Jenny found out she had stage 4 inoperable advanced (metastatic) pancreatic cancer when she was 56. She shares her story of diagnosis, treatment, and how she intends to keep living life to the full for as long as possible.
When the pandemic hit, I was a busy businesswoman running a company of 20 staff across the UK. To say 2020 was a challenging year to run a business is quite an understatement but, with a lot of work, we got through our clients’ challenges and looked towards a successful future.
However, I was feeling extremely tired by the end of January 2021 and thought that it was time to take a step back and, when I started to get back pains and was feeling bloated around mid-March, I went to my GP to see what they recommended for me to get some of my energy back. Although I didn’t think it at the time, I was extremely lucky that my GP recognised the symptoms of cancer and referred me immediately for tests.
Several weeks later, at the end of May 2021, following numerous blood tests, scans, and investigations, I was diagnosed with Stage 4 advanced (metastatic) pancreatic cancer. I had secondary cancers on my liver and lungs. My prognosis, if I underwent chemotherapy, was 2 years to live.
It was a massive shock.
By the end of June 2021, I had a stent in my duodenum (the first part of the small intestine), an implanted port in my chest to receive my treatment and had started a course of FOLFIRINOX. The aim was to complete the 6 courses, see how the cancer was responding and then decide whether to carry on with it.
My first session on FOLFIRINOX was challenging and I was extremely sick to the point I doubted I would be able to carry on with the treatment. I had already lost 20 kilos during the previous few months. But the consultant reduced the dose and, after that, I had no nausea throughout my treatment.
Chemotherapy affected how I feel, and how I look – as well as my confidence
After the third session I started to lose my hair. I have lost about two thirds of my hair, eyebrows, and eyelashes. This was traumatic, but I had already had my long hair cut very short in preparation, to minimise the impact.
My skin changed because of the treatment and is now very sensitive to facial products which has meant I have had to change my whole makeup drawer to hypo allergenic. I attended a ‘Look Good, Feel Better’ workshop to pick up a few hints on managing the changes to my appearance, which helped my confidence.
The scans following the first 6 sessions showed the cancer had stopped growing so I undertook a further 6 courses of the same chemotherapy. They were successful too, with the cancer still dormant and no longer seen on my lungs or liver.
My feet and hands are experiencing neuropathy, which is tingling or numbness (my feet are the worst) and this did increase during the second course of treatment, but the cold weather doesn’t help that either (I am writing this in February 2022). I am used to wearing thick socks (all the time!), cotton gloves about the house and thick thermal wool gloves when outside.
Other than the eternal challenges of managing the PERT (Pancreatic Enzyme Replacement Therapy) to enable absorption of nutrients that my pancreas can no longer provide me, and the ongoing management of my diarrhoea, I have been lucky enough to have minimal side effects from the chemotherapy. Nutritious meals for people with duodenal stents (without having to mash or puree everything) has become my new research hobby!
Finding help and support through difficult times
I get fatigued and I have attended many sessions with Pancreatic Cancer UK and my local hospice to try and learn how to slow down. I find the fatigue frustrating because it stops me doing everything I want to do. Having lived my life at 100 miles per hour running my business (and loving every second of it), learning to “chill” has been my biggest physical battle so far. I am still fighting that battle! Now I am channelling that into fundraising for Pancreatic Cancer UK.
By far the biggest challenge in all of this has been the impact on my mental wellbeing and the strength it takes to get through the day sometimes without dissolving into tears, which doesn’t really help me but helps those that love and care for me even less. I considered myself resilient, having worked helping financially distressed businesses most of my working life. But nothing prepared me for the time and focus you need to live in this moment, to learn to enjoy that moment worry free and switch off the nay-sayer in your head that tells you ‘You cannot beat this.’
I had a break in my treatment after the second course of chemotherapy, due to a change in consultant, and battled with the ‘abandonment’ issues which patients refer to when their course of treatment comes to an end. Mental resilience has tested me at every stage of this journey.
In business, I learned you don’t know it all (and shouldn’t!) so find an expert on whatever it is to help you. I therefore reached out to all the help offered to me from Macmillan, Maggie’s, the Hospice of St Francis and Pancreatic Cancer UK. The support has helped both myself and my loved ones to navigate through this unknown terrain and has provided great comfort when we needed it, particularly in the early days when you are swamped with medical appointments, medical terminology you don’t understand and documentation on side effects that scares the life out of you.
I learned not to Google anything about my condition and was lucky, because of previous help we had received with a relative, not to think that a hospice is a place of last resort. It isn’t, they are there to help anyone with a life-threatening condition navigate through what is, otherwise, a very lonely journey.
There’s more to life!
I know I have a terminal diagnosis, but cancer is not my identity. I must learn to live with it as long as I can. I will not give it the time or energy to help it succeed, because I have other things that deserve my time and energy more.
My treatment continues again, with another course of chemotherapy next week, and I intend to continue for as long as I can. I still have much I want to do!