Tag: cancer blog

Clinical Trials: what’s the cost of a placebo?

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

What’s the cost of a placebo?

Dr Elizabeth M Johnston-Young

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?

Today is rare disease day

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

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.

Think zebra not horse

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

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.
  • Fatigue, weakness.
  • Abdominal pain, cramping, feeling of fullness.
  • Unexplained weight gain or loss.
  • Wheezing, coughing

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).

Types of scans used include:

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.

Treatments Include:

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 supply using 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.

Let’s Talk About Nets

What has made me smile today?

by Lizbeth, posted in Emotions, Nets/carcinoid Syndrome, Uncategorized

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.

Buddy sitting at the front door

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.

Has anything made you smile today?

A grand day out at Newhailes House

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

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.

Alexandra loves this tractor

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.



Element of Trust

by Lizbeth, posted in Emotions

From as long as I can remember my parents encouraged me to listen to others and always speak up to others and tell the truth no matter what has gone on. I have always taken this with me, passed this on to my children; said to them whatever has happened just tell me and we will deal with it. This has I believe gave us a trustworthy bond between parent and child no matter what their age. My lads are in their 30’s and we still talk, I trust them and they trust me. Growing up I knew I could go to my parents and talk to them about anything and everything, I always knew whatever I said to my Mum or Dad it would go no further. They were full of fabulous advice, helped me transform from teenager to adult. Who do I talk to now? I chat to a couple of friends about everything and anything, one in particular we know we can discuss ‘our laundry’ with each other. However, my ultimate bounce off and discussion partner is my hubby Steve, we are partners in life, super friends, chat about all and sundry and most importantly there is that Element of Trust

Steve and Me

So what is trust? I believe it is when someone can be relied on. Their honesty and integrity shines through. If I trust someone it means I believe they are who they say they are and they will always do what they say they will do. Most importantly what comes out of their mouth or from their written hand is the truth. They will not lie to me.

I pride myself in having a fabulous circle of friends, a beautiful family and most certainly a very close knit few that I value and trust with my life. Recently I have been disappointed with acquaintances. When I got told a lie from someone I actually never thought I would. That kick in the shins fairly knocked the stuffing out of me for several reasons………

There have been people in my life recently that have been irritable, non trustworthy, tit tattling to other people. These reprobates aren’t worth worrying about.

Building up trust: has not always made me popular but I’m a believer in say what you mean and mean what you say. Give people the benefit of the doubt. Remember the role of respect.

I have counted my blessings. Enjoyed being with friends and family. And relished that special time with my most loyal trustworthy labradors, Buddy and Bella; now they could teach a few humans a thing or two.

Buddy & Bella walk with steve
Bella & Buddy help steve

So for me, trust is important, especially in building up relationships. For those who know me, I’m a very happy honest human who enjoys life. Every day is precious and I am continuing to enjoy life with my beautiful family. On Saturday Steve took time from his busy business we spent a precious day together, Steve did a wonderful job gardening, Bella watching every step. Sunday we both took an amazing trip on Fattie our Harley-Davidson® to Moffat, St Mary’s Loch and Peebles with some friends. Sunday; beautiful scenery, lovely weather and great friends; a fabulous recipe for an amazing day out. Just the tonic to end the week.

Talking about nutrition

by Lizbeth, posted in Uncategorized

Over the last year I have been missing out in meeting up with chums and support network at net cancer support meetings organised by TAECT We have however had zoom meetings. Had a chance to chat and share a story or two over the internet. Our last meeting we had a guest specialist. The zoom meeting was different this time it was a question and answer session with dietician/nutritionist, Tara Whyand specialising in net cancer and carcinoid syndrome. On a Wednesday evening we were talking about nutrition

The zoom meeting was very well attended with a great variety of questions. It was informative and interesting. Living with a peg feed you may wonder why I want to take part in the discussion. Primarily because I miss my chums and want to see familiar faces. I physically miss seeing the friends I’ve made through the group, including Barbara, Margaret, the two Alistairs, Muriel & Eric, David & Isobel. It feels like a lifetime ago that we were all together in Pencaitland bowling club at the Tea Party I pulled together and the music night. Not only raising money for Scotland’s Net Cancer Charity but promoting awareness of the cancer and making new friends. Pre Covid we would meet up physically these meetings would be called Net Natter Meetings. Things have to change slightly for now and technology is fabulous letting us all join in and natter together.

It may seem strange that someone like myself with a gastrostomy tube attends a nutrition chat. However, I found it great. Tara mentioned one of the most bothersome symptom; diarrhea. We discussed this. Spoke about flushing. Also pellagra. We discussed taking supplements such as creon and vitamin B. All in all it was very informative and helpful. I’m sure everyone got a lot out of it.

As the covid vaccine has been rolled out and the restrictions are getting lifted I hope we will be meeting up soon and we can start to have regular Net Natter Meetings again.

Give to charity without costing me a penny

by Lizbeth, posted in Uncategorized

Since the day my consultant told me I had to give up driving my online shopping has increased tenfold. I purchase my weekly grocery shop online. The Sainsbury’s van could drive its way to our cottage on its own I’m sure. I have to admit I purchase nearly everything online, and from everywhere. I was so happy when I found out I was able to shop and give to charity without costing me a penny.

As most of my regular blog readers know I regularly attend Net natter support meetings with The Ann Edgar Charitable Trust. (TAECT) Scotland’s Neuroendocrine Cancer Charity. They are an invaluable support network as well as offer information days and zoom meetings. I got an email from TAECT letting me know that they had registered with Amazon Smile and Give as You Live.

So me being me, an avid online shopper and a huge supporter of TAECT started going onto Amazon Smile rather than my regular Amazon. I shop on Amazon frequently. I am an Amazon Prime customer and purchase several items per week. So thought it best to support the Charity. All I do is make a purchase as normal, pay the price like usual. The charity gets 0.5% of the sales every time I shop at no cost to me.

I then decided to register for Give a you live, its so simple. Register for free, and then shop online to different retailers. The retailer donates a percentage of sales to the charity. Its that simple. Companies that participate include, John Lewis, B & Q, Dunelm, H & M, Argos, Marks & Spencers, Pets at Home, Screwfix, Ebay, plus many many more. In only one week, I have shopped in John Lewis, Dunelm and Boden. £7.71 has been donated to charity without costing me any extra money.

Both schemes are a wonderful way to donate money to charity, there are a great deal of charities to choose from and many on your doorstep. All without leaving your arm chair and only for the cost of. the goods. Its a win win situation.

You can have a look at smile Amazon here. And Give as you live here. I’m sure you will agree they are both fabulous ways to help the income of charities.

So the next time you are going on Amazon to shop, instead of the regular Amazon, go on Amazon Smile. Register a charity and donate 0.5% every time you shop. If you are buying a gift for someone, treating yourself to something, getting a much needed product for the house, go through give as you live and donate a percentage to charity. It really is that simple and no extra cost to you at all.

A comfortable place to die

by Lizbeth, posted in Uncategorized

As I have grown older I have came to realise that there aren’t many guarantees in life. The only certainties in life are birth,death and change. We are born, changes take place and we die. To make things more pleasant all round and something we take for granted in the United Kingdom is that we will always have somewhere to go when we are sick. Get taken care of free of charge and when the inevitable happens are granted A comfortable place to die.

When a person is faced with a terminal illness, at some point thoughts come racing in to the mind where do you want to spend the last days. People’s answers are very personal ones. For some being at home and spending every last possible moment being cared for in the family home is their wish. Others prefer to be cared for in a hospice or hospital environment. Either way, the experience I have witnessed personally the care given has always been outstanding. The nursing staff making sure in the last weeks, days and right down to moments comfort is paramount.

There is no getting away from it making a choice where you want to end your days is far from easy. There is an awful lot to consider. However even when all the pros and cons are weighed up and it’s been decided home, hospital or hospice sometimes it just doesn’t go as smooth as you would expect.

We may choose to stay at home and be cared for by your loved ones and supported by district nursing team. Most of the time it goes well and you get your wish and you can stay at home. The district nurse team and Marie curie nurses that cared for my Father in his home gave him a caring, dignified last few days. For that we cannot thank the wonderful medical team enough and will forever be in their debt. Home nursing teams work very hard looking after the patient, ordering drugs, equipment, supplies, communicating with other health professionals. We are lucky to have such good staff working on the NHS, providing us with with amazing service. They are dedicated, take care of the patient and make sure the family are coping too. At present I have the most amazing team of District Nurses that come in to my home and give me injections, service my stoma/gastrostomy tube, change dressings, etc. They also look out for my nearest and dearest.

However for some there can be a time that everything is all set up and there is a spanner in the works and you need shipped off to hospital and you no longer get the home care you so wished for. In a snap decision one of most difficult decisions of your life has been literally taken out of your hands. What we have to remember is things happen for a reason and getting sent into hospital is most likely with best intentions.

When we make a decision to end our days in a hospice it’s a choice that certainly does not come lightly. Whilst you get fabulous care and are in a safe and secure environment, it’s not home. Although hospices have a much less clinical feel than hospitals you can’t quite move your pet in. The biggest problem at the moment is the waiting time to go in. Main reason being there just isn’t enough palliative care beds to go around. It’s heartbreaking but the practicality is that we are actually waiting on someone passing away to then offer a bed. In the UK we get used to getting our health care and this includes all our cancer treatments free of charge. All us human beans in UK take our health care for granted; go to the doctor and don’t think about the cost. Many people think more about putting money away vet bills for our pets or saving for a holiday than donating to a charity.

Hospices, such as Marie Cure and St Columba’s, home care nursing from Marie Curie and Macmillian are not NHS or big private hospitals, they are self financing. They are charities. Rely on donations and fundraising. They offer their services free to patients who need them, at times it may be respite care where a patient goes in for a few days then goes home, or the nurses go to a patient’s home and takes care of them; gives the family help with washing the patient, changing pyjamas, changing sheets, etc, and patient staying in hospice for life end care.

On thinking about the charities, I believe we need to try and chip in a tad if we can. Next time you are eating that McDonald’s and you are about to have a Mcflurry with it; what’s the cost for the ice cream? Couple of quid? Perhaps think about matching the couple of pounds in a donation, I definitely will.

I’m in my mid fifties and have known people very dear to me that have died by their own choosing at home, in hospital and in a hospice. All very well cared for, and I can see the benefits and down sides of all. For the person that is going to meet his Maker and for those that are left behind. Me? If I mange to get my wish I will not be at home and I will not be a burden on anyone. Let’s hope this works out.

Fabulous afternoon at the dog park

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

My Labradors are content at our holding. Buddy never really leaves my side, goes wherever I go, literally with me into the bathroom, etc. The clever clogs knows when my unusual body is playing up and despite having my peg feed on my blood sugars drop and he comes to my assistance. He knows when my heart is banging so hard I can feel it pounding. Buddy is a wonderful assistance dog to me, my right hand boy. He wanders around the house, pads up and down the long hall. If I was to put a pedometer on him I could imagine his step count each day just in the house, never mind the garden would be pretty high. Bella gets a free reign to. They love their runs in the back field, especially with granddaughter Alexandra. However, when my sister Hazel said she had booked www.unleasheddogparks.co.uk for Buddy, Bella and her young border collie Jed I never anticipated what was in store – a fabulous afternoon at the dog park

Unleashed dog park is only literally a three minute drive from our home in Boggs Holdings, Pencaitland. It provides a wonderful safe environment to let your dog run free and get plenty of exercise. There are great quality equipment for the dogs to play on, a sensory area, a sandpit.

The massive bonus for us is you drive your car into the field you will be using. With my health the way it is, I’m certainly not up to walking my babies a long walk. Places like the dog park in my area are just perfect for a treat. They enjoy running around as they do on our wide open fields but with the added extras of the sensory garden, the equipment to climb on. A fabulous and safe place to train or treat your pampered pouch.


Buddy on his favourite ramp


My only disappointment was photography is a huge passion of mine and I neglected to take my Nikon camera with me I took all my photos on my phone. Don’t get me wrong I was really pleased with the results on my Apple

Bella eager to get going, but will pause for a photo if you bribe her 😝

“Look at me go”, says Border Collie, Jed

Bella ready for an adventure

Since March 2020 life has been a funny old world for us all. The arrival of Coronavirus and the devastating effects it has had on us. Many of us have had life changing situations and learned to live with a new normal. We have lost people we love, heartbreakingly not been able to be with them in their hour of need. Staff have courageously battled on through conditions many have never seen before. For all the dedication of workers, volunteers, families, friends, loved ones, etc I thank you. Without the help and love of others it’s difficult to see the light at the end of the tunnel.

Now sitting writing this on this Thursday morning in April 2021 in my sitting room, I feel a whole lot more positive than I did this time last year. The vaccine is going well. Yes we are concerned about blood clots, but that’s a whole different story and I believe the benefits outweigh the risks. The restrictions are lessening here in Scotland.

My District Nurse, Jennifer was in yesterday she commented how peaceful and relaxing our home is. I told her yes with my carcinoid syndrome fatigue is a huge problem as well as nocturnal diarrhoea so quietly listening to music and writing is relaxing and helps a great deal. Buddy and Bella help too. Snuggling up on the sofa with my Labradors can be just what the Doctor ordered.

The stressful year has affected us all. For me the best way I cope is having my glass half full not empty. Taking the dogs to the dog park such as Unleashed helps blow away the cobwebs. It benefits both the human beans and the K9s.

If you haven’t been to a dog park before and you are swithering, give it a try, Buddy is ten years old, Bella eight and my sister’s border collie, Jed is only nine months. They all had an amazing time. Got home tired out and I’m sure they are looking forward to their next visit.

This Saturday we will spring forward

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

It’s coming up to the final Saturday in March and here in the UK we are all going to lose an hours sleep. We usually associate lack of sleep with things like stress, or going on a night out, or maybe the baby has kept us up crying. But this time we are getting told YOU WILL HAVE ONE HOUR LESS THROUGH THE NIGHT LIKE IT OR NOT. Are most of us going to complain about this? Heck NO! Why, it’s British Summertime. This Saturday we will spring forward.

Since March 2020 for many of us life has been pretty difficult one way or another. We have had many an incident to try us. Covid-19 struck and the world has never been the same again. Worldwide 125 million have been diagnosed with covid, 2.75 million people have died from covid. Countries have been in lockdown, many of us still have restrictions. Businesses closed, lots of folks unable to work or changing their way of working and working from home or making adjustments to their workplaces to ensure the safety of the workforce and customers. Education has been a huge challenge for both students and staff. Everyone in life feeling some sort of pressure in some way or another.

What we have to remember is everything that has been done is in the interest of all of us. When we have been told to stay at home it is for our own good and to help save lives. The vaccine is being rolled out and ticking along nicely. The elderly, frontline workers and the vulnerable were the first to get their injections. Now centres are busy working round the clock making sure we all get immunised.

As the beautiful daffodils dance in the March winds, they bring hope and I believe happiness. Our front garden has many daffodils. As the dogs run up the grass and the sun shines down on them as they pass them you can’t help but feel a warmth in your heart, even on a cool day. Yesterday my sister Hazel and my 5 year old granddaughter Alexandra walked my Labradors. They all had a lovely time. Including me; I maybe wasn’t on the walk, however I so enjoyed hearing about it when they came back and loved to see my delightful labs looking so happy. Tails wagging franticly, bottoms wiggling and big doggie cheesy smiles.

Hazel, Alexandra, Buddy and Bella out for a walk


Hubby Steve came back home and Alexandra was very excited to see her Papa. Out she went and jumped on the lawn tractor. And rode up the garden, her beautiful curly hair naturally blowing back showing her delightful smiling happy face. Afterwards she came striding back to the house, grinning from ear to ear with a bunch of daffodils in her hand from the garden; won’t they look nice in the window Granny, Alexandra said with pride. And how right she is.


Tonight I will be going to bed, and setting any manual clock one hour ahead. Big benefit in UK is daylight saving. Next weekend is Easter. I’ve got a busy week ahead, stoma nurse specialist video call on Monday, big discussion and specialist training to get discussed. Specialised training to get booked in. My nurses will be in on Wednesday for Gastrostomy full service, dressing change and octreotide injection.

Lets hope the weather starts to get warmer, and life will certainly start to look an awful lot brighter for all of us.

Daffodils on the windowsill

Alexandra walking Bella at the back of the house

World Cancer Day 2021

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

I’m pretty sure that most of us have been affected by cancer at some time in our lives, either by living with the disease, helping someone through it, or maybe its an acquaintance, but affected you more than you thought it would. Whatever your involvement with the word cancer and the illness, it impacts the lives not only of the person that physically has the diagnosis but those around them. As someone that has had the word cancer in their life for quite some time, the diagnosis in many people, although it has taken the life of such wonderful people today is a day for positivity today is World Cancer Day 2021

When many of us sit in a consultation room and gets a cancer diagnosis it can be like hitting a brick wall and your world can go in a turmoil, everything can become a blur and life may never be the same again. Some cancer journeys are fairly short and others are a long hard slog, whilst there are unfortunately some that are managed with palliative care. Wherever the road takes you its always a memorable one and easier if you have someone to share it with.

Family and friends are fabulous they listen, help you, take you to appointments, etc. And are a great shoulder to cry on. However, we have to remember they are affected to and need escapism. Sometimes its good to talk to a complete stranger. Or at least what starts of as a stranger. When you are going through a cancer journey please reach out and talk. Talk about your feelings, don’t leave them in the box and feel strangled and down. Charities such as Maggies Cancer Care, Marie Curie offer volunteer facilities where someone will chat to you, other places do this service too, ask your oncologist, consultant, doctor, GP or nurse for advice. Even if you are too unwell to go and meet up, or as we are at present in these restrictions due to covid; arrangements can be made to chat on the phone. Believe me it really helps. It certainly doesn’t have to be on the nature of how are you feeling?, but can be if you want it to be. Conversation can be light hearted. Just because you have a serious illness doesn’t mean you need to have a serious conversation; you are still allowed to laugh. Its lovely to build up a relationship with someone and have trust in them that you can talk and say things and that it will go no further. Not feel guilty for what you say. Feel good for laughing. Share stories.

Whatever the cancer journey its usually an emotional one as well as a physical one. Most certainly one we couldn’t do without the help of the wonderful oncologists, consultants, doctors, scientists, nurses, volunteers, researchers, drug companies, charities, etc. For their amazing hard work and dedication I would like to thank them. What certainly keeps me going is positivity and keeping that frown upside down by making sure I smile each and every day.