crunch time

Eight months on and we now approach the home straight of this arduous, emotional journey.

Yes – the destination of the Premiership will be decided on Sunday and it looks likely that Manchester City will prevail and deservedly lift their first title in 44 years. The trophy will be presented to them – gift wrapped on a silver platter – by Sir Alex Ferguson.

In other news, my surgeon offered me a date for surgery – Thursday 17 May. As the footy season has now finished and this offers the prospect of rest and recuperation in time for Euro 2012, I gleefully accepted. As an added bonus, I will also get to watch Chelsea take on Bayern Munich in the European Cup Final dosed up to my eyeballs on morphine.

The surgery is complicated – there will be a team of surgeons and it will take 12 hours. As a man who gets queasy during ‘Casualty’ I will spare you the gory details and summarise the complex procedure as ‘They are going to remove the tumour together with most of my backside and rebuild it using just one element of my non-existent six pack’.

I am scared shitless slightly apprehensive but bizarrely the team of surgeons ooze a quiet confidence and are still targetting a ‘curative solution’ so that gives me confidence. Although it is lengthy, complex, involved surgery, they routinely perform it once a week and, for my diagnosis, have a 85% success rate.

Recovery will entail three weeks in hospital with nurses constantly interrupting ‘Homes Under The Hammer’ to take my temperature, oxygen saturation and blood pressure followed by six further weeks rest and recuperation at home filling in my Euro 2012 wall planner and carefully drafting my London Olympics 2012 viewing timetable.

waterboarding and twice daily oral

In my haste, I forgot to describe a couple of additional issues associated with my radiotherapy treatment. Although my IV chemotherapy had finished, I was given more chemotherapy in the form of pills (Capecitabine).

For this twice daily oral, the doctor insisted that the pills should be taken at 12 hour intervals and within 10 minutes of the same time every single day. Consequently, I had alarms set at 08:00am and 08:00pm to remind to swallow these toxic drugs (3 pills in the morning and 5 at night) 30 minutes after food.

The list of side effects was similar to the IV chemotherapy (the pills are very similar but dispense about 50% of the IV dosage) and thankfully, I didn’t suffer from any side effects apart from hunting down my phone in order to silence the alarm. In fact, the worst part was that grapefruit juice, grapefruit segments or a grapefruit were now off-limits as this can hinder the breakdown of the chemotherapy and result in a mini overdose. Strange but true.

In addition to the novel concept of getting oral at regular intervals, twice a day, the other addition to my exciting daily schedule was to consume 700ml of water 60 minutes prior to my radiotherapy appointment.

Now, of course, it is trivial to neck a couple of pints of beer in a hostelry surrounded by friends before you can say ‘Whose round is it ?’. However, the prospect of drinking 1.23 pints of plain, boring, cold water – just after breakfast which already included a glass of orange juice and the non-negotiable cup of tea – was not always a pleasant one. Anyway, the clever doctors know best so I just did what I was told.

As always, there is a method behind the apparent madness; consuming the water fills the bladder which helps to move it upwards and away from the bowel area leaving the radiotherapy with a higher chance of success.

six weeks on a sunbed

Today I completed my course of radiotherapy treatment which lasted for 30 days.

The radiotherapy treatment entailed lying face down, with my face supported on a plastic pad, on a sun bed while the radiographers position your body into precisely the correct position for the X-rays to hit the right place.

Radiotherapy is an very exact science and the nurses would typically spend 5-10 minutes meticulously preparing for the procedure. All I had to do was ‘lie heavy’ and relax. Occasionally the nurses would gently move my buttocks slightly as they took various readings and checked and double checked various measurements to the nearest millimetre. The height and position of the sun bed would also be adjusted slightly and I was surprised to hear that the machines would actually allow for the slight movement of the body caused by normal breathing.

In another blog, in another universe, the prospect of a pretty nurse politely asking whether she could ‘pull your boxers down just slightly’ (so she could see the marker tattoos) would be amusing but the radiography team were just brilliant – welcoming, friendly, professional, reassuring and, above all, caring.

After the positioning and setup was complete, the nurses would all leave the room, someone would hit the ‘Last Man Out’ button and a warning beep would sound 10 times before the machines buzzed and whirred into action. The treatment was very quick – less than 5 minutes before the nurses returned to lower the sun bed (‘Back to ground floor’) and it was over for another day.

The treatment is completely painless – you don’t feel anything – not even a warm glow in your buttocks. I experienced a few side effects in the final three weeks which I was forewarned about as the radiotherapy has a cumulative effect. Consequently, the skin around my rear end became rather sore and tender. However, the specialist radiography nurses gave me creams and then some wonder gel that helped manage this discomfort.

Initially, the treatment is aimed at the general tumour area and in the final week (phase 2), there is a lower dose that is targeted at the central core.

For today’s final sun bed session, I treated the nurses to a glimpse of my ‘Superhero’ boxer shorts which was very well received. As I had been treated by the same team for six weeks, I had built up a relationship with the fantastic radiography team so I gave them a ‘Thank You’ card and some biscuits to share at coffee time.

As these lovely ladies had endured looking at, and occasionally having to touch, my big, fat, hairy bottom every morning for six weeks, I felt it was the least I could do.

What next ? Well – there is evidence that radiotherapy continues to act on the tumour after treatment has stopped so I will have MRI and CT scans again in mid-April to assess progress.

Chemotherapy Comedy Awards

Enough of the boring medical updates. With the Grammy awards allocated and the Oscar nominations in, it’s time to present the contenders for the inaugural ‘Chemotherapy Comedy Awards’ where we look back at humorous moments and amusing quotes during the three months of chemotherapy.

• ‘Careful – we don ‘t want all these ladies going beserk’ after being asked to unbutton my shirt without the curtains being drawn.
• ‘Be assured, Mr. Brightside, I’ve seen it all before and so have these ladies’ – the nurse’s quick-fire response which filled the room with laughter.
• ‘It’s the secret of a long and happy marriage doctor’ – my response to a surprised doctor’s reaction to the news that my wife had already examined my backside earlier that morning.
• ‘Do you mind if I have a feel ?’ ‘No – go ahead – it’s the best offer I’ve had this week’. My response to a pretty Irish nurse attempting to rectify a failed attempt to access the portacath device.
• ‘Has the ileostomy bag been a great help then ?’ I was sorely tempted to reply ‘Not really – it was much easier to pooh out of my arse like everyone else’.
• ‘Any problems with breathing ?’ Standard fortnightly medical checklist question. The reply was always ‘Nope – I am still breathing’.

review time

After the completion of the chemotherapy, I had another MRI and CT scan to let the clever doctors review progress and plan the next steps in the treatment plan (which was scheduled to be 6 weeks of intensive radiotherapy).

The only feedback I had during the three months chemotherapy was that the ‘cancer markers in my blood were down (from 10 to 5)’ which I took as good and welcome news but it didn’t really tell me much about the state of the problematic lump in my backside.

The doctors told me that the chemotherapy had ‘been beneficial’ and there was evidence that the centre of the tumour was ‘necrosed’ (dead). When I said it was strange, the central core had been affected and not the edges, the doctor explained that the central area was blood rich and as the chemotherapy attacks rapidly growing cells, this actually made sense. Although the size of the tumour was unchanged (8 cm), the doctors also seem pleased with the way I had tolerated the chemotherapy with relatively few side effects which meant the frequency and dosages didn’t need modifying with only two delays of one week each.

To summarise, the doctors confirmed that we are still on course for a ‘curative solution’ – curing the cancer not just treating the symptoms and we will continue now with external beam radiotherapy. The sole purpose of this targeted radiotherapy is to reduce the size of the tumour in order to give the subsequent surgery to remove the tumour the best possible chance of complete success.

In fact, the doctors stressed that it is not necessarily the size, per se, of the tumour that matters. It is the areas around the edges and borders with other organs that is crucial. As the doctor said, ‘We need 5mm to be able to safely remove all of the tissue. If we get more, than that’s even better’.

I asked what the best and worst case scenarios were. The worst was ‘no reduction but this was unlikely’ while the best outcome was that the tumour would shrink away to nothing, negating the need for surgery. My ears pricked up at this prospect as this was the first time, this had been aired. However, the oncologist immediately urged caution and said this was a ’20% chance’ but not for my type of ‘mucin producing tumour which doesn’t tend to respond as well to radiotherapy’.

The next stage was a planning session for the radiotherapy where the radiologist would perform another CT scan and etch three small markers (tattoos) which enable them to align and aim the laser beam accurately into the correct area for the 30 days of radiotherapy.

cruising through chemotherapy

After the initial hiccups, the remaining four cycles of chemotherapy treatment passed (thankfully) without any further significant excitement.

After one session, I left the hospital and when I went to open my car door, I felt a strange feeling of pins and needles in my fingertips as soon as I touched the metal. This was the neuropathy side-effect I had been forewarned about. The feeling wasn’t painful – more of a surprise – and it was short-lived. In the following weeks, I experienced neuropathy quite often and it was always associated with cold temperatures; for example, getting milk out of the fridge and once, my voice went all husky when I went outside on a nippy winter’s day.

At Christmas, I had a conventional winter cold, with a runny nose, sore throat and a couple of mouth ulcers. This caused my final chemotherapy session to be delayed by one week to early January but to be honest, as I felt pretty lousy, I was almost quite relieved.

I was aware mouth ulcers were a cause for concern during chemotherapy as they appeared on the ‘Call us immediately if you get any of the following symptoms’ checklist. Inevitably, my oncologist seized on this – ‘When did you first notice the ulcers ?’ ‘On Christmas Day’ ‘Did you ring the hospital and tell us ?’ ‘Err, no’. ‘Why not ?’ ‘Well it was Christmas Day and I was having fun, eating nuts and playing Scrabble’.

The oncologist sighed, smiled and told me to sluice some white, creamy mouthwash around my mouth three times a day. The truth was there was no way I was telling my wife about the mouth ulcers let alone calling the hospital on Christmas Day and risk being summoned for a consultation or, worse, being admitted again.

Twilight Zone

Way back in August 2005, I started a blog under the pseudonym ‘Norman Brightside’, the rationale for which is described here.

I am a keen fan of football and bore people incessantly about the subject.

In August 2011, I was diagnosed with bowel cancer.

There is a UK bowel cancer charity support site, supported by various footballers, called ‘Know The Score‘ which includes and supports the ‘Mr. Brightside project‘.

Cue twilight zone music.

[ Sadly, the derivation of the Mr. Brightside project name is inevitably sad and involves the premature death of a young man who liked The Killers so don't feel obliged to go and read about that. ]

onwards and upwards

The climax of the last, thrilling episode saw me stood, in the rain, in a remote corner of a hospital car park with the dramatic Eastenders closing music playing.

I did what I normally do in these circumstances and called my therapist. He’s a lovely chap who sits on a wooden bench in the beer garden of the Pear Tree hostelry (‘Where Progress Is Measured In Pints’) clutching a pint of Hooky Gold. His pint glass is always half full. Obviously.

His helpful advice for my quandry was as direct and helpful as ever – ‘Pull yourself together, you soft get’.

‘But, hang on, that’s easy for you to say – what about my two questions ?’

‘Oh those questions, right – I’ll help you out there. Firstly “‘How did you get here ?”. Well you walked which is more then some of those people back in the hospital who are confined to wheelchairs can do, so count yourself bloody lucky’.

As for ‘Where does this end up ?’ – well 2012 may see the following events:-

• GB top the medals table at the London Olympics.
• England win Euro 2012 beating Germany 4-2 in the final.
• Manchester United pip local rivals, City, for the Premiership on goal difference in the final game of the season.
• These blog posts are collated into a best selling e-book that goes viral. You become an overnight Internet sensation and a multi-millionaire.
• You emerge victorious and find yourself participating in a sponsored rickshaw ride for a bowel cancer charity from London to Cairo accompanied by 80′s pop singer Kim Wilde, snarling Fall frontman Mark. E. Smith and roly poly Christopher Biggins.

Now be honest – which of of those scenarios is most likely to come to pass ? – the last one of course so stop feeling sorry for yourself and get back in there.

Buoyed and encouraged by this, I walked back into the hospital and retraced my steps to the ward where the lovely Irish nurse hooked me up for IV antibiotics. I got to order my ham and cheese sandwich, chatted to my friends in the chemotherapy room and dipped into ‘The Stephen Fry Chronicles’.

Later that afternoon, a room on the ward became free and, feeling like a fraud (as I felt perfectly healthy), I reluctantly took up residence for the next five days. At the weekend, I managed to negotiate day release to get home after lunch and return at night to accommodate my thrice daily 30 second injections and various medical observations.

The IV antibiotics worked their magic and chemotherapy session 2 was resumed the following Wednesday after just a weeks delay.

Discharge and Admission

Wednesday 26 October

Two days after the blood clotting episode, I drove to the Royal Marsden Hospital for my second chemotherapy session. The doctor went through the lengthy symptom checklist to gauge my bodies reaction to my first exposure to powerful chemotherapy drugs. Most of my answers were ‘No’, ‘Nothing’ or ‘None’. When she finished and asked ‘Any other symptoms or problems ? ‘, I just mentioned the ‘ongoing pain and discharge from my backside’. The doctor raised her eyebrows – ‘Discharge ? Well I think I need to have a look at that’ and so we adjourned to a consulting room.

Chemotherapy is similar to the calamari from my local delicatessen. It is made up in batches in the morning and it is expensive.

My trusted oncologist examined my naked bottom and, like tens of women before her, didn’t like the look of what she saw. She opened the door slightly and shouted out with some urgency – ‘Mr. Brightside, please cancel his chemotherapy. Now’. No chemotherapy or calamari for me today.

My heart sank as I pulled my tracksuit bottoms up and awaited her diagnosis.

‘You have an active infection in your bottom that is discharging pus. I have taken a swab and will send it to the microbiology lab. There is no way we can give you chemo with this infection present. To clear this infection up quickly and resume chemo, we need to admit you and give you IV antibiotics for a few days’.

I went back into the chemo room and pondered on this development. The Doctor came over – ‘Right, currently we don’t have a room free so we can’t admit you. However, we could give you oral antibiotics but these probably won’t be strong enough to clear up the infection but don’t worry, it’s early yet, hopefully a room will be freed up later today’.

Oddly, after all I had been through, this seemingly inconsequential news had the effect of a straw delicately placed on a camel’s back.

The brilliant colorectal specialist who first diagnosed me back in August had been unerringly accurate in every single word he uttered. These prophetic words in particular – ‘The main problem here is the risk of recurrent infection in your bottom during the chemotherapy when your immune system is compromised’ and my wife’s polite request for ‘proactive antibiotics to reduce the risk of infection’ that fell upon deaf ears.

So, after just one chemo session, this scenario had indeed come to pass. We couldn’t treat the tumour in my rear end with chemotherapy because  of a raging infection in my rear end (that was essentially the tumour).

There was only one Catch and it was Catch-22.

This was just too much. I’d come to this session on my own expecting no complications. I expected a chat with my new found friends, a ham and cheese sandwich and being hooked up for 2 hours reading a book.

I eased myself out of my chair and walked out of that damned chemo room full of poorly people waiting patiently for their expensive, light sensitive chemotherapy drugs to be made up by the pharmacy. I walked down the long corridor with the blue carpet past ladies with colourful headscarves on, I walked past friends and relatives who had just popped to the shop for a newspaper. I walked past smiling and laughing nurses. I walked past a middle aged woman who had clearly been crying while she simultaneously walked past a middle aged man on the verge of crying.

I walked past a father and son anxiously looking at signposts looking for directions to some ward named after a famous surgeon. The father wasn’t the patient – the 14 year old lad was and had no hair to prove it. I tried not to stare, bit my lip and walked out of the hospital. It was a mild, grey day and drizzling. I carried on walking past the ambulance set-down area until I reached the furthest edge of the lucrative, PCT income stream that is the visitors car park.

It would be tempting to say I looked up to the heavens and screamed ‘Fuck you, cancer’, ‘Live strong’ or ‘You can take my life but you can never take my FREEDOM’ but I didn’t.

I looked down at the tarmac, looked at the raindrops staining my shirt and briefly wished I’d put my coat on before my sudden and spontaneous departure from the ward.

‘How on earth had we got here ? And where in the name of fuck were we going to end up ?’

couple of minor setbacks

Ten days following my first chemotherapy treatment, I had suffered no side effects. Nothing. Obviously, I was pleased about this although perversely I then wondered if the chemo was actually working or I was secretly being used as a control in a clinical trial. Still, I had been told that the treatments were cumulative and side effects were more probable with each cycle.

So, Sunday 23rd October dawned and after lunch I settled down to enjoy one of the biggest football matches of the season – United versus high spending and high flying Manchester City. Mario Bolotelli opened the scoring and unveiled a T-shirt adormed with ‘Why always me ?’ I simply love quizzes so I tweeted hin immediately ‘Is it because you are a complete arse ?’

Jonny Evan’s dismissal early in the second half and a second Balotelli goal failed to lighten my mood. The wife then interrupted a stony silence with ‘What’s that rash on your arm ?’ ‘Dunno – probably just a bit hot’.

My wife then attacked me with an indelible, black CD marker pen and proceeded to draw a circle around a red blotch on my upper left arm, explaining ‘I’m a bit worried about this’. When my view of the TV screen was clear, I sighed as Aguero made the score 3-0 to City.

Minutes later, the wife passed me the phone – ‘Here’s it’s your sister’. For God’s sake, why is my sister calling me, from Brisbane (near Australia) in the middle of the footy. ‘Hi Rachel  – hang on. Isn’t it 3:30 in the morning out there ?’

‘I’m sorry but this is Sister Monaghan from the Marsden hospital. You wife tells me you have developed a serious rash on your arm after chemotherapy.’

‘Oh yes – sorry.’ ‘Is is itchy ?’ ‘No’ ‘Is it getting bigger ?’ ‘Don’t know’ ‘Can you draw around it with a biro ?’ ‘Yes – we’ve done that’. ‘Are you feeling hot or unwell ?’ ‘No’. ‘OK – keep an eye on it and come in tomorrow if it gets any worse’. OK will do. Thanks’.

Inevitably, the rash got bigger and a little more red and raised so I duly went in to see the doctor. I assumed it was an allergic reaction or one of the 17 minor side effects from chemotherapy. The doctor examined the rash and said ‘You’d better get an ultrasound scan as this might be a blood clot’.

30 minutes later, an Indian lady was rubbing clear jelly onto my left arm and probing with her scanning device. She was quiet and obviously concentrating very hard. I turned my head to see the monitor and gauge when it might be appropriate to crack the old ‘Is it a boy or a girl ?’ joke.

I saw some grainy images, some things highlighted in purple and some things pulsing. Then I saw a round, grey circle of matter that looked like a tennis ball. I lay in silence as the consultant completed her diagnostics. She wiped the jelly off my arm and said ‘I think I would like the Senior Radiologist to look at this’.

Another doctor came, applied more jelly and scanned my left arm until he also found the tennis ball structure. He didn’t seem too perturbed and summarised his findings thus: ‘Yes – Mr. Brightside, you have a couple of blockages there – one under your armpit and another on your upper arm. You’ve heard of little old ladies with DVT’s in their legs after long flights. Well you’ve got two but in your arm. Go back to Doctor S. who will prescribe you some blood thinners which will sort that out for you’.

Doctor S. was not unduly concerned – ‘Yes – this is not uncommon. Cancer itself thickens the blood as does chemotherapy which increases the risk of clotting’.

I came home with a large bag of anti-coagulant injections to be administered (x2) each evening by my lovely wife. I think she was pleased that she had diagnosed a potentially serious problem, could finally get to jab me with a needle and feel useful