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Marie's Story

The Shock

The story began with my own post-operative check at the Royal Glamorgan Hospital. I was walking home from my morning appointment (it was early afternoon by now as there had been a delay in outpatients). I was deep into enjoying my walk when I noticed John’s car draw up alongside me. I found this unusual.  I was aware he had an appointment with orthopaedic outpatients at RGH that afternoon. At first I was mildly amused at the irony of his having been able to go to outpatients, have his appointment, and still catch up with me on my way home from my morning appointment. I had been less than impressed with my experiences as an inpatient at the hands of RGH, and was trying to see the funny side of the continued poor service. Feeling victimised had been tiring and I wanted to move on. My smile soon faded when I saw John’s face. He didn’t speak, he just pointed to the back of the car where a pair of crutches lay across the seat. I got into the car beside him. His face looked startled. He appeared to be in some kind of panic. I know not to speak to him when he looks like this. He has ‘knee-jerk’ reactions, and it is very difficult to communicate with him on such occasions. I sat in silence for the remaining short journey to our home, and pondered the possible cause of the startled stare. There had been some tests in relation to knee pain, and he had received a phone call the previous day asking him to meet with the orthopaedic consultant in the fracture clinic. At the time I had expressed my view that this appeared unusual. I was fearful about why he had been called in, but he had been flippant and dismissed my concerns. I began to imagine that my concerns had been justified. As we approached the house he said in short, sharp bursts:

‘I’ve got tumours, I’m not allowed to work, I’ve got to use the crutches or my leg might snap’.

I didn’t respond immediately. My professional training has taught me that immediate responses are rarely the most helpful. I switched into panic response mode inside, but I waited for that moment to pass so I could remain calm and controlled when communicating with the six foot two bundle of wild stress sitting next to me.

When we got into the house he explained how the orthopaedic team at RGH had been concerned about some unusual images on the MRI scan of his knee. Consequently his entire leg had been scanned and the results sent to the Royal Orthopaedic Hospital in Birmingham for interpretation by an orthopaedic oncologist. The ROH had confirmed the existence of tumours. He would be referred to the ROH where a biopsy would be taken to determine the nature of the tumours. I felt as though someone had scooped out my insides with a curette. I also realised I would need to assume control of the situation because John was clearly in a state of debilitating shock.

I informed bosses and colleagues at work, alerting them that I may need to take time off. Whilst at work I found it difficult to perform my job. When I was away from John I found my own feelings were fore-fronted, and I was in my own debilitating state of shock. Nevertheless I knew I had to remain in control to move things forward. In its lumbering way, the NHS was dealing with the situation in its own time. I was aware from my own experiences that time moves much more slowly in NHS bureaucracy than in the minds of people waiting for news about an illness. I was aware that communication within hospital could be ludicrously poor, so I imagined I would need to intervene to ensure that the more challenging task of communication between hospitals could take place. I was not wrong in my imaginings. Whilst John remained at home paralysed with fear, I managed to find time whilst at work to telephone first the RGH, who said that they had passed the matter to the ROH and it was now out of their hands. Unsurprisingly the ROH said they were awaiting paperwork from the RGH, and so it went on until eventually I spoke to someone who appeared to have some humanity. Having managed to locate a sympathetic administrator at the ROH, I decided it was time for John to have some input. I was distressed and on the point of tears yet having to put on a professional face at work, whilst also trying to be supportive and pro-active for John who was sitting at home. I phoned John, gave him the details of the administrator at the ROH and asked him to phone her. Thankfully he did, because this proved to be a turning point and he began to face up to what was happening.  I think that speaking to the ROH must have made it more real for him.

The Visit

Once details of the arrangements for the biopsy came through, I made all the practical arrangements for rail transport to Birmingham. John, to my surprise, dealt with the arrangements for booking me into relatives’ accommodation at the hospital. I had spent a great deal of time on the ROH website and had developed in my mind an idea of what to expect. I found the website informative, communicating a caring culture for those affected by orthopaedic cancer, whilst at the same time emphasising the brilliance and prestige of the skills and research profiles of the medics. There were lots of photographs of bald children on the Homepage, and I guessed this was possibly about fund-raising. I had the impression of a rather slick, state of the art hospital. What we actually found was a hospital site in transition. We took a taxi to the hospital and were surprised to be confronted by a rather small, Victorian building surrounded by Portakabins. We wandered around until we managed to find a more modern ‘front of house’ area with an unstaffed reception desk. In front of the unstaffed reception were some incongruously placed canteen tables and chairs. Eventually I managed to accost a member of staff on her way into an office, and she kindly advised me that we would need to make our way to the ward. This small act of kindness was lifeblood to my depleted spirits. I felt such a sense of responsibility, marching forth searching for answers with my six foot two bundle of stress in tow.

Back in the older part of the building we found our way around a pretty quadrangle where once again I was struck by a sense of incongruity,  this time caused by the modern appearance of a ward entrance in the corner of this historic-looking quad. Eventually we managed to achieve ingress by means of the intercom system. We entered a modern-looking corridor. Ahead of us and to the right stretched more modernity. We were steered to the left by a helpful nurse who had been attempting to leave the ward. Suddenly we were walking alongside long rows of beds occupied by men with bandaged legs. I felt as though we were being led by Florence Nightingale through columns of wounded soldiers. We arrived at a corner and suddenly a modern nursing station was in front of us. You are in there, said a smiling nurse pointing behind us. I opened the door and we walked in. The room was very small. A hospital shade of pale green ricocheted off the walls. The bed had been pulled away from the wall and appeared to be in the centre of the room. There was a small internal window covered by closed Venetian blinds. I turned around. John had walked back out again and was gesturing to me ‘I’m not staying in there’. I was startled but encouraged him back into the room. ‘It’s like a chapel of rest’ he whispered. His comments captured the resonance I had been feeling. His comments conveyed the terror he was feeling. 

Once again I kept my feelings in check as I boldly steered John through the process of communicating with the consultant and his registrar, both of whom were reassuring and, in my opinion, underplayed the potential gravity of the tumour situation. A pleasant young student nurse came in to complete some forms. John was quite happily led into a state of reassured optimism. The chapel of rest had metamorphosed into a haven of privacy, and I felt able to leave him alone while I searched the site for my overnight accommodation.  Back in the modern zone, behind the deserted ‘front of house’ area, a porters’ lodge was occupied by several middle-aged men in uniform who appeared mildly animated by my presence. I was invited into the room. I felt as though I was inappropriately standing in their space. I was given keys and directions. I walked back through the modern part of the building and outside along a covered walkway that led to another old building.

Once inside the old building it became clear that this was a former nurses’ home. Upstairs was a staff training area and on the ground floor a series of doors leading to the rooms. My room was very small with two beds squeezed into what I imagine was meant to be a single room The door would not open fully because there was a bed in the way, and the wash basin in the corner was difficult to access for the same reason. The communal toilet and shower were at the other end of the corridor near the entrance door. I looked into the communal lounge – it appeared empty and unused. I looked into the communal kitchen. There was a supply of bread, milk, tea and coffee. I felt like an imposter. I felt as though I shouldn’t be here, that the facilities were really for the desperate parents of the bald children I had seen on the hospital website. When I returned to John he was happily installed in bed watching TV and seemed relaxed. It was approaching the time I had to leave because the evening meal was due. We had discovered by this time that the hospital restaurant and kitchens had been damaged in a fire, hence the incongruous canteen tables in the unstaffed reception area and the Portakabin at the front of the building which we now realised housed a temporary kitchen.

I left and walked out to the shopping area. I bought some food in a small branch of Tesco and bought some treats for John to eat that evening. The area was busy with cars and people because it was rush hour. They all had somewhere to hurry to. I felt displaced and lonely. I had bought cold food because I did not feel it was appropriate for me to use the kitchen. I bought a bit extra for my breakfast next morning and stored it in the bedside cabinet. I returned to the ward and found John sitting up in bed. He had enjoyed an evening meal and was looking forward to watching the football later. I spent some time with him but he seemed settled. I realised I had to walk back to the accommodation block in the dark so I left as soon as the football started and returned to the silent room. I felt glad that John was settled and relaxed. He had his place, he was meant to be there. I walked back through the modern part of the building which was now deserted, and out to the dark, empty walkway. I noticed to my right that there was a modern block of some considerable size stretching away from me in a part of the hospital I had not yet seen. Low, warm lights were glowing against the dark night. That must be where the bald children were.

The corridor in the accommodation block was eerily quiet. Trips to the communal toilet were quite scary. I sensed the presence of others but saw no-one. I wondered whether there were facilities for parents in the large modern block. Maybe this accommodation was just for the odd relatives who arrived with adults and had nowhere else to stay. At the back of my mind was the impending biopsy and what the results might be. At 8.30 next morning I returned to the ward where John was happily sitting in bed. He had spoken with the surgeon who had explained the procedure and he was shortly to be prepped for theatre.  Again I had to leave so I wandered around the hospital buildings and grounds until the rush hour traffic had subsided. The location of most facilities and offices seemed oddly placed. I followed a sign for toilets and found a lovely old Victorian building with wood panelling and portraits on the walls. This was clearly the Chief Executive’s area, and I felt I shouldn’t be there. I found the toilets and then left the building as quickly as possible to avoid what I perceived would be an inevitable confrontation if I was found there. In order to leave I had to pass a kitchen area where catering staff were working. Staff were milling in and out and I expected to be challenged about my presence there, but they simply went about their business as though I was invisible. That is how I felt in the fore-front of my mind. Displaced, unsettled and invisible. In the back of my mind the tumours and the biopsy were letting me know they hadn’t gone away.