Chemo tips (with a baked potato side)

I've been getting quite a few hits recently from people searching for 'first chemo treatment' - which is sad (for them, not me).
Hi there if you've reached me by searching for that and I'm so sorry if it's information for *your* first chemo treatment; well, I'm also sorry if it's someone else's first chemo treatment. Either way, I can guess that you're having a tough time. (understatement, I know)
The world is probably upside down now - especially if you're having neoadjuvant chemo (i.e. before any other treatment, like surgery or radiotherapy) in that case, you may have had a week or maybe only days since being told the dreaded cancer words. Or if it's adjuvant (in addition to other treatments you've had) you may be recovering from surgery or radiotherapy.
Whichever, this is a hell of time and chemo isn't going to be easy. I'm sorry to tell you that. You'll do it; you'll get through it, even if you have to claw your way to the end of it; but you'll do it, we do it, I did it - because I wanted to be there at the end to tell the tale. I wanted to be alive.
I don't want to scare or upset you; but I don't think lying is the answer - chemo is hard. It goes on for a long time, which leaches away your strength - mental as well as physical. It can come with side effects which can make you feel pretty miserable at times. A lot of this will depend on what chemo combination you're on. Some are worse than others.
My first chemo treatment was overwheming - it was a new and scary time, in a new and unfamiliar place, with new and unfamiliar people. Not a good combination.
Please, don't run away - take control over what you can.

• Make sure you have a good support team - take family or friends with you.
• If you can visit the place where your chemo will be given in advance of your first treatment - then do it. I know you'll not want to, but then it's a bit less stressful when you have to go back.
• Try to have one specific nurse look after you each time - build up a relationship with them, you'll want someone you feel comfy with and eventually you'll want someone who knows you and your veins.
• Take a snack or lunch, depending how long you'll need to be there - having your own food, that you like and you know you can eat will always be better than whatever the coffee shop at the hospital has or the dreaded limp sandwiches that they bring round in my chemosuite
• Try taking an MP3 player or a personal DVD player with headphones - it can help block out where you are.
• I like crossword puzzles, Sudoku and the like - they're irritating enough to distract me and keep my brain busy - it makes it *much* easier to ignore the other people there.
• Take a shawl or a wrap - you may have to take off sweaters or cardigans so they can get to your veins for a cannula - the liquids going in can make you feel cold and it's nice to have something warm, fuzzy and fluffy to comfort and warm you.
• Drink lots of water the day before treatment and enough on the day to be hydrated - it makes it easier to get cannulas into veins if you're not dehydrated.
• Don't drink too much water on the day because trying to manoeuvre a drip stand to the loo can be challenging; plus, I hate to move around when I have cannulas and tubes attached to me!
• Do drink (water) when you get home when you can bear to - it'll help to flush all that stuff out of your system.
• I had a chemo 'uniform' - I wore pretty much the same thing each time. I had a portocath, so I wore a button down the front shirt with a vest top underneath that meant the port could be reached easily without creating modesty problems. If you're having a cannula put in your arm then make sure that your sleeve can be pushed up and left up easily and isn't too tight. Wearing the same clothes each time made me feel in control and it also didn't 'contaminate' the rest of my clothing by associating it with chemo.
• If your chemo is one that causes nausea and vomiting or diarrhoea, eat what you can when you can - the main thing will be to get something inside you that you can keep down or in your stomach. Diet rules get thrown out the window. If icecream is what works - eat it.
• Don't be afraid to challenge medical people - make sure they introduce themselves before they start doing things to you; ask what they're giving you and why (if you want to know).
• If you're given lots of medication (or any) to take at home - anti-sickness, steroids, painkillers, whatever - ask them to write down exactly what you take for what, how often, when, which you can have together and which not. They may tell you these things but you will forget. Be it due to stress or feeling generally crap - make them write it down.
• No-one likes having needles put in them, but remember you can take control over when you let it happen - they can't do it until you roll your sleeve up and hold out your arm!

I hope that some of this has helped give you a strategy for coping with your first chemo and all the subsequent ones. The experience of having to go and have it done gets better after the first time - you know what to expect, you know the 'good' seat in the chemosuite, you know the nurse that's on your wave-length, they know who you are when you walk in and they say 'hi, how's it going?' and mean it. And all that helps to make you feel a little more in control.
Good luck, I have my fingers crossed for you; drop me a line, share how you're feeling, how it's going - I'm a good sympathiser and I'll listen.

Long time, passing

::Sigh::
Where did I go? I guess December has gotten the better of me.
What have I been up to?

Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.

One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.

So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.

Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.

The end.

Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?

Day of reckoning

I didn't know what to write today and that is because tomorrow is Clinic Day and CT results Day and that's pretty much consuming all the space in my head currently. I slept appallingly last night but I don't feel like I'll sleep tonight either.

Tomorrow is also crap appointment-times day. I've got to get there at 9am in order to get my bloods taken in the chemo-suite. I much prefer Megan in the chemo-suite to do it than to go and wait for the general bods in the blood room but that means I've got to be there bright and early so that she can do it before it gets busy (and boy does it get busy later on!). I cannot begin to tell you how much I regret letting them persuade me to have my portocath removed. I should have trusted my instinct, which was definitely scared stiff about having it taken out and then needing it again. But I did it because I thought it would help me to move on - to stop being a cancer-patient - sadly I'm not sure that even worked really. I still have it somewhere - perhaps they'd put it back in for me.... ;) (KIDDING!) Anyway, then I have to wait around until 11.15am for my appointment with the oncologist; but the last two times I've been they've been a doctor short and things have been running *so* slowly and by 11.15am they'll have had lots of time to get behind schedule so I could end up having to wait for *ages*. Which is really bad for my nerves - I also tend to forget all the questions I wanted to ask if I had to sit around. The panic takes up all the room in my head. The receptionist said that if I turned up early then I might be able to be seen earlier; but if I don't get slotted in earlier then I'll end up having to wait in the Onc. corridor for over an hour - and that really will drive me to insanity. Decisions, decisions....

Plus, I'm really hoping that we don't have a replay of the last two prescription-cock-ups. I'll be scanning the sheet veerrry closely before leaving the Onc.

So, if I'm less than scintillating this evening then I suggest that you go and read (or re-read) yesterday's post. Particularly if you're a person of the knit. And, in fact, I'll accept interest from people who aren't of the knit but need a bit of cheering up. Leave me a comment or send me an email (address on my profile page) and tell me why you need cheering up and I'll select 2 additional folk to receive (why, yes, I do like making additional work for myself!) If you're of the knitting persuasion don't feel alarmed - you don't have to knock out 3 grand sweaters to send of - the knitted items can be little things, funny things, anything you can think of really.
So, join the knitty goodness!

De-ported

I am de-ported.....hahahahahhahaha

Not funny?

Anyway, the deed is done; the damn thing is removed and I have a handy dandy portocath-in-a-bag souvenir on my coffee table to enthrall all who come by.... :)
Yes, I am that weird - I've kept my portocath. I managed to engage enough brain to say 'yes' I wanted to keep it whilst sedated.....

But, sedation! That's another jolly story! The surgeon and his shadow came by to consent me at about 8.45 (we'd been there since 7.30 - for why? I have no idea) and said 'you don't really want sedation, do you' in that tone of voice that says 'we don't want to sedate you, say no'. I went all blathery and said words to the efect of 'yes, I jolly well do! You bugger!' And he looked *VERY* put-out. And then made me wait until 11am before they did the actual surgery and then they made me wait around to be discharged and get prescriptions for pain-killers until 4.30pm - at which point the nurse said that they'd gone home and only one dr was around and he was busy and that I could take my own paracetamol or ibuprofen if I wanted to go. Which was what I'd been saying since tea-and-toast at 1.30pm......

Still, a very nice anaesthetist sedated me and put up with me saying outrageous things like 'if this doesn't work and I'm aware of what's going on then I'm coming to find you later'....ahhh, threats - nothing like threatening your medical staff for good service, is there? Still, he was game and replyed that I should do that :) There was also a very nice theatre nurse - Ann-Marie I think, and just made me feel better.

I cried again in recovery - it's either something about coming out of that unconscious state or a side-effect from the anaesthetic stuff that makes me cry. I cried before I was even conscious after the mastectomy and I cried this time. I suppose it was also partly that this was the same place I came round both of the other times and I was crying a bit for some of those too.

Anyway, I'm in one piece, stitches come out a week today - I asked him very nicely to do a super-duper job so I'm hoping the scar won't stretch as much as my other scars..... :( It's uncomfy but not *painful* (hey, nothing's painful after taxotere pain and arm cording!) I've been hiding out and sleeping but back to work tomorrow - at home! I love me some short weeks!

I have a song to sing-o

La, la la la la.....
What do I want to say - hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

I want to say 'thank you!' I had some very nice comments/emails recently which I do love. It's nice to know who all those people I 'see' on my stats are. I've emailed/commented back to some of you but there was at least one Anon with no email address so I can't - so 'thank you'.
I know it's OK to still be finding things difficult but I don't want to be still finding things difficult. I don't *like* difficult - I like to be difficult but I'd rather things weren't difficult for me. Hmmm, karma? And I am talking about all this shit. I do. I am. But it's part of the endless refrain: 'It takes time' - time, ha! Who has time? I don't - I had cancer - I have no time. I'm on borrowed and stolen time. 100 years ago cancer would have killed me; 50 years ago my odds wouldn't have been brilliant; 2 years ago I was lucky; for now I'm holding on with baited breath. Living with NED.

La, la la la la......
Hmmm
It's my birthday on Monday - nowadays, a touchy time of the year since my birthday in 2005 was two days after my first chemo - oooh, nothing says 'happy birthday!' like nausea and sickness! Last year - not so good either. Too busy remembering nausea and sickness. Forget, brain, forget!

La, la la la la.....
I have finally agreed to let the surgeon take out my portacath - I have now had my port accessed to be flushed about three times as many times as it was used for chemo. Perhaps time to let it go, no? Plus I don't want any trouble with it when I'm in Peru in the summer and it'll need some time to heal up and settle down again I should think. I was trying to work out why I'd felt so ambivalent about having it removed when I had such trouble with the idea of having it put in. Mostly it was about not wanting to be cut open again and partly the last time I let them do surgery on me I came away with one breast. Which I knew was going to be the outcome, and I know it was necessary and I know it's probably saved my life - but I don't like it and, irrationally, I blame my surgeon for it. I am really angry with him for mutilating me like this. I am literally half a woman now and it is his fault. So, not feeling good about letting him loose again. I have demanded sedation for the removal which is done with local anaesthetic because I DO NOT want to know what is going on; I do not want to be aware of what is going on otherwise I will shrivel up and squirm and then they will miss and I will end up a mess. Irrational, much? So, this time in three weeks it will be gone - just the wound will remain to fade to join the other scars I've accumulated over the last two years.

La, la la la la la aaallalaalla,
That's a skimming of the top of my brain - there's lots more and I should write it down more often.

Air and share

I read M. Kennedy's 'Pep Talk' earlier today and blithely thought 'I'm not having trouble thinking of things to write' - but now I've sat down to it; actually, I'm not full of ideas.

I've been looking at my stats recently and I am saddened by the number of people who come to my site by searching for information about portacaths. So many of them stop by and read a few pages and then disappear without commenting. And to each one of them I want to be able to say 'I'm so sorry' that you're in a situation where you need a portacath. I don't want people to have to go through the kinds of things I went through andI wish you would say something so I could know something about you - because otherwise my imagination fills in the blanks.

I 'met' another BC blogger today - Laurie - and I flicked through a few pages at the start of her blog when I wasn't working today. And, as so often, reading her diagnosis story reduced me to tears. And I was interested that she, like me, had written a post about what and what not to say to someone with cancer. I suppose it's not that surprising - it is hard to say the right thing and sometimes there isn't a right thing; but.....interesting. As I say to people I meet who've had breast cancer - I wish I didn't have this in common with you; I wish I hadn't met you because I wish that neither of us had had to go through what we have. But we have. And I'm very grateful to Kim for her comments and her insistance that I am a strong person. I find it hard to see that because I'm the one wallowing in my own head; and I am wallowing at the moment, I am overwhelmed by myself and lost in myself. I'll get out of it - I think Elaine's hope is rubbing off on me; I really do believe I will - but I think it's going to take a while.

World's worst

World's worst Zoladex injection this morning. The nurse's hand slipped as she was sticking it in my abdomen and it came out and she had to reinsert it and OW! That flippin' hurt! I think that one's going to be an almighty bruise. I knew it wasn't going to be good when she had to fetch Ivy (Queen of the Chemosuite) to show her how this particular Zoladex injectable worked. Doesn't fill you with confidence, does it?
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)

T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.

I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!

ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....
Horridness

'Nuff complaining?? Perhaps so.

::Whaaa::
::Whinge::

Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.

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.

My first surgery

So, where were we?? Waiting to hear from the admissions office about having the portocath put in.....

I heard from them the following day: Thursday. They telephoned and asked if I could be at the hospital by 4.30pm at a different ward to the one I had been sent to originally. I choked out a 'yes'.

My first sugery - the first cutting into my body - my perfect, mostly unblemished intact skin was going to be invaded, cut, scarred so a foreign, man-made, unnatural object could be put into me. And I was somehow agreeing to this although the thought of having this thing that didn't belong inside my body was making me want to run far away.

I can't quite explain to you the horror of this for me - perhaps if I tell you that I have never had my ears pierced and that I can't write on my hands because I basically feel that my body is a perfect creation that shouldn't be meddled with. The idea that putting holes in myself or putting substances on it that can be absorbed that are not designed to be in contact with your body - it frightens me, it threatens my physical integrity, I can't see why it won't damage me. Can you see what I'm saying? It probably just sounds paranoid - but it's not - it's about my physical integrity, it's about my relationship with my body, it's about feeling whole.

But, I was told this was going to improve the chemotherapy experience, which I felt I couldn't cope with. So, I said 'yes'.

I had to ask what I should bring with me: I had never had to stay in a hospital before. So I packed up overnight gear, a book and gave my mum my mobile phone and we set off for the Royal Free. Once there we made our way to Moore ward which is the cancer ward and, as such, is the most frightening place I've ever been. There are people in there who are obviously very sick, who are probably going to die from their cancer. People who are white and wan and palid, wearing turbans to cover bald heads, lying back with barely the strength to sit up in bed. I wanted to run out again as soon as we arrived but my mum and I made our way to the nurses station and I told them who I was: they looked a bit blank but then someone recognised my name and they showed me to a bed in a four person room. We waited for someone to come and admit me. I sat on the bed, my mum sat on the plastic-covered chair which makes you sweaty. The place was like a sauna but a lot less nice - I was absolutely sweltering and pretty soon, my head began to ache. We sat around for 40 minutes or so and then my mum went off to try and call home to get hold of my dad who hadn't been home when the call from the hospital came and would get back to flat and not know where we were. She came back: no luck and noone had come anywhere near me. Eventually a nurse came by and started filling in some forms about my general health and did I wear glasses or smoke and were my bowels regular: don't you just love medical people.....?

Around this point, my memory goes hazy: I remember my head getting worse and worse, I remember my dad eventually turned up, I remember the woman in the bed next to me had about 5 or 6 visitors whose mobile phones kept going off despite the fact they were supposed to be switched off and they were all talking really loudly and arguing with each other and walking back and forth and in and out of the room. The other people in my room were an older woman who had terrible back pain and was on morphine. I remember her daughter massaging her mothers feet with olive oil. And the fourth woman stayed mostly behind her curtains, she had a visitor but she looked very unwell and uncomfortable.

Eventually visiting hours ended and my parents left.

My parents leaving was terrible: I wasn't going to see them again until after the sugery and they were just leaving me there on my own! I'm sure they didn't want to leave but they couldn't stay. So, I got into my pyjamas and got into my white, crisp bed and tried to read. In the meantime the obnoxious visitors still hadn't left even though it was past time and then the ill-looking woman went into the bathroom and I could hear her throwing up and crying quietly. Finally someone came and ushered out the obnoxious ones and the woman came out of the bathroom and *finally* a doctor turned up to admit me and to take some blood. She was a nice, young, female doctor. She used a tiny gauge needle to take the blood which I barely felt and she asked how I was and I said something like 'don't ask' and she asked me if I want to see a portocath. I very tentatively agreed - I didn't really want to but I'm hopeless at saying 'no' and besides, I thought it might just be one of those things I had to do. She went over to the ill-looking woman behind her curtains and spoke to her and then came back to me and took me over. At this point I was really regreting agreeing - I didn't want to see this woman: I had heard her misery and pain and was scared to see her too closely. But she showed me her port and told me that it was a really good thing, she liked it. It didn't look bad, just a slightly shiny, white scar and not much else. I went back to my bed and tried to sleep.

Part of me thought: I could just walk out of here, walk out of this room, out of this hospital, out into the world and just keep going for evermore. I went and stood at the doorway of the room and took a step into the hall but I didn't leave, I went back to bed.

Meanwhile: noone had told me anything much, I didn't know exactly what time my surgery would be although I think I was early-ish on the list. I hadn't been told to not eat ot drink anything or at what point I should stop eating or drinking. Since I didn't know I didn't have anything, even water, after midnight. I don't know why I didn't ask. Well, I do. Probably because I hardly saw any nursing or medical staff and because I felt totally cowed by them. They were frightening people and I didn't dare to ask questions because I couldn't cope with what I might hear.

In the morning I turned down breakfast and the woman bringing round the breakfast trolley seemed to think this was strange, I sat there unable to concentrate on my book getting more and more anxious. I had nothing to do but sit there and wait - nothing could occupy me enough and I didn't have the concentration to let anything occupy me. I just sat there and tried to breathe. The anaesthetist came round to ask questions - she was kind and agreed that I could have a small cup of water since I hadn't had anything since the previous night. This was great since my head was still bad and I suspect it was due to dehydration. Eventually the oncologist and her team came into my room on their rounds - she saw me there and stopped to speak to me: I have no idea what I said but I was so high on anxiety by then that I probably said 'don't ask' or something sarcastic but whatever I said was enough to indicate that I was in a terrible state: she ordered the nurse to give me some Lorazepam. Trish, my breastcare nurse, asked if I wanted the man who did massage to stop by and I agreed although I hadn't met him and I wasn't sure I wanted to have to meet someone new right this moment but thankfully, I did agree. I changed into that special gown - I had to ask the nurse which way round it went: she acted like I was obviously mentally deficient if I had to ask that question and then Keith turned up. Bless him: I have never met anyone more able to make you feel safe and comfortable and at ease. He was the total antithesis of everyone else in that place at that time - I actually felt that he cared about me and that he recognised how terrified I was and that he realised that it was important to try and help me. That it wasn't just something that happened and was transitory and therefore didn't mean anything. I felt that everyone else just thought that it was normal to feel frightened and that it should just be ignored. Keith saw that I was so frightened it was deconstructing me: I couldn't speak in sentences, I was on the verge of hysterical tears; I was in total 'fight or flight' mode and since I couldn't do either of those things I was actually falling apart, deconstructing, losing myself. I was in some primitive place where feelings ruled and logic didn't exist. I couldn't reassure myself because I had no ability to see that this would end, would pass. I was swallowed by it. And somehow, somewhere, Keith recognised this and acted. He massaged my feet and legs which was lovely and chatted to me and distracted me and reassured me. He probably doesn't even remember this day but it is etched on my memory because it was such an act of personal kindness from someone I had never met before.

Then the porter arrived to take me down to the theatre. A rather different theatre to the one I was used to performing in! One of the nurses came down with me and my chart. We went down in an elevator and emerged on the theatre level: it was really cold down there and it looked a bit like a warehouse with corridors: lots of trolleys of things and stuff piled up. And I was wheeled into a little room with a couple of theatre nurses in. They started to get me ready and I asked one of them what was going to happen, she seemed surprised at my question. Why should this be surprising?? Why wouldn't I want to know what the proceedure was going to be?? It seemed like every time I asked a question it was met with the attitude that I must be mentally slow if I had to ask this - like I was supposed to know how everything worked, the procedures, the culture already. But I didn't - how was I supposed to know this?? And why I should I be made to feel that I am stupid because I don't know?
The anaesthetist turned up and she put a cannula in my wrist and injected something into it and then,

.....nothing.....

I started to be aware of noise and people talking around me. I was sort of half lying, half sitting - propped up in a way. I felt floppy, weak and sick. Someone noticed I was coming round and she asked me how I was and I told her I felt sick, she injected something into the IV line, my shoulder area was hurting and she brought me some soluble paracetamol and a straw and I gradually managed to drink it. It's funny really - because I have quite clear aural memories of the recovery room; of hearing people talking around me but hardly any visual memories. I'm not really sure what the room looked like or what the nurse looked like; although I know her name: Cherry. I asked her who she was - I hate not knowing who people are or what's going on.

Once I was feeling a bit better and was more alert I was taken back to the ward and left to sleep off the rest of the anaesthetic which I did for a while until the woman with the obnoxious family had about 6 friends from her school-days turn up to visit her - and they started shrieking and 'oohing' and rattling on at a mile a minute. Now my head felt as if the world was cotton-wool around me, things were hazy and tender and all this noise was terrible. Some of the other people in the room were very kind and asked the group to quieten down - pointing out that I'd just returned from surgery but it didn't really make a lot of difference. Nurses came and asked them to be a little quieter and finally the ward manager came and told them that they had to leave; that it wasn't fair to other patients and he offered them another room to go to. Now, since I'd come back from the recovery room the curtains around my bed and been partially closed - so I could see out a little but was mostly enclosed. As these women started to leave 2 of them came into my little area and started asking me if I minded them being there, if they were making too much noise. I was so *British* - I should have said 'you are totally inconsiderate people, I would like you to leave, I am not feeling well and you are disturbing me' but of course, I just mumbled and said something noncommital. Even now, I cannot help but seethe when I think about these two women: I feel like they not only were inconsiderate but they invaded my personal space at a time when I was unable to adequately respond or stick up for myself. Thankfully the ward manager did send them away - I don't know his name but I am so grateful to him for that.

During this time that I was recovering the nurses told me that my parents had rung to ask about me and that they'd told them not to come until later when I was more awake: I was so mad about that and again, I did not say anything, but I wanted my parents there *then* - I wanted to know that even though I wasn't very alert that they were there and then they would have looked out for me and they would have told those horrid people to be quiet. And they would have come and sat with me if I'd been able to tell them I wanted them; if they hadn't been told by that nurse not to come. I wanted my parents. Eventually, they turned up and the doctors came by and asked if I wanted to go home to which I responded in double-quick time 'yes!' I couldn't stand even thinking about another night in there so they started to arrange my discharge.

When my parents arrived the nurses disconnected me from the drip I'd been on and my mum helped me up so I could use the toilet. I'd wanted to go for hours but I'd been so cowed by all those people and I'd felt so lost and alone that I hadn't dared to ask anyone to help me get up. I could hardly move myself from a lying to a sitting position because my shoulder was so stiff: it was impossible to sit up without using those upper chest muscles to initiate the movement. Next, my mum helped me to get dressed and I realised at that point that I couldn't get back into the top I'd been wearing when I came in - it pulled over my head and was quite fitted so I just had to put on my fleece zipper top. Even putting my left arm into my sleeve was really hard and uncomfortable. It was a little odd at this time because the woman in the next bed had come back with one friend and they were obviously Jewish and it was Friday night: Shabbat. So her friend had brought in the special meal and they were singing quietly to themselves. A sort of peculiar juxtaposition - not an experience you expect to share in a hospital. But definitely an improvement on earlier. The exertion of getting up and dressed made me go all dizzy and I suddenly felt this wave of nausea wash over me: I had to lie back down for a few minutes. But I was determined to get home that night and nothing was going to keep me here any longer: I hated it, I was frightened, in pain, lost, overwhelmed, I'd consistently been made to feel stupid because I didn't know what to expect: because I didn't know what hospital routines were, since I didn't know what happened when I had surgery, or how to wear a gown; I wanted to go home.

I WAS GOING HOME.

The nurse came and said I could go and she brought me some painkillers: paracetamol and codeine and some anti-sickness medication: cyclizine to take home and some dressing kits and said that we should change the dressing every couple of days and that the stitches should come out in 7 to 10 days. My dad fetched a wheelchair and called a cab and we went home.

The cab home was agonising - every time we went over a speed bump it jolted my whole shoulder and a stab of pain went through me. I felt so fragile and broken. When we reached home it was dark, my parents helped me up the steps to my flat. One of my neighbours: Kissime, came out to see what was happening - I think she must have been totally alarmed because I was as white as a sheet, shuffling along the walkway, with obvious stitches at my neck. I hadn't told her what was happening and I didn't then either. I couldn't bear to have my neighbours being nice and offering to help and things like that. Too proud for my own good.

So I got home: my mum lent me her pyjamas because I didn't have any that buttoned down the front and I couldn't get into anything that pulled over my head. They were too short in the legs and the arms for me. I got into bed, I was propped up on a pile of pillows so that I didn't have so far to sit up if I wanted to get up. I was so relieved to be at home, in my own bed - I slept.

Panic

Scared this morning - I've been feeling discomfort in the left chest/breast - I think it's the portocath but I felt it this morning and it felt sort of hard. I didn't investigate too closely - I'm a scaredy-cat.

I just keep reminding myself that the Oncologist said that the chemotherapy would be stopping the cancer from spreading and growing anywhere else, as well as shrinking the existing tumor. And she's a big shot in her world - so she knows what she's talking about.
I wish the Surgeon had decided to take the portocath out though - I hate having foreign objects in my body - even if it did make the chemotherapy easier.

I don't know whether to panic and call Trish. I hate this. I so cannot cope with the fear and uncertainty, I mean, the rest of it is pretty shit too - but I really, really go into panic/worry mode when I'm not in control (and that includes knowledge).

I think it's probably being on my own in the flat for only the second time since February - nothing to take my mind off things - too much time to brood. Well, my dad gets back tonight on his way to the airport and then I'll be heading to Northampton tomorrow and off to see friends in Leeds on Thursday.

::tears::

I feel like I'll never stop crying.