Nigel

Like a lot of stories I have read about pancreatic cancer my diagnoses came completely as a shock and completely out of the blue.

Previous to my diagnosis I was a fit and relatively healthy 49 year old long distance runner, and had no symptoms or indication that there was anything seriously wrong with me. I took up ultra-running a couple of years ago. In January this year I was well into training for my first 100 mile race in May. As part of the build up to this I competed in the Country to Capital 45 mile race on 17th January 2015, and had one of the best races I’ve done so far. I got straight back into training the week after. But then on the Wednesday evening I got a slight stomach ache. I didn’t think much of it, and it had gone on Thursday morning. Then after training with my running club on Thursday evening, the stomach ache came back, got worse, and was still there when I woke up on Friday morning, and I noticed that I had dark urine. I had a phone appointment with a GP that day, and explained the history and symptoms. The doctor said that it sounded like it was just a viral stomach bug and made me an appointment for the following Wednesday, but it would probably clear up in a few days and to cancel the appointment if it did.

I still had the stomach ache on Wednesday and I had lost my appetite. I thought when I was getting ready to go to the doctor’s that I was looking a bit yellow but put it down to the light! The GP examined my stomach and also looked at the urine sample, and came to the conclusion that I may have gall stones. So he sent me up to the hospital to get a blood test, and said he would book me in to get an ultrasound scan to investigate. In the meantime he said to just take painkillers, and if the symptoms got worse or I developed a fever to go to A&E. The blood test results were mainly ok but that the liver function test was showing a high bilirubin count, so they would book me in for an urgent Ultrasound.

Over the weekend I noticed that I was getting noticeably jaundiced and that I had lost an alarming amount of weight, so I took myself down to A&E on the Sunday evening. They took another blood test and I was examined by one of the junior doctors who said that my bilirubin count had doubled since the last test, and concluded that I had obstructive jaundice – probably caused by gall stones. One of the house doctors came to the same conclusion. While I was waiting for them to say that it was ok to go home, the house doctor came back and said that he had had a word with his consultant – there had been a change of plan and they were admitting me. I spoke to the consultant and he said that it sounded like gallstones but there were two or three other things it could be. When I asked what, he got a bit cagey and said let’s not go there and stick with gallstones for the moment, which rang a few alarm bells!

First thing Monday morning I was sent down for a CT scan. In the evening, a posse of doctors and nurses came to my bed, shut the curtains and the consultant said that it was not gallstones and there was no easy way to say it but the blockage in my bile duct was probably cancer! As you can imagine this came as a big shock. They were not mincing their words, and said that I had a large tumour, and that it was probably pancreatic cancer but there was a slim chance that it may be benign. After it had sunk in I got very emotional, accompanied by a lot of expletives and apologies for my language! The consultant said that they were just as shocked by the results as I was. He explained that they would be sending me over to St. George’s hospital to have an ERCP to insert a stent in my bile duct, to relive the jaundice and take biopsies. He also said that if it did turn out to be cancerous, that as I was relatively young and very fit that they would throw everything they had at it.

My next thought was how my mum was going to take it! My elder sister had only just got over having breast cancer! I decided to be completely open about it, try and be as normal as possible and fight it, But I didn’t want my mum knowing until I was ready to tell her, and I asked if I could get some advice from a cancer nurse about doing this. Early the following morning I went over to St. Georges and had the ERCP. They said that the procedure had been difficult but successful, and that they would keep me in for observation in case of infection, and to monitor the jaundice, which should clear in a few days. The next few days with my mum visiting were a bit awkward, trying to find the right moment to let her know. It was when a couple of Macmillan cancer nurses arrived, that I took the opportunity to tell hwe while the nurses were there for support. My mum was obviously upset but took it fairly well, and I was glad I had the nurses there to explain things. It was good to finally be open about it.

By the end of the week the jaundice still hadn’t gone but the bilirubin count was falling, so I was discharged. I continued to have uncomfortable and very disturbed nights with stomach pains, and having to go to the toilet. And the jaundice was still stubbornly refusing to go away. In this time I had my first consultation with the oncology consultant and got the confirmation that it was indeed locally advanced pancreatic cancer. She went through the treatment plan, which would start with six rounds of chemotherapy with FOLFIRINOX then radiotherapy, followed by another six FOLFIRINOX. I would have to wait until the jaundice had gone before I could start, so I continued to have blood tests to monitor this. My bilirubin levels were still high, but were on a downward trend so they would continue to monitor it.

During this time I started to go back to work on an informal basis. Work were very good and said I could just come in and do whatever I was comfortable with, so I started doing half days to try and get back into it. This was good as I really wanted to get back to as normal a life as possible. I had told a few close friends and family that I had been diagnosed with cancer, and I decided to make a public announcement on Facebook about it, and got loads of messages of support which was great. I have continued to give regular updates, which has helped me come to terms with things and manage the illness and its consequences.

A couple of weeks later I started to feel very ill again, which culminated in having a very uncomfortable night with pains in my abdomen. I woke up with a stitch-like pain in my right side. I thought it might have been caused by a bit of a strain as I had been a bit constipated the night before, so I got up to go into work. But on the way to the bus stop, the pain got worse so I abandoned trying to get into work, and went round to my GP. All the doctors were booked so the receptionist said that a doctor would phone me later. I managed to stagger back home in extreme discomfort. When I got there I collapsed back into bed and waited for the doctor to call, which he did and said that I had better come in. I went to get up and immediately doubled over with pain that was so bad I could hardly move. My mum called an ambulance and I was taken back to A&E where I was examined, given morphine, put straight on a course of intravenous antibiotics, and admitted again with a gallbladder infection. An ultra sound scan couldn’t see everything so they sent me for another ERCP to see if everything was ok with the stent. I eventually had the ERCP a couple of days later and this showed no problems at all. By this time another week had passed, I was feeling much better, and best of all the jaundice had finally started to subside as my bilirubin count was getting back to normal. When I came out of hospital, I realised how ill I had been as I felt very weak and wobbly for a few days.

At the end of March I got appointments to have a PICC line inserted and start my chemotherapy. The day after I had the PICC line inserted, I had a call from one of the chemo doctors saying that my blood tests were showing I had a very high blood glucose level, which needed to be under control before I started chemo. My GP referred me to the diabetes clinic where I was diagnosed with type 1 diabetes and put on insulin! I started chemo the following week and all went well initially. I even started to go back to work more or less full time and started to get back into running again. Ironically it wasn’t the cancer that was preventing me from getting back into running but the diabetes and how that would affect my training.

I have just finished my 12th round of chemo and have another scan later this week. I should get the results next week and find out where we go next with the treatment, probably a course of radiotherapy. I have to say that I have had no problems at all with the care I have received from all the medical and other staff that have been involved with my care. From when I first got ill to the present, they have all been very professional, informative, caring and good humoured throughout, which has made an unpleasant and unsettling experience much more bearable.

Throughout the chemo treatment I have managed to stay very positive, although there have been moments where I have got depressed or angry at my situation. I have been determined to try and do things as normally as possible. Going into work and getting back into running has helped a lot. I decided around the time I started my seventh chemo to bite the bullet and enter next year’s Brighton Marathon, running for Pancreatic Cancer UK. This has spurred me on to continue with my training, and I am getting more confident about running with the diabetes. I am confident that as long as the treatment allows it, I will be more than ready to run the marathon next year and am already thinking about getting back into ultras again.

Nigel’s experience of FOLFIRINOX chemotherapy

To begin with, I had very little side effects from the chemo, just feeling a little tired and suffered a bit from peripheral neuropathy if I touched or drank anything cold, which I thought wasn’t too bad. But from about the third round I started to have problems with my PICC line. This culminated in having to have it taken out and another one inserted into the other arm. I also had my chemo delayed a couple of times because my white blood cell count was low so I was put on filgrastin injections, which I have been administering myself. It’s funny to think that before all this started I could just about cope with someone else giving me an injection, and now I think nothing of injecting myself up to 5 times a day with insulin (for diabetes which I had just been diagnosed with) or filgrastin!

After my sixth chemo round I had another scan and got the good news that the tumour had shrunk slightly, and the tumour markers in my blood tests were dropping.

At this time I thought that I would be going on to have a course of radiotherapy but they decided to go straight on with the next six rounds of chemo, which I dreaded as the side effects were getting worse. At one point I got a severe bout of sickness and diarrhoea which meant I had to go back into the hospital to get put on a drip to get re-hydrated. I have also been suffering from sickness for a few days after each chemo session. The peripheral neuropathy has become permanent so they have reduced my chemo doses and taken me off the Oxalyplatin. Despite this the tumour markers have still been dropping. I have just finished my 12th round of chemo and have another scan later this week.

September 2015

Update November 2015

I had another CT scan on 23rd October after my 12 rounds of chemo and was referred to another consultant for radiotherapy. The scan indicated that the tumour had not shown any significant shrinkage but the tumour markers in my blood tests had fallen from over 43,000 down to 92. They explained that, because of the size and complex nature of the tumour, surgery would never be an option as they would not be able to remove all of it and it would cause too much scar tissue, so they are going for radical radiotherapy with the aim of completely eradicating the tumour and achieving a complete cure. I had a PET CT scan which showed no sign that the cancer had spread so they are going ahead with a 6 week course of radiotherapy with Capecitabine oral chemotherapy which is due to start on 9th November.

On the running front, I have not managed to do much training recently but I did complete the Royal Borough of Kingston 10 mile race on 3rd October in just under 1hr 13min, which is slow by my usual standards but I was pleased with that. Then on 25th October I managed to complete the Worksop Halloween Half Marathon in a time of 1hr 39min which was my slowest ever half marathon but I was pleased to complete the course within my target time of 1hr 40 so, all things being well, I am still well on course to run Brighton Marathon for Pancreatic Cancer UK next year.

Update March 2016

I had my 6 weeks of radiotherapy at the end of last year, finishing just before Christmas. I found radiotherapy quite hard in that it didn’t make me ill like the chemo did, but the fact that it was every day was a bit warring and it also made me feel really tired. Despite this I did manage to cycle the 9 miles there and back every day, much to the amazement of all involved!

I had a follow up appointment in January and a follow up scan booked for March. I had the scan at the beginning of March and around the same time I started to experience a lot of abdominal discomfort. I have just had the follow up appointment from the scan and unfortunately it wasn’t good news. The tumour had not responded to the radiotherapy and had possibly got bigger. Also the tumour markers in my blood tests had gone up from a low of 68 to 1400. The consultant said that this, along with the abdominal discomfort problems I had been having, may indicate that the tumour may have spread outside of the pancreas. I left the hospital with several prescriptions to relieve the abdominal problems and I have been referred back to my original consultant for more chemotherapy and, although the cancer is not likely to be curable, it had responded well to chemo in the past so more chemo would keep it in check. They also said that as I am still strong and positive I could be one of those who beat the odds and go on a lot longer than expected.

On the running front, things initially didn’t quite go to plan; after the Worksop Half I got a bad cold for a week which put me out of running and then just as I was coming back I tripped over whilst out running and broke my big toe as well as bashing my head on the pavement! This put me out for another 3 weeks. When I did get back into it again, because of the effects of the radiotherapy and being tired after work, when I went back in the new year I ended up cramming training into weekends. Despite this and the abdominal problems I’d been having, on the 12th March, between my scan and the follow up appointment I managed to complete the Thames Meander Marathon in a time of 4hrs 26min, my slowest ever time for a marathon by a long way, but I was still very pleased to have finished and now know I can at least complete the distance without collapsing or having any major problems. I am still confident of completing the Brighton Marathon as part of the PCUK team next month (assuming I am well and can fit it in with my treatment plan) and am even more determined to raise as much money as possible.