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?

Tuesday, 10 May 2011

A busy couple of weeks

I've had a pretty busy time of it for the last couple of weeks, which is mainly good news as it shows that things are very much returning to normal.

Since my last post I had an additional blood test on Friday 29th April so, whilst most sane people were sitting in front of the telly with a cup of tea watching Kate and Wills make their vows, I was sitting in a car avoiding road blocks heading towards University College Hospital so someone could stick a needle into me.  I have to say that the clear roads (excluding the road blocks) were sheer joy!

Needless to say, the blood test turned out fine and I was given the go ahead to leave the country for a few days, and, equally importantly, the letter to reassure my travel insurers.  Dave and I then went off for a driving tour in France where we stayed in various chateaux and a couple of nights with our lovely friends Dale and Lynn, and their dog Chrissy.  It was great to feel normal and, since very short hair is considered chic in France, not attract any strange looks.  My Sprycel side effects have diminished so that I only feel old and achy when standing up after sitting for a while, or after walking around for too long.

On to yesterday's hospital visit where I had another routine blood test, a chat with the consultant (I'm now back to Kirsty who was my consultant when I had the transplant) and a session on the nebuliser.  All is looking fine and I have been taken off Cyclosporin completely - Yippee!!!  No more furry face and funny tasting wine!  Sadly my super lashes have already all but gone that's a small price to pay for losing all the other side effects.  I have also been signed off for 4 weeks, so long as I get a blood test done by my GP in the middle.  As that's a long time in blog world, I may post after that blood test, which will accompany a cholesterol check which I have been told to get as one of my earlier blood tests suggested that I am rather high on that front!  I hope I don't have to give up the cheese!

If you read my last blog you will have seen a link to my friend Michelle's blog as she was going on a new drug trial. Well, things have not gone quite to plan on that front as they discovered, from blood and marrow tests prior to starting the trial, that Michelle has just moved into what is called the blast stage of CML.  This is serious and she has had to go straight into hospital to start chemotherapy.  The idea is to use chemo to bring her back to chronic stage (like I was) and then to give her a bone marrow transplant.  She is being given a series of chemo referred to as Flagida (you can google it) which involves up to 4 types of chemo in one day.  All of this means that Michelle is facing a longer and tougher battle than I have had and, if any of you pray, please put in a few words of support for her.  I went to see her last Saturday and she is approaching this with her usual amazing strength and humour.  She has been an enormous support to me over the last few months and it is now my turn to do the same for her.  Go for it Michelle and beat this CML into the ground!  I'll keep you all posted on how she is getting on.

Phew, I think that's enough for now.  I'll post again in a couple of weeks.

God bless.

STOP PRESS!  I got a call from the hospital late Tuesday to say that another of my white blood counts had come back and I no longer need to use the nebuliser!  That is great news as it is not much fun and very boring.