Eeekkk.....

Tommorrow is a pretty big day in my wee life.  Im finally getting my hickman line out, which is scary in itself and also a big deal because it really says to me that the doctors dont think im at a high risk to get an infection aka the line is mainly in for anti botics after a transplant.....

Jus wanted to post that.... yanoooo

Thank goodnessmy tooth is a bit better but im still feeling sick and being sick :/

x

"You have a bad day.." Or a couple more in my experience

Everyone gets bad days, days when you wake up and you feel like punching someone, or else the simple no patience at all for anyone with silly questions. My day today is deffo punch and throw things, which I have already done. No no! not punch anyone, just threw some stuff like a pillow and then a bathroom storage unit that is wicker and has no weight whatso ever... really I just pushed it to the ground in anger.

Why am I angry or having a shitteee day? Because I have realised par from the few actual mates who are ACTUALLY really busy with stuff that needs their full attention, all my other friends or so called friends have suddenly disappeared. It seems because I can't go out and drink or I dont have the energy to go out at strange times of night for a "cruise" or drive that no one contacts me. Now I'm not feeling sorry for myself, but literally NO ONE contacts me unless I contact them.... and thats not what friendship is about. Is it? If it is then I need re-training in friendship.

I have seen since the time of my transplant that I can no longer spilt myself from medical Jane to normal Jane, because the two have somehow fused together without me realising. The whole day is taken up with me drinking three litres or else moisturing because my skin is dry from the transplant, or else peeing because Im drinking. Orrr I get tired and sore... or my constant mouth washes and mouth oral medicines to prevent anything really bad happening in my mouth... then its back to more fluids and then wohh its bed time and no one has contacted me.

I know its all about waiting, but Im fed up waiting.... its 100 days till my anti rejection drugs gets decreased... and im near that date but i dont think that is gonna change anything. Im heart scared of getting ill again, but who can i tell? No one.... I don't want to bog my bf down with it and one friend in particular didnt even ask me how i was after i went to A and E....

It seems having a transplant has come at a cost. Not saying its not worth it, just saying that it has cost me more than I ever thought it would have....not even getting invited out... friends not making time to do other activites that dont invovle a lot of energy or drinking or packed venues....

I just hoped things wouldn't change... but life can't stay the same, oh yes it can remain shit.... but a different shit every shitty day.....

Sun, Wisdom and the figure 50

Clearly I am not built for this warm weather, I feel like my dog right now, who is currently out the back in the garden because everytime i bring him in, he suffers what only can be described as a train attack, where he pants that quickly his tongue goes purple. So im sitting trying to keep cold but i feel no breeze coming through my open windows. Oh well, you cant complain when the weather is lovely like this, we rarely see it!

Wisdom you ask? MY TEETH! I am praying, and hoping that the tooth coming up is NOT impacted but i have a sore throat just on one side and my entire gum feels like it will explode... my tooth also hasnt come out in line with the rest of my teeth.... I'm worrying.

The figure 50 being that i have reached day 50 out of 100 of my transplant, which means Im fifty days away from being out of danger of getting graft vs host disease (were the cells attack your body because it realises you arent its normal host aka mum lol) So im pleased with that, because after day 100 they start to decrease my anti rejection tablets and then i can stop this whole drinking of three litres every day, which is pretty hard with this tooth!

Is it weird that I sat indoors all day because i was tired but that i applied sun lotion just because it smelt of coconuts? Noooo... neverrrr *keep telling yourself that*

Page Upon Page of Book Pleasure

I am a great lover of books, it may seem geeky to some or else a waste of time for others but a book is something I never bore of, I look forward to turning that page and reading the next segment in the story. I love thinking up what the characters look like and I am deffo one of those people who hate when a book is turned into a movie, where upon the movie decides to
a) ruin my character images
b) leave out crucial parts of the story/plot line
c) ruin my opinion of the book

The most I can read in a day? A full novel, which is usually 400 pages. I suppose a lot of people can do this, but it gives me great pleasure in reading books and this is where my post is going. I decided last night, to cheer myself up that I would go on and write down books that I want to get. I came up with these titles and actually ordered one of them, which I am very excited about because its a sequel to a fantasy fiction series. This is my list
1) When God Was A Rabbit
2) We'll Meet Again
3) Moon Over Soho (the book I ordered, which follows on from Rivers Of London)

So my plan is to get these books (the first two were on the Tesco Book Chart) and read them all with glee.
A simple blog post but a topic I never bore of.
P.S. I hate ebooks and kindles.... where's the smell of the book? the crispy turn of the page? the whole library industry is dying out and it saddens me.....

Keep the books alive! Not the ebooks!

Update a roony

Woo, my 50th post on my blog, for me that is epic times. Blogger was down for a while (well for me it was) so I couldn't post about anything. Time for a update? A round up of my news? I think so.

I have been in Dublin now for six and a half weeks, to be honest I would deffo not be able to live anywere else other than home. I don't even think I could become one of those young people who take time off to travel to various countries, that's just not me... I prefer home comforts and my own bed etc. So yes I have been going to the HODC (which is the name for the day clinic) at the hospital nearly every day, then they started to lenghten it to every other day. For example this week I'm at the hospital Monday (yesterday) Wednesday and Thursday. It's not only for bloods but incase I need fluids or blood etc.

Yesterday I had the added charm of waiting for five hours in total at the HODC after getting fluids and then waiting to see my doctor, I then had to sit for 50 mins on a nebuliser for my lungs to prevent infection. I have never used a nebuliser but it has such a digusting taste and you breathe it in for 40mins.... but fortuately I only have to do that once a month to give my lungs added protection.... I suppose anything that will lower infection risk I will take lol.

No one has been up to visit me, the boyfriend has been busy with work and when he isnt at work I seem to be having a long day at the hospital... I don't know how people do LDR. It gets very lonely. I don't know how people just up and leave their home and then set up in a new location all on their own.

I'm trying to rack my brains to see whether I have any other news.... Well the Queen is visiting Dublin and the police are manic down here... police everywere. She is visiting the guiness storehouse, which is just round the corner from me at the moment... maybe she will take a big gulp of beer.... lol.

I suppose at the minute Im holding in my excitement about going home because I dont want to jinx anything... so I shall only be getting excited on the actual departure day. God I know its only 11am but im starving.... early sneaky pizza lunch? Too hard not to resist....

Toodles for now. I shall let you know if my with-holding my excitement was worth it as soon as i get the nod from the doctor....

"I just need a compass"

The quote by the way is taken from a song called Crystal Ball by Pink, which is lovely if you listen to the world "i wouldn't trade the pain for what I have learnt" I suppose in a way I'm like that, I wouldn't ever strike up a deal with someone if they said to me "i can take away everything that was bad in your life and you could forget" because I don't want to forget.

I know I talk constantly about being unwell but this blog was created for that single purpose, to highlight my good and bad days and for me to re-read at a certain time what happened. I suppose its a solid reminder to me later in life to be grateful, which is what I was talking about in terms of striking up a deal. I wouldn't want to take the deal because then I wouldn't be the person I am today. I wouldn't realise that there are very ill people in the world, and in terms of my illness I am a pin hole in the world.

The hospital I'm at is the centre of excellence and most people are very ill, and when I "people watch" I feel more grateful for how my condition has turned out, as in I am being treated and can live a normal life unlike some patients who I see walk past me.

Anyway on another note my counts (white cell count) was finally above 5 so that meant that i .... COULD LEAVE MY ROOM :D

Yes! You heard me right, after FOUR WEEKKSSS, which is 28 days confined to one room. So me and my mother went outside... now for some I may seem like I'm over reacting but I haven't been out in 28 days, so we went into the patients garden and I found it sooo noisy in comparison to my room. The birds and people talking.... Anyway I sat out there and walked about then went to the coffee shop and had a nice salad sandwich after not eating a sandwich for the same lenght of time as I have already said. I swear it was like being five and given a balloon and chocolate or something.

My title is all about me finding my way back, and I think I'm finally on the home stretch in here in terms of being discharged. The doctors are hoping to get me out and allow me to live in the Dublin flat by Wednesday or thinking about it on Wednesday. Soooo the timer has been set in my mind and im just literally counting the days and trying to get the days through because I don't know what else to do in here (hospital)

So if someone is reading this (god knows) and needs encouragement about anything (self confidence, breakups, sadness) I just want to let you know that eventually everyone finds there way back to where they are meant to be... or where they are meant to be going. It may take some time but eventually you get there, because what else can you do but get there? You can't just sit on your bum and cry.... well occasionally we all can... but you get me

If you get sad listen to "higher" by saturdays with the remix of the man in it (the rapper, not sure of his name) because that can cure all things.

xo

To Sink or Swim?

It's now my third week in isolation, after five days of high intense chemo, a stem cell transplant, a throat infection and not being able to walk due to having no blood counts.

I suppose in a sense when I re-read that, I have come a long way, but this isolation room is getting me down... big style. I have suddenly realised that after three years of continous treatment for my disease that I am ill. Normally I say "awk im grand" and smile or laugh and say "soon be okay" But at the minute I just can't seem to do that anymore. It's like i have come down to Dublin to get this done and suddenly realised that it has taken another human being to save my life, to make me better.

Since the age of 16 I have been ill and i think finally I have realised that I was not in the dream land I created for myself, were I had to being constantly busy because if i wasn't then I would sink and no one would rescue me.

Soooo the question to sink or swim seems simple enough, I want to swim, I want to reach the shore where all my friends, family and boyfriend are waving at me, but somehow there has been a tide change and I'm sinking, and no one can reach me.

I sound highly depressing at the minute but I think it's because of the isolation room and not being able to see anyone.

Anyway that is my update, I'm still here, whether it be swimming or sinking. You can't run away from anything I have realised.

So my question to you lot..... Would you be a sinker or a swimmer. I hope you are all both, because no one can be that strong that you can constantly being swimming, no one is super human. No one.