The first Friday in February is wear red and raise awareness for heart disease. You may think what’s the link between a cancer patient and heart patient? Genetics, bad luck, unhealthy eating, poor exercise, etc. It may be any of these if a cancer patient develops heart disease. However one thing that is a common link – neuroendocrine cancer patients with carcinoid syndrome have a risk of developing carcinoid heart disease. Many patients get routinely scanned with an echocardiogram annually. Help raise awareness. Have a heart wear red on February 2nd 2024.
February is heart awareness month. Wearing the bright vibrant colour will not only make you feel better but it will help others take notice. Put on something different and draw attention- grab that person’s conscience.
Carcinoid heart disease
Carcinoid Heart Disease affects 20% of people with carcinoid syndrome it is caused by the build up of plaque in the heart valves. It affects how the heart works usually leading to surgery.
If you are stuck for what to wear on the first Friday in February think red! Encourage your work colleagues, friends, etc. Spread the word it’s good to talk and please have a heart wear red on Friday February 2nd 2024
The UK is a world class leader in cancer research. Since 2001 all the hard work given by all at The National Cancer Research Institute (NCRI) has played a very large part in this. After 22 years the NCRI closes its doors. The announcement about this charity of the sudden closure of this UK National Cancer Research Institute comes as a huge blow.
The charity grew over its 22-year lifespan, linked up with many partners including Blood Cancer UK, Breast Cancer Now, Prostate Cancer UK, Pancreatic Cancer UK, plus many more. Fabulous work taken place including trials, research, specialist cancer groups, and networks. All fr the greater good of those affected by cancer; working together to improve coordination of cancer research throughout the UK and beyond. Improving the lives of millions of people around the world.
Professor Lawrence Young, Professor of Molecular Oncology, University of Warwick, said: “This is yet another blow to the UK research community”
Almost 400 000 new cancer cases are diagnoses every year in the UK. Understanding the way to treat the cancer for the best possible outcome is the goal. For some prostate and breast cancers NCRI came into its own with trials, involving radiotherapy combination trials and research resulting in treatment reduction from weeks to days.
Professor Lawrence Young, Professor of Molecular Oncology, University of Warwick, said: “This is shocking news that will significantly impact cancer research and the development of new treatments in the UK. This is yet another blow to the UK research community and to the position of the UK as a world leader in cancer research”.
22 Years of Ground-breaking Research to Sudden Closed Doors at The National Cancer Research Institute
The abrupt closure of the NCRI will be a huge void in cancer research. The charity well and truly made its mark, bringing the whole cancer research community together covering the whole UK and beyond. Working to improve the overall quality of life of anyone affected by cancer. Understand the cancers, develop the treatments, lessen the symptoms!
There were countless trials and research projects that have helped and will still go on to help so many people. A study showing Children with kidney cancers continue to be diagnosed with larger and more advanced tumours in the UK and Ireland than in other Western European countries, according to research presented at the NCRI Festival.
A study by Dr Jonathan Wadsley, a consultant clinical oncologist let us know Patients with low-risk thyroid cancer can receive lower dosed of radiation treatment. Thyroid cancer is relatively rare with a diagnosis of 3500 people per year in the UK, there were 434 patients in the trial. Contributing to a good study.
Trials and research improving lives of millions
Professor Robert Huddart, Professor of Urological Cancer at The Institute of Cancer Research, London, and Chair of the NCRI Radiotherapy Working Group (former known as CTRad), was saddened to hear the upsetting news. He said; “The UK has developed the reputation for the delivery of high quality, innovative academic trials that has changed practice and improved the outlook and lives of millions of people around the world. In radiotherapy examples include trials that introduced advanced technology reducing side effects and improving outcomes, changed prostate and breast treatments from five weeks or more to a few days”.
Professor Nick James, Professor of Prostate and Badder Cancer Research at The Institute of Cancer Research, London commented: “This news is astonishing. It could be devastating for people with cancer in this country”.
Charity Partner, Blood Cancer UK Deputy Director of Research, Sarah McDonald comments on the need for clinical trials. Stating they are the route for those living with blood cancer to access treatment. Sarah Commented: “It’s sad this long-standing multi-partner collaboration will be winding down. The partnership has had success, helping thousands of people get access to potentially life-saving treatments” . She went on to say, ” NCRI has played an important role at Blood Cancer UK. We’re deeply committed to continue collaborating with researchers, patients, charities, and government to ensure the hard work of the NCRI isn’t lost”.
The NCRI have made this decision after much though and debate. The uncertain economic and research environment has had an impact on the charity. After consulting with stakeholder, it was questionable that NCRI would be able to survive in the long term. therefore, proving a risk of operational failure. Hence the decision to close.
Fiona Driscoll, NCRI Chair stated: “It is with a mix of pride and regret that we write to inform you, that after 22 remarkable years, the NCRI will be winding down. This decision has not been taken lightly and has a huge impact on the NCRI staff. We are grateful for their continued support, hard work, and professionalism at such a challenging time”.
Massive blow for research
This is a dark day, especially for anyone affected by cancer. A massive blow for research and clinical trials. Remembering the extremely hard work that has taken place, passing on information is vital so the wonderful work of the NCRI is carried on.
female lab technician doing research with a microscope in the lab.
The clock has sprung forward; the one time when we don’t mind losing the hour’s sleep through the night. The spring lambs are running around joyfully in the fields and the yellow daffodils dancing in the March winds a welcoming sight even on the coolest of days. This coming weekend is Easter. Will the Easter Bunny leave an egg in our house?
I am looking forward to the month of April and hoping the temperature will increase; after purchasing a small amount of seeds and plants I am eager to get more in the pipeline. There are some beautiful violas now in the hanging basket at the front door, ready to give visitors a colourful greeting. Alexandra and I planted some sunflower seeds, my 7 year old granddaughter’s delight when the first plant poked a little green sprig through the compost was priceless. If I could bottle her excitement when she called on me on Monday morning I’m sure I would make an awful lot of people feel very happy when they heard or saw this; best medicine in the world – being together, happiness and love.
Have a wonderful Easter. If you can, keep that frown upside down and smile each and every day.
It’s the beginning of 2023 and what better time to tackle something. Push myself through the barriers and spend quality time with my precious beloved beautiful Labrador Bella. Doddie Aid is back and I’m walking with Bella to help raise awareness of Motor Neuron Disease (MND). This amazing event not only raises awareness, gets everyone together, helps encourage exercise; no matter if you can take a couple of steps or run a marathon you can get involved. You certainly don’t feel excluded. Doddie Aid 2023 raises much needed funds for My name’5 Doddie Foundation which invests in research to find treatment for MND.
In the year of 2017 the gentle Scottish giant Doddie Weir told the world he was living with MND. Being the person he was he wanted to raise awareness, educate others and help find a cure for this disease.
Doddie may no longer be physically present on this earth. However he will always be in our hearts. The work he started will carry on in many others. You only have to look at the photographs and film footage to see what joy and hope his presence brought amongst others. The look on faces full of grit and determination.
Doddie Weir you were a strong courageous man. I will be taking part in this 6 week event with privilege. Now that Doddie Aid is back I will be walking with Bella rain, hail or shine. Fingers crossed we will clock up some miles for Team Edinburgh.
Today is Net Cancer Day. November 10th is the annual awareness day for Net Cancer. So many people wait for a long time for a diagnosis. Go back and forth to their doctors with symptoms and get told it is irritable bowel or something else other than the actual cancer. When 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. Net Cancer and Carcinoid Syndrome is rare hence not the first thing the doctor looks for. Awareness needs to be raised for this cancer. Today is NET Cancer Day and the hope that the message gets around the world – raising awareness of this cancer.
I have been living life quietly over the last 3 years. However what I did promise myself after the diagnosis of carcinoid syndrome – was that I would try my best to keep busy, as long as I was able do as much as possible. Knowing it was a case of managing symptoms rather than curing them my life philosophy is make the best of it. October has been a month of trips, seeing people and reflection. I have most definitely had a busy October.
Most of the readers will know my husband has a Harley-Davidson motorcycle. We are members of The Dunedin Chapter. Steve enjoys going out on runs, when I am up to it I accompany him. There is a social side too, this October we had a lovely night away in a hotel and saw friends of the club at The End of Season Bash. Sadly on the same weekend we attended a funeral.
The funeral of someone we know that has had a heart condition for a long time. New of a death never comes easy. Steve and I went to his ‘Celebration of his life’ service. It was most definitely him. If you can say a funeral was beautiful then this one was. From the drive up to the crematorium, in a lovely setting to his eulogy and the dancing and clapping to the music of The Entertainer was comforting.
I had a trip to Bristol mid October, was there to interview a family and staff at The Bristol Children’s hospital. I wrote an article on virtual reality for physiotherapy in children. You can see the article Here. I felt privileged to be involved. Also wrote a post in my Blog Spot
Found time to attend a wonderful Halloween party with grandchildren.
Today I am sitting with my beautiful labrador Bella. Tonight I will be a couch potato and watch Celebrity in The Jungle on TV.
The summer has been fairly kind to bikers this 2022 in Scotland. A great many dry sunny days and even on the cloudier days the sun has made an appearance on several occasions. For many friends they have been attending bike rallies, going off on super runs. No matter if it is long or short just the getting out for a while whether it is with a group of mates or a solo run. That feeling of freedom with not a care in the world and to cap it all the fabulous scenery that our country has to offer is most definitely worth taking to the road for. However I have had a medical issue with my gastrostomy tube and wasn’t feeling too great at the start of the season. Not like me at all but I welcomed my regular visit to one of my consultants. We had a long chat and it was decided I would get my lifesaving rig removed and a further procedure performed in hospital. Once this is done hoping I will be back on the Harley-Davidson® in no time.
True to his word I faced 13 medical professionals in the operating theatre just short of 4 weeks later. Getting the new tube fitted was most definitely daunting. The staff that look after me are absolutely amazing and when my heart rate dropped extremely low that the alarms were ringing they all remained so calm. Quietly I could here the radiologist say Elizabeth’s lips and feet are a lovely shade of blue. A nurse came and held my hand reassuringly and gently put a foil blanket over, ‘you are a tad cold’ she said and then continued to massage my feet. Once it was over and I was back sitting up and eager to go home one of the nurses that worked in London introduced me to a fabulous new dressing for around my tube. She gave me a pretty floral one and told me I could purchase them online. They are called G-tube dressings and are washable. Fabulous.
I got the talk about taking this easy when I got home. I so have to admit I never anticipated how long it would take for me to feel like ME. But what I can say is 4 weeks after normality started to set in. Since I have had it done I’ve enjoyed riding pillion three times;l. Gosh the relief I can have my feed running and it isn’t leaking out of me. Or more importantly the balloon can no longer explode inside my tummy. What a relief. I enjoy plenty of relaxation time; meditation and wellbeing top of the list. And of course a lot of reading snuggled into my beautiful labradors. As well as picking up a book and sifting through the pages which I so enjoy I enjoyed many books on Audible – Amazon do super deals including the first three months for 99p. This is one of the best and most used subscriptions I have taken on. If you enjoy reading and audio books you will absolutely love Audible If you don’t have Amazon Prime, it is worth joining. I wouldn’t be without it. Orders delivered next day, music, videos, etc. Superb prices. Fabulous.
The runs are very different, the first was just Steve and I tottering around our own area on my birthday on the 6th of August. We enjoy touring the Glide a little East Lothian Route, starting and finishing in Pencaitland. Taking in East Saltoun, Gifford and Haddington. The second was a ride to Stirling to meet up with some members from The Dunedin Chapter. A quick hop on the A1; stopped at Elginhaugh to meet up with Deke and then onto the bypass, joined and rode up the M9. A natter with fellow bikers and then back home. And finally a third run to Gullane to return granddaughters school bags.
The runs were enjoyable, the first most certainly very scenic and enjoyable for pillion view. Riding along single lane country roads – so easy on the eye. Chocolate box houses, overhung trees, lambs running in the fields. However on the ride to Stirling the smooth run up the dual carriageway of the A1 with the forth to my right. A perfect clear view of fife and the only distraction was the crops in the fields as they swayed gracefully and rhythmically as if they were dancing in time. The Sunday run to Gullane was a beautiful one. Living in East Lothian it is easy to take for granted such beauty; riding through the championship golf course I watch the golfers enjoy their activities and then take in the quality and beauty of the course. The greens looking in super shape. The course comprises of many shades of green and I think of my parents and the discussion we had many years ago as we looked at a globe and as a child I asked what is Gods colour Blue or Green.
These runs are in preparation to go to Aviemore with Steve. This year in Aviemore we will see many people with motorcycles, especially Harley-Davidsons® It will be lovely to go into the hive of activity. I never once thought when I was up in Aviemore every other week skiing, climbing and endlessly hill walking over a duration of many years would I be a granny riding pillion on a Harley-Davidson®.
I have been looking at books – quite fancy treating us to this one; Britain for Bikers
August was always a month of celebration, I was born on the 6th of the month in 1966 and married on the 22nd in 1986. However when my fabulous Mother died on the 9th of August in 2013 I felt like the life had been sucked out of me. And most certainly did not feel like celebrating. As the years have ticked on I have found I miss her more each day. The telephone rings first thing in the morning and I still expect it to be my Ma. My heart aches, I yearn to sit and chat and share a story or two like we always did. There is so much I want to tell her and the best place to do this is having a blether and a walk in the sunshine.
On Saturday I took a walk in the sunshine. I walked 100 yards from our house in the beautiful sunshine. Walked my Labrador Bella up the garden and let her run free in the field. I admired the beautiful field of everlasting flowers. I sat in the field looked at the stunning carpet of purple. Dancing were several rogue vibrant red poppies. Swaying back and forth, on looking at them if one had a vivid imagination such as mine they look like they are chatting on the dance floor. As I sat I thought of Mum, she would never want me to be sad. Think happy thoughts she would say. Smile and the world smiles with you. On the last day of her life she said to me I will never leave you and I believe her. I still feel her love.
I also feel her love through my beautiful grandchildren. They are very happy loving funny children. Our grandchildren most certainly keep me going and help me all my daily battle. I can now understand how my mother fought so hard when she was diagnosed with lung cancer and struggled on even in the darkest days. The shrieking laughter, the fingerprints on the glass cabinets they leave behind. The little stories they read to you are such a tonic.
I enjoy most of my time with my amazing labradors, very rarely there isn’t a dog at my feet. Bella was on the walk with me on Saturday. We look after our dogs and make sure they get well fed and appropriate supplements. One such supplement is Premium Omega Oil Capsules. You can buy them from Amazon and get them delivered straight to your door. I give both my labradors these super supplements. It comes in an easy to use pump and keeps their skin and coat in great condition. Buddy and Bella love the taste so its so easy to give.
There are many days I am shattered. Would I have life any other way? No not at all.
Have a grand day everyone. And thanks ever so much for taking the time to read this short blog post.
Living everyday with a chronic illness can take its toll. Especially when a rare disease such as carcinoid syndrome and doesn’t trip of the lips easily. Most people haven’t heard of the cancer that comes with it let alone understand it. The daily routine of creams, feeding, blood sugar checking. Not to mention the absolute fatigue. What makes life much easier is routine. And most importantly I make sure I find a special time for friendship, relaxation and love.
In between my weekly tube services, 14 day octreotide treatment I find time to get some normality into my life. The one thing I promised myself is when the words incurable rang in my ears; I most certainly gave myself a talking to and will always fit this disease round my life not my life round the disease. My family is hugely important to me. I will always find the time to have fun and a willing ear. As time is going on and my condition progresses what is becoming apparent to me is what helps keep me sane is friendship, relaxation and love. The unconditional love I have for my husband and children (and their children) goes without saying. I love and am loved by some beautiful people that help me get by. Friendship is amazing, it is comforting to get woken by your mobile phone with a message to ask how you are. Or just to say hello. Sometimes the message actually may be asking for advice – I like that. Totally feel needed. Relaxation is essential for us all, enjoy.
I have been having a particularly difficult time recently with my rig. However on Saturday it was the most beautiful day and there was a Chapter Ride organised. We are members of a Harley-Davidson® bike club – The Dunedin Chapter. We get together for rides, social events, charity fundraisers. Superb way of getting out on the bike and meeting new people. Steve was going on the Harley-Davidson® on the ride. Some of our friends were going on the ride. I decided since it was only a 60 mile run I would go to. Super weather, beautiful scenery, great friends and on our latest Harley-Davidson®. Of course I clambered on the back of the armchair seat. Feed linked up and away we went. A wonderful ride to The Big Red Barn.
After a wonderful relaxed few days seeing and chatting to family on the phone. Speaking to friends. And getting out on the bike for a while. I am now ready for my hospital appointment tomorrow.
Think I will get on the website Handy Candy and get a few goodies for the house. Life is good.
Already we are half way through the year of 2022. Finally after the last few years of PPE, mask wearing during covid and lockdown we are getting some normality in our lives. Covid will never disappear however we are dealing with things and actually getting out meeting each other and it feels so good. Most of us have missed out on something in our lives, a celebration, graduation, that wonderful holiday we had planned. Sadly there has been difficult times where we have not been able to be together and sickness has kept us at arms length. I most certainly cannot fault the way I have been treated by our good old NHS. My treatment has never stopped or home visits from my District nurses right through the pandemic. Now that time has moved on many people are planning trips to other countries, including three of our friends from Switzerland. Whilst on their trip to Scotland we managed to finally have our bikers BBQ
I am fairly certain that covid will not leave us in a hurry and at the moment it is rearing its ugly head. With a notable increase in diagnosis again. However that is most likely to us all mixing and going out on adventures. A very large majority of us are vaccinated, it won’t stop us getting covid but should hopefully lower hospital admissions and death rates. I have been extremely grateful for the care I have had all the way through. The vaccines I have had. And the continued care and management I get with my cancer team. When I am up to it I enjoy time with buddies and going out on the Harley-Davidson® with my hubby.
The final week of June is always an eventful one for us. A birthday for Steve and brother in law Alan. So now three years later our buddies could finally ride their NC500 trip, travelling from Switzerland on their Harley-Davidson motorcycles. We were so happy to spend the final three days with them. Hear of their travels, have a BBQ at ours, go out to The Hard Rock Cafe in Edinburgh, and on their final day travel with them on their way to the ferry and visit Holy Island and Bamburgh Castle. What fun we all had.
The BBQ was great fun, we chatted, laughed, there was lovely food cooked by head chef Steve. A warm fire pit for those that felt the chill in the air. Steve, Deke and Ewan treated us to some tunes and kept us entertained. I am pretty sure everyone went home with full bellies and pretty satisfied and happy. Our dogs loved having everyone round.
The most important thing I have learnt from hitting the brick wall that day and hearing the words incurable is life is for living. I love and value my family, good friendship and spending some time to get out and see the sights can be energising. However, I do so enjoy taking time for myself. In the way of putting my feet up, sitting in silence and enjoying a jolly good rest with my most beautiful labradors, Buddy and Bella.
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.
smile each and every day 