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.

What is CML?

Chronic myeloid leukaemia is a rare type of cancer affecting around 700 people a year in the UK. Most of these people are aged between 40 and 60 and is slighty more common in men then women. That explains why my CML support group views me as the baby of the group as i am the youngest member.

Leukaemia is a cancer of the white blood cells (i actually didn't know this til the other day as i thought it was all the cells in the blood so it shows i don't know everything afterall damn!). So usually the white cells grow in a controlled way, but in leukaemia they grow out of control and the cells divide too quickly and are not developed properly when they are released in to your blood stream. In CML, too many myeloid cells (a type of white blood cell) are produced. The myeloid cells are released in to the blood when they aren't fully developed so cannot work as they should be doing. These cells then fill up the bone marrow and stop it from making blood cells as it should be doing. Therefore, you are more likely to get an infection because you do not have white blood cells that are working properly to fight off the infection. Also the bone marrow cannot make enough healthy red cells and platelets due to the overcrowdedness of the immature white cells.

I must also stress how rare this cancer is for children and people of my age group. CML develops very slowly hence why it is called 'chronic' myeloid leukaemia.

Causes of CML are not known, but if you lived near high voltage cables, household radon, being in a nuclear accident then there is nothing to pin point why you have developed CML. I know that none of these apply to me so i will blame it on being on my mobile phone too much when i was younger. Also it is not something which can be passed down to your children which is a relief as i know that i did wonder if this was possible at some stage.

Symptoms

With Cml it develops very slowly over a lot of years so you may not have any symptoms.You could find out that you have it if you ahve a routine blood test for something else. I personally think that i had the disease from when i was 17 as that was when i developed a gastro-reflux problem, then on my 18th birthday i had chicken pox for the first time and was constantly at the doctors for different illnesses up until getting diagnosed. If they had done a blood test years before then i reckon i would have being diagnosed then and wouldn't have got more ill as the years went by, but there is no point dwelling on the past and i should just focus on the future now  and beating this cancer.
So symptoms in the chronic phase which i had all of them are as follows:

• Fatigue
• loss of appetite
• weight loss
• night sweats
• enlarged spleen (which explains why i couldn't eat and is probably why i was producing too much stomach acid as my spleen was taking up half of my stomach on diagnosis!)
• bone pain (which i still have)
• men can have a painful erection that wont go (trust me to find that out in my research lol)

Right i have just got to pop out to the supermarket now but will continue my CML information when i get back.

What a miserable day!

I managed to drag myself out of bed to go to yarmouth race course to watch a couple of Tom's horses run and sheesh i wish i had watched it on tv lol. The rain was awful and i am thinking that it wasn't the best thing for my chest infection which casued me to remain in my pit all weekend. I think i moan about stuff that are really quite insignificant to the major stuff going on in my life but i guess that is just a coping mechanism really. The chest infection is minor yet i am more fed up with it than i am with the 'cancer' at this moment in time as i hate being kept up all night coughing at least the cancer doesn't. However, with that said i would gladly have a chest infection for a year than have cancer, i think lol.
Anyway, i now at home again tucked up in bed watching Shutter Island for the second time and i am still totally mind boggled so if anyone would like to explain it to me that would be good. Also if anyone has any dongle recommendations please let me know as looking in to buying one for the transplant as no internet on the ward, and there are pay and go or monthly ones and i don't want to choose it because it is pink as it might be a pile of crap so i have no idea how you know which is better than the other really. Gees i sound like a rite saddo here i am going to be putting people off reading this blog lol.
I haven't got a right lot to report really as spent the weekend in bed with a slight part of me hoping for a temp so that i had a explanation to why i was feeling worst and not better.
ooh i know what i have left out i had my drink driving course at Peterborough on Saturday which means me paying £200 and sitting in classroom 9-3PM for 3 Saturdays in a row so that I get my license back in January 2011 instead of July 2011, which is very reasonable. I was actually surprised at how interesting and how informal the course was and i have made a good friend on the course called Scott who i will be staying in touch with after the course. So it hasn't been too bad and if i hadn't drunk drove i wouldn't have had to do the course but i would never drink drive again and the course definately educates you about just how serious it can be if you have any alcohol and drive so i am glad that i chose to do the course. I only have this Saturday left and then next Saturday its my holiday to Scarborough for a week so gonna keep my mind busy with other stuff and hopefully it wont drag til its transplant time cos i think my mind still thinks its next week. I am going to type up some info on Chronic Myeloid Leukaemia tomorrow as i haven't really talked a lot about it and if anyone wants any info or owt else just let me know as it gives me something to do. I havent put a lot of full stops in this page of writing so i am sure my editor Tom will sort it for me haha!

Just spoke to Karen the transplant co-ordinater about a potential transplant date-29th October

I have just spoke to Karen my transpalnt co-ordinater who i really admirer and appreciate everything that she does for me. I am not going to get my hopes up just yet but another donor has being selected. It is a male donor from the UK and he has being chosen over other potential donors as he has had no pregnancys which is something they look for when picking a donor, so being male this is obviously a dead cert lol. Karen is hoping to get the donor clearance by 5th of October so i am praying that this time the medical will be fine. The reason the other donor failed her medical is because she went on holiday earlier this year to a country that has malaria and she did not have any vaccinations or malaria tablets before she went. She cannot donate blood for 6 months as a result of this. Therefore, if she gave bone marrow the team wouldn't know if this could affect me. I am in a lucky situation though where there are other matches so the safest option is to use a different donor and i am lucky enough to have one to fall back on to, as there are so many people who die in my situation becasue there is no other donor to use!

Some dates then,

• 4th of October is when i go to give my bone marrow biopsy (which i hope to film).
• 12th of October is my radiotherapy test dose
• 21st October is when i have my hickman line fitted and potentially when i am admitted to hospital for my 6 week stay in isolation.
• 29th of October THE TRANSPLANT-this is when i recieve the cells from my donor.

I am now going to ring my local radio station to see if they are interested in my story and also ring up the newspaper and ask them if they will do a article for me. If you don't ask you don't get so worth a try i reckon.

PLEASE BECOME A FOLLOWER

i have changed the comment settings so that anyone can leave a comment on here. i did not realise that only people with a google or yahoo email addy could until Tom and my Mum were telling me so i am hoping for more comments and follwoers now as i assume anyone can be a follower aswel now that i have changed it, i woild like lots of comments so i can see just how many people are following me so please comment or becoime a follower and lets raise  awareness and get more bone marrower doners so that people don't die of blood diseases but have a chance of a new life! check out the Anthony Nolan website for more info on how to become a donor or how to become a volunteer to get other people to become a donor, all you have to do next time you give blood is to ask to be tested to see if your bone marrow match for someone.

In the words of Rob Zombie 'i feel so numb'

I don't know how i feel, don't think it has sunk in yet that everything i have made sense of in my head is now not happening in 2 weeks time. I am back to where i was 6 months ago, shit scared that my disease is going to go to the final stages as they don't know how long it will stay in the chronic stage for. Don't get me wrong i realise how lucky i am to have a common tissue type and even more so having read that a lady on my cml support group site died this year because she had a rare tissue type so couldn't have a transplant. I know that as longs as 1 of the 2 other people pass their medical that the transplant will go ahead straight after that. I did sleep well last night and did not get up til 3 this afternoon and i have just taken my sleeping tablet now so i will be asleep again soon, so Tom will be pleased that he now has some peace and quiet lol. I am going to go see Prohibit and the rest of the horses in the morning and take them all some polo's as you can't give out to one and not the rest. I will try and post just as much on here even though the transplant is delayed because it helps to keep me sane. That is all i can manage to write just now but will try and write again tomorrow, Good night!

Good and Bad news

The good news is that That Tom's horse Prohibit won the scarborough stakes at Doncaster today (wish i had been there but i had to sacrifice it for my transplant meeting). We have got a lovely shiny trophey added to the mantel piece now, so go Prohibit. I am so happy that Tom was there and had a ace time i cant wait to see the photos.
Now the bad news, i aknow i said this blog wouldn't be mordid  n gloomy but i am crying as i write this as i am upset and still in shock as i have had a real blow to the head today. My doner failed her medical test, which means i now have no doner and my transplant is postponed until further notice. There are two other people that they are going to look into using though so hopefully in a months time something will be sorted. I had aactually started being alot more positive towards the transplant the last two weeks and i think that is why i am so upset now because i wasn't prepared for anymore bad news in my life. However, i need everyone to keep their fingers crossed and pray for me that someone else will be able to be my doner and that the transplant wont be too long away and i can then write in this blog that i am cancer free and able to live the life of a normal 20 year old. I will keep posting on here though as this is the only thing keeping me sane and helping to make something positive out of a shit situation., and thank God that i have a common tissue type, i always knew i was common as they come lol.

Nearly time to go to transplant meeting

Getting picked up at 3PM to go to transplant meeting with my mum, my appointment is at 4PM so that should leave plenty of time. I have just had a little snooze so i am alert and ready for my meeting. I only have a few questions for my consultant today which are: when am i giving my bone marrow biopsy? whill i be on penicillin everyday for the rest of my life? which chemo drug and anti sickness drug will be having? am i sedated for the Hickman line procedure? do i write a letter to my donor before or after the transplant? i am at risk of other cancers becasue of the high doses of radiotherapy i will be recieving? what does it mean that my liver is enlarged and can be felt during an examination of my tummy? i think that these will do for now lol . Will let you know how i get on after i ahve got home 3 hours after the meeting! bye for now.

My new real hair strawberry blonde wig

unexpected stay in hospital

Yesterday i had to stay in hospital overnight due to a chesty cough and temperature. I was asleep most of the day and when i crawled out of my pit around 5pm, i felt like i had been out clubbing the night before. i did my daily temperature check and it was 38.3 so i phoned the teenage ward at Leeds as i have to report to a nurse if it is higher than 37.5. They said i needed to get straight over so they could do my observations, so after 3 hours in the car i arrived on the ward. I no longer had a temperature when i arrived (sods law), however i had to stay in over night so that they could repeat my observations and get me started on some IV antibiotics. At 3AM i was sent down for a chest x ray which came back as clear and i had my bloods done which were Whit count: 9, HB:12.4 and platelets: 367 which was a big improvement as the week before my white count was 34 and my platelets were 659. My white should be between 4 and 11 and my platelets between 150 and 400. I am now waiting for my Nan and Grandad to come and pick me up to take me to my Mums tonight as i can't go home just yet as i have hospital tomorrow aswel for my transplant meeting. I bet you are thinking i love the place as i spend most of my time there at the moment lol. I am glad that the chest infection has only caused minor problems for me though and only caused a one night in stay in hospital. Laters for now i shall post tomorrow after my transplant meeting and i am sure Tom will edit this post for me as i am sure i have made a few typing errors.

Phone call from my Transplant co-ordinater

Recieved a phone call from Karen my transplant co-ordinater on Friday, to let me know that the 1st of October is ok with the Donor, so just waiting for her medical assesment results which should be back ny the 13th of September. Anyone who is requested to be a bone marrow donor has to have a medical done before the transplant to make sure that they are still fit enough to donate, so fingers crossed that mine is. I am going to write a letter a letter to my donor after the transplant because i would like to go and meet her when i am well (and obviously if she wanted to meet me lol). Right anyway Karen told me that i need to be in clinic at St James's this Wedenesday afternoon for my Bloods taken and to see if i meet the criteria to take part in a trail for the Bone Marrow Transplant and during the meeting i will find out the type of chemo i will be recieving and i will be able to ask any questions that i would like to know aswell.

Before the Transplant i will need to have a Lung Function Test- i have had one before but i think because i am a smoker they want to check that it hasn't altererd as i think it was January when i last had one done. I have to blow in to a machine and this measaures my lung capacity and function. They forget to tell you in the booklets that your sat in a glass box with a plastic tube in your mouth so you feel like your in some sort of laboratory and if thats not bad enough you then have to pant like a dog!

Nearly forget to mention that i will also have to have a Bone Marrow Biopsy taken before the transplant aswell. I assume this is so they can compare my Bone Marrow before and after the transplant. I think i will have a job with the Transplant team at the end of this, i am a fountain of knowledge when it comes to Leukaemia related things now lol. I promise it hasn't turned me into doom and gloom though, i like to cause mischeif for the staff when i do stay in hospital as i am usually a person of high spirits and i do have a very sarcastic sense of humour which i am sure drives my mother mad!

Before the head shave

Afterwards with my nice new shaved head

My nice new wig!

How it all started...

I got diagnosed with CHRONIC MYELOID LEUKAEMIA on the 26th September 2008 (a day which will always stay with me). I received a phone call from my GP who told me over the phone that i had cancer! I am still disgusted that i was diagnosed over the phone. I actually misheard what the Doctor said as well cos as you can imagine i went in to shock and i thought he diagnosed me with mild leukaemia (this still makes me laugh as there is no such thing as mild leukaemia). He said not to worry about dying and to go to Pinderfields (wakefield hospital) first thing in the morning to see Dr Chapple.
My Mum was crying before me when i got off the phone and all i could think was "shit i'm going to die!".
I had made plans to go out that night so that is exactly what i did, and tried to block the thought of cancer out with a few JD's and coke. I just wanted to deal with this my own way so i got drunk before it would all become clear the next day.
It still didn't seem any clearer the next day, but i did feel slighty relieved that i now knew why i had being feeling so ill the last 6 months.
My symptoms

• Pale skin
• Bone aches
• Weight loss
• Fatigue
• Night sweats
• Enlarged spleen

These symptoms are very common in CML. My spleen was taking up half of my stomach at the time of diagnosis, which explains why i couldn't eat.

I will go on to explain my diagnosis and treatments further in the next blog but i just want to explain why i am doing these blogs first of all. I have a rare type of Leukaemia, that is rare in my age group, and that rarely needs a transplant because there are now wonder drugs available to treat it. Alas, I have a rare bone marrow mutation which means that I will not respond to any of these drugs. So a transplant is my only chance of survival. Most patients are 40 and over and take a tablet everyday for the rest of their lives, so i like to think of myself as a rare case as i like to be awkward lol. I hope that if i get enough followers and publicity that i may even get a mention on Look North or in The News of the World, because my aim is to get more bone marrow donors because without them i would have no hope and this blog wouldnt last long. Secondly, I want, like Adrian Sudbury (who inspired me to write this blog), all sixth formers to recieve a talk about bone marrow.

wigs

i currently have a eminem style hairdo as i had all my hair shaved off a couple months ago as i didn't want to turn in to a self pitying mess when my hair starts falling out as i couldn't think of anything more depressing waking up to clumps of hair on my pillow. Anyway, it has grown back quite quick and so i thought i would dye it to match the colour of my wigs and it did turn out a lot more yellow than i hoped so i just need a chainsaw and a boiler suit and Eminem will have some competition lol. But it don't matter cos i am shaving it off again soon and after all the cocktails i will recieve in hospital it will grow back a totally different colour and style as to what it was before. i actually want it to grow back a nice ginger or strawberry blonde (the colours most people want to hide) but since wearing wigs all i have wanted is one like Bree (off desperate house wives) and a blue one that Katie Perry wears but cannot get them anywhere which is so not FAIR! i have i think 5 wigs which will have easily come to 2 grand for all of them but they were worth it, i can be a different person everyday and no one would know if you didn't know me. i think that by having a skin head and wearing wigs for the last 6 mnonths has deffo prepared me for hair loss cos i am not worried about losing my hair in a few weeks. i am also going to get some temporary tattoo on eyebrows as well cos i think i will not like having no eye lashes and eyebrows cos i will look like a potato head from toy story that needs bits and pieces of its face reattaching lol. i am sure that tatooing or drawing eyebrows on will provide me with hours of fun in hospital as i will end up looking like a drag queen lol. i have also purchased a rather groovy lepoard print turban thingy from the wig shop as it is speically made for people with no hair, i however, would not have paid the £25 for it if i had hair though! well that is about it really for hair loss and wigs for now just going to the hairdressers tomorrow for some of them snazzing up and i am quite tempted to get my hair shaved as well but then again i don't cos i do quite like my Eminem look, even if my boyfriend said i look like a lesbian! My hair is still better than his as i actually brush mine and he never does.

Radiotherapy

Radiotherapy is the use of powerful penetrating radiation (X-rays) to destroy the diseaesed marrow and supress the immune system. In the case of Bone Marrow Transplant it is Total Body Radiation (TBI) which means the treatment is given to the whole body rather than just one specific area. This treatment is painless, although there are side effects.
The treatment is given in divided doses,twice a day. Each takes about 20 to 30 minutes. It involves me lying still on a hard bean bag bed but is otherwise quite straight forward.
I will have a test dose prior to the transplant. There is usually a gap between the test dose and the start of the TBI treatment. During this time the TBI is being planned using the results of the test dose procedure.

THE TREATMENT

Radiotherapy can cause sickness and diarrhoea (can't wait!) but i will be given tablets to try minimise this.

The treatment can also cause an immediate redness and itching/tingling of the skin followed by a darkening which occurs after 2-3 weeks. It is important that i follow a strict skin care, to minimise these problems.
i already have sensitive red skin anyway so i shouldn't notice a big change really, i hope.

Pre transplant info

Function of Bone Marrow
Bone marrow is a soft, spongy material found inside some bones. Its main function is to produce blood cells. Immature blood cells or stem cells, produced in the bone marrow continually divide and eventually mature to become different types of blood cells. Some, however, can be found in the blood stream-these are called peripheral blood stem cells.

What is a Bone Marrow Transplant?
Leukaemia and other blood disorders interfere with the stem cell growth causing the cells to stop developing or to become defective. Eventually, the abnormal or immature cells enter the bloodstream causing the patient to become ill. Transplantation can offer the best chance of cure to patients, as it aims to replace the body's bone marrow, providing new immunity and allowing normal cell production.
The process involves destroying the diseased marrow with a combination of chemotherapy/radiotherapy and immunosuppressant treatments. Chemotherapy and radiotherapy act on cells that are dividing and are used in the treatment of cancer because cancer cells divide more often than most other cells. Once this has been achieved, the new, healthy marrow can be infused into the patient, to fill the "space" created.
The re-infusion of the marrow is relatively straight forward (it is given intravenously through a drip line, the same as a unit of blood). Understandably, it is often a major focus point for everyone involved. The cells naturally find their way to the marrow cavity where they grow over the next 2-4 weeks, providing a new source of healthy blood cells. This process is called ENGRAFTMENT.
During the interim period (whilst i am waiting for the new marrow to engraft) i will have no immunity and be susceptible to a variety of problems.
There are several different types of transplants to treat the types of disease that you have-your own circumstances will determine which transplant you have. The process of transplantation does not involve any surgery, as some people may think.

I am going to be having a MATCHED UNRELATED DONOR (MUD). This is an allogenic, matched transplant using a donor who is not a relative. Volunteers are found from donor registries, for instance, the Anthony Nolan Donor Panel. In this case the donation of marrow is anonymous.

3 weeks til the transplant!

Since having a date for the transplant, i have actually felt more relaxed, this may seem strange as it is going to be a scary time, but it is also an exciting time as it is the start of a new life for me. I am still taking my mirtazapine (sleeping tablet and for depression) but i just feel like a weight has been lifted from my mind now i have a date. All being well i will  have my radiotherapy test dose on the 21st of September, this is because everybody needs a different dose depending on their weight and height etc. On the 23rd of September i will have my Hickman line fitted, this is a flexible plastic tube which is tunelled under the skin and comes out a few inches below the collar bone. It is used for taking blood samples and giving me all my drugs i need whilst in the ward, as well as after my transplant. This is done in order to make access to the veins easier and save me from having repeated needle stabs for blood samples. It usually stays in for up to 6 months after the transplant, this is because i will have to have regular blood samples taken and may need blood transfusions after the transplant. On the 24th September i will be admitted to the Bone Marrow Transplant Unit at St Jame's Hospital Leeds. I will then undergo 5 days of radiotherapy. The treatment is given in split doses, twice a day and takes around 30 minutes. I will have 7 days of chemotherapy. I will undergo these high doses of treatment to kill all the leukaemia cells which are in my bone marrow so that i am ready to receive my donor cells which is on the 1st October.