In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Helen worked with us in December 2015 to share her story here. Sadly, she passed away on 18th June 2019. We will remember Helen as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
New mum, Helen Legh, a BBC radio presenter, feared her baby daughter Matilda wouldn’t survive. Now five, Matilda is thriving, but Helen faces the grim reality that she won’t see her daughter grow up and is making the most of whatever
time they have left together. She is also creating a treasure chest of precious mementoes for Matilda to cherish when she is gone.
“Even my worst fears hadn’t prepared me for this. I immediately thought of my Matilda, then just four years old, who had only recently started at school. How long was she going to have a Mummy? I was so sad to think how I was never going to see her grow up, or get married, how I was never going to be a Granny. And more to the point, how were she and her Daddy going to cope when I died?”
I have been a radio presenter for 20 years, working since 2007 for BBC Three Counties Radio (Bedfordshire, Buckinghamshire and Hertfordshire). Until a couple of years ago, I was getting up at 4am every day to present what was then a Milton Keynes edition of the Three Counties breakfast show, but more recently I have presented the Sunday breakfast show which is transmitted to the whole region.
I married Paul, who runs his own marketing business, in 2005, a couple of years after we first met. We both knew we wanted children, but tried unsuccessfully for four years, before resorting to IVF.
We were overjoyed when I finally became pregnant on my third cycle of IVF. Matilda was born 15 weeks premature in 2010 and Paul and I were told she probably wouldn’t survive and that even if she did she could be brain damaged. She was attached to so many tubes and monitors I couldn’t even hold her and she was two weeks old before we were able to have our first cuddle.
But true to her name – Matilda means warrior – she battled through with no lasting consequences from her ill-timed entry to the world. I felt so very lucky; Paul, and I had our precious daughter; we were a happy family, with a lovely home and a great life, even if I did have to get up at 4am to go to work!
Then in August 2014 our perfect world was about to come crashing down when I started having spasms in my hands, along with sensations of numbness in my leg. I went to see my GP who thought it was just cramp, but I wasn’t convinced.
Ever since I was diagnosed with a malignant melanoma back in 2000, I have suffered with anxiety about my health; I panic if anything seems wrong. As I was experiencing these “cramps” up to 10 times a day I decided to “google” my symptoms. Imagine my horror when it turned up some really scary conditions like Parkinson’s and Motor Neurone Disease. The idea that I might be facing the onset of something like MND led me to have full-blown panic attacks and high levels of anxiety and led me to lose around one stone in weight.
I went back to the GP and literally begged to be referred for an MRI scan. Grudgingly, and possibly only because I had BUPA cover, the doctor relented.
A week before my scan, I was driving to pick up Matilda from school when not only did my hand go numb, but also I found myself not being able to hold on to thoughts inside my head. Fearing that I might be having a stroke, I pulled over to the side of the road and called the emergency services, but found I couldn't speak. The lady at the other end of the phone was able to hear me making noises and, realising my inability to actually formulate words, she asked me to “press 1 for yes and 2 for no”. It was terrifying. Then quite suddenly, something clicked and I was able to speak again.
I underwent various tests which included having my eyes checked, but the neurologist’s verdict was that there was nothing of any significance to worry about. Nevertheless, I continued to experience a lot of anxiety as I still hadn’t been given a reasonable explanation for my strange symptoms.
I went for my MRI and alarmingly heard the neurologist referring to there being “a lesion” in my brain, although he refused to be drawn about what that actually meant.
I had to wait another week until I saw a neurosurgeon at the John Radcliffe Hospital in Oxford before learning that the lesion was a GBM4 brain tumour (an aggressive glioblastoma multiforme). This meant nothing to me as I had never heard of one, so I asked Mr Plaha if it was life-threatening. Not only did he tell me that in all likelihood it was, but he also made it plain that it was very aggressive and probably malignant. He said the average survival after diagnosis was 14-16 months.
Even my worst fears hadn’t prepared me for this. I immediately thought of my Matilda, then just four years old, who had only recently started at school. How long was she going to have a Mummy? I was so sad to think how I was never going to see her grow up, or get married, how I was never going to be a Granny. And more to the point, how were she and her Daddy going to cope when I died?
Within three weeks of my diagnosis, I was back at the John Radcliffe for ‘awake’ craniotomy surgery. I had to remain conscious because one of, what turned out to be, two tumours was in the part of the brain which controls my movement and the surgeon needed to keep checking he hadn't cut too far into my brain. The other tumour in my speech area was inoperable; ironic as speech is vital for my job.
The thought of being conscious throughout my surgery was quite petrifying, but in reality the whole experience was weird yet strangely relaxing – maybe partly because I was drugged to the eyeballs! I remember having conversations with the team of medics around me about Harry Potter and my life as a radio presenter. Seven hours of surgery, in which 85% of the tumour was removed, flew by.
Having recovered from surgery, I underwent radiotherapy every day for six weeks over the 2014 Christmas period and then had a six month course of chemotherapy (temozolamide) which finished in August of 2015.
I went back to work towards the end of October.
I am now 14 months on from diagnosis and stable, although waiting for the results of my latest scan. I don’t feel ill, but I often feel incredibly tired. Also I find I am not as quick-minded as before – I lose track of the conversation and my short-term memory is not like it used to be. Mobility-wise I am pretty good, but I do have weakness in my right leg.
To date I have had five seizures in which I have remained conscious, but unable to talk.
Matilda knows I have cancer, and isn't scared to talk about it. But what does that word mean to a 5 year old?
Today, Matilda is everything we hoped for and more. Though I wish she would get dressed when I ask her! And eat more vegetables! I am proud to say that she is already fantastic at reading, even though she is only five. Her favourite hobbies are dancing and drawing, she loves to play “mummies and babies” and won’t miss an edition of Strictly Come Dancing. Matilda says that if she has twins they will be called Roger and Jamelia – I don’t know where Roger comes from, but Jamelia is because of watching Strictly!
It is heart-breaking to think that it is more than likely that I won’t be around for all of Matilda’s formative years. All I can do is ensure I make the most of every day we can spend together. I am also creating a treasure chest of precious mementos for her to have when I am gone – diaries from my teenage years, special clothes, photos, videos and the like.
My husband Paul doesn’t like to talk about my condition but since my diagnosis he likes to spend as much time as he can with his little family. We often take Matilda to the park together and she rides there and back on her bike. Occasionally I buy us a cone of chips on the way home and feed some to Matilda as she cycles, although I know Paul thoroughly disapproves of this behaviour!
Since I discovered I had brain cancer, Paul has also instigated Fridays as being our date day. We like to go out for dinner or to the cinema. Sometimes when I have the strength we visit interesting places, seek out a new experience, or we might go to somewhere local, like St Albans, and have a wander around before going for tea and cake. Every three months when I have a medical appointment in London we use the excuse, subject to me feeling up to it, to go to a lovely restaurant.
My target right now is to stay alive for at least a couple more years. I am trying metabolic repurposing of drugs through my oncology care which involves taking statins, a type 2 diabetes drug and a worming drug. Alongside this drugs regime, I also spend time twice a week in a hyperbaric oxygen chamber in Milton Keynes which it is said can help provide relief from symptoms such as fatigue, mobility issues and speech problems. Added to which, I take 40 supplements a day, including cannabidiol oil (which is claimed to help fight cancer and also has been seen to be anticonvulsant in animals).
If I do stay alive, I won’t know which of my treatments will have actually worked, but I am not prepared to just accept what my consultant says. On top of this, my oncologist doesn’t really want to discuss alternative therapies and treatments, except as a last resort. I don’t want to wait until the last resort – I want to know I have tried everything while I am still relatively healthy.
To date I have only suffered side-effects from the conventional treatments I have received – chemotherapy and radiotherapy.
Before I found out that I had a GBM, I regarded myself as pretty healthy – I took exercise and did yoga, although I admit maybe I was a little bit over-weight. I have never smoked, I don’t drink and I have always eaten healthily, although
I do like sugar, but who doesn’t?
I knew nothing about brain tumours until I was affected or that there were so many types which grow in so many different parts of the brain. It is frightening how little is spent on research into this form of cancer. How can we move forward towards better treatments and ultimately a cure? And what’s more, we still don’t know what causes brain tumours.
I sometimes wonder whether mine was as a result of 15 years of getting up at 4am, or the stress I experienced whilst having three rounds of IVF before finally becoming pregnant with Matilda. Or was it because I was mucking around with hormones and my oestrogen levels were too high? Whatever the cause, however, I don’t think having cancer is unfair; I see it as being a case of some random cells multiplying for whatever reason. Cancer is very clever and I am not special.
I don’t consider myself as battling anything either. I admit I find it very frustrating when I feel too weak to do things, but I just have to accept my limitations. Maybe I am in denial? Regardless, I am just getting on with life the best way I can, while I can.
You can read Paul’s account of his wife Helen’s story here.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.