In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Steve Pain, a BT manager from Carshalton, South London, was diagnosed with a brain tumour, later identified as a glioblastoma (GBM), in December 2016. He had been slurring his words, his face had drooped slightly on one side and he had developed debilitating headaches and numbness in his left hand. He underwent three debulking surgeries, a cranioplasty following an infection in his bone flap, high-dose and low-dose radiotherapy, three types of chemotherapy, and immunotherapy as part of a clinical trial, but he passed away in November 2020 just days before his 53rd birthday.
Here is Steve’s story, as told by his wife Rachel …
It sounds like the greatest cliché in the world, but Steve was a really happy-go-lucky guy. He was the strong, dependable type who wasn’t fazed by anything, and so supportive. His biggest loves, besides his family, were weightlifting, clay pigeon shooting, hockey – he used to play for county and was playing for a veterans team when I met him – and fast cars. He used to own a track car but was forced to grow up when we had our son, Joseph, because they aren’t sensible cars you can put a baby in the back of, but we still went to watch F1 races at Silverstone.
“It was a weekend in mid-December 2016 that I noticed him slurring his words.”
I thought maybe he had an ulcer but I mentioned it to him. He was otherwise feeling well so we weren’t overly concerned, but towards the end of the week I insisted he went to the GP. By then his mouth was drooping slightly. I once had a friend with Bell’s palsy so thought it could have been that. Our GP, who agreed it was a possibility, sent us for a scan.
When we got to St Helier Hospital in Sutton, we were given the option of waiting a long time for a scan or coming back the following week to have one at a pre-arranged time. We were fed up with waiting around so decided to return the following week. During that time, we attended a party at my aunt’s in Gloucestershire and Steve drove us there and back. He was embarrassed about slurring his words and had also started getting headaches, for which he took Ibuprofen. By the Monday, his headaches had worsened and he was taking Co-codamol for pain relief.
The next day was the day from hell. Steve went to bed early but woke up unable to move. He had excruciating pain in his head and his left hand had gone completely numb. He struggled to get up and, when he did, he vomited. Our GP told me to bring him in but he threw up on the way there and was walking like a zombie. She advised us to go to St George’s Hospital in Tooting for a scan.
“It was at least a 20-minute drive and I was really worried about Steve because he looked half-dead.”
We waited to be assessed and triaged and, whilst there, we got a call from St Helier saying they could fit us in later that day, so back we went. Steve was so bad they asked if we were sure he was well enough to have the scan. I insisted they did it and told them he wasn’t well which is why he needed it. He came out with a concerned-looking radiographer holding his arm and saying he needed to go to resus.
“Steve threw up in the waiting room and it was carnage everywhere we went.”
Eventually, he was admitted and hooked up to a monitor. Meanwhile, Joseph was still at primary school so I rang a friend and asked her to pick him up and keep him at hers. Later that night, I learned Steve’s scans had been sent to St George’s for an urgent review because of a suspected a 4x4cm mass on his brain. Steve was moved to an observation ward and given intravenous (IV) painkillers and steroids to reduce the swelling around his tumour.
I went home to grab some things for Steve and called my mum and friend. I felt numb and was ironing at 2am because I was just so stunned. When I went back to see Steve the next morning, he was sat up in bed looking fine. They took him for a CT chest abdomen pelvis (CAP) to check whether his tumour had come from someplace else, but that was clear. A doctor confirmed there was a tumour on the right side of Steve’s parietal lobe and we were told he was no longer allowed to drive due to the risk of having a seizure.
We were sent home with dexamethasone steroids to wait for the neurosurgical team from St George’s to get in touch. It was then I thought ‘oh gosh, this is really bad’. We had a normal couple of days and I finally managed to get a good night’s sleep, but everything was happening in the lead up to Christmas and we had no idea what was going to happen. It was really unsettling.
“On 23 December, we got a call telling us Steve would be going into surgery five days later.”
On Christmas Eve, Steve’s surgeon, Andrew Martin, rang to talk us through the procedure he’d be having: an awake craniotomy. He explained that Steve’s tumour didn’t have clear margins and it was necessary for him to be awake to ensure his speech and motor functions weren’t affected. He told us he hoped to remove 85% and warned it could be malignant, which would require further treatment.
Steve was always so pragmatic. He was more cross about not being able to drive than about needing surgery. I’d never known him to be scared of anything, but he did get emotional before the op, talking about me and Joseph and the possibility of dying on the table. It looked like he was going to burst into tears, which just wasn’t him. Joseph didn’t know a lot about what was going on at that point.
“He was 10 and only knew that there was something nasty in Daddy’s head that needed to be taken out.”
It went well and 95% of Steve’s tumour was removed. I thought ‘that’s that then, the rest can be zapped by radiation and chemo’. Sadly, it wasn’t that simple. In January 2017, we returned to the hospital to have Steve’s staples removed and to talk to his surgeon. It was then we were told he had a glioblastoma (GBM), which has a prognosis of just 12-18 months. This was a name Steve had heard during his surgery so we already knew it was a possibility. We were then handed over to the Royal Marsden in Sutton for further treatment. Steve told them to throw everything at it.
“He was offered a place on an immunotherapy clinical trial, which he accepted alongside radiotherapy and temozolomide (TMZ), the gold standard chemo.”
Steve began suffering from focal seizures in his face and was given anti-seizure medication. These worsened in March and he came out in a big rash all over his body. He also started complaining of a shortness of breath and developed severe mouth ulcers which made it difficult to eat or drink. The doctors suspected he was suffering from an allergic reaction but he was on so many drugs they were forced to take him off everything and try new ones.
“He was also taken off the trial, which was really disappointing, but his liver was close to failing and he had lymphopenia as a result of too few white blood cells, so it couldn’t be avoided.”
Steve was finding it hard to open his jaw fully, so sought help from a speech and language clinic. He was also getting numbness on his left side, twitchy seizures in his face, and headaches, but he went back to work. We reported his symptoms to the Marsden and they changed his medication but eventually he lost the dexterity in his hands and couldn’t hold things properly, which made him pretty fed up. He also suffered from terrible fatigue, for which he attended a fatigue clinic.
In July 2017, following several scans showing increased tumour mass and swelling, St George’s held a multidisciplinary team (MDT) meeting and recommended Steve had another debulking surgery. We were told this was our best option to prolong Steve’s life and so went ahead with it on the 8 August. It went well and Steve’s symptoms improved as a result, and his hand function returned to normal. He was then put on a different type of chemo, procarbazine, lomustine and vincristine (PCV). We were told this only had a 50% chance of stabilising or possibly marginalising his tumour, but, thankfully, it worked.
Steve was so strong, I don’t know how he did it. He never complained or said ‘poor me’, he just got on with it. At the end of October, we went to Majorca but Steve noticed he was getting short of breath with any sort of exertion. This was attributed to a chest infection and delayed his third cycle of PCV. His fourth cycle was also delayed after he developed a fever in the middle of January 2018 requiring IV antibiotics, and then shingles. It was awful.
“He was so poorly and no one could work out what was causing it, so he was living on antibiotics for months it seemed.”
Steve also suffered with fatigue and his skin turned red and itchy but he continued working and taking the train to and from London. He would literally be wheezing or gasping for breath by the time he got home. Eventually, he was referred to a respiratory consultant at Croydon University Hospital. He had lung function tests which showed his lungs were fine, but he was still having breathing problems. This was treated with steroids and inhalers and he started to improve. His delayed fifth cycle of PCV never took place because we were told it wouldn’t be wise to continue as it could have been the cause of his breathing issues. His next scan showed he'd responded well to the treatment, with clear reductions in the margins of his tumour, which was the best news we’d had for a long time.
“Throughout the summer, Steve remained really well and our lives returned to normal.”
It was as if there was nothing wrong. His scans for the rest of the year remained stable and it was clear taking the PCV had been the right decision. Unfortunately, a scan in March 2019 showed disease progression. It was only after we got the results that Steve told me he had been getting twitches in his face again but had kept it to himself because he didn’t want me to worry.
This time Steve was offered more radiotherapy, but a lower dose over just 10 days. His next scan showed some reduction so, although there was the option of a phase one clinical trial and more chemo, Steve was feeling so well that he opted for regular monitoring instead. A scan in November showed progression but we were told it could have been caused by swelling from the radiation, so Steve was given steroids and sent for a more in-depth Treatment Response Assessment Map (TRAM). This confirmed his tumour was active again so he was offered yet another debulking surgery. We were warned that the margins get increasingly fuzzy with each op, increasing the risk of each surgery, but Steve wanted to do it.
“Although he was functioning fine in surgery, his left-hand side didn’t work properly afterwards, which he found devastating.”
His surgeons thought it was due to bruising and would right itself in a couple of weeks, but it didn’t. Steve had physiotherapy in hospital and became able to move without feeling, even mastering stairs before coming home. He also started a new chemo, carboplatin and etoposide in combination. He was on his third cycle when, in February 2020, he was admitted to the Marsden for 10 days with a fever, rash, pain when breathing and seizures. It turned out he had acute hepatitis and neutropenic sepsis. No one was sure of the cause but it was thought the chemo could be to blame.
“Two days after being discharged, he woke up with his head looking like a football.”
The entire right side of his head had swelled out of proportion. It was really alarming because it didn’t even look like him, more like some sort of alien. We were told to go to A&E at St George’s where it was discovered Steve had an infection at the site of his craniotomy. He had surgery to remove his bone flap and a titanium cranioplasty to replace it. COVID-19 struck at the end of February and, although Steve still had appointments to check bloods and the like, a lot of his consultations were moved to telephone calls.
Eventually I got a carer’s card and was able to accompany him into hospital, which was necessary because of how unstable he was. In March, Steve’s tumour stabilised and he was looking forward to his fourth chemo cycle. Sadly, because of COVID and Steve’s heightened risk of infection, the decision was made to abandon the infusion part of his treatment, leaving only the etoposide tablets, which were delivered to our home by courier. Steve wasn’t happy about it but took his fourth, fifth and six cycles like that.
When disease progression was discovered in June, it was thought the best course of action would be to start Steve on the carboplatin infusion again, which pleased him. However, he was found to have a pulmonary embolism, for which I had to administer daily blood thinners in the form of injections in his stomach. In August he had a fall at home and fractured multiple ribs. It was really difficult to manage him after that and he never fully recovered from it. Steve did get his fourth infusion but a subsequent scan showed progression and we were told he had exhausted all of his treatment options and directed to St Raphael’s Hospice in Sutton for supportive palliative care.
“It was like the moment we had been waiting for, for four years, had finally arrived.”
Steve was quite stoic about it because he always said he was living on borrowed time. There aren’t many people with GBM who live four years. When we got back to the car, we cried for a while and then Steve said ‘come on then, let’s get on with it and stop moping about.’
“He carried us and because he was trying to be upbeat about everything, we were too, and that’s how it was until close to the end.”
I wanted to be able to see Steve and he didn’t want to go anywhere else so we made the mutual decision to care for him at home. We were put on a fast-track care plan and everything fell into place. We were told Steve could have just three months to live, but, in fact, it was just over two months. At first he persisted with using our loft conversion bedroom but he was having more and more falls so, about three weeks before he died, we got all the equipment needed to make a room for him on our ground floor. Everyone helped, including St Raphael’s community team, our GP, district nurses and the NHS community palliative care team, including occupational therapists and physiotherapists. We were also provided with carers three times a day if we needed them.
“It seemed like a constant flow of people in and out of our house, I didn’t have any time to myself.”
Steve continued doing weights to keep his right side strong and worked until nine days before he died. He was offered medical retirement but he wanted to keep his mind active and to be able to get the best benefits possible for me and Joseph. He wouldn’t hear otherwise and then one day shut his laptop and said ‘that’s it.’ After that he went downhill quickly, and ended up on a morphine driver for the terrible pain in his head.
“The last week is still mostly a blur.”
The night before he died, he had a hypoxic seizure. I had tried to move him from a chair into his bed, causing a headrush which depleted his brain of oxygen, probably not helped by the swelling around his tumour. He went stiff, so I squeezed Buccolam into his mouth, after which the seizure stopped and he went into a deep sleep and suddenly started snoring. Paramedics came to check him over but it was decided, as he was on palliative care, that taking him to hospital would not be a good option, to which I agreed. He was unresponsive for most of the following day, so I slept next to him on the sofa the following night. At around 2am, I heard a kind of gurgling noise. He was vomiting and I tried to sit him up. He took in a huge gasp of air and then stopped breathing.
“I thought the big gasp was him choking, but I now know that was one last breath before his brain switched off, because it was too swollen to function anymore.”
The worst bit is that I called Joseph, believing Steve was waking up, so he witnessed it too, and it wasn’t a peaceful passing. I was assured afterwards that Steve would not have been aware of these last moments as he was completely unconscious. I still relive it sometimes, but Joseph has nightmares and has struggled to come to terms with it. It happened just two days before his 14th birthday and three days before Steve’s 53rd. Christmas was hard too but our family rallied around. I know we were blessed with the time we had because it could have been much shorter, but I found myself not only mourning the loss of my husband, but mourning the loss of my caring role. I mourned our way of life and still do sometimes, despite how hard it was.
“I would often think, ‘I don’t care how ill Steve was, I just want to have him back to look after him again’.”
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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