Our house is usually always full of chatter. We have the uncanny skill of speaking and listening at the same time. Grandchildren and labradors bring much needed laughter. They are my essential sunshine on a rainy day. Most definitely turn my frown upside down and oh yes help me smile each and every day. I can always say what great fun granddaughter’s can bring.
If you were to add the age up of the three of them you only reach the ripe old age of nearly 12. Firstly there is Alexandra. She is the eldest at just turned 6, Ellie comes second at 5 years of age and Luna will be 2 at the end of the month. The girls all play so well together, shrieking up and down our hall. Running around the garden. Playing with the garden toys or walking the labradors in the back field together with me, all of us singing and chatting away. The last time the girls were playing together they went to Vogrie Country Park and what fun they had.
Individually they all like to come play at ours too, get some grandparent time. Bake cakes, do some arts and crafts, play games, garden with Granny, clean the Harley-Davidson with Papa and they most certainly love getting in the Wetroom and having a long shower, playing water games, singing at the top of their voices. We all love to go walking with Buddy and Bella my Labrador retrievers. Our back field is ideal, a wonderful safe environment for both dogs and children. Or go to unleashed Dog Park at Pencaitland and enjoy some fun.
It can be the darkest day, you could feel at your lowest ebb and these little cherubs will cheer you up no end. Melt your heart on the coldest day and yes oh yes they can all talk. Proper little chatterboxes.
This Easter weekend was particularly lovely. Alexandra helped Granny put some stickers on the window. Girls helping Papa with the ride on mower. Then oh so much fun hunting for some eggs.
Undoubtedly grandchildren fill a hole in your heart you did not know existed. For this reason I would recommend them to anyone.
Life for everyone can be challenging. We all find the hum drum of daily living difficult at some point in our lives. When I was studying at university right out of high school gosh I thought life was difficult, when in fact it was actually pretty easy and straightforward. A lot of water has gone under the bridge since then my goodness. I’m married, have children, grandchildren, have enjoyed happy times, went through some sad experiences, proudly gained my PhD, and most definitely feel loved. I feel I was brought up fairly well and I have a glass full attitude to life and always try and look on the bright side. On meeting someone for the first time I treat them as a genius and work backwards and always have a “book and cover policy” – you never know what goes on behind closed doors or what is hiding behind that lovely smile. Although I am fairly level headed human and like the lion I am feel I can deal with anything, nothing prepared me for the day I went into the consultation room to be told I had carcinoid syndrome and it was incurable. Am I angry at the carcinoid syndrome diagnosis?
When I heard the words incurable, I first felt like I hit a brick wall. My stomach churned, after a few moments of the conversation with the consultant that day the remainIng words were not communicating with my ears and the journey home was a blur. But as time went on, getting medical treatments, ongoing management of my incurable condition. Surgery to get a gastrostomy feed. I decided to use my writing to promote awareness of Net cancer and carcinoid syndrome. I find writing helps me get through the day, it helps me relax, encourages me to take photographs, I read about other subjects. All in all, my mind gets flooded with new information and I totally enjoy being creative looking at life from a different angle. I found a way to deal with my illness. At first yes I felt rather upset and confused now I am not annoyed or angry at all. I believe getting a diagnosis has given me the coping mechanism; it has made me the person I am today. I have learnt what is important, especially things like keeping in touch with people, showing emotion and saying I love you.
Nearing the end of March and we have sprung forward for daylight saving. Lost an hour in our bed did that cause any upset. Gosh no, woke up to a beautiful sunny Sunday morning, the fresh dew glistening on the blades of grass as I drew back the curtains. Six year old granddaughter Alexandra was getting her breakfast then off to dance. She attends a dance class every Sunday which she absolutely loves. For later in the day when she was back at ours it was arranged that we would go out on an adventure. This would include a drive to a Forrest Park and then there would be Frogs, nest building and watching by the pond.
My sister Hazel and her Granddaughter Lily came to mine and picked up Alexandra and me. We travelled the scenic route from our home in Boggs Holdings, Pencaitland to Glentress, Peebles in The Scottish Borders. We headed along familiar roads, up the granite hills, driving up the hills straight through the golf course in Innerleithen. Looking out the window at sheep and their newly born lambs dancing around the bushes.
As we approached the Glentress Centre we drove through the well sign posted road to the upper car park. Got out the car. And went on an adventure. Tummy’s were rumbling, so first of all it was time to feed the girls at Glentress Peel Cafe – this was a super place to have something to eat. Catering for all, adults, children, decent enough vegetarian option and dog friendly. Beautiful outlook with a pond just outside.
The pond was a great attraction. Alexandra and Lily excitedly watched the frogs swimming. Eagerly took in all the pond had to offer including frog spawn, insects galore and many plants. I have to admit I was in my element sitting on the bank watching and taking photographs.
We took the steady incline back up to the car park. The girls ran around laughing and playing catch. Alexandra collected a fairly large stone, the girls went on in search for moss and they started nest building. The Ranger walked by and smiled. A few minutes later she came back, as we were sitting at the picnic table she presented the girls with activity sheets and coloured pencils. She said well done on their nest building.
As the girls sat and drew pictures and coloured in I took in the breathtaking view. Watched some mountain bikers. And looked out onto the hills with the Glentress Forest Lodges that are available to rent. With the thought that one weekend that would be a lovely stay for a night or three.
All in all what a great way to spend a few hours on a Sunday.
How on earth did that happen? Where has time gone? My shining light, dependable caring compassionate granddaughter is a whole six years old. Wow! Alexandra is a crazy funny girl who makes me laugh and always has my back. Chattering away playing at ours, rattling the keys on the keyboard together with me as I write she is the most wonderful company. Since she turned 6 months old she has been coming to our place, for an afternoon, then an overnight, now its for whenever the need is there or she wants to come and stay. Our home is her home just as it should be for grandchildren. On her birthday she came to ours in the afternoon to blow out her candles on her birthday cake – let us celebrate because our beautiful box troll has turned six.
As a family we enjoy spending time together. At our home, it may involve cutting the grass on the lawn tractor. Going on holiday together, or to an event. Out for a walk with the dogs – my precious labradors. And most definitely celebrating a birthday like this one. It doesn’t have to be a big affair, just who matters sitting on the sofa singing happy birthday. It’s been a funny old time especially for a child of late with the pandemic, isolation and face masks, no birthday parties. However the most important thing has never left – love. Knowing that we are loved we can get through anything.
Our 6 year old sunshine girl Alexandra turned 6 – my I blinked my eye and she has grown……….
As treatments are started we struggle to find enough time. The patient population exists, it is hoped that awareness is increased of individuals, families and friends. The one thing that is always the upmost priority is health. For medical science to progress, people to get better treatments, hopefully find cures or at least a better or longer life span for a debilitating health chronic disease. We need to conduct gene therapy programs or clinical trials. Clinical tests give people hope; delivering the right information and having an impact on quality of life. Some clinical trials have placebos. what’s the cost of a placebo?
A great number of participants feel valued when working together in gene therapy programs and clinical trials. On asking some patients that have taken part in trials they have said “being part of a trial was a real privilege”
Some programs/trials are the first and only one of their kind. Where there is no cure, only treatment available.
One patient who has an extremely rare disease and is also a charity trustee said ” being part of the trial is important, not only does it make my life better but it can help with the lives of others. People with the same condition can benefit. As a trustee, I hope to encourage other patients to take part, offer advice and information”
Trials come in all shapes and sizes. Run for varying lengths and need differing amounts of volunteers. However they all need to have rules, legislation, outcomes, statistics. It is extremely important the trials are carefully monitored and measured. We get accurate results and truthful information. This determines whether the trial is a success or not. Did it work? Was the drug getting to the target? On setting up the trial decisions have to be made how is has to be run. Yes people have to get recruited. At times recruitment can be rather difficult and challenging. Even before the trial there are usually pre trial health examinations. With a disease such as Motor Neurones Disease (MND) only 10% of people diagnosed with the condition are eligible for for many trials. Many clinicians, scientists, etc would love to try and reduce the burden in clinical trials. It is essential in all trials that we have all patients working in the right protocol. Working in partnership; researchers and patients working together trying to deliver better clinical trials.
In setting up the trial one of the questions for the researchers – placebo or active compound?
When a trial is running and people are depending on the outcome of this trial. They are more often than not willing the trial to have a positive result. Wanting it to be a success and the drug to be able to treat the medical condition. There are a great number of people taking part in the trial that are disappointed that they received a placebo. Some would rather there were other ways than having a placebo in the trial, such as the gold standard.
Something we have to remember is the world is small. We all talk. We need support. We find our own no matter how far…… In this day of technology especially we can chat on the telephone, share information on social media, computers, visit different countries, etc, etc. Charities and groups get together and encourage patients to talk and they get to know one another so no matter what country they live in, the language barrier, how far away they are from each other – they still communicate. They will know if a fellow patient is going on a trial, or if they take sick or devastatingly if they die. Families will always talk. If a trial takes place and a patient is in the trial someone will tell someone else, good or bad news will travel.
There are issues around placebos. Most people that have been asked answered saying they would rather have the drug than the placebo. In a discussion one person commented and said he was fairly confident researchers would not want to give their children placebos in clinical trials if their child had a life threatening disease. What you have to ask yourself is could you live with yourself if you had 10 very sick children, 6 drugs and 4 placebos, they go into a clinical trial. The trial works. The drug cures the or gives the children a longer life span. the other 4 – get nothing out of it. Six months after the trial you hear that one of the children has died. Would you as the researcher conducting your next clinical trial have placebos in the clinical trial?
It’s Monday morning like no other for most people. As I look out of my south facing cottage window I see grey clouds circling above the Lammermuir hills, on first glance its a bleak outlook. My telephone rings and anyone that knows me will guess that I am then preoccupied for at least an hour. Back to what I enjoy; I greedily set up my three apple devices with devoted labradors at my feet. As I lift my head to pick up a book I looked out of my ‘favourite view’ window. Was that a glimmer of sunshine trying to get through? As Bob Hope once said about Scotland it’s the only country he ever came to where he experienced 4 seasons not just in one day but in one hour. My yes, it was the clouds had lightened and the sun was beginning to show face. What looked like was going to be a rainy cold blustery day was turning out to be a fine day, perhaps not the best however one with promise and prospects, what more can you ask. Today is Monday 28th February 2022, today is Rare Disease Day.
I like to believe that the future for Rare Disease is parallel to today’s weather. One with good prospects and promise with a ray of sunshine to keep that frown upside down and remind us to smile each and everyday.
Living with a rare disease for most affects not only the person with the disease but those around them, whether they are family, friends or work colleagues. On getting a diagnosis, for many it is a life changing situation. Living with or getting diagnosed can be extremely hard to live with; physically, emotionally and financially. Some only get a very short life span. Others have many years of life and have to learn to manage. One big thing in common is many rare diseases are chronic. It isn’t always easy admitting you find life a struggle. However there are charities, hospital groups, clubs, various volunteer groups, etc and great deal of people affected benefit from support organisations; someone to talk to, somewhere that really understands, respite, etc, etc.
So what is a rare disease? 1 in 17 of us world wide will be affected by a rare disease at some time in our life. Carcinoid Syndrome is one of them. Huntington’s Disease,is a rare disease another is Cystic Fibrosis. The majority of rare diseases are chronic, progressive and genetic not curable. Only manageable to an extent. Living with a rare disease can feel very isolating and scary. Globally between 3.5% and 5.9% of the world population is affected with a rare disease. There are six thousand different diseases affecting 300 million people. In the UK, it is estimated that there are 3.5 million people affected by a rare disease.
Many patients with rare disease’s consult with more than one specialist. Often as many as five. Going to various outpatient clinics can take its toll not only on the patient but on the people around. The care at the hospital in the UK is free yes, however the patient has to get to the hospital for treatment, blood tests, scans, etc. Fuel in transport, or cost of public transport, the cost of eating out, etc etc. Then there is the physical cost to the patient. I was speaking with a consultant the other day and she spoke rather concerned that one of her young patients said she had 52 clinic appointments in the year. Equating to one per week. Yes she has an incurable rare disease, however she is also a student, desperate to pass her exams. The doctor sounded genuinely concerned for her patient; saying she thought this could affect the patient’s wellbeing on top of their condition.
What is Rare Disease Day? This is a world wide event for one day – always the last day in February. Celebrating Rare Disease’s. Promoting awareness. Sharing videos and experiences across the world. The aim of the day is to raise awareness, spread hope and solidarity and bring the worldwide community together. Hoping to improve access to treatment and medical representation for people and those affected with rare diseases.
It is go good to see so many people pull together for such an event globally. When these people are at home feeling isolated or trying to go out and are anxious they need to get their “big person” pants on. Life can be so difficult and cruel. It’s heartening to see so many people affected by rare diseases with glass half full attitudes. Medical staff fully behind them and organisations supporting in what needs done. Let’s hope for the day that we can get some treatment and you never know maybe even a cure for some of the diseases. However, for now let us manage the best we can.
Most people in life know someone with cancer. Or are knowledgable about signs or symptoms of some kind of cancer. However the rarer less known conditions need the help of Doctors, writers, patients, etc to promote awareness to get their name out there and help others know what to look for. “Doctors are taught ‘when you hear hoofbeats, think horses not zebras,’ meaning a doctor should first think about what is a more common and potentially more likely—diagnosis. In oncology zebras have to be thought about. If a clinician isn’t as familiar with rare conditions, they may spend too much time looking for the proverbial horses. One such rare disease is Neuroendocrine Cancer and carcinoid syndrome. November 10th is Net Cancer Day. For the patient and the diagnosis it is all so important for the doctor in the big important Think zebra not horse.
Getting a diagnosis of Net Cancer can be difficult. It often goes misdiagnosed and the diagnosis is delayed and very often a person is told they have the cancer once it has spread to other organs and is incurable.
Living with Nets and carcinoid syndrome isn’t always easy. There are days it can really take over your life and just getting out of bed is a real struggle. However, there are great treatments and support networks out there to help you on your way. Looking after your body, eating the right things, meeting up with people and talking can all help in your cancer journey. I certainly know meeting up with likeminded people from The Ann Edgar Charitable Trust and sharing experiences has been a lifesaver. Making super friends along the way, the only down side is losing some dear ones to this damn condition.
On this eve of Net Cancer Day I think of the amazing buddies I have made since the day I was told I had carcinoid syndrome. I keep up with and chat to friends we share what’s going on in our medical life. I have lost and miss some lovely zebra, including Ann, Didi, Pam, Janny, Margaret, Becky, Norman, Linda. Celebrity zebra have included Audrey Hepburn,Steve Jobs, Aretha Franklin.
Audrey Hepburn’s son did a newspaper interview – you can view it HERE
Common symptoms of NETs include:
Flushing (redness, warmth) in the face or neck without sweating.
Diarrhea, including at nighttime.
Shortness of breath, rapid heartbeat/palpitations.
High blood pressure.
Abdominal pain, cramping, feeling of fullness.
Unexplained weight gain or loss.
The symptoms of a neuroendocrine tumour depend on where in the body it is and what hormones it produces.
Diagnosing neuroendocrine tumours
Many tests can be used to diagnose neuroendocrine tumours, including blood tests, urine tests, scans and a biopsy (where a small tissue sample is taken for closer examination).
octreotide scans – where slightly radioactive liquid is injected into your veins and a special camera is used to highlight any cancerous cells
Treating Net Cancer and Carcinoid Syndrome
Every patient has their treatment plan tailor-made for them. No one person is exactly the same. They may have the same germ cell. Could have been diagnosed with almost literally the same diagnosis – it does not mean the treatment will be the same. All our bodies react differently, we give off different hormones, etc. And to be honest we may not have the same attitude to the consultants conversation in the room.
For some people surgery is an option.
Somatostatin Analogues – may be used to help control the secretion of hormones if abnormal levels are being produced
Embolisation – Treatment that blocks the blood supplyusing chemotherapy, radiotherapy or radiofrequency ablation
Treatments used for some Inoperable and metastatic cancer:
Everolimus is taken as a tablet, sunitinib is taken as a capsule and lutetium is given into a vein.
Over the last few months life has certainly had its up and downs. As usual getting the usual carcinoid syndrome treatment. Not feeling the best at times and all that comes with it. However on the plus note covid restrictions have been a lot better, I have seen my family much more, Steve has been on the Harley-Davison®. We managed an evening out to see Del Amitri live in Edinburgh, at the Queens Hall. Our youngest son graduated from university. I got head hunted for a job from a very reputable company. We have a lot to be grateful for. As I was sitting working on my computer my phone gave a familiar bing. I looked over, it was letting me know my screen time was down. Most likely because I have been writing more this week, and I have gave the social media platform Facebook a wider berth over the last few weeks; mainly due to seeing the same old…… Although I have to confess I did see a few things on it today that made me smile, and other things that put me off…… on reading down the page I thought what has made me smile today?
Firstly waking up and being alive makes me smile. Every day is a bonus. I love where I live and who I live with. I open the curtains, roll up the blind in the morning, look out my bedroom window and the view of my back garden is a huge field where I enjoy walking my loyal Labrador Retrievers.
My boy Buddy is my assistance dog. He takes great care of me. Knows when my glucose levels drop. When my heart is misbehaving. He was such a great chap and tapped my nurse on the knee on Wednesday when she was attending to me, I asked her to check her blood sugar level it was sitting at 3.9 – he knew she was hungry.
My family not only make me smile they make me laugh. We have fabulous times together. Play old fashioned games, sit and talk, sing together, dance in the house and most importantly love each other.
Writing keeps me sane as well as makes me smile. Jotting down in a diary, keeping a journal, and writing for a living. I simply love it.
Listening to music most definitely made me smile today. Whether it is music on Apple Music, reminiscing about times gone by, Steve strumming his Martin guitar and beautifully singing along or Alexandra practicing her heart out on the violin or getting a guitar lesson from her Grandad. All those tunes give me such a warm feeling inside. It made me remember about that time……well will keep this one to myself…….
Remembering yesterday, listening to stories about the trip out pumpkin picking and dancing around the house and face painting.
It was the bank holiday weekend and the sun was shining. For more than a year I could only fantasise of meeting up with friends or going out to events with fairly large numbers. The run up to the weekend was fairly difficult, my gastrostomy site was leaking, the pain set in and my skin became red raw. By Wednesday, treatment day with my nurses I was needing a swab taken and had a bit of a temperature. GP phoned me at 7.45am on Thursday morning to let me know antibiotics were ready for me. Woo hoo, what kind of person gets excited about antibiotics. One that wants to feel better. This weekend would normally be TITG® – our annual bike rally hosted by The Dunedin Chapter in Aviemore however it was cancelled due to Covid. Fortunately there was still time for fun and an alternative weekend in store for us down here in East Lothian. It still included some time with some Chapter members and the Harley – on Sunday I had a grand day out at Newhailes House.
As Alexandra and I arrived at Musselburgh the honest toon was looking very busy. Families walking in the direction of the estate of Newhailes House. This Sunday was a special day, there was an open day inviting members of the public. It was mainly a classic car event, with other super side lines. Dunedin had the Harley-Davidson® motorcycles, there were some sports bikes too, the fire brigade were there, the police, a fantastic array of stalls, and of course amazing classic cars. Plenty to keep us occupied.
As we walked into the grounds of the estate we could hear a very familiar sound. The roar of her Grandfather’s Fatboy. Parked in a line – the Dunedin Chapter Members and their Harley Davidson® Motorcycles. There was an eager bunch of kids waiting to sit on the bikes, lots of smiling faces. As we walked up towards Fattie we saw Steve giving a demonstration to a happy lad.
Alex and I walked round, thoroughly enjoyed the sights. Totally loved the cars, bikes, stalls, etc. Soaked in the atmosphere. Sat on motorbikes, looked at beautiful classic cars, clambered on tractors, enthusiastically stood in the long queue for the sit in the fire engine. We had a fabulous day all on our doorstep. I’m sure the Dunedin members enjoyed their day.
My first memory of London; I am 11 years of age and in London with my Mum and Dad, we are passing a lamppost with ER printed on. Dad says “Biscuits look at that Elizabeth Reigns, you work hard sweetheart and you can be a boss too” My folks always gave me the encouragement and love needed to go forward in life. They helped me feel safe and secure. In 2012 I took the train with my hubby to London, this time not for a holiday but to see the expert Professor Caplin at The Royal Free. Despite needing diagnostic tests and treatment for incurable stage 4 neuroendocrine cancer and carcinoid syndrome Steve and I found time to explore new avenues. See museums, art galleries, The Tower, take in a show. One thing I am most certain of London, the city that keeps me alive more ways than one is my most favourite city.
Since 2012 I have been and continue to travel up and down the train tracks between Edinburgh and London. Had countless appointments with the Prof, attending clinics, grateful for but not particularly enjoying gallium pet scans, various treatments, glowing like the Readybrek kid, setting of alarms here there and everywhere, and many many blood samples on ice and some taken in special light conditions and immediately put in a Black bag. So tired that when I escape from the delightful cancer team we go to the West End show – We Will Rock You. A musical I have wanted to see for some time, the first half I sit, smile and sing along, the second I sleep right through, with the audience loving the show, singing at the top of their voices. The staff at the UCL Hospital and The Royal Free in London have been outstanding and for that I thank them from the bottom of my heart.
The last year we have had a year of corona, crisis and challenges. But let us not forget that the breakthrough of the vaccine has allowed us to start to come out of lockdown and find some sort of normality, try our best to get back to work, start socialising and enjoy life.
July 2021 we decided not to go to London tandem but to go with my sister Hazel and her husband Alan. The boys rode the Harley-Davidson® motorcycles down and Hazel and I took the train first class from Edinburgh to London Kings Cross. I have always wanted to ride pillion over Tower Bridge. As well as having a fabulous 4 days Finally got my wish. Riding over Tower Bridge was as good as I expected, it was very busy, both lanes used, cyclists going as fast as us. Beautiful red double deckers travelling along with smiling faces looking over the Thames. Black cabs going no where fast. All of us sitting in the two lanes travelling along at 10 miles per hour, superb for me as a pillion taking in the view, people watching, loving the sights. Gathering my thoughts.
We crammed in what we wanted to do, Steve and I have done lots before including The Tower, The British Museum, various parks and lots more. This trip was to be relaxing, however there were a few places we wanted to tick the boxes. Namely Ace Cafe, The Bike Shed and Warrs Harley-Davidson®
Friday morning we gathered our bearings had a doddle around on foot, enjoyed some squares such as Russell and Tavistock Square, walked through St James’s Park, had lunch at The Hard Rock Cafe, Picaddily Circus, saw some of the sights on foot and then took a taxi back to the hotel looking forward to Friday night on the bikes.
We teamed up with our Sena Communication kits and rode the Harley’s up to Ace Cafe on Friday night. Friday night is bike night. Oh boy what a fabulous evening it was. There were car park Marshalls when we arrived, 20 minutes later I could see why. The entire car park was full of bikes. I’ve got to say anyone we spoke to was so welcoming and friendly. We first off hooked up with 4 young lads with Harleys. They don’t belong any Chapter, just friends riding their bikes. Went into the cafe for a cola and a scout around the shop. Came out and if possible it was busier than before. A familiar Harley fist bump came my way from Gerry; a member of The III Rivers Chapter, there were two members together, they welcomed us into their abode; great guys. Looking out onto the road there were motorcyclists doing wheelies up and down the road, burning tyres. Revving their engines, screaming up and down. So loud, vibrant and exciting. Gosh it makes a girl’s heart fair beat. One of the highlights of the evening was the calm Great Dane in the sidecar, sitting watching all going on taking in everything. What an unforgettable night.
Saturday we took the bikes for a tour of London, did what I’ve always wanted and rode over Tower Bridge, drove through Marble Arch, passed St James Park, Covent Garden. We followed our Harley-Davidson® noses to London’s Dealership Warrs. The Dealership is fabulous, as well as great bikes, superb range of accessories and clothing, they have a museum including Evel Kineval’s bike. Not to mention their very helpful outstanding staff; Holly and Edwardo. They sponsor the HOG Chapter Chelsea and Fulham. We met a lovely Chelsea and Fulham Chapter member at Warrs : Steve. He came with us for a tourist ride round London. Then the five of us went to the amazing Bike Shed, terrific experience from start to finish. As we arrived we were shown where to park, the great think is you can ride the bikes right in and ride passed tables as folks have a drink. Undercover safe parking, so secure you can leave your helmet on the seat of your bike. The staff warmly greeted us, we were an hour early, she asked if we could be fitted in would be like an earlier table – hell yes! We toddled the dozen steps to the shop, treated ourselves to a t shirt and some patches for our cuts, had a good look round, amazing bikes. There is a barber shop too. Our table was ready and the food did not disappoint.
As always I enjoyed my time in the big city. Our final evening after packing and getting organised we ventured round to quiet Bloomsbury for a cocktail.