In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Father-of-three Mohsin Mughal, of Luton in Bedfordshire, was diagnosed with a brain tumour on his 15th wedding anniversary on May 2022. His symptoms included pains in his shoulder and foot, a loss of hearing, muddled words and confusion. The 42-year-old, who was working as a specialist biomedical engineer, later learnt that he had an inoperable grade 4 glioblastoma (GBM). He has had radiotherapy and chemotherapy and is now hoping to travel to Germany to source life-prolonging treatment, for which a crowdfunding page has been set up.
Here is Mohsin’s story, as told by his wife Rohima…
Mohsin lives for his family and is a dedicated and incredible dad to our three girls, Inaaya, 12, Arissa, nine, and Eyva, four. He has been a devoted husband and friend, showing unwavering support and love to me for more than 15 years. Everything he does is for our family because, in his words, we are his world. Mohsin has a selfless and generous spirit and has always been our constant, our North Star, giving us direction and strength. I have had a series of health issues over the years and he’s never left my side. All my pregnancies were difficult; I was in and out of hospital but he was always with me, calming and almost superhuman, so I never had to worry about the children or other members of my family. There was nothing he was not willing to do to help me and the people we love.
“Since his diagnosis, I’ve had time to reflect on how lucky I am.”
He’s the epitome of a wonderful human being; selfless, caring, dependable and supportive. Everyone who meets him gravitates towards him; he has a heart for people as he’s always caring and accommodating. Although he’s incredibly sick he never complains and remains hopeful and encouraging to those around him. Mohsin and I have got through the darkest days and experienced the greatest joys of life together. Sadly, this disease is changing him, and I find myself feeling helpless. He has always loved the outdoors, and most weekends we would be out either bike riding, swimming or hiking, however, although he still tries, he finds it difficult to engage in these activities now. His positive outlook on life remains but, because of his Aspasia – the difficulty he has with his language and speech – he cannot express himself or explain what he wants or needs and, most devastatingly, he struggles to communicate with our children.
“Glioblastoma (GBM) seems to just take and take and take.”
Mohsin was very independent and had a love for being on the road. His job as a specialist biomedical engineer involved driving for hours and he enjoyed the freedom of being behind the wheel, something he is no longer allowed to do because of his tumour. He was incredibly DIY savvy and always fixing something. When we purchased our home in 2014, it was run-down and needed to be completely renovated, so Mohsin did a lot of that work. Now he suffers from fatigue, debilitating joint pains and confusion, and he finds it difficult to problem solve and painful to pick up his tools. He sleeps a lot, often during the day, so he struggles to function as he used to and, although he continually tries to push himself, it’s not without immense struggle.
“The limitations of this illness are simply crushing him.”
He also had an amazing memory and could recall a telephone number or license plate after seeing it just once, but he often struggles to remember or know how to say our children’s names now. He is impacted emotionally too and apologises every day for having cancer. I feel like he lives in a continuous torment of guilt, and his pain is clear to see every time I look at him. He used to brush and braid our daughters’ hair and would make breakfast with them every morning. Now no matter how hard he tries, he struggles to get focus in the mornings and can no longer use hair ties or grip their thick hair. He’s never been a quitter though and his determination sees him continue to be a hands-on father and he still does as much as he can for us, despite his challenges.
We started fostering about six years ago. We both had full-time jobs but had always wanted a big family and, with me having so many problems with my pregnancies, that was the obvious answer. We’ve fostered around 25 children but after Mohsin’s brain tumour diagnosis, that also had to stop.
“We had to make the difficult decision to place our foster child in the care of another family to avoid the trauma of a potential bereavement, which has further compounded our sense of loss.”
“We first noticed something wasn’t right about a week before Mohsin was diagnosed, but of course we never expected it to be something so serious."
We had noticed a decline in his hearing, in his left ear, which is the same side we now know his brain tumour to be on. We would be talking to him one minute and he’d say he couldn’t hear us, so we’d speak louder and he’d ask why we were shouting. About 10 years earlier, he’d had to have his ears cleaned to get rid of a build-up of wax and so I assumed his left ear was blocked again and told him he should make a GP appointment.
A few days earlier he had a pain in his shoulder which had travelled to the heel of his foot, but we thought he must have pulled something and was suffering from nerve pain as a result. Then one night, following the problems with his hearing, we were sitting down watching TV and he asked me to pass him the phone, but he didn’t pronounce it correctly and said ‘gomb’. That’s when I told him that, if we couldn’t see the GP, we will go to the walk-in clinic at Luton and Dunstable Hospital’s A&E the following day, which we attempted to do but there was a five hour-long queue, so hesitantly we left without being seen.
That weekend I noticed Mohsin had become hypersensitive and was crying over minor things, but his physical symptoms had all but disappeared. We even attended a family function and went clothes shopping in London, but on the Monday, after driving as normal and dropping the children off at school, he went to the pharmacy to collect a prescription and couldn’t remember his name or address. I thought he might have been having a stroke and went to meet him at A&E where, despite my pleas, due to COVID restrictions, I wasn’t allowed in at first.
“Two hours later I got a call from a hospital receptionist who said she’d been passed a phone with my number on by a man who wasn’t speaking.”
I thought Mohsin had already checked in and was waiting to be seen but for two hours he’d been sitting there without anyone attending to him. I gave her his name and they immediately took him through to assess him, also suspecting that he was having a stroke.
Next, I got a call from the stroke team telling me they couldn’t assess him because he couldn’t communicate. It was horrible thinking about him sitting there for hours so scared and confused. I went through his medical history and asked if it was possible that he had a low-grade tumour. His face wasn’t drooping, which made me question what else could be going on. They ordered an MRI and a CT scan. The MRI machine was broken but the CT showed a mass on his brain.
“It was 23 May, our 15th wedding anniversary, and this wasn’t how either of us expected to spend it.”
I thought back to the week before, when we were at a funfair and Mohsin had gone on all the rides and seemed absolutely fine, and to January when we had all caught COVID and, like us, he had suffered from severe headaches, but he had recovered within a week. April had been Ramadan and, again, he had complained of headaches but that’s normal when you’re fasting, and they hadn’t lasted so we had paid them no attention. Now they were all I could think of.
Mohsin was kept in overnight so that he could have an MRI. As well as the mass in his brain, this showed multiple haemorrhaging suggesting that he’d suffered multiple strokes, and he had severe oedema. They also did a full-body CT which came back clear. A doctor told me, very matter-of-factly, that she thought he had glioblastoma (GBM). She said it was malignant, we were not to google it, and the scans had been sent to the UCL Institute of Neurology and Neurosurgery in Queen Square, London, for confirmation of what we were dealing with.
Meanwhile, Mohsin was put on steroids to control the swelling around his tumour and anti-seizure medication for severe tremors. He was also having processing issues and couldn’t understand what the doctors were saying. At times he couldn’t even remember the names of our girls, or his parents, which was painful to witness. The hunger caused by the steroids was insatiable and I struggled to keep up with his constant need for food. Thankfully, as his dosage was tapered, so too was his hunger. The steroids also caused him such severe bruising and swelling that it made having blood tests difficult. The nurses exhausted the areas in his hands and elbows and often left him bruised and in pain as they searched for new ones.
“When they told me he had stage 4 cancer, I literally fell to the floor.”
I was crying my eyes out and had to be taken to the staff toilets to wash my face because I was the only person Mohsin could understand and communicate with, so needed to compose myself. When I returned, he kept saying ‘something’s wrong, what is it?’ I reluctantly told him that he had cancer and he said ‘OK, can we go home?’ It was obvious he just couldn’t process what I was telling him.
UCL was supposed to review Mohsin’s case at its weekly multidisciplinary teams (MDT) meeting but for some reason that didn’t happen, which meant we had to wait longer for their recommendations. His health continued to decline and he lost the sensation in the right-hand side of his body, meaning that he could still move it but he couldn’t feel it. He also started suffering from short-term memory loss and paranoia. He wouldn’t take his medication or eat the food given to him and even tried to walk out several times. When I was by his side, he was calm, but, if I stepped away for any reason, he would freak out. The doctors said it was probably because he considered me his ‘safe space’ and was trying to find me. He would also call me and need constant reassurance because he didn’t understand where he was and just wanted to go home. It was extremely painful to watch a man who was robustly independent become so helpless.
“One of the nurses commented that his behaviours were similar to that of dementia patients.”
My nephew’s wedding was coming up on 30 May and Mohsin really wanted to go because he was very close to him. As we were waiting for the MDT meeting and had already been told Mohsin was stage 4, I asked the consultant if he could go, thinking it was better to spend the time together making memories than lying in a hospital bed. They were not going to do anything more over the weekend, so she agreed. She gave me his tablets and told me to bring him back in if he had a seizure.
I had to support Mohsin as he walked, and the other guests kept asking if he was cold because he had such severe tremors, but we made it to the wedding. Sadly, at one point he started suffering from sensory overload because of all the lights and music, which his brain couldn’t process, and I had to sit in a side room with him until the wedding had finished, but he was still so happy to be there, with us.
After an agonising wait, on 5 June Mohsin was taken into UCL to prepare for a biopsy. He’d never seen an image of his tumour so I asked if he could, which is when the penny finally dropped for him that he had cancer, and he cried. I was told he didn’t have the mental capacity to make medical decisions for himself. I remember getting upset because I knew he was able to communicate, but not as easily as before and they were wearing masks which made it even more difficult.
“I didn’t want to take that decision away from him but the doctors told me I didn’t have power of attorney and so they had the legal right to make medical decisions on his behalf.”
Due to the chaos caused by train strikes, I was told I could stay with Mohsin on the ward, but the night staff wouldn’t allow it, so I was left walking the hospital corridors overnight until I was allowed back on. It was a very trying time! Fortunately, the procedure went OK and Mohsin was allowed home the next day. However, a few days later we received an apologetic call informing us that the sample taken was necrotic, consisting of dead tissue cells, and so he’d have to have another one. We were devastated. On 13 June another biopsy was conducted. Most importantly though, this time Mohsin explained that it was his body, his right, his choice, and after a battle, they allowed him to sign his own consent forms, which was really empowering for him.
“We have since ensured that I have power of attorney over his medical needs.”
On 22 June, after an agonising month-long wait, it was confirmed Mohsin did indeed have GBM, but we were told it was inoperable due to its location. Mohsin himself said he’d rather risk being disabled by surgery than die because of the tumour, but the doctors said if they couldn’t confidently take out 95%, they wouldn’t attempt any removal whatsoever.
“The oncologist we were referred to told us Mohsin had three months to live, but with radiotherapy and chemotherapy could prolong his life up to 12 months.”
We were immediately referred to a palliative care team and felt we had no choice but to proceed with the suggested treatment. Mohsin started it on 13 July, five days before his 42nd birthday, on which we renewed our wedding vows, and finished on 24 August.
“It was really hard on everyone because we live in Luton, Bedfordshire, and had to travel into London every day.”
Our children broke up from school on 22 July, so they spent their whole summer driving their dad back and forth to appointments, often on a gridlocked M1 or M25. It caused Mohsin immense fatigue. He also suffered from sickness and a loss of appetite. One day instead of a three hour round trip, it took us over five hours!
“We’ve just had devastating news following Mohsin’s latest MRI scan.”
It was brought forward because I was keen to get a second opinion on the surgery aspect of his case, as advised after talking to several hospitals in America and CeGat in Germany, and I’d noticed much deterioration in his health, which made me worry that his tumour had grown. Now my worst fear has been realised. I’d already been searching the world far and wide for different treatments after finding out his tumour was wildtype and unmethylated, so less likely to respond effectively to chemo drugs, but now we know it hasn’t worked, this is more urgent than ever.
There are some good treatment options in the US, but we are not able to get insurance to take Mohsin there. However, I’ve found IOZK Immunotherapy and CeGat in Germany, which are extremely expensive and would need to be started soon. The cost of these is beyond our means, so we’ve been crowdfunding to try and make them happen.
IOZK offers a personalized therapy, which aims to mobilise the body’s own immune response so that it can fight against the growth of the tumour. It costs an estimated £100,000-£116,000 and can start around four weeks after the end of chemo, so we’re looking to get Mohsin there for the first week of October. We have been told he is currently a good candidate because his mobility isn’t too affected, something some people wrongly assume means he isn’t as sick as he is.
“However, if his mobility and symptoms deteriorate further, this treatment may no longer be accessible and so we cannot wait.”
CeGat uses genetic tumour diagnostics to tailor individual treatments and costs around £60,000. Researching everything has been a bit of a minefield, but we have paid for private consultants to get impartial opinions about the best course of action and hope these options will allow Mohsin more time to watch his children grow up. It’s been very stressful though, and I’ve lost a lot of weight and sleep as a result. I live in a world of doubt and constant uncertainty now, always wondering if I’m doing the right thing and not wanting to fail Mohsin or our children.
“It’s frustrating to feel like there’s treatment out there for him, just a train ride away, but to know we still don’t have access to it.”
We’re incredibly grateful to everyone who has donated so far. Their support has given us the hope and strength to keep fighting. It’s overwhelming to think so many loved ones and strangers would want to help our little family.
“We’re humbled by everyone’s generosity but the reality is that the costs of private treatment are astronomical and we still have a long way to go to be able to afford it.”
“After apologising for having cancer, the first thing Mohsin said to me after learning about his tumour was: ‘will Eyva remember me?’”
His faith is strong; he’s told me he’s not scared of dying because he’s had a good life, but he is scared of what will happen to our family should he pass away. He’s not ready to give up on us and we’re not going to give up on him either. We know we don’t have a lot of time left before we miss our window of opportunity for treatment, but we are desperately hoping and praying that we succeed. To help us, please visit www.gofundme.com/f/Mohsinsfight.
Brain tumours are indiscriminative; they can affect anyone at any age. They 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.
Brain Tumour Research is determined to change this.
If you have been touched by Mohsin’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
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