The Drugs Don't Work (Part Two)

Ok. The Tamazepam didn't work last night.

I am not kidding.

I took it half an hour before bed, as prescribed. I slept for 5 hours and then bam, 4.30am I was wide awake. I felt fine though, and I wonder if perhaps I didn't need to sleep any more than that?

I shan't bother with it tonight. I feel fine now, with no lingering side effects (even my mouth is back to normal). If I can't sleep properly tonight, then there is something majorly wrong with me, period.

Yesterday, after a full night's sleep, I was completely back to my energy-full self. I motored at work and put in a 12 hour day and felt so much better for being 'me' again. I find it very difficult not being able to be my normal self, particularly as I don't look like me either. I know I should accept that chemo is going to alter the way I am or perhaps what I can achieve, but not being able to 'work' and 'be' myself is a very dificult thing to do. As I said, next chemo cycle I shall be ready for everything...painkillers (check), Tamazepam (check), special mouthwash (check).

I have no real plans for the long weekend. I was unable to think further ahead than an hour or two at the beginning of the week. I think a quiet weekend will do me good actually; a movie and a book. Mind you, the local village are having their summer fete in the garden on Monday, so not so quiet after all. Excellent! Cake stall and a darn fine cream tea!

"Cake or death?" That's a pretty easy question. Anyone could answer that.

"Cake or death?"

"Eh, cake please."

"Very well! Give him cake!"

"Oh, thanks very much. It's very nice."

"You! Cake or death?"

"Uh, cake for me, too, please."

"Very well! Give him cake, too! We're gonna run out of cake at this rate. You! Cake or death?"

"Uh, death, please. No, cake! Cake! Cake, sorry. Sorry..."

"You said death first, uh-uh, death first!"

"Well, I meant cake!"

"Oh, all right. You're lucky I'm Church of England!" Cake or death?" - Eddie Izzard

8 Hours.

I have found the answer to my lack of sleep. It is called Tamazepam.

Last night, I went to sleep at 10pm and I awoke this morning at 7.30am. I had no dreams. I did not move in the night. It was the nearest I have ever been to being dead.

And it was wonderful.

Wouldn't it be great, if like those astronauts in movies flying hundreds of light years to a planet, they could just make me sleep for the next year or so...and bring me around when all this over? No pain, no yuckiness and no worry. Put me to sleep and wake me up when I am there, on Planet Normal?

Doc Lucy says it is ok to tkae it for a few nights and then, hopefully, I will feel a whole lot better. The lack of sleep was beginning to make me feel ill to be honest...forget the chemo, I am sure it was the lack of sleep.

She also prescribed a different pain killer for the bones...the one I was advised to take was responsonsible for stripping my stomach etc etc. Saying that, the bones seem ok now anyway. And my mouth no longer feels like I have been eating stinging nettles.

So, all in all, feeling a little better today.

Thinking about it, I was unprepared for it all. Taking the Taxotere early knocked me a little...but I think something I learned this week is you can know what the side effects are, you can know they might happen but you truly have no understanding until you suffer them. You can't really be prepared, not the first time I think...perhaps 2 cycles of ineffective FEC put me in a state of denial or, worse, a state of 'I can do this'? I am not beating myself up here, but I will be better prepared next time.

I feel like I have got through this week by the seat of my knickers. Really. I have lurched from one thing to another, handled it as it has hit me hard and generally muddled through. I don't like living like that...next time I will have the pain killers ready as soon as it starts; I will take the sleeping tablets if I need them (and am allowed them? Perhaps they are contra-indicated with Dex?) and I won't got throught this again in the same way.

Ta muchly all for reading. Normal service, I hope, will resume tomorrow. No more feeling sorry for myself...

"Sleep is pain's easiest salve, and doth fulfill all the offices of death, except to kill" - John Donne

Yuckiness.

I thought I'd blog a quickie, seeing as I haven't written for what seems an age (time is strange at the moment!) and I am sure you are all hanging on the sides of your chairs awaiting a further instalment. And also to say thanks to everyone who has sent me little messages of love and support. It is appreciated...

OK. Taxotere is truly shit super weapons grade stuff. I really am suffering side effects. I know that sounds odd, but remember I haven't suffered at all for the first lot of chemo and this has actually been rather a shock...and a steep learning curve. I just so wasn't expecting it to be this 'yucky'.

My mouth feels like it is full of hot, wet cotton wool. My tongue feels swollen as do my lips. They are not, it is just everything feels odd. No mouth ulcers and it isn't 'sore', but the mouth is affected.

No sense of taste really. No appetite either.

My stomach is also affected now...as they said it might. Nothing awful and I wouldn't say it is chronic enough to have to use the medication...yet. My intestines sound like a cappuchino maker! Then it is off to the loo...

The bone pain is still there, but I am either used to it or the pain killers are helping.

My biggest problem, and it really is a problem, is my lack of sleep. I am still not sleeping. It can't be the Dex now...it is a mixture of the bone pain and, I think, routine. I am just out of the habit of sleeping for more than an hour or so in one go. Thus I am awake, and really awake at least 4 times in the night...I go for a walk, I read, I just lay there.

Night time is like torture.

...the knock on effect is my head feels like I have a plastic bag over it. I think I am probably exhausted. I can't think straight, I have no energy at all. I can't be arsed!

And, believe me, this is so hard for me. I am normally full of energy and get up and go. I don't do 'can't be arsed'. But I think I need a night's sleep. It would help me enormously!

It isn't easy working full time like this...on the other hand, I have little choice.

I have therefore decided to make an appt with Dr Lucy and see if she can prescribe something to help. I have never taken a sleeping tablet in my life! They frighten me, to be honest...just like a general anaesthetic frightens me. Ridiculous, I know. But I don't think it is healthy to no have more than a few hours sleep in one go in nearly a week and try and live normally whilst having chemo.

Lordy, this all sounds so negative. It is not. I knew this might happen and I am sure lots of people suffer far worse than I me. Like I said, if Kylie can do it, so can I. I am sure the week will get better.

I hope so.

3am Eternal...

I am pleased to inform everyone that I have a had a pretty shit 36 hours.

I have had a side effect. And trust me to be the one who gets a side effect a little further down the list of 'potential side Taxotere side effects'. Not content with suffering from nausea, constipation or vomiting,no sirree, I have to go and get something a whole lot more annoying. And a bit more painful.

I feel like someone has taken a sledge hammer to my bones. Not just my joints, my bones.

It started Saturday night. I haven't and don't sleep well, as you all know, when I have that Dex in my system. I have seen every hour of every night on my bedside clock since Thursday night. Honestly. I get up in the night. I read. I drink water. I walk around...now 4 nights with no more than an hour slept in full. Normally, I am up for good by 3am.

Early Sunday morning, I woke up to pain in my knees. Then my ankles and then all my bones. I don't normally toss and turn whilst in that world between half sleep and half awake...I don't get annoyed I can't sleep because I know it is chemical.

But the pain made me toss and turn.

I wondered if I was imagining it a little...but I do remember reading about this pain in the potential side effects. I looked it up on the net. At 3am. I think it is something to do with the chemicals going through you bone marrow...the nadir on Taxotere starts at day 5 (unlike FEC that was day 10-12). I will be tired and at risk of infection this week...

I did search around to see how you 'manage' this pain. Apparently you 'manage' it with painkillers. Unfortunately, no one offered me any painkillers at the hospital. I got anti-sickness and anti-constipation and anti-mouth ulcer. No anti-pain. And you can't just use anything. I know I can't take certain NSAIDS or aspirin on chemo...and I don't keep any painkillers in the house. I don't take them normally, plus I was told by nursey Bernards not to take things to 'mask' a temperature.

I didn't want to leave the house yesterday. I didn't much feel like doing anything or seeing anyone. I certainly didn't want to be fussed over and, I think, I may have been feeling a little sorry for myself. I decided to let it run its course and see how it went, how long it went on for in order to report it honestly to the docs next time. If I took painkillers, I would be masking the full extent of the side effect, right?

Had another bad night, although not as painful as Saturday, but I have been up since 3am reading. Again. I could go back to sleep now, but I have to get ready for work now.

I think the worst of the bone thing is over now anyway. I imagine it comes for a certain time in each cycle (like day 3-4) and then it goes...and I may not get it as badly again next time if my body calibrates itself against it. I have read this can happen. I will get some proper painkillers prescribed too...but yesterday, on a Sunday, I didn't know what to do or who to ring.

And I didn't want a fuss made. I hate fuss. If I am on my own I can deal with being poorly. I am not good if there is someone there fussing over me. I want them to go away so I can deal with it on my own.

Ha, I do remember one thing yesterday. For some reason some bloody bloke rang me and asked me to take part in a 'customer service survey'. On a bloody Sunday afternoon?!?

'No, now is not a good time' I said feebly down the telephone.

'It will only take 6 or 7 minutes' he replied.

I wanted to tell him to fuck off and leave me alone, which is why I don't like to have people around me when I am poorly, because I tend to be rude to them. It takes a lot not to be rude to people when you are in pain and feeling sorry for yourself.

'Look', I said 'I have cancer and right now I feel like I am going to die because the chemotherapy is making me sick' I went on, trying not to say 'fuck' and 'off'.

'Oh' he said. And hung up. Bet no one has ever given him that line to get out of a telephone customer survey.

I feel like a bona fide cancer patient having chemotherapy now I have a side effect to report to you. Honestly, it's not so bad. I have just felt like my bones have cramp...and cramp isn't the end of the world. It could be a whole lot worse...at least I haven't had a mouth ulcer yet!

"Pain is inevitable. Suffering is optional" - anon

Avoid all needle drugs...the only dope worth shooting is David Cameron

I have indeed been up most of the night...

I was tired. I went to bed at about 11.30pm. I fell aleep for an hour or so and, by 1-am that was it. I saw every hour tick past on the clock. I read an entire pulp novel. I cleaned the kitchen. I attempted to go back to sleep at 6am. I gave up, made some coffee, got my mail in and am sitting here now. I have to go to work in a few hours. And I am about to take another 4mg of Dex now and more later tonight, if I follow the Dex schedule.

I normally hit the pillow and sleep for a straight 7 hours, often in the same position I fell asleep in...

I could def off the Dex, seeing as I don't feel any different to the way I did pre-Chemo yesterday. I certainly don't feel nauseated or sick. I am not going to vomit. My hand feels fine and the swelling has gone down...but I feel I ought to take it because of the new drug blah blah. I do comply with the docs instructions...they do say you can def off the tablets if you feel well...but first Taxo? I think I ought to do it this time. I might not bother will the anti-sickness, which I am supposed to take at 10am. If I don't feel at all sick beforehand, that seems pointless. The Dex is supposedly good for sickness...but I want to make sure the anti-imflamatory part of it keeps my veins in good order really.

It's obvious to me now that us chemo patients aren't fatigued and tired from the chemo! It's the bloody Dex they give us...if this goes on, I'll be knackered by Sunday!

I do have to keep an eye out for other 'Taxotere-specific' side effects over the next few weeks. These include swelling of hands and feet, blood clots, muscle tightness and joint pain. These are all serious and I need to call the on-call oncologist at the hospital and go straight in...not sure why? Imminent death? I will keep an eye out for it all.

Right, hitting the shower and might as well go into work early. My loss; their gain!

"Faster, faster, until the thrill of speed overcomes the fear of death!" - Hunter S Thompson.

"Paint it Black"...

Fight Club Round 3 in, done and over with.

I was fine. No wheezes, no redness, no heart stopping/starting/dancing about.

The nursey Bernard was a little cack-handed with the needle...I have a very mangled, swollen and bruised hand from her lack of prowess with a cannula. What I need is a smack head. Those smack heads can get a needle into any vein they want...

I also have to paint my finger and toe nails with a dark colour. This stops UV infiltrating the nail bed and reacting with the Taxotere...hopefully preventing my nails coming out. My toenails are generally painted black or Rouge Noir anyway...like I intimated before, I am an old goth at heart.

I am not sure if I have written anything about Dexamethasone. They give you this as part of the chemo...it does useful things, like stopping your brain swelling.

I don't get on with Dexamethasone...I have been told by the docs it is related to Dextroamphetamine. Those soul boys didn't call their drug of choice Dexys Midnight Runners for nothing. I go to sleep and a few hours later I am up, up, up. I could run a marathon on Dex or dance all night (but not to Come on Eileen, I draw the line at that). One woman who took Dex for her chemo told me 'my teenage childrens' mates like to come around when I have had chemo because they like to see the mad woman with cancer on speed....".

My experience for Round 1 and 2 is 8mg IV of Dex: I am up in the middle of the night for the four days following chemo. Today, I had 20 mgs of the bloody stuff. I have to take a load more over the next 3 days...

...it should be worse then, seeing as they have more than doubled the intial dose. Perhaps I will indeed take up marathon running. Or perhaps revive those 1920s Endurance Dance Marathons? (They Shoot Horses, Don't They? !!!). I have never been much of a self medicator...never felt the need for uppers and downers...I opened my door of perception a few times...but I have never needed to medicate myself to get through the night...now, at the age of 41, I am medicated to stay up all night.

Party round mine then...?

"It's a chemical thing..." Keith Richards, on not sleeping for nine days due to narcotic cocktails in the 1970s.

"The Drugs Don't Work..."

So sang Richard Ashcroft in the Verve, 1997.

Let me explain. Today was Round 3 of Fight Club. I went to be Domestos-ed. I saw yet another oncology consult...not House, not Chemical Ali. This one was Dr Sharif. I shall call him Omar...

Omar asked how I was doing:

"Fine" I said, "no side effects bar a little phlebitis in one vein on left hand, which I have cleared up with some Fucibet...apart from that nothing...and I didn't take the anti-sickness and steroids because I wasn't sick after the last chemo...in fact" I continued, "it's as if you haven't given me chemo at all".

Famous last words. How prophetic they have turned out to be. Me and my bloody big mouth.

He showed me my bloods. My neutrophils were more than twice as high as last time...which is more than pretty good for a chemo patient about to start cycle 3. Indeed, it is rather odd, because each cycle should hit the bone marrow harder, thus producing less neutros, not more.

Or so the experts tell me.

"We have a small problem" said Omar, "we are disappointed with the results of your scan".

If you remember, I had an ultrasound to check on Colin last week. Radiographer, not the one who originally scanned me, said that Colin 'seemed to be smaller' and 'we don't generally see a significant reduction after 2 cycles anyway". I went away from that pretty happy...at least Colin hadn't eaten loads of pies and got bigger.

Colin hasn't got bigger. He hasn't really changed at all. Notes were consulted and new measurements post-chemo show he has not changed at all. The little fuck. I think I would rather this radiographer had been a little more honest and not said the words 'seems to be smaller'. I would rather have heard 'seems to be the same'. I can handle the truth if that had been the case.

"We believe the FEC chemotherapy isn't working as well as it ought to" said Omar, "we would like to see a reduction in the size of your tumour and we haven't. Although the last two cycles haven't worked, it's not entirely negative as it hasn't got bigger but we think FEC is not going to work for you...".

My first thought? The radiographer told me a load of shit and fucking typical: I, the medical enigma who doesn't suffer any side effects; the one with the constitution of a small ox; the one that bounces through chemo: she is the patient who is bigger, stronger and faster than Domestos. No wonder I haven't suffered; the bloody stuff can't keep up with me or Colin...in fact, I have probably developed some antibodies against it post-cycle 1, as I have done with other systemic drugs including other chemo drugs used for my other disease, which I took copious amounts of. Methotrexate didn't work and I didn't suffer any side effects with it either.

"And?" I said to Omar, being oh-so logical and straight-thinking.

" We want to def off the the crappy, rubbish FEC because it doesn't work and put you on the fuck-off Power Grade Domestos called Taxotere straight away...the drug that kills everything, including you, dead".

He didn't really say that. But's that what he meant. Fuck. I am not ready for that shit yet. I was enjoying being OK on FEC for another 9 weeks yet...giving me time to get used to the idea of the strong Domestos.

"But" continued Omar, "you can't have it today because the nurses aren't ready for you yet".

Let me explain. Super strong Domestos isn't like FEC. You can't just shove it in with one nursey Bernard, you have to have it in a special room with two nursey Bernards...because it is a nasty drug that can cause instant nasty side effects...like Anaphylaxis as it whizzes around your veins and hits your heart...you go red, you can't breathe, things can swell...

Sometimes. I shan't over-burden you with the potential side effects afterwards. Let's just say a number of healthcare professionals have asked me today if I understand the side effects associated with Taxotere post-infusion. I do. And they scare the knickers off me...they make FEC look like a walk in the park on a summer's day (which it has been for me...).

OK. The upside of a this first:

• They know FEC isn't going to work on me...because Colin hasn't changed, meaning I change drug.


• Colin isn't bigger (the little fuck).


• I knew I was going to have to take the shit called Taxotere, I am just having it earlier, that's all.


• I am glad I decided to have chemo before surgery, or I might have used FEC and we wouldn't have known it wasn't working seeing as Colin had met his end via surgery. The cancer cells in my lymphs may have gone on into my body and joined up and we wouldn't have known.

OK. The downside to this:

• The next ultrasound at the end of June (after 2 cycles of Taxotere) may show that Colin hasn't reduced enough or at all, meaning Taxotere hasn't worked either. I will have to have a very, very swift full mastectomy because they would be concerned the cancerous cells have had time to migrate.


• Knowing one lot of chemo, one specifically created for my type of cancer, doesn't work makes me think I might have this problem with other drugs...


• I have to bloody go back to the bloody RB again tomorrow.


• I will be poorly at a time when my work schedule is heavy, over the next 4 weeks.


• Did I say I have to go back again tomorrow? I am bloody pissed off about that. No fun going through rush hour traffic and sitting on the M4 for ages because of roadworks...

I know that Taxotere may work. I know this is Plan B. But this is a potential spanner in the works. I can see, in my normal pragmatic and logical way, that there are potential consequences to FEC not working. If Taxotere doesn't reduce Colin enough, they will whip my tit off. I will not be able to potentially have more chemo if this happens, which means potentially there may be stray cancer cells in my body and I will not be told I am cancer-free after everything because the drugs don't work. I will have to live life post-everything with the thought 'have I got it in my liver/bones/lungs' because that is where the next cancer will turn up, seeing as my tit has gone. Women who have successful chemo/surgery/radio can be a little more 'confident' than I would be at this point.

Now they can try and give me other chemo drugs, if Taxotere doesn't work, post-surgery. But these drugs are not first choice. They do not have the positive outcome that FEC-T has, or they would have used them first. Moreover, if they do decide to give me 'something lurking in the back of the dusty chemo cupboard', I won't be able to have reconstruction at the time they lop off my right tit. I will be titless whilst they do this. I hate the thought of that. I don't care if it isn't the right thing to say, but it just isn't right having one tit.

Dogwankingfucksticks. It's all gone tits up here at Plaingoldband Towers.

Quote of the Day: " If there is a 50-50 chance that something can go wrong, then 9 times out of 10 it will..." - Paul Harvey

Fight Club Round 3

I am off to the West Wing to be Domestos-ed. Today I am on my own; chemo-buddy has SATS at her school to be dealt with.

I think I would rather be Domestos-ed than sit exams.

Be back later.

So long farewell, auf weidersehen adieu...

'He's not the Messiah...'

Lordy, I haven't written anything for 5 days! In my defence I have been away since Thursday...went to visit friends and had a long weekend away.

On Friday, I was taken by a said friend to a wig shop. She was determined to at least get me to try one on. I have always felt slightly 'uneasy' about a wig. I haven't really got a clue why.

Until now.

The shop specialises in wigs for people who have lost their hair through chemo or alopecia. Wig lady said 'try one on that is as close to your own hair as possible...'. So I explained my hair; colour, length style...'think Cheryl Cole' I said, 'but real hair, not extensions'.

So out came a wig. On it went. Uncanny. It really was my hair. The colour, the length, the style.

And it was wrong.

It felt wrong. It wasn't my hair, it was pretend my hair and I didn't feel the need to pretend it was my hair.

Now, said friend who took me to wig shop has no hair. She has full alopecia and it fell out over 25 years ago, when she was pregnant. And it didn't grow back...she is an expert on having no hair. She wears wigs. She says she wants to feel 'normal'.

I don't want to be normal. I haven't lost my hair due to alopecia. Mine is entirely chemo-related and it will grow back in a year or so. But friend, she doesn't know why her hair fell out and she has been told it will never grow back. Well, she has been hairless for over 25 years...I understand her need to feel normal...

Me. I have accepted why my hair had to go and that it will be back. I have dealt with it and I can truly say it isn't a problem for me anymore. It just is, for now anyway.

'I can't wear this wig' I said, 'the only wig I will wear is one that is not my old hair' I continued, 'you give me a wig that is obviously not my hair and perhaps I'll try it on'.

Wig lady didn't have any Siouxie Sioux wigs. Nor did she have a Robert Smith of the Cure wigs. She hadn't heard of either of these people. 'What about Louise Brooks then?' I said, 'you know, silent fim star of the 1920s'?'.

My hunt for a wig-that-wasn't-my-hair was not going well.

'OK, how about some bright blonde dreads?'. Think the evil twins from Matrix Reloaded. Wig lady just looked at me rather oddly by this point. 'Not a lot of call for blonde dreadlocks from the female alopecia and chemo patient community' she said...

Then she appeared with a black baseball cap and attached to it: lots and lots of blonde tiny plaits. Not quite dreads, but pretty close and very cool. I tried it on, expecting to look rather foolish.

Surprise. I looked oddly ok. Indeed, the blondeness rather suited me. Moreover, as anyone who has had their hair beaded, dread-ed or plaited can attest, the hair around the ears is pulled back sharply and my having no hair in these areas looked, um, normal. I tucked the plaits behind my ears and looked like someone with a plaited mohawk. Excellent. Just what I wanted. Not my hair. Nowhere near my hair. Pretend-not-my-hair.

'I'll take it' I said.

Now all I need is a white suit, some sunglasses and I can attempt to kill Neo, Morpheus and Trinity. Shame I can't just disappear and reappear at will too...

On my way home from weekend away, I stopped at a small M&S to buy something for tea. I was busily minding my own business choosing which flavour of my favourite maize-based snack product to buy when a female M&S employee tapped me on the shoulder.

'I understand what you are going through' she said 'and it will be ok'.

I was somewhat fazed. How could she possibly know that I couldn't decide whether to buy salt and vinegar or sour cream and chive flavour? I was stumped and just looked at her.

'Your chemo, your cancer' she went on.

Truthfully, I was completely fazed. I wasn't expecting this. How on earth can she know me or about Colin?

'I'm sorry' I said, looking as fazed as I felt.

She nodded at my head. I was wearing a black pirate's bandana. That bloody badge of honour. It had given me away...

'Oh' she said, 'you just shave your head then, you don't have cancer?'. She looked unsure of herself for a second.

And, for a tiny second I wanted to say 'yes' to her, that I choose to shave my head and wear a bandana...that I don't have cancer and I am not having chemotherapy.

That would be very naughty and I am not so naughty I could lie to someone's face. Particularly to a woman who was trying to be sisterly.

'Cycle 2 about to start cycle 3' I said. I felt annoyed. I felt she had come into my space and my maize-based snack product shop. She started telling me about her breast cancer etc etc. I was perfectly nice and polite and I thanked her when she said 'good luck' as I left (with salt andvinegar flavour snacks). But I felt invaded.

The week I found out I had to have chemo, I saw a woman in Waitrose. Like me now, she was obviously having chemo...bandana, the tell-tale no hair at the nape of her neck, no eyebrows. She looked like she would rather be anywhere else than Waitrose. And I thought 'should I say something to her?'. And then I thought absolutely not. I don't know her. She doesn't know me. I wouldn't like a stranger coming up to me purely because they were also having chemo and just start talking to me.

Does this make me not a very nice person? I'll talk to anyone, me. I am chatty and friendly. But I have stayed away from internet support groups and not-internet support groups. I don't feel the need to sister-it-up with other women who have breast cancer. If you feel the need for it, go for it. I do not.

I am not a very nice person...I feel bad that I was annoyed at this M&S woman for being sisterly-in-cancer. She was, after all, just being supportive. But I don't feel part of some 'club'. I don't feel like I need people to be 'supportive'. I don't want to be singled out.

Perhaps, in hindsight, I ought to have bought my pretend-my-hair wig and then I wouldn't be singled out.

As Brian said to the followers in Life of Brian 'Oh just go away and leave me alone'. Not that I am the Messiah or anything. I am just a naughty girl.

Shiny happy bunnies...

I can't believe it is Wednesday already...two weeks since round 2 of Fight Club and only one more until the next round. Technically, I am a quarter of the way through but by next week, more than a third.

Where is the time going?

I will be coming out of the nadir over the next day or so. Feel absolutely fine and certainly, no fatigue or tiredness which I understand is normal at this point, seeing as my bone marrow is all but dead right now. I think part of this fatigue is down to the drop in haemoglobin, which obviously takes oxygen to those red blood cells...a significant drop causes anaemia. Red blood cells themselves don't get overly affected by chemo...as their life span is about four months, thus they are not 'fast growing cells'...unlike those poor neutrophils, which live a few days. Anyway, my Hgb was perfectly normal last time....not bad for a veggie! I have never been anaemic in my life...must be all that tofu, eggs and brazil nuts I eat.

I am determined to educate you lot about chemo, systemics and blood work!

Shiny pate is great. Well, not 'great' as in a fashion choice, but I don't have any problems with itchiness anymore. I do find myself attempting to run my fingers through my hair now and then...like people who have lost limbs and sometimes feel they are still there, I sometimes forget I have lost my hair. Very odd. The other thing is I must remember to put a bandana on before I leave the house...it must become second nature. I mean, you don't leave the house without your knickers on, do you? Well I don't...can't speak for you lot, who I like to believe are all degenerates with shady morals...

I might put a post-it on the front door "Don't forget your bloody bandana or you will scare people!"

Right, off to the dry cleaners to put to deliver all my clothes that aren't cancer uniform (jeans/stripey tops), all the clothes which post-chemo-lack-of-hair-Plaingoldband-cannot-wear-anymore. Might as well get them cleaned and wrapped up for when the hair grows back...apart from that. life is great and I am a happy (bald) bunny.

Why did Plaingoldband put a rabbit on her head? Because she wanted a head of hare...

Smaller, smaller, smaller...

Today I dragged my ass over the RB for the first of my appointments with the ultrasound machine. If you remember, I am doing the chemo gig first so that Colin gets a blast of minimising chemicals in the hope of escaping a full mastectomy, seeing as the little shit has decided to anchor himself so close to my nipple. The FEC-T chemo system can, in some cases, shrink the Colin-type of tumour up to 50%. If this happens, I might get away with a much neater (and less traumatic and painful) lumpectomy. It's a gamble and there are no guarantees...

Unfortunately, I saw a different consultant radiographer...so she had to try and mark Colin in a similar way to the previous one with the machine to try and get a handle on size. When you are talking an irregular-sized 147mm of cancerous tumour, it isn't an easy job. There was a lot of bleeping. It is a rather surreal experience to be honest...darkened room, bleeping machines and your tits out whilst a stranger squirts clear gel over them.

Anyway, she did her best and said 'I am pretty certain the tumour is smaller, which is pretty good seeing as you have only had two cycles. By cycle 6 I reckon we will see significant shrinkage'. She also said there was still only one slightly enlarged lymph node...so it hasn't spread to any others.

Result. I decided I would be happy if Colin hadn't got any bigger at this stage. So the feeling of being kicked in the tit this last 6 weeks is indeed the chemo working its special chemical magic.

It's a good feeling (shrinking Colin, not being kicked in the tit). If this continues, it makes all the drugs, chemicals and pills worth it...

"One pill makes you larger. And one pills makes you small..." Jefferson Airplane - White Rabbit.

You hear that, Mr Anderson, that is the sound of inevitability...

I have had a thoroughly blissful weekend. I have only left the house once; to get all the Sundays, which I promptly took back to bed and stayed there with them until lunchtime.

I have slept, eaten, watched telly, watched movies, read a book (only a crime fiction...can do one in a morning), eaten some more and generally potatoed myself out all weekend.

Had quite a few calls from people asking what I am up to and am I coming out; 'Nope' I said, 'I am staying home and doing absolutely nothing'. I could do this a lot more. I cannot articulate how wonderful it is to do absolutely nothing, see no one and march to the beat of my own circadian rhythm.

The one thing I did do was 'Bic' my scalp. Well, not Bic, more Venus Goddess razoring really. Not sure if Gillette envisaged a woman using their product to shave their chemo-ravaged scalp, but hey ho, that Satincare gel and those smooth glidebars give a great velvet-smooth scalp. It sounded very odd as the razor passed across my stubble. You know the sound I mean? Pretty smooth up there and it feels great; less Sinead O'Connor and more Dalai Lama now. Get me an orange kaftan and I could do a great impression...not so much a goddess on a mountain top (yeah baby she's got it), more a bodhisattva of couch potato enlightenment.

It looks weird, but 'good' weird if that makes any sense. Finally, I am bald, and it wasn't chemo, it was me. My own doing. And it is all rather liberating...I am not sure how other women deal with the hair thing, but I am impressed with the way I did it...a few months of getting progressively shorter and shorter. It was the right thing to do, even if it caused some angst along the way. Indeed, now it has all gone (albeit by my own Venus razor and probably a month or so prematurely) it feels entirely natural...as if I have accepted the inevitable and just got on with it.

And, as chemo is going ok with no side effects yet, at this point in time I feel the whole hair thing has been the worst thing I have had to cope with...and I have not only coped, I have coped with dignity. I will try and deal with the other inevitables similarly...

This whole cancer thing brings with a it a lot of inevitables: chemo, surgery, radiotherapy...perhaps the ultimate inevitable eventually. But even the inevitable can be dealt with...really. 'It's ain't what you do' sang Terry Hall and Bananarama, 'it's the way that you do it'.

"Happiness is not something ready made. It comes from your own actions." - Dalai Lama

Who Loves You Baby...

Hah, so caught up with the pure theatre that is this General Election, I had forgotten I have cancer!

Actually, I have had a bit of a cold this week...probably caught off some Brightonian last weekend...no big deal really, had a runny nose and felt a bit rubbish on Wednesday but importantly, no temperature and I feel better now. Obviously, I was a little concerned at the beginning, seeing as House made it very clear a common cold could potentially kill me!

My chemo-ravaged body had got a few neutrophils left and I seem to have faught it off thus far...mind you, I haven't had a cold for two years and my lower immunity must be responsible for this one. I begin my nadir about now...I have no neutrophils now, so I hope the remainder of this cold doesn't cause problems...like pneumonia. More importantly, I want my body to get better so I can begin making them again next week ready for chemo the week after...if I don't get enough, they won't let me have chemo.

On Monday, I have my first ultrasound post-two-cycles-of-chemo to see how Colin is doing...or, to put it another way, to see if he is shrinking under the effects of two cycles of FEC.

I have been reading a bit lately and I understand my type of cancer/tumour size can potentially be shrunk by up to 50% usingFEC-Docetaxal. So I hope he has shrunk by 5% or so...we shall see. Hey, I get to get my tits out again for the doctor...

Hair status: Not much left now...because I have very dark hair, I seem to have a 5'o'clock shadow...but there are big holes in it. I washed my scalp yesterday (can't say 'hair' here because there truly isn't enough to need washing). I don't doing it often because the amount of short little hairs left in the bath is depresssing and a pain to clean out afterwards...but I needed to wash the scalp as it felt dirty. Lord, the amount of hairs left was incredible...and my bald spots were much bigger afterwards. I can't decide whether I want to be Telly Savalas or Mini Me as I get balder...

I now wear a bandana every day. I have to. I look scary without it and although I don't mind scaring small children, old ladies and dogs, I do not wish to be stared at, particularly when my hooter is red from wiping my nose and I sound like Mariella Frostrup due to the effects of my cold. Nothing denotes 'cancer and chemotherapy patient' more than the bloody bandana on the head. It seems to be the badge of honour for us...I hate it. My head feels itchy under it. I would prefer not to wear it, but until the head is smooth and shiny, I feel I have to. I don't want to scare people...not at the moment anyway.

I do not need to shave under my arms anymore. No hair has grown there for weeks. Also, my legs are no longer producing hair, so not needed there either. The S&C are hanging in for the ride though and my eyebrows are also fine...although no tidying needed.

I have also bought myself another pair of Converse and some more stripey tops. Seems to me this is all cancer Plaingoldband can wear now...so that shall be my cancer uniform. I am glad I haven't got any weddings to go to this summer...

I have also been asked to take part in an Oncology Patient Perspective group study...I don't have to commit for a bit, so I thought I would see how I go through my next cycle.

So, apart from no hair, the remnants of a cold, a red hooter and a dirge of stripey tops, I am feeling good. Which is more than can be said for Gordon Brown this morning...

Accessorising for cancer....

Today, a stranger in a shop said this to me:

"Why don't you draw attention away from your bald head by wearing large jewellery, you know, like a big necklace?".

This was what I wanted to reply:

"Why don't you go fuck yourself?"

I didn't. I wanted to, but I didn't.

I know she was trying to be helpful and kind and thoughtful but hell, lady, if you knew me you would know I wouldn't wear large jewellery like a 'big necklace' if my life depended upon it.

Who do you think I am? Pat fucking Butcher?

Save me, save me from turning into someone who accessorises for cancer!

I can't find myself...

I am not me anymore. Let me explain.

I am not me anymore because I no longer look like me. Having no hair really fucks up what you look like. You just don't look like you at all. I don't recognise myself when I look in the mirror (not that I do a lot of that anymore. I don't like to).

But there is something else. I don't just look like someone else, but I also cannot wear the clothes I used to when I was me. They don't 'fit' this person I see in the mirror (when I look). A stranger cannot wear my clothes.

On Sunday, post-shaving-head-to-have-less-hair-than-Sinead O'Connor, I had to get myself sorted to go off to the coast with Drummond et al. I have wardrobes full of clothes. I have a lot of clothes. Granted, I wear a lot of black, but I have a lot of black clothes...I also own a lot of shoes too.

I tried on lots of things. I looked in the mirror and this stranger stared back at me and she was in my fucking clothes! How dare she?

The only, only thing this stranger could wear was a pair of jeans, Converse and a stripey top. She looked OK in that. She looked bloody ridiculous in anything else. And don't get me started on shoes! This stranger looks perfectly stupid wearing a pair of heels, even small ones that pre-shaved head Plaingoldband looked OK in.

I have said before, hair is important to me because it projects who I am. Always has done. And hell, it seems clothes, what you wear and how you put it together does too. Projection of self, of character, of mood, of intent. All these things. Yes, old Plaingoldband would wear jeans. But she could wear them with heels and a black top and look like her! This new one doesn't.

I no longer feel like me. I am on temporary 'hold'. My video is paused. I am not really here anymore.

Well, that's how I feel. Make of it what you will. I am sure some psychobabble doctor would go into some psychobabble rubbish about it. Or perhaps a first year fashion student at St Martins. The upturn is I don't feel like me anymore.

I hope she is not lost forever...

dogwankingfucksticksnohairshit.

"Fashion is what you adopt when you don't know who you are" - Quentin Crisp

Less hair than Sinead O'Connor

My head is now shaved to a #0.

No, I didn't know there was a #0 either...but #0 it is.

This morning, I woke up and my bed was covered in short little hairs. Lots of them. After my bath, when I ran water through my hair, my bath was full of short little hairs and, when I patted my head, the towel was covered in short little hairs.

Then, when I looked at my shoulders, they were covered in short little hairs...that was pretty awful.

My hair may well have been shaved last week, but I did tell you I have a lot of hair...even though it is not long anymore.

So went over to Best Friend and she took out some clippers, took off the guards, slipped the lever down to #0 and did it.

Actually, should I be concerned that everyone I know owns clippers??? I don't own clippers!!! Why do you all own clippers???

Anyway, now I am shorter than Demi Moore in GI Jane; shorter than Natalie Portman in V for Vendetta and shorter than Britney in real life...even Sinead O'Connor has more hair than me.

The problem is I am getting a few small bald patches...and they look ridiculous. Everyone goes on about 'losing your hair during chemo', but what do you do in that 'in between' bit?

Look at me: most people complain about the 'in between' bit when they are growing their hair. Me? I am complaining about the 'in between' bit when I am losing mine.

I have also noted that I haven't got any hair growing anywhere else...not under my arms and not on my legs. The eyebrows are intact, but I have not had to touch them since the other week. Also, there are very few S&Cs left now. It has all happened very quickly...or perhaps I just haven't been noticing?

Best Friend's neighbour, a Nursey, came over to see how the #0 was going. She commented on what a nice shape head I had. Then she said 'you have such a pretty face...hasn't she got a pretty face?'...which had both these women attempting to scrape their hair back and look 'bald' to prove to me how ugly they would be with no hair and just how nice a baldy I make.

'You have no hair, but haven't you got a pretty face?'.

Best Friend says I look like someone you wouldn't fuck with. I don't reckon I would have fucked with Sinead O'Connor back in the day...having literally no hair does make you ummm, look hard.

Tomorrow I am going to the seaside for a couple of days...Drummond's brother is 40 and a bunch of us are heading to the coast to celebrate. Shall I go 'don't fuck with me' naked, or wear a bandana? I have yet to decide...

"We are all born bald, baby' - Telly Savalas