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Hospital update and feeling anxious and panicky

I saw Mr Brown yesterday and the plan is for yet another surgery, it will be in the new year.

I have two large hernias and they are causing daily, almost constant pain. One is behind my stoma and one is in the old stoma site.

I also have a 6.6cm cyst on my ovary that I’m not sure if it’s causing pain or not as my whole abdomen hurts so who knows what is what.

Mr Brown wants to bring a new surgeon in to work with him, he specialises in complex abdominal problems and due to having so many surgeries, I’m filled with adhesions and scar tissue.

Theyll also be working alongside a gynae surgeon to remove the cyst and possibly my ovary, so it’s all hands on deck!

I just feel sick that this is happening yet again, I’ve really had enough and honestly it doesn’t get any easier, every surgery gets tougher and tougher. Ignorance is bliss when it comes to knowing what recovery is like and I’m so anxious and scared.

Ive used up all my sick pay with having two surgeries this year so any time off work will be unpaid which is super stressful, I know I need time to recover but knowing it will effect our income adds more pressure.

Im writing this at 4am as I can’t sleep for worry. I’m also coming down with some bug as I’m hot and cold and coughing and feel crap but when you have a chronic illness sometimes it feels like you can’t take time off for “normal” illnesses.

I know I’m just having a middle of the night panic but everything just feels very overwhelming right now.

I just want to be well.

Im sick of being in constant pain, it’s so draining. I’m sick of taking painkillers every day though I’m relieved to get some better pain relief today from the GP. But it’s a constant weighing up of being in pain and being able to think straight and taking drugs and feeling dizzy and not with it.

Its the first time since I started working for Scope when I’m actually wondering whether I can cope with it all. I love my job but right now it’s causing me to worry. I worry about how my illness affects my team, I worry about whether I can cope and I worry that if I don’t work, whether we can afford to live the life we do.

Theres not much positivity in this post but as always, it really does help me to be able to blurt all this out here so thanks for reading and I hope that in speaking about the tough times, it helps others to know they’re not alone.

I hope things feel a little brighter when the sun comes up

 

✌🏽& ❤️

Sam x

Comparison is the thief of joy 

I read this quote saying ‘comparison is the thief of joy’ and it felt very apt this week as I have fallen into the trap of comparing myself to others.  And my joy feels completely stolen.

Having a chronic illness and facing surgery soon that will give me a ‘bag for life’ in my permenant ostomy is taking it’s toll.  Not only physically, but emotionally too.

I’ve been comparing myself to everyone. To her career, her body, her free spirit, her perfectness.  I look at my sad, broken, scarred body and then look across at other women and feel thoroughly shit. I look at women with careers who are so clever and educated and brilliant and then feel bad about my cobbled together earnings. I see women living the dream, travelling the world, doing what they desire most and then look at my calendar filled with hospital dates.

sam cleasby blogger
Mainly, right now, it’s the body image thing.  And it’s hard for me to admit this as on this blog, I’m all about the positive body image. But this next surgery is so final. It will create an ostomy that can’t be reversed and so I know that for the rest of my life, I will have a bag attached to my stomach that collects poo.

I feel sorry for myself. There, I said it.

And even worse, I feel sorry for Timm. Poor lad really got the short straw when he ended up with me… I told him this during one of my wailing, howling sobs that have taken place this week. He smiled and said he’d got the most colourful and exciting straw. (That’s why we love him!)

It’s so easy to say that we should be positive about our bodies. And I do know I’m lucky to be here, still standing, after years of illness and surgery. But it’s fucking hard to be surrounded by images of ‘perfect’ women and to be imperfect.

On a good day, I can celebrate my ‘imperfections’. My size 16 body that has curves and soft skin, my strong, thick thighs and great rack.

On a bad day, I see fat, I see stretch marks, huge scars, boobs that sit that bit lower than before. And I think about the addition of another ostomy and it makes me cry.

I compare myself to women with ‘perfect’ bodies and make myself miserable.  I sit on this fine line between being terrified that my husband will leave me and the idea that he probably should as he’d be better off without me.

I think about how the man I love most in the whole world is also the man that I cause the most distress.  I worry about how much pressure he is put under every time I don’t feel well. I worry that it’s not fair to him. That he would be happier if I wasn’t here.

Having an illness or disability is fucking hard work.  It brings up so many feelings of pain and burden, shame and embarrassment. And these aren’t things that are easy to talk about.

But talk about them we must.

I don’t write them here to gain sympathy. I  don’t want anyone to feel sorry for me. What I want, is to share these shitty feelings because I don’t think I’m alone in this!  I want to share in the hope that if someone else is struggling too, that they will feel less alone.

sam and timm cleasby

I write because saying those words out loud are painful but the inability to speak them allows them to grow and mutate in your mind till they become bigger than everything else.

I write because I want to give others the courage to talk to their loved ones about how they feel.  To talk about the bad thoughts as well as the good.

It’s ok to speak out. It’s ok to be sad. It’s ok to be angry.

Logically I can dissect my feelings and come up with appropriate answers.  I know when I’m hating on my fat, I need to remember that when I’m feeling good, I love my body. And I really do! I remember that I need to speak positively about my body because it is listening and I know that when my head isn’t such a mess that I believe I’m a motherfucking goddess!!! Seriously, I’m fucking delicious.

I know I don’t need to be a size 8 to be beautiful. I know that my scars are interesting and are there because my life was saved.  I know that my stretch marks are there because my body grew and housed the three best kids in the whole world.

And I know that when my ostomy is back, that it will be there to improve my life.

I’m going to try to stop comparing my life to anyone else’s.  Not one of us is perfect. We’re all facing our own battles and we compare our worst moments with another persons highlights. We’ll never win that one.


Comparison is the thief of joy.  Remember that.
Sam x

The Unknown

They found this thing.  They called it a shadow and then slipped the word ‘mass’ into the conversation later.  I wasn’t expecting it, I had nervously laughed and chatted through the first part of the test and then the woman, the doctor, testing person, her, she went quiet.  She asked me to hold still and stopped talking about her daughter’s shop that she thought Id love.  She stopped making that casual conversation that makes the fact she is looking up my arse slightly less embarrassing.

There is this ‘thing’ in my rectal tissue.  I don’t know what it is.  She mentioned it could be an abscess but said I needed to talk to my consultant.  The mood changed really rapidly and I was so surprised that I just gathered my things and left.  I didn’t ask any questions or query what she was saying.  I didn’t do any of the sensible things, I just felt really hot and the word ‘cancer’ was all over me.  I could hear it whispering in my ear, feel it nudging me like I was walking through a bustling crowd of it.

She didn’t say cancer.  She never said the word.  I keep thinking Im imagining the whole thing.  She said she couldn’t say anything more and the consultant would look over the results as soon as possible and come back to me.

The logical part of my head is saying in a matronly manner ‘This, Samantha, is you over thinking it all.  It will most likely be an abscess or something easily treatable.  No one has suggested cancer.  Wind your neck in and stop being dramatic.”

I left the hospital and drove aimlessly, I ended up in a carpark at a shopping centre, driving round to find a parking space, only once I found one I realised I didn’t need to go shopping.  I drove to the old house where Timm was working and he chatted away.  He stopped and looked at me and said “Everything OK?” “Yeah!” I replied.

Then “No bubs, they found something”

His face fell.  I explained and he held me tight.  Said it would all be fine and we needed to not get ahead of ourselves.  I could feel his fear in his pounding chest, it was banging against mine giving away his anxiety whilst his face and words were soothing and calm.

I did a bad thing.  I took a photo of the screen when she left the room for me to get changed.  She had even asked me not to when I had asked if I could – “The consultant needs to see this first” she gently explained.  Then I did a lot of bad things.  I googled and googled and googled.  I dismissed the need for years of medical training and diagnosed myself online.

I know this is bad. It is ridiculous and if I were hearing this from another person I would tell them to STOP FUCKING GOOGLING.

You know the funny thing is, that the ultrasound of a rectum is surprisingly beautiful.  It looks like a lunar eclipse surrounded by galaxies.  It looks like a black and white Van Gogh sun.  It looks a lot nicer than you would imagine…

Today I am losing my mind thinking about what it could be, and so I called my consultants secretary only to be told that he is away till Monday and that the results would take a day or two to get to him anyway.  She put me through to the clinic where Id had the test but they said the woman is also away till Monday.  I imagine them both together, sunning themselves on a Caribbean island drinking cocktails with their heads thrown back laughing.

And so it is a waiting game for this unknown.  I am telling myself over and over again that it all will be fine, that the chances are that it is an abscess or something that can be dealt with easily.  Im pushing the word cancer out of the front of my mind, cramming it into a dusty trunk hiding at the back of my skull that contains the clowns and frogs.

I am on the verge of tears.  Im so frightened.  I keep thinking ‘Are you fucking kidding me? Have I not dealt with enough?’ It is so easy to wind yourself into a state of panic, but the words I use to comfort me are becoming a mantra, when I feel the panic rising and beginning to swallow me I repeat “It will be fine” over and over again.

Perhaps it really is nothing, perhaps they will look at it and shrug, something totally treatable and all A-OK.  I feel that these bad thoughts of something sinister is just fanning the flames of drama, I need to stop that right now and not let my brain go into over drive.  Because at this minute, everything is ok, no one is suggesting the things that are flooding through my brain, only me.

And so I will wait till Monday and speak to my consultant then.  Until then I just have to try and keep that trunk locked up tight and not let my imagination run wild.

 

Sam xx

UPDATE – my lovely consultant dropped me an email to say that it’s “Highly unlikely to be anything but need to see scans” and to try not to worry. I’ll update again when I hear more news xxxx