Well the prayers of the people have been answered today. I have not been affected by the chemo at all - because I didn't get any. It is a long story....
We had dropped the girls at grandma's and were on our way into the city with plans to get a few things done before my 12:30 appointment at the RAH. In the car, I received a call to say that I wouldn't be getting chemo today because they wanted to work out a few things regarding the trial before I started. She asked me if I had read the information sheet and I told her that the info had been emailed to me but that the attachment was corrupt and although I had replied to let the doctor know that, I hadn't received anything further. We arranged to meet at the hospital so she could give me the information sheet and talk things through.
Until this point, we had been working on what the doctor had told us back on the 16th - I would be getting a treatment called BEACOPP that required attendance at the RAH for eight days straight, followed by 13 rest days. I had prepared myself for that to start today.
When we spoke to the clinical trials nurse who was very helpful (a meeting which, incidentally, occurred in the corridor of the oncology clinic because there weren't any available rooms), we found out that what I had actually been booked in for today was a treatment called ABVD which is the standard treatment in Australia for Hodgkin's lymphoma at stage 3. The trial that they had asked me about participating in is looking at comparing the ABVD treatment with the BEACOPP treatment which is more common in Europe. If I choose to participate in the trial I may get allocated to BEACOPP treatment or I may get ABVD. If I don't go in the trial it is simply ABVD, you can't choose to have BEACOPP.
In addition to this news, we also found out that for BEACOPP treatment I would only need to attend the hospital on days 1-3 and then again on day 8. All the other drugs are pills I can take at home. For ABVD I need only rock up at the RAH on days 1 and 15 of a 28 day cycle. That's a hell of a lot different to eight days straight kids.
So, all in all it's been a bit of a balls up and we're a bit annoyed about it all, well, quite annoyed. It's just frustrating. We'd sorted the girls out, we'd told people what was going on, we'd prepared ourselves mentally and now we have to take a step back, think it all through again and come up with a new plan. All the while the months ahead remain unknown and difficult to plan for.
At this stage, and I really hope it doesn't change again otherwise David is going to clearly verbalise his frustrations to the hospital staff, I have an appointment with the consultant on Friday at 11 am. I will ask any other questions and let them know whether I will be part of the study or not. On Monday I will head to the RAH again to start treatment of some form (AVBD or BEACOPP) at 11:30 am.
Until now the RAH has been very good but this has spoiled things a little.
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boo. Seriously, I HATE people who bail. I can only imagine how annoyed I'd be if the chemo decided to bail on me :P
ReplyDeleteWith all things that go a bit pear shaped, I always figure that God will make something of it, which makes it all seem not so in vain :D
I really enjoy your blog Beth, who knows, I might even learn some of this hospital jargon :P (i'd probably glaze over and then ask them to repeat in alanguage I understand :P)