Thursday 16 March, 2035
I meet Lewis in his house in Hackney, London. Upon meeting him, it's clear that living with cancer has been a difficult strain on him, and has brought up a lot of issues about his life and what he’s focused on. He had children in his late 30s into early 40s, and has spent the last 13 years focused on his young children, juggling work, relationships and everything else. He worked in offices in London for most of his career (apart from those experimental hybrid years that we all went through), but grew up in the countryside. He put all his attention on his family, because he wanted to, but figured he’d have more time later in life to do the things he really enjoyed. Upon having to give up his work identity due to illness, he has realised how much he has ignored the things that used to bring him joy, namely his hobbies: he used to love going fishing. He would spend hours by the water, soaking up the sun, sitting amongst the grasses, moving slowly and reading the water. He knew it felt a bit quaint, but as things have been changing in the environment, it made him deeply happy. His illness has brought his fishing into sharp relief: he wants to be in nature, on the water, by the river. It is clear this is what gives him a lot of pleasure and meaning, so his inability to do so brings him some suffering. But it also gives me a locus for my work with him, alongside helping him with these last transitions, I hope I can help him reclaim a bit of himself through the things he loves.
His cancer is causing him a lot of pain, and is slowly increasing as the cancer spreads to his bones. It is a physical pain that is made worse by the fact he used to be quite active, and is finding himself slowly going immobile. As a result, and given his slightly private personality, he finds it too difficult to talk about his illness.
His issues beyond his medical care - how he experiences his illness, the challenges of adapting to palliative care, coping with a limited timeline and what to focus on - are not really being treated by his palliative care team. They do their best but time is always limited. Since the National Health Insurance Act came into effect, NHS nurses - especially in specialist areas like palliative care - are getting harder to come by. The explosion in private nursing means people are paying for what used to be standard care.
Saturday 20 March, 2035
It’s hard to tell if this is the reason I am involved, or rather - as they tell me - the fact I am a man in my late 40s who might understand Lewis better than most, means they have invited me to accompany him in the last few months to help try and find a way through for him. As a Registered End-of-Life Doula, I want to work with him and his family as I feel drawn to help a man who needs to find some resolution given his prognosis at such an early age. If the medical team can manage his symptoms, I’d like to be able to care for his more psychological and emotional needs, and help him find some meaning.
He was previously always quite healthy and an outdoorsy type. So on one level I suspect he feels it is unfair for him to get ill like this. I have to infer a lot because he is quite tight-lipped about how he feels, at least at first. He is now more or less house-bound, whereas he was used to being outdoors, running amok with the kids.
This comes out as frustration when I talk to him about how he is, on my initial visits. On the one hand, he is not wanting to discuss his illness, but he is not really expressing any emotions about it either. This emotional discomfort mirrors his physical discomfort.
Tuesday 3 May, 2035
In this period of his last 6 months, I’ve been visiting about once a month as discussed and agreed by Lewis. During this time, he increasingly needs to have his pain controlled with medications. For Lewis, this is the worst part of being ill: the background pain and waves of specific pain at various times. But not having enough time to do the things he loves comes a close second. This is where I feel my work is.
He has other favourite hobbies and things he likes to do - he can very easily talk about vinyl collection - but he keeps coming back to his time outdoors. On one visit, I suggest Lewis share his pastime with his kids: to share his fishing experiences, perhaps start to give them bits of his equipment as a way to vicariously do it again. Teach them the basics and see if they’d like to go fishing.
I privately do this as a subtle way to help him find a way through his illness and perhaps even begin to accept his situation.
Lewis is open to this idea however, and gets quite excited in his way, about doing this with his kids. Given his mobility issues, he’ll really struggle to do anything in person, so he accepts the idea of his kids going fishing on his behalf and ‘reporting back’ on their experience.
Saturday 20 May 2035
Today I stay with Lewis while his wife and 2 children go on an afternoon trip to the river. I bring a specialist drone I borrowed off a friend and I ask them to call us when they are settled and into it. At our end, I bring my volumetric projector to bring the river into the living room for Lewis.
They do call us, and they are learning the ropes. With the drone capturing the riverside in 360˚ video, we are transported there through the volumetric projector. It’s like being there. The distance melts away between us: Lewis gives them pointers, small bits of techniques. I can see it brings him a lot of quiet joy. It feels like this experience is making his illness and end-of-life experience a little bit less about him. To watch his children enjoying life, with him at the sidelines has a bittersweet but de-centering effect.
But it does cause some clouds to emerge, about how he feels about being ill: he recognises out loud for the first time they he will not be around to watch his 2 boys grow up. He knows he wants to impart some parental/fatherly advice, but also laments needing to do so.
Thursday 2 June 2035
He doesn’t like to talk about what will happen after he dies, and he doesn’t provide much indication of having spiritual beliefs, but the experience with his sons and fishing helps me frame some opening queries about being a part of something larger than ourselves. This resonates with him. I help create a bit of space for him to explore this, and thankfully he does. I listen deeply as he starts to piece things together.
He talks about the river as always moving, never staying still. Always in motion. How things can pass us by, but we’re always part of a bigger thing. The river always leads to an ocean, and although it can be scary to be whipped away by the flow of the river, in the end it can take us to somewhere calming. It’s a bit of a hamfisted metaphor, but he clearly was onto something. It feels like he is bouncing between feelings of loss and coping with changes. This feels healthy. We sit in silence for a while, I can tell he is thinking about it as his wife and sons travel back.
After a while, he comes back to this idea of something larger than us. It’s sparked something in him, memories of his misspent youth in clubs, dancing and taking ecstasy. I wait a moment to hear what he has to say, take in his memories and see the glint in his eye.
I point out that given his current prognosis, he would be automatically qualified for a therapist to do some psychedelic therapy as part of his treatment. The NHS is still good for a lot of things. It would give him a chance to both re-live a bit of those youthful feelings and would be clinically appropriate: his search for meaning in my opinion is being hindered by some protective barriers he’s constructed around himself.
He considers it for a moment but felt like it would open up too much, too soon. I agree that he shouldn’t do anything he doesn’t feel like: it’s a treatment like anything else.
Monday 15 July 2035
Time passes, the pain gets too much at times. Given our opening earlier in June, and making some space for reflection, when I visit, I feel it's about finding a gap to talk about what happens if it gets too much for him at home, to gently discuss what the options are.
As it happens, the palliative care team notices this too, and asks Lewis’ wife if she would like to be trained to deliver medications-as-needed, if Lewis needs it. She is wary but feels everything is manageable at this point. I help make some space to discuss this once the team goes, so they can really open up and weigh up the pros and cons.
Although there are many smaller hospices dedicated to specific groups of people nowadays like younger people with life-limiting conditions or Muslim communities, he wants to stay at home, wants people and his things around him. Even in his late 40’s, he feels too young for a hospice. His wife agrees. I check in with her about what she would need to do to ensure this: she is a bit scared but adamant about helping him stay at home.
Sunday 10 August 2035
Over time, he gets to the 6 month mark and is still around, but finding it harder to cope. Getting to this milestone is difficult for him: he doesn’t know what to do, what to expect. He hasn’t been engaging with what his trajectory may look like, so it felt quite uncertain for him. I reflect on the fact that regardless of the advances in science and research in the last few years following successful moonshot programmes from the US and EU, the UK feels far behind. This feeling of not getting access to more treatments makes things difficult for Lewis.
His avoidance has given him some respite to try and focus on the present, I haven’t expressed any views on whether it is better to try and talk and face things. There is some value in being able to not get bogged down in living with reality all the time, but this change has derailed him slightly. It must be hard to be told you have a fixed amount of life left, just to find out there was some behind the sofa, so to speak. I admit I struggle with this experience, and made the effort to journal my feelings and experiences, and I check-in in with other doula’s who have gone through this experience.
Part 2 coming soon…