The Road to Recovery
The Road to Recovery series has been quiet for a while now. During my first appointment at The Christie, I was warned that things tend to go quiet during chemotherapy. You get into a routine that synchronises with your chemotherapy cycle. That means fewer face to face appointments, fewer scans to determine the issue and a period of relative normality. Not the normal normality, of course, but the normalcy that is your chemotherapy cycle. For me, this is generally the following.
Treatment is on Saturday, which takes 5 to 6 hours and results in me going home with a line attached to a bottle that is full of chemotherapy drugs. My line is then removed by the district nurses on Monday. I feel especially ill, sick and tired until Wednesday or Thursday. Mouth ulcers form around Friday and remain until Tuesday. Wednesday or Friday I do bloods (if I have a call with the oncologist in that cycle, then I do them Wednesday otherwise they are on Friday). Thursday is my meeting with the oncologist to discuss how things are going (if I have one scheduled). Then it all repeats again on Saturday when I am back for more chemotherapy at the hospital. Sometimes there are ad hoc things in-between, but not too often with the oncology team. My other commitments are mostly attending various groups and/or calls with charities like Pancreatic Cancer UK.
It sounds a bit weird to put it like this, but the cycle does make time fly. It’s tempting to use the phrase ‘Time flies when you’re having fun’, but that would be very facetious of me. I wouldn’t do such a thing. There is plenty of fun to be had amongst all the cancer chaos, though. The staff at The Christie are always friendly and enjoy having a laugh with you. I mostly enjoy the car rides to the hospital, usually done by my mum, by Anna, or both if I’m particularly lucky that day. I say mostly because the car ride home from treatment days is awful, and I never enjoy that one, even if puppy Lucy is usually in the car to keep me company. I’m feeling too hot, sick and tired to deal with any of it.
There are also the little pieces of comedy that generally float around the world if you’re looking for them. Today, as I sat waiting to be called into my blood appointment, the name ‘Stanley Blood’ came up on the screen. Right place, right time, I guess. He was made for this. I sat waiting, fantasising about how he was probably a veteran of the hospital. In my head, I saw him attending his 1000th appointment and being given the holy title of ‘Blood’ for his long servitude and bravery to bloods. There is a big banner above the door going into the bloods office; all of the nursing staff and patients are clapping and whooping as he sits in the chair and exposes his arm. It was a stupid image, but it kept me amused for a few minutes. I didn’t even see what the actual guy looked like because I was humouring so many thoughts.
He probably gets sick of people commenting on it in reality. It must happen all of the time. I regularly get called out by the staff for hating having my blood taken but having plenty of tattoos. “How can you hate doing your blood when you’re covered in tattoos,” they ask in playful bewilderment. “I’m a complex person; what can I say,” I quip back, looking into the distance and squinting slightly.
Today I had a funny exchange with my nurse about my tattoos. I usually let the nurses take blood from my right arm. This nurse was sat on the left side, though. As I sat down, I told her that I preferred blood being taken from my right arm. I then decided in my mind that this was an opportunity for me to grow as a person. “Actually, let’s do it from the left.” The stoic mentality is clearly working; I’m becoming a beast of burden. As I rolled my sleeve up, my ensō tattoo was exposed. “I like your tattoo,” she said, not ready for the depths I was about to take the conversation to. “It’s called an ensō. It’s my most recent tattoo; I only got it a few weeks before I first went into the hospital. The symbol is used a lot by people who practice zen. When it isn’t a closed circle, it’s supposed to represent the ability for movement and change, an appreciation of imperfection. It’s how I know the universe was fucking with me when I was diagnosed.” She laughed, and I was happy because I could see her attention trailing off towards the end of the lecture. She extracted my blood, and everything was fine. I tried to look in her mouth when she smiled to see if she had any vampire teeth, but she didn’t. I’m sure it’s a prerequisite if you’re going to take a job as a blood nurse. I can’t think how else they’d convince people to stab needles into others veins all day. It totally grosses me out.
(They’re amazing people, this is all written in jest).
My chemotherapy routine is about to be disrupted slightly, though. In 10 days, on February 28th at 8:30am, I will be attending the all-important CT progress scan. This will be the first time that my tumour has had any imaging since my last scan in October, leading to the prioritisation of my PET scan. The PET scan then lead to the prioritisation of my endoscopy, which determined my ailment. Pancreatic Cancer. Damn Daniel, wasn’t that a shock? It feels like a lifetime ago. I can’t remember what it was like to not have pancreatic cancer now, but that’s for another blog post. The scan also happens to be the same week as my birthday, which is March 5th. Guess when my next treatment day is after tomorrow… March 5th! That means I may end up having my scan, getting the results and then having my birthday/treatment all in 1 week. What a rollercoaster it is lining up to be!
I’m still undecided how I’m feeling about the scan. As the chemotherapy feels like it’s going well, I do have a quiet confidence that this has to be a good thing. That also worries me, though, as confidence is wasted on cancer. I went into A&E initially confident that I’d be prescribed some pills or diagnosed with some minor food allergy, and that would be that. My symptoms seemed minor to me – I frequently got an uncomfortable indigestion feeling in the evening when I went to bed, which remained until I got out of bed in the morning. It wasn’t something I was that apprehensive about. Even when I started getting the bouts of severe abdominal pain, I still thought it was just an elevated form of the symptoms with the same root cause. I guess it was, technically, but I thought the root cause wasn’t a huge problem, so this didn’t worry me too much either; I just wanted it sorted. At the time, my remedy was to try to stop eating late. I suspected that it was a wheat allergy, so I was trying to avoid eating as much bread. It is quite laughable now I know what was actually going on, but naivety is a good technique for self-preservation, and I was exercising it to its full capacity.
What I do know is that the scan will allow us to know what is really going on with the tumour, no matter how good or bad. From there, my amazing oncology team can react in whatever way they deem most effective, and it will hopefully be another step towards getting better. Only time will tell whether it is radiotherapy, chemotherapy (if doing more chemotherapy is even an option; I’m not really sure), nano-knife or surgery (which would be an incredible outcome). Right now the tumour exists in a similar state to Schrödinger’s Cat in my mind – it has both spread out of control and completely disappeared due to the chemotherapy. It’s a confusing state to be in, so it will be good to get a concrete understanding of where we’re at.
As of today, I decided to arrive 20 minutes early to my blood appointment on purpose. This way, I thought, if I have to wait for an hour, as I regularly do, I’ll be able to get back out 20 minutes earlier than I would have anyway. This would mean me getting home slightly earlier, allowing me to run before lunch instead of being too hungry and having to wait until after. I would then have to wait for my food to digest, meaning I wouldn’t be able to go until about 16:00. The good news is that the plan was a resounding success. I had to wait 45 minutes and was back on the road by 11:30. I then got home by 12:20 and was ready to face Storm Eunice by 13:00.
Honestly, I impressed myself today with the run. I managed to run 10K in a storm, all thanks to my new Asics running jacket that arrived today. An elastic band in the hood stops it from blowing down in the wind, and there was plenty of wind today to test whether it worked. It really did work, too! Everything about the jacket did – I was warm, dry, comfortable, AND it looks good. On top of that, I got my chemotherapy 10K PB.
As I ran thinking about how good the jacket was and how horrible the weather was, I decided I’d try and tweet Asics when I got home, encouraging them to donate to my Run 40 campaign in return for my field testing of their product. I did just that, and you can find the Tweet below. I’m 99% certain it won’t work but you can’t blame a guy for trying. Feel free to like and share it if you’re on Twitter and want to help!
So, it will probably be a stressful period as the scan date approaches. Tomorrow is another chemotherapy day, which is my current focus. Get through the weekend, then worry about whatever comes next. I have to remind myself that the scan can also bring good news, not just bad; sometimes, it is easy to forget that. Like I said, though, I feel confident for now. I’m not struggling to eat, I find myself having more energy than ever and generally, the cycles are manageable. All of that cannot hurt me, no matter what the scan results reveal.
I’ve noticed that I have started to really mix the ‘lifestyle’ type updates into the blog posts no matter the topic I am talking about. I’m calling this my USP for now, but perhaps I will try and separate them out more. Hope you all have a good Friday! This song came on my playlist on my drive home from The Christie, and it gave me some great vibes. Hopefully, you get some from it too.