On Off On Off

Honestly, I've no idea really where we are with this now.  Having posted a really positive couple of posts I then proceeded to have a day and night from hell. But it was only one day and night and the memory is fading now so I won't bore you with all the details.  Suffice to say there was some pain, some constipation, quite a lot of sleeplessness and generally a feeling of being rather wretched.  But I'm sort of over that now and feeling a bit better. Yay.

More worryingly is the drug trial position which isn't as clear cut as I thought.  My main worry had been the radiotherapy and how that might interfere with the drug. Turns out it might have affected it but the radiotherapy itself was short lived and as long as there is a couple of weeks' gap it's not a problem.  The problem is the steroids....

I was put on a really high dose of steroids when I was first admitted to hospital following the MRI scan on the Monday (2? 3? weeks ago?). They were used to try and shrink the tumours away from compressing my spine and paralysing my legs. The radiotherapy takes time to build up and have a shrinking effect and, in fact, actually makes things worse to start with because it inflames the area.  Hence the high steroid dose.

The trouble with the steroids is that they affect the immune system too (there's a whole load of complicated science stuff around this and how your body needs to produce its own steroids too). And the trial drug is designed to act on my immune system. So you can see the problem for the Americans in this.

The other problem with steroids is that you can't just stop taking them. Apparently. You need to be slowly weaned off them.  Which then starts interfering with the trial parameters because they want to get up and running and don't want to wait around while I'm being slowly weaned.  So we've decided to up the weaning pace i.e. wean me more quickly than would otherwise be the case.  But this carries it's own dangers.  Will the inflammation from the radiotherapy reassert itself which could mean that we end up back with compression of the spine and paralysed legs? So I need to be really careful and keep a close eye on all my symptoms.  But fingers crossed we're steering a middle course that allows me to stay on the trial. Watch this space.

In the meantime it's off to the wedding of Michele's daughter tomorrow. I'm so looking forward to it. Becky is a beautiful woman and is going to look so fantastic and Scott is really handsome too and going to look just as good.  And of course me and DD are going to look just fabulous :-) I'll try and post some photos here for you all to see just how fabulous everyone looks on the day. 

And finally, I've won an award. The Vicky Clement-Jones award for volunteering. Awarded to me by Macmillan for all the work I've done for them.  I cannot even begin to tell you how chuffed I am about this.  It's just a certificate and I'm sure it's handed out to hundreds of volunteers all the time but it means someone noticed what I do and appreciates it. And I'm over the moon about it. And I believe that the may be an expenses paid trip to London to collect the certificate too. I'll take that. :)

Just back from seeing Dallas Buyers Club.  What a fantastic film. Really enjoyed it. And a real tour de force in acting from Matthew.  

That's all. J x