May 10th – The Day Before

There is nothing more dangerous in life than going into your appointment to get scan results feeling confident. Nothing tempts fate more than the cancer patient feeling happy and boasting that it is “just a routine scan” and that “everything will be fine”. Well, that’s exactly what I’ve been doing for the past week. I’m sure fate is prowling in the grass, ready to pounce. Let’s hope I’m just being paranoid.

Although I didn’t believe it when people said it to me, things have been getting better again recently. I’m learning to take things slower, make more time for myself, and dial back a bit on my expectations of myself. Whereas I used to be a bundle of energy, constantly running, socialising and enjoying myself, my ability to do all of that has diminished significantly. Gone are my days of Jack Kerouac style indulgence, impulsively following whatever vice appealed best to my insensibility that day. Now, I can’t even eat pizza without having a crisis of nerves, because it causes my blood sugar to go insane and generally makes me feel terrible. I’ve almost completely given up drinking, don’t really run or exercise, and enjoy finding recipes containing chickpeas, because I’ve decided that they’re the key to being healthy, and are preventing any more tumours from growing inside my body (according to me – no medical professional has ever hinted that this is true).

Anna and I met some friends at the pub during the afternoon on Saturday. We walked over with Lucy and arrived at about 14:15. It was a really nice way to spend the afternoon, but by 17:00 I was starting to feel a little beat down. Suddenly, I found myself struggling to stay focused on the conversation. I opted to leave early, taking Lucy with me and walking the 40 minutes back home with her. It rained for most of the walk, and Lucy was dragging her heels. She gets particularly antsy when it is raining, but doesn’t have the intelligence to realise that if she walked faster, she would actually get home quicker. Of course, there are a lot of factors that need to be considered to understand such a thing – she would need to know that we were indeed heading home, that home is where we live, that stopping under a tiny bit of tree cover isn’t a good substitute for being in an actual house (she cowers under anything that offers even the smallest reprieve from the rain, slowing us down even more), and that I also don’t want to be in the rain. I’m certain she thinks I love rain, judging by the wide eyed stare she gives when we go walking in it, as she plants her feet and refuses to move. I assume that is her way of saying something like “why do you always make me do this you horrible, awful, reprehensible arsehole.”

I felt a little bad leaving the pub early, but was glad that the others stayed to enjoy a few more drinks together. When I got home, I lay on the sofa for a while, feeling a little bit sick and struggling with nausea, a common issue I have. Once that passed, I spent a few hours writing and reading. It was nice; I actually couldn’t think of a better way to spend a Saturday. That acknowledgement that I needed to go felt good. I was debating whether to stick it out in my head, but I could feel myself starting to struggle. Instead of pushing through, I accepted defeat. It was the right decision. Perhaps referring to it as a ‘defeat’ is a little negative, but I need to be a little self-deprecating when complimenting myself.

What isn’t so easy to deal with is the feeling of alienation that does still set in during these situations. It can be hard to say no to things when you’re 30, and everyone around you are still enjoying themselves in a way that you struggle to. There’s a feeling that you’re being boring – wasting your “good” years. But a lot of these indulgences just aren’t compatible with me anymore. I can’t go for lavish meals if they’re really big or unhealthy without feeling very ill. I don’t want to drink 10 pints at the pub on a Friday night; I don’t even want to drink 1. Even going on particularly long walks or having extended periods in the city results in me feeling totally wiped out.

A few days ago, I left my house to go to Stratford, as my laptop had stopped working and I needed to get it looked at. I walked the 6 or so minutes to the station, then sat on the platform with my head in my hands, trying to stop myself throwing up. I had started to feel terrible on the walk. I watched a train pull into the station but couldn’t bring myself to board it. I was trying to drink a lot of water, seeing if it made things any better. It didn’t work. Eventually, I just walked home and a familiar situation ensued – me, sat on my sofa, eyes closed, waiting for the sickness to pass. It did, but it took a good hour. I didn’t leave the house again that day. I sat and read, though, and that was nice. My sister Becky visited too, and having her around made me feel better.

I am concerned that I’m developing a defeatist attitude, where I write something off too easily, not giving myself the opportunity to enjoy it. My reaction to a plan tends to be: think of 5 reasons why I shouldn’t do it, decide to not do it, done. I don’t entertain any of the other reasons why I should actually do it. I don’t want to become like that in life. That is why the scans are so nerve racking – they’re a lingering threat to any progress that I’ve made; a potential validation that I was right to be concerned, that something is growing inside of me that wants to kill me, even if the tumour isn’t aware of it and isn’t doing it out of malice, and that I should just stay inside and do nothing. Let nature take its course.

But, I really do believe that this one will be ok. I’ve had scans fairly recently when I’ve had to go to A&E and they’ve all been clear. It will be interesting to hear whether the lymph nodes are still enlarged. My paranoia about my neck being swollen has actually mostly subsided, but the back of my neck does frequently hurt in the mornings. I have strange dreams but rarely remember them the next day. The only reason I know it has happened is that I feel uneasy as I lay there at 3:00am. Sometimes, I remember what it was that disturbed me so badly in the dream, but I forget it by morning. It seems to cause tension in my neck, and sometimes it takes a while to go. We’ll see how I fair tonight. My neck might be creaking during the scan results tomorrow!

May 11th – Results Day

We arrived at The Christie at 12:00 on the dot. The bloods appointment was at 12:15, and the scan results meeting was at 13:00. That means, by any reasonable estimate, bloods will be at 13:00 and the results meeting will be more like 15:00. Even those estimates may be optimistic. I made my way to the check in desk. They have a new framed piece of art behind it. It is a pink ribbon, often used to symbolise support of those suffering from breast cancer, with “Hope” written across it in bold black font. There are plenty of things I’m hopeful for today… I hope that the time goes quickly waiting in the hospital, I hope that the experience is less stressful than it usually is (it won’t be) and, most importantly, hope that my scan results are clear. The first 2 are very unlikely to happen, but I was trying to keep my faith in the 3rd one coming up good.

Hospitals are a weird place. They act as a void, sucking in patients and obliterating all concept of time and the outside world. When I read news of hospitals being bombed in the Ukraine war, I try to picture what that would be like in my head, but really struggle to imagine it. Hospitals feel clean of the outside world’s issues. When you’re inside them, you concentrate on the problem you’re there for, temporarily absolving yourself of any other worries. Though they are stressful places, and you don’t want to have to spend time in them, you form a relationship with the space, especially when you have to come to them often. When you’re there, you focus on getting better, on getting through that meeting or this scan, and that occupies your mind. When you leave, you return to whatever else you need to do. There couldn’t be a more daunting break in this relationship than a bomb landing on that very building, with patients inside of it. A building that exists with the primary purpose of offering people help and trying to extend human life, being blown to pieces by technology designed to engulf and kill. I’m sure it is common for hospitals to be bombed in war zones, whether by accident or by malice, but the concept of it is horrible to me.

Surprisingly, my name appeared on the appointment monitor at 12:30. Only 15 minutes later than planned. Perhaps that hope poster really works. The bloods room looked the same as it always did, but I didn’t recognise any of the nurses in there anymore. The nurse who was taking my blood was lovely – we spoke about holidays as she was about to go away, and she mentioned wanting to go to Mauritius, where my wife and I had our honeymoon. Blood nurses are good at distracting their subject. If they don’t, you remember that they’re about to stick a needle into your vein, and you can’t help but feel some animosity towards them. When they’re quickly nice to you, they disarm that defence, then they assault you with a needle, and a smile on their face.

I made my way back to the table where my mum, Anna and our friend Julie were waiting. Julie and I met in interesting circumstances. She saw a run that I uploaded onto Strava when I was raising money in support of Pancreatic Cancer UK, when I first started on chemotherapy. After realising that I was receiving treatment at The Christie and that I had Pancreatic Cancer, she contacted me by commenting on one of my runs. Her dad had been told that he could expect to live about 8 months after being diagnosed with it in his 70’s, but his treatment had been so successful that he had been offered surgery. The surgery went very well, and he’s still cancer free 3 years later. I’ve spoken about him on this blog quite a bit, but it’s been a while, so it’s worth mentioning again. It is amazing that this blog has provided opportunities like this, and meeting their family has made it worthwhile – they’ve been an incredible support. When they come to the hospital with us, they always make the time go much faster. It was only Julie today – her parents are enjoying some time in the sun overseas, so they weren’t around.

We chatted and ate, then, low and behold, my name came up on the appointment monitor again, at 13:30. Only 30 minutes later than planned. This is seriously unheard of. I started to feel suspicious, as if the only reason that this would be happening is because there is bad news. It is hard not to start being a little cynical in life after receiving a couple of bad hands. It feels like nothing happens for my benefit anymore – everything is plotting my downfall. I should probably drop this ‘woe is me’, teenager attitude, but it’s hard not to be cynical. I’ve been informed plenty of times that I am very unlucky to have had this cancer at my age, so I’ve got the memo. Life is out to get me.

After the standard procedures – measuring blood pressure, weight – Anna and I settled into our normal routine whilst waiting for the specialist in the office… we sat in silence. These meetings are always a nervy affair. It can be difficult to make jovial chat. The stress hangs heavy in the air. But, sure enough to the message of Hope which was becoming a theme throughout this visit, the specialist came in soon after, at around 14:00.

He quickly got to the point… “your scans look clear and show no obvious signs of cancer.” We both let out a sigh of relief. This oncologist seemed more approachable than others, for some reason. I felt a sudden urge to ask a lot of the questions that have built up these past few months.

I asked about the main risk factor – whether it is lymphoma, due to the swollen lymph nodes, or something else. It turns out that wherever it comes back, it is still classed as pancreatic cancer. Who knew? You can still have pancreatic cancer even when you have no pancreas. What a crazy world we live in. That means I have been pointlessly worrying about my neck a lot, which is good. Guess you can never be too careful. Necks are untrustworthy.

I also asked what symptoms I should be looking out for, to which he responded that nausea, sickness and tiredness are the main symptoms… things that I feel all of the time. Hm. That isn’t going to help the anxiety, but it is good to know that I’ve been taking these things seriously, and going to A&E when they’ve got particularly bad. So far, I haven’t had any terrible news as a result of going, but I guess it only takes one time where that isn’t the case for it to all go wrong. Though better not to think like that, if possible.

He also said that pancreatic cancer tends to come back very aggressively, and can advance quickly once it does. I was already aware of this from reading other stories online, but I try not to do this. Though, something positive, apparently the 5 year survival rate is between 10 and 20%, which is higher than I thought (even though it is still very low, of course). He did concede that I am very young for this cancer, and that the data is based on the average patient, which is different to me, but it is still hard to hear this type of information without starting to worry. It is especially difficult when I am a chronic overthinker.

Everything sounds positive. That is the headline. My scan cycle is changing to every 6 months now, which I assume is a positive thing. It does make me feel a little nervous, but they say that I can contact their team if anything is bothering me and we can discuss options. That makes me feel better. Now I have to get the port taken out of my chest, which is going to suck. The procedure to put it in was gross, and included them using a rod to tunnel underneath the skin to get the line in. Eugh. At least when they take it out, I assume they can just make an incision, then yank it out… Not that you want someone to yank anything out of your chest…

Tonight, I baked some cookies, made some tomato pasta, then took my dog out for a walk. The evening was warm, and it was nice to get out after being pent up in the hospital for 4 hours. Everything felt calm; I tried to soak it in, hoping to learn from it. It didn’t work, but I’m trying my best. Every time I sit in the office and talk to the specialist about my cancer, I get the same rhetoric – how hard this cancer is to survive, how complicated treating it is, how quickly it can all go wrong. It takes a while to decompress from it all. But I’m still here, and I’m feeling relatively good. I just need to keep adjusting the things in my life that require adjustment, and being as kind to myself as I can. Hopefully these 6 month scans become more of a formality, and I can boast about being in that 10 – 20% of survivers who surpass the 5 year survival mark. Hopefully.