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.