Wednesday, 31 March 2010

Black Wednesday


Today is my last full day without hair. Don't smirk. I can't help having a slightly Aspergers view of the world right now. The day and number counting soothes me. Sort of...
Anyway, see that picture of the very beautiful Natalie Portman above? That is me, that is (or it will be tomorrow). Unfortunately, Ollie the Hair might be an excellent hairdresser, and the hair might look like that, but not even Ollie the Hair can transform my face into hers...shame. I would have been prepared to give him a very big tip if he could have managed that.

This time next week I will be on my way to the West Wing...
I was in the supermarket yesterday buying a new washing up bowl to puke in. It occurred to me that some women actually choose to have short hair.

They don't have cancer. They aren't about to start chemotherapy. Yet they actually choose to have their hair cut short. It's a fashion/style statement and not a middle finger up to a regimen of hair-thieving chemotherapy.

I say this, but it doesn't actually help. I think I might be in full grief mode...I want to grieve for the loss of my hair. Losing my hair is going to make this all feel real for the first time. I know I know, I know the Scouse and House have told me it's real, I know I have told people I have cancer, I know I can feel Colin in situ. But this is the first thing which makes it feel real. And the first physical effect of having cancer. If I had chosen to opt for surgery first, I would have had hair but I would have had no right breast. That would have made it real for me. As it is, the loss of my hair is the first physical indication of cancer for me...
I am sure I am not entirely shallow. I am sure all women with cancer-having-chemo go through this angst. Don't they? Breast cancer doesn't just steal your tit/s, it steals your hair...it makes you feel like a fraudulent female...the insides might be female, but the outside surely ain't...
I don't want to make a fashion statement. I don't want fabulous and funky short hair. I don't want breast cancer, thank you very much.
I expect God is rolling around laughing his man tits off up there in Heaven. Bastard. Sick bastard...
Mind you, testicular cancer is pretty funny...
Quote of the Day: "Oh, my friend, it's not what they take away from you that counts - it's what you do with what you have left" Hubert Humphrey




Tuesday, 30 March 2010

Stop Press!

I got a 'phone call this afternoon.

A staff nurse wanted to let me know my first chemo infusion is next week and just to remind me about it.

Do they think I have forgotten all about it? That it slipped my mind? A little reminder in case I was thinking of double booking myself with something less important?

I am expecting the text message any day now: 'Just to remind you not to forget your chemotherapy appointment at the hospital on 07/04 @ 09.30'.



Quote of the Day: "A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort" Herm Albright

The West Wing and Project Mayhem

It has occurred to me that I would have welcomed a little look-see of the place-where-they-give-me-Domestos.

In fact, it has occurred to me that I really haven't been given that much information really. Not really. I know I said I want to be a little ignorant...but I think I am beginning to think not all ignorance is bliss.

I calculated that I have spoken to the healthcare professionals treating me (Scouse, House, nursey) for approximately 35 minutes in all...that's it. I don't include the phone call I made to Nursey to find out when Domestos kicks off. I initiated that.

35 minutes. Give or take.

That's how much preparation I have had and input from them. I wonder if this is going to be a learning-on-the-job experience? Because I can assure you I have the very bare bones of it so far...the diagnosis, the treatment, the drugs used and a run down tick list of side effects.

Consequently, I am wondering about the West Ward (the-special-place-where-they-give-cancer-people-Domestos). I call it the West Wing...I can remember that.

I mean, I know getting chemo is not like going to the Cowshed at Babbington House...it won't be spa treatments and candles...but it has got to be better than the waiting room of the Suite, hasn't it?

Will it be dark...sinster...like Stulag 17 where prisoners-of-Domestos secretly attempt to dig themselves out when the nurses aren't looking? Will it be bright and airy in an attempt to make us think we are not lab rats and X Files abductees? Do they give you Hello and OK! to read, like Ollie the Hair does in his salon? Will there be free coffee and tea and biscuits?

See. A little guided tour of my second home for the next 6 months would have been welcome...

Anxiety levels have risen a little. Sometimes I have to remind myself that I have cancer. I haven't forgotten exactly. It's just this dead-time is taking its toll on me. You can't entirely shop yourself out of forgetting, but I have given it a good go. I have become somewhat glib about it all...'yeah, I start chemo in a few weeks time', like it is going on holiday or starting a new job.

People ask, as people do...'how are you?'. I say 'I am fine thank you, how are you?'. Sometimes, it's people who know I have cancer...and I am fine for now. It's not a lie. But there is a little bit of me that wants to say the Tesco line 'No, I am not fucking ok, I have got cancer and I am going to be r-e-a-l-l-y fucking poorly because of it. How do you think I am?'. I don't, of course. I wouldn't. I am far to polite and it isn't their fault, is it?

I mean, what do you say to someone who is about to start chemo and associated shit in an attempt to save their life? 'Sorry'? Why are you 'sorry'? Is it your fault? Could you have prevented it? Made it go away? I must say, I would rather like someone to say 'hey this fucking shit is just so...shit' to me. That would be nice. But people are far too polite, aren't they? I will be interested to hear what they say when I am puking my guts up, bald and bloated...

This chemo thing. Perhaps I should think of it in terms of a new job. Or training for something...like a marathon or a triathlon...I do think chemo will be like a 6 month boxing match...8 rounds of pure chemical-driven fight club. You knock me down, chemo and I will get up again, bloodied but not out. I think. I don't know. Just how bad is this whole thing going to be???

I know I said I didn't like the language of cancer...the war thing. But the thought of Edward Norton and Brad Pitt is rather appealing...Fight Club.

This is your life and it's ending one minute at a time...

Monday, 29 March 2010

My last...

This is my last Monday with hair.

It occurred to me, as I woke up, that this is the last Monday I will wake up with my hair. Ridiculous. But I am ridiculous and a little autistic in some respects on lots of things (I tend to think 'this time last week/month/year' a lot. I like to order my life like that. Numbers are important).

I will probably wake up tomorrow and Wednesday and Thursday with this thought. And then, after Wednesday, I will wake and think 'this is my last suchandsuch a day before I start having chemo and my body is full of Domestos'.

It's not entirely healthy. But then again, I am not an entirely healthy person right now...

I have stayed away from reading anything by other cancer sufferers' experiences with chemo et al too. I accidentally read a small part of another blog about breast cancer. Although I found it very entertaining and hugely respected the woman, it scared me. I am obviously a little in denial, or perhaps it is just me not yet 'knowing' what it is all going to be like. She had an awful experience with chemo...and this is why I haven't read anything by sufferers...because I want to be ignorant. I want to go in to this thing with my eyes shut a little...I expect the worst, though hope for the best...and reading other peoples' experiences won't allow this.

I am obviously shit scared.

It's a big deal. Bravado and a sense of humour is not going to cover up the fact that I am going to be really poorly sometimes. I know I have written this, I do know it is going to happen, but I am truly not really ready for it. I am giving myself a hard time...I can't know until I get there...but I don't do poorly very well. I am a pretty healthy and robust woman. I am not ill often...and when I am puking, I want my mum (which is pointless, because she can't help me).

See, I am not all attitude and humour. I am human and fallible.

Let's keep our fingers crossed that I don't suffer as badly as this other woman did...because the thought of it gives me goosebumps and tummy pain. No amount of bravado and joking is going to stop me being poorly...

Actually, best friend has been the avid reader and researcher. She is a star and I trust her judgements...she has scoured the internet, forums and blogs for things of interest and come up with some gems for me....she has also given up smoking. I have tried to make up her before...and she has never wanted to. Anyone who wants to give up smoking has to want to stop smoking. Best friend didn't. Until she heard the words 'You have got cancer' come from the lips of Scouse. She said she doesn't want to hear those words directed at her in the future...and for it to be her fault because she has smoked most of her adult life. I am very proud of her, because I know how difficult it was...

...she has also made the completely crazy decision to jump out of an aeroplane for Macmillan Cancer and raise a few sheckels. Best friend is mad. My breast cancer has obviously made her worse...anyway, I fully support her and will help her fund raise. Best friend: good on you girl. I am double-proud of you.

On top of this, she wants to be my chemo-buddy. I imagine she got this term from an internet trawl. Is it like an HIV buddy? Or a childbirth buddy? Anyhow, she wants to be there when the drip goes in and take care of me...I wonder if she can understand how much this means to me?

She says it gets her out of going to work. I think this is a partial lie. I think it is because she is an amazing person and a very, very good friend. And she doesn't want to go to work sometimes...

I am triple-proud of her.

Off to live my last Monday without hair and my second-last Monday before chemo begins...

Sunday, 28 March 2010

Clocks going forward, Converse All Star and new phone...

The clocks went forward last night. This doesn't normally bother me, but this morning I feel tired and I cannot go back to sleep...

Yesterday I went shopping. Again. You probably don't believe I am not a shop-a-holic. I am generally not. But I want to get all of this stuff done before I start chemo/treatment...not sure if galivanting around a city centre will really be that important to me in a few weeks time.

First off, I have a new phone. A terrifying prospect, changing a mobile phone. I am a technophobe, I do not accept new technology easily. I fear change. So swapping from a straight phone with buttons to android technology and touch screens (or something like that) is a scary thing. It took a lot of time to make this decision...and grilling a rather nice Vodadevil employee for a lot of information...but believe it or not, I got a lovely young Polish woman who not only knew what she was talking about, but empathised with my fear of change. I apologise to Vodadevil. They actually kit their staff out in jeans and red polo shirts. Perhaps is it Fones4U that wear badly fitting GeorgefromAsdasuits.

I am now a proud owner of a SE Vivaz. It's like an iPhone, without the huge financial burden and I won't feel like throwing it out of the window when I try to use it (which other iPhone users I know have done...). I also got a 12 month contract. Look, I might not be here in 24 months, phone network providers!!!

New mobile phone and contract on a network that I can use at home. Done.

I also bought myself a pair of Converse All Star in black (of course). I have decided, once the hair comes off, that I might need to change what I wear a little...don't know why, just a bit of a feeling. I am going to look and feel very different over the next X months. I won't entirely be 'me'. The hair thing is a big deal. I will look very different and it is an enforced change. I therefore will slightly alter how I look clothes-wise. Jeans, Converse, buzz cut and a few punk t-shirts. If I am going to look like Sidney Vicious, I might as well dress like him. Ha...it's like being 16 again!

Slightly altered image. Done (but finished when Ollie the Hair does his thang on Thursday).

I have also bought a very expensive sonic toothbrush thing. It has a sensitive brushing mode. People tell me your teeth and gums can suffer during chemo and I need to be ultra-careful. I have therefore invested in a mouthcare system, which should help prevent problems. £120 worth of toothbrush. Feck me...lucky I got it half price in a special offer!

Toothbrush. Done.

New comfy M&S bras. Done.

Various chemo-sweatshirts and associated items. Done.

Easter eggs for all, plus a few birthday presents-for-godchildren-with-birthdays-coming-up-over-the-next-few-months. Done.

I am organised little cancer patient...




Quote of the day: "Cancer is a word, not a sentence" - John Diamond

Saturday, 27 March 2010

The Devil and mobile phones...

Another cool thing has happened. Not as cool as Drummond's extraordinary abilities for cadging guest+1 tickets for BRMC, but cool all the same.

I moved here in the Fall of 09. My mobile phone network has always served me well...until I moved here. Now it is like a small nun on a penguin shoot...it tends to hide itself a lot...from a signal. I have found this mildy irritating really, but still had 6 months or so left on the contract...

This is not really very helpful when I need a mobile phone to ring for emergency care at any point. Also, I want to lay in me bed and receive a signal, a call or perhaps make one when I feel shit.

Currently, my phone will not really allow this 'luxury'.

So I decided to do something about it, expecting to pay a large penalty for terminating my contract...my alternative network provider has to be Vodadevil...their HQ is just up the road from here, so guaranteed a decent signal (how else would their employees rack up their freebie bills?).

I rang my customer services team. I am on 3 network. I won't have a word said against them actually. They may not be able to provide a decent signal out here in rural land, but I have never had a problem before and I find their customer services, out in Mumbai, absolutely brilliant.

I explained my problem, playing the 'I have got the cancer' card very gently and, hey presto, I am out of the contract with no penalty. What other network would be so understanding, efficient and helpful?

So I am off to Vodadevil, with my PAC code and carte blanche on a new phone. Decisions to be made...none of this 24 month contract for me! I might be dead by then! I shall have to play my 'I have got the cancer' card and see what I can get...somehow, I don't imagine Vodadevil and their GeorgefromAsda suit wearing sales staff will fall for that one*. Not like 3...but you know me, I'll give it a go.

A friend and I discussed my blog from yesterday. He remarked I was exhibiting a certain amount of 'feistiness'. I think I was just being rather bolshie myself...he thinks I ought to make an effort and use said 'feistiness' to publicise the statistics on cancer sufferers and financial hardship. It got me to thinking...would a cancer charity like someone like me to come on board and be a spokesperson? Could I be a 'professional' cancer sufferer?!? Be open and honest about it all, draw attention to others' plights all for the greater good? I have actually done something rather similar, and successfully, for another disease...

Righto, off to harrass a Vodadevil employee...




* Apologies to Vodaphone staff. I am sure you also wear nice things that fit well.

Friday, 26 March 2010

Newsflash!

Don't normally post twice in a day.

However, something rather monumental has just happened. The rockstar that is my friend Drummond has come through.

He's picked up the gauntlet that was a guest list + 1 for the sold out Black Rebel Motorcycle Club London gig and he ran with it (although, as I always say, you shouldn't run unless the coppers are chasing you...).

Drummond has scored guest list +1 for for the gig.

I am amazed. Frankly amazed. Not at Drummond. He is a sorted geezer, but at the poor sucker who fell for his stuff about 'my friend has cancer...'.

No, seriously, I am sure he didn't resort to that...

Anyway, this is good. One downside is it is 8 days after my first Domestos infusion. Will I be sick? Will I be poorly? I do know my white blood cell count will be on the floor at this point (7-10 days after an infusion is the best time to pick up an infection apparently).

Oh well...at least it will be from a likeminded musically astute person...I wouldn't want to catch a cold and die from someone who liked the X-Factor...nope, mine will come from someone with a bit of musical taste.

I shall judge my wellbeing on the morning of the gig. I am quite sure Drummond, knowing him as I do, could easily find some big-breasted blonde to take with him instead of me if I am chemo-sick.

http://www.youtube.com/watch?v=l_yU2Nr2YH8

http://www.youtube.com/watch?v=xV-nOuiowr0&feature=related

http://www.youtube.com/watch?v=ot6FFSb5SzY&feature=related

Medical Exemption

Hey, I got my Medical Exemption card through the post. It means I get free scrips for life now...even if I am OK post-treatment. Not a penny to pay towards anything I need ever the next X-amount of years.

It seems wrong somehow. I mean I know having cancer treatment is expensive for the NHS...must cost tens of thousands. Must. At least. My Gold Standard Domestos costs £162 per 40mg/ml. That's a whole lot of cancer-killing money...but I feel a fraud. I am not poor. I earn money. I should pay for the prescriptions from the GP for my cancer mouthwash and anti-sickness pills. I could at least pay for a Pre-Payment Card (costs just over a 100 big ones for the whole year). I have done this before...

...but for some reason, they think all cancer patients should get all scrips free forever. Even if what is prescribed has nothing to do with cancer.

No wonder the NHS is broke/underfunded. Seems wrong. I don't know.

I don't feel blessed here. I feel like a thief!!!

I am not saying I am not grateful. Thank you. And I know there ar plenty of people out there who can't afford their scrips...cancer has a way of fecking up your life in ways you and I can't comprehend. I don't mean the threat to your life...or the looking and feeling shit bit. I mean some people have large mortgages/pensions to pay into/children/loans/overdrafts. They may work hard for a decent company or be self-employed...but most employers pay Statutory Sick Pay after a certain amount if time poorly. This is less than 80 quid a week. How do you live on that???

According to research, 1 in 17 cancer sufferers lose their homes. 1 in 6 have dificulty in keeping up their mortgage payments. This translates into 45000 people with cancer every year struggling to keep a roof over their heads...

Think about their families. Imagine if you had kids, you're having treatment for a life threatening illness and you don't know how you are going to keep a roof over their heads?

This sucks. Having cancer is more than just looking and feeling shit people. It costs people more than that.

I am a lucky cancer person. I am not in this position. I am very grateful for this...I have a very decent employer! Obviously, many people are not this lucky. And my free-scrips-for-life deal just rubs that in a little...

I am feeling a little 'aggressive' this morning. Not in a 'physical-beat-people-up' way. In the 'this-whole-cancer-thing-sucks' way. And not for me personally, but for my 'fellows-in-wigs-and-scarves' way.

I mean, Peter Cook had it down. If you were God, would you screw up people's lives by inventing cancer??? There have to be better ways of screwing up people's lives my man, surely?

It just makes you think, doesn't it? Forget the physical effects of cancer, have a think about the financial aspects of it. Imagine your situation if it happened to you. Would you lose your home? Could you manage to survive on benefits? (Look, I know lots of people live on benefits...I am being slighly blinkered here...).

I shall put my money-for-having-my-long-hair-cut into the Macmillan Cancer Charity box. It won't be much (less than a week's SSP), but I know this charity helps people who aren't as fortunate as me.

Sorry for the negativity and the rant. Like I said, feeling agressive today and I bet Kylie didn't have to worry about money. See, another thing she and I have in common.

Thursday, 25 March 2010

Now for the science bit...

As I have mentioned before, I have felt a little like a fraud; got the diagnosis, but no sign of treatment on the near horizon.

I decided to give the breast nurse a ring yesterday and see if they had forgotten all about me.

I think my dealings with the healthcare professionals over the last few weeks have been rather fast and furious. I think I spent 12 minutes with Scouse the day he told me Colin and Malcom were real and alive...less with the consultant oncologist (hereby known as House).

I suppose, without really trying, I have picked up a lot of information. I am a reasonably intelligent person and I have always picked up medical stuff quickly (this is due to a former professional life where I flirted with pharmas, as well as working with consultants in many fields). A little inofrmation is a dangerous thing...I realised that I haven't been told a few things...

First off, I have attained the status of Grade 2 Ductal Invasive Breast Cancer person. This means my tumour is small (less than 50mm..mine is 15mm) and I have lymph involvement. It also means that those naughty little unionised cancer cells contained within Colin can get pretty mobile and bring other cells in other areas to the party. So far Malcom has signed up, although I do not know, as yet, how many. My ultrasound only showed one enlarged and dodgy cell...they might want to cut the whole Malcom collective out, or just a few.

No news is good news. Colin et al have not got very far. My ultrasound, lung and bone staging investigations have all proven negative...or so the breast care nurse says...she wasn't allowed to tell me over the 'phone, but said 'they would have contacted you by now if there was a problem'. Well, the tests were 8 days ago...the pathology and reports are in and no one has contacted me. I take this as I am a-ok. Would have been nice for them to let me know...whatever.

I am ER+ / PR+.

This is where it gets a little more complicated...breast cancer cells can be swayed by the attentions of estrogen (they use the Yank spelling), which all women produce in their ovaries. Approximately 80% of all breast cancer is caused by these little estrogen party-goers. Mine too...I am pretty normal, in a cancerous kind of way. I am a perfect A+ in my estrogen marker test as I scored 8/8 ....daddy would be proud.

I also scored 6/8 for progesterone receptors, making me PR+. Well, that is definately a B+.

The upside of all of this is ER+/PR+ women are much less likely to croak. There are lots of clinical research papers on all of this. I can use special drugs to knock out the estrogen in my body post-treatment. Not sure if I like the idea of swallowing hormone treatment therapy pills until 2015+, but there you go. Life sucks sometimes.

I have also been given a start date for my first Domestos infusion. 7th April. That's a Wednesday and I will be infused every 3rd Wednesday after this...for 8 cycles. That's 24 weeks. There goes my summer...

No one told me this last week. I asked for a date and they said 'we'll call you'. They didn't. If I hadn't rung I wouldn't have turned up. You'd think they'd let you know...I am going to have to keep tabs on this. No one ever said the NHS was perfect....

House also told me that I am getting a chemo drug called Docetaxel. This is, apparently, the 'gold standard' of Domestos. Not everyone gets it and I am a lucky little lady. I imagine they have singled me out for this due to my age...the treatment book gets thrown at me and I might still have a few tax-paying years left in me yet. Mind you, it might give me more in common with our Kylie. I bet she got Gold Standard drugs too...

How do I feel? Funnily enough, a bit down in the dumps about it all today. I am bored of it a little, or perhaps the reality has hit home. There is no fear or anxiety...just that 'oh come on then, get on with it and make me look and feel like shit already people'. I am tired too...busy with real life.

Reality. I imagine that is it. I have facts and details. I have a date. I can see 2010 stretched out ahead of me and it contains needles, puke, fatigue and an Orla Keily bag.

I have made an appointment with Ollie the Hair. He is giving me a Natalie Portman buzz cut next week. My middle finger is still firmly up to it all...I need to pace myself though...if I am tired of it all now, imagine a whole year of this.

There is only one thing for it: a raw broccoli shake from my 'Nutrition for Chemotherapy Book'. That'll do it...

Tuesday, 23 March 2010

Get cancer - go shopping



Oh yes, I have discovered 'cancer shopping'.

I am not a complete female shopaholic...I mean, I will buy stuff now and then, but I am not a 'window shopper' nor do I have credit card debts or covet very much out there.

But this cancer thing? You can buy 'stuff'!

So far, I have bought:




  • A bag-for-chemo (above) This is Orla Keily: big enough to put a book/magazine and a bottle of water and, as it is made of oilcloth, I can wipe it clean if I puke up on it in the RB cancer suite

  • A collection of scarves: so far, two Missoni; two Moschino; one Prada and a two straight black cotton non-designer (for when I feel particularly rough...no point cleaning puke off silk)

  • A book called 'Nutrition for Chemotherapy'...I shall broccoli-shake myself to feeling less rough

  • A book called 'Chemotherapy - A survivor's Guide'...oh yes, it will guide me through to survival.

  • A collection of large, comfortable sweatshirts...over jeans, over leggings...for those days when only sloppy will do

My bro (remember? The one from fatherlet #1) is a registered hypnotherapist, who just happens to know a lot about self-hypnosis and relaxation during chemo. He sent me a CD with some very persuasive academic clinical research studies on this and survival rates. There is something to it, I am sure...however, I am not so sure whether I am a perfect candidate for hypnosis. I question authority, I am not a pushover. Those who are most likely to conform are most likely to perform positively under hypnosis. Open-mindedness, Plaingoldband, open-mindedness...I will give it a go. Once I feel like a bona fide cancer sufferer that is...



...because I am still feeling like a fraud. I mean they have told me I have breast cancer. Colin is real, Malcom is real. But I am still no clearer on when I start the treatment...like I said yesterday, I am in Purgatory. Shadowland. The place between diagnosis and treatment. I am not saying this is awful...I didn't feel awful/anxious/scared between biospy and pathology. I don't now.

But God damn it, I have got the chemo-bag, the scarves and the books. I am chemo-savvy and chemo-ready.

Let the fun and games begin. Before I get bored of all this...and my bag collects dust.



Monday, 22 March 2010

Hair obsession

I have an obsession with my hair.

I seem to think about it a lot...what's going to happen to it, what I am going to do with it and how I am going to deal with it.

Am I that shallow and self-obsessed?

I have nice hair. I have said this before. I have had a lot of different styles over the years and probably most colours of the rainbow. I have even had dreads.

It has been very long for many, many years now. Great hair, strong, glossy and a lot of it. Hairdressers love it.

So I have examined why I can't get it out of my head these past weeks since Colin.

I am come up with this: losing my hair is an obvious side effect of chemo. It's the one most non-cancerous people would come up with if stopped in the street in a straw pole and asked 'what is the most common side effect of chemotherapy'.

It's actually the one I come up with too these days.

And I think it is because I just don't know how else I might suffer. Systemic drugs are strange things...take two people with the same disease/condition; give them the same drugs at the same level...one will suffer absolutely no side effects at all and the other will be as sick as a parrot...yet they are on the same drugs with the same outcomes.

I might bounce through 6 months chemo with little suffering; I might feel a bit rough a few days each cycle or I might be on my last legs the whole time. I just don't know and won't know 'til those Domestos infusions start a-coming.

I know my white blood cells will take a hammering; I know I will take the anti-sickness as soon as they hand them over to prevent nausea and vomiting; I know I am risk of infection; I know I will probably be fatigued sometimes/all the time. I know there is a very, very good chance I will lose some or most of my hair.

And I can imagine losing my hair right now. It is real and it is tangible in my mind. I can envisage hair falling out in patches, being on my pillow in the morning.

Another reason is this: I am living in No-Mans Land. I am in that shadowy place where I know I have cancer, but I haven't started the treatment for it yet...I have seen Colin on a mammogram, I can feel him in my breast but I haven't started the treatment.

I am waiting....waiting...waiting.

In fact, the RB haven't even told me what day my first chemo is yet. Cancer for nearly 3 weeks and no date for chemo commencement (note to self: they may have forgotten about me; give 'em a ring at the end of the week).

I feel quite strongly about this hair thing...I mean I get the psycho-emotional aspects of breast cancer for a woman...the loss of her femininity via breast and hair...the very things which make us female to the physical world (I still have a big ass though)...

Friends say, hell the breast nurse said 'don't shave your head/wait and see/wear the ice cap/what you got to lose?'.

All I have to lose is my hair, people. Feck feminine markers in the physical world. Feck watching it fall off if the ice cap doesn't work. Feck chemotherapy.

Oh Chemotherapy! Up Yours! (I doff my cap to Poly Styrene of the Slits circa 1977 here).

You ain't going to take my hair, my inner-bleaching little systemic cancer treatment, I will take my hair.

That's it. It's a middle finger up to chemotherapy. I know it is my friend really...I know it doesn't really want to kill me, just Colin and Malcom et al. But I am going to take control of this....Demi Moore in GI Jane; Natalie Portman in V for Vendetta; Britney Spears in real life...

The decision is made. I shall get it done next week. I'd like to think I am going to shock my friends, but as they all read this they'll already know...the downside to putting your thoughts and future actions on a blog for everyone to read!

Just call me Jean Luc Picard from now on: 'Make it so' Ollie the Hairdresser....

Sunday, 21 March 2010

Do woodlice get cancer?

This morning I have had a pre-chemo Spring clean of my abode. I am not a slut around the house, not at all. But every so often, I like to have a proper clean up...more than the general tidy-up I have on a daily basis...I move furniture, wash the utility room floor, sort out the pile of paerwork that wants attention...that sort of thing.

Having a clean and tidy living area makes my mind settle. I feel whole, clean, healthy and sorted. If only life really was that simple...I could spring clean my health back to before-Colin normal with the hoover and a J-cloth.

Anyway, I was hoovering under one of my kilim rugs (I told you, a proper clean) and I saw a woodlouse. Not sure where he came from and how long he had been there...but he was a dead woodlouse.

And it got me to thinking, do woodlice get cancer? Do they have teeny tiny Colins forming under their armour plating? And what about squirrels? And birds? Duckbilledplatypusses (is that the plural?).

I did ethics at university as part of a set of wild courses in Philosophy...in the quest to widen the academic horizons of the undergraduate minds, my university postively encouraged students to take a course out of their area. I did Literature. So I chose a few wild courses in philosophy...and did a year of Ethics. I learnt about the animal world, particularly chimps and apes...all about Rousseau's noble savage V Hobbes' Leviathan and all that shit...

...the animal world is actually very ordered. It's heirarchical structures, familial groups and politics makes the human world look rather weak really...those chimps and birds know how to make things work. Simply and effectively.

Do they know when one of their own gets cancer? Do they nurse them to their deaths or do they mercy kill them? Elephants take themselves off when they know the time is right...bit like me really, if it ever comes to that.

Oh the spring cleaning world of plaingoldband today takes me back to seminars with bearded, kipper-tye wearing Professor Norman and Dr Cherry...

I have a day at home today, thus the cleaning. I feel like I haven't had a moment to myself since Colin got diagnosed. I enjoy an hour in bed with a coffee and a novel, followed by another coffee and a croissant and a clean up. This afternoon I have a backlog of Sky+ recorded crime series to catch up on...craftily did some food shopping yesterday so I don't have to step out of the house today, let alone my post code area.

My world, for today, is ordered, clean and I feel whole. I have had a grope, just to make sure Colin is still there (he is, as are the bruises from all the biopsies I endured 2 weeks ago). Colin and Malcom can go to hell today. Today is my day...no cancer, no doctors, no 'a positive attitude will hold you in good stead' lines. Today is all mine...

...although I might ring Drummond and see how the BRMC guest list quest is going.

Saturday, 20 March 2010

Doctors, Dentists and Oliver Twist

I have been a busy 'getting-ready-for'chemo' bee the last few days.

I am not sure why I am planning everything as if a medical armageddon is coming down upon me, but I am making sure nothing can go wrong with any other part of my self/me/life.

I was advised to see the dentist before it all kicks off...your teeth and gums can be affected and doing any work on them, particularly when your immune system is compromised, can be difficult.

Teeth all ok, but a wisdom tooth at the back has a tiny hole...dentist can't fill it really because of its position (which is why it has a tiny hole...dificult to clean). Dentist is loathe to pull it out though, which she would normally do, because it is a very large tooth with a big root...she thinks it would be dodgy so near chemo-infusions. I am under strict instruction to brush it everyday and make sure it doesn't get infected...and she will do a temporary filling. Thank god for private dental insurance...dentists cost more than breast consultants when you go privately!

Met Dr Lucy, my new GP. Dumbfounded her with my 'hello, I am a new patient and I wanted to touch base with you....me, I am as healthy as an ox but I have just been diagnosed with breast cancer'. She sat there and said 'but you have breast cancer and you are so matter of fact about it'...as if I was 'wrong'.

This concerns me. Am I being 'matter of fact' about it? Am I? Should I be concerned more? I know I have sort of asked this question before, but I am beginning to get worried because people say I am so brave/strong/inspirational/blah/blah, yet I feel perfectly normal. I note, and I must get used to, the 'a positive attitude will hold you in good stread' line. I hear it all the time now...I suppose I ought to expect it, what other things can people say to someone who has cancer?

I seem to spend as much time consoling and bolstering other people as I do preparing for medical armageddon these days...

Anyway, Dr Lucy is now Team Plaingoldband. 'I am here' she said, 'if you don't feel ok about it'.

Cheers, Dr Lucy. I am sure we will meet again...

Last night I went to see some young friends performing Oliver! Magical, how talented children are...how full of life and energy. All the more poignant really...I once played the Dodger in Oliver! as a kid...and it makes me think how we never know what's around the corner. Again, I am doing one of those 'if I could go back' things...was this mapped out for me when I was a kid? If I had been genome mapped as a child, would this have been there at the age of 41? Hey, anyone see the actress Glenn Close is the first woman to have her genome mapped to check her medical status?

Anyway, it's funny how things go. I wonder if this nostalgia-kicking thinking-back thing is normal? Did Kylie ever wonder, when she was playing Charlene and banging Jason Donovan, if her breast lump was already there, lurking about ready to surprise her in her late 30s and feck up her life for a bit. Did she wish she had done a Glenn Close? Better the devil you know? Give me just a little more time? You should be so lucky, Kylie...

Thursday, 18 March 2010

Wills, Guinness and Kilburn

Yesterday my father came to visit me. He is a semi-retired laywer. This has its uses, not least free legal advice. Bless him, he had made me a new will and we spent an hour going through it.

Basically, pillarboxredheadedgoddess gets it all...enough for a few more vintage Marc Jacobs handbags at the very least.

I also discussed a 'living will'. This brought a conversation up which I was slighly 'dreading' having with the father...you see, cancer is not going to kill me. Not ever. Because if Colin, Malcom and any other rogue cells decide to make a return visit and mean it this time, I will not allow them to kill me. I will kill me.

Thus. we had a long and philosophical discussion on the legalities, ethics and morals of Dignitas and Nembutal. He was far more understanding than I gave him credit for...and he had done his homework too...not just on the legal issues involved, but on the actual physical dynamics of painless and dignified death.

I do not wish to do it myself...purely because I do not wish to put anyone in the position of having to 'clear up' after me. One of the positive aspects of the whole Dignitas route is it is rather like buying a package holiday...everything can be taken care of...right down to my return flight home in a little cardboard box. Father says Dignitas is a rip off...far too expensive and why don't I become a dignified death travel agent in my own right...and organise it all myself.

Did I ever mention my father is rather mean with money?

Anyway, living will is done...to cover my own back and those of any docs who feel the desire to keep me going past my sell-by-date. It's important, you know, to have it all signed, sealed and delivered. Amazing how much grief can be prevented by being savvy now.

I have a very strong opinions on terminal illness and dignified death. I believe an individual should have the right, if they are of sound mind and not at the mercy of a thieving relative, to choose the manner, time and place of their demise. I have always had this belief, long before Colin. Terry Pratchett is absolutely right when he said 'I hope I can jump before I am pushed'.

Not that I am in need of it any time soon, you understand. I think you have a pretty good measure of the type of person I am by now...but if I am unable to mix the drugs with the juice and swallow it without aid, then I will have left it too late. Me, I will go out when the going is good.

Which brings me to another 'odd' thing about me. I want a 'living funeral'. I bloody well want to be at it and not in some box. I shall have a bloody good knees up, bringing all my friends together so we can party like it's 1999. The drinks and sausage rolls are on me, I'll get a band and a DJ in and, I think, I might even make it themed dress...it will be a blast. And I can say goodbye to one and all properly, with love and laughs.

How lucky I would be if this is the way it ends. How many people get to have a party before they shuffle off this mortal coil? A chance to laugh and say goodbye to all those they love? I reckon it sounds great...

So there you go. I have written down something many might find odd and even distasteful, but it had to be said and had to be dealt with. And I have dealt with it. Now I can move forward with the comfort of knowing all my chattels will go to pillarboxredheadedgoddess, the party is organised if I need it and I can buy the drugs I need from the local vet....

Last night, I found myself in Kilburn, with Drummond, on the guest list to see a band called Spectrum. Well, Spectrum is technically one bloke...and he used to be a band I saw a few times as PVC-wearing goth girl when I was young. Drummond commented on how funny things are...how, 25 years ago we watched this bloke as teenagers and who would have thought, back then, that he and I would be supping guinness watching him again and that I would have cancer.

I like Drummond. He thinks like me....

I have given Drummond a mission. It is probably impossible. Playing my 'I have got cancer' card strongly, I have commissioned him to get us on the guest list for the London date of Black Rebel Motorcycle Club's upcoming tour. "Drummond" I said, "I have got cancer and this might be the last time I get to see BRMC...come on, I am sure you can manage a guest +1 for me"

You see, I have done alright on the freebies so far...I reckon I can get a few more yet and guest list for BRMC sounds like a plan.

Wednesday, 17 March 2010

Domestos, positive attitudes and being nice

Right. Let's get down to business here. I am as serious as cancer when I tell you things have got to change...

It has been pointed out to me that I am 'odd'. I know, I was 'odd' before TDIFOCWC. But talking with a friend last night made me realise I need to rein-in my 'oddness'. Just a little. I am not going to change my core glib-irreverent-taking the piss self too much, but I am going to be less 'odd' when dealing with some people. Because not everyone is ok with cancer.

I have already said I get some kind of satisfaction out of telling people I have cancer...I am up-front and honest and not at all full-of-dread. I am examining this behaviour. I am sure I unconsiously get a kick out of it...just as I did dying my hair blue, getting my nose pierced and and wearing rubber dresses (a long time ago,I might add...my obvious newfound 'affluent' status which is why-I-have-breast cancer inhibits such behaviour from here on in). I like to provoke in my real life and always have. Don't get me wrong, I am ultra polite and you can take me to meet your mother and I won't offend, but I like a good argument for argument's sake...do not confuse my 'oddness' for not giving as arse about social norms. I care. A lot.

Anyway, what I am trying to say is the all-new cancer-stricken plaingoldband has learnt a valuable life lesson lately. Think about your audience, woman. Not everyone is ok with having cancer and your cancer jokes have their time and place. And this place is not the RB Cancer Suite...

Believe me, I haven't screwed up yet...raised some eyebrows maybe (if they haven't come off due to chemotherapy)...but I have done nothing more yet than mildly 'shock' and provoke the now statutory "well you have a positive attitude and that is good..." line.

Let me enlighten you with my knowledge of chemotherapy thus far:

It's not so bad.

Well, it's not something I am glad I am having...but it's not as bad as I originally envisaged.

Not everyone is really poorly and has to take to their beds for 6 months. The days of constant sickness, nausea and permanent intravenous antibiotic drips are long gone. Chemotherapy has gone all modern and user-friendly.

These are the general side effects. Next to them, in brackets, is what you do to 'prevent' them:

  • Nausea and vomiting (you start taking very effective anti-sickness pills before you start your cycles to effectively prevent it from occuring at all)
  • Fatigue (sleep...as much as you feel you need to)
  • Hair loss (ice cap...wigs-on-the-NHS or perhaps, if you are very lucky, it doesn't even happen at all)
  • Infections due to the crushing of the white blood cells (constant monitoring, 24 hour oncologist on call and, of course, my 'don't leave home without it' credit card-sized medical alert card
  • Mouth ulcers (very effective antibiotic mouth wash)
  • Gritty eyes due to loss of eyelashes (eyedrops)

See, a problem arises and there is a solution. I see cancer like that...it's a problem, let's work on the solution.

Now, I am very aware that the cocktail of drugs (FYI flourouracil, epirubicin and cyclophosphomide, known as FEC) can easily be compared to Domestos (because it kills all know things...dead), but I am not shaking in fear at the thought of being bleached from the inside out. I know there are going to bad days...days when I feel shit and wish I was um, dead. But I am hoping that there will be days when I feel OK and can be 'normal'....well 'normal' in a plaingoldband-odd way.

In fact, there is a little bit of me that is positively 'excited' by all of this (as I said...'odd'). Again, not in the normal sense of the word but in a 'well come on then, bring it on and let's get started' way. It's going to be a challenge. It's going to be hard-going and a bit grim sometimes...but whether I want it or not, it's going to happen (generally, there are only two things definate in this life: birth and death. If I wish to cheat the latter, chemo makes it three things)*.

Hey, how many chemo patients does it take to change a light bulb? None: they're too weak to climb the ladder....

* I do not include taxes in this line. Taxes can be avoided, just ask Lord Ashcroft....




Tuesday, 16 March 2010

All the World's a Stage (ing)

Today was my big 'staging day'. That is when they find out whether Colin and Malcom have gone forth and multiplied and made some other cells join their cancer union. I am Type 2 breast cancer, but 'staging' labels how far those scamps have got around my body.

This entailed ultrasound of all abdominal organs, lung x-ray, ECG and a full bone scan.

I also met my consultant oncologist to discuss chemotherapy. I had been 'warned' that said consultant oncologist could be rather, um, 'unfriendly'. I rather liked her myself.

Anyway, I have an unofficial 'all clear' on all my organs, but have to wait for the other test results. I am not concerned. Scouse said the chances of this was minimal. I believe him.

Actually, I had a blast today. I enjoyed myself. Don't laugh, but it was all rather exciting. I mean, how many of you have seen your own spleen or seen a full scanned picture of your skeleton? I have. How many of you know what a radioactive isotope is and how it works in a gamma x-ray machine? I do. And my heart is as strong as an ox...

The one downer was the RB Cancer Suite. This was fucking depressing. Not because of the 'cancer' bit, but because it was rather drab and full of old people. I mean really old people. Me and best friend were the youngest there by at least 30 years. And they were miserable looking. Not a lot of laughs to be had in the RB Cancer Suite, I can tell you. And don't castigate me here for being insensitive but lighten up old people, you are whole lot older than me and have had far more opportunities to actually 'live' by dint of your old age...and I am still smiling*

I was also most excited to be given my own credit card-sized 'Medical Alert' card to put in my wallet. This is to inform people of my very poorly cancer/chemotherapy status if I collapse in Waitrose and need urgent medical assistance (it's true, there's some things money can't buy...for everything else there is my medical alert card). I was also chuffed with my 'access all areas' free parking pass to the hospital car park. Oh, and I am over the moon about not having to pay for prescriptions again, ever, as I got an exemption form.

See, I got free stuff. I knew there had to be a upside to having cancer...



* I know, I know...cancer is not all high jinks and japes...forgive me. It is not for me to judge how people cope with their illness and treatment. It was just soooo depressing, if only one of them had smiled just once...

Monday, 15 March 2010

Q&A

I have been doing this blog for about a week or so now and I have had quite a few messages from people asking me 'stuff'. These questions are thought-provoking. It helps, you know, thinking and talking about cancer and all the associated 'stuff' around it. It helps me get perspective...it gets it all straight in my head. Moreover, I am glad people feel they can ask me questions, that the dreaded 'C-word' hasn't made them all polite and that they can ask...

Question: Do you feel poorly?

Um, no. Fit as a butcher's dog actually. I was on a fitness kick up until TDIFOCWC (the day I found out Colin was cancerous). I was cycling 20km, rowing 5km and lifting weights 6 times a week. My heart rate sat at a lovely 145bpm at level 14 on the bike on 'hill'. I am hoping this is a positive thing on two counts: 1. going into chemo fit and 'healthy' will be helpful to my overall wellbeing and 2. at no point during cycling/rowing/running/lifting weight did I cough my guts up or get out of breath...therefore Malcom hasn't done his special kind of cancer magic in my lungs...to boot, I am a generally healthy person over all. I haven't had a cold in over 2 years. I have cancer, but no siree, I haven't been ill for years.

Are you afraid of dying?

I must point out this question was part of a larger convo and wasn't as insensitive as it sounds!

Short answer. No. And I do plan on being around a bit longer yet. But no, death holds no real fear for me. It's as natural as living. Moreover, if worst case scenario happened, I would be lucky enough to have time to plan, time to say goodbye and time to have a fucking great party before I shuffled off this mortal coil. Few people have this privilege...people die suddenly all the time...car crash, murder, auto-erotic asphyxiation...those guys don't get to say goodbye (although I imagine at least auto-erotic asphyxiation allows you to go out with a smile...).

My mother died in her late 40s and my sister died at 30ish. Both women were alcoholics and both died from alcohol-related conditions. Neither admitted to people that they had a drinking problem, not even to their doctors, not even when they were flat out on a hospital bed dying a horrible death as their whiskey-pickled organs shut down.

You see, I pitied my mother and sister, not for being dead, but for being so godamn 'dishonest' with themselves. Did they lay dying feeling shit-scared but not being able to talk to anyone about their fear because they couldn't be honest? Their blind denial of their problems cut them off from the real world and all it had to offer. I don't mean they brought dying on themselves by being alcoholics...they drank for a reason and that was probably not their 'fault', but they died alone, dishonest and pitifully.

I have been utterly honest with everyone around me and with myself...it's not my fault I have breast cancer, but I do not need people's pity. I am upfront, full on and alive. Right up to the end, which will more than likely be enough years to see the England football team lose at least 4 more World Cups...

Wig or scarf?

Ha, the contentious question! Undecided on what to do about my tresses. I know I said I was going to go for a #1 all over if I needed chemo, just like Elvis circa '58...but I have since found out that there is a small chance I might keep said lustrous locks...there is some kind of ice-cap you can put on for 2 hours after chemo, which gives you brain-freeze like a ice-lolly, but prevents chemical-infused blood from reaching the hair folllicle and killing it. People don't always lose their hair when they have chemo.

I am undecided on the ice-cap. I do not want to wake up with hair on my pillow or walk down the street with hair dropping to the pavement behind me or have it come out in handfuls as I put a clip in. No way. I would rather just do an Elvis before this happens and be done with it.

But no, no wig. I don't want to wear a wig. If the hair comes off (and the eyebrows, the Brazilian and the eyelashes) I am doing the scarf, my friends. I have cancer, I have no hair and I ain't hiding it...well, under a scarf I will be. And it won't be just some scarf from down-the-Saturday-market. Nope, only Prada, Hermes and Pucci is sitting on this hairless head. It's the rule. It's the law-according-to-Plaingoldband and it is golden. I bought a cheeky little Moschino in readiness when I bought pillarboxredheadedgoddess her Marc Jacobs yesterday...I will be Moschino-ed up and ready for action by the time my first chemo starts.

Are you normal?

This has been asked of me a few times, both online and in real life. And also before TDIFOCWC I might add because I am not your 'normal' kinda gal...but people are unsure that I am holding it together because, well, I seem so 'normal' right now. I am not crying, shaking, wringing my hands or suddenly joining the local church and praying to God, Jesus and all the angels for mercy and love.

I just don't feel the need. I said this last week. I don't feel afraid of this at all. I am somewhat annoyed (hair falling out, looking and feeling shit, my holiday plans being scuppered...I am so shallow and selfish) and I am somewhat bemused by it all. I sometimes 'forget', when people are talking about other-things-not-connected-to-cancer that I have Colin. Then I remember and it is 'oh yeah, I have got cancer and I have to have chemo blah blah', but I am not filled with dread.

Does this make me abnormal then? I, luckily, have not really known anyone with cancer, but I know most people have. Ask yourself this: were they a right bloody state or did they quietly and stoically get on 'with' it, with dignity and no great loss of self-respect. I bet they did. I would put money on it...because human beings are amazing given the right set of circumstances...they have hidden reserves of strength and dignity which they can call on in a crisis. I reckon this is a minor crisis on the scale of life crises...and I am feeling more 'normal' now than I have done in a long time...

I am yet unsure of how deep my well of strength and dignity is, but I reckon it'll be deep enough for a bit yet...

Note to Blog followers: remind me this blog entry when I am puking my guts up, feeling shit and feeling sorry for myself as chemo progresses...it might just help me straighten myself out and regain my self-respect and dignity...

Sunday, 14 March 2010

The M25, vintage handbags and my daughter, the goddess.

OK, I over-estimated the miles I though I would tot up this weekend. I drove 377 not 400.

I wondered, whilst driving the motorways of south east England, if the desire to shout at other motorists, specifically the ones in my lane, something along the lines of the Tesco yell 'Get out of my, I have got the cancer' would be all-consuming.

Normally, I am in a rush to get everywhere. I often time myself on familiar roadtrips to see if I can beat the time I did before...

...thus the M4, the M25 and the A21 (who built that road? Did they lose interest in it once they got to Tonbridge and just left it as a rural B-road with one lane???)are normally akin to some Formula 1 test track for me. Don't get me wrong, I do drive faster than 70mph, but I am no Michael Schumacher cutting people up and off.

But yesterday morning, I pootled at 70. In no rush at all. Not a care in the world.

Which begs the question: if my odds of a long life have been considerably shortened by having cancer, shouldn't I be rushing about more and trying to fit in as much as possible just in case my life is, um, considerably shorter?

I don't feel like this at all. I seem to have slowed right down. I am looking more. I am listening more. I mean, I am still talking a lot (I talk...a lot), but I have changed. I am taking notice of life going on around me...I thought it was possible I might think 'Hey, you feckers out there...stop living/working/breathing because I have got cancer and the world needs to stop'. And I don't. It reminds me of the scene in American Beauty; the beauty of a plastic bag caught in the wind. Life is a little like that right now...I just see things differently and it is beautiful.

Not that I am feeling morose or anything. And I am not going to sit and watch American Beauty or even Beaches or that other film where Julia Roberts gets cancer...

Which brings me to the main object of my roadtrip this weekend. My daughter. The pillarboxredheaded goddess. How do you tell your only child you have cancer? Do you walk through the door and say 'Hi, how are you and by the way I have just been diagnosed with cancer'? or do you wait a while, eat Mother's Day lunch and then drop the malignant bombshell in right at the end? Decisions, decisions.

Yes, I walked in the door and said 'I have got something to tell you...'. She was ok. Well as ok as any only child is when their mother tells them they have just been diagnosed with breast cancer yada yada...she found it hard to look me in the eye...I caught her staring into space a bit. But she was a trooper. And we went for lunch, went to our favourite shop and I bought her a vintage Marc Jacobs Stam bag...if in doubt, there is always shopping and vintage handbags...all ladies know this.

She'll be ok. She might not be ready for the crass cancer jokes yet, but she will be ok.

I texted her a little while ago to let her know I got home safely and to say 'it'll be ok'. And she texted right back that she knows it will, it is just a bit of a shock and she can't imagine what she would do without me. Hey pillarboxredheaded goddess...I don't know what I would do without you!

...and can I borrow that vintage Marc Jacobs Stam bag some time...

Saturday, 13 March 2010

Marathon driving, being in your 40s and the Cure

I am up early. I have a marathon of seeing-friends-and-telling-daughter-I-have-cancer weekend ahead of me. And no mean drive...probably tot up 400 miles over the next few days.

I didn't go to sleep until 1am. For some reason I flicked through the channels whilst in bed and saw the Matrix was on ITV4. I have seen this film...more than once. But I sat through it to the end...don't know why, but I have an inkling I thought I ought to see it again as I liked it first time around, Keanu is cute and I might never have the chance again (but my, hasn't the actor who played Morpheus put on weight since he made that film?).

In fact, the last few days seem to be a bit of a 'nostalgia fest' generally. I keep thinking about my life in terms of images, sounds and smells flashing before me. Not morbidly so, I am around for a bit yet...but I am sure it is natural to think about the past. I was 40 last year, and I didn't like it. 30 was great and I have never been bothered about age before...but 40 hit me like a dead fish around the mandible. Why? Don't know...perhaps the whole 'there's probably more behind me than in front of me' thing...the evaluation of a life lived so far...an evaluation of love lost, potential unused and fuck-ups. Being 40 was not great...but hey, it was better than what 41 has brought to the great table of life so far!

So there has been a lot of Cure this last few days. I like the Cure. Not so much that I know the name of every track on every album...I am generally awful at track names...but I know a lot of the lyrics and make those up as I go along for the rest. But the Cure nicely sums up my teen years of angst...I was a teenage goth. Well, not really, really. I wore a lot of black. I still do. I wore black eye liner, wore a lot of leather, PVC and velvet and flirted with the darker side of teenage life. I went to dark clubs in the basements of Soho...gigs up and down the country...smoked the odd joint and dropped a smattering of acid...Glastonbury...fantasised about marrying Dave Vanian of the Damned and having Nick Cave's babies.

Anyway, Head on the Door by the Cure has been on the Ipod these last few days. This album (1985) brings all the sights, smells and sounds of my teenagedom back to life. I like Push...great Cure track.

What would I tell my younger self? Not that I have cancer. I'd tell myself to enjoy my body more at 16...girl, you were gorgeous! Tall, slim and athletic. Your bum wasn't too big, your tits were great and you had great hair (Siouxie of the Banshees, eat your heart out). Your PVC trousers and rubber t-shirt made men melt...they were hitting on you the whole time and you, you stupid girl, you didn't realise!!! You were too busy worrying about if your eyeliner looked good and that you had enough HardRock hairspray on to make your black (oh yes, black) hair stick up through the whole gig...

Yes, you denied the very thing that makes us all human. You just didn't get laid enough.

On that note, I have to go. I will be back.

I bet Kylie didn't think her bum was too big at 16...but she may have had the opportunity to have babies with Nick Cave later in her life...





Friday, 12 March 2010

Text Message

I have just received a text message.

It says:

'Just to remind you not to forget you have an appointment at the hospital at @ 10.45 on 16/03'.

Like I would bloody forget. Like my life is so busy that my appointment with a bloody oncologist to discuss my upcoming chemotherapy for bloody CANCER is something I might just happen to bloody 'forget'.

May I take this opportunity to say thank you to the RB Hospital for reminding me not to forget...

I have organised my weekend. No more leisurely weekend mornings reading a good book with a cup of coffee and thinking about going to the gym/shopping/who I am meeting for dinner. Nope, I am on a mission over the next 2 or 3 weekends before I start chemotherapy. I am going to try and squeeze in seing all my friends, liberally scattered around several shires, before I start looking and feeling like shit.

Saturday I am seeing 3 good friends in Kent/Sussex and Sunday is 'daughter day'. It is obviously Mother's Day too and we had already arranged lunch in my honour some weeks ago pre-knowing-about-cancer. I spoke to her to remind her earlier...but, perhaps in hindsight, I ought to have sent her a text message saying 'Just to remind you not to forget that you have an appointment with your mother @ 12 noon on 14/03'

Anyway, my method-acting poker face (or phone voice) would make Robert De Niro weep. She hasn't got an inkling of what I am going to tell her...which is just the way I want it. She is off 'hard-trancing' (or is it 'hard-dancing'?) at some club in Brighton Saturday night...I don't want to ruin her night out, although I hope she is reasonably bright-eyed and bushey-tailed and not too fecked Sunday...

New GP is organised by the way...quick phone call and I am now a patient of Dr Lucy who, I understand from my boss, had breast cancer some years ago. Bingo, there should be some empathy already imbibed in her professional manner.

I have also sorted out my gym membership. Played the 'cancer card' and had said membership frozen for as long as I need it...saved myself a few quid by not cancelling and can restart it once I am up to it.

In fact, having this cancer marlarkey has its advantages...I wonder if I can get any free stuff (and I don't mean the big folder of leaflets the breast cancer nurse gave me the other day). Perhaps Missoni and Hermes would like to give me a free scarf for my chemo-fried bald head at some point?

Bet Kylie didn't have to pay for her headscarves...

Die, death, dead, dying...war, battle, fight, warrior

Yesterday, someone asked me a question I think someone else may have asked me a few days ago...

'What do you think caused this?'

As if I knew? Or had a bloody good idea what caused it? Could I have avoided it?

I have no idea. I don't think I could have avoided it: Breast cancer is the most common cancer in the female population; 45000 women every year in the UK are diagnosed and 11000 die from it; your risk is reasonably low between 30 and 40 but hell girls, you get past 50 and these odds reduce significantly...

I think I am just unlucky. Shit happens, right? Oh, and then you die...

Now, my brother (remember my father? My mother was fatherlet #2 and fatherlet #1 had two kids...one of them walked up to me when I was at college on the South Coast at the age of 17 and introduced himself as my brother) also asked me this:

'You do think you can beat this, don't you?'

I was stumped. I mean speechless for at least 10 seconds (talking...a lot, comes naturally to me). I didn't know what to say because no one has actually asked me that question in the last week.

I am under the impression that the first question put to breast consultants by a woman when she is told 'You have breast cancer' is this: 'Am I going to die?'.

I believe, hell I know, I am going to die...so are you...just some of us die before others...as Gertrude says to her grieving son in the first act of Hamlet 'Tis common all that lives must die, Hamlet'. Right on Gertrude, you might have been a whoring, back-stabbing cow who married your dead husband's brother straight after said husband's funeral, but you got this life/death thing to a pat...shame it took Hamlet 5 acts...

Anyway, I obviously didn't ask 'the' question of Scouse breast man. What would be the point? How long is a piece of string?

Do I think I am going to die? Yes. Of breast cancer or an associated cancer? No idea. Can I 'beat' breast cancer? Probably.

Probably, The odds are good. I am in good hands with scouse and the yet unknown and unintroduced oncologist. I am young and I imagine they throw the cancer-treatment book at a youngen like me...I mean, Kylie, she is looking pretty hot 3 years down the line, right?

Now that word 'beat'. Actually the language of cancer generally...forget the 'War on Terror' ladies and gentlemen, the real war going on across the world right now is not against fundametalist religious fanatics, it's the 'war on cancer'. I am a warrior. I am going to beat cancer. I am a fighter and I am battling cancer...believe me, there are more soldiers fighting the war on cancer across the world right this minute than al qaeda members hiding in the foothills of Afghanistan...

Actually, I am not. I am not a cancer freedom fighter (and, if some shady US intelligence agnecy has checked out my blog because of the word 'al qaeda' written above, for the record I am not a fundamentalist Muslim with an agenda of violence either). I truly don't see it like that...because I don't see cancer like that. I see cancer as an entirely natural thing...as natural as the common cold, a bunion or psoriasis. All cancer is is a bunch of cells that have gone awry...they are all dividing too fast, joining up and deciding to make some of the other cells join their little trade union. I know cancer kills, but I accept it as part of my life...and what I am about to embark on is not some old testament battle of apocalyptic proportions...it is a bunch of scientific treatments to cure these deviant cells of their malignant unionised-behaviour.

Just think of me as the Maggie Thatcher of breast cancer...

Thursday, 11 March 2010

Supermarket Madness

I have just been to the supermarket. Tescos. I normally shop in Waitrose (I imagine the affluent nature of shopping in Waitrose is the reason why I have breast cancer, seeing as affluent women get more breast cancer than those who buy Value from Tescos. Living in Royal Berkshire and shopping at Waitrose is obviously going to be the death of me...).

Going in to Tescos seems to be the most 'normal' thing I have done for days. No mention of 'cancer'. It wasn't all about me me me.

I got to the queue with my little wire basket of perishables (note to self: remember to eat).

And I wanted to shout 'GET OUT OF MY WAY BECAUSE I HAVE GOT CANCER!!!!' at the people in front of me.

Well, it was a nice little diversion for a while....

And I do think I want to tell the world and her husband...the woman who walks her dog past my house; the postman; that nice red headed man called Charlie on BBC News24

It's quite inexplicable.

I obviously haven't, but I darn well want to. Why? To elicit sympathy? To shock? I have no idea...I am sure this urge will cease as the 'novelty' of being newly diagnosed wears off...

Peter Cook and Dudley Moore....

PS

On Sunday my friend Drummond made me sunday lunch. Lunch is a misnomer really, because we didn't eat until 5pm because we drank a cheeky bottle of Malbec.

Anyway, my friend Drummond is a rockstar. He gets the funny side of life in all its glorious weirdness.

We drank a bottle of Malbec (and I think a Chilean Pinot) and he put on a record of Pete and Dud's 1976 drunken ramblings...he and I laughed so much I thought I would pee myself.

It's rather crude, and there is more, but here is a You Tube edit...it gives you a petit flavour of it:

http://www.youtube.com/watch?v=hqEAzROCK6E

I have got the f***ing cancer, I have.

I woke up this morning...

I woke up this morning with the mantra 'I have breast cancer and I am going to have chemo'. I have obviously added a bit...certainly, the mantra has worked effectively up to now because I haven't lost a wink of sleep to the whole concept yet and, more importantly, I have woken up without any feelings of dread.

These are my thoughts, in no particular order, on the news of yesterday:

  • I am happy with the way it went. I am happy with the decision I made in the Scouse breast man's office. It was, all in all, a shit day but it went well.
  • It has occurred to me that I won't have to buy any more razors or pay my beautician to give me a bikini wax for the next 6 months. Oh, and no more eyebrow grooming. I won't have any.
  • Why haven't I cried?
  • My masacara costs will also decrease enormously. I won't have any eyelashes.
  • I am again humbled by my friends. What a bunch of incredible people.
  • The treatment plan, or the infant treatment plan I have in my head, won't be over until Christmas. 2010 is going to be a bit shit in a lot of ways.
  • I am going to have to stop going to the gym (I like the gym and I like getting and being fit). Note to self: cancel gym membership, play on the cancer situation and they might not charge me to much to leave early...
  • I wonder what Kylie's thoughts were on her 'D-Day'. I think Kylie and me have a lot in common now (I would never really have been able to say this before Colin...she is petite, talented and gorgeous, I am tall, booksmart and acceptable. Now she and I are more alike in many ways than her and her sister Danni...actually, I didn't really think about Kylie or Danni before Colin...will having cancer make me like the X-Factor too???
  • I won't be able to do my Roadtrip Across the States holiday in the summer now. No holidays for me this year because I reckon my worldwide travel insurance will be invalid and no airline, not even the struggling British Airways, will want my business.
  • Do I buy funky headscarves (was thinking Missoni, Hermes and Prada darling), or shall I stick with my customary 'black'.
  • I am glad I am not, well the plan is I won't and I suppose things might change...yes, I am glad I am not having a full chopped-off-boob. I realise now I didn't want to lose my whole breast, even though I accepted that it might have been the only way
  • It occurred to me that now I have cancer and am having chemo, then everything is about me me me...I kind of like this in one way, and not in another. I am quite a shy person really. I don't actually like being the centre of attraction...not that cancer is attractive, but people are going to treat me quite differently.

See, random. But I suppose I am under some stress and thoughts can become randon when you are feeling a little stressed, can't they?

I mean, I must be stressed? I am tired. I have pretty much lived on adrenaline the last week. I think it might be like that for a bit longer yet...but I am eating, thinking straight and sleeping ok. When I have been stressed in the past (bad job experience/university exams/my lover and father of my daughter leaving me for someone else) I have not eaten and not slept. I am doing all these things quite normally.

I think I am thinking about why haven't I broken down/cried/wrung my hands yet too. Will I? Do I need to? I don't feel the need to. Am I normal then? I feel perfectly normal. I don't feel ill or like I am on the urge of a a breakdown or anything.

Can you be perfectly normal and not cry when you are told you have Type 2 cancer and your whole year is fecked up because you are going to have chemotherapy???

Right, off to work. Today I am going to sort out a new GP (long story about GP, where I live at the moment and what I do for work...I might get around to blogging it). Superstar boss has this sorted. Apparently I need a good local GP because chemotherapy has a way of making you need their services regularly... I think I might also cancel my gym membership and also think about buying a new cellphone.

See, life goes on...

Wednesday, 10 March 2010

Surf's Up

I have Stage 2 breast cancer, or so the lovely Merseyside breast consultant told me this morning...

...except it wasn't this morning because he was running 90 minutes late and my 10.30am appointment was nearer midday.

Oh the wonderful NHS.

But that's ok. I liked waiting. I got so bored waiting I forgot to be anxious.

So, Colin is 30mm and Malcom has evolved from a 'maybe' into a fully fledged cancer all of his own.

And because the collective-known-as-Malcom has made an appearance, I have to have chemotherapy as well as surgery. Hey ho...

I have opted to do the unusual. I have decided to have chemotherapy before surgery. There's no 'doctor, cut this cancer out of me right now' going on here...I am being very brave and living Colin for the next 5 months whilst an oncologist feeds my arm with a cocktail of drugs to kill off Malcom and any other lurking nasties.

Upside is the chemo should make Colin a shadow of his himself by the end of the summer, then when the lovely Scouse consultant comes to do his thang, it won't be the unkindest cut of all, rather a nip and a small dent.

I do have to a number of scans/x-rays/ultrasounds to check Malcom et al haven't spread to my lungs, bones and liver...but Scouse told me the chances of this are minimal. I believe him. Right now, I'd believe him if he told me I was Osama Bin Laden...because I am OK, but I am pretty wiped out by spending the whole day in the hospital talking about cancer.

My best friend came with me this time. I didn't fall to bits at all and was perfectly articulate and capable whilst discussing everything...but I am glad she was there, because we had a bloody good laugh and made up some more cancer jokes...

If it is good enough for Kylie, it's good enough for me...

D-Day minus 2 hours

It is the morning of the D-Day appointment. I have two hours to go until they officially tell me I have breast cancer...and perhaps some more information on what happens next.

The 'problem' with the 'perhaps' bit is the Multi-Disciplinary Team (that is, all the healthcare professionals who deal with cancer...surgeons, radiologists, oncologists blah blah) have their meetings-to-discuss-new-cases on Tuesday mornings. My pathology/histology results came in Tuesday afternoon. Thus, they haven't discussed me and Colin...and the surgeon/consultant I see this morning to give me the 'big news' might not wish to discuss options with me until he has spoken with his comrades...

The reason I logged on this morning is to tell you an interesting fact about breast cancer:

The more affluent a woman is, the more likely she is to get breast cancer.

I am not particularly affluent. I earn about 40 grand a year and I have a degree. I don't own a house, I have no pension and I don't holiday twice yearly in the Maldives. I do own a few Mulberry handbags and the odd bit by Missoni, but that hardly makes me 'affluent'.

If I earned less, was brought up in Tower Hamlets and lived in a high rise ex-council flat, which the producers of The Bill like to use for outside scenes for the apprehension of crack dealers and toms, I probably wouldn't be writing this blog....

Go figure....

Tuesday, 9 March 2010

D-Day minus 1

OK. So I have breast cancer. But I am not supposed to know this...remember?

I am a practical person. I am also realistic. Although I know I have it and can be very articulate about it right now, I might fall to bits when I find out I am not just losing Colin, but the perhaps the collective Malcom and will need to have chemo and radio and anything else ending in 'o'.

Might I add my breasts are my best feature at this point? Many men (there haven't been that many...less than 15 and more than 10) always comment on them. A perfect 34D (sometimes a 36DD if I have skipped the gym for a month and eaten too many pies).

I haven't completely got my head around losing a breast...and I might. My lump is very near the nipple and perhaps even a little behind it...lumpectomy may be impossible (I have begun to educate myself on possibles at this point).

My other best feature, according to men and my male hairdresser, is my hair. A natural brunette with a reddish undertone, long and wavy. Cheryl Cole/Tweedy had to have hair extensions to get my hair. She got paid a few hundred grand by a well known shampoo company...I would have done it for far less, swung my tresses and not given the company any embarrassment in the tabloid press about the fakeness of it all.

I might lose all my hair if I have to have chemo.

Thus, the plan is made. I go to the barbers (not said male hairdresser because he will charge 50 quid) and I get a number 1 all over the day before chemo starts. I then run my hands over my head like Elvis Presley when he joined the US Army in '58. An iconic black and white photo. That'll be me, that will. Not as beautiful as Elvis (and he had two nipples, which I might not if I need my breast chopped off), but I'll run my hand over my newly shorn head too, just like him.

OK. back to the falling to bits possibility and telling people...

When I came out of the hospital I decided to tell everyone in my address book there and then. I sat in the car and I rang every single one and told them. Just like that. I thought it was best to tell them all because let's face it, I might be a very self-contained, autonomous intelligent female, but you can't go through this cancer thing alone. I mean, I am going to need someone to at least drive me to the hospital and buy me grapes, aren't I? I am going to need my friends, I know this.

Most were shocked. Some were upset and I had to console them. I know if I was told by someone I cared about (well I think my friends care about me) over the phone that they had breast cancer, I would be shocked and upset for them.

I saved telling my very best friend til I saw her in person a few hours after being told. I waited outside her house for her to come home from work. Unfortunately, the surveyor from Anglian windows turned up the same time she did to price up her house for double glazing. Poor fella must have overheard some of the conversation. He certainly gave me a special smile when he left.

My friend cried, the only one to do so in front of me...

...actually, I think my father might have shed a tear down the phone. Unfortunately, I have ruined his honeymoon. It doesn't bother me that much and it shouldn't him really seeing as this is his 4th or 5th honeymoon (I can't remember if he married fatherlet #4, so this might be his 4th or 5th wife). I must add, in case he ever reads this that this wife is lovely. I like her. She must be a special woman to even consider marrying him so she is ok in my book....

My father had to bury my younger sister about 5 years ago. He cried a lot then too. I suppose you are not supposed to bury your children and my father, a once high-ranking police officer and now a semi-retired lawyer (and a very good and successful one) might be highly intelligent and authoritative, but he is a big pussy really. I remember when my younger sister was ill (she was an alcoholic and died of alcohol-related disease at the age of 30 or there abouts), my father asked the consultant at Kings College if she was going to die. 'Well' said the consultant, 'we are all going to die'. That's my dad...all those qualifications and crown court cases won and yet can't see the darn obvious.

Actually, I didn't just ruin my father's honeymoon but my employer's birthday too. She was in France skiing...and I had to tell her I had breast cancer down the phone. She said she cried after she put the phone down, but that is all done with now and she is her usual rock-like self. I am very lucky to work for such a woman (perhaps I'll get around to telling you what I do for a crust at some point). She is sassy and has the same sense of humour as me. Good thing really, I have a pretty black sense of humour and she and I have already laughed about Colin and, perhaps, the collective known as Malcom.

The only person who doesn't know a thing, yet, is my daughter. My daughter is 20 and studying art at a college on the South Coast. I don't want to tell her until I know what exactly is happening to me. She is a cool kid...long bright red hair, tongue piercings and a wicked sense of style and music-taste (if you like hard trance...or is it hard dance?). All she has is me...her father is useless and hasn't spoken to her for over 3 years...and she has no aunties or uncles, no cousins or siblings. I am it. And I pay for her flat and all her bills because god damn student loans don't buy a pint these days. She will be worried about me, of course, but I don't blame her if she worries about money too. She doesn't have to, of course, because I have a super-star employer who has already told me not to worry about money if the worst happens and I am breastless and hairless in rural Berkshire. I will always make her monthly rent cheque...

I am saving the news about Colin until the weekend, when I know more.

There aren't many people in my life who don't know...and now friends of friends know. Amazing how the old jungle network gets a-ringing when there is news to be known. And every single one of these people has overwhelmed me with their love and support. I am truly humbled by it. I am one lucky person to know these people. And I am one lucky person to work for my boss....

Of course, I have told them all they have to be nice to me because I have got cancer....

Monday, 8 March 2010

Week 1

Well it's not really 'week 1'.

Technically it is about week 4 or even 5 now. In fact, who really knows 'when' the first week of this new world of mine really started?

Let me explain.

In the second week of February, I found a lump in my right breast. Wasn't really looking as such (I mean, who really checks their breasts as we are supposed to every month???). I was moisturising after my daily bath and 'felt' something. I wasn't even sure if I imagined it to be honest.

I knew enough from those Daily Mailesque female-interest articles on 'ladies, this is how to check your breasts for lumps' to lay on my back and have a self-grope. No, I didn't imagine it, there really was a lump.

I also knew enough at that point to know leaving it for a week or two would be a reasonable thing to do...lumps and bumps can come and go in women of a certain age....

...except I am a very pre-menopausal 40

Anyway, I was booked for a week trip to Morocco in the middle/last week of February for my 41st birthday.

I decided to leave it 'til I got back. Then I would take the breast by the lump and sort it out.

I went to Morroco, oddly enough with a good friend who just happens to be a nurse, and a nurse who works in a breast care unit.

I didn't tell her. I didn't tell anyone about the lump. Why ruin someone's day by telling them something which might not be a 'problem' and overly worry them?

By the way, I have named my lump 'Colin'. Apologies to anyone called Colin, or who has a good friend or family member with this name. I don't care much for the name and it seemed a good idea to call said lump 'Colin'...

Well, I went to souks, palaces, Richard Branson's Kasbah and climbed up part of the second highest mountain in Africa with my friend, the breast nurse and Colin.

I came back at the end of February and realised Colin was still firmly at home in my right breast. And I had to see a doctor to confirm I wasn't imagining Colin and, I suppose, to confirm it was anything more than a benign, unimportant bumpy bit of tissue.

I decided not to bother going to a GP. I don't hold much stead by general practioners...I have my reasons, and I might even get into why at some point down my blogroad. What is a GP bar a jack-of-all-trades and master-of-none? They are nothing more than a gateway to all the wonderful services available in the NHS...

I decided to go to a private clinic nearby and pay a rather hefty sum to a proper breast man (no private medical insurance here). A one-stop-shop where I could go through the process of being feeled up and perhaps irradiated with an x-ray mammogram machine....all in the quest for the words 'nothing to worry about'. If things escalated, I could get put back into the NHS.

I still hadn't told anyone at this point. Still felt best to hold on to it all until I had something to actually tell them....

I wasn't overly anxious or overly worried. 90% of women who find Colin's brother in their breast have not got anything more than a non-cancerous lump.

I am a realist. They are pretty good odds all in all. But I also realise someone has to be in the other 10% and it could be me. Why not me? Cancer happens to me, you, your auntie and the lady who does the dry cleaning, as well as Kylie Minogue. Cancer doesn't just happen to other people (although, in my life so far, it has).

OK. Cancer has happened to me. I have breast cancer. I say this to myself constantly, particularly when I wake up...you know when you wake up and you begin to focus? When everything is shady and you only really realise you are actually alive...and then you begin to think about living? When there is something bad in your life you get the feeling a straw has been pushed into your stomach and someone is sucking all the air out as the realisation something really shit is happening in your living life?

Well I refuse to feel this when I wake up. I say the mantra 'I have got breast cancer'.

I am not supposed to know at this stage that I have breast cancer. I haven't had my pathology and histology results back yet. I have that tomorrow. But I am an intelligent girl, I come across as articulate and oh-so level-headed. I also know doctors. I know how to speak to them and I know what questions to ask. Past primary level (GPs really aren't in my Top Ten of healthcare professionals), these consultants speak a different language and I know there language and how to talk to them...

I asked the right question and, more importantly, I didn't burst into tears as 5 needles were inserted into my breast and my armpit.

The radiologist, when asked, said 'you have breast cancer'.

Most women, after having a biopsy and waiting for the results, would be clinging to hope. I don't need to do that because I have already heard those words that the world and her husband dread.

You have cancer.

And I survived (on my own and I drove myself home).

Tomorrow I find out how naughty Colin has been...whether I don't just lose Colin, but my whole right breast...whether my lymphs are involved (if they are, the collective will be called 'Malcom') and what happens next.

Signing off now. I am going to write during my work break about how I told everyone about having cancer. I didn't tell a soul up to the words 'you have breast cancer'....