A chemotherapy success story
From James Miller in Edinburgh
In Scotland, bowel cancer is the third most common cancer after breast and lung. In the Lothians around 450 people are diagnosed each year, mostly over the age of sixty. In 2006 I joined this cohort when on the 14th of June a doctor with a colonoscope up my ‘what’s it’ confirmed my problem was an upper rectal tumour. This information presented two major dilemmas. Firstly, how am I going to cope with cancer? Secondly, how to refer to my ‘what’s it’ in polite company.
While we all have the same facility, the noun of choice is a big reflection on your personality. In my book 'bottom' is too childlike, 'bahookie' too Scottish, 'arse' too flatulent, 'back passage' too tenemental, 'rectum' too anatomical, your 'anus' too astronomical, 'posterior' too Morningside, 'jacksy' too Kelvinside, 'touche' too disco and 'fundament' far too fundamental. My own preference is probably the ubiquitous 'bum'.
However, my favourite was used by my colorectal cancer nurse who, steadying me while my surgeon was eye to eye with my tumour via a delightful instrument called a sigmoidoscope, gently advised me that I was doing fine at the 'tail end'. That was a new one on me, and helped me smile for the rest of the day. Gentle, appropriate, descriptive, not a hint of rudeness and so socially acceptable.
Having resolved one dilemma, how to cope with the other. Fortunately from the outset my consultant advised that the cancer was operable and curable, which was a huge comfort. Nevertheless, I was about to go through a major life experience and it was important how I conduct myself during this trying time. After serious consideration I concluded that honesty, dignity and openness would be my watchwords, and in view of the location of the operation, a little bit of good humour would not go amiss.
As a planning consultant for the last twenty-five years my approach is one of 'can do', taking responsibility and prosecuting the problem while retaining as much control as possible. It is then carried out on one's own terms rather than conducted on a disorganised agenda.
Inevitably, you have to place yourself in the hands of the medical staff at the hospital, but it is important to accept and embrace this delegation of responsibility, rather than rail against it.
As a result of this approach, I never considered myself a victim or plumbed the depths of that unfathomable question 'why me'. True to form, I opened a project file with the title STUB 2006 as in small tumour up bum.
As a relatively young sufferer of bowel cancer i.e. under 55, I was placed on the hospital's Enhanced Recovery After Surgery (ERAS) programme which is designed to get you in and out of hospital as quickly as possible. The programme is based on the three tenets of nutrition, pain control and mobility.
In preparation for surgery, I wanted to present myself to my surgeon with a fit body and a healthy state of mind - not an easy task. I decided to get on my bike. In the two weeks preceding surgery I explored Edinburgh's extensive network of cycle tracks, occasionally stopping off for a glass of Guinness. This culminated in a great Sunday outing with two friends cycling 25 miles along the coast to North Berwick in glorious sunshine, returning home by train. Despite the prospect of major surgery and eight weeks of recuperation, I did not have a care in the world thanks the physical exertion and the sun and wind on my face.
The outcome of my relatively fit state was discharge from hospital seven days after surgery, which is good going according to my ERAS nurse. The next month I was in a fragile state, but with time, patience, care and lots of sleep, I slowly regained my strength and mobility. Within one month I was living on my own again, within six weeks I was back at work part-time, full-time two weeks later. The buggeration factor was chemotherapy, of which more later.
For most of my adult life I have lived to travel. Having visited Europe when younger, more recently I have travelled to Africa, Asia and Australia, mostly in a three-week period in the autumn. In September 2006 I was booked on a trip through China from Hong Kong to Beijing, concluding with a day on the Great Wall. With surgery scheduled for late July, the trip was reluctantly cancelled. As a result my journey changed from Asia to a return trip from home to the Western General Hospital in Edinburgh.
Following surgery, my main form of pain control in the High Dependency Unit was epidural, which is more usually associated with childbirth. During the first three days I was numb from nipples to knees, except for the second evening, when I slowly slipped into a very uncomfortable distressed state. After a few tests my anaesthetist Beth established that my epidural was seeping into my back rather than my spinal column. Without pain control and no reserves left, I was a complete wreck.
Beth promised to resolve the problem in a few minutes. True to her word she returned with a syringe, which looked rather large and menacing. She then proceeded to slowly inject a large dose of morphine into the cannula in the back of my hand. I usually take my gin with tonic, ice and lemon, so straight morphine was intoxicating. The outcome was that Beth took me on the most amazing journey from wretchedness to sublime in ten minutes. Not quite the journey I was planning for the year, but nevertheless an experience not to be forgotten.
The very word chemotherapy generates a deep intake of breath in most people. It was a real hammer blow to be informed by the hospital, less than three weeks after surgery, that I would require six months of chemotherapy. It was required as a form of insurance policy to back up the surgery and to protect my lymphatic system. This was going to be a long haul, from early September, through Halloween, Guy Fawkes’ night, Christmas and New Year, to finish on St. Valentine’s Day. A long difficult winter lay ahead.
Contemplating chemotherapy is daunting – reality is somewhat different. For a start, the nurses at the Edinburgh Cancer Centre provide the best care you could wish for with a smile, even when hooking you up to an infusion of cytotoxic drugs. A piece of advice for hirsute men – shaving the hairs on the back of your hands makes the whole infusion malarkey a lot less painful, and denies the nurses the pleasure of ripping off plasters. In addition, within the treatment room there is a warm camaraderie with fellow patients, each with their own story to tell and side effects to share.
My chemotherapy regimen consisted of eight, three-week cycles. An infusion on day one accompanied by three days of anti nausea tablets, followed by fourteen days of twelve tablets each, then seven days drug-free. Never has one week seemed so short, then wham bam back to hospital to start the next cycle. It seemed an endless grind outwith my control.
The intensive drug treatment knocks you for six, yet each morning after breakfast I would decide how to face the day, either go to work or occasionally listen to my body and return to bed. Over the six months of chemotherapy I managed to remain at work full-time, only succumbing to complete bed rest for two or three days per cycle when my bone marrow was battered and my blood counts at their lowest.
Intensive chemo results in unpleasant side-effects, the most familiar and dreaded of which is hair loss, except if bald like myself. The latest drugs are less prone to inducing severe side effects, and in the main most are bearable. Conveniently the hospital provides a diary in which to record and track your experience of ten potential side effects including nausea, hair loss, mouth ulcers, constipation, diarrhoea, pain and sleepiness.
Over the eight cycles the side effects progressed from none or minor to moderate, with only one venturing into the severe category. The worst side-effect kicked in during the sixth cycle when I developed peripheral neuropathy, resulting in numb hands and feet due to damage to my nerve endings caused by the infusion drug ‘oxaliplatin’. In response the infusions were stopped and replaced by an increase in my tablet regimen. The peripheral neuropathy should disappear within the next six to twelve months. I could also mention erectile dysfunction and Viagra, but that is a whole different story.
Over the duration of my chemo I had six infusions and consumed some 1600 tablets. Despite this heavy drug load I worked, rested and played. My intent to keep my life as normal and pleasurable as possible allowed me to enjoy my regular winter series of orchestral concerts with the RSNO, meals with friends, project work with colleagues and celebrations with family. My focus on maintaining normality left little room to dwell on my predicament. Yes, it was hard work, mentally demanding and physically exhausting, but I managed to negotiate my way through a difficult six month period with a smile and occasional laugh. This approach also helped avoid the onset of depression, a not uncommon occurrence with patients on chemo.
The conclusion of chemo comprised a CT scan and consultation with my oncologist in mid-March. After reviewing my case notes, a friendly digital inspection of the wound and a few questions on my physical condition, my oncologist confirmed her satisfaction with my treatment, uttered the immortal words ‘all clear’ and advised that I get on with the rest of my life. At that moment I resisted a strong urge to kiss my oncologist, restricting my expressions of thanks to a warm handshake and a sentence or two about the depth of my gratitude to the staff of the Cancer Centre.
I recall that my sister-in-law and I whooped with delight and relief as we exited the building. The rest of the day was a blur of phone calls and emails to family and friends and an impromptu drinks party organised by my colleagues at work. That day I was nearly as high as my journey on morphine nine months earlier.
Throughout my recuperation and chemotherapy, I drew great support from family and friends, who ensured I was comfortable and in good spirits. What I really appreciated was the ability of close friends to assume roles and to deliver on their responsibilities.
My favourite was a business colleague who decided to assume the role of a big sister. I have a brother, so it was interesting to acquire a sister in my early fifties. My new big sister, concerned for my health and well-being, had this wonderful ability to ask a tirade of questions designed to give me a guilty conscience.
Are you drinking two litres of water a day? Are you taking milk thistle to support your liver function? Are you taking your Vitamin C tablets? Have you bought a juicer yet?
One day at a business meeting in Glasgow she asked how I was feeling, to which my response was 'really rough'. On that occasion, my big sister's advice was that occasionally it is necessary to stop the bus, get off and go sit in the park. Following her advice I parked myself in bed for the next four days with total fatigue, then bounced back to work refreshed. Needless to say, I am still subjected to a barrage of questions and retain my guilty conscience. Is that not what big sisters are for?
Early on in treatment a retired GP highlighted the benefits of massage to counterbalance the physical trauma of surgery and chemotherapy.
A few days later I found myself in a softly lit, warm, scented room with mellow music drifting through the air, lying on a padded table with a strategically placed towel protecting what little dignity I had left. Having discussed my condition with my masseur, I closed my eyes to drift off into another world.
Touch has powerful therapeutic effects on body and mind. The effleurage reconnects the brain with the myriad of muscles, tendons and sinews around the body, inducing an innate tactile pleasure and deep relaxation. Like some pieces of classical music, massage has that rare ability to touch the soul. I always walked home with a healthy glow and a spring in my step ready to face the next round of chemo.
As you can appreciate, bowel surgery and chemotherapy can wreak havoc with the digestive system, and I have experienced the full gamut of responses. After a few months it can all get a bit tiresome.
When a close friend asked what I would like for Christmas, I explored the limits of my imagination and requested a long desired gift, albeit somewhat difficult to wrap. The best way to communicate my request was to improvise on a traditional Christmas song, my variation having the opening line 'All I want for Christmas is a nice firm stool'.
Guess what, I was still looking for the same gift with my Easter egg. I suspect that next Christmas may be a more realistic timeframe. But what joy when it arrives.
When you emerge from the shadow of chemo people ask about the experience and inquiry about how it has changed my outlook on life. My response was that my main ambition was to get every part of my life back together again after being so rudely interrupted by surgery and chemo.
On receiving the ‘all clear’ it was time for a holiday, the first in a year. Despite still feeling some of the side-effects there was a call for some adventure, so in late April a good friend and myself boarded a flight from Edinburgh direct to Atlanta, Georgia. From there we travelled to DeBordieu Island in South Carolina for a week with American friends in a traditional wooden beachfront villa with views and the sounds of the ocean.
Our days consisted of relaxing in the sunshine on the beach, swimming, flying kites, eating fresh fish and drinking Californian wine and Auchantoshan malt whisky. It was the perfect antidote to six months’ chemotherapy. Yet it was the shared laughter that suddenly made me feel happy. Although the chemo was at times gruelling, I was never consciously unhappy, it was a case of head-down to get through it. At the beach the weight of the past nine months was suddenly lifted and, like an exercise-induced endorphin rush, I was awash with a feeling of euphoria. Suddenly chemo was all in the past, now it was time to look forward and plan for the future. I retain that wonderful feeling to this day.
Approaching the tail end of my story you may be wondering about the title. Following surgery my oncologist identified the need for chemotherapy, a decision taken to eradicate the cancer and minimise the risk of its return. My decision was to accept its requirement, embrace it, recognise it would be a real pain in the butt and accept the prospect of an unpleasant six months, yet navigate through it on my terms, all the time listening to and respecting the physical needs of my body. By choosing chemotherapy I am now enjoying the pleasure of living free of cancer. In the story of my life the recent chapter on bowel cancer is now firmly closed. The current chapter is contemplating the prospects of a belated walk on the Great Wall of China. I cannot wait.
In March 2007 NHS Scotland rolled out a national bowel cancer screening programme, targeted at people between 50 and 74. With some 650,000 test kits due for circulation, there is no excuse for sitting on the problem. If you become aware of any change to your bowel function, get it checked out. Screening can lead to early detection, and as demonstrated in my story, it can be very treatable and survivable.
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