woke up in a good mood but how long will it last lol

Had a very busy day yesterday cos had dieticians and pallative care and social worker and youth worker and Dr cook come and see me. Everytime i tried to dose off something or someone would be there lol. My friend Katie also popped into see me before her clinic appointment which was very nice of her. My highlight of the day though was when Dr Smith came to see me lol. He will be coming back later in the week as well cos he is covering the transplant doctors i think. I must be special as i don't think everyone would get a visit from him hah. My mouth is so sore today but i am still forcing drinks down as it does help it once ive got through the pain. I have to have my naso gastric tube flushed everyday so it doesnt get blocked up. It made me feel sick yesterday cos it was so cold in my tummy. The nurse last night though used a small syringe and my own water and i didn't feel it this time so i hope that the rest of the nurses do it this way please.

I would just like to say that i hope that from what people have seen on look north that the BMT is not a walk in the park and you don't recieve the new cells and leave hospital cured. Sadly this is not the case and i will still be recovering this time next year. I think this is why i wanted it all filming cos a lot of people don't realise how complicated it is which is why i want to share my journey with you all. I am hopeful that most newly diagnosed patients with cml wont have to have a BMT but will respond to glivec and friends. These drugs are amazing and the side effects become tolerable etc so please if you have cml try not to worry about having a BMT. I am just a bit weird and like to be awkward that is all lol.
I am having my hair shaved off in a bit cos it is really hurting me now it is close to falling out time. It kept waking me up in night everytime i laid on the back of my head. My fav nurse is off tonight but to be fair she has worked like a week solid so dont blame her lol. She is back tomorrow so i hope i am under her care not that i dont like the other nurses, just  i havent had a diff one on the night shift yet. I am now on a higher dose of morphine and boy am  i having soem weird dreams but at least they match my weird personality lol.

'I've got wires going in...i've got wires coming out of my skin'

you got wires, goin in
you got wires, comin out of your skin
you got tears
making tracks
i got tears
that are scared of the facts

running down corridors
through automatic doors
got to get to you
got to see this through
i see hope is here in a plastic box
i've seen christmas lights reflect in your eyes

you got wires, goin in
you got wires, comin out of your skin
there's dry blood on your wrist
your dry blood on my fingertip


i see it in your eyes
i see it in your eyes
you'll be alright
ATHLETE-WIRES

I think these lyrics sum up what i am going through very well so i thought i would share it with you all.

I have a new accessorie attched to my body a NASO GASTRIC TUBE to go with my hickman line and syringe driver in my arm. I just hope i dont have to have a catheter at some point. The naso tube has being put in because at some point i will not be able to eat and drink due to the mucositus that has already started developing in my mouth and gut. It is one of the many effects of chemo and Total body irradiation. I am still managing to eat and drink fine at the moment even though it hurts a lot. I am not going to be lazy and use the tube if i don't need to. I have been put on those forti drinks which are the equivalent of a meal and they do not like me i feel sick for hours after having it so not there biggest fan. I am on chemo every 3 days til the 7th of december now which i was a bit shocked about cos i thought i had finished all the nasty treatments. Apparently because i have had total body irradiation it means that i am at higher risk of graft versus host disease so the chemo i have now is to try and stop that. At the moment it is hard to imagine been out of here anytime soon cos the treatments aint even finished yet and i am still waiting for all the side effects like hair loss and vomiting and the mucositus etc. For now though i will enjoy frankie boyle (even if it kills me to laugh) and my sweets yum yum

Day 0

Yesterday whizzed by in a blur!
Its been strange so far, you might think time would drag but up to now and I know I may be tempting fate here, time really hasnt gone slow at all. I fear that may change because as stupid as it sounds I have actually been quite busy. Yesterday morning started with my usual trip to radiotherapy and then back to my room for some sleep. This was followed by a repeat of Wednesdays morning chemo session and all the accompanying other bits n bobs. One of the two main docs came round to review me and see how I was getting on. I gave her my list of problem areas, covered most of my body lol. She was very thorough and seemed to have potential aids for pretty much everything. Sadly they may help a bit but I know its going to be a real hard couple of weeks ahead. One of the things she requested was a CT scan. For this I needed a cannula put in, yet another thing into my body, how many needles and entry points do I want! This would allow them to put some dye into my body though last time they had one put in me and then never put the dye in. Was meant to be before my evening dose of radiotherapy but there were some delays so I had the radio first, even more uncomfy than usual now I had a bloomin cannula in my hand. Then off to the CT scan and that just about concluded my business for Thursday.

Friday, the big day! Started off with my final trip down to radiotherapy. I was frozen! So then back to my room where I tried to get some shut eye before the cells were delivered. I was given yet more things through my hickman line that were to help prepare for the stem cells that I would be getting later in the day. Penny was here just after lunchtime to do some more filming for Look North. And then it was all systems go as the stem cells arrived on the ward. They were readied for me and then brought into my room. I could feel my nerves building up as the time approached for them to be given to me. And at the same time I was obviously excited, all that time I had been waiting and now the moment had come. The actual process was very simple, it basically looked like a bag of blood that was brought in and this was attached to the hickman line. I immediately felt ill, my heart seemed to be beating at a billion miles an hour and it made me feel like my head was going to explode. My solution was to try and sleep again which sorta worked. And before I knew it the stem cells had all been transferred into me and it was done! The thing that had been bothering me the most about the whole thing was that I had been told that it would give off a really really strong smell of sweetcorn. And guess what it didnt! Although that does happen in certain instances, mine wasnt that type of stem cell donation. So all that worry for nothing. I know you may think I am weird that my greatest worry at a time like this was the smell but welcome to the world of Lauren Hards!
Thanks to anyone who watched me on Look North tonight and special thanks to Penny for all her hard work.

Just Been Zapped

Another day nearly over and after being comatosed all day, its nearly sleepy time and I am wide awake. Trust me to be contrary. So lets tell you all about my exciting day. On the edge of your seats I bet lol. So the morning began with my trip to radiotherapy for my first dose of the day. Then back to my bed and more sleep. Was woken by the nurses as it was chemo time, well tbh it was the stuff to prepare me for the chemo and then it was the real chemo time. Before it started I was sick for the first time, I hate being sick, I have a phobia of being sick. I knew I was going to be as well, I took my pills on an empty stomach and then had some dissolved paracetamol. Paracetamol and me have never been best mates. So drank it and then wham bam up it all came. The pills I had just taken were all floating like little shipping lane buoys. Felt really grotty and the stuff that was being fed into me was so not helping. Penny came back to do more filming for Look North, she wanted to film the chemo and radiotherapy. She got a grotty Lauren to start with as I was feeling really sleepy and rotten, and had got a temperature of well over 38. But thankfully it did begin to wear off as paracetamol was given to me through my line, I wasnt sick either! I look bit like a robot as now I have a couple more things sticking into me. A couple of syringe drivers to give them their correct name, one in my tummy and one in my arm. It comes with a satnav type box thing which is a pain as its another thing to carry when needing to do those necessary things. Oh I nearly forgot, I dropped the end of my hickman line into my wee wee! Dont ask! I am a clutz! So anyway after plenty of filming in the room it was off to radiotherapy with camera in tow. You should see the way some people scatter at the sight of the camera. What do they have to hide eh! And now I am pretty much done for the day, aint even been on the net until now and havent even had the tv on once. Maybe I should switch it on now and see if I can get a picture that doesnt appear to be possessed by aliens!!!

Where Did Today Go

Ah yes I slept for most of it, best get used to it I guess. Time goes quicker anyhow.
Had a pretty lousy night, didnt sleep well, got a temperature. Then up at the crack of dawn for more radiotherapy. Which made me tired again lol.
Karen the transplant coordinator came to check on me as she had seen I was a bit down in the dumps yesterday, which was very sweet of her. After that well I was gone into sleepyworld. Missed them fixing my blind but I can now keep the outside world out when I want. Missed Carrie come down to try and sort out the laptop that the Teenage Cancer Ward have supplied. It needs all the adobe flash thingies updated but needs an admin username and password to do so. Which still remains a mystery so no watching programmes or doing my farmville for the time being until we sort that. The afternoon came and went with me sleeping through most of it. Just had my second lot of radiotherapy, I took my own music again and the guy doing the radiotherapy even remembered exactly what track I had got upto this morning and started it in exactly the right place for me. Thoughtfulness like that makes me happy. It might sound silly for something like that to mean a lot to me but it really does give me a boost when people make that extra effort just for my benefit.
So now I am back in my room and feel really really weak but have grabbed a shower as I am not wired up to any fluids for once so I havent got to drag the drip stand round with me. I must try and get some food down me this evening as I havent really been eating. I keep feeling icky everytime they bring me hot food, the smell ewwwwww. Anyway am going to finish up now as my tv signal is playing up again and I wanna watch my soaps x

Feeling Sleepy

Firstly thank you very much to all those who have commented since my appearance on Look North. It really does help to hear and read supportive words both from friends and family and complete strangers. I hope that in my own little way I can also provide some sort of support to those of you who are going through similar experiences. If any of you want to contact me further feel free to add me on facebook, Dizzy Lizzy is what I am under. But if anyone has any problems finding me let me know.
Moving swiftly on, I am feeling sooooooo tired.
Saturday lunchtime the chemo started. I wasnt sick but the main reactions to it were, it made my eyes itch and my nose sting. Also my body just ached. On Sunday it was same again as I had another lot of chemo. They also give a variety of other things through the hickman line to help combat any side effects of the chemo. Dont want any parts like my kidneys to pack up after all.
Today I had my first lot of radiotherapy, it felt like i was in a tattoo parlour with all the noise. Before they started it, it was like being at laser quest with all the green beams. Then I lay in the dark and listened to my own CDs that I took in. The music for my test dose, yea well best not say what I thought of that. Now back in my bed and feel sick, have a metal taste in my mouth and very tired. And to top it all off I have just had some long stockings put on my feet and legs to stop blood clots. Dont think you will be seeing them on the catwalks. I am going to have a little kip now and send another pillow case pink lol

On Look North tonight on BBC 1 between 6.30-7.00PM...

Well the title says it all... i am very excited to watch myself on tv after all the filming earlier on today. Penny Bustin and Nick the camera man were both lovely. I don't think the nurses enjoyed them being here as much as i did lol. I start my cocktails in the morning and i am very sad that it wont have the perks that cocktails usually have. It will have the after effects of too much alcohol though lol. I am to expect being sick, runny stools, mouth ulcers and loads of other nasty things. I am still in loads of pain with my hickman line but just discovered i can have morphine every 2 hours (not 6 hours like i thought). Just eaten all my tea and i am still hungry! Carrie my youth worker sorted me some internet out so i will be online throughout the transplant now whoop whoop! Gonna play on cooking mama now before my big debut on the tv lol.

The Waiting Is Over

So here I am starting my 2nd night in hospital. It seems weird to finally be writing my first blog from my hospital bed that is effectively going to be my home for the next few weeks.
It had been a busy few days trying to get things sorted before I came in, and theres still one or two loose ends that will have to be completed from inside or done through my family and friends.
I had a phone call yesterday (Wednesday) around 4pm saying I had to go into the hospital that evening instead of the original plan of Thursday morning. As you can imagine it was hard to cope with, having mentally prepared for my entry, only to find it altered at the last minute. My Mum had also organised a tea party for my last evening and rather than chilling and enjoying my last night of freedom, I was suddenly rushed. I literally stopped at my own party for barely an hour and then it was gather my stuff up from the hotel I should have been staying in and begin the journey to hospital. There had been tears from various people over the last few days and hours but I hadnt cried until the journey, the ability to hide my fears finally faltered. We got to the ward and were shown my room and soon the numerous bags were spreadeagled over the floor. As hard as I tried to keep my spirits up, I felt awful. We unpacked a fair amount and attempted to settle in, albeit unsuccessfuly. Tom stayed with me all night but I had a pretty sleepless night. Agh the mattress is so uncomfortable. This morning once the day staff came on duty things finally began clicking into place. Karen came to see me and this reassured me greatly and as the morning went on I slowly began to settle into my new environment. In the early afternoon I was taken to theatre to have my hickman line put in, i was more concerned about when i could have something to eat rather than the actual procedure lol. I am in absolute agony as the line goes from neck to my chest so i cant move my neck at the moment. It really hurts when i laugh and when i swallow. I am very excited about Penny Bustin coming in the morning. I don't know if she is starting filming or anything but it will just be nice to finally meet her. I don't start my treatments til satday so i am hoping i can sneak a couple of takeaways in before then. Gonna get back to reading my magazines and watching i'm a celeb.

Had a nice relaxing weekend

The spa was amazing. The staff were really nice and i managed to relax for a few hours after my facial. Tom had a facial and a massage which he enjoyed. He is such a woman lol. I am moving into my new house this week and then moving into hospital for a short while. I am going to have so much to do this week and not enough time to do it all. I think i am going to avoid wilkinsons and asda online shopping after the stuff i have recieved this week is a bit different to what i ordered. I have a smashed up washing basket, a turquoise xmas tree instead of a pink one and a single duvet instead of a double one so not a lot wrong lol. I might not post on here much til wed or thurs as i am very busy this week but after thurs i will be posting everyday as long as i have internet in hospital. I have to provide my own internet so i am a bit stressed about what dongle to get etc but i think i have sorted everything else. I am dyeing my hair pink on wed teatime at my tea party so i will try and film that lol. I raised over £500 for Clic Sergeant so thankyou everyone that donated.

HERE IS THE LINK TO LISTEN TO ME LIVE ON BBC RADIO SUFFOLK AT 11.10AM

http://www.bbc.co.uk/iplayer/console/bbc_radio_suffolk

Away at a spa for a couple of nights

Having a lovely time at the hotel, looking forward to my facial at 1.30 and then there is a jazz band playing at the hotel tonight. I was saying to Tom the other day how i would love to go to a jazz bar before the transplant so i am made up. Tom has had a shave for his facial as it would have bin like sand paper for the poor woman's hands later lol. My only complaint about the place is the slowness of the internet and the quality of the breakfast this morning but your always going to find something wrong where ever you go i guess. It is just what i needed to relax though i just hope the facial is relaxing later on. I had some champagne last night and it made me discover how dodgy one of my ugg boots has gone. I am going to have to find a ugg subsitute today so i am no longer walking on my ankle lol.
I am on the BBC Radio Suffolk at 11.10AM so please listen if you can i will try and put a link up if i can.

Had the bestest news ever!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The donor passed the medical which means the transplant will go ahead next week. I feel so so happy about this. However the radiotherapy  test dose i had at teatime has made me really ill so i couldn't crack open the champers when i got home : ( But never mind it will have done my liver good lol. Just chilling in bed with a can of IRN BRU and a tin of choccies to celerbrate instead. I will go in for my BMT on the 18th of November and will be in for about 6 weeks. The radiotherapy will be twice a day for 3 days and then once a day for 2 days. It is gonna be horrific to be honest and i will most likely get caterats (however you spell it). I will have to have a very healthy lifestyle after the transplant so i don't have a heart attack or get lung disease and my IQ may be affected as well. Not a lot of bad points huh. I would be suprised if my IQ can get any worst lol. I also read that a risk when having the hickman line inserted is a punctered lung but they do a x ray a few hours after insertion to check lol. The plus of all this is a cancer free life though if it does work so i am willing to suffer for a bit if it means a nice new life for me. I am allowed to take my own music with me when i go to radiotherapy so hopefully that will distract me, whilst i am laid in my moulded bean bag in the fetal position hah crazy stuff but very clever. I am goign to try and get some sleep now so Goodnight all.

Had news but it isn't good or bad yet...

Just spoke to Leeds and basically it would seem that there is a problem with the donor. They couldn't tell me why what or anything because of confidentially. Something though has come up on the medical which is having to be queried for what ever reason and i will hopefully know in the morning whether the donor is being used or not. I feel devastated to be honest. I feel like someone has ripped all my organs out and stamped on them. The chances of a medical not passing are very small yet for me it has happened 3 times potentially. I just don't think i can be positive anymore. If this donor can't be used how long am i going to have to wait for another one? How long before my leukaemia is terminal? I wouldn't sleep tonight if it wasn't for sleeping tablets lol. Anyway i am still going to go out for a meal and i am still going to drink champagne as life is too short and i think i know that better than anyone. I can't wait for a life that isn't controlled by cancer but i can't help feel that it is never gonna happen now. I will try my best to be positive and laugh things off but it is blooming hard.

Dizzy Lizzy is fundraising for CLIC Sargent

Dizzy Lizzy is fundraising for CLIC Sargent

Pink hair for Clic Sergeant!

I have decided that i am going to dye my hair pink to try and raise money for Clic Sergeant. I thought that it would be a good way to show my appreciation for everything that they have done. It will also give me a groovy hair style while i am in hospital lol. I have just ordered the hair dye now online so it should arrive before the BMT i hope. I dyed my hair earlier today and it has gone more ginger than blonde oops lol. I am going to bleach it tomorrow or make it lighter so that the pink will take. I can't believe wagner has got through wot a waste of my fiver lol. Can everyone please pray that i get good news about the donor tomorrow and please sponsor if you have a spare quid thank you(link is below) xx


http://www.justgiving.com/Lauren-Hards

Off to a bonfire soon...

I am very excited to see the 2,000 pound firework display in about half hour. I am even more excited though about Monday. I will find out on Monday whether the donor has passed the medical so i can't wait for Monday to come around as i am hoping it is good news. I have just being adjusting to not been in hospital anymore. I miss not having to cook lol. If i recieve good news on Monday then my radiotherapy test dose will go ahead on tuesday night as they cannot give a test dose if the transplant is post poned as it is very dangerous. It is less than 2 weeks til transplant now so i need to get a wiggle on with moving my stuff in to my new home. I have ordered all the furniture and it will all arrive next week apart from the bed which will take over a month. This is rather annoying as it is the most important item really but at least i can kip on the sofa. I hope i get back from the bonfire in time for x factor as i look forward to it everyweek lol. I am feeling really excited about the transplant even though the treatments are going to be horrific. I am also s**t scared as i could die but i am focusing on the positives for once in my life lol. I am confident that i am going to kick the cancers butt! Gotta go now but will hopefully be typing good news on monday!!

Bored Bored Bored...

Had the ultrasound this morning and as suspected my spleen is a bit enlarged so that would suggest why i have pain in my tummy. I slept all night again and woke up just in time to get ready before my scan. Tom was waiting in by my bed when i woke up so i thought i was dreaming at first lol. I have played pool today and watched some dvds but i can't get rid of my boredom. I can't get rid of my sickness which is starting to get my nerves now as i keep having sicky burps lol. I am assuming that i am going to be let out tonight when they have got my tablets from pharmacy. I am getting the keys to my new house this week so will be living up north again after the transplant as need to be close to hospital afterwards. It will be very strange living on my own again. I will have to get one of those giant teddys or a goldfish or a goldfish for company lol. I will have the keys to the house on friday, so will have just under 2 weeks to move in. I will have to try and look at some furniture stores tomorrow before i go home. I think moving house is stressful enough without having my circumstances on top of it. I am so nervous about monday as that is when i will recieve good or bad news about the donor. If it is good news then i will  l be having champagne celerbrate me thinks...

Finally had CT scan done...

MY NEW EARRINGS

Only waited all weekend and all of today for my CT scan and it was all over in 2 mins. How disappointing lol. If the results come back fine i will be out tomorrow night. Apparently the scan will have covered my tummy as well but i am not convinced and i am now worried that i will be kept longer so that they can do a ultra sound. We will see though as i am due some good luck me thinks. The morphine is working a treat. I am sleeping all through the night and my pain is very low. I made some jewellery earlier with Carrie my youth worker so i have a bracelet for Evie. Sorry Mum but i lost concentration after that so will make you a mug tomorrow instead. I spent well over an hour making myself some Pat Butcher earings lol. Penny Bustin has let me know they are going to film the transplant as long as they get permission from St James's which they are awaiting at the moment. I hope that tehy get the permission soon. I have just had some Mr Porky pork scratchings yum yum and will be having a fish cake and mushy peas hospital meal soon. It can't get any better can it...lol. I have been moved to a bay so i am missing not having a tv now but i will make do with farmville. I have the bay to myself thank goodness as i am full of wind today. Wait i am everyday lol i wake myslef up sometimes they are that loud! Gonna chilax(don't know if that is how you spell it) before my tea and make the most of the peace before Evie arrives me thinks. She is actually really quiet in hospitals as she doesn't like them.
Incase you don't know what i am on about when i said CT scan it is a scan of my head to check that my eyes are ok as i have had a lot of pain in that area. I have no idea what CT means so i just call head scan instead.