Sarah and Evelyn

Sarah shares her mum, Evelyn’s story. Evelyn was diagnosed in November 2020 with advanced pancreatic cancer

24 May 2021

In August 2020, Mum went to the doctor with intermittent stomach pain and bloating. She was initially treated for gastro problems, given some tablets and told to come back if it didn’t get any better. By September it was getting worse and in October the doctor took a number of blood tests.

Getting a diagnosis

On 9 October Mum received a phone call from the doctor; her CA-125 levels were raised and the doctor suggested she might have ovarian cancer. Her doctor advised that she would refer Mum for an ultrasound; the hospital called the same day and Mum received an urgent appointment for three days later. The specialist conducting the ultrasound couldn’t find anything untoward and was surprised Mum’s doctor had mentioned ovarian cancer; they suggested all was ok and they’d likely see Mum again in a couple of months. The relief I felt was immense.

However, the pain continued, so her doctor referred her to the Gynae team for a CT scan and biopsy. Four days later, on 10 November, Mum received a letter from the Gynae team; she didn’t have ovarian cancer but had a 5cm pancreatic malignancy. My world felt shattered again. Mum’s next appointment was two weeks later, with the gastroenterology department. It was at this appointment that Mum was told that her tumour was inoperable as it was encroaching on important blood vessels and she would be referred to the Hepatico-pancreatico-bilary (HPB) team for a biopsy and to discuss palliative treatment (chemotherapy and radiotherapy were recommended). I also arranged for Mum to have a private consultation where it was confirmed the tumour was inoperable but suggested Mum would be a good candidate for palliative treatment (she was relatively fit and healthy). It took over a month for Mum to get an appointment with the oncology department to discuss her treatment. Prior to this she had a PET scan, EUS and biopsy. It was at her appointment with the oncology consultant, on 18 December, that adenocarcinoma in the head of pancreas was confirmed; she was also told there was evidence of spread, to the lymph nodes and liver.

Managing symptoms

Mum was due to start chemotherapy (FOLFIRINOX) on 08 January 2021 but sadly passed away two days after. Mum never started her treatment as she presented to A&E a week before due to being severely jaundiced, fatigued and out of breath. At hospital they also discovered she had sepsis and pneumonia and that the cancer had spread and was now blocking her stomach and bile duct. Whilst Mum was in hospital, a stent fit was attempted but it wasn’t tolerated. They were going to attempt a PTC (a stent through the skin) a couple of days later but unfortunately Mum deteriorated very quickly and never made it. During Mum’s diagnosis, she was prescribed CREON to help with food digestion and Zomorph and Oramorph to manage her pain. She also took Senna and Omeprazole. Pain was the biggest symptom for Mum and some days she found it difficult to manage. She was also very fatigued and had little appetite towards the end.

I knew time was against us

From the moment Mum was diagnosed, it consumed me. I spent what felt like forever online, researching the disease and looking for alternative methods of treatment. I often looked for ‘positive stories’ to give me hope and wanted to believe that my Mum had such a strong spirit she would defy the odds and miraculously outlive all the stats. It was a very trying time, particularly as two weeks before Mum’s diagnosis I had given birth to our second child. We also have a two-year-old who Mum doted on. All Mum ever wanted to be was a grandmother and the thought of her not seeing our boys grow up pained me. I was so frustrated with the perceived delays in referrals and just wanted her to start chemotherapy in the hope it would shrink the tumour and stabilise her condition. I knew time was against us.

Throughout Mum’s diagnosis, she remained positive and dignified. Other than pain, it wasn’t until the last month you’d have known she was unwell – she just carried on as ‘normal’, until the fatigue and pain really took hold.  She never once expressed any signs of bitterness, anger, or ‘why me?’. The fact that Mum very likely didn’t have long left was the elephant in the room. After reading Bryony Thomas’s ‘Does Positivity Cure Cancer’ blog I recognised that I was definitely guilty of ‘we must remain positive and cut out all negativity’. I do wonder whether I added an extra burden or pressure on my Mum. If I had been aware of this, I think I would have been more mindful and considered in my approach. Hindsight is a wonderful thing!

Coping with loss

Since Mum passed away, I have recognised that consuming myself with ‘what ifs’ doesn’t help my healing process. When I let go of my anger and frustrations and realised it was the cancer that ultimately killed Mum, and not the perceived delays in her treatment, or anything to do with Mum’s will to live, it helped. In Mum’s case, it’s highly likely that palliative treatment would have only prolonged the inevitable outcome; yes I hoped she would have been a super responder to chemotherapy and selfishly wanted her to hang around a lot longer, but at least she was spared any side effects and too much discomfort. I feel that her short diagnosis, and response to it, was very dignified and perhaps the best way to go. If given the option though, Mum absolutely would have given chemotherapy a go.

Doing something positive

I know I can’t change Mum’s outcome but going forward I will continue to campaign and raise awareness of this disease. Knowledge generates interest and along with friends and family, we have already raised over £5,000 for pancreatic cancer in Mum’s memory. I recognise that early diagnosis and intervention are the key to better outcomes and survival; and just because Mum’s outcome wasn’t a positive one, there are positive stories out there and until your loved one’s journey is over, there is always hope. Everyone is unique and their own statistic.

Finally, when you are faced with a loved one’s early demise, you might think you won’t be able to cope and you struggle to comprehend it; it’s very overwhelming. But you do find a way to carry on and discover a strength you didn’t know you had. I have good days and bad days. Some days I really cry, sometimes I just get a lump in my throat, and some days I don’t cry at all. But every single day a memory of my Mum pops up in my head that makes me happy and every single day I find a reason to laugh and be happy about something. Some days these reasons are few and far between, but every single day I smile about something.

May 2021