the year of emerging victorious

2012 was supposed to be the year of ’emerging victorious’. Like most projects I have been involved with, this milestone slipped. At the end of 2012, I was about as far from victorious as is possible. Mentally and physically, I was at a very low ebb. I was knocked sideways by my second bout of chemotherapy and I was hospitalised on six separate occasions between September and February with recurrent urinary tract infections.

2013

January – on verge of going to my GP to get anti-depressants but I paused for thought and went to visit my stoma nurse instead. She said the stoma had changed in shape so my bags were now too small which was why they were leaking with increasing frequency. She recommended different bags and accessories and to a large extent the problem was resolved. So was my state of being ‘clinically fed-up’.

February – the insurance company kindly award me a nominal 4% pay rise – for (literally) sitting on my backside.

March – the kidney stent is removed. A surreal experience conducted in an operating theatre by a surgeon wearing bloodied wellington boots with no anesthetic but one that needs no more elaboration here. Guess what – no more UTI’s in the 6 months since then.

April – the realisation suddenly dawns on me that I have now seen every single episode of ‘Wanted Down Under’ and the followup ‘Revisited’ program. I am now mindlessly watching repeats of ‘Brownlow family sample life in Brisbane’. After 18 months offline, I finally start to focus and to open discussions with my manager and occupational health about a phased return to work. Confirmation that normal service has been resumed as I sit in the pub, sipping ale, to see Manchester United win their 20th title.

May – resume working but slowly. Start at 8 hours a week gradually increasing to 18 hours by end-June. My employer kindly arranges for a variable height desk and ergonomic chair to provide me with a better working environment at home.  Begin by trawling through email, QA’ing documents for colleagues and staring at problematic Siebel queries.

June – feel a bit like a spare prick at a wedding. I used to fly to glamorous locations in Europe parachuting in to troubleshoot tricky issues. Now I am supposedly ‘working’ 28 hours a week but I feel like I am grabbing crumbs from the table, coasting and de-frauding my employer.

July – get on a train, get on a tube, buy a coffee  and attend a team meeting in the London office. No big deal and thousands of London commuters do the same ritual day after day. However, it’s difficult to explain (unless you’ve been there) what a massive psychological hurdle this was for me. Taking that step into that office with all my colleagues and some new faces. But, of course, nothing had changed. I hadn’t really changed. They hadn’t changed and within 30 seconds we were cracking the same old jokes, talking about the football, laughing about old war stories and recollecting the ‘Cairo incident’.

August – An opportunity arises to be seconded to a different project working on new product development. This will be in a small team, remotely based, working on Oracle Real Application Testing which is ideal for me. After 8 months, of daily tinzaparin injections, a scan on my right arm shows the blood clot has finally dissipated and we can stop the tiresome nightly ritual. Take a week’s holiday and visit Cambridge. Go out for drinks in successive weeks with close friends which lifts my spirits further.

September – Overcome a late crisis of confidence, get my shit together and go into London for a drink with a few mates.

October – The phased return to work is now complete. We are now up to 40 hours a week. 16 months after surgery, the routine monitoring CTI and MRI scans are clear. Surgeon says if the next scans in March remain clear, then ‘we can get the champagne out’.

Finally, after two long years, I feel that I have finally emerged victorious.

quandry on the MRI scanner

Today I visited my friends at the Royal Marsden in Sutton for routine MRI and CT scans. As I completed the pre-flight questionnaire and carefully removed all metal accessories from my person, I laid down on the bed ready to be inserted into the MRI scanner. A nurse injects some muscle relaxant into my right arm.

Then came the question, I’d been dreading – ‘Would you like any music during the scan ?’ ‘Yes please’. ‘What would you like ?’ ‘Have you got ‘Give Em Enough Rope’ by ‘The Clash’ ? ‘Err no – I don’t think so’. ‘High Violet’ by The National ?’ ‘Not heard of that one’. ‘50,000 Fall fans can’t be wrong ?’  ‘Err – sorry. Never heard of that one either’. ‘Best of R.E.M ?’ ‘Oooh – I do lurve R.E.M but I don’t think we have it here’.  This was getting desperate – time to go for the one of the most popular albums of all-time ‘ Do you have ‘Never MInd’ by Seattle grunge rockers, Nirvana ?’ ‘Julie – any Nirvana back there – try looking in the bottom drawer of Frank’s pedestal’. A slight pause while Julie forages around in Frank’s drawers – ‘Sorry, it’s locked’.

‘Ah OK – maybe just tell me what you have got…’ ‘Well we have ‘Now That’s What I call 80s’ and that Pink Floyd one with the prism. ‘Oh no – sorry but I’m not having ‘Dark Side Of The Moon’ – that LP was why punk was invented”. Julie emerges breathless but triumphant and offers: ‘Hang on, I think there’s something by Enya’. ‘Not really my taste – do you have any gentle, soothing, calm music of whale noises accompanied by a Irish harp ?’ ‘No – I think The Medical Day Unit borrowed our copy for their Christmas party’. ‘Julie – what else do we have back there ?’ Julie responds ‘I’ve just found a CD disc in the bookshelf – no case but it has a lot of red rose petals on’. ‘Hey that’s fantastic ! ‘No More Heroes’ by The Stranglers. That’s great – please just play that. Thanks a lot’.

I re-position my legs over the support cushion, get comfortable and adjust my head into the correct position for the 45 minute scan looking forward to listening to a long forgotten punk classic in its entirety.

The headphones are carefully lowered over my ears and the alarm buzzer is placed into my palm.

The first scan is imminent – ‘This scan will last for 7 minutes – please remain perfectly still’.

Then Julie comes on the intercom – ‘I’m awfully sorry, Mr. Brightside – this CD appears to be ‘All Woman III’. Is that OK ?’

Low, low, low

I have thought long and hard about writing this post. I have avoided writing it for a long time. At times, I thought maybe I just wouldn’t write it. But deep down inside, I knew I simply had to write it. In fact, I knew I had to write it since the evening of Friday 14th December 2012.

After a slight delay caused by the UTI episode, I resumed chemotherapy treatment. This was exactly the combination of toxic poisons I had been given a year ago but this time, the purpose was a post-surgical sweep to eradicate any residual microscopic cancer cells.

Before we even started chemo, there was a problem. My portacath had been removed during the urosepsis incident. No problem – I had another one inserted on the right side this time.

Chemo started but instead of cruising through it, this time was different. I felt tired, I felt lethargic, I felt listless. I felt fed up.

My 50th birthday came and went in November. My plans to hire a function room in a pub and get ‘I Am Not Left Handed’ to play under a banner ‘Emerging Victorious’ didn’t come to fruition.

December came with all the forced jollity of Christmas. Chemo sessions came and went every fortnight. I had to carry that damned baby bottle around for 48 hours after each session.

I felt shit. I felt low. I would wake up and think ‘Only 14 hours until bed-time’. I used to resent my children (both students) slothing around, getting up an 12 noon when I felt compelled to get up normally at 8 o’clock – just to appear ‘normal’.

Christmas approached. A rendezvous with my mates also loomed large. A year ago, I had opted out of a similar Xmas drink-up. This year, I had been determined to make it; after all, they were all travelling across London to a pub 200 yards from my house just to accommodate me. I felt shit. I didn’t feel like going out – even with my closest mates who I’d known for over 20 years and had been supporting me in recent times.

I was about to send the email to make my excuses and wuss out. Cancer’s great – you don’t need to justify anything like that anymore. No piss taking, no jokes – it’s universally and instantly accepted without question.

Before I could hit ‘Send’, a mate from Manchester said he was on a course in Oxford and would love to come down to London for the Friday night meet-up. Bollocks. I couldn’t cancel now – the decision had been made for me. Still, maybe that was for the best.

Friday 14th December arrived and I felt OK. In fact, I was quite looking forward to it. Steve came and parked his bags. We had a chat, he made the kids laugh and then we responded to the inevitable ‘WTF are you ?’ text message by trudging down to my local at 7.45pm.

It was fantastic to see them all. It was the best thing I could have done. I hadn’t see some of them since the start of my minor health issue. It didn’t matter – there was no awkwardness, no spontaneous tears, no stilted silences – just ‘What are you having, you old git ?’ and discussion about life, football and Hook Norton. Just like old times, in fact.

Maybe this was it – the turning point. Onwards and upwards from here.

I went to the toilet – I checked the condition of my modified waterworks. Fuck me – this bag was leaking. But I’d only changed it just prior to coming out, specifically to avoid this. I could always change the bag here and now in  cramped toilet like a Coke head sniffing white powder off the toilet cistern.

Fuck it – this was too much. I made my excuses and left ‘Sorry lads but I’ll have to call it a night. I’m a bit tired’.

Again, no challenges, no ‘Fuck off – it’s your bloody round, Get ’em in now’. Nothing. Just a slight look of surprise and some hurried good byes and Christmas greetings.

So that was it. 2012 was supposed to be the year of emerging victorious. Instead, I found myself in a pub, with my tracksuit bottoms streaked in piss, wishing my mates ‘Happy Fucking Christmas’.

I walked back home on the cold December night. I wouldn’t be going for a curry. I scurried home, made my excuses and immediately went up to bed. Half past 9 on a Friday night.

Suddenly and inexplicably, I just felt quite overwhelmed. I was in pieces.

16 months since my diagnosis, after all the chemotherapy, after all the radiotherapy, after all the consultations, after all the pills, after 14 hours of surgery, after cyberknife, after all the infections and after yet more chemotherapy, I was supposed to ’emerge victorious’. I had done it. I had beaten ‘Locally advanced, stage 4 colorectal cancer’. I could take my place in the survivor’s lounge. I could go on sponsored walks and give talks to my local Bowel Cancer Support group.

So that was it – a rather irritating 16 months out of my life but it was now over. Back to normal, back to work. Everything is now over. Finished. Well done, Andy.

Quite the contrary for me though – I felt very low during that final 12 weeks of chemotherapy and everything seemed to finally snowball and engulf me on the evening of Friday 14 December. Undoubtedly, my body didn’t cope with the chemo as well post-surgery as it had before but it just seemed that, emotionally, everything caught up with me.

All that pent up emotion, all those scans, the -ostomies, the minor procedures, the major surgery, the district nurses visits, the outpatients appointments, the ‘Get Well’ cards, the survivor guilt – all those emotions just seemed to overcome me.

It was as if 16 months ago, I couldn’t believe I had bowel cancer, now I couldn’t believe I’d beaten it.

Paradoxically, when I should have felt triumphant, I felt lower than I’d ever felt before.

But at least, I’d bought bacon, eggs and sausages for Steve’s breakfast.

UTI

August 2013

I was at home gradually recovering from my surgery, watching the London Olympics and eating grapes. One morning, I ate my Crunchy Nut Cornflakes as normal. As I watched the triathletes embark on the swim around the Serpentine in Hyde Park, very suddenly and without any prior warning, I was sick. Miraculously, my wife managed to get a waste paper bin under my mouth to catch the output.

I didn’t think much of it. I felt perfectly OK. Strangely, my wife (for once) didn’t seem overly concerned either.

The same thing happened the next day – 30 minutes precisely after my breakfast, I was heaving into a plastic bowl. This continued into a fourth day when my wife suggested we called the Marsden to report this exciting development. I was reluctant as I suspected I would be summoned to hospital for a test and not get out. My wife took my temperature. Before the gadget was out of my mouth, she had picked the phone up. This wasn’t a good sign – ‘Hello – my husband is vomiting and has a temperature of 38.7’.

Before I knew it, we had packed a rucksack, turned the Olympics off and departed for the A&E department of Kingston hospital. We registered and sat in the waiting room with a load of people, who, like me, on the outside didn’t look overly poorly.  This was my first ever visit to a casualty department and slightly disappointing – where were the ‘I had an accident with a chainsaw’ type injuries ?

I was triaged by a young, attractive nurse. Which was nice. Her eyes glazed over as I gave her my medical history. She led me to another waiting area and took some blood and urine samples. After a while, inevitably, I was told I had an infection and needed some antibiotics. Not just pills like anyone else but IV antibiotics. Into my arm. Using a canula. That took three attempts to get inserted into a vein,

Eventually, after a couple of hours, I got taken to a ward and shown to a bed. A nurse went to get me a pillow as I was having a sleepover. She came back with a pillow case which looked like it had been stuffed with a blanket. My wife saw this and interjected – ‘Sorry – but is that a pillow case stuffed with a blanket ?’ ‘Err, yes – it’s Sunday you see and we are waiting on laundry services’. My wife (a nurse) nearly exploded with rage (it’s strange what she gets worked up about) and after a lengthy exchange during which I kept quiet, a clean, white pillow was brought to my bed.

I thought about asking for four more as, at that time, I used two pillows for my head, had another between my legs and two more to prop me up and ensure I didn’t roll onto my back. But I thought that might be pushing NHS resources a little too far.

After some drugs, I didn’t feel any better because I didn’t really feel ill in the first place. However, they took my temperature and seemed reassured.

The next morning a doctor came and told me I was progressing well but I being referred back to the Royal Marsden in Fulham Road ‘because of my complex medical history’ and to be seen by the urology team who performed my surgery. That suited me fine as the food was much better and I would have my own TV so I could watch the Olympics and request five pillows with no questions asked.

So I arrived at Fulham Road and saw some familiar faces, the very same nurses who had waved me ‘Goodbye’ in July. They took some more blood and resumed the IV drip. They came and took my lunch and tea menus.

The urologist was concerned about the creatinine levels in my blood tests. They were off the scale apparently which meant my kidneys weren’t functioning very well. He wanted to investigate this as a matter of urgency and proposed squirting a colouring agent back through my waterworks. to check the flow.

The test was duly performed in the X-ray room and the nurse told me ‘Oh – well here’s the problem. Your left kidney is blocked and not passing any fluid at all’.

I thought I could fix this by drinking three gallons of water and gently squeezing my left side but the urologist seized upon this exciting piece of news as an excuse to subject me to another medical procedure – a nephrostomy. So the next day, I found myself in another small medical consulting room with a doctor inserting something into my back to reach the left kidney and take some photographs of what he saw. It was a short procedure and didn’t hurt too much – a slight discomfort.

When it was over I got off the bed and said to the nurse ‘Thanks for the sedative – worked really well. Hardly felt a thing’. She smiled and said ‘I didn’t give you any sedatives. I was watching you closely and you seemed to tolerate it pretty well without any pain relief’.

The urologists looked at the photos and concluded my left kidney ‘showed dilatation at the exit’. Basically, the tube was blocked or narrowed – probably as a result of scarring after the original surgery back in May.

Great – so now what ? As ever, the urologist had an answer – he would simply insert a stent (a very small plastic tube) to widen the tube, keep it open which would hopefully resolve the situation. And the even better news was – they could use the nephrostomy to carefully insert the stent into position.

So the next day, I was back in the same small room, staring at the same nurse who wasn’t going to waste any sedatives on me. Doctors did stuff, looked at ultrasound images and inserted the stent.

Back on the ward, my wife posed one of her pertinent, probing questions to the Professor – ‘Even if the creatinine levels return to normal, how will we know whether the left kidney is, in fact, working again. It could be masked by the right kidney compensating and doing all the work. What if..’

The Professor who was a world renown expert in his field, with over 30 years experience in urology, politely interrupted with the calm, reassuring air of a man who had seen and heard it all before.

‘Mrs. Brightside – you ask a very good question and you raise a perfectly valid concern but there are tests we can run, investigations, non-invasive procedures we can perform…’.

I didn’t like the sound of this – ‘procedures we can perform’. Couldn’t we simply just check the colour of my urine and say ‘Looks OK to me’ ?

Before my wife could reply, the urologist said with a smile that he had given to hundreds of medical students over the years – ‘Yes, we can always squirt the colouring agent the other way, you see’.

And with that, he and his entourage left the room.

Anyway, I completed the course of IV antibiotics, I stopped puking, they removed the nephrostomy, left the stent in and after another week, I was discharged.

a chat with a clinical psychologist

August 2012

I was back at home. The London Olympics was on. The sun was shining. The flurry of post-discharge activity and regular visits from district nurses had slowed. Life was good – not quite normal but definitely good. I looked in the diary ‘Thursday 9 August – clinical psychologist@RMH, Sutton’. Shit – why did I book that appointment ? Why did I weaken when I was in hospital ? I’m fine now. There’s nothing wrong with me. Of course, I felt down in the dumps in the hospital. Who wouldn’t – being cooped up in there for 7 whole weeks, feeling like crap and unable to walk.

I immediately thought about cancelling the appointment but thought better of it. What harm could it do ? What else had I planned for Thursday – nothing ? Maybe it would help.

So I went along to the Royal Marsden Hospital in Sutton and navigated to the Psychological and Pastoral Care Unit which is adjacent to the Children’s Day Unit (I always find rather upsetting to see young people with nasal drips in being wheeled around in wheelchairs). Anyway, a young lady introduced herself to me and our session began. I did most of the talking, taking her through my medical history from diagnosis through chemotherapy followed by radiotherapy, surgery and up to the current phase of ‘post surgical recovery and recuperation’.

She occasionally interjected and asked a question or provided some reassurance. I faltered at the normal sections (telling my kids, telling my folks, how supportive my wife had been). She seemed mildly interested in my coping strategy. I told her that I found inspiration and hope from people who had battled cancer and won – or at least were in remission. I also told her that, whenever I felt sorry for myself and could feel myself feeling down, ‘you only have to walk around here or look next door [Children’s Day Unit] to find poor people much, much, worse off than yourself’. The lady gently replied, almost in a whisper; ‘So you find it helpful to look at people who have conquered this illness and you also look at people in less fortunate positions to give yourself a boost’. That sounded rather callous, cold and unfeeling which really wasn’t what I meant. I never meant ‘Hey I may have my problems but, look, I’m much better off than that poor sod’ and felt mildly ashamed when she appeared to interpret my words in that way.

At points, our session did feel worryingly reminiscent of a comedy sketch that sort of reinforced some of my worst fears and preconceptions about ‘counselling’. For example. when I was trying to describe the mental anguish of sharing the news with our teenage children, I just dried up. I paused, I couldn’t get the words out. I knew what I wanted to say but I couldn’t utter the words. I leaned forward in my chair – ‘Sorry, I’ll be OK – sorry’ and put my head in my hands. Finally, I gathered my composure and muttered ‘The TV advert gets this bit right – the worst moment, in all of this, was telling my children’ and, as always, just as in hospital, just as I knew they would, the emotional floodgates opened, triggering yet more meaningless apologies to a lady who looked young enough to be my daughter.. Once again, she leaned forward, looked sad and waited patiently while I took a few moments to dab my eyes, have a sip of water and get my shit together for the next section. Before I could do so, she helpfully observed ‘Yes – now I can see that telling your children was a very emotional and harrowing event for you. Even the memory of it, a year afterwards, is still very emotional and raw for you. Why do you think that is ?’

Well – the answer is bloody obvious. The exchange reminded me very much of the legendary doctor program in Emacs; M-x doctor

I am the psychotherapist.  Please, describe your problems.  Each time
you are finished talking, type RET twice.

I just keep crying all the time

Why do you say that ?

I feel so unhappy

Are you unhappy often?

Yes. Every day

Earlier you said you felt unhappy?

Yes. I have a serious illness.

Maybe your life has something to do with this.

Possibly. I do love pork pies and beer

Do you drink a lot of beer?

Yes

Can you elaborate on that?

I like a drink when I’m watching football. What of it ?

And so on and so forth. Repeat as necessary.

Our session ended rather abruptly. I had finished my tale, reached the present day and my 50 minute session was up. But, hang on, wait, she hadn’t really talked yet. I hadn’t received the miracle cure. What was I supposed to do now ? Were these feelings of low self esteem and survivor guilt normal ? Did I need prozac to numb the pain ?

‘Well, you seem to be in a much better state of mind than when you made the appointment. Now you’re on the system, you can make another appointment and you will be seen much quicker. But unless you feel strongly, I’d say we don’t need to schedule a regular, ongoing appointment’.

So that was that. I had been man enough to accept I needed help. I had had a session with a clinical psychologist.

Did it help me at that time ? Not really.

Would it have helped seven weeks earlier when I was on the edge of despair in hospital ? Possibly.

Did I learn anything new ? No.

Would I seek help more readily next time ? Yes.

Would a session with fellow bowel cancer sufferers with real-life experience have been just as beneficial ? Probably.

Would I run across to the ward asking for details of the next Bowel Cancer Support Group meeting ? No, of course not.

Of course, I think deep down, my resistance to obtaining help (or even medication) was really related to the fact that I was already taking a plethora of pain-killers, antibiotics, assorted pills as well as blood thinning injections. My main aim in life was to wean myself off all of this medication in an effort to gradually make a return to some sort of normality. Having a regular, scheduled meeting with a clinical psychologist – even if it was helpful – would simply have been another emotional crutch, another dependency which I would inevitably have to sever myself from in due course. Subconsciously, I think, I didn’t want to establish such a precedent and leave myself with more baggage that I would surely and inevitably have to discard and learn to live without.

going under the cyberknife

I had radiotherapy prior to surgery and because the ‘margins were slim’, I also had radiotherapy after surgery, shortly after being discharged from hospital. The second bout of radiotherapy was quite different though – it was. wait for it, Cyberknife. I had already seen an excellent BBC program all about this innovative, new treatment which featured my oncologist, Dr. Nick van As.

The first stumbling block was that Cyberknife treatment isn’t currently a recognised treatment available on the NHS. Consequently, the insurance company wasn’t guaranteed to fund the treatment which is essentially undergoing clinical trials in the UK. I knew Cyberknife was expensive. While still in hospital I asked Dr. van As how much the 3 sessions would cost. The answer – ‘£40k’. A lot of money, a sum I’m not sure I could raise without selling my house and moving my family to a trailer park in Aberyswyth. Still, what price can you put on life or prolonged life ? And, anyway, my Dad had frequently offered financial help should I need it which was more welcome than his unforgettable advice to ‘Keep your chin up’. Dr. van As reassured me that ‘There will be some to’ing and fro’ing with the insurance company but I am confident they will agree in due course’.

A couple of days later, he reappeared in my hospital room with the glad tidings that the insurance company had agreed to fund the Cyberknife treatment and he wanted to kick things off by booking the planning scan. When I expressed surprise at the speedy turnaround, he explained ‘Professor T (the surgeon) wrote to them stating that ‘If Mr. Brightside should re-present to me with recurrence of his colorectal carcinoma, after Cyberknife treatment was denied to him, then we will be seeing you in court’. After that, he said smiling, they had received approval via FAX within 25 minutes. What fantastic news – my savings were safe and my Dad’s inheritance would also be fully intact.

The Cyberknife treatment is quite different to conventional radiotherapy. Instead of a single beam radiating the affected area, a complex computer model is created which allows the radiographer to dispense tens of different beams of varying strengths to the area. For example, a strong beam might be used to radiate the central core of the tumour while lesser doses administered to the peripheral areas which reduces the risk to adjacent organs and tissue.

I has some difficulty picturing exactly what they were to target in my case – there was no tumour and there was no central core. I knew this because it was in a jam-jar on my bedside cabinet. I had this vision of my backside being a bottomless, empty void but I guess they were just radiating the area in the bowel close to the pelvis trying to eradicate any residual, microscopic cancer cells to give me the best possible chance. Which was fine by me.

Bizarrely, the planning scan for the Cyberknife treatment was done using a CT scanner which allows the team to create the computer model and 10 days later, I was in the basement of the Royal Marsden in the sterile, white, clean, shiny and very expensive Cyberknife suite. Unlike, the conventional radiotherapy which lasts a couple of minutes, Cyberknife sessions are much longer (40 mins for me) and you have to lie motionless and perfectly still for this period. so you lie on a sunbed, you stare at the ceiling which is adorned with a lovely high resolution photo of spring blossom and get to choose your musical entertainment – Now That’s What I Call ’70’s, 80’s or 90’s.

The Cyberknife treatment is delivered by a robot – do you remember the famous robot that painted the Citroen car in the factory – well Cyberknife shares a lot of the same technology and the robot base uses a similar hydraulic system to position itself and then dispense the X-ray beams. It is a little disconcerting at first as the robot whizzes and whirrs all around you – in fact sometimes I thought it was looking inquisitively at me before it lost interest and accurately re-positioned itself by my knees and then promptly withdrew high above my stomach.

After 25 minutes, the robot paused for longer than normal. In fact, it stopped completely by my feet. The senior radiographer came and explained ‘The robot wants to go where your feet are. Because we do the planning scans using CT, it doesn’t cater for people who are over 6 foot with size 10 feet’. I offered to twist my feet flat but it was no good – the session was aborted and they would have to recalculate the entire computer model – omitting the areas around my feet. I suspect this was a ‘Version 1.0’ type software problem that would be fixed in the next maintenance release.

Anyway, Dr. van As was summoned to re-jig the model and, within 4 hours, I was back on the sun bed with the Cyberkinfe robot doing its bizarre dance around my body.

Some people ask ‘Does it hurt ? What does it feel like ?’ No, it doesn’t hurt at all – there’s no burning sensation, discomfort, any faint warm glow or even any feeling at all. In fact, you’d be hard pressed to know you’d been subject to a leading edge medical treatment that costs as much as a semi-detached house in Burnley.

facing your worst fears

It was early evening in June 2012 at the Royal Marsden hospital in Chelsea. My wife had left to return home. A nurse had just been in with my cocktail of drugs that precede tea. I was looking forward to some Euro 2012 fixture involving two teams I knew little about and cared even less about the result.

The nurse was chatting about how I was feeling and I was telling her I was a little frustrated at my lack of progress. I still got breathless after the most minor exertion and could not get back into bed without help as I couldn’t raise my legs up.

The nurse made some reassuring noises about not expecting too much, too soon after such radical surgery but then took me by surprise by pulling up a chair and sitting by my bed.

‘What are you most afraid of ?’

Oh God – she must be studying for her ‘Counselling’ module and using me as a case study. I’m not sure I have time to get into deep, philosophical discussions about the meaning of life. Particularly, with kick-off just 15 minutes away.

‘Come on, Norman – what are you most afraid of ?’

‘Well – I guess – oh come on – we don’t have to do this now, do we ? Surely you’ve got other patients to see’.

‘No – the ward is 1/4 empty. I’ve got all the time in the world. What is your biggest fear ?’

‘Well – I guess it’s been 8 months now and after all this being strong, being positive and putting on a brave front, what I am most afraid of is – it happening again. I’m just not sure I could cope with that. All that torment, the mental anguish, the tears, all of it. I’m just not sure I could be that strong again – it would break me…’

‘Ah yes – that’s a very common fear – recurrence or spread. Every cancer patient lives with that but you mustn’t dwell on that. You are cancer free and that will….’

‘Oh no – sorry you don’t understand – I’m not talking about recurrence or spread. I’m talking about City winning the Premiership’.

Seriously though, I was talking about recurrence and spread and that remains my biggest fear. You may be cancer free today and who knows you may remain so for the rest of your days but there’s always the lurking spectre of the next scan and worse, the results of the next scan.

And so our little chat continued until the nurse pushed me over the edge with the topics that are guaranteed to set me off – how my wife and children are coping. Of course, they are all coping admirably – on the outside at least – but that doesn’t stop me being consumed with guilt at having to put them through all of this.

And so, inevitably, it came to pass – the nurse who had brought me to tears with her deep, probing questions into the darker recesses of my mind exposing latent thoughts and private fears, I had been thoroughly content bottling up inside until now. The nurse now seized her moment and made her offer. The offer we all knew was coming and was perhaps the underlying reason for this little chat.

‘Do you realise you can see someone who can help you with this, someone who is a specialist in this area, someone who has dealt with tens of cancer patients like you ?’

‘Yeah but I don’t think so. That clinical psychology stuff isn’t for me’.

‘Why ? Why not ? Why would be be any harm ? Who knows – it might help. If not, then fair enough’.

And so, after months of putting on a brave face and an acting display worthy of an Oscar, I finally capitulated ‘Oh OK then – I’ll see someone’.

‘Great – that’s good. I honestly think you will benefit. Now let me see when I can get you an appointment’.

The nurse left my room as I dabbed my eyes and turned the football on on the TV.

‘Thursday August 9 – in Sutton. Is that OK ?’

‘But, but that’s five whole weeks away’.

‘Yes – I know but they are incredibly busy and you are a new referral’.

‘OK – that will be fine. Thanks’.

I made a note in my diary – ‘Thursday August 9 – remember to be clinically fed up’.

Tunnel Vision

In my job, I work as a technical consultant and try to fix problems with call centre software. Often, the root cause of these ‘technical’ problems are not technical at all but a result of poor management and lack of communication. For example, Oracle DBA’s are often excellent database administrators, developers are often very talented people, network administrators secure and manage complex network infrastructure and managers manage. Once you get all of them into a room and talking to each other, while the problem may not be immediately resolved, many possible avenues of investigation present themselves while other possibilities are eliminated. The problem is tunnel vision – DBA’s just do DBA work, managers just manage, developers just write code and never the twain shall meet (‘not my job’).

I was reminded of this during the final days of my prolonged stay in hospital. During the doctors rounds one Monday morning, we had the daily status update from each surgical team.

Urology: ‘Looking good. Kidney function normal’.

Plastics: ‘The wound is clean, healing slowly and being dressed daily’.

Surgery: ‘Bloods are excellent’.

Then, a doctor piped up – ‘Excellent. Well I think we can look to discharging Mr. Brightside towards the end of this week so we need to ensure district nursing support is available and the patient has access to any equipment needed for his ongoing recovery and recuperation…’

I was feeling very uneasy about this sudden pronouncement but, thankfully, before I could interject, the senior nurse on the ward intervened on my behalf.

‘There’s only one minor problem – Mr. Brightside can’t currently walk unaided or climb stairs’.

The surgeon replied ‘What ? He can’t climb stairs yet. Oh OK. Well can we get physiotherapy to try to help with that ?’.

And with that, the gaggle of doctors trouped out of my room.

anointing the feet of a plastic surgeon

Every morning during my stay in hospital, I was visited by three separate teams – surgical (sharp scalpels), urology (waterworks) and plastic surgery (reconstruction).

One member of the plastic surgery team – let’s call him Kieran – seemed to take a particular interest in my case. For example, while his colleagues would grunt and leave the room when I replied ‘OK’ to the perpetual question of ‘How are we feeling today ?’, he would stay behind in order to examine the wound on my rear end.

This often meant re-positioning myself on the bed which took considerable effort and exertion on my part but he simply would not be denied and normally he would look at my bottom and purr: ‘That is excellent, that is really looking good’.

I couldn’t lie on my back and if I was lying on my left side, he would sometimes politely request that I turned over to lie on my right to give him an alternative view of things. I didn’t really know why he so keen on my case; I assumed he was using me as a case study, he was just a consummate professional or a young, very keen, aspiring doctor. Either that or he was slightly weird.

Weekends in hospitals are normally very quiet and the full doctor’s rounds don’t happen and the on-call doctor just pays you a fleeting visit. Imagine my surprise, when on a Saturday morning, Kieran appeared in my room dressed in his civvies ready for his daily dose of a detailed, close up view of my backside. On his day off. Now that’s what I call dedication.

Four weeks after surgery, the wound re-opened which was unfortunate but not uncommon (35-40% probability). Consequently, the wound now had to be washed and dressed every day by the nursing team. This only seemed to further increase Kieran’s level of interest and his daily examination which now had to check on the progress of the healing process of the wound site.

One morning, after my shower, I was slowly making my way back to my bed with the aid of crutches when I suddenly felt very hot and light headed. I had to stop and crouch down before I fell down. I managed to ring the call bell and a nurse duly arrived just in the nick of time as a wave of nausea crept up on me. I looked up and said ‘Quick – please can you pass me that bowler hat ?’. The nurse looked blankly – ‘Bowler hat -what do you mean ?’. ‘The bowler hat on the trolley – the cardboard bowler hat you’re sick into’.

Finally, the nurse passed me the receptacle and simultaneously Kieran arrived in the room dressed in his white coat and purple, plastic Dutch clogs so favoured by surgeons. He look a little perplexed to see me down on the floor and asked ‘Are you OK, Mr Brightside ?’. I promptly replied by vomiting into the cardboard bowl and said ‘No – I had a shower and felt a little faint and queasy on the way back’.

The nurse passed me a glass of water to rinse my mouth out and Kieran politely enquired ‘If I help you into bed, can I have a quick look at your bottom ? Or maybe if you could just stand up’. I looked at Kieran, I looked at the nurse, I looked into the sick bowl and, inevitably, the horrible smell triggered me off and I puked again into the bowl which was now dangerously full.

Kieran withdrew a little, back towards the door presumably to keep vomit splatter off his purple, plastic Dutch clogs and said ‘OK – I think we’ll have to skip the examination today but I’ll see you tomorrow’.

At Christmas, months after my discharge I took a photograph of my buttocks and fully healed cleft, enclosed it in a Christmas card with the greeting ‘Happy Christmas from the Cheeky Boys’ and sent it to Kieran.

the shortbread finger incident

For the first few months after being diagnosed, my state of mind was pretty good considering. In hindsight, I think I was in a state of shock. Also, there were so many different appointments, scans and minor procedures that my life was quite busy and I didn’t (seem to) have much time to dwell on things.

However, in 2012 which was supposed to be the year of ’emerging victorious’, I endured three separate episodes of feeling ‘clinically fed up’ with each one being more serious and more prolonged.

Thursday March 15 was a day I had been slightly anxious about for a while. It was the final day of my radiotherapy treatment. Over the six weeks of hopping on and off a sunbed, I had got to know the nurses on the Willow unit quite well so I thought it would be nice to buy them a token gift to show my appreciation for their kindness, professionalism and good humour.

The day before, I bought some shortbread fingers (Sainsbury’s Highland All Butter Shortbread Fingers) to be precise. As I dithered over my selection, I could feel the anxiety building – just at the very thought of giving them to the nurses.

On Thursday, I treated the radiographers to another surprise – by donning my Spiderman boxer shorts. This raised a laugh and provoked some conversation on my final session. When the short 5 minute dose of radiotherapy was over I got dressed in the small cubicle and stared at the orange Sainsbury’s carrier bag. Now I felt so on edge and nervous, I even contemplated leaving quickly via the main reception without even having the courtesy to say ‘Thank you and goodbye’.

I took a deep breath, told myself to stop being so bloody stupid and get my shit together. I opened the other door and walked back into the restricted nurses area. I approached one of the lady radiographers and withdrew the shortbread fingers from the Sainsbury’s carrier bag.

The acute sense of tension I was feeling was bizarre, inexplicable and embarrassing. I managed to blurt out and mumble ‘I just wanted to give you something to say Thank you’ before it started. I started crying. A grown man crying. For no reason. The nurse looked at the biscuits, looked at me and said ‘Oh – there’s really no need for that’.

At first, I thought she was referring to the biscuits but I am now sure she meant the sudden and unexpected outpouring of emotion. A grown man sobbing uncontrollably at the nurses station with the next patient imminent.

Then things got worse, much worse – I reached out and and hugged the nurse saying ‘Thank you for everything…’. I honestly don’t know who was more surprised – me or her.

Now let me put this spontaneous show of affection into context. I have been married over 20 years and during that time, I have hugged my wife twice. One was on the birth of my first child and the second occasion was in May 1999 when United won the Champions League Final.

Thankfully, the nurse didn’t scream out ‘Get off me, you bloody pervert !’ but reciprocated. She whispered  ‘Don’t worry – you’re going to be OK, you’re going to get through this’. Which was nice but didn’t really help.

Finally, I managed to compose myself but still found time to give my favourite nurse a quick hug and some ‘Maryland Deluxe Double Chocolate Chip Cookies’ before leaving, saying ‘Thank you’ yet again and pledging to come back and see them at some undisclosed point in the future.

With hindsight, I was probably ‘clinically fed up’ around this time which explained my unusual behaviour and fragile state of mind. Of course, the underlying reason is fairly obvious – in fact, it was even obvious to me back then.

I was coming to the end of one phase of the treatment. I would not be coming back to Willow unit for my daily visits. I would not be booking into radiography reception again. I would not be seeing the familiar warm faces and hopping on to the sunbed again. I would not be listening as the radiographers positioned me exactly and calibrated the machine until they both agreed on ‘89.4’.

I was leaving this comfort zone and being forced to face the next phase and the next phase was the big one – surgery. The surgery that my original consultant surgeon wouldn’t be able to perform as it was so complicated.