Julie, age 60 when diagnosed with operable cholangiocarcinoma (bile duct cancer)

Julie's Story

Looking back I think I had symptoms for at least 18 months before I was diagnosed. I was very often sick with vomiting and diarrhoea, which was put down as stress at the time, by my doctor.

By March 2004 I really started to feel ill. I started with severe backache, plus I was extremely tired and quite depressed. In May 2004 I started to get very itchy and scratched like crazy. I then got a terrible rash all over my body, and would wake up to find my nightie and sheets full of blood where I had scratched myself during the night. On May 21st I went to see my GP, in Shrewsbury where I was living at the time. This young man saved my life, as he recognised that I was beginning to be jaundiced and also recognised the rash. Within an hour I was admitted to Shrewsbury hospital. I knew by this time that there was something wrong with my bile duct and that was what was causing the rash and jaundice. Never for one minute did I think this was cancer, it never entered my mind.

I had a stent put in, as my bile duct had ceased to work, and was told that my gall bladder was involved. One day I was walking down the ward behind 7 doctors who were discussing a patient who had cancer. To my horror I realised they were talking about me. I spoke to one of the doctors and asked what was going on, to which she replied " oh didn't anyone tell you that you have pancreatic and liver cancer?" I almost fainted with shock, and this lady doctor came back to my room and explained what was going on in my body. All I can say is that I felt I had been hit in the face with a plank. I truly thought I had gallstones.

After 3 weeks in Shrewsbury Hospital I was transferred by ambulance to the Stafford University Hospital where I had further tests and again was told I had pancreatic/liver cancer. It took 3 more weeks to stabilise me, as my bloods were very low, and on the day I was supposed to have the operation I went into renal failure and the surgeons couldn't operate. Finally I had a whipple procedure done on July 4th.

The Whipple procedure was a huge operation and I was told afterwards that I was in the operating theatre for 9 hours. I then spent 6 days in the intensive care unit. Most of that week is a blur and I can remember very little about it. I do remember the incredible pain, even though I was on morphine etc. After the six days I was sent back to the surgical ward. I must say that I was treated very well in this hospital, and received excellent care and everyone involved were very kind to me. I had tubes coming out of and going into my tummy, 2 bags for drainage, a catheter, an IV etc etc.

I was terrible sick and had awful diarrhoea, for two weeks following the surgery, I couldn't eat or drink without throwing up or having the runs. I was very frightened all during this time. I couldn't get any answers to my questions from the surgical team and also the oncology team. I did not know whether I was going to live or die. Finally I lost my cool and broke down and told the consultants that I wanted to know what was happening, what they had done during the surgery and I wanted all my questions answered NOW. After all, it was my body and I wanted to know everything.

I was told that my liver was clear of cancer, that the cancer had actually started in my bile duct, and had spread to my gall bladder, pancreas and duodenum, and also some lymph nodes. During the whipple procedure, the surgeons removed 1/3 of my pancreas (the wide end), my gall bladder, bile duct, and a large piece of my duodenum and the affected lymph nodes. I had been very lucky as the cancer was in stage 2B, and they said they had got it all. I finally left the hospital on July 28th.

When I finally got home a few shocks awaited me. My fiance and his son had done absolutely no housework and the flat was a mess. So the first thing I did was clean up and do laundry, feeling terrible and in a lot of pain. My personal life took a downhill slide and I knew I could not marry this man. I was still in a great deal of pain, had diarrhoea and vomited many times each day. I could not eat and lived on fortisips and cups of tea.

At the end of August I had to go back to Stafford to see the surgeon, and also the oncologist. I had volunteer drivers (bless their hearts) pick me up in Shrewsbury, then drive me the hour and a half journey to Stoke-On-Trent, wait for me, then drive me back. The kindness of these drivers was simply awesome. The Oncologist suggested chemotherapy, and put me on a Gemcitabine trial. I would go to Stoke every Tuesday for 3 weeks then would have a weeks rest then start all over again. (during this time I was steadily losing weight, and by Christmas had lost 6 stone). My personal life was unbearable and by the end of October I had had enough. I moved out on one of my weeks off, and moved back to Manchester to just round the corner from where I was born. I felt so ill during all this, and sometimes couldnt even get off the settee to make myself a cup of tea.

The move to Manchester was the best thing I have ever done for myself, although starting over again at 60, with nothing was very frightening. However, I managed, and over the last few months have got myself sorted and have a nice little home. Friends and family were very good to me during this time, and I would not have managed without them.

My medical records were transferred from Stafford to the Christie Hospital and I carried on with the chemotherapy routine. Christmas came and went and although I still had a lot of pain, sickness and diarrhoea, I did have a nice time. I cannot speak highly enough of the doctors, nurses and staff at the Christie. They are such a happy, caring group of people and their kindness at times made me cry. My bloods were really low and at one time a platelet infusion was discussed. I had several CT scans, and no cancer showed up. I really thought I was beating this illness.

At the end of January this year, I started to have very severe pains and one night I was in agony. The only relief I could get was to lay on my settee, with my tummy pressed over the arm. It so happened that my lovely Macmillan nurse came to see me the next day, and when she saw how bad I was she phoned the hospital and I was taken there that morning and admitted. I was very frightened as I was convinced the cancer was back. It was not cancer and was actually a huge blockage in my intestines caused through scar tissue. I then had another quite big operation and the surgeons removed a large piece of my intestines where the blockage was. I was in isolation due to my bloods being so low and also for the risk of infection due to me being on chemotherapy. I was in hospital 9 days, and in a great deal of pain and once again could not eat, and lost another 2 stone. ( I had now lost half my body weight since being diagnosed.) I continued with the chemotherapy during this time and still felt awful. My hair had thinned out very much, I couldnt colour it, and I looked and felt like an old sick woman. I finally finished chemotherapy at the end of February this year. Slowly but surely the pains lessened, and although I would still get diarrhoea I wasn't vomiting anymore.

I am feeling much better now and getting stronger every day. I have gained half a stone and although my energy level still isn't very good, and I feel very tired most days, I am thankful to be alive, and very grateful to the large group of medical personnel who have helped me so much. I go to a cancer wellness centre called the Neil Cliff Centre, and have had counceling, have seen the dietician, have also been having physiotherapy, and complimentary essential oils massages and reflexology.

The chemotherapy really affected my muscles and destroyed a lot of soft muscle tissue, and has made me walk with a slight stagger to my right, hence the physiotherapy. I had a brain scan last week, and get the results of that next Tuesday when I go to the Christie Hospital to see the oncologist. The brain scan is just an eliminating test in case I have had a small stroke.

I am starting to get my life back together, and have been invited onto the committee board of Cancer-Voices as their patient representative. I feel I want to give something back because I am one of the lucky ones whose cancer was found early. I know there is a good chance it could come back, but I stay positive. I still have cancer fatigue which is now being recognised by a lot of doctors, and I start a 6 week course, next month, at the Neil Cliff Centre for Living with Cancer Fatigue.

I went to the cancer hospital on Tuesday July 12th, and got all my results from the various tests I have had just lately. All my results were excellent and I was told that at this time I am totally cancer free. I could have danced for joy. I do have to have ct scans every 2 months and will still have regular check ups, and blood work, but I dont mind that at all................ I did the happy dance.............

Thank you for reading my story.............Julie

Update November 2005.

The oncologists now wonder whether the stagger is due to a slight stroke rather than the chemotherapy and are doing tests including an MRI scan. The original CT scan to test for stroke showed nothing untoward but the MRI scan allows different areas of the brain to be checked. The checks have moved back to once a month rather than 2 monthly while they investigate.

Update 14th February 2006.

Great check up at Christies this morning, everything is clear.

Update 23rd July 2007.

It is now 3 years since I had the whipple done. I was at the Christie Hospital last Tuesday and had a good check up. The Consultant felt that the pain and discomfort I get around the scar area is being caused through the medication called Celebrex (an anti-inflamatory medication which helps my back pain). So he has given me yet another tablet to take each day. I am also back on creon, and he said that I will probably have to take them for the rest of my life, as my pancreas (whats left of it) cannot make the enzymes which help digest my food. The Consultant said I have done marvellously well considering how ill I was this time 3 years ago. He said the cancer was pretty solid and had no trailing bits and that they were able to cut it all out. He said it was like a grapefruit in size and seeing as my liver and the main blood vessel were not affected i was very very lucky. The chemotherapy was just in case I had more lympth nodes affected. He said that I have NO cancer in me now. I was very relieved to hear that.

I now take:

1. 2 Codiene Phosphate twice a day (for bowel control because if I dont take them I have no control over my bowel).
2. 2 Amitriptyline twice a day for nerve ending damage.
3. Creon every time I eat. ( from 1 capsule to 5 depending on what I am eating).
4. 1 lansoprazole to be taken each day (for my tummy).
5. 1 celebrex twice a day (for back problems)
6. 1 Sertraline each day...( for depression and anxiety)

All in all, I feel quite well and have a lot to be thankful for. Sometimes it is very hard to believe just what I went through and how I have got better and have overcome all the side effects and problems caused through the whipple and also the chemotherapy............it all seems like a bad dream now. Cancer can be beaten and I do think a positive attitude really helps.

I wish you all good health. keep positive, and fight this evil illness..........Bye for now...Julie