image of wires and tube in a neck after surgery with the words its been a while

Oh hi! It’s been a while!

Hello everyone, I know it has been a very long time since I wrote a new post on here. I have started so many times, there are many sat in my drafts folder that I just couldn’t hit post on. I am going to try again and attempt to explain a little of what has been going on.

Firstly, let me just say thank you to everyone who has kept up with me on Facebook and Instagram, also to the many people who still are reading my old posts here. Also a big thank you to the people I meet in real lift who read my posts and have such lovely comments.

So, what has been going on and why have I not been blogging for the past year…

In February 2020 I had a big surgery and things didn’t go too well. There were lots of issues post op and then I ended up with an Acute Kidney Injury and my kidneys were failing. You can read about it in the link above, we then went into lockdown when Covid hit and the world turned upside down. I posted a little about it here

“I feel so lost at the minute. This time last year I had a job I loved, I had my own radio show on the BBC, I was blogging and I thought my surgery had been successful and the future felt bright. Right now I’m recovering from 9th surgery. I have no job, the radio show has been put on hold due to corona and I just feel like I dont even know who I am any more. The one thing I’ve always loved is writing. But I have lost my confidence even with that. I try to blog and just stare at the screen. I just have lost it. “

April 2020

We trawled our way through Covid, I started therapy after being diagnosed with PTSD and though it helped, it also brought up a lot of past trauma. I tried to do what I have always done, write about it, explore those feelings, try and figure out what I was going through and how I could make it better. I spoke about family matters, and I was thoroughly told off and judged for doing this. I can see in hindsight that it felt too personal and upsetting, and that it wasn’t the right call, but the backlash was quite awful. This really effected me during a time where I was going through PTSD and so much trauma and it made me scared to write.

My health didn’t improve after the 2020 surgery, and in November last year I was admitted to hospital. I had been in agony for months and it had gotten to the point where I couldn’t eat, I lost two stone in 6 weeks and it turned out my intestine had moved into the hernia and got trapped. I was admitted to hospital and put on TPN as I was malnourished and though I needed surgery, my body was too weak to cope. After four weeks in hospital on TPN and other medication and treatment, I had surgery at the beginning of December 2022, it was a big surgery to try and fix the hernia and another full abdominal reconstruction. I woke after a 7 hour surgery and immediately didn’t feel ‘right’, I was in agony and having chest pains, I didn’t feel well but I had no idea what was to come.

The staff were incredible. And they soon realised that my bowel had perforated after the surgery, it was leaking into my body and I had developed Sepsis. A team suddenly was surrounding my bed, they were explaining to Timm and I what had happened and that they needed to take me immediately into emergency surgery. I was already exhausted, in pain and not really with it, I just remember there being so many people and I had to go there and then, I asked them “Am I going to die?” He said “We are going to do everything we can, but you are very poorly, you need to say your goodbyes”. Shit got serious. They wheeled me away and Timm kissed my head, we said I love you and the doors closed behind me leaving him stood in the corridor.

I woke up days later in Intensive Care. They had managed to fix my bowel but had put me into a medically induced coma, I was sedated and had a breathing tube in my throat. I had machines and tubes and wires attached to every part of my body keeping me alive. It was terrifying. Timm was sat by my bed, he looked like he had aged ten years since I saw him last. That whole time is a blur and honestly, this is the most I can manage to talk about right now. It was hell. It was the worst days of my life, and probably the worst of Timm’s.

Eventually I was moved from ICU onto a ward where they were still battling to fight the Sepsis, I was still on TPN and having multiple antibiotics every day to try and get on top of the infections. I couldn’t get out of bed, I had 6 drains in my tummy and so many tubes and bags, I couldn’t even sit up without help. I then caught flu and a hospital acquired infection called VRE (Vancomycin-resistant Enterococci). I was moved into a private room and everyone who came in had to wear apron, mask and gloves. At a time when I needed contact, I had never felt so lonely. Then Timm caught Covid and couldn’t visit at all.

It is incredibly hard to write about this. I can’t go into details, it is just too hard. I am shaking and feel sick just writing this, I think I have just tried to forget it all. I was finally allowed home in January, eight weeks after I had first walked through the doors, eight weeks of being an inpatient. Eight weeks. I had been allowed day leave on Christmas Day. I came home to Timm and my babies. But honestly, I barely remember it, I slept through most of the day and I cry every time I think about Christmas now. That is all I can say.

I came home, but I still had so many infections. I had to go to hospital every day for IV antibiotics through my PICC line. Timm then learnt how to administer them so that I could stay at home, as every day was agony getting to and from the hospital and it wiped me out for the full day. So then he gave them to me every day at home and we only had to go in once a week for blood tests and to collect the next weeks meds, syringes and all the stuff that goes with it. We did this every day till the end of April.

In April I had to have another surgery. The mesh in my tummy was the cause of the infections that we couldn’t shift with antibiotics and so they removed it. I had another couple of weeks of IV antibiotics and then eventually in (I think) the beginning of May, they removed my PICC line finally and I went onto tablet antibiotics.

Since then, I have been healing. Physically healing, but mentally and emotionally I think it is all blocked up in there. This is the first time I have tried to even lay out the timeline and go through the hell of the past 8 months. I am not ok. Timm has been through hell and back watching it and being there for me. He has done everything. He is everything.

It is times like this where all the shit in the world has hit every fan in the world that you take stock, you are grateful for the love and support of friends and family. It is the time where you realise who is there for you. I am so lucky to have an amazing husband who was there every damn step of the way, to have friends who were incredible, who looked after my kids, fed my family, was a support system for them when I couldn’t be there, who called and text, who visited and listened and loved and were just there. My sister in Australia called and messaged constantly, she was my night shift. My aunties who visited me and the kids, who cooked for them and brought gifts. Our friends who send weekly videos of their babies to make me smile. Friends who were just there and were amazing. Timm and I are so lucky to have so much love in our lives.

It has been the toughest year of our lives. But we have come through it.

Let me tell you about some nice things though, so its not all doom and gloom. Timm and I graduated this year, how on earth we managed to get through our final year when all this was going on, I have no idea! I think it just gave us something else to focus on, something other than medical crap and hospitals, something that brought us joy. I made all my work in hospital and used the experience to create my final exhibition. Ill post about that separate, but I only went and got a First class degree with honours in Fine Art!!! And Timm got the same in Film Production. We are both so proud of ourselves and each other!

This year has made us both focus in on who and what matters. On the people who love us and who we love. On the people who were there for us when we had nothing to give back. On what brings us joy. On how fragile life is. On what our future holds.

Mentally I feel like I have been in a tumble dryer, everything is so jumbled and staticky, I am anxious and low, I am masking so much and just shoving it in the bottom drawer, but man, that drawer is looking fit to burst. We are both a bit shell shocked I think and we need time and space and nurturing to resolve things and move forward together. I was offered and started therapy but honestly it was too much too soon. I had two sessions and it was hell, I couldn’t cope with it at that point. I am a huge advocate of therapy and highly recommend it, but it needs to be at the right time for you.

So why now? Why am I even writing this?

Well, I feel pretty empty right now, I have come through this trauma and survived, I have finished uni and so I feel like I should be on top of the world! But in reality, I still feel lost. I don’t know who I am or what I can do any more. I have lost so much confidence, I have been applying for so many jobs and it is a tough world out there now! I felt like this blog was done, that I can’t write anymore, that any spark of confidence I had in my writing had died. I felt I had nothing more to give.

Then I went to Tramlines festival this year, and I met a couple coming out of the accessible toilet. “Sam Cleasby?” she said. I panicked, thinking why don’t I recognise this woman?? She told me her husband had a stoma and they read this blog, she said lovely kind words and told me how much it had helped them. We hugged and said goodbye and I walked away feeling a bit dazed. I remembered why I started this blog and realised that it does still help people.

A week later I went to the Pain Clinic, after my appointment, the nurse said to me “Does your badge say So Bad Ass?” I looked down and realised it was on my old dungarees holding the strap together! She asked if I was the woman who wrote this blog and told me she had one of my posts (Letter to the tea lady) printed out and stuck on the wall of her desk to remind her to always remember the person behind the patient. I was gobsmacked.

And so it felt like the stars were aligning to tell me to get myself into gear and just jump back in and WRITE. So here I am.

I am going to try and write more. Though this has been truly difficult to write down, it has felt like slipping back into a comfy pair of slippers and I remember why I do it. I still have doubts and fears, the internet world can be a nasty place, with so many people wanting to write nasty, mean comments and messages. But there are so many others who are kind and lovely and who are struggling, so if I can write down some of the thoughts in my brain then maybe it will make it all feel a little better for both of us.

Thanks for reading and I am sending you all love and peace

Sam xx

19 replies
  1. rhonda
    rhonda says:

    Welcome back in so many ways. You are a true Warrior!!!!! You have been missed and you do make a difference to everyone who knows yiu abdcteads your blog. Take care of yourself and sending constant positive thoughts your way!!!!!

    Reply
  2. Dave Pawson
    Dave Pawson says:

    Becoming a well known writer Sam (and Timm near to qualifying as a private nurse? Well done Timm).
    Best wishes to you both

    Reply
  3. Jo
    Jo says:

    Welcome back Sam! Sorry you’ve been through the most traumatic time 🙁 reading this blog helped me so much before I got my stoma. You also kindly agreed to take a phone call from me as we have a mutual friend. I remember asking how many times you emptied your bag and you said after a while it just becomes second nature and you don’t even count/realise. I’m 7yrs into having my stoma and the things you said to me make so much sense now. I was anxious and worried and our conversation meant to me. You deserve some good times now!! x

    Reply
  4. Mike Kelly
    Mike Kelly says:

    OMG! Someone else who has gone through what I have started to go through and continue to have complications.
    I had an encolostomy done in 2000
    In 2019 I had a seroma form above an abdominal mesh. I was being regularly aspirated at Central Middx. In Jan 2023 One of these aspirations appears to have caused an aortic artery bleed. To track the bleed I had a CT. with contrast. I am diabetic and was on Metformin which contra indicates with contrast. I was told I would die without the contrast so agreed. I then went into acute kidney faikure, and liver failure (My ALT reached 13000 and my kidneys had actually closed down). I was placed on dialysis for 3 days when I was told the bold in the abdomen had caused my ureters to block. So I needed a bilateral nephfrostomy. I was in ICU for 18 days and a general ward for a further 4 weeks.

    Since that release, because I also have Spina Bifida and am in a wheelchair, I was kept on bed rest for 3 months. At that point I was readmitted to hospital for IV antibiotics for an acute infection in the kidneys. It was also established that I had a pseudomonas and resistant E coli infections. One of which contaminated my abdominal mesh.
    I say I continue to experience your issues because I have been told by a reconstructive surgeon both at Charring Cross and St Marks that I need the mesh removed and a biomesh put in to told the intestines in place. Due to the strikes, I had one date cancelled already. The next date offered was 21 Sept. Subject to further disruption.

    Very glad your survived. You are an inspiration to millions.

    Reply
  5. Chantele bishop
    Chantele bishop says:

    So nice to read your words again. So sorry for what you have gone through, but don’t ever forget how amazing you are.

    So bad ass!!!

    Love you

    Reply
  6. Wendy
    Wendy says:

    I was just thinking about you! Just said to my flatmate this is the woman who opened the nations eyes and ears to stomas! Because you have done and said so much to break the taboo around the issue. You have been through a tremendous amount and Timm but you still managed to get a first in a degree! CONGRATULATIONS! That is some strength and stamina to get that amidst all the trauma of your health. GLAD YOU ARE BACK! Love to you both XX

    Reply
    • sam
      sam says:

      That means so much! There are so many people talking about stomas now, which is amazing, but when I first started, there was no one in the UK. It’s great to see that the taboo is slowly being shattered by so many x

      Reply
  7. Hanna J
    Hanna J says:

    I have no words for the hell and back that you’ve been through but all I can say is you’ve had more people than you could ever know cheering you on from afar and around the world. I am so hopeful that you’re on the mend more now and the next part of your post-Uni life can truly begin. What you bring to this corner of the internet is amazing and I’m very glad you’re back. I hope you can get into therapy a bit more and it helps you with processing all that has happened so you come out even stronger on the other side. We’ll all be here beside you, virtually at least, every step of the way. Much love always.

    Reply
  8. Jude
    Jude says:

    Thanks for writing the blog. It feels like it wasn’t easy to go over the trauma of the last year or so. I had an illeostomy op in 2013 so it’s been interesting and really helpful to follow your journey. I’m sorry you get some prats making nasty comments. Please know that so many more ppl appreciate your work and send good vibes. ????

    Reply
  9. Beth
    Beth says:

    Oh gosh, what does a total stranger say which does not sound trite?
    I am blessed with pretty good health for my age and when I read what you have gone through I just give thanks for that, because I have no support network who would step up for me if I were in your shoes.

    I am in TOTAL awe of you and your incredible family, especially Timm. You are right that this teaches you who matters, and who is really there for you.

    From one PTSD survivor to another – when you are reading, researching, doing all the amazing things you do can I suggest you look at C-PTSD. The “C” stands for complex and is a very different form of PTSD which can develop after prolonged trauma such as childhood adversity, domestic abusive, any longterm situation that the victim cannot escape from – like chronic illness. Whilst it is still PTSD it can require different “unpicking”.

    And please keep writing. And looking after yourself. xxx

    Reply
  10. Angela Turner
    Angela Turner says:

    Shit, Sam, you’ve been to Hell, hung around for a fair while then walked back very slowly, haven’t you? I remember reading your posts way back in the early days of learning to live with my own Homer the Stoma and they really helped me to bypass any shame that might have been lurking deep down and be proud of myself for the openness and honesty that grew from living with a stoma. I think your writing is very much needed, not only by the ostomy community but probably by yourself too? After all, it’s what you know and do exceptionally well. I also wonder if you’ve ever tried creative counselling? You are such a creative bod yourself and done with the right therapist, it might offer you a familiar, gentler way to access your deep-rooted complex trauma, if and when you’re ready for it. It’s lovely to see you writing again, take care and keep healing ❤️‍???? x x ????

    Reply

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