Wednesday, 22 March 2017

Thankful for Small Irritations

It has been a normal week. Nothing dramatic has happened to us. Admittedly, there are plenty of small irritations in our lives which cause discomfort. But that is normal too. The smooth flow of life without setbacks is an illusion, perpetuated by lifestyle product advertising. Like most people, we do our best to live with the irritations.

My dearest T is getting accustomed to her breathing machine and it’s helping her a lot, although some nights it works better than others. The problem seems to be with the fit of the mask. During sleep it can be partially dislodged, meaning that the flow of air goes across her face rather than into her mouth to keep her airway open. On the bad nights she hasn’t slept properly due to apnic episodes and is very tired in the morning. She is experimenting with different pillows and has requested a different mask from the hospital.

I am still waiting to see the surgeon about my diaphragm repair. He agreed to delay the surgery until after my scan result was known, but also said that he wanted to see me again before the procedure. That was the best part of a month ago. I’ve rung his secretary to find out what is happening but she doesn’t know and wasn’t able to find out as the surgeon was away. So I feel I am dangling again, having to prepare myself for another hospital admission but having no idea when.

I ought to be used to this situation, given how often I’ve been here over the past six years. But I still find it frustrating and disturbing. As a cancer patient in the NHS, you always seem to be inbetween scans, treatments and reviews. It’s more a permanent state than a transitional one.

When I was first diagnosed, surviving to five years was the big objective. But that is an artificial target. Statistics on cancers and patient survival are only kept for five years. And many cancers, mine included, are known to recur significantly beyond this deadline – even decades later. So you are never really free of the threat.  

But surviving is what matters. All around us are many examples of the opposite: from famine in four countries in Africa caused primarily by wars, to the sudden deaths of family members, friends and acquaintances.

A group from Concern recently came back from the Central African Republic. It is the poorest country in the world, according to UN statistics. This large country, eight times the size of Ireland, has just 5 million people. They reported that outside the capital city there is no basic infrastructure: no roads, no water and no electricity. Most people get by in small-scale subsistence agriculture. There is no famine at present, but they are stuck in grinding poverty with many endemic diseases and virtually no medical care. The country’s mineral resources have been sold to the Chinese by the ruling elite, who also want to be the sole distributors of international aid. They don’t like NGOs. And aid is often distributed only at election time. This sort of fragile state is so easily pushed into famine by war, as has been happening in Somalia, Yemen and South Sudan.

Earlier this week I learned of the untimely death of friend, who I was close to when I lived in Glasgow, but who I lost touch with after I moved here. His partner, expecting him to be at home, had rung him but got no reply. After several attempts she went round to the flat and found him lying on the floor, as if asleep. He had died from a heart attack.

Having to live with a series of small irritations is the stuff of normal life. It means you are alive and kicking. Making the best of your situation, with humour and resilience is what matters. I’m trying to get better at it. I hope that as I progress along this road, bigger problems might become a little smaller.

Monday, 13 March 2017

The Sleep of the Lambs

It has been another tough week. My dearest T has needed to see two different specialists: an Endocrinologist and a Respiratory specialist. The good news is that she got a diagnosis and began a course of treatment; the less good news is that she will probably need this treatment for life.

Around a year ago I was at a clinic waiting for an asthma review when I saw a poster on the wall: ‘Does Someone you Love Snore?’ The poster explained that bad snoring can be a symptom of a dangerous respiratory disease called sleep apnoea, and said that there was a simple test for this. I went home and spoke to T about it.

She snores very loudly. I often found it difficult to sleep in the same room as her, even wearing earplugs. Not only was her snoring loud, it was disturbing in other ways because she sometimes sounded like she was choking. We looked up sleep apnoea; it was dangerous because your airway would become blocked whilst sleeping. Usually your nervous system would kick start your body and wake you from deep sleep to reopen the airway. But when you subsided into deep sleep, the airway would often block again and you would need another kick start. Over time this process would put a lot of strain on your heart and could lead to high blood pressure, a stroke or a heart attack. 

I asked T to go for the test. At first she was reluctant but I persisted. Then she began to suffer other symptoms: extreme tiredness, bad headaches, shaking, occasional blurred vision, pins and needles. She went to her GP who gave her some blood tests. The results showed that her hormone levels were abnormal. After some discussion he referred her to see the two specialists. Then, through an acquaintance of T’s, we learnt that sleep apnoea with disturbed hormone levels can be a symptom of a problem with the pituitary gland. Her husband had a tumour on his pituitary gland which had caused the sleep apnoea. We began to worry a good bit more.

The sleep apnoea test is quite odd. T was fitted with a heart (mini ECG) monitor and finger (blood/oxygen) monitor. A small microphone was also taped to her forehead. She wore this for one night, and returned the kit to the hospital the next morning. Then we waited. Strangely enough both of the appointments came in the same week.

The Endocrinologist was first. He spent the best part of an hour talking through T’s symptoms. His view was that the core problem was sleep apnoea because the majority of her symptoms were intermittent. He felt that if there was a problem with the pituitary gland these symptoms would be continuous. But to double-check he sent her for a suite of blood tests.

The Respiratory specialist told her that she had mild to moderate sleep apnoea. The test showed that she had woken up 15 times an hour for ten seconds or more. She was shocked, that meant she was waking up from deep sleep over 100 times a night. But this had been happening automatically, she was hardly ever aware of it. When your sleep is this disturbed it disrupts your body’s maintenance systems and can cause a whole host of distressing symptoms. No wonder she was feeling so tired and debilitated.

The treatment is a small breathing machine which keeps her airway open at night. The machine pumps in air to her nose and mouth through a close fitting mask. It makes her look like a cross between a Second World War pilot and Hannibal Lecter. We both laugh at it. But, given the dangers, it is a small inconvenience. The first night with the mask on her snoring stopped and, despite suffering from a bad cold, T began to feel a little better the next morning.

Sunday, 5 March 2017

Pickle and Caravaggio

After all of the stress of recent weeks we had a weekend away in Dublin. The weather wasn’t good but it didn’t seem to matter. We wandered the streets in the cold and damp, managing to escape the rainstorms. There were two main highlights: a new Indian restaurant in Camden Street called Pickle and the ‘Beyond Caravaggio’ exhibition at the National Gallery. Both of these experiences were filled with drama and intensity.

I’d lived in Birmingham and Manchester for many years and was used to eating good quality Indian food. These areas had substantial communities from the Indian sub-continent and this meant that they offered a range of authentic eating places. Many were small Indian cafes whose windows were stacked with brightly coloured sweets. There was normally only one curry on the menu. Indeed there was rarely a menu, just the dish of the day, usually a vegetable curry dominated by whatever produce was going cheap in the market at the time. In these cafes, set in the grimy streets of the inner city, the majority of the customers would be from the Indian sub-continent. In more affluent suburbs and in the city centre there would be more upmarket restaurants which would cater for the British customer, but amongst these there would always be some that produced good quality and authentic Indian food.

Coming to live and work in Belfast I was very disappointed to find that there was a very small community from the Indian sub-continent here and consequently very little choice in the Indian restaurants. The only one that I found which produced good quality food was the oddly named Lolita in Stranmillis, which unfortunately closed a few years ago. Sadly I’d not found a good Indian restaurant in Dublin either. But I’d heard that a new one called Pickle was good and was keen to try it. We were not disappointed.

We had the early evening menu, two courses for €22. I had Seek Kebab and Chicken Tikka, two items you would find on most menus. But the aromas and tastes of these dishes were extraordinary. The chef is from northern India. He grinds and mixes his own spices and it shows. As I drank in the flavours, I was back in Saleem’s in Balsall Heath where as a student I had first tasted those intensely rich and heady spices. I was almost expecting to find the dodgy jukebox in the corner filled with Bollywood anthems. But Pickle is squarely aimed at an upmarket customer and is more discreet in its style. On the a la carte menu, which we will be going back for, most of the main courses are over €20. As we left we noticed a plaque in the foyer which showed that Pickle had been chosen as the best Indian restaurant in Ireland.

Richness, drama and intensity also mark out the paintings of Caravaggio. The exhibition, on tour from the National Gallery in London, displays the huge impact that he had on other artists during his short life (1571-1610). There were only four Caravaggios on show. This confirms how highly valued and closely guarded his work continues to be. They included the iconic ‘Boy Bitten by a Lizard’ and the ‘Supper at Emmaus’. The remainder of the exhibition featured paintings by his contemporaries who were seeking to emulate and utilise his powerful new style. Some achieved this so successfully that for many years their paintings were actually thought to be by Caravaggio himself.

What I love about Caravaggio is the extremely skilful composition of each of his pieces. The paintings are intense and dramatic, the human figures are in close up and every gesture connects you to another part of the scene that is realised in an intensity of light and dark paint (called chiaroscuro). Apparently he worked using sketches of live models who posed each figure in the drama, which he then put together into the final rich and powerful composition. You look at the whole painting and then your gaze is slowly taken around and across it by the shape of the bodies, the gestures of the figures and the play of light and darkness.

My favourite piece by Caravaggio is a triptych in the church of San Luigi dei Franchesi in Rome. On three walls of a chapel are displayed episodes from the life of St Matthew. The left wall appears to be a scene in a tavern; it is in fact at a tax collectors. Men are sitting around a table, lit from a window to the right. There is a complex interplay of gestures and sightlines. A bearded man has entered the room and points towards a young man in a feathered hat, brightly lit at the centre of a canvas. Jesus has chosen the disciple to follow him.  On the right wall an assassin in loincloth with rippling muscles is about to thrust a sword into the supine saint, who lifts up his arms in protest. Smartly clothed men look on almost impassively, whilst a young boy turns away in terror. The sightlines, gestures and chiaroscuro of these two pieces on opposite walls interact extremely powerfully and dramatically. The centrepiece is the least interesting, depicting the saint with a halo and an angel above. Apparently it is the second version. The first was rejected because it was considered too radical. The saint and the angel were depicted intertwined around his writing of the gospel. This picture hung in a museum in Berlin but was destroyed during the Second World War.

This triptych, painted in 1600, was Caravaggio’s first major commission and made his name. After that he became patronised by a rich Cardinal and painted many of the great works on religious themes that he is now known for. Unfortunately, you cannot transport a chapel in Rome to an exhibition in Dublin.


The Crucifixion of St Peter 

Thursday, 23 February 2017

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.





Friday, 17 February 2017

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.

Friday, 3 February 2017

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.


Monday, 23 January 2017

Abuse

The news over the past week has been dominated by stories of abuse. Internationally, much space has been given to the tyrannical abuses of power of the new President of the USA. Locally, much space has been given to the corrupt abuses of power in the Renewable Heating Initiative, a scandal which precipitated the fall of the devolved government of NI. Both of these matters remain high on the news agenda and are sure to run and run. But only passing attention has been given to news of much greater abuse suffered by more vulnerable victims. On Friday, the Historical Institutional Abuse Inquiry reported that there had been widespread physical, emotional and sexual abuse in children’s homes in NI, taking place over decades. Today this story is nowhere to be seen on the news agenda. The rapid public forgetting of this inconvenient truth is a scandal in itself.

For three years the Historical Institutional Abuse Inquiry of NI took evidence from almost five hundred former residents of children’s homes in NI run by churches, charities, local authorities and the state. It investigated these homes over a period of seventy years. The survivors that came forward to tell the Inquiry their stories are to be applauded for their bravery. Not only had they suffered prolonged physical, emotional and sexual abuse from adults who were placed in positions of trust and responsibility for them, but when they plucked up the courage to tell other adults in authority of their suffering, they were not believed.

Those in authority either returned the children into the charge of the abuser that they had just complained about, condemning them to suffer further abuse; or moved the abuser to another position of trust and responsibility in another institution, enabling them to continue their abusing behaviour.  As has been seen in the findings of similar Inquiries in other places, the pattern of behaviour of the authorities in these matters continues to be one of denial and cover up.

Many of the survivors were frail and ill, testament to the extended suffering that they had received. Some were so unwell that they were unable to give evidence to the Inquiry in person. A number have died since the Inquiry began. The most complained about institutions were run by the Catholic Church, and in particular those run by the Sisters of Nazareth. Now that their misdeeds have been publicly exposed, the institutions involved have issued apologies. But surely this is far too little and much too late.

The Inquiry has recommended the payment of compensation to these abuse victims. But how do you compensate someone for a tortured childhood and a haunted adulthood? Survivors are not able to live their lives over again. They were forced to experience the unendurable, and found a way to live through it. Many victims did not survive to tell their stories. Can you put a price on survival?