Long live the fighters

A few days after surgery to resect the tumour, Fred had a post-op MRI scan. He was anxious about it and wanted me in the room with him. He was coping so well with all of this but was understandably distressed about the MRI. I found it so hard to see him this way – and going through (all) this.

I tried to calm him, though inside I was screaming too. They laid him on the uncomfortable bed and put a mask over his head, checked his position and then everyone left the room, locking the industrial door behind them, leaving just me and him and MRI scanner. 

Although I was trying not to look – in case I saw too much, an image, an expression – I could just make out in the corner of my eye the radiographer and nurses through the window, as they carried out the scans. I wondered whether they could see anything; did they know something we did not. They would talk to Fred now and again, through a microphone, to tell him what they were doing.

Meanwhile Fred and I were in what felt like our own world having our own experience, jointly and individually.

It was lonely in there, just the two of us in the dark room, me trying to comfort him but feeling like I needed comfort too, and the sound of this gargantuan piece of technology that’s able to look inside the body – to reveal things we may not know. He was in the machine and I was stood at his feet, waiting for it to be over. I watched my helpless son go through this distressing but entirely necessary process. I wanted him to feel ok – to be ok.

When he was a little boy, we had to go to the hospital for an eye exam where he was given drops in his eyes – they stung and he hated it, “Don’t let them hurt me, mummy” he cried out as he clung onto me. But I had to let them then, as I do now. Help is disguised as hurt sometimes. Even if it goes against a mother’s instinct to save her son from harm.

Fred was starting to shake his leg. Since arriving in hospital, he’d been given morphine and other medication that increased his anxiety. Coupled with the events of the last week and in pain and discomfort, he wasn’t himself.  

I tried to comfort him by touching his feet, the only part of him I could access, as his head and body were encased in the machine. I learned reflexology several years ago and tried to apply these skills. “Keep rubbing” he’d say, frantically, his anxiety increasing, wanting reassurance I was there. The scans seemed to take so long; every minute felt like an hour, as I let Fred know I was there with him. “You’re doing great” I’d say. But he was getting more and more distressed, in pain, as time went on and stuck rigidly in the machine. “It’s ok – I am right here”, I said, repeatedly, searching for words of comfort, not able to do much more.

“How long left?” he asked.

We were in the room for about two hours, and when they finally came in to release us after all the scans were complete, I emptied the breath I had been holding onto so tightly and silent tears of relief fell down my cheeks. 

It was early days, but the signs of Fred’s recovery from surgery were encouraging. His remarkable strength shining through. There were no obvious major negative effects from the surgery itself, aside from a pain in his knee. He still had a drain in his head so had a bag and stand attached to him.

We were expecting to see the consultant with the MRI results and for a more formal update on how the surgery went, and what they found, and my anxiety was bubbling away like a pan of hot soup with the lid precariously in place.

So, I was back pacing the streets of Hull to channel my worry when I was not by Fred’s bedside. I spent day and night at the hospital, but Fred had a visit from a friend, and Paul had come to support me, so I took the opportunity to get some air and cool the soup. I was unfamiliar with the city centre, having spent no time in Hull before this. We were trying to find somewhere to get something to eat and stumbled down a quiet street close to the marina. As we strolled along my attention was brought to something on the wall, I took a closer look and what I saw, for a second, stopped time. One of the now familiar moments where time past and time present meet and I stand grounded, unaware of the movements of the world around me, frozen still.

Stencilled on the brick wall in coloured writing read: “There is a light that never goes out’, the Smiths lyrics enshrined on Michael’s grave, and played at his funeral. It felt like the wall was talking to me, sending me a message. A message of hope, a message of support. Was he here? With us in this.

I so wanted him to be. I needed him, Fred needed him, and it was only me and him, as the parents of our beautiful boy who shared the unique role of mum and dad. The ones who would fight the hardest for our boy. After eight years of raising our sons without his presence, I knew I had to do this alone, but I felt I needed him now more than ever.

As my awareness of my surroundings gradually returned, I noticed a second image, ‘We are soldiers of the light’. It resonated; since Michael’s death I had seen the boys and me as soldiers of Michael’s light (that never goes out), and our own, striving to thrive in our loss and, right now, survive.

I was anxious about the MRI results, even though the call after surgery was positive, I’d picked up on a few candid comments in the ward. “Oh yeah, they weren’t sure how much they got were they”, said one nurse. I’d also noticed nurses referring to the tumour of the cerebellum in the present tense when referring to Fred. “You’ll need to get used to headaches” was another comment that raised my internal alarm bells.

I was confused and anguished over the words and their meaning. As I was by the booklet about brain tumours that had been left on Fred’s bedside.  

“They got everything they could see,” she said in that first phone call when they’d finished surgery, then why are they talking like it’s still there, I agonised. Terrified by words seemingly flippantly spoken. Had I not heard?

The consultant came to Fred’s bedside and promptly explained what he knew. “Sorry to be so blunt, I know this is hard” and he delivered more detail. Despite the bluntness, he appeared reassuring about Fred’s position. The surgery had gone as well as could be expected. He thinks he got 95% out, can’t say all, there is still something showing up on the scan, which could be residual tumour, or could be inflamed – but otherwise normal – brain tissue. Early reports show that the brain tumour was a rare type of cancer, Medulloblastoma, common in children but extremely rare in adults. Fred is 21.  The consultant said he could’ve had it a long time, possibly even from birth, but they would know more after the full histology report. He then talked about percentages.

“When in children 70% are still alive after 5 years, adults it’s better.”

Fred would be referred to oncology and would probably have radiotherapy. There was good news about the immediate future: he would be kept under observation for a few days and then they’d look to take the drain out and get him home.

Later that night, when words began to digest and catapult around my mind, I lay on my bed unable to move. “I can’t do this again.” I wailed with guttural desperation, feeling a mother’s love, and fear, for her son, and memories of his dad and his illness. “This can’t be happening”. But we were already doing this again; and our journey had just begun.

I can do this. We can do this.