I finally had a chance to catch up with Dr F Abtin from UCLA on Friday. After he reviewed my latest scan and gave me his comments I was relieved. He also believes the growth pattern has stabilised, although not meso free the nodules he is concerned about have stayed stable and at present he doesn't want to rock the boat by cryoblating them in case they set the meso off. He did note that my air leak has enlarged and wonders if I do have a new leak, if this is so then maybe that is what is causing me to feel so crap at present as it could be caused by a bug.
I did say I am so pleased that I won't be seeing you but obviously because I don't need treatment. I told him that my specialist say's he's worried about radiation poisoning but my answer back was only if I was on an Xray machine or CT Scan for 7 hours a day, and everyday for a week would that be a real concern and the effects would show in some 15 years. But having a scan every 3 months isn't going to make any difference whatsoever. So armed with another comment for the next time I need to battle.
I know that I really shouldn't moan about pain, after all I am still here, and I do do most of the stuff that I enjoy, but I guess I also talk about the pain alot because a) others out there may have the same and not know if its normal or not b) I need to release this grumpiness somewhere and c) I'm a woman after all!
Anyway I was talking about cryo, I asked Dr Abtin how it was going in UCLA and he tells me they are doing around 100 patients a year, they are still waiting to have a full findings report published which will then make it standard practice. It seems the insurance companies are pushing hard for it because a lot of patients want the treatment but can't get it through insurance and have to pay themselves. I thought this was the only country that trials and results took so long.
I also did some recent research to see about cryo and found a lovely story about a lady called Doleros, unfortunately she died in 09. She had had surgery followed by 25 radiotherapy treatments a course of Alimta then cryo. Having had surgery and 3 radiotherapy treatments followed by nothing I hope I can still keep going!
I also heard from John Edwards and he was telling me of a patient that had surgery 3 years ago and is having Alimta for the first time, that is another good record. I still wonder what would have happened if I had had surgery back in 2007 instead of taking Alimta again, the cancer would have been a lot less and maybe the recovery a lot faster. Even John said we were lucky, he that he could remove it all, and me because it came out. I thank my lucky stars that I had my cryo before it broke through my chest walls otherwise I wouldn't be here telling you my woes on the world.
Action Day is coming up and it will be interesting to here what the new number of cases are per year and whether our life expectancy average has risen. You would think with the standard treatments of Surgery, chemo and radiotherapy together with the new technology we have for meso, our average should now be up from 3 months to a year to something like 1 yr to 18 months. The Doctors are recognising the symptoms faster and getting on the case that much sooner. Yet still manage to let some of us down.
Don't forget to support your local Action Day event, numbers attending show we are interested and want more done. At least for me this year it will be a quiet one, no TV interviews, newspaper articles or speeches.
Yet in my heart of hearts I feel that we are still in the stoneage regarding treatments for this disease, we hear about new treatments but they never come to life or even the way forward with surgery is hummed and harred by doctors.
This week I was off colour again and spent Thursday morning back in bed missing out on all that beautiful sunshine, I am keeping my fingers crossed that this could be a bug because just as my operational pains are starting to get there this new one is pushing me to distraction. Or is it the my poor brain can't deal with all the pains at once. But however I feel I am still pleased to be on this earth, I would just like to be pain free and when I go to bed be able to lie comfortably and fall into a nice deep sleep, but that ain't going to happen so I am trying to re-program my brain to get real and realise that this is as good as my body will get and any thing better is a bonus. Can't promise I won't moan in the future but will give it a shot.
On that note I hope you aren't in too much pain and meso is being kind to you too. If you're at war I hope the battle is going your way, keep positive and do me another favour, ask your specialists questions. The only way to stay ahead of the meso is to know everything you can about your disease. Research everything, if you have odd tumours instead of wide spread thickening consider the other options of new technology, if you have wide spread thickening consider surgery before the stuff spreads outwards and its too late. Yes surgery is a long recovery road but you can still do most things (after 6 weeks) pain in one maybe nothing to another. Put your body above what your specialist says, they don't know everything and sometimes they don't even tell you that they don't have any answers and sometimes they really aren't interested.
This is your fight, it's your life and if you won't do battle no one else will do it for you. .. It's fact.....
Battling on as ever