Hi my name's Will Masek, I'm a 21-year-old student living and studying in Bristol. I'm half-way through my final year at West of England University studying Games Technology. The purpose of this blog is really for me get my head around the diagnosis I've been given, keep a bit of a record of exactly what's happened and really just try and bust a lot of the medical jargon that gets thrown at me. I'm hoping maybe this'l be helpful to some of my friends and family who want to know what's going on and maybe even in the future anybody else who suffers from ALL.
For the last 7 weeks or so I've noticed lumps all over my head and a couple on my neck as well, as well as having attacks of pain and numbness in certain regions of my face. Needless to say I thought this was pretty weird so I didn't hesitate to sign up for a GP here in Bristol and go and see them, they were pretty confused. First thing they did was put me on some antibiotics for a week and take several blood tests.
A week later none of the symptoms had subsided, the blood tests had come back to say that I had a slightly raised white blood cell count but apart from that nothing to worry about. Relieved but still confused I was referred to a specialist at a Hospital in Bristol for later on in the next week.
That weekend I happened to go back to my parents house just to visit and I had another attack of numbness and pain so my parents took me in to the hospital there, this lead to another physical examination looking for swollen glands, some inconclusive blood tests and another weeks course of antibiotics. I also saw my GP back home, he was the only one fairly convinced that the lumps were serbaceous cysts and may need surgical removal, still I had my appointment with the specialist to come so I was hoping he could shed more light on it.
Seeing the specialist was also fairly inconclusive so he decided to get me booked in for an MRI scan in order to try and shed more light on the matter. An MRI scan is pretty straight forward, it just means lying still while a MASSIVE magnet goes round you collecting images of your body making some of the weirdest sounds you've ever heard. So a week later I was at the hospital lying inside the MRI machine for the best part of an hour and hoping something would show up on that... unfortunatly the only actual feedback it gave me was that I had water behind my right ear drum, which would explain why my hearings been pretty crap in that ear. But STILL nothing really concrete about my symptoms.
My specialist decided to refer to a surgeon who would perform a biopsy. A biopsy's basically just cutting a bit off and then running tests on it to find what it is. So I was admitted to this day surgery and they decided to cut off the larger lump on my neck and a small one off the top of my head. I was put under a general anaesthetic (so totally knocked out, not a bad thing) and they did the deed. They also put a camera down my throat which is still a bit of a mystery to me to be honest, but afterwards it did cause me to cough up a lot of blood clots. Anyway the procedure was fine, they patched me up and although I was still coughing up a bit of blood and my nose was still bleeding a bit, I went home.
It wasn't until later that evening that my neck really started to ache and I noticed that the bleeding still hadn't really stopped. I tried to get some sleep but by 6AM my girlfriend and I decided that it was time to head to Frenchay Hospital. At this point things get a little hazy because I was pretty tired. I wasn't at the hospital long before I was on a bed waiting to be seen by a Doctor, they took a blood sample and redressed the wound on my neck (the one on my head was fine) and wiped away a lot of the blood. They then transferred me to Southmead Hospital ENT department by ambulance since I was still feeling pretty rough.
At Southmead a Surgeon saw me straight away and changed my dressing again to check the wound, make a few other little checks and cleared some of the blood from nose. The Surgeon got a second opinion to decided whether or not to drain the wound as it was really swollen, but he decided this wasn't necessary but he told me that the hospital's Haemotologist had found some abnormalaties in my blood so she wanted to have a word with me.
This was a conversation I'm not likely to forget. She was a really nice Doctor and basically explained that from the abnormalities in my blood it was looking pretty likely that it could be a form of Leukaemia. She asked me about a few other possible symptoms like rashes, night sweats, fatigue, lumps on the glands in my armpits and groin and it was then we realised that I had pretty much all of those symptoms. This was more than a bit of a shock but to be honest part of me almost dismissed it, in an assumption that.. well... it could never happen to me.
So with this I had another dressing put on, this time a pressure dressing to try and stop the bleeding, though it was pretty restrictive on my neck, and was bundled in to another ambulance and taken to the BRI. Having been given a room, my girlfriend and I really were just waiting.
Being so tired I went to get some sleep and my girlfriend went back to my house to get some stuff that I'd need for my stay. It was during this time a group of Doctor's came in to see me and gave me a more in-depth diagnosis from the blood tests that I'd been having. So I was diagnosed with T-ALL. Acute Lymphoblastic Leukemia of the T cells... hard to say how I felt really... I should have taken it more onboard when it was first mentioned in all honesty, I was pretty crushed. First thing I thought really was I just didn't know how I was going to tell anybody, least of all my parents.
In the end after a lot of talking and a lot of balling my eyes out my Doctor phoned my parents and let them know and they headed for the Hospital. It was so much information to take in and I was so tired after racing around all the different hospitals, there wasn't a lot I could say or do. My neck was still very swollen and painful, I couldn't breathe through my nose or stop it from bleeding and the shock of it was still settling on me really. I managed to phone my best mate and have a chat to him about it, that cheered me up a bit.
That night, I had a load more blood tests and some bone marrow tests. To get the bone marrow they had to put some general anaesthetic in to my pelvis and then put a pretty big needle in to to extract it. They say its pretty much the worst test of the lot, to be honest I couldn't feel the needle going in but you can definitetly feel the bone marrow getting sucked out and you can definitely feel them remove the needle at the end of the procedure. Still, it wasn't THAT bad, to be honest I'd been expecting a lot worse.
The rest of the night was really just made up of me thinking about how I was going to change my lifestyle entirely. When something like this lands on you it suddenly has to become your biggest priority and everything else has to be worked around it, it really hits home how big a responsibility it is. The NHS team of doctors and nursing staff that have helped me have been brilliant though, they've answered all my questions and though by this point they'd given me a shit load of information I couldn't really process yet they really helped put my mind at east.
So that was how I got here really, it feels like ages ago now but it was only a couple of days, a lot seems to have happened since then, I'll try and get some more down in another update soon.
