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.