The Thomas family

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

Tuesday, 31 May 2011

It's been a while

It's three weeks since I last posted a blog.  Apologies to anyone who has repeatedly looked in to find no updates but there hasn't really been much to say!  It is getting almost embarrassing how many people keep telling me how well I look!

At my last visit I was signed off for 4 weeks as long as I got a blood test done by my GP in the middle.  That is not quite as straightforward as it sounds.  First I contact the GP's office and they produce a form which I go and collect.  Then I take that form to one of my local hospitals to get the test done and they then send the results to my GP who passes them on to University College London Hospital, where I am treated.  I went to Orpington hospital last Tuesday at 8.30am (when I was told the department opened) to get the test done and was confronted by more than 30 people already waiting! 45 minutes later I was seen and told my results would be with the GP by Thursday.  That's the last I've heard of them - a bit of a change from having the results in my hand within two minutes of giving the blood as happens at UCLH!  Anyway, I'm taking the "no news is good news" view as I'm sure I would have been called if there were any problems.  I also had a cholesterol test done and, as I have not been summoned by my GP, am hoping that that is also OK. I presume all will be revealed next Monday at my next proper appointment.

In the meantime, I have visited my friend Michelle several times since she was admitted to Hammersmith Hospital for treatment of her blast stage CML.  She had six days of chemo at the beginning of the month and since then it has been a waiting game as they watch her white blood cell count drop to zero (which is necessary) and then climb back up again.  Last news was that they were finally off the ground again and she soon may be allowed a few days home before they start the whole process again.  She has been looking very well when I have seen her, and is keeping her spirits up as I would expect a fighter like her to do.  She is one of the fittest people I have ever met which should stand her in very good stead with this battle. Here is a picture of her taking her hair loss very seriously. She had shaved the lot off by the time I saw her last Friday.

One other thing which I have been thinking about a lot is the recent recommendation by NICE (those not-so-nice people who decide which drugs will be paid for by the NHS) NOT to recommend the next stage drugs for people whose CML is resistant to the standard first line treatment Glivec.  I am currently on one of those second line drugs and know that they can completely give back someone's life, not just prolong it for a few months, when the first line fails.  The final decision is to be made at a meeting on 9 June and, as you can imagine, loads of people have been lobbying MPs and talking to the press to try to get them to change their minds.  It is not easy to get much attention for such a rare cancer but these really are "wonder drugs" and are even available on the NHS in Scotland!  There is a petition which you could sign if you want to add your support although I think it will be closed very soon so please don't delay.  Here is a link to it:
Let's hope that NICE see sense here and change their original recommendation and agree to make the drugs available.  If not, it does make you wonder what all the amazing achievements in cancer research are actually for?

1 comment:

  1. I don't understand how THEY can withdraw a patently successful treatment. It shouldn't matter whether the illness is common or rare, success should be the deciding factor especially when long term benefits to patient health mean presumably lower costs to the NHS. We may have to face that one day in France but for the moment all is paid for, except false teeth! Hope this is truly a no news week! Love Lynn and Dale xxx