My surgeon decided that as my scan films were 5 years old we should get new ones, these were done on Friday 13th Dec. The following Monday my surgeon rang me at work and told me there was a 16mm shadow on the head/neck of my pancreas and I was to have a CT scan the following day. From then on my life changed. The word cancer was not used as yet but a cloud descended on my family. We had to wait over the Christmas break to get an appointment as I was transferred to the care of Professor Bagshaw, the pancreas man here in Christchurch, and he only worked through the public hospital system. I gathered my family around me on Christmas Day, everyone was upset and this was a nerve wracking time.
What followed was 3 months of MRI's, CT's etc. and appointments with Prof. Bagshaw, he worked closely with the team from Liverpool University and my results were sent to England to be appraised then discussed. Initially it was thought that I had an Islet cell tumour. We were given all the statistics for survival, both of the operation itself and of actually surviving PC. I don't think I took in how serious this was until I found the JH board. Eventually I was given a surgery date of 7th March but this was put back a week as one of the team from Liverpool had not seen my latest test results. I was also told I was to have a biopsy done but during pre-op I was told the operating theatre had been reserved for the whole day and a bed booked for me for 3 weeks so we knew my surgeon was covering the options. I was admitted to hospital on 13th. March 2003 I was seen by the anaesthetist etc. and told I was definitely to have the whipple.
The following morning at 8am I was being prepared by having an epidural inserted, it took 5 attempts to get it right. I don't remember anything then until I opened my eyes in the ICU. I had a classic whipple losing the head and neck of my pancreas, duodenum, gallbladder and almost half of my stomach, the portal vein had been scraped, nicked several times, and repaired. My whipple took between 7 and 8 hours. The pathology report stated that I had an adenocarcinoma tumour, moderately differentiated, 18x20x22mm, clear surgical margins and lymph nodes taken were clear.
I then had 7 weeks in hospital, 5 of those weeks were spent on TPN as my stomach was not working properly and I would vomit if as much as a sip of water passed my lips. Food and drink tasted vile anyway and I lost 16 kilograms in weight. I had a leak from the drain in my pancreas and it 'melted' the end of my surgical scar, I also had a leak inside from the pancreas drain and this caused pockets of fluid to be in my abdomen. I was told if these did not dissipate on their own I could have cysts develop. When this leak occurred the pain was indescribable, luckily for me my surgeon was in the ward at the time and he rushed to my aid ordering morphine and oxygen, this leak also caused me to have repeated attacks of high temperature. I was put on antibiotics.
During my hospital stay I had morphine for pain and three types of nausea medication. I had the ng tube replaced twice and spent most of my stay with this in place to rid my stomach of the accumulation of bile. One of the nice things was that Mr. Coulter still showed an interest in me and came to my bedside to ask how I was feeling and told me he had been in the operating theatre for part of my whipple. Also I could not have asked for a nicer person to have done my surgery than Prof. Bagshaw, he is a lovely man and was always kind and considerate. I also had my favourite nurses and my thanks to the nursing staff of ward 17 included a large gift box filled with chocolates and a thank you card
Eventually I started to eat, mashed potato and gravy, sloppy beef mince (ground beef) stew and mashed potatoes, I sipped on soup and I found I could sip ginger ale. I was allowed home for two short visits then for a weekend and I refused to go back insisting I would eat better if I was at home and could make my own food, which I did. There were tears at times, it seems funny now that I sat and cried because Garry and my daughter were eating a roast dinner and I was having 'slop'. I had nausea and vomited at times and carried a pottle with me wherever I went. 3 months after my whipple I started to eat more normally. Around this time my hair started to fall out and became very thin and out of condition. I had it cut short.
My surgeon wanted me on the Espac 3 trial, a trial based in Liverpool England and covering Europe, Australia and New Zealand, I had to be well for this and just scraped in, I did sign up and initially was chosen for the observation arm, 3 monthly oncology visits for 5 years. When this arm was dropped overseas as they found the people on this arm ‘did not do as well’ I found I had signed up two weeks too early to be just crossed over to chemo and I re-signed for observation. My surgeon sent me to oncology to tell them I wanted to have chemo and I was lucky enough to have my request granted. As my surgery had been performed at Christchurch Public Hospital I was not charged for this or for my chemo. I did 6 months on Gemcitabine (Gemzar) One treatment a week for 3 weeks, then one week off. After two weeks of atrocious headaches I posted on the JH board and was told to ask for more hydration which I did, I had saline piggy backed in with the chemo and from then on nausea and fatigue with just slight headaches were normal. Chemo was delayed 2 or 3 times and once cancelled completely.
My last CT scan done on November 16th. 2004 was clear for my abdomen but as the scan had caught the bottom of my lungs a nodule was seen which was followed up by a full lung CT scan in Jan. 2005 but this proved to be okay too. I continue to be classed as in remission, my CA19-9 varies but has not been over 14, (as this test was not done before surgery I have nothing to compare this to.) I found the whipple recovery very difficult, and still have problems such as dumping syndrome, and pain to the extent that I am now on an invalid benefit, but I would go through all this again as I consider this to be the cure for pancreatic cancer at this time. I was so lucky that my guardian angel sent me to my doctor so my pc could be found early and gave me this chance at life. I thank God every day that I am still here with my beloved husband Garry, 6 children and 6 grandchildren, and my Dad (Mum died July 2005) and two sisters in Perth, Western Australia, I love every one of them dearly.
We need to find a cure for this cancer and bring to the doctors an awareness of the early symptoms, obviously not all my problems were caused by gallbladder attacks. I also had itching around my neck, body and eyes, and reflux. I had one attack of reflux just a couple of weeks before my scan in Dec. '02, it was so bad I thought I was having a heart attack. I realise now that these were signs of pc in my body but even mentioning them to my doctor did not alert her to what was causing them.
Thank you for reading my story.