Another long week

Well I got discharged from Hospital on monday after all my chemo, managed to persuade them to keep me in the whole day rather than pushing me in to the day area since I felt pretty rubbish. Plus I had no food with me so I would have been absolutely starving all day. The Cyclophosphomide and the IT chemo really knocked me, infact it's the first time I've vomitted since all this started, that drive home was no fun at all.

I felt pretty crap throughout tuesday and most wednesday, headaches, tiredness and nausea but it started to ease of wednesday evening. Wednesday my parents and I met with Professor Spencer Marks (my consultants husband) to discuss my transplant. Again it was another meeting of pretty upsetting facts and figures, but I have every confidence in him, he seems brilliant. The first thing he said to me was that they are very confident of a cure for me and I could tell he wasn't the kind of person to say that unless he really meant it. He's been writing papers and conducting studies in to ALL, he was leaving for the US in the next few days to present a paper on their findings, so I'm confident he's the man for the job.

Wednesday was also my 22nd Birthday... probably not the best birthday I've had! But still in the end it turned out pretty good, I started to feel a lot better in the evening and I got some briliant presents from my friends and family, plus I watched WALL-E. I was pretty suprised when the nurses in the day area came round with a card and a little cake for me, it was very sweet of them.

Thursday and Friday I've been feeling okay, pretty tired and the odd headache but I'm eating a lot better. My sister came down and took me to the Hospital both Thursday and Friday which was good, it was nice to have somebody there for a change. Thursday's treatment was pretty quick which meant we could head down to the pub after, where I had a cracking sausage and mash. Friday however we were not so lucky. Arrived at the Hospital at 11:30am, I think I got home at about 10:30pm. I had to have a couple of bags of blood, which in itself takes ages, then I had to go down for an MRI scan of my head just to make sure these headaches weren't anything serious (I'll get those results on monday I suppose), the porters took ages as did the scan, then the porters managed to lose my notes so I couldn't carry on with my treatment until they were found.... then the fire alarm went off.... it was a long day.

Still today promises to be fun, got all my mates round for my birthday, gonna play some games and that, should be good. Just a bit worried since I woke up this morning and the wound where I had that biopsy done back in december feels really tender and sore all of a sudden, I'll give the hospital a ring in a bit I think and ask them about it.

In myself I'm feeling... alright. I'm pretty worried about all the facts and figures that the Professor gave me about the transplant and the cranial radiotherapy but at the end of the day it still sounds like the best route to cure and if he's confident then I should be to.

A rough week

My parents and I met with my consultant on Friday and while there was no terrible news, it still seemed like a pretty devastating meeting. I hadn't had any proper sleep for days so to be fair any bad news would have seemed a hell of a lot worse than it really was. I suppose the news wasn't really even that bad, of the three test results from the bone marrow test one of them came back positive. This means that I'm going to be stepped up to a slightly more intensive chemotherapy regime, which is a bit gutting but looking at the regime I would have been on anyway it doesn't really seem all that different, I would have to be in every day for both of them anyway, one of them just lasts longer.

The other thing is that its now been recommended that I go for the bone marrow transplant, I've got a meeting going in to more of the details of it on wednesday. They say there's a very good chance of finding me a suitable donor since I'm such a common type, so that doesn't sound like much of a worry. The upshot of it as well, by the sounds of it, is that its a much faster route to overall cure. My consultant basically said theres a choice between having the transplant in a few months time or having several years of chemo and radiotherapy, it sounds like they've consulted loads of specialists about it, including some leading expert in America and they all concur that a transplant is the best way to go. I suppose none of this sounds all that bad but when she started reeling off this list of possible complications, side effects and survival rates.. it was pretty tough to listen to on so little sleep.

Anyway it's all sort of settling in now.

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Ended up heading in to hospital last night, had a pretty bad headache I just couldn't shift with the painkillers I had, feeling alright now though. Saves me driving in for today's chemo at least! Starting my new regime today, 4 and a half hours of Cyclophosphamide, IT Methotrexate and an hour of ambisone... so it's going to be a long day but at least I've got a bed. Doctor's have just been round, they don't think a scan or anything is in order, the headache still there though its nowhere near as painful as it was. I'm a little confused as to what's caused it, since I haven't had any chemo for days.

More than a month since diagnosis

Woke up at 3am again, feel like I haven't had a decent nights sleep in a month. I thought I slept fairly well last night but I still felt absolutely shattered all day, strange thing is the day before I felt pretty good and I got next to no sleep the night before that...

I'm still hoping it's down to the steroids but I don't know, I've been getting a lot of indegestion and heart burn over the last couple of days which has been keeping me awake as well. Everything I eat seems to burn and my appetite's nowhere near as much as it was before. They mentioned possibly increasing my ranitidine dosage, I'll mention it to Jenny on friday, but at the moment I'm just taking some gaviscon indesgestion medicine now and then.

Really it's the tiredness and lack of sleep that's really start to get to me, I've said before I'm bad enough normally when I'm tired but haven't not slept properly in so long it just makes everything else seem so much worse. I don't really feel all that sick or anything else but being tired I just worry and get upset about nearly anything, not to mention the fact I hate feeling this grumpy and irritable all the time.

Worse than that it's my girlfriend I feel for the most, my family see me every few days or every week or so, she sees me almost every day and is the one that really bares the brunt of the fact I'm grumpy and upset. Sometimes all I think I'm doing is bringing her down, when really she doesn't deserve any of this, I know nobody deserves the situation but sometimes I just think she'd be far better off without all of this.

I can't believe it's been more than a month since the diagnosis now, doesn't feel like that long at all, things are starting to settle down I suppose but I'm hoping the second stage of chemo's going to go a little smoother... or at least just let me sleep a little easier.

Big day today..

4:18am, not a lot of sleep again but I'm trying to be more disciplined about getting out of this living room and going back to bed for a few more hours sleep.

Today's going to be pretty epic. Get to the hospital for midday for:

1 ) Ambisone

2 ) Bone Marrow test

3 ) (possibly) another intrathecal

4 ) an hour drip

Looks like another 7 hour session so I'm gonna get a taxi down there.. and make sure I cook myself a big pasta salad to take with me and don't forget a fork this time.

To be honest, I'm kinda nervous, it's a lot of treatment but I really want those results from the bone marrow. From talking to Jenny the results of this bone marrow really determine my treatment for the next month or more and I'll find out exactly how much my counts have recovered.

Big day, I'll write more later.

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It turned out I only had the ambisone and some IT Chemo today, the bone marrow needs to be taken straight to the lab and tested so trying to do it on a friday afternoon wasn't going to happen.  So I've got the bone marrow test on monday but my blood counts are really good so we're going to go ahead and change around some of my drugs.

As of now I get to start taking less and less of the dexamathosone (the steroids), which is brilliant, and on sunday I have to start taking the Mercaptopurine.

I'm headed back home this weekend to see my family and my friends so should be a good weekend! Feeling pretty good, the sickness has been calming down and I've got some other pills that should help anyway.

Right, I better get some more sleep, busy day ahead :)

Good weekend but knackered

In bed at 9pm... awake at 1:30am... really looking forward to getting off these steroids.

I had a good weekend, mum and dad came down saturday and cooked us a meal and we watched Overboard (romcom classic). Few of my mates came down saturday/sunday as well, really good to see them, played a bit of Wii and... yeah, cooked some more food. Cooked an absolutely cracking leg of lamb sunday night, with apple pie for pudding. All those episodes of Come Dine With Me and Masterchef are starting to pay off.

Monday was a bit of a joke, had a meeting with the student advisors at 10am, which went fine, got all the information I needed about Student Disability grants and that... more bloody forms to fill out, be glad when that's all done. Right after that the hospital phoned me to ask why I wasn't there yet, turns out they got my appointment time wrong and I was supposed to be there for 10am. So I went straight there from Uni, without any of my stuff, got there just after 11 and was there until 6. I only had 2 and half hours of treatment, I have no idea how it lasted 7 hours.

Feeling pretty sick at the moment, I took the anti-sickness they gave me but it hasn't helped all that much. It started yesterday morning really so I'm not sure what set it off, just general nausea from chemo I suppose. Right, I should probably see if I can't get back to sleep...

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Bit of a bombshell..

Yesterday was a lot of information to take in, I had a meeting with my case consultant and my specialist nurse, finally raised all the lifestyle and safety stuff that I'd wanted spelt out for me.

The first thing I spoke to Jill (my specialist nurse) about was my parents. Obviously I want them to be involved in everything, otherwise they're just going to worry and with all the good will in the world I don't think they would trust me 100% trust me to tell them absolutely everything. So Jill says she can do regular phone appointments with my parents and let them know everything that's going on, I think that would put their minds at ease to have a direct line to somebody like that. I don't want to have to worry about them worrying if you see what you mean! Plus Jill said that Jenny (my consultant) could always ring them now and then to let them know exactly how treatments going as well. So that was all positive.

What else... I spoke to her a lot about lifestyle stuff and exactly how strict I'm going to have to be about going out in to crowded places and all that kind of thing. To be honest I knew what she was going to say, I just really needed it spelt out for me. In fairness she did say that if I wanted to plan a trip or a day out I should just keep an eye on my blood counts and see how I feel but for the most part it was pretty much a resounding 'you cannot take part in social situations'.... Now I'm 21. I don't go out loads. But my age group goes out to clubs, bars and gigs. To be fair, out of all of me and my mates I probably go out the least and I had been starting to get real bored of going out to the same shitty clubs in Bristol... but still, to be told point blank how careful and aware you've got to be about it was pretty devastating. 

With all my best mates spread across the country at different Uni's I'm pretty gutted that I don't have the freedom to just jump in the car and go see them whenever I want, primarily because I can't be too far from the hospital... I'm not looking forward to saying to people "sorry I can't do that... I have no immune system", that's gonna sound great..

Even just thinking what I'm going to do when my parents come down today is difficult, I'm not really supposed to go to the cinema, though if it was a quiet showing it would probably be fairly safe.

I did ask her about gigging and that, obviously going all the way to Brighton to do gigs is pretty much out of the question (gutted...) but I think again if I keep an eye on my counts and I'm feeling good there's no reason we couldn't keep gigging now and then. Might have to skip the sound check and just turn up for the gig, get George and Ben to set everything up... be a fucking pain in the ass but better than giving it all up surely.

I mentioned exercise as well, Jill really just told me to do whatever I want, obviously I'm going to be knackered a fair bit, so just do what you can.

So after talking to Jill I got to speak to Jenny about the next stage of my treatment. Although it is all pretty dependent on the results of my bone marrow test at the end of this cycle, it looks like I'm going to be in hospital every single day. Monday's will be a 4 hour drip and an intrathecal... which is a quite a lot, but then the rest of the week is just quick injections so hopefully overall I'll be spending less time in the hospital overall. Looks like I'll be off the steroids fairly soon as well, which is a relief because I hate not being able to sleep properly.

At the moment it's looking like I'm not going to need the bone marrow transplant, although really it depends on the results of the MRD bone marrow test at the end of this regime. I'm really hoping I don't need it, it would definitely be a weight off my mind.

Also I've got somebody coming to talk to me about Radiotherapy, which is likely to start after the second regime of treatment. I'm pretty worried about that, to be honest, mainly because I know nothing about it I suppose but still it just sounds a hell of a lot scarier than being pumped full of drugs.

So that's where I'm at really, it was a lot to take in, and a lot of it is pretty shocking. I think I'd partly kidded myself that I was going to be able to swan in to hospital a few hours a week, have some drugs, feel a bit shit now and then, and eventually get better. Lot to take on board.

Treatments

5:10am.. again didn't sleep all that well, still I'll probably head back up to bed in a little bit, try and get a couple more hours sleep, haven't got to be at the hospital until 11am today. I've gotten to wondering... can you take all this stuff too seriously? 

I know treatment and being careful with lifestyle stuff is important, but it seems like at the moment that's all I'm doing. Sorting out benefits, reading up on treatments, the leukaemia and obviously going in to hospital three times a week and doing this blog... to be honest I'm just looking forward to University starting up again and my housemates all getting back, hopefully things will get back to some kind of normality.

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Thought I'd give a little break down of the hospital treatments I'm on, so here are the chemotherapies:

Asparaginase - A colourless fluid. I get this injected in to my leg muscles as two seperate injections, it's fairly painless. From what I've read the possible side effects are pretty standard for this one.

Daunorubicin - A red fluid. Since I'm on a pediatrics regime I get this as a drip in to my central line, again the side effects are the standard ones you expect from chemotherapy, but all the material I've read says it effects different people different anyway.

Methotrexate (IT Chemo) - A yellow fluid. When I mention IT Chemo, or intrathecal's, or lumbar punctures, this is the treatment I'm on about. They involve me lying on my side and a Doctor numbing part of my back with local anaethetic and then using a really small needle to get through to the fluid that surrounds my spine/brain. It's probably the worst of the lot, I had one Doctor catch a nerve a few times and really hurt me, you have to lay flat for a couple of hours after as well to avoid headaches so it does take ages.

Vincristine - clear fluid, pretty sure this is just given as a drip through your central line as well. This is the one that makes your fingertips go numb, something I've definitely noticed. The Doctor's said if it gets any worse to let them know and they'll cut the dose, but so far it's only been pretty minor.

Ambisone - A clear/greeney fluid, given as a drip through your central line. It's an anti-fungal chemical, combats infections from airbourne spores. This isn't chemotherapy, but I've still gotta have it three times a week.

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Long day today

Just got in to hospital, today is Ambisone, Asparaginase and the IT Chemo. So I'll have to lay down for a couple hours after that as well, gonna be a long day... and I missed the sandwich trolley... damn!

Felt pretty good so far today, nothing really to report to the Doctor I think, might mention getting another ENT appointment just to check up on how that biopsy they took from inside my nose is healing up just to make sure. Slept alright last night, from about 10:30 til 6:30 so a good amount really, definitely going to take all my steroids straight away in the morning rather than spreading them out through the day.

So not a lot to report, the day area here at the hospital is jam rammed, busy day. In fact they've been having a hard time getting people seats its that busy, I guess they never know how many friends/family people will bring them and to be fair to them they haven't asked anyone to give up a seat at all. I got the nurses on the ward a card and some chocolates today, haven't given it to them yet, waiting for one of the ones I actually know to walk by!

There's a few lifestyle things I really need to talk to the nurse about actually as well, I think my Mum and Dad should really sit down with her as well and ask all the things they want to know, otherwise they're just going to worry all the time. End of the day avoiding public places when its busy and crowded is fair enough, but when your going to a hospital full of sick people 3 times a week anyway... there's got to be a trade off between well-being and safety, I can't stay wrapped up indoors all the time.

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I was in the hospital for seven hours in the end, so quite a long day, the intrathecal went fine and the intramuscular's were fine really as well. It's 5:27am... so I didn't sleep all that well, but I feel fine really and I can always sleep more later on. I'm pretty suprised, still I'll take it easy today, I've got to go in to University to sort out referring modules but other than that I've got nothing planned.

I still really need to talk to the specialist nurse about lifestyle stuff, the more I think about it the more I realise there's so much I just don't know if I'm allowed to do any more... but then part of me thinks, like I said before, since I'm spending a good 15 hours a week in hospital surrounded by sick people surely... I don't know, we'll see.

My heads pretty cold

It's been a fairly quiet few days I got out of the hospital friday morning and I'm not due back until 9am this morning. It is now 4:26am and I've been awake since about 2:30am... definitely starting to notice these steroids keeping me awake. I went to bed at about half eight so I'm getting about 5-6 hours sleep, which isn't too bad, least I can sleep during the day hopefully.

Today I'm due some chemo (not sure what exactly but it's not IT) and ambisone so I'll probably be in for a fair while, still it shouldn't be too bad.

Got my head shaved yesterday! Looks better than I thought it would, but chances are I'll still be wearing a hat most of the time anyway... it's pretty bloody cold out.

I've had a pretty good weekend all in all, felt alright, few mild headaches and my fingertips are feeling a bit numb but not bad. I've noticed the steroids really keeping me awake a lot more, soon as I'm up there's not much chance of me getting back to sleep, even if it's 2:30 in the morning, plus being tired doesn't help how irritible they make you.

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Just got back from the hospital, feeling alright, all the treatment was done and that last IT came back clear but they still want me to have the one on wednesday just to make sure. They mentioned finding some red cells in the results which sometimes can mask leukaemic cells so they want to get one more 100% negative result before they make the decision to drop the weekly intrathecal's.

Managed to get a few hours sleep so I'm feeling a bit fresher now, looks like Charlotte and I are going to cook another curry as well.

I've got to be honest I'm feeling really, really irritable having hardly had any sleep. I was getting really angry with my parents over nothing yesterday and this morning. It's terrible to know all the really shit parts of your personality that you can normally hide behind self-restraint just get completely exposed when your on these drugs... and so tired.

Heard back from my tutor today... honestly, if you've got nothing constructive to say... She's new to the university so naturally doesn't know the system but she's not sure "how much leeway they will give me". I haven't paid that university thousands of pounds and spent the last 3 years there slaving away just so they can give me no kind of leeway when things go bad... I've got a student advisor appointment on Thursday so hopefully I can get it all sorted then, I'm just researching what support they give to disabled students or girls that get pregnant. Not a lot of details here to be honest it looks like it's a pretty case-by-case basis.

Ideally I could put back my 3rd Year Project deadlines to the summer and that would take the heat off everything and I fail to see why that would be an issue. Every project is totally different, having a different deadline for it is irrelevant, it's not like it's an exam I'm going to know the answers to, it just means I have time to actually do it. I've sent off another e-mail to the module leader anyway, we'll see what he says.

Happy new year :)

I was in the hospital until just after 6 in the end yesterday, the intrathecal wasn't too bad, went a lot better than the last one. So it was just that and the ambisone, my platelet counts and my clotting were really good (over 190) and hopefully that lumbar puncture will come back negative so I don't have to have them once a week. They said I was responding as well as I possibly could be to the treatment so far, which is good, though they didn't manage to get through to the private hospital where I had that biopsy done (to be fair it was new years eve). I'm really hoping that the  headaches I'm getting are being made a lot worse by this blockage their on about, so once they sort it out I'll be okay.

Last night was good, cooked an absolutely blinding curry from my curry book, it was luuuush. Though truth be told it went pretty much straight through me after that chemo :P still, it was a job bloody well done. Set off a big old box of fireworks as well! Something I'm sure my neighbours didn't appreciate, but nevermind. Then my girlfriend and I just watched Jool's Holland's show... christ Lenny Henry and Al Murry had to be the two most embarassing old farts on TV last night, actually felt sorry for Dawn French sitting at home watching her husband act like a proper twat on national television.

I'm headed to my parents house today, pick up some stuff and get my car back, be good to spend some time their for a bit, though I've got to be in hosptial at 10am tomorrow so I'll have to come back this evening anyway. Least I can get my PC, got plenty of games I haven't played yet, should pass some time.

So the headaches have been pretty constant, I might see if they can give me something on-top of the paracetmol, plus I've been feeling a pretty sick and yeah had diarrhoea since last night... feeling alright now but not great, still no temperature or anything so it's probably just a side effect from yesterday's chemo.

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Back in hospital! Looks like I might have a virus of some sort, though my stomach's been alright since this morning I've felt a bit sick and my headaches have been really bad, but then they said the intrathecal wouldn't help that. Feeling alright at the minute, my mum and dad are on there way here, shame I didn't get to go back and get my car and that but I can always get it at the weekend. Feeling okay at the minute, had painkillers and anti-sickness so I'm alright, not much of an appetite but okay.

I'm starting to realise that the treatments and the hospital visits aren't going to be the tough part of this whole thing, luckily my mum is as tough-as-nails and I've got some of that in me when it comes to medicines and treatment. The parts of this I've found hard have been getting home, everything suddenly feels very... very... real. In hospital it's like an episode of Scrubs or something, kinda surreal so you can abstract yourself from it all but when you get home and all your care is in your own hands and the people around you, the pressure builds up. 

I'm pretty lazy at the best of times, so with these kinda symptoms, motivating myself to do uni work is going to be no fun at all... I've still got that essay to be getting on with, which truth be told I should be doing right now. Having said that, I know I'm going to do it, there is no fucking way I'm failing this year, okay it might cost me a first grade but I'm going to be graduating this course with the rest of my mates. Once I meet up with the student advisors as well and get some extra time for that project that'l take the pressure off, the rest of the work is pretty well structured really and with the odd 10-day extension I think it'l be fine.

That was a pointless little rant, anyway, looks like they're going to get me some blood in a minute so chances are that'l pep me up a fair bit once my red cell count goes up, I'm feeling okay now really, not sure whether to push to go home or not. The nurse in charge of me is the bossiest of the lot so chances are I won't have much of a say anyway... besides it's jacket potatoe and beans for supper... :)

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Mum and Dad have just been, smuggled me in a bit of pizza as well seeing as they're always pretty stingey with supper portions... they popped down to my place in Fishponds as well to deposit a load of ready cooked meals so that'l save me cooking for a little while! Feeling much better now, having my first bag of red blood, gonna have a second later on, had some anti-sickness and paracetemol feeling a LOT better. Looks like I was just a little be anemic and that was aggrevating my headaches, plus with the intrathecal... anyway, I can stay here the night, get the ambisone done ASAP and then have the whole weekend of hospital free time.