Friday, 26 November 2010


Susan! Susan! Wake up, it's ll over."

[So tired. Not yet.]

"Susan!, Susan!

[Who is that?]


[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]



A cold hand takes mine and the last wisps of that other place shoot suddenly away. I find the scream is coming from me.

"Susan, Can you score your pain out of 10?"


Involuntarily, my mouth forms a new scream, but it chokes off in my throat. There is a burning, searing, terrible, pain ripping through me. I realise that every act of wakefulness sends a wave of white-hot agony in sickening spasms through my body. I try not to even blink.

Dave is here now, and I drag my eyes to meet his, hoping that the look alone could speak for me. What had happened? Why does it hurt? Where am I? Please, please, please make it stop.

We are rushing through corridors, every rattle and knock of the bed bringing fresh horror, Dave grasping my hand and almost running alongside to keep up.

The bed stops and a nurse is there. She's holding an ice cube and whips my covers back quickly. She presses it to my stomach and the severed nerves shoot and shock in protest. "Tell me when you can feel the ice cube Susan."
Quietly, I hear myself gulp "Now." She presses the other side "Now" and each thigh, "Now. Now." and on down my legs to my feet.

She looks at me strangely. "Try to calm down now Susan, getting yourself worked up won't help."

I stare back at her in wonder, not quite sure what she's meant.

My Mum is there now, too. She looks shocked and terrified, tears brimming in her eyes. Dave is grey and shaking.

The nurse has gone and I force myself to think through the nightmare.

I've had surgery. They'd taken me down some time after 2pm and it was 9ish now. I've had surgery before and it didn't feel like this. I'd been given morphine for my first op, but it hadn't agreed with me - causing me to lose consciousness. What's more, it hadn't even worked for the pain. This time, they'd persuaded me to have a fentanyl epidural, assuring me that it wouldn't have the same effect. I should be numb from the waist down, but clearly that wasn't the case.

Cautiously I try to lift my hand to see if anything is numb at all. Tensing the muscles in my arm tenses the muscles in my abdomen and I convulse, gagging against the pain and sending all the other nerves into a symphony of protest. I take a deep breath and force myself to feel my abdomen, down, to my legs as far as I can reach.


I manage to whisper to Dave that it isn't working and he run's back to find the nurse.

He's back, apoplectic with helpless rage.

"She won't come!!" She says you need to calm down, that you're giving yourself more pain because you keep shouting and gagging."

We are dumbstruck. No-one says anything for a moment. My Mum is crying, Dave seems unsure whether to stay with me or run back to the nurse. My head starts to hurt and I start shivering, every shiver rippling my muscles and giving me fresh convulsions of pain.

For the next hour or two, we exist. A bizarre routine of telling the nurse I am in pain every time she comes to take my 15 minute obs and her replying that I just need to calm down. She says she's called a doctor, but he could take hours to come and I ought to try to get some rest if I wanted to get better.

At about 11pm, she comes into my curtained cubicle and tells my Mum and my Dave that they have to leave. They are disturbing the other patients. In chorus, they both answer in furious whispers that there is no way in the world they are leaving until I'd seen a doctor and my pain had been treated.

To our astonishment she threatens to call security and in the end they have no choice but to go.

Now I'm on my own. It's dark and I'm frightened. The only sounds are the beep-beep-beep of machines and my intermittent screams.

I press my call buzzer but nobody comes. When I can spare any energy to notice, I realise my head is now splitting and I remember where I've had this kind of feeling before. I'd got a headache like this the last time I had morphine, and when it had reached the level of unbearable, I'd lost consciousness.

Finally the nurse appears to do my obs, which must have changed to hourly. I dredge up every last drop of courage and control and speak to her, quietly but urgently.

I tell her that morphine doesn't help with pain for me. I tell her that the epidural isn't working anyway for some reason, but that if she didn't get a doctor very soon, I was going to lose consciousness and need a crash trolley. I beg her to take me seriously, but she doesn't even answer and walks away.

Silently, I sit alone, crying, but so terrible is the pain that I don't even sob. Tears just brim and then fall down my cheeks, slowly dripping onto the sheet. I try to stay perfectly still. I wonder if I will die, here, tonight, alone and in agony. My buzzer is lit, but the nurse never comes.

It's 1am. I've been living hell for 4 hours and I can feel I am drifting away. My eyes keep falling shut until I find myself starting awake, waves of searing, burning pain resenting the jolt.

At some point I realise the nurse is back, but she seems a long, long way away. I know I should beg her again, try to make her understand, but I can't remember why it was so important. Suddenly she yanks my head up off the pillow and seems to be tying something round my head. This unexpected twist is enough to stir me a little and I realise she is blindfolding me with an ordinary, winter scarf.

"I'm going to try the ice-cube again Susan, tell me when you can feel it." She plays a morse code of No. No. Yes. Yes. Yes. No. On my skin. Sometimes I feel it, sometimes I don't. Perhaps she is playing tricks with me -  a kind of blind-man's-buff for power freaks.

She's taking off the improvised blindfold and as I blink to clear my eyes, I see her face has changed. She looks pale and panicky. She asks me to score my pain out of 10 and somehow, through numb, cracked lips, I manage to whisper "11".


"["Susan! Susan! Wake up, it's all over."

[So tired. Not yet] 

"Susan!, Susan!

[Who is that?]


[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]


I try to see where the voice is coming from and carefully moving my head to the right, my eyes focus on a friendly house-officer I'd bonded with previously over a shared love of travel. I was so grateful to see a friendly face, I sobbed and smiled all at once. 

"You gave us quite a fright there Susan, what happened?

I haven't got a clue what happened and I'm not sure why I'm waking up again. I tell him about the morphine and the epidural and the blindfold and the knowledge I was going to lose consciousness but not being able to convince the nurse. He doesn't know what to say.

In the end he composes his face and settles for a cheery:

"You popped off for a bit there Sue, glad to see you back."

I supposed that I would be glad in the long run, but given the pain, at that particular moment I'd have preferred to stay wherever it was I'd "popped off" to. I tell him the fentanyl in the epidural is not only not giving me any relief from the pain, but that it is what caused me to crash. I tell him he needs to stop it from steadily dripping into my system and find me a pethidine pump in stead.

Stepping back for a moment into the horror film farce, he tells me that only a consultant can authorise the change and I will have to wait until morning.

I Grab his arm and make him look me in the eyes. 

"Listen, either you pull this fentanyl drip out of my back or I will. 
If we don't, I will die.
If you leave me in this kind of pain, I may die anyway."

He looks unsure, then strides away - long determined steps thudding reassuringly down the ward. I say a prayer that he will save me.

In moments he is back. He has a syringe in a little cardboard tray. Alongside, there is another syringe - the biggest I have ever seen. A nurse follows him. (though not Bitch Blindfold this time.) She is dragging a pump attached to a drip stand. 

Doc-Buddy unscrews the little cap on my venflon and pushes the liquid in the first, smaller syringe slowly into my vein. Immediately, I feel a warmth and a comfort and a ray of hope, spreading through my blood, easing and soothing like magic. 

He takes the enormous syringe and installs it in the pump. In a series of beeps it starts to whirr and he gently closes my fingers over a remote control with a glowing orange button. 

"Press it when it hurts - you can't have too much, it's timed out to 5 minutes. Try to build it up for an hour or so, but I've given you a massive bolus, so you should feel better soon."

Tears spill over my cheeks again, grateful tears, tears of sheer relief. I'm drifting now, but thankfully this time, wearily and wrapped in a warm opiate cloud.

I manage to smile at him and whisper, 

"Thank You."


  1. Sue, I came across your blog by chance today while trying to find an explanation for my girlfriend's repeated losses of consciousness - we concluded it was a blood-pressure thing linked to her fentanyl patches and she changed to buprenorphine, but it has started happening again after a brief window with no episodes. Please could you either contact me or point me at any information on your adverse reaction to opiates so I can see if it might be the same thing. After 6 months with no explanation from any GP or specialist, we are a bit fed up wit it.

  2. Peter - I'm not surprised you're fed up!

    Obviously, I can't give you advice - I have no medical qualifications, but I can certainly tell you what I learnt from my experiences.

    Firstly, I take it the blackouts aren't a part of her condition?

    Secondly, there is not a great deal of difference between fentanyl and buprenorphine - they're both morphine derivatives - so I would have thought if one gave her problems the other would too.

    Tramadol and Oxycontin are not morphine and do not convert to morphine, so I suppose she could try one of those and see if the blackouts stop.

    Opiates can slow breathing, so I would check it isn't exacerbating an underlying problem, like sleep apnoea.

    If she has low blood pressure to begin with, then opiates can make it even lower as you know, so it could still be this, whichever opiate she tries.

    Does she get any other symptoms before she loses consciousness? This might give you more clues.

    Sorry I can't help more, but good luck. it can be a very long road finding the right analgesia, but you'll get there in the end.

  3. Apologies if not relevant, but your girlfriend isn't on NSAIDS as well is she? Just that a friend of mine has similar reactions to Diclofenac.

  4. Sue, this is a superb post, should be required reading at medical & nursing school! Are you able to tolerate oxycontin? Although I had problems with it, it also gave me back years of reduced pain & improved quality of life BG Xx

  5. Sue!!!!!!!!!!!!!!!!!!!!!!!!!

    Wow! You got an article in the Guardian! I am sooo impressed!

    WELL DONE :) :) :)

  6. BSS - Oxycontin is the one thing I have a glimmer of hope about. It didn't make me ill, but it didn't work for the pain either.
    I saw a brilliant pain specialist last year who seemed way more clued up than most. He explained to me that if you have to take one particular opiate fairly regularly, over a period of time, it blocks your receptors to other opiates. I need a good three or four months for pethidine to get right out of my system apparently before I should try it again.

  7. Haha!! Thanks Eoin, I'm a bit impressed myself, lol. I keep meaning to post it here, but I've been too busy.
    By the way, you were right last night - a 3 point bloody Tory lead.

  8. Hi Sue,

    I'm a UK medical student and was linked to this by BenefitScroungingScum - absolutely amazing brilliant writing and I'm so so sorry that you weren't listened to and that you had to suffer because of that. I will most definitely be suggesting that all the med students I know read this because I think it's so important for them to see what a difference listening could make.

    Thank you so much for posting this.


  9. Truffle - I am keeping a little notebook especially for comments like yours. It's a beautiful little book in turquoise and gold.

    It is just for comments from medical staff who say that something I've written will help the way they relate to patients.

    If just one nurse or doctor says they've learned something from my posts, I'll be thrilled.

  10. Hi, I'm a nursing student, I was directed to your blog by Truffle. Ive got to say that I'm utterly ashamed of what that Nurse did to you.

    I really hope that there is a way of renewing your faith in Nurses. I feel that the nurse you met was a one off, well at least I hope.

    You really show how important it is to listen, its only the patient after all that knows how they are feeling.

    I hope you have not lost all faith.

    All the best

    Baby xxx

  11. Baby - Don't worry, I've had some incredibly special nurses too, there are very few like the one above.
    I haven't lost faith, and the fact that so many student nurses and doctors like you feel moved to comment makes my faith grow daily.
    There are obviously lots of compassionate young people coming into medicine and I'm delighted.

  12. Sue,

    Intriguing post, my other half used to take a lot of trammie (as we call it - BTW, as a drug it is likely to be a lot better known soon as there is a new series starting on TV called "Frankie Boyle's Tramadol nights" ...) and had never had these problems, but her GP was concerned at the amount she was taking and so suggetsed the patches. The 25ug ones made her a zombie, so she moved to the 12ug ones which dealt well with the pain. Then about 6 months later the blackouts started.

    I hadn't realised that trammie was a qualitatively different drug - I shall explain and see if she wants to switch back to trammie as an experiment.

    Thank you so much - you have already been more help than half the quacks (and I use the term advisedly!) she has seen.

    In answer to your question, she has MS and RA, and the blackouts are not part of either condition.

    To answer someone else, she does not use NSAIDs apart from a gel rub as they do not co-habit well with Methotrexate.

    Thanks all for your thoughts.
    I shall see if

  13. As far as I'm aware, Tramadol is an excellent long term option. It is certainly the first drug of choice here on the bowel ward and they always try it first as it's not addictive (I believe, remember I'm not a doc!!) and has few side effects.
    I'm sure a thousand people have told you how good cannabis is for MS!! It's one of the few conditions I believe they've researched cannabis for and it was shown to be effective.