Fatigue

Yesterday turned out to be a bit tougher than I thought it'd be, any of my friends'l tell you when I get real tired I'm pretty terrible to be around and having not slept for ages and having a cracking headache all day I really was feeling bad. I should have tried harder to get some sleep but for some reason I just sat around watching TV and trying to read this information they'd given me on these ALL clinical trials. The lunch I cooked didn't help, followed the recipe and it wasn't bad but truth be told I ate waaaaay too much, even though I was full I kept eating and that made me feel reaaaally sick, infact I haven't eaten a full meal since yesterday lunch time it was that epic. Hopefully I'll feel alright later on tonight though, my girlfriend and I are going to cook an awesome curry and set off some fireworks, watch some Gavin & Stacey probably as well :)

It can be pretty tough to hear about everybody elses new years plans, especially when I think that I've been getting so tired recently there's a chance I might fall asleep before midnight anyway! Still I look forward to hearing all the stories from other peoples nights and checking the photo's obviously.

So yeah, last night was tough really and I got pretty upset but I to be honest it was 99% just because I was tired really, stuff tends to feel like its piling up when your that tired, I feel pretty good now. Just been down and bought myself a fuck off crate of fireworks! Looking forward to setting those bad boys off later on tonight, and I'm gonna start going through my curry cookbook and see if I can't find us the perfect curry for the evening.

I'm not due in the hospital until 1:30 so I've got a little while yet, looks like I'm due another intrathecal and some ambisone so I'll probably be there til around 4-5pm I'd have thought. Have to make sure they get to the bottom of this phantom nose biopsy I apparently had done as well... thanks private health care...

Back home at last

They discharged me yesterday! Great news, it's good to be back home, though its a big shock to the system having to do all the pills and stuff yourself, still on the steroids and some others to protect me from some of the chemo side-effects. But it is very good to be home.

Didn't have to go in for chemo today either, but I did have to do to the ENT department to get my hearing checked out, been feeling a lot of pressure in my ears. Had the hearing test though and it was fine, well within normal sort of limits so at least its nice to know that all these gigs and that haven't damaged my hearing yet :P Yeah so then they put this camera up my nose... again... gotta love it when they do that... and it looks like that private hospital did a biopsy from the inside of my nose and theres a lot of old blood clotted up there blocking up one of my passages, so that would explain it. The doctor at ENT couldn't be sure though since he didn't have my notes from that private hospital... honestly I just don't see the point in private health care so far... okay fair enough when it gets serious hand it over to the NHS but at least communicate everything you've done properly. So tomorrow I'll get them to phone the private hospital I had the biopsy done and double check EXACTLY what was done and then we can sort it out, still I'm pretty relieved my hearing's not damaged or anything.

Had a few messages from some more of my mates about it all today as well, last few people I hadn't told really, pretty sure everybody who I really want to know knows about it now so thats good. Just really want to get it to a stage where its out in the open and nobody thinks they're going to upset me by talking about it really.

So yeah more chemo tomorrow, not sure how long I'm going to be for, I'll be in the day ward so hopefully they'll be people around to chat to and that but I'll have my laptop with me anyway, really gotta start getting on with work.

I'm not sleeping that well yet, my sleeping patterns are all out of whack. I woke up at about 1am this morning and only managed to get another couple of hours sleep between then and 7am. I was hoping to get some sleep during the day after my appointment at the hospital, I did nod off for a bit but people keep phoning me up asking how I am :P still just means I'll be very tired tonight anyway.

Side effects wise I'm okay so far, I really need to take to them more about when I can start to expect them to kick in more heavily, I've noticed that there are some increasing numbers on my appointment card so I assume the treatments gets heavier as they go through, but that is a total guess. Hopefully most of it will be treatable anyway, I've noticed a bit of indegestian late at night, still getting the odd headache but they're pretty mild and I think once this blockage in my nose is sorted out that should help a lot to.

Another thing, I think I said already, I really need to talk to my consultant about is bone marrow transplants, I've been getting different information about how likely that is to be part of my overall treatment and I think it's something I should definitely be aware of as early as possible... especially since finding a donor might be hard because of the Czech blood in me. Plus I'd like to get a better outline of the treatment stages after the induction stage.

But yeah, all's going well :)

All quiet really

It's been pretty quiet since Christmas really, they only do chemo and that in office hours by the sounds of it so I haven't had anything done at all. The odd anti-fungal drip and bag of blood but really it's been very quiet. I'm feeling really good, getting tired a lot but that's probably more from just not actually doing a hell of a lot, just laying around in bed, plus I keep waking up at just after 5AM, wide awake and starving hungry... damn steroids.

But yeah my friends and my family have all been in and that, was good to see everybody. Result-wise everything's been pretty good, in fact they even let me go home and sleep in my own bed last night which felt pretty weird but it was definitely good to get out of the Hospital, though obviously I was straight back in this morning. Still, hopefully if everything is fine today they'll let me sleep at home again. I'm going down for a chest scan in about 15 minutes and then I can get straight on the drips I need so hopefully I should be back home this afternoon! Best not to get my hopes up though probably.... besides I just ordered lunch :)

The scan all went fine, the radiographer said there was nothing on there to worry about though he didn't mention the mass of lumps near my heart that did pop up on the CT Scan. But that was due to the fact a the heart scan was literally just of the heart, nothing around it, it can't penetrate air so theres no chance of you seeing anything through the lungs. I'm having my vincristine and daunorubicin drips at the minute and hopefully after the they are done and the consultant's seen me again I should get to be properly discharged! I've got all my appointments booked for the next two weeks, I don't have any more chemo until wednesday so it's going to feel weird not coming in to the hospital tomorrow. Though having said that I think I've got that appointment with the guy from ENT about the fluid in my ears tomorrow so I may be dropping in.

I've got a lot of information I think I need to start writing up really about drugs and treatments as well as the lifestyle stuff they've been through with me. To be honest it's all fairly straight forward, common sense stuff... though I am still gutted I won't be eating out or from takeaways for a long old time... but still they did say I could drink a little bit... definitely going to be ringing in the New Year with a bloody mary...

Merry Christmas!

So it's coming to the end of Boxing Day, been my first Christmas in Hospital and it's been alright. My sisters, my parents and my girlfriend were all here Christmas day. Yeah it was nice, naturally being ill I got spoilt rotten, got myself a brand new digital camera, clothes, DVDs, books, parents gave me some money to buy myself some dumbbell's and weights etc... start working off some of this excess food I crave from all these steroids!

Treatment-wise it's been very quiet, I've been taking my steroids and my red cell count was a bit low yesterday so they had me on a couple of bags of red blood. Other than that I've no more chemo until... Monday I think, which is probably another intrathecal, not particularly looking forward to that but still should be alright, it wasn't all that painful.

I did get a few results from the Doctor, apparently after the last intrathecal my spinal/brain fluid is looking clear from the leukaemic cells, so yeah I should be going back down to the standard number of intrathecal's rather than the weekly ones. However they don't like to do that based on just one result so it depends on the result of the next one, so here's hoping! Everything else is looking promising, there is a bit of a quirk in my liver function apparently so they've stopped one of my drugs for now, but I'm not on any drips any more, just been using my Line for blood samples and the odd bag of blood, so yeah, all going well.

I've been talking to some of the people on the Macmillan website, that plus the bit of a scare I had with the reaction to those platelets has shaken me up a little bit. I think, like I said before, I was starting to slide in to this place where I could just think that hopefully this would all be easy, just a few drugs and careful eating for a couple of years and I'll be fine, but there's definitely a lot of complications to face up to. Still, the chemo effects people in different ways, it mainly sickness and vomitting from what I can tell so it could be fairly dibilitating. That mixed with the massive appetite the steroids give me could be a very odd combination.

Christmas night I was getting pretty tired and feeling a bit sad after all my family and that left, glad my girlfriend was there though, that really cheered me up. I didn't make too much out of it because to be honest I can get pretty down when I'm tired so it's not worth thinking about too much, but it was definitely a bit of a downer to be in hospital away from all your family around christmas time. Still all the doctors and nursing staff were great, couldn't believe it when I woke up Christmas morning to find a bag of presents from the Hospital! Fair play to the BRI.

Started telling a lot more of my mates, letting everybody know about it all, mixed bag of responses, can be pretty hard to talk to some people about it but hopefully it'l all get round soon. It's the sort of thing I'd definitely want my mates to feel comfortable to take the piss out of a little bit, I know it's serious... but I'm very much of the opinion that if you can't laugh about it then what the hell can you do.

A few minor complications..

All of yesterday and the majority of today was pretty relaxing, had friends and family come to visit, a few drips, injections and blood tests but nothing really major.

Today however they wanted to get my chest echo, my intramuscular injection and another intrathecal injection done.

My programme does outline only three intrathecal's (that's the ones straight in to the fluid that surrounds the spine and the brain) but seeing as that fluid came back positive for leukaemia before now, I'm going to be having them weekly until its clear again. I didn't mind this initially, seeing as the original intrathecal didn't really hurt, but today was a bit of an ordeal.

Again I was a few platelets short so I had to have another tranfusion and seeing as I'd had them all before I wasn't concerned at all. So this Paediatrician came in to talk to me about the study that I'd joined, so that my case can be profiled against other similar cases and my care can be better tailored to my progress and I can try and get through it with as few side-effects as possible. I was trying to concentrate on what she was saying but I started itching... a lot... everywhere...and I mean, EVERYWHERE. To start with it was just annoying but I soon got pretty concerned when the rash broke up all over my face and my chest started to feel tight.

I called the nurse they did a test on my heart, which was fine, put me on some oxygen and saline and gave me hydrocortisone and piriton.

I was shaking and finding it a little hard to breathe... to be honest it was a pretty big reminder that this treatment isn't just going to be a lot of little injections and lying around in bed waiting for things to work, some of this stuff's going to be bad. Having said that though, they said the reaction to the platelets is fairly common (infact a haemotologist even came in to explain it to me), they don't match platelets to your blood type since apparently it makes no difference. They think the bad reaction is just something to do with different proteins and that. Still it shouldn't happen again, I'll be given the hydrocortisone and piriton before each platelet transfusion from now on so should be fine.

But yeah, after that I had the intrathecal injection... I said I wasn't worried seeing as the last one was fine. This one.. was.. painful. Sorry if anybody is about to have one, but this time the Doctor had a real hard time getting the needle where it needed to go, I got some shooting pains down my right leg, one of them made me shout out but thinking about it probably wasn't any worse than being kicked. It's just a very different kind of pain when it's inside you!

Still it made me sleepy and after a bit of a nap I'm feeling fine enough to blog it all...

Starting Chemo

After an alright night's sleep (still getting woken up for blood pressure tests and drip changes) I headed off to the fertility clinic again and seeing as I felt a hell of a lot better this time everything went alright. This was a big weight off my mind.

As soon as I got back they got me down to surgery to get my line put in. Seeing as I was just 2 platelets short of the recommended amount I had to have some more of them as well so my blood clotting would be fine.

The Line itself means that all the blood tests can be taken straight out of that, without having to worry about stabbing me with a needle and the drip chemicals can all go down it as well as any of the chemotherapy drugs.

I was given another local anaesthetic in my chest and some mild sedation so I was kind of awake but the whole thing was pretty relaxing, there was only a bit of sharp pain. Though at the minute, seeing as I'm pretty skinny, my chest is fairly bruised, but that should all calm down in the next few days.

So I also started the first chemo drugs, nothing really to report, I've got a bit of a mild headache but that's really started to go now. I had a quick chat with my main Doctor but really there isn't a hell of a lot to report, I'm responding well to the treatment so far, I'm going to need a scan of my chest to get done that's one of the next things.

But really today wasn't all that busy, managed to get a bit of sleep after my Line was put in and yeah, everything's gone alright. I'm not going to be getting out Christmas Day but I don't mind that so much, my girlfriend and my family are going to be here so I'm pretty happy with this, though I am looking forward to becoming an outpatient eventually, hopefully it will be sometime next week.

Fertility and Chemo

So I'd been told that Friday morning I'd be off to a fertility clinic since chemotherapy (what would soon be my primary source of treatment) had a pretty bad effect on your fertility it was probably a good idea head down there and make a deposit.

Needless to say I'd never been to a fertility clinic before... after going through some forms and general admin stuff with the staff there I was lead to one of the 'sample' rooms... now I'll be the first to admit that I was feeling pretty rough, my neck was still aching a lot, I couldn't breathe through my nose still and I was just generally feeling pretty crap. But still, I found it pretty hard to believe anybody in good health could actually feel comfortable in this tiny room with a sofa with a paper sheet on it, a tv with a headset and the less said about the lads mags and crap that was provided the better. After an hour there it was obvious it was going nowhere so we decided to head back to the hospital, I was pretty gutted and luckily my Doctor decided it would be safe to postpone some of the treatment so I could head down there again monday and give it another try when I was feeling better.

The rest of friday was really just more tests and a cluster of information. I had a CT scan (pretty straight forward, kinda similar to the MRI but it only took about 2 minutes) and a lumbar puncture. The lumbar puncture was sort of like the bone marrow test, again they use a general anaesthetic and use a really thin needle to get between the vertebrae in your lower back to get out some of the fluid in there for tests and put in a chemical that hopefully stops the leukaemia spreading there, or helps reduce it if it is there already.

One of the big concerns was about my kidneys, and I should probably try and take a second to talk about what ALL actually instead of just banging on.

This took me... a lot of research... infact to be honest to start with a I had to spell check the word Leukemia a fair few times, that's how little I knew about it. I'll just give an basic sort of outline of it.

Right Leukemia is basically blood cancer and since there's obviously so many different elements to the blood (thank you GCSE biology) different Leukemia's can affect it in different ways. So there's three basic types of blood cells: white cells, red cells and platelets. White cells fight infections, red cells carry oxygen and platelets are used to clot the blood. Acute Lymphoblastic Leukemia produces tons of immature, malignant white blood cells that don't fight infections properly, these cells (if left unchecked) will crowd out all the others that's how the damage is done.

So like I said one of the big concerns was my kidney's, when these white blood cells die they leave behind a naturally occuring chemical called uric acid. While this is naturally occuring, in large quantities you can really be at risk of screwing up your kidney's, so I was put on this enzyme called Rasburicase which helps get rid of the excess acid and let the kindney's function normally. So they had to watch my intake and output of fluid's pretty carefully, but so far that's looking pretty promising.

Another drug I've been put on and I'm told I'll be on it throughout the first stage of my treatment are steroids (Dexamethasone) which have a few side effects but nothing really to worry about (weight gain, mood swings). My parents and I did wonder if there was any chance that just the steroids might be enough to an impact without the more intensive chemotherapy but obviously the answer to that was no.

Friday, saturday, sunday really hasn't meant much else in the way of treatment, it's just been a lot of tests, a lot of intrevenous antiobiotics and other chemicals. The good news is my kidney's are responding really well to the treatment and they're working very well, it seems like while the Leukemia cells are all over the place they haven't really had a chance to settle in and effect any of my organs much at all.

Still my main consultant will be back tomorrow so I'll be getting a lot more details and information tomorrow no doubt, plus it promises to be a pretty busy day with tests and that so hopefully I might even have a pretty good idea when I leave the hospital by the end of tomorrow, but we'll see.

For a more in-depth look at the disease and the drugs this PDF is pretty helpful:

http://www.lrf.org.uk/media/images/CALL_7047.pdf

First things first..

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.