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.