Tag: london

Sudden closure of UK National Cancer Research comes as Huge Blow

by Lizbeth, posted in cancer, health, Uncategorized

Written by Dr Elizabeth Johnston-Young

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.

Approved Vitamins Dog and Hat Gardening Naturally

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.
ABC Prints BC GELS Skiworld

London, the city that keeps me alive more ways than one

by Lizbeth, posted in Nets/carcinoid Syndrome, Uncategorized

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.

Steve and I in London with the Fatboy

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®

Alan and Hazel

very popular arrival at Ace Cafe

Inside Ace Cafe

A selfie at Ace Cafe

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.

Steve, Hazel and Alan at London Eye

Steve and I in St James’s Park

Buckingham Palace

St James’s Park, London

Warrs

Fist Bump

A Trip To Royal Free In London in April

by Lizbeth, posted in Nets/carcinoid Syndrome

I had an appointment with the big cheese in London:  Professor Martyn Caplin.  He runs a neuroendocrine tumour clinic at The Royal Free hospital.   He is highly specialised in his field.  And people are referred from many different countries,and travel great distances to see him.  My mere 400 miles, is starters orders for some.  I have a lot of faith in our Prof Caplin.  He is very thorough, takes time to listen to what you have to say.  And most importantly remembers you are a human being and have feelings.   I know when I go down to see him I will most likely be seen later than my appointment time.  This is because he gives every patient the time they need and deserve.

For my appointment in April I need to get myself organised. Firstly we need to book a hotel for a night before and a night after the hospital.  I’m not your average human than can just jump fly down to the smoke, get seen at at the hospital and then travel back.  I tried it once.  It took over a month to recover from the exhaustion.  Premier Inn Booked.  Now time to sort the train tickets out.  It’s great that you can book everything online.  Train booked, and we can get the tickets at the station right up to the day we travel.  Cases are packed.  Lots to go in my case, feed pump, giving sets, feed, dressings, creams, medicines, clothes, etc.  Nurse has been to change my dressing,etc.  dogs are looking at the cases suspiciously.

There has been a slight hiccup with the dogs boarding.  They were scheduled to go stay together with Sally whilst we were in London.  Sally has Buddy and Bella’s son Harley.  The week before we are due to go, Bella goes into season.  Both Bella and Buddy only have one thing on their mind and it’s not walkies.  We have to put plan B into action.  Our friends, Louise & Keith look after Bella and Sally look after Buddy.    For both our dogs this is the first time they have stayed away from home.  Anytime we have ever been away one of our sons have looked after the dogs.  This was a big deal for both the dogs and Steve & I.   I have to say both dogs were looked after impeccably.  They were walked several times per day, played with.  And when we came home we could tell although they were very happy to see us they had enjoyed their time away.

Our train journey was eventful.  We met a very gutsy lady and her 7 year old son.  They travelled from York to London every Sunday.  The young lad attended Great Ormand Street Hospital for an injection.  He was under a trial drug scheme.  He has muscular dystrophy.  We chatted, shared stories, laughed.

When we got to the hospital we used the self check in.  Before I could take a seat in the busy waiting room the nurse called my name.  We walked down the corridor and into the room.   She took my weight. she said.  The Prof wants to see you, if you just take a seat along this end.  Steve and I parked our bums on the seats and waited on Prof Caplin calling me.

Fifty minutes passed my appointment time the familiar gent calls my name.  Prof Caplin kindly waits till both Steve and myself are in the consulting room.  We take a seat.   There is a lot to discuss.  Since I saw him last I’ve had my gastrostomy tube fitted, been hospitalised several times with sepsis/infections, had feeds, cream and meds changed.   After we talk, he helps me up onto his couch, he examines my belly and has a good look at the peg site.  Listens to my chest, feels my neck, under my armpits.  He says  quite a lot of granulation there.  The general all round site and your skin is healing well but you do have a long way to go yet.   I take a seat back beside Steve.  Prof mentions my last 5HIAA test was elevated. The result was 175.  A tad higher than he would like.  He says he would like me to get a scan.  Steve pipes up,  will that be a gallium scan.  The prof immediately answers us,  I can organise that for you, no problem.  You will only wait a few weeks on the scan.  I will book it now whilst you are here.   He then goes into the drawer in his desk and takes out a card and hand it to me.  This is the number for our specialist nurses.  Once you have had the scan and the result is in the nurse will phone you and discuss the results with you.  And what happens next.
We were back home in Scotland three days later.  Two days after  we arrived home the telephone rang, it was the nuclear medicine department of The Royal Free Hospital in London.  My scan was in eleven days time.  Certainly cannot complain about the quality of the service I am getting.