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When talking about my illness, I usually talk in the plural. A wise friend of ours at Church remarked that many people ask about the patient, overlooking the patient’s spouse who also suffers. So this is our story – Helen’s and mine.
There are clear stages from diagnosis through treatment and subsequent surveillance. The constant and crucial factor has been the generosity and empathy of all involved in providing the support that we have needed over the last 5 years.
Diagnosis
Our diagnosis came completely out of the blue. There were some symptoms: slight indigestion and general tiredness after a busy time at work. Investigations were ordered the first of which uncovered a Duodenal Ulcer which accounted for all of the stated symptoms. We were stunned 3 days later at Bournemouth Hospital when receiving feedback on a CT scan to hear the life changing news that I had a tumour on my Pancreas.
Nurse Specialist Emily took us to a separate room for tea and a discussion. She explained what we could expect and that she would be our single point of contact for any enquiries we might have. She also advised us not to search the internet, but to rely on Macmillan and the NHS websites to answer our questions.
It was she who rang the following week with the news that the cancer had not spread to my lungs. A surreal conversation followed with Helen as I said, “Good News darling, I have only got pancreatic cancer!” This became a crucial part of our coping strategy. Be clear what ‘Good’ looks like today. It may be different to tomorrow, or indeed from yesterday, but it’s a way to find the positive in a place where you really don’t want to be.
Surgery
Ahead of the initial clinic, we read up Pancreatic Cancer on the Macmillan website and prepared points to raise. Mr Arshad at Southampton covered all this and more, leaving us confident that we would be well looked after. Here was a clear plan! After the operation, he explained that the tumour had been removed with a clear margin; there was a small amount of pancreas remaining. He had to remove the Spleen as well.
36 hrs after discharge from hospital, there was a complication, needing emergency re-admission. The ward told to take my emergency medication and go straight up; not to delay in A&E. This was not in “the plan”. I had something of a melt down. Helen, on the other hand, got me into the car and we went straight in, not passing ‘Go’ and not collecting £200 (for the Monopoly aficionados)!
Chemo
When describing the treatment path, Mr Arshad had cheerfully indicated surgery, recovery and then Chemo for 6 months. This sounded overwhelming until he explained that was actually 12 cycles of 2 weeks. We could manage a fortnight project, so that’s how we tackled it. As we were preparing for the chemo to begin, lockdown was declared. These were interesting times in more ways than we would have liked!
We returned from the first infusion with a large brown paper bag full of medication. Each type had different instructions. The only way that we could manage it was to draw up a table for each 14 days cycle and mark in what was to be taken when. The same table captured ‘observations’ so we had a paper record ahead of phone calls with the team.
The Oncology teams were brilliant, both in Lymington, and in Southampton. We had telephone reviews each cycle which brought their own challenges. It took a little while to grow used to discussing bowel movements with somebody I had never met! By the time I did describe what I now know to be peripheral neuropathy halfway up my legs, the team immediately removed one particular chemo drug from the mix. In discussion with Dr Charlotte Rees, the Oncology consultant, we stopped the treatment after 10 cycles.
Support
I said at the outset of this story that, for us, the excellent medical treatment reinforced by the support structure, upheld us throughout this very difficult episode in our lives.
Nurse Emily in Christchurch and Nurse Lyndsey in Southampton proved unflappable, with access to the right people at the drop of a hat (or text). This has been particularly relevant around the annual surveillance reviews, when I tend to develop significant hypochondria!
We have been active members of our local church for 25 or more years. The support from them and our wider families has been enormously valuable. When I was down, Helen had trusted friends and family on whom to lean. In fact, it was only recently that she shared her anxieties and fears though that time. Taking an additional pair of ears to appointments has been invaluable.
We decided to get involved with Planets to keep in touch with the team, and to see if we could provide encouragement to others on their own particular journeys. Caitlin the Dietician’s cheerful and practical advice around Creon has been beneficial. Also, learning about Maggie’s Cancer Support Services at Southampton for those newly diagnosed.
Lessons
We have tried to pick out some lessons that we have learned from this time in our lives:
~ Treatment for a complex condition is all about teamwork and interpersonal relationships. Build them and maintain them.
~ Understand and own “the plan”.
~ Build and nurture a support team on whom you can rely, and whose judgement you trust.
~ In the thick of it, ask yourself “What does Good look like today?”
~ During chemo, don’t be squeamish. It will impact your digestive system. Don’t be shy to talk about anything and everything.
Looking Ahead
When we started, Mr Arshad said that after a surveillance programme of 10 years, he would declare us healed. We are halfway there.
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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