The fatigue means that days are merging into a featureless, colourless mass, indistinguishable from each other. I often forget which day it is!
The second descent to the depths. If anything it is even worse than last time. There is no reason or logic down in these depths and death presents itself as just another option. In my despair I strike out verbally at Lesley. Once again, however a tiny shelter appears in the blackness. Again it says ‘this just an event, tomorrow there will be other events’.
We are often told that depression is far worse than the common conception and the word is often misused to describe a sad, weary or simply pissed off feeling. If I have briefly experienced that place where sufferers of depression regularly reach then their lives must be unimaginable. At least I have the chance to escape once bodily fitness and strength start to return.
Later that evening I am collapsed on my bed and realise that I am free from aching and discomfort. This another event. Something to hang on to.
I have been having strange dreams – hallucinatory despite almost all the medication being stopped. Here is the weirdest on. I was trapped in a modern art paining featuring a white featureless landscape. I am trapped because to move you need something to push against (the earth most commonly). But I have nothing so am stuck. Terrifying.
Other objects appear. This means that there are other people in this painting with me but I don’t know where they are and I cannot communicate with them. The objects take the form of icons which are used in various ways by invisible agents. This continues for some time until I awake.
When I do so I my blanket has fallen off leaving me with just a thin topsheet in a room which is growing colder in the early hours!! But I have agency here and ask Lesley to close the window. Th unconscious, huh, who needs it with its strange symbols.
Mid afternoon my phone rings and it is Margo from the hospital. It was Margo who tried to call yesterday. A call to check I am OK is all that is required and she confirms that a nurse will call by my home later on Monday afternoon to remove the stents from the stoma.
I decide todays exercise will be for Lesley to drop me off and pay me credit card bill. It works, but I return home with barely enough left to eat my evening meal. The shivers come on and everything feels worse.
A specialist nurse is due to call on me today. I wait until mid afternoon then go upstairs for my afternoon sleep. I check my phone, while asleep I have missed two calls which show a private number. Bugger, Somewhere I was given a card with contact numbers on. We set about searching for it. Lesley does most of the searching and I make the best attempt I can. After an increasingly futile and frustrating hunt Lesley points to the shirt pocket I was wearing on Friday evening and it looks likely the card has been destroyed in the wash. Brilliant.
I receive my payslip from work. This is a lovely surprise and is a reminder that I am part of a wider functioning community out there.
I reach the blackest of depths. The combination of shivering and low energy starts to affect my mental state. This is awful. I drop to a black place where no one else exists. It is enclosed. I cannot think and tell Lesley that my spirit is smashed and I’m not sure I can do this..
I go to bed. The radio is on and the presenter plays 2 long late John Coltrane tracks. I have them somewhere in my collection. I drift in and out of sleep, each time waking to Coltane’s evocation of the human spirit. I start to pick up. It is a new and more pleasant event.
The night is unpleasant with a burn up at around 1am leaving me in sweat.
Nine weeks since the cancer diagnosis.
Today is the day I need to contact the Hospital to have my drain removed. I have been looking forward to this. I contact my consultants secretary at 9:30am. It goes to voicemail so I leave a message. Time passes and no reply. I feel my energy levels are definitely much lower than the equivalent time on previous days. 11:15. I decide to try the secretary again with the same response as before. 11:30 still no response. All she has to do is arrange that procedure, not carry it out!
I change tactic and call my discharge ward, Ward 22. An assistant nurse knows nothing about it but promises to sort it out for me.
2pm. The phone rings. It is Craig a Doctor on Ward 33 arranging a time – 3:15 for me to come in and have it sorted. Excellent.
3:15. Coventry Hospital Ward 33. There is a wait until the resources are available to do the procedure. After 30 mins Nurse Diana does a first rate job on the drain. As it leaves my body there is a curious sensation of me leaving it and feeling a little sick.
Lesley takes me home but I am exhausted and my body temperature is unstable. I am irritable.
OH MY GOD! This is it – the acute fatigue.
The day starts well and Lesley helps me get out of bed. That is a lillte easier.
Just a short walk today close to home, nothing strenuous.
4:15pm.At home and resting on my bed;feeling a little cool despite the warmth of the day. Lesley is heading out and she asks whether I am OK for a few hours. I say yes and ask whether she feels warm. She says absolutely. On of the dreaded infections warned about? Its about the right time. – a week after the operation I feel my temperature drop further and I start my shiver. I reach for the only thing within range-my pajama top and drope that over me. Utterly futile I am now shivering violently and uncontrollably
With considerable effort I force myself downstairs, turn the fire on full and gather as many coats as I can to pile on top of me. But I feel no other symptoms, no sore throat, cough or back pain for example.
Finally I start to feel warmer and the violent shivering has started to ease back so that it is noe only washing over me in waves.
But for the rest of the evening I have barely enough energy to literally do anything!
I have a disrupted nights sleep’ trying and failing to get comfortable after 3am
Today is the first time a need to change my bag without support being on hand. Scary. Unfortunately the bags are slightly different to the ones I’ve been used to so it takes a while to sort myself out.
I reflect that many maintenance tasks are similar to maintaining an Austin Healey Sprite/MG Midget (old sports cars for any younger readers). To get a proper seal on my bag I need to ensure that the o-ring is properly attached.
Same as with a AH Sprite rear hub seal. I am still using some anti-embolism stockings (for the dangers of embolisms, check out Iain Anderson’s (Jethro Tull front man) who nearly died from one and campaigns for these stockings.
The point is that they are long. thick and tight (like some people of my acquaintance!). I have found a way of levering them on to my legs using my big toe as a pivot. Just like replacing the bump stop on a AH Sprite!
I decide to do a little exercise and walk about 300 yards very slowly to a small brook. It is the sort of distance I walk on a hospital appointment.
Note! Since leaving hospital I have been beset by a number of issues. the major one being the acute fatigue which I was repeatedly warned about. I have some notes but sometimes fatigue prevented even those. I am thus reconstructing the events as best as I can.
12.05am Coventry Hospital Accident and Emergency Department. A tense worrisome wait for an appointment. My confidence is smashed and I sit in the waiting hall in something close to panic. I cannot think. This is unusual for me to be totally mentally frozen. I hope no-one speaks to me.
The situation started about 10.15pm, yesterday. Friday. I had just rolled off the bed and noticed that some of my clothes were wet. On investigation, to my horror I notice that the drain in my belly was leaking. Oh my God, what has happened? I am on all fours and am at a loss. Finally with Lesley’s help I get changed, pack the wound with kitchen roll and in a moment of inspiration yell at Lesley to grab my Stoma materials.
12.45am Coventry Hospital Ward 22. Back again a few hours after I left! A Surgeon examines me, assures me that no damage has been done and suggests a course of action to help me make it to Tuesday when the drain is removed. He promises to send in a nurse and departs. The relief is almost overwhelming to me. By sheer luck, a ward nurse I have complete confidence in passes outside the examination room. She comes in and jokingly demands to know what I am doing back here. I explain, she takes one look at the situation and says no problem. She takes control and sorts the problem out. The solution she implements is exactly the same as the one the Specialist Nurse proposed hours earlier.
2am Back home again. Totally exhausted but confidence restored. Through the actions of one nurse!
I wake after 5 hours and the rest of the day is thankfully uneventful so I mainly sleep.
So the first stark lesson of the importance of events taking their course. A very treacherous small wave!
So I’m back!
The Great Wave has hit and I am rolling with it. There will be any number of smaller waves which could prove just as treacherous by appearing to be less important. Or maybe the Great Wave is hiding a much bigger wave. So nothing is taken for granted.
It goes without saying that the days since Friday ( the operation was on Sunday) have been eventful. But I’m keeping to the plan I outlined at the start by not overburdening the blog with medical minutiae – times and dates of what ward I was on, drugs that were stuck in my arm, innumerable medical procedures. I cannot remember most of them anyway! Morphine.
Instead I’ll go with my impressions and thoughts about my time in hospital. These often focus around Lao Tzu’s philosophy.
I realized that I had not fully appreciated the first part of his question. “Can you deal with…”. Not acquiesce, submit or some fatalistic word. It is the active part of the phrase. It means that you respond to events, which may be in a positive or negative manner.
In my last post I said the bladder removal operation would be the biggest test of letting events take their course. I was wrong! Since the operation news and events have largely been positive, meaning that confidence has soared and I am expecting events to have certain outcomes and progress to be rapid. As a result it is far more difficult to simply deal with events by letting them take their course.
5:30pm. Lesley collects me from the hospital back to the real world. I am leaving with an extra drain bag which is annoying as Karen the Specialist Nurse had suggested a neater solution based upon a bag which was positively refused by the staff nurse preparing me for discharge..
The Great Wave has been closing in on me much faster than I thought.
9:00am at home. A call labelled Private Number on my phone. Oh-oh. Almost certainly the hospital. I answer the call. It is the Consultants’ secretary. They have a cancellation for a bladder removal on Sunday and they are offering to carry out my operation early. I promise to phone her back after making a few calls. I consult Lesley and my boss Steve, more out of courtesy than anything. But it gives me time to get my thoughts together. I call the Hospital back and accept. This is surprisingly disorientating. I was mentally geared for Thursday, but now I have to prepare for Sunday.
9:55am Rugby St Cross Pre-operative Assessment Unit. I am weighed and have my blood pressure checked. Apart from a few swabs the rest is a formality as nothing has materially changed from my last operation a few weeks ago. The nurse is kind and reassuring. No ECG is required so I am on my way.
10:15am Back home and a cup of tea before preparing to travel to work. Another call from the hospital. Margot the Specialist Nurse asks if I can call in to see them in the next couple of hours to position the stoma.
11:45am Ward 33, Coventry Hospital. I meet with Margot and she locates the best position for the stoma. Literally X marks the spot! It is a target for the surgeon!
I travel in to work and it is a crazily busy afternoon trying to tie up the loose ends 2 days early.
And so my blog takes a break. I have no idea whether it will be short or long. But just like Hokusai’s painting at the top of my blog, the wave has caught up with me. Just like the sailors I cannot avoid it, but must go with whatever happens.
Thank you for the advice Lao Tzu, now is the sternest test…….
The 16th August. Exactly one week to go. It is now becoming real. I can feel the Great Wave starting to bear down on me. I have been reflecting on how I have handled things so far. I have rejected much well-intentioned advice on positive thinking, keeping so busy I am distracted and being determined to get back into active life as quickly as possible.
Tomorrow I have my pre-operative assessment at Rugby St Cross Hospital. It is strange to be having another assessment so soon after the last. Strange also since I feel well now the surface tumour has been removed. But the thought of not seeing another August is sobering – the unseen killer still lurks. Suddenly the weekend with my family and friends seems a long time ago.
The TV adverts run by a cancer charity make sense now. The first emphasising that someone with cancer is still a father, uncle, colleague, sportsperson etc is still just that is important. An individual cannot be defined by this disease. And after all, its not contagious. The second one showing how lonely a cancer diagnosis can make you feel is also absolutely correct. Despite the love and support I feel, this is something which no-one else can really share. The adverts must have been devised by an insider!!