Here you can read our operable stories in full. Please click on the name of the person whose story you would like to read.
Dane | Karin | Nigel | Norman | Liz | Nikki | Valerie | Rod | Ceridwen
We regret to inform you that following a recurrence of his pancreatic cancer, Dane lost his battle with the disease on 29th October 2013. Dane was a brilliant supporter of Pancreatic Cancer Action and he and his family and friends worked hard to help us raise awareness of pancreatic cancer. We considered Dane a friend and we will miss him. We offer our condolences to his wife Charlie and all of his family and friends. Dane was going to update us with the rest of his story, but unfortunately his disease got in the way of that. His story (below) is up to before he had a recurrence of the disease.
As a fit 49 year old, with a healthy exercise regime, moderate drinker and non-smoker of 15 months, with no history of family cancers or any history of personal health, I considered myself fit, healthy and still somewhat invincible, how my life changed. Sunday 24th July 2011 was just like any Sunday morning. I was woken by my young girls, Maddie and Olivia at 06:15, we played until 7ish, I went downstairs and made coffee then went back to bed for a relaxed morning and to watch a film. Upon drinking the coffee I felt unwell and developed a slight pain in my stomach and, like a typical man I ignored this. After eating my breakfast at 8:30, the stomach pain became worse so I went back to bed. The pain continued to worsen and my wife, Charlie, decided to called the doctors and find a walk-in centre in Northampton.
We arrived about 4:00pm and by this time I was struggling to walk with the stomach pain. The doctor dismissed my symptoms as indigestion, and suggested that it was probably due to eating a curry and drinking a few beers the night before. I protested that I had not drank that much and that I had made the curry myself, which was a healthy alternative to a take away option. The doctor gave me some indigestion pills and sent me home. A shocking night’s sleep lay ahead of me and the following morning I decided that I could not manage travelling to work. Instead I went to my local GP – my doctor of 16 years whom I have great faith in. She took one look at me and made arrangements for me to be seen straight away at the local hospital. I arrived at hospital, had my bloods taken and allocated a bed. Still, with severe abdominal pain, I spent three days in hospital without food and water and was hooked up to a saline drip. This was the first time I had been absent from work due to sickness in my entire 24-year working career.
After my third day in hospital the pain began to subside and an ultrasound scan diagnosed acute pancreatitis. I was advised not to drink alcohol for a month and eat less processed food – an interesting comment as I had reduced my alcohol intake considerably and had only eaten freshly prepared food for the last 7 months (a New Year’s resolution my wife and I had managed to stick to). When I was discharged from hospital my abdominal pain subsided and I had no further issues of pain. I went on holiday to Crete with my wife and girls on the 11th August weighing 14 stone 8 lbs (I know this as we’ve laughed after previous all inclusive holidays about who has gain the most weight) During the holiday I experienced a few bouts of diarrhoea, which I put down to the foreign food in the hotel and restaurants we had been to.
I was still abstaining from alcohol as advised from the doctors. On the 22nd August I noticed my stools were light in colour and my urine had changed colour: initially darker and then a constant burnt orange colour. Also, I was finding every time I ate, my food would go straight through me. In the following days, my wife noticed that my skin appeared slightly yellow and that the whites of my eyes were yellow – I just thought I had a good suntan. An itch then developed which intensified as the day went on. We spent that evening browsing the Internet trying to establish what could be causing these symptoms. I know it’s wrong but I believe it’s human nature to fear the worst, and after 3 hours having thoroughly searched the internet, it was clear to me that all of my symptoms pointed to pancreatic cancer. Further more the prognosis was extremely poor.
All information I found highlighted an enormously high fatality rate and that once diagnosed with pancreatic cancer, my time left would be limited to a few months. My wife and I cried, trying to understand the enormity of what we were reading, all the time hoping we would find an alternative diagnosis, something, anything that didn’t point to this monster. The following morning I rang the doctors asking for an appointment upon my return to the UK. Having to wait 2 days, struggling to sleep due to the relentless itching and all the time thinking I have a fatal illness was not pleasant, but my little girls kept me occupied. I arrived home on the 25th August and immediately headed to the doctors’ surgery. My doctor took one look at me and she knew I was unwell.
In the space of a few weeks I had lost a stone in weight, I had unbearably itchy skin and without question, I had very yellow skin and eyes. The diarrhoea I was experiencing was constant and on many occasions I was unable to make it to the bathroom in time. My appetite had diminished and I had very little energy. I told my doctor that I thought my symptoms were that of pancreatic cancer. She tried to reassure me by stating I was too young to have pancreatic cancer and that my symptoms could possibly be caused by hepatitis or other such illnesses associated with jaundice. I underwent a series of blood tests to explore the options and very quickly potential ailments were proving unlikely. It was from these blood tests that irregularities were discovered with my liver: bilirubin level (my results were 158 – a normal reading is usually 20), ALT level – Alanine transaminase (my results were 370 – a normal reading is usually 35) Alkaline phosphate – AFT level (my results were 446 – a normal reading is usually 300). Upon receiving these results, I was referred to Dr. Khan – a consultant gastroenterologist and was seen within a few days. His initial diagnosis based on a CT scan, an endoscopy and colonoscopy was that I had a blockage in my duct between the gall bladder and the pancreas and that an operation to put in a stent was required to unblock this.
With this initial diagnosis, I felt relieved that the cause of the jaundice had been found. An E.R.C.P. was performed on the 7th September and almost instantly my blood results were showing lowered results of bilirubin (127), alt (316) and AFT (298). Unfortunately these results began to rise again within a week and a laparoscopy showed that the stent had failed. On September 14th I underwent another operation to have a larger stent fitted, this time 7 cm long. This stent did not fail and succeeded in reducing the bilirubin, ALT and AFT levels in my blood. By now I was very yellow, incredibly itchy and not sleeping as a result. I continually asked about the cause of the blockage and voiced my concerns that I thought I had pancreatic cancer. However, everyone discounted this, but didn’t seem to want to give me any indication as to what it could be.
I did find out later on, after my diagnosis, that Dr. Khan had thought it was pancreatic cancer but wanted me to be refereed to a surgeon and hepatobiliary specialist for a second opinion. As the operation had a positive effect on relieving my jaundice and the symptoms associated with it, I decided to go back to work. However this proved to be difficult as my concentration was very poor, I soon realised that I was not able to travel the long distance to work due to tiredness and the constant threat of diarrhoea. I then began to work from home, so that I was able to stay close to the bathroom for when the urgency arose. Dr. Khan referred me to Mr. Metcalfe, a surgeon based 30 miles away from home, in Leicester. My initial consultation with Mr. Metcalfe had been the one time throughout all the many visits to hospitals and doctors surgeries that I had attended without my wife. A time when I needed her, but a time I also didn’t want her to hear the terrible news. Dr. Metcalfe advised me that my blood results had returned and that the cancer markers Ca19-9 were negative. Instantly I felt relieved, only to be told in the second breath, that in his experience, it was likely that there was a tumour growing on the junction that joins my bile duct and head of my pancreas.
I was explained my options, in somewhat of a daze, and it was agreed that I would have a Whipple operation. This could only be performed once my jaundice level was within a safe remit, which meant I would have to wait a few weeks. For me, time was of the essence, and knowing I had a cancerous tumour growing inside me, I didn’t want to waste any more time. It was arranged for me to have the Whipple operation on the 14th October, subject to the bloods being acceptable. My drive home was surreal, I did not want to break the terrible news to my wife over the phone and wanted to gather my thoughts, compose myself and be strong for my family. I arrived home and we sat down to discuss what Mr. Metcalfe had said.
Although we were both devastated, we both felt determined that this disease had to be fought and we were going to do whatever it took to fight it. I had a 4 week window whereby I had to reduce my jaundice and for my blood levels to normalise. These 4 weeks were a slight blur as I was unable to sleep, I had persistent diarrhoea and constant itching and my thoughts were all over the place. The itching drove me to distraction; it was relentless. The constant scratching wore the surface of my nails so that they were smooth and I had broken and bleeding scratch marks all over my body. I was unable to sleep, and the few hours a night that I did sleep, I slept downstairs. I was even prescribed sleeping tablets, but these just made me extremely delirious.
I had weekly blood tests and reviews and it was decided that I was unable to have the operation on the 14th October and it was put back a week. But again, this would be subject to the blood results. Finally my blood results proved positive and I was clear to proceed with my operation 21st October. The Whipple operation was clearly explained to me along with the risks that came with such a major operation. The operation would take about 8 to 10 hours and as they could not detect the tumour on either the cat or ultrasound, they were going to open me up and investigate. If it was in-operable they would stitch me back up and report, if there was nothing growing, again they would stitch me back up, if they found something they would take samples of the tissue, send to histology for further review and on confirmation that it was cancer, the surgeon would then attempt to remove the cancer.
I agreed to everything as I realised that cutting out the tumour would be my only chance of beating the cancer. The week leading up to the operation I addressed the ‘what if’s’ and put in place the necessary things I had to. After all, this was going to be major surgery and I knew the risks the operation carried. Saturday 21st October 2012 my wife drove me to hospital on the morning of the operation. I had kissed my children before leaving the house and was fully prepared for the operation.
I was scared, but focused and determined to rid my body of this ‘thing’. In my mind, I knew I was going to beat this and that I would not die on the operating table. My wife was so fantastic and supportive, being with me and holding my hand right up to the theatre door… I told her to make sure she got me the results of the United vs. City match and not to worry as I would see her later that night.The operation was 11 hours long and I know it must have been awful for my wife waiting for the news that I had finished my operation. I awoke in intensive care, unable to move my legs, cables and tubes everywhere. I could not recall much of the first 24 hours, except that I remember kissing my wife and thinking I cannot let this cancer beat me. I was certainly in a lot of pain, but the main thing was that I was here….
The incision made during surgery was across the my entire stomach. It looked like I had been cut in two. It was the biggest scar I had ever seen, but very neat. I quickly made progress and starting annoying the nurses into moving out of ICU and into a normal ward. I was transferred out of ICU within 48 hours, still with tubes and machines Surrounding me. I was determined to eat and persisted until the nurses removed my food tube from my nose. It was very uncomfortable. When the nurses removed it, I filmed this on my mobile phone. I have kept this video as a reminder of how far I have come since my operation. My first meal was tomato soup and bread, which was incredibly difficult to eat. Needless to say my food came back up very quickly and the pain from the retching was indescribable and not something I would wish on anyone.
Gradually, over the next few days eating became more bearable and I was gradually able to lose the many tubes, cables and lines removed from various parts of the body. I delighted in filming most of these experiences, each being a milestone in my recovery. Whether my friends or family liked it or not I frequently sent them short clips to share my progress. I began to feel I had beaten the operation, walking within 3 days and climbing stairs after 4…. I was desperate to go home. During a hospital visit Dr. Metcalf advised me that he had been successful in removing a cancerous tumour of 40mm x 20mm x 10mm along with much of my pancreas, duodenum and other organs. I was also told that the margins surrounding the tumour were clear and that none of my lymph nodes had shown signs of any cancerous cells. Apart from the huge sense of relief I felt at this point, I knew that in order to regain my health it was all down to me from then on. I wanted to be strong for my family, become healthy and ensure that the cancer had no opportunity of coming back. I was discharged after 8 days and I was able to drive after day 14. Not long after, we went to a belated Halloween party. I was the star of the show with all the children present.
By far I had the scariest look with such an impressive scar across my body. The children loved it! Most of November was spent recovering from the operation and coping with visitors, most of whom did not realise how physically drained I was. A huge amount of rest was very much required at this point. Apart from the tiredness, my recovery from the operation was quite speedy and thank fully I didn’t suffer any post operative complications. The only side effect I had to contend with was adjusting to the need to take Creon tablets with every meal. Something I quickly realised was imperative in order for my body to digest food and for me to lead a normal life.
In December I decided to drive to work and surprise my colleagues. Although I wasn’t returning to work, the huge welcoming I received was very uplifting. Over the coming months I was scheduled to receive 6 months of chemotherapy, something I was advised was necessary to ensure there were no stray cancer cells remaining inside me after my operation. I was referred to Dr. Mukagee, an oncologist based in Northampton. He was fantastic, clearly detailing the reason for the chemo, the side effects and the proposed regime. It was agreed that I would start immediately. I was prescribed 6 cycles of gemcitabine, each one consisting of 3 consecutive weeks being administered the drug, followed by one week of recovery. I decided before I started the treatment that I wanted take my family away on holiday, for some sunshine and relaxation before the onslaught. So with confirmation from my oncologist that this was not a problem, I delayed my treatment until the start of January.
I booked for us to travel to Egypt for an all inclusive 2 weeks break, despite not being able to get travel insurance. On reflection I wish I had not been honest with my insurance company in telling them about my operation and condition as they withdrew my insurance policy. We went on holiday regardless. My scar was still in the throws of healing and quite a topic of conversation with fellow holiday makers. My children thought it was very funny telling everyone they spoke to, that I had been bitten by a Shark. My chemotherapy started in January and I decided that I could possibly go back to work 3 days a week. I was beginning to get restless at home and my wife knew I had to do something to keep my mind active. Cycle one of the treatment started and finished with no real events except the occasional night sweat. I initially thought these 6 cycles would be manageable.
After the first cycle I had a CT scan, which showed nothing abnormal and my bloods were regularly clear and normal. During cycle two, my ankles swelled and my night sweats became more frequent. I felt much more fatigued and I experienced episodes of being violently sick about 6 hours after my chemotherapy treatment. These were very unpleasant side effects of the chemotherapy. When the third cycle of my treatment began, I decided that I couldn’t drive myself to work, as I was constantly tired and not able to concentrate for long. My hair began to thin, my veins had decided to rebel against any more needles and the weekly bloods and chemotherapy had caused most of my veins to collapse. By the time I reached cycle four, I was totally fatigued but determined to go to work and not let anybody down… Hindsight is a wonderful thing and I should have stayed at home and slept more, as no one advises you that the chemo mentally altered you as well as physically taking you to the edge; trying to kill any cancer cells before it kills you. Dr Mukagee was fantastic throughout this period giving me a lot of support and carefully checking on me whilst listening to my side effects. My red bloods cell count fell to low levels at one point and he advised bed rest for a few days and delayed the last cycle for a week…
So I took the family to Paris for a long weekend, walking too much and causing lots of swelling to my legs…. My advice at this point is – listen to the doctors as they have best intentions and they do know best. Cycle five was incredibly difficult for me as I was still trying to work three days a week. My red blood cell count dropped dangerously low and the hospital advised me that I should receive a blood transfusion and plenty of rest. As determined as I was, I acted upon the advise of doctors as I was at a huge risk of infection. I was also experiencing numbness to my legs from the knees down. Apparently this is a common side effect, which took 2 months to dissipate.
Cycle six was delayed a week as my red blood cell count was not recovering at an acceptable rate. I spent this time mostly resting and eating any foods that might help with my red blood count, not realising that the chemotherapy had wiped out everything in my body right down to the bone marrow and my body was not producing the new cells needed. After two of the three treatments of the last cycle and with only one more to go, my oncologist decided that my body was not capable of anymore treatments. I was told that any additional chemotherapy had the potential to cause more harm than good. This marked the end of my treatment. My hair had thinned, I looked ill, I felt ill, but at last I had finished the chemotherapy. June 2012 was the month of my much anticipated ‘end of treatment’ CT scan and blood tests and my post-operative consultation with Dr. Metcalfe, who clearly told me there was no trace of any cancerous cells. He advised me about many do’s and don’ts in regards to my long term health, but the main and most important thing to me was to hear that I was clear of my awful pancreatic cancer.
To hear this was extremely emotional, not only for me, but for all of my family who had been on the terrible journey with me. Throughout July and August I have spent my time maintaining a healthy appetite, doing light exercise and trying to gain weight. Stubbornly, I remain at 11 stone 9lbs. As my body is ridding of the chemotherapy I am feeling stronger and less fatigued, my hair has started to thicken, my mind is becoming sharper and I feel myself becoming the person I was before my diagnosis. My doctors have recommended I do only light exercise for about 6 months so my body recovers gradually. With this in mind I have decided to embark on a fitness programme with a personal trainer so that I will be fit enough to take part on the “striding for survival’ walk in November, the first of many charity events I would like to take part in to say “thank you” to the fantastic team of surgeons, doctors, GP’s, nurses, friends, colleges, family members and my devoted wife for all the support, surgery and recovery I received in battling this disease.
By getting fitter and involving myself in more fund raising events over the coming years I hope the timeline of my survival years from pancreatic cancer will become longer and longer. I am 12 months from being diagnosed, so I am already one of the 18% of survivors for the first year. I remain positive that I am cancer free and I look forward to my 5th anniversary party and to be officially one of the 3%. I am far from blasé about the past year and the cancer, but I am just focused on fighting and being healthy, seeing my children get married and loving my wife everyday. Every morning I wake up and I know how lucky I am to have beaten this silent killer.
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Karin, 30, was diagnosed with pancreatic cancer less than two weeks after giving birth to baby Jethro
We are very sorry to hear today (11/11/2013) that Karin has lost her battle with pancreatic cancer, age 32. A young mum, Karin was taken too soon. We offer our condolences to Karin’s family and friends.
My name is Karin and I was diagnosed on the 23 of February 2012 with a large mass in the head of the pancreas. This turned out to be an adenocarcinoma. I was only 30 years old and just had my first baby – a boy – and had been fit and healthy (to my knowledge) before the pregnancy. I don’t smoke, rarely drink alcohol and have never done any drugs. My paternal grandfather had died of pancreatic cancer in his 70s, but he was a heavy smoker. I also had a maternal aunt that died of pancreatic cancer aged 54. I am a doctor and am married to a wonderful man, Kevin, with our first child having been born just 13 days before my diagnosis. A lovely baby boy who we called Jethro. My story starts during my pregnancy. As everyone expects, especially with a pre-existing back problem (Scoliosis), I got some back pains in the middle of my back in my 2nd trimester of pregnancy. I was told that this was related to my Scoliosis and was prescribed pain killers and physiotherapy.
I had to stop working as my back pain became debilitating in my 25th week of pregnancy. The back pain continued to get worse and I was prescribed heavier painkillers and was told to attend for massages and acupuncture. All of these helped a bit until the pain got worse again. The last resort for my “back pain in pregnancy” was a TENS machine. This helped if I put it on its highest setting so I wore it 24×7. When I reached my 34th week of pregnancy I had another very bad period of back pain and was told to attend the maternity services. They were worried that I had gone into early labour. While in the department I started itching really badly so they did some blood tests. Turned out my liver function was going off just a little bit. I was admitted that night.
After an ultrasound scan of my liver and a whole battery of tests which all came back negative it was decided I had cholestasis of pregnancy (liver disease in late pregnancy). I remained in hospital and my liver function was checked daily. It continued to deteriorate and I started getting jaundiced. At 35weeks of pregnancy I was canary yellow and terribly itchy so they decided to deliver my son early to try and deal with the liver. Thank God I had a healthy baby boy by caesarean section on the 10th of February. After delivery I was told that the liver may take a few weeks to return to normal and was discharged home after 4 days. I was seen by the community midwives who obsessed over breastfeeding and were mostly interested that I am passing urine and opening my bowels, but completely failed to register that I was telling them that I was feeling worse and that my bowels were increasingly abnormal.
I was losing weight rapidly and wasn’t absorbing any of my food. Since delivering my son I had lost 20 kilos. After a week of these fruitless dealings with the community midwives and being discharged by them to be followed up with a totally unrelated blood test in a few weeks, I went back to the maternity unit asking for more blood tests in preparation for my out-patient appointment on the following day and went home. I got a phone call at 8.30PM that same night from the maternity unit saying my liver had deteriorated significantly and that I should come to the hospital straight away. While my husband was listening in on this phone call he walked around our bed and found our son who was lying in his crib going blue in the face and not breathing.
So while I was still on the phone to the hospital about my liver I started CPR on my 1 week old son. In those minutes I felt like my life was over. My colleagues called an ambulance from the other end of that phone, autopilot took over and I don’t know how but my son started breathing again by the time the paramedics arrived. We both went to hospital together in the ambulance that night with my husband following in the car. Our son was kept in the paediatric unit and my husband stayed with him while I went to the maternity unit alone with my worries about my baby and my own failing liver. After 24 hours our son was discharged and has been fine ever since.
He’s thriving and the joy of my life! Both my son and my husband joined me in the maternity unit where we were to spend the next 3 weeks. I had all the liver tests repeated and was booked for a repeat ultrasound scan. By this time I was truly a deep yellow with my jaundice, had radioactive-looking pee and was absorbing absolutely none of the food I was eating. I had lost loads of weight since delivering my son and had a bone-deep itch all over my body. This second ultrasound scan showed only mild dilation of the common bile duct and it was thought that gallstones were the cause. A MRCP was done immediately after the ultrasound scan and this is where they first saw the mass in the head of the pancreas. By that time my parents and sister who all live abroad came to spend most of their days in hospital with me, too. My obstetrician and surgical colleagues came into the room together to tell me that there was a mass in the head of the pancreas. In that moment my heart dropped, my life shattered in front of me and the first thing I thought was what I had been taught at medical school that “Painless jaundice is cancer of the pancreas until proven otherwise”.
No one wanted to believe this diagnosis, not the obstetric consultant, not the consultant surgeon and definitely not the gastroenterologist. I was told it could be an auto-immune condition, it could be lymphoma but no one wanted to believe that a person like me and at my age could get pancreatic cancer without the lifestyle of substance abuse that usually precedes it. The cancer was 4x4x4cm big at that point. After being diagnosed I got a staging CT scan done and had to have a blood transfusions as my blood counts had dropped. At this point it looked like the mass in the pancreas was the only abnormality. In the end the surgeons in the district general hospital where I had been diagnosed decided to refer me to the specialist pancreatic team. I was transferred to their hospital the same week. Once under the care of the specialists, I got an Endoscopic Ultrasound Scan (EUS) done where they took several biopsies to diagnose what type of mass this was and a few days later was told what I had suspected all along – I was diagnosed with a well differentiated adenocarcinoma.
Because I was still very jaundiced and itching like crazy, it was decided to put in a metal stent where the cancer was causing obstruction of the common bile duct. This was to relieve my jaundice. I was told that I was a 1 in 10 million case and that there were actually only about 15 cases worldwide documented that could compare to mine… My surgical team at the Glasgow Royal Infirmary was amazing. They were researching and liaising with other pancreatic teams worldwide to see if there was anything new and better available than the standard procedures they were used to. They wanted to cure me, not just give me more time. So after having discussed my case thoroughly they decided to go for neo-adjuvant chemotherapy (chemotherapy before surgery) first and then proceed with surgery once things had shrunk down.
At the meeting with my clinical oncologist we discussed all the options and chemotherapy regimens available. The surgical team had found a newly tried chemotherapy regimen for pancreatic cancer that seemed to have very good outcomes (when compared to the dismal statistics for pancreatic cancer). It is a combination of intravenous Folinic Acid, Irinotecan, Oxaliplatin and 5FU called FOLFIRINOX. This would be administered every 2 weeks. Unfortunately I had to wait for my liver tests to normalise before I could start with chemotherapy. So the wait was on. During this period of waiting I had a PET-CT (a scan using a form of radioactive glucose) scan done. Unfortunately they found active spots in the liver on this CT and so I was sent for a specialised liverMRI. This confirmed the worst possible – I had liver metastases. Not only did I have 2 big metastases in the right lobe of my liver but I also possibly had multiple micro-mets in the left lobe of the liver. I had just managed to pick myself up after getting the diagnosis and here was yet another blow. With liver metastases I was now an inoperable case.
I was devastated. I used to look at my son and husband and cry. I felt like I would never see my son grow up and that I was letting my husband and son down in the biggest way possible. Being a doctor myself I know all the statistics and how dismal my outlook is. When I spoke to my surgical team about it they spoke realistically but gave me hope that the chemo would shrink the liver mets, hopefully enough to allow for liver resection as well as surgery for the primary cancer. They showed me the figures for the FOLFIRINOX regimen, especially in the group of patients who had metastases and it made me feel a bit more positive. I would beat this cancer and not let it get in the way of living my life.
My oncologist was cautious in the discussion of this chemotherapy regimen at first as it had never been used in Scotland before. But we decided to go for it together. I will never forget that he was willing to go down this unknown road with me to give me a better chance. He took all the precautions to try and make the regimen as tolerable as possible and gave me the confidence to step up to the plate to start my fight. Finally my liver tests normalised and I could start chemotherapy. My first cycle started off badly – I had been pricked with needles so often these previous weeks that they couldn’t get good vascular access for the chemo to run through. I was lucky as the vascular access team decided to squeeze me onto their list to insert a PICC line.
So off I was sent to get this done. Well, my body had decided otherwise. After 3 hours in that department with countless attempts to get a PICC line into my arms the nurse decided to insert a Hickmann line instead. Success on the first attempt. In those 2 hours I had been reduced to a crying wreck. I was ready to go home not to get my first chemo… But the nursing staff was extremely nice and my family was there for support and I managed to pull myself together enough to get my chemo. Overall I think I tolerated the chemo surprisingly well. In total I got 9 cycles of chemo.
I would feel like I’d been hit by a bulldozer the first night of my chemo. My husband and mum would take me home that night, undress me and tuck me into bed. The next morning I would already be a bit better and I would get steadily better from there. I would then self-inject the GCSF (Granulocyte-Colony Stimulating Factor – used to stimulate the bone marrow to produce more white blood cells which can become depleted whilst on chemotherapy) for the week after chemo – this was so my bone marrow would be stimulated to produce more blood cells so I wouldn’t be so prone to serious infections. I didn’t suffer too much nausea and it was very manageable with anti-emetics (anti-sickness tablets). I didn’t have any diarrhoea at all. My taste and sense of smell changed though and that was quite challenging. I had to add lemon or juice to my water to get some taste back and shunned quite a few foods which I had previously eaten without a problem. I still managed to keep eating though and always managed to regain the weight I’d lost at chemo within the following weeks.
Another side-effect from the chemo was that at first I would get some tingling in the hands and feet if they were exposed to the cold. Towards my 9th cycle this altered sensation became permanent and got worse even after the chemo stopped. I have now lost the feeling in my hands and toes and they constantly feel like they’re asleep (this is sometimes referred to as peripheral neuropathy).But if I manage to survive in the long run then this is a small price to pay. I also lost most of my hair. On the days I was taking the bone marrow injections I would have some back pain or pain in the long bones (arms and thighs mostly). My back pain, which was now correctly identified as pain from my cancer, was gone after the first chemo. That was a very welcome relief. So overall my chemo was all very manageable. The first time it was a big scary thing, but then I knew what to expect. Sometimes I lie awake at night and “speak” to my cancer.
I tell it to get the hell out of my body – there’s no place for it in me. I don’t know if it works, but it helps me hang on and fight. I managed to get away to visit my extended family abroad in between chemo’s and this gave me a huge boost for my morale. I’ve experienced lots of love and compassion, lots of gestures of friendship and encouragement from the most unlikely corners since I was diagnosed. I am ever grateful for that. My dear friends and family, you cannot know how much it means.
During my chemo I had repeat scans every couple of weeks. The first scan was only after my 3rd cycle of chemo and everyone was very surprised that there was already significant reduction in the size of the primary tumour and the 2 larger liver metastases. The micro-mets in the left lobe of the liver had disappeared! I was ecstatic about this news as it very tentatively potentially put me back into the operable category. My scans continued to improve with continued shrinking of the pancreatic tumour and metastatic spread limited to the right lobe of the liver and these secondaries were shrinking too. Seeing how my liver was affected, too my team decided to refer me to another pancreatic unit that also excelled at liver surgery to give me the best possible chance at surgery and survival.
When I first met the lead surgeon there he was very cautious, quoting all the bad statistics for pancreatic cancers, their surgery, mortality rates and all the horrid things I already knew myself about pancreatic cancer. But despite all this he was willing to offer me surgery if certain criteria were met. I was so relieved that I was back in possibly operable territory! He outlined the plan that after my last chemo a few weeks would have to pass to allow the chemo to drain from my body. Then he would do a portal vein embolisation (PVE) procedure which would hopefully lead to the good part of my liver growing so that after 4-6 weeks when it had grown enough I could get the Whipple’s procedure as well as an extended right hepatectomy (chopping off of the diseased part of the liver) in one go. I had some more scans a few weeks after the chemo was done which showed continuing shrinking in both the size of the primary and the metastasis. This was what I had been waiting for to get the PVE in preparation for the big surgery! Unfortunately my father-in-law passed away a few days after the scan.
This hit us very hard, especially with us living abroad. We managed to make all the arrangements and flew home. We got back from abroad the day before I was due to be admitted for the PVE. So I unpacked my luggage and packed my hospital bag instead and off we went to get this done. In my head this was always the “small procedure” before the big surgery. But in the end they fiddled around with my liver for almost 4 hours! Not that I felt much as they sedated me for the length of the procedure. It was deemed a success and I was discharged home. I was recovering well when on the 6th day after the procedure I just didn’t feel “right”.
I asked my GP to come out who couldn’t put his finger on what was wrong and we agreed that we would wait and see what happened. By 6PM that night I had a raging fever of 39.9 Celsius. Needless to say we went straight to hospital. There the suspicions were that this could be infection from my Hickmann line, from the liver after the PVE, biliary sepsis… After more scans, tests, heavy antibiotics and removal of my Hickmann line, it was thought that I had a nasty gram negative infection, most likely from the line. I had been on heavy antibiotics since admission with my temperatures still spiking every now and then. At least a repeat CT scan showed that the tumour has continued shrinking even though my last chemo was now almost 2 months ago. This gives me hope that I will proceed to surgery yet.
After almost a week of this nothing conclusive was found why I had had this fever and was discharged on oral antibiotics. Through it all my family, in-laws and friends and above all my husband have been amazing. My mum gave up her job so she could be on stand-by to hop over from Brussels on my chemo days and back again to support me and my husband with the care of our new son on those days or whenever crisis hit. My dad and sister came for support when their work allowed. My husband’s work has been very understanding with us, letting him work from home. This has allowed him to be an amazing carer to both me and our son. My father and husband have also been doing daily and tireless research into treatments, alternative therapies, new research and keeping my spirits up with survivor stories. My mum was always there on the end of a phone, ready to hop on to a plane when a crisis moment struck or when another chemo was due. It helped a lot knowing she could be here in a few hours. My family, friends, parish and even people who don’t know me at all are apparently praying for me to regain my health. This has been an amazing and humbling experience. One phrase that I picked up somewhere and that stayed with me is this: “after being diagnosed with cancer, every day after that diagnosis you’re already a survivor”. This has helped me keep positive.
I also keep telling myself that “where there’s life there’s hope”. I plan on living for quite some time yet and I’ll prove the statistics wrong. According to statistics I shouldn’t have gotten this cancer in the first place after all! To be honest, this waiting is the hardest part of it all. Now that my chemo is complete and the PVE done I have to wait for the liver to grow, wait for the surgeons to discuss my case at their team meetings and let them to decide whether to operate or not. And all that time I’m doing nothing and the cancer could be growing and spreading again… Karin, September 2012
Updated 16th December 2012
So the PVE was done and I had overcome another hurdle. Now it meant waiting for the liver to grow sufficiently for surgery to be performed. My husband had by now done countless hours in internet research and started me, with approval from my oncologist, on a mix of supplements of antioxidants. After 5 weeks I got a repeat of my scans done which would determine if I would proceed to the next step – a staging laparoscopy to assess the situation “on the ground” and under direct vision. The scans were done and this is the first time that chemotherapy-induced steatosis (fatty liver) of the liver was mentioned.
I worried, but thought the liver is growing so it shouldn’t be a problem. While we were waiting for the future liver remnant volumes to be calculated my Edinburgh surgeon decided to go ahead with staging laparoscopy in preparation for possible surgery. So a date was set. Kevin and Jethro booked into a hotel for the night of the procedure to be close and off we went to get this done. The laparoscopy went by without major incident, but left me very upset as the surgeon said my liver was very very fatty in appearance, to the point where he wasn’t sure I would survive should he go ahead with liver resection. He said he had taken some biopsies but was very concerned that the quality of the liver was not up to the planned procedure.
On the positive side, he said the disease appeared stable and there was no peritoneal spread (spread into the abdomen). Having been given the run-down of the highly risky proposed surgery and knowing the horrid alternative, we rushed to make our wills and Powers of Attorneys. Another harrowing experience, having to think of disposing one’s assets and securing pensions and moneys for the event of my death.
By this point all my emotional reserves had been exhausted and I can tell you that I hit a low point. I saw only obstacles. My surgeon wasn’t very hopeful either and kept insisting that at most he’d be operating to gain me some years, never cure. He told me that he was afraid of robbing me of the years I have by proceeding with surgery and generally made me feel miserable and hopeless. I took the opportunity and went home to Malta to start setting up my apartment, if not to enjoy myself, then at least to leave a legacy of my tastes of furniture and of self for my husband and child in the future. I can still remember clearly one evening at my aunts’ house where I was asked if I wanted any milk in my tea. And I remember being offered the long life milk and me thinking and even saying – no mine is all “short life”.
I was in a crisis of faith but was still hanging onto the hope that I may be offered surgery with a despair of a drowning person clinging onto driftwood for survival. I had gotten in a second opinion who had proposed staged surgery. So my hope was hinging on that: deal with the primary and get that bad boy out and then deal with the liver later once it regenerated. During my time ordering my kitchen and getting suppliers to give me ideas and trying to get everyone to commit to as quick a delivery as possible, not knowing how much time I have left, gave me back some of my hope and brighter outlook. I felt replenished and must even admit that at times it was fun. I spent some time in our apartment and felt good being surrounded by the love of the family and friends. I got back and was ready to face this surgeon.
I was young, otherwise healthy and had a child under 1 year. This surgeon could not refuse me potentially life-saving surgery! WRONG!!! I was barely through the door when he said he doesn’t feel he can offer me surgery. With him it was all or nothing and all was not an option right now as my liver was too damaged. That by doing staged surgery he would be putting me through major surgery that might shorten my life and severely impair my remaining quality of life and I may never make it to liver surgery in the future. Good bye, go home to die, and by the way – sorry for calling your son a girl. I was shell-shocked. Devastated. My world had ended. In the car on the way home instinct took over and the first thing I did was call my Glasgow team asking for an urgent urgent call back. I was barely coherent on the phone to the poor specialist nurse. As soon as I arrived home I started writing emails to specialists asking for second opinions in Liverpool, Southampton, Malta.
The Pancreatic Cancer Action Charity founder Ali Stunt was simply amazing. She called me, went through what had been said and organised introduction to another specialist in London. I called my Oncologist Dr Grose, who spontaneously spent an hour on the phone with me, going through possible scenarios, options and ways forward. In the end he too admitted that staged surgery would be something he could support and he would provide me with chemo to stabilise the disease post-operatively until the liver could be dealt with. That gave me renewed faith, I knew I was asking for nothing short of a miracle, but it seemed a little more achievable after that phone call. In the medical world there’s no prejudice like having been refused surgery in one place, to be refused at the next! Those days are days I don’t wish on anyone. The days were filled with activity, writing, phoning, mobilising everything and everyone to get a chance, a shot at surgery and the nights filled with bone deep despair. I spent a whole week crying.
I didn’t know one person could shed so many tears. My husband and I prepared a whole sheet of questions and backing up all our arguments for staged surgery with medical articles and evidence in preparation for when we would meet with these other doctors. I used to look at my husband and in my head see him crying over my grave. I used to look at my son and give my husband lists of things to look out for when he is growing up. I used to look at my parents and say sorry for making them worry and in anticipation of putting them through my dying. I was invited to speak to my surgeon in Glasgow, Mr Mackay before his clinic that same week. We got in and he could see we’d had a rough time.
I took my little son with us that day so he would see our little family that was being left to die. We went over the reasoning from Edinburgh. And then I started to present my case in favour of staged surgery. We discussed the ethics, the technical difficulties, discussed mortalities and the possibility of morbidity post OP. I said to him, I didn’t care what happened intra- or post-OP as surgery was my only potential chance at survival. Without surgery I would die anyway so I had nothing to lose. When he decided to look at my most recent scan pictures, now done over a month ago, I asked him for copies of them as other surgeons needed them to assess whether they would operate. At that point he turned around and said – Wait a minute – if anyone is going to operate I would prefer it would be us here in Glasgow.
I couldn’t believe my ears. I stuck my paper with questions and arguments in my pocket and from there on, an hour later, having reviewed all my scans on the spot again with the radiologist too, he thought it could be done! My relief was so unbelievable. I didn’t dare allow myself hope! He put one condition on me – that I have a repeat scan and if that still shows that the tumour is resectable then he would go ahead and remove it 10 days later. The date of the scan arrived for the Wednesday, their meeting was Thursday. I was so nervous I couldn’t sleep, eat and was a nervous wreck. I couldn’t stand it any longer and called my oncologist who was delighted to tell me I was going for the Whipple’s the following Tuesday!!! My chance had come. What I was so desperately fighting for was finally going to happen.
The next day I had my surgical pre-assessment. On Monday evening I was admitted and on Tuesday I got the surgery. I never asked what he would take away and how. What did it matter?! As long as that bad boy cancer was coming out I would deal with whatever was left afterwards. Mr MacKay operated on me for 10 straight hours and he says I nearly killed him in the process. I will be forever grateful to him for performing the surgery on me! He took away my Gallbladder, my head of Pancreas, part of the Portal Vein and my Duodenum. Having had all of these procedures done now I can honestly say that nothing quite compares to having a Whipple’s! I was lucky and started on an enhanced recovery programme and got home on day 6 Post OP, fully mobile and well on my road to recovery.
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It is with much sadness that we have to inform you that Nigel has lost his battle with pancreatic cancer – He will be missed enormously by all of us here at Pancreatic Cancer Action.
September 27th 2011
This is Nigel’s story as he told it to the Mail on Sunday, published on 16th January, 2011. Nigel has kindly given us permission to use it.
It had been a gruelling couple of weeks filming, yomping through the ice and snow with heavy cameras and tripod in one of the remotest places in Britain – the most southerly island of the Outer Hebrides, Barra, sixty miles off the wild north-west coast of Scotland.
We’d been shooting for a documentary series called An Island Parish for the BBC, and now my cameraman Aidan and I were sitting in the tiny air terminal beside the sandy beach where the planes land from Glasgow, heading home to London for a few days break.
Suddenly I noticed Aidan was leaning forward and looking at me in an odd way. ‘I hope you don’t mind me saying,’ he said awkwardly, ‘but your eyes seem to have turned slightly yellow.’
I checked in the loo mirror, but it was quite gloomy and I couldn’t really see anything wrong. At home in my flat in Islington that night, we had the lighting low and Sally Ann didn’t notice anything.
That all changed dramatically the next morning. ‘My God, you’ve turned completely yellow!’ Sal shouted in alarm when we awoke. It was weird staring back at my new, totally yellow self in the mirror; I had assumed I was in the peak of health, and had felt no aches or pains at all.
Things then moved incredibly rapidly – and never again will I curse the NHS. ‘You’ve got jaundice,’ said my GP an hour later. It was a Saturday, and they’d sent me straight in to his surgery. ‘It’s often caused by gall-stones. Not a huge problem but you need attention immediately. I’ll make an appointment for you to see someone at UCLH.’ University College London Hospital is my local general hospital. This was my first big piece of luck. I didn’t know it as the time but UCLH is a world leader in treating the liver and pancreas.
‘What, sometime this week ?’ I asked.
‘No,’ he said, pausing, and looking at me kindly. ‘I mean now. Right now.’
A few hours later I was in the ward being examined by a surgeon. It all seemed slightly surreal. I’d never felt better in my life.
One of the common causes of jaundice is blockage of the bile duct, which normally carries bile from the liver to the gut. The liver extracts potential toxins from the blood, modifies them, and passes them into the bile so they can reach the gut and be excreted from the body. If they can’t escape, the toxins then start to ‘leak’ back into the blood stream, and one – bilirubin – produces a yellow colouration, which is usually visible first in the whites of the eyes, and later in the skin.
An endoscopic camera examination revealed that in my case the blockage was the result – not of gallstones – but of a tumour in the pancreas. Sal and I were horrified to receive this news, well aware that it could well be cancer. A quick trawl of the internet revealed that pancreatic cancer has an appalling prognosis for most people. We passed the three week wait for the operation in a kind of dizzy dream, heightened by the fact that still at no stage did I feel remotely ill.
In fact, as it turned out, my rapid diagnosis was my second big piece of luck. Early symptoms of pancreatic cancer disguise themselves behind less alarming problems like weight-loss or diabetes, and are notoriously difficult to identify. Often it is simply too late by the time doctors realise what it is. The fact that my tumour had blocked the bile duct and made its existence obvious was a blessing in disguise. Of every one hundred patients diagnosed with pancreatic cancer, only ten can be operated on – so I was already in the ‘lucky’ ten per cent.
The operation is called a Whipple’s Procedure and in my case it lasted seven hours. Led by an outstanding surgeon, Charles Imber, the team removed not just the tumour but part of my pancreas, gall bladder, and parts of the bile ducts, bowel and stomach, in an attempt to try to prevent any potential spread of the tumour.
I was in intensive care for a few days, then moved to the ward. The registrar broke the news from the pathology lab. ‘I’m afraid your tests reveal that the tumour was indeed cancerous,’ he said. ‘But we have at least managed to cut the whole cancer out.’
I suppose Sal and I had been wildly hoping against all the odds that the tumour was benign, so knowing that this form of cancer has a high chance of recurring, in a way this was the lowest point. The prospect of my imminent death now seemed a real possibility; most pancreatic cancer patients die within six or eight months of diagnosis. Of course, contemplating our own demise is something most of us put off for as long as possible, but now I was being forced to confront it in a most unexpected way. It was almost more of a worry trying to imagine how my friends and family – and particularly Sal – would take the news. In fact, whatever their private thoughts, everyone was unbelievably upbeat and supportive.
Having stared death squarely in the face, I decided to put it back in its box and concentrate entirely on recovering from the operation. I’d been told that it was vital to get out of bed and walking as quickly as possible – even though this was painful at first – to get the lungs working and so help stave off infection. I took a few more steps each day, eventually pounding the ward and later the stairwells. Seeing the other patients, many of whom seemed to be in a far worse state than me, made me realise that I was even now lucky to be alive. I met a man who had undergone the start of the same operation as me, but he’d been told that the surgeons were unable to remove his tumour because of its proximity to a major blood vessel. Later, I saw the delight on his face as his wife and young children arrived for a visit. He too looked the picture of good health.
In fact, of the ten out of a hundred pancreatic cancer patients surgeons can operate on, in six cases they are unable to remove the entire tumour; so I was now in the ‘lucky’ four per cent.
Also hugely helpful was the fact that even in the ward I was able to keep on working. If I was a teacher or employed in a bank, I would no doubt have been signed off for months. The offices of my tv production company are just down the road from UCLH, in Soho, so a constant stream of colleagues were able not just to visit, but to bring in scripts and DVDs of rough-edited programmes I was then able to work on in bed. Within a month of the operation I was back on the Outer Hebrides with Aidan, filming the main characters on our new documentary series, Father John Paul Mackinnon, the Catholic parish priest on Barra, and his colleague in the next-door parish of South Uist, Father Roddy McCauley, who suggested celebrating my return to the islands with a wee dram, and promising to light candles and say prayers for me at Mass.
My treatment wasn’t over. I started a six-month course of chemotherapy at a neighbouring north London hospital, the Royal Free, designed to attack any rogue, post-operative cancer cells that may still have been whizzing around my system. I was on a trial regime; chemo pills every day for three weeks, along with a once a week, half-hour chemo drip; nothing for the fourth week, to allow the body to recover. Mercifully there were few side-effects. My hair thinned a little but not noticeably. The chemo tries to destroy cells which replicate (the principle characteristic of a cancer), so the palms of my hands and the souls of my feet (where the skin cells naturally get worn quickly and automatically replicate themselves) suffered badly. I had terrible blisters, which made walking very difficult on occasions, and handshakes could sometimes be embarrassing. But overall, I was able to function pretty much as normal, which I’m sure was a major contribution to my rapid recovery, both physically and mentally.
In late November last year I had a CT scan, and this, along with the results of blood tests, showed that the chemo appeared to have done its job, and as far as medical science was concerned, there was now no evidence that I had any cancer at all inside me. The consultant was beaming when she gave us the results. ‘Go away and enjoy Christmas,’ she said, and we all laughed idiotically. I guess they spend a lot of time dishing out bad news in the oncology department. ‘We’ll be monitoring you every three months with a scan and blood tests. See you next February. Have fun.’ Outside the hospital, Sal and I hugged with relief.
Again, the next few days had a surreal quality. I had been in the hands of doctors since early February, nearly ten months, which meant I had handed over responsibility for my life entirely to them – now I was on my own, feeling a little lost and lonely.
Talking to other ‘survivors’ helped. I had coffee with an inspirational woman called Ali Stunt, a mother of two young boys, who had surgery for pancreatic cancer three years ago at the age of forty-one. Ali had had months of unexplained back pain, and was only diagnosed after a CT scan paid for by her private health insurance. ‘My surgeon has said that had I waited four weeks for the scan I would probably not be here today,’ she told me. ‘Early diagnosis of this killer would help save so many lives.’
Ali went on to found a charity called Pancreatic Cancer Action to try to increase awareness amongst doctors and patients alike. She’s now become something of an expert on the subject. ‘The general population need to know about it, the symptoms and the risk factors – smoking, obesity and hereditary links.’
Like an alcoholic, I’ve realised I’ll never be ‘cured’ of cancer, and I am very well aware that there is a real risk of recurrence, but if you can get through the first two years your chances of survival increase dramatically. Never has the cliché ‘take each day as it comes’ been more relevant. It has been a joy to return to ‘normal life’. I wake each morning feeling more ambitious and vigorous than ever. And yes, all those moments I used to take for granted, I now relish; the warmth of the winter sun on the back of my hand, the sip of a fine wine, the smile of a stranger on a bus.
Has it changed my life? No. I have a job I cherish and a family, friends and a partner who I love. All I have ever wanted is the chance to continue as before. If I can function, I can be happy. Has it made me appreciate life more? A hundred times. There is no past, there is no future, so the saying goes, there is only now – and you can either seize the moment, or not.
Nigel, January 2011
We are extremely sad to hear that Norman Whitwood, Pancreatic Cancer Action supporter and friend, passed away on 24th October 2018 after a 6 year battle with pancreatic cancer. Norman tells the story, in his own words, of his experience with pancreatic cancer.
I had been running for three years when in May 2012 I suddenly felt unwell in that way when you know it is something different! I was in Falmouth for a few days following the Jubilee weekend, looking forward to running somewhere different. But I just didn’t feel up to it, which was unusual. I later realised that I was beginning some of the typical symptoms of pancreatic cancer – vague weariness, loss of appetite, constipation and yellow stools. When I got back I went straight to my doctor and she ordered a comprehensive range of blood tests.
Sadly, Liz passed away in 2014 after a two year fight with pancreatic cancer. Her story lives on to remind people that: you know your body and if you feel like something is wrong, it is okay to pursue a second opinion, either for free via the NHS or by other means.
Liz was diagnosed with pancreatic cancer in April 2012. She was only 48. Her doctors in the UK prescribed palliative care which led her to seek a second opinion in Heidelberg, Germany …
On the 9th March 2012, I had been for lunch with a friend to celebrate her birthday. Earlier that day I had been to my GP and had a routine blood test. At 9 pm I received a rather strange call from the lab asking if I felt alright, and whether I had any abdominal pain, or was jaundiced. I began to feel a little uneasy, and it seemed strange that someone was calling me from the lab so late on a Friday night. My teenage son needed picking up and while I was out collecting him the lab rang again and suggested that I should go into Accident and Emergency.
My name is Nikki and I’m a 52 year old woman living in Reading, Berkshire. I was born and grew up in New Zealand and had a healthy, active lifestyle which continued when I emigrated to Britain in 1990. The only times I’ve ever been in hospital was having my appendix out when I was 21 and having my collarbone repaired after a horse riding accident in 2007. Both were short stays. That all changed in April last year. I’d been suffering the odd episode of what I thought was heartburn which I didn’t take much notice of, being a lady of a “certain age”. However, one morning I fainted in the shower which I’d never done before (the fainting, not the showering!) so I went to my GP who wasn’t particularly concerned about the fainting but perked up when I mentioned the heartburn. He recommended me for an endoscopy which was booked for 22 May.
I look back at this as the beginning of the process that probably saved my life. Two weeks before the endoscopy appointment, I woke up one night feeling like I’d been kicked by a mule in my stomach and the pain did not go away. After three days of on-off excruciating pain, my husband Simon took me to A&E at the Royal Berkshire Hospital and, despite a battery of tests, they found nothing. However they didn’t check my stomach due to me mentioning I already had an endoscopy booked. I had the endoscopy on 22 May as scheduled, having had more attacks of pain in the meantime. The procedure revealed my digestive tract to be perfectly healthy and the consultant who did the endoscopy recommended I have an ultrasound to check my gallbladder as he felt I may have had gallstones.
Two days after the endoscopy, I collapsed at work and was rushed to Hammersmith hospital A&E (I work in London). Again, tests showed nothing wrong so I was not admitted and told to go back to my GP. He scheduled an ultrasound for 22 June and I was signed off work for a month as I was having repeated bouts of extreme pain with occasional nausea. The ultrasound showed there was nothing wrong with my gallbladder but that the head of my pancreas was inflamed. I was referred to the Upper GI department of the RBH for treatment and a CT scan which took place on 14 July. Again it just showed that the head of my pancreas was inflamed and I was told I probably had pancreatitis, so I was referred to a pancreas specialist within the RBH.
I was signed off work for another month during which I continued to have attacks. I had weekly blood tests which only showed elevated inflammatory markers and slightly raised sugar levels. On 17 August I had an MRI scan which still only showed inflammation of the pancreas head and by this stage my consultant was convinced it was the beginning of idiopathic chronic pancreatitis. He was baffled as to why I should have it and constantly quizzed me about my drinking habits – I have to say I have never been much of a drinker and I found that pretty insulting and he seemed to be implying I was lying. I know my husband is still angry about this fixation of the consultant’s. I have to say this period is the only time I felt I didn’t get exceptional care and I credit my GP for constantly pushing for more tests.
From this point on I was just being monitored with a provisional diagnosis of early chronic pancreatitis. Since my initial attack in May I was following a strict virtually fat-free diet and drinking plenty of water. By now I had lost over two stone in weight, most of it in the first month of the illness. I was convinced I had cancer but none of the myriad tests I had showed anything. I had an EUS (endoscopic ultrasound) on 13 Oct that showed no change. The consultant tried to take a biopsy but failed. I carried on with weekly blood tests as before and went back to work full time. I continued to have discomfort and the occasional episode of pain but this seemed to be controlled by the diet and by getting on with things. I had accepted this was how my life was going to be, having researched pancreatitis which is a horrible condition.
Another MRI on 30 Nov showed no change and my life carried on with occasional discomfort and a feeling of not being 100% well. In January this year I had a week where I had sudden debilitating attacks of intense pain but these never lasted more than ten minutes. Simon and I went on our planned holiday to New Zealand in February to visit my family and looking back, I’m convinced I was so focused on getting out to see them (the holiday was booked a month before I became ill), plus the restricted diet, that my body actually suppressed the cancer for a time (this is not medical opinion, just how I feel). Now my cancer story really starts.
The holiday went well despite having some days of feeling ill and one painful attack. However on the day before we returned to the UK, I felt very unwell and never felt better even after coming home. I thought I’d picked up a virus but a week after coming back (1 March) I developed jaundice and unbearable biliary itching. I have to say, that was the worst thing out of everything that’s happened! Luckily I had a follow-up with my biliary hospital nurse on 2 March and she ordered an “emergency” CT scan which could take up to two weeks! After two days of extreme discomfort my marvellous GP paid a home visit (very unusual) and put pressure on the hospital to scan me which happened on 10 March. I then had a call from the biliary nurse on 13 March telling me I needed an urgent ERCP to fit a stent to relieve the jaundice and this had been booked for 17 March.
However the next day (14th March) I took a turn for the worse and was admitted to hospital with biliary sepsis. I have to thank the swift action of the emergency GP at my local surgery for getting me admitted directly as my temperature was over 40 degrees and I was barely conscious. I was given an emergency blood transfusion to make me strong enough for the ERCP and I was told by a doctor that my most recent CT scan had showed some significant changes but wouldn’t tell me what that was. I had the ERCP on the 17 March and the stent was fitted and a full biopsy done (not by my original consultant, interestingly – his colleague was the complete opposite, absolutely wonderful). The following Wednesday (22 March) I was told I had a large adenocarcinoma in the head of my pancreas and that yes, I had cancer.
There was no evidence of spread and it was possible I was suitable for surgery. I was discharged two days later and told to eat what liked (hurray)! No more pancreatitis diet! The nurses at the RBH couldn’t believe how strict I’d been with myself – it turns out I was actually malnourished but that was also because the cancer was interfering with my nutrient uptake. I had an appointment at the Churchill cancer hospital in Oxford where I was told my tumour was borderline operable as it was estimated to be 5cm (turned out to be 7cm!) – the doctor there seemed bemused that the consultant at the RBH hadn’t picked it up earlier but as we know, pancreatic cancer is not easy to detect and I’d shown no sign of cancer until the jaundice. I’d had several cancer marker tests which were negative. I was taken through the risks of the procedure (Whipples PPPD – they saved my stomach) but I once I knew I was suitable for surgery, I went for it!
My age and general good health were big factors and I was encouraged to spend the two weeks before surgery eating as much as I could in order to put on some weight to see me through the procedure. So it wasn’t all bad! I also signed up for three trials – one trying two different joins for the pancreas to the intestine (PANasta), a study on the effects of anaesthesia and the 100,000 genome project looking at DNA analysis for future treatments. I had my surgery on 13 April this year and it went very well – I was only in theatre for five hours and made a swift recovery. All my drains and tubes were removed after three days and I was discharged after five.
My surgical team all came down to discharge me full of smiles and said everything couldn’t have gone better. It was a nail-biting two weeks waiting for the follow-up which would tell me my results but again it was great news. Although my tumour was large and a T3 (had started to break out of the pancreas), all the tissue around it was normal, none of the 35 removed lymph nodes had any cancer and there was no metastasis. Official grading was adenocarcinoma of common bile duct pT3N0(0/35)M0L0V0R0.
So I have been lucky. I am now waiting to have adjuvant chemotherapy as an insurance – my oncology appointment is on 12 June to discuss my options. The chemo is voluntary but I’m going to do it – there is no guarantee that the cancer won’t come back even if I do have the chemo but I would kick myself if it did and I hadn’t had the treatment. My prognosis at the moment is as good as it can be and for the first time in over a year, I actually feel well (discounting surgery healing). I suppose the upshot of all this is, even though I have had a good result, it just goes to show how hard it is to detect pancreatic cancer. And the surgery is huge and takes a long time to recover from.
On days when I feel sore or tired, I look at my scar and think how lucky I was to be able to have the surgery that has probably saved my life. Just being suitable for the surgery has put me into the sadly tiny survivable bracket. We need to be able to detect this cancer earlier and more research and funding towards this is urgently needed. I want more people to have the chance I have had. So there is my cancer story, of course, it’s still ongoing but I’ll keep you updated on my progress in future. I plan to be one of the 5% that lives longer than five years and I hope that percentage gets bigger sooner rather than later.
It was July 2009. We had just come back from a wonderful holiday in Aruba in the Caribbean. I then lost my brother aged 56 following a two year battle with kidney cancer. At his funeral I kept scratching all over my body and we all thought it was stress related. I was fit at a good weight, and a non-smoker, and was then 66. I went to my GP who prescribed some emollient cream but after another few days it was no better I woke up in the middle of the night and was alarmed at the colour of my stools and urine. I went on the computer and tapped in these two symptoms and was horrified to come up with pancreatic cancer.
At this time I had no pains or discomfort so other than these two symptoms and I considered myself healthy. We visited the GP the following morning and saw a locum as the first appointment of the day. We repeated to her much as above including what symptoms and outcome we had seen on the computer and she referred to books from the shelf in the consulting room. And she told us to go home and she would telephone a colleague at the local hospital and she would ‘phone us back after her surgery. She telephoned me very quickly, within the hour and told me to go to A&E. We went straight to A&E We repeated the story to them. The hospital took a blood and toilet test. They asked whether we had recently been abroad and whether we had been anywhere tropical. The doctor thought I was a little yellow – we thought I was tanned from my holiday.
I was admitted as an in-patient. A couple of days later I had an ultrasound scan and then an endoscopy and a CT scan. A couple of days later we were informed that the CT scan was clear but the endoscopy had found a blockage on the bile duct which was possibly a cancer of the ampulla (see diagram for location of the Ampulla of Vater). While doing the endoscopy the hospital had put in a stent to relieve the jaundice. My yellowing faded away and the itching decreased. We then saw the hospital consultant who told us there was an operation that could cure the problem, a Whipple’s. Broomfield Hospital did not perform this but they were in touch with the Royal Free and arranged for me to see Mr Fusai.
We quickly had the appointment at the Royal Free and when we attended I was admitted and Mr Fusai arranged for another endoscopy and CT scan. The outcome was that he advised me that I was a suitable candidate for the Whipple’s and that I should have it as soon as possible. I went home and was re-admitted for the operation a few days later. I had the Whipple’s operation on 17th September. The operation is a major undertaking which takes many hours in theatre. The immediate recovery period has to have much pain control and is uncomfortable and seemingly never ending. The operation was a success and I feel very lucky to have been able top have it as most sufferers are diagnosed too late. They had found a very small tumour on the ampulla. Mr Fusai suggested that I might need course of chemotherapy. In the event, when I attended Broomfield, I was told that in their opinion because of the size of the tumour (and the fact that the lymph nodes were clear) there was no reason for me to have any chemotherapy.
Once I had been diagnosed my local hospital staff at Broomfield and at The Royal Free treated me sensitively and speedily. I have nothing but praise for the HNS treatment I received. Then, as now, I have trouble digesting my food. But with Creon (a pancreatic enzyme) I am mostly coping with the situation. I live my life as close a possible to normal and experience ‘toilet emergencies’ while we are out from time to time: I have many very understanding friends who support me when things are difficult in this regard – we walk regularly and holiday, including abroad, frequently. I remain fit and at a weight barely half a stone less than when I had the operation.
For 30 months or so I had regular check-ups with CT scans every six to eight months and blood tests, and was seen by the Broomfield oncologists during that period. I saw a Nutritionist who concluded that there was nothing she could suggest to improve my dietary habits. In the summer of 2012 my blood marker 19.9 tests suddenly increased without any identifiable reason. I remained healthy within myself and I had no other symptoms. The check-up period was changed to 10 weeks and the blood results continued to worsen. The CT scans however remained clear. The blood results reached a peak of 292 in the first half of 2013. And then, again without any changes in what I was doing, started to come down. They currently stand at 96.
I will be having a scan on 6th January which will be followed by a blood test and a visit to the oncologist towards the end of the month. So far as I can see and feel, I remain healthy and we look forward to this coming September as this will mark five years since the operation.
Ceridwen tells the story, in her own words, of her experience with pancreatic cancer.