District nurses

After my little run-in with febrile neutropaenic sepsis I had to delay my next chemo treatment by a week, to give my body a chance to get my white blood cell count up to a safe level.
At my next clinic appointment my consultant decided that after the rest of my chemo treatments I would have G-CSF injections - they are a growth factor that stimulates the bone marrow to make more white blood cells; which, of course, are one of the things that the chemo kills off, leaving you with little protection from infection. So, for five days on the week after my chemo treatment a district nurse would come to my house and give me a Neupogen/filgrastim injection. The district nursing system is a fantastic thing. I paid nothing for this; I would just telephone the DN office or the nurses from the chemosuite would send them a fax with the dates I needed the injections. I would be given the prefilled syringes to take home with me after chemo along with my pile-o-drugs - also all for free. And they would live in my fridge - they had to be kept cool for the week and I had my own sharps box for the syringes which lived under the sofa (of course!)

So, the first Monday morning after my second round of chemo, Mark turned up. Mark was a very sweet, Scottish (I'm a sucker for a Scottish accent), male (in case you hadn't noticed) district nurse. And he was a sweetie, made me feel much better. Asked about how I was feeling and did the injection for me. I point-blank refused to do them myself. Various people kept telling me I could do them myself. My reply was that if I wanted to stick needles in people I would have gone into the medical profession and that there was a reason I went into libraries. I didn't see why I should do them when there were all these people who had been trained to do it!

So I had a lovely mix of nurses over my six months - a couple of great New Zealanders; Ema who just made me feel so much better on one of the days after Taxotere when I felt like I'd been beaten black and blue with a baseball bat and was practically in tears with the pain in my back and numerous others.

I resolutely never looked when they did the injections - which went into my abdomen. They were always quite uncomfortable because they would sting as the liquid went in - the needle prick didn't bother me so much as that stinging did. It was always interesting to see who was the best at giving those injections - I definitely used to be pleased when one particular nurse turned up because she was brilliant - I don't really know what she did differently but I would barely feel a thing when it was her. I liked having the district nurses come because it made me feel a bit safer - that there were people who knew what was what seeing me at the time when I was most at risk of the neutropaenia coming back and I suppose I felt that if there was any problem then they would recognise it and send me off to the hospital.

The other outsome of the neutropaenia was the strict instructions to use Corsodyl mouthwash several times daily to prevent ulcers or cankers or other sores in my mouth. This stuff is weird, I was given the mint flavoured variety and after the first taste I just thought, mint. After I spat it out I thought, ooh, zingy and then I thought 'yuck' - It seemed to mix strangely with the vile taste I already had in my mouth and made everything taste even more peculiar - including water. So, I was really unwilling to use it: but I did. And the only time I got a mouth ulcer was when I didn't use it for a few days because I had run out. I started using it pretty sharpish after that and was very grateful not to have anything worse go on with my mouth. To be honest, the bad taste was so horrible I was glad not to have any further complications. I just felt like I was in a permanent state of feeling like I hadn't brushed my teeth for months, even if I'd just cleaned them; and nothing tasted right. Everything just tasted strange; I stopped drinking tea and coffee: I just didn't fancy them - they didn't taste good enough any more. Chocolate and sweets went - sugar seemed to leave a really horrid aftertaste in my mouth - probably why I lost weight throughout my chemo treatments. If only I hadn't put it back on again. And I stopped eating cheese because someone told me I shouldn't eat things I really liked while I was having chemo because it would put me off them. Funnily enough, I don't really eat cheese at all now and I used to eat it by the bucket-load.....well, quite often. And no, I haven't given it up because of the whole 'don't eat dairy, it gives you mucus and cancer' thing. I just got out of the habit.

Anyway, so that is the story of my lovely district nursing team - thank you, y'all!

Playing with my port - 2

And so they left me and my family came back and I was feverish and shaken and so scared. I had been nervous about the use of the port before she'd tried and now I was convinced that it was faulty and they'd have to remove it and put another one in. And it would probably have to be on the other side and then I'd have two of these scars (a matching pair!) and try explaining that to people.
My parents had rung David to let him know what was going on - poor soul - I think he must have been so scared - he wasn't in London and couldn't get down to see me that day.

After a while, Keith came by - he was his usual cheerful self - nothing seems to throw him. He massaged my legs and feet which was strangely reassuring. I think it's a human-touch thing - it's comforting and reassuring to be touched. We are tactile beings and we need to feel connected. Keith offered to lend me his CD player and a couple of relaxation CDs after I told him what was going on - he could see, anyone could see, that I was in a total state.

Eventually Ivy comes by - she's another reassuring sort but she explains that the chemosuite is really busy so we'll have to wait until things have quieted down a little.
So we carry on waiting - it's amazing how much you wait.
And the sun moves round and streams through the window and it gets hotter and hotter and I was already hot to begin with! One of the nurses finds a fan which stirs the air around a little.

Finally Ivy comes back - this time my parents are allowed to stay in the room. She has me lay down and she starts to feel the whole area around the port - trying to feel where it is and how it's lying - I am like the proverbial board, and so tense; I grip my dad's hand and he tells me to squeeze, hard. Every time Ivy presses or touches the area it's all I can do not to writhe and wince. It hurts, my shoulder is so stiff and I don't want anyone to touch it - but I let her. Once she thinks she's found the right place she puts the needle in - when the needle is put in it goes through the skin and punctures a silicone rubber bubble covering a chamber which connects to a catheter which is connected to a vein. The bubble is self sealing, so when the needle is removed, it seals over.


Unfortunately because mine is so new, I'm still bruised and sore so the pressure of the needle going in presses the base of the portacath back into an already sore spot. The needle goes in, but again, nothing is coming out. I'm freaking - I have this foreign object inside me - freaks me out already and in addition, it's faulty, it doesn't work, it hurts, it's all bad, bad, bad!
Ivy tries to move it around, pushing it down, moving it around slightly - it's excrutiating, every time she does it a shot of pain goes through my shoulder - I am brave, I lie there and take it and squeeze my dad's hand and try not to gasp too much but I can feel it catching and grating. My mum stands at the bottom of the bed - holding my foot. I think she must have found it very upsetting - it's hard to see your child in pain and not be able to help. After about half an hour Ivy says that it seems to have been put in quite deeply, that the stitches are in the way and that it's quite swollen. She thinks the problem is that these factors are preventing the needle from going far enough into the port - she wants to try a 1" needle. However, she'll put some Ametop cream - a topical anaesthetic cream on the area to try and decrease the pain somewhat. The cream has to be on for 45 minutes before it really takes effect so Ivy goes away for her lunch.

I can't remember that time really - other than a feeling of sheer and utter panic - I often described the way I felt last year as 'twanging with anxiety' and that's what it often felt like - I was so wound up and tense with anxiety that I felt like the vibration and sound and tautness of an elastic band stretched out as far as it will go. I was at snapping point for a year - I never knew if I was going to completely lose the plot from one moment to the next.

Ivy came back, she cleaned off the cream and put the new needle in - it still hurt. I think it was the underlying bruising and pulling of the stitches that hurt more than it was the needle going in. This time a little bit of blood pulled back out into the syringe but not much and it was hard going for her - it still wasn't really working. Ivy did move it around a little more, with no better results. Eventually she said that she wanted to stop - she could see how much it was hurting me, it wasn't working properly - probably because it was swollen and the stitches were still in. She would put in a cannula for the antibiotics and we'd try again another time. She didn't want to hurt me any more.
She redressed the portacath site and stuck my hand in hot water to bring up the veins and put a cannula in the back of my hand. Which she did beautifully, without a hitch, so that I barely felt it - why couldn't they have done that in the first place?
Nightmare nurse came back and injected the first lot of antibiotics into me - it felt cold in the back of my hand and up my arm but hopefully they would start to do their job.
They still had no idea where the infection site actually was.
This is part of the view I could see from my room.

Playing with my port - 1

I hate, hate, hate being moved around in a wheelchair: it makes me feel so conspicuous. Like everyone is staring at me; like I must be ill. Well, when they wheeled me up to Moore ward I hated that and I hated having to go back there.

As I was wheeled onto the ward we passed Trish (my breast-care nurse) who was surprised to see me and asked what I was doing there. I have no memory of what I replied. Probably something flippant - it usually was. Laugh before you have to cry and all that.
I was taken into a room on my own. It was a corner room on the same level and side of the building as the chemosuite so it had that fantastic view over London again but this time the view was all mine. Later the sun would stream through those windows and turn the place into an oven.

A nurse came into the room with me and my parents and she explained that I would have to stay in here and not come out and that they would prefer to keep the door closed. People could visit but they would have to wash their hands and use disinfectant spray on their hands and then put on plastic aprons and gloves before they came into my room. This was to try and protect me from germs. For the same reason I was not to be brought flowers or plants or fruit because any mould spores could be very bad. She told me that it would be much better for me to eat only cooked foods: no salads - again, to try and make sure I wasn't exposed to any more germs.

Things suddenly seemed much more serious - until this point I don't think I'd really grasped quite how serious it was.

In retrospect I chortle at the gloves and aprons - I honestly don't see how that helped to protect me from germs. Why weren't they being made to wear masks, what about shoes, what about the backs of people? I'm firmly convinced that they were really just to provide some entertainment for me while I was stuck in there on my own.

The nurse went on to say that they needed to give me IV antibiotics and that they wanted to access the portocath in order to take a blood sample to see if the infection was there and to use it to inject the antibiotics. This would be the first time it had been used. In fact, it was still covered in a dressing. In fact it had just been covered with a new dressing in A&E. One of the nurses there had cleaned it while we'd been waiting. And we'd watched and learned how you *really* use those dressing kits. What you actually do is to pour the contents of the saline sachet into a little compartment of the kit and then you take pieces of the gauze using the tweezers and dunk it in the saline and then wipe the wound. Not gently dab it - oh no! Quite firmly wipe it; several times with new pieces of gauze each time. No ungainly pouring, no tentatively dabbing - I was rigid like a board while she did it - and I think I may have been holding my breath too. Not because of pain or discomfort - I think I just felt a bit like, here was this place where I'd been cut open. The inside of my body had been exposed, opened and although it was healing and although it had been stitched up I think I still felt a bit like one wrong move would result in my insides falling out.

My parents went off at this point - I think they were probably gently encouraged to leave - and my ma probably was desperate for coffee by this point. Trish came in and talked to me, reassured me and offered to let Keith and Elaine know I was here. Then the ward nurse came back - she was Scottish, I recall and she brought two of the SHOs with her and various accoutrements to access the portocath. Without really asking me or talking to me she started talking to the SHOs about how to access a port. Saying things like "this is how you're supposed to do it but I usually just do this...." and I'm laying on the bed like a lump of meat - really scared. I've never had this done before; I'm feverish and this woman is about to do something to me that I don't want done and now she's saying that she doesn't do it the way you're supposed to.....she's not earning my trust!

She peels the dressing off and cleans the area with an alcohol wipe and then presses the area a bit: ow! It's swollen, it's still got stitches in that pull and I guess I was kind of bruised too. Anyway, damn uncomfortable. Then she puts the needle in (all the while talking to these other people) and then tries to get blood back from it - nothing. Faltering in her spiel to SHOs (HA!), she tries to 'adjust' it, i.e. move it around whilst the damn thing is in me - ow! I am, by this point, rigid as a board and either not breathing or hyperventilating, or both. She then says that she's going to get Ivy from the chemosuite to come and look at it; apparently Ivy's *braver* at *playing* and *poking around* with them than her.

At this point my fingers were tingling - pins and needles and I asked why and she said 'not enough oxygen' - I guess I had been holding my breath: can you blame me? So, now we had to wait for Ivy - she was busy in the chemosuite (the chemosuite can get horribly busy at times). I've been poked and stabbed and now I'm waiting for someone to 'poke around' - don't forget the fever, the stitches and the stiff shoulder in this mix - can you imagine how great I'm feeling at this point? Don't - it was crap.

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.