I got my date for surgery

So I have a date for the next, sorry I mean LAST surgery! 30th April I will be heading in for what I hope and pray will be the last operation I have.

Ive been referred onto a doctor who specialises in complex abdominal cases and he is going to repair the two hernias and move my stoma again. I have been warned that it is a major operation, that my case is complicated and will be difficult and that he won’t really know his plan until he opens me up.

The parastomal hernia is huge, the opening is very big and measures about 15cm on my stomach and they know I have a lot of adhesions, that everything is stuck together.

They said it will be around 6-7 hours of surgery, 10-14 days in hospital and 2-3 months off work recovering.

Ive been told it’s risky, that I have a 75% chance of complications and that is terrifying me. I have stopped smoking though, I’ve moved onto a vape and this reduces my risks by 10% so that’s one positive.

Ill be going straight onto the POSU (Post Operative Surgical Unit) with the chance that I may need some time in HDU (High Dependency Unit).

Sam Cleasby Sheffield blogger chronic illness hospital surgery

How am I feeling? Well it feels very real now, though I knew it was coming, having a date has set it in motion and I’m feeling panicky and anxious. I’m scared of the complications, I’m scared of the long hospital stay, I’m scared I won’t come home.

I know I can’t dwell on thinking negatively but man, I just feel so frightened that this will be the one that it too much. This will be surgery number 8 in the past 5 1/2 years and I can’t shake the feeling that it’s one too many.

I’m in so much pain every day, it feels like everything is going to fall out of my stomach every time I stand up. I am struggling to function, I’m always in bed. Doing one thing means a week of being unable to stand. I’m always medicated and drugged up and I know I can’t live like this and that I need this surgery.

And so I have to try and think positively, I’m reading a lot about the mind body connection and how meditation and visualisation can decrease pain, stress and anxiety and can improve mental health, shorten recovery time and help you heal quicker.

I feel like I’m on a narrow ridge, on one side is positivity, strength and happiness and on the other is a swirling mass of anxiety, fear, sadness and panic and honestly, I feel like I could lose my balance either way right now. I’m trying to slide into the positivity but there’s this weight pulling me towards to shit storm of crapness.

Planning

All I can do is fight. I’m doing everything I can to be as strong as I can mentally going into this. I’m meditating daily, I’m spending time outdoors, I’m planning my recovery.

But there’s still a part of me that is planning to fail. The chest freezer I bought and filled with food so Timm won’t need to worry too much about big shops when I’m in hospital is also a safety net of me thinking they’ll have food if I don’t make it. The days out and nice things I’m pushing myself to do are because I won’t be able to do much for a couple of months will also be nice memories for the what if.

Fuck, that’s dark isn’t it!!

The thing is that keeping those dark thoughts to myself gives them power, it allows them to take over my head and drown out anything good and so I say them out loud and yes, they’re depressing and horrible and messed up. But then I see them written down and can separate myself from them, I can see them for what they are; my anxious brain coming up with a list of what ifs and plans for the worst.

And once they’re out there, maybe I can let them go and go into this surgery as positive as I can be.

Wish me luck, I’m going to need it.

✌🏽& ❤️

Sam xx

Big news! Nowt So Strange As Folk!

Some of you are listeners of my radio show on BBC Radio Sheffield, Nowt So Strange As Folk. I started last year and the past 6 months have been an absolute blast but now I have some big news!!

The show hosted by myself and co-host Leesh Desauzay is a modern family life show and we talk about everything from relationships, disability, food, kids and more and we love it so much!

Sam Cleasby BBC radio sheffield nowt so strange as folk

I’ve always been a talker! And I love chatting with people and hearing their wonderful stories and so being a radio presenter is just a dream come true.

And so I can’t believe that our Wednesday evening show is moving to Saturday mornings!

From Saturday 6th April, you’ll be able to listen in from 10-12 in the morning each week! Prime time baby!!!!

You can find us on BBC Radio Sheffield, online or on the BBC Sounds app, id love to hear what you think! Have a listen and get in touch – Nowt So Strange As Folk 

✌🏽& ❤️

Sam x

When illness gets in the way of intimacy – how do you make it work?

Who we are and how we feel about ourselves is based on so many different things and can alter, move and change depending on what we’re dealing with at any one time. Right now I feel that I’m a bit lost, I feel vulnerable and raw and in particular I feel I have lost my femininity and sex appeal. And by that I don’t meant how others view me but how I view myself. Feeling sexy feels like a thing of the past.

Sam Cleasby Sheffield blogger chronic illness hospital surgery

I’m generally very much changeable, equally comfortable in make up and sequins as in joggers and a jumper but more and more I find myself in those joggers and less and less making an effort due to illness, pain and fatigue.

Body positive?

In a world of body positivity, we know we’re all meant to love our bodies. But when our bodies are broken, causing pain, are fatigued and disfigured, sometimes I don’t love my body and actually the body positivity movement make it harder to voice that.

Currently my stomach is swollen, it has one large protrusion on one side and a smaller one on the other. I’ve gained a lot of weight because I can barely walk. Im in pain every single day. I hate how my body looks naked and none of my clothes fit me properly.

Its hard to say that though, especially as a blogger without feeling that you’re setting a bad example, not a good feminist, being negative about disability or perpetuating body stereotypes! Dude, sometimes I just want to say I don’t like how I look without it being about society! Sometimes I just want to be able to say I feel shit!

I end up in joggers most of the time because it’s the one thing that fits me and is comfortable. But it doesn’t make me happy, I know I look like a scruffy, fat mess most of the time. I’m so tired and so often I just wear a beany hat to cover how bad my hair looks and naps win over make up any day.

Feeling sexy

I used to feel sexy. And by this I don’t mean a pouty, booby show for others. I used to feel powerfully strong and beautiful and sexual and in control.

Right now I feel a million miles from that and honestly? It’s only going to get worse for a while with surgery and recovery. My body feels like it’s all about illness and treatment right now with no time or energy for looking good, for sex, for intimacy. But because I feel so different it’s like losing a part of yourself. Like feeling like someone completely different. Like you’re a stranger to yourself. And it can be hard to feel sexy, to give yourself to another person when you are not entirely sure who you are yourself!

It’s hard to feel ‘in the mood’ when you’re either in pain or stoned on painkillers, exhausted or asleep, when your body looks and feels weird to you or you’re wearing three different hernia belts! As they say in Hamilton, “It’s hard to have intercourse over four sets of corsets!”

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

Feeling lost

Joking aside, I just feel so lost. So sad. So empty today. I have a really physical reaction to upset, my stomach turns and flips and it’s doing cartwheels right now.

I wonder how I can be a partner to anyone in this state? How do you cope as the partner? Can relationships survive when illness gets in the way of intimacy? Is feeling sexy a possibility when you feel bad about your body?

I get lots of emails and messages about this subject and I know it’s sensitive and personal but I’d love to hear your experiences and thoughts.

Chronic illness changes many parts of our lives in so many different ways and sometimes it’s embarrassing and difficult to discuss those changes.

Ive had a message this week asking about this subject and I realised what a taboo it is to talk about how chronic illness can and does effect relationships, yet it must be something that so many are dealing with.

I hope this can spark a discussion that could help so many.

✌🏽 & ❤️

Sam xx

When everything sucks, build a den

I am struggling right now with pain and everything feels kind of in limbo as it feels like  there’s so little I can do other than wait for my surgery date. It’s getting me down and then that brilliant husband of mine just made it all a little better. I had the day off work as I’d swapped days with a colleague and so he decided to take the day off. And readers, he built me a den.

Gathering sheets and string and safety pins, candles and snacks and the telly, he built me a bed den for us to hide in all day and it was heaven!

Build a den in bed

Building a den

It was just what I needed, to turn my bed which had begun to feel like a bit of a negative place of illness and pain into the most perfect hideaway for the two of us. (Well two plus two dogs and all the kids who came to hang out throughout the day!)

It was a lovely thing to do but more than anything else, just having him to myself for the day was the best. We are both so busy, he is self employed (running a photography business, an arts company and a festival!) and is constantly on the go, always working and rarely has a day off. I work three days a week for Scope and also have a radio show once a week. We have three teenagers, two dogs, a cat and 4 chickens and fitting in a chronic illness that often throws all that schedule out the window makes life a bit manic at times.

And so to have a full day of being together with no work has been pure joy. Just hanging out, talking, laughing, watching TV, reading, kissing, having that rare time when it’s been me and him.

Sometimes we wish for big things, a bigger house, more money, flash holidays or fancy cars. Sometimes we get caught up in life, working, chores, paying the bills, scrambling around just trying to make everything that needs to happen, happen.

But sometimes all we need are the simplest things that bring us joy.

And that Cleasby brought me joy ❤️

You can watch the video here.

✌🏽& ❤️

Sam xx

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic. You have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood. Then they either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery. It is an assessment to check whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. Now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

Mind/Body connection

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

Feeling scared

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

✌🏽& ❤️

Sam xx

A day in my life

I thought I’d give you a glimpse into a day in my life when I’m presenting on the radio for the BBC.

If you don’t know me, I have an ileostomy because of Ulcerative Colitis and two hernias, I’m awaiting surgery to repair these and it’s going to be my 8th operation.

I’m struggling a lot with pain and fatigue and so it’s tough to be working right now but I’m plodding through and I love being on the radio so much! I talk about managing fatigue, counting spoons and weighing up whether I can take painkillers or drive a car.

You can watch a day in my life here.

You can find my usual weekly show Nowt So Strange As Folk here and the show I covered here.

Enjoy!

Sam x