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.
Still thinking about you Lauren. You must be getting bored. I know i was glad to get out after a couple of days. These people know what they are doing. I'm glad your friend was able to see you; that would have taken your mind of things.
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So your hair is coming off. Your wigs really look good; a lot better than a hair style like mine.:) Are these weird dreams censored?....We both send our love to you. xxx
You are one very brave young lady!
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