Updated May 2019
Jean was diagnosed with inoperable pancreatic cancer in 2013 after complaining of extreme backache
In June 2013 I went to see my doctor with extreme backache in my lower back left side. The tablets I had been taking for acid reflux for about 6 months were no longer working and I had lost a lot of weight due to no appetite and feeling full after a mouthful of food. I also had pain on eating and excessive indigestion.
I had an endoscopy ten days later but this showed only mild oesophagitis so a CT scan was arranged due to the back ache. Two weeks later I had the CT scan with contrast which showed a mass in my pancreas. A second endoscopy with fine needle aspiration was booked, but for some reason which has never been fully understood the needle would not go into the pancreas so no tissue could be collected.
A PET scan was then arranged in early August and the results showed no metastatic disease but that I had inoperable pancreatic cancer. Telling my two sons and daughter in laws the news was painful beyond words. I started planning for the worst, getting my affairs in order, making a will and telling my friends the news. Strangely once this was done I felt easier and started concentrating on the fight ahead.
Palliative chemotherapy and radiotherapy were the best options and I had a consultation chemo/radiotherapy after the initial chemotherapy. After further blood tests I was fitted with a Hickman line to make the drugs and blood tests easier to administer and started chemotherapy on 10th October 2013.
The first cycle went well but I suffered nausea and vomiting and lost 5kg in a week. The second cycle was two weeks later but I experienced 3 Laryngeal spasms and a rash during treatment so the Irinotecan was stopped and hydro cortisone and Chlorpheniramine administered. The rash went after a couple of hours and I soon recovered from the spasms, although it was very frightening at the time, peripheral neuropathy remained a problem throughout my treatment.
The third cycle was delayed by a week due to neutropenia (low white blood cells) and extreme fatigue. G-CSF injections (to strengthen my immune system) were given daily for one week after each cycle from then on. These were not painful in themselves but I suffered back pain and spasms after them.
I had a break from chemotherapy over Christmas and a CT scan was arranged for New Year’s Eve. At this stage I was unsure if I should go on with the treatment as I was very down and still losing weight. I spoke to a nurse in the psycho-oncology service and decided to stop treatment and go for quality of life if the cancer had spread or there was no significant reduction in the size of the tumour.
The CT scan showed the best possible news, the tumour had shrunk by 6mm so I continued with the chemotherapy with fewer side effects as the drugs were administered more slowly. Apart from fatigue I felt better and tolerated the treatment well. A CT scan in March showed further reduction in size but it was still around the coeliac axis. I started 30 chemo/radiotherapy treatments at Easter 2014 which consisted of taking chemotherapy tablets on the treatment days to increase the effectiveness of the radiotherapy. A CT scan in May 2014 showed a further reduction on the tumour which had shrunk from the initial 23mm to 12mm.
I now have blood tests every three months to check for diabetes and have full blood count before seeing my oncologist every six months. A CT scan is done every 2 years although I know I can ring my Upper GI nurse if I have any worries.
Since my treatment finished I have slowly got back to a near normal life. I love spending time with my three grandchildren and take a couple of UK breaks each year. I see my friends as often as possible and love walking and reading. My time is taken up with raising awareness for pancreatic cancer and I have done fund raising and awareness stands in my area. I don't think about my diagnosis too much, as long as I am well I will carry on raising awareness and enjoying the time I have left.
Update May 2019
5 years since my treatment finished.
After my treatment finished in May 2014 I have been well. I had half yearly check ups, full bloods done and a scan every 2 years.
In December last year I started getting acid reflux again and a pain on my left side. The bloods came back ok; infact my CA19-9 markers were the lowest they'd ever been! My oncologist arranged a CT scan which came back as no change. It was a big relief of course.
I have changed my diet a little having lactose free milk and gluten free bread. These changes have helped a lot and the acid reflux has settled down.
As it's 5 years since treatment finished I've been released from hospital care, but know that if I'm worried or get any more symptoms I will be referred straight back.
When I'm not enjoying my grandchildren I put my energy into awareness and fundraising. I've dusted off my sewing machine and am making lots of things to sell for pancreatic cancer. I also make soft toys and have started making mosaic table mats, coasters and candle arrangements.
There's no time left to remember that I'm still terminally ill. I know I was very lucky in responding well to treatment and hope all the work Pancreatic Cancer UK do will find a tool for early diagnosis and kinder treatment.