In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“The clinical nurse specialists at the meeting told us not to look his diagnosis up… I was to discover that GBM is a monster; it is relentless and an utterly cruel disease. It not only robs you of who you are, it robbed Darel and me of our future together.”
Darel and I met while at Greenwich University in 2005, although at the time we were on a university sports tour in Spain. The night we met we were in fancy dress – I was dressed as an angel and he was a gynaecologist. Darel was studying Business and Marketing and was in his final year. We were together since the very first day we met and were utterly devoted to each other for 12 years. We were true soulmates.
These years were the time we had wanted to start a family and get married, but life had other cruel plans. I will never forget the phone call I had on 20th November 2014 from Darel’s colleague and best friend at work, telling me Darel had suffered a seizure. I could not even comprehend this at the time because Darel was one of the healthiest people I knew. He never even got colds…. In fact he did joke about this a few months ago, saying: “I don’t get colds, I just get brain tumours”.
Darel had picked up his car keys to attend an appointment when he had the grand mal seizure. He worked for Affinity Sutton housing association and was probably the most popular person in the office. He was always making new friends whenever we went out and made lasting impressions on everyone he met.
Darel was taken to the Princess Royal Hospital in Farnborough, which was closest to his office in Bromley. Upon arrival the doctors told us they could see three lesions on his brain in the CT scan. I was questioned endlessly about whether we had been on holiday and where had we gone in case it was some kind of infection. The Princess Royal is linked with King’s College Hospital in London where the neuro-surgeons and neuro-oncologists hold weekly multi-disciplinary meetings. We had just missed that week’s meeting, so the specialists at King’s were unable to look at Darel’s scans until the following week.
So now the hospital’s priority was to find out if the lesions were primary or secondary. Darel spent almost two weeks at the Princess Royal and was eventually transferred to the Oncology ward there, where I was able to stay on a blow-up bed next to him. We were still completely naïve as to what the enormity of the situation could be and failed to think this was necessarily ‘Cancer’.
Darel went through full body PET scans, rigorous blood tests and skin checks too. It was finally deemed that the tumour in his brain was primary so we were discharged with a date set for an appointment at King’s College Hospital the following week.
Even from early on, Darel was incredibly positive and we were both determined that whatever it was we could get through it together. In fact the only thing at that time that bothered Darel was that he could not play football for his Sunday league team! Darel lived and breathed football, he played for his work team and at the weekends. He was a superb winger always wearing the number 7 shirt and was talent-spotted by both Crystal Palace and Millwall in his youth. Growing up he played for many South London Sunday league football teams and was then playing in an East London league where we live. He was recently described as “The David Beckham of Hackney Marshes”. As well as playing football, he was a huge fan of Liverpool FC.
At King’s Hospital, we looked at Darel’s scans in great detail and were told that they would like to do a biopsy. They explained it was not possible to have surgery due to the location of the tumours and the multi-focal aspect to them. We were asking the normal questions of how could this happen? What could this be? How do you get brain tumours? The doctor did not have the answers, but he did say he did not think this was benign. I was determined to keep Darel positive ahead of the biopsy.
On 19th December 2014, Darel underwent the biopsy under Professor Ashkan at King’s. By this stage, having been on steroids since his seizure, he had put on two stone in just a matter of weeks and joked he had the infamous ‘moon face’. Darel’s sense of humour never faltered.
As it was the Christmas break, we had to wait a little longer for the biopsy results but enjoyed a lovely Christmas at his parents’ with his sister, whom he is exceptionally close to. He remained cheerful, despite being very tired from the biopsy and his feet being so swollen from the steroids that he could barely put on his shoes.
On the 28th December, we went back to King’s for the diagnosis – a glioblastoma multiforme. Radiotherapy and chemotherapy were the proposed treatment. I was yet to have any idea of the severity of the diagnosis.
The clinical nurse specialists at the meeting told us not to look his diagnosis up and reassured us that Darel was young and healthy and that every patient is different. But I do remember looking at the WHO grade 4 on the piece of paper with the pathology results and thinking this was not looking good. I took the piece of paper and told Darel not to worry about anything and that we were going to get through this!
Of course, I did not stick to the advice not to look up Darel’s diagnosis as I felt that I had to know what we were dealing with. But during the entire 15 months, Darel stuck to it and never looked at anything on the internet or asked what his prognosis was.
Darel was an incredibly positive person and in his mind he truly believed he was going to get better. Most of our friends and family did not know the tumour type either, but Darel was happy with this as he never wanted anyone feeling sorry for him. They did tell us at the diagnosis meeting that they could tell that Darel could not have had the GBM very long, maybe just a few months. It is unfathomable to think how you can be perfectly healthy one day and then have terminal brain cancer the next. It is something I don’t think I or any other families who have been affected by this can ever come to terms with.
To cover all bases, before treatment started, we gained a second opinion from University College London (UCL) and The National Hospital of Neurology and Neurosurgery, who told us they would offer exactly the same treatment. I knew it was vital to try and get Darel onto a clinical trial, but unfortunately he was not eligible for any and sadly never would be. I knew we had to throw everything we could at this, so I started researching all the alternative and complimentary treatments we could try, as well as the conventional treatment.
Darel was due to start his six weeks of radiotherapy at Guy’s and St Thomas’ hospitals in London in January 2015. He was completely unfazed…..even during the making of his radiotherapy mask, saying he could not wait to use it as a Halloween mask to scare kids! His bravery throughout was truly awe-inspiring.
However, two days into his radiotherapy, Darel suffered a crippling headache at home and was vomiting non-stop. I immediately knew something was wrong and called an ambulance. He was taken to our local hospital, the Royal London, where he suffered two grand mal seizures whilst I was in A&E with him. To see the person you love most in the world having a seizure is a terrifying experience.
He was transferred to Guy’s hospital, where a scan revealed one of the larger tumours had grown. The oncologists were extremely worried. His neuro-oncologist, Dr Lucy Brazil, said she would need to replan his radiotherapy to cover a larger area and that he would also have to be stable enough to start the treatment. She said that his larger tumour looked extremely nasty. This was a huge blow and I remember thinking how could this be happening when he had not even had a chance to start his treatment yet.
The Hedley Atkins ward staff at Guy’s were so wonderful with Darel and even let me stay on a camp bed beside him, although I did not give them much choice as I vowed never to leave his side!
Darel showed incredible strength and managed to complete his six weeks of radio and chemotherapy. Months later his oncologist did admit she hadn’t been at all sure if he was going to be able to actually get through it and called us “a formidable force”.
Following the latest seizure and progression, Darel started to suffer with left-sided visual inattention, as well as issues with balance and short-term memory, due to the treatment. He also had terrible side effects from his steroids so we had to change the type he was on.
During the beginning stages of Darel’s treatment, the more I researched about GBM the more scared I became, but rather than focus on the negative statistics I tried to focus on all the long-term survivor stories. I had to believe that Darel could be part of this small group! I refused to accept he had been given a death sentence and I knew I needed to do everything I humanly could – I had promised Darel and his family that I would do so.
The radiotherapy really took it out of Darel and he struggled with extreme fatigue. Then, just after two rounds of a proposed six rounds of chemotherapy, Darel started experiencing crippling headaches and nausea again. He had to be admitted to Guy’s again and we were told that unfortunately the larger tumour was growing yet again. Darel was still unfazed and handled the news with remarkable courage and with the attitude of “onwards and upwards”. He didn’t like to dwell on bad news. I, on the other hand was petrified and was even looking at options of going to the US to find surgeons or different treatments, but Darel was too unstable and sadly these never became an option for him.
Darel was offered a different type of chemotherapy, which was PCV (Procarbazine, Lomustine and Vincristine). During this stay at Guy’s, Darel started receiving physiotherapy for his mobility issues and balance, which later continued as an outpatient programme.
It was the summer of 2015 and remarkably Darel started to feel a little better on the new chemotherapy. His extreme fatigue was wearing off a little too. It was our birthdays in July, a day apart, and we had a fantastic joint party with friends at a local pub. In August we held a surprise birthday party for his mum’s birthday which was attended by many of his beloved family who live in Birmingham.
Darel started to feel well enough to start exercising again and go out jogging. It gave him such a boost that he was able to do this. We managed to gain a little normality back in our lives and were able to go out with friends for a few hours. Darel’s mates would also come and pick him up and take him to dinner for some ‘lads’ time’.
We also moved to a lovely flat by our local park, which we specifically chose for the fantastic view and so Darel could enjoy the outdoors so close to home.
Darel grew up in South East London and his parents still live there so it was great to be able to go and enjoy delicious Sunday dinners at his Mum’s. We were also fortunate to be able to enjoy a lovely weekend away for our friend’s 30th birthday in October.
Darel and I spoke about marriage often and he was really keen to go ring shopping. However, I think in the back of both our minds we were waiting for things to be more stable. I will always regret that we didn’t just go ahead that summer.
In October 2015, however, less than three months after starting the new chemo, Darel’s symptoms of progression started again. We found ourselves back at Guy’s for the fourth time that year to be told the same devastating news that the larger tumour was still growing despite treatment. Darel was now offered CEV chemotherapy (Carboplatin, Etoposide and Vincrinstine). I was completely frantic that our options were running out and fast! We scheduled an appointment at UCL with another oncologist to see if there were any trials he could be part of. We had also previously gone to the Royal Marsden to see if there were any phase 1 trials Darel could join, but due to his instability he could not.
So we went to see Dr Paul Mulholland at UCL and to our surprise there was a consultant neuro-surgeon at the meeting. This surgeon was George Samandouras who had seen Darel’s latest MRI scan and believed he could perform a debulking surgery to help Darel. We were totally surprised by this after being told for so long that surgery was not an option… but we were elated! The surgeon explained he would perform the surgery whilst Darel was awake to minimise deficits to him.
We were really pleased as we felt that now there was a door open to explore opportunities such as immunotherapy if we could have Darel’s tumour tissue frozen. It finally felt like Darel was being given a chance. However we did not really consider the recovery process – we just felt fortunate that surgery was being offered. The surgeon mentioned previous patients were discharged within a week of this type of surgery. Given Darel was young and relatively fit, we expected this to be the case for him also, but we were very much mistaken.
On 4th November 2015, Darel had a 12-hour awake craniotomy at The National Hospital of Neurology and Neurosurgery in Queens Square, London. The night before the operation, the surgeon told Darel and me that he thought Darel would be paralysed very soon if he did not have surgery. After the extensive MRI-guided surgery, the surgeon came to see Darel’s family and me whilst he was in recovery. He said the tumour was so aggressive and large that if he had not have operated, Darel would have died in a matter of weeks.
The surgery left Darel with a lot of left-sided weakness – his left leg was very weak and he could not move his left arm. Surprisingly, however, not long afterwards he did manage to use his arm to reach out for a biscuit in front of him and joked that all he needed was an incentive. Little did we know that things were not going to get much better.
Although the surgery itself had gone well, Darel’s recovery was very slow. He could not walk and remained in Queens Square for four weeks, during which he had daily physiotherapy on the ward and also started carboplatin chemotherapy. After a few weeks the surgery team told us they had expected Darel’s recovery to be quicker and that they were not sure how much movement he would gain back. Darel, however, was determined that with a lot of hard work and treatment he could regain the movement and did not want to focus on anything negative.
Our next hurdle was getting Darel the acute rehab he wanted, but due to the fact he was on treatment and was so fatigued, he was not able to go to any specialist centres and it was proposed he start physiotherapy at home first.
We still had to think about treatment options as I knew the Carboplatin chemotherapy he had just started would not necessarily keep things stable for long. We had managed to get Darel’s tumour tissue frozen from the surgery and we were about to start crowdfunding to either privately pay for a vaccine in the UK or go to an immunotherapy clinic in Germany. But we had to get Darel fit enough for this treatment.
It was decided that Darel would be discharged from Queen’s Square and would have physiotherapy and occupational therapy at home. The hospital therapists had to come to our flat to assess what equipment he needed before the discharge.
After installing various pieces of equipment in our flat, Darel finally arrived home. It was a difficult few days as we both were adapting to the sudden change, given the fact that prior to surgery he had been walking and now was home in a wheelchair.
Unfortunately, after only three nights at home, Darel started to have an extreme headache and was vomiting a lot. He was rushed back to The Royal London again.
We all thought it was complications from surgery, but the A&E doctors told me they thought it was the beginning of the end. I did not want to take that on board until we knew for sure it wasn’t surgery-related. He had an MRI scan and then was transferred back to Queens Square, where the operating theatre was prepped as it was initially thought he had problems with fluid on his brain.
However, when we got there, Mr Samandouras came to see us privately without Darel to tell us the shocking news. Darel’s scan did show some fluid build-up, but also, more devastatingly, revealed that the tumour had grown around the surgery resection margins and was now heading towards the brain stem. The surgeon said he had never seen anything so aggressive happen just weeks after surgery and that he did not know how long Darel had left. Darel’s family and I were dumbfounded, but still questioning what could be done, unable to accept that this was it!
The surgeon suggested he could remove a part of Darel’s temporal lobe, which would not control the tumour, but would control the swelling. However, this was risky – given he had undergone such major surgery only weeks ago. Darel begged for more surgery. Sadly, after a multi-disciplinary meeting with all the oncologists and the surgeon, every oncologist came down against further surgery, stating that it was unfair to put him through this when he was “dying anyway”. All we could rely on was hoping Darel could continue with the chemotherapy.
Darel was declining daily at the hospital. He was unable to receive the next round of chemo, as his platelets were very low. After almost a year of chemo it was clear his immune system had taken a real battering.
Darel ended up staying in Queen’s Square for over two and half months including over the Christmas period. Despite being in hospital, we were determined to have a nice day and his mum made a complete Christmas dinner and brought it all into the hospital!
Many friends and family also visited during these months and despite being very unwell, he always had everyone laughing.
Finally, it was decided that Darel was stable enough to be discharged and we would have a hospital bed set up in our lounge at home. But before that, we were offered the opportunity to go and stay in St Joseph’s Hospice in Hackney, close to our flat, to make the transition back home easier for both Darel and me.
St Joseph’s Hospice was remarkable and it was amazing to have a large private room with a window and to be out of the hospital environment. An added bonus was that I was allowed to stay there with him – much needed after having to leave him at Queen’s Square every night for such a long time. The hospice staff were so kind and provided me with another hospital bed which we could push together to create a makeshift double bed. But just two days into the stay, Darel got shingles and herpes in his eyes and all over his face. It was also thought he had a bacterial infection too. We were fortunate that St Joseph’s could give all the medicine he needed without having to go back to hospital. Darel became very unwell and at one point we thought he did not have long left…. everyone rallied round and we had many family and friends visiting. The hospice also allowed his mum and sister to sleep in the room with us on some air beds for a few nights.
Darel did improve very slightly for a week when he was communicating a little more but was still on a steady decline. Sadly, after five weeks in the hospice, Darel came to the point where he could no longer eat, see or speak and passed away on Friday 26th February whilst I was by his side. He passed away at 11am on what happened to be his favourite cousin’s 11th birthday.
So after six weeks of radiotherapy, twelve months of five different chemotherapies, two surgeries, over five months of hospital stays, nearly four months of being bedbound, every alternative and natural treatment for GBM, diet changes, a nutritionist who specialises in brain tumours in the US, a large cocktail of repurposed drugs… the battle was over and no more could be done to save the love of my life. I tried everything I possibly could but GBM really is a battle that to date is impossible to overcome.
Darel was truly the gentlest, most sweet-natured soul and was universally adored. He would always put other people first and he touched everyone’s hearts. He made impressions on all he met. The doctors, oncologists, physios, nurses and everyone involved in his care all loved him.
There were over 400 people at his funeral, which shows how loved he was by so many.
Words do not really describe the void left in all of our lives and my future. Darel was truly remarkable and did not complain once during the fifteen months. He never gave up his zest for life or his positivity and was utterly fearless. He was a beautiful person inside and out and had the most gorgeous smile, which lit up any room he went into.
Darel fought so hard and although I cannot fight for Darel any longer, I want to honour him in every way we can and carry on the fight. Although it cannot be for Darel, if it is for future patients and their families then Darel’s battle would not have been in vain.
The vital thing is research. Not only do we need to improve the outcome of this horrendous disease, but also understand more about brain tumours and how they occur in the first place. The ‘Gold Standard of Care’ treatment has not changed for many years and is likely to always fail. Better individualised treatment and a personalised approach is desperately needed, considering each patient and each tumour is so different. We also need many more clinical trials.
It is also a shocking fact that so little of our national cancer budget is spent on brain tumours compared with other cancers, especially given the fact that more people under the age of 40 die from brain tumours than any other cancer. Brain tumours are incredibly complex and are such an earth-shattering diagnosis that robs people of their freedom, personality, mobility and future. They leave a crater of destruction for families too and, until you witness it first-hand, it is truly an unimaginable horror. More must be done!
Darel’s family and I are very proud to be working with Brain Tumour Research and have set up ‘The Darel Bryan Foundation’ as a fundraising group. It has been amazing to go to their research centres and see the invaluable research being done as well as meeting eminent people in the field such as Professor Geoff Pilkington.
Through the ‘The Darel Bryan Foundation’ we hope to gain more awareness about this devastating disease as well as gaining support to be able to raise funds into more research. My dream is that one day there can be a better outcome for patients.