Mo was diagnosed with brain tumour in 2017. His mum is sharing an honest and thought provoking account of their experience of cancer to help raise awareness of the support provided by Cancer Fund for Children.
This is Mo’s story as told by his mum
On 26th October 2017, I walked along the school corridor towards the car park, leaving my class with the Vice Principal to take our son, Mo, to a hospital appointment. We couldn’t explain why he had been vomiting recently but blood tests from the GP suggested that it was nothing too serious. When the MRI was complete, one of the team approached me. She told me that I’d have to see a doctor who was waiting to speak to me in A&E. I could feel that my breathing was changing, my heart was racing, and my legs were weak. This was going to be bigger than we could imagine. We got to A&E, where Mo’s name had already been written beside a cubicle. The doctor arrived. He pulled across the curtain, did some random tests on Mo’s reflexes, while we stood in silence, and then said this.
“I’m afraid it’s not good news. Your son has a cancerous brain tumour.”
I put my hand out like someone directing traffic. I wanted him to stop talking. I gestured that my son was right there. I told him that Mo could hear him. I wanted him to take back those words and let me tell him. Let me tell Mo, with gentleness, and love, and comfort and hope. But he had said them. Mo had heard them. Paul had heard them. Mum had heard them. I had heard them. I couldn’t move. I stretched my arms out to Mo like a scene from an old black and white film, where someone is being torn away from someone they love. He walked towards me, his face confused and looking for answers. While all the time looking into my eyes, he sat on my knee, stroking my face, saying, “It’s OK mum. Everything’s OK”. I used his words from then.
“We have to admit him straight away”
“A brain surgeon is on his way to explain what will happen next”
I can’t remember anything else that he said but every response was “OK”. It took 16 months before I would stand on that school corridor again.
And what had happened in between, felt like another lifetime. Brain surgery, radiotherapy, chemotherapy. Everything should have been a loss. Our funny, big-hearted, handsome, football-loving, basketball-playing son should have been a shell of himself. Brain surgery left the left side of his face paralysed. An isolation room in the hospital left him unable to have friends or family visit. He lost his hair, his speech, his ability to walk. He was vomiting daily. His skin was burned. It should all have been a loss, and it was feeling that way for a while. Then things changed.
After radiotherapy there were six weeks preparing for four incredibly difficult rounds of chemo over four months. During those six weeks, I met up with a colleague whose son had had cancer. What a strange thing it was to talk to someone I knew, who knew what it felt like. She reached into her bag and took out a book. She handed it to me and said,
‘I hope you can get as much from this as I did.’
It was entitled “Things I Know For Sure” by Oprah Winfrey. I told her how moved I was by what she had given me, and how much I had long respected the words and beliefs of Oprah, and her ability to see the world and express her thoughts the way that she did. I had watched her TV programme when it was shown here years ago, and more recently, when my mum in law had died suddenly, I found myself trawling through old you tube clips of her shows to find comfort.
I read the opening section of the book that night, and knew it was going to be my ‘go to’ during Mo’s hospital stay. I put it away until the first day of chemo, in isolation, had arrived. I placed it on the windowsill beside my bed. Then I started to read. Slowly. I usually waited all day until Mo was safely tucked into bed and had fallen asleep beside me, then I’d reward myself for having managed to get through another day in one piece, with a chapter or page. It was like a bar of my favourite chocolate. I would take a nibble, and let it seep into my being, applying its wise words to every test the next day.
Gradually, the more I read, the more I started to see that everything that should have felt like a loss, didn’t need to be. I started realising that our whole family could be in a better place for having to go through this. And the time we spent going through it, could become more and more precious. It wasn’t to be feared. I needed to acknowledge it, accept it, and find a way to deal with it. I had already learnt from my son how to say “OK”, and that was a good start. I knew I would have to see the situation we were in, as the most special time. It was hopefully the one and only time that we would go through this, and we were going to start to make the very best of it.
Then I read the chapter that, to this day, is probably the best piece of advice I have ever read, and one that fundamentally changed the way I feel about life. I learnt that, in the worst times, going through the hardest moments, I just had to choose to find things to be thankful for. Oprah’s advice was to write a gratitude diary, where you find five things a day to be grateful for. Somewhere in the darkness of all our worst fears, I had to find light, and hope and strength. How was I going to do that?
There wasn’t anything I could do to change the situation we were in. That was going to happen no matter what. But I needed to try to find things I could feel grateful for while I was there. So I did. It was easy to be thankful for the wonderful staff who were looking after Mo. They were outstanding, and I don’t think we wilI ever be able to find the words that express how very much we appreciate what they did for Mo, and every moment that they dedicated to making him better in mind and body. It was easy to thank our wonderful family, schools and friends who were an amazing support to us and our daughter, emotionally being there for our every moment. It was easy to thank everyone who was doing the practical things that at that time, seemed so unmanageable, like bringing dinners, doing washing, and giving lifts. I’ve always felt blessed and grateful for these people.
But I knew I would have to find a way to be thankful for things that I couldn’t imagine being thankful for, if I was to overcome the frustration and anger I was feeling. I had enough of a grounding in Oprah to know that the frustration and anger I was feeling was at cancer, but I also knew that it these feelings would be triggered by the simplest of things, so that’s where I started looking. And I found it. The beep beep beep beeping that happened all day to tell us the drip was stuck, or empty, or needed replaced, had driven me crazy mad, made me anxious and feel like I was short-circuiting all day. But rather than focus on how much it was causing me problems, I started recognising what it was trying to do. I realised that the noise the machine made, told me when my son needed more of the thing that was making him better. And so I became thankful for the noise. I became thankful for the person who installed it, or designed the plug to make it work, or cleaned it, or put the buttons on it. I found every single possible way I could, to be thankful for it. And it helped me.
I looked at the stacked pile of disposable vomit bowls, that I had always perceived as a constant reminder of just how ill Mo was. I looked again, and with gratitude, I thought about how great it was that they were there, so that when Mo was suddenly, and often violently ill, he didn’t have to struggle to get out of bed to reach the bathroom.
I became thankful for the ‘tempa dots’ which had caused me so much anxiety. They always seemed to give us the bad news that Mo’s temperature was raised again. With gratitude, I realised I could be thankful that they were doing their job well. They told us when Mo’s body was letting us know that something wasn’t right.
I realised the same things were still happening, but I was able to see them differently. I hadn’t changed what I was seeing, I was changing how I chose to see it. The more I focussed on being grateful, the more I seemed to have reason to be grateful. Don’t get me wrong. Sometimes it was a real struggle. Sometimes I was so tired at the end of a day that I would curse that gratitude diary! The last thing in the world that I wanted to do when I could hardly see straight, and was drained from an emotionally exhausting day, was to spend an hour writing about how grateful I was for those feelings. But I did, and it turned those days where my focus would have been littered with fear and loss, to times where I could feel appreciation and hope.
It was about this time that a little more light shone on our lives.
I remember the first time that Helen from Cancer Fund for Children came into our lives. She smiled into the isolation room like a gift. She seemed full of enthusiasm, good humour and life. After she had introduced herself, she suggested to Mo that they watch a film together, one of his choice, and she didn’t even seemed phased by his choice of ‘Fast and Furious’! ‘That’s an angel,” I thought. She looked at me and I smiled back, thinking what a lovely person she must be, but inside I was aching. Under any other circumstances I would have been very grateful for this kindness, but as a mum of a kid in isolation, this was unbearable. I could only see problems. What if she had a cold or a tummy bug and didn’t know. What if the games she was going to play with him had been contaminated in some way.
I had to cling on with everything I had, to what I had learnt from “What I Know For Sure.” With this in mind, I gave a nod to Oprah on the windowsill, I breathed deeply and I trusted that gratitude would get me through this. I thanked Helen, knowing that I was choosing to look at it as a chance for Mo to connect, to get support, to spend sometime with someone who wasn’t hurting, and to have fun. So we left them. It was the first time we had been out of his company, and it wasn’t an easy thing to do.
When Paul and I returned to the room, we couldn’t believe it. Mo was just beaming. This little ray of light had brought him laughter, and goodies (how well she already knew him!). She played games with him and had fun with him. I could have burst with gratitude. After that, Mo started talking about cancer and his treatment in a way he hadn’t before. We started to realise the difference Helen was making. She was a new voice, a different way of seeing, explaining, and she knew. She did this. She chose it. She became a lifeline and we will be forever grateful for the day she started to make that difference in his life.
It’s been almost three years now since our son was diagnosed with cancer, and I have never felt more grateful for life. It hasn’t been an easy journey. We, and he in particular, have loved and lost good friends along the way. We are so sorry to have lost those friends, but grateful that we had a chance to have them in our lives, and see and feel their love in the world.
Thanks to everything he has been through, and the support of people such as Helen and Cancer Fund for Children, Mo is able to approach all aspects of life, even such great loss, with greater confidence than I had ever known him to have. They allow him to see things a different way. They listen. They hear him. They hold him and encourage him and are there for him. They helped him find his voice, and to have greater belief in the terrific wee person that he is. He is the person that he is today, without a doubt, because of the people who chose to be on his team.
He has made so many great leaps of faith, leaps which we didn’t know were in him, not least his decision to join Cancer Fund for Children’s Care Free Choir! (I would have put money on him remaining choirless for the rest of his life before his Cancer Fund for Children intervention!) The choir, who are a much loved group, have been just about the most wonderful bunch of people anyone could hope to meet, and the best source of inspiration, support, friendship, hearty laughs, zoom quizzes, and love.
I realise that they, Helen and Cancer Fund for Children, are HIS Oprah. This I know for sure, and I am so grateful.
For every moment that we went through to get us here, I am grateful. I am grateful that we have today. I have stopped thinking about the loss, and started seeing what we have found. Cancer happened. It will forever be the reason that we found so much in Mo, in ourselves, in others, and in each other. I’m not ready to thank it yet for getting us there, but I think I may be able to, someday.