The Road to Recovery
Sometimes I wonder if purgatory is a real place. I sit and ponder over what it could be. Perhaps it’s a play area, but all of the slides are covered in hot tar that never cools down. Maybe it’s your favourite clothing store, but you don’t have any money to purchase anything, and it all looks perfect on you when you try it on. Or perhaps it is a corridor with pictures of everyone you’ve ever met hanging on the walls, but no actual humans to interact with; you spend all of your time trying to find the pictures of the ones you actually cared about, walking the endless hall and trying to remember where they’re located. My number one theory, though, is that it is a hospital waiting area where everyone seems to be seen before you. I think I may have gone there today.
The idea occurred to me today as I sat waiting at The Christie. My bloods appointment was set for 14:15, and my oncology appointment for 15:20. It is rare to have a face to face with your oncology team, and I wasn’t sure what this one was about. I knew it was probably a routine meeting, with my chemotherapy coming to an end. It didn’t stop me from pondering over it. A clinical trial that they want to put me forward for? Maybe my last blood test showed that my cancer has gone and the tumour markers are at 0 – the first case ever where the chemotherapy has completely killed the tumour. Maybe it’s spread… No, surely not. It’s probably just to tell me the potential next steps, which I think I already know. Do I know them? I probably misunderstood them but think I know them. Maybe I do need a meeting with the oncology team; it’s probably good that I’m meeting them then, I’m clearly confused.
I signed in at about 14:10. It wasn’t a receptionist I recognised. As I stated my name, date of birth and address (a standard protocol that you get used to), she looked panicked and asked me to slow down. “Can you tell that I don’t work the desk much?” She said as she frantically looked around the desk. It made me laugh and I told her not to worry. The other receptionist, the one I know well, reassured her and told her to calm down, then winked at me. I repeated the details at her request and she informed me that I was signed in. After thanking her, I awkwardly remained standing in front of her. “I’m so sorry, I’m not trying to test you, but could you also confirm if my treatment time is 9:30 on Saturday?” She rolled her eyes and smiled – “I’ll do my best.” Her best worked and she confirmed it was. I wanted to confirm as it is usually at 8:30. The detail I left out was that I’d lost my appointment card for the second time in 3 weeks, a feat I’m not proud of. My first one lasted me 4 months. I seem to be determined to challenge the hospital’s appointment card budget since then.
The waiting began. I quite like waiting at the hospital. Sometimes I treat myself by not listening to any music and observing the world around me. It’s quite soothing to sit and listen to random conversations. The next thing I know, I’m jolting myself awake with my head propped up by my palm. Apparently, eavesdropping is too soothing. I wouldn’t make a good spy. At least the seats in the waiting area have armrests – I’ve been to hospitals that have horrible little plastic chairs with nothing to fall asleep on. They’re actually quite comfortable at The Christie. I checked the time – only 30 minutes had passed. What to do next?
Anna is working down in London this week so my mum came with me. Due to covid rules, no one has been allowed to attend the hospital with me throughout the time I’ve been receiving treatment. An exception to the rule is that you are allowed to be accompanied by one person when you have face to face appointments. You are actually encouraged to bring someone with you to help support you, and so you can both process the things being said. It is useful as putting the onus on the individual with cancer can be risky business. As a patient, staying focused isn’t always easy as an oncologist sits informing you about this medical procedure that will do that to your tumour and potentially leave you with this and that problem. Sometimes you sit nodding and smiling, thinking about how much you wish the tumour would just fuck the fuck off forever. That doesn’t do you much good, though, does it? Unless the wish works, but it probably won’t.
To my surprise, the hospital seem to have caught up with the rest of the country and relaxed the rules. There is no longer a desk as you walk in, surveying the people who are trying to gain entry to the hospital. It didn’t occur to me until this moment, as I tried to stay awake in the waiting room and pondered what I could do to keep myself conscious. “Oh wait, there’s no one restricting entry to the hospital anymore. I’ll ask my mum to come and join me here!” It was a true BINGO! moment. I’m sure a lightbulb appeared above my head for a second; I hope it didn’t disturb anyone around me in the waiting area.
My mum had been sitting in a cafe across the road from the hospital. She was having a coffee with our friend Julie, the daughter of the infamous Nigel, the 75-year-old pancreatic cancer slayer. He is a mainstay in this blog and it is a mandatory requirement that I bring him up at least once in each five posts. His daughter ain’t bad too. She got me the below card today to celebrate the last chemotherapy session on Saturday. Their family are always doing thoughtful things for us and I wouldn’t have found them without the blog. It is one of its greatest achievements!
Julie and mum made their way over and appeared in the waiting room a few minutes later. We went to the M&S cafe to wait for my name to appear on the screen. They have screens in that area too but I usually don’t wait there as I have no one to drink a coffee with, so it feels a bit pointless. We sat chatting and having fun. I ate a few oranges and drank a coffee. Still, no name appeared. I was keeping busy, though, so it didn’t matter.
It only started to matter when I noticed a group of the blood nurses walk past in their pedestrian clothes and with their personal bags. “That’s strange,” I thought to myself. It was 15:40 now – over an hour past my planned blood time and 20 minutes past my oncology appointment time. I’d also noticed that no one was being called into the Bloods Offie on the screen anymore. All of the appointments were to the oncology department or The Chemotherapy Ward. “I’m going to ask at the desk and see if everything is Ok.” My mum and Julie encouraged me to do so, and off I went.
No one was waiting at the desk this time, and one of the receptionists was packing away her things. I approached the other one, a different woman from earlier, but still someone I didn’t recognise. “My blood appointment was meant to be at 14:15 but I still haven’t been called. I’m pretty sure I just saw a cohort of the blood nurses leaving. Could you check how much longer it will be?” The receptionist looked concerned. “They all go home at quarter to four. I’m not sure if any of them are still in the office.” She rang through. Luckily, one nurse was still there. The receptionist hung up the phone and started focusing on the computer. “Oh, I’m so sorry, Daniel. You weren’t checked in properly. They didn’t know you were here. Your oncology team are at least an hour behind schedule anyway so it’ll be fine,” she told me to go through to the bloods office.
The nurse was really nice. We chatted about my tattoos and, to my surprise, she guessed what the ’42’ was in reference to on my wrist (it’s a reference to Hitchhikers Guide to the Galaxy, in case you’re wondering). She also laughed at my ‘Are we compelled?’ tattoo. It is on my right arm, right below the crease above the elbow…the exact spot where these blood-suckers extract my blood from every time. “You’d think I got it after I started treatment to stick it to you guys, wouldn’t you?” She laughed. “You aren’t compelled to show up, just don’t expect to beat cancer if you don’t!” It was a good point. The blood nurses won this round, even if it does pain me to say it.
I made my way back to the cafe, cotton bud attached to my arm and a smile on my face. It’s always nice to get the blood test out of the way for another cycle. This time there isn’t another cycle… even better! Julie left us at around 17:00. We thought it couldn’t be much longer before we were seen. Mum and I decided to move to the waiting area as they often call your name before it appears on the screen when you have face to face appointments. They finally called us at about 17:45. I’d figured this trick out before, though. They call you into the consultation room to take your weight and blood pressure, then leave you there to wait longer. Tricksie, but not tricksie enough. There’s no swindling me, dear Christie hospital. When the nurse asked me if I wanted a cup of tea, I knew we were in it for the long haul. Good job I like waiting; I’m preparing for purgatory after all.
We actually didn’t have to wait very long for the oncologist to see us. Probably another 20 minutes or so. That’s the easy mode of waiting – I wait 20 minutes for things all the time. Sometimes I wait even longer. Although we didn’t learn anything new in the meeting, it was good to get some face to face time with the oncologist. You don’t get time with them very often, so it is nice to ask some questions and discuss how things are going with them. He reassured me that my case is almost definitely going to be passed over to the surgeons, but then they will have to make a decision as to whether the whole tumour can be removed (best-case scenario), or if Nano-knife will need to be used to attempt to remove the tumour instead (second best-case scenario which means that the tumour is still too close to a major artery to remove in surgery). Nano-knife is a procedure where they use two electrically charged needles to shock the tumour, hopefully killing the cells. I didn’t actually realise that nano-knife was INSTEAD of surgery – I thought it was a means of getting to surgery by killing the tumour cells near the artery. A quick Google search tells you that it can be used for either method, but that there are few recorded cases of it being used as a pre-curser for surgery. Fantastic – another opportunity to be an outlier. Bring it on.
The next steps are: do the final session of chemotherapy on Saturday, attend the CT scan on Tuesday, and then get the results of the scan two weeks later. Apparently, I’ll have a few weeks of recovery no matter what is decided as the appropriate next step. I can’t wait to be 3, 4, 5 weeks away from chemotherapy. I’m really intrigued to see how much better I feel the further away from a treatment day I get, and if I’ll see a big difference in things like my energy levels. It also feels like I can confidently make plans for the first time in a while, even if only for a month or so. It’s good to feel like I have achieved something, and Julie’s thoughtful card is what put that feeling in my brain. I’ve made it to the end of chemotherapy, and it’s gone pretty well overall.
Life is good right now. Let’s hope the scan results get me one step closer to being one of the few who actually survive this bastard cancer. And if I don’t and I end up in purgatory, I’ll be well-read in the art of waiting. Even whilst everyone around me has their name called out. Give me a coffee and an orange and I can wait forever. I wasn’t even signed in, anyway; I do this for fun.