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Sue

Posted by: Sue 1 October 2012

Updated September 2014

Sue, 53 when diagnosed with operable pancreatic adenocarcinoma in 2011

Sues Main

I want to share my experience of this terrible journey.

As early as January 2010 I was showing signs and symptoms of pancreatic cancer starting with a change in bowel movements, stomach cramps etc. I also had a very sore mouth. Initially I was diagnosed by my GP with thrush and a stomach bug. After many months of not feeling any better and frequent trips to my GP I was finally given blood tests and told that I had B12 deficiency and needed to have regular B12 injections. I was told that this can happen at my age, I was then 52.

My husband insisted on taking me to A&E

Over the next 12/18 months I was back and forth to my GP, symptoms getting worse with regard to stomach pain, loose bowels and pain in my chest generating through to my back. I was sent for a colonoscopy and a barium meal but both came back negative. On one occasion I sobbed in the surgery and was told they could give me strong pain killers but couldn't do anymore.

On visiting my daughter in another county in August 2011 for my granddaughters christening I had severe pain in my chest which took my breath away. The indigestion tablets prescribed by my GP were no longer working. On this occasion my husband insisted on taking me to A&E. The doctor I saw was very caring and said he couldn't understand why I had not had an ultrasound as he felt my problems could be due to my gallbladder. They were unable to do the test as it was Saturday, I was returning home the following day so he gave me a letter for my GP asking for the test to be arranged. Unfortunately I never had this test as I experienced more severe pain a few days after returning home and again went to A&E and this time was admitted. Following many tests I was eventually diagnosed with a 2cm tumour in the head of my pancreas.

I am very lucky to have been able to have surgery

I underwent surgery, a whipples, in October 2011 at Barts in London. I recovered from the surgery quite quickly and was discharged after only 7 days. Six weeks after surgery I started six months of chemo.

My employer of 21 years decided to pay me off following one phone call from occupational heath so the life I had was gone. However, my husband who has been and still is fantastic decided we would sell up and move 300 miles to be close to our daughter and grandchildren. However, we didn't buy a new house we bought a piece of land to build a house on. My husband felt this would give me something to focus on and it has.

Yes I am very lucky to have been able to have surgery. Initially I wasn't able to look at any websites related to pancreatic cancer but do now and have found this site very helpful in reading other peoples' experiences etc. I know I have a very long way to go and still suffer dreadfully with my bowels and digestion but I am so grateful to still be here. My heart goes out to everyone who is affected by this horrible disease.

Update September 2014

Three years since I had whipple's surgery

In a few weeks it will have been three years since I had whipple's surgery to remove a cancerous tumour from the head of my pancreas. It's not been an easy three years and I've had my ups and downs including being hospitalised for pneumonia and countless other health issues but wow I'm so thankful that I'm still here. Life is different but I'm learning my limitations. Only last week I developed a temperature, shivering and generally feeling very unwell. Do I think the cancer has returned every time I'm a little under the weather? Yes, always. Anyway it turned out I had a urine infection (2nd one in three months) and my blood sugar indicates I may be developing diabetes and my protein is low. However, the good news was my CA19-9 was 2.5 which it has been for the last 18 months (long may it continue). I try to eat healthy foods and attend Pilates and go for long walks with the dogs. I spend time with my grandchildren and since moving back north I've managed to meet up with old school friends that I haven't seen for nearly 40 years. 

My son was in his third year at university studying to be a vet when I was diagnosed and I didn't think I'd see him graduate let alone see him settled in a job. I do ask myself why me and I know people say I'm lucky. I don't feel lucky to have gotten pancreatic cancer but I feel very fortunate to have been able to have the surgery and to still be here to tell my story.