As a joke, it’s not very funny, right? It’s even less funny when it’s real life.
Today marks a momentous day; the end of three months of anxiety, of crossed-fingers and desperate prayers. It marks the end (hopefully) of three years of phone calls from my mum, worried and baffled. It’s the day I finally manage to write out the words which have been petrifying my family for the last 71 days.
My brother has a brain tumour.
The last two and a half months have been the hardest of my life. I’ve found myself stuck; unable to write the words to describe what it’s been like, living through this nightmare. I think I’ve finally found my tongue.
It’s a year since the wedding of my mum and stepdad. I’m living in Edinburgh, having finally just about found my feet after graduating. 22 and happy; there isn’t much in the world which can phase me.
I don’t think much of it when mum tells me Mitch has been ill. He’s 19, he’s spent the entire weekend drinking too much in the sun at V Festival, just down the road from where mum lives. I’ve already seen the pictures on Facebook – my brother and his friends crowding round sloping tents, raising their beer cans like a salute. In hindsight, the fact that he missed seeing Eminem perform because he was throwing his guts up in a tent should have been a warning sign. Maybe the first.
A month later, and it’s mum’s 50th birthday; a celebration which warrants me coming back to Essex, where I meet Amber, my brother’s girlfriend. Mum and Amber regale me with the tale of how they bonded at A&E when they took Mitch to hospital because he wouldn’t stop being sick. No-one is that worried – not yet – because whilst the episodes of sickness are severe, they disappear as fast as they occur. I look at my brother and can’t imagine anything being wrong with him.
There’s something not right with Mitch. It’s something almost impossible to put a name to – almost like the opposite of je ne sais quoi. In so many ways, life is great for him right now; he’s working as a car salesman in a Fiat dealership, he has a wonderful girlfriend and a group of friends who are always coming and going. Looking back to the kid brother who drove me mad at secondary school, it’s amazing to see the man he’s becoming. And yet… There’s something not right with Mitch.
If you ask him, he’ll tell you he’s fine, but there are odd moments where he’s obviously frustrated with what his body is doing. None of us know how to help. We can’t help wondering if the sickness is related to his smoking, or to something less innocent. Hopefully the doctors will be able to work it out.
Maybe things are on the up. This has been an intense summer – my cousin’s wedding in Lake Como, trips to London to visit family and a summer stuffed full of events at Edinburgh festivals – but it’s been positive, too. Mitch had one bout of sickness in June, but now he’s looking good. Maybe the doctors were right when they said that the thing causing Mitch’s bouts of sickness were psychological. Maybe it was stress. Who knows?
Late 2012 – early 2013
How many times can we go through this? How many times can Mum take Mitch to the hospital, because he’s lost at least a stone in weight, because he can’t even keep water down? How long are his work going to be okay with him disappearing home because he barely makes it past breakfast before he knows he’s going to be sick again? And more frustratingly, how many more times are we going to be have to be told that it’s a stomach virus?
If I am certain of one thing, it is that my brother does not have a stomach virus.
It’s not like he was the chunkiest of kids growing up – even at my 21st, he was tall and skinny – all sharp elbows and knobbly knees to match his spiky hair. But this is the first time that I’ve seen him go through one of these vomiting phases, and he looks like a corpse. The skin on his skull is stretched so tight that it looks painful. He’s so pale that his freckles look out of place. I don’t understand how my brother, who last week was driving me to McDonalds and fighting with me over the TV remote can suddenly be this wraith of a person.
It’s starting to feel like a broken record now; mum telling me Mitch is sick, the doctor’s claiming that it’s just a bug, him eventually ending up at A&E where they give him anti-sickness medication and maybe a drip before sending him home. Mum’s awake most of the night when he’s ill – her bedroom is right below Mitch and Amber’s bathroom, so she can hear every time he’s ill. By the time I get back to Essex, he’s getting better again, and we’re still clueless as to why this is happening.
Christmas day is punctuated by a worried phone call from my father, who I stayed with just a few days ago. “What’s wrong with Mitch?” he breathes down the phone, and I look up to see my brother outside in the garden, smoking his electronic cigarette. “Nothing,” I reply, a little shaken by the concern in his tone. “Why?” When he tells me Mitch suddenly became unable to speak whilst on the phone to him, it’s impossible to equate the scary behaviour with the very much laughing and joking boy that’s waving at me from the conservatory. I pass it off as a result of the Christmas eve drinks we’d had the night before, just my little brother getting tongue tied when he’d had enough to talking on the phone. If it was anything, it was just a kind of stutter, right?
May – June 2014
Mitch and Amber have gone on holiday with some of her family. It was supposed to be a nice two weeks in Turkey; not a nice few days and then Mitch being as ill as ever in a foreign country. Mum says that as soon as they got back from the airport, she knew he hadn’t been well. She got halfway to work before getting a call from Amber, really worried about Mitch, who hasn’t eaten or drunk anything in days. They’ve called an ambulance, going to A&E once again. Mum’s saying that they won’t let him leave now until he’s at least stable – apparently that caused Mitch to kick off. Three days in hospital later, and they discharge him. We’re still in the dark.
The moments where Mitch is unable to speak are becoming terrifyingly common.
So many people have said that Mitch must have a stomach ulcer now that I actually believe it, despite the fact that the symptoms don’t really fit. Maybe that’s why, when the date finally rolls around and his endoscopy finds absolutely nothing wrong with his stomach, it’s so hard to swallow. The doctors finally seem to be taking it seriously; there are now tens of emergency reports of Mitch going to A&E, vomiting uncontrollable, and even a family friend who is a nurse suggested an ulcer. But no. The doctor’s say it’s back to the drawing board as though this is some puzzle to be solved, unable to see that this is my brother’s well being that’s balanced on their diagnosis
As if things were not crazy enough in all of our lives right now, this morning Mitch crashed his car; wrote it off. He’s driving Amber to work in the mornings, which meant that after spinning his car on a busy A road at 7.30 this morning, he ended up dazed and talking to the police at the side of the road wearing his dressing gown and slippers. Thankfully, he’s fine, and no one else was hurt – but the Alfa Romeo is headed to the scrap heap, it has really shaken all of us up. Mum got a call when Mitch was at the side of the road, and he sounded really confused – it was probably shock, I guess. I just can’t believe that how lucky he’s been.
Mum’s just called me. Mitch had a grand mal epileptic seizure. He’s in the hospital. They still don’t know what’s wrong with him.
Late August 2014
The only benefit to your brother having had repeated epileptic seizures (in spite of a high dose of anti-convulsion medication) is that things start to move a little bit faster. Mum’s GP has suggested sending Mitch for an MRI, just to rule out any kind of head trauma which might be causing these seizures. The GP is amazing – putting Mum’s mind at rest, finally doing something other than just saying it’s another stomach virus.
I’m at work when I see the Facebook message from my brother, asking me to call mum. I do, and she sounds numb when she tells me that it isn’t good news. The MRI scan which was supposed to rule out head injury has shown an abnormality – a growth, a tumour – in Mitchell’s head. Oh, and her phone has been stolen. I go back to my desk in a daze, unable to process the news. I want to say that it all makes sense – it all falls into place at this point; the seizures and the inability to speak and the vomiting – but it doesn’t. It’s scary and unreal and unfair. 23 year old’s aren’t supposed to get brain tumours. And people with brain tumours are supposed to have headaches, or vision problems, or hallucinations. There is no relief. There is no time to breathe. I work from home all afternoon, and start working out when I can head home.
Work grant me as much compassionate leave as I need, and so when the date is set for the first meeting with Mitchell’s consultant at the Neurosurgery unit, I travel to Essex. The consultant who is handling Mitchell’s case gives us answers that we’ve been craving for years; yes, the sickness is caused by the tumour. The episodes of being unable to speak are a form of seizure. The drugs he’s on should stop any more conic-tonic seizures. His tumour is six centimeters long. It’s eaten it’s way through most of his hippocampus, and if left unchecked, would probably keep on swallowing up the rest of his temporal lobe. It’s likely slow growing, likely benign, likely to have been there for years.
My voice is shaking when I ask him what our options are.
There are four.
We can leave the tumour and see what happens; come back in six months time and see if the tumour has changed.
We can place a shunt into his brain, allowing better flow of fluid around the tumour.
We can have a biopsy taken to try and figure out what kind of tumour it is.
We have the tumour debulked, where they remove as much of it as possible.
It’s pretty clear as we walk out of the room that we all know what Mitch wants. The tumour’s gotta go.
There are a few false starts to get to this point, standing in pre-op where my brother is in a hospital gown, clutching onto his e-cigarette as though it’s a life-raft. The surgery was originally going to take place a few weeks ago, but in between more MRI’s and neuro-psychological tests and trying to get him to put a little bit of weight on, things have slipped. But we’re here now – Mum, Amber and I – waiting for Mitch to go into theatre. Then we’ll wait whilst he’s in theatre. Then we’ll wait until he’s transferred to recovery. His op started at 10am; we finally get to see him again at half 6 in the evening, where he’s bandaged from ear to ear and out of it on painkillers – and yet still managing to drive the nurses mad. It is, undoubtedly, the hardest day of my life.
Mitch stays in hospital for four days; a day for every centimetre of the tumour that they remove from his temporal lobe. They would have taken more, but the final part of the tumour is bound up with his speech centre, and removing it would lead to him living in a world where it’s impossible for him to understand the words people are saying to him. Even so, the trauma he has been through has wrecked a lot of his perception. His short term memory is awful – he can’t remember our names, even when he knows who we are. The occupational therapist is worried when he can’t carry out simple instructions – “Point to the ceiling” – and there’s a combination of pride and fear when he eventually manages to write his own name and address.
We’re left with the intense terror that it might be like this forever. Mitch’s consultant tells us it’s unlikely Mitch will ever drive again. We travel home in an exhausted silence.
We were told, when Mitch was sent home, that things should improve. His regime of drugs would reduce the swelling around his brain, keep the seizures at bay and keep his stomach lining healthy. The rest was a waiting game. After three years of waiting, being told that there was no way of knowing how much better Mitch would get other than time felt like yet another blow.
It’s less than three weeks since Mitch’s surgery. The bandages have been removed, the stitches on his wound are slowly dissolving. More impressively, my brother looks and sounds like my brother. His speech has improved so rapidly that the occupational therapist booked to see Mitch has been cancelled. His memory is almost at the stage it was before his surgery. This consultant has said that his initial statement that Mitch would never drive again is almost certainly wrong. Every single medical professional we see tells us that Mitch is doing amazingly well.
We are still waiting on biopsy results. The consultant has told us that the tumour was not cancerous, but that there were some abnormalities to it. The small part of Mitch’s brain which was removed has now travelled more extensively than my brother himself – it’s been escorted to two London hospitals, an Oxford research centre, a lab in Glasgow and finally a specialist in Paris. No one can be quite sure what it is. We may have to accept that it may never be completely understood.
It’s not really important to us anymore. The wonderful consultant, who we met only three months ago, has told my brother that he should start looking at going on with his life. They’re lowering the dose of his medication. They’ve cleared him to go back to work at some point early next year. He’ll even be able to apply for a new driving license. Life is good.
We never expected the MRI to come back and show that he had a brain tumour. Mitch never once complained of problems with his vision; with headaches. He didn’t present the way I thought that someone who had a brain tumour would do. He had a rare kind of tumour, presenting in an usual fashion. As hard as the last three years have been, we are lucky that it was caught; lucky that his consultant is nationally recognised, lucky that we have the NHS. This post is supposed to just provide a timeline, for others. We never thought it would happen to us; it did. If it helps anyone at all, then it’s a good thing.
(I love you bro. See you at Christmas.)Carley