After 15 years of living in New Zealand, my husband and 3 children decided to move back to Europe and on May13 2019, as all our belonging were loading on a shipping container and our house being sold, I whizzed to a quick PG appointment to share some concerns I with changes in bowel habits. Apart from that I was as fit as I ever been, having jus completed a half marathon in under half an hour. A week later a colonoscopy revealed a colorectal tumour and the CT scan shows that it is limited to the bowel.
On July 24th 2019, instead of flying to Europe, I underwent bowel resection surgery, which shows some spread to local lymph nodes, although I was relieved not to need a stoma. In the meantime we moved in with my mother-in-law, sharing a room with the kids and house-sitting for friends here and there, whilst I proceeded with 12 cycles of FLOFOX. My CEA levels were at 4 ug/L before surgery and at 1 ug/L after surgery/chemotherapy.
We finally make our way to France in January 2020 and left the kids with their grand-parents while my husband and I headed over to the UK to find a house to rent, enrol the kids to schools etc. - then COVID hit, which mean we ended up with an empty house as our furniture couldn't get delivered and the school wouldn't enrol the kids (ended up with 9 months out of school, F2F or online). Had to stay with family in France for 6 months while I started working remotely and my parents attempted some home schooling.
Managed to get my CEA test done in France in April 2020, which was at 1.4.
Finally settled in the UK late August 2020, getting our belongings back after 18 months was like Christmas, especially for the kids who were thrilled to get their toys back, needless to say most of their clothes no longer fitted...
September 2020: managed to enrol with a GP practice get my CEA test done, which was at 2.1. As I was on a waiting list to see a colorectal surgeon, I email my surgeon in NZ who advise a CT scan if my CEA reached 2.5. Finally I got an appointment with a colorectal consultant who advised for 6-monthly CT scans.
November 2020, the CT scan spotted a nodule in a breast, but further investigation reveal it is just a benign cyst. Lungs and liver are all clear at this stage.
June 2021, as I don't hear anything back from the colorectal team, I reach out and find out that I have been discharged following the last scan -after some time on the phone they agree to have me back and book me for a colonoscopy and scan. The colonoscopy is clear and I get told the scan is too, although I found out a year later that there were 2 small nodules in the lung that they didn't think were significant enough to tell me about, further investigate or even monitor! In the meantime, my CEA is creeping up.
January 2022: CEA was at 4 ug/L. This concerned me as this was back to pre-treatment levels. I rang my Surgical Care Practitioner who assured me that such level was not of concern as this biomarker can be quite unreliable and, as my last CT scan was clear, there was nothing to worry about. She mentioned that we could repeat the scan but would have to make some sort of reason to justify it, e.g. abdominal pain, and added that getting too many X-rays was not ideal. I was offered mental health support to help me cope with anxiety around cancer recurrence.
May 2022: CEA was at 6 ug/L and I had a CT scan on July 5th 2022, which revealed the presence of 3 nodules in the lungs, which were confirmed to be disease recurrence by biopsy in September 2022. The consultant who had been doing my follow-up, admitted that the CT scan performed in June 2021 was already showing 2 nodules, although because of their size it was not worth further investigation at the time.
I am now back on chemo, hoping that 12 cycles of FOLFORI/FOLFOX with stop the progression and that I can be eligible for tumour resection.
I've reduced my working hours to 20hrs to try and cope with it all and try to keep exercising.
My biggest struggles are:
- prognosis: how long will I be around for my kids?
- why was my cancer recurrence not picked up earlier, with nodules, although small and a consistent increase in CEA, surely these red flag should not have been missed??? I have laid a complaint with the NHS, which is currently under investigation.
