Then Saturday and Sunday I spent all day on twitter and live stream as it was ADAO’s Conference which I will Blog another day as today has been an important day for us.
I went to the Royal Marsden to get my results of my scan form last week.
We got there early and instead of going in the usual room they put me in the day ward and gave me a bed.
This isnt unusual if there isn’t a chair because they are full up so that was ok even if my mind was running overtime. we do get worked up with scanexity its just something you can help. You know your whole life can change in one scan result.
My bloods were taken and then the doctor came round to see me.
The scan result is my Mesothelioma is growing but its still to small to take another bi-op. Their decision is to wait and let it grow larger and then have another bi-op.
The drug had worked 14% shrinkage from the start of the re-challenge so its grown 4% over 3 scans. So thats in 24 weeks it has only grown 4%. The Meso is very small that it would be impossible to get a bi-op yet.
That is great news, no really as without the trial drug Pembro it would be growing rapidly so the drug has really slowed things back.
He asked about my ankles swelling, sitting there in a chair they were very swollen I said it was from Chemo days but he said Its because I had my veins striped years ago when I had Vicarious Veins. He said that I needed my veins to drain the fluid and didn’t I get told I would have a problem when they did the op.
He is the first one that has been able to explain why I have a problem.
So I will stay on Furosemide but I said I couldn’t take them today as you never know when you will get caught in a traffic jam and I would be in trouble. he laughed and agreed.
The next thing I know my nurse came in with a tape measure and measured me up for some lovely green socks called Fitlegs
It was great that we had others to talk to as the day was soooo long.
We arrive for 8am so that we are there for 8.30am.
There was a training today so we waited and bloods were taken by 10am.
We didn’t get the drug up to the ward until 4.20pm
Then my canulla had been in so long it had bent so another one had to be fitted. Rex is the only one that can deal with my veins and valves so he popped in to do it. We got out of there 5..20pm which meant we arrived home 7.10pm thats a long day when you have got up at 5am.
But I cant moan as this is my life when on a trial and they have saved my life for 5 years now.
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