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?