I was diagnosed with triple negative in early September but didn't start treatment until November.
I started with EC and immunotherapy and was ill for the first 5 days, stomach cramps and nauseous. Water used to make me sick.
The next week was paclitaxel which caused anaphylaxis. I met with my oncologist at the end of that week and he said I'd go onto the more expensive version which should be fine. He told me to phone his secretary the following Tuesday to find out when my next treatment would start. She couldn't answer me so asked one of the team to call me back.
They did so saying that they had arranged a meeting with the oncologist. I replied that I'd already had one and explained what had been decided. She blustered saying there were no notes but it was an antiquated system and then said she'd just had an email from the oncologist saying they were still waiting for pharmacy.
I phoned the next week, and the following week but he'd gone on holiday. His secretary arranged for me to meet another oncologist. We meet online the next day but she said that my liver function tests were 9 times what they should be so she was going to arrange to have me admitted to find out whether it was the chemotherapy that was causing it in which case they'd have to stop treatment and go straight for surgery.
I had a scan which showed the cancer had spread to my liver. I had another scan which showed it had spread to my spine. I was discharged last Friday with an appointment to see my oncologist on Monday 9th.
I'm furious with my oncologist. During my first consultation with him he was continually answering texts and ignoring me. The nurse had to reprimand him a couple of times and did the bulk of the information sharing. She apologised again when we were leaving explaining he was in the process of buying a house and was checking that the money was being transferred.
His negligence ordering my meds may not have been the cause of the metastasis but it won't have helped.
The specialist liver nurse was also furious about my treatment plan and emailed all my team saying that no patient should have to be chasing appointments.
I'm devastated by the whole thing and worried about whether or not I'll be able to continue treatment.
Cancer is hard enough to cope with without all of this nonsense.
Thank you for reading x
