In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“Jess wasn’t given a prognosis but I knew from the internet that “long-term” GBM survival could mean just two years after diagnosis. I told myself that if everyone was predictable then they would be able to cure it. Jessica was young and healthy, she wasn’t going to be an average statistic.”
Here is Jessica’s story, as told by her sister Robby…
My little sister Jess had always wanted to be a teacher. She was brilliant with children: warm-hearted and creative with an informal, interactive style, first evident during her time as a youth leader when we were teenagers. Jess trained at Birmingham City University before joining the teaching staff at a primary school in Shenley, Hertfordshire.
At the beginning of January 2012, Jess had her whole life ahead of her. She had successfully completed her first year as a newly-qualified teacher and was really happy. Jess had lots of good friends and was part of a lovely, lively social group. Always so kind, Jess put everyone’s needs ahead of her own; she was incredibly empathetic and sensitive.
We were a close family. Growing up in Borehamwood, our childhood had been happy and we remained close. Jess was still living at home with our parents, so we saw a lot of each other and got on well. We are Jewish and Jess loved the idea of going out to teach in Israel. She had such plans for her life, wanting marriage and children, and was always healthy. When she became ill, her life got abruptly interrupted and was never the same again.
We just laughed off her first symptoms, none of us ever imagining what they might mean. Jess started forgetting the names of the children in her class and sending me texts that didn’t make sense. Her school was going through an OFSTED inspection so we assumed it was down to temporary stress around that. Jess didn’t appear to be worried at all, saying: “How weird was I?” and joking about it. She was getting a few headaches and had a heightened sense of smell. That was a strange one. I remember going to a restaurant for a family event and Jess being able to smell every ingredient on the table. The pesto, in particular, really bothered her.
These relatively mild symptoms went on for about five or six weeks, then Jess was in quite a bit of pain and was sick one night, later sleeping a lot. We discovered afterwards that her sickness was probably related to a bleed on her brain. At the time, her GP said it was likely to be sinusitis, and asked her to come back in a week if she wasn’t feeling better. At her follow-up appointment, the GP referred Jess to a private neurologist in Bushey.
She was signed off work – although she still went in! The doctor called her later, while she was at school, and had her immediately admitted to the Royal Free Hospital in Hampstead, London. Jess was quite annoyed, she felt she needed to be at school for the inspection, and none of us thought it was going to turn out to be serious.
They scanned her and identified a mass in her brain. Mum was with Jess when they got the results and it was completely shocking, although Jess was not at all hysterical, she seemed numb. It was a bad dream, like it couldn’t actually be happening to her. The doctors couldn’t tell us very much at that stage. They booked her in for surgery a few days later, saying that they would have a better idea of what she was dealing with, once they had got it out.
Jess had surgery in February 2012 and it seemed to go well. She was up and eating again pretty quickly. We weren’t given much information about brain tumours or Jess’s prognosis and that felt strangely comforting. Jess was simply taking one step at a time. While we waited for the results from the surgery, I became obsessed with knowing more about her condition. I started searching online and was taken aback when I saw the poor survival rates. I remember reading about a particularly aggressive form of brain tumour called glioblastoma multiforme (GBM), but assumed that Jess’s would be benign.
The first hint that something might be really wrong was when Jessica was given an appointment with an oncologist; we knew that meant cancer. I was the only member of the family who had done some research beforehand, so when I heard the words “glioblastoma multiforme” in that meeting, I cried in the doctor’s office. I couldn’t stop myself. Jess was understandably curious about what her diagnosis meant. She didn’t understand some of the medical terms the doctor used, so they had to spell everything out, explaining that her tumour was malignant which meant that it would get worse unless they intervened and tried to stop it.
After that meeting, it was like a switch had been turned off and Jess never asked about her tumour, treatment nor prognosis again. She had no interest in learning about her disease and didn’t seem able to retain information. I don’t think she even knew the name of her tumour. Mum took over as her primary carer, sorting out her medication and appointments, while Dad was in charge of updating family (like our brother Michael in Israel) and friends with Jess’s progress. I was there to support her and offer what reassurance I could give
- although the more research I did, the less good news there seemed to be. All the literature we saw talked about living with a brain tumour, rather than curing it.
Jess wasn’t given a prognosis but I knew from the internet that “long-term” GBM survival could mean just two years after diagnosis. I told myself that if everyone was predictable then they would be able to cure it. Jess was young and healthy, she wasn’t going to be an average statistic. Her treatment plan was six weeks of daily radiotherapy and six months of chemotherapy, alongside steroids, at University College Hospital. It was hard on her; the long journeys in and out of London were draining and just being fitted for the radiotherapy mask was traumatising. Yet, Jess trusted us and didn’t question anything. Those car journeys were tough on the rest of the family too. Cooped up in a Mini for two hours a day over six weeks, trying to negotiate London traffic and navigate, while we were all secretly terrified about what was happening to Jess… it wasn’t easy.
She went through such a great deal, suffering from an itchy rash from head to toe as one of the side-effects and feeling very puffy despite also losing a lot of weight. Jess both looked and felt different. She had beautiful long, curly dark hair, before having to cut it short after having part of her head shaved for surgery, and became extremely cautious and careful. Jess had never been at all vain, she had never wanted to be the centre of attention, but her confidence was really shaken. She wasn’t working or driving, she was reliant on the family, her life had massively contracted down to hospital visits. Everything she loved
By the time Jess’s treatment finished in November 2012, we had all become big hat fans! She preferred them to her wig and particularly liked silk turbans, although they still made her feel quite self-conscious. Her next scan was, thankfully, a good one and Jess was given the all clear. Her scan frequency was reduced to every six months, just to keep monitoring the situation, and she needed corrective surgery to address damage to one of her eyes caused by radiotherapy, but the future looked brighter.
Jess had lost a year of her life to fighting cancer. She was still only 24, just getting started on her beloved career. Next came two years where she worked really hard to get her life back on track. Jess went back into a school, as a teaching assistant at first while she built up her confidence and stamina again, and then as a nursery teacher. She even went on holiday to Las Vegas, which was a big deal for her.
During that period, every scan was nerve-racking, Jess was paranoid that the tumour would return. Then, in March 2015, came the news that we dreaded: her tumour had come back again. Jess had experienced a strange episode at school, she lost her vision and felt really dizzy. Understandably shaken and panicking, she called Mum straight away. I was studying in Israel by then, but rushed to the airport as soon as Dad called me from the hospital. Jess was a wreck. I think she already knew what the scan would later tell us.
We were back on the rollercoaster. At first, we were expecting more surgery, but her medical team
– the same people as before – told us that we were now looking at two different sites rather than one. We left the office not really understanding what the situation actually meant nor what was going to happen next, but thought it doesn’t really matter if we “get” it or not, the medical outcome is the same. Jess was offered either chemotherapy or a clinical trial on nivolumab immunotherapy. We didn’t know which to choose, knowing the immunotherapy would be a long shot. In the end it seemed like our only option, we had to try something.
Jess went on the immunotherapy in May 2015, but halfway through her treatment she had a bleed on the brain and needed an operation urgently. The surgeon told us that he had “got all he could see”, but we were under no illusions that that was the problem dealt with. Jess was now on chemotherapy. She was very low but never moaned about what she was having to endure. A calmness took her over, she was so passive and tired, showing little interest in her own treatment.
That year was action-packed. Jess went through five surgeries and several bleeds to the brain. Her life was a constant cycle of having bloods taken, scans and medications. Hospitals became her new “normal”. There was hardly time to think; her cancer treatment was a full-time job. She had barely any energy and didn’t want to do very much. My life, too, was upside down. I had not returned to my studies in Israel and instead got a part-time job locally, so I could be around for Jess and her appointments. It was very intense emotionally. I was so scared for my sister and felt guilty if I went out with friends, as Jess had been forced to give up so much of her normal social life.
I was very conscious that she wouldn’t be around forever, so time together was precious. Jess never talked about death, except a throwaway comment about her leaving me all of her clothes. Retail therapy had become her outlet during her illness and she was obsessed with online shopping. We literally knew the name of our ASOS courier. A delivery came almost every day and we were still receiving things she had ordered after we lost her.
Six weeks before she died, she had yet another surgery, but was not well enough to cope with another round of chemotherapy. When someone has cancer, everyone has an opinion. People were trying to help, mentioning an article they had read or someone they knew in a similar situation. We tried everything, after all you need to try something when the conventional medicines didn’t seem to be helping. Mum was particularly interested in food-related alternative therapies, cutting sugar from Jess’s diet and trying her on manuka honey and even special jams. I think it was Mum’s efforts that turned Jess into a “long-term” survivor.
We could see her getting worse during the early months of 2016. Her mobility was poor, leaving her uncoordinated and prone to falling over. In April, soon before she died, the doctors took Mum aside and told her that Jess had only weeks left. They warned her to expect Jess to sleep more and more as her body started shutting down. I can only imagine what it felt like to hear that about your child. We knew she probably wasn’t going to get better, but to see her decline day by day was still shocking and unreal. Palliative care started at home, yet even as she needed help to eat, Jess was still wanting to start physio and get walking properly again. We were all trying to be hopeful but it was getting more and more difficult. It sometimes felt like we were faking it.
One evening in May 2016, we were all together for our usual Friday night meal. I remember thinking it could be our last one. Jess wasn’t able to eat much, just soft food, and could not communicate beyond nodding or giving a thumbs up. The end came quickly after that night. Jess was only 27. It still feels surreal, like the worst hasn’t actually happened and she will walk through the door again.
Later, I found that I didn’t want all my memories of my sister to be about illness and cancer. I wanted to think about how she was before, to remember her that way, and to do something positive in her name. I had got into exercise while Jess was ill; it was my outlet for all the stress and worry, as well as giving my life a bit of a structure while so much was on hold. I teamed up with close friends and family to take on the Three Peaks Challenge in July 2017. We all like walking but had never tackled a challenge like this before – I would only do it for Brain Tumour Research. We have been training and planning, feeling both nervous and excited, conscious that Jess would be so amazed at how people have been inspired by her. She was a modest person and I know she would have been proud of us, as we were of her. Jess will always be our inspiration.
Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
If you have been inspired by Jessica’s story, you may like to make a donation via https://www.justgiving.com/fundraising/3peaksnickiwatermanjesshoffman or leave a gift in your will via https://www.braintumourresearch.org/legacy
Together we will find a cure.
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.