WARNING: As in my previous blog, I occasionally use explicit language which you may find offensive. My intention is to make my point without sugar-coating my experience of being treated for cancer.
So, how did this loss of dignity manifest itself in reality, and what were the other less significant losses and gains I alluded to in the previous blog? I will start by answering the second part of the question:
LOSSES – Here were the main items I gradually lost after the operation:
- Lost exactly 1.0 kg of liver including tumourous as well as healthy tissue. Not impressed? What if I told you that the average male adult has a liver that weighs 1.5kg?
- Lost 11.5 further kilograms in fat and muscle tissue in a matter of one month
- As a result of the invasive operation, I lost the overall profile of myself. I no longer had a backside, leaving me with two deflated balloons dangling out of the base of my back. I also lost my man-boobs, leaving me with two further deflated balloons stuck to my chest. On the whole, when I stood up, I looked like a straight skeletal shape with no curves or contours to speak of, except for the four items of accessories I just mentioned.
- Lost my penis as it was offended by the rough insertion of a long plastic catheter for the specific purpose of draining my urine safely and hygienically into a waiting collection bag. The hospital system had clearly concluded that all other penis functions were redundant in the circumstances
- Lost control over everyday simple actions, taken over from me including washing, feeding, or even movement in bed; all activities taken over by the hospital medical staff.
- Already lost choice of clothes to wear with only one item allowed, the green tunic described in the previous blog.
- Lost appetite for ALL foods and remained on feeding by tube for many, many days
- Lost direct contact with the outside world except through a very narrowly defined channel called Claire
- Lost track of time and location as the days and nights exchanged control of my life
- Lost the majority of my inner-core strength. This is where we derive the energy to sit up, down, control our inner organs such as bladder and bowel control, hence the insertion of a catheter from the outset.With outer muscles also largely disappearing, I could not rely on mechanical pivoting to push with my hands and elbows to sit up or lie down. Basically, I was a body in need of aid for EVERYTHING
- Temporarily lost perspective on my relationship with the outside world and began to feel self-pity, victimhood, and a sense of desperation
GAINS – The notable gains were:
- Gained a white beard because I had no dexterity to shave safely but, the ICU was mostly concerned with my interior physiology rather than my outward appearance
- Re-gained my penis soon after Dr. Petrou gave orders to remove the catheter.
- Gained, albeit temporarily, 14 kg of weight through fluid retention in the lower half of my body, leaving me looking like a pear for a week or so, before a nephrologist was brought in to fix this little problem.
- Gained two additional items of unwelcome accessories: The first accessory is an anti-deep vein thrombosis (DVT) through sustained lack of mobility. This item was a pair of stockings which came in a pink shade with a wavy trim at the top. You may recall from the previous blog I related the embarrassing pre-op shaving experience where the young nurse shaved my thighs half-way down to my knees. When another young nurse introduced this item of revolting accessory the day after the operation, she began, without my permission, to put them on in the presence of my beloved family. Still under heavy sedation, I lay back and let her get on with it until she was done. Suddenly I became aware of giggling by my family so, with remnants of energy, I lifted my head and looked down. Almost with German precision engineering accuracy, the pink DVT stockings covered my lower legs right up to the freshly shaved upper legs. No other way of putting it; I looked like an old French tart, desperately looking for customers at Marseille’s dockside. The second and no less sinister item of accessory came soon after the first, when a male nurse walked in and introduced a small vibrating machine out of which came two cables attached at the other end to Eighties-style leggings that wrap around your calves and are secured in place by three strands of Velcro. These leggings came in sky-blue colour with their own pattern of trim round the edges. The male nurse explained that this would help keep my legs muscles active. The machine was plugged in, the leggings applied on top of the pink DVT stockings and finally the machine switched on to demonstrate its function. Apart from the grotesque sight, each leg was alternately vibrated by the machine for 30 seconds, a pause for 30 seconds, then the next leg was vibrated for 30 seconds and a final pause of 30 further seconds. It was horrible, unpleasant and deliberately designed to keep you awake for 23 hours and 15 minutes of each day. Everyone assured me all of the above was doing me good; perhaps physically but, psychologically? Nope.
- Gained, or to be more precise, my ‘backside and private parts’ gained friends and admirers around the hospital. Let me explain. All medical staff must have had it written in their contracts that they have the right to expose any part of any patient’s body at will. In the release papers I signed on the day of the operation, there must have been a clause that confirmed this right. Specifically, in the first half of September, this constant access to my body was a toughening experience for me and gradually, I began not to care where they went, what they did there, and what the purpose was. I was like an abandoned piece of land that the children of a neighbourhood had claimed their own and used as a playground to do whatever they liked. I always found it interesting that people generally, including me, like to witness other people’s misfortune with morbid fascination. We all slow down when we approach the scene of car accident to have a look; when someone falls in the street, some will go to their aid but, the majority gather and watch; and when we are visiting someone in hospital, we never walk straight to their room instead, we walk slowly, looking left and right into other patients’ rooms, hoping to glimpse something tragic and terrible. I had countless people peer in to my room and again, after a while, I stopped caring. I stopped caring, so much so that when I was helped by two nurses to take my first steps to mobilise my body, One nurse would grab my right side with one hand, and with the other, carry a large white bag containing the smaller internal fluid-collection bags attached to tubes surgically inserted through holes on the day of the operation. The second nurse would do exactly the same to my left side. Neither they nor I were in a position to make sure that the dreadful green gown was covering the specific area mostly open to exposure, the ‘backside’. As we took our regal procession through the ICU ward and into a seating area designated mainly to visitors waiting to be allowed in to see their loved and ailing relatives, I sensed that, every visitor could not wait for us to draw up level with them so they could have a sneaky look at my insubstantial backside and satisfy their own curiosity. Did I care? To begin with yes, but then I no longer did, leaving my backside to make its own friends. I even imagined a fictional social exchange between it and some of the more frequent visitors that went something like this:
- Hey Mufid’s backside, how is it going today?
- Oh not so bad, Andreas, a little tired but not bad thank you for asking
- Keep hanging in there, you are looking good
- Thanks Andreas, see you next time
- By far, the most significant gain I acquired at some point during my recovery period, was the determination to assert my own personality and rights in various areas from the trivial to the very serious. As the days piled into weeks I worked out tactics to challenge, question, and suggest alternatives. Effectively, I became a ‘hospital rebel’. No doubt, had I been in a state general hospital instead of a private one, the challenge would have been much harder nevertheless, the private American Medical Center still had its own rules and regulations and was not going to allow patients to dictate or vary every piece of routine. However, people are largely conformists and go along with the system, because it is easier to do so than continually challenge everything. I cannot say when exactly this ‘flipping point’ happened but, it did. I firstly negotiated the right to bed-wash parts of my body then the whole thing by suggesting they watch and supervise. I began to question every intravenous or oral medication given to me and what it was meant to fix. I then asked for my daily blood results, questioning the ups and downs of my vital signs and what they meant. One recurring medication was the cocktail of antibiotics I was given many times a day to cover all possible infections. The side effects were horrible and I kept on nagging the senior surgeon in charge Dr. Petrou (Yes, one of my angels). Coincidence or not but, after consulting fellow doctors, he eventually narrowed this down to a single type of antibiotics, which made an enormous improvement to my mood and general wellbeing. Noticing my growing discomfort with the green gown, Claire went searching for dressing gowns all over Nicosia and eventually found one which covered all the pipes, as well as my very popular backside. This too gave me some reclaim of my outward appearance. Finally, I asked Dr. Petrou to stop promising a release date in order to motivate me for a few more days and said: Can you please stop using release date as an objective; I am here to get better however long it takes. To his credit, he agreed immediately and our daily reviews took on a more balanced discussion and our overall relationship took on a more adult-like nature than before. I can cite many other examples but, I am sure you get the idea by now.
This final gain kick-started my search and gradual recovery of my dignity. What’s more important, I grew up a little and began to look at dignity in a slightly different way. I realised my dignity was not a single package that you either have or you give up to others. My dignity was composed of many parts that can be partly or wholly retained, lent, discarded, recovered and shaped the way I chose. Others may have, with good intentions, ripped it off my hands from my first day in hospital but it was up to me to go out searching for the various parts and reconstruct my dignity as I wished.
I may have given the impression that the gains I made were done with sheer force of personality, doggedness and aggressive attitude. That would be a big, fat lie. I was dealing with experienced, intelligent people who see many more characters like me than I have experience of them. I mostly employed nurturing individual relationships, searching for a shared sense of humour, or common grounds of interest, before moving in and claiming back another piece of dignity. I can honestly say throughout my entire stay, there was never a single incident of serious confrontation with any member of the hospital staff.
For a while, I wasn’t sure how to conclude the two-blog talk about ‘Dignity’. Out of the blue, my Guardian Angel guided a friend of mine to comment on an earlier blog with a powerful thought. My dear friend Osama wrote and reminded me of the superb 16-line poem ‘Invictus’, a Latin word that means ‘Undefeatable / unconquorable’ by the 19thCentury poet William Ernest Henley. A 100 megawatt of an idea bulb-flashed in my head that fitted perfectly for ending this blog. Here is a reminder of / introduction to the poem:
Invictus
Out of the night that covers me
Black as the pit from pole to pole
I thank whatever gods may be
For my unconquerable soul
In the fell clutch of circumstance
I have not winced, nor cried aloud
Under the bludgeonings of chance
My head is bloody, but unbowed
Beyond this place of wrath and tears
Looms but the horror of the shade
And yet the menace of the years
Finds, and shall find me, unafraid
It matters not how strait the gate
How charged with punishments the scroll
I am the master of my fate
I am the captain of my soul
I have always liked this short poem and found it inspirational because every one of the 16 lines is full of dignity, especially the last two: ‘I am the master of my fate; I am the captain of my soul’, which are incredibly empowering. But reading the poem anew, it moved me to tears of joy and hope. I have found my DIGNITY again; it was always inside me; I just needed to remember, reclaim and encourage it to come together again. I am indebted to you, my friend, Osama.
In this two-part blog on ‘dignity’, I wanted to be honest with you about what goes on outside the medical efforts to improve my chances of full recovery and focus on what went on within my self-consciousness as Mufid Sukkar. I hope the two blogs firstly entertained you and secondly allowed you to understand me a little better.
Once again, your comments and questions are always welcome, I promise to read them and where appropriate, I will respond and explain.
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Thank you.
This is Mufid, warts and all. A very honest depiction of the last few months.
The best tribute I can share was that of his surgeon, The amazing Dr Petrou, who told me that by this stage, most patients become withdrawn, aggressive and refuse to talk to their family and become generally difficult. Not this man folks, he maintains his dignity and writes a blog.
I haven’t commented before, partly because it has been too painful but I am so proud of this man, my husband, your father, uncle, your friend, your colleague. Trust me, no dignity was ever really lost. I salute you Mufid, you are an inspiration to us all xxx
Inspiring as ever Mufid. Keep strong and I look forward to your next blog. xxx
Wow!! Mufid you are truly an inspiration. Still with your sense of humour intact. Wishing you a speedy recovery. X
Oh my, fabulous read again Mufid. You made me laugh and brought tears… again!! Dignity never lost just buried under extreme experiences. After a cancer diagnosis it’s like you’re strapped into a rollercoaster seat and someone presses go. You have no control , just one treatment after another and a feeling of loss of control over self. Your blog is so touching, honest and personal. I envy your tiny bum even though you achieved it through a crap time. There’s an invite on the way to our fancy dress party… theme is French tart… much love your way xxx
Thank you Martina for your continued interest and support, I really appreciate it, especially from someone like you who knows exactly what is behind this terrible disease. I am also very glad you find some of my writing funny because light-writing is my default setting and my sickness altered this setting temporarily. xx
Thank you for continuing to read and giving me feedback xx
Dear Mufid,
We followed your brave journey from the start, but not in such details, a really good read, full of humour, it portrays an emotional rollercoaster, fighting against all odds, optimism, faith and above all; the love of people around you.
Definitely no dignity ever list dignity ever lost.
Claire you are a real rock and it shows in these difficult times.
We pray to God that you get well soon to celebrate your full recovery with your loved ones.
Keep it up and keep writing . Our warmest wishes for a full and speedy recovery
Dear Mufid
I found this to be the saddest of your blogs so far. I’m teary at the thought of what you are going through. Yet this is the most hopeful of the “episodes” Your physical dignity has been ripped from you due to the forces required to help you regain your health but your emotional dignity? No that was never lost. Over more than forty years in nursing I have cared for many patients who have lost their dignity,indeed have played a part in ripping it from them in order to get them back to health but I have never met a man more dignified than you my friend in the face of extreme adversity. People have commented that you are an inspiration. Indeed you are ❤️
Thank you for sharing Mufid, your words conveyed humility, honesty and courage. I respect you a lot for this. You also made me laugh out loud when you described yourself as ‘the hospital rebel’!