Liz - for Pancreatic cancer UK


Liz shares her story of having surgery within 12 days of her pancreatic cancer diagnosis

11 March 2019

‘I haven’t had any mince pies’

In December 2017 I started to feel unwell and I couldn’t eat. I was on Slimming World and just thought that my shrinking appetite would help the weight loss. Two weeks out of four I went to Slimming World and I was awarded ‘Slimmer of the Week’. I kept telling everyone that it was because I wasn’t eating mince pies – I love mince pies. I was quite smug going around saying ‘I haven’t had any mince pies’.

Towards the end of December, I began to think that I was really not well. That was when I noticed that my urine was really dark. I thought I’d get the holidays out of the way and go to see my GP. I was so stupid.

Then I started to have oily stools and not feeling very well at all. My daughter came to visit and asked me why I was so orange and I hadn’t even noticed. When I looked at myself I looked as if I’d been “tangoed”, I was that orange. I saw an out of hours GP on Sunday, I was admitted to hospital on that day. I had lots of scans that day.

Surgery within two weeks of diagnosis

I was first diagnosed with pancreatic cancer on the 6th January 2018 at my local hospital. I then went to a specialist hospital on the Monday where they confirmed I had pancreatic cancer, and my surgery was confirmed for the Thursday.

Hand on heart, I know I have been extremely lucky to have surgery twelve days after my diagnosis. I’m living proof that it can be done, if it’s done properly. I think people need to know that in some cases surgery can happen within two weeks of diagnosis.

It wasn’t a pleasant operation and it took over nine hours. I think I was quite shocked at just how severe and how traumatic it was. I was on high-dependency for about 36 hours after the operation, and was in hospital for a week. I have to say I was quite shocked that I was being sent home so quickly. But apart from not eating very well and obviously being sore from surgery, I didn’t have any side effects as such and I took my time recovering at home.

My referral to the specialist hospital, my post-operation treatment afterwards, and my follow up at my local hospital all went very smoothly.

I’ve had six months of chemotherapy and then chemoradiotherapy to decrease the chance of small cancer cells at the margins of the tumour surgery becoming active. The care and support that I got was unbelievable.

Meeting other people with pancreatic cancer

Since my surgery I’ve met a couple of people who had also been diagnosed with pancreatic cancer and joined a Facebook group for people who have had the Whipple procedure. I can’t believe how awful some of the stories I hear are. I met so many people who had lots of delays and cancelled appointments, some people have really struggled. I was so lucky that I received the treatment that I did. I honestly could not fault my medical team at all.

When I went to a Living with Pancreatic Cancer Support Day run by Pancreatic Cancer UK, I met three people who had terminal cancer and I just kept thinking about how lucky I’d been myself.

Life after Whipple’s

At the start of the year I thought I was dying, I honestly thought I was dying. I had a few side effects from the chemo but as soon as that was out of my system I could start up a social life again. Obviously I have to plan how far I’m going and how far I have to travel, but I’m actually starting to have my life back. I know when I start the next course of treatment there may be some side effects that could affect my bowel but I’m just making the most of it until I’m restricted again.

Every day I have to take lots of powders and shakes. This past week I’ve put on half a stone and that’s the first weight I’ve put on since surgery, which is almost a year ago. I’d lost more than two-and-a-half stone; the doctors were very worried about my weight. I was very underweight but just in the past two weeks I suddenly have gained a little weight and I’m eating roughly what I like. I do have a lot of trouble with my bowel but we’re not sure if it’s because I’m not taking enough Creon (enzyme replacement therapy), so I’m actually waiting for a colonoscopy.

All of this has scared my family, my daughter in particular. I think it made her realise that her mum can be vulnerable. Everybody’s treated me with kid gloves but nicely so. Even though I’m one of the lucky ones, it’s always at the back of my mind and I don’t know what’s round the corner.

Awareness of pancreatic cancer

Every time I say I have pancreatic cancer people say “oh that’s what Patrick Swayze died of” and that’s all they know about the disease. I was exactly the same until I had it. I’ve had breast cancer twice and everybody knows about breast cancer: the signs, the symptoms, the treatment. But people don’t even know what the pancreas is. When you start coming across more and more people affected by it and you realise that it’s quite a common cancer.

I have some friends that were absolutely flabbergasted when I told them I had pancreatic cancer. Five days before I went in for surgery I had a friend come down to see me, they were crying and unbeknownst to me they knew someone who had died of pancreatic cancer. I only found that out last week, so they obviously knew the impact.

February 2019