking and dog day care. Her Mum Marie is very proud of her, its a big step moving on from employment to self employment; and making a success of it is admirable. You reap what you sow….. Marie your hard work has flourished. And beautiful Harley is the proud resident Labrador of Salspals.

You can find out much more at their website Sal’s Pals

Anytime I need Buddy or Bella looked after Salspals is the place I choose for my precious labradors to go. Whether its for a hospital stay and I’m forced to stay in due to treatment or an infection and my hubby has comittments that leave the babies at home all day, we will use the services. Or most definetly when I am feeling tickety boo and we manage a travel trip, especially on the harley davidson, and meet up with friends from the http://www.dunedinhog.com to attend a harley davidson ralley. Sally does a tremendous job of making you feel welcome, she really does love the dogs. And our dogs undoubtedly enjoy their time at Salspals. Their daycare is tailormade to your needs. Salspals is special.

Salspals is in an exciting period they are moving to their new premises; this is a fantastic new time for the business. It will allow the dogs to rest in comfortable and safe surroundings. Run around in a safe and secure area. However, dont worry there will still be plenty walks on the cards for our four legged friends.

Life is short and most certainly precious. We have to look out for those that we care for and those who care for us. The familiar sound in my house is the padding of Labrador feet at my side. Buddy and Bella are never far from me and that’s how I like it. The first time I left Buddy I don’t know who was more upset, it was like leaving a child at the school gates. I could hear him whimpering. In the 5 years I had him we had never been apart. Not for one night. When I left my tummy was in turmoil. I felt tears pricking in my eyes. Phone in my bag, so wanted to reach for it and call and say I would come get him. Not that I knew what I would do with him, it was 10pm and I was due at the airport at 5am. 10.45pm my mobile made a familiar sound it was a text with an image of Buddy and Bella on the sofa cuddling in. At 4-30am I received another one to say they were both ok, and asked how I was. When I landed there was a text and photo waiting for me. Then I knew my babies were going to be ok, in fact I knew they were going to have a great time.

Sally at Sal’s Pals – it started with a puppy

A Walk With The Dogs

July 8, 2020July 10, 2020 by Lizbeth, posted in Nets/carcinoid Syndrome, Tube Feeding, Uncategorized

Well its been quite a while since we have had limitations due to coronavirus. For many of us life has became a new normal, there are folk that listen to radios and watch the news on the tv in the hope for lifted restrictions. In the passed weeks restrictions have been gradually relaxed to allow us to see one another, within certain restrictions. I’ve been at home with my dogs and what I have wanted most is A Walk With The Dogs.

In Scotland this is our advice for now https://www.gov.scot/coronavirus-covid-19/

We are blessed to live in the country. Surrounded by beautiftul country side and not see a person, shop, house, or car for miles or hours. You may think that after being cooped up in the house you are desperate to talk to someone, alas no. The beauty and tranquility of our surroundings brought the most fantastic memories flooding back. Such wonderful thoughts and recollection of amazing trips with the boys, paddling our feet in the water and building a dam. For this walk I had the perfect company; my beloved husband and faithful labradors. They were just what I wanted and needed on this midweek evening.

We took a drive to St Mary’s Loch and Megget Reservoir. One of our favour places to walk the dogs in the evening , not a person in sight. At St Marys Loch there is a lovely cafe, that is usually open during the day, serves not only a great cup of coffee and cakes, but does great lunches too; fills the belly of many a biker with delicious homemade macaroni, curry, lovely sandwiches.

St Mary’s Loch is a lovely spot to sit and have a rest after a walk or drive. The drive to the loch is pleasant whichever way you are coming from, either Edinburgh, or down south. The loch is the largest natural loch in the Scottish Borders, its 5km long and 1km wide. It lies on the south side of the A708 between Selkirk and Moffat and is only 45 miles from Edinburgh, well worth the drive. The loch was created by glacial action during the last ice age. Why is the loch called St Mary’s? There was once a church dedicated to St Mary which once stood on its northern shore. Unfortunately only the burial grounds are now visible.

St Mary’s loch is fed by Megget Reservoir. The Reservoir is in the valley in Ettrick Forest in the beautiful Scottish Borders. The 259 hectares reservoir is held back by the largest earth dam in Scotland. The reservoir collects water from the Tweedsmuir hills.

The drive to St Mary’s loch was a fun packed one. Steve and I were singing songs in the car like a couple of teenagers, the dogs were panting in time to the music. They look out of the window and you know they remember every last stop and treat they had the last time they were in the car. As we drove through Innerleithen they got excited in anticipation, thinking we would stop at the ice cream shop and treat ourselves to a cone. No such luck, shops closed. Buddy’s face fell like a sulking child getting the wrong toy, However, the elation when we opened the boot and they got out into the open space. They ran about 10 yards, both of them came right back to me, Buddy gave me one almighty slobbery kiss so hard on the lips he almost knocked me over. Their way of saying we love you guys. You could see the happiness on their faces. Buddy my ever so handsome Fox Red Labrador and Bella, Golden Labrador; she is sensitive. Both dogs are very loving.

**The road alongside the reservoir is fairly uneven and narrow**

**Bella testing the water at Megget Reservoir**

**Steve, Buddy and Bella having a walk at St Mary’s Loch**

On the road from the loch to the reservoir it is narrow and somewhat uneven. It is a fairly steep incline to get up to the reservoir. As you are driving you pass some beautiful scenic landscapes. The road can get a little hairy at times and you have to remember what goes up usually comes down. Lets just says we were going slow enough to take in the enjoyable scenery.

The dogs reluctantly jumped back in the car and we too grudgingly took our seats in the car and made our way on the scenic five and a half mile journey to Talla Reservoir, just one mile from Tweedsmuir in The Scottish Borders. Talla Reservoir is an earth-work dam fed by Talla water. And is supplemented by water from the Fruid Reservoir nearby. It was opened in 1905. To assist in bringing the materials for its construction, the Talla Railway was built.

Second exercise of the evening and the dogs were very happy, tails wagging franticly. Big labrador grins on their faces; all labrador owners will know exactly what I mean. And if they could talk they would be saying thanks ever so much for coming here, we know you love it, so do we. There was a bird chirping its head off and yes it though Bella was going to go chasing it and have it for dinner. Bella wouldn’t. She would be more inclined to go get it some food or give it a cuddle. She has such wonderful mothering instincts, but the bird didn’t know that and it was quacking its head off so we moved on and left it in peace.

We had a wonderful time, it was peaceful, the dogs really enjoyed. Scenery was beautiful. Weather was dry what more could you ask for.

Time to jump in the car yet again. One last pit stop to do. It has many childhood memories for me, lots for my children. Was the route my uncle Allan took me on when I was learning to drive. We did many charity cycles, predominantly The Borders Push for Testicular Cancer. We were now travelling the 22 miles Talla Reservoir to The Meldons. As we took the right hand turn, signpost “Eddleston via The Meldons” and started climbing the narrow unmarked road. Buddy couldn’t contain his excitement, tail wagging, and his quiet panting sounded like an anonymous heavy breathing caller on the telephone. “Nearly there sweetheart” I said to him. Bella licked his ears. At last we arrived.

**Steve, Buddy and Bella at The Meldons**

**Steve crossing The Water With Bella at The Meldons**

The drive down to The Meldons was more than a pleasant one. Looking out of the car window as Steve drove and we chatted, there was so much going on. Sheep in fields, birds flying in the sky, so many different hedges, trees, etc. Various crops growing in fields, an array of different colours. We didn’t pass one car on the road. But then it was midweek and after 8pm by this time.

The dogs jumped out of the car as if they had never been out all day. Bella loved the water and paddling around, Buddy not so by this time in the evening he didn’t want to go in the water. Instead he was on a rabbit trail, nose to the ground and sniffing around and around very happily.

As I gently plonked my bottom on the heather and sat down to check how much feed I had left in my backpack, after all we had been out for quite a while. Great I still have at least over an hour on my pump feed to run. Sitting on the cushioned purple heather I looked around. Such happy memories came flooding from over the many years, lots of fun and many trips to this lovely location with family and friends. Sadly some people that are no longer with us but the reminiscence carries on and I will always have wonderful thoughts and memories. This is one of our happy places. For us a go to place.

Big boys do cry

May 24, 2020 by Lizbeth, posted in Emotions, Uncategorized

Being at home permanently since March 12th has certainly given me time to think. There has been many a lonely hour to reminisce. Its been lovely to look back and remember events that have gone by, places I’ve have visited, people that have came into my life and made an impression; left their mark.

In my 54 years of life its been happy, eventful and surrounded by a great many beautiful caring characters. From the moment I have been able to comprehend I was showered with love. As I grew up I was always shown kindness, the family philosophy was treat others as you would like treated yourself, I will never ask anyone to do something I wouldn’t do myself. Yes these days as I am getting less able and I will pay someone to clean, paint or fix something – I’m sure these tradesman appreciate the work.

Getting back to my time to think. When I was sitting putting my feed on I was thinking about when part of my job included listening to people and their problems, how they were feeling. I encouraged them to talk about their feelings. Express exactly how they felt at that particular moment and how to deal with it. I would gently persuade them to chat and through time just by talking they would soon realise what made them happy and what made them stressed and sad. We would work on the positive aspects of their everyday living and help them get back to a happy place. One thing that did happen to several people is that at some point during their journey was they would face an emotional encounter. Regardless of their gender, age or size they would talk about whatever may be bothering them, or perhaps on the contrary what has made them very happy that day and then suddenly the voice would go quieter, and that emotional encounter would take place; the real journey had begun and I would consider my work as continuing success…. Looking back at how a lot of us are feeling at the moment, frightened to show our emotions, a lot of people get told to be quiet, not talk about their feelings, not cry. If they do cry many are met with Now come on, stop that crying, pull yourself together. Stacy Solomon on Loose Women was talking on ITV and said her mum used to vacuum when she was crying, to hide the fact that she was. All very sad. We need to be allowed to show our emotions.

I still remember one particular chap when I was working, he was your average build gent, and a father of three, he felt he was failing all round, his family, his work, his health, and most importantly himself. Of course he wasn’t. When he got to his emotional encounter he quietly sniffed away the tears and continued to talk, shortly afterwards he described blurry vision and tears threatened to spill from his eyes. He wiped his eyes so much they were red and swollen. I handed him a handkerchief and said let the tears happen, please don’t be embarrassed. His lips trembled, an involuntary whimper escaped his lips as tears spilled over the sides of his eyes. He looked over at me, his face shouting out help me and please listen. His body wracked with an onslaught of sobs and tears. The tears raced down his cheeks. He cried for a few minutes. When we discussed events he explained how relieved he felt and thanked me for getting him there. We still had a way to go, however, the big lesson learnt was not to these suppress emotions; and deal with them appropriately – the basic emotions are happiness, fear, surprise, sadness, anger and disgust. The message from this experience I took was most definitely people gain from expressing their emotions, getting upset, talking about their problems; a problem shared. Big boys do cry.

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I most certainly do know being home on my own and having this time to think I also have to to shed a tear and I have probably cried more in the last few weeks than I have done so for quite some time. Although I do have to say my life is made so much better by those folks that message me and ask how I am, who give me a phone and have a natter. Please drop an email or a text or give a quick call to your pal or your mum, brother or sister, etc. I have noticed there are some folk that I only get texts if I send them one first, would I get one asking how I am if I didn’t send them one? Perhaps I would, maybe I wouldn’t!!! But one thing I do know there are some folks in my address book that we send messages to each other regardless, sometimes I’m first, sometimes their first. But one thing I do know we deeply care about each other and look out for one another. You guys know who you are; I love you.

Sunday Afternoon

May 10, 2020 by Lizbeth, posted in Uncategorized

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.

Hold your hand everday

April 21, 2020May 13, 2020 by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome

As the pandemic continues. We are still in lockdown. Life continues to be on a different path. Real life physical human beings I see; my husband of coarse, I live with him and so very grateful we have not only been lovers since 1982 but best friends. My nurses; to tend to my gastrostomy tube, change dressings, etc, etc. And see anyone from a distance at the door when they deliver parcels and mail.

Modern technology has saved my sanity. Steve and I having a long lie on Sunday morning, it’s 9am and my mobile telephone has that distinctive ring. I know it’s a FaceTime call. Simultaneously Steve and I say know who that will be. I click the phone and can hear the joyous tones. ‘Morning, what are you doing in your Bed Granny’? ‘Having a got chocolate’ is my reply. We are having a three way conversation between our house (Steve & I) , Stuart & Alexandra, and Teeny & Grace. It’s fab, we all blather loudly, the girls can’t believe we are still in bed. It’s Sunday, I say in my defence. They have us laughing. Along the hall we can hear the dogs. They can obviously hear the girls talking and they are excited. Can we see Buddy and Bella please. I toddle Along the hall. Bella is actually smiling. They are pleased to hear the kids. Morning Bella Boo, Morning, Buddy Boy, says Alexandra, miss you, the labradors tails start to wag frantically. Grace calls on Frieda the cat. Alexandra asks ‘Granny can you go out the back and say morning to Birdie please’. I go see the beautiful black lionhead rabbit. The girls are ever so happy. Right that’s enough I say, granny is wiped out now. I sit on the seat at the table very happy and blether away . I maybe can’t see them all in the flesh, however a video call like this makes the world worth living. We all chat say what’s been happening and what the plans for the day are.

Both girls had plans to play in gardens. Alexandra said she was going to be drawing and colouring in later. Grace was going to be playing games.

Hold my hand and Smile Each And Everyday

Alexandra drew round her hand in her notebook, she tore out the page. Left the page for me with the drawing. She said I can hold her hand anytime. She said on a FaceTime call to me Granny I would just love to hold your hand everday

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I was so chocked up, it’s difficult to believe Alexandra has just turned 4 years of age.

At this difficult time in this crazy world we need to be grateful for what we have. Make the most folks.

Alexandra and Grace:

Such Kindness over the Easter Weekend

April 14, 2020May 9, 2020 by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome

As we all know and expected this Easter Weekend is somewhat very different. With most of us being in isolation and being asked to stay at home. I expected to feel lonely and miss the activities that I had been expecting to do and the people I was looking forward to seeing. However, there were a few folk that did some very nice act of kindness towards myself, Steve and my labs which made me feel very special, loved and happy. Certainly not lonely at all.

Just before Good Friday, my nurse was in to service my gastrostomy tube and change my dressings. As well as check on my well being, and see how I am doing. As my nurse was leaving that day she left an Easter card for Steve and I and doggie treats for Buddy and Bella – all in a lovely Easter bag.

I got a special FaceTime from my 4 year old granddaughter Alexandra to let me know she had drawn pictures for us. She had done a special rainbow for our window and would post it through our door. Her dad sent a text of her holding the picture. I was so excited to get it. Words cant explain how much we miss seeing her, She usually visits every weekend and when you are used to seeing a grandchild on this regular timing, this lockdown period feels like lifetime. She is my pot of gold at the end of the rainbow. I was in hospital for 12 weeks with sepsis and hardly saw anyone however I felt poorly and had no sense of time on many days. This is different. However, with the technology we have and keeping a positive attitude we can get through this. Chatting on FaceTime and sharing what we have done throughout the day makes me smile, we laugh and sing, I just love my FaceTime time.

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We have had a relaxing Easter weekend. Writing, gardening (for Steve) some tv and lovely quality time together with the labs. I was in the Wetroom putting on my creams when I heard Bella ‘friendly barking’ so I ignored her. Half an hour later I went through to the kitchen to put on my feed. As I reached for the pump I noticed my mobile phone had several notifications. As I sat down to read them, I noticed one was a message from Danielle.

Danielle has been my friend for at least 23 years. We have been through a lot together. I know if I message Danz and ask can you please come here she will come. I have been there for Danielle emotionally and I know she will be there for me. Again I am so grateful for technology so we can chat ad text. So what did the message say? It said. “I’ve left something at your front door xxxx”. What was left?

The most beautiful canvas, of course it is zebras. And cakes for uncle Steve. He will love them. Tonight I will light one of Natalie ’s candles and give her an extra special thought, not that she is ever far rom my mind.

A massive thank you to my special people this weekend, you are what keeps me going. You all know me and what makes me tick. Why, perhaps its because I love you guys let you into my heart and you know what makes me happy.

Why zebra? Neuroendocrine cancer is rare. Zebras are rare. When doctors are getting trained they are told

when you hear hoofbeats.

Look for horses not zebras

Many charities and people with net cancer adopt the zebra as their mascot.

My beautiful rainbow picture all coloured in. Up in my window showing with pride.

Natalie Ann’s Candles

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The Arrival of The Coronavirus

March 30, 2020January 24, 2021 by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome, Uncategorized

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 amazing 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.

First Person with Net Cancer that made me smile :)

March 26, 2020May 10, 2020 by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome

Over 6 years ago I went to an information day hosted by Scotland’s Neuroendocrine Cancer Charity; The Ann Edgar Charitable Trust I went on to go to support meetings every month. There is a group of us that have became friends and a firm support to each other, which is lovely. Some days its good to be able to talk to someone that you know really understands how you feel and you never feel patronised when talking to each other and at times you really need that ‘I know how you feel’ conversation’

The first person I saw at the information day was such a lovely chap and his wife. He was smiling from ear to ear and guiding all participants that were going into the conference. Despite having never meeting the man before you couldn’t help smiling back, he had the kindest gentle smile. He would stretch out his very long arms and direct you into the room. We have became friends very quickly and seen each other at most meetings. There is a nice core number of us that try and get together and blether and spend time together. I have had help organising the tea party and we all went out to the theatre, day out on the barge, a night in my local pub, singing songs and doing magic tricks and said friend getting up and helping out with rope trick – oh boy we had so much fun. Norman was twenty years older than me and called me the youngster. I felt he looked out for me in a way when we sat together, it was his nature. When I organised the tea party, and my goodness what a lot of work went into it, he said, now young lady before we open the doors to the public you get half an hours shut eye. Sometimes he would quietly talk and other times he would stretch his long arms like a giant and bellow what he wanted his audience to hear. Norman’s first words to me were always and how are you today my dear, is life treating you kindly? He would have that big grin on his face and it would warm my heart. Although Norman was his own man, him and his wife came as a pair and they were very much together. One of those most beautiful relationships each partner knows when the other has had enough and needs to leave, when they are tired, hungry etc. They have the best tales to tell from their travels on holiday. They separate across the room and yet communicate with just a glance and before you know it they have made a decision and you are saying cheerio to both of them, see you next time.

This blasted life limiting illness at times imprisons us in our houses, makes one feel so ill you can’t do a thing, medication, hospital appointments, etc become a way of life – however, meeting each other and sharing some of the good and the bad really helps me get on with my journey.

I found out sad news last week, my pal passed away. Norman was diagnosed with neuroendocrine cancer 13 years ago. I feel privileged to have known him and spent time with him and Margaret for the last 6 years. I was diagnosed with carcinoid syndrome 10 years ago, whilst a sad occasion like this leaves one thinking about our own mortality, I count every day as a blessing and am happy with the treatment and care I’m getting from my consultants, doctors and nurses.

Today was Norman’s funeral, unfortunately with the coronavirus the world has gone a little crazy. We are on a lockdown situation and are living under certain restrictions. Funeral services are allowed to go ahead, however are restricted to immediate family. I was able to watch the service on a live podcast. I sat in the comfort of my own home in front of the open fire and watched Norman’s funeral service.

Norman Boe was The First Person with Net Cancer that made me smile 🙂 and I will miss him so very much. Thank you for being my friend.

“Go my friend and enter into eternal joy and peace, dance with angels in eternal light and love”

Warm Welcome in Ellon

March 24, 2020May 10, 2020 by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

As I woke on a bitterly cold February Saturday morning to the sound of my granddaughter’s singing voice I remembered I had something to look forward today. We are making the trip over the Queensferry Crossing, over to Fife, driving up the M90.

For me this is the best week for travelling, Evelyn had been in on Tuesday not only to service my gastrostomy tube but to administer my octreotide. This is a malignant suppressant injection I get every 14 days. It is licensed for every 28 days at maximum dose for people like me with added complications of carcinoid syndrome. My ‘numbers’ are on the high side with my 5hiaa, my symptoms are awful and so we have it – maximum dose every 14 days. The nasty injection is worth it. Fewer visits to the bathroom (reduction from 12 times bowel movements per day to 4) and looking less like a character thats on tour with Ribena Juice Company.

The Our destination is a few miles north of the granite city, Aberdeen. I have visited Aberdeen on numerous occasions. My Grandmother is from this wonderful area of the world and my great aunt after a great deal of travelling finally settled and ended her days in Aberdeen and I have such fond memories of visiting with my Mother as a child, playing in Duthie Park, building sandcastles at the beach. There is so much to do. My most favourite thing alrways a visit to The cathedral church of St Machar

We were travelling up to stay over with relatives, Steve and I are not always the easiest house guests, we both blether at a million miles per hour, talk over one another, and finish each others sentences. We bring an awful lot of luggage, I alone need a suitcase and a holdall for one night’s overnight stay, I have my pump, a lot of medication, syringes etc. I know I have my blog, however we are private folks and there are things we like to keep to ourselves. We very rarely stay with family or friends, we usually book into a hotel however we both felt we would feel comfortable staying with Pauline and Les for our first trip to Arthrath. Located 7 miles north of Ellon.

Pauline sent me a photo of the sign at the end of their road, heading to their house. The road is rough. To me if it was covered in snow it would be more suited to skis than a car, the large ditches in the road resemble the moguls on the ski slopes I have skied, it distinctly reminds me of the white lady I skied on the cairngorms, everywhere you turned there was another mogul to go down. Ah, such happy memories. As we drove down the road to the house the car bounced up and down, in and out of the ditches. I had the feeling I wanted to lift my legs, I could hear my ski race trainer from my youthful days, the wonderful Hanz Kuval, say bend, stick, turn. As the now not so shiny BMW’s wheels dropped into another deep hole. We parked round the back of the house as recommended by our hosts. And so it was so much easier to get in the house, sheltered from the wind, a straight walk from the car across the decking into the porch.

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Where a very warm welcome awaited us. From the minute we walked in the door nothing was too much trouble. Thirty seconds in and the kettle was on. The most beautiful house with comfortable furnishings, welcoming signs of grandchildren; some toys, photographs, canvases, etc that made me feel very much at home, however, gave me a pang in my insides and a yearning to see my beautiful granddaughter. There is an array of animals located in various parts of the house – they are amusing and you feel you want to have a conversation with them. And I most certainly did. Although I’m not sharing any secrets. As I said our hosts were fabulous, they couldn’t do enough for us, coffee, tea, beer and wine on tap. Nibbles to munch on whilst lounging on the sofa and leisurely blethering. A lovely enjoyable afternoon to sit and have a natter, let me get another afternoon feed on pump and a bolus before getting ready to go out for the evening. Pauline is the constant nurse and continually picking up after me, a welcome help and yes you feel safe and secure in her company.

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I go through to our bedroom for the night to get ready, the room is huge, I more than appreciate the space, plenty of room for all my gear. The bed is ever so comfortable with luxurious bedding and the most comfortable plump feather pillows. I was most appreciative of the large ensuite bathroom. It was bigger than most peoples family bathrooms. there was a stand alone bath, toilet, sink and bidet. With plenty of room to move around which is very important to me, especially first thing in the morning when the bones are not quite moving as they should be. The room is so inviting I could climb onto the bed and snuggle in and relax. However, I know I will enjoy the company of my hosts for the evening and get myself ready.

Les did the honours and drove us to Ellon . We were booked into The New Inn Hotel, Ellon for a meal. The hotel was bustling and nearly every table taken. We arrived half an hour earlier than our reservation. The staff greeted us with a warm smile and were very accommodating and set us up a table within a couple of minutes of us arriving. We ordered drinks. Looked at the menu. The delightful waiting staff were very efficient and very soon my three companions were enjoying their evening meal, Steve and Les began with starters which they enjoyed immensely and then fairly quickly the main meal came, our hosts both ate Seabass, my hubby ordered the house burger and I picked at the scampi. We had this delightful waiter that looked latin, he was tall dark and handsome. Most of the evening Pauline and I teased him, as we ordered our desserts we asked where he came from since we thought he had an unusual accent. He told us he was from Peterhead, Oh we thought you were from somewhere like Italy we said in disappointed voices, you are a “Peterhedien” oh what fun we had. The desserts arrived, and yes, naughty me had some, I had a little eton mess. And yes it was worth having. Steve had the cheese cake. A nice touch on top of the cheesecake is scottish tablet. We all enjoyed the food, the service was excellent. Would I go again. Certainly would.

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On leaving the hotel we went a short walk across the car park to a friendly pub, The Tolbooth Pub, Ellon. As I walked in I soaked in the atmosphere; it was warm and friendly. It was busy with a variety of ages of folks. Sitting up at the bar stools were a group of ‘middle aged ‘ folks. At various tables were various people, as were in the lovely booths. We made our way to a table beside one of Les and Pauline’s friends. In one of the booths were five young lads, I’d say in their early twenties. They looked happy and were sitting blethering and laughing, next thing they started singing The northern lights of Aberdeen. I felt my heart pang, it was a song sang to me by my Mother, one we would sing together. They sang, when they got to the last line Pauline and I sang along “To my home in Aberdeen” I could feel the tears, however happy tears. I turned and looked over to the lads at the booth the young chap with the curly hair lifted his whisky glass in my direction, gave a wink and a cheeky smile – made my night.

On returning to the house Pauline and Les looked after us, we chatted into the small hours of the morning and before we knew it, 3am hit the clock.

I woke on Sunday to my FaceTime call with my 4 year old granddaughter, Alexandra, we had a wonderful discussion. Her first words of the conversation were you are coming home today and final words were I love you…. lots of stories in between.

At 10.30am we went to visit Steve’s auntie Margaret in Aberdeen before going out for lunch at The Cove Bay Hotel . There were 11 of us for lunch. And what a great lunch it was. It was so lovely to spend some time with Steve’s cousins and have time for a catch up and a blether. We had a table by the window with a beautiful view of the sea. Auntie Margaret and I were right by the radiator, we were toastie.

After lunch Steve and I made our way back to East Lothian. We had a quiet drive home. It didn’t too long at all. It was lovely to see our cottage. Spent a relaxing evening with our dogs at our feet.

A massive thank you to Pauline and Les for introducing us to Arthrath. And making us feel ever so welcome and not like visitors at all.

Big thank you for The Warm Welcome in Ellon

Hurrah 😀 For Dunedin Chapter

February 5, 2020February 5, 2020 by Lizbeth, posted in Nets/carcinoid Syndrome

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

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

Net Cancer Day

November 14, 2019May 10, 2020 by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

Yesterday was November 10th. On the Cancer Calendar this is World Net Cancer Day. In Edinburgh the Scottish Charity, The Ann Edgar Charitable Trust hosted a forum at The Novahotel. And what a great informative event it was.

After being offered a beautiful buffet lunch, chance to meet other patients and folk interested in nets David Drummond, chairman and partner of the late Ann Edgar opened the show with a warm welcome. We were then given presentations from great speakers:

NET specialists from throughout the UK gave up their Sunday to give presentations. Offered their expertise and answered questions to patients, families, friends and people generally interested in NETS.

Margaret Boe – The Ann Edgar Charitable Trust (TAECT) . Trustee and wife of Net Cancer Patient, Norman Boe. Margaret is retiring and handing over the baton to Priscilla Fernandez.

Katie Gibson – NET CNS at Western General Hospital, Edinburgh, Talking about patient and carer support in Scotland

Lucy Dornan – NET CNS at Beatson Oncology, Glasgow. Talking about PRRT programme in Scotland.

Nikki Jervis – NET Patient Foundation. Talking about patient wellbeing.

Professor Mark Strachan – Endocrinologist, Net Specialist, Western General Hospital, Edinburgh. Talking about whats new in NETs.

Dr Lucy Wall – Clinical Oncologist, Western General Hospital, Edinburgh. Vitamin Research Project. Results to be presented in UKINETs.

Mark Strachan and Lucy Wall set up the first NET clinic in Edinburgh 14 years ago. Fourteen years since the first Net patient walked through the doors, with a great deal of progression since then. All for the good of course.

On the way to the event I had a sneaky look at my smart phone. An Apple I Phone – I have stayed loyal to Apple, the great Steve Jobs lost his battle with NET Cancer in October 2011. As I looked at my twitter feed I saw my friend Kath had promoted awareness of the disease in her local paper. Well done girl. I can relate to the piece so well, as I am sure many people with a NET diagnosis can . If you would like to read Kath’s feature please click on the link

https://www.stokesentinel.co.uk/news/stoke-on-trent-news/i-feel-like-im-sitting-3517787?fbclid=IwAR2HyssDuZs9hekMPjfDhlcWDtzBIlf5KBA9TSTgdt3IfXXD40-RunU9K3Q

On entering the hotel I turned my phone off, no interruptions. However, at the coffee break I turned on my phone. A couple of messages. From each of my sons. Both checking up on their old folks and letting us know they are doing ok. One of the texts came with a photo of Granddaughter, Alexandra – she found her Daddy’s scalextric at our house and was loving playing with it. Knowing our boys were thinking of us warmed my heart.

As we were packing up to leave we got in the car and I turned my phone back on. Stuart and Alexandra called to say Alexandra was going back home and we would see here Thursday. Her Wee voice echoed in our car can you hear me Granny? When I let know I could she blethered away. She said I helped my Daddy put your lights up – they are very bright. Then she said I love you Granny and I love you papa see you after nursery xxxx

10th November Approaching……

November 7, 2019 by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

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

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

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

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

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

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

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