The Thomas family

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

Tuesday, 30 November 2010

Bit of a white-out

I woke up this morning, no doubt like the rest of you, to blizzards outside my window.  It's nice to know I don't have to commute in that for a while, although a bit of a high price to pay for that privilege.

I saw the consultant today and she is impressed with how I'm doing, saying many are flat out at this stage while I'm not feeling too bad at all. The one big downer is my gut which kept me up half the night and there is very little I can do but live with it.  Poor Dave only saw me for about half the time he was here as I was in the bathroom for the rest of the time!  OK too much information.

They are all waiting for my temperature to spike which is 99% likely to happen.  The later it does happen the better though as the cells will have had longer to get on with their work.

Sorry about being a bit downbeat today, hopefully better tomorrow.

God bless and good night.

Monday, 29 November 2010

It's official!

Yes, I am officially neutropenic now - in fact I've gone the whole hog and have no neutrophils at all!  This means that I now have a yellow warning sign outside my room to tell anyone coming in.  It also means that any visitors must wear an apron as well as washing their hands and using the gel.  We are keeping visitors to family only (plus Michelle who counts as family) for the time being as the higher the number the more chance someone could bring in a potentially dangerous germ.

I know it seems strange that I am excited about achieving a normally highly undesirable state.  However, it is a necessary part of my process so it is one more milestone on the way to the cure.

Fortunately it still hasn't had a significant effect on my general wellbeing so I'm still standing.  I even managed a record number of rows of my knitting.

Dave joined me for the evening but I put the girls off due to the tube strike.  I see them next on Wednesday.

Sunday, 28 November 2010

One more quiet day

This blog is in danger of becoming rather boring as so little is happening at the moment, but I think it is all about to change.

My counts are now borderline neutropenia as the lead time for destructive powers of the chemo, which prevented new cells from being produced, will run out (ie no new cells arriving when due).  I will start having to receive blood transfusions, thanks again to the selfless people who give blood, and am prevented from eating a wide variety of foods.  Think about the restrictions on pregnant, elderly, vulnerable people and add a few more banned substances which may bring in germs, eg salad.

So far my appetite has been great so I suppose at least the restrictions come when it is likely to fall away.

First Sunday of Advent today so I'll have to imagine the first candle being lit and imagine singing all my favourite carols.

More news tomorrow...

Saturday, 27 November 2010

Another OK day

The docs are pleased with where I am at the moment - appetite and white blood cells still holding up and not yet suffering the effects of neutropenia (very low defensive cell count) which comes with its own list of discomforts!  And so far my hair is still holding strong too.

It was a nice family day with all of us in the same room doing our own thing (me sleeping for much of it).  We don't even manage that at home!  The highlight was a "picnic" lunch, we moved en masse to the reception area on this floor to eat our lunch as my room was being cleaned.

Also I'm turning into gadget queen with the arrival of an Amazon Kindle to join the other electronics all around my room.  I really have no excuse to be bored!

Thank you Catherine for your instructiions on posting, along with words of Chinese wisdom!  Please see yesterday's comments for further guidance.

I know I am in danger of rubbing it in but I am glad that I am not out in this freezing weather - it just looks pretty from my window. Sorry about that.

I have a bit of a headache tonight so I don't think I'll last much longer before tucking up for the night.

Sleep tight all, and God Bless.

Friday, 26 November 2010

Feeling pretty normal today

I'm now in the waiting phase and it's not been a bad day today, the day after I received my cells, and I've been in quite buoyant mood.  I've been feeling reasonably normal, give or take a few gut issues which are a side effect of one of the chemos.  I will continue to have daily Cyclosporin for a considerable time but have now got the drip time down to 3 hours, trying for 2 tomorrow.

Dave spent the morning with me.  After lunch I had a snooze followed by a reflexology session courtesy of the supportive therapy unit - mmmmm!  And Michelle came to see me for a good chat. 

Long may this bit last!

I'm still at a loss about posting comments and really appreciate those of you who have tried and failed, as well as those who have succeeded.  Thanks for trying.

Thursday, 25 November 2010

The big day!

Yes, today is the day I got my cells so it is known here as Day 0, or my Rebirthday according to Michelle.  They consisted of one bag of something one of the nurses described as Slush Puppy.  I looks like pink blood really.  It was given to me over 45 minutes and, apart form a brief mild reaction which was sorted immediately, was remarkably uneventful.  Something of a spectator sport though with The transplant consultant Heidi, staff nurse Darren, shadowing nurse Tania and Sister Kath all in the room with me and Dave who came to witness the great event too.

I have to say a HUGE thank you to my anonymous donor who supplied these cells, and to everyone who is on the bone marrow register and may give someone the chance of life in this way.  My donation was from a Matched Unrelated Donor so I really am now a Mudblood!

Now it is down to my body, the donor cells and the skills of the staff here working together to help me through the next couple of weeks as we wait for the stem cells to engraft and start producing their own white blood cells.  I still find it amazing that at the end of this I will have changed blood group from O Positive to A Negative!

I have been warned about one other really strange thing - apparently I will smell of sweetcorn for the next few days!  Bad news for Corina who doesn't like sweetcorn.

It's been quite an emotional high today, knowing this is really the start of my cure, so I think I'll be retiring to bed early tonight.

My sister Rosie has given some instructions on how to post comments (under Anonymous) after yesterday's posting, which may help those who want to give it a try.

Thanks for reading and good night to you all. x

Wednesday, 24 November 2010

I've been here a week now...

...and it feels like a lot longer.  I am now feeling the effects a little more, in particular in my energy levels which have gone right down, and I'm a bit shaky, but it's nothing too bad. My days of eating out are over for a while though, the prospect of going out in that cold is too much for me.

I have discovered a curious side effect from the treatment - my sense of smell has gone right up!  I am conscious of everything!  Weird huh?

Thank you everyone who has emailed me, sent cards or made comments on this blog - it is lovely to hear from you and I really appreciate your thoughts and prayers.  I apologise if I do not answer every email, it can get quite tiring, but I do like the contact with the outside world.  If you have successfully posted a comment please could you let me know how as some are struggling. Is it something to do with needing a iGoogle account or similar?

I think I'll have an early night tonight - it's my big day tomorrow so I'll let you know it goes then.

Tuesday, 23 November 2010

Chemo over

Well I had my last dose of chemotherapy today so that's me well and truly conditioned!  Actually, the fun really has still to start as all that stuff gets to work on my system. For those of a medical bent, the chemo I have had was 5 days of Fludarabine and Campath followed by one day of Melphalan.  For those of you without, apologies for that temporary step into medi-speak.  Of course, the chemo has been supported by a barrage of steroids, anti nausea/viral/fungal/anything else drugs plus my good old Piriton.

To be honest, I spent a large part of today dozing so I haven't got lots to report.  I was visited again by Peter and Katie.  It was lovely to see them again, and Peter even brought me a cappuccino as I had been missing them.  Katie starts her own radiotherapy treatment on Thursday so I have challenged her to a race to see which one of us loses her hair first!  Healing thoughts and prayers going out to you Katie.

Dave also came to see me and brought me some lovely artificial roses in a beautiful vase (as real flowers are banned) plus a talking clock so I can tell the time at night!  Thank you Dave <3.

I have a "day off" tomorrow but that doesn't mean I get away without a drip as I start on the anti-rejection drug Cyclosporin which will take 6 hours to administer, starting very early.  Early shower for me then.

Monday, 22 November 2010

Day 5 of conditioning

I finally got my X-ray done at 11.50pm last night and it appears there is nothing to worry about.  Keeping me up is certainly one way to ensure that I sleep well in hospital! (Piriton at bed time is another!)

It was lovely to have a visit from my "oldest" friend Catherine today - we chatted for hours and hardly scratched the surface.  It's strange that one of the blessings of something like this is that it makes you really appreciate the importance of friends and keeping in touch.

I had my final day of the first 2 chemo drugs today, a different one tomorrow which I hope is a lot quicker to administer.  I have been feeling a bit like I have mild flu all day but it didn't stop me going out for dinner again with Dave and the girls.  I know it must look like I'm at a holiday camp with all these visitors and meals out but I'm making the most of it while I can.

Off to bed now, the Piriton is starting to work.

Sunday, 21 November 2010

Sunday and more fun

I woke with no rash but a highish temperature, rather curiously 0.8 degrees more in one ear than the other!  The doc has requested I have a chest Xray today to ensure I am not brewing an infection.  That was early this morning.  It is now 11.00pm and I still haven't been called for it but the doctors did say there was no great urgency. 

Otherwise it's been a pretty good day.  Dave and Tania arrived about midday so we sat and read the Sunday papers together while I had my drip.  Then my CML buddy Michelle and her husband Chris came to see us fresh from a 10k charity run.  Michelle was diagnosed 6 weeks after me and is fitter than nearly anyone I know.  See, we may have this illness but it ain't going to stop us living our lives to the full!  Michelle has been a huge support for me over the past year, as someone who totally understands what I am going through.

I got permission to go out for dinner so we all popped out for an Ultimate Burger - see picture taken by Tania.

Saturday, 20 November 2010

Busy Saturday

It's been a good day today.  I've had visits from friends Christine and Heather, who then went off to a show matinee, and Dave and Corina.  The hospital dinner was really quite good.  And, Tania, I've so far managed to avoid "death by custard", the hospital habit of destroying any flavour in a dessert by drowning it in vast quantities of bright orange custard!  It will happen on the day I forget to write NO CUSTARD clearly on the menu - it's only a matter of time.

I'm now tolerating the drugs with few side effects so could be given them at the maximum dosage rate.  All drips over by 3.30pm.  Which meant that I had the chance to go out for a stroll of a few furniture shops in Tottenham Court Road with Dave.  The rash comes and goes but not as bad as at first.  It doesn't really itch fortunately, just not pretty!  I have developed a new respect for antihistamine.

I'm now in for a quiet evening of telly, knitting and reading. Still keeping the boredom at bay so far.....

Can you believe it?  I just did a spell check on this and it suggested Duodenum to replace Tottenham!

Friday, 19 November 2010

Much easier today

The experts were right - today was much easier then yesterday.  I did develop a pretty good rash in the night, another common reaction to one of the drugs.  Piccy of said rash attached before it reached its worst when all the spots merged!  It is much better now as I get regular doses of Piriton.  All intravenous treatment finished by 6pm today, somewhat better than 3am for yesterday's lot.

One interesting side effect is to the steroids I am being given - I'm constantly hungry! So far I have put on weight since being here!  Oh well, enjoy it while I can.

So all quiet today. Looking forward to the weekend visitors.

Thursday, 18 November 2010

Wow, things have really started now

Day 1 of my "conditioning" (goodnesss knows what condition I will be in by the end of this phase!) which is killing off my immune system with chemo. Farewell old friend, you have served me well (OK except for the CML traitor in the ranks).  Anyone who has worked with me knows that I rarely catch anything and now I'm having to say goodbye to that.

It's been bumpier than I anticipated as I reacted to one of the drugs and ended up with a temperature of 40C and symptoms like a major flu, but the Wizards here have sorted that out and I feel nearly my old self again.  I had to cancel the dinner date though (sob).

I gather the first day of conditioning is the worst so hopefuly the next few days will be easier.

Love to Peter and Katie who came to see me and are now at the restaurant, and of course Dave who is being my rock and the girls!

Wednesday, 17 November 2010

Well I've arrived

I'm now installed in my room at UCH.  I arrived this morning and spent some time trying to find homes for all of the stuff I brought with me to spare me from the dreaded boredom.

The main "hospital" event of the day was to have a PICC line installed in my arm, to give direct access to my veins so I don't have to be continually stabbed with needles.  It was done in a department which revels in a name something like "Human Intervention" by staff who were all wearing lead waistcoats and skirts which, somewhat randomly, were in Blackwatch tartan!  It was a bit like being at a Scottish wedding!

The family arrived to see my new home and we went out to Ask for dinner.  I can enjoy these little freedoms for the first few days while my immune system is not compromised, although wine will be off the menu once treatment starts.

First day of chemo tomorrow....

Tuesday, 16 November 2010

Day T minus 1

My last day of freedom before I get incarcerated for a few weeks!  I've just had my hair cut very short in anticipation of its disappearance in the near future.  I'm actually quite pleased with it.  Considering I had long hair a year ago it's amazing that I now have about an inch, and like it!  I'll post photos when I have worked out how!

I'm going in about 10am tomorrow so will give an update from my room once I get there.  That's once I have got the technology to work.

Before and after haircut photos now added - not quite Emma Watson!

Monday, 15 November 2010


Hello and welcome to my blog.  I have set this up so that I can keep my family and friends up to date on how I am doing as I go through my bone marrow transplant to cure my chronic myeloid leukaemia. 

The first thing I'll introduce you to is a whole new world of TLAs (three letter abbreviations) so from now on I am going to talk about BMT and CML.  In fact, officially, I am not having a BMT but a stem cell transplant (SCT?!) but, for simplicity, I'll stick with BMT.

I will be going into University College Hosital (UCH - see?) on Wednesday 17 November and will let you know what is going on once I get there.

Watch this space...