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Navigating the path unknown –James’ story.

James was first diagnosed with a brain tumour after having a seizure in 2018. Since then, he has had two awake craniotomies and a string of treatment types. Here, he shares his story on how he has navigated the uncertainty which came with it all.

James Hudd on 40th birthday

When James Hudd woke up with a weird tingling in his arm during the middle of one night in August 2018, he could never have predicted what was to come. He brushed it aside and continued to get on with his busy and successful career as a freelance sound engineer. His GP said to get in touch if it happened again.

Five nights later, James woke up to a similar, but more intense, sensation spreading further over his body. He went to the bathroom where he was sick and then he promptly passed out. He woke up with an incredible headache and a sore tongue having bitten down hard on it. Still relatively unconcerned, James called 111 in the morning who told him to go to A&E. It wasn’t until after James’ diagnosis that they found out that these incidents were actually his first seizures.   

James had a CT scan at Kings College Hospital in London which found a lesion on his brain. This was a huge shock to James – but he did have some knowledge of brain tumours as his dad had been diagnosed with a low-grade acoustic neuroma which he had removed when James was 35 years old.

But, James’ tumour was a little different – the medical team were confident it was a high-grade tumour. The best treatment option was for him to have an awake craniotomy. For the operation, James was given Gliolan, which is known as the ‘pink drink’, and it helps to highlight brain tumour cells to make them easier to remove.

It was after the surgery that tests confirmed that James had a Grade 3 anaplastic astrocytoma. So, he also needed six weeks of radiotherapy followed by 12 months of chemotherapy.  Ahead of treatment, James had some sperm frozen to preserve his fertility which is kept for 10 years. After that, he also gave consent to be an anonymous donor. Fortunately, he recovered well from the treatment and had minimal side-effects although he did take time off work for it.

James said: “After the surgery and treatment, I just had to accept that there was a ‘new me’ now. I couldn’t live my life as I used to – I couldn’t work as freelancing was too demanding for me. There were – and there are now – things I just can’t do and I had to accept that rather than fight against it. Things did improve over time but it just wasn’t the same.

“You never find out about these things in the way you think you will. There was no real ‘frying pan in the face’ moment when I was told about my diagnosis. The information is gradually drip-fed as the medical teams find out more. They also tend to give you some treatment options so my family and I wanted to be fully informed so we could make the right decisions.”

“I had no real knowledge of the signs and symptoms of brain tumours prior to my diagnosis. I hadn’t had a day off work for 10 years either as I was so rarely unwell. I was fit, a runner, and relatively healthy around the reasonably regular hangover. Then all of a sudden, everything just snowballed.”

James.

James and his family, including his sister Jo, were introduced to the team of Clinical Nurse Specialists to oversee his care, practical matters and emotional support for them all. The Brain Tumour Charity used to fund a CNS at Kings as the Charity believes in the value of the support and guidance this provides. It was through their CNS team that James and his family first found out about The Brain Tumour Charity. They were impressed and welcoming of the charity’s offering from the very beginning.

Jo said: “I honestly am not quite sure how we would have been able to navigate James’ diagnosis without the support of our CNS team. Every team is obviously overstretched and incredibly busy but this meant that we had a place to go to with all of our questions and queries without feeling like a burden. They also knew how to deliver the not so good news sensitively and appropriately. Even through lockdown, we have felt supported and listened to. I worry for the people who don’t have that kind of help as, for us, it was simply invaluable.

“I would advise people against using Google for information but instead to reach out to trusted sources, like The Brain Tumour Charity, too. When you or someone you love are diagnosed with an illness, there’s an overwhelming pull towards finding information and being about people who are going through a similar experience. The Brain Tumour Charity, with its support groups and informative and trustworthy website, do all this and more. Knowledge is power so that you can live comfortably in your own circumstances.

“We also wanted to support the Charity because of the great work it does to support us as well as other people who are in our shoes too. The underfunding of research into brain tumours is woeful too and this really needs to change.”

James has been using The Brain Tumour Charity’s app, BRIAN, throughout his experiences. The app was developed to help people through diagnosis, treatment and recovery by providing a handy place to log symptoms, emotional wellbeing and medication. It also contributes to research by sharing anonymized data and insight with experts dedicated to improving brain tumour care and ultimately finding a cure.

James said: “The BRIAN app is great for logging how you feel in those moments of much-needed self-reflection.  It’s too easy to forget exactly how you have felt or what symptoms you had on a particular day. BRIAN overcomes all this so you have the information you need to hand when you go to a consultation. It also helped to reveal trends in how I have been feeling which could have gone unnoticed otherwise.

“The whole process following a brain tumour diagnosis is scary but it feels so much more manageable when it’s broken down into chunks in the ways which the BRIAN app allows. I really hope and would encourage more people to use it as it is clear that a lot of thought has gone into its creation to help people like me.”

Jo said that there have been practical difficulties alongside the medical matters around James’ diagnosis. Navigating the benefits system and understanding what they qualified for as a family or not was emotionally fraught and logistically challenging, such as when James had to attend job centre appointments.

She said: “You develop a certain empathy and appreciation of the nuances of life when something like this happens. It’s an understanding which only happens if you have been through the difficulties such a diagnosis can bring. Everyone is different so there’s no blueprint when it comes to brain tumours.”

It was after a year of chemotherapy that James decided to start blogging about his experiences. He wrote some posts retrospectively and welcomed the opportunity to reflect on all that had happened so far. He also wanted to tell his story to try and increase awareness of brain tumours, reach an audience wider than his own circle of friends and family and also provide a place to answer the regular stream of questions which his loved ones would have.

Looking back now, the blog provides a useful, if also sometimes painful, reminder of how far James has come over the years. As treatment has impacted James’ use of his right hand side in recent months, he has moved on to video blogging including filming a seizure to show the true reality of his experience.

James said: “I think we were all in a state of blissful innocence in those early stages. The blog is not an easy thing to look back on – sometimes it feels so alien that it’s like reading it all for the first time. But it was and has been a good thing for me to do.”

As James finished his chemotherapy in 2019, he was feeling well and looking forward to what was to come in a more positive future. It was whilst James was getting stable scans that Covid hit. James didn’t need to shield but he took close precautions. His scans all went ahead although one was delayed but was carried out when possible following support from their CNS to get it booked in.

James and his pet dog, Ava.

Prior to the pandemic, James had secured a place in that year’s London Marathon but, when the event was postponed, he ran it virtually instead for Macmillan Cancer Support. He also ran a half marathon for The Brain Tumour Charity and James and Jo both did 10k for the organisation too. James took on the London Marathon when it finally went ahead in October 2021. This was with a malignant brain tumour. This was whilst having more chemotherapy. This was just three weeks after a major seizure which saw James bluelighted to hospital. This was the first seizure since April 2019 so it was unexpected to say the least.

James had been at a bus stop on his way to visit his mum when he suddenly experienced numbness then pins and needles down his right arm. He tried to get the medication he carries with him for such occasions out of his pocket but he couldn’t manage it. James summoned help from passersby who called an ambulance as the seizure intensified.

He slipped in and out of consciousness as he was rushed to hospital so he was put into an induced coma. James has no recollection of the seven hours which followed so he asked to see his medical records. They show that he was tracking the lowest score on the Glasgow Coma Scale, which basically means that he was completely unresponsive and was unable to breath unaided. The ambulance crew had also called ahead to the hospital to request a response immediately on arrival. James was nearly put on a ventilator but fortunately, as an attempt to do so was made, he was sick which meant it was no longer required.

Despite a hospital stay and some problems with his speech for a short period of time afterwards, it was just three weeks later that James got his trainers on. The resulting CT and MRI scans showed that James’ tumour was still stable so the cause of the seizure could only be put down to exertion. Following advice from his neurologist and oncologist, he decided to still take on the London Marathon at a slow and steady pace. He crossed the finish line in five hours and 31 minutes to raise £9,000 for Macmillan Cancer Support.

Jo and James on fundraising runs.

Earlier that year, as 2021 had got underway and following some concerns over tumour growth revealed by the scan which was rearranged due to Covid, James was given a number of treatment options and he chose PCV chemotherapy. The treatment is a combination of three types of drug given both intravenously and in capsule form with the aim of destroying quickly dividing cells. James had six cycles of treatment which were for 42 days each time. A further scan showed that the concerning enhancement had reduced.

The joy this brought was sadly short-lived. In April 2022, a routine scan found that the tumour had potentially once again grown or that James had scarring from previous rounds of radiotherapy. There was no way of being certain without more surgery. So, another awake craniotomy was carried out. This confirmed that it was tumour regrowth so as much was removed as possible. The surgeons told James afterwards that he would experience some temporary speech difficulties and reduced use of his right hand side due to the location of the removed tumour. It was also confirmed that the tumour was now a grade 4 astrocytoma so James once again needed chemotherapy.

However, whilst this treatment was underway, some of the tumour which had been removed was sent for genetic testing of biomarkers or mutations which could be causing the tumour to grow. This came back with some unexpected results. James matched the requirements for a specific clinical trial.

The test revealed a rare genetic mutation – ‘Met Fusion’ – which causes proteins to bond together and make cells mutate into a tumour. This is common in lung cancers and The Royal Marsden Hospital was looking into its role in brain tumours too. The trial was to test an inhibitor drug to stop the proteins from bonding together and therefore halting tumour growth.  As part of the trial, James’ chemotherapy was paused and his regular scan schedule was amended so that it was in line with key stages for review of the trial.

James said: “When my consultant found out about this clinical trial, there was a lot of excitement and keenness for me to be involved. I know that being optimistic is the best option for me but that’s not always easy. I also know that the treatments I have had before have gone through these strict processes to be approved. So I wanted to do what I can to help other people like me in the future too.

“But it wasn’t without its concerns. Stopping chemotherapy is a big decision but I want to try everything I can so I am comfortable that it was the right thing to do. This is a really targeted type of treatment and the chances of someone having the right match for this particular trial are incredibly small – less than 1% of people with brain tumours qualify for it. So I am grateful for that.”

Sadly a few weeks into the trial, an early MRI scan to look into why James was having some neurological changes, found that the tumour had continued to grow. The difficult decision to take James off the trial had to be made as it became clear that it wasn’t working for him. James will soon be seen by the team at Guy’s Hospital to discuss next steps for his treatment, which is likely to mean resuming chemotherapy.

“Living with an uncertain future is difficult. Everyone has always been saying to me that everything is great and that various types of treatment have been going well despite setbacks like stopping the trial. But I know that this is all really heading in one direction and, at some point, things will not be good. That makes me nervous as I don’t know how to react to that.”

James.

Despite this unfortunate result, James says he feels privileged to have been part of the trial which could prove to be vital for others diagnosed with this type of cancer in the future. He and his family are also striving to maintain a positive outlook as they continue through their experiences.

James added: “In the past, I have carried on with life as normal and I kept working a lot when maybe I should have spent more time with my brilliant family and friends instead. I loved work but now I do find that I have to ask ‘what was the point?’ I think that you either get busy with living or you get busy with dying. Nobody is getting out of here alive and we don’t know what’s around the corner – so I do know that we have to try and embrace it and cast aside worry as much as we can.

“I am learning to live in the present and to not think too far ahead. I think about the ‘now’ and what I am going to get on with on that specific day. I have a new level of adapted independence alongside accepting help, especially after losing much use of my right hand side. I also have to be mindful not to spend too much energy too quickly each day so that I have the ability to get to the end of each one and to spend it in the right way too.

“Brain tumours absolutely devastate people’s lives so the ultimate goal is to increase research funding to find a cure and also to boost awareness of the signs and symptoms of the disease. I can only hope that, throughout all of my experiences, that I am doing my bit to help contribute towards that in even just a small way.”

You can find out more about James on his blog here or follow him on Twitter @HuddJames.