Michelle Rowe had grown used to nurses popping into her hospital room during lockdown, asking basic questions like what her name was and who the Prime Minister is.
After drifting off to sleep one day, however, she awoke to find she was simply unable to reply.
“They came in this time and asked for my name and I couldn’t spit it out for the life of me,” the 22-year-old tells The Mirror.
“I was trying to answer it for a minute until they were like, ‘OK, this isn’t working. They’re going to have to take you down to intensive care.'”
Terrifyingly, while fully conscious, Michelle had lost the ability to speak, while her limbs were nearly fully-paralysed.
Hospitalised for a second time with cancer, the young woman had been forced to turn to a rare new treatment to save her life – knowing full well that this was one of the disturbing possible side effects.
‘Was I going to be like this forever?’
“I remember being terrified, thinking what if this doesn’t stop?” says Michelle. “How much longer? Is it going to come back?
“You have these fleeting moments of absolute panic, thinking am I going to be like this forever?”
Michelle’s experience with neurological toxicity – when chemicals disrupt the normal activity of the nervous system – was the most traumatic moment of a long-running cancer battle that stretched over lockdown.
Heartbreakingly, she had to cope with the ordeal while isolated from her family and girlfriend, who were not allowed to visit due to Covid regulations.
For weeks afterwards, even as she regained control of her body, Michelle would have flashbacks and nightmares, and says the experience led to mental health issues such as anxiety and depression.
“I’d wake up in the middle of the night wrenched in sweat,” says the student. “I’d been crying in my sleep because it had felt like I’d been paralysed in a dream for hours. I couldn’t speak or ask for help and I was reliving that every night.
“It took a long time – even as the physical symptoms went down, the mental ones remained and I had to convince myself I was over the worst of it.”
‘You never think it’s going to be you’
Now in remission, Michelle, from Basildon, Essex, is speaking out in support of Teenage Cancer Trust’s new campaign #NotOk.
The charity is calling on the Government to provide greater psychological support for young people, who are often left to deal with the mental effects of cancer diagnoses alone.
A new report by the organisation has found that a third of young cancer patients who felt they needed psychological support have had no – or reduced access – to a psychologist over the previous six months, due to inadequate provision in parts of the UK.
Michelle knows first-hand the difference psychological support can make – having gone without it during her first cancer treatment before receiving help when she relapsed.
The then 20-year-old was first diagnosed in August 2019 after noticing lumps developing in her throat.
“It felt like it came out of the blue because I’d just been really oblivious to all of the symptoms,” she says.
“It got to a point where it was basically a cyst. My girlfriend came home one day and said it looks like you have an Adam’s apple.”
Taken to receive blood tests, biopsies and ultrasounds, Michelle was told she had Non-Hodgkin lymphoma, a cancer of the lymphatic system.
She admits that as a previously healthy young woman, she was at first “in denial” about the news.
“I never thought it was going to be cancer, you never think it’s going to be you,” she says.
“I’m the opposite of a hypochondriac, I thought there must be a logical explanation for this. Even when I got diagnosed, I was still in denial – I didn’t realise that I’d been properly diagnosed.”
Cancer’s return was ‘worst day of life’
Undergoing chemotherapy at a private hospital, Michelle experienced the treatment’s ‘usual’ side effects – suffering nausea, mouth ulcers and hair loss.
Six months later, she was given the all-clear and says doctors were delighted with her “excellent” response to treatment.
However, in January 2020 she noticed a lump had returned on her neck and realised something had gone wrong.
“It was definitely up there with one of the worst moments in my life,” she says.
“At that point it was genuinely terrifying because my treatment had gone so well – my doctors were like, ‘You’ve got an excellent chance of a cure.’
“It never crossed my mind that I would relapse so when it came back I thought, ‘Wow, there’s something seriously wrong with me. It’s got to be a lot more aggressive than I realised.’ And it was.”
Michelle was put back on chemotherapy, but the cancer had become more resistant and she didn’t respond to treatment like before.
Now being treated by the NHS, she was told her options were increasingly limited.
Doctors suggested she be put forward for CAR-T therapy, a highly complex and rare new form of immunotherapy which involves genetically modifying the blood cells which protect you from infection and disease.
The statistics were stark. Michelle was told the treatment had a 30 to 40 per cent chance of success, and this time the side effects were much more dangerous.
“For this one there was the possibility people can go into a coma, you can have seizures, neurological toxicity,” she explains.
“Loads of stuff that I hadn’t heard of before. And it was sad because, yeah, it was scary, but I didn’t have a choice.”
‘It feels like you’re locked in your body’
Monitored as an inpatient after receiving the therapy, Michelle endured many similar side effects to those of chemotherapy.
Yet two weeks in, she woke up from a nap and realised she was suffering from neurological toxicity, which saw her moved to intensive care.
“When I woke up I couldn’t speak,” she says. “It feels like you’re locked in your body. My brain was still functioning and I just couldn’t communicate to the rest of my body.
Girl reveals harrowing cancer battle left her unable to talk or move
“It was a mission to move my limbs. The staff were helping me to do it and they pretty much weren’t working at all. If I concentrated on moving my arm for a good two minutes I could probably raise it slightly, so it wasn’t complete paralysis, but I couldn’t even go to the toilet.
“Obviously you’re being sick and your bowels are going at the same time. I was trying to communicate to the nurse that I needed to go to the toilet and I couldn’t physically move my body to point to something.
“It was horrendous, she couldn’t understand what I was asking for and there was nothing that I could do to indicate to her what I needed.”
Fortunately, the horrific side effect quickly began to subside.
However, isolated in the hospital from her parents, three brothers and girlfriend, Michelle felt she had nowhere to turn to for support.
With her loved ones unable to visit, she explains she felt reluctant to “burden” them with how she was feeling, as she knew they “would have just sat at home and not slept”.
“If I’m honest, I really didn’t cope,” she says. “I’m not going to sit here and say I got through and tried to be really positive. There was just no coping, you get on with it and hope the next day isn’t going to feel as long as the last one did.
“It was the worst my mental health had ever been. It’s still difficult to talk about how I felt at that time, but I was ready to give up completely.
“I didn’t think I could do it anymore. It had been a year of constantly being in the hospital, constantly on new treatments putting your body through something new every day. I just thought, ‘Is this it, is this life now?'”
Anxiety and trauma linger after getting all-clear
After two weeks alone, Michelle was able to move to a nearby hotel, where she could travel to the hospital for treatment and see her girlfriend, Hannah.
Incredibly, the treatment was a success and in January she celebrated going into remission with her family. She is now back studying film and TV production at the University of Hertfordshire, and hopes to become a cinematographer.
Even now, though, she says the mental scars of her ordeal have lingered.
“It’s something that stays with you for a long time,” she says. “I’m still working on trying to fix my mental health, still working through a lot of the trauma. A lot of the anxiety over that period still hasn’t left.
“A lot of people think you go into remission and it’s like, ‘OK we’re done now, we can move on. But for people who go through the treatment, especially young people, that’s really not the case at all.
“Honestly, I feel like a different person since before treatment. It changes you so drastically. I’d never suffered with anxiety and depression before, but all of the anxiety from going through what I went through has manifested itself in my regular life. It still makes me sick.”
During her second diagnosis with cancer, Michelle documented her journey on TikTok and YouTube, and found it opened her up to a community of fellow young patients who could relate to her experience.
She was also contacted by the Teenage Cancer Trust, who organised access to therapists, youth coordinators and benefits.
‘I was too scared to ask for help’
Looking back, she wishes she had known to reach out for such support after her first diagnosis and dreads to think “how much difference it would have made if I’d got it from the start”.
“The first time I got diagnosed I didn’t have access to anything,” she says. “I desperately needed it and I wish that it would have been there from when I got diagnosed but I was too scared to ask.
“The important thing to realise is that for any young person – or people in general – after you get diagnosed, your head is absolutely racing with all the things you have to consider. You don’t want to add on top of that having to search for psychologists or support groups.
“It’s so important to have the hospital consider that when they’re diagnosing – to support mental health from the start. It’s just not something you can cope with. There are too many things that are happening.
“Your anxiety is through the roof, your whole life is essentially uprooted right in front of you. We push our mental health aside because your physical health comes first. But it is just as important. Look now – I’m physically well, but I’m still badly struggling with the mental side of it.”
Dr Louise Soanes, chief nurse at Teenage Cancer Trust, says: “Young people are at a unique stage in their lives. They are discovering who they are and undergoing rapid developmental changes.
“A cancer diagnosis pauses that – they suddenly lose any newfound independence, and they don’t know whether they’re going to live or die. Meanwhile, life around them goes on.
“Psychological support is as important as the treatment for the cancer itself. Yet more than a third of young cancer patients we spoke to have had no, or reduced access to specialist support in the six months prior to being surveyed. This must improve.
“Tailored and comprehensive support to deal with the impact of cancer is vital because without it, there’s a risk young people’s mental health trauma will outlive their cancer diagnosis.
“That’s why we’re calling on UK governments to keep young lives on track by ensuring this desperately needed specialist support is available from diagnosis wherever a young person lives.”
“Before the pandemic, a study exploring young people with cancer’s mental health during treatment showed 90 per cent reported anxiety, 83 per cent felt loneliness, 70 per cent faced depression, and 42 per cent experienced panic attacks.
“High demand for mental health support is not new, but Covid-19 has meant that young people with cancer have never needed it more urgently.”
The Department for Health and Social Care have been contacted for comment.