Meet Chrissie – our newest Ambassador
Hello, my name is Chrissie and I’m delighted to become an Ambassador for Neuroendocrine Cancer UK, the charity led by a lady who is very close to my heart, Catherine Bouvier.
Why? Because she was my Clinical Nurse Specialist (CNS) at The Royal Free Hospital in London over 18 years ago, when I had my secondary Neuroendocrine Cancer tumours (metastases) in my liver, managed.
I first became ill when I was 24, whilst pregnant with my daughter, Amie.
After several months of tests, we discovered a tumour on the tail of my Pancreas. It was also secreting parathyroid hormone receptive peptides, causing my calcium levels to be very high. I presented with unusual symptoms of tooth\jaw ache causing me to have the appearance of having drunk two bottles of whiskey (or so my GP told me afterwards) and no ability to carry out simple daily tasks. The tumour was removed along with my spleen, and I have had multiple recurrences and surgeries over the years since then.
The most significant of which was a liver transplant nearly 17 years ago, after having a recurrence in my liver 5 years after the primary tumour was removed. I’m pretty certain I was the last Neuroendocrine Cancer patient in the UK to be allowed to have a liver transplant. Hopefully that might change for one or two of us in 2023.
The transplant has most definitely allowed me to witness my daughter finish school and university and begin a career in mental health.
Even after all these years and many stays in hospital, and currently being classed as no evidence of disease (NED), I continue to be monitored to keep me healthy and clear of disease. We get used to being incurable, but treatable.
I’ve educated myself and made sure I have a good understanding of all my treatments and blood results – but I don’t over investigate and try to steer clear of Dr Google. Personally, I find that to do that overwhelms me.
I am always aware of what is happening with me and my body but I try to follow the path of ‘living with’ Neuroendocrine Cancer, as you would any other chronic condition.
So, as an Ambassador I believe I can help people learn to manage their diagnosis and to try to live a full life with the disease.
Someone recently asked me what’s the most amazing thing I’ve done whilst living with Neuroendocrine Cancer for over 25 years…. I’d say it has to be last year, doing a cycle ride from London to Paris on my push bike! I was determined not to let cancer – or a liver transplant – stop me.
I look forward to being an Ambassador and offering help and support in whatever way I can to any Neuroendocrine Cancer patient who needs it.
Hope to meet you soon.
Chrissie