The Thomas family

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

Wednesday, 30 March 2011

Long time no see

Sorry I'm rather late in updating my blog.  I had a very long hospital day on Monday (home after 7.30pm) and yesterday, having done a couple of hours of gardening, spent the rest of the day in an exhausted blur (or asleep)!

My regular appointment on Monday went well, with all my blood counts looking good (they almost look normal!) and, as the rash has been behaving itself, I have had my Cyclosporin dose reduced a little.  I felt a bit guilty chatting to a fellow patient who had his transplant two weeks before mine who is still struggling with neutropenia (very low white cell count) and having to get his wife to inject him with a stimulant to get the cells to grow.  He has a different form of leukaemia (CLL) which may account in part for the difference.

After my regular appointment I had to go to Marylebone High Street for another appointment ("girl stuff" - 'nuff said).  As there was a big gap between appointments I had a good wander around the very posh shops in Marylebone High Street.  Lovely but does anyone really pay £115 for an umbrella?  That appointment went well too and  I have to return in a couple of weeks for a bone scan, meaning another long Monday of appointments.

This afternoon I have a treat I have been looking forward to.  Ladies with cancer are invited to sessions called Look Good, Feel Better, which are sponsored by the cosmetics industry and are about regaining your confidence in your appearance (loss of hair etc doesn't do much for it I can tell you).  See, it's not all bad!  I'll tell you more in my next blog.  I even get a car to take me and bring me back, all part of the package I'm told.  I hope it's the stretch Audi that took me home on Monday again.  I am not really at a holiday camp - honest!

Thanks for the comments about the purple wig, but I don't think it will be appearing too regularly!

Tuesday, 15 March 2011

It had to happen

I finally caught a cold, or some other virus as I do not have all the normal cold symptoms.  At least I waited until after the critical first 100 days!  Fortunately it is not very bad and I mainly feel just a little under the weather and have a sore mouth from ulcers.

I had my fortnightly appointment yesterday and went along with an overnight bag in case they kept me in, but they were not unduly worried and let me go!  I met my new consultant, Rachael, which means that I have now met the whole team.  There are four of them who rotate on a 2 monthly basis and they are Karl, Kirsty (who looked after me while I was in hospital), Emma and now Rachael.  Also I have a new transplant coordinator, Sarah, who was one of the senior nurses who looked after me while I was in, as Heidi has just gone on maternity leave.  I wish Heidi luck and plenty of rest!

I also had my monthly session on the nebuliser yesterday which was a bit boring as my Kindle's battery had died so, having written a couple of texts, the only entertainment was staring at the wall for half an hour!

Anyway, that's my appointments over now for another fortnight.

And finally, after a very long wait, I have finally summoned the courage to post a photo of me in my Kick Ass purple wig that the girls gave me for my birthday in December.  Only nice comments please.

Tuesday, 8 March 2011

100 Days!


No hospital visit this week but I passed a major milestone last Saturday so I thought I'd do a post to celebrate.  I have now passed 100 days post transplant.  The first hundred days are considered to be critical so passing that point is a good thing.  My GVHD is now called chronic instead of acute!

Michelle brought round the most enormous balloons to mark the occasion. Here are some photos to celebrate.

100 day hair (and eyelashes if you look hard)
Michelle with balloons

Tuesday, 1 March 2011

It's been quiet

OK, apologies for not updating for two weeks, even though I said I would try to.  It has been very quiet and I've just not had anything to report - the rash has been reasonably well behaved and I've had no phone calls from the hospital to tell me to change my drugs so what did I have to say?

Anyway, I did have an appointment yesterday so will give you an update now.  One of the main points is that my regular blood counts have dropped a little, but not to a worrying level.  This is due to me no longer taking any steroids which were boosting some counts.  I have been feeling more tired and easily exhausted in the last couple of weeks so it is a relief to realise that there is a reason for this.  I'll have to build up my strength under my own steam now rather than with the help of steroids! 

Also, they had the results of the Chimerase test which measures how much of my blood is my old stuff and how much is the donor's.  I'm delighted to report that it is all the donor's, which is a very good thing.  My blood is now officially A Negative when I was previously O Positive!  It's a strange thought that I will spend the rest of my life with different DNA in my bone marrow and blood compared with the rest of my body.

Finally, I have to report a little thing and apologise to my family who are fed up with hearing about it.  I was actually complimented on the length of my eyelashes the other day!  For someone who has always had short and nondescript eyelashes this is a real treat!  Sadly, this is due to the Cyclosporin so will only be temporary but it is good while it lasts.  I can also say that I am no longer blond.  The hair that is regrowing is definitely much darker (if you ignore the grey) and I gather that is likely to be permanent.  I might have to consider getting it coloured for the first time in my life.  I'll post a photo soon, when I am feeling brave enough.