Life After a Rare Brain Tumour and Supplementary Motor Area Syndrome

Awake Behind Closed Eyes

Alex Jelly, Adel Helmy, Barbara A. Wilson

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429668210
• Edition: 1
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

This book offers a personal insight into the experience of Alex Jelly, a professional fundraiser who developed a rare brain tumour, a papillary meningioma, which was successfully removed. She was left with Supplementary Motor Area Syndrome and associated problems including motor and speech impairments and a temporary psychosis. Discussing Alex's struggles and triumphs throughout her rehabilitation, this book offers an honest account of her journey from diagnosis to recovery.

Part I introduces Alex's early life and employment, symptom onset and diagnosis, treatment and rehabilitation. Part II presents her neurosurgeon, Adel Helmy, and a clinical neuropsychologist, Barbara A. Wilson. Adel provides a medical context by explaining Alex's successful surgery and her post-operative experience. Finally, Barbara concludes with a comprehensive view of Alex's recovery and gives a voice to the therapists and psychologists who worked with Alex throughout her in and outpatient rehabilitation journey.

This book provides support, understanding and hope for patients who have suffered a brain tumour, and their families. It is valuable reading for any professional involved in neurorehabilitation, studemts of clinical neuropsychology and those touched by brain injury.

Part I

Alex’s story

Chapter 1

Life before

Alex Jelly

I come from a loving, supportive family, the middle of three daughters all separated by about two years in age. As a child I went to the local school, then a convent a little further away, where I travelled by school bus each day, then by my own choice to a boarding school from 16 to 18. I was always happy at school, did well academically and was relatively popular – at least, I never had to make much effort to make friends. My father commented when I was a teenager that I didn’t seem to need people and maybe that’s why people gravitated towards me – like cats, who always seem to go to whoever doesn’t like cats!

I graduated in English Literature from York University in 1995 (it was the only subject I was really good at) and after training took a job as an English teacher in Malaysia for two years. I was originally recruited for a school in Beijing, but they faxed me a couple of weeks before I was due to leave (with warm clothes packed) and said they’d just opened a school in Borneo and needed me there for three months. I just needed to repack for a tropical climate and I was ready to go. I loved it there in Malaysia so much that I never did end up going to China.

On return to the UK, when I was ready for a new job, I knew I wanted to work in international development. After some years of international travel, including a month in Malawi when I was 17 (I know, I was lucky; most people’s school trips consist of a field trip to the local town!), I could already see the value in skill sharing and wanted to give something back. But the only way into international development was to spend time “in the field”, which I hadn’t done.

I looked around for a job that would suit an English Literature graduate with, by this time, three years’ experience of teaching English, and found a voluntary job as a fundraiser as a first step into the charity world. That was it; I was hooked. I worked in a pub part time to pay the rent for my tiny room in a London flat share and worked for three days a week at a drugs and alcohol charity in London. It turned out to be a stepping stone not to international development but to fundraising, as I then moved to environmental charities and to a couple of fundraising consultancies, working with a number of UK and international clients at any one time. I found fundraising so fulfilling that I couldn’t imagine doing anything else. As part of my work at one of the fundraising consultancies, I worked for The Skinners Company, one of the oldest livery companies in London, and for the RSA (Royal Society for the Encouragement of Arts, Manufactures and Sciences), running fundraising campaigns for £2 million and £20 million respectively. Life has always happened to me in the most delightful way. I’ve never been a planner. A boyfriend (and several friends) used to ask me how I could not have a plan and I would say “life happens”! To be honest I think I was more in love with the glamour of being a fundraiser and with raising money for things I cared about than with the work itself.

I then went travelling for a year in Central America, where I learned (bad) Spanish, and to India, where I learned about yoga in its wider sense – “it’s more than just Indian gymnastics”, as my London yoga teacher and friend, Kate Douglas, used to say – and had my first introduction to meditation, which for me was a very good experience. I dived in at the deep end with a five-day silent retreat called Z-Meditation, where practitioners stop the thoughts as they occur and then work out the untruth at the core of each, which appealed to my rational side. “I + X = happiness” was the core formula we were trying to disprove. So much of our unhappiness or discontent is based around this formula that most of us believe when we say to ourselves: “When I have this or the other, or do this or that, I’ll be happy.” We know this cannot be true. In fact, when we get the thing we’ve been craving, whether a new car, house, job or partner, we move on to the next thing or experience that is now supposed to guarantee our happiness.

In India I was very focused on the brain. I heard from several backpackers about a retreat called Vipassana, which was a 10-day silent retreat offered for free all around the world, but I thought this was just another ego-driven, prove-yourself-hard experience. I later did this retreat in Switzerland and the UK and it definitely isn’t ego-driven. For example, a longstanding knee problem was resolved in one particular meditation session on my first Vipassana retreat, confirmed by my chiropractor back in London whom I’d been seeing for some time and who said, “This is the first time we haven’t had to work on your knee.” Experiencing became believing and I gradually (mostly) balanced my belief system to include the body and mind in its widest sense.

I had “discovered” Reiki healing in much the same way in Australia several years before. I was in an outdoor market, on my own, when I saw a sign with a word I’d never heard before. I went up to the stallholder and asked what it was. He said his wife was the “Reiki Master”, which sounded quite pretentious to me, but that she was busy right now and could I wait? He would give me a free five minutes while I waited. I agreed, more out of curiosity than anything else, and sat down on the stool he offered. We were in plain view of everyone passing but I did as he asked and closed my eyes. He put his hands near my head and I felt this tremendous wave of heat travel across my skull and down into my neck. “But he isn’t even touching me!” I thought. How could this happen? I asked him and he just said it was “energy”. If he or anyone else had described it to me I wouldn’t at that time have believed them, but experiencing it directly for myself was quite a different matter and served to convince me.

When I decided I didn’t want to work for the fundraising consultancy any more I resigned with nothing to go on to. I became friendly with a woman named Polly Higgins, who at the time was setting up a campaign which was to become “Eradicating Ecocide”. I found this very exciting, having always cared deeply about the environment, and loved what she was doing. When I discovered Schumacher College near Totnes in Devon and was enticed by their MSc in Holistic Science, I was reluctant as I wanted to stay in London to help Polly, but I did go in the end and what a blessing that was. Not only was it one of the most enriching years of my life intellectually and soulfully, but it was also the place I met my partner, Mike, one of the mainstays of my support system throughout this whole process. In fact, he was an integral part of the Schumacher experience. Schumacher opened me up to the possibilities of life and helped me realise that if you follow a thread of passion, even if you can’t see where it’s going, it will be rewarding in a way that you can’t even imagine. My year group did a module called “Leading in the Midst of Complexity” and I and others decided it should really be called “Hearing the Call” as you cannot force things that don’t want to be forced; it’s more about developing your listening skills and responding accordingly.

That’s how I ended up training in natural building; I had an urge to get my hands and feet in the earth and I followed it. I joined websites facilitating the exchange of skills and work hours for training, accommodation and food (at the time popular websites were WWOOF – Willing Workers on Organic Farms – and Workaway). I worked for week or so at a time doing things like scribing round poles to square cladding, working with earth building and joining a team for a month in France to build a roundhouse. I then joined Straw Works’ School of Natural Building, where I met all sorts of interesting people and developed skills in natural materials such as straw, cob, wood and lime. I learned that I could actually do this, sort of, with the help and support of others! I had all sorts of dreams of building genuinely affordable as well as sustainable homes and looked for land for a while, but it was never to be. I think now that I was trying too hard to make it into a career, trying to impress other people and straying too far from the “rule” I had already discovered: that if you follow your heart there’s really no need to justify it with logical reasons.

Chapter 2

Symptoms and diagnosis

The Lime in the Coconut

Alex Jelly

Looking back I would say it was mid- to late-2016 that the symptoms started to appear, although at the time I didn’t put them together. I grew increasingly tired and started to lose weight but put it down to the eco-retrofit I was doing on our house at the time. Early mornings and late nights took the blame. By Christmas I was admitting to my family that I thought I was suffering from depression, something that really scared me as I’d never had it before. The only good thing about this was that I started building a team around me, something that was to stand me in good stead later on. I found a wonderful homeopath, who I still see, went to one meeting with a psychotherapist, which I’d never done before, and invested in some books about this mystery world of depression.

Every time I had a headache or vomited I would put it down to food poisoning, a “bug” or something else. I remember a few days after Christmas 2016, Mike and I were staying in Camber Sands in Sussex and walked into Rye for a massage – it was going to be a lovely treat, but I threw up in the reception area!

I’ve also recently realised that the pains in my head every time I ventured onto a trampoline with children (for several years before the diagnosis) were a symptom of the brain tumour. It felt like something weighty was being thrown around in the top of my head, but I just put it down to age and long periods between practice on the trampoline. It was not until I joined my nieces on their trampoline in May 2019 and it didn’t hurt that I made that connection!

One Monday morning in January 2017 I woke up and vomited into the bin beside our bed (which has holes in the bottom so it seeped slowly into the carpet). I said to Mike that I’d better stay in bed, but he didn’t think I was making much sense in my replies to him (and not caring about the carpet!) so he called the GP. When the GP spoke to me and found the same – a delay between questions and then confused-sounding answers – he advised going to the Accident and Emergency (A&E) department. I thought it a bit over the top, but what could I do? We were lucky to live in Cambridge, about a 15-minute drive from one of the best hospitals in the UK, Addenbrooke’s, with one of the best neuro units, so off we went, with Mike driving.

The funny thing is that my perception of the conversations with both my partner and the GP that morning was that I could easily have responded more quickly if someone with less patience had forced me to. I thought of my sister’s no-nonsense approach and thought, “She wouldn’t let me get away with it!” The phrase that was going through my head when Mike or the GP spoke to me was, “Narrow window of opportunity, Jel” (Jel’s the name my friends use for me and I sometimes call myself). I was quite bemused by the fact that no words were coming out, even though I knew what I wanted to say and was almost laughing at myself.

At A&E we were seen fairly quickly and some basic details were taken. I remember Mike doing most of the talking with me answering some of the more basic questions. I had started to feel better by then and remembered to cancel an appointment for that day. But they scanned me and came back with the news that I had a growth in my brain and they wanted to keep me in for further checks. I think I vomited in the waiting room – I can’t remember that far back. I remember one nurse (or was she a doctor?) breaking the news to me with tears in her eyes, which bemused me still further. I was a healthy and until quite recently happy, fit, 40-something-year-old. What could possibly go wrong? It was exciting to be in hospital with all that attention, but really, what could go wrong with my perfect life?

They kept us in for a couple of nights, with Mike sleeping on the floor of the side room. My younger sister, Debs, came to visit for the meeting on the second day where the surgeon was to explain what kind of growth it was and what their recommendations were for what to do about it. I think I expected an operation at the worst and probably not even that – “Oh, just keep an eye on it, come back for regular scans but nothing to worry about.” I couldn’t have been more wrong. Mr Helmy brought in a small crew of junior doctors attending, to break the news that I had a tumour about five to six centimetres across (“about the size of a lime”) that I had already been told was a bilateral parafalcine meningioma. I leapt on the word “parafalcine”, mistakenly believing it to mean “false”.

Debs took copious notes, while we were free to listen – an invaluable service and the first of many, and the conversation went something like this:

HELMY: “So you’ve got a large tumour growing in the middle of your head. I suggest operating fairly soon but it’s your choice.”

ME: “But you’re not worried about it, are you?”

HELMY: “Well, we are keen to take it out.”

ME: “But you said it was my choice. What happens if we don’t remove it?”

HELMY: “It would continue growing and pressing on the brain, your symptoms would get worse and worse and you’d probably be dead in two months.”

So not much choice then. Obviously I agreed to him taking it out, with great faith in his skills as a surgeon, which he wasn’t to let down. I asked whether it was a straightforward operation and he explained what he would do but said it was a large tumour and that a brain operation is always a risk. But it was more risky to leave it to grow. I wondered whether it could have been connected with my childhood febrile convulsions, which at one stage had put me in a coma for two days. He said the technology wasn’t available in the 1970s to determine whether there was already a tumour, but that it could have been there for 10 years or more. I actually felt glad about the technology not being good enough to identify a tumour in my childhood. Life would have been very different for me knowing that I had a tumour or even a possibility of one – always looking over my shoulder, always being looked out for. I could just imagine the restrictions.

Meanwhile my partner, my beloved Mike, along with Debs, was already doing a sterling job of keeping the family updated as he was to do with an increasingly large circle of friends over the next year (thank you WhatsApp and Teamup apps).

Mr Helmy told me it was almost certainly benign and that I’d be in hospital perhaps for five days or more depending on my recovery. It shocked m...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Preface
• Acknowledgements
• Foreword
• PART I: Alex’s story
• PART II: Background information from Adel Helmy and Barbara A. Wilson
• References
• Index