Lym-Whatnow?

I don't remember the date of my first trip to hospital, some time in early May.  It was probably a week or two after my first GP appointment, but I remember it felt relatively non-urgent (to me anyway) and I wasn't really worried...  Why would I be? Of course I knew that young people get ill but, just like everyone else, I assumed I wouldn't be one of them.  As far as I can remember, I was just excited to get another afternoon off school.

It was weird because not many of my friends knew where I was going or why, but I don't actually remember them asking much.  We all had GCSEs to worry about and people go to the doctor all the time.  Actually, I didn't, when I was younger... These days I may as well live there, but I think most of my friends, if they questioned it at all, would assume it was something pretty normal and non-serious.  Maybe I told them it was to do with my fatigue or the nerve problem I'd had with my leg for the last year. I only remember telling one or two people that there was potentially a cancerous tumour chilling on my collar bone, but I think that was a few weeks later anyway.  Honestly, why would they be concerned though?  Why would it be anything serious?  I was so skinny, had the diet of a young rabbit and barely missed a day of school in the eleven years I attended.

Mum picked me up from school a couple of hours early, I have a feeling it was a Monday but I could be wrong.  There is something ridiculously blissful about driving away from a quiet school, knowing that everyone else is in a lesson, knowing that you should be in a lesson, and in reality you're in a warm car with your shoes off and the radio on.

The hospital was about 30 minutes away.  We parked in the carpark by The Old Building of the hospital, which I don't actually think exists anymore.  I'm pretty sure they built over it, which is weird because for ages it was just where we parked every time we went and then suddenly we couldn't park there because it was a construction site.  From there we had to trek through most of the hospital to get to the appropriate department, which was a challenge because hospitals are built like mazes and we were heading to the complete opposite side of the building.  Thinking about it now, I don't know why we always parked there, but maybe there isn't a convenient way to get to the children's department.

The children's ward at Musgrove Park Hospital is split into two sections: the Oak Ward and the Acorn Ward.  I remember thinking it was cute they were named them like that; the Acorn Ward was for babies, prompting my mum to tell me a story about when she was there with my sister when she had pneumonia as a toddler and The Oak Ward was for the older children...  I became pretty familiar with that one.  We had to buzz to get in, because you know, kids and stuff, you don't want just anybody wandering around there.  Sometimes I got stuck out there and had to buzz to get back in.  The nurses probably got pretty annoyed, but by the time I actually had to stay there, I was the sickest kid on the ward (also the most ill), and you can't be mad at the one that's almost dead.  The wards were decorated with pictures of animals and kids stuff and honestly, I felt a little too old to be there as we walked past the younger children.  We passed the intensive care unit within the department, I didn't even notice it at the time, but a few months later I'd be back there with a nurse checking on me every hour, making sure I didn't die.  Weird, right?

We reached the desk and the nurse explained that the doctor was busy, but she was lovely and she'd be here soon, so we were taken into a room to wait.  I think it was a small ward, there were a few beds, but it was pretty much empty as far as I can remember.  Maybe there was a nurse in there and I think there was one other patient behind a curtain but, let's face it, I've always been somewhat self-involved and probably didn't pay them much attention.  I sat there in my pleated black skirt, black tights, half-broken ballet pumps and a navy sweater and we waited.  Mum probably pointed out that I needed new shoes because mine were falling apart and flat shoes aren't good for your feet anyway, and I probably responded with something sarcastic and pointed out that I was leaving school in a month and I'd never have to wear them again anyway.  She was probably talking about babies too, there were lots of babies and she likes babies.  I don't like babies, I was probably just rolling my eyes... Teenagers, eh?  I was in a pretty good mood though, most of my friends now only know me as the pessimistic mess that I am, but before I was somewhat more fun to be around.  Not a lot, I've always had a dangerously dark sense of humour and a pessimistic streak, but I was definitely a lot more positive than I am now... Life altering illnesses will do that to you.

I don't remember if we waited for very long that day, waiting in hospitals very quickly became a special skill but I don't think it ever bothered me that much anyway.  The way I've always thought about it is that I'm waiting, because someone else needs help more than I do and becoming a regular patient only confirmed that for me.  Most doctors aren't just hanging around having a chat and a coffee while you've been waiting 45 minutes for your appointment, and if they are it's most likely because they've been working hard saving lives and they need a break.  Honestly, when people complain about waiting times in hospitals and doctors offices I literally want to punch them in the face... and I'm not actually a violent person, I'm just quite vocally aggressive.  I fully understand that it can be annoying but I wish people would just stop and think before they do.  What some people don't realise is that sometimes you're waiting because a girl just collapsed and lost a lot of blood and she urgently needs this scan before you because otherwise she could die today.  Or that your doctor is late to the appointment because she was busy resuscitating a patient who went from non-critical to urgent in thirty seconds.  I know that, because I've been that patient... but I guess maybe some people complain because they're lucky enough to have never been in that position.

So then a magical human being entered the room; a woman who is genuinely some kind of superhero and though I didn't know it then would go on to save my life, perhaps three or four times.  Not only is she one of the reasons that I'm alive today, but she made every horrible thing I went through over the next few months and years, about seven thousand times easier than it otherwise would have been.  Her name was Louise, and I truly owe her my life.

She had long-ish brown hair, glasses and she usually wore beautiful skirts and shoes.  She was the perfect balance of funny and kind, she laughed at my horrible jokes about dying when my parents couldn't and she took the time to support them and advise them when they were worried.  On top of that she was ridiculously intelligent and understanding with a crazy amount of compassion and empathy.  She was the best doctor to the extend where I remember kind of hoping there was something a little bit wrong with me after we first met, because I just really wanted her to be my doctor.

The first day we met she came armed with a comically small paper file, which today is bigger than your average encyclopaedia.  It contained a few sheets of paper, but nothing remarkable.  Something about how as a child I was a total dumbass and sprayed window cleaner onto the window so closely that it bounced back into my eyes, which then went all red, and caused a family outing to A&E. Another entry explained the details of how I popped my little finger out of its socket when I was turning the bathroom tap off, causing another family outing and complete outrage from my sisters when they had to stop watching Indiana Jones just because the little finger on my left hand could suddenly bend the whole way back to my wrist.  On that occasion, I was playing with it so much on the way to the hospital that I actually managed to push it back in just as we arrived in the hospital carpark... concluding in a totally wasted trip.  It still bends out way more then the little finger on my right hand though, so I'm pretty sure I did it wrong... but whatever, it's a little freaky and I kind of like it.  I think there was also something in there about my feet when I was really young... they were too flat or I was walking weirdly or something, I don't know, they're fine now.  Actually, they're not because chemo and months of bedrest fucked them over, but they were fine then.

She started talking to us, basically addressing most of the things covered in my first GP appointment.  She asked general questions about what had happened, that weird question about whether I'd be hanging around any cats... I don't know if I ever found out why people kept asking me that.  I probably did, but the chances are I wasn't really listening.  I don't care for cats.  Plus, I barely remember actually useful information, let alone why cats might cause raised lymph nodes in teenage girls. She examined me and asked if I'd experienced night sweats, itchy skin, chest pain or difficulty breathing.  No, no, no and no, not that I'd noticed... I think the fatigue issue came up, mum probably brought it up and I imagine she told her that I'd been 'over-doing it' because mums always say that, but at this point I was just concerned because they were weighing me and taking my height and I didn't want anyone to find out I hadn't eaten that day.  Another doctor came in and was like "oh so this is the girl with the mysterious lump" or something along those lines... I'm glad that didn't catch on as a nickname.  I mean, I'm not overly keen on Jemima as a first name, but I won't be trading it in for "the girl with the mysterious lump" anytime soon.

After they both looked at me and asked more questions Louise explained that she wanted to do a couple of tests and that she would send the scans to a wonderful doctor in Bristol who was a specialist in this kind of thing.  She didn't mention at that point that he was an oncologist.  She sent me for an x-ray and said there were a few things it could be and it could be nothing; sometimes lymph nodes just pop up when you're stressed, but I'm pretty sure at this point she already knew it was bad.  She couldn't have guessed exactly how bad it was going to get, no one would've predicted that, but it wasn't a great start.

So, we walked bloody miles through this hospital again.  The children's ward is way over on one side and the x-ray department is a good ten to fifteen minute walk but we didn't have to wait very long, x-rays are pretty speedy.  I just remember the waiting room being full of old people, everyone they pushed past looked minutes from death.  It was a pretty depressing part of the hospital...

My first x-ray was a pretty uneventful but unnecessarily awkward event. I didn't have to take all my clothes off, but I had to take my top and bra off and replace it with a less than flattering gown... that was inconvenient and embarrassing.  Eventually, the months and months of having my body examined and countless scans and accidentally flashing people, would lead to me becoming the shameless individual I am today.  If I had to do the same thing now I wouldn't really care who saw my nipples through a hospital gown - take a look! I have perfect nipples - but that was probably one of the most embarrassing things that had happened to date and even though the nurse was female, I was very self-conscious about the whole event.  You'd think my mind would be mostly focussed on the potentially serious illness I was yet to be diagnosed with, but it just didn't seem like a concern. Everything was so different then, I don't even remember what it's like to be like that... so blissfully unaware of real fear, real pain, real suffering.

They took the x-ray, I put my underwear back on and then we started our long trek back to the children's ward, we waited there a little while longer and the nurses got us some colouring to do at a teeny tiny table, before being taken into a private room where Louise was waiting at a computer.  I was still in a relatively good mood, I made a couple of jokes - as I do - and we sat down, but I knew the atmosphere had changed since the last time we saw her. Her tone had slightly shifted, her voice was still calm and happy but it was serious. She laughed at my jokes, but it was clear it was time to stop making them.  I don't think I did, I made jokes the whole way through my treatment because I'm inappropriate and awkward and I can't deal with serious situations.

She brought up the scan on the computer screen and we all looked at it.  At this point, I freaked the fuck out.  I almost jumped backwards.  Now, I'm no radiographer, which is why I was stressing about entirely the wrong thing... but my back looked bent.  I mean really bent, my spine looked like it had a lay-by.  Evidently, this was entirely the wrong thing to be concerned about and Louise didn't even mention it.  I think I asked and she told me that most people have some kind of curve in their spine and it's completely normal but that didn't stop me obsessing over it for a good few minutes. She directed our attention to an area of my lung, which to be perfectly honest with you, looked like a completely normal lung to me, further demonstrating, that I was not a radiographer.  I remember her explaining that there was supposed to be a gap between my heart and my lung and there wasn't, or that it was much smaller than it should've been, or darker or maybe there wasn't supposed to be a gap at all but there was... I don't remember the details, but there was something going on that caused her concern.  I think she said that usually if the scan shows up like this it's because there's something in the way, that there could be lymph nodes there or something... maybe.  Okay, so clearly I have a very limited idea of what was wrong, science was never a subject of interest at school, but I knew at this point that there was something wrong. My mum looked worried, but I tend not to worry until I know all the details and so far there may or may not have been a shadow or a gap somewhere on an x-ray... That information meant literally nothing to me, so I was still okay.  I wished she'd hurry up and explain it though, the suspense was killing me.  The build up was total jargon anyway... it wasn't the interesting kind of suspense, I was just confused.

Then she said "I don't want you to worry yet but this concerns me, there are a few things it could be but what it's indicating to me is some form of lymphoma".  Mum started crying.  Louise quickly grabbed some tissues and tried to comfort her... and I sat there like a lemon and looked between them utterly confused.  Let's try to remember that I'm fifteen here, I don't know what lymphoma is but I'm pretty sure it's not good at this point.  Based on what was going on I assumed I was supposed to be shocked or scared or upset, but it's hard to feel any of those emotions when you have no real idea what is happening.  Louise, a mum of three daughters just like my mum, was still trying to comfort her and explain what we were going to do, that we don't have to worry yet, that it's going to be okay.  Mum was trying to not cry and listen instead and no one was even really looking at me.  It was like they had completely forgotten I was even there, although I'm pretty sure my mum was acting in this way because I was there and she didn't want me to see her cry.  My mum cries at everything, I literally caught her crying during an emotional scene on Hollyoaks once, so I don't know what she was worried about.

I interrupted with "wait, but what is that? what does that mean?" and Louise paused.  They both looked at me and I waited until she slowly said "it's a type of cancer".

That was the first time it felt real. I felt a hot flush run through my entire body and my throat suddenly felt impossibly dry and I wanted to be silent, but she was looking at me and I couldn't... so I just said "oh... okay." and she carried on talking.