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Michelle Lane
Corporate Fundraising Manager

The Anthony Nolan Trust - Taking back lives from leukaemia

Tens of thousands of men, women and children are diagnosed with leukaemia each year in the UK, many will die if they do not find a suitable bone marrow donor. The Anthony Nolan Trust saves hundreds of these lives through providing volunteer donors from our register.

The Anthony Nolan Trust
2-3 Heathgate
Agincourt Road
Belsize Park
London NW3 2NU

Tel: 020 7284 8285
Fax: 020 7284 8202
michelle.lane@anthonynolan.org.uk
www.anthonynolan.org.uk

Long time no post

Oops - it's been four days since I posted, which at first I put down to not having anything to say, but then I remembered my trip to the hospital on Friday...

It was a long day (my Dad and I left at about 8am and got back at about 7:30pm), but a pleasant one. I had to go in for kidney and blood tests, which happened at some point in the morning, and showed that my haemoglobin was a bit low. I wasn't surprised, as I'd been very lethargic last week, so it was good to get the boost of a blood transfusion that afternoon. Otherwise I think the tests were fine.

I also introduced my father to the delights of Peabody's, purveyors of the best coffee in St George's (and decent panini too), and discovered that it's also the place to be, as I bumped into several people I knew (one former RMU SHO, one OMV doctor, one RMU nurse). Hurrah! I also met some lovely new people in the Daycare unit, which is a far more sociable place than the ward.

The trip also gave me a chance to clear up exactly what's going on now, which I made the most of by having an incredibly confusing conversation with my consultant and registrar... I think I got there eventually, and currently this is how it stands:

• On Tuesday I'm going to the Royal Marsden, Sutton to meet a consultant and discuss when I'll be going to them (for radiotherapy as part of the autograft, though I'm not sure how long I'll be there).
• I will be seeing the transplant consultant at St George's either on 13th March, or possibly sooner if he has a spare moment. We'll discuss dates etc for the stem cell harvest and autograft.
  
• Only then will I have my final dose of methotrexate and asparaginase.
• At the optimum moment (maybe 10 days / a couple of weeks) I'll have my stem cells harvested.
• Some time after that (a month or two??) I'll have my autograft.

That's as much as I know at the moment, and as you see there's quite a lot, particularly regarding dates, still up in the air. There are a few thinsg I really would like to be out of hospital for, namely Tomandalice's wedding (1st April), the Easter Retreat at Downside (13th-16th April) and my graduation (6th May), but we'll have to see...

Since (and before) Friday I haven't been up to much. Resting and relaxing as ever... I'll update more often again, though my subject matter could end up being anything when I'm not actually having treatment. I'll try to think of a joke for next time.

It's hardly surprisin'

For those who wonder about my wellbeing (rather than those freeloaders who like pictures of slapheads and hairdressers), my discomforts during this home visit have been:

1. Mucositis - This isn't much fun: a really sore mouth and lower lip. It's not quite ulcers, but very painful to touch, making the consumption of hot drinks and acidic food, the brushing of my teeth, and sometimes even speech (among other things) a bit of a chore. It's a common side-effect of methotrexate, and I think it's starting to clear up a bit, but even bacon sandwiches don't quite have the same zing at the moment. Well, they still have a bit of a zing, which is the problem.
2. Occasional ickiness - Sounds about par for the course.
3. Fatigue - Some might point out that much of my time at home is always spent asleep, but this time it's not sheer lethargy. My haemoglobin was quite low when I came out of hospital, so it's probably due to the consequent anaemia.

On other business, I'm being referred to the Royal Marsden at Sutton for my autograft, which was news to me until a secretary from there rang me up to ask when I wanted an appointment. "For what?" pondered I. Anyway, I'm not sure quite whether I'll be there for the whole thing, or just the main event, but I'll let you know when I do.

On a more serious note:

A mouse lived in a windmill in old Amsterdam
A windmill with a mouse in and he wasn't grousin'
He sang every morning, "How lucky I am,
Living in a windmill in old Amsterdam!"

Chorus:
I saw a mouse!
Where?
There on the stair!
Where on the stair?
Right there!
A little mouse with clogs on
Well I declare!
Going clip-clippety-clop on the stair
Oh yeah

This mouse he got lonesome, he took him a wife
A windmill with mice in, it's hardly surprisin'
She sang every morning, "How lucky I am,
Living in a windmill in old Amsterdam!"

Chorus

First they had triplets and then they had quins
A windmill with quins in, and triplets and twins in
They sang every morning, "How lucky we are
Living in a windmill in Amsterdam, ya!"

Chorus

The daughters got married and so did the sons
The windmill had christ'nin's when no one was list'nin'
They all sang in chorus, "How lucky we am
Living in a windmill in old Amsterdam!"

Chorus

A mouse lived in a windmill, so snug and so nice
There's nobody there now but a whole lot of mice.

They've put me in a home...

My home! Hurrah! Am home again, which is lovely, especially since this is for a just over a week - the longest I'll have been out of hospital since I went in at the end of October. I do have to pop back on Friday as a day-patient for a kidney test, and I've been given a petrol tank to wee in for the 24 hours before...

Anyway, I'll post more tomorrow: for now I need to head off to bed to make the most of a nice long sleep...

Night night

SLAP!

First things first: the asparaginase yesterday was, as expected, painful, though it wasn't quite as bad as last week. That may have been because I was dreading it so much, or may have been due to an alternative technique by the staff nurse. Anyway, it's done, which is the most important thing, so only one more of those to go, and that's in just under two weeks' time.

Excitingly, I'm feeling the cool air over my head somewhat more today, after I finally gave in to myself (there was much Gollumesque thinking to be done first) and had my head shaved... It's very exciting, and I reckon it's much better than it was, as it was getting pretty thin and pathetic. This is what I look like:

Pretty cool, in my humble opinion.

Here's me looking a little scarier and more like a cancer patient:

And these were my hairdressers:

Meanwhile, I'm not sleeping much, due to being given folinic acid and saline throughout the night still, but it's good to get the second dose over with. Hopefully I'll be allowed home on, say, Monday, for just over a week, as there's a longer gap until the third and final dose.

It's a bit chillier with no hair...

Aspaaaaaagggggghhhhhhraginase

I had a lovely 24 hours at home, involving just one and a half bacon sandwiches and a delicious toad in the hole, as well as a good proper sleep and a proper amount of singing loudly at the piano. My pater had to drive a fair bit - what with picking me up and bringing me back - which was very kind of him and gave him a chance to make sure his new car worked properly, which I think it did.

Back in the 'ospital it was swiftly back into routine, though I enjoyed my last few hours of not having to measure my urine. The next batch kicked off at 4am this morning, and I have just 13 hours left of my methrotrexate drip! I had plenty of guests to keep me busy and ensure I didn't have to get out of bed (if there are guests, I feel guilty taking up a chair; if there aren't, I feel guilty staying in bed all day). Have been stretching my legs a bit now and met another couple of patients on the ward! That's always exciting, due to its rarity, though I didn't get to talk much to them.

Tomorrow the meths will finish, and asparaginase will once again take me to a whole new world of pain. So think of me tomorrow and appreciate how comfortable it is to sit on your bottom and not to have anything injected in it. Ug.

On a prettier note, I might take photo of my fingernails to post on here soon. Hurrah!

Happy Valentine's Day

PS What's the record for Valentine's cards received? I only wonder... ;-)

Popping home...

...for just 24 hours. Need to be back in hospital by 4pm Tuesday, but at least this way the paterfamilias gets to use his new car!

It'll be good to get out, albeit for such a short time.

To sleep, to dream... Ay, there's the rub

It's a strange but, I suppose, understandable contradiction that you go to hospital to recover from illness, and they stop you from getting a decent night's sleep, which would surely help... Since I've been having folinic acid (to reduce the side effects of the high-dose methotrexate), I've had to be woken up at 1, 4 and 7 in the morning for those doses (and the timing's very important). I've also been almost constantly on IV hydration, so often a bag runs out during the night, the pump starts beeping and it needs to be replaced. And of course observations still happen at 2am and 6am, though fortunately the nurses have mostly tried to combine them with the folinic acid (because the exact timing of obs isn't so important). Still, I've very seldom even had a couple of hours of unbroken sleep, and usually when I've been awoken for the next drugs/fluids I've immediately felt awake enough to be fairly certain I hadn't been in a very deep sleep. Usually some kind of light needs to be turned on - though again the nurses are generally very good at trying to keep light, noise and other disturbances to a minimum - so it does take me a while to get back to sleep. Having a bag of fluid pumped into your chest all night doesn't really help with sleeping, either, particularly as it makes you need the loo more often, so all in all it's tricky to get much sleep 'round these parts.

Luckily I've been allowed to lie in this weekend, so the best sleeping time has perhaps been in the morning when I should probably have been having my breakfast. Mmmmmm, Vegemite. I've occasionally dropped off during the day, though I'm a bit wary of sleeping too much in the day because then it's even harder to sleep at night. I've always been a big fan of sleeping, and one of the many lovely things about going home the two times I've done so was being able to get an uninterrupted night's sleep. Unfortunately the folinic acid is necessary, the hydration's necessary, and it's important to keep my observations going so that if I spike a temperature they can do something about it as soon as possible.

ZZZZzzzzzzzzzz

Um matter

I just remembered today that apparently when I was little I used to say "um matter" (meaning "no matter"/"don't worry") a lot. I might take it up again, as it's a great phase and the kind of thing I often think.

That randomised choice

Oops! Just realised there was some text missing in my last post. In case you were wondering, the randomiser waved its magic wand and came up with...

...the allogenic transplant.

This morning I confirmed with my consultant that I'm happy with that option. I think it's the option I wanted to go for anyway, but felt I should choose the continuing chemo option, as there isn't such a risk. Actively choosing to go for the autograft (as I'll now refer to it as, since it's snappier) would have meant directly choosing the riskier option, whereas this time I'm just going along with the trial. The flaw, of course, is that it is still my choice, because I could have rejected the randomised selection, but it's more of a passive choice, accepting the computer's decision rather than making it myself. Wimp!

If it had come up with continuing chemo I would probably have accepted that, too, but my acceptance would have had more of a resigned air to it. This leukaemia has taught me to make the most of everything, so hopefully this quicker option will let me get back to full strength and my wild lifestyle pronto.

Apologies for keeping you waiting... partly it was because I wanted to confirm with Dr Al-Jehani that I was happy to accept that option before telling everyone that that was what I was doing. Mostly it was just to be annoying, though.

Computers, eh

Back in the olden days, you might remember, I would either be in hospital or my computer would be able to connect to the internet. In hospital, no internet. Out of hospital, internet. Now, due to the power of modern magic, I'm on the internet AND in hospital! Oh yes! Both at the same time! I know you don't believe me. But it's true. In hospital, internet. Internet in hospital. Online IN MY VERY hospital room.

In other exciting technological news, I decided a computer should make my choice for the anti-relapse phase (knowing I could still change my mind, and thinking that having a choice thrust upon me might make me realise what I most wanted) and therefore have had the choice randomised...

...and it came up with...




*some text missing*

And the Wichita line man is still on the line

Yesterday I felt like a walking advert for lines. I had my PICC line in my left arm, a cannular in my right, and a Hickman in my chest. This was a bit greedy as most people make do with one. However, I needed to have IV hydration at the same time as the chemo so I needed an extra line and thus the cannular was put in (fourth time lucky). The cannular however is only temporary and so they put in a Hickman which has not one but two tubes. Eventually they took the cannular out but until then I was pretty tubed up.

The methotrexate was given in such a high dose that it had to run over 23 hours! Golly gosh. The IV hydration was needed to keep my kidneys flushed, I think, while they have also been testing the pH of my urine to make sure that it is alkaline. It can also give me mucusitis or something like that so I have to be careful to keep my mouth clean. It finished today at about ten o'clock and so far I've been feeling okay on it.

Today also saw the joyful return of everyone's favourite intra-muscular injection, Asparaginase. What's more, this time it's double the dose. I was wondering whether that would mean it would hurt twice as much or for twice as long, but having had the injection I think that the answer is 'both'. So I hobbled up and down the corridor to try to diffuse it and now I only have two lots left. Yikes.

Earwig go again

Just about to leave for hospital (only an hour after we planned to go - oops) - will be in there at least for a week to begin with, though it could be three or four. I'm just not quite sure. Do give me a bell if you're going to visit: my father will post my new landline number (as I'll almost certainly be in a different room) as soon as he gets a chance. Oh, and please try to read this blog before ringing me if possible, as I do change rooms sometimes and some other poor patient has to put up with my phone calls for a while - I will let the blog know if I do move numbers...

Had long chats and thinkings last night and still not much clearer as to what I'll go for for Phase 3. I'll try to get updates to the blog as much as possible, though it depends on how awake I am this time around and who comes to visit me and when!

Fingers crossed for the bone marrow test result...

Stuff and stuff

I'm heading back into hospital tomorrow (they do have a bed for me, apparently) and will once again try to reduce how much I take in, so I shall be leaving a number of borrowed books, DVDs and videos chez moi here in Southbourne... I'm very slowly working my way through them (through the books slightly more quickly than the DVDs, to my surprise), but there's no point me taking a hundred films up if I'm only going to watch a few, and even then can get others brought up as and when I need more.

If I were more bored, or perhaps more dedicated to useless pursuits, I'd work out whether I could mathematically have managed to watch all the DVDs I have in my current possession during the time I've so far spent in hospital. I reckon not.

The first drawback of not taking them all up is that if anybody wants their films etc back at any point, they could well be down here in Sussex. But if you're likely to want them back any time soon, shout at me a decent time before you visit and I'll try to make sure they're in Tooting. Preferably in my room, though if I get a decent offer at the market... Secondly, I have to decide now what I might want to watch and read over the next however long I'm in hospital. Oh, decisions!

I've still not come to a conclusion on the Phase 3 question. But I did go for a walk along the beach. And I made it to Mass in Chichester this morning and was rewarded with coffee (and delicious toasted brioche) at the lovely Davenports, who are just lovely and full of loveliness and always a pleasure to see. Robyn was here, too, but has returned to Oxford having fed me, Tom and Alice in epic and delicious proportions last night: it was great to get her down here.

In other news, it's looking like a very enjoyable Six Nations... particularly if you're English.

I was chatting to James Brown the other day

I don't think I've mentioned yet that since coming home I've been feeling better than I have for ages. It's lovely, though I realise it doesn't make me clear or change the fact that I'll be going in again soon and still have a fair bit to get through. The last month or so was tough, so any improvement would have felt brilliant after that, but I'm on much better form than last time I was home too (when my blood counts were much lower and I'd finished chemo only a couple of days before). I'm enjoying it while it lasts, though it's sooooo cold I've decided it would need a million clothes to keep me warm outside and haven't managed to find that many, so haven't been for a walk.

The keen-eyed will have noticed in the pictures below that my moonface has gone, which is a relief. My hair's pretty thin, too, though I still haven't had it all off yet. Oh, and I'm eating again, though my appetite isn't very big.

Où sont les neiges d'antan?

"Hallo, Eeyore," said Christopher Robin, as he opened the door and came out. "How are you?"
"It's snowing still," said Eeyore gloomily.
"So it is."
"And freezing."
"Is it?"
"Yes," said Eeyore. "However," he said, brightening up a little, "we haven't had an earthquake lately."

'Pooh Builds a House', from The House at Pooh Corner (A A Milne)

Dilemma

I think it's called continuing or maintenance therapy, what I've been referring to generally as Phase 3, or perhaps that's just the further chemo option. Hopefully (fingers etc crossed) this most recent bone marrow test will show I'm in remission, and after this intensification therapy and I think another bit (CNS, I think it's called, though I've no idea why), I'll go on to the treatment that will try to reduce the chances of relapse. In other words, Phase 3.

The transplant consultant does not believe my case justifies the risks (which are quite high) involved in a bone marrow transplant (BMT) from an unrelated donor at this stage, so my consultant has ruled that out. I think that's because I'm not at especially high risk of relapse, though the percentage of ALL patients who do relapse is already pretty high. Also, this way I will still have the unrelated donor BMT as an option if whatever I do go for doesn't work.

The choice, therefore, is between:

...an autologous transplant (officially called something like 'high-dose chemotherapy with stem cell rescue' or something like that), which is like the BMT but using my stem cells rather than someone else's bone marrow or stem cells. This reduces the risks involved in the BMT, as I wouldn't reject my own cells, and my bone marrow would start to regenerate more quickly so I would be at risk of infection for a shorter time. There is still, however, a 5-10% risk of death, which I believe comes from the fact that after the high-dose chemo infections could easily prove fatal until I recover. This course would see me in hospital for around 4-5 weeks, probably, and then I'd be done! The consultant reckons on about 3-6 months after that before I'd be back to full strength and normal life...

and

...further chemotherapy, which would take about two years, the first 25 weeks (or something like that) seeing me popping back into hospital for a week or so at a time fairly regularly, and then the rest of the time having me back in for 2 weeks every 3 months. By the looks of it, this chemo would mostly be intravenous and oral (ie tablets), and of course would be less intensive than what I've been having so far, and I would slowly be able to get back to an active life during the treatment.

The other option is to pass on responsibility for the choice to a computer: as I'm signed up for the UKALL XII trial the normal procedure would be for the choice to be randomised, as they have no scientific reason to believe one option is better than the other, and they want to find out whether one is or not. If I have good reason to choose one over the other (ie I'd prefer to take the risk and get it over with more quickly; or would prefer the less risky option; or if one means I can go to Tomandalice's wedding and the other doesn't), I can drop out of the trial and go the way I want to. But will I always fear I made the wrong choice? Then again, if I leave the responsibility to the computer, I'll still be able to wonder whether I should have made the choice myself and gone for the other option.

Whereas my choices so far have been easy, such as this one:

Doc: You have ALL.
Me: Oh.
Doc: We can treat it though.
Me: Hurrah!
Doc: If we don't treat it it'll be fatal very soon.
Me: Ouch...
Doc: So, do you give your consent for us to treat you?
Me: Well, that sounds like a good idea. Would you like a biscuit?

this choice is a bit more complicated, involving as it does the possibility that I will be condemning myself... It's very tempting to leap at the autologous option because two years of chemo sounds daunting whereas being out and about within a few months would be wonderful, but then if I were to fall into the 5-10% I would feel that I was in part responsible for my downfall. If I were to choose the chemo because of the lower risk, will I be feeling fed up and frustrated in a year and half, knowing that I could have finished a year previously and had a lovely treatment-free 12 months instead of still plodding in for the next dose every so often? If I relapse will I always have that nagging feeling that I should have gone for the other option? If I randomise and things go wrong will I curse myself for not having taken responsibility myself?

Oh, it's tough. Unlike most times that I'm being indecisive and agonising over a choice I have to make, this time it's a serious choice with potentially big consequences. In my more sensible moments I realise that in many ways there's no 'right' or 'wrong' choice, because both options might or might not work, and even if if whatever I choose doesn't work out it doesn't necessarily mean I made the wrong choice, but that's easier to say than believe. And I do need to decide whether I'd be happy to take a risk so as to try to improve my quality of life as soon as possible. Gah.

Brain melting...

Look!

It's me in a hat! And Jo in a hat! This was taken about a week before Christmas.

Other photos from the day can be found on this page.

That was the day lots of OMV friends visited after having been to the Christmas Reunion - they were consequently very tired and amusing (and easily amused) - and was enormous fun. Adam and Katie, though, had been ice-skating, and therefore turned up with those two hats. I'm not sure I entirely follow the logic of that sentence, but anyway.




This one, on the other hand, once again with me behatted, but this time accompanied by Katie, Super-Rachael and Fred, was taken just last Sunday (three days ago)! As my neutrophils were up and I was just waiting to finish my antibiotics and have my bone marrow test before coming home, I was allowed out of my room, and that day went for a pretty long wander around the hospital... I had a stethoscope around my neck for much of it (as you can see in one of the other photos), which really confused other patients, visitors and the doctors and nurses. Is it a patient? Or a doctor? Or some strange new hybrid?

Once again Adam is responsible for the photos, and there are more from that day here, where you might also notice some proof that many of my friends would make lovely nuns. Except perhaps Adam. And Giles.

Email overload

One does stockpile rather a number of emails when one is offline (as I believe young folk call it) for a month or two, so for quite some time I have been digging through them all, unsubscribing from emails sent by all those travel companies and CD shops who are so eager to let me know their latest discounts, all those Oxford societies who are yet to grasp the fact that I am no longer there, all those terribly amusing websites that want me to know their latest masterpiece is ready to be admired, and so much more. It's taking a while (I'm also passing on OMV emails to somebody in a better position to reply, and making sure I manage to read the truly interesting messages), but I'm hoping it'll be very satisfying to put an end to all the rubbish I was once eager to make the most of, but now never even glance at...