Wednesday, January 15, 2014

So Where Were we?

Well, DD has returned safely and is full of tales of derring do and adventures had and abysmal English performance.  But it's good to have her home and she's swung right back into her caring duties by accompanying me to The Christie today (see below). 

Before that however I made a flying visit to Swansea as father had to go into the eye clinic for tests (he'd been referred by his optician). This all happened very quickly and as I already had a Macmillan meeting I'd committed to on Monday afternoon, I had to drive down to Swansea on Monday night and then drive back to Manchester Tuesday night ready for today (see below). The journeys were horrendous. I was driving in the dark for both of them and it was raining for most of the way for both of them and there were hundreds and thousands of lorries on both of them.  To cap it all, going down, there was an accident just outside Birmingham and a football match involving Aston Villa which added about 2 hours to my journey.  Hell.  Nevertheless I was glad I was able to go down and support Dad.  He's really worried that he will be told that he can no longer drive and I have to say it's looking increasingly likely that this is what will be the outcome.

They tested his eyes at the hospital by injecting him with a dye and then photographing the back of his eye.  The consultant who we saw (and don't get me started on what a pompous idiot the man was) said that Dad has "atrophy macular degeneration" at the back of his left eye (a by-product of ageing) and possibly "wet macular degeneration" there as well (this is where the veins behind the retina grow through the retina itself and cause bleeding in the area).  This, obviously, interferes with Dad's vision.  There is a treatment that will stop the bleeding but not get rid of any of the material that has accumulated. This means the treatment won't improve his vision but simply stop it getting worse.  Dad now needs to go back to the optician to see if there are lenses that can bring his vision up to driving standard.  Dad has already booked an appointment so we should know soon. Fingers crossed because the ability to drive gives Dad a lot of independence.

So got back to Manchester last night absolutely knackered, had a small martini (honestly) to calm me down and then had the best night's sleep I've had in ages.  And so off to The Christie this morning, with my trusty carer by my side to find out what's what with the trial and stuff.  We didn't have hundreds of questions to ask because the information leaflet we had been given was fairly comprehensive.  So here's what we know - 

The trial is described as a Phase II trial and is fairly small scale.  There are approximately 9 people in the UK taking part and about 180 people worldwide.  There's a 50/50 chance of getting the regular chemotherapy (docetaxcel) or the new drug (MPDL3280A). The chemotherapy consists of 4 cycles of 3 weeks each (about 3 months) whereas the new drug consists of 16 cycles of 3 weeks each (about a year). And whilst I'm undergoing treatment I'm not to travel abroad. Although I can continue to drink alcohol.  And God knows I'm going to need to drink alcohol to make up for not being able to travel! But that does put the boot into the plans to go to Istanbul and New York this year as well as the family timeshare in Portugal. Hey ho, hopefully next year then....

I'll need to have a CT guided biopsy first so that they can collect some of the malignant material to examine in the lab and that has already been arranged for next Monday and will involve an overnight stay at The Christie. This will be my first overnighter at The Christie. Let's hope it all goes smoothly. And then I have another clinic appointment for next Wednesday which will wrap up all the other tests - ECG, echocardiogram (not the same thing apparently) etc - and then it's full steam ahead.  Dr Metcalfe, who we saw today, was very nice and certainly knew his stuff which is always encouraging, even if he did only look about 12.... So I'm thinking that treatment (of whatever sort) will start about 05/02/14. I'll let you know for certain once I know and then I can map out my good and bad weeks so that everyone knows when they can talk to me etc :-) 

And that's all for now.  Any questions, please direct them to myself or Carer Headquarters at DD Central.  J x

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