Getting fat on steroids and other stories

Have you had an operation?

Err, yes, I had a sequestered disc fragment removed around four weeks ago.

Oh, okay.

To be honest, I was quite surprised with the question from one of the more senior nursing team members who’d looked after me during my time in hospital. I was more surprised as she was the one who’d spent the most time with her thumb up my rear exit (take note Oscar Wilde), plying me with unwanted but necessary enemas.

This was my how my first meeting started, in the Spinal Outpatients Cauda Equina Clinic.

How’s the bladder?

Oh, it’s fine thanks. Been perfect since I left hospital. Still uncomfortable, maybe even a little painful with the pins and needles but all working just fine.

Oh, okay. Do you need a wee now?

No, I just had one before I came in.

Maybe just a little one?

Well, probably. I have just had a coffee or two.

Can I scan your bladder?

I guess so, if you need to.

Well, I’d like to, just to be sure. How much do you think you have?

Oh, around 250ml, so not much.

Two minutes and one scan later.

You have around 250ml. Now would you just pop to the toilet and get rid of that?

The rescan after my trip to the toilet showed 23ml. A successful visit. Well done.

So we have a few questions.

Okay,

We are waiting on the pathology of the scan?

Oh yes, that’s all fine.

Really?

How do you know that if you didn’t even know I’d had an operation?

I’ll look now shall I?

Look, there it is. All fine. Nothing to worry about.

Can I have a copy of that?

No, it’s not for you.

Really?

No, but you can look at it.

Well, that’ll have to do.

Another question?

Okay.

I am running out of steroids and only have enough for tomorrow. I don’t want to stop taking them without direction from the consultant as it says that on meds sheet I left hospital with.

Oh, your GP should have sorted that with you.

Well, they haven’t because they haven’t been great throughout this, so what should I do?

Chase your GP up for a meds review. They should have been in contact with you over your discharge anyway.

Oh, they haven’t and to be honest I’m not that keen on going back to the same GP after they let me down so completely.

Well, you’ll have to sort that with your new one.

So I’m concerned about my pins and needles, which isn’t easing.

It’ll be okay. Just wait six months or so. Maybe a bit longer, say two years.

And do I get to see a consultant in my next appointment in a few weeks?

No, you can cancel that as I’ve seen you now and that’s just a post-operative catch up like this one.

What about driving, what happens at six weeks. How do I get assessed for driving again?

Oh, you’ll be fine.

Really? I don’t think so. I’d be deadly as my right leg doesn’t work properly and my left is still pretty weak. I can’t move my foot across between pedals.

You just have to practice slowly and brake gently. You’ll be fine.

So that’s it?

Yep, you’re good to go.

Bye.

Getting fat on steroids

After the operation, I was put on a course of steroids. Steroids help with the recovery and muscle growth and are a good thing. They are also highly addictive, play havoc with your taste buds and make you constantly hungry.

They also make you fantasise about food, lick the plate in restaurants and eat all day. From the moment you wake up to the very millisecond before you fall asleep. All you want to do is eat. But weirdly, you want to eat very specific foods.

On the day I got home, I just had to have Fish Tikka from The Shalimar in West Bridgford. 

So the first meal at home was Fish Tikka delivered by The Shalimar. 

It was the nicest thing I’d eaten in months. I’ve never eaten anything that tasted more perfect.

My first trip out after leaving hospital was with Holly for Sunday lunch at Gusto, West Bridgford. I put on big boy jeans and a watch. It was like being an adult again after a month in shorts or pyjamas. We were missing our neice Georgia’s 21st birthday Party in Wirral and that was tough. Sadly, the right thing to do, but tough. So the least I could do was get Holly to take me for lunch.

My starter was garlic mushrooms. creamy, garlicky, mushroomy loveliness. I tried not to lick the plate, but my finger slipped into the last bit of sauce and edged into my mouth. Soon, the plate was completely clean. The main was cod wrapped in parma ham, on a bed of Puy lentils. Again, gorgeous and the plate licked clean surreptitiously. I’m not normally a pudding person, but new steroids, new taste buds and what’s not to like with a hazelnut brownie and pistachio ice cream? The food was so tasty. Shame the coffee was so crap. An Americano without a hint of crema? How do you achieve that? But overall, as a first trip out, it was hugely successful.

I got up to go to the toilet at the end of the meal and asked a staff member if there was a toilet downstairs.

No, sorry it’s just through the doors and up the stairs there.

Okay, no problem, would you like to carry me up them then as that may be a bit of a challenge and I really do need to have a wee quite soon?

Leans forward to look over the bar.

Oh I’m sorry, I didn’t see the stick. Yes, it’s just through the back over there on the right. Sorry. Err, sorry, sorry, sorry. 

The next fascination, no obsession, was Mackerel pate.

I finally got some from Marks and Spencer on an urgent Mackerel foraging trip. Sadly, their efforts just didn’t hit the mark. as I’d seen, read and drooled over a Jamie Oliver recipe on Instagram. So, eventually, I had to make it. And I’m going to eat the entire gigantic Kilner jar of it, all on my own.

That’s 400g of Mackerel, 200g of light cream cheese, black pepper and the juice and zest of a lemon. Jamie Oliver, I salute you.

Lovely, lovely mackerel pate

Messages from friends when you need them

If you ever hear of a friend who is in hospital or in some form of distress, then message them, call them or if you’re not brave enough then write.

Just make contact.

It’s better to be clumsy but kind and maybe get things slightly wrong, than to say nothing at all.

I promise you that saying anything is hugely appreciated. Whatever time of day or night.

The messages I got in hospital were amazing. Literally hundreds of them. From friends, at every stage of my life.

A group of friends from Primary School in Oxford. Just so thoughtful and appreciated. Friends who I’d finally caught up with in the summer from my time in my teens down in Devon. Those I met up with again when I moved back to Oxford and then University friends. And it even prompted some of them to get together themselves after 25 years.

Messages from Nottingham Trent Uni students who I spoke to a few weeks before and work colleagues from everywhere and every time throughout my life.

Messages from friends and family who’d been through the mill themselves and had much tougher times than I’ll ever know, making the effort to write really thoughtful, inspiring, kind messages at three in the morning give you the power to keep going, to drive yourself forward and to get up and go again.

Messages coming in on Whatsapp, Facebook, this blog, Messenger and by text. Literally, every channel online filled with kindness.

There was just so much good will and thoughtfulness coming at me from every angle that I had to get better so I didn’t let people down.

Hopefully, I replied to every one of you. I don’t remember receiving all of them in my early drugged state, but I can tell you how much it meant to receive them and I will forever be grateful to all of you for picking me up and throwing me into my recovery. And then standing by me through every step I’ve made since.

So if you do have a friend in need, please do say something.

Saying something is always better than saying nothing and it’s always appreciated.

Rest and recuperation in Anglesey

My recurring dream in hospital was being by the sea in Wales, breathing the beautiful clean air and resting, between walks along the front to get ice cream. At this point, for every hour of activity, I need about the same again in sleep during the day.

And then our gorgeous friends the Kimpton’s jumped forward and offered us their beautiful house in Cemaes Bay in Anglesey. genuinely one of my favourite places in the whole world. It has so many happy, family memories of times there, that I couldn’t imagine anywhere in the world I’d rather be.

The drive could have been a challenge. Poor Holly is getting lumped with all of the grunt work I’d usually do. All of the shopping loaded, packing the car and then driving, while I sat as a passenger chatting to friends and surfing the social media.

A few stops. Snugbury’s for Ice cream. and then after an overnight in Wirral and we arrived in Cemaes.

Starving.

So we parked the car at the top of the village and walked down to get some food to eat on the harbour wall. Fish and chips for Holly and a pie and chips for me. The struggle as to which type of curry sauce to add (Chip shop or Chinese) and a waddle to the harbour.

Simple food has never tasted so good.

On a bench, by the sea with the wind in your face (not my hair obviously), in a place you love, with your wife who’s been so incredibly strong over the weeks we’ve faced together and Frankie, the ever-present support, by my side, day and night.

by the sea at Cemaes bay

When we’d finished our lunch, Holly walked back up to get the car and I walked towards the house at the far end of the bay. It was only a short walk, but when I came around the corner and saw the whole bay and the house at the far end.

I stopped and cried. (again)

I’d never been happier to be alive and to just be somewhere I wanted to be.

Honestly, the only place I wanted to be.

I think I was just glad to be.

Striving for normal

Since I left hospital, I have been striving for normal. I just want to do things again that normal people do, or what we did before. On the way back from our Sunday lunch at Gusto, I was desperate to just call into the Co-op again to walk around and browse a few items.

I only bought some fresh bread, but when I got home and was sitting in the kitchen with the bread slathered in butter, it tasted amazing.

But it’s the little things I’m missing. The total dependency on others to do almost anything or get anywhere.

It’s a good few weeks on from the operation now and I’m safe enough in a shower, but the first few weeks were scary and very public affairs. Showers together are meant to be fun aren’t they?

They aren’t when the together means you have a minder, just checking you’re not falling over. So, getting that little bit of privacy back felt like another step towards normal.

When you can’t drive, you can’t just pop to the shops, I’m not safe enough to get on a bus on my own yet to just nip into town for a coffee with Ruby at work and I can’t even walk as far as the pub for lunch (yet).

So my striving for normal is a real drive. It’s almost more important than anything else I’m facing.

I have no intention of applying for a Blue badge. Even if I do end up with a disability, I’ll still park at the back of a supermarket car park and walk, rather than abuse my position and scramble for the places at the front.

When you lose normal, you realise how much normal means and how wonderful normal feels. I understand that everyone’s normal is different, but normal is great.

It’s just sort of normal.

I want normal back.

Mental health and hospital

Perhaps the biggest surprise to me is the mental health aspect of what I’ve been through.

No strike that.

What we’ve been through.

Within a month, we’ve gone through total and real fear of zero mobility. before this, the dread of hearing the words ‘Spinal Tumour’ by a still unnamed doctor.

When it all started and my legs gave way, my very first thought was that I had a brain tumour. I understand mechanics quite well and when my legs gave way, it was very clearly not a mechanical fault.

My own lovely Dad started dropping things and tripping up too regularly before it was discovered that he had a brain tumour. From quite early on, it was clear it was an electrical fault wih him and the question of whether it could be hereditary was never completely answered by the same GP over ten years before, who ignored this issue. It’s always sat there bubbling in the back of my mind.

But today the new normal kicked in and it was another teary, scary affair.

Holly went back to work.

Alarm going off at 06.30, making the coffee, getting up and getting ready before having breakfast together. Ham and eggs. Lovely.

All things we did before, but haven’t done since.

And then it got to 08.20 and Holly left.

I sat in the conservatory and cried and cried and cried. Fat, snotty tears dripping off my cheeks and landing on Frankie.

I’m not sure why really. I guess it’s because I was on my own for the first time in a month or more.

Luckily my mobile went off and it was my sister Sarah.

Perfect timing.

She dragged me back to where I neeed to be and 45 minutes rabbiting on the phone was exactly what I needed.

But where would you turn to if you didn’t have this incredible level of support that I’m lucky enough to have?

There’s nothing from the hospital. Nothing yet from the new GP (who seems to be brilliant) and without the family support, you’d be completely alone.

I don’t even have any suggestions about how to improve this but some contact and support would help.

You do feel incredibly isolated, however strong you think you are.

Later the same day

I got the call from the Spinal Injuries unit in Sheffield who are overseeing my care.

Unbelievable.

For all the ridiculousness of my meeting with the clinic in Nottingham this was the exact opposite.

Reassurance personified.

After a 15 minute conversation I now have a much clearer and realistic picture of my rehab. It wasn’t all good news and some things will take much longer to recover than I hoped. But I know now and can get used to dealing with it.

I’ve also been told very clearly that I’m doing too much, ignoring what my body has been telling me and pushing too hard to get back to my normal.

So it’s more rest, slow down and allow myself to recover.

And the pins and needles.

Get used to them.

They may be with you a while. Maybe forever. 

Bollocks.

But hey. If that’s what the new normal looks like, I’ll take that. 

Author: Johnny Lyle

Creating brands and building businesses in the Themed Entertainment and attractions industry.

23 thoughts on “Getting fat on steroids and other stories”

  1. More tears from me. As a senior nurse I feel ashamed of the consultation you describe. It’s everything I have ever tried not to be. Today is international nurse and midwives day. I am glad the other lot were better.
    You document your journey so clearly. I am sorry my little bro has to go through this. Yes you now know it’s s long haul. Getting back on your feet was step 1. What you are doing is facing every challenge as it arises and doing it marvellously. I’m proud of you and Holly and the kids. I guess the dog too. And my intuitive sister who had the bad feeling when you were admitted and phoned at the right minute. Sorry Sarah for putting you after the dog. 🙂
    Keep getting weller each day xxx

    Liked by 1 person

  2. Happy to be after the dog as it’s Frankie!
    Talking of nurses I told two nurse friends about the ridiculous consultation and they were really embarrassed for their profession but also, like me , not surprised . Sad that we’re not surprised though.
    Keep going Johnny , maybe lay off the chips a bit !
    Xxx

    Liked by 1 person

  3. Johnny, I don’t think we’ve ever met. But I’m fortunate to know your beautiful wife and fabulous extended family. I’ve followed your progress avidly and am so pleased you’re on your road to recovery.

    Your post brought me to tears and compelled me to reply. Anglesey is one of my favourite places too so I fully understand why it would have evoked those feelings in you. It has that power. And your emotions after lovely Holly left for work – again, not surprising.

    Thank you for sharing your journey with us. Here’s to your continued progress. Rest up, stay well and keep strong. You are an inspiration.

    Em xx

    Liked by 1 person

  4. I’ve only just caught up with what’s happened and I’m so sorry to hear what you’ve been through. Id live to write an eloquent, thoughtful message to you, but my adled toddler brain (we’re dealing with proper night terrors at the moment) won’t allow. So just know I’m sending love to you and your family (out of sight does not mean out of mind!) and having caught up with your posts, I think your writing is inspiring. Mrs O x

    Liked by 1 person

    1. Thanks Beth. Night terrors are awful. We had them with Ted for a few years. They do eventually grow out of them so hope that happens soon.

      I’ve found the whole exercise of writing it down really cathartic so why not do the same with the night terrors as it may help someone else and help clarify things yourself.

      Go on. Give it a go. Just go to WordPress.com. I even set this one up in my phone! It’s that easy!

      And big live back x

      Like

  5. So moving Johnny. Cannot believe (and yet can) how poor that consultation was. Shocking but not surprising. Take it easy, like Grolsch, you can’t rush these things. Lots of love and a manly hug from Andrew 😉🐶

    Liked by 1 person

  6. Johnny, Holly… this has just appeared in my newsfeed. I had no idea you’ve been through all this. Shocked, saddened and annoyed all in one go. Unfortunately, there are some unsavoury “medics” about and I really think my GP is doing a stint up at your neck of the woods too.!
    You have achieved so much in such a short space of time Johnny, keep doing what you’re doing and never give up hope.
    Take care, both of you.. lots of love. Xxx

    Liked by 1 person

    1. Thanks Hellie. The NHS teams have been amazing. A few very shite GP’s who seemed too disinterested to actually notice someone in front of them in real trouble and s pretty dim nurse practitioner.

      But in the main they have been amazing. And I mean truly amazing wonderful people.

      I was in hospital on Thursday for physio and met one of the nurses in the cafe (eating again) and she ran over and gave me a hug.

      That’s the real NHS. Not the few who let it down. X

      Like

  7. Hello John,
    Truly insightful update, much respect for you mate.
    I’m meeting Mike Vella this evening for a long overdue catch up – we shall raise a glass to you and your lovely family.
    It’s quite a posh restaurant too, so I may even lick the plate in your honour.
    Stay strong fella
    X

    Liked by 1 person

  8. Keep writing these John, I love reading something so candid and well written. Im glad to hear you are wearing big boy pants now and having a wee wee on your own, (the parts that make me laugh). Seriously though, with your determination and the lovely Holly by your side “Things can only get better”. Unfortunately mental recovery and health seems to be the forgotten illness in our NHS. I wish you well and hugs to both of you. (Keep writing) Suzanne xxxxx

    Like

  9. Good writing John Boy.. glad the old GP is out of there.

    I digress; one of my friends from London that I speak to once every couple of months, when I ask him how he is, always answers, “normal”. When this answer changes, I will know to investigate..

    Here is to “normal”.

    I am off to be happy normalling, I will cut the grass while my kids pretend the mower is a monster chasing them and I might have a cold beer this afternoon while the Liverpool match no doubt frustrates me..

    What pie was it ? You see I am not on steroids, but I seem to have the side effects.

    Liked by 1 person

  10. Hi John, did keep up with your blog thru the early days of your abnormal period in hospital, and find that you are just as witty , now you are normal. The toiletry bits made me laugh, a bit of light relief, and writing the blog I think, did that for you. Your comments on the meaning of life et al made us all take a double take, keep on getting back to your old self. Love you, Brenda and G

    Liked by 1 person

  11. Weeping (again) and super proud..
    Love your ‘big boy jeans and watch’ line..
    I’ll come and take you for a spin if you fancy and it’s allowed?
    Take it nice and easy Mr Lylee.. x

    Liked by 1 person

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