Friday, April 28, 2006

Fever - the next instalment

So, where was I? Where were we?

Quick recap: Burning up at 38 deg C; dressed in a weird combination of clothes and being bumped over speedbumps in a taxi (which was agony for the side that had been operated on - I could feel every bump in the road and it jolted my shoulder and pulled on the stitches).

Ladies and gentlemen: get comfy and I'll continue:

We got to the hospital - by this time I think it was around 5 in the morning - it was starting to get light at any rate. We went in to A&E and, thankfully, the place was deserted - there were only a couple of other people there. We checked in and I fished out my hospital number and explained that we'd been told to come and then sat down on the sort of metal bench/chairs that you sometimes get at railway stations. Not comfy when you're feeling unwell I have to say.
I was still shuddering - visibly. I couldn't hold still. And I was half dressed in nightclothes and half in really scruffy, crappy clothes by which I'd have been mortified if I'd noticed at the time. This was such a strange time: I think that because of the fever everything felt kind of surreal. Here I was, yet again - there was such a sense of 'of course I've got neutropaenia - everything that can possibly go wrong will go wrong if I'm involved. I'm a walking nightmare....'

The triage nurse called me in: to what looked like a cupboard with a desk and 2 chairs - took my temperature with one of the fancy machines that beeps and it was down: to 36 degrees C - 'what!? That's like, normal!' - we swore blind that it had been higher than that earlier. At this point I was starting to feel like an idiot malingerer who can't even take her own temperature. 'Surprise, surprise! Emily can't do anything right: even being ill'. I can only conclude that the brief time outside had cooled me down a little. She asked if I'd taken any paracetamol - somehow this hadn't occured to me - that we could self-medicate. All the blurb had said: Panic-stations! Neutropaenia! Come to the hospital! It didn't say: have some paracetamol. So I said 'no' - probably another incident where hospital staff thought I was a lunatic.

They took me through to a cubical and sent for the Onc. doctor on call. And I had to lie on 'the bed' - 'the bed' that marks you as 'the patient', the 'ill person'; so people can stare at you and wonder what your problem is.

The SHO on call came down and it was the same woman who admitted me before the portocath surgery - she remembered me, I didn't really recognise her. (Hey, I had febrile neutopaenic sepsis at the time - give me a break!) She was of the opinion that it was far too late after the chemotherapy for it to be neutropaenia (low blood counts). But she took a blood sample and said they were going to do an EKG, Chest X-ray and take a urine sample - to try and track down the infection causing the fever.

I have an unknown infection invading my body as well as cancer - I'm starting to feel that my body hates me: why is it doing this to me?? Untrustworthy, sneaky body....

And so we sit - we're good at this by now - sitting is our forte. The waiting is not so easy however. There aren't too many people in A&E at this time; unfortunately someone who is in the next cubicle really isn't feeling well and there are lots of groans and moans of anguish plus doctors sounding very frustrated: well, you'd be pretty frustrated if someone came and said they weren't well but then were totally uncooperative about being examined etc. I think they thought it was appendicitis but she was refusing to let them examine her - or something. It's really quite horrible, having to listen to things like that: I feel sympathy but it's scary and I was so scared myself; it just make me even more terrified. I think that close proximity to other people and being able to hear other people's pain, discomfort, bodily functions was one of the things I hated most last year. I didn't want people that close to my pain and misery, so why couldn't I afford them the same respect?

Change of nursing shift came - 7.30am and with it: the breakfast trolley! Weetabix and tea for me! I must be feeling better! Well, I was feeling better than I had in the night but mostly, like I did through most of the chemotherapy, I simply felt that I had to eat. My body was trying to repair itself and it needed fuel and nutrients to do that; so, meals Must Be Eaten (and the more fibre, the better! Constipation can See Me In Hell! (SMIH)) So, I ate - Weetabix became quite a standby really because once my mouth got sore that sort of baby-mush was easier to manage. I may never eat Weetabix again.

So then a *rather large* nurse came by and stuck little sticky patches on my chest and my back and, I think, my ankles (or have I made that up? I'm honestly not sure) and hooked me up to a machine to check my heart. She had to do the reading twice because I think the first one came out with a bit of a dodgy reading. And then I toddled off down the corridor to X-ray: they wanted to put me in a wheelchair to take me there but I refused. As I said, 'I haven't lost the use of my legs yet!' Of course, there would be times in the near future when I would become very tottery on my legs, when it would be all I could do to go for tiny walks clutching onto the arm of my dad or David. Where we would have to stop every hundred yards while I rested.

This thing was going to knock the shit out of me; but I didn't appreciate that yet.

A whole new corridor to sit in while I waited for my Chest X-ray - my third in a month. It was kind of odd to be sitting there in my nightshirt in a corridor, shuddering - other people around me must have thought I was pretty scary. I thought I was pretty scary.

Afterwards I toddled back to my cubicle where my folks were waiting, provided my urine sample (deep joy: why has noone come up with an easier way of doing this yet?) And we waited some more.

Finally - they decided they needed to admit me..... :( My white blood cell count was low. Very, very low - 0.9 low. I think the normal range is 9-11 and they won't give chemo if it's below about 4.5. So, basically, I have an infection: but they can't pinpoint where; and I have virtually none of the little blood cells that are going to kill off the infection - this is bad. Although, of course, noone is really saying this to me at this point. I think the SHO was a little abashed because she'd said that she didn't think it was going to be a problem with my blood counts.

Guess what, SHO-lady! This is me you're dealing with! Things you don't expect are always happening to me. In fact, you should take it as read that if you don't think it's likely then it's definitely going to be the way with me. I am that contrary.

It took them a while to get themselves sorted out, to get my notes together and me into a wheelchair and, thus, I was taken back to my favourite place (not):

Moore ward.

Wednesday, April 19, 2006

50 things that make me happy

I rather gave up on this: not feeling so terribly happy. It seemed like too much hard work but, after a lovely long weekend in Wales with super friends I'm provided with some new catagories. So, the next 10:

21) Lovely weekends in the countryside with my favourite friends
22) Endless grassy banks of daffodils
23) Seeing lambs do that little bouncy thing than makes them look like rabbits
24) Time with my mum
25) Expeditions down little country lanes - just to see what's there
26) Time - not on a schedule - feeling that I have time to dowhatever I want
27) Frou Frou: Must Be Dreaming
28) When Minnie the cat from a few doors up came into my flat at the weekend and plonked herself down in my doorway - looking like she'd moved in
29) Going to the cinema
30) The film White Christmas

I'm making no promises about the next 20......

Wednesday, April 05, 2006

I am so assaulted by the memories - of silly little details. My fingernails are nearly clear again - they were hideous and yellow/orange and stinky because of fungal infection after the Taxotere. It's just my thumbnails that are all ridged - you can feel a ridge for each chemotherapy treatment and one is still kind of purple and malformed. It's kind of warped and curled out of shape. They're growing out slowly - as are my toenails. But I was more upset by the prospect of my nails falling out that I ever was at the thought of losing my hair.
It was after the first Taxotere treatment that my hands started to turn hideous. It started with a red, slightly crusty rash on my hands which I was told to take anti-histamines for (they didn't help); then the rash started to peel off. Eventually, all the skin between my fingers and thumbs, on my palms, around my nails peeled off. I looked like I had some sort of plague. I slathered my hands (and feet - it was my feet too) with E45/aqueous cream in order to try and stop it being too bad. I had to wash with it too - soap aggravated it all - and that meant washing my whole body in aqueous cream because it's a bit difficult to wash without using your hands....
I almost don't want it to clear up - because I lose touch with the reality of what happened. And, for some reason, it feels important to hang on to the reality: even though the reality makes me feel bad. That badness and sadness is a known quantity and if there's one thing we've learned about me: it's that I don't like unknowns.....
I would rather cling on to feeling bad than let go and make room for good stuff.