Dane, Diagnosed with pancreatic cancer in 2011 age 49
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 I 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.
Dane, September 2012