One day to go...

I know I haven't written an update in quite some time, but this time tomorrow I'll probably be going down to theatre for my surgery. This will be the last try to obtain skin cover on the tumour defect wound, so that I can begin other sorts of treatments to heal the bone, nerves and the aesthetics (though this is relatively unimportant to me at the moment).

I'm nervous, but I trust that God will look after me, and show my surgeons the light. Pre-operatively, I will get my DDAVP infusion and intra-operatively, two units of blood will be transfused. I have been very anaemic for quite a long time, and I quote that even my haematologist said that I am " very iron deficient". I am due to see him again in a fortnight's time back at the OPD about my platelets and he has already liaised with my surgeon's haematology team (since I'm not having my operation at the same hospital where I see my haematologist).

My surgeon is going to send the anaesthetist up to the ward to set up the lines that I will need. My veins are rather poor and we aren't keen for a nurse to do the job. I've had cannulae in and blood taken from nurses six times this year already and each time has taken them several attempts to get into the veins. Hopefully it won't be too bad tomorrow, I don't know how many lines they will need though, as it seems that I'm having so many things via the IV route. It's probable that I'll just have one, and they'll put a splitter on it (at least this is what I'm hoping for...!).

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Chinese New Year is on Sunday; I hope I'll be home in time to celebrate the day with my family, not in the hospital. It would be the second New Year running that I'll have spent in the hospital. Last year, I was in day surgery by myself as both my parents were working and it was a school day. This year will be the same, but I'll be admitted as an inpatient, but I have my best friends coming to visit me tomorrow evening. I hope I can be well enough to see them.

I don't have a lot more to say for the moment, apart from I wanted to thank all my friends who have supported me throughout these four years. I have grown so much, physically and emotionally and I wouldn't be the same person, had these events not taken place. I'll try to post another update at some stage, but for now - all I know is that I'm in good hands.

Running on low

Today, I received my letter for my next hospital admission, which will take place in just under two weeks' time. However, there's a huge, huge catch.

I was told today that I need to get a FBC and clotting screen done prior to my admission to check that I'm OK for surgery. Problem? My serum iron level is 2 micrograms, but according to my haematologist, it's supposed to be 100. I don't eat red meat by default, so I literally have no way (apart from the transfusion) to raise my iron and therefore my Hb levels. We are really praying that the transfusions are able to top up this huge deficit, because I'm really bearing the brunt of this.

I can't get changed without my body hurting all over and without fainting. I can't seem to do anything without feeling like I'm going to pass out. Things that just used to make me ache before, now give me extreme pain. Getting changed from showering this morning, my body hurt in the same way it used to towards the end of a long-distance run, if not worse. To top that off, the nausea and dizziness that came over me was unbearable and I just felt so inadequate and frustrated that I can't even do the simplest tasks without feeling this way.

Yesterday and today have been difficult days; counting down the days to the transfusions, infusions and surgery is painstakingly slow. I'll also be getting a DDAVP infusion soon, and when I'm admitted, to boost my coagulation and make my blood and platelets behave! I need to go up to the hospital to get yet more blood taken, this will be the fifth time in two weeks that I've needed to get it done. So far, I've had  on average ten bottles drawn each time, and on top of this, I bleed about 100ml blood per day from what is/was the AVM.

Everything just feels like such a drag; I have no energy to do anything, and everything I feel like doing makes my head swim. I've never felt like this before, maybe I've had off days, but this has been a string of days, that has become weeks, of feeling like this. I'm just glad and thanking my lucky stars that I have a great haematologist and surgeon who want to help me get better.