This week has brought many thoughts flicking through my mushed up brain. The most important is the fight to stay alive as long as possible. Reading that both Denise and Jo have died from mesothelioma this week hit me like a double decker bus out of control, especially more so with Denise.
I spoke to a fellow mesothelioma suffer, Chris, who was diagnosed with me back in 04. I sent him to J Steele because again he was told there was nothing out there for him. He has had Alimta and Carbo 3 full cycles now over 8 years. His meso is hanging from his aorta, a 6 inch mass, which reminds me of the set of curtains I had hanging from my lung back in 04. After my cryo in 08 I tried to get Chris to write to Dr Abtin but his oncologist said it wouldn't help and that was that. I am hoping that if Chris gets shrinkage again he will reconsider this as an option. After all Dr Abtin was 1mm away from my aorta back then too. Dr Steele has recommended the IPM course of chemo and I pray this will work for him. He may be 70 now but he certainly doesn't feel it - again why should he be given up on?
Amanda too has done some amazing research and posted it on her blog, they keep telling people this is rare, it isn't as rare as one would think. Together with Linda (Doing something Positive) they have both raised valid points. It may be rare to community hospitals but Mesothelioma is a rapid growing cancer with more deaths per year than road accidents. Yet we hear road accidents can be prevented, what about deaths from this cancer - surely they too can be prevented!
I feel so alive today, vibrant and energised, I don't know whether my body is going through some mammoth change and kicking the meso out (that would be a big answer to my prays) or I have been instilled with how important life actually is. I journey from one day to the next and never think the next will not be there, this week has proved that, more so with the rapid decline of Denise.
I was also contacted from a company that deals with removal of asbestos, they wanted to use one of my blog pieces in their newsletter to show to employees why there work it is so important. I am pleased that I was able to help.
There is nothing out there that prepares us for when our oncologists say to us "Sorry I don't know what else to try, just enjoy your time left". To date I have had this in 04, 08 and 12, seems every four years - I hope by the time 2016 comes around there are more options out there. Chemotherapy isn't pleasant, in fact I think its the worst thing in life to go through, but if it keeps me alive then I should have the right to keep taking it. I don't understand why we are so far behind the USA. I know we are following them in this terrible Claim for everything but there doctors are still willing to give things ago. They don't see Mesothelioma as a death sentence, they see it as a challenge, why can't we?
Well that's my thoughts for today, neither enlightening, heartbreaking or moaning, just ramblings from someone with chemo brain.
Good luck to all the meso warriors - yes that means you - everyone with this cancer is a warrior and lets hope change is around the corner.
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