Tuula, diagnosed in 2015 with inoperable pancreatic cancer

A story written by  Samantha Hobden about her beloved mum, Tuula

Tuula Wales 2007

Hindsight is a wonderful thing, especially when I look back to the summer of 2015.  “If only” was something I said and thought a lot about last year, since losing my lovely Finnish mum to pancreatic cancer.

Why did I not say or prompt a conversation with
mum when the whites of her eyes were yellow back in late spring? Why did I not pick up on the amount of “stomach bugs” she was having where she would have to take to her bed and blame it on catching them from her young grandchildren? Why did I accept the story that she had eaten earlier when she wouldn’t eat with us when we had dinner, with the real reason being it was too painful for her to eat? Why did we notice her tiredness but just put it down to her advancing years? Yet these were real symptoms. Actually they were deadly symptoms of pancreatic cancer.

On the last day of May, I had an early morning phone call from mum who was babysitting overnight for my sister. She had been in terrible pain overnight and wanted me to take over looking after the children. She wanted to go home, take a couple of paracetamol and go to bed for the day. When I arrived, she was curled up in the fetal position in agony. After much resistance from her, she finally agreed to my demands we take her straight to hospital. I look back now at that day as the last time she was the “mum” that we knew and loved….

After much tests and doctors visits, mum was transferred that night to another hospital with a diagnosis of an infected gallbladder which was to be treated with intravenous antibiotics. The next day when I visited, she was in pain and her tummy was very swollen. Over the next few days, she wasn’t improving despite further tests so they decided to change the antibiotics and do a CT scan. The results were pockets of infection and fluid on her pancreas and spleen. More antibiotics were given and doctors were discussing draining this fluid from her stomach. Days followed where doctors were disputing between themselves feeling that this procedure was too risky to perform. We were then given a “confirmed diagnosis” of pancreatitis. Of course the cancer word was discussed but no tumour(s) were found, just this fluid infection on her organs.

Mum remained in hospital for three weeks with no improvement. More tests were carried out and one Monday morning with my sister fortunately visiting, a consultant came to mums bed surrounded by a group of trainees. He announced that he had a top radiologist look at her scans and it was in his opinion that mum had advanced inoperable pancreatic cancer. As you can imagine, my sister and mum were completely floored by this news especially with a six to nine month outlook of the time she had left…

I visited later on and it was heartbreaking and devastating. How do you all deal with this news? The hospital decided to send mum to a hospital two hours away which had an advanced Endoscopy Unit to attempt to do a biopsy to confirm this diagnosis. She was transferred and an endoscopy was done the next day. The results were confusing when I called the hospital. Yes, she had gallstones but no sign of cancer?? What an emotional rollercoaster!

She was discharged and we bought a very poorly and frail mum home. The next few weeks were confusing if I look back on it now. They found no cancer, but yet a doctor had said she had cancer. Unbeknown to us, the endoscopy had only been done in her bile duct. There was no cancer there but it was raging all over her body and it wasn’t long before it really started doing its work.

Mum deteriorated each weTuula Walesek although there were some days better than others. More hospital admissions and more discharges followed.  Mum had lost stones in weight and was very pale and yellowy. She could barely take a step in front of each other and anything would completely exhaust her. My sister and I were looking after a dying woman with no help, because the cancer box has not been clearly ticked. We had appointments to go to and more tests but no real answers. I remember a beautiful sunny day in early August when I helped mum into her garden to sit down and enjoy some sun. To see her in daylight out of a hospital environment and out of her chair from indoors completely shocked me, it took my breath away. She looked like a ghost. I told my husband later that day that she was dying, you could just see it.

Mum’s breathing got worse and she was struggling to get upstairs. After another hospital visit, she was admitted to have a chest drain as her lungs were filling with fluid. They then sent this fluid off for analysis. After another week in hospital she was discharged but came home very frail. A few days later we received a call from her consultant to come in to see him. I knew then that we were looking at a grave situation and I know she did too. I drove mum to the appointment a few days later where the consultant took her hand and told her she has advanced pancreatic cancer which was terminal. The fluid from her lungs was full of cancer. He wouldn’t give a “how long” but from his expression there was no longevity to it.

A horrendous few days followed but thankfully we received some help and support from the Macmillan team. Mum’s breathing continued to decline and she was hospitalised again. Little did we know then that this would be the last time she would leave her home and never return. A doctor spoke to me a few days later to tell me in her opinion, mum had only about two weeks left, if that.

Mum was transferred to our local hospice to what we thought would be her final home to end her days. They stabilised her with pain relief and steroids and she remarkably picked up. But steroids were only buying her time. We celebrated her 71st birthday with her favourite foods and it was a lovely afternoon with her family around her. With her condition stable through a cocktail of drugs, mum was transferred to nursing care which had an experienced palliative care team.

She deteriorated slowly over a period of ten days, each day getting weaker. A syringe driver was fitted and we were warned by the nursing team that she would fall into a coma. The last time I spoke to mum “as mum” was on the Sunday. We both knew time was running out. It was incredibly upsetting and just heartbreaking to see a disease completely rob us of our mum and a granny. She died a few days later, peacefully with me and my sister by her side. This was six weeks to the day of the consultant’s appointment giving us the terminal diagnosis. It was also the same week that our father died some six years earlier. The second week in October will now always be a difficult one….

I spoke with our local doctor some days later and mum’s cancer was not text book. It wasn’t rare but to this day they never found a tumour in her pancreas, just pockets of fluid. Looking back, it was so quick as this cancer certainly does not give the luxury of time.

I miss my mum terribly and life is certainly much emptier without her. As they say, “you never get over losing a loved one, you just learn to live with it.” This is so incredibly true. All cancers are grim, but pancreatic cancer is brutal. Mum dealt with this cancer with dignity and hope. So let’s hope in the future survival rates for pancreatic cancer can rise and successful treatment is found to those who desperately need it. However, we will never forget those who lost the battle.