Patrick E - Diagnosed in 2006
"We've got the test results back and it's a grade 3 anaplastic astrocytoma". These are almost certainly the most important words anyone has ever said to me. But at the time they meant as much to me as they probably do to you reading this now. No-one in the medical profession has ever said the words "you've got Cancer" or "you've got a Brain Tumour" to me. Maybe that's NHS policy, I don't know, but it all means the same thing. Your life is going to massively change from here on in.
In October 2006 I was just getting settled in my new house in Headingley with my new housemates, when I started getting headaches. Not morning-after-Tequila type headaches, I'm not sure you can believe this, but they were much worse. The Student Medical Practice told me it was nothing serious and to go away and buy some ibuprofen. Thanks. Having double vision, severe headaches, barely being able to walk in a straight line is not 'nothing serious' at all, anyone who knew me around that time knew that wasn't the case.
Getting cancer at any time is far from ideal, to say the least. But given the choice I'd have taken it later in life rather than at the age of twenty. I had to miss a year of uni, spend twelve months undergoing Chemotherapy, lose massive patches of hair, put on loads of weight (due to steroids) and generally do very little for a year.
Not only that, but I found there is a gaping hole in the supposed safety net that is the benefit system, that I'm sure I wasn't the first to almost fall through. When on temporary leave from uni you're no longer able to claim your student loan because you're not physically attending. Which is fair enough really. Until you find out that for the first six months of being ill you're not allowed to claim benefits either, even if, as in my case, they agree you're not well enough to work. This is because you're classed as 'attending' uni, even though this isn't physically the case. Why the Department of Work and Pensions (DWP) has a different definition of attending to the rest of the world I'll never know. Even the head of the tribunal I went to said that the situation was ridiculous, but in law there was nothing she could do about it. Not one person I spoke to at the DWP could see the logic in the situation, but none of them could do anything about it. To be able to claim benefits you need to either abandon your course or wait six months to claim benefits. The first one I just didn't see as an option, so I went with the second one. Even then I really struggled. Ringing up every day hassling them as they claimed they hadn't received documents which I had receipts from them for. Eventually they just sent me a cheque for £1400. No letter with it, just a cheque. I'm sure that cheque would never have arrived if I hadn't kept hassling them. Luckily for me I had my parents to fall back on. I moved back in with them and lived rent free and was fine. But how are students who don't have that option to fall back on meant to cope? I'm sure I can't be the first one to find this hole in the system. If you don't have parents to take you in are you just supposed to abandon your course and hope for the best? Or just live on the streets?
Having said that the Disabled Students' Allowance, paid by your local education authority, was much more supportive. I now have a shiny new laptop, printer, laptop stand (?) and an allowance for ink and paper amongst other things. There's also other benefits. As I had my driving licence revoked after my operation I get a free bus pass which covers the whole of the country until 2013. Every cloud...
The most incredible thing that happened to me though, ("more incredible than a bus pass?!" I hear you cry) was when the football team I support, Aston Villa, found out that I couldn't make it to games because of my weak Immune System caused by the chemotherapy. Their response was not a get well soon message or anything like that. General Charles Krulak, former head of the US Marine Corps, currently working as an unpaid director at the club rang me up at home to see how I was and if there was anything he could do for me. I told him the problems I had with being in crowded places and said it would be good to get to at least one game over Christmas, saying I knew the Manchester United and Chelsea games wouldn't be a possibility or the Bolton game the next day, but maybe one of the others. Within ten minutes he had rung me back and offered me a free hospitality box for the rest of the season. Or for the games where all the boxes were sold out, I was put in the players' box with all those not playing. With the size of Villa's squad there was plenty of room. I'll never forget the sight of a former head of the US Marines pushing Jlloyd Samuel out the way asking him "where's Paddy" as if he was a nobody. They asked me to keep all this out of the local press. "We haven't done this for publicity, we've done it because you're one of us". The first time I got there they'd got a shirt signed by the whole team waiting in the box for me. For once in my life I was lost for words.
Don't get the wrong idea though, I would trade all of this instantly to not have had cancer. Unless there's some advancement in medical science in my life time, that tumour's there for life. It doesn't have cancer surrounding the core anymore, but it could come back at any time, it's not a NICE thing to have on your mind (quite literally). I wouldn't like to go through any of it again. Having an operation with a 95% Survival Rate seems pretty high. But when you think about it - and luckily I didn't at the time - that means one in twenty people who have that operation don't wake up. I'm really glad I was so drugged up and so ill at the time they told me this that it didn't really sink in.
Believe it or not quite a lot of humour can come out of having cancer. Some of the responses from my friends were fantastic after I told them I was in hospital with a brain tumour, they really helped keep my spirits up. The best one was probably from my mate who lives in Sweden who replied to my email with simply "Patrick that's terrible... I never knew you had a brain". That was so much better than the messages of sympathy. Don't get me wrong, they were much appreciated too, but you know that people care, you know they don't mean the cruel things they say, they just do it to help you keep feeling as normal as possible. Others included a text which ended "ps. Don't put this too close to your head as that's what probably caused it in the first place" whilst another told me after my operation that Richard Hammond's agent had been on the phone and that brain operations were all the rage now and he'd like to sign me up. Then finally, after I'd had a clear scan, one which said "This is the worst news I've had all week" and another which said "This just proves you were faking it all along". Not sure this works with everyone though, so don't go taking this approach if an elderly relative is in hospital.
I was determined to make the most of the opportunity to make people feel awkward. Nothing cuts someone down quicker than giving the answer "it's because I've got cancer". Unless it's the bouncers in Skyrack who thought I might be lying about that being why I was wearing a hat and made me take it off to prove it. Or a girl in the Terrace Bar on my 21st birthday who tried to steal the bowler hat I was wearing which I managed to hold onto my head as she made a grab for it. "Ah go on let me wear it". "I'm wearing it because I have cancer". The look on her face was brilliant apparently.
I think an apology is also in order to the members of the Christian Union who came to ask me if they could talk to me about God one day when I was having my lunch in Game On. We talked for a while and then at the end they asked if I had any questions. I felt this was too good an opportunity to pass up, so I asked them "if God loves everyone why have I got cancer?". Silence. Colour drains from their faces. I guess they'd not been asked this one before. After a long pause the first one gave an answer I have quite a lot of respect for looking back on it. She said "I don't know". The other one however said "God has many different ways of showing his love". I'm sorry? What? It's a very bizarre way to show love if you ask me. Dear Patrick, here, have cancer, love from God. I don't know what response I was expecting really and I accept it was a cruel question to ask. But that's still a shocking answer.
Two main factors related to the illness and treatment affected my life at uni. The first of these would be the way it affected my memory. My memory from before the illness is fine, but my short term memory is a shadow of its former self, though improving slowly. One example of when it let me down is when I was in the library and spotted a book called "Strategies to improve your short term memory". So I picked it up, went off to do my work in the cluster, left the library... and then realised I'd forgotten to take it out. This short term memory problem means that new things don't go into the long term memory very easily as they've got to go through the short term memory to get there. Most of the time this just provides amusement for my friends and annoyance for me, when I actually remember that I've forgotten something that is. But when it comes to exam time this becomes far more serious. My department have been very helpful in general, they granted me extra time in exams too, but they refused to adjust my marks as they didn't feel that my memory had inhibited me in my exams. This despite the fact that most of my exam results were around ten marks lower than my coursework ones. Surely there's nothing more important in exams than your memory? They justified this by saying that I'd actually done better than in first year anyway. Well surely nobody does better in first year than second year do they? The marks count in second year, so you actually put some effort in. It's like I'm being penalised for not putting enough effort in in first year when I put just as much in as anyone else who thought their marks don't count for anything so long as they're above 40. But they're not going to get penalised for it as they didn't get ill, which apparently then brings them into play.
The second of these would be the effects chemo had on me. The NHS almost didn't fund my chemotherapy as it was 'only' a grade 3 tumour (on a scale of 1 to 4, with 4 being the worst) and I almost had to make do with stopping after Radiotherapy. But as they took such a small biopsy they couldn't be sure it was not grade 4, so they agreed to fund it, but only because I'm young so I'm told. It seems weird to have to fight to put a poison through your body that does so many horrible things to you. As a lazy student I enjoy my lie-ins as much as the next man. But during my twelve months of chemo I could sleep twelve hours a night, sometimes more. Then there was the weakened immune system mentioned above. Nights out for me were limited to the odd night at a fairly empty pub. Not that I could drink spirits anyway. This made me realise how much we as students spend on alcohol, suddenly the student loan went so much further.
It's been tough, but I wouldn't describe it as a battle. There's really very little you can do other than sit back and wait for these incredible treatments to do their job. I've not been brave, I hate the word brave. Someone who throws them self in front of a bus to save someone else is brave. People say I've coped with it well, better than they would have done. But do you ever hear a cancer patient described as coping with it badly? I never have. As Jenni Murray said, in the best description I've read of how I feel about this whole thing. "You're not being brave, you're just coping with the unavoidable in the best way you can". That sums it up perfectly for me.