The Thomas family

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

Wednesday, 29 December 2010

First appointment since the Great Escape

Hi All,

I have been home since last Thursday now and it has been wonderful.  I had a lovely Christmas, with a huge thank you to Dave for cooking almost the entire Christmas dinner single handedly, and the boxing day meal for Pete and Katie too. 

The bedroom decoration is beautiful and a testament to the amount of work put in by the team of builders and decorators who worked so hard to get it done in time for my return.  I've still got my bit to do in terms of returning things to cupboards, but I can only seem to manage one box a day.

I went back to the hospital today to check nothing has gone haywire since I've been fending for myself and I'm pleased to report that everything is OK and the consultant is very happy with my progress. Next appointment is next Tuesday, when the world returns to work so the drive will be a little less easy I suspect.  I am feeling great, with the only giveaway about my situation being a chronic lack of energy (and a chronic lack of hair of course). I managed to walk to the end of the road and back yesterday, and look forward to more such ambulations.

Love to Michelle and Chris who have both gone down with flu in turn. I hope you are both feeling better soon.

Enjoy your New Year celebrations everyone, we're in for a very quiet one ourselves.

Thursday, 23 December 2010

I'm going home for Christmas (isn't that a song?)

A very early blog today before I pack away the computer, or, more importantly, before they change their minds!  Because, once it's in the blog, that's it cast in stone isn't it?!

Yes the day has finally arrived.  So, after:

36 nights;
2 chest Xrays;
1 echo cardiogram;
1 CT scan;
1 liver scan;
3 full blood cultures;
innumerable blood tests;
1 bag of platelets;
4 bags of red blood cells;
countless IV drips;
enough pills to sink a ship;
and, most importantly, a bag of some kind stranger's bone marrow extract

..I am finally on my way home!

I can't thank the staff here enough for the quality of care I have received, they truly are angels!

Thank you all for reading my blog.  I'll continue with occasional updates, probably based around my appointments, so you can see how the next phase is going.  My next appointment is Wednesday 29th December so look in then to see how I've fared without the constant monitoring and care of the staff here.

In the meantime, have a brilliant Christmas everyone!

Wednesday, 22 December 2010

My last night

Well, if all continues to go well, this will be my last night here tonight.  Being sensible, there is every chance I will have to spend a few more nights here on and off over the next few months, if I go down with any infections.  This is to be expected and I am prepared for it, but I will have ended my "long stay" tomorrow.

I seem to have so much to pack up, but will thoroughly enjoy doing that tomorrow morning.  I'll be handed my packet of drugs to take home with me and instructions by the pharmacist on when to take what. Then off for my session with the nebuliser and into the cab home.  I can't wait.

I cannot promise to continue writing up this blog every day, and to be honest it will become a very boring read if I did, but will put in regular updates on my progress and further treatment so please do still look in once in a while.  Check tomorrow so see if I managed to achieve the escape though.  I'll try to remember to let you know before I pack the computer.

Thank you to everyone for their support, prayers, cards, comments and emails.  They have all been so important to me and to helping me through all of this.  I am banned from having many visitors for a while yet but hopefully will be able to thank you in person in the next few months.

God bless you all.

Tuesday, 21 December 2010

Good news!

Well I finally heard the words I've been waiting to hear today.  I've been given my release papers for Thursday, after my time on the nebuliser!  This is still dependant on everything holding up so I won't totally believe it until I walk through my front door, but it is looking very likely indeed.  As you can imagine, I'm over the moon.

I had the promised liver scan and that came out clear.  As there were problems with enough porters, and I didn't fancy another long wait in a corridor, I was allowed to take myself down for the scan and back again.  It was like being let out to play!  Boy, it did show me how little energy I have.  I was even looking for something to sit on in the lift!  It's going to be a long road back to full strength I can tell, which is tough for a gym bunny like me.

My job for tomorrow is to sort out everything in my room.  I seem to have twice as much as I did when I arrived!  Fortunately I will be using a cab to get home so there should be room for everything, as long as I have help getting it down stairs.

I'm particularly excited to get home (apart from for all the obvious reasons), because, due to no small amount of work on Dave and the builders' behalf, the ongoing works on our bedroom should be more or less finished.  The last time I saw it it was close to a building site.

Hi to Clive, a Woodentops friend, who popped in to see me today.

Anyway, off to bed soon and hopefully a good night's sleep.

Best wishes.

Monday, 20 December 2010

Disaster averted

Yes, the telly is back again, although I've now discovered there is nothing worth watching tonight.  No pleasing me is there?

My counts have crept up a little today without the assistance of growth factor so that is good news. Also I am being taken off more and more drugs which I take as a good sign in preparation for the great escape!

There are still some more hoops to jump through including a liver scan, booked for tomorrow I believe.  I sometimes think the transplant team just sit around thinking up more tests but I'll give them the benefit of the doubt and accept that they are naturally very cautious people. Also I need to spend some time being nebulised with a drug whose name I've forgotten, which I will need once a month, and that is booked for Thursday.  This is what I'd call cutting things fine.  I see the consultant tomorrow and will try to get a definite answer off her (I'll be lucky though).

A nice day with the family and Michelle visiting.  Michelle hasn't seen me since I lost my hair and says I have a nice shaped head!  You take all the compliments you can get!

Thanks Joan and Jackie for your comments.  It's a shame that the snow kept the numbers down (if not their appetites) for the service last night and that you had to miss it Jackie, I hope you are feeling better soon.

I'm now off to see if I can find something to watch on TV, just because I can.

Sunday, 19 December 2010

Small disaster

Help!  The TV has lost it's signal which means I can't watch anything!  And I gather I am not alone.  Judging by the silence it is the whole floor if not beyond.  What am I going to do?  It really is the only thing keeping me sane when the visitors are gone and it's not yet bed time.  I hope they get it sorted quickly.  In the meantime I thought I'd do an early post.

And the visitors have gone.  I saw Dave and the girls this afternoon, with the girls briefly popping out to do a bit of shopping.  Thank goodness travel was better than yesterday.

I have very little else to report today.  My counts have dropped again but not into worrying territory yet.  I need my own body to get on with making those new cells reproduce themselves.  I still have a grumbling  temperature, although I don't feel like it, but it is enough to stop me from hoping too much for the evasive Christmas escape.  Let's see what tomorrow brings.

The St John's carols, lessons and mince pie evening is currently under way and hopefully going very well.  I'll sing a quick verse of "Hark, the Herald Angels Sing" in my head in support.

Now back to bashing the remote control in the hope that the high tech approach will sort things out.

God bless you all.

Saturday, 18 December 2010

A day of mixed fortunes

It's been a mixed bag today.  I felt better and more energetic than I have done for ages so went for a stroll around the floor among other things.  No sunshine today though.  And this energy is despite the fact that my counts went down a bit.  Apparently this is no surprise as they stopped giving me growth factor which boosts them so I'm having to do it all on my own now.

Sadly, the sudden blizzards mean that none of my visitors could make it today so it's been pretty quiet.  I used the time to do a few more Christmas cards.  I apologise if I don't send one to everyone I usually do, my Palm died during the year with all my addresses in it and it may take some time to rebuild the list.

As I said, I've been feeling well today which makes it all the more frustrating that I had another temperature spike (ie 38 degrees) prompting the immediate removal of what seems like several pints of blood again (for the third time).  I do hope that it is nothing.

So, in true girly fashion, I'm signing off now to wallow in Bridget Jones Diary which is on the telly now.

Friday, 17 December 2010

A very good day

I've had a good day today for various reasons.  Firstly my counts have gone up so fast that I am nearly normal (on that front anyway) so I'll stop going on about them.  My yellow warning sign has been removed and visitors no longer need to wear aprons.  They should still stay away if they are less than 100% well though as that is another thing altogether - it just means I have the means to start building an immune system, not that I have a fully formed one (I wish).

The consultant was pleased and has started on the process of weaning me off many of the drugs I have been taking.  I will get my Cyclosporin orally from tomorrow, instead of via 3 hours of drip, so a major improvement, and I am stopping or reducing many of the supportive drugs.  I'll be watched carefully to ensure that things like temperature and blood pressure stay under control.

Also, as I am no longer confined to my room, I took a stroll to the lift lobby and basked in the sunshine for about half an hour.  This may not sound like much but my room is north facing and I haven't seen the sun for a month!

As the girls had their last day of term today they were released early so they came to see me early, with Dave following not much later, and we had another companionable afternoon.  We don't have to converse all the time - it is just to nice to have the family around me.  To be honest, I'd be exhausted if I had to keep up a conversation the whole time!

Catherine, sorry to hear about your redundancy (although you did not sound too surprised).  I look forward to seeing more of you, albeit briefly before we both get sucked back into the world of accountancy.

Joan, I do hope the carol concert goes well tomorrow and that the mulled wine gets shared out efficiently!  I am so sorry to miss out this year, one of my favourite Christmas events.

God bless and good night.

Thursday, 16 December 2010

Surreal conversation

My counts are doing really well now, so much so that I may lose my yellow warning sign tomorrow and visitors will not have to wear aprons any more.

Talking of visitors, the seasonal coughs and colds are taking their toll.  Jennifer, the minister at St John's had to call off as she has had a resurgence of her cold, so we had a nice long chat instead on the 'phone.  And my two colleagues Helena and Nicky who came to see me after their Christmas lunch, before returning to Birmingham, both had sniffles or similar.  The nurse would not allow them to come into my room so we had this rather surreal conversation with them standing outside my door wearing masks, talking through the small, semi frosted glass window!  No wonder they said I looked well, they could hardy see me!  Great to see you guys, even if it as only a bit of you!

This does bring home how vulnerable I still am, even with a reasonable neutrophil count, as my immune system has to rebuild itself from scratch.

Anyway, the good news was that I still had enough energy when Dave arrived for us to get some Christmas cards done.

Nothing more to report for today so I'll wish you good night.

Wednesday, 15 December 2010

4 weeks today

I can't believe I've been here for 4 weeks now.   I really do understand what cabin fever is, although I'm not sure the doctors do when they make comments like "Oh that can wait until next week".  Don't they know what happens next week which may be important to me?

Anyway, gripe over, my counts continue to rise and I am now at a level which, if I sustain it, means I am no longer neutropenic!  Great stuff.  Doctors permitting the great escape may still be feasible.

I've had a quiet day, in terms of tests, which is welcome as it's been a bit of a week of them so far.

I had a surprise visit from my friend Eniko which was great, and Dave and Corina came along later.  Corina even carted in a little artificial Christmas tree for me to make my room more festive.

Thank you Anne for you sweet comments.  There is no doubt Dave is my rock, more than ever at times like this.

Good night all.

Tuesday, 14 December 2010

A few more abbreviations for you

I've had a day of abbreviations today.  I had an ECG (electro cardiogram) and a CT scan.  The former was fine, I haven't been told about the CT scan yet.  And I have a new rash (is this the third or the fourth?) which appears to be GVHD - graft versus host disease.  Now GVHD is a strange beast as too much is my donor cells rejecting me, but I need a little to ensure the new cells are killing off the last of my old immune system.  I have to slap on cream three times a day for it.

The CT scan was nice and quick but I then sat in the corridor for an hour and a half waiting for a porter to take me back to my room!  I could have done without that, and with a mask on to protect me from everyone too.

I finally did manage to shave off the vestiges of my hair, several days after I said I would.  It took two attempts as my fully charged shaver ran out of power when it was half way through.  Dave helped with the rest which was handy as I have no idea what is going on at the back. I'm still not posting a picture though.

Finally, I'm pleased to report that my neutrophil count went up again so this latest upward turn seems to be being sustained.

That's all for now folks.

Monday, 13 December 2010

Exciting day

I've had quite an exciting day today as I managed to escape from my room and even the building for a while!  I was booked for a heart echo (standard for the infection they found in my cultures) but they were too full here.  Therefore I was booked into 88 Harley Street which is a cab ride away.  There was lots of hanging around and I am now shattered but it was worth it to get out for a bit and see the Christmas decorations etc.  And the best bit was that I was swept back to UCH in a very swish stretch Audi!

My counts continue to rise which is great and may mean a Christmas escape is still feasible if they continue and nothing else goes wrong.  I've still got my temperature so we need to keep an eye on that.

Anyway, as I said, I'm shattered so I'm signing off now.  Sorry for the short posting.

Sunday, 12 December 2010

Hats away!

I've now started wearing my hats and it is nice to have a warm head again.  I also look a little less scary!  I'll try to get a few pics taken soon to post.  None without hats or scarves though - I have my pride.

My counts went up again so I am allowing myself a small amount of optimism.  I don't want to become obsessed with numbers, or bore you all with them, but they are pretty important at this stage.

I have just finished having a bag of red blood cells, with another due in the morning, as the old haemoglobin has fallen too far now.  This is all normal and shows what a juggling act the whole thing is.

Dave and Corina came to see me and we sat and read the Sunday papers together.  I hear that the Nativity play was very enjoyable.  Well done all who were  involved in it.  My temperature has been a bit high all day and consequently I've been a bit lethargic, although every time I tried to take a nap a nurse or doctor seemed to appear.

You might have got the hint that I'm heading for my bed soon.

Good night and God bless

Saturday, 11 December 2010

Cautiously optimistic

Well I have a few more neutrophils today which is good news but I'm trying not to get too excited until there is a clear upward trend.

The family all came to see me today, slighlty staggered timing as they fitted around the other demands on their time. And the hats have arrived too and not a moment too soon.   I have still got a residual amount of fluff on my head so haven't tried them on yet as I don't want them to be full of hair!  I didn't get around to shavng the vestiges but will do so tomorrow.  It is quite difficult looking in the mirror and not recognising myself.

I've been sent some lovely presents for my birthday.  Thank you so much all of you, you know who you are!

Good luck tomorrow for everyone involved in the St John's nativity play, it sounds very interesting and I am disappointed to be missing it.  I'll be given chapter and verse by Dave when I see him.

I did have some bad news today.  The milkshake machine in the McDonalds at Warren Street is broken!!  It obviously couldn't cope with the extra demands I put on it.  I hope it is sorted soon, I need my daily fix.

Off to bed now, to the usual seranade of sirens which is a continual background to being here.  I won't be able to sleep once I get home as it will be too quiet!

Friday, 10 December 2010

All quiet here

A rather quiet day today so not much to report.  My neutrophils stayed steady at their very low level so I still don't know what is going on with them.  Everything crossed that they start going up again.  I'm still feeling fine, despite my low counts.

It was lovely to see Michelle who arrived, milkshake in hand, which was very welcome as Dave couldn't come to see me today.  She also gave me three beautiful scarves which will be so useful to cover my lack of hair, once I've worked out how to use them.  Thank you Michelle.  There is very little hair left now.  If any remains after my shower tomorrow I may shave off the rest as I'm fed up with having my nose tickled!

Congratulations to Tania for getting a distinction in her Grade V Theory music exam.  Very well done!

That's it for today.  Good night all.

Thursday, 9 December 2010

2 weeks post transplant

And things aren't going quite as well as they were, with my neutrophil count falling for the third day in a row.  They took (even more) blood off me to see if there is a reason for this or just we need to give it more time.  No results as yet.  Fortunately I feel fine apart from getting breathless with next to no exertion.  I knit a couple of rows and need a lie down to recover!

The toughest bit about this is that it prolongs the time before I can get out and about again, even if it is just around the floor. Also it is threatening my aim to be out by Christmas.  Let's hope it is all resolved quickly.

The hair loss continues apace so I've now ordered several hats to keep my head warm and avoid scaring the other residents.  There are some quite nice ones out there once you know where to look.

I want to say thank you to everyone who has been sending emails and comments.  It is lovely to hear from you.  I want to apologise if you don't get a response.  I certainly am reading and enjoying them.  It's just that it is so tiring for me to respond.  Typing this blog is about as much as I can manage some days.  So please bear with me and keep them coming.

I apologise that there is no posting of me in the purple wig - I'm not brave enough yet!

Wednesday, 8 December 2010

Hair today, gone tomorrow

OK, sorry for the pun but I couldn't resist.  My hair is falling out at a terrific rate now and I'd give it 2 more days before it's all gone.  What fun!  I woke up this morning with my pillow looking like a furry creature and, after my shower, a hamster had moved into the drain!

I'm mentally prepared for this but it is still a bit sad.  This is an inevitable part of the treatment and I was never under any misapprehension that I would get away without it.  The falling out bit is not much fun, it's like having a large pet moulting on you lap all the time.  I go to have a mouthful of food only to find hairs have attached themselves to it, and the Kindle is growing a fur coat!  As for my clothes, they are going to give the tumble drier a serious challenge.  I'm less physically prepared so thank you Eniko for sending me links to various head gear websites, I'll be checking them out tomorrow.

I've had a quiet day otherwise.  Sadly my counts have gone down again so I won't be escaping the confines of my room just yet.  Everyone reassures me that this is normal and nothing to worry about.  Let's hope they are heading up again tomorrow though.

One of my neighbours here received their cells today and it's nice to see the buzz that surrounds the event.  The staff all know what a big thing it is and are as pleased for the recipient as they are.

Off to bed now.  I get out of breath with minimal exercise (eg walking across the room) so should sleep pretty well tonight.

Hi to Michelle's Mum Jackie who sent a comment today.  I'm a little shocked at how many people are following this blog.

Good night and God Bless.

Tuesday, 7 December 2010

Happy Birthday to me

For those of you who didn't know, It's my birthday today.  I have to say there are plenty of other places I'd prefer to have been today but I still had a nice day.  Dave arrived at about 8am bearing gifts and almond croissants.  One of the nurses played the birthday card to ensure I had a reflexology session this afternoon from the complimentary therapist.  And Dave and the girls joined me this evening with more presents, cake and, of course, McDonald's milkshake. 
I had hoped that I might be able to escape for a meal out this evening but my counts dropped a bit today and I was back to being confined to barracks.  Maybe later this week if things go well.
A big thank you to Joan Fabb who's fruit loaf was commandeered as my birthday cake.  It was delicious.
My hair showed the first serious signs of disappearing today, spot on cue.  You don’t really believe it will happen until you get that proof.  Good thing the girls gave me a purple Kick Ass wig!
Happy Birthday too to my sister Tina for tomorrow as she heads off to celebrate in Cuba (jealous, moi?)

Monday, 6 December 2010

Continuing to improve

Another day showing things going well with my new cells.  It is very reassuring and I have heard a few mentions of the H word (home)!  Unless I get another infection or some other problems, my aim to be home by Christmas is looking pretty good, and possibly even earlier.  Presumably I'll be able to have some other visitors again in the near future too.

Dave came to see me this evening bearing my now daily Mac Milkshake.  It's strange how something I would normally avoid like the plague has become a bit of a saviour for me.  I still have an appetite but quite reduced, and not assisted I'm afraid by the hospital food!  I mentioned before about Death by Custard, which I have only suffered once so far.  In addition they have designed a new torture - Murder by Strawberry Sauce!  It doesn't matter what type of dessert it is, it always comes with a drizzle of sweet pink slime!  My requests on the menu are beginning to look like something our of When Harry Met Sally - yoghurt instead of cereal, cheese sandwich without salad, no custard, no strawberry slime etc. I am starting to dream of vegetables al dente and simple desserts.  In their defence though, they are quite good at what I call goo - lasagne, stews, pasta bakes etc.

Enough on food, it's time for me to get myself to bed.

Sending healing thoughts to my sister Adrienne who has broken her foot falling over in the icy weather.

Good night all.

Sunday, 5 December 2010

On the up

Great news today, I am showing the first signs of the new cells grafting.  My neutrophil count is above zero for the first time since the transplant.  I'm afraid I misled you the other day when I said this had happened, it was just my general white blood count which had gone up, which was good news but not as significant as this.  As they do not expect engraftment for at least 10 days after transplant, and often much later, this is a very good sign as I am just at the 10th day.

Also, my stomach is behaving much better which is a big relief. Now, just to sort out that tiredness.

I saw Dave and Tania today and slept for much of their visit!  I tried a Burger King milkshake as an alternative to the Mac one today as they had to come from Euston Station rather than the usual Warren Street and you can guess which fast food outlet can be found at each station.  Either does the trick and I happily drink about half a litre of liquid in a short time, which I would really struggle to do if it was water.

I have received so many supportive comments, emails and cards from so many of you.  Thank you, I cannot overstate how much I appreciate them.  I want to make a special mention of the congregation at my Church, St John's, which is particularly in my mind today being a Sunday (and the second Sunday in Advent).  Your support and prayers mean a lot to me and I believe are helping my progress.

God bless and good night.

Oops, I nearly forgot to say, good luck Corina in your clarinet exam tomorrow.  I'll be thinking about you at

Saturday, 4 December 2010


I've just had a rather amusing experience. As it is the weekend I get to see one of the doctors who covers, rather than my regular one, Rob.  Today I was seen by a Dutch lady called Ellen who didn't get around to seeing me until after 9pm.  She then said I needed another chest X-ray to go with all the other tests spurred by my temperature so she took me down pretty well straight away.  It was all over very fast and it is clear I'm pleased to say.

I had to remove my bra for the X-ray, as it is underwired, so I did it the girly way without removing my T shirt. I didn't bother putting it back on again to come back up and had it on my lap.  Ellen confessed that she is so puritanical that I had to hide it up my front!!!  We then spent the return journey discussing whether it is strange to hide your underwear on the washing line!

Apart from that it has been a pretty quiet day.  I was visited by Dave, Corina and Michelle although, being pretty tired, I wasn't exactly sparkling company.  I've also been given one bag of platelets followed by one bag of red blood cells with another due tomorrow morning.

Hopefully that's it for the day and I can get myself to bed pretty soon.

PS I've finally worked out how to set the correct time zone so my postings are actually showing the right time at last!

Friday, 3 December 2010

Visitors at last!

The family managed to get to see me today at last so we had a lovely day doing our own thing.  And I can vouch for the magical powers of a MacDonalds milkshake.  It definitely was more appetising than water.

I think the staff here have been making bets on when my temperature would finally spike.  I got close last night but then settled back down.  But, as I was writing this, my temperature was taken again and I have reached that magical 38 degrees!  This instantly lead to them taking loads of bloods off me to test for cultures.  See the photo of the paraphernalia, if only those bottles contained wine rather than being filled with my blood!  I also qualify for antibiotics - they really don't take any chances.

Well, now I'm set up with my antibiotic drip for half an hour, and of course my temperature has gone down again!  However, this is so normal that they would have been more worried if I hadn't had the temperature.

I think I'll sign off before anything else interrupts my writing.  Have a good weekend all.

Thursday, 2 December 2010

One week post transplant..

...and still doing well.  We count things in days at this point.

The platelets and growth factor yesterday have both shown good results.  I am no longer at the zero neutrophil count (although barely off the floor).

Dave and the girls haven't been able to visit for a couple of days because of the snow.  Fingers crossed for tomorrow.  I have had clearance for any visitors to arrive carrying a MacDonalds choc milkshake!  They are so desperate to encourage me to drink enough that that got the thumbs up!  Whether I actually fancy one when I get one is yet to be seen.  I'm struggling with drinking anything even vaguely acidic.

Thanks for the postings which you have been able to do, it's great to hear news of the world out there.  If you have tried and given up, you can always email me on

I'm pretty tired this evening so will sign off now and catch some kip.

See you tomorrow.

Wednesday, 1 December 2010

End of week 2

Yep, I've been here for two whole weeks now.  I'm still feeling pretty good, despite the feeling of having a washing machine for a stomach.

It's been quite a busy day in some ways as I have been on the drip for a total of 8 hours.  I suppose it's not as if I had anything else to do!  As well as the cyclosporine I needed 2 bags of potassium and one bag of platelets to make up for the undesirable losses that are inevitable.  I also had an injection of growth factor to stimulate the growth of my new white blood cells.  This is good news.

I hope that all of you who were off school or work today because of the snow had a nice relaxing time, even if you still had to do some work.  I am jealous of the fun side of the snow, I quite fancy making a snow man.

I forgot to mention I was visited by one of the Harley Street psychologist's yesterday.  It's all part of the service, although not as much fun as the complimentary therapists.  I managed to keep her off the "and how does that make you feel?" type questions and chatted about the girls, the Kindle (it's causing quite a lot of curiosity) and lots of other subjects.  It's good that the service is offered but I don't feel in need of it at the moment.

I hear the sound of an apron being donned outside my door so I'm about to be visited for another set of Obs (observations) or meds so I'll sign off now.

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...