Carry On Nursing Part 14

I love nurses, absolutely love them.

They aren't the backbone of the NHS they are the NHS as far as I'm concerned. Most of them anyway because life always allows for exceptions but this post is mainly about the good ones, the funny ones, the ones with a glint in their eyes, best sense of humour and no nonsense attitude, the ones who put up with so much and keep smiling, keep caring, keep nursing. This is especially for the ones who for me personally, have made this whole ordeal more than bearable.

Until seven months ago I had very little contact with nurses, my dealings with the medical profession were a few consultants and my own doctor. Nurses didn't really feature for me, I mean I knew they did a good job, I read about the fact they were underpaid, I knew they wore uniforms and had a sexy reputation (unfounded as far as I know) in lots of 1970's films. I also knew that it was a career / vocation I could never contemplate because I am just not made that way, but thank heavens they are.

Fast forward to today and frankly if I don't have some sort of daily contact with one I feel almost bereft. I have met a variety pack, young and old, those starting out and those with almost too much experience. Yes there are nurses who wear with pride the been there seen it all done it all t.shirts, I had the dubious pleasure of meeting a Frank Carson style male nurse who proudly told me he should have retired a year ago but would miss it too much, set firmly in his ways he wasn't going to follow 'new fangled' ideas and as long as he made his patients laugh he was staying where he was. My heart went out to his bosses...

Despite some really awful times when I just couldn't cope they have been insightful, practical and humorous but above all else they cared, really cared and that shines brighter than any PHD in medical science, especially when all you want and need is reassurance and a twinkly eye.

I had heard about the MacMillan nurses, I knew how good they were but I hadn't realise that from your first appointment for a biopsy / scan you are 'given' a dedicated nurse. I struck lucky, my cancer nurse and I hit it off from the word go, I must admit I found it quite uncomfortable to say the words 'my cancer nurse' but in effect that was what she was, and she has been there for me the whole time. From the first appointment, she understood I didn't want or need flannel, I just wanted to be told the truth. She also realised I needed a healthy dose of black humour or I would not be able to cope with what was happening and she provided buckets of it. From the first consultation, she held my hand (metaphorically speaking as I don't go for that kind of gushy stuff although I make exceptions for a hug) and when she saw how lost I was by consultant speak she would throw me a wink or give me a knowing smile and then follow it up with a phone call or an email to make sure I knew what was going on.

She was there at the operation for the lumpectomy, making me laugh before I went in and reassuring me, always always reassuring me. She was like a guardian angel, if angels have lovely skin which I'm sure they do. She certainly does. When I was admitted for Neutropenic shock at Christmas she paid me an unexpected visit. Popping her head round the door she looked at me lying in the hospital bed and very sternly said "Just what do you think you are doing in here?" her eyes betraying her humour. I was so touched that she had come to see me and very much in need of some sort of maternal hug that in that particular moment when all my hair was falling out and I was feeling so let down by my body and ill I just cried. She sat with me while I snivelled out an apology for crying and being pathetic and I let her hold my hand while she talked practicalities and made me laugh again. Her timing once again was impeccable, showing up exactly when I needed her, doing exactly what I needed to make me feel better without me even realising it. Throughout my chemotherapy she would either call or email me depending on when she believed I was feeling better. She always always seemed to know when I would be too ill to talk or be just about able to respond to an email. A priceless skill as far as I'm concerned.

They don't tell you about that when discussing the NHS and it's failings.

I have different sets of nurses I come into regular contact with, there were the nurses I saw on a weekly basis to change the dressing and flush out my detested Picc line. When I was too sick to move they came to see me, no questions asked just part of their job to include me on their already busy rounds. Most of the time I managed to visit their clinic and one appointment I particularly remember there was a lovely Spanish nurse on duty. I was having a bad day, a really bad day, I didn't realise at the time that I was anaemic, I felt washed out, tired and depressed and annoyed with myself for not coping better. I was desperately waiting for the 'good days' to start after chemotherapy. Within thirty seconds of walking in to her clinic and being asked how I was I started crying, it certainly took me by surprise but it didn't faze Miss Spain who sat me down, didn't take my tears personally and gently told me off for not being kinder to myself. Spending time talking through stuff and making me laugh she did so much more than just change a dressing that day and it's a small measure of how wonderful she was that I hugged her as I left.

They had a lot to put up with at that tiny little seaside clinic as they received lots of flack from those at the big hospital...not face to face obviously, office politics are alive and thriving even in the nursing profession. No, this was done in a snide manner huffing and puffing to patients in for blood tests that the picc lines weren't correct according to the photographs in the manuals. Well I for one am eternally grateful to those lovely nurses who did it slightly differently because when all you want to do is tear out the tap attached to your arm they did their best to position it comfortably, and Moon Face and his associates can take a running jump with their 'how to' manuals.

Talking of Moon Face, there was a nurse (male) who worked alongside him in the chemo unit, I wasn't quite so sure of this one, from the very first time I met him he was like the song from Sesame Street, 'One of these nurses is not like the others, one of these nurses is not quite the same' I think he was a part of the picc line team and he may have been more senior than some of the other wonderful chemo nurses who went about their business quietly and kindly, but I'm not convinced. He had less of an air of authority and more an air of superiority, not quite the same thing, more David Brent than Florence Nightingale... he did unknowingly add a certain unexpected comedic value to chemo but I made it clear I was distinctly unimpressed when he tried to disparage the community nurses from my area, and not finding an ally he kept his distance.

Community nurses are terrific unsung heroines, pootling around the countryside like industrious bees they spend time with their patients who need them more than we would like to admit. I have my favourite, I'm not ashamed to admit it, right from the moment she walked up the stairs to our flat I adored Sparkly Mc.Gee, the affection seemed to be mutual and pretty much instantaneous as was a wicked sense of humour and a dirty laugh. She was good, she was very good, I plied her with home made brownies and banana cake because she made me feel better just by being here. In exchange she taught me how to do my own daily stomach injections and cured the ulcer on the inside of my leg with her magic plasters and no nonsense advice.So much for what that doctor told me about chemotherapy stopping it from healing, he obviously underestimated the power of nurses....And whereas the others I have come across will always be wonderful and colourful characters in a play where I was a just a passing protaganist, Sparkly will become a good friend because I now have her number and if she doesn't keep in touch then I will hunt her down.

Every cloud and all that.

Finally the unqualified nurses, the ones who came and sat with me during chemo, bringing mints and magazines and holding my sweaty hands and drooping head as I went through the general misery that is that treatment. They kept me sane, put up with my incoherent ramblings and increasingly grey face, they made me feel less of a burden and just plain loved. 

Lucky me.

Who Loves Ya Baby? Part 13

If I go out I spend my time staring at the cracks in the pavement, I tend to keep my head down...it's easier, because people either stare at me or they pretend they haven't, if I look down then I can't see them noticing there is something different.

I'm not sure who I feel sorrier for, me or them...

I've now lost my eyelashes, not strictly true, I haven't lost them, I wouldn't be quite that careless. They have gradually fallen out, the realisation hit me one day when attempting to put mascara on the wand kept hitting my eye-lid instead, what a muppet. It took several goes before I came to the conclusion the reason I was making such a mess was not due to my bad eyesight, it was because there was no longer anything to put mascara on. That item of make up  has now been relegated to the box of useless-for-the-moment-items together with my shampoo, conditioner, straighteners, grips and hairbands.

My eyebrows are practically non-existent although I can pencil those in, trouble is I don't always do it very well and there's a dilemma, because once bodged I can't then scrub off the offending brows, just in case I rub off the remaining hairs. Life has become very complicated. The real problem I have now is that I have that look...the 'cancer' look. You know it, you've seen it a hundred times and when faced with it you didn't know where to look either, now I have it and aside from a few very close friends and my family who can still see the real me despite my anonymous face, I avoid people and don't tend to venture very far unless I absolutely have to.

I have been out, needs must and all that, and sometimes I do feel brave enough to deal with the looks and the stares. In the car I whip off my beanie if it's too warm and watch the reactions of those driving past, sitting in traffic has been a real test which sometimes I can do and more often than not I can't. People can't help staring, I must look quite odd, I was in the hospital car park recently, hatless, driving slowly around looking for a space and I watched as people did a double take and then studied the space above my head. It makes me feel like the biggest freak in the world and I try not to let it get me down but sometimes it just does.

I have friends who tell me I should care less and I do wish I could, I'm just not very good at it. I don't like not wanting to go out, I don't want to hide away, I would like to feel confident about who I am and what I'm going through but it is quite hard to do when it's just me, or so it seems, which brings me on to something which has really puzzled me. Just where are the rest of them? Where are all the women who are going through chemotherapy? Are they all hiding at home because it's easier than dealing with the discomfort felt by others? Should I start an out and proud group for baldy females so they / we feel a bit more relaxed about being in public. If this awful disease is so common and loads of poor women are going through the same treatment, then surely there needs to be an advice manual given to the public of what to do and how to react when they have a baldy in their midst.

I have been very lucky, it's been really cold so I have managed to keep my head covered with a beanie. I'm rubbish at wearing head scarves and they are a bit obvious, wrap a scarf around your head and you may think you are channeling a film star from the forties but you are kidding yourself, that look screams cancer /treatment and chemo all at once. My wig was fine to start although it was so itchy I gave up on it, now I've lost all facial hair it looks terrible, like a bloke wearing the wrong colour toupee, so my choices are somewhat limited, and with the onset of warmer weather I can feel a totally reclusive moment coming on, 'I vont to be alone' only I don't...not really.

I have been to restaurants and coffee shops with friends and buoyed up with their words of love and encouragement I have even felt courageous enough to take my beanie off, it is shocking to see and I really am sorry if I made anyone feel uncomfortable. Kids stared, and that was fine and expected, they stopped after fierce stares from their parents. It was liberating for me and once I had stopped blushing, it felt great. I am not unsympathetic though, I have wondered how I reacted, before all of this and the fact is it is very difficult, knowing what to do for the best.
I was in a supermarket with The Boyfriend a couple of weeks ago and he nudged me and pointed out this lady who had walked past us, "Like you" he whispered and smiled at me. I whipped round and saw her, she was wearing a turban hat and had painted eyebrows, I cannot explain how I felt when I saw her but it was sort of lovely, I didn't feel quite so alone, there was another one just like me and for a split second I really wanted to rush past all the regular shoppers and go up and hug her. Deciding that she would probably call security I left it, but I definitely felt better for having seen her out.

If you would like to know what I think you should do when you see someone who you believe may be going through chemotherapy I can only say what I would like. Go ahead and look at me,  and then smile at me please, because your smile will make me feel a million times better and in that split second I will pretend that all is normal and you can see me, just me.

Fizzlesticks Part 12

This chapter was going to be called 'Rude Awakenings' all about how I had become very positive and virtually spiritual about what was happening to me, I was tired of feeling sick and weak and I was ready to tackle each treatment head on and not allow it to bring me down, or beat me or even stop me from living as normal a life as possible. Not only was I going to beat this I was going to do it singing dancing and laughing.

Then I had treatment number four and any notion of a new life affirming attitude was kicked into touch.

Back in December when I was last in the school where I teach the children had been told in assembly that I would not be taking their classes for a while and why. Later that day one of the children from my class who is 13 going on 28 came up to me to tell me that if I ever needed someone to talk to she would be there for me. It turns out that Little Miss Wisebeyondheryears had herself gone through cancer at an appallingly young age, as a result she was blind in one eye and knew all about hair loss, sickness and indeed chemotherapy. She was a treasure, a straight talking empathetic treasure. This conversation was the week before my first chemo and I remember asking her if she thought I would be able to make it into the school fair the Saturday after. She shook her head emphatically 'No way!' she said, 'not a chance'.

Feeling that here was someone who would tell it like it is I asked if I really was going to feel that bad. She looked at me quizzically (probably weighing up whether or not I was strong enough to hear the truth) and said unequivocally:

"Yeah, it's pretty bad, but nowhere near as bad as how you are going to feel at the last one" and she smiled her beautiful smile and went on her way. Out of the mouths of babes...

In a world of highbrow medical professionals who seemingly prefer their neutral non-committal vantage point from the proverbial fence, this child's blunt opinionated words were like a breath of fresh air. I quickly became used to the fact that it was rare for anyone to say for definite what the effects would be, or even how long they would last but to hear someone answer a question clearly and be straight down the line about it, well it didn't just make a refreshing change to hear, it also helped me to prepare for what was coming. I shall tell her as much when I next see her in the classroom.

She was right too, absolutely spot on, it does become progressively worse, the symptoms, the physical effects, the psychological impact, everything. What doesn't break you makes you stronger right? Wrong...it actually makes you very upset and angry. Anger isn't good for my condition...apparently I should be calm and zen like, well in that case they need to pass that message on to the oncologists. I have oncologist envy, anyone who says they travel miles to see their specialist because they have so much trust and respect for them is met with a speechless stare from me. I have seen three so far, three very different ones, all very lovely in their own ways I'm sure...maybe... but all of them managing to deplete me of any sort of faith in a system which should know who I am pretty much inside out from my medical history and what I have already been through. Or am I asking too much?

Two days before each chemotherapy I have an appointment to see the oncologist, I also have my blood tests and my picc line flushed and changed. Honestly, never a dull moment. After the fourth one The Boyfriend and I were more concerned than usual because I hadn't had a good week, in fact I had barely had any good days. Normally the week before chemo I feel stronger, not quite normal as I can't remember that feeling but near enough. The symptoms this time had been abysmal, so together we made a list, I figured the more details the oncologist had about what I was going through the better he / she would be equipped to help.

I should have added seriously delusional...

The general consensus is that chemo leaves you feeling sick and tired, it does indeed, but as your body slowly breaks down (at least that is what it feels like) it offers up a whole host of other side effects, that in itself is a misnomer, side effects, they aren't on the side at all, they are served up as all encompassing main dishes. You have the ones you expect, or the ones you are told about such as the sickness, sheer exhaustion, your skin drying out, actually everything starts to dry out but you might be eating your tea so we won't go there. They also warn you that you may experience mouth ulcers, or as I know them tiny blisters on the roof of my mouth which grow overnight. However, some of the effects came as completely horrible surprises, and it was these I had on the list in my dry little hands as I waited to see the oncologist.

Enter centre stage Pretty Boy. Yes that is what I shall call him, early thirties, tall, mixed race, good looking, same hair as me, or lack of it, eyelashes I would kill for, a high bum, floral fitted shirt and bad slip on shoes. Well, something had to give. He thought he was something else, charm personified, he greeted me with a smooth 'Hello Martina, we have met before please sit down, how are you?'.

Indeed we had, the last time I was here, surprised I was meeting yet another oncologist I had found his 'charm' slightly nauseating  (and let's face it I am a bit of an expert on nausea at the moment) but I gave him the benefit of the doubt and he gave me sick pills with a sedative which helped me sleep. I thought he'd be impressed with my list, I felt like I had done my homework.

I started to read through the list, explain about the breathlessness:

"I have to literally stop for about 10 seconds mid conversation before I can speak, it's quite scary" I told him.

Not a word, he just looked at me.

"You know" I continued "Not able to talk, a bit like Gareth Gates syndrome" I said, trying to make a feeble joke.

Nb, do not joke with the medical profession, and certainly not about a former Pop Idol with a stammer, he probably wasn't even born then. No response, cue tumbleweed. He just kept looking at me, as if I had the answer, or I needed to say more.

"You do want to know about these don't you?" I asked, feeling slightly stupid with my postcard of maladies "I thought it would help if I made a list."

He smiled at me and nodded, and wrote something down but I wasn't convinced. He then suggested we listen to my chest, which we did. He checked my blood test results on his computer and it transpired I was anaemic, dangerously so. Right, that would explain the shortness of breath, chemo taking out all of my red blood cells like an almighty kung fu kick and the oxygen then struggling to move around my body, no wonder I couldn't breathe, oxygen being relatively vital to do that. I love a scientific explanation. No problem...

"I'll grab a fillet steak on the way" I said. Somewhat naively.
"No, that won't make any difference, you need a blood transfusion" He said making more notes.
"I can't, I have chemotherapy the day after tomorrow, fifth round, I am not delaying that"
"Oh" He said, raising his eyebrows (lucky bastard) "You still want to go ahead"

What???

With that simple little question he sowed seeds of doubt in my head which were to rear up again and again.

"Why would I not go ahead?" I asked, utterly gobsmacked.
"Due to the severity of the symptoms you are experiencing I thought you may have second thoughts" he said, "In light of the fact that you would like to continue I will see about a blood transfusion"

It's hard to explain this, I have managed to do four lots of chemo, my brain and willpower have been entirely focused on getting through all six, it is getting worse, without a doubt, but it's something I have to do, at least I thought I did. I'm going to park that for now, let's go back to the list.

Fizzing...I hate this one.You know that sensation when you were younger and dive bombed into the pool and the water shot up your nasal passage and gave you bad sinus pains? Imagine that but with chemicals instead of water. That's fizzing, I explained all this to Pretty Boy who managed to say this:

"That's funny, I have never heard of that one"

Funny? Funny? What part of that is ..... funny?? Insert your own swear words, I can't because my Dad reads this.

He then looked at the MacMillan cancer website to see if he could find any notes on fizzing there, it beggared belief, I pressed on, I couldn't bear much more of this but I had a list dammit.

"I've been feeling very down, teary, almost depressed" I said, "I'm not really like that and it's worrying just how low I've been feeling" I carried on through the pause before the tumbleweed hit me

"I'm guessing that's another side effect though".

Brace yourselves....

"Are you self harming?" he asked.

Really? Seriously? Self Harming? I wish I had the presence of mind to have given him a smart answer back, such as 'I think the NHS has that covered' which a lovely friend said to me later that day adding a few choice words of her own, but then it would have gone over his tick boxing head anyway. The only other thing I could tell him about were the spikes in temperature I had been experiencing, suddenly becoming very hot indeed. He leaned back in his chair and had a brief look at my notes on screen.

"That'll be the onset of the menopause" he said, "Chemo does that, brings it on, and you're the right age".

Never mind self harming, if I hadn't been so breathless I would have taken him by the scruff of his floral shirt and lifted him right out of his bad shoes.

You taking the Picc? Part 11

These are my new best food friends following each chemotherapy treatment:

Calippo ice lollies - Genius for taking away the metallic taste.
Carrs Crackers with butter and salt - When nothing else appeals.
Ginger Lemon and Tumeric Tea - It does good, tumeric is brilliant for infections apparently, and it tastes great and makes a change from water.
Roast Chicken with everything - I have to control myself over this, I'd eat it every day if I could. Was never a fan before all of this - weird.

I have also taken to rubbing ice cubes across my face every morning, I read it in a Sunday supplement magazine, some supermodel recommended it as a technique for keeping your skin young and I will freely admit to being taken in by any beauty tip which costs nothing and is fairly painless, the irony of those keen on youth through botox is not lost on me...inject yourself with poison to look better. Seriously?
I'm not saying the ice cubes are helping much but I have to say that much to my surprise I am, four treatments later, still with my eyebrows clinging on and pretty fresh looking skin. Even my oncologist said so, not that I trust her particularly but a compliment is a compliment. Mind you, I am now worried that because I have actually published this bit about the eyebrows I have jinxed it and they will start to fall out, I hope not, my eyelashes have all but disappeared so my eyebrows are all that's keeping me looking vaguely feminine.

I am digressing, I need to go back a bit, to when they told me I would need a picc line fitted. As you may remember me mentioning that my veins had all dried up after the first chemo, and not even a giant ice cube would bring them back to life, so as I had been advised at my first treatment I should really have a picc line fitted. 'It will make your life so much easier' they said. 'No more needles' they said. 'Very easy to do and maintain' they said, 'like a tap in your arm' although to be honest they had me at 'no more needles'...

In between an amazing Christmas (never been spoilt like it) and looking forward to a quiet new year before all the treatments started up again, I was booked in for an appointment to have this thing done. It did not even occur to me that it would be anything more complicated than the equivalent of having a blood test. You really would think that by now I would look these things up so I was fully versed in what was going to happen, but I much prefer the idea of burying my head in the sand as a good avoidance tactic until faced with the inevitable medical drama. That cold December day I dragged a Swedish friend along for the ride confident we would be in and out within the hour, convincing both of us that it would be easy and straightforward. So imagine my surprise when we walked into the room and we were shown a room and I was told to lie on the bed.

"Really? On the bed?" I asked, "Could I not just sit on the chair?"

The lovely nurse with her hair in Heidi plaits seemed quite sure I would need to lie down, for the local anaesthetic.

"I need an anaesthetic?" I asked incredulously. I do like to test everyone in the NHS, I'm sure they must think I'm a total pain in the backside but each time I am faced with some sort of new intrusive medical procedure I feel I should just check that it is definitely necessary.

"Yes", she replied, "When they told you about this did they not give you a manual describing what would happen?"

"Well yes, yes they did" I said, feeling my face burning up, regressing to a ten year old version of myself facing a teacher with missing homework. "I may not have read it, is all" I mumbled and climbed onto the bed.

"Well, what we are doing today is cutting a hole in your arm and the picc line is then inserted, the tube follows a track across your chest and hangs above your heart, making it much easier to administer the chemo." She explained smiling at me...."Then you will have an x ray to make sure it is in the right place and then we will give you a dressing and more instructions on how to look after it as it will need to be flushed out every week."

Crikey.

Here we go again, I had so much stuff given to me after the last session such as meds, prescriptions, Heat Card, pamphlets and so many instructions on what to do and where to go and who to call, that when they told me having a Pic Line put in would be easy, I believed them. I didn't for one second think I should study the booklet. Turns out I was wrong, I should have taken an extra curricular exam on Pic Lines, their insertion and their sodding maintenance because life was, quite simply, not going to be quite the same again for several months.

I have wondered about telling you this because people are beginning to think I am having an exceptionally rough ride, I'm not at all, okay there have been a few occasions things haven't gone swimmingly but I'm alright really, I just happen to be writing it all down and half the time it's my own lack of research or paying attention which leads me into these situations. I should know better but it's a huge learning curve and hopefully if anyone else is unfortunate enough to have to go through something similar they are at least prepared from my experiences, or at least they know to gen up on it.

You're welcome.

There I am, on the bed while Heidi covers everything up on my right arm with a sheet so I can't see what's happening (probably better) and then tries to find a vein... yeah, good luck with that. Meanwhile my Swedish friend, who I thought looked close to tears at my suffering and pain, actually stands up and moves closer to have a better look at proceedings.

"It's quite full on, isn't it?" I say to the nurse, "Not quite as run of the mill as I had thought, more of a mini-operation" I said, although I am hoping she is going to correct me and tell me it is a walk in the park.

"Yes" she replied, "Pretty full on and after this you need to go up to have an x ray to make sure it's in the right place and then we need to put your dressing on" and then she added, "but it IS going to make things so much easier for you".

I nodded obediently but I wanted to scream 'WHEN? and HOW?' Then there followed lots of digging around, and I could feel a liquid sensation, so I asked her:

"Gosh" I said, "It's bleeding quite a lot isn't it?"

"Can you feel something?" She asked looking around quite panicked, "You shouldn't be able to feel anything".

"I can't feel any pain but something is definitely pooling in my armpit, I'm taking an educated guess that it's blood" I said.

"All completely normal" she said, in a voice slightly higher than normal, even my lovely Swedish friend sat back down in her chair.

The x-ray showed up the fact that it had gone in a little too far so it needed to be pulled back between 4-6cm. It's a bit like when the string from a bikini top disappears into the lining after a spin in the washing machine and it then has to be dragged back out using a safety pin or something similar. Not quite the same technique but the same problem... It's easier using metaphors like that because then I can pretend it's not happening somewhere inside my chest.

It was realigned by someone I shall always refer to as Moonface, a large fellow with a very large and very round face, I know this because he worked on my arm and was very very close to me so I was able to appreciate the size of it. He was definitely a picc line expert, he took his work very very seriously (which is good) but his face to face interaction with a patient less so (not so good) so I was treated to degree level technical information about peripherally inserted central catheter (Piccs) while he did the dressing and bearing in mind he was inches from my face he did not once look directly at me but spoke directly to my upper right arm.

My picc line will have to be flushed once a week by community nurses in a place which is about a 40 minute drive from me,  and the dressing will need to be changed. I have a red booklet for the nurses down there which Moonface made a big song and dance about keeping it up to date, but at the time I was being a good patient and regardless of whether he bothered to look at me he was taking it all very seriously. There would be trouble ahead in the upkeep of my Picc line and I would be very much caught up in the middle of it, a bit like office politics or a medical version of he said / she said, but I had no idea then, that was all to come. Never a dull moment.

I went back home absolutely wiped out by the whole day. It didn't exactly hurt but it did ache, I could feel it that first night, a new foreign body sitting across my chest. It is staying there for at least three months, I can put up with most stuff and I accept what is happening to me, I know it is not the worse thing in the world, I know in fact it could be much worse but this thing, this bandaged up tap on my right arm, this thing I really hate. I can feel it all the time, it affects the way I dress, the way I shower (I need to wear a rubber sleeve) and sleeping is a worry. I know all the good it does, but I am not making friends with it and I am counting the days till it is removed...currently at the time of writing this I have about forty days left.

Definitely something to smile about.

Night Nurse on Elm Street - Part 10

Daytime television is rubbish.

You would think that given no choice, and having to lie in bed not able to go anywhere or do anything then having a television in my hospital room would be fantastic, it really isn't. There are only so many property, antique and cooking programmes you can watch before your brain is freeze dried. Not to mention the gladiatorial monstrosity that is the Jeremy Kyle Show, how on earth is that man still on television? He's like an insincere Spitting Image puppet with a microphone and a license to patronise.


It's the second day in hospital and I'm feeling so much better, I know I'm not going home yet although I keep testing them, apparently they are sure, I'm in for a third night, and then it will depend on whether my blood tests show a huge improvement in my white blood cell count. I can deal with this because I am definitely feeling brighter, the nurses are making me laugh and my hair is fixed into place until I can do something about it at home. Good job too that I have so many lovely visitors coming in to cheer me up and keep me smiling. One friend who felt as if she may have a cold coming but was unwilling to let me down came to see me anyway to wave through the window and leave me some magazines, fabulous and really appreciated. I'm allowed magazines, I'm not allowed grapes, blueberries or anything which can't be peeled (risk of infection...I'm not even joking) now I know The Boyfriend is good but even he draws the line at peeling grapes for me.

Another day and another stomach injection, but that wasn't phasing me today, a splendid friend was coming, she had given up her day off to spend it with me in my hospital bubble and I couldn't wait to see her. She's one of those friends who totally throws herself into every new situation with absolute gusto so when she arrived in the ward to see me she took it all very seriously, acting like an extra from Casualty she adopted an immediate sense of self importance by walking around wearing a plastic apron and latex gloves, smoothing down the apron and pulling on the tips of the gloves. It was the laugh I desperately needed and I responded by scratching the back of my head and pulling out a chunk of hair...much to her horror.

Aaaahhhh....good times.

I continued with this general feeling of good humour when The Boyfriend came in to visit. I taught him the no-teeth-name-game, if you have never played it I thoroughly recommend it, seriously it is brilliantly funny. We fell about laughing, I didn't literally fall because I was attached to a drip, but I never let a small thing like a medical reality get in the way of having a good time and we were in hysterics when my favourite junior doctor came in, we told him about the game but his professionalism stopped him joining in although I have a feeling he really wanted to have a go.

We discussed my symptoms and although my throat was better I had been experiencing severe shooting pains up the back of my head, and no, not because I was pulling my hair out, I only did that once. The doctor thought that the pains were down to the infection I had, it was probably in my ear, he promised that the liquid paracetamol would soon be arriving on the drugs trolley and that would help. So a good day all round, the doctor left, The Boyfriend left, I ate my dinner and lay down waiting for my meds so I could sleep.

The severity of the shooting pain was definitely worsening, I tried to settle but couldn't, whichever way I lay it hurt, badly. I called the nurse to see when the meds were arriving. She came in, switched off the call button and reassured me that they were on their way.

"It really hurts" I said, pressing down that side my head trying to subdue the sharp throb I could feel.

"I know and I can't do anything but I promise they are doing the rounds" she said, and left me to my headache.

Three hours later and I was still waiting, I had used the call button a couple more times but the poor nurse could do nothing, they had to wait for those qualified to give medication before anything could be done. It was now so bad that I could not do anything except walk around the room holding onto the side of my head trying to squash it and make it stop. It didn't work. By now I was in tears, it was almost six hours since the junior doctor had told me the meds were on their way, I was in agony.
Someone must have heard me crying, I opened up my blind and looked out onto the reception area, I must have looked a state, distressed teary face, sticky-up hair, my hand clamped to the side of my face.  I was, to put it mildly, going slightly mad with the pain.

Within ten minutes a different male nurse came in to the room. No apology no explanation just a very abrupt 'Can you sit on the bed please?' I went to lie on the bed and I asked if he was going to give me liquid paracetamol, he didn't reply. I asked again because I was desperate for the painkiller, I knew the other medicine would be the antibiotics to fight the infection but it was the liquid paracetamol which would help the pain and I needed it, actually I had needed it six hours ago.

Obviously aggrieved at being questioned, he looked at me and said "I tell you what, do you want to check the sheet and see what medicine you should be having, then you can tell me what I need to give you" He then shoved the form towards my face.

"I just need the liquid paracetamol" I replied, but I was pretty shocked.

He grabbed my hand so he could put the drip into the cannula, he adjusted the reading light above my bed to see better. Thinking it would be better if he put the overhead light on I asked if he wanted the light on, the truth was my poor arm had really been through it and I was afraid the cannula would come out or even worse the painkillers wouldn't go in. He didn't like that.

"I CAN SEE what I'm doing" he almost yelled at me. "I can see." he said and carried on.

I was now too scared to say much else, he adjusted the drip and I then remembered the other drug.

"How long will this take?" I asked.

"About ten minutes" He replied, then, as if he read my mind about the second drip he continued almost smirking, "To change that one and put the antibiotics in you will just have to call someone else." He walked out and he didn't wash his hands then either. Rude, scary and unhygenic...

I fell asleep immediately through sheer exhaustion, but an hour later the nurse who had been to see me previously came in and the door made a squeaking noise as she walked in and woke me up, I sat bolt upright in bed and was shaking, I was really terrified he was back in the room again. She calmed me down and checked the drip, it had fallen out, no surprise there then. She put it back in and I made her promise me that he would not be coming back, she apologised over and over again that the meds had taken so long, she had thought they had been given to me hours before.

I don't want to bang on about this, one bad experience does not make the NHS, this had definitely been an exception, I was in a pretty bad way the next day, and it was only by having a chat to one of the lovely nurses who had been there on my first night that I discovered he was in fact an agency nurse, and not a regular member of staff. She was appalled and I was told to make an official complaint. To close this particular episode I can say that yes, I have made a complaint, but I also made it perfectly clear in my letter and my thank you card just how wonderful everyone else was in that place, because this is the really sad thing, they all do a really tough job, it is only when you are treated badly by one that you realise what an astounding bunch of people the rest of them are.

I left the hospital that day, I had been given the almost all clear, I was much better and they could see I was on pins because I was so desperate to leave. Sometimes there really is no place like home.

Once back home I had the longest shower of my life and used shampoo for one last time. See? Every cloud and all that, putting away the shampoo and expensive matching conditioner will save me a fortune, not to mention the savings I am making on razors.

Having no hair is weird, I have a lot more sympathy for bald men now. If you bang your head on something it hurts, a lot, more than you would think. If it's cold outside it is really cold, and there is no getting away from the fact that you look like a grown up baby unless you add lashings of mascara, and I don't know many blokes who could do that. People's reactions in general have been interesting, most have been utterly lovely, I, apparently have a good head, 'have' I said...so that helps. I was fitted out for a wig and yes it does look okay, but I don't feel like me in it and it itches my forehead like nothing else on earth so I only wear it if I feel I have to, and always under a beanie with the fringe part popping out.
We went out for lunch one Sunday to a lovely restaurant, I was either feeling brave or stupid, or in fact just warm, so I took my beanies off while we there. I had given the waitress a heads up that I would be doing that and she was lovely.  However, I wasn't prepared for one woman who was unable to get a proper look at me as she was facing away from our table, and having been told by her son / toyboy that there was a baldy in the vicinity she spent the entire meal craning her neck or turning in her chair to look at something  behind me so she could check me out. That was uncomfortable and a bit sad for someone who really should have known better.

My advice to anyone who sees a female baldy (and it is obvious that we haven't chosen to look like this) is to give them a big smile, tell them they are being brave, seriously, even a sympathetic look works because it takes so much courage to just go out there trying to be normal, no wonder you don't see us around much.

One lovely friend who has a huge heart but not always the best way with words saw me a few days after my second chemotherapy session. I wasn't feeling brilliant, so I didn't have my usual slap on, I warned her I didn't have any hair and asked if it was okay if I took my beanie off and promptly whipped it off. She stared at me for a few seconds and then said:

"OH, have you seen Breaking Bad?"

Hair Today, Gone Tomorrow... Part 9

Feeling well and actually being well are two very different things, something I was to find out very quickly. It's a very steep learning curve this whole business, sometimes you pick it up quickly, other times it takes quite a while to sink in, it's terribly exhausting, a bit like a new job only without the benefits.

Three days after the first treatment and I was literally sick of lying around feeling weak and looking pathetic. I was up for going into town, looking at shops seeing people, anything for a normal life...The Boyfriend agreed only if I wrapped up warmer than a polar bear and we didn't stay too long. It didn't take too long to realise that I was not as alright as I thought I felt, a decided lack of interest in any of the sales items should have been a major warning sign but I persevered as I loved being out.
Even my appetite came back, much to The Boyfriend's delight I wolfed down a sausage in a baguette, the first thing I had eaten in days, I'm not sure which was better, the food or his delighted face as I finally ate something, just as good as retail therapy. I was on the road to recovery I was sure of it, I was going to be fine.

The following day taking a trip to see my Dad and finish off some Christmas shopping all seemed like such a good idea, driving for two hours? No problem...shopping, wrapping presents, working, eating, everything was starting to feel a bit more normal and I was delighted, a bit wobbly, but delighted nonetheless, I had no more chemo until the new year and just a routine pic line to be fitted after Christmas and I was feeling more than good, healthy even.

I woke up one morning with a bit of a sore throat but I thought nothing of it, it was that time of the year...everyone was coming down with something or other. But later that evening when my temperature started to climb I wondered if I should call the number on my special Heat Card.

I don't have a donor card, I'm not sure anyone would want my organs, the state they are in at the moment, but I do have a Heat Card, I have to carry this around with me, it was drilled into me at the first oncology appointment and also at the first chemotherapy session that this needed to be carried everywhere. I was given so much information that I am surprised anything stuck but this did. It has seriously fierce designs on the card, fire and brimstone and scary stop signs.  It's all to do with spotting the signs of Neutropenic Shock, this is what happens when your body cannot cope with a run of the mill infection, it sort of stops working properly due to immune levels post chemo - told you it was a learning curve.

The simplified non technical explanation goes something like this: while I am feeling sicky and rubbish just after each treatment my immune system takes a spectacular nose dive making me totally susceptible to catching anything from anywhere which isn't clinically clean. For you that would be fine, you have legions of healthy white cells battling away in your body protecting you from all manner of bacterial evil. My legions of good cells have been zapped away by the chemo on it's own mission to rid my body of, well pretty much anything...
Immediately after treatment I can't really move about much so no harm done. Then I gradually start to feel better and I behave in a normalish fashion going about my daily beeswax like leaving the house. This is not good, in fact this is very very bad. Going to the supermarket for example is a death trap, I'm not kidding, think of pushing a trolley and how many people have pushed that thing before you start your shopping? Have they all been spotlessly clean? I doubt it...But remember that I was told that I should feel better after a few days and that it was more than possible to carry on my usual routine, so I grabbed life and carried on regardless.

With a rising temperature I decided not to risk anything and I called the number and said I had a bit of a sore throat, and a temperature. They ran through some questions and advised me to take my temperature again, it was on the up so the nurse told me that she would call my local A&E and tell them to expect me. She also told me to pack a bag, which prompted my total lack of taking this seriously, I almost laughed out loud 'an overnight bag' surely not? I wasn't that sick. She persuaded me to pack one in the event they kept me in overnight, she knew what she was talking about.

Five hours later I was lying in a bed linked up to a drip and with an oxygen mask firmly in place, we were none the wiser as to what was happening or going to happen. The Boyfriend was struggling to stay awake but struggling even more with the idea of going home without me. I was being filled with fluids as I was badly dehydrated so very soon I was desperate for the loo, but no one had passed by for ages and as I wasn't allowed to go to the main toilet in the corridor (too many germs) I had to wait instead to ask a nurse, but only a nurse who was dealing with my case for help. That help involved a commode, yep I had to ask for a portaloo to be brought to the room. If that wasn't embarrassing enough it took nearly an hour before we were able to flag down anyone who could help, by which time I would have happily risked all manner of infection in the main toilet if only I had known how to unhook myself from all the wires.

A&E in crisis before Christmas? Yep, they weren't making that up.

The male nurse assigned to me, with a bare minimum of English was unable to tell us what was going on and could only repeat that the doctor who could help us would be along shortly, yes,the results of my blood tests were back but he could not tell us what they were, only the doctor could tell us and he would be along soon but they were having to deal with an emergency.
By 1.50am having heard the same reason yet again and having been very patient (no pun intended) I had had enough and I asked yet again how long we could be expected to wait to find out what on earth was happening. I knew they were busy but there are only so many hours you can wait with no new information whatsoever, and listening to someone tell you in very broken English for the umpteenth time that 'someone was coming' before disappearing for another forty five minutes you start to ever so slightly lose it. I was annoyed, tired and fed up, not to mention the fact I didn't feel too great and so, to my eternal shame I spoke loudly and slowly and made it clear that I wouldn't accept what he was telling me because I simply did not understand.  It was enough to alert the attention of a passing staff nurse, she understood the situation immediately and came in to see me.

"I have seen your results, your white blood cell count is dangerously low, and you have very low blood pressure" She continued, "I am heading home now but I can tell you that your chest x ray was clear so you do not have a chest infection but they need to find out what is causing the infection so you will be admitted to the Acute Medical Unit and you will be in for at least one night, probably two."

She then smiled kindly and said someone would be along shortly to take me to the unit where a bed was waiting for me and yes The Boyfriend should definitely go home.

Hallelujah!! Okay, I know it was not good news but information is key, and having been in the dark for hours it seems it does not always pay to be super polite, occasionally very occasionally it does pay to question the crib sheet lines you are being repeatedly fed. The Boyfriend didn't like leaving me but at that time in the early hours I think he was pretty relieved to be heading home and so was I for his sake. Within minutes I was being wheeled down corridors towards the unit where they had a quiet dark room and a bed waiting for me, I was fast asleep within minutes.

I was in an isolated room, no one was allowed in, without wearing gloves and an apron, I wasn't allowed out. I had a window to the ward so I could see people pass by and could see them looking in at me, I was hooked up to a drip to keep me pain free and hydrated and still I didn't really know what had happened except that I was pretty sick, my temperature was being kept at bay but I had all sorts wrong and a very sore throat. However my brain was telling me that there was also something else not right but I couldn't quite figure out what it was...yet.

It's early rise in hospital, the first round of medication is given between 5 and 6 am so no chance of a lie in, then you have breakfast and the doctors come round to give their prognosis. I still wasn't well (turns out that it takes a bit longer than a few hours to recover) my white blood cell count had hit rock bottom, and here comes the fun bit, I was going to need a stomach injection every day to build my white blood cells back up, that's what the man said, a stomach injection every day. When they tell me things like that I always say something along the lines of 'Are you sure?' or 'Really, do I really need that?' just in case they have somehow made a mistake. They never have so far but it doesn't stop me checking.
I was also told I would also need daily blood tests to monitor the count before they let me out, at this stage I wasn't seeing stars just needles, loads of needles. The infection was thrush in my throat, who knew? I swear I have not licked a supermarket trolley. Apparently there was no fight left in my poor body after the chemotherapy so I had picked up a bacteria from somewhere and it had knocked me for six. And I wasn't going anywhere for at least another 24 hours they said.

"Really?" I questioned them, "Maybe I will feel better later" I said hoping they would double check their notes and realise they should have released me first thing.

They shook their heads and backed out of the room leaving me alone.

So after all that good news and a piece of wholemeal toast I lay back in the bed thinking I could really do with a shower, and that's when I noticed the thing that my brain had picked up on before. Hair, my hair, loads of it, on the bed, on the pillows, on the floor, everywhere, and not just a few hairs which come out naturally, and not actual clumps, but way more than should be falling out, and a whole lot more than I wanted to lose from an already cropped haircut.

It's not as if I didn't know it was coming, I just didn't expect it to happen when I was on my own in hospital and feeling so unwell. It was a horrible moment, I can't dress it up or make it funny because it wasn't, it was seriously awful. I went into the bathroom and looked in the mirror, my hair was sticking up in tufts at the back, I gingerly smoothed it down and then tugged at a bit, it came out in my hand and I just stared at it in shock. If I could have stuck it back on I would have done.

I climbed back into bed, but before I did I brushed down the sheets shaking and staring in disbelief as the floor started to resemble a hair salon after a haircut. I sat in bed in shock and disbelief, not here, not now, my brain was screaming I simply wasn't prepared for this to happen so quickly.

Two nurses came into my room to change the bed, I started to apologise for the hairy mess on the floor and started crying as I explained:

"So sorry" I snivelled, "My hair started falling out, I just wasn't expecting that just yet, not here in hospital, I don't know why I'm surprised, it's not like I didn't know it was going to happen" I said through tears.

The lovely nurses were so upset seeing my distress which I was doing a really crap job of hiding. Sympathetic and caring they reassured me, went to fetch stuff so I could have a shower and said if I wanted to talk about it they were there for me. Kindness is a buggar when you are already upset, I just shook my head (gently though, so nothing else fell out) thanked them profusely for being so lovely, apologised over and over for the hirsute area around my bed and with tears falling down my face I went in to have the most careful shower I have ever taken in my life.

I can't explain why it hit me so hard, being ill, being in hospital, it happening so soon after the first treatment, all of those are good reasons, but actually it was the reality of it. I had a temperature during the night, my hair was stuck up at different angles when I woke and it felt different, it felt like it wasn't part of me anymore, it had stopped growing, it was on my head but it wasn't my hair anymore. I couldn't pat it down, ruffle it, or smooth it because I was scared it would come out. That made it real, really not mine. Chemo was proving to be the Heineken of chemicals, reaching the parts others could not.

It wasn't the worst of times but it was close.

My right arm was also having it's own bad hair day and was giving everyone hassle, unsurprising really, since my operation back in October I cannot use my left arm as a pin cushion so all bloods taken and drugs administered go into the right. Add into the mix the fact that the chemotherapy drugs dry you up and you can imagine the nightmare the nurses, doctors, everyone had trying to find a vein which would play ball. So when the junior doctor came in to tell me that my blood test had gone missing I wasn't over the moon, poor man / child (far too young to be a doctor as I told him) was devastated and could not apologise enough...He sat down next to me and tried to take some blood, it took three attempts  I was looking away from him while he was digging around and I was crying, it had been that sort of day, then I felt him stop and I turned and realised he had stopped because he saw I was upset.

"Sorry" I said again for the fiftieth time that day, "It's not been the best day, my hair is falling out and my veins don't work, I'm normally a lot happier than this.."

He looked so totally downcast sitting there with his syringe and so close to tears himself that I burst out laughing.

"It's fine, honestly" I said, "I'm sure we will find one that works soon".

We both then recovered enough to start laughing and talked about how rubbish the whole day had been. I told him he looked far too young to be a doctor, he admitted he was young but I said it was fine, I had noticed that he had quite a big head and that usually meant he was probably extraordinarily brainy so I trusted him. He even found a working vein in my stupid arm.

"I'm taking these directly to the laboratory" he said, clutching the test tubes, "I shall hand them over personally" he assured me, "no more blood tests for you today".

The people in this place are amazing, they care and it shows and that is incredibly important because being in hospital is no laughing matter. The nurses the junior doctor, the cleaning staff, all of them made a rubbish time more than bearable.

Which is why when someone isn't caring, but is in fact the opposite, it really stands out as the exception rather than the rule and is incredibly distressing as I was to find out...

Bad Superman - Part 8

Remember the old Superman film where he was a wrong un'? He had stubble, was aggressive and mean and snappy, and never mind saving the world he could barely raise a civil word.

Well, like Superman even fairies have bad days.

I've had quite a few recently and if you bore the brunt of my mood or short temper recently then I apologise, it's just terribly hard to be positive and 'look on the bright side' or at the 'success survival rate' or even the fact that 'it will all be over before you know it'. I am rude when I'm scared, and right now I am pretty frightened, I keep trying to be brave but it's terribly exhausting, I haven't yet started chemo but I have been sent the start date and subsequent treatment dates and that was enough to send me over the edge. On the same day I received that letter I  also received another one inviting to me a separate session called 'De-mystifying Chemo' a useful appointment which would help to allay all my fears about the upcoming treatment and explain what to expect. Shame they both happened to be on exactly the same day.

When I went in to sign my consent form I did manage to have a very civilised argument / discussion with my oncologist . I brought up the fact that she had gone on leave and I just mentioned that it would have been good to know as I had been very worried, it was a lot like lighting touch paper. If there is one thing the medical profession do not like it is being questioned, happy to have every part of your life dissected it doesn't work quite the same when it's the other way round. The 'conversation' went something like this.

Me: "It would have been good to know that you were going on leave for a week as I had no idea what was happening"

Oncologist: "I'm sorry but what has my personal leave to do with you?"

Me: "Well aside from the fact I was waiting on results which you felt were not clear, and my treatment depended and whether or not further investigation would be needed, the last thing I had heard from you was on Friday night at 7.30pm that you were not entirely convinced by the findings from the other hospital."

Onclogist: "I still do not understand why I need to let you know when I am taking personal leave, it is not your business"

Me: "Well it becomes my business when I have been pushed from one professional pillar to post, the fact that I had a pretty big scare due to an incorrect analysis of results only to be told that the one person I had come to rely on, the one person I thought I could trust was off on leave without letting me know what was going to happen next."

Onclogist: "There are a whole team of people here who could help you, I deal with hundreds of patients, my personal leave is not something I discuss with any of my patients."

Me: "I have only met you, and been given the number of your secretary, I have met no one else in your team and had no idea I had any other point of contact except for yourself or your secretary. Your secretary was unable to tell me of any results."

Oncologist: "I cannot be expected to let every patient of mine know when I am taking leave."

Me: "I totally agree, I have no need to know where you are going, how long for or if you have had a nice time, I am just one of those hundreds of patients and I just wanted to know what was happening with me and when. I was treated pretty badly over the last set results and was left waiting to see if my chemotherapy could even start".

Oncologist "We only found out today what the results were, so me going on leave had nothing to do with you being able to find out or not"

In fact I had been so worried about the results and the fact that anything negative could delay the chemotherapy that during the week I had called up the other hospital and had finally spoken to someone who had been able to find out the results (off the record) and reassure me that everything was fine. At what point is it justified that the patient has to turn detective to find out something because the right person to ask is on holiday?

I now felt so frustrated and fed up with the entire discussion I just wanted it to stop so I could sign the consent form and get it over with, so I did what all sensible women in the same situation would do, I started crying. I felt no guilt, although she did look slightly alarmed. Used to dealing just with cancer perhaps she appeared surprised there might be a heart function too. She did agree that I had been messed around with and the atmosphere between us started to thaw somewhat although there was definitely an underlying feeling that I should never have crossed the 'personal' line.

In the end we were friendly-ish, I signed the form and we discussed the effects of chemotherapy. Honestly this lot could win awards in sitting on the fence, I was told I probably would be very nauseous, but then again I might not be that bad, I may have mouth ulcers, but I might not, I might lose my hair but maybe not. She made it very clear that I should try and lead as normal a life as possible. I asked if I could carry on teaching my Spanish classes. She didn't see that as a problem, in all likelihood that would be fine, just be aware of any infections the children might have. That seemed like quite a big ask as there are 60 of them and they don't tend to carry warning signs...still, she was the expert.

I felt quite positive leaving her office, it wasn't going to be all bad this chemo beeswax, I should be able to just get on and deal with it, her reassurance that most people lead very normal lives seemed incredibly positive and in complete contrast to the horror stories I had heard. That's the trouble with me, if you say it can be done then I will do it. Regardless of the consequences.

So with term ending for Christmas, most of the orders already out for the coffee I tried calming down. Unfortunately Bad Superman crossed with The Mean Reds and with the first chemo looming things were not looking good, mainly for The Boyfriend who really did demonstrate the patience of a saint despite me spitting frightened fury at him at every opportunity. The first chemo was two weeks before Christmas and the next one after New Year, with a decent break in between to allow me to at least try and forget about it all before the first three months of the year were swallowed up by treatments.

The week before it all started was like a ticking bomb, just waiting and wishing the time away and yet hoping that every hour would drag by. I went to the nurse to have the dressing on my leg changed, she asked if I had had a flu jab. Nope, that one had passed me by, apparently I should have been vaccinated two weeks before the treatment started to give the vaccine a chance to work. Apparently I was going to be very prone to infections and viruses and needed this jab almost as much as I needed....oh I don't know, meditation? Who should have told me that? Where was that written down? Which manual?
She jabbed me and said I may feel some discomfort. Boy did she hold back on the truth there, I felt nothing for a few hours but soon enough my arm felt as if it had been held in between revolving doors, I was in agony and couldn't move it properly for 24 hours. Still, it briefly took my mind off the impending nightmare...


I have to have blood tests first before each treatment, this is to check your white blood cell count, your red cells, stuff and more medical stuff.  Then you are back a few hours later to have the treatment itself, that means you have three hours to find something to do, that's three hours of pretending. We tried Asda to pick up a few bits and then Sainsburys for a coffee, neither place was doing it for me, I walked up and down the aisles picking stuff up and putting it back all the while feeling like I had an illuminated neon arrow above my head screaming "Chemo Chemo Chemo". We eventually gave up and headed back to the hospital.

The room itself is open plan, several open plan rooms, all with armchairs and chairs lined up against the wall where all the sockets are. Lots of very smiley nursing staff running around being helpful and busy, lots of  not quite so smiley looking people hooked up to IV's all with their arms resting on white pillows. Machines bleep in continuation as they need to be re-set or their batteries fail...kidding just kidding.

We were given our seats, and to our left and right there were two men both hooked up to their IV's. The man to my right pretended we weren't there and avoided saying anything to us directly, this was quite hard as we were so close we were practically sharing a socket. I was unaware of the etiquette so I said hello to his wife. She managed a smile and a hello while simultaneously continuing to read her newspaper and avoiding all eye contact which was quite disconcerting. In the subsequent hours there she managed to cover The Mail, The Mirror and The Express from cover to cover she also did every quiz, crossword and Soduku inside the papers and and barely raised her head to drink a cup of milky tea. He husband was less than impressed when we spoke Italian as he was then unable to follow our conversation, I began to realise why his wife had brought so much reading material.

On our left was another man who seemed nice enough, he smiled at us and then just carried on minding his own business, reading his paper and absorbing his poisons.

The nurses were fabulous, there is no other word for them, all different nationalities and all wanting to make everyone feel as if this was a day out not a slice of horror. My nurse was called Blanchita, she was from the Philippines and was lovely, she had a super strong accent and I kept wanting to call her Margherita Pracatan (from an ancient Clive James show years ago) however out of respect I refrained, although in my head I did keep saying it 'Blankeeeta Practaaaan' over and over again for my own amusement.

All of the nurses were sweetly very curious about us and came over to chat to The Boyfriend about Italy and wanting to know how I could speak Italian, this did not impress the man to our right as he was evidently not used to new people being the centre of attention, he was the expert, an old hand at chemo and familiar with the treatment, the nurses and the tea lady. This man had bought the t.shirt having been there seen and done it all, he knew all there was to know about everything it seemed, except languages.

As we were talking about names Mr.T.Shirt said loudly and rudely to no one in particular "I can't do names I can never remember them all so I just call them all Love or Darlin'".

The lovely Blanchita practically reared up and pointed to a sign on her meds trolley and said politely but through gritted teeth: "My name is Blanchita, see here B L A N C H I T A very easy, I like to be called by my own name, thank you"

First rule of chemotherapy, never ever upset the nurses.

The meds trolley was wheeled over to me and 'my' medicines were unwrapped, bags and bags of comedy sized syringes the size of which needed to be seen to be believed, the first two were full of a bright red liquid, the rest were just as colourful but I stopped looking. Blanchita was very kind but even she was struggling with my veins, sitting in front of me she slowly administered each 'medicine' by feeding it into my arm, it was hard because my veins wouldn't play ball and were hiding from her, I totally sympathised and wondered if anyone would notice if I too disappeared. She persevered and wrapped my now cold stinging arm in a blanket to try and keep it warm, she also mentioned that each drug may have a special side effect, itchy bum (nope) fizzing sensation in my nose (yes) and an ice cold painful headache (yes) but these were only temporary and it killed time waiting for each one to happen.

I tried not to imagine the dreadful chemicals racing around my body, ironically on a mission to kill bad stuff which may be hiding somewhere, but at the same time destroying any good stuff which I've spent years building up. It was like a civil war raging inside me, with no one really sure who was on the winning side and me as the hosting battleground. As the drugs took effect I started to feel really strange, tired and out of it, Blanchita talked to me about fitting a Pic Line before my next session, no more needles she explained and it would make it much easier to give me the chemotherapy, it was simply a tap in my arm. I wasn't really listening, it's been a while since I've had any control over what is happening to my body, I just go along with it because the alternative tends to be worse.

Leaning my head back on the chair I tried to keep my eyes open and I saw the man on my left smiling at me, he then reassured me that a pic line was so much easier than needles for the countless blood tests as well as the chemo, I felt like I had been slowed down to the wrong speed but I managed to thank him, he then nodded at the sealed envelopes of syringes on my trolley and he said:

"If any of that spills or breaks it is considered a major hospital incident" then he went back to his crossword.

Even writing that makes me feel sick.

Leaving the hospital I was dosed up with anti-nausea tablets and anti-nausea steroids to be taken at various hours of the day mainly just after or just before meals which is a joke because the last thing you want is food, at any time of the day. Not initially though, I arrived back home early evening feeling spaced out, tired and interestingly absolutely starving. So I ate and then went to bed and although I slept for a couple of hours I soon woke and that's when it started...

My food poisoning a few weeks earlier was good practice for this, you feel sick but it's a sickness you can do nothing about, it is everywhere and nowhere in particular, it hurts but not like cramps it is a deeply unpleasant sensation which just seeps over you in waves making you groan because there is nothing you can do and no one who can do anything for you. I lay there hoping and praying it would pass or that the drugs would kick in and take the nausea away. The sickness I expected, my imagination took me by surprise, every time I closed my eyes I could visualise the stuff pumping around my body, I was back in the room with giant talking syringes and I could hear the machines bleeping. Hallucinating? Maybe. I wasn't asleep I knew that much, that didn't happen till early the next morning.

It took me about three days to start to feel normalish. I was incredibly weak but my appetite returned with a vengeance and I craved beans on toast, roast chicken dinners and fish and chips, I wasn't going to deny my body what it wanted to eat but it occurred to me that I certainly wasn't in danger of fading away on this diet if it continued like this for the next three months.

I had little energy but I was determined to feel better as soon as I could. I had been told that I was to live as normally as possible, and that is what I did. I did not feel like staying in bed all day, after all some people returned to work during chemotherapy, that's what the expert had told me and stupidly I believed her.

That'll learn me...