Appointment with the Oncologist

The Cancer Centre has self check-in. You input your sex and date of birth at a terminal and the system puts your details on the screen. You confirm them and your appointment appears on the screen. You confirm it and a ticket is printed with your number at the bottom. You take the ticket and go into the large waiting room and find a seat. It has comfy chairs. But the people there are not sitting easily.

No-one makes eye contact and hardly anyone is speaking. Most people are sitting blankly, staring at the panel on the wall which scrolls through the list of the consultants in the clinic today and the average waiting time for each. Then a number flashes onto the screen and a voice says ‘will patient number x please go to room y.’ All the patients in the waiting room glance at their tickets. Someone gets up and enters through the double doors that are opened by a push button at the side.

I wait for about twenty minutes, and I am called. Beyond the double doors is a white hospital corridor with a series of numbered rooms with closed blue doors. A slim young woman about half my age is standing outside the door that I have been called to. I haven’t seen her before. She introduces herself as my consultant’s registrar, escorts me into the room and asks me to sit beside the desk. An even younger man with a wispy beard is sitting in the corner. She says he is a fourth-year medical student and asks me if I mind him sitting in on our review meeting. I give a weak smile and say that I don’t mind.

‘How are you feeling?’ says the registrar.

‘Okay,’ I say, sitting stiffly in the chair. ‘I’m just over a bad cold.’

She nods and glances at a file on her desk. ‘Well, your interval scan shows no appreciable change.’

I gulp. ‘So there’s nothing sinister been found?’

‘No,’ she smiles, ‘not at all’.

‘That’s great’. I sigh and notice that my hands are clutching the arms of the chair.

‘It’s much the same as last time,’ she says.

‘Thank you.’ I smile and begin to relax my grip.

I ask for a copy of the scan report and she prints one off. I read through it and ask questions about statements I don’t understand. She explains the medical language to me. Apparently I have a gallstone. But don’t worry, she says, many people have them and they don’t cause any trouble at all. And I have an enlarged prostate. But that’s also normal for someone of my age, she tells me.

I finish my questions and she asks to examine me. I take my top half off and lie on my back on a paper covered couch behind a screen. She places one hand on top of the other and presses them into different parts of my abdomen whilst looking intently at my face. I feel no pain and tell her that I only have twinges when I use my abdominal muscles to sit up. The medical student watches from the end of the couch. She asks me to sit up. I lever myself up with my arms. She takes the stethoscope and listens to my lungs. Then she stands behind me and feels around my neck and under my chin.

That’s all fine, she says, you can get dressed now. They leave me behind the screen. When I come out, she is sitting at the desk looking at my file. The medical student is back on his chair in the corner. I return to my seat beside the desk. She looks up and tells me that I will be scanned again in three months time. I thank her. I explain that had been worrying that they might extend the interval this time. We’ll keep a close eye on you for the first year, she says.

I thank her again and leave. Out in the waiting room, the fear in the faces that are staring at the screen is plain to see. I wonder if they can see the relief in mine.

Waiting

The name for a person undergoing medical treatment is a patient. This is well chosen, for most of the time you are waiting and worrying. You wait for a scan to check whether the cancer has returned. Then you wait for a review meeting with the consultant to hear the results of the scan and to decide what the next step in your treatment will be. I had my CT scan last week and I meet the consultant next week. In the time in-between you feel that your life has been paused.

You try and cope with this anxious waiting by only thinking ‘one day at a time’. Or when the stress is particularly bad, you break it down even further and only think - one morning, afternoon, evening and night at a time. The date of the next event in your treatment becomes the objective. You do your best to get there as unscathed as you can. And only then can you allow yourself to think beyond it.

Family and friends ask normal questions like – what are you doing for Easter? And you can’t really answer because that is so far in the future, well beyond your next treatment date. If they ask – why? Do you say that your life could have changed before then because you might have heard that the disease had come back? And Easter would become irrelevant.

The in-between feels like treading water in a stormy sea. You are desperately trying to keep your head above water. You are spluttering and gasping. You are looking from side to side, trying to sight land. The sea sways and foams around you as far as you can see. Your feet and arms keep thrashing. You are in a sort of suspended animation. Time passes slow and fast. Your past and a whole host of possible futures spin before you. You blink and gasp. The sea sways on.

Sleep is often broken and unrefreshing. Sometimes I wake more tired than when I went to bed. The night is filled with exhausting dreams. Before the scan, my dreams were filled with strange episodes in which I would end up being stabbed or bitten. I woke up clutching my wounds. Since the scan, my dreams have been filled with surreal episodes in which family and friends have been haphazardly put together in bizarre circumstances. I wonder if I am working through a jumble of odd memories and characters from my past.

I don’t know what I would do without T. She is my bedrock, my trusty companion on this awful journey. Despite her own stresses, she usually finds a cheerful word or a hug to help me come out from my watery sojourn. I hold her hand and, with a sigh of relief, step onto solid ground for a while.

Surveillance and Surgery

I have a cancer surveillance CT scan next week. This will be the second scan since my recent surgery to remove a tumour. The first scan in November was, thankfully, clear. The second is worrying because any cancer cells that may have been left behind by the procedure have had time to grow and are likely to show up on the scan. My fingers and toes are crossed. Although, whatever happens, I know I’m going to end up back in hospital.

If I get the all clear, as I fervently hope, I will then be scheduled for surgery to repair a problem that was caused by the very major surgery I had in 2011. This opened me up from neck to groin and a very dangerous tumour that had grown from my left kidney into my vena cava and almost as far as my heart was safely removed. The surgery involved three teams of surgeons, took seven hours and I had three blood transfusions. It saved my life but a mistake made by one of the surgeons left me with a problem, a hole in my diaphragm on the left side. Since then my stomach has become embedded in my diaphragm and has been pressing onto my left lung.

Due to the dangerous nature of the tumour, I was told that I had only a 30% chance of surviving the first couple of years. On top of that, it was a very difficult and slow recovery, physically and emotionally, from the big operation. I was certainly not ready to have more surgery to repair the hernia. And by the end of those oppressive two years I had become used to managing the hernia problem. Years of running and mountaineering had left me with strong lungs, so only having the use of one and a half lungs meant that I was still capable of many activities. I also learned that I mustn’t try and combine eating with doing any activity, as a filled stomach severely handicapped my breathing.

Then I developed late-onset asthma. My pulmonary specialist’s theory was that I had always had very mild asthma, which was masked by my high level of fitness. And my asthma had become exacerbated by my lung being under stress due to the hernia. I began to use inhalers and again adapted to this limitation. Then I talked to a thoracic surgeon about the repair of the diaphragmatic hernia. He explained that this was major surgery, my ribs would be split open on the left side and the stomach delicately cut away from its attachments to the diaphragm, then the diaphragm would be repaired with a polypropylene mesh. I would need around ten days in hospital, followed by three pretty painful months of recovery.

I was mulling over this uninviting option when I had the first of my cancer recurrences, eighteen months ago. The hernia repair was put on the back burner whilst I had the first abdominal surgery to remove the tumour. In hospital my left lung collapsed due the overinflation of my stomach which pushed up through the hole in the diaphragm like a balloon and compressed the left lung. I was told I must have the hernia repaired as soon as I had recovered from the abdominal surgery.

But, last June, at the point of being scheduled for the thoracic surgery, I had my second post-surgical cancer surveillance scan. This showed that the tumour had regrown from the same site. I then went in for more abdominal surgery to remove the tumour and had another lung collapse. Late last year I met the thoracic surgeon again and agreed to have the surgery to repair the hernia.

If my scan is all clear, I will soon be going in to the Royal Victoria Hospital for major surgery. If it is not, then I will be going in for whatever treatment is required. It is a time of great anxiety and poor sleep. I seem to have regular nightmares in which I am being stabbed or bitten. It’s not easy for either of us. We go forward one day at a time.