It is only very vague memories that I can recall from that first night. The tightness on my arm as my blood pressure is monitored, ghostly movements by my side as drip rates are adjusted, but mostly I sleep until there is a blaze of intrusive early morning light as the ward is awakened.
The protocol now is to be up on the first post operative day, to begin mobilising as soon as possible, and so a very helpful nurse steadies me out from the bed and into the chair. I’m very conscious not to entangle the many tubes still attached and it takes some skilful adjustments until my catheter is safely hanging from the bed rail and my drip no longer beeping it’s annoying alarm. I’m still only wearing the theatre gown so she has very kindly put a sheet on the chair so the wipe clean plastic doesn’t stick to any bare flesh.
I can control my own pain relief, I move a bit, it hurts and I am able to press a button for a shot of morphine. The pump then locks and I have to wait a prescribed amount of time before another dose is allowed. The morphine makes me feel sick and light headed, maybe the pain is preferable?
All is quiet in the bowel, no rumblings or murmurings but a deathly silence as it decides to sleep perhaps in protest against being manhandled and cut apart. That’s fine as with my catheter in place I don’t need to worry about the huge trek that it feels a journey to the toilet would entail.
It is a strange experience being a patient. Many years ago I was a nurse, I have worked on surgical wards and been responsible for caring for people like me now. Even with my mind in a post anaesthetic and narcotic fog I am still watching what happens around me with a critical eye and I am reassured by what I see and the high professional standard of care I am given.
The daily routine of the ward carries on, people come and go, I go back to bed then get up again, I’m monitored and checked, asked about my pain and nausea, given medication and offered food but I have no appetite. People visit and I get tired and then the visitors go and I sleep and all the while I am on the journey to recovery, in a safe place as my body begins to heal and knit back together.
It’s a different awakening. Not like the gentle rise from slumber after a night of restful sleep, this is a disjointed mixture of consciousness and unconscious. Blurred fragments of reality confused with dreamscape which now as I try to remember, I realise I can’t tell apart. I did put my hand to my side to feel if I had a stoma, and I distinctly recall the sense of relief that I was unable to feel one. Or was that later when I was awake, I actually can’t say for sure. Time is meaningless, well at least for me. For Sharon who is waiting for news, it passes by in a different reality to mine. She was there in the recovery room, that bit must have been a dream as civilians aren’t allowed past the doors to the theatre suite, although it turns out she was there for a while as the surgeon let her in to see me.
At some stage I am wheeled back on my bed to the ward, but it is journey like most of that first night that I have lost to anaesthesia. I was told later I was in the recovery room for a long time as they tried to stabilise my pain, but that memory is fortunately also lost and now I have no pain, I don’t feel sick, I just need to return to sleep and I do.
I give my name to the receptionist and a nurse leads us through to the waiting room. I am back in the pre operative assessment clinic which also doubles up as the surgical waiting area. Rather than being admitted to a ward the night before the procedure, everyone booked for an elective operation comes here at 7:30 am to be seen by their anaesthetist, changed into a surgical gown and wait to be called. It is a surreal environment.
There are others here too, waiting to go under the knife and I guess the lady to my left is expecting a new knee as a cheerful young man in scrubs draws a large arrow on her shin pointing to the soon to be removed joint.
If ever a place needs to be somewhere of peace and calm then this is it, somewhere to mentally prepare for what is ahead. This strange room in which I have no idea how long I must wait, doesn’t seem to fit that bill. The television is on, perhaps it is thought that this will be a distraction, a dose of normality in a most abnormal environment. I am distracted but not in a way that can possibly help my gradually rising anxiety. Daytime television at it’s most inane bombards my fragile senses. Piers Morgan, full of his own self importance argues loudly about something no one else cares about and is followed by the contemporary version of Bedlam which is Jeremy Kyle and I am in no mood to visit the asylum for entertainment today.
I have had no specific bowel preparation, no heavy dose of laxative the day before to clean me out ready, but I am to have an enema administered just before to make sure the surgeon has a clear field of vision. There is however nowhere suitable, ie affording a degree of privacy and the close proximity of a toilet, which can be found and so I am escorted back through the long hospital corridor, holding on as securely as possible to my gaping gown, down to the ultrasound department, where a room with adjacent lavatory is available. I think I have moved beyond embarrassment, I know the routine for this, lie down on my left side, knees bent and prepare for something to force it’s way unnaturally into me. “Try to hold it for at least 5 minutes” I’m told. “After you’ve been to the toilet, make your way back to the surgery waiting area”. I am a little confused. They want me to walk unaccompanied back through all the waiting ultrasound patients and up along the busy corridor whilst desperately clenching my cheeks to avoid leakage, I am wrong, I have not moved beyond embarrassment. “Actually, it may be better if we bring a chair and collect you” the nurse concedes, and fortunately that is what happens.
Up until now, Sharon has been with me but now I must walk through the double doors where relatives cannot follow and climb up onto the pre-prepared table. This is the anaesthetic room, wires are being attached and needles inserted and I feel almost as if I’m an observer, watching someone else being prepared. Then the screen goes dark the show is over and time itself seems to stop.
5) Blood Tests and Scans
The consultant surgeon turns the monitor screen towards me and animatedly points out the various bits of my insides. My CT scan, (virtual colonoscopy) reveals all sorts of pertinent information but how he can decipher these swirling abstract patterns into anything other than a contemporary piece of monochrome abstract art is beyond me. “You have a very interesting abdomen” he tells me. Interesting turns out to mean a) something which he is very hopeful is not cancer but a large lipoma, a fatty non-malignant tumour which has the potential to occlude my colon and b) an inflamed perforation which he believes may be causing the bleeding and abdominal discomfort. Most surgeons it would seem, like to do operations, they relish the blade and the cutting into flesh and he tells me this with what almost appears to be a look of enjoyment on his face. I am therefore relieved and surprised that at this stage he believes we should wait a month, perform another CT scan and see if the hole in my bowel is healing on its own.
This is the process, the waiting, the rearranging of normal daily routines to accommodate the appointments for blood tests and scans, the time taken trying to find somewhere to park at the hospital and getting anxious not to be late to see the consultant. All the while the symptoms are becoming worse. Everything seems normal for a few days and then “shit!”, I need the toilet desperately. When I get there, undoing my belt and fly and nearly tripping over my jeans as I rush to sit down. My evacuation turns out to be a bloody, mucous clot. I dare not move, blood clots are like London buses, you wait for ages and then three big red ones come along at once. And now I also know what Jack Nicholson’s character in “The Bucket List” meant when he said “When you get older, never trust a fart ”.
6) Waiting for Surgery
It doesn’t improve. The perforation remains inflamed and does not heal. The as yet, still not definitively identified lump is now causing a constant, nagging discomfort. It’s not acute pain I just know it’s there. It is the unreliability of my bowel that is more and more of an issue. The days when I can go to the toilet in the morning before work and only need to visit again when needing to pee are now less frequent than those when I have a real and terrifying fear that I could actually shit myself. As yet the proximity of toilets and the occasional dose of Imodium have prevented this catastrophe.
My bowels have become the topic of discussion in a multi disciplinary team meeting, and the conclusion they reach is that surgery is necessary. The surgeon draws a diagram, he does this upside down so we can see it and I’m very impressed with his draftsmanship, that level of fine motor control is a good sign in a surgeon. He explains that although keyhole surgery is an option, he believes a larger incision would be more beneficial. He needs to remove about a foot of the sigmoid colon, including the lipoma and perforation. This is a delicate procedure, there are adhesions and inflammation and also a close proximity to important nerves. Yet I am resigned to this eventuality, I cannot continue needing to spend my life sat on the toilet or least always being within easy reach of one.
I do not have long to wait and I am given a date which is less than a month away. Of course this sets the alarm bells ringing, why the fast track? What happened to all those waiting lists? They must think it’s cancer! I am spiralling down into abyss of non logical conclusions, it really is an emotional rollercoaster. At the pre operative assessment clinic the following week, the not particularly engaged nurse informs me that the date is actually a week sooner than originally stated and then as I’m coping with the sudden rush of adrenaline this news brings on, she takes my blood pressure. Guess what? It’s quite high!
I also have to see a stoma nurse, a clinical nurse specialist, who advises patients should they need a bag to collect the bodies waste following this surgery. This happens in about 10% of cases and is usually temporary allowing the bowel to heal before another operation to connect everything back together. She is altogether different from my last experience. She is helpful and explains everything. She takes the time to listen and provide reassurance, my confidence is restored.
I know what they are looking for as I am fast tracked to a hospital appointment, there is one thing, one potential diagnosis which needs to be ruled out. Speed is now of the essence and my initial foolish delay in seeking medical attention now seems so silly. We have a wonderful NHS so I didn’t have to consider if medical insurance would cover what was to come. My reluctance to go to the doctor was purely out of potential embarrassment and not due to any financial consideration, although as I am self employed, that will come later.
In the more than twenty years since I was nursing, much has changed so I have scoured the internet for information and at this stage I’m not sure if this has helped or just added to my worries. It surely must be better to know and be prepared, after all no one wants to be caught short by the explosive effects of the bowel preparation they have given me.
I have to change out of my clothes into an easy access hospital gown and I become a patient waiting in a cubicle to be called in to the examination room. As it sit waiting, I am remembering having a large wound on my hand, stitched by a nurse practitioner in the A & E department a few years ago. That was a cool, macho injury, I could sit and watch the flesh being pulled backed together, numbed by lignocaine and remain stoic and detached. Of course I could, I was still wearing my trousers!
I am allowed to watch, there is a monitor displaying the progress of the camera as it makes it’s way up inside me. This distraction does not stop the discomfort but is fascinating to see. There it is, my bowel completely devoid of it’s normal content being negotiated by an intrepid explorer. Although I am not used to seeing the inside of a human body, the lump when it appears seems huge and I say as much. The nurse who has been up to now a reassurance tells me not to worry, and says everything looks so much bigger when seen on the screen. I know this already, my concern is it’s size in relation to the normal lumen of the bowel, it occupies most of the space and there doesn’t seem as there is much room for anything else. The doctor also seems surprised, he was expecting a small polyp, something he could snare with his scope and cauterise away. He withdraws defeated.
The good news is he doesn’t believe this to be anything malignant, he can’t say 100 percent but he is very confident. My worst fears are not realised, but I won’t be convinced until conclusive test results state categorically in black and white “negative”. Until then I can remain very optimistic. The bad news is I must now be referred for further tests and investigations, and so the rollercoaster ride continues.