John

John updated his story in August 2017.

I had radiation induced pancreatitis in 1977 after radiotherapy for testicular teratoma.

Further routine follow up blood tests in May 2012 showed a mild abnormality of liver function. A few weeks later I became symptomatic with an obstructive jaundice. The so called ‘itching’ was by far the worst symptom and was unresponsive to treatment. Investigations showed a smallish tumour on the head of my pancreas which the surgeons felt was operable.

I chose to go to London and have the surgery there as my three grown up children live and work there and they could visit me more easily. I got out of hospital 9 days post operatively and spent a further two weeks in London convalescing. The surgery and post-op care was good and made much easier by a retained T3 epidural which resolved most of the pain issues.

Diabetes and chemotherapy

During the pre-op period my diabetes became very unstable and symptomatic requiring insulin for a spell. I am now only on oral gliclazide.

I am under the oncologists and in the middle of a course of oral capecitabine chemotherapy. I requested to go in a trial but was not suitable because of my previous cancer history. I have considerable fat malabsorption and take about 10-12 Creon a day.

I also carry the BRCA 2 gene which gives me a higher risk for pancreatic cancer!

Update June 2014

Fundraising for pancreatic cancer

I am pretty well and, so far, recurrence free. Locally (in Leeds) we are making efforts to get a support group going and I have made contacts with local Primary Care to promote the message of early diagnosis. Last year I combined it with fundraising for Pancreatic Cancer UK and I am doing this season with Pancreatic Cancer Action who have an educational module aimed at GPs. I hope to take this further afield to other Primary Care organisations.

Update July 2015

Helping others with pancreatic cancer

I remain well three years post operation, with only mild bowel issues to contend with. My diabetes has remained mild and I only require tablets. My vitamin D levels stayed stubbornly low so I now have to take a 10000iu tablet to compensate. My GP and the practice nurse are excellent at looking after me and I do not attend any hospital clinics.

My children continue to fundraise for Pancreatic Cancer UK which makes me very proud.

Myself and another survivor have helped set up a support group based around Leeds. I am attending a Macmillan course on cancer support which is certainly thought provoking and requires much self-examination. I also sit on the Pancreatic Cancer UK Scientific Advisory Board as a lay member, helping to decide which scientific projects are awarded with the charity’s funds. I am much assisted by the experts who help explain some of the complex science and genetics involved.

I have become involved in having a voice in the future direction of cancer health services in the Leeds area and have also attended local GP educational meetings raising the profile of the benefits of early diagnosis of pancreatic cancer.

I am so grateful and lucky to have survived so long with this disease.

You can find a list of support groups here.

Update August 2017

Still doing all I can to help

I remain fit and well, working part time and I’m currently in training for the Pancreatic Cancer UK organised Trek Together Grand Canyon Challenge in October. My 70th birthday is in November, so I’m sure we’ll have a bit of a party when I return (probably exhausted) from the trek.