Thursday, May 31, 2007

A close shave (chortle, chortle)



More of a hairdon't than a hairdo, this is the new shaven headed me.

I've been living with the new head (you can't really say 'I've been living with the new hair' when there isn't any) for about 36 hours now and it's great.

Yes it makes me look a little like I'm of the sapphic persuasion (annoyingly I haven't lost quite enough hair from everywhere to make it look like I could have ONLY done this because I'm balding, and not because of some lifestyle choice or perverse fashion statement) but as long as I when I'm wearing the bike kit I keep my helmet on at all times, it shouldn't be too bad.

Yes it means I have to plaster on the eye make up otherwise I look like a small boy (buy stock in mascara, buy, buy!).

Yes it means I regret not being a petite size 8, fragile in my shaven headed Nathalie Portman like beauty (bingo wings are not a good look with a buzz cut.... I think I need to do something about them pronto.)

But it does make me feel far happier than having longer hair that was falling out in front of very eyes, with only a bad version of the Hamlet combover (which is not good for a middle aged man, yet alone a woman of my tender years) between the world and my skull.

It means I don't notice the hair that falls out, and it seems, I think, to genuinely be falling out less as there is less for it to catch on, and I have dropped that horrible nervous habit of plucking at it to speed it on its way.

It also means I can wear the funky hat/scarf thing to work, down the pub, out and about, and then when I get to where I'm going, I'm comfortable enough to remove it and sit there in all my fuzzy-domed glory. It's liberating, it really is.

And it doesn't seem to scare people half as much as i thought. Although I have found myself gurning with compensating smiley-facedness at people in queues just to make sure they don't think I'm about to bite their baby's head off or anything like that.

Now that I don't have any, I am a lot happier about the whole hair thing.

The only thing getting me down today healthwise is my mouth. It tastes horrible as I'm sucking on the attractively named Fungilin lozenges four times a day to try, brushing my teeth at least 3 times a day and using Corsodyl mouthwash three or four times a day. All to stave off the mouth ulcers. Which is working but it means I've lost my taste buds (not just because of the strong flavours of all this flipping dental care but also because it's all dead cells in there. Nice....

So, when we're at lunch in 10 mins I will have to order something extra spicy so I can at least taste it. Yum yum.

Tuesday, May 29, 2007

The big shave

Firstly thanks to Steve and Marie for their swift comments on the last post. I deliberated all weekend whether or not to write about the fears and realities of becoming a cancer bore, just because if you're writing about it at great length... well, that should tell you something in the first place.

But it is a genuinely weird set of emotions to square up. To fear you may be boring, yet find you have nothing else to consume your interests, time and conversations with.

And yes, I did consider telling 'go fuck yourself' option, but I also know he was probably terrified about bringing it up in the first place. Criticising someone who is marked as different from normal because of a disease like cancer, having a disability, or even just a sexual preference has become such a minefield in today's politically correct universe that it must have taken him some courage to do this.

Having said that, as Steve says, it's not something I can just ignore.

And today I am sporting a headscarf which makes me look like I travelled through the Hindu Kush as a young yet daring debutante and now live in a delapidated old Chelsea mansion full of cats and smoke cheroots.

So I am not going to ignore it. I'm going to get it all shaved. At 5.30pm today.

My parents and R both passed on the task this weekend in an effort to persuade me that I don't look as abnormal as I feel, and they may be right, but this straggly old man hair that I'm left with in the interim is getting me down. Watching it fall out daily is no fun, and I lack the urge to hoover my house while it's still raining hair on a daily basis.

And a five minute trip at lunchtime has confirmed that my local hairdressers will do it for a tenner. So I'm booked in later today and it feels quite liberating.

Monday, May 28, 2007

Share and share alike


It's questionable, this business of being a 'cancer victim'. Most of the time, you just muddle along reacting to things in real time and coping because it's just the new normality.

I have hundreds of people tell me how brave I'm being, how they can't imagine what state they'd be in. This doesn't mean I don't appreciate the sentiment, but it makes me feel awkward and embarrassed when they heap this sort of praise on you. Part of me is cynical enough to suspect it may just be one of those phrases that we all fall back on in times of crisis. The other part of me squirms because I know I'm not remotely brave. To turn another tired old phrase, I'm just dealing with the cards life dealt me and anybody else would be doing just the same.

I also have lots of people, some professional colleagues or business acquaintances, who are embarrassed, uncomfortable or squeamish about the whole cancer thing. It might be because they hate talking about emotional things. It might be because they don't know me well enough and this disease manifests a new level of intimacy that feels inapproproate. Or it might be because they have some personal experience of cancer which prohibits them from being involved in mine.

But some, whilst only being passing professional acquaintances, have surprised me by being really curious about every aspect of this. Often I find out that someone they knew went through something similar recently so they know all about it and quiz me on how I'm feeling, how many chemos I've had, what my side-effects are etc.

Either way, I think I can tell pretty quickly which people want to find out more and which want to quickly and courteously check I'm okay and then move on to fresh topics of conversation. If people want to ask me, I am, it has to be said, not one to hold back. If people want to avoid the topic, then I shall steer us on swiftly to neutral waters. It makes no odds to me.

Which is why I was surprised, upset and concerned when someone I know very well professionally advised me that I might be 'sharing too much'. It was meant well, and tenderly delivered, but I was astonished and dismayed. It was suggested that there are some people who are afraid of asking how I am, because I might decide to 'share' the whole cancer thing in all its detail.

What stung about this was threefold.

Firstly, the humiliation that I may have actually lost my sense for knowing what people want to hear. I pride myself on being able to feel my way through a conversation and navigate a conversation with a relative stranger with success. It's sort of the essence of what I do for a living. Maybe the whole cancer thing had detuned my senses.

Secondly, the indignation of being accused of being too fast and loose with my cancer experience. If this hadn't been in a professional environment I may well have risen up, insulted, and defended my right to 'share'. Part of me wanted to scream 'How dare you presume how I should or should not 'share' the fact I have cancer?'.

(Incidentally, I hate the word 'share' - it's far too Oprah... but it's one of those words that has usurped all others and nothing better expresses what it actually means.)

My diagnosis, the operation and the current treatment, and the impact it had on our lives, is all still very recent. How AM I meant to deal with it all? Pretend the fact that I look increasingly like an old, balding Catherine Tate character, have three raw scars on my boobs, am still living in London and not Uganda, and am pumped full of poison every three weeks doesn't ever cross my mind while I'm at work? Should I stick it in a box for hometime and talk about it only to R? It's hardly realistic, and quite ironic given I work in one of the most 'people' oriented industries out there. I mean, it's not as if I work in a city bank. And what's more, I've worked there for nearly eight years so friendships have inevitably sprung up. And these friends are asking after me in a genuine way, sending me cards, checking if there is anything they can do, taking me out to distract me when I'm down, giving me generous and totally unnecessary presents. They don't SEEM to be tiptoeing around me, worried about asking 'How are you?'.

Ooh, you can almost smell the self-righteousness. But I was angry.

But thirdly, and this is what really concerns me, I was struck with the possibility that he might be right.

I might have inadvertently become a cancer bore.

Maybe having this bloody thing, and going through the rigmarole of chemo every three weeks, has given me some sort of cancer blinkers. I know I certainly hit a point just before Chemo One where I had cried too much, read too much, googled too much and talked too much about cancer.

I had got to the point where I bored myself with the disease.

It made me feel refreshingly normal when conversations with friends moved off 'How I Was?' and onto the beautiful mundaneities of everyday life, from spending far too much money on a new tent to house prices outside the M25. Normality was glorious and made me feel great.

But with creeping shame, I also remember that after a few minutes, I'd sometimes find myself with nothing to talk about and listen with horror as I heard myelf pull the conversation back to me and my litany of side-effects. The trouble with cancer is that it does rather take over your life for a while. Hijacks your normal routine and switches your focus, re-orders your universe.

Obviously I talk about cancer on this blog. That's the point. Well, the point was originally about emigrating to Uganda, but cancer has become the point of the blog. For now.

But do I talk about it too much in everyday life? Am I the brave but boring cancer battler that has nothing else to say?

Possibly.

Which is a horrifying thought and one I will be closely monitoring over the coming weeks.

Then again, if I am, does it actually matter? Maybe the problem lies with those who have a problem with it. They may be projecting their squeamishness onto others. If they don't want to hear about what's new in my cancer world, that's fine. But it won't stop me answering the question of those who are genuinely interested and concerned.

In the meantime, I HAD got to the point where I was boring myself. That was a few weeks ago. Since then, I may be dancing the merry Chemo two-step for the next few months but at least now I know that there is room to do things and live reasonably normally in weeks two and three of each cycle. Which in turn, will hopefully expand my conversational repertoire.

Because the thought that I may have nothing else to say terrifies the living daylights out of me.

Friday, May 25, 2007

An hour and a shower later



Pirates of the Caribbean, London-style...

Feeling better already.

Just call me slaphead



Two sleeping pills last night, asleep by 10.30pm, awake at midnight, asleep again fairly quickly after that, awake again at 4 on the dot and no sleep thereafter.

So so far today I've read several more chapters of Brooklyn Follies by Paul Auster, shared tea and breakfast telly with R before he heads off to some more delivery work today, and now I have time to update the blog before heading to the shower and then the office. Not sure how long I'll last later until I crash from glassy-eyed exhaustion but it's worth a go.

The bald patch, as you can see is widening. I am torn between holding on to what semblance of reality I can still create with a hat or bandana on (the back and lower parts of the sides are still quite normal looking when just poking out from under a cover of some sort) or just giving in and clippering the whole lot off to a grade 4 or some such length. Although as my mother subtly put it last week when trying to persuade me to consider a wig, "Britney is generally considered very pretty and yet even she looked dreadful with no hair".

My mother is not evil. She just has a serious case of foot in mouth, most of the time. And in her defense the comment is taken out of context - she was trying to persuade me to reconsider looking for a wig as she knew I was getting depressed about the hair loss.

But there's a 'Fuck you' element to the big shave which quite appeals. Fuck you to cancer, that is. My oncologist told me on Tuesday that one women she treated had a ceremonial shave with her boyfriend and a large bottle of champagne.

We're considering doing it in R's garden (less mess and the opportunity to recycle my hair for birds' nests) this weekend. Using a combination of scissors (get the length off) and my rather dubious 'Trim n Shave' Remington clippers which are designed for a totally different area of the female body. And no, that's not the legs...

Thursday, May 24, 2007

No sleep til... sometime sunday?


The steroids are at it again. Exacerbated by the fact it is warm in London right now and windows need to be open at night - so traffic, foxes mating and cats fighting form the soundtrack of my sleep, or non-sleep, as it turned out.

Up at 1.30am, then again at at whenever dawn was breaking (4ish?) and then didn't really get back to sleep after that. Feel groggy and slurred this morning as a result. Have managed to get the broadband working and do a smidgeon of work, but for now it's time to drag myself through the rest of the day.

A friend is visiting over lunchtime so it will be really nice to see to her and meet her six month old baby. I just hope I don't fall asleep on them!

R chose to sleep in the spare room last night as he had to rise at 5 today anyway for some delivery work he's scored. So I'm glad he wasn't lieing next to me cursing my insomnia as much as I was otherwise I may have been single this morning. He's driving an HGV for the first time since his test last year. Round the narrow streets of London town. He was a little apprehensive but I've seen him master a forklift in under 30s so I'm sure he, and our streets, will survive.

In the meantime, not sure whether to up the dose of the new sleeping pills tonight to make sure I get a good night's kip in before planning to hit the office again tomorrow (I'm taking the 3.75g dose of the new pills, instead of the full dose of 7.5g) or let nature take its course and see what happens. Don't want to spend the next three weeks getting off the pills again, but then I do need sleep.

It's a dilemma.

And one I am too fuzzy to contemplate right now.

Wednesday, May 23, 2007

Chemo vs Weeden, Round Two

Chemo Two, yesterday, offered a bit of a change of scene.

Last time I was in the Harley Street Clinic ward on Weymouth Street. This time I was in the day care centre on the first floor of a building round the corner in Harley Street. The buildings are connected by a rabbit warren of passageways and there are double staircases just to confuse you and make you feel like you're in some sort of Escher painting.



But it is a place where I know I'll find the welcoming face of my day care nurse. I've met her several times before, for blood tests last week and other routine stuff. It increasingly amazes me how much difference a smiley persson can make to this whole process and she is definitely one of the good guys. Ironically, later on that morning, I'm telling her about the whole Aubrey Bristow experience and she acknowledges that he may be brilliant as a surgeon, but she has heard his bedside manner's not up to much.

I arrive at 11, and have to face the portocath needle insertion. It's a long thick needle which has to be plunged into the centre of the portocath which sits just under my skin above my left breast. Last time I had Chemo it was inserted while I was under local anasthetic and sedation. This time, all the numbing I've had is from the Emla cream I was issued with. I was instructed to rub the cream on the area an hour before.

The job of sticking the needle in is offered to another staff nurse, a quiet Asian man who says very little. Several people ask him whether or not he's 'comfortable' doing this. Inside I'm panicking. Does this mean he's new to the procedure? Do I have the balls to stop him and ask for someone for experienced?

He looks nervous, and is hovering around preparing a tray full of items. He darts backwards and forwards to the desk and repeatedly checks what's in his tray in a way which borders on the obsessive. He really doesn't look like he's comfortable with this.

But when it comes down to it, he's not half bad. He twitches and prods and pokes to find the right spot and telling me to breath deeply when he inserts the needle. He's prodding for so long that by the time he gets round to it I'm panting like a well-fed labrador after a long run. But it distracts me enough, and the Emla cream seems to have done it's job, so that when he does the deed, it barely hurts. I can feel it, but boy is it better than being stabbed for a cannula.

So he takes some bloods, gives me the long cotton bud thing to swish around my nostrils to check for MRSA, and I'm sent on my way to see my oncologist.

Dr Alison Jones is another one of the good guys. We talk through my side effects, which involves discussion of constipation, burping, heartburn, stool consistency, pubic hair loss, balding etc. It's so downright base, and I'm not one for dressing things up, so we are constantly laughing only the way women can when discussing very private bodily functions. When I get to the bit about my pubes falling out, and desrcibe how I still look quite normal from the front but the 'undercarriage' is bare, she is laughing her head off. She confesses how funny she thinks I am and describes how a slightly more formal patient last week described herself as having a 'lady garden'. Which then cracks both of us up for a good five minutes.

Well, put it this way, my lady garden won't need pruning for a while. And I last shaved my legs and armpits last Thursday morning so there are some benefits.



Back down to the Day Care Centre and smiley nurse starts my chemo off. Usual system as before but some subtle differences. The drug that made me prickle inside and have the world's worst ants in my pants last time is apparently the Dexamethasone (not the Ondansetron as the last nurse told me). Smiley nurse says she can always tell when people get this reaction because she sees them squirming in their seat. So the Dex is now given as a bag, rather than pushed in with a syringe. This apparently dilutes its and lets it literally seep in, drip by drip, so I don't get the same reaction as last time. Which is a relief.

I get the Lorezepam given as a half dose, also by IV (not as a pill). Dr Jones knows of my issues to come off it and is keen to help me stay off it. For this week's bout of steroids she has given me some alternative, less addictive sleeping pills...

Then onto the epirubicin and at some point R arrives, rucksack on his back, fresh (or not so fresh) off the coach from Hereford. Immediately the mood is lighter and he's joking and distracting me and I barely notice the rest of the treatment. He reads this occasionally, and I don't want his head to swell too much, but he does make a huge difference.

Back home and we rest, eat, watch Bad Santa and the last episode of Peep Show. I feel very faintly nauseous but it never amounts to much. I pop several of this cycle's pills, and we head to bed.

But only once I've hoovered all my hair off the sheets and pillows.

Monday, May 21, 2007

Mood swings? What the **** do you mean?


I knew the hair loss thing would be hard but at first it was just a novelty.

'Look how much comes out' I'd say, as I lightly pulled yet another clump out for the benefit of onlookers.

(And I spent all of Friday at a wedding, and Saturday at friends' for a barbecue, so there were a fair amount of onlookers.)

It was my way of meeting it head on (is that an unintentionally bad pun?) and making light of it.

Only trouble was, I'm properly balding now. I can no longer hide it with the female equivalent of a combover (putting sunglasses on your head so they sweep the longer, still existent hair from the front, back over the bald patch).

So today is the first proper 'hat' day. Hence the photo. Which neatly showcases both the hat and my mood.

I was doing fine, acting the balding fool, and then yesterday I had a complete meltdown. I ran my hands over the pillow and the sheets collecting the hair and amassed a huge ball of the stuff. It was all a bit much for me. I then made the mistake of calling R at my lowest point to discuss bikes I might be buying with him and ended up crying down the phone at him. That was followed by my parents calling so they got caught in my own little tsunami of self pity as well.

I'd been feeling so well this week and so positive about having got through Chemo 1 that I haven't cried in a long time and it took me by surprise slightly.

I think tiredness has something to do with it. Feeling so good over the last week means I have met friends for lunch, friends for dinner, worked late on pitches and lived it up at weddings and barbecues. I've had a great time, and felt refreshingly normal, and don't regret a minute of it. But I think it might have been slightly foolish to cram in quite so much socialising into one week. It's lovely but draining.

Especially when at the end of it all it was time to come off the sleeping pills. I've been on half pill (0.5mg) doses for the last week and the sleeping has evened out. So come Friday it was time to kick the habit. Helped enormously by the fact I was staying over at a friend's house after the wedding and forgot to bring the tablets with me.

So, Friday night saw 4 hours sleep. Saturday night saw 5-6 hours followed by several hours lying in Sunday morning and dozing on and off to make up the difference. Last night saw about 5-6 hours. It would have been around 4 but when the alarm went off to get up for work at 7am I mutinied and reset it for 8.30am, turned over and went back to sleep.

Sleep deprivation is a horrible thing and I am pretty rubbish at dealing with it.

Chemo Two is tomorrow and I suddenly feel emotionally and physically ill-equipped for it. That wasn't part of the plan. Bugger.

Saturday, May 19, 2007

My bald patch



Here is a photo of where I am today with the whole hair loss thing. I'm balding in a curiously 'male' way. Mostly from the top middle and a little bit from the sides.

And my hair hurts. It's like when you used to undo your bunches after your mum had tied them far too tight and the roots really ache.

I can't wait for it actually to be gone. If R was here this weekend I'd have got the razors out already... But it will have to wait until Tuesday when he gets here for Chemo two as he's busy working all over the place at the moment.

Stayed the night at my friend's house after her wedding yesterday. Had to leave her a note this morning apologising for making the spare room "hairy". I tried to scrape up my moultings off the pillow and the sheets but I really needed sellotape or one of those sticky rolls dry cleaners sell for removing lint and fluff.

I realised I would lose my hair, I just didn't factor in how much mess it would make in the process. I had to apologise in advance to the people sat either side of me yesterday just in case I shed any hairs into their food.

But it was a good wedding. And I stayed up way past bedtime and feel like poo today. Hangovers on Chemo, even on a week three, are not a good idea...

But I took loads of photos and a few of them have turned out quite nicely.... here's one of the bride half laced up...

Friday, May 18, 2007

Hair du temps


Must stop pulling out my hair.

You'd think the last thing someone who's losing their hair would do is pull it out but there is something slightly obsessive about it. It falls out easily when I run my hands through it, in fact, more and more of it falls out every time I run my hands through it.

And it's so tempting to sit there and repeatedly run my hands through it, building up a big pile of hair that looks like the floor of a hairdresser's after you've had a quick trim. I sweep it up with my hands and bundle it into a little ball. Then I throw it in the bin.

It's only the longer hair on the top and sides that seems to be falling out. Occasionally I get a shorter hair or two from the back but that's rare. The short stuff seems to be hanging on for dear life.

But the long hairs fall on my desk, my keyboard, my plate when I'm eating, the table in a meeting, the kitchen work-surface when I'm making a cup of tea, the sink when I'm brushing my teeth, and strangely, when I get up from the loo, turn around and press the flush, I see strands of hair on the seat and in the bowl.

So, it's sort of easier to encourage it a bit and help it along. There is something about wanting to get on with the process. Having a full head of hair is ok. Thinking about having no hair feels like it's going to be ok. It's just the inbetween bit that's less than bearable.

But, by starting with the benefits of a full head of hair, if you didn't know, and you passed me in the street, you wouldn't notice. But I am starting to see the loss. The naked bit of skin that lies in between my parting is significantly wider than it should be. The sides are looking thin.

It's passable for the wedding sans chapeau tomorrow but at this rate, I think I only have a few days before it gets too mangy looking.

And then, it's time for the biggest shave of my life.

Thursday, May 17, 2007

Unwanted houseguests


I've known I've got clothing moths in my wardrobe for a couple of weeks now. They've been fluttering around for a while (everytime they flutter too near to me I crush them into dust in a karate kid manouevere) and I ordered some stuff on the net a week or so ago which I plan to use this weekend. Fumigate the hell out of them, and me in the process no doubt.

However, last night I discovered I had another unwanted guest.

Whilst I was sat on the sofa watching The Apprentice (the advertising agency episode - couldn't miss all the pretentiousness being lampooned by Alan Sugar) a small house mouse ran across the floorboards, had a sniff of the Scrabble board and then scampered out down the hall towards the kitchen.



He's either JUST moved in or has suddenly taken a big bravery pill, because despite me obviously being in situ on the sofa he repeated this move at least three times, bold as brass, his little nose twitching away.

After the initial heart skipping moment when I thought "There's a mouse. In my house. Should I be tucking my feet up and screaming at this point?", I realised I thought he was quite cute and my heart sank as I thought about how I would have to 'do something about him'.

Humane live trap and then drive him to Clapham Common and release him into the wild where he will curse me roundly until he gets eaten by a fox or dies of exposure. Or kill him with poison or a mechanical trap? Or get a cat round and let someone else do the killing for me?

Crushing clothing moths in my hands seems acceptable but its amazing what a cute sniffly nose will do for an animal's survival rate in my house...

Maybe I can keep him?

The other hideous realisation that all of this brings on is that I need to clean my flat, more often.

Dammit, life's too short for housework.

Wednesday, May 16, 2007

Chemo as currency and Chemo vs Pregnancy

My boss, who sits only a few feet away, turned to me at five past five and said, "what happened to the document for the AAR?" (an important consultant who you do your best to bend over backwards for, and certainly don't forget to complete documents for when they were due in at five pm).

"Fuck", was all I managed.

Well, thats a lie. I think I repeated myself several times. I'd forgotten it. I felt completely incapable and stupid and all due to the bloody chemo. All this talking about chemo brain and so far, it hasn't landed me in any real trouble, but here I go forgetting a vital deadline.

My boss was great. He didn't say anything. To have been critical would have been bad. To have been "sympathetic" would have been even worse. He simply looked away and pretended not to listen as I called the consultant's assistant (who is lovely and knows all about my having BC) and explained myself.

But it somehow felt like I was taking advantage of the fact I had breast cancer, seeking special treatment etc. But I genuinely forgot a document which normally I would have rattled off to them early!

A few weeks ago, I was still angry enough not to care and would happily blame BC for anything I could. But now it seems a little harder to use it as some sort of currency and feel honourable about it. Even if all I'm doing is being truthful.

I feel genuinely like I am through the worst. I may change my mind this time next week when it's day one post chemo two, but emotionally I definitely feel like I've turned a corner. A lot of this, I am sure, is to do with having got through chemo 1 and thereby conquered the fear of the unknown.

Had dinner with an old friend last night and we talked a lot about this amongst many other things. She was 8 mths pregnant and we discovered that chemo and pregnancy were quite similar states. You lack the mental agility you had before; You can't eat runny or blue cheese; You can't eat raw or uncooked meat; You can't eat probiotic or live bacteria products; You're tired all the time. We were more or less equal scores but she did have the massive bump on me.

Never mind, I'll even things up again once the hair goes. On which note...

Hairwatch today: Falling out randomly a little more (lots of stray hairs on my desk, on the boardroom table, on my t-shirt) but am learning to run my hands through it less 'just to see' if hair loss was accelerating so I think I've lost no more than yesterday overall. Which means that I'll probably be ok for the wedding on Friday. Happy about that.



Sleepwatch today: Woke at 5am and dozed fitfully after lying awake for a while. It was 5.30am yesterday. Am on the half mg size lorezapam to try and wean myself down to going cold turkey by the end of the week but the body is fighting it... All in time to go back on the steroids after chemo two next week and suffer really bad sleep, or face going back on the pills full strength again. The extra added irony is that R is enrolled on a sleep study, to make some money whilst being more London based with me, and is being monitored for his sleeping habits and periodically fed sleeping pills. We're both going to end up a couple of sleeping pill junkies...

Tuesday, May 15, 2007

Just because it's FA Cup season

If you have kids, and they're into football, buy this book.


Or, indeed, its sequel.

It's by a friend of mine who's really some massive stats computing science boffin but hides it well under an exterior of football fandom, bad puns and a penchant for drinking red wine on a Sunday afternoon.

I gave a copy to my little brothers and they loved it.

Plug over and out.

How to dress for breast cancer


Ha! When I was first diagnosed I did what every self respecting bookworm would do and ordered a bunch of books from Amazon about breast cancer. They included a very sappy account by an American news anchor, plus the rather better Take Off Your Party Dress by Dina Rabinovitch, the Guardian Journo.

While I was reading the latter R laughed his head off at the back cover. It said something on the back like "When I found out I had breast cancer I called the editor of Vogue to help me work out what to wear". Unsurprisingly, R thought this rather vain and girlie, and ridiculed me for buying the book.

In my defence, Amazon's website does not yet allow you to read the back covers of books.

In Dina's defence, I suspect that line was forced upon the back cover by a publishing house trying to position this as a book for Grazia readers and 'gels about town'. When really there's no fashion advice in it at all and it's quite simply an honest account of someone's introduction to having breast cancer. In which, just once, she does mention the fact that it's hard to pick out the right clothes to wear when you cannot lift one arm up and only have one tit left. She has a point.

Counting my lucky stars, my arm lifts okay and I still have both boobs. But I am facing a certain dilemma.

On Friday I have the wedding of a very good friend, so a chance to dress up beckons.

I am also meant to be taking lots of photos for her at said wedding, so I need to dress up in an outfit that allows me to bend over and crouch down without showing all the guests my knickers.

I have just the outfit.

Only trouble is, it doesn't come with a hat. And I cannot imagine it with a hat. And despite looking around John Lewis a few weeks ago, I'm not sure there's a hat out there to go with it.

Which would not be a problem if it were not for the fact that the hair loss is stepping up. No noticeable chunks yet, but it's thinning. If I run my hands through my hair I'm left holding a small handful of hairs.

If it continues just thinning at this rate I might be ok for Friday. But I'm not sure if I'll wake up tomorrow and discover I've lost half my hair overnight. And I don't want to go out and spend a fortune on a new outfit just in case...

It could happen on the day. That would certainly draw their attention away from my knickers, at any rate.

So I've decided worrying about what to wear when you have breast cancer is completely legitimate (scornful boys beware...).

I mean, how DO you plan your outfit for a wedding when you're not sure if you're going to go bald within the next 72 hours?

It's so ridiculous I'm actually finding it quite amusing.

Monday, May 14, 2007

Where I should be


Running around at work today, too much to do but feeling good because it's week 3 and I'm full of energy, it could be easy to forget where we were meant to be right now.

Somewhere in Uganda, where the hippos grunt their booming laugh, trying to work out how to run a backpackers' lodge.

A couple of weeks ago, in order to remind me of where we want to be, while we go through the routine of chemo, I ordered a massive framed picture of an old map of Africa.

It may not be a politically correct, or even geographically correct map (Uganda appears to not have been discovered when this map was drawn) but it's sitting on the desk to my right waiting to be hung on the wall, where it will stay to be looked at longingly from time to time.

And it finally gets something on my living room wall. It's been 18 months since I bought this place - you'd think I'd have got round to it sooner.

Watching for the Indians from the wrong side of the fort


It's day 12 in the Big Chemo house and the hair loss has started.

But not from where you might expect.

Put it this way, I should have complemented the ice helmet with a natty pair of ice knickers and then maybe I wouldn't be in this situation...

Ah well, saves on the upkeep.

Saturday, May 12, 2007

Sweet dreams of Sardinia


This week my sister finally booked her big round the world trip. Well, round South and East Africa and the Far East. Her boyfriend has managed to swing a career break from his job (of 8 mths) and she has given up hers, and they are off on August 7th.

Cape Town, South Africa, Mozambique, Namibia, Botswana, Zambia, Tanzania and Kenya. Flying out of Nairobbery in early November to the Philippines and they then have more than five months to swan around the archipelagoes of South East Asia before flying out of Bangkok at the end of April 2008.

Envious?

Yes.

But we did laugh about the fact that when she returns, she will have to face the reality of settling done again and getting a real job (oh how we hate 'real' jobs) and about this sort of time, if everything works out well, R and I may well have Africa 2- The Revenge planned and in action.

So hopefully we'll pass the baton of adventure between us and then it will be my turn.

In the meantime, she's my sister, we get on great and I'm going to miss her like crazy. So I came up with a wonderful plan.

Her and me, long weekend, hotel on a beach, Sardinia.

Ryanair were obliging with flight deals, the time works to fall right before a chemo at the end of a week 3, and the hotel, whilst not cheap, looks lovely and perfect for two girls to relax and chill out with drinks by the pool under the hot Sardinian sun.

I'm not sure if it really competes with the big trip, but I think my sister is secretly quite excited as well.

Friday, May 11, 2007

Sweet chemo dreams

For the record, the dream that woke me up this morning featured me being injected simultaneously with 12 big needles which in my all-knowing dream state I knew to contain 12 different types of virus and disease.

My subsconscious is obviously coping well then...

The source of my forgetfulness (and crankiness)


There I was, yesterday evening, still feeling perky, meeting with good friends for a drink and a pizza, feeling normal.

Then at 4am this morning I'm staring at the ceiling again, trying to sleep. My mouth hurting so much from the ulcers which have set in and are only getting worse, my brain reeling from the dream that woke me up, and my boyfriend creeping out to the spare room to get some sleep in a place where your bed companion isn't tossing and turning all night.

So today I am in a thunderous mood, having had about 4 hours broken sleep, far too much work to do because I've started picking stuff up again now that I've been 'normal' most of the week (and there's simply a hell of a lot on) and anxious about the prospect of having my stitches taken out later today.

It's my own fault. I decided not to take a sleeping pill last night. Other than last Friday and Saturday (when I also woke up at 4am each night and couldn't get back to sleep), I've been taking the Lorazepam religiously every night at 11ish and getting a really sound night's sleep. But then I should get nothing less for something which is 10 times the strength of diazepam (this being the 'Mother's Little Helper' in the Stones' song). Last night, having had a few drinks, and not wanting to stay on the massively strong and easy to get addicted to Lorazepam, I decided that I would try another night without it.

But clearly that was a foolish idea.

Better ask a doctor later if they can get me onto diazepam, or something that is less strong than lorazepam, in an effort to wean myself but maintain reasonable sleep patterns...

But at least I know where chemo brain comes from:

"Among benzodiazepines, lorazepam has relatively strong amnesic effects,[37] but patients develop tolerance to this after a few days of regular use. Long term therapy may lead to cognitive deficits, especially in the elderly, who may already be more prone to forgetfulness, but this is reversible after a period of discontinuation."

Cognitive deficits? Get me a safer drug!!!

Wednesday, May 09, 2007

Hyper-real


Bouncing today. Simply far too much pent up energy. It's very strange.

The fog has lifted and I am me again, only hyper so. If this is week 2 on chemo cycles for me, then I'm not complaining.

Yesterday the hospital summoned me because shortness of breath and a constricted feeling in your chest can be a sign that you have developed a clot from the portocath procedure. They waited before I got to the hospital before telling me this, which saved me all day worrying at least.

They did some tests, which consisted of: more bloods (ow) to do counts of red/white cells and platelets; plus temperature (just under 37 degrees - my home thermo read 34.5 that morning so it must be callibrated wrong...); plus 'SATS' (oxygen saturation levels if you must know - getting to know the medical shorthand makes me feel like I'm starring in my own episode of ER...); and stethoscopes all over my chest and back and under my arms just to check my breathing.

Turns out I'm ok. No clots, no thrombosis, no death. Hurrah.

The shortness of breath is a normal chemo side effect (lack of red blood cells means less oxygen being carried around at the crucial moments when you need it... climbing stairs... having sex... etc) and the feeling of being constricted is actually nothing to do with my airways. It's my food pipe. I have oesophagitis. An inflammation at the bottom of my food pipe. Due to the excess acid caused by the steroids which are given to avoid nausea. This explains the heartburn, which is a symptom of the oesopagitis.

So I was sent home with a sore elbow from the needle and a bunch of new pills to take daily. Not even going to bother to learn what these are called. My brain can't cope with new pill names.

When you get to the stage when you are being prescribed drugs to counter the side effects of drugs which are prescribed to counter the side effects of drugs which are prescribed to counter... you just can't remember where you started. Oh yes, cancer. That was it...

It seems I've done more drugs in the last month than I have in my entire misspent youth.

Don't get me wrong, I've never really overdone things and haven't even tried half the stuff that's out there. But I've dabbled.

Lord knows when you work in advertising it's virtually part of the job description at certain levels and in particular agencies.

Drugs for me, when I did indulge, used to be a naughty, rebellious, but ultimately FUN thing to do when you were young and had a clear weekend ahead of you. It was before I started to favour curling up in front of a bumper episode of Have I Got News For You of an evening.

Now drugs are just a regimen, a routine, a foul tasting sweetie bowl full of the horrible anticipation of constipation and heartburn. Oh how times have changed.

Tuesday, May 08, 2007

A touch of the breast cancer


I've been feeling much better the last couple of days. The bottom is almost back to normal (you'll be relieved to hear) and have actually had a full night's sleep last night (aided by drugs, but hey, I'm not proud...).

The fuzzy headedness has more or less gone. But I still lose track of things halfway through a sentence, and if I walk into a room to do something, I have to do it there and then or else it gets forgotten. Very quickly... Read of someone else's FEC chemo experiences yesterday and she described it as 'Chemo Brain', which I already have started using.

Actually spent yesterday out and about a bit, in the blustery half-sunshine-rain of our bank holiday weather. Met my parents and my little brothers (the former supervising the latter on some pony thing in the middle of a big field on the Worcestershire/Herefordshure borders).

Max, who's 10, said "You're hair hasn't fallen out yet then". Little brothers. They're great...

Seriously though, it had been troubling me as to how much, or how little I should tell them. They are young, but old enough to notice all is not well and I keep turning up with dressings affixed to various parts of my body. And even Max has learnt to stop inviting me on the trampoline with him (he just likes the fact my weight makes him bounce higher) so they know something's up. And when the hair starts going, it will suddenly be very obvious.

I also remember, how growing up, my parents would sometimes, rightly or wrongly try and shield us from stuff we 'didn't need to know'. I remember finding out we were at war with Argentina during the Falklands conflict by overhearing some kids talking about it down the stables. Which was weird. It worried me more that they'd tried to hide this from me (or more likely, just assumed I wouldn't be interested).

Anyway, I had decided to check this weekend to see if they knew enough about what this whole breast cancer thing was. If only so they wouldn't piece together snippets from the media and from school and come to the conclusion that I'm done for.

I spoke to my parents about this first, and my Dad mentioned that they'd picked up on it sooner than expected. Apparently, a month ago, Max turned round and asked 'What exactly is cancer, anyway?'. That stumped him for a moment but they decided to tell them all about the fact that I've had "A touch of the breast cancer" (my mother's words - she thinks she's doing post-modern suburban gossip irony) and explain what Chemo is all about. So I didn't need to go into detail with them but at least I can speak freely to them about it and not worry about what assumptions they might leap to.

And another thing... Whilst feeling much better, I have, since Sunday evening, felt like someone is standing on my chest. Physical activity left me feeling like I had the lung capacity of a hamster. This feeling continues, despite taking it very easy up stairs etc and it actually hurts to talk at my normal speed. And the indigestion I'm still experiencing makes this feeling of constriction even worse.

So when I called the hospital this morning to fix a time to get my stitches out, I decided to mention it. And they've summoned me in for tests and blood counts and checks. Could be a portocacth complication, could be the start of some dreaded infection.

Either way, it means I have the perfect excuse to opt out of our office trip to the Bingo tonight. A bingo hall is bound to be like a petri dish of bacteria for the average chemo patient. So it's sensible I stay away. But oh how I love to play housey housey...

Shame.

Sunday, May 06, 2007

Greek Style Yoghurt; Normal Style Life

Day 5 after chemo and the fuzziness still comes and goes. Sometimes it clears and I feel more or less normal, but othertimes it's back with such a vengeance that I cannot actually hear anything much because my head literally feels blocked up. I keep having to ask people to repeat themselves, which makes me feel particularly stupid. And a quick drop in to Sainsbury's yesterday took about 30 minutes as I struggled to remember what made up a meal.

The main thing is, being in chemo is surprisingly mundane. I thought it would become the most violent and tangible mainfestation of having cancer, but really it is like being inside the eye of a storm. My daily life is spent looking out for the most minor of changes in symptoms and the mundaneity of this is making me feel rather dull.

I am lucky, I seem to have got through chemo I without any major mishap or nausea reaction to the drugs. But there are a myriad of smaller side-effects, none too interesting in themselves, and most generated by the peripheral drugs they give you to counter the major side-effects, but add them all together and they aren't THAT fun. And watching for every tiny difference in my bowels and giving R a running commentary on the whole thing is not the most crowd-pleasing. My cancer is not the knife-edge, bedside-drama I assumed on first diagnosis that it could be, for which I feel very grateful but rather dull all the same.

A few strands of hair are falling out when I put my hands to my head, so I need to be ready for that. I'm not sleeping well, but hoping that will settle down once the effect of the steroids wears off (last one taken yesterday lunchtime and I've been dodging the optional sleeping pills the last two nights which may explain why I've been waking at 4am unable to get back to sleep). I'm glassy-eyed and fuzzy-headed, but most of all I am obsessed with my bowels. Always relativey scatalogically interested, when you've not had a proper poo for four days the slightest movement gets celebrated and publicised. It had got so bad that on Friday I felt like I was, well, backing up. Indigestion and heartburn meant I was burping air out the top end. I decided it was time to do something about the other end as a direct result.

If you're interested, adding figs to your muesli, baked beans on a baked potato and a punnet of grapes will do it.

So chemo is turning me into a balding, farting, sleepless, fuzzy headed idiot. Lucky old R.

But the upside is I can still more of less function, I think. As long as I get on top of this sleeping thing. I actually went out and met up with a few friends on Friday night, in a noisy old pub on Fleet Street. The relief at being able to do something normal like that after a day at work where things went relatively ok felt wonderful.

Just finished breakfast of Greek Style Natural Yoghurt and Strawberries and Seeds. It took me ages to find a plain yoghurt without the live bacteria in it (banned when on chemo as your gut would not cope well, apparently). Having worked in advertising all my life I know what they mean when something is called 'Something-Nice-Sounding STYLE Thingie'. It means it's not the Something-Nice-Sounding thing at all, but something else completely unrelated to the product you think you're buying. I used to avoid these things like the plague, now I am searching them out!

Thursday, May 03, 2007

C is for Chemotherapy


After my late late lunch of smoked salmon sandwiches and fruit salad, my little nurse busies herself readying the chemo paraphernalia. In comes a scientific looking drip stand, with buttons and a touch screen. In come those recycled paper trays they use, filled with syringes. Two small clear ones (the pre-meds: Ondansetron, an anti-emetic; and Dexamethasone, another anti-emetic and dreaded appetite-inducing steroid), four beautiful raspberry coloured big ones (the evil epirubicin, remover of hair and stimulator of nausea) and two small bags of clear fluid (the fluorouracil and the cyclophosphamide).

I am given a lorazepam (a sleeping tablet) to chill me out before we start proceedings and another nurse comes in to fit the ice cap. It’s a gel cap, like a swimming cap, that’s been in the freezer far too long. She pulls it over my head (always had a large one) and then fits a neoprene swimming hat over the top. Both have chin straps. R takes photos with his phone. Nice.

The cold is not overwhelming. In fact it is better than expected. I can do this. This will be alright.

I have taken note of what I have been reading. Dina’s book talks of the nausea associated with chemo having such a Pavlovian response on her viewing habits that she can no longer watch some of her favourite programmes – those with which she thought she’d distract herself in the early days of chemo. So, keen not to rule out my favourites, but wanting something to distract us during the chemo, we resort to the armoury of free downloads I made in preparation of rainy afternoons in the middle of nowhere in Uganda. It’s a shame of course, that they are not being used for their original purpose, but it seems a perfect purpose now. Zoolander is first up and on the ibook. Writing this two days later I cannot remember any of it. So the sleeping pill certainly succeeded in making me suitability drowsy.

Then we start. The nurse sits by my bed and fixed up the Huber needle already inside my Portocath (they inserted that as part of the procedure) to the drip. She draws up some blood to check the valve is working both ways, which it is, and then sticks a flush in. She follows this with the Ondansetron.

Immediately, there is a prickling sensation inside my chest. The Portocath goes into the main vein near my heart so this is some sort of reaction just where the drugs first enter my body. It intensifies and becomes quite unbearable. What’s worse is that it descends down to my groin where it feels like the worst ants in your pants imaginable. I feel like jumping off the bed and plunging my arse into a bath of cold water. I feel like jumping up and giving my crotch a good scratch. I can’t do any of these things because I am plugged into the machine and I am also embarrassed. The nurse is asking me where the pain is and what it feels like. All I can muster is that it’s “Like fire ants, in my front bottom”. I feel infantalised. Front bottom? Am I three years old?

But as soon as it starts, its over. 30 seconds is all it took. I relax and we talk about why / what / how. I remember that just before passing out on the general anaesthetic for the lumpectomy my anal area suffered a strange prickling sensation. Maybe I was also given ondansetron then? Apparently, it’s possible. Then again, they say this could be a reaction to any combination of the drugs I’ve had for the portocath insertion, and not just the ondansetron. Or a reaction to the first drug ‘down the tube’ of the port. Who knows? It’s slightly un-nerving that the medical establishment does not have a fixed answer for this but I guess if 30 seconds of ants in your pants is all it takes to avoid nausea then I can cope with that.

The next pre-med glides in smoothly with no incident and then we’re onto the ebirubicin. The raspberry liquid is pushed ever, ever so gently into the tube. The nurse takes great care and is watching me closely all the time. This, I guess, is the moment where she may need to suddenly offer me a sick bowl. I suddenly realise that’s why she’s carried the syringes here in so many paper trays. These are the sick bowls.

But I feel nothing. So I carry on breathing quietly, one eye on Zoolander, the other on the nurse. Maybe if I stay very still the drugs won’t get me.

Time passes, ice caps get changed, the raspberry syringes get disposed of. We make it through the epirubicin and move onto the bags. These go in with no problems and suddenly it’s all over. I feel tired (operation, sedation, sleeping tablet – I guess this is no surprise) but immensely relieved.

I have made it through Chemo I. I have not been sick. I feel tired and fuzzy but okay. There is a quiet euphoria about this. I feel like I can do this.

That night the fuzziness and sedation really kicks in. I call and text various people to let them know I am ok and that it wasn’t so bad. In between calls and texts I drift in and out of a half-sleep in front of bad TV. Half an hour after calling my Mum I find myself thinking “I must call my Mum”. I sit there, in the hospital bed, trying to kick start my brain into remembering whether or not I have already called her. I cannot remember and have to use my phone log to tell me. This brings home to me quite how dopey I am and so I have a peppermint tea and resolve to write up some of what happened today before I forget it all. Hence such lengthy posts.

Two days later and some of the euphoria has worn off. I feel tired but cannot sleep without the sleeping tablets they have given me. The steroids make me feel like I’ve drunk far too much caffeine with none of the pleasure of enjoying a decent coffee. I am alternating between wired and tired. My chest hurts around the port insertion. When I lean forward, gravity hurts. Is this because the port is titanium and therefore heavier than flesh? It pulls down on me, making it hard to bend from my middle. And I occasionally get a flash of joint pain (that will be the expensive Neulasta, at £1100 for 6mg, making my bone marrow grow).

I stayed at home today and took hours to read through a document for work that would normally take minutes. The hardest side effect so far is not the fatigue but the fuzziness. My head feels wrapped in cotton wool and the wheels of my brain move slowly. My short term memory is decimated. I start sentences and then cannot remember what point I was going to make.

Tomorrow I will go into work, but who knows how much work I will get done.

Another hospital, another day

(THIS POST HAS BEEN RETROSPECTIVELY EDITED AT DR BRISTOW'S REQUEST.)

The night before being admitted to hospital for the portocath and the chemo we stayed up relatively late with R watching Ricky Gervais on the TV while I curled up next to him reading Dina Rabinovitch’s ‘Take off your party dress – When life’s too busy for breast cancer’.

(In which I found out how chemotherapy treatment for cancer was discovered. Apparently, after autopsies on mustard gas victims from WW1, scientists discovered that the had stopped the bone marrow growth and the bodies had low white-blood cell counts. They then realised they could use the same stuff to stop cancer cells growing.)

I tossed and turned all night, the double fears over the portocatch procedure (does local anaesthetic mean you can’t feel anything or could I still feel them cutting into me?) and the chemo (must try not to watch any favourite programs – apparently the conditioned response can be so strong that months later people can hear the opening bars to Friends, or The Sopranos, or whatever does it for them, and the flood of chemo-remembered nausea return).

So this morning, it’s stressful and disorganised. I wake at 7am because for some reason the radio alarm is going off in the kitchen. Turning that off, I take the opportunity to squeeze some toast in before I go Nil by Mouth after 8am. Back into bed at 7.30 after toast (and my increasingly punctual morning appointment with the loo) and grab about 20 minutes before the phone beeps a text at me. It is the first of many lovely good luck messages from friends and family. I smile at the text and feel all-warm inside. Then I callously turn the phone to silent – I need another hour’s sleep at least.

I’m half aware of R getting up and then fall into a blissful slumber with no fearful dreams popping up. He then wakes me properly at 9.30, offering me muesli. He’s forgotten about Nil by Mouth, but I remember just in time and say no. However my bottom is deciding to ignore both of us and off I trot to the bathroom for my second poo of the day. This isn’t diarrhoea, or nerves. This is my new high fruit and fibre diet ruling my life from the central bunker of my arse.

Ah well, Chemo makes you constipated so it will be swings and roundabouts throughout this treatment I would imagine.

A little later my Breast Care Nurse, Clare, calls. Probes gently as to what time I was expecting to come in. Everybody has told me 12 noon to go to the ward. And the last letter from Alison Jones, my oncologist, suggested she “would catch up with me then” leaving timings rather ambiguous. I’ve assumed she meant she’d see me around the ward when I was in for the Port and Chemo I. But it seems she was expecting me in for a chat first thing. Oops. I know I am not responsible for this fuck-up, but I still feel like a naughty schoolgirl who’s missed a class.

Eventually I am nearly ready to leave the flat. Bags packed. Ipod charged. Books and magazines that I won’t get round to reading, pyjamas with easy-to-get-on-and-off tops and most importantly, big knickers. Thongs and hospital gowns they do not mix.

But as I am almost walking out the door I get an urge to clean. I start washing up and then try and explain in garbled instructions to R where the mop and the new floor cleaning stuff is. I’m racing around wondering if I can hoover the hallway in time. I think I’m stalling.

Eventually R forces me out the door to get moving. He’s following on the bike. I head for the station and buy a ticket. At Waterloo, it’s now 11.45 and I am cutting my 12 noon admission time fine. I decide to grab a cab because that would be quicker than 4 tube stops followed by a 15 min walk. Except that it’s not. I’ve been in the cab 15 mins and we have made around the back of Waterloo and are now stuck in very stationary traffic outside the main entrance of the front of the station.

I chat to the cabbie about traffic. ‘It’s May Day love”.

Shit! I had forgotten the May Day rallies that usually take place every year, creating traffic mayhem. A cab is certainly not going to be quicker.

“I don’t know” says the cabbie “They were all so bloody keen to get into this country and now they’re all so bloody keen to tell us what’s wrong with it. Doesn’t seem right to me.”

That’s it. If I’m going to be late for my admission today I’m not about to do it in the company of a xenophobic, immigrant-hating cabbie. I also suspect he’s wrong. They’re not the ones protesting. They’re too busy to go protesting. They’re busy doing all the jobs the protestors and the rest of us cannot bring ourselves to do.

So I hop out, back down into the tube, Jubilee line to Bond Street where some woman is eating a samosa right next to me, causing my stomach to grumble and my lips to salivate. I fantasy tearing it off her for a moment. Then the tube slows and it’s my stop.

Up at ground level I hail another cab, because it’s now 12.20 and I am late, late, late. Plus I am not sure whether I am on the North or South of Oxford St and which way to start walking. Why has this morning been such a shambles?

Five minutes later, the second cab drops me off at The Harley Street Clinic on… Weymouth Street. This does make sense – it’s just overflow buildings. They are all connected inside apparently.

R turns up at 12.40. He has had his own nightmare trying to find a bike bay spot free. Unless you’re parking before 8.30am or after 6pm this is pretty much an impossible feat and he has circled the hospital several times already before finding a bay with a slither of a space to slide into.

This hospital feels more traditional than the Princess Grace. This is all dark woods and blue leather Chesterfields. Lots of copies of Country Life neatly stacked reception but no trashy mags. That’s the difference between private and NHS right there.

The sign at the door sending people to check in with reception is written in three languages. English, Arabic and then a script which is either Greek or Russian. My bet would be Russian with all their new rich.

A porter comes and takes us to my private room. More clinical than the Princess Grace but most of the same mod cons; toiletries in the en suite; decent menu order forms waiting to be filled in; flatscreen on the wall. But the air con doesn’t work and there’s no online access.

This might sound picky but an overnight oncology stay clocks in at £1,157 in this place. And that doesn’t include the cost of the chemo itself or the portocath procedure. The neulasta injection alone, scheduled for tomorrow (a booster to bone marrow growth given 24 hrs after chemo) is apparently worth more than £1,000. I am constantly astounded by how much this treatment costs, and suddenly understand how NHS fundings disappear into black holes as far as providing the best treatment for their patients is concerned.

I’ve not been in the room longer than a minute (the porter hasn’t even had time to leave) when there is a knock at the door and a small, cheerful Chinese nurse with an impronouncable name comes in. She sounds like she is called Shayo, but I’m never quite sure if I have remembered it correctly so I develop a habit of sneaking a peek at her name badge before addressing her. Unfortunately the name spelling does not help. It is spelt something like Xiaoan. She’s lovely, and really helpful, but I’m embarrassed to try and use her name in case I get it wrong.

Mind you, she had just as much trouble with pronouncing ‘Anne-Marie’.

They were expecting me at 12 noon. With my lateness and having waited downstairs for 20 mins, it is now 12.43. My operation was originally timetabled for 2pm, but it has been brought forward to 1pm. Which gives us 17 minutes to go through the prep, paperwork, consent documentation, final questions with the surgeon, getting changed into hospital gowns, and making my way down to the basement area where theatre is. It suddenly all feels like a bit of a rush.

She asks me the normal questions and writes out not one, but two, hospital bracelets for me. As she fits them around my wrists I crack a poor joke ‘Is this in case one of arms falls off during my operation’. She, Shayo or Xiaoan, giggles away, almost messing up the last bracelet fastening because she’s laughing so hard. Bless her for finding me funny.

Then a whirlwind enters the room. It’s Dr Aubrey Bristow, my surgeon and anaesthetist for the Portocath. I ask him what the local will do in terms of delivering some pain / no pain / some feeling / no feeling and he clarified that the sedation should knock me out enough not to notice, care, or in some cases, remember what is going on. But that I will be able to feel, respond, and if necessary, express myself. The local should remove all pain, but not all feeling. Hmmm, confidence inspiring? Under such rushed conditions, no.

I then walk myself down to theatre - going in upright and vertical is a strange new experience – you get to see everything. I am in situ on a trolley bed as Dr Aubrey Bristow and his assistants fuss around me. He draws on me to mark out my bra line, making me laugh (not for real by cracking a joke, just asking me to laugh so he can see where my boobs start to wobble and draws another line to mark the boundary). Because of the time of the operation shifting at such short notice, everything is in such a rush and I'm still feeling flustered.

A ccanula is inserted. It hurts. Dr Bristow gives me stuff to make me sedated. It seems to work because next time I’m conscious of my eyes being open I realise I’m covered with some sort of green rustling waterproof fabric behind which there is a bright light. I can hear the team’s voices and they are busy doing stuff to me. Which I can feel, but not feel, if that makes any sense. I can feel the pressure of people’s hands on my skin. But no pain, no cutting, no stitching. I am vaguely aware of murmuring something but it is only when a large wave of cold liquid gets thrown over my chest and neck area that I suddenly manage to form a comprehensible sentence.

“You could have warned me that was coming!”

Suddenly the green face cover is being removed as I am being manhandled onto another trolley. I realise I am breathing through an oxygen mask. I have two new snow-white dressings on my left chest area.

They wheel me into recovery. There is a man on his trolley recovering opposite me. I am shy to do so, but feel like I want to catch his eye to acknowledge that we’ve both survived something. Although I doubt he’s suffering from the same thing I am.

I am cold and shiver. My teeth chatter. It turns out that the cold splash I felt was the iodine wash and someone was a little over enthusiastic. It has washed all around the chest area, around my neck and seeped back behind my shoulders. My hair is wet and the pillow is soaked. The Recovery Nurse gently swaps my wet pillow for a dry one and gives me another blanket. The chattering slows down and I lie in a haze.

Eventually I am being wheeled back to my room. R is there waiting. Another hospital, another day.

Only this one is only halfway done. We’ve accomplished the portocath operation, we now have the chemo left to do.

But first, lets order a sandwich and try and get some food inside me. I’m starving. I haven’t eaten since 7am and it’s now after 3pm.

Simultaneously I realise that ordering a sandwich may not be a good idea. It will give me something to throw up if the chemo makes me sick. But I cannot bear not eating anything, and I recall that throwing up on an empty stomach when all you’ve left is bile is arguably more unpleasant, so I order a smoked salmon sandwich and to hell with the consequences.

Erase and rewind

I’ve officially had breast cancer for more than a month now. Or rather, I was diagnosed with breast cancer a month ago. As my oncologist told me, now I’ve had the lump out, I am allowed to talk about it in the past tense... but it still feels so very present.

The strange and alien world of the first days after diagnosis quickly became reality and I am now into phase II – the chemo – so we’re moving through this thing rapidly enough.

But there are vivid and horrible memories that come from those first few days and they playback in my head again and again.

I have had more than enough memories for this month, these are just a few from the very first day – the day of diagnosis.

“IT FEELS GRITTY”

The Professor, having examined my breasts for the first time, still claiming it all feels benign but we should do a biopsy in case. This is all fine. It’s when he sticks the needle in and for a split second a dark shadow passes over his face. He regains his composure almost instantly and then explains himself. “The lump just felt a bit gritty when I put the needle in so I’m going to recommend you have a mammogram and an ultrasound just to check.”

Suddenly, my mantra de jour that ‘90% of these lumps are benign” feels threatened.

THE BLACK HOLE

The moment I saw the tumour on the Ultrasound screen. It appeared as a big black hole looking like some ominous planetary eclipse in the solar system of my breast. To my un-trained eye, it looked, just simply, quite, quite wrong.

Another subtle shift of tone, and the radiologist is suddenly singing the Professor’s praises in an unsolicited way that unnerves me, “You know, the Professor is one of the top breast surgeons in the country”.

I knew then it was cancer, and dialling R’s number five minutes later I found my hands shaking and my fingers so weak I could hardly grip my phone. All I wanted to do was hit last number redial and yet everything had turned to jelly.

I WANTED TO HEAR HIM SAY IT

I was in the Professor’s office again, 30 minutes after the ultrasound had taken place. During this time I had been on the phone to R, in pieces, convinced I was about to be diagnosed with cancer, terrified of the health implications, and devastated by what it would do to our plans and our lives. R was still trying to gamely persuade me that the diagnosis had not been confirmed and it might still be benign when the breast care nurse came out and asked me in for my results.

The shades were drawn and x-ray photos from the mammogram and the ultrasound scans were on the light box, casting a blue light across the room. The Professor was standing so that he could reach over and point things out. The nurse was hovering on her feet to the side of the desk. I was asked to take a seat but all I remember is standing. Somehow it made me feel more in control of the situation, putting me on the same level as the experts surrounding me with grave faces.

He started to explain what they thought they might have seen in the lymph nodes and how they would get the biopsy results back for this tomorrow. This seemed to go on an age. The scan of my right boob with the massive black blob in the middle of it hung to the right of the more innocent looking pictures of my nodes. “What about the lump? Get to the point!” I wanted to scream. What I didn’t know then was that the state of the lymph nodes was in fact crucial. It would tell them whether or not the cancer had definitely spread around my body. What they didn’t know is that my mind was desperate for confirmation of the first facts. Did I or did I not have cancer?

Finally, almost as an afterthought, he’s out with it. “And yes, the lump is, we believe, malignant. It will be confirmed by the biopsies but we think you have Stage 1 Breast Cancer.”

I finally sat down.

I spent a further ten minutes or so with the Professor talking surreally about percentage chances of me ‘surviving’ and possible treatment courses – all dependent on biopsy and surgery results.

My mind is fixating on one thing, whirring away in the background in their talk of lumpectomies, chemo, hair loss and radiotherapy. “Uganda? What about Uganda? How long does all of this take?”.

Dates for surgery were discussed. The Professory goes on holiday for a week on Sunday so would I like to be rushed into a remaining slot on Saturday or would I prefer to wait until the Tuesday after Easter.

Wait? Waiting is not something you do when you find out you have a malignant tumour in your breast. Saturday it is.



THE BRA ON THE DESK

The Professory says his goodbyes (until tomorrow when I have an appointment to see him in advance of the surgery the day after that) and I am kindly shepherded out of his office into another room by the Breast Care Nurse.

Her name is Anne. She is Scottish with a lovely lilting soft accent, and a sympathetic head angle.

She talks to me of some of the realities of the coming year. Everything has changed in an instant yet I am still muttering about Uganda. She is calmly telling me I have to put ‘me’ first now. I think to myself ‘Uganda was about putting me first too’ but I don’t think that’s what she means.

All this time, I am hearing her words float in and out, yet my eyes keep getting drawn back to the desk. On the desk is a boxed bra designed for people who have mastectomies. All I can think is, did she put that there in preparation to show me? Is that the extent of the surgery I need on Saturday? If not, will I need one like that one day, if it comes back and I need to lop the whole tit off? The stigma rises to the surface. Am I going to have to be reduced to that?

Suddenly I need to know answers. Feigning embarrassment over the vanity of such a question when this is about cancer, not how good your cleavage looks in a summer dress, I ask her. “How will my breast look? How much will he take out? Will it be mis-shapen? Will it be smaller than the other one?”

Apparently I have little to worry about. It is a small lump, and although there is a chance of a small dent in the texture of the breast, the Professor is an expert at rebuilding and reconstructing breasts from the surrounding tissue. And, as I apparently have a fair bit of surrounding tissue, I should be ok. It is harder to rebuild the breast for women with smaller cup sizes. But I should expect some shrinkage during radiotherapy, though not enough to warrant any special bras.

I am relieved, in an embarrassed way, that my breast will essentially remain the same. And my eyes are no longer drawn back repeatedly to the bra on the desk. We can now talk of fertility threats, hair loss, hormone treatments and other such niceties.

The next time I see her is with R, the following day. By then we have progressed to discussing housing prices and favourite beaches on the West Coast of Scotland. The mundaneity of which is strangely comforting.

Wednesday, May 02, 2007

This could be okay you know...

Back from the hospital a couple of hours ago and have survived Chemo I - hurrah!

No time for a long post but did some tapping in the hospital which I will try and sort out and upload tomorrow.

In the meantime, I haven't felt sick once. The portocath went in ok and seems to work. Had a reaction to one of the pre-meds which meant having the worst ants in your pants (it did manifest itself in the groin area.... most embarrassing) but nothing major and all over in 30s. The ice cap was easier to bear than expected so should be able to continue with that should my hair decide to stay in. Pee went red for a while (the epirubicin) which was a change from the last op when my pee went blue.

Oh what a world of multi coloured pee we live in.

And have been sedated up to the eyeballs on all sorts of lovely fluffy chill out drugs, but am on steroids for next four days which is sending me the other way. Intermittently wired or completely flaked out.

More tomorrow. Off to bed with my loperazam (or something like that).