My friend

You are my friend, you cared when others didn’t,

I see you when you hurt,

I love you because you stand with me,

I love you because you’re great,

I love you because you are you.

Friends are precious never taken for granted,

True friends hold you up when the world is against you,

True friends support you when you are down,

But never try to steal your shine,

Friends love you for who you are, not what you have.

Friends might not be there when you want them,

But they will always be there when you need them,

They will say the right thing when it needs to be said,

They will respect you enough to tell you your wrong,

They will make you smile when the darkness comes over.

Friends are never afraid to give you a hug,

Never ashamed to show you love,

Friends are precious valued higher than gold,

Never take for granted the friendship you formed.

A good Dr vs a Bad Dr

This story comes from my visit to the hospital in June 18 with a very enlarged submandibular lymph node and very high temperature (39 ish). That's the setting if you want to know about my underlying health issues please read about me in my about me post.

On Friday I went to see my dentist as I had the swollen gland and it was becoming uncomfortable and as I was due to get the wisdom tooth removed the next week I was worried it could be an infection and didn't want to leave it over the weekend. The dentist didn't see any issues inside my mouth but as I have a weak immune system and the enlarged lymph she prescribed me antibiotics.

By Sunday, I went to the ED because the gland was very large and causing discomfort in swallowing but when the Emergency Registrar examined me he determined it was my lymph gland and the tooth which was due to come out in didn't look infected, there was no pain and no redness or inflammation in my mouth. So I was sent home being told the antibiotics I was on would kill whatever was there and since I was seeing Oral Maxofacial on Wednesday who would be better placed to review it.

So Wednesday came round and the gland was reduced but as my pre-op plan had not been coordinated I was not getting my tooth removed but they examined my mouth and it was ok. As I left the hospital I started to spike a temperature so I had some ice cream putting it down to the heat in the hospital. However, I had a night sweat so on Thursday I went to the ED because this was a more involved fever, I was taken into my local hospitals Combined Assessment Unit (CAU)

So now we have the background out of the way, what happened next is the strangest contrast I have had inside a few hours of each other.

Let's start with the good doctor, I was reviewed by an OM registrar: What did she do that was good?
She came in she asked me what was wrong, She listened to me as I told her and why I came in, she did a thorough examination of my mouth telling me what she was looking for and why and finally when she decided there was nothing OM related issues and that she would tell the doctor looking after me but they would be happy to come back if something developed. The Key is she treated me like a human.

The bad doctor came in like two hours later maybe an Infectious Diseases registrar, what was the Bad? She came into the room giddy, in my head, she had decided on her diagnosis before even meeting me, when she wants to examine my genitals (can be affected by mumps) didn't close the  blinds on the room and when asked only closed half of them I had to ask twice, when I was telling her what had gone on I told her that the ED doc had eliminated mumps because of the gland that was swollen she didn't seem to care, I was taken to the ID ward and placed behind barrier for five days a mumps test was done and I was discharged before the results got back. Heres the biggest problem when the test came back it was negative I didn't have mumps but I was forced to stay in a side room by myself with little contact outside of my visiting, getting medication and meals. I had my MMR vaccine as a child but it was not taken notice of. Her bad actions meant I went through what is always an unpleasant experience for me and my family as everyone has to mask, glove and gown up and I have to stay in my room.

I am used to being in a barrier situation as a person who is constantly neutropenic it is often the outcome on me being admitted, however, I object to it when I didn't need it. Mistakes have effects, this affected me mentally and if I had been in a couple days longer I believe i would have need to be treated for depression. I am a person, I am not a puzzle or a unique case for you to write up, would you like to be treated as such in my shoes I very much doubt it. So remember when you make a chose that will restrict a patient so much perhaps ask yourselves am I sure or mostly sure, because if there is strong evidence I can hang in with the best of them, I had 4 weeks isolated with swine flu in my ICU stay you prove to me its for the best and I will grit it but make sure it is the likely outcome before you imprison me please.


So the purpose of this is to highlight the good things that doctors can do, they are not difficult and if you are a good person you probably do it anyway but also to highlight the bad and the effect it can have on the person you are treating. The bad doctor didn't do anything horrendously wrong but the compound of a lot of little mistakes made for a big issue for me. I would also like to note it was the surgeon who had the best bedside manner, the best people skills and was the most humble so the idea that all surgeons are x,y,z is wrong. Patients are people treat them with respect.

Acceptance: The greatest Gift

Acceptance

I am a patient, medically an expert in just a few things,

Surviving Striving and Thriving while under stress,

An ICU stay that nearly ended me,

But turned out to be the rebirth of me.

I was never the most social of people,

Talking to others, terror-inducing,

The thought of parties a tiring thought,

Meeting strangers a crazy idea,

After rehabilitation complete, 

Invited to help those after,

Brought into a team as a peer,

Never looked down on but looked to for views,

Acceptance a feel new to me.

Hard work, volunteering and writing,

Drew attention from across the land,

An Invitation extended to speak,

A wary acceptance, fearing the stress.

Arrival greeted welcomed by all,

unconditional acceptance from strangers,

A strange new place I find myself,

Accepted by those who know me least,

Made to feel part of the team.

So I would like to thank the InS:PIRE team at Crosshouse who not only saved my life, helped me to rebuild myself but invited me to volunteer as a peer volunteer this has opened so many doors for me to talk about my experience and hopefully pass on any wisdom I have gleaned. 

I would also like to thank ICUSteps Edinburgh Who invited me to speak at their event but made me feel welcome and as if I was one of there team. It is very rare for me to be welcomed so warmly and unconditionally. 

This has only been possible because I nearly died and I am thankful that i did because these events changed my life for the better. It has given me purpose and meaning to my life and this was hard to find before my coma.

Ode to social Anxiety

Alone I sit awaiting my time to be called,

A foreign place with faces I do not know,

Anxiety forming in my gut,

Nausea my greeting.

Activity like ants going back and forth,

Each passing me by without a glance,

Moving from point to point in a trance,

Music in the air like a cooling breeze.

Invited here to tell my tale,

Invited to bare my soul,

Invited to help those who come after,

Invited to show the worst of my life.

Life’s journey is strange,

Never knowing where the tides will take you

The end certain but the route unknowing.

So this poem try’s to show what it’s like for me everytime I have to speak about my icu experience. It is taxing on me, it takes a lot of energy to do it. I have been asked why do I do it, why do I volunteer. I can help people by tell my story and that’s reason enough it is a poor human who can help and doesn’t, it is my job as a survivor to help others survive and thrive. To any icu professionals reading this remember a patients journey is not an easy thing to tell and if they share it with you, you should treat it with the respect and deference it deserves.