Accepting Terminal Illness

How do you truly accept that you are going to die?

When I was first given the diagnosis, in what feels like the start of a second life, I found it almost impossible to concentrate on anything other than cancer and death. It felt like I was having an existential crisis. I was getting by minute by minute, hour by hour, and my mind felt like it was melting as I tried to contemplate the unfathomable. The bleak statistics were constantly going around my head. Less than 10% of people in my position live more than 5 years. The most (and only really proven) effective treatment has about a 30% chance of being effective at keeping the disease stable. Even with it, median life span is about 18 months. With everything else going on - a constant stream of hospital appointments, telling people what was happening, and dealing with the fallout in other parts of my life - it was a lot to get my head around. But I was treating it like a death sentence, and started reading what I could about terminal illness and how to deal with it. Trying to tackle the meaning of life and death within a two week period by reading book after book on philosophy probably wasn’t the best approach, and I think I scared quite a few people around me with my morbid rants as I prepared for the worst. But when treatment started, and things started to go far better than expected, it was easy to forget the grim reality of the situation. I parked the idea of dying at the back of my mind, and it only reared its ugly head every now and then. It was something to address when the time came. 

It’s almost two years later and I’m still finding it hard to reconcile the fact that at some point soon I am almost certainly going to die. I understand it logically, but emotionally it just doesn’t make sense. How can I feel so healthy yet be so unwell? I feel better now than when I was diagnosed and if I don’t overthink the occasional cough, I have no symptoms at all. This does not line up with my idea of dying. When I’m shown the images from a PET scan - a huge tumour where my right kidney used to be as well as my lungs lit up like fireworks -  and add to that the high rate of progression of the disease and fact I’m not getting treatment, I can’t deny what is going on in my body. But that doesn’t make it easier to truly accept, which means it is also quite easy to ignore. 

Having read a fair amount about what might constitute a so-called ‘good death’, as well as being not-so-gently pushed by some of my friends, I think it’s important that I (and most people) think about what this idea means now rather than in the final days when you haven't got the energy or physical ability to do or say what you want. Luckily, covid is giving me plenty of time to reflect on this and think about how to address this. I hope this post acts as the first step, and will lead to more conversations about it. . 

What even is a good death? Is there a correct way to approach it? The main way I’m trying to force myself to is to ask myself ‘if I knew that I’m going to die tomorrow, what will I want and what will I regret?’ This actually has a simple answer - any long term aspirations, family plans, career goals, travel ideas become irrelevant. All I really, deeply want is for the people that I love and care about to know how much they mean to me, and the impact they have had on my life. For me, a good death is one where I am surrounded by people I love, where the atmosphere isn’t depression. Everything important that I want to say to people has been said, and vice versa, which allows us just to enjoy each other's company and be in the moment. I don’t think that is too unrealistic. Extending that out, due to the likelihood that I won’t die tomorrow, it would be great if the next weeks and months are in similar circumstances. No giant elephant in the room (or blocking the camera during video calls). Just a pure enjoyment of living and everything it entails. 

Whilst not unrealistic, it will take a huge amount of emotional effort on my part. I have had plenty of opportunity to speak to the people close to me over the last two years and I’m clearly not very good at it. Although I have been so appreciative of the huge number of people who have offered to chat/listen, I haven’t really taken anyone up on the offer. This is partially due to the mañana attitude that is easy to have when something doesn’t seem imminent, and the fact that the majority of the time I am pretty happy and want to stay happy rather than focusing on the more negative thoughts that are going around my head. When I do talk I focus on the more pragmatic (how is treatment going, what choices do I have etc) or the physical side (how am I feeling, what would help) of what is happening. Perhaps others are just following my lead but I think most people are doing the same. I guess it is risky to ruin a perfectly good conversation by bringing up my impending deterioration into nothingness. 

It is also because of my natural habit of thinking I can deal with things myself and not wanting to burden people. Seeing as what I’m currently going through is up there with the hardest things anyone has to deal with, I need to allow myself to be vulnerable and accept people’s help on this, if they are truly willing. The emotional side is clearly so much harder, definitely for me and I think for most people. Death, and dying, is a taboo and unwanted subject. I definitely won’t want to talk about it in every conversation I have, but I think ideally over time it will just become part of normal conversation, rather than it having to be a separate one that makes people anxious. I’m going to force myself out of my comfort zone for that, and hope that whoever I talk to is prepared to do the same.