As I promised in Monday’s post, I am re-blogging the two entries from Journal of the Nightmare Patient which I had previously shared under my ‘nom de plume’:
After my last entry, I gathered my possessions together. I made sure that I was ready to leave as soon as Nanna and Grandad arrived. I was determined that I would not stay in this hospital any longer. I don’t want to stay in a hospital where the staff have no respect for me as a person, and where I can’t be ill in peace. I don’t want to be somewhere if no one listens to my voice.
While Nanna spoke with the ward manager, and tried to reason with me, Grandad stayed by my side. I’ve cried hard today. I was quite distressed this morning. I couldn’t bear to be here for moment longer. Grandad took my bags, and took me to the car.
The ward manager tried to justify my experience during the night with the fact that I’ve been transferred to this ward on a weekend, and late in the evening. I’m sorry, but it isn’t an excuse for a shitty night.
Grandad drove me back to The Town Hospital. We went to A&E and I was taken to a side room to protect me from the other patients. The nurses learnt about my recent medical history and ensured that my IV antibiotics were administered in a timely fashion, and called for Professor Bertie, who was on call today, to come and see me.
Professor Bertie wasn’t happy that I had discharged myself from The City Hospital. Both he and Nanna pleaded with me to return. It was horrible.
Professor Bertie told me that without treatment I could be dead within six months. He was blunt. He was cold in delivering the icy truth. I suppose that he had to be.
I really didn’t care.
I really don’t care.
I didn’t want to return back to this ward. Instead, I spoke about biodegradable coffins, and cheap funeral arrangements. Nanna became upset. Grandad was searching for alternative solution; he asked about private care, but Professor Bertie says that isn’t an option.
I focused on my baby half-brother who was lying in Nanna’s arms. He is only a month old. If I were to refuse to come back to The City Hospital, by the time I die, he’ll be about six months old. He’ll have no memory of me. What about all of my other siblings? What about Nanna and Grandad? What about Dad? What about all the people that I’ll be leaving behind with only a memory that I once existed?
Facts and figures swirled in my head. Out of all the people in our country, only up to 150 of them are diagnosed with aplastic anaemia per year. I’m unlucky to be one of them. I’m in the minority group, yet, I’m never lucky enough to be in the minority group of lottery winners! No matter how the odds are stacked, I am the loser. With the treatment that I’ve been sent away to receive, there is a 70% chance that it might work – but the way that my luck is going, I am likely to be in the 30% group of it not working.
The thought that I’ll be leaving behind a memory of having once existed, returned to me. Do I want that memory to be one that I’ve fought against, or one that I’ve cowardly given into because I don’t want to stay in a place where I’m treated in a way that I don’t like? Do I want that memory to be one that the people who love me can reflect upon with pride in how I’ve fought, or anger in how I’ve given up at the first hurdle? Do I want the baby to know me or have to hear about me every now and again when I’m occasionally remembered?
They made it sound like a special favour when they told me that the bed at The City Hospital was being held for me. I had to make a decision, and I had to make it quickly. I feel emotionally blackmailed by the emotions in the room earlier. I feel cornered because The City Hospital is the only place where I can receive the treatment that I need. It feels that the only person watching my back is Grandad. Maybe he and Nanna are playing “good cop, bad cop”?
Reluctantly, I’ve come back to The City Hospital. I cried for the entire journey which disappeared so quickly. Unless I want to succumb to this disease without a fight, I have no other choice. I know that I’m not in control; this isn’t a decision that I’ve chosen to make but one which I feel I’ve been forced to make.
I’ve gone to bed without any dinner. The food doesn’t appeal to me, and I’m exhausted. I haven’t eaten anything today, but given that I hardly eat most days, it doesn’t bother me that much. The choice of food that I saw on my way to my isolation room didn’t appeal to me; it either looked very dry, or looked very watery! Thankfully Nanna and Grandad are “allowed” to bring me ready meals which can be cooked in a microwave while I’m a patient here.
Do I really need permission to eat food that I like while I’m in hospital?! Do I really need permission to have anything brought in from home??? This isn’t a bloody prison!!!!!