[05/09/2019]

Emily is quietly dying. My experience tells me that it is not the kind of dying you recover from. Yellow and puffy, she is exhausted from just staying alive. She lies in her bed at the entrance to the last bay (where the most stable/independent patients are usually put) and I see her every time I pass by: Lying flat with her dark hair spread in waves across her shoulders, its red colouring contrasting with her sallow skin. At 35 she is just a couple of years older than me and the calmness with which she faces both the struggle of her present circumstances and the loss of her future speaks volumes about her overall character. She is unquestionably one of the most kind and considerate people I have ever had the privilege to look after. Always patient, always polite, staff talk about her with a fond sadness that reflects the fact we all know she won’t be with us much longer, even if it is not openly discussed.

[08/09/2019]

Emily is catheterised now. They had wondered if she was retaining urine, but she wasn’t producing any. Her renal system has started shutting down. There is lots of discussion about how much of her deterioration was due to disease progression, and how much was due to her treatment. After administrating what was supposed to be the first bag in a final round of chemo, Emily rapidly deteriorated. So much so that they decided to not continue. It was never going to be curative, but if the cancer had responded, either slowed or stopped growing, it could have given her more time. The chemo nurse tells me that she regrets administering that final dose, “but who wants to tell a 35-year-old that she’s no longer appropriate for treatment”.

[10/09/2019]

Emily has been moved, brought to a bay in the middle of the ward so she is closer to the nurses’ station. She lies awkwardly, never comfortable. Her limbs heavy with fluid, skin stretched taught. At this point care staff are assisting with all her personal care needs as she is just too weak to do much of anything for herself anymore. Helping her reposition in bed, I am shocked to see the blackened skin of her sacrum when she rolls over. Necrotic damage to deeper layers of skin a clear indicator that her body is breaking down, unable to heal. The cancer specialist nurse has been discussing the reality of Emily’s prognosis with her. She seems receptive to this – very aware that her body is failing her and too tired to fight it. It is documented that she confirmed that she understood that nothing more that could be done to treat her cancer, that priorities now are keeping her comfortable and meeting her wishes of being able to spend time at home before going to her preferred place of death which is the hospice.

[11/09/2019]

Emily seemed brighter this morning – the blood transfusion overnight must’ve helped. After being practically bed bound, she was up and walking when we arrived on shift. Making the most of this, I offered her a shower. I made sure to take my time, knowing that there is no guarantee she will be able to get back in there again. I massage my fingers into her scalp, building up a lather of shampoo as hot water rains down. I comb coconut conditioner through her hair and, once she’s dry, cover her in body butter. She talks to me throughout it, telling me about her family and the pets she had growing up. Having exerted herself from this, she stays in bed for most of the rest of the day, getting increasingly uncomfortable as the evening drew on.

This is hard to deal with. Whilst acute pain is horrible, and its management complicated, employing medication for its relief is well established and staff are usually in agreement about appropriate usage. The chemical management of discomfort, restlessness, and agitation on the other hand, is less readily employed as its sedating effects make it seem an extreme measure. Emily has made it clear that she would rather be alert and uncomfortable than so doped up that she cannot be awake and experiencing the world for the remaining time she has in it. We are doing all we can to keep her comfortable – endlessly adjusting pillows, limbs, bedding, heat pads, the electric bed, and taking blankets off and on. But nothing seems to bring any relief for more than a very short amount of time.

[13/09/2019]

Emily asked for me today. She asked yesterday too, but it was my day off and she said she would wait until I am back to have another shower. The team accommodates, working out patient allocation to ensure I have adequate time with her. Its only two days since we last did this, but this time she struggles every step of the way.  I must help her with everything – sitting up, moving to the edge of the bed, putting on her slippers, standing up – and she is exhausted by the time we get to the bathroom. I carry on but am inwardly worried we won’t be able to make it back without using a hoist. She doesn’t talk much this time. Just sits slumped in a plastic chair, her eyes closed, as hot water runs over her hair and puffy, swollen body. I gently pass the soapy flannel across her skin which, along with the whites of her eyes, is now an almost illuminous yellow and stretched so tight that I’m scared it will split if I’m too rough. Her long, thick, dark red hair, still so soft, seems to be the only part of her left unchanged from this disease.

The complexity of her care needs means that her original wish of spending time at home is no longer feasible and we are now organising her discharge to hospice. I am sorry that going home isn’t possible but glad that she is leaving the hospital for somewhere more suited to what she needs, where she can have her own room and her parents can stay. “They can even bring the dog”, she tells me smiling.

[14/09/2019]

Emily left us today. A hospice bed became available overnight and she was taken there by ambulance this afternoon. Wrapped in blankets and strapped into a trolley, I walk with her as she is wheeled across the hospital forecourt. For the last 5 weeks that she has been with us, she has not been outside, has not been able to open a window, has not felt fresh air on her face. Its grey and drizzly, but she turns her face up into the rain, shrugging her arms free and holding them up to the sky, smiling and blinking in the light.