In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“Alan had a CT scan and could see for himself there was a big white lump in his brain. He got his piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.”
Here is Alan’s story, as told by his brother, Ray…
Alan considered himself to be Mr Joe Average, until Saturday 11th January 2014 that is. Sarah, a post lady, had left for work, and at 6.30am, totally without warning, Alan found himself shaking violently. He thought he was having a stroke. Not being able to speak, he messaged Sarah and asked her to ring 999. A paramedic was at the door within six minutes – he turned out to be a guy Alan knew, who he had taught to play the tuba years ago. Within half an hour Alan was at A&E at Scunthorpe General – a stroke nurse met him at the entrance.
It was very frustrating when doctors started talking about Alan as if he wasn’t there. He got a piece of paper and wrote out: “I might not be able to speak, but I can hear you.”
Alan had a CT scan and could see for himself there was a big white lump in his brain. He got his piece of paper again and wrote: “I can see that big white lump. I know I haven’t had a stroke.”
I turned up at the hospital with Darren, Alan’s eldest lad, and Sarah. Alan still couldn’t speak, but he wrote out on some paper to us that he had seen the scan.
Over the course of the day they kept giving Alan steroids and his speech came back partially (although it took two to three days to come back properly). He couldn’t use one arm either.
It wasn’t until 4pm that three doctors came to tell him what he already knew – that he hadn’t had a stroke. Alan said he knew he had a tumour on the brain, but they insisted on calling it a lesion. He felt quite patronised actually and told them he wasn’t stupid. Another doctor came and they all went out into the corridor to talk about Alan. They put him in a four-bed cancer ward where patients kept being admitted during the night and then dying.
On Sunday, Alan was told he needed to see a neuro-surgeon as soon as possible and that he couldn’t go home in his condition. He underwent further scans (CT and MRI), not just of his brain, but also lung, stomach, pelvis and heart and had to wait until 22nd January for a bed to become available at the neuro-unit at Hull Royal Infirmary.
Meanwhile Alan had met with a neurosurgeon to discuss the options of how to deal with “Tommy”, the significant uninvited guest in his brain. He told Alan that, due to its size and proximity to the cortex and a major blood vessel, the lesion could be a type 4 glioblastoma multiforme (GBM4) – the most aggressive type of brain tumour. One option would be to perform just a biopsy via his nasal passage, or to undertake a craniotomy to remove as much of the tumour as possible, either under general anaesthetic or wide-awake.
Alan didn’t want to undergo multiple procedures so he quickly dismissed the idea of just having a biopsy at this stage. When the surgeon explained that a wide-awake craniotomy would give him the best opportunity to radically debulk the tumour, whilst avoiding as best he could any permanent damage to his brain, Alan decided that this was the best way forward.
On 3rd February, the day of his surgery, Alan had all his hair shaved off (it was his choice not to just have the area they needed shaved). Certain areas of his head were anaesthetised using injections of Lanacane (the same local anaesthetic that is used by dentists). His head was then fitted into a clamp to ensure that there was absolutely no movement during the procedure. It was essential to avoid even the minutest of margins for error.
Alan remembered asking the surgeon: “You have done this before?” and him replying: “Yes, but not this week, although it is only Monday!” And then battle commenced – as Alan recalled.
There was a clinical psychologist in the theatre to take charge of the conversational part of the process. Alan didn’t feel any pain, but the sensations of having surgeons poking and prodding about in his brain was, to say the least, extremely weird.
The first step was to make an incision some six to seven inches from Alan’s lower earlobe travelling north to the top of his head. Conversation was flowing as both the psychologist and surgeons made sure he was put at ease.
Next, a drill bit made four holes in his skull, which was apparently a little bit disconcerting, but nothing to make him jump from the bed. The next part of the operation was the most disturbing as a saw was used to open up a window of entry between each of the holes. The dull “click” when the 4” x 2” piece of skull came away was a sound he never forgot. From behind his head, Alan heard a voice say: “We are in.”
There was then about five minutes rest before the surgeons got ready to “rock and roll”. Alan remembered hearing very clear and precise instructions being given to all those present. At one point, a surgeon said “we are testing speech, please”. Alan was prepared for the fact that he might go into a seizure if a vital part of his brain was stimulated and fully expected this to happen at some point.
The psychologist began her exercise and the first stimulation did indeed produce a seizure. Alan was unable to speak and one of his lips went all droopy. After a break, Alan’s speech returned and he composed himself and let the surgeons know he was ready to carry on. He was on a roll now and fortunately had no further disruptions from the stimulation. Alan could hear the two surgeons behind him plotting numbers and using the traditional surgical method using hand-eye coordination, whilst also identifying the tumour via a state-of-the-art, GPS-like imaging system. It was very reassuring to Alan to be in the hands of such clever and knowledgeable professionals.
Having completed the speech stimulation, the next process was to check the effect of stimulation on movement. Alan was asked to move his toes, then his left leg, followed by his right leg. Then he had to blow out his cheeks, shrug his shoulders, and so it went on. All went fine. Then he had to go through the whole movement checking process again right from the beginning. All the while, the surgeons were continuing behind him to plot the geography for removing the tumour.
Alan was given another short break and then it was back to the process of checking his speech twice more. Then back to movement which was then repeated again. In total, he went through the processes of having his speech and movement checked six times before he heard a voice say: “OK Alan, it’s over. All we have to do now is take out the tumour!” “All?l!” he replied.
There was a distinctly unpleasant smell when the neurosurgeon started to use a laser to remove as much of the tumour as he dared, yet Alan felt a sense of victory, thinking that it was, at the very least, helping to obliterate Tommy the tumour.
Twenty minutes passed as Alan watched Tommy’s intricate removal on an ultra sound screen at the side of his bed. Alan said that watching the white golf-ball shape reducing into a dark chasm was indeed very satisfying.
Then a voice said: “Ok Alan, we have taken out all that we safely can. Everything has gone fine – all we need to do now is put you back together.”
Alan was absolutely exhausted, but they had warned him he would be. Six and half hours after the surgery began, he was bandaged up and resting in the High Dependency Unit. Nothing to it really!
Thankfully Alan recovered quickly from his ordeal, spending just one night in HDU rather than the scheduled five. He was back on his original ward less than 24 hours after leaving it to go into theatre, for which he was very thankful. Alan didn’t appreciate being in HDU – it was full of poorly people and he wasn’t a fan of having his own special nurse who kept on waking him up by shining a light in his eyes every 15 minutes.
The surgeon came to reassure him that the operation had gone well and confirmed that a large amount of the tumour had been removed. It would be analysed to confirm the tumour type and grad, with results through in seven to 10 days.
A couple of days after surgery, Alan awoke in terrible pain. It felt like someone had sawn through his neck, but once the neurosurgeon had been to see him and changed all the drugs he soon felt better and by 10am was sat up in bed eating a full English!
Four days after the procedure, on Sunday 4th February, Alan was discharged home with an appointment to visit outpatients on Tuesday 11th February to have 45 staples removed from his head.
Alan had only been home, for five days when one evening he started to feel really bad. His knees were knocking too. He took his steroids and went to bed. The next morning, Sarah went off to work knowing Alan wasn’t well so, as a precaution, she asked their post lady to call in to check on Alan. She duly arrived and knocked, but getting no answer, immediately rang me. The next thing Alan knew was waking up back in Scunthorpe General where he had been taken by ambulance. He felt so ill and told us that it was definitely the worst he had felt in his life, but that was nothing compared with what came next – the pain of a lumbar puncture. The vials of spinal fluid taken determined that Alan had viral meningitis.
Alan was in hospital a couple of days before he managed to persuade the doctors that if all he was going to do was lie in bed, he could just as well do that at home.
A week after having the staples out, Alan was back for his results and it was confirmed that the tumour was a GBM4, the most aggressive and fast-growing type. Although he had prepared himself for the confirmation, he had prayed for some little twist or turn that might have changed things. Alas it was not to be. And as for his life expectancy – that was 12 to 18 months, but at least it was double his original prognosis.
From that point on Alan had to give up his driving licence – he wasn’t allowed to drive again.
In early March, Alan was measured for a mask ahead of having 32 fractions of radiotherapy. Each morning he had to take his chemotherapy drugs at home before the ambulance came to pick him up and take him to the Queen’s Centre for Oncology & Haematology in Cottingham, where at 10.15 am he had radiotherapy every day, Monday to Friday. He took the chemo every day including weekends.
Alan had seven weeks altogether of radiotherapy – and then he was radio gaga! He then had three months off, which he said was bliss, before starting over again, but this time just on the chemo.
One day in September, Alan was at one of his regular visits to the hospice as a day patient, when he experienced severe pains in his chest. It was subsequently discovered he had a pulmonary embolism which was most likely down to a mixture of the steroids and chemotherapy. Alan was admitted directly from the hospice to hospital and, fortuitously, was seen by a doctor he was already familiar with and who more importantly was familiar with him. He sent Alan for another scan and found the minutest thing on his lung. He then had to self-inject at home with fragmin (an anti-coagulant medication).
Meanwhile, the chemotherapy kept knocking out Alan’s white platelets and he had to have two blood transfusions. He was supposed to increase the dosage from 200mg to 400mg, but that never happened because of the persistent low blood count and loss of white platelets. The chemotherapy finished in December 2014.
In March 2015 it was found that Alan had developed diabetes as a result of the steroids he had to take to control swelling in his brain. He changed his diet completely and kept a close eye on his blood sugar levels.
Alan was taking medication for diabetes, as well as steroids and anti-seizure tablets. He was on scans every three months and thankfully remained stable for quite a while. He used to get very tired and if he took the dog out for a walk he had to go out on his mobility scooter.
He loved gardening and was very proud of his garden, but the energy needed to work in it used to completely wipe him out. If Alan mowed the lawn it would him five days as he had to keep stopping to rest.
Sarah and Alan managed to get away quite often, particularly to the Lake District or Northumberland to enjoy the scenery, taking their dog, Duke, with them, although Alan used to say he was happy wherever he was.
Alan’s last trip was to Northumberland in early 2017. It was after that he discovered that the tumour had reoccurred and that he needed a further craniotomy. During the surgery Alan suffered a stroke which affected his left side.
I had earlier been diagnosed with prostate cancer and was undergoing treatment, but still managed to visit Alan regularly to try and keep his spirits up. It all came about after a fall in Doncaster for no apparent reason (I had, in fact been falling over for a long time). The GP sent me to the Doncaster Royal and I had a CT scan, followed by an MRI because they saw something very unusual. I was admitted straight away to the Royal Hallamshire in Sheffield where the tumour was removed successfully.
In July Alan developed sepsis and needed 24 hour care in Castlethorpe nursing home in Brig. Alan wasn’t very happy, but he didn’t have much choice. By this stage he had ballooned to around 20 stone because of the steroids and he was too heavy for Sarah to manage on her own. Not being able to get out either with Duke or into his garden was too much for Alan and the fight went out of him. He was very ill and had lost coherence and memory. We were constantly thinking we were about to lose him.
It was really hard to see Alan like this – he had always been such an entertaining person, lighting up a room just by walking into it.
On his 65th birthday in November, band players travelled more than 60 miles just to spend half an hour at Alan’s bedside – this was an example of how much Alan meant to them. The same thing happened again at Christmas with band members gathering to play carols outside his window.
During his last two weeks, Alan’s sons, Sarah and I spent long hours sitting with him all day every day. It was very hard watching him in pain and suffering. Typical Alan chose to go at 3am on 2nd January 2018 when no one was there with him apart from his carer!
Alan was buried in his dicky bow and the suit that he used to wear when conducting. He had left meticulous details for his cremation and funeral which inevitably included a brass band playing arrangements that Alan had put together himself. It was a very emotional day.
There was no rhyme or reason for Alan getting this random tumour and no genetic connection, although completely coincidentally I was diagnosed with a pituitary brain tumour and operated on almost exactly a year before Alan was diagnosed with his GBM4 brain tumour. He always had to go one better than me! Alan came over every day when I needed him so I figured the least I could do was reciprocate when Alan was diagnosed with a brain tumour himself.
Alan was shocked to discover how little funding there was into brain tumour research and dedicated himself to making his own contribution while he was still able to. Now, along with Alan’s sons, Darren and Andrew, I am determined to continue Alan’s legacy and raise awareness of and funds for research into this devastating disease.
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.
Together we will find a cure.
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