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!