Six weeks since my operation and I am beginning to feel more normal, whatever normal means. The other day was beautiful and warm, unseasonably so for mid October, it could easily have been the end of August and so we went a little further afield for me to take my daily walk. I left Sharon at the cathedral in Wells, Somerset, put on my old faithful walking boots, a light backpack with a couple of drinks inside and went for a proper walk across fields and country lanes. I followed a pre-planned route of just over four miles at a nice comfortable pace which included a few slight ascents and descents. I wasn’t rushing and didn’t get out of breath so my blood iron must be getting back to it’s correct level. I’m a long way of a fifteen mile hike on the Welsh Coast Path that I am used to doing but I was really chuffed with myself and it felt so good to be out and walking. Every day I am fitter than the day before and the last hurdle, the follow up appointment with the surgeon is in a couple of days time.
I’m not sure if I feel nervous but it is a strange sort of calm, the sort of calm where there is a very slight niggling disquiet at the edge of my thoughts. The clinic nurse has led us into the consulting room and we wait for the surgeon to arrive. I already know, in as much as I can know anything that the lump that was removed together with the perforation and adhesions, was not cancerous. It was a benign tumour, a limpoma, a growth of fatty cells somewhere they shouldn’t be. The team looking after me were 99 percent sure of this before the operation and had told me as much, so this is what I know. Histology, that close microscopic examination of the cells and tissues for signs of malignancy, is just a routine protocol after any surgery like mine. Nothing nasty could possibly have been found or I would have been told by now. It would have been long before this six week follow up appointment that I would have been called in for further treatment. If this is what I know, why do I feel this anxious tension beginning to build as we wait? I think that when I decided to except all that was happening to me, I mentally surrendered to circumstances and therefore I had put complete trust in my surgeon. I am now waiting to see him and not one of his team because I realise I need a conclusive, definitive answer to this tiny remaining doubt, from him alone. He does not disappoint. He sits down, places my notes on his desk and delivers the categorical assurance I needed. He knew that this was the information I wanted to hear first, before anything else. The tension I had been feeling must have been far more than I consciously realised as my relief was substantial.
I have passed this final exam with flying colours. All is healing as expected, everything working as it should, within reason. I tried one of my favourite meals the other day, a chilli con carne, not too hot just a gentle reacquaintance to what I have been missing. I realised fairly quickly that it was too soon for spices, and spent the evening being reprimanded by an irate intestine for my impatience. Other than that, my bowels are being well behaved. I have been given a clean bill of health and released from the care of the hospital. I now am allowed to drive again and lift things as long as they don’t cause excessive strain. Usual activities and all that entails can resume without fear of causing any damage. I am advised that after another week or so I can gradually return to work. It would seem this nasty hiccup, this unexpected diversion in the normal journey through life is drawing to end. I am nearly back on track, nearly well, put back together and whole again except of course now missing around a foot of my large intestine, which as it had been causing all of my symptoms, I’m glad to be without.
I am self employed and therefore not able to claim statutory sick pay whilst I'm not working despite unfailingly paying national insurance contributions. I am also, if truth be told, not very good at financial planning. My bi-annual tax payment always seems to catch me out even though I know it’s coming. Therefore it’s not surprising that when having to take at least two months of work and as a consequence, having no money coming in, I hadn’t really been able to have anything in reserve to help cover the loss of income. Private insurance policies are ridiculously expensive and I'm convinced would always find a reason why any particular illness is not covered when it's actually needed. I am however very fortunate as I have the support of friends and family who have helped at this time, making sure essential bills have been paid whilst I attempt to make a claim through the complicated and convoluted benefits system for some assistance. Trying to do this has been a journey that has been both eye opening as well as extremely stressful. How people manage to keep going when they don’t have the network of friends and family that I do, I honestly don’t know.
We live in an area where the latest, ill thought out, change to the benefit safety net is being rolled out. Universal Credit, it appears is being trialled with what seems to be an attitude (and I may be being a bit harsh and cynical here) of “it doesn’t matter if it doesn’t work well, as it’s only the undeserving poor who will suffer.” A claim needs to be made as soon as circumstances dictate as apparently any payments will not be backdated to the start of my sick note. Actually it is no longer called a sick note as in the climate where style will always triumph over substance, it is now described as a fit note, the emphasis no longer about someone being too unwell to work but rather a demand of when will you be fit again and no longer scrounging of the state. I could be wrong about this as I have received a myriad of conflicting information, but as I write this it is six weeks since my surgery and I have yet to hear whether or not I am to get any financial assistance from the department of work and pensions. The first eight days of being unable to work was spent in hospital so it was not possible to begin my claim then. It wasn’t until I had been home for a few days that I felt I could try to begin the ordeal. After forty five minutes listening to a loop of Vivaldi and disingenuous assurances that I would be answered at some stage or if I wanted, could phone back later, I was beginning to flag and just wanted to go back to bed. Then a real human voice is heard, hurrah now we can start. Apparently I have telephoned the incorrect number and am given the one that I need to try again. By this stage my head is spinning as I’m still effected by a post anaesthetic fog and decide I will try again tomorrow. Next morning it’s spring again being played over and over, but only a forty minute wait on this occasion. This time I’m told that it is new the style employment support allowance which I should claim and they can’t do this over the phone but will send me the forms to fill in. I am on a merry go round of misinformation and incompetence having to answer absurd questions such as “what am I doing in order to find work,” when clearly I have a job but am just temporarily incapacitated by my health. I think my answer was “getting better!” After constant pushing from pillar to post, I am eventually given the next available appointment at the nearest job centre. This is for a date nearly two weeks away so I do hope they do backdate the claim. To my great surprise, the staff at the job centre were actually very friendly and nice, unfortunately they also didn’t seem to know how the new system works, but after much discussion between colleagues and supervisors, things were sorted and I now have an online universal credit account. Still more questions to answer, documents to provide and crucially at this point, no actual money from them, but I am ever hopeful. Time will tell!
Before I went for surgery, I did quite a bit of research into what I should expect. I like to know what’s coming and be prepared. I knew I would wake up in the recovery room with an intravenous drip and a catheter, I was ready for pain and sickness and I was well aware it would be a long road to get back to normal. I remember seeing two diagrams illustrating the process of recovery. One was how it was imagined, a graph with an X axis of time and a Y axis for improvement. A perfect straight diagonal line was the imaginary recovery, each new day along the X axis meant a little further up the Y axis of feeling better. This was juxtaposed with a diagram of actual recovery. The perfect diagonal was replaced with a meandering line, a squiggly up and down just like a snakes and ladders board, a few steps forward followed by a drop back down. But as I approached the four week mark after my surgery I was feeling quite confident that now I was on the perfect diagonal, so when I landed on a snake it caught me a little by surprise.
My long scar was healing as expected, I was following instructions and not lifting anything that weighed more than a small piece of tissue paper so everything seemed to be going to plan. The non dissolving dissolvable stitch had been removed from the sight of where the drain had been so even though it looked a little red, I was not at first unduly concerned. I felt a little niggling pain, but expected that to pass. Perhaps there was still a suture there that was hiding away under a little scab, irritating like a splinter that lies beyond the reach of tweezers or maybe it was just taking a little bit longer than expected to heal. I could feel something causing an annoyance, the sensation was similar to the last left over, non dissolving stitch, but nothing was obvious to see. It was a Saturday night when it began to get steadily more and more uncomfortable. It is Sod’s law that it would happen on a Saturday night, as no doctors are available and our nearest casualty department shuts at ten in the evening until the following morning. Unfortunately there are insufficient staff available to keep it open. The pain got worse and radiated away from the wound across my abdomen and even around to my back. Sharon thinks we need to get it checked out, it’s not an emergency so we will need to telephone the NHS out of hours service on 111. I’m sure it was a human and not a computer I was talking to but the questions I was asked at times seemed a little bizarre, as if generated by an artificial, not very, intelligence. I was eventually told that a doctor would phone within six hours and advised to take both paracetamol and ibuprofen for the pain. I pointed out to the call handler that as I was still giving myself a daily post operative injection of an anti-coagulant, I would avoid the risk of an unwanted bleed and stick to the paracetamol only. It’s just gone eleven, very late for us, so the phone is left next to the bed and we both try to sleep.
I actually slept quite well, the pain was lessening, and I was very tired. The phone rang at around ten past seven in the morning which woke us up. I’m quite glad it wasn’t within the promised six hours as I had managed a restorative rest and now feel a lot better. The doctor would still like to see me though, so an out of hours appointment is made for later that Sunday morning.
He is looking very closely with a bright light at the wound and it actually looks quite good, at lot less red and inflamed than yesterday. He has a little prod around with his fingers and Sharon, ever my advocate, asks him if his hands are clean. “Well, it’s not an open wound” he retorts and begins typing on his computer, hands still unwashed. “It doesn’t look infected and I can’t see a left over stitch so there isn’t anything that I can do” he says and then continues “but you should make an appointment with your own surgery tomorrow.” It is a good job that I do as the next afternoon as the nurse practitioner takes the dressing off she is confronted by a weeping, oozing infected wound. So now I am on a weeks course of antibiotics and hoping that they don’t cause me diarrhoea as my bowels were just beginning to get back to a degree of normality.
The nurse has made me an appointment to see the doctor later in the week to check the progress of the wound. When four days later I see the GP, she prescribes a different antibiotic for a further seven days. It is just as infected but she agrees with me that there may a stitch hiding away. “I can’t see anything for sure but I think you should come back in a few days and I’ll have another look.” So I go on applying a new dressing each day and taking the pills which are so huge I think she may have prescribed suppositories by mistake. On the next visit she is armed with tweezers, a stitch cutter and a determined look on her face. There is far less oozing pus and she believes she can see the top of a suture. Lying down, the action is outside my field of vision but I can feel the probing, pulling and sharp stabbing pain and then eureka, there it is, the offending centimetre length of surgical nylon held aloft like a hard won trophy. I could give her a grateful hug but decide against it and re-fasten my trousers instead.
I decided to weigh myself the morning before I went into hospital, and found that my liking for unhealthy food and possibly drinking more than was good for me of my favourite tipple, cider, had resulted in me being more than a stone overweight. I must also concede that my eating and drinking choices could also have been a contributory factor in the condition of my bowel. Armed with this figure of stones and pounds from before the operation, a week after getting back home, I thought I might repeat the exercise and get back on the scales. The extra stone had unsurprisingly gone! Perhaps I could try to market this as the next dietary fad, the “don’t eat anything, just poo and vomit diet”
By three weeks post surgery, my daily walks have increased to about a mile and some days I remain awake until bed time, although bed time is usually well before nine thirty in the evening. I am not needing either anti sickness medication or Imodium on a regular basis. The advice I have been given is to try to retrain my bowel. The technique is to wait until I really need to go before trying to poo. It is little like childhood potty training all over again only on this occasion I don’t have to sit on a small plastic pot in the middle of the living room floor looking for praise from an encouraging parent.
This is also the time of the maximum amount of frustration. When I was feeling terrible and weak, then there was no temptation to do anything more than I could manage. Now though, I am seeing things to do like making a cup of tea, picking up something that needs to be moved or emptying the waste bin. But I’m not allowed to lift yet, not even a kettle. The wound which seems to be healing so well also needs the time to thoroughly knit together all the way through the layers of abdominal muscle, and this is a task the body performs at it’s own pace and it can take six to eight weeks even if all is going well. Interfere with this slow process by putting to much strain on those muscles, could result in a long term weakness. I don’t want to find in a few years from now that some of my insides herniate out and need further surgery to be put back in. Nevertheless, sometimes I forget, and in an absent minded moment I attempt to do something and only stop when chastised by my ever vigilant wife. This is why she is still reluctant to leave me on my own, I am just like a small child and I still need adult supervision.
What I can and cannot eat at this stage is difficult to judge. There is a lot of contradictory advice but as a general rule I am to eat little amounts frequently rather than trying to consume big meals. Somethings are definitely off the menu for the first few months and unfortunately some these are the things I absolutely adore. Spicy food such as curry or chilli con carne, could irritate the bowel and likewise caffeine can have the same effect. Vegetables which can produce lots of gas such as cabbage and sprouts are also best left alone at this stage as it is wise not to eat anything which might cause flatulence and as I’ve already said, farts are not to be trusted. Still, as I don’t particularly like most vegetables, for me, there’s no great loss in avoiding them! One thing which I am consuming almost every day, are jelly babies. I have a very sweet tooth and also, an old friend who happens to have been a colorectal nurse for over twenty years, she has recommended these sugary sweet morsels of delight because the gelatine helps to bind everything together. Jelly babies or sprouts? No contest.
I am back in the waiting room of the GP’s surgery, I have an appointment to see the nurse practitioner who is going to remove the staples from my wound. I took an Imodium tablet this morning, this is an over the counter anti diarrhoea medicine and I try not to worry that the effects may wear off before I can reach a toilet. So far so good, I hope I don’t have to wait to long.
They are very good at my GP’s surgery and generally keep to time so before long I’m called in and lay down on the couch and expose my now bald abdomen. The post operative swelling which had made me look about eight months pregnant, is slowly returning to normal and now only has me still in the first trimester. Pulling off the dressing smarts a little, a bit like waxing the new shoots of hair trying to regrow but the staples being taken out is much worse. I loose count at around twenty, I think I deserve a “You’ve been a brave boy” sticker. Everything is looking good, there is no sign of infection and a new dressing is applied. She is also able to prescribe me more Imodium and anti sickness tablets so I’m hopeful that tonight there will not be a repeat of last night's toilet terrors.
When we get back home, I am again ready to go back to sleep. The little outing has taken more resources than I anticipated, but sleep is the great healer, the chance to repair and renew. Also the Imodium is still exercising it’s magic effect, but I’m still not taking any chances and make sure there is still an Incontinence sheet strategically placed on the bed before I lie down.
I return to the surgery four days later, I think it is better to finally remove the dressing here rather than at home. If there is a problem with the wound then I’m in the right place for any necessary treatment. Just to the side of the main scar, which seems to be healing really well, a small incision where a drain had been inserted has a dissolvable stitch which is not dissolving but beginning to pull quite tight. Expert hands deftly use a stitch cutter to cut the knot and remove the offending material. When I return home on this occasion the trip has not worn me out anything like as much as my previous visit, I don’t need to return to bed for a restorative nap until later that afternoon. Progress indeed.
It is good to be home. My own bed, my familiar surroundings and also my own germs. It’s not long after getting in through the door that I need to retire to that bed, the first trip in the car was exhausting. The anti sickness medication that was so effective in hospital had been prescribed on an as needed basis as opposed to a regular dose and I think because of this it was it not included with my take home medicines. This is unfortunate as on my first evening away from the safety of the ward, I am powerfully sick, loosing the little food I had managed to eat. It’s amazing but once the episode of vomiting is over, I begin to feel a little better. After the awful nausea is gone and I also manage to sleep throughout the rest of that first night at home. The noise and activity of a busy hospital ward has been replaced with the calm of my own bedroom. Even the local, usually rowdy seagulls are being very considerate and the little noise they make fails to disturb me. I can, unfortunately only lay on my back as it’s still too uncomfortable to rest on my side, but the familiarity is comforting and I sleep.
When I’m not feeling sick, it is easy to be overconfident, but being at home doesn’t equal being better. It is though, no problem to forget this obvious fact and convince myself that it does mean exactly that. I have been advised that even at this early stage, I ought to be walking about five minutes or so each day and as time goes on I will need to gradually increase the distance that I cover. The following morning we (Sharon won’t let me walk alone) head towards the sea front in the early autumn sun. This is a journey of no more than 200 meters. I am a practiced long distance walker, I’ve completed the South West Coast Path, Offa’s Dyke and I am part way through walking the Welsh Coast and yet that was a long, long, long 200 meters. We reach a bench and I have to rest and catch my breath, but what a wonderful place to rest, looking out to sea and feeling the warmth of the sun on my face. Tomorrow I will try to go a little further.
The second night at home and my bowels decide that now is the time to show me what they can do. At the same time the sickness returns with a vengeance. I wake in the middle of the night desperate to reach the toilet and trying not to spew up my guts all over the carpet. Sharon has very wisely bought some incontinence sheets to place on the bed and it turns out this was necessary as my bowels move faster than me. Soon I am sat on the toilet, it is around three in the morning, (we very fortunately have an on-suite bathroom,) I am painfully heaving into the bowl that I’m holding in my hands whilst below it seems a tap has been turned on and a constant stream of malodorous fluid pours out of me. I am feeling very sorry for myself. But even during this ghastly ordeal I am very grateful that I’m not on my own and that the disgusting diarrhoea that seems to have no intention of stopping, is coming from it’s natural orifice. Because of the skill of my surgeon, I have been very fortunate and it had not been necessary to give me either a colostomy or an ileostomy.
Perhaps I was a little naive, a little optimistic. I expected that with my surgery on Monday, I would be going home by Friday. This it turns out was just wishful thinking. The doctor who puts a stethoscope to my abdomen says he “can hear a little bowel sounds but the emphasis is on little” and then I begin to feel more and more unwell. My temperature rises and I am violently sick which is not easy when all I’ve had is fluids and a few tiny morsels of food. There is a danger of the join in the bowel not taking and leaking into the surrounding area so a CT scan is ordered. I’m put back onto clear fluids only, which as I can’t stomach anything else, doesn’t bother me at all. A new cannula has to be put back in my hand and a drip attached to make sure I keep hydrated. How I managed to consume the litre of disgustingly tasting contrast medium which was necessary for the scan, I don’t know but the intravenous anti-emetics enabled me to keep it down.
Everything happens so much quicker when you are an inpatient rather than as an outpatient. I am scanned and the results reported on in no time at all. Before long the doctor is talking to me behind the presumed soundproof curtains as I lie on my bed. The good news is the join in the bowel is holding but the bad news is the scan showed a large area of inflammation which they think may be pancreatitis. If this is the case it could have a detrimental effect on my blood sugars but they measure these and they are all fine. It eventually turns out to be gastritis which is treated with a magic medication which slows down the production of stomach acid. This little dip means that I end up staying in hospital for eight days rather than the five I had anticipated.
Most people wouldn’t see a successful trip to the toilet as the achievement that I do, but as I begin to feel a little better I sit on the toilet to pee (always sensible when you don’t have complete confidence in your bowels) and I am rewarded with an explosive expulsion of gas. Something a little more solid is soon to follow. Unfortunately this event was during visiting time and the acoustic amplification afforded by the wards toilet ensured my success was shared with as many people as possible. These small moments of triumph restore some of my self confidence and even though I know how well I have been looked after, it has been more than a week and I’m ready to come home. The doctors agree, I can go home, I’ve been in for long enough. Eager as I am to leave, it does take nearly the whole day to arrange everything. I need an appointment made with my GP’s surgery to have my staples removed two days hence and a bag full of medications to take out. At 4pm a porter arrives to wheel me away, which is good because I’m not sure I could walk the distance to the main hospital door yet. Soon I am ensconced in the car, pillow over my abdomen for protection and Sharon drives slowly (a novelty for her) out of the hospital and begins the journey home.
After a few days I am noticing that I am definitely feeling a little better. The intravenous morphine and fluids have all been discontinued and the very keen newly qualified nurse decides that I no longer even need the cannula in my hand. It is also decided that I am to be “T.W.O.K ed” This acronym stands for “Trial Without Catheter.” Not an investigation to determine if I am guilty of peeing on the floor but rather to check that if after a catheter is removed, no urine is retained in the bladder. It is the same young pretty nurse who pulls my curtains shut and puts on the rubber gloves whilst in an attempt to diffuse my awkward feelings, she chats about the weather. A catheter is held in the bladder with a balloon end filled with water, I am thankful she attaches a syringe and draws this fluid off first. I have heard of someone who forgot to do that once and only realised their mistake when the patient screamed in agony! Once the balloon is empty the tube is slowly pulled from the bladder and out through the penis. This is an organ which responds to this intrusion by wrinkling up into itself as if trying to hide and pretend it’s not there. I don’t need to worry that I may have had an inappropriate response to someone I have only known for a few days holding on to me in this intimate manner as any pleasure involved is solely derived from the pure relief that the catheter has been removed. Later, after a stinging pee in an actual toilet, a quick ultrasound scan of my bladder proves I have passed the trial.
The ward is a great leveller. We are a cast of mismatched strangers, united in our role as patients. It is also a place where the private world is made public. When the curtains are pulled around a bed no sounds are excluded. A group of doctors come to see Vic in the bed next to me and give him the news that his prognosis is very poor and nothing more can be done, we all hear his muted reaction. When Bob in the bed opposite sits on a commode behind his less than soundproof screen he has no need to be at all embarrassed by the rumbling echo from inside the pot and neither by the insidious aroma. It is a shared experience, a commonality we all have in one way or another. When I’m heaving that last bit of stomach acid into a receiver, holding on to my wound to limit the pain, I can feel the sympathy from everyone else. We eat together, or at least have the meals brought to our bedsides, I am not yet able to tolerate food. We sleep in the same room listening to the communal snoring and are all awakened at the same time. We all watch the same comings and goings, new patients arriving and the well returned to the world.
Arthur’s bed is in the corner. He has been admitted by the urology consultant as he has blood in his pee. Arthur is not a happy patient, in his early 90’s he is feeling weary. Even in the excessive heat of a hospital ward, he still feels cold, his urinary urgency means he can’t reach the toilet and his poor mobility leaves him frustrated. His regular refrain to anyone who will listen is “don’t get old”. Vic is very patient and does not respond because he of course would dearly like the chance to get old. Tim is wheeled into the ward on his bed from ITU, he’s still attached to every conceivable wire and tube but seems remarkably perky for someone who is as ill as he is. His demeanour changes when he realises that the one to one nursing he received on ITU isn’t the same here and it’s a while before anyone is able to come in answer to his call bell.
It is a busy place, cleaners who wipe every surface clean every day, the consultant with his entourage in tow flitting from bed to bed, phlebotomists like vampires on a quest for blood, physiotherapists assessing mobility and breathing and the kitchen staff collecting the filled in menu cards. It is a constant drama of activity and yet I find that falling asleep at any time during all the hustle and bustle is remarkably easy.
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.