Going home tomorrow...all been well

After another pucky start to the morning yesterday i perked up a for a little bit. Tom cooked a nice roast for lunch which i really enjoyed. I was getting fed up of living off sandwiches lol. When we got back to hospital in the evening i was in agony with my stomach...maybe it was Tom's cooking hah only joking babes. I couldnt take my meds and had to go straight to bed. I slept badly for the third night in a row as i am having withdrawl symptoms from my sleeping tablets. I will just have to put up with it until my body gets back in to a natural sleep pattern again. I wasn't sick this morning so that was a good start to the day, and Dr Cook was his lovely self when he came to see me. He said i have done really well and that i will be getting kicked out in the morning. I will go home on oral treatment for the cmv and will return to the ward monday for my cmv levels checking. I will then go to clinic on the wednesday for my bloods doing. Dr Cook reminded me that i am no longer under Dr Smith's care which is the only bad news of the day lol. Unless the CMV level is really high tonight then i will be out at some point tomorrow. I just want to add how amazing Tom has been these last 6 weeks, he hasn't seen any of his family over christmas and has spent a fortune to be at the hospital night and day with me so Tom we will spend next xmas with your family and i will look after you as much as i can next year, love me x x

Has had a relaxing day at the mint hotel with Tom...

Thanks to the growth stimulation injection i had yesterday my neuts were above 8 this morning (they had dropped to 1.5 yesterday) so that meant i could be released for the day again. It was snowing at the hospital so Tom asked the nurses if he could take me to the hotel in Leeds so that if the weather got worst we wouldn't be far away. They said no problem as long as i stayed away from people and wrapped up warm. I have spent most of the day in bed as i forgot how comfy they are compared to the hospital ones and tbh my body needed a good rest after having a busy weekend. I have had a lovely tea which has given me maybe just enough energy to get a bath before heading back to my overnight accomadation. I think we may come back here again tomorrow if the weathers the same cos it is a 5 min drive from hospital and the room has 2 tvs which is more than i have at home lol. Before i forget the CMV is still positive so will continue with day release until i get a negative (i hope on thursday) and you never know they might get rid of me on new years eve. I dont think i will stay up til midnight so i aint bothered where i am or what  i am doing as long as i am snuggled up with Tom and got some good music on : )

has had a merry little xmas afterall...

I had a wonderful day yesterday as i was allowed home for a few hours after my xmas dinner. I was like a big kid on xmas eve getting over excited which did not please Tom lol. I recieved a phone call from my favourtie comedian Bill Bailey on xmas eve so whoever sent him the letter about me thank you so much for making my xmas so special. We talked about allsorts of stuff for about 10 minutes and the nurses couldn't believe it was really him lol. Thank you Bill for putting a huge smile on my face. I woke up at 4am on xmas day but managed to go back to sleep til 7 and was greeted by a grumpy Tom cos he had a headache and a cold sore, boo hoo! I slowly opened my presents and did half then and the other half a bit later on. I got loads of nice stuff and i deffo dont need any socks or slipper socks for my birthday lol. The xmas dinner was a disappointment i have to be honest, and my body would agree with that staement. I have had a lovely homemade dinner today though so that has made up for it. I absolutly loved having my bath today i could have stayed in for hours if my skin wasn't so sensitive to the heat which cut my bathtime short. I have borrowed a coat off my nan as Tom's coat made me look like paddington bear lol. I will be heading back to the ward shortly but as long as my neuts are ok again tomorrow, i can cope with bedtimes been at hospital for now.

What a week...

Well i thought i was going to be having myself a merry little xmas at home with Tom at the beginning of the week but what a difference a day makes. I had a temp Mon night after i was told i may be kicked out for good at the end of the week. This was providing my sickness was controlled and i was taking all my meds by mouth. However, Tues i found out the CMV was back and meant business as this time it had risen from 6,000 to 42,000! I spent the day been a moody cow as  i am sure Tom will agree as the nicest thing i said to him was that i would head butt him lol. I think i have overdosed on Shameless. Today i have a glisten back in my eye and do actually feel a bit brighter considering my counts have dropped again. My neuts have dropped from 0.87 to 0.55 which is a pain cos i cant go anywhere til they are above 1 grrrr. I have got back in the xmas spirit after having presents brought in from my Dad and Aunty Hannah. I was worried when Tom had more than me last week but i have the most now so that has cheered me up. Had a go on the wii for the frst time since coming in and i really enjoyed it. I am looking forward to my xmas dinner as it is a real turkey and not micro meals. I dont think i have ever been so excited about a meal but i guess that is cos we take things for granted. I have recieved lots of lovely cards so thankyou everyone that has sent them, they have found there way ok. The dietician is very pleased with how much i am managing to eat and it seems to have helped my tummy recover too. It is a good thing i put 5 stone on before i came in cos i would weigh 6 stone now if i hadnt have. I am going to focus on been out for my birthday so i can celerbrate with some shloer and a nice soak in the bath.

Feeling Low...

Just been on Look North and you may have seen i aint looking too well at the moment. I think the hardest part is that it has been 4 weeks since i came into hospital and i am at my worst now. I didn't feel this ill with the TBI and chemo, which i am finding very annoying. I saw Dr Cook this afternoon and he feels that the sickness is down to a reflux problem. My tummy is basically full of acid so everytime i move that is why i am sick. My swab results showed that i have a cold so at least it aint flu but it feels like it is. The body ache is because my magnesium and potassium are low so just having some through my line now. The CMV virus has come back negative so hopefully my counts will flourish. My white count has doubled from 0.21 to 0.45 and my neuts have gone from 0.09 to 0.21 since yesterday which is great. My platelets are 121 so i don't need any transfusions or injections to help my counts come up. Dr Cook is happy with how i am doing and is confident the sickness will be sorted in a couple of days. I think that everything is suddenly getting to me because i left the room the other day and it is christmas next week. I am starting to feel suffocated in my four walls and i am so restless on a night time when Tom has gone. I don't know how i would have got through this without him, the things he as done for me is unbelievable. I feel so empty when he goes and scared about how i will manage to do things. I would be really happy if my counts are normal on christmas day, that would be the best prezzie.

Feeling 'hot 'hot' 'hot'...

Not been on here for so long as  have been quite ill since sunday. I started feeling really sick on Sunday and had a temp since then on and off. I am on new antibiotics and having lots of iv paracetamol which seems to be helping me feel a bit better for half an hour here and there. As you have probably guessed i have been very warm as a result of the temp but i have also been very cold as well. It is highly annoying through the night having to add and remove blankets every hour cos your body can't decide what it the hell it wants. I spent Mon and Tues curled up in bed feeling sorry for myself for the first time since i came in. Last night was a rough night i puked my guts up and had a temp and then this morning puked up a bit more. It takes all your energy not that i had much anyway. The thought of getting in the shower is like been tortured but i am gonna force myself cos well i will smell lol. I had my naso tube out on monday cos i had started eating loads over weekend and was taking my meds by mouth then i become ill again. I wont have another tube though as already had 2. Dr Cook made me laugh when he said that the naso tube was welded to my face so it needed to come out lol. I was very emotional earlier when i went for some x rays as i had forgot what it is like outside of my room. I had forgot that there are people lol. I wore a mask which made me feel safe but i doubt it did anything useful for me lol. There was some live music going on downstairs which was amazing to hear for half a minute. I had a x ray of my tummy and face done to check that there ok cos bin in pain with them. It would appear i have flu but awaiting the swab results to confirm it. I think that is all i have to report for now.

Day +15

Well this week has gone so fast i had to look at my timetable to work out what day it is in the big brother house lol. My mouth has improved loads apart from my tounge which is really hurting. Imagine when you bite your tounge that you have bit all of your tounge ouchie! I am getting on with my naso gastric tube a bit better as i dont feel as ill after my meds and i am tolerating my feeds a lot better. I have started eating again and if my tounge wasn't hurting i would have licked the plate clean at lunchtime lol. I have had my anti-rejection drug stopped for a few days as there was too much in my blood and it can be dangerous for your kidneys if nothing is done. My counts came up on thurs and then down a little yesterday. I don't know what they are today as doctor not been to see me yet but if they have come down again it is nothing to worry about at this stage. It was just reading a post about someone's bf who has all who has had similar treatments to me and had same side effects. It was very encouraging to see he went home on day +24 i can hope for the same but i know cml patients tend to be in a little bit longer. I have nearly written all my xmas cards and Tom has done a grand job sealing the envelopes so i dont paper cut myself lol. I am going to attempt my tea even if it is a bit differnt to what i ordered...

"My mouth is on fire"

I had no idea that TBI and chemo would cause such a sore mouth. Imagine your whole mouth is full of ulcers and your tounge is full of blisters and your lips have green pus coming out of them. Sounds nice eh? Well that is my mouth at the moment. Hmmm that must be why Tom hasn't been kissing me lol. I had a nose bleed yesterday so had a top up of platelets a little while ago. I had some not very good news yesterday as one of my blood results showed that i have the CMV virus. CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. For me though it is a big pain in the bum as it means the bone marrow will not start working until it has gone. This means i will have a sore mouth and low counts for longer and will be in hospital longer : (  I cant say how long it will take to go because everyone is different but they have caught it early on which is a good start. It can also come back a lot until my immune system is working properly. I have been very very upset since yesterday but it keeps me strong and sane when i come on here and read the comments pages.

Scared to go to sleep...

Had the most horrible dreams last night and couldn't wake up for ages either. I have never had such vivid dreams which i could feel the pain in and not wake up straight away. The doctor and me both think it is because i had some cyclizine(anti sickness) at midnight and it hs reacted with the morphine. I am hoping that this is the case cos i had to get the nurse to wake me up every half hour this morning cos i was so terrified. I have never had cylizine at that time before and it made me drop straight to sleep so please please no nasty dreams tonight. I also had a bit of a skin reaction earlier which is probs the cyclosporin(anti rejection drug) as it is common to get a rash with it. It aint owt serious just makes my skin burn. My mouth is at its worst as i cant eat or drink and is rated 16/18 on the score chart. I have been having all my meds and food down my naso tube. My feed had to be stopped tonight because the mucusitos is in my tummy now which meant it felt like i had someone sitting on my stomach. I will give it another go tomorrow. All i can do is try my best and the nurses cant believe how well i am doing.My hair has come out at the front cos there is some bald patches which feel very smooth but the top of my head is sore and red. I can't wait til i can eat and manage to drink something fizzy without it stinging. Just waiting for the nurse to come cos machine is bing bonging now.

First feed through my tube tonight and i am so nervous...

Firstly if anyone tuned in to watch me on look north tonight i appologise but it had to be postponed til Mon nite due to the snow. How dare the snow be more interesting than me lol. I have just put flash dance on to try and distract myself from waiting for my first naso feed. I bet your thinking i am bonkers getting so nervous when i have had chemo and radiotherapy. I would hate to be the nurse right now cos i am very scared. The new room is smaller but i have a huge bathroom which makes up for it. The tv doesn't work but the internet does so i am happy to have one until i go back into a normal room. I will be in this room until i find ot the result of the swabs and if they are negative they can't move me til another patient goes home. I think though i am going to enjoy it in here cos right now i am using the bathroom lots and this one is perfect for me and my dripstand. If the swab is positive then i will start treatments which the nurse is going to discuss if i do need them cos thery are meant to be a bit nasty. I looked at my mouth earlier and it is full of blood and cuts and like open wounds on my tounge so that explains why my liquid medicines are burning my mouth out.

Dr Smith is doing the ward rounds this week so i gave him an update of how i was today. I just explained about my mouth being the problematic side effect at the moment. He had a look and said i am keeping it very clean which made me feel a bit better. I was worried that i wasn't using the mouth washes enough but i obviously am lol. I made him lagh as well when i explained that one of my meds tasted of vomit last night. Dr Smith will be back over the weekend to check how i am getting on and that is fine by me lol.

I am going to go back to my film now and wait for my feed
tik tok tik tok....

Changing rooms...

This may be my last post for a little while as i am being moved into a special room. The reason for this is because i woke up with a few cold symptoms this morning. I have had some swabs taken so just waiting for the results to come back which could take a few days. In the meantime i have to be moved so that i cant pass the lergy onto the other patients through the air system. Hopefully the swabs will be negative as the treatment they give for colds is not pleasant to say the least. I just hope if the swabs are negative they will be able to move me back into a normal room asap cos the tv and internet doesn't work in the special rooms so wont be able to watch look north tonight now. I am feeling really low and upset now and i am so scared about my first naso gastric feed tonight. I am having some blood and platelets etc later on but have bin disconnected from the dripstand for a bit not that i can do owt now lol. please pray there is no cold and i will be in a normal room again next week x

Before and After mugshots lol...

Well i think i may be able to tell which is before and which is after lol. Thanks to Barbara for shaving my head she did a grand job. I had a rough night last night with various things happening. I had a temp so had to be stabbed so they could do some blood cultures. I had a disgusting big blood clot come out of my nose which caused me to have a panic attack with me having no platelets. I was up all night with the runs and then when i did fall asleep i kept nearly choking on my own saliva so yes i am rather grumpy today. The doctor just said i look loads better compared to two days ago and loking at the pics above i agree. I look less yellow and squinty me thinks. Tonight i will have my first naso gastric feed so i will be wired up to yet another machine grrr. I just hope i dont have the runs cos that will not be good lol. I might just wear a nappy hah!

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.

Rocking out to Pendulum and Arctic Monkeys...

I have just eaten all my hospital food for the first time ever the morphine must make it taste nice lol. I had lasagne which i don't usually eat and i loved it followed by some custard and a cig for my pudding. I feel nice and floaty from the morphine. I think it makes music sounds a lot better quality than usual as well lol. I am listening to pendulums album 'Imersion' and i have asked Tom to get Trivial Pursuit for later as long as he doesn't win. He has been undefeated since his uni days but he aint allowed to win against me lol. I feel like the words are zooming across the page lol. Sharon will be here soon hopefully with a baloon that i have requested as i have always wanted one when i am in hospital lol. I have requested a teddy bear off  Tom but he told me where to go lol. I hope Bell Amie get voted off X factor tonight. I can't have a bet this week as gambling sites are banned at hospital : ( I hope that today doesn't go too slowly but i don't think it will as the morphine makes it feel like everything i am doing is in fast forward. Can anyone sugegst anything good on the tv tonight that i can watch after X Factor?

Spending the weekend in hospital fun times...

Well well well...what a day only went for my bloods doing and i am spending the weekend here now. Well at least i get free food, tv and fit doctors lol. I am being kept in for a few tests doing and to get some morphine in my system which i am quite looking forward to at least time will fly by if i am off ma head lol. A typical Friday night for me (well used to be in the past) now i am a rite little domestic cleaning godess with a set bedtime every night. I have severe pain in all my bones especially my ribs so i will be having a ultrasound done on Monday to check out my spleen size. I am having a scan of my head done on Monday to see if they can work out what is wrong with my eyes as it is a mystery still. Got bruising like a panda but my platelets are over 700 so going on aspirin for that. The morphine will take away the bone pain which has being caused by my overactive bone marrow misbehaving itself. I also have my wisdom teeth playing up so i can add that to my bag of problems lol. I feel bloody brilliant apart from all that hah. I am just trying to get some iv anti sickness as i am adiment that is the only thing that will work. I jsut wnat to feel gorgeous for 10 mins and i will be happy. I have my tunes on and trying to read X Factor magazine could do with my Nan's magnifying glass though to be honest. Just had success with getting iv anti sickness so awaiting doctor sorting it now so i should have my 10 mins of feeling good now lol. Will update in a short while as i feel a bit boz-eyed (however you spell it)

Just seen my new baby cousin for the first time...

Awww Laizel was so cute i even had a little hold until she started crying which was the perfect time to hand her back to her mummy lol. Laizel was born on Sunday nite so  i was really nervous about holding her as she looked so fragile. 'Laizel' means God is bountiful so she has a beautiful and strong name which is what i am sure she will be. Evie was an amzing foot rest for me today lol, i would like to add that it was her idea and not mine. I am actually very nice to her...most of the time. When we argue i always manage to come down to her level i am afraid to say lol. I am really missing Tom but he is working hard at the horse sales doing what i am good at...shopping! I will be reunited with him on Friday though so not long now and i will be excited to see what horses he has bought. I jokingly said that we should set up our own horse sanctuary for ex race horses lol. I have hospital on Friday for my weekly bloods to see if the hydroxycarbamide is kicking the white cells butt! I hope so as don't think i can tolerate a even higher dose. I am not sleeping either at the moment even though i am tired all the time. It could be the night sweats i guess or just my overactive mind keeping me awake. I had a lovely day with Corinne yesterday it didn't feel like years since we had last seen each other. I had a chicken caeser salad which i didn't eat as the lettuce was all brown n manky. A member of bar staff asked if it was ok and i expalained that i couldn't eat it because of my leukaemia. He offered to replace it so i just asked for a free drink instead lol. I guess stating i had leukaemia was for something good for once lol. I can't wait to meet up with Corinne again before the transplant as we had a rite laugh.

Feeling refreshed after a good nights sleep but my mind doesn't...

Feel really happy as had a lovely nights sleep and had a lovely relaxing bath to soothe my aches and pains. I feel as though the citalopram is working already, just need my skin to behave next. I have being worrying all weekend about what will happen if the donor fails the medical and if my CML goes in to the blast phase. I am scared that if the donor fails that  i will die cos they wont find another one in time. I am also s**t scared that the transplant wont work cos i am now in the accelerated phase so it is too late to cure me. I am going out of my mind with worry and don't know what to do. The sooner i have a shrink the better as that may help me stop worrying. I know it is normal to feel like this but it doesn't make it any easier. I think i need to speak to Dr Cook about the success rate of the transplant for someone in the accelerated phase of the disease and about what happens if this donor fails the medical. How long would i have to wait for the transplant if this happend? What happens if i end up in the blast phase? I know your probably thinking don;t think about the what if's? But for me the what if's could turn out to be very real as i have had no good news for 2 years and felt like i am dying for the last 6 months.

Awake most of the night AGAIN...

Had another restless nights sleep so gave in at 6AM and turned the laptop on to play farmville like a true addict lol. I need to start going to the gym or something as i think that would help me to sleep a bit better as well. I think that the night sweats and the higher dose of chemo has irritated my skin as was itching all night and i am still red now. I wonder what i can do to help it? I set the fire alarm off last night as burnt our food which was burgers and chips. The burgers shrunk to the size of a penny and the chips were raw so i let Tom off when he didn't want to eat it lol. I am actually really good at cooking beleive it or not lol. I am sure you all want to come to tea at mine now hah. I couldn't stop laughing at strictly come dancing last night when Anne widdecombe (however you spell it,probably worked out by now spelling is not my strong point lol) was referred to as ET's Mum and a dancing hippo lmao. I thought X factor was pretty dull to be honest.There are only 3 decentr acts on it and they wont win cos all young girls will vote the boyband no doubt. I will have to create a record company for Mary and Matt lol. I am going to have a go at not setting the fire alarm off shortly when i cook lunch as my ears have only jsut recovered from last night. Congratulations to my Uncle Matt and Auntie Belinda who had a baby girl at 12.30AM this morning, i hope i get to see her this week, will let them get settled at home first. That is all for now in the land of Lauren x

Having a glass of cider and listening to 80's music can't get better than this lol ...

I think i must be allergic to the cider as developed a rash since having one sip of it lol. I have had a productive day as did some cleaning before i went to doctors as Tom has a friend staying next week for horse sales. I don't want it looking like a bachelor pad, do i! I am going to see my friend Corinne next week on my way up North as i haven't seen her in years so i am really looking forward to that. I don't fancy being at home during horse sales as  i would be very bored and wouldn't have anything to distract my mind as have no friends down here who i can see. I hope that Tom and Seb have a nice time at the sales though and don't have too much fun without me lol. I went to the doctors earlier about eyes but nothing wrong with them so i guess that is good, but why are they hurting then? I got some happy pills so hopefully they will kick in next week and i will feel invincible lol. I need to find something else to do apart from farmville otherwise i might actually enjoy bin in hospital as it will be a home away from home haha. I think i am going to ask Tom really nicely for some guitar and drums for the wii when i go into hospital as long as i dont annoy the patients lol. They can't kick me out i hope... Gonna get back to my music session now but just want to say how touched i was by Hannah Kelly's message she left on here, it made me cry when i read it. Thank you Hannah and everyone that has left such heart felt messages i had no idea that so many people really do care x

Received a exciting phone call...

I would like to say a HUGE HUGE THANKYOU to Frank Jeffers for giving me Penny Bustin's contact details. I sent her an email with all the info about the blog and explained how much i wanted to raise bone marrow awareness and continue Adrian Sudbury's campaign work. I recieved a phone call from Penny at teatime saying that they are interested in my story and would like to film the transplant so they can follow my progress. Penny is now going to speak to Andy at Leeds the media guy to see what they can and cannot film etc etc. I cannot believe that this has happend so thankyou Frank. It is going to be amazing if it is filmed professionaly so thankyou Penny for getting in touch and her kind words on the phone.

I woke up in a frightful mood this morning as Tom is well aware of as he was at the recieving end of it. I don't think it helped when i did some more research on CML and read that if you are in the accelerated phase of the disease then the transplant is less effective than when you are in the chronic stage. I know i said that i was sort of expecting yesterday to be bad news but i had kinda forgot about the BMB result until i got there. I thought that i had recieved all the bad news i could possibly recieve but i was wrong. I am finding it very hard to be positive now as i can't stop thinking about dying and feel that i need to plan my funeral etc. I just don't know how to not think about dying as it is worst when i am trying to go to sleep. I get myself in a panic that i am not going to wake up again. It is really scary and someone my age shouldn't be thinking about stuff like this, it is so unfair! I have made an appointment with my GP tomorrow so i can get soem happy pills as i don't want to be on sleeping tablets anymore as i want to make the most of my last few weeks of freedom and not sleep my way through them lol. I hope the happy pills sort me out and i hope that the eye ache is nothing serious. I am worried that i am having bleeding behind my eyes like i have had in the past so lets hope i wrong for once lol.

More Bad News!

Went to St James's for my bloods doing today and Dr Smith explained my bone marrow result. The result wasn't good news but i had sort of been expecting it. This didn't make it any easier to hear but at least i was prepared for it so didn't cry in front of Dr Smith lol. The Chronic Myeloid Leukaemia is now in the accelerated stage of the disease which means the transplant cannot be delayed anymore as my leukaemia is no longer stable as it has been for 2 years. What does all this mean you are probably thinking? I will now explain in the easiest way possible and i appologise for spelling mistakes but a bit upset now i am talking about it.

CMLhas 3 stages of the disease. I was diagnosed in the 'chronic' stage which usually stays stable for about 4 years before it changes. During the 'chronic' stage blood counts are steady and you can live a normal life. When it to moves the accelerated stage the bone marrow will start producing lots of immature cells and you will have 15% Basophils present in your BMB. I have 14% Basophils present so from that and the amount of immature blood cells in my blood that is why Dr Smith can see that the change to the accelerated phase has taken place. The night sweats and bone pain i have being experiencing is all related to the 'accelerated' phase. My white count has gone up to 58 since the other week which shows that the drugs are having a  lesser effect on the CML and the counts are now harder to control and will fluctuate more due to the leukaemia becoming more active. The transformation can last 6-24 months before going in to the blast phase. In the blast phase you have about 6 months to live. CML can also go from the'chronic' phase straight to the 'blast phase'.
I am hopeful that i will not experience the blast phase as i hope the donor passes the medical and i can get back on the road to success. I am going now so i can watch Jaws. A nice happy film to cheer me up lol

Went to the CML support group in my new panda hat lol

Had a nice time at the CML support group last night, it was very very busy! It was the biggest one yet which was great. Dr Smith did an amazing talk as usual and used his favourite word 'Tickety Boo' lol. I remember when he said that everything will turn out 'tickety boo' for me, i hope it still does. I turned up in my all in one scarf hat that has a panda face and ears stitched on it. I invested in this accessorie yesterday for a mere bargain of £30! I thought it would be a great way of keeping my head warm after chemo and also a great way to embaress Tom when we go places lol. I was really sad Sharon couldn't make the support group as she always makes me laugh when i see her and i aint seen her since the last meeting. I will arrange something so i can see her before transplant though so we can have a natter. I have had a nice relaxing day as my eyes are in agony for some unknown reason. I will go back to specsavers or get Dr Smith to check they are ok on Wed. I have had little bleeds at the back of my eyes before so it is a little worry that it could be that again. I need to invest in some sunglasses lol. Going to go get Evie from school soon and eat lots of popcorn when we get back and watch Hannah Montanna, which i am ashamed to stay but find really funny to watch.
My cold seems to be back so not imopressed with that as it makes me so sleepy which aint a good thing when you are entertaining Evie lol. I am going to request a spleen scan on Wed as it is all very well Doctors saying 'it is enlarged'. They don't then get a ruler out and measure it for me lol. I am concerned that it is causing problems with my stomach again. I will ask for a eye test as well while i am there and i think that is all for this week hah. Got to go as Mum rushing me now to get a move on so i am ready to get Evie Laters x

I may be a bit more poorly than usual this week but that dint stop me going to shop for cigs today lol

I made sure i got some cigs earlier and i haven't even had one yet. I guess that is a good thing though lol. I think it is cos i am lazy and can't be bothered going outside to have one lol. I think that i am going to have to go back on my anti-depressants cos started feeling stuff i don't want to. The tablets obviously made me numb. Bring on the happy pills! I don't feel like i have a urine infection anymore so just the cold to shake off next. Got Church for the first time in forever tomorrow, i would go more often if it wasn't 3 hours away lol. Going to have some healing oils on my head during pray. I don't think it will get rid of the cancer but it may help get rid of the cold hopefully ; )
Looking forward to my CML support group on Monday night at 7PM at St James Leeds (incase anyone on here with CML wants to go). It will be really nice to see Sharon and the gang before the transplant. Dr Smith is talking at this one so that is a bonus lol. I can't believe how close it is to xmas, i love the lights at night time and putting decorations up. I will probs miss out on that this year but as long as i have good health next xmas it is a sacrifice i am willing to make. I think apart from good health i would like Aragon (from Lord Of The Rings) or Sean Bean for xmas lol. A trip to Euro Disney again would be amazing or see a show in London. Dreams aside i would love lots of DVD'S and WII games to keep me occupied whilst i am in hospital, and a giant teddy bear bigger than me cos always wanted one since i was a kid lol.

Gonna get back to X Factor now, not that any of the acts have particuarly stood out to me so far. Mary will be brill when she performs that i am sure of. Everytime i hear her sing she makes me wanna cry so i hope she wins so that i can listen to her album when i am in hospital.

A bit of hope...

Had a call from Karen my transplant co-ordinater today. I have a new transplant date which is the 26th November, this means i will go into hospital on the 18th of November for my hickman line fitting, and then start my total body irradiation for a week and spend the next 6 weeks in isolation. I am not going to think about the transplant taking place until i get the donor clearance on the 8th November. I am not strong enough for any more bad news so please please pray or keep your fingers crossed that it really is third time lucky. Don't get me wrong i want to get all excited that i have a date and a donor but i just can't set myself up for another fall right now. Well at least i don't have to decide where i am going to spend xmas this year as i will be in hospital lol. I hope santa knows where to find me though, othawise i will be very upset lol.

Just watched a rite upsetting film called The Last Song with Miley Cyrus in (Tom really fancies her) and i don't know if my nose is all snotty from that or my man flu. I have watched 2 kids films today so you can now see how boring my life really is. Furry Vegeance was the first film and i found that really funny which aint good for someone my age surely lol. Haven't had a cig since sometime yesterday but think i'm gonna have one now just cos i am bored basically. I actually don't need to smoke as i tend to be just a evening smoker (2 before bed) but if i didn't have those cigs tonight i would get really stressed. I always have the perfect answer as well if anyone questions why i am smoking. I say why not it isn't like i am going to get cancer twice is it? I will have my last cig the day i go in for the transplant as there is no going back as i can't leave my room lol.
Right gonna go now but if anyone wants to ask owt just comment on here or facebook.

Just want to say thankyou to my friend Lisa Stones who has just signed up to be a bone marrow donor on the anthony nolan site.www.anthonynolan.org follow in Lisa's footsteps and SAVE A LIFE!!!

Anthony Nolan Launches Saliva Testing | Anthony Nolan

Anthony Nolan Launches Saliva Testing Anthony Nolan

Thank you to James Hazell for having me on his show today

I don't know how i did but will listen to myself shortly to see how i sounded. Thank you for the kind comments i have recieved off family so far, keep them coming as it is nice to hear from people even if i don't know you.
I am just going to re-explain my knowledge of how to become a donor as it will be easier for everyone to access if it is the first post of the day. Right so to go on the anthony nolan register (www.anthonynolan.org) you send a saliva sample to begin with, or the next time you give blood then ask the unit to also put you on the bone marrow register. 1 in 1,000 people will be asked to be a donor so i think it is worth giving that saliva sample as it is pain free and you may not be needed for another 20 years. To donote the stem cells if you are requested to be a donor, can be done in 2 ways (whichever you choose) Blood- you will have injections a week prior to donating. This is to get your blood producing more cells than you normally would. When you donate the stem cells you are hooked up to a machine for about 4 hours which seperates the stem cells and puts your blood back through your other arm. I have had a similar procedure done to seperate all my white cells when i was producing to many. I found it very boring as i couldn't move my arms but wasn't in any pain afterwards and was fine the next day. Bone- You will be under general anasthetic for this, so that is the risk like with any other procedure done under anasthetic. They will take the stem cells from usually 6 different parts of the hip bone and you will be sore for about 5 days after the procedure. I have given 3 bone marrow samples before and it is a simialr procedure apart from i was awake. I was having 50x less taken than a donor would and i only had 1 punture site on my hip. I was sore for a few days but nothing serious. I will be posting the footage of the sample i had taken, so that it may help people understand a bit more about the procedures involved for bone marrow donors. I hope to encourage more people to join the bone marrow register in the future.

Just a reminder about radio on wed ..

Just to say again that i will be on BBC Radio Suffolk at 10.15 am on wed, i will be a celeb soon lol. I really hope that i do well with my campaigning that will hopefully take off soon after radio appearances and being on the BBC website, i have now had nearly 3,000 page views on here which i can't believe. I didn't think anyone would read this blog and was hesitant about doing it to begin with. I am really glad i did though as it seems to help me and hopefully help everyone that reads it.
Also my Aunty and Great Gran are on BBC Breakfast show in the morning between 7 and 8 am if anyone is up at that time you can see them on BBC 1, i cant wait to see what my Grandma Lil says lol. She is deffo one of the funniest people i know. I can't wait to see her at my church service on Sunday night as long as she behaves herself and doesn't nod off half way through. I have decided to give flamingo land a miss this week as i have quite a hectic week already. I can always go next summer, but i think i may go to cannon hall farm on Mon instead as haven't been for years. If you haven't noticed already i am a massive animal lover. I can't wait to get my own horse when i am better. I have so much to look forward to and work towards after the transplant so i just need to remain positive and be confident that the disease will not get worst before December/January. I think that is what worries me is it progressing to the next stage and not making it to the transplant with me already having it at least 2 years. I know i am in good hands though and i think i am coping with the challenge alright. I have accepted that i may die but i have also accepted that this could be a chance of a whole new life without the c word in it anymore. When that day comes it will be amazing and very weird as well.

Got The Lergie ERRGGH!

I have been in bed most of weekend as felt shocking. I thought cancer was bad enough lol. Had a ordinary, boring, cold. Felt really ill and had no energy. I am sure Tom will want me feeling better soon so he doesn't have to bring me things all the time and do all the cooking. I went to see Helen on Friday to give her a copy of the BMB i had done last week and she will get in touch when she has managed to make it shorter so i can post it in here. Helen had the lergie when i saw her, so i am going to blame her for giving it to me to take home for the weekend. Only Joking Helen! Helen thinks i am going to be the new face of a campaign for more bone marrow donors, it will be interesting to see if that happens.

I watched X Factor last night and gees were some of the acts crap. I didn't like nicolo or bell amie, they were out of tune for a start. I sound better when i sing on the wii and i move about quite well too so i hope that one of them goes tonight. Espically since me n Tom have put a bet on Bell Amie to get voted off at 14-1 lol. I am looking forward to my tea as i haven't eaten anything today which aint like me.
My hip has been a bit sore but nothing i can't cope with as i have quite a strong pain threshold and haven't needed tramadol for 2 days. I want to wish Sharon Taylor from my CML support group all the best on Wednesday as she is having her 3rd BMB done like me. I hope it goes well like my did hun, will be thinking if you. I want to thank Helen Burchell at BBC Cambridge for putting up with me since my radio interview and for all the time and effort she has taken on my story.
I think that is all for now. Just a reminder that i am on BBC Radio Suffolk on Wednesday 13th October at 10.15 AM so listen if you can online.

Bye for now...

Hospital yesterday

Hospital went ok yesterday, still had to wait 2 hours even though i had my bloods done in advance as  i was told i would have to wait less then. My white count had doubled to 16 so my doseof hydroxycarbamide has been increased by 500mg. I had a chat with Karen as she was around when i got to there. Karen explained that the original donor is going to be used. This is a lady from the UK (not America like i have stated in previous posts). This means the transplant will take place December at the earliest as we have got to wait for the all clear on her malaria tests etc. Karen said that i am very strong and that it's a shame that i don't even realise how well i am coping with everything. I have no confidence so i have no believe in myself and i am very hard on myself all the time. I don't see myself as strong and coping well with everything so i find it hard to believe people when they tell me this lol.
Dr Smith was great as usual lol. He answered my questions for me and was very reassuring and i think hearing his opinion helped me make up my mind on a few things. He explained that if i didn't have radiotherapy then more chemo is used. This is then more dangerous for your liver and the cancer might not be totally wiped out. Dr Smith said that from his point of view he didn't see any risks to my health by the transplant being postponed until Decmeber or Januray. If the recent bone marrow biopsy showed any signs of the cancer getting worst then obviously the transplant wouldn't be able to wait and a different plan would be used.

I will go back in 2 weeks for my bloods doing and probably have a catch up with Karen. I am also going to the cml support group on the 18th of Ocotber and it is meant to be the biggest one yet so it hsould be a good night. I have spent all day in bed as not feeling very well, probably because of Monday to be honest. I think i am getting used to the fact that the transplant is not going to be until December/January as well now i have had  a bit of time ot come to terms with it. I am feeling confident about my CML staying in the chronic phase until the transplant and i am just going to try and occupy my mind until i get another date as that is all i can do for now.

Feeling anxious about what hospital may bring tomorrow

Had a rite laugh at ma Grandma Lillian's today, everything she says has me in stiches. She is coming to my church service on the 17th October so i hope she behaves herself lol. She rang to find out how long i was going to be as she had gone to the shop for some milk on her zimmer frame and had left her bag at home. When me and Elaine arrived she was stood waiting on the balcony for us so we went in with her and she had milk in the fridge all along. I will let her off though as she does have a bit of dementia and i may do the same when i am older .
After a nice long catch up with her we went to see Degas and Monet (my cousin's) and i played them a recording of my radio interview, which they were very impressed with. We smoked loads of ciggies before i went back to my Auntie Elaine's, where i am now snuggled up in bed having a think about tomorrow.

I have wrote a list of questions that i am going to ask Dr Smith or Dr Cook depending on which one i see. I am going to ask about what would be the down side to not having as much or no radiotherapy at all, if i don't have it then solves the issue with the transplant with the 2nd donor(and i would not be infertile either).
I want to know if i could use the 1st donor before she is out of the malria free incubation period.
Lastly i want to know about the new drug 'ponatinib' which is being trailed at Hammersmith in January for my type of bone marrow mutation. if the transplant hasn't taken place by then would it be worth trailing the drug to see if i have a response. This would mean i would not need a transplant anymore and would just take a tablet everyday rest of my life.

I am hoping i sleep better tonight as there is no Evie to karate kick me and i have taken my sleeping tablet. Will update tomorrow, hopefully with some good news!

Lincoln today! Taking a walking stick as i am walking a bit weird

Going to Lincoln in a bit to see family, staying just one night cos got hospital tomorrow. I am still very sore today and it didn't help that Evie karate kicked me in her sleep. It's a good job she is so cute and sweet otherwise i might have done it back lol. Only joking. I have managed to step in the plastering outside as my Mum's house is having some work done on it but the builder was very nice and cleaned them for me.
I am going to see my friend Helen at BBC this week to see if we can edit the footage of the bone marrow biopsy so hopefully will have it posted on here or facebook by end of week. I am looking forward to hospital tomorrow as it is the bestest doctor ever  i am seeing. I am hoping that they may know a bit more about the transplant as well, i am going to ask about the risks if i don't have radiotherapy and find out why they wont do radiotherapy on a weekend.
I am now on Radio BBC Suffolk at 10.15am on Wednesday 13th October which is very exciting and i hope i don't sound as nervous as last time. I am feeling a little bit better considering how shit this last week has being and i am hoping to go to flamingo land next week as a treat as  iwant to do all the things i can before the transplant as long as i can afford to of course.
My Grandad has started doing a painting of me so it will be exciting to see that when it is finished. I think that is all i have to report for now. Laters people x x

Bone marrow biopsy video too long so can't post it

Had the bone marrow biopsy done but cna't share the video of it as it is too long. I am really annoyed as i don't know how to edit and can't show the footage now. It went well i had it done without sedation as i wanted to be brave for the film. It only took 15 mins to do and wasn't too painful. Jon filmed it and my Mum held my hand, Tom waited in the waiting area as he was pretty certain he would throw up if he watched it. The procedure i had done is similar to what a donor has done. The donor has 50x more marrow removed than me and has 6 puncture sites in the hip bone. This is why the donor is asleep for the procedure and is a bit sore for 5 days.
I hope i can sort something out so i can put the video on here as i can't have the procedure done again lol. I wish i had known the video needed to be under 10 mins to post it.
I am now going to rest and paly trivial pursuit on the wii.

Bone Marrow Biopsy Tomorrow...Uh Oh...

Not looking forward to tomorrow at all, you would think that i would be used to pain by now lol. I have had this procedure done twice all ready, the last time was probably over a year ago now. I think that it is worst the 2nd or 3rd time round because you know what is going to happen. The first time i had a bone marrow smaple taken, it was 2 days after i was diagnosed so i was living in  a parallel universe so i didn't even flinch when they did it as i had no idea what was going on. I felt numb before they even injected me with the local anasthetic. The 2nd time i had it done i went in still pissed from the night before and started moving across the table and just got myself in a right state. It didn't help that the person doing it had the personality of a baked bean and her breath stunk like a coffee machine. I hope that the team tomorrow has a sense of humour cos it definately helps to put me at ease. I think the worst part is the local anasthetic cos it stings like mad. They then use a cork screw like instrument to get the bone marrow sample. It feels like they are trying to pull your hip out of your body but it doesn't hurt cos of the anasthetic. It jsut feels bloody weird to be honest. The first time i had a sample taken i looked at it afterwards and i thought i was going to pass out. I don't know why i said 'yeah i will have a look at it' when offered. I haven't been sedated in the past as it wasn't offered to me. I have requested to be sedated tomorrow but if they let me film it then i will choose not to be as i want to be brave for the camera. I can then also talk whilst they are doing it as i can talk for England when i am nervous i come out with some rite jibberish, mind you people might think that anyway lol. I better not swear other wise i will have to put a age restriction on it lol.

I am also on BBC Radio Suffolk on Monday 11th October at around 10AM, i am becoming a celebrity now lol.

Devastated...Angry...Upset...are a few of the things i am feeling right now

Was having a great time on holiday. Went Pony trekking twice and then had a ride on a grey horse called smartie at the place i was staying. It didn't feel like 5 years since i had being on a horse and i loved it. I want to try and do it more as long as i don't over do it as i can barely walk now due to the stiffness and aches.

Right then now for the gritty nitty side of stuff. The Bone Marrow Transplant has being postponed again. The donor passed the medical but can only donate on a Monday or Tuesday. This means that there would be a 3 day gap between my last dose of radiotherapy and me recieving the donor cells. This cannot be done as it is not possible to leave a 3 day gap and they can't do radiotherapy on a weekend due to provisions. There is going to be a meeting on Monday to discuss my options. I think that they will decide to use the original donor as she will be out of the malaria danger zone in November so that would mean a 2 month delay til December. Or i choose not to have radiotherapy and hope that the chemo on its own will be enough to destroy the cancer cells.
I really don't want to have to wait til December i cannot think of anything more depressing than spending christmas and my birthday in a hopsital bed. I think it is worst this time as the donor is fine it is the fact that they wont do radiotherapy on a weekend. Do i have to die in the mean time?

HAVING A GRAND TIME APART FROM THE FLIES IN THE COTTAGE.

We have tried gassing them and chasing them with a rolled up newspaper, but they will not be defeated!
It is lovely waking up to the horses outside,  and the little doggy Max who waits at the door for me on a morning. I had fun yesterday going for a walk and my Nan spotted a sheep with a huge pair of bollocks, she is so rude Lol. I am off to the sealife centre today at Scarborough with my Nan.

I am in quite a bit of pain at moment, so dosed up on Tramadol and feel like I am floating. I'm not sleeping very well either cos itching all the time. I hope the bed doesn't have fleas!
Bye for now.

PS I am now on the main BBC website at
http://www.bbc.co.uk/england

having a grand time on holiday apart from the flies

Off on holiday tomorrow!

First of all i hope you have all seen that i am on BBC Cambridge and BBC Suffolk website now which is fantastic. I want to say a huge thank you to Helen at BBC Cambridge who i met yesterday. I am very impressed with her memory as she quoted everything i said to herin the article(without writing it down first). I wasn't expecting her to have done the article on the site so quick , so well done and a huge thanks to Helen. I would also like to thank Jozef and Jez for having me on the show i really appreciate that. I hope that everyone who listened thought i did alright too. I just need to get on the news and in a newspaper next, i was not expecting to have achieved the radio and website side of things til next year. The support off everyone has been amazing.

I am half way through getting ready and doing farmville and talking on here. I will just quickly write that i am setting off up north in an hour, and staying at hotel tonight before i go on holiday tomorrow. I am only going to the coast but i am very excited as it is my last holiday before the BMT. I am hoping to go pony trekking while i am there and just relax. I am sad that Tom isn't going because who am i going to have to pick on all week now lol.

Been an exciting day! (Tom has made me correct my spelling,and then he fell over the laptop wire n spilt his sugar puffs everywhere)

www.bbc.co.uk/cambridgeshire

Please click on this link to read my news story on the BBC website which has been written up after my radio interview earlier. It was one thing talking on the radio but making it on it on to the BBC website is amazing. I would like to thank all the team at BBC Radio Cambridge for everything they have done to help me today. I sound really weird on the radio, will have to work on my voice a bit for future use lol. I have slept all day after getting home as my body is not used to half 6 starts lol. Helen from BBC Cambridge who has written the news article about me would also like me to send her the video footage of the transplant. I am going to see if Helen or somebody she knows would be able to edit the video and do a bit of talking on it like when you watch footage on the news.

ON THE RADIO TOMORRROW MORNING!

I WILL BE APPEARING ON BBC RADIO CAMBRIDGESHIRE TOMORROW AT 8AM ISH SO PLEASE TRY AND LISTEN. YOU CAN LISTEN ONLINE IF YOU GO ON BBC CAMBRIDGESHIRE WEBSITE AND CLICK ON THE 7AM BREAKFAST SHOW WITH JEZ. I THINK THAT YOU CAN LISTEN TO THE SHOW FOR 7 DAYS AFTER IT SO THAT IS GOOD.

KEEP YOUR FINGERS CROSSED FOR ME AS I AM SO NERVOUS. THE PRODUCER OF THE SHOW JOZEF RANG ME EARLIER AND WAS REALLY NICE AND GAVE ME THE CHOICE OF SPEAKING OVER THE PHONE OR GOING IN TO THE STUDIO. I CHOSE TO GO FOR THE STUDIO OPTION AS I REALLY WANT TO MEET THEM AS I AM VERY GRATEFUL THAT THEY ARE DOING THIS FOR ME.

Lady Gaga - Just Dance ft. Colby O'Donis

This one is for my darling Evie

Goo Goo Dolls - Slide (Video)

This one i dedicate to Tom Morley my better half

Athlete - Wires

This is a song which i think will best sum up how i feel during the transplant, as i will have wires coming out of my chest and i will be praying that there is some hope at the end of it all so i will try and play this in my videos as well

Joy Division - Atmosphere (Video)

This is one of the songs i picked out for my funeral i love joy division i know that sounds depressing 'joy division' and 'funeral' in same sentence lol.

Success!

I have recieved a email from Jo Taylor from radio Cambridge asking me to give the producer a ring in the morning. I will need to ring at 9.30 AM as this is the time they have asked that i ring, and i am hoping that they will ask for a interview on the show at some point in the near future.I am quite nervous now as i don't know what i will say but i am hoping that they will ask some questions and will take a look at the blog for some further info. This is at least a step in the right direction and it means alot that they have taken the time to contact me.
I am going to write to the  Huddersfield Examiner as well as i am hoping that they will see that i am trying to achieveve the same aims as  Adrian Sudbury and carry on the campaigning that he started. I recommend reading his blog as that is what inspired me to write mine. The link is baldyblog.freshblogs.co.uk please check it out. 

No Joy yet at getting on the radio!

Well i have contacted a few different people with my story but not heard a thing back yet. I did think when i spoke to Cambridge radio the other week that they were interested but not even had a email back to say that they are considering a chat with me which is a shame cos i do want to fulfill my aim and dream of making an impact on people's lifes and getting more BONE MARROW DONORS. I want to hear back from a radio station or a newspaper before i go into hospital cos i think that then i will feel like i am not making a prat out of myself when i make videos of myself cos i am dreading talking and how i look being caught on film . However i am going to film it because i really do hope that people on here will actually find it interesting and useful and i know that it will help me to not shut myself off from the world and sit in my bed feeling sorry for myself everyday. I will have a reason to get out of my hospital bed and do something productive. i have already reached my target of 1,000 blog views already and i haven't had the BMT yet, so that is really amazing and i thank everyone who has taken a minute to read this blog. I want to make people proud of me not sorry for me as this is not a 'i've got cancer please feel sorry me' blog it is a blog to tell my story and as i have already said to do something productive whilst i am isolated from the world (you can feel sad for me if you want though lol as i do at times as well, i just dont want people feeling too depressed when they read my blog that is all hah).

Left hospital in good spirits today

Had a routine appointment with my consultant Dr Smith at Leeds this morning, had bloods taken when i arrived (i bled a good 5 mins after as well) then i think i waited about half an hour as the appointments always run over in to the next persons appointment. My white count was 8, platelets 215 and hb was 13.8.  Dr Smith was pleased with my counts as they are steady and haven't increased or decreased too much since last time. I am not in clinic now until the 4th and 6th of October which will be after my nice relaxing holiday.

I informed Dr Smith that Mr and Mrs coldsore are back on my mouth as that is all i had to report this week lol. I asked if he could tell me my liver function result as i wanted to take it with me to my driving course tomorrow to see if it has improved since i stopped drinking. However, the reading for September is abnormal but last months is normal, so he is going to find out whether it is a new drug i am on that is causing the abnormal reading. I think it could be the antibiotics i was taking last week but it isn't anything major so not worried about it, there will be a perfectly logical explanation next time i see him i am sure.
I definately feel a bit more at ease after today as Dr Smith is really good at reassuring me and answering any questions,so it will be a shame that i wont be under his care anymore after the transplant, but i am sure the transplant team will do just as good a job. Just hope they can put up with me lol. I also got chatting with a couple of guys in the waiting room who have had a BMT and they are both doing really well and just have weekly appointments at the moment. I think that they had Acute Myeloid leukaemia and were around late 40's so i hope that i have a good response too especially with me being younger. I think that talking to other patients definately helps answer some of the little worries that you may have. I asked whether they stuck to everything in the transplant booklet and they said to only use it as a guide not to do everything single thing wor for word, so i don't need to worry about my clothes being washed at 60 degrees and then ironed and other little things like that.

I am just going to crash out on the sofa now as i suffer with fatigue and as i got up at 7 today (which is a rarity for me) my body is ready to sleep again now. I need to stay awake for embarassing bodies later on tonight though as it is a very addictive programme. Oh and up at 6AM tomorrow so not looking forward to that (nor is Tom) as i am a rite moody margaret on a morning!

My 2 fav girls

Me,Mum and Evie

some useful links that will provide more info on how to become a donor and to research CML hope you find these useful i know i did!

http://www.cancerhelp.org.uk/
for more info on CML and other cancers.

http://www.cmlyorkshire.webs.com/
this is the site that i am a member of for my cml support group so you can go on here for info on other cml members and dates of future cml support groups held at Leeds, so if there is anyone on here with cml or know somone with cml i hope you find this of use.

http://www.leukaemia-research.org.uk/
for more info on the different types of leukaemia including CML.

http://www.anthonynolan.org.uk/
to find out more about becoming a bone marrow donor, i found this was the best site but there is also another site below to click on aswell.

www.blood.co.uk/pages/marrow_info.html
to find out about becoming a donor and i did get the age wrong earlier it is between 18 and 49 if want to on the bone marrow donor.

I hope that some of these sites are useful for further info.

CML continued...

Symptoms continued

I have talked about the symptoms in the chronic phase of the disease, there are 3 phases of chronic myeloid leukaemia which if left untreated you will die! The accelerated phase is the next stage of the disease and there are no more side effects than the chronic stage. The final stage of the disease is called the 'blast phase' and the side effects are likely to be worst and more noticable that the disease is progessing now. Symptoms include:

• Lots of infections close together
• Anaemia
• Unusual bleeding such as nose bleeds and heavy periods in women
• swollen lymph nodes
• itching (any part of the body)

9 out of 10 patients are diagnosed in the 'chronic' stage

How it is diagnosed?

CML is usually diagnosed after a blood test comes back as abnormal and you are then referred to a haemotologist who specialises in blood problems. The blood test will show a high number of immature white cells prompting the haemotologist to ask to see you asap.

You will give a full medical history and then have a physical examination when you attend your appointment. I was diagnosed over the telephone so i was not seen until the next day, most people are already at the hospital when they are told though. You then have another blood test done to show how many leukaemia cells are present and your doctor will then want to do a bone marrow sample to confirm the diagnosis so that treatment can be planned.

Bone marrow biopsy

I am hoping to film my bone marrow biopsy on the 4th of October as long the nurses allow it and i can have it done with sedation if i like. If i am allowed to film it then i may choose not to be sedated as i will have a reason to be  brave if i am having it filmed. I had a bone marrow sample taken 2 days after i was diagnosed and i have gotta be honest and say 'yeah it did hurt a bit' but that was when the local anaesthetic was injected in to my hip bone, it doesn't hurt after that just feels very strange. However, if you are wanting to go on the bone marrow register you will not have this procedure done, you will just give blood to determine whether you would be suitable to go on the register (enough blood cells in your blood etc) and you need to be under 40 to go on the register aswell but i will double check this. Right the doctor will take a sample of bone marrow and look at under a microscope to work out which treatment to give you and which stage of the disease you are in, this can take about a week.

I think it was about 4 weeks before i was put on a drug called glivec which is first line treatment for people in the chronic phase and the aim of this treatment is to control the condition for several years and to give you a good quality of life.

Glivec is a tablet which you take daily for rest of your life if you respond to it. Glivec works by blocking signals within the leukaemia cells that make them abnormal. Blocking signals kills the cells.

Side effects:

• nausea
• vomiting
• swelling of face
• diarrhoea
• leg cramps
• itchy rash
• loss of appetite

I hated taking this drug as it made throw up everytime i took it and it felt like i had drank bleach as the taste after was awful. I had horrific cramps aswell as i remeber having to crawl in to uni i think if i'd have had access to a wheelchair i would of used one.

Interferon alpha

This is a protein normally produced by the body during viral infections (flu). It is another treatment available during the 'chronic' stage. I think that it was a first choice of treatment before glivec. Interferon is given by a small injection under the skin. I was on this treatement for a few months this year and it is hard getting used to injecting yourself, i think it is bad enough someone else doing it but when it's your self i think it is even harder. I did not get on with this drug either as i spent most of my time in bed as i felt like i constantly had the flu.

Side effects:

• chills
• fever
• headaches
• back ache
• tiredness

I had all of these it was not pleasant at all i have to say.It says in the booklets that these side effects wear off after the first few injections, i think this is bullshit as i had a temp everyweek and all the side effects above the whole time i was on it. Oh and if your not already depressed you are likely to be whilst on this drug, i don't think there are any plus points to taking it except it might reduce your white count. Guess what this didn't lower mine at all as i am an awkward patient lol.

Chemotherapy tablets

Hydroxycarbamide is the most common tablet used and this is the only treatment that has got my blood counts normal but it doesn't do anything for the actual cancer which is a shame because it is brilliant for reducing white blood cells very quickly, and the only side effect i have had from it is putting on nearly 3 stone but i hope to lose it all again once i have the transplant.

Dasatanib and Nilotinib

These are the alternatives available if you do not respond to glivec. I have being on both of these drugs and had no joy as it turned out i had the rare bone marrow mutation which means you will not respond to all 3 'wonder drugs' as they are sometimes called. I found that the dasatanib caused a horrific rash and swelling so i lasted probably a month on it and the nilotinib i didn't really have any side effects on. Dasatanib is again a tablet and you take it twice a day and it blocks out the dodgy cells like glivec does, they do not know how long this drug will have an efffect for as it hasn't been out long enough to know, but it should have a long lasting effect like glivec.
side effects of dasatanib:

• diarrhoea
• tierdness
• fluid on the lungs (so they usually do chest x-rays whilst on the drug)
• headaches
• rashes
• swelling
• bone pain
• fertility may be affected but not sure how long for

Nilotinib is again tablet form and again blocks out cells. It is important to take it 2  hours before you eat or an hour after you have eaten, so when you get up on a morning and then before you go to bed is what i found best but everyone has their own way.
The side effects:

• nausea
• diarrhoea
• skin changes
• constipation
• tiredness

I don't remeber having any of these, i just found it awkward getting used to taking it on an empty stomach as the other 2 drugs i had to take on a full stomach to prevent nausea.


A few statistics

Glivec- 9 out of 10 people will live 7 years and some scientists have estimated that most people will live for at least 19 years on glivec.
These are just rough facts they may be proved wrong and average survival time is different for every patient as every individual is unique.

Most people who have high dose therapy for a bone marrow transplant will live for 15 years, if that is true i may only live til im 35(i hope this wont be the case before you think i am being morbid but i do have to prepare myself for the worst and that means i could die during or after the transplant i have to deal with that cos if i didn't then i would be very naive).

I think the hardest thing for me at the moment is that i keep having dreams about my own funeral, mind you last night i dreamt Liz Mcdonald off corrie was my mother so i don't which is scarier lol. I am going to have to plan my funeral cos i aint having my family picking my songs and singing a load of hyms i have probably never heard of lol. I know that i would have Joy Division-atmosphere as a definate song and then possibly The Smiths (i sound really depressing now) i did have another song i had picked and it has slipped my mind completely. I wont mention owt else to do with this right now cos it will be hard for my family to read but i am sure they will understand why i have mentioned it as every 30 out of 100 people who have the transplant will die and that is a lot of people (not numbers) to me.