Thursday to St George's; funny FA Cup Final

Right, I'm heading back to Tooting tomorrow morning to get cracking with the next batch of chemo, as there is now a bed available for me. I could have gone this afternoon after all, but given that I'll start the chemo at the same time either way, I decided an extra night at home sounded too tempting, particularly as that's what I had now been expecting! I do feel more ready to go back now, and will have to work out what will keep me best amused for the next week. My big question is whether they've got the internet going again yet... I really do hope so. Otherwise I'll be blogging from my mobile, I expect!

It was good to watch the football last night, and reminded me that while in ITU I managed to watch the FA Cup Final, or at least bits of it. It was a funny experience, though - being very tired and with my body and mind not working very well, I saw the game in a very different way to how I usually see it... It looked like an 8-a-side game, and seemed to be being played incredibly slowly. I was telling myself it was possibly the worst game of football I'd ever seen, so I was then surprised to hear the commentators say that it was the best Cup Final in recent history. The footballers looked awful: everything was so laboured and the pitch was too small. I also dropped off a couple of times when key goals went in. I think. It was a surreal experience. I also remember getting more and more frustrated, because I wanted to watch the whole match and see the end result, but I was tired and confused and wanted it to finish sooner rather than later. So extra time and penalties weren't what I was hoping for... For the same reason (but just because I was very tired), when watching the Champions League final back in RMU, I was happy Barcelona's second goal went in, despite the fact that I wanted Arsenal to win. I wanted to get to sleep and extra time would have stopped that!

This amused me:

Not back in tomorrow

Last night I slept better than I have for a very long time... I must have dropped off some time not too far away from midnight, and didn't wake up once before 7:15am! What's more, when I woke up, it was a proper groggy wake-up, as though I'd been in a deep sleep, unlike every other time recently, when I've felt completely awake immediately. Bliss!

And I've been on the prowl: to Emsworth, no less, with Robyn, where we pottered down to the sea, then back into the town centre, around the bookshop and then into a cafe for a nice cup of coffee. In addition to that, I've been steaming around the house, and managed to walk down the stairs with one foot per stair and not using the banister for support, which is a massive improvement. I surprised Sue but bounding to the door to let her in this evening, making her a cup of tea and generally running the house!

So, all in all I'm feeling much better today, and so it seemed a shame to be going back to hospital tomorrow. However, there are no beds, so I'M NOT GOING BACK TOMORROW - forgive the bold and capitals but the last thing I want is for anyone to turn up in Tooting tomorrow to see me. Anyway, it's quite nice, now my body is noticeably stronger and more functional, that I will getting at least another day at home. I'll ring again tomorrow to find out whether there's a bed for me on Thursday; and so on. Unfortunately, each day later probably makes it less likely I'd be able to go to Grandma's funeral, but we'll just have to see how it works out.

Fi has asked me to put a link up to one of her favourite charities, and it's another wonderful site where you can help just by clicking! So don't hang around: go and click at The Breast Cancer Site, and make sure you bookmark it so you can do so again tomorrow, and the next day, and every day. I'll also pop a link down there on the right, in case you lose it.

Right: I'd better start putting my facepaint on before the England friendly this evening...

Sally; ITU special foods; bath

Sally

Now you've met Sally, I can tell you about her highly-rated medical opinion... When I was first in ITU, it was a real struggle to speak, what with the mask, my massive breathing rate, having a feeding tube down my throat etc. Naturally I kept my words to a minimum, as I had to really shout to even begin to be understood. My darling father, meanwhile, has been known on occasion to struggle with his hearing. So we made a right pair trying to communicate! Now, you may remember that the transplant consultant was Doctor Dalley, and he was still looking after me when I went down to ITU. After one visit from him, when he had told me I was doing ok, I was keen to tell my dad.

"Dalley says I'm doing ok," I bellowed through my mask.
"Sally says you're doing ok? Aaah," giggled my Dad, humouring me.
"Dalley says I'm doing ok," I tried again.
"Sally says you're going to be ok? Good," replied my Dad, nodding his head.
"DALLEY says I'm doing ok," I reiterated, shaking my head.
"Sally say's you're doing ok..."
"D-D-D-D-D-D-D-D-D-DALLEY!"
"Sally?"
etc...

Eventually we got there, but boy was that frustrating for both of us! I wanted to patiently explain that, though Sally's medical opinion was no doubt highly regarded in some sections of the hospital, I didn't feel it desperately interesting to tell my father about it, particularly as I wasn't very delusional at this point; and actually, it was a little more consoling to know that my consultant thought things were going ok... Moral of the story? Don't give toys/dolls/teddy bears names that sound like doctors.


Eat! Drink!

I've been remembering some of the food and drink I was attacking when down in ITU... My basic nutritional needs were all fulfilled by the 'feed' being put straight into my stomach through the tube. But I was encouraged to try to eat more, and I was often thirsty from the mask. What's more, food and drink were a good positive to look forward to.

I had an excellent supply of Coke, which compared to the water seemed absolute heaven. I'd had that craving since before my trip to ITU, when I went out with siblings etc to Ferrari's, and found an ice-cold glass of Coke the most refreshing thing in the world. Hospital water is seldom very cold and refreshing: a can of Coke from the fridge was what was needed. I also discovered chocolate Fortisip milkshakes - which to my surprise were very tasty as well as nutritious - and ended up with a crate of them delivered to the RMU when I got there!

The biggest feature of my diet, though, ended up being ice lollies and ice-creams... Never underestimate the power of an ice lolly to cheer you up! When I moved into ITU, the weather was lovely (I even had the window open, which isn't even possible on RMU) and my family did a brilliant job of keeping me supplied with Calippos, Soleros, Starburst ice-creams, maybe a Galaxy in there. I never knew I liked them all so much... One massive frustration was an ice lolly / drink type thing that was so frozen I had to wait for it to melt enough to get it out... Those minutes went particularly slowly!


Bath

I think I should expand a little on my 'Heaven is a bath' comment last night. I've always loved baths, though in recent years have not managed to make much time for them. During my treatment I've generally avoided them (at home, this is; no baths in the RMU anyway), as I've either had a PICC line or Hickman line. which have to be kept out of the water, and therefore decided it would be more effort than it would be worth. Last night, though, with my muscles (what there is of them) aching and my legs really threatening to give me some jip, I decided to give it a go... My Hickman is actually higher on my chest than I realised, and I taped the ends up on my shoulder where there was no risk of falling in the water.

And the feeling, when I sank into the hot water, was heartstopping. Any soreness was lost, and I knew there was nowhere in the world I would have preferred to be at that moment. It felt so good I was tempted to post immediately, from the bath, using my phone, but decided to just enjoy the moment. The bliss didn't actually last that long, as my legs soon decided they didn't want a long soak and I was finding the whole thing a bit too hot, but while it did it was wonderful. I think I'll be the trying the same again tonight, though I'll remember to leave a window open, and I'll be a bit more prepared for the difficulty of getting out of the bath with pathetic legs feeling particularly weary after a nice relax.

Pic spam!

I've just gone through my digital camera and only now downloaded lots of photos from over the past year. Naturally many of them are completely irrelevant to now, and certainly to having leukaemia, but it was lovely to see them so I thought I'd share a few!

This one is from the White Knights Ball: if you remember, I couldn't quite make it but my siblings more than made up for the absence...











Also from the WKB, Duncan gets a warning from Tom...














This one is filched from Adam's site, and shows a cosy supper scene at the Easter Retreat.



This goes all the way back to my 23rd birthday in Oxford shortly before abandoning the dreaming spires...


This is proof that the boat was launched yesterday! I did take a couple of photos with me in but I looked like an old Russian woman.


This just makes me laugh too much, from the wedding (thank you Lucy): Freddie and I can occasionally be quite charming, but God knows where we found the other two.









A lovely family pose outside the church.









John and Robyn at the end of his triathlon.








Sally, my new girlfriend... On my first or second day in ITU, Gobby appeared with Sally, explaining that I needed a girlfriend. She was a great comfort, though we're a bit worried she might be fluid overloaded, as her feet are a bit swollen!

Heaven is a bath

It's official.

Downs and ups

Looking at yesterday's post now, it seems a lot more positive than I remember the day being, to be honest... That may be due to the fact that I felt worse as the day continued: I was actually so shattered by my failure to sleep that by the evening that there was no way I was going to be able to type anything coherent. My father says he's never seen me so completely worn and quiet, and I have a new respect for the word 'utter': my body and mind were utterly exhausted and I had nothing in the tank. I don't even think my emotions were able to consider the situation: even they were empty. Zonk!

Fortunately, last night I slept much better. No doubt the extreme exhaustion helped, though as usual falling asleep was followed fairly quickly by waking up again... Somehow something clicked, though, and all in all I had a good sleep. For some reason I need to go to the loo a lot during the night at the moment, but I think the exercise it gives my legs is probably quite useful, and whenever I went last night I swiftly dropped off again when back in bed. Lying on my side and keeping a pillow between my legs seemed to make a difference, too, which is a useful trick to know now! It was a real relief to wake up this morning having slept - I really would have been in trouble if I'd felt today like I did yesterday.

So today I'm feeling a huge amount better than I did yesterday, and have been able to have much more 'normal' day. My father was planning to go to West Wittering to help Sue put her boat in the water, and wondered whether I might want to come along as well for the change of scenery. When he suggested this yesterday, it really didn't appeal, but yesterday doing anything at all, particularly if it involved any energy or movement, was distinctly unappealing. With the sun out and feeling more sleep-refreshed this morning, the idea was vastly more interesting! So we piled into the pickup, and I had a lovely time in the sunshine at West Wittering, reading the newspaper and enjoying the scene while they put the boat in. It was delightful. There were lots of families going out sailing, or just wandering, and they were all so happy! The sun was shining and these people were making the most of being alive: I'm all for that... I managed a little walk, which was pleasing, and have been trotting around more than on any previous days. My legs are very tired, but it's worth it. Getting out of the house has been a big boost, particularly as it was such lovely weather: I'm very very glad I did!

So, here's to sunshine and fresh air!

Bacon: I'm just following instructions!

Remarkably, it was only this morning that I had my first bacon sandwich: all my other meals have been lovely and home-cooked and now I'm off steroids I'm not pining after extra food in between... Having not got much shut-eye again last night (though I did feel my body was getting well rested, even if I couldn't quite drop off), I was pretty hungry when I decided to give up on the sleeping idea, and sought out the bacon and eggs. Now, you all know how much I love my bacon, but I would like to point out that it was actually Samar who was most insistent that I stuff myself with fry-ups and similarly fatty foods! I think the theory is to build up my strength, but to be honest I'm not the kind of person to waste too much time asking why I should be eating lots of bacon. Forget fish and salads: get stuck into the bacon. Good advice! For the record, my bacon and egg sandwich was delicious. But you knew that.

It was a bit strange feeling mostly ok last night but not being able to nod off - I was mostly too tired to read etc, so spent most of the night enjoying the peace. I'm shattered today, but I think I managed to get some good sleep on the sofa earlier and will no doubt drop off again at some point. It's frustrating not being able to concentrate as well as I'd like, but I'm in no rush to get anything done so it's a good test of my patience.

I've been trying to get myself up and wander about as much as possible, which is helping strengthen my legs, but is exhausting. I'll probably go for a walk down the road later, to get some more serious exercise (and fresh air), but doubt I'll risk going unaccompanied, as my balance isn't entirely there and it's not like walking around a hospital... In case you were wondering, I wasn't joking the other day when I said the physios were going to take me to the gym: they have a little place where patients like me can slowly build up their strength and were planning to take me there, but then of course I left hospital instead.

It's a bit grey outside, which is gloomy but at least prevents me from being annoyed at being mostly stuck inside... Hopefully the bank holiday weekend will brighten up shortly. Is anyone up to anything fun?

Gore!

Taken on Wednesday (I think) while I was in hospital, here are a nice couple of bruises that have been taking their time to recover!

I'm not sure how I got this whopper on my inside arm. It is fading at last.












I think this was from the morning everything went wrong, and I collapsed in the bathroom. Gobby saw it at the time and pointed it out. It's still there! For the record, it's on the left side of my body.








The photos were both taken by me with my new phone: hence the shaky quality! There are various other bruisey bits on my arms and chest, so I do look as though I've been in the wars... My Hickman has a peach, for example, from where the old one was taken out and where the new one has been put in.

Feeling human...

Good afternoon! You may be relieved to hear that I slept a lot more and better last night than I had done the night before, so am feeling much more refreshed and normal today. It wasn't a flawless night's sleep, unfortunately, but it was a night's sleep, and I do feel so much stronger for it. I couldn't keep my eyes open when I got into bed, and it took a long time to summon up the energy to turn the lights off, but as soon as I did I was out. This was great, but it didn't actually take very long for me to wake up again in a less sleepy state... My legs were hurting, and I was worried that I was in for another sleepless night. They weren't as bad, however, and after a certain time of tossing, turning, distracting, sweating, fighting the bed-linen and chewing my t-shirt, I must have got back to sleep, as the next thing I knew it was 6:30am and I must have been asleep for a good number of hours! It was a relief to know I'd been catching up on my hours, and I hadn't even had to resort to the painkillers to do so. Waking up, I was drenched, which must have been a combination of my warm room and my tussles as I tried to sleep - it was a relief to take my t-shirt off, turn my pillow over etc.

Being pretty early, I realised some more sleep would definitely still be appreciated, but my legs were hurting a bit again, so at about 7am I elected for some painkillers to help out: fortunately they worked and I managed to get some more decent sleeping in before I got up at about 9:30am. Since then I've succeeded in gettinng yet more repose on the sitting room sofa, and my legs are feeling much better again. I'm sure I still have a huge sleep debt, but I'm digging into it and already feeling the benefits. Yesterday I could barely focus on my eyes; today I feel human!

I'm not sure how human I look, what with my face being a bit moony again, and my gleaming bald pate beaming messages to one of our friendly local planets, but that's ok: I'm still loving the ability to stroke my naked scalp and I'll probably soon lose the extra weight on my face again. Now I'm properly online I might pop up a photo to show how I'm doing... Robyn sent me a lovely photo from John's triathlon, too, so I might put that up, while I know that before my little adventure to ITU I promised to show some wedding photos! All in good time...

Home sweet sweet home

I'm here, home, fed, watered and even connected to the internet... I'm also sleepy, so am going to have a lie-down, close my eyes and see what happens.

:-)

Long night...

Well, I started writing a blog post at 7.15 this morning, having slept for a couple of hours from midnight but then having been kept awake by serious pain in the legs... Various painkillers eased it to varying extents, but all in all it wasn't the way I'd hoped to spend my last night in! When it was a bit less bad I managed to get some reading done, and my trusty iPod helped distract me, but I'm now exhausted, having only managed those couple of hours' sleep in the end...

However, now the feet and knees are feeling better, the doctor isn't worried about them (it may well be coming off the steroids that caused the problem), and I'm on my way home! It's so exciting to be out, though it does seem to be a lifetime since I last was... Being very tired makes it that bit more surreal, but at least I'm not delusional now! I'm also aware that I can catch up on sleep much more comfortably and easily at home, so I'm not worried about missing out on it.

I'll let you know when I'm comfortably ensconced at home - yay!

Homeward bound!

Well, well, well... Samar, the registrar on the ward (who I'm sure was following me earlier on my wanderings), has said that we shan't be having the chemo on Friday after all, so as to keep closer to the original planned schedule. Therefore, he suggested, why don't I go home tomorrow for a week? Why not indeed? So I am! This is exciting news, particularly as it was unexpected, and I'm obviously enormously looking forward to some more normal time for a bit. My own bed, no observations, bacon sandwiches, wireless broadband, home cooking, walks on the beach...

The time out will, sans doute, give my brain a chance to start thinking about this experience. Going home is a little bit scary as it removes the big hospital security blanket - coming back again will be a bit nerve-wracking too with memories of what happened. But that's ok: I fully intend to carry on enjoying the privilege of being alive and making the most of everything! I'm not one to worry, even when I perhaps should: this return home is the holiday of a lifetime.

I think the fragrant Sue will be picking me up, which is very kind, and will hopefully give my father a chance to get to work. The last thing I want to do is to stop his life from functioning as normal - hopefully I can be as independent as possible, though of course he wants to be there for me when I am home. While I am still weak, I will be needing things done for me, but every day I'm getting stronger!

Naturally I don't recommend visiting Tooting to see me for the next week, though if you forget I'm sure the nurses will happily take care of any chocolates you bring. If anybody fancies the mighty trek to Chichester (a whole hour and a half from London) then you would most likely be very welcome, tiredness etc depending of course. It's really not far, and possibly quicker than getting across London to see me for many! It's my father's house though, so his decisions will be final.

Home, home, home! Yay!

My wanderings today were very rewarding. Yum lunch again, and I popped to a couple of shops to buy a yoghurt, some milk, a couple of cards, a newspaper, Private Eye and maybe a couple of other things. It's very tempting to spend all my money at the moment, as it seems so unimportant in the general scheme of things. Unfortunately my 6 months of being paid sick pay has run out now, which probably makes me unemployed too, but that's all to sort out when I get home. My adventures out concluded with some fresh air outside the hospital, just before the heavens opened and my hair could get frizzy.

There's a funny thing - I think my hair is trying to grow back quickly, but it's also still falling out so it's not getting very far. Either way, my head's not quite as smooth as it was, though I'm still loving the baldness. Baldy baldy baldy! Hair's definitely overrated.

Right, well I need to start eating up the stocks I was expecting to need to make last a bit longer... What with the steroids and perhaps my body's craving to get stronger, I've no problems with appetite.

Until the next!

Delusions of Flushing Meadows

I just wanted to clear up that whole tennis delusion that cropped up at one point last week... It was odd, I tell you, but it wasn't nearly the worst delusion I was having at all. What it was was a dream that wouldn't go away when I was awake, which was of course confusing, but it wasn't so bad because I did know it was a dream (the details are fairly irrelevant: there were hundreds of new young tennis players congregating for a competition and becoming the new stars - various hospital staff were involved in training or sabotaging them)... I couldn't necessarily shift it from my perception while I was awake, but that was what was much more disturbing: not believing or being able to accept that I was awake. I felt I was talking to the nurses, my dad, the doctors in a dream, and was convinced the room I saw around me was a dream room, not the one I was in. I got my father to pinch me, and tried to rationalise what was going on, but felt I was still asleep and needed the real me to be woken up in my real room. It was distressing, to say the least, and I do pity anybody else who has suffered such sleep-deprived delusions... As I say, the tennis dream wasn't nearly so bad, as I did know it wasn't real, but I couldn't separate it from my awake perceptions.

This post is from the Consultants' room: am back in the ward again after my wanderings. I'll post again later with news.

Smile!

Good panino!

I did it! Made it to Peabody's and had a lovely chicken and pesto panino as a reward - yum yum. And good coffee... The staff have seen quite a lot of me there over the past seven months and were lovely and friendly. It was tiring but rewarding, and nice to get into clothes again!

Otherwise not much news - spent most of the afternoon resting and reading the newspaper. Have just watched Lost, which is as silly as ever... Hopefully I'll get myself into bed soon - it can take time when I'm very tired, but I'm expecting to sleep a bit better than last night, when sore knees kept me awake! The extra exercise seems to have quietened them down now. Tomorrow the physios might get me to the gym.

Night night!

It's... me!

Well, what can i say? It's been a pretty crazy fortnight, and my brain is still barely even starting to understand it. Before anything else, I do want to say a big farewell to Grandma - again I haven't quite got my head around the fact that she's gone, but am of course sad, though by the sound of it she was ready to go. Please keep Granpa and the rest of my family in your thoughts and prayers.

My overwhelming feeling at the moment, as it has been since I've recovered enough to realise I'm alive and kicking, is sheer joy. The world is magnificent, beautiful and blessed - I feel so fortunate to be here to share it. Wow! I am just in awe of life, and ready to utterly embrace it. The feeling is astonishing, and in many ways I am so lucky to be experiencing it. I wouldn't recommend a week in ITU for anyone, but boy do you appreciate life when it almost eludes you...!

As you probably already knew, my family is wonderful. If you didn't, you do now. Their support was unquantifiable, and I know you have all been grateful too for them keeping you in the loop. So: a heartfelt and eternal thank you to them all for everything. And then some. I definitely couldn't have done it without them.

I'm actually typing this on my new telephone, which is brilliant! Many of you will know I've had the same phone for four years, so I was ready for an upgrade... I can now do clever things like photos, and the email capacity seems superb - internet's not working on the ward but hopefully this will work almost as well!

Every day I'm feeling stronger and healthier, though my body is still weak and it is of course taking time to build up muscles etc again. Today I'm challenging myself to walk to Peabody's for lunch - it will be easily the farthest I'll have walked on my own so far, but I reckon the smell of panini toasting will keep me going!

I'll let you know how I get on and any other news as the day pans out. Do keep posting your comments - they have been hugely appreciated and were another factor in keeping me going! You can text my new mobile, too, on the same number as always. I am feeling ready to see people again, though not too many at once, so give me a shout if you fancy coming to say hello. I have chemo on Friday, and will hopefully be allowed home soon after that for a bit, but we will have to see what the state of play is then.

Aha, a computer and an internet at last

Boo! Don't worry, I haven't disappeared: I've just not got my internet connection back yet and haven't managed to summon the energy to type something up to give to someone else... I have, however, snuck on to another computer (with permission of course!) to give you a bit of an update, so here I am.

The first thing I should mention is some sad news, as I discovered that one of my 'friends' on the ward (you can only get to know people so much when you're in separate rooms and aren't meant to socialise for fear of cross-infection etc) unfortunately died over Easter while I was away. She had ALL, too, though was not as far advanced in her treatment, and we'd chatted quite a few times after I moved out of a room a bit early to let her move in. I do hope she's resting in peace and am of course thinking of her family and friends.

On a different note, I'm getting through consultants at great speed! My original consultant (who was actually a locum consultant as someone was away on maternity leave) left around about the time I started heading for the transplant option, and the transplant consultant took over my care... He's now leaving too (though I'm not sure he would have remained my consultant, what with me not having a transplant any more), and so I will soon be meeting my third consultant, who was the one away on maternity leave. I hope it's not my fault they keep leaving...

The treatment itself has been, well, relatively uneventful... I've been pretty tired for the past couple of days, which has put paid to any plans to get anything meaningful done; but the worst thing has been particularly unpleasant diarrhoea. Sorry to share that, but it has far more of an effect on my day-to-day life than you might imagine, keeping me awake, hopping in and out of bed and generally not feeling very comfortable. Gah. There's not much I can do about it, sadly, so for now it's just a case of grinning and bearing it.

I've had 5 days' worth of chemo, giving me a couple of days off today and tomorrow. Friday I get some vinblastine, and then get a week with no chemo - hurrah! Who knows, if my counts are down perhaps I might even get sent home? I'm not getting any hopes up, though. Harriet's in this week, so we've been storming through '24' (with breaks for 'Lost' last night and 'The Apprentice' tonight), and it's been lovely to see a couple of other friends too. Don't forget to call if you want to pop in and say hello (ext 2566).

The wireless modem is away being mended, so I'm not sure when I'll get my own computer back online. I promise photos when I do, though! I've now got some lovely ones from the wedding thanks to cousins Lucy and Marie-Sophie, via Harriet. I'll also be able to blog more again, too, which will be nice for me. I dug out a free counter for the site, which can be found at the bottom of the right column - it's fascinating and as always touching to know how many people are coming on here. Thank you everyone!