Leonard & Linda

My name is Leonard and this is my wife Linda’s story.

In late March 2017, Linda had been complaining of stomach problems. She went to her GP who at first suspected it was diverticulitis (an infection or inflammation of the large intestine) and prescribed medication and dietary advice.

In April she was no better and fainted in the GP surgery. Her GP took some blood tests and on that evening she received a phone call telling us she needed an urgent CT scan. This was arranged for the following day but she needed to be admitted to hospital immediately.

The following day the results of the scan were in and a junior doctor said ‘I am sorry we have found a lump on her pancreas’.

Treatment

Linda was suffering from jaundice and was transferred to a specialist hospital for a biliary stent to be fitted as the lump was pressing on her bile duct and blocking it. The surgeons suggested a Whipple’s procedure, but this was delayed as Linda had to do tests to make sure she could withstand the procedure. Linda was optimistic about the outcome but once the surgeon started the procedure he found the disease had spread and it was aborted.

Linda then undertook a gruelling 12 cycle dose of Folfirinox chemotherapy via a PICC line. This was controlling the disease but it did have some side effects that were sickness, fatigue, hair loss, numb and tingling fingers and mouth ulcers.

A break from treatment

After completing the 12 cycles of chemotherapy, Linda had a break from treatment and felt a lot better with the side effects having a less pronounced effect.

We had days out and a good holiday with our daughters and things appeared stable, but in December 2018 Linda was vomiting bile in large amounts and was admitted to hospital again.

After a number of weeks of tests a duodenal stent was fitted. Linda recovered and in February 2019 started another 12 cycles of Folfox chemotherapy. But after only two cycles Linda was back in hospital. Linda had more scans and tests and was diagnosed with having pneumonia. She was treated with medication but she became weaker and weaker as the weeks went on, and her appetite faded to the point where she was hardly eating at all.

In April 2019 Linda returned to hospital with a swollen tummy and after draining approximately 2 litres of fluid she felt a little more comfortable but still very weak. Linda had no strength in her legs and it was impossible for her to walk and she became bed bound.

Caring for Linda

The worst part was when the doctors told us there was nothing more they could do as the cancer had spread out of control and was in her liver. Linda was discharged home by ambulance and we cared for her there as this was her wish. The jaundice returned with a vengeance and Linda deteriorated, sleeping most of the day and being unable to talk. Linda finally passed on the 22nd April 2019.

I am totally devastated, I have lost my soul mate after 41 years of happy marriage, my daughters are as well as we all loved her so much. All my plans for retirement with Linda are in tatters.

Campaigning for early diagnosis

I know that the all doctors Linda saw did their best for her with the resources and treatments available to them, but it is clear to me that the government needs to step up to the plate with adequate funding. Not only do we need a test to achieve an early diagnosis, but we need to act quickly to avoid any delay in treatment and improve and apply better treatments so that others do not have to suffer the pain, suffering and devastation of losing a loved one to this dreadful disease. I can certainly testify that I would not wish anyone to have to experience what I am now.

I fully understand how difficult this disease is to spot by GP’s, who are doing a wonderful job and are trying their best. But I truly believe that if the doctors, researchers and scientists had the same profile as other cancers we would be well on the way to spotting this disease far earlier, and possibly even beating this dreadful disease.

June 2019