The year is coming to an end, Im going to be a year older on NYE and Im here pondering on how I ended up here as it wasnt a part of my plan at all! Its not all that bad. Was talking candidly to someone today about PV. (Polycythaemia Rubra Vera) They were more concerned about the multiple phlebotomys (venesection) that I have. Although this is with a huge needle, removing 500mls or more of blood on a regular basis it doesnt hurt, Ive had it so often that I dont even feel it, the reward is how I feel after it, less sluggish, able to think correctly, less itching, less pain. Its totally worth it. After experiencing a myocardial infarction in Russia this year due to an arterial blood clot caused by too many platelets and super viscosity of my blood I started a more radical regime of bloodletting to get it under control. The thing that worries me is that its just a temporary solution. In Australia the preferred treatment is chemotherapy Hydroxy Urea (I avoided it for 8 years now) and there is a new drug specifically formulated for polycythaemia Vera, called Jakafi which is not available in Aust yet apparently. I dont know, pumping poison into your body to make you better just seems Irrational to me. Anyway January will mean facing this thing head on and beating it once and for all. Ive got too much to do and need a lot of time to accomplish my goals. Recently I set off to South America to put a show together, it was coming along well until I relapsed and had to find my way back home. It meant tying up loose ends in Chile, paying out people, leases, studio, musicians etc, and setting myself back up on land to work through treatment (Ive only missed one gig in my life due to illness and that was when I dropped a speaker on my head and injured my knee) it was a very expensive and regrettable exercise to undertake. I started a fundraiser to assist me and I thank everyone who helped. With this and putting together all my resources, credit and selling what I had to get back here Im finally settled and established back on land. Now my goal is to get enough work to help me pay for the treatment I require and keep my head above water throughout the process and try to start or assist some kind of organisation or group to educate people more on this and other chronic blood disorders. To date work is coming in already, so I think it will all fall into place quite soon and there is a good haematology dept right here on the gold coast. I think 2015 will bring good changes for me, and I hope to get my project UNITED SOUND back underway again soon. Its been years in the planning and God knows Ive had too many kicks in the teeth in the past few years not to complete it. To be honest, I thought this was my time coming finally, but health comes first and I think I made the right and most sensible decision to come back when I did So if youre planning to visit QLD soon (Gold Coast) let me know and Ill give you my gig guide. Until then, if you have any questions about my progress, or PV or just anything in general (or if you know any fellow PV peeps or even have it yourself) feel free to ask any questions or to contact me. Of course theres plenty of info on the Leukaemia foundation website. leukaemia.org.au Please keep a check on my website roxyshow.biz for more info. Have a great, healthy and successful 2015 Thanks for the letters and emails of support. It is very much appreciated. Xx Roxy
Posted on: Sun, 28 Dec 2014 13:49:54 +0000
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