Lorraine and I had a mad half day in Dublin and enjoyed every second of it. We set off in earnest and to be honest fear on Friday up to Newcastle Airport. Needless to say our flight was late and I didn't ring hubby to let him know. When we finally touched down in Dublin over an hour later I rang home and hubby said he had started to worry but checked the Internet and realised the flight was late. Why was he worried, it was my first flight since the operation and the only way to test the airspace in my chest was take the flight. John Edwards was confident that flying wouldn't be a problem now but to take a short haul just in case. I was a little nervous myself and going up past the 11,000 I did have a little ripple like the feeling of the sea running over your body when you let the waves wash over you. Coming down was a little bit stranger and I had a discomfort for a few minutes only. On the way home I didn't feel anything different, could have been to do with the few drinks I had the night before!
My first thoughts was sunshine but we are still waiting for this letter from our medical team to say that I need morphine for pain so that I can send it off to Dubai so I can get in without being locked up. I only requested it back in January so its only a month so far. I should probably have asked John Edwards to sort it as it may have been quicker .. the old saying ask someone who never has any time and they will always get it done, ask someone with time on their hands and they haven't got time to do anything.
It has been a sad week for news as well, when I was first diagnosed I went through Chemo with a guy called Chris, and subsequently we keep in touch. He emailed this week to let me know that the damn cancer has grown and needs to go back on chemo. For those that don't realise, he has had a good remission as we finished chemo around April 05, so that's nearly 5 years of life without treatment. The Alimta certainly did do a good job for him, wish it could stop the cancer all together.
I have also heard that another of the meso crowd has lost his battle with meso and I would like to extend my thoughts and sympathy to Paul and his family.
Another bit of bad news is that another of the meso circle can't undergo surgery, the meso has spread and not suitable to be removed. What I feel is numb for this person, why wasn't the amount of regrowth picked up earlier, surely the scans or xrays show movement long before we feel the results of it. There again I kept saying it was growing but my oncologist kept saying it wasn't and before I knew it I had 2 cm of new growth where there was suppose to be none.
It's not good enough really, meso cases should be scanned every 3 months, sod the costs, the government wastes money on all sorts and most people who have meso have worked their entire lives paying into the system that should be looking after us. No I promise I am not going off on one .. its just ...
On the good news NCARD could be getting government money so fingers crossed, I hope you have visited the website, although still in early days, it does have information.
I have also heard that John Edwards clinic for surgery has had quite a lot of new cases recently, bad news in one sense as that means either more people are being diagnosed or other treatments have failed. I hope that for these people, John will be able to remove the cancer and give them a new remission time. Taking Alimta a second time worries me a little, I'm not sure whether it makes the meso more aggressive as for myself it certainly didn't slow it down, but I'm no expert. Rather than going through it twice I wish I had gone for the option of surgery and had the pleura removed but I'm not sure whether that was been done in 07. I do know one thing I didn't want to go through with the EPP which was on offer, maybe I made a big mistake but that's one thing with meso you can only do what you think is best at the time, you can't go backwards and there really isn't any markers to say which way forward is the best. But in hindsight I wish I had looked up surgery in 2007 as I think the less treatment you have beforehand the more chance you have of a long remission afterwards.
To those thinking of treatment, go with your gut instinct but make sure you research every avenue that may help you clear your body of this cancer. Oncologists mainly work with chemicals and discount most other treatments, it is down to you to push for information on other forms then and only then choose what you feel is right for you. When you are first told you have meso your immediate thoughts are chemo and you look no further, with meso you aren't dealing with normal cancer, research, seek advice from other specialists then make the choice, unless you are near death a couple of weeks either way will not make that much difference to the growth of the cancer. I still wonder that if I had gone under the knife back in 04, (I didn't like the odds of 50/50 off the operating table .. I wasn't brave like Graham Brown) whether I would have stayed clear of the meso without further intervention. See doubt is always with you, but then I also remember the father and son who both went through it and both died within 18 months as the cancer spread to their abdomens. Nothing is simple with meso is it.
I am off to look at hotel pictures and maybe send a couple of emails .....
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