The Thomas family

The Thomas family
From left to right, Tania, Dave, me and Corina

Tuesday, 15 February 2011

A particularly good day

Hi all, apologies for not posting yesterday, I just didn't get around to it.  It was a pretty full day for me.

First of all I went up to London early and met up with Dave for a Valentine's lunch.  Getting there was fun as the driver was given the hospital address rather than the restaurant address (even though they were happy for me to go to the restaurant) so we went sailing past Soho until I pointed this out.  Then he thought I said Fleet Street instead of Frith Street so we passed Soho again!  Fortunately I had plenty of time and finally arrived at the appointed restaurant at the appointed time!  Dave had requested a quiet corner which we got.  The lunch was lovely.

Then Dave and I walked to the hospital as it was such a nice day and we needed to walk off the enormous meal.  It was about a mile and a half which is probably my limit at the moment.

At the hospital I had 14 vials of blood taken, I think that is a record, as 8 were for something called Chimerase testing.  This is an important test as it measures how much of my blood is my old stuff and how much the donor's.  If there is too much of mine they give me a "top-up" transfusion from the donor to help things along. 

Then I saw my consultant, Emma. My rash has been behaving quite well so no need to go back on the steroids and I was taken off one more drug, for my stomach as I have not been having any problems there.  I am now down to 4 tablets in the morning and 3 in the evening which is quite manageable.  And I have been signed off for two weeks!  So I won't have to go in next Monday unless something comes up.

Finally, the results from the missing blood had miraculously appeared and they were very good news.  My last 2 tests of this sort (pre transplant) showed the percentage of leukhaemic cells in my blood as 30% and 45%.  The results for 17 January were 1.7%!!!  This is largely down to the donor immune system mopping them up which is brilliant news.  Since we thought the blood had been lost they took more last week so I'll have a second result in a week or so's time which hopefully will back this up.

Then I had my monthly pentamadine nebuliser before heading home during the rush hour and getting back at 6.15m.  For anyone who doesn't know what a nebuliser is, the best thing to think of is the caterpillar in Alice in Wonderland, although there is nothing recreational about pentamadine!  I have this to protect me from an opportunist infection known as PCP (a form of pneumonia).

So a pretty full day but lots of good stuff.  My next appointment is 28 February but I will try to do an update in the meantime, especially if I have anything to report.

All the best.

Monday, 7 February 2011

Onwards and upwards

Well, that's another appointment day over and again, all is well.  I'm delighted to say that the rash has calmed down so much that I have been taken off the steroid tablets completely, just relying on the steroid cream to control it.  I hope that lasts.  The real bonus is that I can also stop taking another medicine which is a syrup which has to be taken on an empty stomach.  I've been having to get up very early, take a dose, and go back to bed rather than get up and take it and then have to wait for my breakfast.

One frustration is that three weeks ago I had extra blood taken to be sent to Hammersmith Hospital where it is tested for the level of leukaemia in it.  This will be the first evidence of how the transplant has really worked.  Sadly the sample never arrived so I didn't get the long awaited results today.  They took more blood today and couriered it to ensure that it does not go awol again, but that's another two weeks wait for the results.  Oh well!

It was lovely to come home to a beautiful bunch of flowers sent by my friends at my carving group, the Woodentops.  Many thanks everyone, they look and smell lovely.  I am hoping that I may be able to get along to the next meeting at the beginning of March.

Also, a mention for Nicola who was my girls' nanny for several years and who posted a comment last week.  Lovely to hear from you Nicola and I bet Elliot has changed at least as much as the girls have!  My email address is and it would be great to see photos of the brood, and to have a proper catch up.

Next update is next Monday after my appointment.  In the meantime God Bless to you all.

Tuesday, 1 February 2011

And another one down

Well that's another of my Monday appointments over with no major dramas.  I had a bit of a Cyclosporin spike last week so was called and told to miss a few doses and then reduce the regular dose - all part of the fine tuning!  I'll find out today (Tuesday) if my levels are still high and I need to reduce the dose further.  I have been asked to collect my urine over a 24 hour period to check my kidney function - mmm that will be fun.

They're also weaning me off the steroid which I've been taking to control the GVHD so I'm now on one 5mg dose every other day, and have been given tiny 1mg tablets so that we can fine tune further if required.  I still have the rash which is evidence of the GVHD in various places on my body but it has calmed down, with the steroid and steroid cream I use.

My hair is showing good signs of growing back.  It's a bit strange as it is dark on top and fair at the sides so I'm starting to look a bit like a badger,what with the furry face too!  Apparently it is a mystery what people's hair will grow back like.  It is highly likely that I will change from straight fair hair to curly dark hair (my mother's hair type), although I suspect whatever result will have a heavy smattering of grey.

Thank you to everyone who is continuing to send emails and comments, it's great to hear from you and I apologise if I don't reply to them all.