A bad night brings a good day 🥰

After a terrible night last night, a good day began.

I awoke in pain (not the great bit) which is not unusual.

The key to a good or bad day comes down to staff on the ward

This is the mix between Nurses who are medically taking care of you administering drugs, changing wound dressings, being the eyes and ears on the ward, hearing and seeing everything and reporting back to the doctors and the Health Care Assistants who become your literal everything, especially when you are quite immobile like myself at the moment, where I cannot even sit myself up in bed without the support of 1 HCA, standing requires 2 HCA’s and a move from bed to chair takes 2 HCA’s a huge amount of time and the ultimate patience I didn’t know any human could have.

Then both of these roles rely heavily on each other’s support. 1 in physical numbers, making sure that ratio is correct and making sure that the mindset is correct!

The bad bit

In the morning I was going to be in pain, playing catch up until I had the right painkillers needed to function.

The Doctor is in the House

The main doctor (who’s name I still can’t remember) appeared with the two female doctors – Dr Sian who held my hand on the the first day on this ward and really made an impression on me, that girl is going to heaven and the other doctor’s name badge is under PPE but I will get it, who is also wonderful.

First they visit E, diagonal on the bay from me. E had her big op the same day I had my 3rd and as soon as I heard her pain noise, I knew it was a stomach operation pain. We as a collective ale very distinctive stomach pain noises, I have researched so far 3people.

E’s situation is not too dissimilar to mine, a lot of similarities, except for knowledge. E has colitis, a sibling of Crohn’s (I believe, I haven’t finished Google yet) she has been aware of her condition for 20 plus years and has been treated for one thing and another and then after consultation and thought decided to have the operation she had.

I just had ‘Surprise you have Crohn’s! You now have half a bowel, a mutilated stomach and a (reversible) Stoma!’

But anyway, doctor visited E first, he didn’t bother with the usual scrap with the dodgy curtains. He said E, you are doing great, keep going as you are and we can remove this wire/tube tomorrow and then we are really look like getting you home by the weekend.

I sat behind my own dodgy curtain, did a little smile for E, it doesn’t always have to be THIS complicated … but then I had a little cry. It is more complicated for me so far

The Doctors are now with me. ‘Still got that spike in temperature’ he says and that’s enough, I am crying. He sits down on my bed, looking a bit confused and asks me what is wrong.

All I hear is other people getting good news! 😭 but for me I try to explain about the Hospital being the hardest place to get painkillers in the world, you never get them on time so I end up a pain And then someone will come to my obs and all my numbers will be bad. Temp high, blood pressure low, pulse fast … because I am in pain. And then I end up on Oxygen/a nebuliser and worst, feel that at any minute someone will appear to say that need to take me back to theatre to see what is going on. All because I don’t get pain relief on time/when I need them.

He smiles and says he agrees with everything I say, Yes, it is not unreasonable to think that my pain is the cause of spikes in temperature or other changes to obs. They were actually looking at my notes outside and had come to the same conclusion, having heard me say this to them multiple times.

You are doing brilliantly

The doctor reassures me that I am doing well. I am getting better, I am moving forward and heading in the direction of home. This is the first time that anyone has suggested the word home to me rather than talking me away from that thought.

It is now for me to eat up and get nutritionally stronger and work with the physios and get my arse home!

This feels like Good news for me

After the doctors leave, I sleep, it is like a sudden sense of release and I sleep for 5 hours!

I wake up, have some lunch, Caroline from occupational therapy comes round and plans to help me into the chair after lunch so I take some pain killers and long out lunch to make sure maximum painkiller impact and get pumped up 😂

Physio

This is the dread of my day. It is physically exhausting plus excruciatingly painful on my stapled together stomach.

But also I look forward to this part of the day because Jenny and Caroline the therapists are just great. I am free to speak like me and react to things in my way, dark humour, sarcasm, just plain rudeness and they give back as good as they get.

This is what I need. They push me but recognise that at all times, I am a woman on the brink of a break down and know when to give me the space.

In another life, I would like to do their job. It must be so rewarding to be able to finally watch someone like me walk themselves about of hospital when a few weeks before they needed to call for help to read adjust their numb bum in the bed!!

The real problem is not this distance. It is the whole process.

• Getting from whatever position you are in
• Sitting yourself up
• Moving across the bed
• Turning so legs are dropped beside the bed
• Slippers on
• Stand tall
• Take those 3 steps
• March on the spot a couple of times
• Sit down

This is a very long and slow process which for some in the room takes minutes but from this bed it is about an hour. But I did it … eventually. And doing it was enough, I was ready to get back into the bed that had been changed and was ready and waiting and once again, as soon as I laid down, I was sleeping!

Enter Mum and Dad with Subway for dinner 🥰

Mum and Dad are the bringers of food, they know I will not eat Hospital food, pure microwaved ready meals … not sure if I have mentioned the microwaved toast before 🤮 If not there is a whole post ready to go just on microwaved toast 🤮

The Always bring me an ice lolly with them 🥰

They have been here a while, I recount them on the highs and lows of the night before.

They are struggling to write the last piece of the blog that I need to explain properly what has happened to me, as a huge part of this I do not remember/was in theatre/ semi conscious for, so we talk it through for a while and I tell them to write as much or as little as they want to. That is their trauma and as much as I would take it away from them I cannot. Hopefully they both enjoy a little pen and paper therapy like I do.

😂 Now my words are getting slow, my eyes are getting heavier and it takes a while but mum and dad decide to leave.

They never just say Bye and go. It’s always, alright then mate, anything else I can do mate … which worked well last night as 15 minutes after mum and dad had ‘left’ I saw dad had forgotten his phone. They hadn’t even made the lift yet so the nurse caught him before he left 😂

The key to a good or bad day comes down to staff on the ward

Last night nurse came to change my dressing while mum and dad were here. I asked for 10 minutes and she said call when ready, mum and dad left, I called she came round with another nurse before 7. It’s only when they start doing it that I realise that dressing was leaking a little so good times, caught before on gown or sheets or anything that means having to get washed and changed or prodded. They start to change the dressing but the little tiny scissors, nips the stoma bag.

Really though, for the squeamish here is your moment to opt out!

… but the little tiny scissors, nips the stoma bag causing a fucking Tsunami, with a now open wound. Panic stations … they managed to protect the wound and get everything sorted. Wound dressed, tube not, new stoma bag on. Nurses start rushing around at this point and I can see what they are doing, it’s hand over time.

I said, I’m going to need at least this pillow laying beside me changed, my bed checked, a bowl or soapy water to wash myself and a new gown. They said sure, someone will be in to help you. And left for handover.

Leaving me in a gown covered in pus and shit for 45 minutes while they did hand over.

Eventually for buzzing a new shift HCA can me in to help me and I asked if the nurses were still here and if I could speak to them, they were I could hear them but she told me they had gone home. I explained the above and had a very robotic response of ‘they were very late for Hand Over …’

The Get it and the will never Get it’s

The 3 ladies in the bay at the time with me stared at me in disbelief. Full of apologies, if I had known etc, and I was so thankful to have their outrage on my side!

We have formed a little working group at this point as it is the only way to survive night shift! If one cries in pain, someone else presses the button, we are support each other and encourage each other. It is actually a very lovely thing and makes me happy to have left the side room behind. In a perfectly oiled machine, the side room is the dream. In this chaos, you will just get forgotten.

I am also at the point now where I am not allowing myself to be so angry with the staff that ‘will never get it.’

‘It’ being that I am a human being, a female, who nearly died a few weeks ago, who’s body has now been violated with no warning or build up and disfigured beyond belief, who spent time in ITU as was unable post op to keep myself alive so machines didn’t this for me. I have feelings, I am here, I am not JUST a procedure in a bed, or a task list on a chart. I am a person. I am important and I should expect, like every other patient to be treated as so.

The Get it’s, get it. These are the Shirley’s, the Lara’s, the Karen’s, the Nell’s, the Sian’s … the ones that see that you are crying and genuinely want to help you to feel better and not want to cry anymore. The ones that will speak to you during a procedure ‘your doing a great job’ ‘almost done’ … basics of humanness.

The will never Get it’s, such as the nurses from last night’s dressing fiasco, will see a task to complete and heads down they will do that (within working hours of course). Through the entire redressing of my stomach, not one of them spoke to me. Not a ‘well done’ not a ‘nearly done’ just nothing. And they will never understand how that made me feel …

Well they will as I intend to do a full letter to the ward sister on discharge re my experience both good and bad. 😉