Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Alan was born and bred in Doncaster and worked for the civil service for over 30 years. He is very proud of his two sons, Darren and Andrew, and his three grand-daughters. Never having been a drinker or a smoker, Alan has enjoyed making music most of his life. He learnt to play the euphonium as a very young boy and has played in numerous brass bands within South Yorkshire and Lincolnshire since the age of eight, as well as becoming a musical director and conductor. Alan met his partner, Sarah, and moved to Scunthorpe in 2013, a year before he was diagnosed with a GBM4 and given just months to live.
“I had a CT scan and could see for myself there was a big white lump in my brain. I got my piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.”
It was very frustrating when doctors started talking about me as if I wasn’t there. I got a piece of paper and wrote out: “I might not be able to speak, but I can hear you.”
I had a CT scan and could see for myself there was a big white lump in my brain. I got my piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.”
Meanwhile my brother Ray, my eldest lad and Sarah had all turned up. I still couldn’t speak, but I wrote that I had seen the scan.
Over the course of the day they kept giving me steroids and my speech came back partially (although it took two to three days to come back properly). I couldn’t use one arm either.
It wasn’t until 4pm that three doctors came to tell me what I already knew – that I hadn’t had a stroke. I said I knew I had a tumour on the brain, but they insisted on calling it a lesion. I felt quite patronised actually and told them I wasn’t stupid. Another doctor came and they all went out into the corridor to talk about me. They put me in a four-bed cancer ward where patients kept being admitted during the night and then dying.
On Sunday I was told I needed to see a neuro-surgeon as soon as possible and that I couldn’t go home in my condition. I underwent further scans (CT and MRI), not just of my 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 I had met with a neurosurgeon to discuss the options of how to deal with “Tommy”, the significant uninvited guest in my brain. He told me that, due to its size and proximity to the cortex and a major blood vessel, the lesion could be a type 4 glioblastoma multiforme – the most aggressive type of brain tumour. One option would be to perform just a biopsy via my nasal passage, or to undertake a craniotomy to remove as much of the tumour as possible either under general anaesthetic or wide-awake.
I didn’t want to undergo multiple procedures so I 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 my brain, I decided that this was the best way forward.
On 3rd February, the day of my wide-awake surgery, I had all my hair shaved off (it was my choice not to just have the area they needed shaved). Certain areas of my head were anaesthetised using injections of Lanacane (the same local anaesthetic that is used by dentists). My head was then fitted into a clamp to ensure that there was absolutely no movement during the procedure. Remember, we are talking about avoiding even the minutest of margins for error.
I remember 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.
There was a clinical psychologist in the theatre to take charge of the conversational part of the process. I didn’t feel any pain, but the sensations of having surgeons poking and prodding about in my brain was, to say the least, extremely weird.
The first step was to make an incision some six to seven inches from my lower earlobe travelling north to the top of my head. Conversation was flowing as both the psychologist and surgeons made sure I was put at ease.
Next, a drill bit made four holes in my skull, which was a little bit disconcerting, but nothing to make me jump from the bed. The next part of the operation was the most disturbing part 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 I will never forget. From behind my head, I heard a voice say: “We are in.”
We all had about five minutes rest before getting ready to “rock and roll”. I remember hearing very clear and precise instructions being given to all those present. At one point, the surgeon said “we are testing speech, please”. I was prepared for the fact that I might go into a seizure if a vital part of my 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. I was unable to speak and my lip went all droopy. After a break, my speech returned and I composed myself and let the surgeons know I was ready to carry on. I was on a roll now and fortunately had no further disruptions from the stimulation. I could hear the two surgeons behind me 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 indeed reassuring to be in the hands of such clever and knowledgeable guys.
Having completed the speech stimulation, the next process was to check the effect of stimulation on movement. I was asked to move my toes, then my left leg, followed by my right leg, I had to blow out my cheeks, shrug my shoulders and so it went on. All went fine. Then I had to go through the whole movement checking process again right from the beginning. All the while, the surgeons were continuing behind me to plot the geography for removing the tumour.
I was given another short break and then it was back to the process of checking my speech twice more. Then back to movement which was then repeated again. In total I went through the processes of checking my speech and movement six times before I heard a voice say: “Ok Alan, it’s over. All we have to do now is take out the tumour!” “Only”, I replied!
There was a distinctive, unpleasant smell when the neurosurgeon started to use a laser to remove as much of the tumour as he dared, yet I felt a sense of victory, thinking that it was, at the very least, helping to obliterate Tommy the tumour.
20 minutes passed as I watched Tommy’s intricate removal on an ultra sound screen at the side of my bed. 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.”
I was absolutely exhausted, but they had warned me I would be, so no worries there. Six and half hours after the surgery began, I was bandaged up and resting in the High Dependency Unit. Nothing to it really!
Thankfully I recovered quickly from my ordeal, spending just one night in HDU rather than the scheduled five. I was back on my original ward less than 24 hours after leaving it to go into theatre, for which I was very thankful. I didn’t appreciate being in HDU – it was full of poorly people and I wasn’t a fan of having my own special nurse who kept on waking me up by shining a light in my eyes every 15 minutes.
The surgeon came to reassure me that the operation had gone well and confirmed that a large amount of the tumour had been removed. It would now be analysed to confirm the tumour type and grade. Results would be through in seven to 10 days.
A couple of days after surgery, I awoke in terrible pain. It felt like someone had sawn through my neck, but once the neurosurgeon had been to see me and changed all my drugs I soon felt better and by 10am I was sat up in bed eating a full English!
Four days after the procedure, on Sunday 4th February, I was discharged home with an appointment to visit outpatients on Tuesday 11th February to have 45 staples removed from my head.
I had only been home, however, for five days when one evening I started to feel really bad. My knees were knocking too. I took my steroids and went to bed. The next morning, Sarah went off to work knowing I wasn’t well so as a precaution she asked our post lady to call in to check on me. She duly arrived and knocked, but getting no answer, immediately rang my brother. The next thing I knew I was waking up back in Scunthorpe General where I had been taken by ambulance. I felt so ill – definitely the worst I have felt in my life, but that was nothing compared with what came next – the pain of a lumbar puncture. The vials of spinal fluid taken determined that I had viral meningitis.
I was in hospital a couple of days before I managed to persuade the doctors that if all I was going to do was lie in bed, I could just as well do that at home.
A week after having the staples out I was back for my results and it was confirmed that the tumour was a GBM4, the most aggressive and fast-growing type. Although I had prepared myself for the confirmation, I had prayed for some little twist or turn that might have changed things. Alas it was not to be. And as for my life expectancy – that was 12 to 18 months. Ouch!! Oh, well at least it was double my original prognosis.
From that point on I had to give up my driving licence – I haven’t been allowed to drive since.
In early March, I was measured for a mask ahead of having 32 fractions of radiotherapy. Each morning I had to take my chemotherapy drugs at home before the ambulance came to pick me up and take me to the Queen’s Centre for Oncology & Haematology in Cottingham, where at 10.15 am I had radiotherapy every day, Monday to Friday. The chemo I took every day including weekends.
I had seven weeks all together of radiotherapy – and then I was radio gaga! I then had three months off which was bliss, before starting over again, but this time just on the chemo.
One day in September I was at one of my regular visits to the hospice as a day patient, when I experienced severe pains in my chest. It was subsequently discovered I had a pulmonary embolism which was most likely down to a mixture of the steroids and chemotherapy. I was admitted directly from the hospice to hospital and, fortuitously, was seen by a doctor I was familiar with and more importantly who was familiar with me. He sent me for another scan and found the minutest thing on my lung. I had to self-inject at home with fragmin, which I only stopped last month.
Meanwhile, the chemotherapy kept knocking out my white platelets and I had to have two blood transfusions. I 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. My last chemotherapy was on 16th December 2014.
Since that time, I have had no more cancer treatment or surgery, although in March 2015 it was found that I had developed diabetes as a result of the steroids I have to take to control swelling in my brain. I have changed my diet completely since then and now keep a close eye on my blood sugar levels.
I take medication for diabetes, as well as steroids and anti-seizure tablets. I have scans every three months and thankfully I am stable. I get very tired and if I want to take the dog out for a walk I have to go out on my mobility scooter.
Sarah and I get away quite often, particularly to the Lake District or Northumberland – we like taking our dog, Duke, with us, and enjoying the scenery, but quite honestly, I am happy wherever I am.
I love gardening and am very proud of my garden, but the energy needed to work in it completely wipes me out. If I mow the lawn it takes me five days as I have to keep stopping to rest. On top of this I can’t sleep at night – so it’s fantastic entertainment just now with the Olympics going on in Rio. I can watch Team GB winning lots of medals all through the night!
There is no rhyme or reason for me getting this random tumour and no genetic connection. I was shocked to discover how little funding there is into brain tumour research so I am trying to make my own contribution while I am still able to.