Smiling Hooks

Studying for my first degree

Submitted the the brilliant Voices of Survivors website, April 2010

After recovering from testicular cancer and its complications, I, like many survivors, was faced with the realisation that life is as short as it is sweet, and with the desire to use my time well. I guess the sudden awareness of one’s mortality tends to focus the mind. I decided to follow a dream, and take a degree in English literature. I had the time of my life. It was through my studies that I discovered the work of the great American poet, Sylvia Plath. Her poetry became very popular after her suicide in 1963, and so her work is often read in the light of her problematic life and untimely death, though many feel it has a great deal more to offer than simple clues to explain her mental and emotional state. One poem, ‘Tulips’, resonated with me. In it Plath describes her body as a “pebble”, moved by external forces and tended by others, existing independently of her own will or volition. She also speaks of photos of her family as “smiling hooks”, which catch on to her skin and pulling and willing her back to life, though she is unwilling to follow…

I became seriously ill very quickly. On the previous day I had seen my oncologist who had said that, two weeks into my chemotherapy, I was doing really well. The following morning, we had left home for the hospital, where I was to receive a one hour infusion of Bleomycin - one of the chemotherapeutic drugs that were saving my life from the cancer which had begun in my testicle, and travelled to my abdominal lymph node, lung and possibly my neck.

I had arrived feeling fine, and sat as before in the reclining chair, ready to receive the treatment, a quick one hour infusion into a vein in my arm, after which I could go home. I was surprised at how quickly things moved. My temperature was taken, and was found to be raised. It was a sign that I had some kind of infection. As was to be expected at this point in my treatment, the level of my white blood cells was also low, so I had little reserves with which to fight any infection. I was asked how I felt, and realised that I was feeling very weak – beyond the weakness and fatigue that one expects during chemotherapy. I was admitted to a bed on the hospital ward, and then quickly moved to an isolation room. A large yellow sign on the door warned potential visitors that they were not permitted to enter, for fear they would pass on some innocuous germ which, in my depleted state, could kill me.

By the time I entered the room, I was very weak. I wouldn’t say that I was unable to move – possibly I could have done so if I had wished, but I had absolutely no desire to move or do anything. My only wish was to lie quietly and peacefully. As I was placed onto a bed, I was dimly aware that people in another room were making a loud noise. I may be wrong, but I recall the sound as wailing and shouting – perhaps someone’s grief for a patient who had died. My wife and mother, who were with me, were concerned and annoyed that I should be disturbed in this way, and asked the nurse if this noise could be stopped. The last thing I needed, they felt, was a disturbance like this. For my part though, I didn’t care at all about the noise. As long as I was permitted to lie still and was not required to move, then – live or die – I was content. I felt calm. If I was to die, I felt complete acceptance. It felt right.

My wish to lie still was not to be granted for long. Against my inclination, I was put into a wheelchair and pushed through the underground labyrinth which connects the Oncology Centre with the larger infirmary in Bristol. As we travelled, my head lolled about, unsupported. Again, I may have been able to hold it up, but why bother to try? We arrived at the x-ray machine which was to be employed in trying to discover any signs of the source of the infection. I was almost unable to stand to be x-rayed. As I half stood at the machine, my hands – which the radiologist had requested I put on my head – hung lazily at my sides while my knees could not straighten to stand my body up straight. Rather than stand behind a radiation-proof screen, as is customary, my wife Kath remained with me and held my body in position. I don’t remember the trip back to my room.

I was in hospital for ten days in total; seven for the infection, followed by three for the next round of chemo. During that time, the doctors kept the infection at bay by administering broad spectrum antibiotics intravenously, until such time my natural immunity recovered to the extent that it could fight the hidden enemy. After a few days, I remember lying in bed feeling bored, and then feeling delighted that I was well enough to have such a feeling.

A year or two later I had no time to be bored. Spending my days in the historic city of Bath studying great poetry was a dream realised, and I enjoyed and savoured every moment. So it was that I came across Plath’s ‘Tulips’. As she describes a hospital stay, her body is likened to the pebble, moved around by outside forces just as mine was moved – unaided by me and independent of my own volition - along the labyrinthine paths to the x-ray machine. She describes the feeling of “learning peacefulness, lying by myself quietly” as I felt peaceful for as long as I was undisturbed in my bed. “The peacefulness is so big it dazes you”, she said.

She also describes her “husband and child smiling out of the family photo; / Their smiles catch onto my skin, little smiling hooks”. In the same way, my family forced reactions from me that I – in my peaceful and accepting state – was unwilling to give, but were necessary for my recovery. But for them, I would have been content to lie still in my bed and drift away.

Plath states, simply, ‘I am nobody’.

Thankfully, I am somebody. I did not become the non-person that Plath did. My family - my smiling hooks - and the medical profession carried on the fight in my name while I was incapacitated. Through their endeavours, I escaped the fate that I had accepted, but which they – thankfully - did not accept. I survived to enjoy and savour my time at university, and to read and understand the words of Sylvia Plath.

It is to my smiling hooks that I owe my recovery, and to Plath I owe my understanding of that debt.

My Voice

Written for the amazing Voices of Survivors website, and published in December 2009

I don’t feel I can take much, if any, credit for my survivor status. I don’t feel I won a battle with cancer; a battle did take place, but it was fought on my behalf by others with me as a passive beneficiary. The others are the real heroes of the story. To be a hero, you have to have options. You have to choose between a safe unadventurous path and a dangerous but noble path. You have to be faced with the option of jumping in the lake to save the child or watching helplessly from the bank. No-one will blame you if you say “there was nothing I could do”, but if you jump in and try to save the day, then – successful or not – you’re a hero.

That’s why the real heroes of my survival are the doctors, nurses and researchers who designed, managed and administered the life-saving treatment, and the family and friends who sustained me through it. Whereas I had no choice about contracting cancer, and no real option other than to endure the treatment, the medics made a conscious decision to follow a career which led to my cure. Likewise, my friends could choose between picking up the phone and saying, “if there’s anything I can do, just say”, or doing nothing. No can blame those who felt there was nothing they could do, and therefore didn't offer, but those who made contact are heroes. Likewise my family.

A seminal point in my cure took place in 1974, when I was seven years old. My cancer was diagnosed in 2001, but the breakthrough which lead to the fantastic cure rate that patient of testicular cancer now enjoy took place when I was learning my six times table and reading about the adventures of Dick & Dora. At Indiana University, Indiana – thousands of miles from my home in the South West of England – a young oncologist called Lawrence Einhorn was treating John Cleland, a patient with testicular cancer. His disease was progressing and the situation looked hopeless. Testicular cancer was a brutal killer. The overall cure rate was around 10%, and there was almost no hope for patients with metastatic disease. Cleland asked if there was anything else that they could try, and Dr Einhorn agreed to administer an experimental drug called Cisplatin. The result was, in the words of Dr Einhorn, “spectacular”. Cleland survived and is alive today, and the outlook for patients with testicular cancer is transformed. The survival rate has soared to almost 95%. Dr Einhorn is a hero.

David Dickerson is another hero. He is a urologist at my local hospital, and he positively diagnosed my cancer with an hour of our meeting and then removed my cancerous testicle; so is John Graham, the oncologist who detected my relapse and prescribed the chemo which saved my life. So are Emma Bryant, and the other oncological nurses who administered the chemo.

When I first took my lumpy testicle to my GP, I was examined and told that I had nothing to worry about. That’s where the heroism of my wife and my mum begins. It was they who would not allow me to leave the matter, and persuaded me to get the ultrasound that I needed – without that I would have waited another twelve weeks for my “non-urgent” scan. I dread to think what the result would have been.

So I have been the subject of a mighty battle, and many have distinguished themselves in the battle. Their only prize is that I get to live. Although I had no option other than passively allow my personal army to fight the battle for me, I am now a survivor, and therefore I now have options. With options come possibilities. One can choose to stand on the bank, or to jump in the water.

The challenge for a cancer survivor is to be worthy of the gift that he is given, to be a worthy beneficiary of the battle that others have fought on their behalf. One way to do that is to make something of your life. Before my illness I rarely chose a path for myself. Indeed I rarely made any decisions about the direction of my life, but preferred to allow life to simply happen to me. That has changed. Following my illness, I began to make decisions about my future. I went to university and gained a degree in English, and loved it so much that I stayed on an extra year to get a Master’s degree, which I am very proud of. Also, I try to do as much as I can to give something back to the cancer community by helping and sharing my experience with people who are about to go through what I have been through, and I have taken part in fund-raising events – a truly inspiring experience.

Recently I achieved my dream of becoming a teacher, which was the first goal that I set for myself when I took stock of my life after my recovery. I will never forget delivering a lesson about biographical writing to a small class of fourteen year olds who were not accustomed to listening to me. A PowerPoint showing a selection of possible heroes on whom they could base their writing really captured their attention. My normally noisy and inattentive pupils were perfectly silent as I showed them a number of candidates. Among the pictures of Mandela, Kennedy, pop stars and sportsmen I also included pictures of a surgeon, Dr Einhorn and my personal hero, Mike Peters, singer with The Alarm and founder of the Love Hope Strength Foundation.

Our heroes inspire us to action. They spur us on to be worthy of the gifts that we have been given, and they can be the yardstick against which we judge our own actions. More than anything else, they show us that heroism is about choosing the riskier but nobler option.

To me, survivorship is about striving to be worthy of the battle that others have fought on our behalf.

My name is Nick, and I am a survivor.

Introduction and Voices

Following the publication of my essay about survivorship on Lynn Lane's brilliant website Voices of Survivors, I am creating a new blog for further writings on the subject.