FUNDRAISING FOR A CURE
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I grew up and lived by the sea in East Kent, which I loved.
My NET story begins, as for many others, with awful diarrhoea for many years. Visits to GPs always resulted in an IBS diagnosis and a hospital appointment put it down to stress, but I wasn’t stressed, just concerned about my situation.
I suddenly lost a lot of weight and experienced anxiety and flushing, and found a large lump under my skin that I could feel around my solar plexus area. I went to see my GP and saw a locum. I wasn’t happy with her lack of interest and made another appointment. My GP was annoyed, saying that I’d already been seen and the lump was muscle where I’d lost weight. Next stop was A&E, where the doctor was very concerned, but they couldn’t give me a CT scan as there was nobody there to operate it. We then decided to go to the Chaucer Private Hospital and pay for a colonoscopy and scan. At our next appointment with the consultant, he gaily told me I’d got Crohn’s disease.
By this time, I was in a lot of pain, especially when I tried to eat and was being sick too. I felt completely lost.
Following a bad fall, I was taken to Ashford Hospital, where they found I had damaged my liver and was transferred to Kings Hospital London. The second day there, I went to the toilet and passed lots of blood clots. I can remember walking back towards my bed with a nurse and then nothing more till I woke up in the ICU with an ileostomy. They had removed my ischaemic small intestine; the tumour had grown around it, cutting off the blood supply. I was told that during the long operation, I had a carcinoid crisis. This was in February 2015.
I was on TPN for 16 hours a day. I didn’t know anything about NET cancer. The NET consultant and senior NET nurse came to see me briefly before going to Italy for two weeks for a conference. They gave me a folder with a zebra on it, but at the time, I felt too unwell to read it. The liver consultant moved me into the liver ward, which didn’t help with finding out about intestinal failure and NETs, especially when the Senior NET nurse was told I’d left when she came back to see me. I hadn’t left, I was still there.
Being on a liver ward, my needs weren’t what the nurses were used to, and it was a difficult time in many ways. One of the nutrition nurses told Andrew about this special ward in Southampton Hospital, specialising in intestinal failure. I was then told I was going to be sent back to Kent, to Margate Hospital, as that was my local hospital. I’d been in Kings for two months and was desperate to leave, but not to Margate Hospital, where they knew nothing about NETs. I asked to go to Southampton Hospital instead and was told,” You have a week to find somewhere to live and register with a GP in the Southampton area, or you go back to Margate.” I made a frantic phone call to Andrew and told him what was needed, and he managed to do it!
When I arrived in Southampton, the atmosphere in F11 was so different to King’s, I immediately felt safe and relaxed, everyone was kind and friendly. I eventually left the hospital on 18th May and met Neil Pearce in the clinic, where he filled us in on details of the operation I’d had and about NET cancer. I had TPN at home and lanreotide injections.
About a year later, Neil Pearce told us they’d looked at the CT scan again, and I had just enough intestine left for a reversal. This happened, getting rid of my stoma, stopping TPN and being able to eat normally again. It took about a year for my bowels to start behaving normally, but life was good. I still have small tumours in my pelvis and spine, but as they are so slow-growing, they are not a problem.
Although I left behind friends of over 40 years, it was an easy decision to move to Southampton and the quality of life I have now is due to the excellent care I’ve received over the last 10 years. Another bonus is that my son and family live nearby in North Baddesley, and I’ve had the pleasure of seeing my grandsons grow up.
PS Letter to GP in Ramsgate:
On 10th November 2015, NET cancer day, I wrote to my old GP in Ramsgate and told him everything that had happened since leaving my last appointment with him. I told him it wasn’t a complaint, I just wanted him to be aware of the symptoms of NET cancer. A few weeks later, I got a letter back to say that the doctors had had a meeting to discuss my letter and to find out about NET cancer. The outcome was that they were going to do the 24-hour urine test on all their patients with long-term diarrhoea.
READ ABOUT HOW FUNDS ARE USED
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PLANETS Funds New Wellbeing Room for Liver Ward at UHS
PLANETS funds new wellbeing room for liver patients at University Hospital Southampton A new wellbeing room funded by PLANETS Cancer Charity has been opened for patients with liver diseases at University Hospital Southampton. The facility, located on the gastroenterology and hepatology ward, provides a quiet space for patients and a place for private conversations which […]
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PLANETS funds novel 3D printed livers to aid complex surgery
Surgeons in Southampton are the first in the UK to begin using 3D printed models of patients’ livers to help them perform a complex cancer operation. Converting the data available from CT and MRI scans of patients with hilar cholangiocarcinoma – a type of bile duct cancer – into 3D models will enable better planning […]
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PLANETS Charity Welcome Coach Alison Bailey to their Support Team
Here at PLANETS we understand how daunting a cancer diagnosis can be. We know firsthand the transformative power of support throughout the cancer journey and have experienced ourselves the highs and lows, the triumphs and setbacks and the profound impact they can have on your life. We are very happy to be welcoming Alison Bailey, […]
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PLANETS completes £1 million fundraising campaign to purchase pioneering radiotherapy machine
PLANETS has thanked its supporters after completing a £1 million fundraising campaign and making the final payment for a pioneering radiotherapy machine. PLANETS Cancer Charity has been fundraising for the past six years to fully purchase Mobetron, a revolutionary mobile device which delivers radiotherapy during surgery – known as intraoperative radiotherapy (IORT). When the charity […]
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PLANETS Receive £10,000 Grant from The Hospital Saturday Fund
Thank you to John Greenwood, Trustee of the The Hospital Saturday Fund, for visiting us on Monday and bringing this incredible grant of £10,000 to support our IORT (Intra Operative Radiotherapy) machine. This will enable us to continue delivering this lifesaving treatment at University Hospital Southampton – the only centre in the UK currently offering […]
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PLANETS Fund ‘New View’ Psychotherapy Course for NET Patients
PLANETS have funded a psychotherapy programme, after a successful pilot course, to help NET patients see their diagnosis in a ‘new view’. We all know that different people deal with their neuroendocrine cancer diagnosis very differently. Initially there are lots of scary tests and Doctor appointments. Then there are lots of talk about […]
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Head and Neck Cancer Patient Treated with IORT in UK First
A woman from Salisbury has become the first patient in the UK with head and neck cancer to receive radiotherapy in the operating theatre during surgery to remove a recurrent tumour. Jayne Garrett, 53, underwent major surgery at University Hospital Southampton on 25 April after suffering a recurrence of her cancer following conventional treatment […]
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PLANETS Host the 1st National IORT Symposium
It was an honour to present the fantastic work and great initial results to medics from all over the country at our 1st National IORT (intra-operative radiotherapy) Symposium on Friday June 21st at University Hospital Southampton. After a lot of hard work and fundraising in order to bring IORT to the UK for the […]
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PLANETS Cancer Charity and the Robert White Trust, Fund a new regional NET Cancer Dietitian
A dietitian funded by PLANETS Cancer Charity and the Robert White Trust Fund is due to start work to develop and provide a comprehensive dietetic service to patients diagnosed with Neuroendocrine Cancer (NETs). Ruth Lee will be based at the Dorset NET service, which is part of the Wessex European Neuroendocrine tumour society centre […]
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Southampton Secure £200k from The Robert White Trust for NETs Research
PLANETS are excited to share the news that University Hospital Southampton have secured £200,000 funding from the Robert White Trust for a research project that aims to gain a better understanding of NET biology which may lead to a greater range of treatment options for patients with this rare disease. Robert White was a former […]
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Bowel cancer patient becomes first in UK to be treated with IORT
We are thrilled and proud to update our supporters that a Southampton bowel cancer patient has become the first in the UK to receive radiotherapy during surgery using the IORT machine that PLANETS has funded. he 58-year-old male, who completed a combination of conventional chemotherapy and radiotherapy in August, underwent major surgery at Southampton […]
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IORT Launch is a Success!
SOUTHAMPTON CLINICIANS PIONEER USE OF REVOLUTIONARY CANCER DEVICE PLANETS founders Neil Pearce and Brian Stedman, together with fund manager Layla Stephen successfully launched our long awaited IORT machine last night. The Mobetron is the first portable system able to administer the treatment in this way – known as intraoperative radiotherapy (IORT) – and will […]
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IORT Arrives at Southampton!
PLANETS are thrilled to announce that the eagle (finally) has landed! 2 tons of intra-operative radio-therapy machine (IORT) arrived from the USA this week – currently undergoing acceptance testing. This is the UK’s first ever mobile electron beam radiotherapy machine for treating cancers during surgery. Thanks to everyone who has supported our fundraising which has […]
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Southampton Aiding Research into Earlier Diagnosis for Pancreatic Cancer
You may have notice that Southampton was mentioned in recent media stories regarding The National Tumour Bank that is carrying out important pancreatic cancer research? Colin Johnson, Professor of Surgical Sciences at University of Southampton, has this to say about the project: ‘The National Tissue Bank is a major development in pancreatic cancer research. Several […]
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Sainsbury’s Hedge End Donate Digital Radios
A big thank you to Sainsbury’s Hedge End for donating two digital radios to PLANETS to be used in the lead lined Gamma Scanner Rooms at Southampton General. Pictured presenting the radios to staff in the scanner rooms are PLANETS Fund Manager, Layla Stephen, and Dr Brian Stedman.
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PLANETS to Fund Pancreatic Cancer Research at Southampton
PLANETS Charitable Fund are excited to have committed to provide a grant over a two year period for a pancreatic research project: ́The role of Eps8 in αvβ6-dependent functions in pancreatic cancer invasion’ to be undertaken by Dr Jo Tod. Pancreatic adenocarcinoma (PC) has one of the worst outcomes of any cancer; only 3.7% of patients […]
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First Patient Receives PRRT at Southampton thanks to PLANETS
[social_button button=”facebook” flayout=”standard ” fwidth=”450″ faction=”like” fcolorsheme=”light”] UHS magazine Connect featured a fantastic article about NET patient Maureen McKenzie who, in July 2013, became the first Southampton patient to receive PRRT (peptide receptor radionuclide therapy). The equipment for this treatment was jointly funded by UHS and PLANETS showing just how important and valuable the […]
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Improving Patient Services Across the Region
[social_button button=”facebook” flayout=”standard ” fwidth=”450″ faction=”like” fcolorsheme=”light”] Pancreatic cancer affects over 8000 patients each year in the uk and remains the fifth biggest cancer killer in the UK, despite this its has been underfunded for many years and currently receives just 1% of total cancer research funding in the UK. NETs are a rare form […]
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