Long live the fighters

It was late Thursday evening when we arrived at Hull Royal Infirmary. Fred gave me a list of items to return with the next day:

Charger

Laptop

Headphones

Book (from next to bed)

Clippers

Pillow

Toothbrush

Ward 40 was to be his home for an in-determent period while we awaited the plan. 

‘Welcome to Neurosurgery High Observation Bay’, said the sign on the open door. The ward is large and square, with windows to one side and two private rooms to another. In the centre is a u-shape desk – the nurses’ station, except the nurses seem to be constantly moving, so the physios, ward clerk and other health care staff make it their base. On top of the desk sit cakes and cards of thanks from relatives of previous patients. By the window is a big grey shelving unit filled with frequently used medical items – skin cleansing foam, absorbent pads, baby wipes, dry cloths, bed socks, blue face masks, and other less familiar stock. On the other side are a sink, lockable cupboards, offensive waste bins and a covered shelving unit which houses bedding, blankets, gowns, and pyjamas. 

There are eight beds in the ward, each with a corresponding number written on a wipeable board along with a space for the patient’s name, preferred name, consultant’s name, and magnetic cards to turn over to reveal any special instructions like if the patient is to have dinner, or not.  There are tubes and wires and noises from different areas of the room, beeping, sometimes shrilling sounds.

Fred had been given bed two, with two patients on either side of him and four opposite. The curtains around each bed were open to allow the nurses to keep an eye on each patient, only closed in an emergency or when the doctor came to speak to the patient and/or their family, providing visual but not audio privacy, as I later found out when I overheard a doctor tell a gentleman in the next bed that he is now on “ward care only” as he went on to explain the DNR form. I sat silently on the other side of the curtain without wanting to listen or witness this – such a consequential moment in this man’s life. I felt distressed by it; the dialogue still echoes in my ears, and I think of him.

The next day – Friday – we saw the consultant and his colleague. My heart was pounding, and my eyes were unblinking with both hope and fear. I did my best to remain light and in control of myself. He explained what he had seen in the scan, what he believed it to be, and what this meant.

“The tumour looks to be resectable. The operation takes some planning, so we’ll go ahead on Monday or Tuesday. You’re getting headaches because the tumour is blocking the fluid to the brain. We need to reduce the pressure on your brain, so we will do an operation later today to drain some fluid.”

Fred, we discovered, was at immediate risk due to the increased intracranial pressure on his brain, the first operation was to put an EVT – external ventricular drain through the front right side of his head to release some of the cerebral fluid.

I couldn’t digest all the information initially; it was a collection of noises, and some incredibly distressing words, so it is after the meeting that I began to process what we were told. The first thing I pick up on is the shift to using the word ‘tumour’ not lesion. Then my attention is drawn to ‘resectable’ – what does that mean? I think. Desperately. Does that mean they think they can get it all? I knew Fred didn’t want to know many details, he’d told me this, so in the meeting, I juggled gathering enough information without asking too many questions.

“My colleague will do the EVT later today. He knows what he’s doing, we do this all the time. Get some rest over the weekend and then we’ll go ahead next week.”

“We need to do this”, he said.

I noticed the consultant’s interaction with Fred, reassuring, friendly but professional, showing an interest in Fred as an individual, and saying just enough to instil confidence – he had a positive manner about him and put him at ease. I suspected he was approximately my age or a few years above, calm, self-assured, unperturbed, and observably respected by his colleagues, his accent suggested European although unsure which country – I felt confident in him.

As the ambulance driver said ,“They know what they’re doing”, and I put my trust, and my big little boy, in them.

Back in York hospital, when we were sent to a side room, alone, after we’d just been told what the CT scan showed, “I want dad”, Fred, frightened, expressed his longing for his father to be with us, with a raw and heartbreakingly honest tone. He knew he couldn’t have him, and I wished I could help, too. We both longed for his presence to support us, reassure us, and make us feel safe. The way he always did. Tears streamed down our faces as I hugged Fred, acknowledging his pain and my inability to fix the situation. 

Fred was now in a hospital bed, in Hull, wearing a hospital gown, surgical stockings and a plastic bracelet with his name, the date and his NHS number. There was a bandage wrapped around his hand where he had a cannula put in, in readiness for operating – he does not like needles. Nurses came at intervals to attend to him to check his vitals – blood pressure, pulse, oxygen, temperature and administer pain relief. Fred was wearing sunglasses to shelter his eyes from the painful glow of the industrial light above his bed. I rolled up towels and brought pillows from home to support his head and help him feel more comfortable as the pain was so bad.

It was around teatime on Friday night when they came to take Fred to the theatre, the time most people are on their way home from work and looking forward to their weekend.

Logan and I sat in the waiting area on the ward, a small square annexe along the corridor, with four chairs, two opposite each other, some equipment in the corner and posters and leaflets hung on the wall.

One poster caught my eye, from PAUL, a charity for brain recovery, which read:

‘Your brain works well with…communication, exercise, socialising, laughter, routine, mindfulness, eating well & stay hydrated, purpose, sunlight & nature, music, sleep, meditation, brain training, love.’

I considered how we could help Fred with each.

In the racks, lots of leaflets from guidance on community support after brain injury, and motorcycling safely, to signposting where to go for treatment or financial and legal help. I noticed they were each a bit lost in a sea of information. It was all a bit overwhelming, but so was the situation we were in.

The EVT surgeon – a younger (than me) doctor, came to see me after the surgery was finished and Fred was in the recovery ward.

“You need to save my boy.”

“His dad died, you see,” I added, in tearful temporarily relieved desperation, words fuelled by the events of our past, the relief at the immediate present and fear from the future.

By 9 pm, Fred had returned to the ward, and we could see him. I was able to breathe again, relieved by his return, happy to see my beautiful boy. 

As I saw my son with half of his thick dark hair shaved off and from his head a tube leading to a bag hanging on a stand at the side of his bed, my heart felt heavy. It was a flashing beacon to the new reality we faced. But we’d made it through step one.