The Thomas family

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

Saturday, 10 December 2011

Sorry it's been so long

I apologise for having not posted for so long (8 weeks I think).  I am still here and doing well, just not very good at getting around to doing updates.

Going back to my last post, I had been to the hospital for my regular 6 weekly appointment and they took extra blood for testing for residual disease. The last count had been 0.007% and the latest one has gone down to 0.002%!  Edging ever closer to that elusive zero!

Since then I have been for another appointment where all was well again.  They took extra blood for another test, with the cool name of Chimerase test, which shows how much of my blood DNA is donor blood compared with my own.  The results came back last week and it is 100% donor which is perfect!

I have had a couple of special days since my last post: the anniversary of my transplant on 25 November; and my Birthday last Wednesday (7th) which was a lovely day, a lot better than a year ago when I was in hospital and just losing my hair!  It's amazing to think about how much has happened in that time, and how well I am now.  My time in hospital is just a distant memory.

I am now back at work for my full 3 days (although I have accrued so much holiday that I am actually doing two day weeks for the rest of the year).  It is still surprisingly tiring but that may just be how I am now.

I have been trying to lose some weight as I defied the norm and actually put on quite a bit during and immediately after my transplant (over a stone - seriously).  It was going quite well, if very slowly, but it is a real struggle now with so many Christmas and other events happening.  All I can hope is that I don't put too much back on again!

Michelle's experience over the past couple of months has been very different to mine.  We knew it was going to be a tough fight for her and it certainly is living up to expectations.  In my last report she had gone back into hospital with glandular fever.  She was in for some time and had a pretty rough time fighting it, coming out having, in her words, been to hell and back.  I saw her when she was just starting to feel a bit more normal, but still had bad shakes and no appetite.

The next thing we know she is back in again being given every test imaginable as the tremors are increasing and she is being sick a lot.  It eventually transpired that she had what they believe was viral meningitis in her brain!  It has been a very worrying time but she is now home again and feeling (and looking) much more like her old self.  She celebrates her 100 days tomorrow and I send her my love and best wishes for the day.

I think I've probably written enough for now, so I'll sign off.  As it is probable that I won't manage another post before Christmas I will wish you all a happy and restful festive period and a healthy new year!

God bless,

Saturday, 22 October 2011

Life goes on

OK, this is the longest time ever since I updated my blog.  If there is anyone out there who still looks in on me, I apologise for abandoning you for so long.

With regards to my CML, all has been pretty quiet.  I had an appointment last Monday and my counts are looking fine.  They took 14 vials of blood so that some could be sent off to test for residual disease.  I had 0.007% last time and they are looking for an improvement on that!  I should hear in a week or so.

I have been back at work for 7 weeks now, gradually working up towards my new "full" time of 3 days.  I have got up to 3 six hour days, although my last one, Thursday, turned out to be closer to 8 hours!  It's all very well in principal to say I should stick to 6 hours but a lot more difficult in practice.  I do find it surprisingly tiring and am very relieved when Friday comes around but I think I am coping well.

I have had three viruses since returning, the first I must have picked up the second I arrived as it hit me on the Thursday evening.  The second one took about a week to go and  I did end up popping along to the hospital to check it was nothing serious.  The third lasted one night so hardly counts.  I have to expect this as I am building my immune system up from scratch all over again. Other than that I have been fine.

Michelle news:  the last time I posted, Michelle had just had her bone marrow transplant.  I went to see her the following week and the poor thing had such bad ulceration of her mouth and throat that she was being fed via a tube.  This is normal for the type of transplant she had but not at all pleasant to have to go through.  Her new cells grafted very quickly though and she was out of hospital in record time, after only 3 1/2 weeks compared with my 5!  I have not seen her since she got out as she has been terribly tired and had a few issues with her medication.  And the last I heard she was back in hospital with Epstein Barr Virus, more commonly known as glandular fever.  Again, this is common for transplant patients but you'd rather not have it.  I keep praying for her and looking forward to when I can go to see her.

That's it for now.  I'll try to remember to post when I hear the results of my test, fingers crossed for even more zeros!

Wednesday, 7 September 2011

A major milestone

Yes, I've finally taken the bull by the horns and returned to work!

I had a hospital appointment on Monday and all was well.  I even, finally, passed one of the blood count criteria which indicates that I have a strong enough immune system to be fully out and about.  Probably a good thing when returning to an open plan office and going regularly on public transport.

'Work' is letting me in very gently - I went in yesterday for 4 hours, and will do the same tomorrow.  That will be it for my first week.  As you can imagine, my first job is to catch up with everyone, and clear out my emails, so it doesn't feel much like work yet.

One thing I found out on Monday was that I may get away without a "top-up" transplant, something most people have one or more of, starting around a year after the original one.  If my leukaemia count, which is now very low (0.007%), becomes zero and stays that way after I come off the leukaemia drug, I may not need one, which would be good.  I had just assumed that I would have at least one as that is the normal course of things.  I'm not concerned either way.  I will have another test next visit to see if I have got to zero.

Michelle had two days of chemo, three days of full body radiotherapy and her bone marrow cells last week so, unsurprisingly, she was pretty exhausted.  She is starting to feel a little more normal, a few days in, and we now have the waiting game, waiting for the cells to graft.  Everything is tougher than it was for me and I really feel for her as she goes through this stage.

My next hospital appointment is in 6 weeks time so I'll do an update then, if not before.

Until then, all the best.

Thursday, 18 August 2011

Life is quiet

It's been a while since I've updated my blog so I have a few things to tell you.

Firstly, I've had my latest results on the level of leukaemia in my blood and the results are great!  They came in at 0.006% which is getting to super low levels so I'm delighted with my progress.

I came off my antiviral drug about 3 weeks ago which means I am now vulnerable to viruses and had a 40% chance of developing shingles.  I'm pleased to say that there has been no sign of shingles although I have had a mild virus which was not much at all but did leave me with an ulcerated palate (yum!) for over a week.  That's just about gone now.

I have had my hair cut for the first time since it regrew. Anyone who knew me prior to 2 years ago will know that I have had long straight hair most of my life.  Therefore it is a bit strange to now have very curly hair.  I have attached a couple of pictures to show the transformation.  I am enjoying the novelty for the time being.

I am in discussions with my colleagues about returning to work in early September.  This will be a gentle phased return which is the norm when someone has been off for a long time.  Also, I am planning to return for only 3 days a week, at least to start with.  I have worked full time all of my working life and thought it would be nice to have a little time for myself (I've got to rather enjoy it to be honest).

Michelle's second period of chemo has been totally effective and she is now in remission from her blast crisis and back to chronic phase, like I was.  She has been out of hospital for a couple of weeks and is enjoying the freedom.  We met for lunch yesterday and she is on good form, making a fashion statement with her lack of hair! She will be going back into hospital at the end of next week for her bone marrow transplant on 2 September.  Because of the blast crisis she will have a full transplant, rather than a reduced intensity one like mine, which involves full body radiation!  As always, I'll keep you posted.

I still have over 2 weeks to my next appointment as it has been moved by another week to 6 September.  I'll give you another update then.

All the best.

Saturday, 23 July 2011


Well it is 2 years to the day since I was diagnosed with CML and what a lot has happened since then.  I've taken two different drugs for the leukaemia over a period of several months each, both of which gave limited results, followed by the work up and process of a reduced intensity bone marrow transplant. Treating this illness has involved a total of 51 days in hospital plus numerous out patient visits and an unmentionable amount of time off work.

However, I am now past (nearly) all that and well on the way to being cured! I wouldn't have imagined that two years ago.

I had an appointment at the hospital last Monday and my blood counts are doing fine. They took extra blood for another test of the level of leukaemic cells, as the last sample as slightly poor although the result they did get was very reassuring.  In addition I am coming off one of my 3 remaining drugs, an antiviral, as soon as the packet is finished. This will leave me on penicillin which I will be on for 5 years, and Sprycel, one of the leukaemia drugs I was on previously.  I managed to crack the consultant's shell enough to get confirmation that I am doing very well and have been very lucky!

The downside of coming off the antiviral is that I have a 40% chance of going down with shingles.  Let's hope I'm in the 60% who don't.

I have discussed returning to work with our occupational health adviser and we have agreed that the beginning of September looks likely, once the danger of shingles has passed.  That will be quite a challenge!

Michelle is still in hospital after her second series of chemo and is definitely suffering a bit of cabin fever - hardly surprising since she has only had 2 days at home in the last 3 months and has been largely confined to one room.  Her counts are just showing signs of recovery so a brief time out may be on the horizon before she returns for a transplant.  We are hoping that they will be high enough for us to go to the hospital cafe when I visit on Monday for a dose of normality.  She is still looking and, most of the time, feeling fine and maintaining her strength and fitness as far as the situation allows.

I've now been signed off for another 6 weeks so will not have much to report, although I will give an update when I hear the results of the latest blood test.

In the meantime take care and enjoy the summer.

Friday, 24 June 2011


Just a quick update as it will be a long time until my next hospital visit.

I was called by the hospital with the results of my latest blood test to detect the level of leukaemic cells in my blood, and it came back as 0.04% which is brilliant!  I was told that the sample was not very good and they will redo the test at my next visit but this is still very reassuring, considering that I was at 30% when I went for transplant.

I have also heard back from my GP with the results of my cholesterol test.  It is rather curious as my total cholesterol has gone up a bit and is slightly over the acceptable level, but the increase is entirely accounted for by good cholesterol (HDLs I think) which has trebled over the past 2 years!  Therefore I don't have to give up cheese!  Yippee!

For those of you tracking my friend Michelle's progress, she had her first course of chemo and stayed in hospital for 6 weeks.  She then only managed a couple of days out of hospital before going back in to start her second course of chemo.  This is stronger than the first and making her feel rather sleepy but she was in good spirits when I saw her on Monday, and is looking as though she has been on holiday as the drugs are giving her a great tan!  Hopefully this course will get things sufficiently under control for them to proceed with her own transplant. She will have a "full" version, rather than the reduced intensity "mini" that I had.  In the meantime I am praying that all goes well and she doesn't suffer too much with the treatment.

I'm now off for a couple of weeks of scenic walks and too much food and drink - just what the doctor ordered!  I'll try to post a picture of me with my new curly hair when I get back.  No sun tan though, I have to use factor 50 all the time!

Tuesday, 7 June 2011


Sorry to have to post a boring blog but nothing is happening!  I went for my appointment yesterday and my counts all looked fine so, no change!   I don't have to go back for 6 weeks!  This is, to be honest, partly because I will be away for a fortnight over what would have been my next appointment in 4 weeks time, but clearly they are not worried about me.  It may seem strange to be taking a holiday when I have been "on holiday" for the past 7 months but, of course, the family haven't and we are celebrating the end of A levels for Corina and GCSEs for Tania.

I did raise the thorny subject of returning to work yesterday and will be progressing that line over the next few weeks.  Fortunately the people at work plan to let me in gently as I do not yet know how much energy I will have or, for that matter, how much power of concentration.  The consultant did warn me that both may be severely limited to start with!

Michelle is doing fine but getting fed up with sitting in hospital waiting for her neutrophils (a type of white blood cell) to recover from her chemo, so that she can have a few days at home.  We were celebrating them going from 0.1 to 0.2 last Friday (lots of high fives!) so hopefully they continue to go up to the critical 0.5 she needs at a good rate.

Well, that's it for now. I'll try to post once of twice before my next appointment to keep you updated on things.

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.

Tuesday, 26 April 2011

A bit of a bumpy fortnight

It is a fortnight now since I started taking Sprycel, the drug I was on before my transplant, and it has been a bit bumpy.  As I reported in my last blog, the first day after taking it was pretty bad as I reacted  to it with flu-like symptoms. Fortunately that was the worst of it.  Since then I have been through a period of aching all over but that is gradually easing and is now just some areas (the soles of my feet for example).  It hasn't stopped me from enjoying the fabulous weather though, or having a lovely Easter weekend with lots of visitors.

I had my regular appointment today and it went quite smoothly.  The only thing of note is a slightly reduced platelet count compared with last time, probably due to the Sprycel.  Dave and I plan a brief holiday next week so I have been asked to go in for another blood test on Friday (yes, THE Wedding Day) to make sure that my counts are not on a downward trend before we go.  All else is OK, with no sign of GVHD, and I'm pleased to report that my Cyclosporin dose has been reduced yet again so I am now on one 25mg tablet a day.  This is so low that I'm also stopping a drug I have been on to counteract the tendency of Cyclosporin to raise my blood pressure.

Some of you may have heard me mention my friend Michelle, who also has CML and looked like she was heading for a transplant too.  She has been given the chance to go on a trial of a new CML drug which, if it works, may mean she doesn't need one.  She has been asked to set up her own blog to map her progress, as this is the first trial of this drug in the UK.  If you want to see how she's getting on you can read her blog here Good luck Michelle, I really hope it works for you.

Wednesday, 13 April 2011

Knocked for six


Another slightly late post but I think I have a good excuse this time. I had my usual appointment on Monday for bloods and with the consultant, followed by my session on the nebuliser, followed by a trip to Marylebone High Street for a bone scan, followed by a two hour wait to see the consultant there.  What a day!  I got home at 9pm! 

My bloods were fine and I also had the results of another test for the level of leukaemia in my blood. Sadly it has gone up slightly from 1.7% to 2.3%.  Nothing terrible but enough for the consultant to put me back on the CML drug I was taking before the transplant, Sprycel.  It may seem strange to be a given a drug which was not working for me before but that, of course, was with my old blood.  Now I have new blood and there is no reason to think that it won't work with that.

Restarting Sprycel brings me to my other excuse for not posting yesterday as I reacted quite badly to the first dose, ending up in bed most of the day with pretty bad flu symptoms and nausea.  I'm feeling much better today, just aching all over and with itchy ears!  The good news from Monday is that I have reduced my dose of Cyclosporin again and may be off it soon, and I have been given the go-ahead to get out and about a bit more and even (wait for it) go on public transport!  I have been warned that I will catch more colds than I used to but that has to weighed up against getting my life back to some sort of normality.  I'd already done a bit of that by going back to church for the first time on Sunday which was lovely.

The only other thing to report is my Look Good, Feel Better session a couple of weeks ago.  There were about 15 ladies with various cancers there at a variety of different stages of treatment.  We were run through a session on skin care and make up (a bit like teaching your grandmother to suck eggs but I picked up a few tips and an updated approach to my make-up) with numerous therapists to help out. It was very nice to be pampered a bit and to be sent away with a bag of goodies donated by cosmetics companies.  Things were a little awkward when we got to the eyes as I was sitting there with my lush lashes and eyebrows, surrounded by women who had neither!  I'll definitely miss the super eye lashes when I stop the Cyclosporin.

Next visit to the hospital will be on Tuesday 26th due to the Monday being a bank holiday so I'll update you then.

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.

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.

Monday, 24 January 2011

Another appointment day over

Today was a straightforward appointment day.  The normal procedure is that a car arrives to take me to the hospital and we sit in traffic jams for an hour or so.  On arrival I give blood and am given a copy of the immediately available results to take in when I see the consultant, Emma.  I then sit around for a while reading the paper,especially if it is very busy like today.  When I see her I tell her how I think things are going and list any new or ongoing symptoms since last week.  She then adjusts my treatment if required.  If the blood results which come in later indicate any other changes are required, I'll be phoned by Heidi, the transplant coordinator with further instructions.  This happened last week when I was asked to reduce my Cyclosporin slightly.  Then I order a car to get me home again.

Rather annoyingly, I was due to stop the steroids I have been taking to control the GVHD rash today but woke up to a new rash on my shins so I'm on them for another week.  Fortunately it is a very low dose.

That's it really.  My blog is in danger of get rather boring but I suppose I should look on that as a good thing.  I was chatting to a patient who has just passed his 100 days since transplant and realise that it goes on like this for some time yet.

Anyway, it's enough to tire me out so I'll sign off now.  Next appointment next Monday as usual.

Monday, 17 January 2011

A long day

I had a day full of hospital appointments today, starting with a heart echo at 11am, an appointment with the consultant at 2pm and a session on the pentamadine nebuliser at 3pm.  Finally got home at 6pm.  All seems to be going well with another minor tweak of my anti GVHD steroids (downwards which is good).  Now I'm pretty tired. 

I've also spent a lot of time being driven around today, as the echo was in a different location to the other appointments, and had a variety of drivers to match.  I was taken in by a Lithuanian driver with very strong opinions on lots of things (mobile phones, GPs and benefit cheats were among those in his firing line!).  I just grunted at the appropriate times after a while.  He's a firm believer in the medicinal qualities of a good Cognac, though, so it's not all negative!  Then there was the retired fireman who only needs 3 hours sleep a night and has achieved more by the time I wake up than I do in an entire day!  It takes all sorts.

I am experiencing some interesting side effects from my current list of drugs, in particular a constant taste of salt on my lips, as if I've just eaten something salty.  I don't know what is causing it but hopefully it will go away when I stop the steroids. The other is a well known side effect of Cyclosporine which is to grow excess downy hair on my face.  I'm beginning to feel a bit like a teddy bear!  Fortunately it stops as soon as you stop taking Cyclosporine so it won't be here for ever.

That's all for now, next appointment next Monday so do look in for an update.

God bless all.

Tuesday, 11 January 2011

Happy day

Oops, a day late updating my blog since my latest appointment was yesterday.  All is still going well and, joy of joys, my PICC line was removed!  It is so good to be able to wash my right elbow for the first time in 8 weeks!  I finally found out what PICC stands for - it is Peripherally Inserted Central Venous Catheter - but essentially it was one tube containing three separate fine tubes which ends in a vein at the top of the heart and emerge from the arm near the elbow.  For the past 8 weeks it has been the access by which blood has been taken from me whenever required, and to administer all intravenous drugs.  It has served me very well, and been very well behaved (I gather), but I can't say I'm sorry to lose it.  Blood tests will be taken in the traditional way (ie by needle) from now on.

In terms of my progress, there have been a few tweaks to my drugs to help keep my GVHD under control.  My cyclosporine has been upped slightly and I have a little more time on the steroids, but at a lower dose.  Nothing dramatic but a further reminder of what a juggling act the whole process is at this stage.  It is now 47 days since my transplant so I am nearly half way through the initial critical 100 days.

Anyway, having left this a day late I have to tell you what a delightful day I had today.  Our lovely friends Peter and Katie, who have been mentioned a few times in this blog and visited me a couple of times while in hospital, got married today and Dave and I were honoured to be invited and to be witnesses. They had 14 guests including us, all of whom had to be vetted to ensure that they didn't have any infections which I might pick up! It really was a special day and we left them entertaining more guests (time to exit stage left as I was pretty tired and had probably pushed my luck enough in terms of exposure to germs!).  All of our love and best wishes Katie and Peter.

Tuesday, 4 January 2011

Happy New Year

Here I am freshly back from my second appointment at the hospital since my escape.  All is still going well and I am feeling good.  The one event which I had to report is that the rash, which was relatively low level when I was released, has blown up in the last couple of days and keeps on appearing in new areas.  The worst places are the palms of my hands and soles of my feet as it is a little like extreme pins and needles too.  Also the dreaded puffy eyes are back

This is a manifestation of the battle going on between my old and new immune systems at the moment with my body as the battle ground!  The technical term is Graft Versus Host Disease (GVHD) and we want some of it, but not too much.

I have been given a short course of steroids to nip this in the bud (hopefully) as it is proving increasingly challenging to keep up with the rash with cream alone (there is a new patch every time I look!).

I hope you all had really great new year celebrations (mine were very quiet - Dave me and Avatar!) and wish you all the best for 2011.

Next appointment next Monday, 10 Jan, so look in then.