Karen

Karen updated her story in March 2016 and October 2017.

I was diagnosed officially on 12th September 2010. I had been feeling off it for some time, feeling sick and then severe abdominal pains at night, which the GP said was indigestion. Then suddenly I started to turn yellow, skin and eyes and unbearable itching, so I was sent for blood tests which showed my bilirubin was extremely high and I went for a scan that same week.

This was followed by an MRI scan and 3 days later a stent insertion which eased the symptoms. Six weeks later after my pancreas had calmed down I visited my surgeon. He said there was a high possibility the blockage was a cancer in the pancreas, but as it had showed no abnormal cells in the brushings when the stent was inserted, so they could not be 100% sure.

He suggested a Whipple’s procedure which I was eligible for and given the choice of having it done the following week, or I could wait. But when I asked him he said if it was cancerous the latter choice may not be the best, so I went ahead on 20th September 2010, and yes it was cancerous. I was made aware of the risks but felt there was no other choice.

Taking part in a clinical trial

I was told it was nothing in my lifestyle that had caused it, I was a fit, healthy, non smoking and odd glass of wine woman. After eight days in high dependency, and four weeks in hospital I came home. Six weeks later I was asked to partake in the Bilcap clinical trial and I began as one half of patients who partake in chemotherapy and monitoring, but on the 12th day of the first cycle it had to be stopped as it was causing the arteries to my heart to constrict so now I just get routine scans and appointments with my surgeon.

Finding support and a bit of advice

It was four months before I felt anything like normal, and it was extremely hard. The more I looked at articles online the worse I became, so my husband suggested I stopped reading them. Although the hospital were fantastic with my care up to and during my treatment, I felt support from local organisations lacking somewhat due to their lack of knowledge, as actually there are very few Whipple’s patients around.

I still feel that is the case, although the new material available through Pancreatic Cancer UK is excellent and wish I had seen that in the early days. I met some ladies with other cancers at Macmillan, but otherwise felt somewhat abandoned as there were no support groups. I felt the help I got from our local hospice was good, as the complementary therapies were excellent and helped me relax.

When you are recovering, which will take a long time, eat what you want when you want. Rich tea biscuits are good for nausea and diluted cranberry juice is nice. Have a rest on an afternoon, say no to visitors if you feel you have to.

Making necessary life changes

My husband has been fantastic and I don’t really know how he put up with me at times, as I went from calm to crying to depressed and wondering when I would start to feel better if ever. I wouldn’t look to the future or plan anything. That was when it was suggested I see the Clinical Cancer Phychologist, who actually thought I was coping quite well. I took the decision to give up work which was also hard but due to me not knowing from one day to the next how I would feel I felt it best, but that hit me hard as well. I used to get frustrated but had to accept I couldn’t do what I used to.

Coping with the effects of pancreatic cancer

I still get tired as the day goes on, and have bouts of diarrhoea and stomach cramps but after being given the wrong information on how and when to take my Creon, I now take it 10 minutes before food and half way through as advised by my surgeon. He said not to break the capsules open as they are not as effective in the gut then. We try to go out for a walk when the weather is good, the outdoors seem so much more appealing these days.

Living life to the full

7 months after my Whipple’s we paid a surprise visit to our daughter in Miami, followed by a trip to China on the anniversary of my operation. We did go to the Olympics even though I said I wouldn’t be here and have been to the Rockies, Marrakesh and again over to the USA.

It is now two and a half years since and I am living and loving life to the full…with a few hiccups some days.

First published April 2013

Update May 2014

Nearly four years post-surgery

I am now at 3 and a half years and my situation remains the same. My last CT scan and bloods last November showed no change. I do not get hooked up on what my tumour markers are, I just accept that they are normal. I continue to manage my ‘new insides’ with my Creon and other medication, although I do have hours and days when I do not feel well with the issues that a Whipple’s procedure has left me to cope with.

People constantly tell me how well I look even on days when I do not feel it, my make up works wonders! I am constantly asked ‘so you are cured now aren’t you?’or ‘so you are in remission?’, I find it difficult to explain that as it’s not as simple as that.

Continuing to travel and make the most of life

We have done lots of travelling; Venice, Marrakesh and Paris. The highlight of last year was doing the trip that we had to cancel when I was diagnosed. We travelled to San Francisco where our daughter met us for her 30th birthday, then we travelled down the Californian coast and then up through the National Parks of Arizona and Utah, truly amazing. We also welcomed our first grandchild in February and were in Texas in time for his birth. My husband retired this month so we intend to do some more travelling.

Raising awareness of pancreatic cancer

I have managed to get coverage on local TV and newspapers to raise the awareness of pancreatic cancer and work closely with Pancreatic Cancer UK in the future. I also help with admin work as a volunteer in fundraising at Wakefield Hospice. Along with my specialist nurses and another survivor, we are hoping to launch a support group for Yorkshire in the next couple of months in Leeds.

My advice is to enjoy the good days and make the most of the not so good days and embrace the extra time we have been given.

Update March 2016

5 years of survival

Nearly 2 years since my last update and I’ve been very busy. The drug trial which I was on came to an end last November after 5 years, and even though my chemo had to be stopped, which I found very hard to accept, I continued on the monitoring side. Even though the results of the trial won’t be known for some time, I do hope that it will help others in the future.

Now 5 years has passed since diagnosis I am still ‘under the wing’ of my surgeon which I feel quite reassured about. If ever I feel worried I know I can ring my specialist nurse who will advise and, if need be, arrange a check. I continue to be well overall with the odd day where my insides are not happy, but then tomorrow’s another day. I know how fortunate I am as I am often reminded when I lose another friend to the disease and see the effect it had on their family.

We continue to travel, starting with a celebratory cruise for our silver wedding, we then travelled around Yellowstone and Glacier Park, trekked through Costa Rica and then 1000 miles all around Cuba. No sun lounger for us! And of course we still go to see our grandson in Texas.

I still try to help raise awareness as much as I can and last year had a couple of fundraising events and will be doing so again this year. I still help Pancreatic Cancer UK in many ways and find that this has helped me over the past couple of years. I’ve also made some lovely friends, both patients and those who have lost loved ones through this work. I have so much to thank the charity for.

The support group I set up in Leeds for Yorkshire patients and carers, Panpals, continues to run nearly 2 years after setting it up and I am very proud to have been able to do this. I wish there had been something for us all those years ago when it was needed.

Update October 2017

This month I reached 7 years, hard to believe really.

I still have digestive issues but this hasn’t stopped me travelling to far away places including travelling through Costa Rica, and this year to some beautiful places in India, including staying in a tent at the side of a lake under the stars.

I continue with my voluntary work at the local hospice and other charity work. The Panpals support group I run in Leeds also keeps me busy. I’m also now Nanny to two beautiful little grandsons. I’ve also made some lovely friends through this disease.