Saturday, 29 September 2012


Well, Wednesday's hospital trip was rather impressive.

1) due for scans at 8.30am. Told wasn't booked in, but would do them anyway. Then sonographer said I didn't need them until November, that someone at RA clinic had bodged up, and sent me to my RA appointment.

2) consultant at RA clinic said I DID need them as it's the end of my first year on this trial and that I need to come back on Monday - at 8.30am again. Joy.

3) long talk with consultant, lots of proddy tests on my poor old bod. Consultant agrees with Doc that I also have fibro. Goes to talk to The Prof (the big boss).

4) The Prof appears and is fabulous as usual. Decides I would 'be fabulous' for a new trial, with infusions of Tociluzimab (Altizumab)(ProActemra) - a relatively new drug, very difficult to get on the NHS but available now via trials.

More on this to come, it is a VERY interesting and potentially very exciting drug for RA sufferers. My consultant - The Prof - is one of the top bods in the country / Europe / world for RA, and as it is a teaching hospital they have excellent access to trials.

5) I have the usual 8 phials of blood taken (literally), X-rays of feet and hands, weight (lots), height (little), waist (fat), hips (fatter), ANOTHER proddy test with a different nurse etc etc.


I left with an appointment for the damned scans on Monday, and will be getting an appointment for The Trial in a month, then one for a carpal tunnel injection into my other wrist asap, another one with Oc Therapy for night time gloves and soft splints for my hands.

Next time I think I will take a duvet, pillow and teddy. Bear, not lingerie.

To be eligible for the New Trial I have to have been on meths for at least a month - they have taken me off the injections (hurrah!) and put me back on tablets, but with strict orders to take the stronger anti-emetics regularly.
I had them on Thursday (takes Thursday's tablet total to something silly like 5 thousand), so far exhausted but OK.

Right - craftiness.
Things have progressed considerably since I took the following pics a couple of days ago-
this cardi for my daughter is now finished apart from buttons, which have been ordered.
The needles are blissful - Pavi needles, smooth but most importantly, light. And pretty.

I also started knitting a mega chunky cabled jumper for her - last night - and am already up to the armhole shaping on the front! This thing grows when I turn away, I am sure of it.

These little stitchery munchkins arrived so I have no reason other than utter ineptitude for messing up my next attempt at the crewel work - will have to rummage for some more substantial fabric tomorrow.

And I bought two of the new Louisa Harding booklets, which although a bit 'samey' (which is why I have not ordered this year's winter Kim Hargreaves, same old same old) still have some rather knittable patterns.
I particularly like this kimono-esque one, could be very flattering. There is also a lovely jumper in the other booklet but the photo I took is too blurry.
And I have many of these. And plans.
Right, that's enough for now, I am sure you are nodding off.
Enjoy the weekend x


1 comment:

Stickmamma said...

It is so nice to read your blog. Even tough it is tough times, I can still se you. Keep on fighting!
All the best, Kerstin in Sweden