Wednesday, 6 February 2019

Hospital Life: A patient view.

The next few paragraphs where written in September 18 while I was in for my stoma relocation surgery (due to peristomal hernia and obstruction)

Ok so I’ve been in hospital ten days just now and a few things occur to me that maybe aren’t obvious to staff who work in hospital. First thing is sure this is your place of work but right now it is where I am living. You might think letting doors slam or dropping things etc is not a big deal but unexpected noises set tension in patients. Where you talk is important too, I understand that nurses, doctors etc need to talk to communicate things to each other but if you stand outside my door and talk about things it does two things one it constantly reminds me that I am not safe because anyone could come in at any time and two that I am not in my home I am in an alien place with different rules.

I think I am a pretty good patient, I don’t buzz for help unless it is something I can’t do myself or that I need to tell someone about (pain, bleeding dizziness etc) This however can lead to me being forgotten about, there is nothing wrong with every once in a while chapping on the door poking your head in and asking how things are. Remember patients are humans and like all humans we even the most anti social need contact with humans to maintain our sanity.

If I say that for handling the change of one of my IV drugs (steroids) to oral pills that you should speak to a specific consultant in my medical team don’t come back and tell me you spoke to a different department, I am telling you because they are the dr who handles them long term to me. Also when I tell you to speak to him before the surgery and a week later you still haven’t done it and your plan is to dump me back straight onto my maintenance dose don’t expect me to sugar coat it. I am a nice person and will speak to you civilly but when you don’t do your job after I have asked multiple times my tongue will sharpen, it might be numbers to you but it’s my life we are talking about.

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In contrast to this my stays in my local hospital’s (same hospital) combined assessment unit this year has been vastly different and I understand that the norm for them is to have a patient for 24-48 hrs before moving them onto a ward but as I was suspected of having flu and was neutropenic so needed a side room on Infectious diseases ward (like winning the lottery). So I was kept in CAU for 4 and 3 days respectively, even though I was ‘infective’ people always checked in to make sure I was ok and if I needed anything. When it came to discharge they asked me about how I usually stepped down my steroids, because guess what I’ve been doing it for 17 years I know what I am doing. I was treated like a human, never treated like an idiot and though isolated never ignored.

Since rediscovering this post which I had half finished I had a short talk with a Junior Doc. The doctor was talking about a more senior Doc whom they admired in their service and it was interesting that the things they admired most where not the ‘hard’ skills like intubation or knowledge of dosages of drugs to give or catching a condition from a patients strange symptoms. It was the soft skills, their ability to speak to a patients family in a way that soothed their distress, calming a patient who was troubled by not knowing where they where or dealing with other Docs to exchange ideas and try to get to bottom of patients problems.

As a person who has been a patient in hospital on and off for 17 years having spent what probably totals at least 2-3 years in hospital I can tell you one thing: Soft skills matter. Unless you are one of the best in your field where your excellence might allow you more leeway than otherwise, you need to be able to talk to patients and their family. You need to be able to speak in a language they understand and gauge the level at which you need to speak, ie. I understand more technical medical language than the normal person due to my exposure, so often they speak to me in a more ‘medical’ way but that’s not suitable for everyone.

As a medical professional whether it be a Doctor, nurse, physio, pharmacist or support staff in a hospital with inpatients you need to make them feel safe and included in there medical treatment. This is easier to achieve than you might expect as often simply speaking to the patient and explaining why you are doing x is enough. If you are unsure what to do think what would you want if you where in the bed and often you will have the answer. When a patient gets discharged they won’t remember who came up with a diagnosis or who got that tricky cannula in or who did x procedure. They will often remember the Doctor who took 10 minutes to explain what is wrong with them or what the treatment is for or what the test results tell them.

So basically in short never underestimate the power of speaking to a patient, you might change their stay from a scary experience to one they feel they have at least some control over.




Saturday, 2 February 2019

The Good and Bad times

We all have good and bad times,
We have to reveal in the good,
But push through the bad and the sad,
Trying not to get mad but always be glad,
For the good times and the people we love,
People sent to us from Heaven above.

The joys of the highs never lasting long enough,
The lows of the bad lasting longer than they should,
But in the darkest of times there is always a light,
The reason to fight, friends and family,
The people who made the good times great,
Also hold us up on the darkest days.

Love conquers all is a cliché,
But a kernel of truth lies in it,
Love gives us strength when all else fails,
A reason to crawl with your finger tips,
Love makes us the best us, gives us courage,
It makes us burn so bright we’re seen on the dark nights.

Death, fear, depression seek to snuff out the light,
Like a cloak of darkness they obscure your sight,
But all they have done is hide the radiance,
Look for the glow of those you love,
They will illuminate the path back home,
No dark is too dark to traverse back to family.

I saw a lot of people I follow on Twitter having a hard time and a few of my good friends going through some hard times. I have had two hospital stays in January for neutropenic sepsis so I was a bit down. I am extremely fortunate that since my ICU stay my ‘robustness’ has improved I have ways of staving off the dark thoughts or pushing through them quicker (Video Game Stardew Valley, poetry, expressing patient opinions etc). I wanted to let the people who are having hard times know I am thinking of you, I might not know what to say to you to help but I’m always thinking of you and worrying (it’s my nature I worry.) And I am also hoping this can help them see that it’s dark just now but it won’t alway be. You are all important to me and I am thankful for everyday I get to spend with everyone even if it is just an occasional tweet.

Saturday, 26 January 2019

My friends Struggles

Struggles


I worry when you go silent,
I know about your health and your struggle,
I'm not near, not in the loop,
So when I don't hear I think the worst,
In my head, it's a three-alarm siren.

I know you fight every day,
I see your battle and its inspiring,
Never give up keep battling,
Things might change,
You are my friend and I'm here to stay.

Days might seem dark but never forget,
Friends and family are here to support you,
We love you and need you in our lives,
Life takes strange turns but put our paths together,
It changed my life forever.

I don't have many friends it's true,
Little in number but in them I count you,
Similar battles we have fought and won,
And we both know our fights are not done.

We come from different places,
United by the fact we are Survivors,
Shared experience binds us,
United in the fight,
Stronger together in the journey of life.

I wrote this for a friend, who is going through some stuff, I hope it might help or at least let them know I am thinking about them. I'm not going to say who but I will let them know. I hope some of you might find some of my words helpful. You are never alone, there are always people who care for you and people to talk to. No matter the battle people will have gone through similar things, the is always support if you need it. But always remember your friends and family love you and will be there for you.

With Much love,

Mark



Thursday, 27 December 2018

The Evolution of Mark

Version 1(arrogant)
Born with a serious glint in my eye,
No in fact a terrible squint in my eye,
Dyslexia made Academia hard,
Struggling for each inch, each yard,
Cocky little dude who had it to easy.

Until 14 his life was pretty easy,
Doing well at school, no struggles,
Diagnosed with ulcerative colitis,
As well as Autoimmune Hepatitis,
This was his end he turned the light out,
He wasn’t equipped for the fighting.

Version 2 (Angry) 
Every three months in the hospital admitted,
Difficult to control my conditions,
Changing of pills and increasing steroids,
Rage building in my soul,
Part pills and part self hatred.

Hard to get along with,
In constant pain, lashing out,
Hard to live with,
But hard to be,
Conditions downward spiralling.

Till the fateful week where the bowl failed,
Blood running fast,
A wish to be dead,
Begging to end it all,
No fight in his souls.

He died no the surgical table,
Metamorphosis brought about a new age.

Version 3 (Mr Grit)

After the Surgery entered Mr Grit,
A fighter at his core,
Not stopped by twists, surgeries,
Nor ITP nor Neutropenia,
Going head long through every fight.

A kinder version but still hard on the edges,
Softening over the years despite the fights,
Helpful when you needed him,
Few friends but ride or die with them,
Until the 27th December 2015.

The date etched on my soul and my bones,
The start of the worst time in my life,
It was only a couple of days till I was fighting for my life,
The end of Mr Grit,
In the darkness of hospital recovery,
In the darkest of times spawned Mr Positivity.

Version 4 (Mr Positivity)

Modern Day Mark is so different,
Positive, supportive, Strong,
Undefeatable, different goals,
Different life, limited but not demished,
When down and out came the light inside.

Came the ability and experience to help,
Story laid bare for the benefit of others,
A part of my soul given to those who need the words,
A shoulder or hand given to those who wish it,
An ear to those who wish to share or commiserate.

A conscious choice to bring positivity,
To be as positive as can be,
If asked to help and able to, do,
A hand given because it’s right,
Knowledge shared freely.

Experience explained,
Turning the darkness into light,
Making the bad into good,
Staying positive when wounds turn infected,
Staying upbeat when life is affected,
Always looking back always reflecting.

Proud of who I am,
More friends now than I ever expected,
So very moved to be respectfed.



Hey guys thanks for reading, today is the 3rd anniversary of my admission that sent me to icu so after over coming my first panic attack in over a year I decided to set aside an hour to compose these and reflect on my life. I am so proud of the volunteering I do and I am so very humbled when I am asked to speak at events. I am so glad to have been given the chance to make my bad times into positives for other people and I am glad for each and everyone of you reading This because you have supported me in my recovery. My recovery from ICU will never be over as the after effects are still being felt and will no doubt linger as they have got worst with the passing years not better. I thank each and every one of you for your help support and love. I thank those who have asked me to speak, volunteer or help out, it means the world to me, you all know who you are.

Please feel free to comment or share 

With great joy

Mark


Wednesday, 19 December 2018

Terror on the horizon

The third anniversary

Terror in my gut is rising,
Gazing out my window at the horizon,
Dark clouds looming,
A storm is coming,
Steadfast in its way,
Girding myself for the fight.

My body wears battle scars,
My medals of victory,
Both pride and sadness,
Wars I’d rather not’ve fought,
Bitter sweet wins.

Broken, weakened, lifeless,
Death awaiting beside me,
But fight in me still,
Digging my trenches,
Readying for the war.

The battle done but the darkness remains,
Friends and comrades fell,
My sanity changed forever,
Memories gone never to return,
The darkness my friend my foe but never my master.

The 27th December is the anniversary of my admission which ended in my 3 week icu stay (17 weeks in hospital in total) I am so thankful that I am still here still fighting. I am grateful for the ICU staff at crosshouse hospital who gave me a fighting chance. I am thankful for the chance to volunteer with InS:PIRE and to speak at delirium conference in March. I have a lot to be thankful for and things I can still do, it’s easy to dwell on what we can’t do. I am aware that over the next few weeks I will be battling my inner demons but please know that dark Mark is still Mark he’s just got weights trying to hold him down. He will fight through it because I always do, just remember my friends that I love you and you mean the world to me. You teach me things everyday from POCUS to how to write poems to how to slay at podcasting or crushing it in making a new conference to promote women in medicine to the kindness I am shown everyday by you.

You been with me during my peaks Well now comes one of my troughs but remember we need the bad to appreciate the good. We need dark to appreciate the light.

Thursday, 13 December 2018

My bowels, my surgery and my scars


Above is my abdomen at the moment I had surgery in August and it’s taking a while to heal so hence the dressing. Scar one is my original stoma site 0 was a stoma put in ~2010 it was placed as an emergency because I was bleeding profusely and wanted to die but it was the greatest thing ever because it stopped the pain of my ulcerative colitis and made me feel so much better I went from 60kg ish to about 75 kg and for 2 years it was bliss, I didn’t and still don’t like my stoma but it was a vast improvement. Then I started getting peristomal hernia and bowl twisting issues, I have had with that stoma maybe 8-10 hospitalisation with twists and two resulted in peristomal hernia repairs until 2015 when it was moved to site 2 now this stoma had no chance of surviving and it I am honest I am surprised it lasted as long as it did, it was another emergency move but one month after it I was in ICU for my coma time I went from 90kg down to 65kg (i’m 6’1” for reference) so all the muscle it was stitched to and relying on was wasted away. That brings us to site 3 relocated in late August 2018 it is December at this moment and it has not fully healed because site 2 got infected and went septic, ML my mid line wound which was about 10-11 inches long dehisced (burst open)leaving a wound 2 and a half inches deep and four inches wide. Thus it has taken a long time to heal needing the assistance on vacuum dressings and Iv antibiotics to treat the infection which undermined it in the first place. The reason the area around 1 and 2 is so saggy is that it was heavily herniated and I have lost 12kg so I have a lot of loose skin, my abdomen doesn’t have many flat places it is akin to the alps

Remember just because someone looks normal (and I do most of the time because of how I dress and the behaviours I use to draw attention away from it) doesn’t mean they’re not scars lying underneath. This trauma on me is easy to see once the barriers are removed but it’s exactly the same for all trauma we put up barriers to protect ourselves all you need to do is know how to look or what to ask. Whether the scars are physical or mental remember they are the result of trauma and are often hard fought for, they should be treated with respect and dignity. I am very anxious about posting this as the internet is often a nasty place but I think this might help some people so it is worth any shit that comes my way. Just remember people we all have scars never be ashamed of your battles and remember no matter how hard your fight there is always people to talk to even if it’s just on Twitter.

Tuesday, 11 December 2018

Capital Night

My trip to the capital quick and fun,
Till we got to the centre then the nightmare begun,
Round and round we go, tempers beginning to fray,
Driving around till day became night,
Thank gosh I only here for a one night stay.

Excited for the night out but equally frightened,
These people I’ve met once so kind and inviting,
I sit in my hotel anxiety building, 
The knot in my stomach slowly churning,
But my conditions will not stop me,
Nor will I let them define me.

Met them once but some feel like lifelong friends,
Funny how ICU can unite you,
That journey shared needs not to be spoken,
Each of us strong when formerly broken,
Unashamed, unafraid, unbashful,
Life is for living not living in fear.

They invited me even though practically a stranger,
Accepted into their group without reservation,
Fortunate to have such wonderful friends,
Blessed to have found them in my recovery.

WDAD 2025

  Wondering every year what will change, Delirium talked about only on this day, All I see in papers is the damage it does, Don’t know what ...