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.
FormerMember
If you want to take it seriously, why not just blog straight on to this board by way of the site links, and get some real feedback. I tried the link and got nowhere.
Hi Will, good to hear from you. I could access the link OK, but Ruth it right perhaps it would be useful to cut and paste the blog onto here occasionally? As Janis says you are a very brave young man, all the emotion you feel currently is quite normal, you really have been through the mill recently. I am sure the conversation with your tutor was not helpful either, but as you say she is a new kid on the block.Hopefully your meeting on Thursday with the student advisor will go better. I have a friend who had a baby at university and she managed to have extensions for most of her assignments, the concessions being made as she was a 'working' mum. You are right to research concessions afforded to disabled and students who may have young children, be pregnant or have ongoing health problems.
Hope you and Charlotte enjoyed the curry. Take care, love Debbie xx
Thanks guys I'll copy/paste the next lot :) Originally I thought it would be easiest to do it this way as I had also signed up to the Teen cancer part of the site as well, and that wanted me to post the blog separately there as well... but to be honest that site seems pretty rubbish, there's a lot more information and activity on this one.
