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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Anthony Bowes

Fitness fanatic Anthony Bowes, from Bolton, was just 28 when he lost his brave battle with an incurable brain tumour.

His diagnosis came in 2016, after suffering a number of seizures. In the months that followed, he underwent two brain surgeries, radiotherapy and chemotherapy, fighting the terrible disease with strength and determination until the end.

For Anthony’s family, the distress of losing their loved one was worsened by what they felt was a lack of appropriate care immediately prior to his death. They have since received an apology from the NHS and an assurance that changes will be made to prevent the same mistakes being repeated.

Here is Anthony’s story, as told by his mum, Debra…

My son Anthony never once complained about the hand he had been dealt. His main concern was always worrying about us and whether we would all be OK following his passing. That was him all over; selfless to a fault.

Anthony had been complaining to his GP for years. He was suffering from blurred vision, dizzy spells, memory issues, confusion and excruciating headaches. The doctors put it down to anxiety and depression. Following a two-week period off work with strong headaches and anxiety, one GP even told him to ‘get a grip’ and get back to work. Then shortly after, on 10 June 2016, he suffered a massive seizure. They thought it was epilepsy.

 “Anthony was a boxing coach and jiu jitsu enthusiast and was on the verge of setting up his own business as a personal trainer when he began experiencing seizures.”

The second seizure came a month later, when he was playing crazy golf at the Trafford Centre. He was taken to Salford Royal Hospital and was given a CT scan of his brain. Amazingly, the results of the scan came back clear but a precautionary MRI scan a few days later subsequently revealed a mass on his brain. Forty-eight hours later, on 25 July 2016, he was diagnosed with a brain tumour. Anthony was devastated but I took solace from the fact that the surgeon said it didn’t look ‘too bad’. He suffered another two seizures before 19 October 2016, the day of his first five-and-a-half-hour brain surgery, to have the tumour removed. Due to its location, the surgeon wasn’t able to remove all of it but he did succeed in removing 98% of the tumour. He told Anthony that they would ‘zap’ the rest of it with radiotherapy, then wean him off the anti-seizure medication. They then said he would be able to get on with living the rest of his life.

The surgery was followed by six gruelling weeks of daily radiotherapy, which took place over Christmas and New Year. It completely wiped him out and his daily routine became bed, radiotherapy and sleep. Anthony had had to surrender his driving licence and so we all mucked in, driving him to and from The Christie in Manchester, where he was receiving his treatment. It was when signing the consent form for this treatment to go ahead, that Anthony’s oncologist delivered the news that his tumour was ‘malignant’. It was a grade 2 astrocytoma and he was given a prognosis of 12 to 17 years.

“Anthony preferred that I didn’t attend appointments where results were given, as I would get too upset. For that reason, he preferred to go with his dad, John.”  

Anthony’s post-treatment MRI scan was in March and unfortunately, it showed that the radiotherapy hadn’t worked at all. He agreed to start on a year of chemotherapy and managed to complete 11 out of the 12 cycles he had been prescribed. The chemo tablets made him really sick and so eventually, after the 11th cycle, it was stopped with the agreement of his oncologist, as his body was beginning to struggle with the intense treatment. We turned our hopes to various alternative and homeopathic remedies, including cannabis oil, but that made him high and he did not like the feeling.

“We would have done anything to help him. I would have given my own life to have saved him.”

In December 2018 we did enjoy some good news following one of his routine quarterly MRI scans. It showed that the tumour was stable – this was the first positive result we had received and so we all felt quite upbeat. In spite of this, life had changed immeasurably for Anthony. He was extremely forgetful and, due to the unpredictable nature of the seizures, he couldn’t work and couldn’t manage his own medication and so I took on that responsibility, with the help of his wonderful girlfriend, Sophie. Our ‘honeymoon period’ was short-lived, however, as his next scan in March 2018 revealed that the tumour had grown back and was now a highly aggressive, grade 4 glioblastoma multiforme (GBM). He went back to the same neurosurgeon at Royal Salford for a second craniotomy in April 2018. The surgeon said that it was one of the most aggressive tumours he had ever seen, given such a rapid growth in only 3 months. By this point, Anthony had lost a lot of weight. He had gone from being a strapping, muscular young man, in the peak of health, to being a shadow of his former self.

 “He lost all the muscle tone he had worked so hard to build up. The surgeon said without further chemotherapy, he only had around six months to live.”

I have been on my own with my two boys since they were aged one and two, even though they enjoyed a good relationship and regular contact with their father. Anthony was my eldest and had always assumed the role of the ‘man of the house’. He put a brave face on everything but I knew, deep down, he was devastated.

With virtually no treatment options left, he agreed to try 'PCV triple therapy’ chemotherapy; a combination of procarbazine, CCNU (lomustine) and vincristine. The first course made him violently ill and we had to call an ambulance out.  By this point my youngest son, Carl, decided to give up work and help look after him. Anthony was really sick; he couldn’t go out anywhere and had no quality of life. It was at this point that Anthony made the very brave decision to stop the chemo and just concentrate on feeling as well as he could for the limited time he had left, given his stark prognosis.

Anthony was put on steroids to reduce and prevent inflammation around his tumour. As a result, his weight ballooned and he was getting nerve pains in his legs; you couldn’t touch them, as it was so agonisingly painful for him. We had to help him to the toilet. This hideous, vile disease had stripped him of his dignity and by November 2018 he was totally bed-bound at home and could do absolutely nothing for himself. He had fungal infections in his groin and in his armpits. He preferred it that the nurses didn’t wash him so Sophie and I took charge of most of his personal hygiene care. Sophie was amazing – I call her my ‘angel on earth’. They were so very close and loved each other dearly. She went out to work every day and would come back to my house and nurse him with me in the evenings. At night she would sleep next to him with her hand on his chest, as she worried so much that he would stop breathing in his sleep. She was our angel and I couldn’t have done it without her and the many other people who were a big part of Anthony’s care and wellbeing. We had a hospital bed installed in the bedroom upstairs and Anthony’s friends would stop by daily to visit him and watch Tipping Point and The Chase with him. It was nice for him to have some sort of a routine.

“By mid-January, Anthony’s condition had progressed significantly; he had lost his sight, he couldn’t speak or swallow and was on heavy pain relief. He required 24-hour care and could never be left on his own, due to the high possibility of seizures.”

Anthony’s physical strength and fitness was, in some ways, his downfall, as his organs were in such good physical condition that they kept him going. He was fighting until the very end, when other bodies would have given up far sooner. One Sunday the district nurses came and told us to gather everyone around, as they were sure he was nearing the end of his life. But he bounced back from the brink and continued to fight – this happened many times.

The week before he died, Anthony had become really chesty. The doctors were checking his chest and said it was clear but we were getting really concerned. He had rashes all over him. He was getting noisy secretions, as fluid was accumulating in his airways and he was too weak to cough and clear them. On 14 February 2019, we called the doctor, as we could see he was in a great deal of pain and discomfort and we couldn’t get any medication or fluids in him. We waited around four hours before the doctor came and told us that he was starting to secrete and asked us to contact the district nurses to administer the relevant medication through his syringe driver unit. The nurses arrived about two hours later, despite being told it was urgent, and he was now in extreme pain. They gave him then medication for his secretions but refused to give him anything for his pain, as he hadn’t given consent when asked. I explained he could no longer speak or see and his only way of communicating was by squeezing our hands. Then they just left us. Anthony was gargling, groaning and rolling his head back. I rang the out of hours doctor and begged him to come back but it was midnight before anyone came and he’d been screaming in agony for two hours by that point.

“His heart was racing at around 175 beats per minute, peaking at 209 and his blood oxygen levels dropped to as low as 75. He was desperately trying to say something to me but I don’t know what it was.”

When the doctor finally came, he was given morphine and we were told that Anthony’s life was coming to an end. And that was it; he left saying “he will be ok when the morphine kicks in”.  We couldn’t believe it. Anthony was still in so much pain and yet again we’d been left to look after him on our own. In desperation, I rang 111 and spoke to a paramedic. They sent a first responder medic within five minutes. He did all the observations and told us that Anthony was displaying all the signs of sepsis. He couldn’t believe that we’d been abandoned by both the district nurses and the on-call doctor. They then sent a big ambulance with all the equipment needed to stabilise him and, to our huge sadness and disappointment, it was decided that Anthony had to be taken to hospital.

“The paramedics told us that he would pass away within the next few hours. I was desperately sad that my son’s wish to die at home couldn’t be fulfilled.”

I went in the back of the ambulance and Sophie went in the front. When we arrived, along with others members of Anthony’s family, we sat with him and comforted him until his breathing became very shallow and eventually, in the early hours of 15 February 2019, he took his final breath. We were taken into a private room, where we sat with him for a few more hours and Sophie and I helped the nurses to clean him. Sophie’s family came to be with us too. At his funeral, I was totally overwhelmed by the number of people who came to pay their respects. So many of Anthony’s friends and family were affected by his passing. It was an amazing send off to honour an amazing man. The vicar said it was the biggest service he had ever conducted. Recently, on the first anniversary of his death, many of the friends who had gathered to pay their respects at the funeral, came together again for the ‘Leeds Pub Crawl Otley Run’, meeting at the Wilton Arms, where we had the wake.

It took me a ten months to muster the strength to make a formal complaint to the Patient Advice and Liaison Service (PALS) about the way in which Anthony was treated in the final hours of his life. In January 2020, 11 months after he gained his angel wings, we  received a formal apology letter from the Bolton NHS Foundation Trust. It was an admission that they had failed my son and that the district nurses who attended that evening were out of their depth. They said that there had been a lack of advanced care planning, coordination of care and communication between the district nursing team over Anthony’s final 24 hours. It came after I was invited in to receive a verbal apology from the clinical service lead for bereavement and palliative care, the matron for integrated clinical services division and the PALS coordinator. They have kept my letter of complaint for training purposes going forward and tell me they are now committed to improving the care at home provision for future patients.

The failings of the doctors and nurses on that horrendous evening were not the only problems we faced throughout Anthony’s brain tumour journey. It was a battle to get benefits for him and he was turned down for Personal Independence Payment (PIP) three times. His Bolton-based employers were totally unsympathetic to his condition and treated him disgustingly throughout; finally getting rid of him by way of a confidential settlement agreement. They insisted he had this explained to him by a solicitor, so that he couldn’t question this in time, due to confusion issues relating to his condition. That said, through this horrific experience, I also came across some truly wonderful professionals. Maggie’s Centre Manchester was amazing, as was Macmillan and the hospice at home team. I was also comforted through the connections I made online, with other families fighting the same illness. We kept each other going through the darkest of times.

People say time is a healer but I find my grief gets more intense as time goes on. I visit Anthony’s grave three times a week. I felt so honoured and proud to have been his mum. He was kind, compassionate and beautiful inside and out and made me immensely proud every day, inspiring me to be a better person.  On the outside Anthony displayed nothing but bravery but, behind his smile, he knew he had limited time. I hated that tumour for the future life experiences it stole from my son; buying his first home, marriage, children, grandchildren… the list is endless. I love him so very much and miss him every minute of every day. I will ensure that his memory lives on forever.

Debra Bowes
April 2020

 

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, 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.

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