The Scan and The Results

The first week of my eighth year as a cancer patient has featured anxiety from the past and worries about the future. It started with a CT scan, my sixth since a tumour was successfully removed from my abdomen twenty months ago. The pathologist found that this tumour had a very slim margin of normal cells around it; only one millimetre, a dangerously narrow margin and far below the recommended surgical limits. Allied to this is the fact that you don’t feel a slow growing tumour when it is small. And it also doesn’t show up well on a scan. I didn’t have pain from either of my tumours until they had grown to maturity and were over six centimetres across. At scan-time these worries cannot fail to prey upon your mind and interrupt your sleep in the small hours.

Actually having a CT scan is nothing much; on the scale of painful and unpleasant things done to you in hospital it is at the low end. You have to arrive at the Cancer Centre one hour before the time of your scan. You sit in a waiting room full of people coming for scans and drink a clear fluid filled with iodine (and other stuff) that enhances the images. You have to drink two litres of the fluid, one paper cupful every ten minutes. Despite the room being full, it is deathly quiet; nobody speaks, we are all in our private places of fear. The only sounds are new patients arriving, jugs of fluid being dispensed and patients being called. I sit, sip and read my newspaper. Others surf the internet. Some stare into space.

When called, you are taken into a changing cubicle where you remove your clothes and anything made of metal and put on a surgical gown. The radiographer takes you into the scanning room next door. The CT scanner is shaped like a large ring doughnut with a long slim bed that slides you inside it. The scanner costs about a million quid. A scan takes around ten minutes. The bed slides you through the scanner and an automated voice tells you to hold your breath for some of the passes and to breathe on others. The scanner whines and howls like a gale as it spins around you. Then it is over and you can go.

The first thing I do is get something to eat and drink. You aren’t allowed to take anything for six hours before the scan. I ride the lift up the hospital tower to the staff cafeteria. The food is cheap and fatty. It’s remarkable how bad the food is for people who are charged with keeping us healthy. Off-duty, hospital staff could well be far unhealthier than us. Like many others, I indulge in a greasy fry. It hits the spot. As I slurp baked beans and chew my sausages, the worries begin in earnest. I have entered the worst and most disempowered stage, the anxious waiting for the scan results.

Normally you hear the results at a review appointment with the Oncologist, which takes place a couple of terrible weeks after the scan. As it is hospital practice to send out appointment letters two weeks beforehand, you usually get the letter for the review appointment around the date of your scan. I went home. There was no letter from the hospital. I waited anxiously for a couple of days. Then I rang the Oncologist’s secretary. You always get the answer-phone. I left a message for her to call me. She rang back the next day and told me that my scan had been done several weeks early and no appointment had been booked for me yet. She told me she would request an urgent appointment, but that the review clinics for the next month were very full. My heart sank and my worries spiked.

Several sleepless nights and unhappy days later, the Oncologist’s secretary rang me (after I had again left her a message). The good news was that she had a got me a review appointment, the bad news was that it was in a month’s time. Again my heart sank. But, she went on, she had spoken with the Oncologist and they had dictated a letter to me. She read it out. The crucial part was that the Radiologist had concluded that my scan was ‘stable’ with ‘no discernible change’. My heart leapt. I thanked her profusely. She had understood my problem and because of the long delay in me actually seeing the Oncologist had found a way of breaching the hospital protocol about not giving results over the phone. I suddenly felt very relieved and extremely exhausted.

Copper Anniversary

Seven years ago today I was in Belfast City Hospital. I’d gone to A&E the night before after becoming unable to pee. I waited for a long time in severe pain with assorted drunks and men with head wounds handcuffed to coppers. The doctor put in a catheter but nothing came out, so he got a large syringe and drew out bloody urine with dark clots in it. I spent a long and sleepless night on a trolley, worrying about what was wrong with me and wondering why my life was cluttered with stuff that didn’t really matter. First thing in the morning a doctor from Urology arrived and decided to admit me.

Later that morning I was taken on a trolley for a CT scan. I was back in the ward when a different doctor arrived and drew the curtains around us. I had cancer, he said. He was quite matter of fact. I went into shock. It was a large tumour that had taken over the whole of my left kidney and grown further. The world seemed to close in around me. Do you have any questions, he said. So I’m going to die, I mumbled. Not necessarily, he said, plenty of people survive cancer these days. So what are my chances, I said. I’m afraid I don’t know, he said, and left. It was Good Friday. I lay on the bed for a long time. I was sure my life was at an end. I felt completely alone and didn’t know who I could turn to. My younger brother had died of cancer less than a year earlier. Eventually I picked up my phone and began to tell the bad news. I started with my, then, partner Joanne.

To cut a very long story short, my tumour had grown from the kidney into the vena cava and up towards my heart. I needed a very big operation, open heart surgery, to remove it. I was in hospital for three weeks during which a series of preparatory operations took place, whilst I waited for the big one. Joanne, friends and family rallied round. I had plenty of visitors. I also had to cancel all the Irish and British dates on my book launch tour that I’d spent so much time arranging (my first collection of poetry had been published a few months earlier).

After three weeks I was discharged from hospital. I was waiting for a slot in one of the three cardiac operating theatres at the Royal Victoria Hospital. A call could come at any time. I was told that I was in a delicate condition and should take things very easily. Joanne encouraged me to live at her flat in Belfast. At first this was fine. Then she began to show signs of disturbance. After four weeks, she had a mental breakdown. I had to look after her and arrange for her to get professional help. Then I went home to my own house and waited. After a week the call came. I was admitted to the Royal, signed all the disclaimers; the main risk was death during the surgery from loss of blood. The operation took seven hours with three teams of surgeons and I had three blood transfusions. Thankfully the tumour was successfully removed. I spent a further two weeks in intensive care and on the ward. I returned home, very incapacitated and in severe pain (which would last for over a year) but I had survived this ordeal.

Not long after I was called to see an Oncologist at the Cancer Centre. They told me that my prognosis was poor. Many people who had the large tumour that I had would not survive the first two years. This was a heavy burden that dragged me down. Joanne had come out of treatment and visited me regularly, along with friends and family. After a couple of months Joanne abruptly left me and I was completely on my own again. I found myself in a very bleak place. Slowly I realised that I couldn’t cope and turned to a cancer charity for help. Cancer Focus arranged counselling. This was a lifesaver. I learnt that I wasn’t alone and that the complexity of emotions I had were entirely normal for a cancer patient.

This became the turning point. After a year of counselling and recovery I began to rejoin the world. I started to pick up a few of my activities again. The two year anniversary of the big op came and went. And I was still around; alive and doing my best to kick. Shortly after I went to the John Hewitt Summer School, where I first met my dearest T.

A crisis shows you exactly who and what is important in life. Plenty of activities and former friends have fallen by the wayside. But what remains is deeper and more valuable. I do my best to spend time on what matters and not to waste it on what doesn’t. Primary amongst all of this is my dearest T, who is the best thing that has happened to me. I met her at a point of growth and redirection in my life and we have travelled far and deep together. Seven years is called a copper anniversary. And copper is the metal of good fortune. I thank my lucky stars that I am where I am in my life now and that I am with T. We live happily together in the here and now. Long may that continue.

Cuddle Therapy

We’re not long back from an extended Easter break over the water that was full of good things. We started in the New Forest and then drove a couple of hours along the coast to Brighton for a wedding. I hadn’t visited Brighton for ages and T had never been there. It certainly seemed to have become a very alternative town. The groom was the only son of my best friend, Phil, who I’d first met at secondary school. The groom, Nathan, and bride, Laurie-Ann, had been going out for a decade and living together for six years. They very generously had arranged for us to stay in their home over the weekend.

On the first evening we walked into town with Phil’s brother Terry and had an amazing meal at a vegetarian restaurant called Terre a Terre; a cornucopia of flavours put together most attractively. On the way back we paused at an alternative therapy centre and marvelled at the range of treatments and therapists on offer. The most intriguing was Cuddle Therapy, where you could spend your time with the therapist either talking about obstacles to physical contact or actually having cuddles.

I wondered how long it would take for Cuddle Therapy to become established in NI. We agreed that who you were actually cuddling was the most important consideration. T and I cuddled regularly everyday and always before going to sleep. It was a crucial part of our life together. We had both lived on our own and understood how lonely that can be. On the other hand, there were plenty of people I would pay good money not to be cuddled by; Boris Johnson, for example.

The wedding took place in the village of Firle in the midst of the attractive South Downs. It is an estate village and looks little changed from centuries before. Virginia Woolf once lived there and it became a hangout for the Bloomsbury Group. The ceremony was humanist in style; I gave one of the readings, ‘The Summer Day’ by Mary Oliver. The vicar was Peter Owen-Jones, who is also a poet and broadcaster. We walked from the Norman Church past banks of primroses to the lawn of the Manor House for champagne. The weather was cool, so after photos we went into the stables which had been converted into a large hall complete with oak beams.

After the speeches we had an enjoyable Mediterranean meal of kebabs, falafel, salads and flatbreads. I tried a glass of wine; the first since Xmas when my stomach, after all the cocodamol drugs, had a bad reaction to it. I was delighted to find no painful reaction, so I tried a couple more. Unlike many of the guests, I didn’t indulge in the free bar. But T and I danced happily with them to the live soul band. It was a lovely day. And a poignant one. Phil’s wife Jean had died of cancer almost five years previously. Her absence was keenly felt by all those who knew her.

The next morning we wandered down by the Pavilion and along the pier. We saw several groups of elderly Mods in parkas with roundels, but no Rockers. Perhaps they now only clashed for the overseas tourists in a sham-fight, like at Scarva. Then it was back in the car to the New Forest. And the very next morning we drove through heavy traffic to Hungerford for a family lunch that I’d arranged. Meeting up at the excellent Mediterranean restaurant Eliane were my brother, sister and several cousins. All in all we made a table of eleven. I hadn’t seen some of them for four years or more. We had a great catch up, took photos of each other and hugged before going our respective ways.

The purpose of our time away was to meet up with close friends and family and be part of a happy celebration. I guess the whole trip had been a type of Cuddle Therapy. So especially we’d like to wish Nathan and Laurie-Ann many happy years of cuddling together.