Thursday, September 28, 2006

Why protect mealtimes when meals are so rubbish?

Unfortunately, having finished the last post optimistically stating that I was feeling better and seemed to have things taken care of, I then proceeded to feel pretty nauseous again, and over the past few days have thrown up a couple of times and had some diarrhoea... I am now off most of the antibiotics, however, as my temperature has settled a bit (though this evening was above 37 again), and at the moment my tummy also seems more settled. However, I'm well aware this could be a false alarm again, so I'm not getting too excited!

As a result of feeling pretty rubbish, I haven't had much chance to do anything, save watch Spooks, Lost and O! Brother Where Art Thou. Today I finally managed to attack the OMV database, which has of course fallen back under my control, and unfortunately it looks as though there might be quite a lot of tedious work to be done there... Lucky I've not got anything else going on, I guess.

Today the gorgeous Row, Jo and Aoifeu visited, which naturally cheered me up a lot. There was a moment of panic, however, when they arrived at 5.30pm to discover that the ward now has protected mealtimes, meaning no visitors between 12.30pm and 1pm, and 5.30pm and 6pm. I hadn't been told this, but even though I had sensibly declined hospital supper, I wasn't allowed to have them in my room until 6pm. So, easy solution: I went out instead! We only went as far as the Atkinson Morley Wing (the plush part of the hospital), but it was good to be out of my room. But let this be a warning! Do not visit during protected mealtime! At least not when I'm neutropaenic, which I probably will be in the next few days.

One last rant, though: the food has got no better... How can they feed it to us?! My tummy is a bit tender anyway, and even the smell makes it gurgle. Hmph.

Monday, September 25, 2006

An early scare

Well... My first two days back in haven't quite been as smooth as I might have hoped... I had occasionally felt a little rough in the days before I came in, but it was only slight and I put it down to natural chemo-provoked nausea. However, on Sunday I felt a bit worse, and progressively so as the day went on. What's more, my temperature started climbing, so I wasn't all that surprised when the evening saw me throwing up and spiking a temperature of 38C. I did feel pretty horrible then, but some anti-sickness and antibiotics did the job, as I then slept like a log and felt fine when I woke up this morning. And my temperature was back down! So that was a relief. I still have a neutrophil count of 1.6, which means I'm not neutropaenic, so that probably helped, too.

Not much else has happened, apart from Europe winning the Ryder Cup (yay!) and Pompey finally losing and conceding a goal (boo!) - I've been sleeping quite a lot, perhaps due to the relatively heavy load of chemo I've been for the past few days. Tomorrow is the final cytarabine before a few days off.

Sadly the internet is still not flowing on the ward, though it is still in the pipeline. Ho-hum.

Sunday, September 24, 2006

Room phone number

2566.

Friday, September 22, 2006

It's that Back to School feeling

Tomorrow I shall return unto the hospital of St George, which feels a bit strange after two whole months out of it... No doubt I'll be back into the routine of it very quickly, but at the moment being an inpatient is a distant memory. My blood counts on Thursday were very good again (higher than last week, indeed), but the cyclophosphamide (ie the chemo I had on Thursday) is likely to have hit them a bit. What's more, I have four consecutive days of chemo now, so it's much easier and safer to have me in than not. If my blood counts do not drop too quickly, I should still be quite free, and - who knows - perhaps even able to pop out for the evening. I'm not counting any chickens, though.

On Wednesday evening Harriet and I went to play at Tomandalice's house, meaning that I managed to be their first AND second guest, which is a great accolade. It's a good big house, too, and they cooked us up an Indian extravaganza. And ice-cream. Though that wasn't cooked. We had dropped Heidi-hi Wiggleswothergill off on the way up: Heidi-hi is one of Harriet's lunatic friends, and delightful to boot, so she brought an extra dimension to the days she spent chez Norton. I think she and Harriet have now dragged their partners (Duncan and Alan, Heidi-hi's husband) to the depths of Scotland to be silly for a weekend.

It has been great being a normal person again, able to go out, see people and have a few beers, and I think I've done a pretty good job of making the most of it... Hopefully, though, it won't be long before I'm out and about again, when I reached the fabled Maintenance phase.

Here, thanks to my new friend Penny, is a photo of me, Hannah and Andrew at Hannah's wedding last Saturday. My pose is perhaps a little over-exuberant, but they are two of my closest chums, and Hannah was married!Great days, great days.

I'm hoping I might be able to sneak online when in Ruth Myles, this time, but whatever happens I'll post my new extension number when I'm there. And don't think that just because you've visited before means you don't have to visit any more! Hahahaha!

Wednesday, September 20, 2006

Those photos

Mini-adventure
Robin rockin'
Girls (you may need to click for larger version)
(thank you to Metro)

Soon (perhaps Thursday/Friday) I should also have photos from the wedding, the family shindig and our chicken chez Big Phil (where, I forgot to mention, I had a laughing fit... It was one of those laughs that you just can't stop, and your ribs are aching and the tears are streaming down your face and you have to throw yourself onto the floor to try to stop the nonsense... Laughter is the best medicine?).

Tuesday, September 19, 2006

Why are pirates so cool?

Because they AAARRRRRRRGGGGHHHHHH! Today is National/World (I forget which) Talk Like a Pirate Day, and I feel a bit bad for not letting you know sooner... This post is also my TWO HUNDREDTH post on this blog, so that's a nice milestone too. It's going to be a pretty random post, though, as there are lots of different things to put on today. There should be lots of pretty photos but my connection's dodgy so they're not uploading. I will keep trying, but for now you'll have to use your imaginations ;-)

Firstly, I promised some photographic evidence of my Mini adventure the weekend before last...
[GRRRRRR IT WON'T UPLOAD!]
This is me and Rachael in the back as we drove down the motorway, with the wind through our hair. Well, through Rachael's hair, and over my bald pate. Exhilarating!

On Wednesday I went to see (the) Requiems, and they did rock. Here's my cousin Robin throwing one of his many rock poses...
[GRRRRRR IT WON'T UPLOAD!]

On Thursday I had the final daunorubicin of the phase... Did I tell you that it turns my wee red? I was a bit worried when going to the loo in pubs that someone might catch a glimpse and call a doctor, but fortunately nobody did! I also caught up with my overachieving friend, Charlotte, which was lovely, and stayed with her sister Nicola. Hurrah!

At some point over the past few weeks I saw this cartoon in one of the 37 different free newspapers now available in London (though 'news'papers does stretch it a bit). It made me laugh.
[GRRRRRR IT WON'T UPLOAD!]

On Friday I stayed at Tomandalice's - I was their first guest in their new Sandhurst lodgings. Tom was out on exercise all night, though his group were having a quiet moment, so he popped home for a cup of tea and to say hello at about 11pm... He then returned at 8:15am to have a bath, breakfast and get changed into clean kit, before heading back to work. Mad! I asked the not-unreasonable question, "Do you work all day every day?" Apparently not usually.

I've been reading 'The Book of Lost Books', which is proving to be fascinating. It is an incomplete history of books that have been lost, were not completed, ended up very different to how they were going to be, or were planned but never written at all. From the great Greek authors right up to the 20th century, it is a very entertaining look at what could have been. It is frustrating to think of all those potentially brilliant works that we will never see! I can't currently remember what I read before that: I'm hopeless at remembering when I read what, so sometimes I even find myself reading a book for the second time, and only realise when I suddenly get to a point where I know what's about to happen...

On Saturday I had a wonderful day at my friend Hannah (L)'s wedding. Hannah was my best friend when we were living in Naples, and was marrying an army chap she's been with for several years now. It was a fab day, and I made some lovely new friends by throwing a few shapes on the dancefloor (hehe), as well as catching up with Hannah and family, and my oldest friend, Andrew. It is a bit bizarre to think that Hannah's now married, though... Anyway, best of luck for her! She's off to live in Germany, where it'll probably be easier to visit her than when she was down in rural Devon.

Sunday was a lunatic evening, as my entire immediate family were at home, with assorted appendages (Alice, Sue and Laura), celebrating Freddie's departure for Rome on Wednesday. My siblings and father can be a bit silly at the best of times, so throw all of us together and you end up with a very jolly evening of bad jokes, worse singing and much merriment.

Last night I had an interesting chat and realised that my 'I don't want to be defined by my leukaemia' post was probably slightly off the mark in at least one sense. Harriet and I, and Harriet's friend Heidi, went to Big Phil's for a lovely meal, and I was telling them how I'd like to see whether I can get any freelance journalism work, come November. I added that, having had leukaemia, hopefully I'd have a different angle: something extra to write about or to colour my views. And I realised that I do not feel that leukaemia is a burden - it is not something I will seek to detach myself from when it's over. It has been part of my life experience; it has formed my character; it IS an important part of my life. That is not, of course, to say that I will define myself by it; but it does mean I will not ignore that part of my life. On the contrary, I will try to use the lessons learnt in a positive way.

Tomorrow (Wednesday) I'm going to Tomandalice's again, this time with Harriet, and then on to St George's for Chemo Thursday. Cyclophosphamide this time! Woooooo! I don't think I've had that yet. On Saturday I'll probably become an inpatient...

Wednesday, September 13, 2006

Like a yo-yo

Just a quickie before I go up to London again (for Chemo Thursday, of course, but also an OMV meeting, a gig by my cousin's band - see '(the) Requiems' in my links) - and the occasional social event. What's more, I'm going to a wedding on Saturday: hurrah! I guess I'm at that age now, when people start to tie the knot...

Anyway, I wanted to mention some other excitements I had last week, which included a lovely dinner chez Ellie and a Mini adventure on Saturday morning. Upon discovering that Katie and Rachael were getting a lift to a hen party at Goodwood and Hayling Island, I gave up on the idea of getting a train down (as that's my neck of the woods) and ended up having a hilarious trip down South in an open-top Mini Cooper... Photos to follow (as I'm rushing for a train).

I've also discovered my head is great for writing on! More about that later, too.

Sunday, September 10, 2006

Accidentally playing the cancer card

I was in London on Friday for Lou Noble's farewell drinks before she goes to New York for a couple of years, and after a few drinks at All Bar One in Clapham, we went on to the Clapham Grand to continue the celebrations (blood counts still good Smile).

Katie C and I were a bit behind the others, so got to the queue just as another group of people did. In order to be with the rest of our friends, we skipped in front, and one of the people we'd gone ahead of addressed Katie:

Randomer: "Go ahead, I don't mind at all as your friend [ie me] has a silly hat [I was wearing my Buff]."
Katie: "Thank you."
Me: "You never know when a silly hat will come in useful."
Randomer: "So, what, have you got cancer or something?"
Me: "Erm, yes, actually."

[Randomer's face drops]



[long pause]

Randomer: "No way... Seriously?"
Me: "Yep..."
Randomer: "Oh my God, I'm so sorry. I can't believe I said that."
Me: "Don't worry, it's not a problem!"
Randomer: "Seriously, I'm so stupid, I feel so bad."
Me: "It's ok, really, I'm not in the slightest bit offended. I'm quite happy with it."
Randomer: "No, I'm so sorry. Let me pay for your entrance."
Me: "Don't worry! I mean it, there's no reason at all you need to pay for me to get in."
Randomer: "I insist. I can't believe I said that. That's so bad."
etc.

He wouldn't take no for an answer, and paid my £8 entrance fee! I wasn't quite sure it was ethical tolet him do so, but hopefully it appeased his conscience and he recovered from my surprise response...

Long live the cancer card!

Tuesday, September 05, 2006

Fun fun fun

Thank you for all the reassuring comments you added to my last post, even if I can't help but doubt I'd be hearing such compliments if I hadn't got leukaemia in the first place ;-).

Anyway, it's been another decent time between posts, and once again that's due to FUN! I've been up to all sorts, as I continue to ignore my illness as much as possible. This is made easier by continuing high blood counts, as shown on Thursday:
  • WBC 5.1
  • Neuts 3.7
  • Hb 11.9
  • Platelets 245
FAO Katie Carson: that means I'm healthy. Almost as healthy as a normal person, indeed! The neutrophils are flying high, which means I have a good number of cells to fight bugs and infections, and the haemoglobin is pretty good, so I'm getting a decent amount of oxygen around my body and therefore have enough energy.

So Chemo Thursday proceeded as expected, with, erm, some more chemo. I had got up exceedingly early in order to get there, which at least had the benefit of assuring me that I can still get up early if I need to... I also seem to be in the habit of having just an orange from the delights of the hospital food trolley, which both times has been a complete disaster and left my much stickier and messier than before. Perhaps I'll learn. Or perhaps I'll be stubborn and hope that this week is 3rd time lucky. There were some interesting characters in the Day Unit with me, but I shan't post about them in case it's against blogging ethics.

Then I popped along to Bushey Park in order to join Amy's and Alex's joint birthday celebration picnic, which was delightful. The people I knew all left just before or just after I arrived, but I like to think it wasn't personal. Then I whizzed back into town, saw The Hof briefly in order to relieve him of the OMV Secretaryship - hurrah! I'm now OMV Secretary again, which is great news and will give me something to really get my teeth into. We had a ceremonial handshake, but perhaps more importantly he gave me things like the database. The evening was a relaxed affair at Sheila's: she cooked and was very self-deprecating about it, but it was actually lovely.

After that long day, Friday was much easier, involving an enormous lie-in and a relaxed time in Regent's Park with a newspaper before finding Marie-Anne and her friends to celebrate her birthday. That, too, was good, and included a chance to catch up with some of her friends whom I only ever seem to see at her gatherings... I then trundled down to Strawberry Hill to stay at the house of Jo, Sooz and Aoifeu, though only Sooz was there. I sat up chatting for a while, despite having an early wake-up ahead of me: Row was coming to pick me up at 7.30am...

This she did, and we set off for Longleat (with John and a couple of Row's friends too) to go to the Red Bull Air Race... What fun! Our intention in getting up early was to get there in time for various events before the actual Air Race, but we entirely missed them due to abysmal traffic. It took us six hours to get there, though at least we were in time for the race itself. Indeed, we soon discovered we hadn't missed any of the air displays, which hadn't happened due to the weather conditions, and the race itself was postponed by a couple of hours. That was fortunate, as it gave us plenty of time to get across the site - it took about half an hour to walk 100 yards, due to there being one narrow bridge and tens of thousands of people. Anyway, we got something to eat, and set about entertaining ourselves. It was a bit rainy, a bit cold, and pretty windy, so I did what any self-respecting Englishman would do, and bought an ice-cream.

Time passed, and Steve Rider (for it was he) tried to keep the crowd excited with the occasional amusing interview with Lord Bath, and with the pilots. Cometh 4pm, however, cometh an announcement that, as the winds had got up again, it was looking as though there might not be any racing after all. Hearing that a final official decision would be made in fifteen minutes, we rushed back to the car in the hope of missing the rush (the weather looked extremely unlikely to improve in those 15 minutes). However, we happened to be in the middle of the site, so getting out of the car park took about an hour and a half. Oops!

Remarkably, in spite of traffic jams, our failure to get there in time for the paper aeroplane competition, the cancellation of the air race, and our trek to just get out of the car park, we all decided we'd actually not had THAT bad a day. I blame the banter.

So then, being in the West Country anyway, I thought (prompted by Sooz's suggestion) I might pop up to Bath to see Jo and go around the Great Western Maze. Originally there was going to be a Night Maze on Saturday night, with hog roast, music, maze etc, but they couldn't get a licence for that night (it's now on 16th September if anyone's interested), so I joined Sooz in staying at Jo's, going out on Saturday night, and, most excitingly perhaps, doing the maze on Sunday! We took an hour and three quarters, and then wandered into Bath to kill time before Jo and friends finished work. This picture's of us at the Royal Crescent. I forgot to take any at the maze.

On Sunday we were joined by Dom, too, so we went out again, and then went back and played cards until the early hours of the morning. As you do. All in all it was a delightful couple of days in the Bath. I then returned home, and slept for a million hours on Monday night.

Isn't it wonderful that I'm able to do these things? I didn't really recognise quite how good it was until it had all finished and I was back home, but to be rushing all over the country, seeing friends and having fun, is just brilliant considering all the time I've been in hospital, not to mention my little ICU trip just a few months ago. I've also been pleased at my managing to keep myself motivated to do all this, as regularly I've thought, "oh, maybe I'll just go home and not bother with all this rushing around". I do still need lots of sleep, and do get tired and lethargic, but while I have the energy, the immune system and the invitations, I'm determined to make the most of my social life! I do appreciate it even more after so many months without one... Or even, with one confined to a hospital room.

Before getting too carried away, though, do I have to remember that I'm far from being in the clear. My blood counts are certain to drop during this phase and the next of chemo, so I'll not only have to be careful, but also be back in hospital for a time. And unfortunately having got through one trip to ICU does not preclude the possibility of picking up another infection when counts are down. My friend Jess is still in a semi-awake state, and though she's started to make some small improvements, there's a long way to go. Please continue to pray for her. As I look and feel much better than usual, it's sometimes easy to forget I'm still undergoing treatment for leukaemia, and though that's quite nice in some ways, I think it's important to remember.