It took quite a few years but I now have a good compliment of doctors on my case, locally my GP's then my MDT Team which is Dr A Owens (a brilliant heart surgeon from James Cook) and Dr Abassi - I haven't got an oncologist on the team and would presume that I am still privately under Dr A Hughes. In Sheffield I have the delightful and talented John Edwards and in the USA Prof Abtin. What more could a girl want and I must say that they are all very good, accessible if needed, and on good terms. This was certainly put to the test on Monday night.
I received an email from Prof Abtin which started off with general chit chat then to the scan that he had finally had chance to have a good look at. He wrote that I should speak to my oncologist about starting chemo again as new growth had appeared around lymph-nodes etc. He also said that I could fly but this didn't stop The bottom of my world falling apart in an instance, I actually rang him and he said you sound down, I said well you have just dropped a great big bomb shell! He apologised for having a big mouth (Americans expect to hear everything on a report), but told me not to worry, I have a growth near my heart that he can ablated and to get sorted with chemo to hold back the new growth. Gary forwarded the diagnosis on to our good friend Doc Andy Owens, this was about 9.30 pm. Neither of us slept much and the next morning checking the email Andy had emailed back several times upto midnight and then rang at 8.00am. He had called his team together and couldn't find the evidence to back up Prof Abtin and told me their was nothing to worry about. Poor Andy hadn't slept much either, he must have pulled my scan up and gone over it with a fine tooth comb too and then calling his team together for an early morning meeting makes me feel extremely humble. I hadn't contacted John as he still hadn't come back with his views on the scan so although feeling relieved that Andy hadn't found anything but unsure because Prof Abtin had. Not a nice place to be in as I have the greatest respect for them both and can't believe one would be off the mark.
Then on Wednesday John emails me, poor guy has been overworked and also spending alot of extra time trying to get the NCARD up and running. He gave me the good news too about being able to fly but to try a short flight first. It was good to hear that my melon air space was now that of a cherry tomato and had improved much better than his expectations, together with he found nothing wrong with my lymph nodes under my arm, that confused me because I didn't think or know about my lymph nodes under my arm.
The name of the game with meso is to stay one step ahead and at any early stage get things sorted, I know we can only buy time but after spending the last 12 months in recovery I am not ready to start thinking the worst and have this bloody cancer taking a front seat on my health again. Yet, if there is a little doubt to whether it is growing again then I will be on the plane or under a knife - anything to rid my chest of new growth, we all know how that one little cell can multiply and how fast the little buggers can move. Although on the phone Prof Abtin said he did think it was moving at a very slow pace, maybe no more than 1mm and wasn't in any hurry to ablate. Remember ablation is standard practice in UCLA after surgery, any new signs are eliminated as they happen.
My next scan is due in March, the one in December was taken on the back of the August one showing some difference on lymph nodes but again that one was a conflicting report between Bishop and Sheffield. I wish there was a different test they could do, like a cancer marker you can have with most other cancers, yet our only sure way of detection is CT or a scope.
Tuesday was a wash out for me, I was cold, my back was frozen and this bloody heartburn seemed to be yelling at me. No the tablets aren't working but if it is a couple of years worth of damage a tablet isn't going to fix the problem overnight. I took a muscle relaxant on Tuesday night but had another sleepless night last night and the last thing us meso guys needs is to get run down.
Have found out today that my appointment next Tuesday is just a consultation so I will be no further forward and will probably be on a long waiting list to get the camera but at least I can stop worrying about the procedure for quite a while.
Our meso mate Danny is finally going to see John, hopefully his scan will show that surgery will be an option then it's down to what Danny want's to do. I gave him a quick ring last night and he sounded very upbeat, I think relieved that he was finally getting to see John. It's the hanging around wondering what you should do or what options you have that frustrate the life out of you.
John has finally got the new NCARD website up and running and here is the website address
http://www.ncard.org.uk/
I have been through it and it is informative, it has information on up and coming trials etc. I hate that word trials because someone doesn't get any treatment, why can't they say to people would you like to do chemo or do nothing instead of giving someone nothing. I know quite a few who have opted for not having any treatment so why can't they use the ones who want nothing as a comparison to those who try the drugs? Surely there must be a different way of testing out new drugs, I bet this is why many never get any further because people aren't going to volunteer if there is a risk they get nothing.
Anyway chemo is out of the question for me, I think Andy Hughes once said that I was more at risk for another dose of chemo than I was from the meso. Yet its 2 years since chemo, not that I would like to experience it again but if push comes to shove I would offer my veins again to the chemo nurse ... but only if it was the last thing to try.
Okay going to have a massage and lift my spirits a bit, then hopefully look to seeing if I can get us both away for a long weekend somewhere that is warmer but withn 2 hours of flying time.
I will keep you informed of what the outcome is regarding my scan, at least I know I have a set of Doctors who want the best for me and care about what is going on inside.
Don't forget to check out the website
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