Entry 14 from Journal of a Nightmare Patient
I find the doctors ward rounds rather intimidating. There’s an entire gang of them! They all turn up at my bedside. I feel like an object in a museum, or an animal in a zoo, rather than a person. During their ward rounds they’ve been focusing their attention on Nanna. Have they forgotten that I’m sitting in the bed? It makes me angry, but I know that I’ve brought this on myself because I haven’t exactly been engaging with the doctors; I’ve barely been responsive to them since I was admitted into the hospital. I’ve not made myself involved in my care. I’ve just been a passenger.
I’ve met a palliative care nurse called Isabelle. She has a wealth of knowledge and has so many tricks up her sleeve to remedy my discomfort that’s being caused by the ulcers in my mouth, and my sore throat. She’s armed me with a few coping strategies, too. Some are really helpful, even if I wasn’t sick!
Isabelle has helped me find my voice. I know that Dr Augustus, nor any of the doctors, can answer whether I’ll live or die, but I’ve thought of other questions that I’d like to ask:
- What’s happening to me?
- What’s the plan?
- What are my treatment options?
- What will these treatments involve?
Isabelle helped me to pose my questions and during the last ward round Isabelle made the focus shift to the patient in the bed (me). It gave me the chance to ask my questions. I feel that I’ve made the first step in involving myself in my care. I feel a bit more in control.
What’s happening to me? My bone marrow has failed so I’m not making any blood, making me susceptible to infections, bleeds and anaemia.
What’s the plan? To keep me topped up with platelets and blood (supportive therapy) and to refer me to Professor Charles at The City Hospital.
What are my treatment options? There are several:
- We must wait to see if Shit Face is a good enough match. He’s had his blood tests and they’re waiting for his results.
- ATG to try and divert my immune system away from my bone marrow.
- If ATG doesn’t work, I could have a second course of ATG or they might look to the registers for a bone marrow match.
- No treatment, and I die.
What will these treatments involve? I’ll have to go to The City Hospital as The Town Hospital can’t provide me with these treatments. I might get serum sickness from the ATG. I might get graft versus host disease from the bone marrow transplant. I might get 100% better. I might become 100% dead…