New home!

God a lot can happen in a few days! I really need to try and find the energy to update more often, but time seems to run away with me somehow! Strange how you are stuck in one room with essentially nothing to do, yet I still don’t do things like my blog. Its usually just down to tiredness, my head not being in the right place, or an interruption (like my dinner has just been brought in now…. who could resist the distraction of hospital food??!!!)

So whats happened….. over the weekend we managed to get the pain a bit more under control. I also received a pooled bag of granulocytes (white blood cells) on saturday to try and help me fight the infection. My neutrophils at the time were 0.00 so need any help I can get. Amazingly my face had over halved in size over the weekend alleviating a lot of the pain too! Everything starting to go in the right direction  🙂 (Only one slightly negative thing is I’ve developed a drug rash all over my body, but no idea what has caused it!!)

The granulocytes
The granulocytes
Drug rash
Drug rash

Then the ward got the phone call on Monday to say there was a bed available at Kings. Despite a lot of arguing with my CNS here at Kings I decided to stop being so stubborn and child like and come to Kings and get checked out. I think in some way i seem to associate Kings with me being a lot sicker, and feel like by going to Kings with no planned treatment I am giving into how sick I am. But really it is the best place for me to be.

Monday was hardwork trying to get the energy to get my things together to take to London, but with the help of Daddy Paine I got all my stuff sorted. I was 9pm though before my transport arrived to take me to London so I was exhausted by the time we eventually got there!! And of course you then have to go through all the usual admission stuff…. assessed by the nurse, forms, assessment by on call doctor, blood tests, MRSA swabs, etc… before eventually being allowed to sleep at stupid o’clock in the morning!!

I’ve been very lucky and allocated a MASSIVE room for kings standards. I’ve got a fridge and a decent dvd that I can connect my laptop to and there is wifi. So far the nurses have been pretty friendly too, just got to get used to not having my Peterborough nurses around me!

At the moment King’s plan is to assess me and fully get rid of this mouth infection with the IV antibiotics. I’m also going to have my pre transplant tests. So far I have had two tests:

  1. Lung function test: Basically involves breathing in a tube…… the nurse tells you what to do at each stage, but we did three different tests. Basically a variety of breathing in and out to see how efficiently you breath in, expel air and absorb the gases. Nothing taxing although made me a little light headed at points from taking such deep breaths!!  http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Testsandscans/Lungfunctiontest.aspx
  2. Heart Echo Scan: This is basically an ultrasound of your heart. Nothing uncomfortable unless you are particularly shy about getting your boobs out and don’t like cold jelly! I was able to see my heart beating, the valve opening and the valve opening and shutting as blood flowed through.  http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Testsandscans/Echocardiogram.aspx

    The echo machine and an image of the left side of my heart... apparently
    The echo machine and an image of the left side of my heart… apparently

Yesterday I put a call out message on facebook asking for friends in London to donate granulocyte cells (white blood cells for me). I was overwhelmed by the number of you that responded to my message and offered to give up your time and blood cells!! It means so much to know that so many people are willing to try and help me in any way they can. Makes me feel a bit less alone whilst stuck in my isolation bubble. Thank you to everyone that responded or is coming into donate over the next week or so!! 🙂

Tomorrow is ward round and will find out a bit more of the plan going forward and I will update you all. In the mean time I will be continuing to wee in this jug:

DSC_0972

 

 

 

 

 

 

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