Primary Sclerosing Cholangitis was something I had never heard about until about 5 years ago, but first let me give you a little bit about my background.
My name is Michael Hunter, I was born in 1954 and at the age of 11 I started to get symptoms that I now know were from a condition called Ulcerative Colitis. Back then it wasn’t very well known, but I was fortunate enough to be there when some pioneering treatments were used. I dealt with UC for quite a few years until in 1991 I was called in after a colonoscopy to be told that I had suspicious cells in my colon, a couple of weeks later I had a total colectomy and a jpouch, I think I was the twenty third person to have a jpouch in the UK.
All went well with my jpouch, apart from the occasional flare up, until about 5 years ago when I had severe abdominal pains, eventually, after several short stays in hospital I was diagnosed with a condition I had never heard of called PSC. Sure I looked it up on Google scared myself shitless!?😃😃 luckily I found the website for PSC support and found sensible information and great support from their Facebook group. Yet again, I dealt with it and didn’t really have symptoms, other than fatigue and the odd infection, until last year when I started getting lots of URQ pain, strictures forming quickly, stents in and out.
PSC sufferers all live with that sword of Damocles hanging over them, will I get cancer or not? That is where I was a few short months ago, it seems like a lifetime now!
I have started this blog so that maybe anyone that gets into the same position as me can see how I have managed to deal with it, it is still early days. Staying positive can and does work very well with coping with it.
Anyway, back at the beginning of 2015, I started getting URQ pains, I could deal with them but as time went on I had to start taking regular paracetamol, the pains seemed to coincide with bouts of cholangitis, so I didn’t worry too much as I just started ciprofloxacin and within a couple of days all felt better again. However, the pains continued, not always with cholangitis, I had stents fitted and taken out, but it was in August/September 2015 that I started to get a bit concerned.
I had cholangitis, cipro didn’t appear to be working and I was admitted to UCLH. I had an ERCP booked anyway, but they took me in a couple of days early to keep an eye on me. After the ERCP Dr Chapman came to see me to let me know how it had gone. He had trouble getting into the bile duct because of the stricture but when he did he found lots of pus there, so the cipro hadn’t been working. He had dilated the structure and put in a metal covered stent so that it would help the drainage, he was also concerned that it may be the start of cholangiocarcinoma, now I was getting worried!
After this ERCP I got pancreatitis, but luckily they had kept me in and fluids and regular doses of morphine worked wonders!! 😃😃 when the histology results were back I had a telephone consultation and to my relief was told that the brushings were fine. I still had more pain than I had before and was now using Tramadol and Oramorph to back up the paracetamol.
Just before Christmas 2015, I had a telephone consultation about the pain and it was decided that perhaps the metal stent was causing it, so it was arranged that I go in on January 4th 2016 to have it removed. I didn’t quite get that far as on January 2nd 2016 I had to go to A&E in Dorchester hospital with severe pains, again morphine helped it settle enough for me to go home and then have my ERCP on the 4th. The stent was taken out and brushings taken again for histology. I came home the same day but didn’t feel right, just a feeling. After about a week I had really severe URQ pains one evening, the following morning my urine was dark orange, help, a blockage, bloods were taken and results sent to UCLH, sure enough it showed that it possibly was a blockage. A couple of days later, the colour of my wee lightened and the consultant Dr Johnson put it down to possible sludge clearing through the stent and causing a partial blockage. This happened again a couple more times and so it was decided I would go in for an ERCP to have another stent fitted on February 5th 2016.
After this ERCP things were painful, I had only been given a sedative rather than propofol and Dr Johnson had fitted two stents a plastic one inside a metal covered one to try to keep the bile flowing. I knew it would be more painful, but by the time I got home I was quite uncomfortable, I had thrown up on the train on the way back but put that down to the amount of opiate pain killers I had taken. The 5th was a Friday, by Sunday evening I had a high temp and severe URQ pains and was taken to Yeovil hospital by ambulance after getting advice from Dr Johnson that I needed urgent IV antibiotics.
Bad move going to Yeovil, it took over 4 hours before I received the antibiotics, so I discharged myself the following morning and I admitted myself to UCLH on the following Wednesday evening. Overnight I had bloods taken to see if I needed more IV antibiotics but all was well, and I felt good, pains had subsided and I was ready to go home. The consultant wanted me to have a CT scan before I went home to see if the stents could have caused the problem
This is where things started to go into a blur! On the Thursday I was told that Dr Chapman would see me in the morning, by late morning I hadn’t seen anyone, then his registrar came round and had a chat and said that Dr Chapman would see me in the afternoon, my specialist nurse had texted twice to see if anyone had been round, by no alarm bells started ringing. When Dr Chapman came to see me he sat down and asked how the pains were, he then dropped the bombshell. He said that the results of the brushings had come back on the Wednesday and they had been looked at by 4 pathologists and they all agreed they showed high grade dysplasia, that is they were almost certainly cancer!! He said that they wanted to do a whipples procedure, but first I needed a CT scan to make sure there were no signs of anything anywhere else. He explained that I would not be eligible for liver transplant in the future and went on and talked me through the operation.
As you can imagine I was numb, my friend Teresa had been with me that day, but had gone for a walk while I spoke to Dr Chapman. At that point I just wanted to get out, Dr Chapman had said I could go home as soon as I had my scan on the Friday but I needed out now. I called Teresa and we met outside the hospital, I told her what I had just been told, it felt as though I was talking about someone else, I struggled to hold back the tears while I was telling her. We talked through it, after all I had beaten colon cancer some 24 years ago, why should this be any different, all they were going to do was cut out the cancerous parts and a bit more to make sure, so in the end I felt quite upbeat about it. I was so glad Teresa was there that day, to support me and help me talk through everything.
Dr Chapman’s registrar came round the following morning to answer all my questions, she had as much time as I needed to answer them. It was agreed that she would call me when she had the results of the CT. this ended up being the following Tuesday evening after the MDT meeting. Bombshell number two! The scan showed that I had three lesions in my liver and they needed to do a liver biopsy. I never really wanted one of those but if I had to …………. This was arranged quite quickly, I went in initially for the day but as it was a targeted biopsy I was kept in overnight in case of bleeding. I left bright and early the following morning, a Friday morning. The wait for the results was agonising, I knew I would have to wait until after the MDT meeting the following Tuesday. I often felt it was all a bad dream or that I was making it up, it just didn’t seem real! I can’t have cancer, I feel ok.
After the meeting, my specialist nurse told me that I needed to see an oncologist, they couldn’t tell me anything more on the phone but it was obvious they were malignant. I had an appointment for Tuesday 8th March 2016, things were going so quickly now, but I just wanted to know.
My daughters, Sam and Laura, came to the appointment with me all ready to take notes so that I could go over things afterwards. I was told that the tumour was inoperable, therefore not curable, but it could be treated with chemotherapy. It had spread from the bile duct to the liver. It all felt so surreal, was this really about me?! Dr Shiu went through the treatments with us and gave plenty of information on the drugs.
I asked the million dollar question, what is the prognosis? It said it was difficult to say but untreated I would have 3-6 months, the norm was 11-16 months and at best I could make 5 years! WOW that wasn’t expected, but cholangiocarcinoma is a very aggressive cancer, in Dr Shiu’s words it is a very serious illness! The thought that if I didn’t have chemo I could be dead in 6 months just didn’t add up, I felt good, better than I had done in a while!
Sam and Laura are a great support to me, it is nice that we can talk openly about this rather that it being the elephant in the room! They will keep me positive as I hope I will keep them positive. Who knows what treatments are just around the corner.
This is pretty much where I am now, I will hopefully be keeping this blog up to date as often as possible with how things are going and how I feel. I hope in some small way it may help others who get the same diagnosis.
I am looking at all possibilities and I am currently thinking about trying canabis oil, there is no evidence that it helps but quite a few instances where people appear to have had success in pain relief and in some cases reducing the tumours.