The fear

People tell me I’m strong, I’m brave, I’m a fighter. But mainly I just feel afraid.

Being chronically ill takes away all the control in your life, it strips away all the things that make you you and leaves this husk of a being.

The last couple of weeks have been so draining, like the life in me has been sucked away. The surgery was a shock, though it was going to be planned, to have it dropped on me with days notice shook me to the core.

When I got home from hospital I picked up a stomach bug. I felt sick and nauseous and that feeling took over everything. I had stomach cramps that felt like the worst contractions and I was passing water from my stoma, I lost a stone in a week and I honestly felt like I was dying.

But it was the fear that was the worst.

Recovery one day at a time

I felt so afraid, I refused to let Timm call the doctors as I was terrified that they would make me go back in to the hospital and the thought of that was so overwhelming. I couldn’t stop crying, I couldn’t breathe, I had panic attacks and I felt as though I was losing my grip on reality.

Fear is such a strong emotion. A feeling that takes over everything else.

I lost independence and control and had to rely completely on Timm. I was afraid that I’d never feel any better than that again and the thought of that was too much to bear.

This led to the fear that I was too much of a burden. That it would be too much for Timm and he’d walk away. Though he never once did anything to make me feel that way, I think past experience of people I thought loved me walking away planted a seed of doubt that anyone would want to put up with me.

I’m afraid of missing work, I’m afraid of going back to work, I’m afraid that I’m screwing up the kids when they have to see me like this.

Im scared that I’ll never be me again, that I won’t be able to walk the dogs, to work in the allotment, to travel, to be free. I’m afraid that I’m always going to be a patient, a sick person, that I’ll be a constant visitor to hospitals and that my life will be a constant cycle of illness, treatment and recovery.

My nan passed away the day before I was admitted to hospital and so my recovery has coincided with a deep grief and mourning that hits me like a punch to the gut. It’s been a really tough couple of weeks.

I know this is a depressing post, but it feels better to get it out, to give it a voice and to take the power away from this feeling of fear and give me back some control over how I feel.

So though I’m filled with fear right now, I have no other choice but to keep going. I got a card recently and on the front it said ‘take it one day at a time’.  There have been days where even that was too much, I had to take it one hour at a time, fuck, sometimes it was one minute at a time!

And sometimes that it all we can do.

✌🏽& ❤️

Sam

3 MILLION VIEWS!!

When I started this blog five years ago, I thought it would be something my family and friends might read, I never thought it would be read all over the world!

Yet so bad ass has now had over 3 MILLION views and I am overwhelmed and humbled.

3 million views

I cant thank you all enough for reading, commenting, sharing and interacting with me on social media.

This shitty disease has almost broken me, but knowing that I can and have helped so many people all over the world makes it worthwhile.

I feel like my job in life is to help others, to talk about the taboo things to help others understand and embrace who they are and how wonderful and special they are.

Its a pure privilege to run this blog and I love it with all my heart, it has helped me to get through the past five years as much as it’s helped others.

I just want to say a huge thank you to every person new or regular reader, who takes the time to read the rambling words of an old bird from Sheffield.

✌🏽& ❤

Sam

Surgery number 7!

If you follow me on social media, you’ll know that I had my big op a couple of weeks ago, it’s been a really tough time so I’m only now just well enough to blog about it.

So a bit of background, I had developed a hernia in the incision of my old stoma site and had surgery to operate in March to fix this. After that operation, my surgeon told me it was worse than expected and there was another hernia behind my stoma.

Over the next few weeks, these hernias grew and developed and were extremely painful and getting in the way of day to day life and so the decision was made that I’d need yet another surgery to fix these.

Parastomal hernia

It was decided that I’d try and wait till after August for this op, both to give my body time to recover and also as we are going on an American road trip in August and I wanted to make sure I was well for this.

The pain was getting worse week on week, I had a weeks holiday at the end of May to have some time at home around my birthday and I ended up spending that whole week in bed in agony. My birthday was spent having a bbq with our two best friends in a quiet evening at home where I could lay down and rest. Beautiful but disappointing to feel so poorly.

My beloved nan also took a turn for the worse and so I was trying my best to visit and spend time with her.  On Sunday 3rd June, we went and spent the day with her, she was very tired and on medication but it was lovely to spend time with her and lots of my family.

On Monday 4th, I was in a lot of pain, I could barely stand and my hernia was really stuck out, the decision was made that I needed to get into hospital the following day and have emergency surgery. It was a huge shock and I was frightened about it all.

And then I got the worst phone call. My beautiful, incredible nan had passed away. We rushed straight to her house and spent a few hours with her, holding her, kissing her and just being in her presence. I felt everything crashing away from under me. I can’t say much more at the minute, it’s too raw and painful.

The following morning, Timm took me into hospital and on Thursday 7th I had my surgery.

I had repair of two hernias and resiting of my stoma on the left side. It was quite a long and complex operation as I had a lot of adhesions, mesh and scars to deal with. I believe it took around 5-6hours and honestly has been the toughest one so far.

Perhaps it’s my age or the previous scars etc but either way, this one has floored me.

It was a bit of a shock really to wake up from such a big op, I hadn’t been expecting it and I was still reeling from loss and so my head was all over the place. The first day was a haze of morphine, I had very low blood pressure but I was feeling ok.

The pain team came to see me and explained the plan in place for taking me off the epidural, I told them that I was quite scared as I knew from previous experience what a shock it can be coming off the epidural. I was assured that everything would be in place and I wouldn’t have any pain.

The following morning I was given paracetamol codiene and eventually Oramorph, I’d asked Timm to come in to advocate for me as I knew it was always tough coming off and getting it right. We were told I could have oramorph every hour and that I’d be fine. Happy with this, Timm left to sort the kids out.

The pain started to grow and I saw a nurse who gave me paracetamol, she offered codiene but said I couldn’t have codiene and oramorph together and so I requested the oramorph. She went to get it.

Twenty minutes passed and the pain was blooming through my body, I pressed the buzzer and was told they’d let the nurse know. Another twenty minutes passed and I was in tears, I couldn’t breathe, I was sweating and moaning. I pressed the buzzer and told them I’d take anything just please give me pain relief. Again they went away saying they’d tell a nurse.

Another twenty minutes passed. I was crying hysterically and pressing the buzzer. No one came. Another patient came over and said ‘can I hug you? You’re in so much pain and I can’t believe they’re ignoring you’.

Eventually the nurse came over, she asked what all the fuss was about. I said ‘please just give me the fucking drugs!!’. She was angry and said she didn’t have to be spoken to like that. I begged her ‘please just give me the drugs!’  She angrily jabbed me in the arm leaving a painful red lump and stormed away.

Ten minutes later she returned saying I could have another injection, she was fuming and said I was a disruptive patient. I tried to explain that I was in agony and I’d been promised that I wouldn’t be left in pain. That I was sorry I swore but I was terrified and the pain was too much and I’d been left for an hour. She rolled her eyes at me and was so cold and rude. I said she was being really uncaring and she just rolled her eyes and so I said that my husband was coming in.

Honestly I was in shock, I couldn’t believe that I’d been left in that state. It was less than 48 hours after a huge surgery where I have two big wounds and a new stoma. I was left crying on a ward for an hour whilst they ignored me.

After this, I was laid in bed sobbing. I was in shock, distressed and as the pain relief took effect I was shaking. My arm was red and swollen where she rammed the injection in and I felt so low and just not human.

You all know I love our NHS, I wouldn’t be here without it, it’s amazing. But sometimes people let it down. This nurse was the coldest most uncaring person I’ve ever met. She looked at me like I was shit, she hurt me, she made me feel like I didn’t matter.

We complained and the matron came to see us, she was lovely and listened. She understood and apologised. I apologised for swearing, that i wasn’t like that but the pain was so much. She said it was totally understandable. We will be taking this further.

Thankfully I have a voice, and I have a husband to come and fight my battles with me but there are many who don’t and it’s for them that I must take the complaint further to make sure this doesn’t happen to anyone else.

Sam Cleasby surgery blogger

Once the pain relief was under control, the rest of the stay in hospital was quite normal. Timm came every day, he was my hero. I was struggling as I had no appetite, but the nurses were wonderful and really supportive which was a relief after such a poor start.

My blood results weren’t great though and there was concern about infection but then they dropped to within normal limits and I was let home on Tuesday 12th June.

Sam and Timm Cleasby

As far as we know, the surgery went well. I have a large scar up my middle and the old stoma site has been left open and is being packed every day by the district nurse. It’s a bit of a shock to see a big hole in your tummy though!

This has ended up being a super long post and so I’m going to end it here and I’ll do another post about recovery at home AKA it all goes tits up and Sam thinks she’s going to die… (spoiler, I obviously don’t die)

Adios!

Sam xx