Writing My Story

By Jeremy Stratton

Brain Wave, June 2022

Jeremy Stratton shares his journey of being diagnosed with a brain tumour and it how led to him starting the Brain Tumour Support NZ creative writing group

Seven years ago I had 90% of a tumour removed from my brain. The operation was performed under an awake craniotomy in the UK. It was the most frightening thing I have ever experienced.

Whether I would come around from the operation was not known. I had to accept my own mortality was closer than ever, and still be grateful for my life. And I was, and I am now even more grateful. I’m still alive and I enjoy that very much.

One of the most interesting parts of this situation was the difference between me (an emotional, afraid patient newly diagnosed with a brain tumour) and the very successful surgeon (precise, progressive and decisive).

I asked him: “Where do you think my tumour came from?” 

He replied: “Well I don’t care, you have the tumour and it’s my job to remove it. We are only discussing my surgery options.” 

No-one wants to answer that question. “Okay,” I thought, “this is new!” 

I am also fortunate to be married to a woman of rare standards and morality, a person who was 100% for me, for my best, someone who is a much more giving person than I have ever been. Though we’d been together many years, we got married just two weeks before my operation. A brave and commendable move by her!

I didn’t know before but when your life is hanging in the balance, when you’re facing up to the very scary reality of life or death, to have someone like that was a tremendous relief. And for that I am so grateful for Sara.

So when she gives me advice, I will (even in my relative selfishness) try to listen and follow. As a result, Sara got me to do a writing course for others with brain tumours. There were two clear reasons for doing this.

Firstly, writing has been my soul’s expression all my life, so after the brain surgery and some time healing, it helped me express myself in a way I couldn’t through talking.  This also helped Sara understand what was going on inside me.  We both thought that writing could be a really useful thing for others, and their families, who are finding it hard to express the tumultuous journey after being told: “You have a brain tumour.” 

Secondly, as I have been doing so well, gratitude led me to thinking about what can we do to help others in the same space - those with a brain tumour and their whānau, family and carers. This led me to finding the Brain Tumour Support NZ charity.

Sara then had another thought. At the time of my brain diagnosis and surgery back in 2014 and 2015, a book by a neurosurgeon came out. She thought: “That’s all good for them but what about a book from survivors?” 

So the writing course began, meeting every two weeks over Zoom, and so far it has been less course and more fellowship.

Initially I was worried about running the course because I kept thinking: “What on earth does it matter about writing when people are suffering so much? Who the hell am I to advise anyway?”

But I’m not advising as much as sharing. My fear in running this course was that I was a “sham” - a relatively better survivor, making life happen. So I expressed that fear to the course participants and they all said: “Jeremy we love this, you stay” because it became instantly obvious that people needed to share what was happening to them, their fears, experiences - and there’s humour too.

Sara is often on the Zoom call too, sharing what it’s been like as a carer. She is a great, open sharer of emotions and care. They love that too. I do tend to be a bit backward with an outward expression of emotions...put it in writing I always think!

I found out some things very quickly which, even now, make my blood run cold. Some of the stories that came from the course had a chilling effect. One person had their MRI scan reversed over so that the surgeon operated on the wrong side of her brain. It caused massive harm and nobody was prepared to admit to wrongdoing. Another fantastic professional had to give up the job he loved and was given just months to live.

More stories emerged from the course including a patient who was struggling to find out how she really felt about herself and her identity, there were family separation issues behind it all. Another carer had given up work to care for his partner full time and was paying privately for extra help. The list goes on.

The one thing that everyone wants is to write their own story and to explain who they are now. Because one thing is always true - we are all changed by a brain tumour and we want to know how and what that means. This we hope will become the basis of that book that Sara wished had been written as an answer to the neurosurgeon’s book. Given that it will be written by us, the survivors of their surgery, it will be a powerful read.

Another thing that has become apparent is the woeful lack of support in hospitals for people like us. I thought it was just Britain but no, the support here in Aotearoa NZ is also deplorable. We don’t know whether it is because it is the brain and there are so many variables involved (no-one wants to be specific) but there has been nothing particularly useful provided by the health agencies for people and their families. So another output of this course will be a pamphlet from us to others who have been diagnosed with a brain tumour, and their whānau, in the vein of: “So you’ve just been diagnosed with a brain tumour! Now what?!” It will not be medical or professional, it will be an extension of this group - people sharing their experiences, feelings, thoughts to others, in the hope that no-one else will feel so alone.

Perhaps the greatest thing I have learned from this course is that everyone who suffers with a brain tumour or injury, can become emotionally upset and confused. Sometimes very much so and of course what they’re faced with is an essentially un-emotional medical service. Now emotion and science is a poor mix but we have to accept that with brain tumours we’re not talking about a broken bone or a virus - we’re talking about central control, the ever present and expanding mind, the thing that processes everything in us.

Now that’s an emotional bit of medicine right there. So please medicine, give us someone to talk to about all of this. We need that.

In the course we do other writing stuff about how to devise and structure a story. We do little exercises about what a word might mean for them, just to get people writing.  And everyone shares their continuing stories. It all comes back pretty quick to how the brain works or does not.

Starting a course with people who are suffering with brain tumours, or their carers, is a bit of a risky affair of course. “Will I remember to turn up? Will anyone else turn up?” Hey the truth is, it does not matter. Someone always arrives, chatting away interestingly about their lives and their decisions and their conditions. Yes it is worth it and we will continue with it.

Feedback from the course participants shows just how much of a lifeline the course has become:

“I just want to immediately endorse how absolutely wonderful and rewarding I find membership of this group to be.”

“Without exaggeration I’ll likely give up my therapist sessions, which I’ve found leave me unfulfilled. These sessions, however, from the outset have me totally hooked and  are greatly uplifting. Thank you both very much for having the idea to initiate these sessions, and to persevere despite your fears, Jeremy.”

“Being part of the group has enabled me to voice my deepest, innermost feelings that were holding me back from progressing. I have felt supported emotionally and in a safe place to express concerns. I am learning how to express my feelings and challenges in writing which is also very therapeutic in itself. The biweekly meetings provide support and motivation to write my story.”

Lastly, I want to thank all of the people who come onto this course and share so bravely with us all. You  are all inspiring and courageous souls who give and are generous. Thank you.

To get started in writing feel free to contact Jeremy at jstrattonwriter@gmail.com