Entry 14

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:

  1. 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.
  2. ATG to try and divert my immune system away from my bone marrow.
  3. 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.
  4. 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…

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Entry 4

Entry 4 from Journal of the Nightmare Patient:

Dr Augustus and his team (there are so many of them!) have visited me on the ward this afternoon. He shared with me the diagnoses that he’s considering: aggressive leukaemia or aplastic anaemia.

I’ve heard of leukaemia. I know that’s a serious disease even without the prefix of “aggressive”. I know that leukaemia is cancer. I hope it’s aplastic anaemia and not leukaemia. Aplastic anaemia doesn’t sound scary. Aplastic anaemia doesn’t sound life threatening. I can’t remember what Dr Augustus said about aplastic anaemia – I wasn’t ignoring him, I just wasn’t really listening.

Of all the questions I could have asked him, I could only think of one that I want the answer to! It forced its way to the forefront of my mind. It blocked out all other questions that I could (and maybe should) have been asked:

“Am I going to die?”

No matter how many different ways I worded the question, Dr Augustus gave me the same answer: “I don’t know”. I know that he doesn’t have a crystal ball. I know that he can’t look into the future. I know he can’t give me the answer that I so badly need. He doesn’t know himself whether I’ll live or die (hence “I don’t know”). He only has the facts as they are presented before him. He doesn’t know what’s going to happen. He doesn’t even have a final diagnosis for me; he’s only working on speculation. But, Dr Augustus’ refusal to answer with anything other than “I don’t know”, infuriates me. What kind of a doctor is he?! He must have some idea!!!!????

I’m now sat on my hospital bed, crying my eyes out like a pathetic child. The nurses have drawn the curtains around me to give me some privacy. Or have they closed the curtains so that I don’t scare the other patients?! I feel alone. I’m terrified.

What’s happening to me????

It isn’t fair. I’ve only come to the hospital for a routine operation. How has it lead to a life-threatening disease being diagnosed?????? Until last week I had been leading the life of a “normal” twenty-year-old. Now, my world is being tipped upside down.

[Link to the .com store]

Entry 42

As promised in Monday’s post, I am re-blogging to entries from Journal of the Nightmare Patient which I previously shared under my ‘nom de plume’. This is the second entry from my e-Book:

One infection clears up. The prospects of being discharged are promising. Then, another infection makes itself known.

The cycle keeps repeat itself, over and over again.

There’s no respite. None at all.

As soon as the doctors think that they are on top of things, something else comes along. We are constantly taking one step forward and several steps back.

I’m fighting a losing battle.

I’ve lost count of the number of central venous catheter’s or PICC lines I’ve had put in and removed as a precaution of being an infection source. Every time the doctors take one line out, some form of line goes back in a few days later before it has to come out because of an infection risk.

I feel alone. I don’t know whether I’ll live or die. I struggle to find anyone who understands what’s was going through my head. People are getting bored of me declining invitations to socialise. They’ve stopped inviting me out altogether now because my response are always the same: “no, I’m in hospital”. Most communication has stopped and they leave me alone as they carry on with their lives. But then there are friends, like Gazza, who I’ve neglected. Texting consumes effort and there isn’t much to text about. Phone calls are near impossible when my I feel so unwell and my signal is rubbish. Maintaining friendships has became difficult because I feel too tired to make the effort. But, I’m also looking after number one. I know I push  away the people who care about me because I’ve convinced myself that one day they’ll also get bored and forget about me. I don’t know how to get out of this horrible cycle.

I feel isolated. The cards of well wishes pile on the door mat from people who don’t usually give me the time of day. These well wishes are meaningless. Whenever I’m alone in this isolation room, I’m surrounded by these cards, but where are the visitors to keep me company? Despite offers of “if there’s anything I can do, let me know”, which seem to be steadily flowing in, very few have delivered on the “you could come and visit me” suggestion. The worst excuse for not visiting is “I don’t like hospitals”, which disheartens me. I don’t chose to be here. This isn’t a holiday for me.

I’m also worrying about my money… It’s an expensive luxury to be a patient. The sick pay has run out and I’m living on an incredibly tight budget.

Being a patient doesn’t stop the financial obligations. Being a patient doesn’t mean that everything suddenly becomes free.

When I’m in hospital, direct debits still have to be paid. While in hospital I have to pay to watch TV and access the Internet. I have to pay to read a newspaper. I still have to buy birthday cards and the toiletries that I need.

When out of hospital I have to pay my way. I can’t walk out of a supermarket with a basketful of shopping without paying. I can’t do activities which cost money for free because I’m sick and not working. It would be more economical if I had gone to prison – at least prisoners (apparently) earn money while serving their sentences so that they have some cash once they’ve served their time!

There’s also a battle for me to claim benefits while I’m sick because I can’t attend their appointments to prove that I’m sick. I don’t understand why it’s so difficult when there are so many people claiming a load of benefits, leading comfortable lives and even get a house chucked in for free if they need one! Benefits are supposedly available for those in need but I see that they’re more easily available for those who plan to never work and opt for the easiest way of life. I have to prove that I’m unable to work, and even then the benefit assessors haven’t accepted the many hospital letters that I’ve supplied them with. The work shy and lazy bums appear to be more equipped with the knowledge of how to claim every benefit that they’re ‘entitled’ to; I must have missed that lesson at school. Living on benefits shouldn’t be a way of life. Benefits should be capped. They should only be available for times of real hardship.

Entry 23

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!!!!!

Published

This year, I finally finished editing and consolidating the journals that I kept during and after my treatment for aplastic anaemia. In April, I decided to take the ‘brave’ step by publishing my finished piece of work. Under the nom de plume of ‘Ethel Shambles’, I uploaded my finished accomplishment on Amazon.

Last week, I was looking for a different cover for my eBook and wondered “why am I hiding behind a pen name when I blog under my real name and I Twitter under my real name?” It seems rather odd that I have fulfilled one of my ambitions (to write) and then hide behind a nom de plume when I don’t wear a mask for anything else. So, I have made another ‘brave’ decision – I edited the information for the eBook and published under my real name: R. J. Sefton.

By changing this information, I can no longer offer it as a paperback copy. It would seem that I have complicated things by changing the author, because the paperback has an assigned ISBN number. I will try and figure something out, but for now, my work is now available from Amazon on the Kindle for £1.99. Apparently when advertising the link, I ought to provide it with links to the .co.uk and the .com stores (according to some sources), so I have hyperlinked them accordingly.

This week, I shall upload the two ‘entries’ from Journal of the Nightmare Patient which I previously shared under my nom de plume so that they are available to read again. Should you wish to read the finished version in its entirety, well, you know what you’ll have to do…

(The two entries have been uploaded: here and here)