The Chemotherapy Diaries
So it has happened. I’m in chemotherapy cycle 6 + 1 (AKA Cycle 7). The original plan for my chemotherapy was to do 6 sessions before attending a scan to check how things were going with the tumour. After a few chemotherapy sessions, the oncologist told me about the tumour marker CA 19-9, measured in the fortnightly blood tests I do before my treatment day. My CA 19-9 had started at 16,000 in November when I started treatment. It then quickly shot down to around 5,000 in December. The last time I heard about it was in January, and it was around 800 then. I brought the CA 19-9 marker up during a Pancreatic Cancer UK call, and the nurses seemed very optimistic about the drop, especially given the short amount of time it took for the figure to drop this much. They did also concede that 16,000 is high. It was around here that I had a treatment day. The nurse informed me that I was down to have 12 cycles. I either had not initially understood my treatment plan, or my oncology team had decided to extend, given the ‘positive indicators’ from my blood results. I’m not sure which one is true. I haven’t heard anything about the CA 19-9 level in a while, so I’m unsure what it is now.
Chemotherapy cycle 7 started with a few differences from the established treatment morning routine. My mum and Anna usually take me, but Anna was away with some friends in The Cotswolds, and my mum was stuck in London, as the storms had shut down the entire train network. That meant my dad taking me this time. I drove us there whilst puppy Lucy sat on his lap; it’s hard to know what he really thinks of this. He generally says positive things about her, so I think he has a soft spot for her.
Upon arriving at the hospital, I grabbed a new mask, disinfected my hands and reported to the volunteers at the door that I had not developed any Covid symptoms since I last attended the hospital, about 21 hours ago, for my blood appointment. I then went to the appropriate department and signed in at the desk. The process for treatment days at The Christie is to hand in your blue card upon arrival. All appointments that you must attend over the next 2 weeks are then filled in, and the card is returned to you. Sometimes they return it to you minutes later as you sit waiting for your name to come up on the screen; other times, they will find you on the chemotherapy ward and hand it back to you during treatment, and I have once had to go searching for it after finishing chemotherapy by asking back at the desk. It keeps you on your feet. This day, I had barely sat down in the waiting area when the receptionist approached armed with my blue card. “Here you go, love,” she smiled as she handed me the card. “Ah, that was very quick!” I smiled back.
I opened the card and looked at the appointments. ‘Thursday 3rd March: 10:45 Bloods. 13:00 Appointment’. My stomach immediately felt like it had concrete in it. My head sat heavily on my shoulders, and a cloud of dread came over me. It is amazing how little you can do to control your bodily reactions to these things. I’ve known that my scan date is Monday, February 28th, for a few weeks now, so it was inevitable that the follow-up appointment date would be provided soon. I’m not sure why reading it felt so uncomfortable. The final piece of the puzzle that determines what will happen to me over the next 3, 6, 12 months? I’m not even sure what scale the results of the scan could determine; I guess anything from the tumour spreading (which I think is quite unlikely given how quickly I was put into chemotherapy treatment) to it has been reduced in the exact way we needed it to, and I can be put forward for surgery. Both are scary for different reasons, but I am definitely hoping for something closer to the latter, not the former. There will be a whole spectrum of results that sit between those 2 extremes, though, I imagine.
My name came up about 5 minutes later. I’d spent that time texting my family Whatsapp group and a few close friends. The news had really rocked me; I didn’t feel like going upstairs and being put through 5 hours of chemotherapy. Once I was up there, though, armed with this weeks cake (my specialist Pineapple Upside-Down), I quickly got into it again. The nurses were all extremely complimentary about the cake, which helped my fragile baking ego. I was getting comments all morning about it. The other thing that helped was that I was sitting next to a woman fighting bowel and liver cancer who was fantastic company. We chatted a lot for the 3 hours that our treatments coincided. She told me about a friend of hers who had just recovered from pancreatic cancer at The Christie. It sounded like her friend’s initial diagnosis was bleak, being told she had 8 months to live initially. Fortunately, she went onto the Folfirinox chemotherapy, the same type that I am on, and it was extremely effective in reducing the tumour size. Her Whipple procedure had been very successful, and she was now 2 years clear. It was a positive story, especially after receiving the follow-up consultation date for the scan results.
She also spoke of a similar scenario to me with her diagnosis. I can’t remember what hospital she said she was diagnosed at. I think it was one in greater manchester, but she said that her cancer diagnosis was also delivered as a death sentence. Only when she got to The Christie did she meet any hope or positivity about the possibility of beating the cancer. The more people I speak to, the more this story seems to be some form of endemic in the cancer diagnosis field. I wonder why. Perhaps it is simply down to contextual factors: the doctors are there to deliver the initial bad news, which is fairly commonly seen as the worst type of news. We spend our lives hearing about cancer and how deadly it is – it is not easy to deliver a cancer diagnosis to anyone; I appreciate that. The oncology team perhaps has a more positive role in knowing the diagnosis when they enter the process, so they have the luxury of manoeuvring a plan to fight it and instil some hope (where possible). She spoke of going to therapy and being diagnosed with PTSD due to how she was diagnosed; I sympathised with her a lot. I feel the exact same way about how I was diagnosed.
I had my normal struggle during bag number 2, of course. Sweat was dripping off me throughout it for some reason and I felt quite nauseous. I say ‘for some reason’ as if that doesn’t normally happen, but it did seem particularly pronounced on Saturday. By the time I was finished, I was ready to run out of the hospital. I just wanted to be home. My mum had managed to get an early train back and was there to pick me up; routine restored. That meant dad got off the return trip shift.
The first few days of the cycle have been tough. I’ve felt a bit out of it, and I’m regularly experiencing indigestion again, similar to the issues I had before being diagnosed. It does feel more painful at the minute, though. My body is also particularly fatigued. All of it isn’t too worrying; I’ve had far worse symptoms in the past. I just need to get through these first few days then it should get better. There was a nice little pick me up in the form of the below biscuits sent to me by the lovely Larissa. They were to congratulate me on finishing the 40 miles in February challenge. Very cute indeed – thank you so much! The biscuits were delicious too. We tried to get a picture of them with Lucy in the background, but she wasn’t particularly interested in paying attention to the camera.