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Saturday 31 December 2011

Happy New Year!

Seeing as it’s New Year and everything, I thought it might be good to look back and evaluate. Like Jools Holland’s Hootenanny but without any famous faces and with more mentions of the C-word (not the really bad one, and not the one my mum in particular hates (that’s “crap” for the Ma Booth uninitiated…). ).

All in all, it’s been a pretty good year. Work has been ace, I’ve had two of my best days EVER (Royal Wedding Day and mastectomy day – something to do with the drugs methinks), I have re-discovered a five year olds love of jigsaws and I spent the first four months of the year with a more or less permanent tan. Even though I didn’t particularly want to get a dose of the old breast cancer, it’s not the worst thing in the world (see below), and it certainly does put things in perspective. Character building I believe the term is.

More than anything, my friends and family and even people I barely know have been nothing short of amazing. From bringing me Miss Marple box-sets and Carry On style jigsaws, shopping for wigs when doubled up in pain themselves (you know who you are), and making me endless cups of tea, chicken pies and ginger shortbread through to happily talking about anything and everything when it just gets too darned boring to bang on about cancer any more and simply sending me nice messages to say hello. I literally can’t list everything everyone’s done and said so far. I only hope that if any single one of them has to go through anything like this I can be as good a friend / sister / daughter / niece / cousin to them. I have certainly picked up some tips…

Then there’s the people you meet – people you’d never meet if you didn’t all have to have bits of your body chopped off. Funny, brave, amazing women who just pick themselves up and get on with it and make jokes about being bald and boobless. And the doctors and nurses who deal with you when you’re upset, off your noggin on drugs, or just being plan flippant about the whole thing. And who make the whole thing eminently normal and deal-able with. Legends, each and every one.

So, it’s a bit schmaltzy all in all, but it’s much easier to say these things in type rather than having to man up and say it in person (far too high a risk of tears….).

And, as I said, there are way worse things in the world than breast cancer…..

 - Pretty much every other type of cancer where they actually have to open you up and chop out bits that actually DO something. My boob was nothing but a vanity project (I might not have mentioned it, but to clarify, I did have a GREAT rack. And it was only going to go south from here - I am in my thirties after all).
 - Losing a whole leg. Or arm.
 - Hangovers over the age of 30.
 - Pretty much anything Hitler did. I think he was quite nice to his niece but I think it’s safe to say that doesn’t cancel the rest out.

So, as we can see, every cloud has a silver lining. Happy New Year one and all - here's to much fun and games in 2012.

Monday 19 December 2011

The norm....


According to the many booklets and pamphlets and leaflets and whatnot they give you, one of the side effects I could be suffering from is a lack of appetite – I should be delicately picking at salad leaves and running to the loo at the thought of swallowing a mere morsel. Reclining on a sofa whilst people tempt me with titbits....

Turns out I’d eat the cat if he sat still for long enough.

So far today I have eaten;

1 bowl Crunchy Nut Cornflakes
4 ginger biscuits (ostensibly to stave off nausea - I think "think" this could be psychological...)
2 satsumas
Half a quiche with a big salad
Half a chocolate orange (NB – this is NOT one of my 5 a day)
Half a bag of roast turkey with onion gravy crisps (one of those big sharing bag things)
5 After Eights
Another big salad
A salmon steak
A baked potato

On the plus side, when I have my reconstruction they could make it out of the fat round my middle, giving me a tummy tuck and a new boob in one fell swoop. I’m not entirely sure it’s not going to be an essential procedure come this time next year….

Tuesday 13 December 2011

Chemo 1


Chemo 1

1 down – 5 to go. Tick!

I don’t want to tempt fate or anything (and I'm sure this will...) but day 1 went (I think) OK – home and on the sofa and watching crappy American telly having dispatched the family to the pub for an hour. So all normal then…

Spent the majority of the day in the oh, so flattering cold cap – they freeze your scalp to restrict blood flow and try and reduce the hair loss (although now I’ve got the wig, I’ve got better fake hair than normal….). Freezing cold for the first 10 minutes then your head goes numb and it mainly feels like you’ve decided to rest your head on a rock for a bit. And you look like you’re going sky-diving. Or cross country horse riding. Or on an episode of Total Wipeout.

I did make a lovely new friend as well – my boob twin… We both had the same boob removed, the same number of nodes removed and we’ll be doing our chemo on the same day for the next few months. So it’s really nice to have a buddy to go through it with and while away the hours talking nonsense.

So all in all, a remarkably lovely day (I think there is something actually wrong with me to find so many lovely days in hospital…. Not sure it’s exactly the norm). Lovely, lovely nurses, lovely volunteers and a lovely new buddy to hang out with.

And one of my anti-nausea drugs is called Domperidone. Which sounds a little like Dom Perignon. Which can’t be bad.




Sunday 11 December 2011

A Brief History of (my) Time (over the past couple of months…)...


NB – not to be confused with Prof Stephen Hawking’s (probable**) masterpiece “A Brief History of Time (** I haven’t actually read it…).

I love a nice neat table. A tabulated schedule so you know exactly where you are and what you’re up to…. So I thought I would take a look back at what’s happened so I can start fresh when the chemo kicks in and I forget my own name.

OCTOBER
2
Find the lump. Nah, not I. I must have pulled a muscle clambering in a tree at Center Parcs. Of course I must.

6
Off to the doctor. Scaring children and old folk alike with my snivels before properly bursting into tears on my GP when I have to say “I’ve found a lump” out loud for the first time. He didn’t seem to hold much truck with the crying thing – said it was likely to be a cyst and referred me to my choice of hospital (my choice – like it)

7
Call from the hospital to book in my appointment. Speedy!

12
Off to the Breast Clinic to see my first consultant who thinks it could be fibroids. But we’ll check it with an ultrasound. That’s fine – I can cope with fibroids. Hmm. Ultrasound looks a bit confusing – let’s hop into the MRI scanner for good measure. And introducing my first encounter with the open backed hospital gown… Lying on a bed with my boobs hanging through specially cut holes while the machine makes noises that sound like a bloke standing in the corner making the noises that boys seem to find it necessary to make; whaaap whaaaaap whaaaap, crrrrrrooooo crrrrrrrrroooooo crrrrrrrrooooo, oooooEEEEE oooooEEEEE. Luckily, Magic FM is on the radio so the sounds drown out Daniel Bedingfield.

19
Results are back from the MRI. But it’ll be fine – it’s just fibroids right? No point in taking anyone with me cos then it’s turning something and nothing into something right?
Apart from it is something. Potentially. It could be fibroids, but they’d be a bit unusual. So it’s cancer then.

22
Off up north to tell my mum and dad. One of the most awful things I’ve ever had to do. Especially as my sister and I said we were going up north for a party so as not to worry them… Tears, hugs, gin & tonic and Strictly (my family is terribly pragmatic). Mum tells me she thought I was going to say I was pregnant. I point out that if and when I do get knocked up I’d rather it didn’t prompt sobbing from either of us.

24
Diagnosis Day. But you know about that already. Spend the rest of the day telling people in a ridiculously chirpy way that I’ve been diagnosed with breast cancer. Anything to avoid the dreaded and sympathetic “but ARE you OK…?”.

25 /26
Friends come round for dinner and give me pressies. I feel like a proper fraud. I don’t feel ill at all. So that cashmere rug seems like a crazy idea…

27
Fare thee well Judas boob. Cue wittering incoherently and non-stop at anyone who’ll listen. My friend Alan; “What’s it like being on morphine?”. Me; “Dunno, I just feel normal really”. My sister; “Are you kidding?! You can’t focus and you haven’t shut up for half an hour…”.
Have I mentioned how much I love morphine??

28
Horrible registrar tries to send me home doped up to the eyeballs with two drains hanging out of my non-boob connected to two jam jars that are filling up with my “fluids”. I sulk.
Lovely consultant comes to the rescue and tells me I can stay in til tomorrow. Immediately I’m sweetness and light and as charming as one can be on a cocktail of morphine, tramadol and ibuprofen.

29
Home.
I LOVE my cashmere rug.


November

7
Back to see my consultant to check on things. I compliment him on his handiwork – the scar’s terribly neat. In fact, it looks a little bit like my boob’s winking at people. I also look super thin on that side.

14
See my consultant for the last (sob sob) time. Scream at the removal of one stitch and immediately apologise for being a bit of a girl. I’ve dealt with everything else, but the one stitch?? I make a right fuss.
Off to see the oncologist. Turns out my lump was 7cm. 7cm!! Not far off the height of your average mug. I know I’ve got fairly big boobs, but how on earth have I been hiding that bad boy??
Busy day today – after the oncologist there’s an echo-cardiogram and a bone scan. So I see my heart and my bones on the telly. Medical people are dead clever. And I know more about my body than I’ve ever wanted to or thought I would. Each test is something else for me to ask questions about – I may as well know as much as I can about what’s going on.

23
First meeting at the Reproductive Medicine Unit. Forms, forms and more forms and no, I still don’t have a significant other thank you very much. Happy birthday me.

28
The injections and oestrogen inhibitors begin… So my jolly hockeysticks idea of them slinging me up in stirrups and just grabbing whatever’s in my ovary is a little… um… naïve? The injections continue for another 10 days, and after 3 days a second one is thrown in for good measure. The injections I can cope with (I become quite the chemist), but the soluble antibiotics?? Yuck. Soluble tablets remind me of being 5 and choking down soluble Panadol. Revolting.
The scans start today. One every other day in my stirrups with my eggs growing by the hour and a doctor ferreting around my nethers. Today the immature egg follicles are teeny tiny – the size of map pin heads on the screen.

29
Off to The Haven in Fulham for the day. An amazing, amazing resource for women with breast cancer – they offer complementary therapies to run alongside your other treatment and today is an introductory day. Meet some amazing women who I hope will be friends through this whole shoddy affair and beyond.


December

7
By today, the eggs are massive – like the size of 2p’s on the ultrasound screen. And it feels like it. Mainly I feel bloated, but as soon as the doctor tells me I’m probably quite tired I immediately decide I am. Tired, sooooo tired, so very, very tired.... Until after 20 minutes of moping around I realize I’m not actually tired at all and really should start being less suggestible….
So off I march to the wig boudoir.

9
The eggs are out! Feel like I’ve been kicked in the ovary, but all in a good cause eh? 14 mini half me’s waiting in a lab in Kings Cross to take over the world.

11
Which brings us to today. And the chemo’s not even started yet. Cor blimey….


Friday 9 December 2011

Egg Hatching...

Cluck cluck.... It's one o'clock, the eggs are out and I'm at home on the sofa with a cup of tea and the cat. All in all I've laid 14 mature eggs which is a tidy little number. So at some point (if I so choose) I could knock myself out a football team with subs (Eggs-eter City...? Brest?). Feeling very much like someone's kicked me in the guts, but nothing a healthy dose of paracetamol and an afternoon in front of a Joan Hickson Marple with Ma Booth won't sort out.

Dignity once more out the window this morning as I was presented with the ubiquitous open backed gown. On the bright side though it looks like I won't have to set forth with the suppository that's been lurking in the corner of my living room menacingly for the past couple of weeks. So, every cloud and all that....

Also turns out my initial random reaction to general anasthethic wasn't so random. I definitely remember lying on the bed in the operating theatre and them telling me I was going to have something that would feel amazing. Then I was definitely asleep but also awake;

Me: I'm sorry - I don't seem to be able to go to sleep. Will that delay things?
Nurse: Um, we've already done it. You're waking up.

Riiiiiight. Cup of tea and a custard cream then? Thanks.

Thursday 8 December 2011

Preparing for the side effects....


As one of my new fellow breast cancer suffering friends asked last week, why do we have to get a condition that makes us fat and bald? That was before someone else told us that in some cases people’s nails fall out… What the….?!

I’ve been pretty blasé about the whole thing, but after a day at the Haven (breast cancer care support centre – absolutely amazing place), I realized that other people have been taking things very seriously and preparing for the side effects that (although not inevitable) could well knock us flying with a bump. Have you got dry mouth toothpaste, mouth ulcer cream, baby shampoo, a child’s hairbrush, a child’s toothbrush, headscarves, a wig? Have you been to your hygienist? Have you got an ultra-absorbent towel so you don’t have to towel dry your hair? My answer to all of the above was… umm, no. Hadn’t really thought about it really. Turns out you should think about it. Cos you definitely don’t want to go and buy a wig when your hair’s fallen out on one side and is disappearing with every breath of wind.

So off to the only place one should buy one’s wig – Harrods. The Vicky Ullah Wig Boudoir at Harrods to be precise (again, an amazing place). I went in wanting “a short bob, like my own hair so I don’t draw too much attention to myself”. I came out with waist length brown hair with blonde highlights and a fringe. I was told I could cut it to suit my face. Not. A. Chance. If I can’t have my own hair, I will have the hair I have always wanted.

Egg Freezing


Because of my age, the NHS in my area offer egg freezing as standard. Just in case the chemo knocks my fertility for six. I love the NHS. I truly, truly do. There has not been a single thing I could fault in the past two months.

If I thought dignity had gone out the window with having my boobs checked, lying on a bed having an “internal” ultrasound scan every other day for two weeks is on a whole new level. And yes, “internal” does mean exactly what you think. However lovely everyone is, however quickly and efficiently everything is done, and however fascinating it is to see your eggs on the ultrasound screen growing by the hour, you leave your dignity at the door and pick it up as you scuttle out onto Euston Road.

Day 1 – signing a million forms to allow them to remove the eggs, freeze the eggs, use the eggs for research, freeze an embryo and on and on and on. All very useful and all very legitimate forms. After all, I don’t want my eggs being used in just any old way. And for couples going through IVF then it’s all especially great. For a single girl on her 33rd birthday though, there’s nothing quite as depressing as filling out the said million forms asking for “your details” and “your partner’s details”. Um. Yep. Don’t have one of them. But thanks for asking. And asking again. And again. And again. And once more for good measure. Thanks. Not blooming applicable.

I also managed to get halfway through a form giving them permission to freeze my sperm before I realized I wasn’t quite their target audience.

So on to the scans and the injections. Again, I have to do it, and I want to make sure I have something in my back pocket in case my ovaries do bail on me, so let’s crack on with a smile on my face. Until the day they couldn’t find my left ovary. I knew it was in there, they knew it was in there. My legs are in stirrups, the doctor has an elbow on one knee, holding my other leg out of the way with his other and while I press down on my tummy and he ferrets around with his ultrasound stick. It’s not elegant. It’s not particularly comfortable. In fact, it’s all a little James Herriot. So it’s made all the better when I nurse pipes up with “Have you been eating a lot of fruit and vegetables? Maybe you should cut down a bit – we probably can’t see it for all the gas.”

And back to the Euston Road to scoop up that dignity and stride off with as much self-respect as I can muster.

Getting Rid of It


So, the diagnosis was Monday. On Thursday I’m sitting in an open backed robe, taking off my toenail polish with NHS supply remover and signing a form for a mastectomy of my left breast and axillary clearance of my lymph nodes. The nodes did their best to get rid of the cancer on their own bless ‘em, but had only gone and got tumours themselves.

I can honestly say I had no doubts about the op. I do sometimes wonder if I’m a little bit emotionally retarded about the whole thing, but I think a mixture of not wanting it and having complete faith in my surgeon made the whole thing very straight-forward in my head. So into surgery I go…

And then, the morphine. The lovely, warming, snuggly, cocooning morphine.

I hear a voice above me (my eyes are closed but I know exactly where I am).

“Lucy, Lucy… Do you know where you are?”

“Yes, I’m queueing for the bar at The Flask”.

(The pub. My sub-conscious had taken me straight to the pub).

“Erm… No…. You’re in hospital…”

Bump. Back down to earth then.

“Ah, yes, yes. Have I been snoring?”

From that point on, I can only imagine I was the most annoying patient that recovery ward had ever encountered. When I wasn’t sleeping I was talking. A lot. Constantly.

“Oooh-I-love-a-chicken-mayonnaise-sandwich. Thank-you-so-much. And-a-banana? Ooooh-I-love-a-banana. I-didn’t-think-I’d-be-hungry-when-I-woke-up-but-turns-out-I-am. What’s-your-name? Chris? Where-do-you-come-from-Chris? I-thought-Portugal-but-I-don’t-know-why-I-thought-Portugal. Ooh-the-Philippines. I’ve-never-been-to-the-Philippines-but-I-have-been-to-Malaysia. I-love-Magic-FM-don’t-you? Just-singalong-songs-all-day. I’m-having-a-lovely-day. One-of-my-best-days-ever. I-never-thought-I’d-have-a-lovely-day-but-I-am. My-other-best-day-was-the-Royal-Wedding. I’m-having-a-lovely-day. Did-I-say-this-was-one-of-my-best-days”.

Shut up. Just shut up! Around me were other patients reacting normally to having had an operation. Sleeping, the occasional groan, some of them looking a little grey. Poor them for having a small child with ADHD unleashed on their ward moments after undergoing surgery.

Finally, I’m taken up to my ward (if only to give my recovery nurse five minutes of peace).

To find….

More people to talk at. God help them.

Telling People...


Is horrid.

Possibly the most horrid part of the whole thing. As soon as someone cries (which they’re perfectly entitled to do, let’s be honest. I would if it were the other way round), you’re off. So I had to nip it in the bud. Get in with the no nonsense, I’m fine, I’m dealing with it, it’s not getting the better of me attitude before they could get upset. Selfish I know, but I had to tell a lot of people. I couldn’t cry on every single one of them. And I didn’t want to. When I want to cry I’ll cry (and you’ll know about it), but if I don’t feel like crying, I sure as hell don’t want to be set off. The thing is, you have control over what’s now happening to you – you know when your op is, what treatment they’re thinking of giving you. Your friends and family don’t. And that’s scary.
What is truly, truly horrible is knowing that you’re the person who is causing the upset to whoever you’re telling. Understandably people are shocked and upset and you would do ANYTHING to not be the one to have brought that about. You’re intentionally, through no fault of your own, hurting them. And that’s shit.

There are, of course, the people you think know who don’t. And then you feel terrible. Again. Only yesterday I sent someone an email canceling dinner and telling them I’d be in touch after the chemo started. After an hour with no reply I sent another email saying “you were told I was having to have chemo right…?”. That one got a reply straight away. “No”. Oops…. And the more you tell people, the more flippant you get – this has become a constant reality in your life and it becomes the norm. Not so much normal for your friends though…

Options...


For me, there was no option. I didn’t want it any more. I LOVED my boobs. Honestly loved them. Give me a glass of wine and I would tell anyone (mostly inappropriately) how much I loved them. Once, on a date at Twickenham, I told my then boyfriend’s best friend how much I loved them and how brilliant they were (then boyfriend was at the bar and best friend was quite the hottie. Then boyfriend didn’t last very much longer.). I regularly had arguments with a very good friend of mine about who had the better rack. Turns out it was her.

So, immediately, I decided on a left breast mastectomy. The Judas Boob had cheated on me and I didn’t want it any more. I vaguely remember options being offered (i.e. a wide local excision / lumpectomy), but both myself and my consultant agreed that the mastectomy was the way forward. I don’t ever want to look back and think I haven’t done everything I could to banish this, and a lumpectomy frankly didn’t cut it.

“I can operate on Thursday if that suits you?”
“Fine”
“Do you want 24 hours to think about it?”
“Nope.”

Finding Out...


It’s a scary word, the old C word. But for me, it was a hell of a lot scarier in the week between “it could be cancer” and “it is cancer”.

I love my consultant. Properly adore him. Which, considering I knew him for a grand total of two weeks before diagnosis and at the end of that two weeks he dropped the breast cancer bombshell seems like a rather extreme reaction. But I had all the faith in the world in him – after all, if anyone knows how to get rid of this bloody thing, it’s him. Frankly, he could’ve told me I needed my prostate removed and I would’ve happily trailed after him into theatre.

Once he told me for certain, reality kicks in. I thought I’d fall apart. I thought there’d be sobbing and denial and over-reacting and all that. I secretly, in the back of my head (although he’d already told me it could be cancer and I knew that then meant it WAS cancer) knew that it couldn’t happen to me and therefore wouldn’t happen to me. But weirdly, there was calm. Tears, obviously, but generally calm. We had something concrete to work on. I had cancer. A stage 2 invasive lump and ductal carcinoma in situ to be precise. 

Hospitals...


They don’t half move quick when they have to, the NHS. From being referred by my GP on the 6th, it was a non-stop ride through tunnels (MRI scanners), hoops (CT scanners), squishers (the mammogram) gloop (ultrasound scans) and weird machines that sound like a stapler (whatever the biopsy machine is called) to an operating theatre on the 27th. Within one visit you become perversely used to stripping off in front of anyone and everyone. You want to see my boobs? Sure thing – just let me get rid of this annoyingly obstructive jumper. Someone else need to come in while I’m lying on a bed naked from the waist up? Why not? More the merrier….

Each time I convinced myself I was fine. It was only fibroids – the half hour MRI scan is just a precaution after all… It’s only with hindsight that you realize that if they were so convinced it was just a cyst or just fibroids you wouldn’t be going near the MRI machine. Lying on a bed with your boobs hanging through specially cut holes. Dignity goes out the window.

Finding It...


Finding it….

It’s scary, the not knowing. You find a lump. You know you should go to the doctor, but there’s still something in the back of your head saying “don’t worry, it’s YOU. YOU won’t have cancer. That happens to OTHER people”. But you go. And you sit in the waiting room sniffling away to yourself and trying not to scare the small children and old people surrounding you. After all, they’re OLD – they’ve probably got a lot more to worry about than you have. You’re THIRTY-TWO. Prime of life. And, as you tell anyone who’s prepared to listen, you have a GREAT RACK.

Turns out telling yourself it isn’t going to be you isn’t a particularly effective way of keeping the cancer at bay.

Introduction


When I was 32 I was diagnosed with breast cancer.

I say 32 as if that was years ago. It wasn’t – it was 2 months ago, but somehow 32 sounds more shockingly young than 33 to me. It’s not something I ever wanted to have, but now I’m having to deal with it I may as well get on with it with a smile on my face. After all, the main person who will be affected by my own negativity is me. So I’ve found it, I’ve had it removed and now I’ll crack on with making sure it ain’t coming back.