New house and everything......

For the non-facebookers amongst you (everyone else can ignore this) we have moved.....  Our new address is:

15 Maidstone Road,
Singapore
139265

No landline, so carry on using Skype (youngs.in.sing) or my mobile +65 9721 4466

If you want the full, not very interesting, 5 minute look around, click here:
http://www.youtube.com/watch?v=BQxDbtu_zP4

Serene and zen-like doesn't even begin to cover it.....

Jo xx

A new hair "journey".....

This week, I have a sudden "enough" moment with my hair. Don't get me wrong - I'm loving having some hair - soooooo much better than the whole wig/scarf thing. It's just that there seems to have been a mix up at the factory, and I've got someone else's hair.

First they gave me Leo Sayers hair, circa 1979. I tried to swap it for both Marge Simpson and Grace Jones but neither was really a runner.

In the most serious mix up so far, I now seem to have ended up with Jeremy Clarkson's hair. This can't go on.





Now, I know some of you (probably the ones with straight hair) will look at the photo above and say - "but that's not so bad".  Believe me, it is - I look 10 years older than I do when my hair is wet (and therefore just curly rather than corkscrew-y) - it's frizzy and really deeply strange, as much as anything else.  So wind it in, OK.

After much research online, I decide to go and visit Cedric for a consultation. This is perhaps my most extraordinary Singapore experience so far, and leaves me reeling, laughing and in a state of some disbelief - as well as extremely hopeful that something can be done. I will, in fact, be almost indistinguishable from Elle McPherson by this time tomorrow. I am planning on writing a photo journal (not to be confused with a photo story - that's what we used to have in Jackie and Blue Jeans) so that you can share the full joy of the day.

So here we go:

09:15: Sit in Starbucks somewhere behind Plaza Singapura, waiting for it all to begin.

9:20: Have sudden panic attack that a) am going to end up looking like Snape, and b) should have dressed in trendiest clothes and put on makeup so that Cedric realizes that am actually very young and cutting edge, and doesn't give me old person hair.

9:25: Arrive at Salon. From the outside, gorgeous classic Singapore shophouse. Take deep breath and go in......





9:30: Am instantly transported to 18th century Florence, as imagined by Liberace in his Vegas years.






Yapping around my ankles are three miniature poodles in varying shades of apricot, who take one look at my hair and decide I am their mother. Resign self to spending the next 2 hours pushing them off lap to make room for Hello magazine. Cedric is wonderfully flamboyant (he should really be called Serge) and fits his environment perfectly - I am wafted into my seat. Let the games begin....


10:10: It's all go. Have now been "relaxed" although not entirely sure what this means - feel deeply unrelaxed due to limp and lifeless nature of current hair status. Still - one process down and one to do - must push on.

10:20: Hair has been blow dried ready for application of Brazilian stuff. No longer limp and lifeless but a dead ringer for a bottle brush. Oh god.

10:30: Brazilian stuff "on" and am now sitting under heater for next 30 mins. Deep breaths. Also getting quite hot with three poodles on my lap. Try to read book but am afraid to put glasses on as may cause hair dents (am not told this by Cedric so may be untrue and urban myth - but 3 months of dented hair seems a high price to pay so am not taking any risks).

11:00: Much blow drying and tonging from Cedric, along with what I believe are intended to be reassuring noises along the lines of "it'll take a week or so to settle down". As cannot see a mirror at this stage, am not in the slightest bit reassured by said noises. In fact quite the reverse.

11:30: Allowed to look in mirror. Oh god. Am wearing a black Andy Warhol wig.



12:00: Eject poodles from lap (not as easy as it sounds - they cling surprisingly strongly).  Mortgage house to pay for treatment and leave, clutching bottles of special shampoo and conditioner and instructions to not wash hair for 24 hours (noooooooo) and to not go in either chlorine or seawater.  EVER.

12:05: Go in search of paper bag for head.

12:10:  Have a coffee and assess the situation:

• GOOD:  no longer have Jeremy Clarkson, Billy Joel or Grace Jones hair
• BAD:  have Andy Warhol hair which may potentially frighten both children and horses
• GOOD:  can now use hair accessories again
• BAD:   have always been really rubbish at using hair accessories.  Also will NEED to use major hair accessories unless life returns to hair
• GOOD:  hair seems to be a rather nice colour when curls removed.  Also shiny and glossy and healthy looking
• BAD:  hair appears to be dead and clinging to scalp in a most unattractive way.

12:30:  Arrive home to mocking children.  Edar says "but it was much prettier curly".  Sack Edar.  Hide in room and start counting the 24 hours until can wash hair.

THE END RESULT:

 

I am thrilled.  I look normal.  It's not exciting, interesting, sexy or anything.  I have boring, short brown hair.  And do you know what - that is absolutely bloody wonderful!  I feel as if it's the last stage back to normality - I look like myself again.  Hurrah!

Zen-like and serene,

J xx

All clear.....

Just a quick and self-indulgent post to let you know that I had a clear PET scan, mammogram and ultrasound this week.......

:-D

Life is good.

My hair is not. Imagine a sheep's arse, crossed with Leo Sayer c 1979, via pubes and a small poodle....... I'm not complaining, I'm really not, at least it looks like a hairdo someone might chose. Just not me. And that does give rise to some concerns regarding what people might attribute to a serious error of judgement.......

However, remaining totally zen-like and serene,

Jo xx

Technology fail....

For those who didn't get clip on my last post, here's a link:

or as a last resort, copy this into your browser:

http://youtu.be/wuuHEAgj_g4

As serene and zen-like as ever, Jo xx

Christmas is coming....

....and I realise that I have promised to post a photo update.  So here goes:

So excited about our trip.  Not in the least serene OR zen-like.  Loads of love, Jo xx

The first check-up

Hours to go until first check-up - 24
Level of nervousness - High to Very High
Kilos still to lose - 3
Hair status - Very Short to Short

Today I stepped back into the Smurfs opium den to have my blood taken for the routine checkup tests.  Looking round at all the people looking so ill having their chemo, I felt almost embarrassingly loud and healthy.  I know I am quite often embarrassingly loud (according to my daughter) - but the feeling of robust good health seemed very out of place, and made me realize that perhaps I had been quite sick, after all, in those last few months and just didn't realize it.  Good to only know that after the event.

The concept of the tests is a scary one - I feel (as I think I mentioned....) really great.  I assume on a daily basis that I am cured - so much so that days go by when I don't actually think about The Thing at all - which I couldn't have believed was possible a few months ago.  So the idea of willingly going in to "check" and potentially be told that all is not well in the rose garden is an odd one - but must be done.

There is also the very real possibility of a sound telling off from Papa Smurf, since I still need to lose 3kg and have singularly failed to stick to the one-unit-a-week alcohol "suggestion".  I suspect the two might be linked.  I also think it was a silly suggestion.

The Operation Elfin exercise programme isn't going so well either.....




Follicle News

I have had many requests for a hair update.  Well, much movement on that front:

- eyebrows and eyelashes are back - hurray!
- body hair is back - booooooo!

My head hair got really quite long in its little old man, wispy and totally see-through incarnation - not a good look - I moved from Dobby (through Winky - as a result of all the Butterbeer) to Kreacher.  It got longer and longer, but no thicker and less see-through - and was all a bit sad, really.  Then lo!  Suddenly a new layer of proper hair arrived underneath.......

So I dug out the Epilady again - and shaved off all the Kreacher hair - and have started again with the proper hair, which is now growing at the rate of knots.  It is currently the color and texture of a brillo pad (without the pink powder, obviously, although that is an idea)  and I would say 1cm long.  Growth rate approx 0.5cm a week.

Later......

Hours since first check-up - 24

Level of nervousness - None

Kilos still to lose - 4 (how did THAT happen)

Hair status - Very Short to Short

All good news.

As serene and zen-like as ever

Jo xxx

What do you think?

Tons as always, J xx

The end of the chapter.....

Treatment is over - and I feel as though I should be jumping from the rooftops and screaming with wild excitement - but I'm not, and that's a bit weird. Of course, it feels absolutely bloody brilliant to know that there are no more visits to the Smurfs - and this Thursday felt enormously and fantastically free - but frankly, apart from that, the whole thing feels like a bit of an anti-climax.

I guess because you don't get the reassurance of a "Off you go, you're cured" type conversation, which would be really really nice. Instead, as Lisa Lynch puts it in the C Word - the end of treatment isn't really a lovely solid full stop, its more of an indecisive semi-colon or a dot, dot, dot......

But enough of that - I am determined not to linger on it as it's simply too emotionally exhausting, and boring for everyone else. In the meantime, Operation Elfin needs to start. I have decided that to carry off a short cropped hairdo (which, for the avoidance of doubt, I do not have yet) you have to be thin and toned. I am very decidedly neither at the moment.

Also, Papa Smurf says I have to do 5 hours exercise a week to minimize the chance of recurrence - along with the low cholesterol, low sugar, low booze diet. I say she's a bully and, to be honest, rather dull.

It will all have to wait until we come back from holiday! That, I am excited about and jumping from the rooftops - it feels an age since we last really had lovely family time - I simply can't wait. Hurray!

Follicle news

I've also been told that eyebrows and eyelashes can take even longer than hair to grow back - I was assuming that my caterpillars would re-emerge swiftly, given how often I had to pluck the buggers - but it seems not, which is a shame. A face without eyebrows is like Take That without Robbie (contentious), or Queen without Freddie (less so) - nice enough but just not complete somehow....... no matter how cleverly you draw them on.

Hair (fuzz) growing fast but still totally see through. A few weeks should see normal hair starting to appear - in a fetching shade of mouse (sorry Paddy, EAGLE, I know....). By Xmas I should have an Emma Watson style crop - hence the need for elfin-ness.

Not sure what I am going to do with this blog. Perhaps one last posting before we come home at Xmas, with a photo, so that you all recognise me and don't think Hermione has come to stay.......

Happy days.

As zen-like and serene as ever, J xx

The difference a week makes....

Just re-read that last post and can't believe how totally different I feel this week; this rollercoaster ride that we are on is quite extreme. So, sorry to have subjected you all to that one, but I did promise to be honest.....

For a start, this week, I don't need the dreaded WBC booster injection - and as a result, have virtually no side effects. OK, I've got a spot on my tongue, but my mother would say that's from telling lies, and who am I to disagree? I wish I knew what I'd been lying about though.......

Papa Smurf also decides I only need one of the drugs from now on, because I've had enough of the other one (had enough of as in "don't need any more of", rather than as in "stuff that" - although that too). This also hugely reduces the crap factor of each week, so the final two weeks is looking very promising.

The final two weeks! I can't tell you how amazing that sounds. In ten days time, I will have had my last treatment and life can return to normal - starting with our trip to Bali at the end of September.

Actually, I suspect that this is when the scary part (rather than the horrid part) starts; learning not to live in dread that it's going to come back, dealing with the scans and waiting for results, being rational about not thinking that every headache is a brain tumour etc etc. We are both reasonably good at putting all of that into a little box marked "Do Not Open" but it does tend to seep out a bit in the middle of the night if you don't pay attention.

I have decided that so much has been done to my body which I have not chosen, that I want to do something to it myself. Perhaps a way of taking control back, but I want to get a tattoo done - perhaps more of a talisman, who knows. I know I could do this by getting super-toned or something, but let's face it, a tattoo would be so much less effort. And all those silly arguments like "what will it look like when you are older" seem rather moot - let's face it, no-one's bodies look fab when they are old and mine certainly won't........

So - something Asian, I think, and something to symbolise fight and hope and strength......... Thoughts on a postcard, please. Location also tbd.

I am also focussing very hard on growing hair now. Still not altogether successfully - the bread is now really really mouldy but still no real covering ability. But I plan to have hair for Xmas ("All I want for Xmas is NOT me two front teeth.......") so watch this space.

As zen-like and serene as ever, J xx

Victor Meldrew has nothing on me.....

Bored, bored, bored.

Fed up. Cross and irritable. Finding it hard to be funny about The Thing right now.......

I know the chequered flag is in sight - only 4 more weeks to go - but it feels like (I have to imagine this, obviously, having never run more than a mile at one go in my life) the last few miles of a marathon; I just want it to be over and every step feels like a mile, because of everything that we have already done. Wanting to sprint and get it finished but can't - instead knowing there is still a long slow painful slog to get to the end.

OK - enough of the sporting analogies....

It doesn't help that the last cycle is utterly grim - Papa Smurf announces that my White Blood Cell count (the ones that fight infection) is low, so I am given two injections to take over the week to boost them back up. We have long suspected that it is these injections that actually give me the majority of my side effects - the one week I didn't have to have the jab I had no symptoms at all - but boy is this confirmed.

After the first injection, I get the normal bleugh hangover feeling - nothing new. The day after the second injection, I wake up feeling as if my whole body is made from mercury, sloshing around inside my skin and skull - and if I move anything or use my brain at all, I feel sick. I throw up when moving to go to the loo, when trying to entertain myself by looking at a book and when calling J at work to ask him to come home. It is a deeply deeply unpleasant experience - I feel trapped in my body with no way of occupying my mind - can't talk, read, watch tv, eat, sleep, listen to music - and just have to lie in bed feeling sick and sorry for myself. I have so much more sympathy for those little old ladies who can't see or hear (and are impossible to buy Xmas presents for) - it is enough to send you completely out of your mind.

I finally remember reading - those online forums again - about Clarityn helping reactions to this shot, and decide that it can't hurt (given that we have some in the medicine cupboard). I take one and manage to keep it down, followed by a painkiller which also stays down. Amazingly, after an hour, I start to feel human again - and by the next morning I am totally back to myself. Today in the Den I'll discuss this with Papa Smurf and we can decide what to do this week; I do NOT want to go through that again.

But so you don't all think I am about to string myself up - I'm really not. It is the strangest thing that the symptoms seem to have an on/off switch. Either I feel crap, or I feel absolutely fine - there is no halfway. So yesterday, lovely lunch out with girlfriends (actually High Tea starting at 11:30 with lots of puddings - heaven); today, well, back to the Den, but then there will only be 3 more to go........

Hair news - less peach fuzz now, and more mouldy bread (according to my beloved). I think that's a step forward, but hard to be sure. Annoyingly, it is almost completely see through, so not doing a great job yet of covering my baldness - if it was darker, it would be a reasonable covering by now! Its also sticking out completely straight at right angles to my head - in the manner of a cartoon character who has put their finger in a socket. I still love it (athough Papa Smurf rained on my parade last week by telling me it would all fall out - I am choosing not to believe her) and have become a habitual head stroker - its just sooo soft, like having a hamster on my head.

Am trying to measure the length - it's tricky - but I'd say more than half a centimetre and definitely growing and thickening.

Body hair also returning straight and blonde. Maybe ALL my new hair is going to be straight and blonde? What a fab bonus that would be........

As zen-like and serene as ever, J xx

Hair again....

I have hair! I am sadly over-excited by my 3mm of peach fuzz, although it is almost totally white, it is so soft, like a kind of dandelion clock all round my head. AND it is actually growing (but sooooooooo slowly - and believe me, I check progress daily) and not falling out.

Both kids tell me today that my hair is getting really long. Bless them - they are big on encouragement - and don't see the irony in calling 3mm "long". I really hope it doesn't stay perfectly white - but all hair is good hair, and that's what dye is for...... I even shave my legs this week, and get excited by that too. I will try never to moan about hair removal ever again.

I am so carried away by my new fuzz that I totally forget to wear any hair when we go down for dinner at Riders Lodge in Malaysia - I suddenly remember as we turn to head to the dinning room and have to leg it, giggling hysterically, back to our room, followed by the kids and J - we all weep til our sides hurt and then return to dinner. I don't think anyone notices - they are all too polite and kind to mention it if they do.

This week I have number 7 of 12 treatments - only 5 more to go.

Papa Smurf tells me that when it's all over, she wants me to keep the port in for another two years if possible, in case I need it again. A rather stark reminder (which I don't need) that there is a possibility of The Thing - part 2.

I know she is just being practical, and we would feel silly having to go through another operation on top of everything else if the worst should happen, but still....... This is the thing with The Thing - you can spend weeks assuming you've beaten the bugger, and then one comment like that, or one discussion about "improving your chances of survival", and you are firmly put back in your place and reminded that this is something to live with forever - it's never "over". And that's crap.

This comment, along with "chemo brain" and chemically induced menopause, club together this week to create the perfect storm (at 3am, of course) when I lose it totally and J spends 3 hours in the middle of the night talking me back down. I sob and rant, and he listens and holds, and we get through it. I think perhaps I have been holding it all in a tiny bit (repressed? me?) but believe me, it's all out now and I feel so much better for it.

Chemo brain is a well documented side effect - and means I struggle to remember names of things, and also lack the mental agility I normally have, to solve problems, fix things etc. It's all totally chemical, and is immediately reversed once the drugs are stopped, but I hate it. I have to learn to let go - and ask J to do things I can't (and accept that, for a bit, there ARE things I can't do) - not really my style, so could be an interesting learning experience..........

And Singapore is NO place to be having a hot flush. Also possibly/probably (40/60) reversible - we have to wait and see.

Onwards and upwards...

As zen-like and serene as ever, J xx

On "Being a hypochondriac" and other stories.....

After two weeks of Bears Bile and Milk Thistle, my liver has regenerated itself enough to be allowed to go back to the full dose of chemo drugs this week, hurrah!  I love that word "regenerated" - it makes me imagine a little mini Dr Who inside me doing his thing (the David Tennant version, obviously, I wouldn't be allowed any other type...oh come on, he does look like him a bit.....). Dr Who does need to pull his finger out a little, as there is still some work for him to be getting on with, but he has made excellent progress.

And I did check, the Bears Bile is thankfully synthetic, so we don't need to worry about the dear little bears in China, or wherever, with taps in them. Phew.

I was ruminating the other day - one of the really shitty things about The Thing is that it turns you (well, it has turned me) into a complete hypochondriac. You have these meetings each week with Doctors, who tell you to report any new symptoms (and often they helpfully tell you what to look out for). After a few weeks of having nothing much to report, you start to feel like someone who's not really playing the game - and start thinking about trying to do your homework. This is disastrous.

This week, I managed to convince myself that I am starting to have Congestive Heart Failure - a one in a zillion side effect of the previous lot of drugs. My reasoning - I felt a bit breathless after 20 mins on the treadmill, and after walking up a steep hill while chatting at the same time. So I dutifully report this to Papa Smurf who (kindly) tells me not to be a prat. 1 in 100 people on chemo would even THINK about going on a treadmill and fewer than that can actually manage to do it.  I am just less fit than I used to be - get over it!  But being Singapore, she does offer me repeat echo tests etc, which I decline.  I am just being a prat.

But it's not just that though - you start to question and analyse every bruise, spot, ache and pain; Is this something I am expecting, Should I be taking any of my meds for this? Does it mean anything? I absolutely hate this - gone are the happy days of UDIs - it's SO BORING both for me and for poor J who has to listen.  Perhaps I should just disable Google on my laptop.

I suspect it may all just be a side effect of not being able to drink a drop - I now know that I am a very very very bad teetotaller.  I guess that comes as no surprise to anyone!  I now dream about that lovely first gulp of a cold beer on a hot evening (ooh with the condensation on the outside) - surely one of the most blissful things in the world, along with kicking off your shoes in the taxi and taking off your Bridget Jones pants (not in the taxi, obviously).  Diet Coke or Ginger Ale does NOT cut the mustard.

Still - only 7 more weeks to go and it will all be over.  And that IS something to be excited about.

As zen-like and serene as ever, J xx

About those 4kg....

It seems that putting on 4kg in 4 days is not merely a question of eating all the pies. I did think it was a pretty good effort, even with all the free Margaritas and endless croissants - but it turns out to be a first hint that all is not entirely well with my liver.

When I go in for my pre-chemo blood tests this week, the results confirm that my liver is being affected slightly by the chemo - and that more tests are needed to rule out liver damage, tumours, hepatitis and auto-immune diseases before I can go ahead with the next cycle.

I take this badly. The idea that another, previously healthy, part of me is potentially now damaged is horrible, as well as the delay to the chemo (I just want it all to be over). And of course the underlying terror that they will find tumours in the liver, which would be very bad news indeed. So I am perfectly foul to J who is doing his best to be both cheerful and rational while we wait for more blood tests and an ultrasound to be done.

They also decide that I need to have my womb, ovaries etc scanned at the same time. Papa Smurf asks me when I last saw a gynae and her horrified reaction to my response of "I never have......" says it all. It's hard to explain that, in the UK, that question is a bit like asking when you last saw a brain surgeon - if you've never had a problem, you never see a specialist.......

So I have the scan (involving probes you don't want to know about) and at the end the scanner lady leaves me on the table, still covered in jelly, for 15 mins - to "go and talk to the Doctor"...... This is where I hate the Singaporean way - there is no allowance for the fact that you might draw some conclusion from the fact that your scanner lady has suddenly rushed out unexpectedly, there is no effort to explain what is happening, you are just left wondering. When she comes back I pounce on her - well not literally, as I am still covered in jelly and that would be messy - and make her tell me if there is anything in the scan that she's seen. Her response of "Nothing so special" is only marginally reassuring, but even I can tell it's the most I'm going to get out of her.

We are then told to go home and wait for the results, which will come in a few days. Of course, being me, this is the cue for much Internet searching - and for once the information is reassuring - mild liver damage is a very common side effect of chemo, and fixes itself once chemo ends.

Thankfully, the results come back quickly as being all clear on all counts - so I will be allowed to continue with chemo, under close supervision by a Hepatologist (Liver Man).

The next day, we meet with the liver man who gives me some pills made out of bear bile (yes, you read that right - although I'm hoping this is now synthetically produced) and milk thistle. He also gives me the worst news yet - not a drop of alcohol during treatment from now on. This is bad news indeed.

Then off to the Den for this weeks cocktail - a reduced mixture this time as Papa Smurf wants to minimise the chemicals until the liver issues are stabilised. She is hoping that this will have happened by next week and we will be able to go back to the full whammy then.

Nothing is straightforward, it seems.

As zen-like and serene as ever, J xx

Onto the next stage......

The final countdown has started - I've now finished two of the last 12 chemo cycles - only 10 more to go........ It does finally feel as though the end is in sight.......

Whilst I would definitely argue with the "walk-in-the-park" promises given by Papa Smurf - this lot is considerably easier than the last lot. Imagine a 2 day hangover of the middling variety (too much white wine, say, rather than too much whisky or, heaven forbid, too much tequila....). Not go-back-to-bed grimness; not even must-lie-on-the-sofa grimness; more a general feeling of headache and vague malade/lack of energy.

The shitty thing about this lot is that it is every week.

This means pretty much a whole day in the den (Tuesday) or waiting to go in. Then a day of feeling absolutely fine (Weds) followed two days of feeling hung over (Thurs/Fri) And then only 3 days of feeling normal before starting all over again.

I can tell already that this will feel very relentless - having treatments once a fortnight meant that I didn't have to think about The Thing at all for a whole week, which was great for morale. To be honest, I feel pretty fed up with it all at the moment (not depressed or miserable, just fed up and bored) - hence the lack of blogging; there's just not really anything interesting to report.

In the meantime I also have to try to lose the 4 kg (yes, 4kg) that I put on during our lovely 5 days in Bintan. I was roundly told off by Papa Smurf for eating all the pies, and was made to promise to do better before next week - oh the pressure........

An image to leave you with, J and I side by side having a facial and massage in Bintan. J has a fetching pink facepack on - I am next to him (obviously) bald, with a blue facepack on..... Think less "Avatar", more "Blue Man Group"...... and we are both wearing nothing but black paper pants and a skimpy towel. Enjoy.

As zen-like and serene as ever, J xx

Decisions, decisions

The most exciting thing that happened this week is the arrival of Agnetha, the blonde "bob on a string". She is wonderful and I love her more than my own hair - always straight, always glossy, always there for me.


Without a hat or headscarf on top, she does look rather strange as she is, in fact, a wig version of a monks tonsure (imagine the scientist in Back to the Future, on a good hair day.....). This makes her wonderfully cool and airy to wear, but it's not a look for public viewing.

J and I decide to go on a road trip to Malaysia to check out the building site that is Marlborough College Malaysia - and I wear Agnetha and a baseball cap, to look supercool for the visit. Approaching the border police, I have a sudden panic about the wig protocol - are they going to make me take my hat off? If so, do I leave the half-wig on (really not a great look) or do I whip the whole lot off and frighten everyone? I am still deciding what to do, when, rather disappointingly, they just wave us through. Definitely something to consider for my next overseas trip. J's mantra is to remember that you will never be the worst thing they've seen, but in this case, I think the shock of seeing Agnetha suddenly turning into George Dawes might be right up there...

The rest of this week is made up of boring Dr appointments.

The first visit is to Lovely Prof T for the 3 month checkup (Yes, it really has been only 3 months since my first surgery). J and I spend the evening beforehand doing a full and frank appraisal of my new left boob and come to the conclusion that whilst in a bra it looks as though it is a complete match (overall volume is the same, then), when roaming freely:

1) it's a lot perkier and higher than the old one
2) it's smaller and flatter than the old one

We go into Prof Ts surgery and feel like old hands - Efficient Nurse recognizes us (even wearing Agnetha) and we know the drill. Sitting in the waiting room, I busily people watch (as I have forgotten my book and J is on his blackberry) and notice a totally shell-shocked looking couple who are holding hands and not speaking much. My heart goes out to them, they are clearly in that post diagnosis, pre-treatment trauma phase - and nothing anyone can say or do will make anything better for a while. It does bring home to me how much we have moved on from then - and how much I never want to have to go there again.

Lovely Prof T says that, indeed, the new boob is higher than the old one, and sentences me to wearing The Strap for a further 3 months, which will apparently squash it down to match it's slightly saggier sister - and will reshape it so that they match again.

This is horrible news (and over a coffee I take it out on J, as I can see he doesn't understand how horrible it is). The Strap is a thick strip of white elastic with Velcro at either end, which has to be fitted tightly across my chest at armpit level and worn for 24 hours a day. It is unbelievably unpleasant and vice-like; it rubs my armpits, it makes me feel breathless, it's hot and sweaty, and it smells after about a microsecond.

It seems odd, considering all the other things that we are going through, but I weep copiously as I go through this with J - I just can't seem to be brave about it. Going backwards feels awful (I have been free of The Strap for 2 months now) and it is an omnipresent reminder that we are living with The Thing and all it has done to my body. It also looks terrible and means I can't wear most of my clothes.

Happily they don't have one in stock so I get a reprieve for a week while they order one - just in time for our beach holiday. Great.

********************************

The next big deal is a phone call from Papa Smurf. She has just been to a conference where they discussed cases like mine. (As an aside, it seems that Triple Negative Breast Cancer is the Big Thing at the moment as it is the one which doesn't have any new 4th generation drugs to treat it, it attacks younger women and is very aggressive - so they all want a piece of the action).

Anyway, studies have shown that adding more and more drugs to the chemo cocktail has no effect on outcome UNLESS the original tumour was over a certain threshold of aggressiveness (chemo works by killing anything which is dividing quickly, hence more aggressive tumors are more susceptible to chemo). So she wants to do more tests on the original lump and find out how aggressive it really was.

We then have to decide whether this is information we really want to know.

I go straight to the Internet and discover that the more aggressive the lump, the more likely the chance of it recurring, even after treatment - with really, really aggressive ones having a really, really high chance of recurring. And with The Thing, once it has recurred, there is no cure. Yes, you can manage it for years and years, and yes, you can continue to have a long and fulfilled life, but it WILL get you in the end.

So do we want to know?

Both of us have elected for the same coping mechanism throughout all this crap - which is to assume I will be fine after all the treatment. There are lots of things which support this - the lump was small, they cut it all out, it was only microscopically in one lymph node, they are giving me lots of chemo. However, there is a "small but not insignificant" possibility, which we have chosen not to consider AT ALL, of it coming back for good.

We are now forced to think about this possibility - and how we might change our lives if we knew more about it. This is extraordinarily surreal - and it feels as though we are talking about another family, and the decisions they might have to make. It leaves both of us rather shaken and less gung ho about the whole thing - but we come to conclusion that we don't want to know more than we really need to.

So we tell Papa Smurf to go ahead with the tests, but that we only want to know if the tumour met the criteria for more drugs in the next stage. We don't want to know any more detail than that - as knowing it was super-aggressive won't help either of us in any way. She agrees, and reassures us that the threshold that she will be telling us about is still a low level of aggressiveness, and nothing to be concerned about.

Our assumption is that my lump WILL have been the more aggressive type - there are things to support this too (it grew quickly, it was grade 3, it is Triple Negative). So we might as well zap it with everything in the armoury and chose to take comfort from the fact that the more aggressive The Thing is, the better the chemo works.

Later in the week, we find out that our assumption is right; so more drugs in the cocktail for me for the next round of treatments - it moves from a simple Dry Martini to something with fruit and an umbrella - a Cosmo perhaps? Or a Long Island Iced Tea?

As zen-like and serene as ever, J xx

Goodbye and good riddance........

So a whole fortnight with no blogging - a sign of no Thing news/Thing events of interest; the next cycle comes and goes much like the others.......

During my good week, I decide to check up on some of the drugs I have been given (what DID people do before the internet?). Most seem fine - but the sleeping pills raise a whole load of alarms ("Lorazepam ruined my life", "Advil addiction led directly to heroin overdose", "Sleeping pills to blame for mass murder", "Aliens abducted me to get my Advil" etc) so I investigate further - its always so important to believe everything you read....

Reading through the drug information, I immediately I know I have every side effect available (hypochondriac, me?) and I also develop a very real concern that a) they are clearly addictive narcotics and b) I am experiencing some withdrawal effects each day (nausea, headaches) that I had put down to lingering chemo effects.

So I decide to go cold turkey and stop taking them. Three days of genuine withdrawal later (headaches, nightmares, dizziness, nausea) the side effects go away and I throw the rest of the pills down the sink.

This dramatic gesture means I don't have them available during the chemo week - although Papa Smurf says I can use Nytol instead if I like, so I do, and it works fine. What is amazing and brilliant is that I stop feeling sick and headachy a whole 2 days earlier than in the last 3 cycles. Which means I don't have to take the chemo anti-vom pills that make me go to sleep for the whole day.

This means I have the whole weekend as a nearly normal person - 2 days clawed back from The Thing - hurrah! Who knows if this is to do with my body adjusting, or no narcotics - but I know what I think.........

The whole snowballing drug thing is scary, and I feel as though I have learned a good lesson about the whole Singaporean "over-prescribe"/"feel no pain"/"take a pill" culture.


Monday 13th

The last AC (aka The Red Devil) nasty chemo cycle is done and dusted - I am back to normal and it feels great to look back at another stage of all this which is now OVER. It does feel as though we are moving through the treatment now and that hopefully the worst really is behind us.

Whilst not anyones idea of a good time, the reality of this stage of chemo has, for me, been much less grim than the idea of it. I was expecting Mr Creosote "only wafer thin" style vomiting, days of looking wan in bed, and probably an oxygen canister involvement at some stage. Looking back at Dr Crippen's list of probable side effects, I know I have got away very lightly with 3-5 grotty days each cycle.

The fact I'm so well must be largely due to the fact that I don't have to raise a finger when I am feeling lousy (lovely lovely Edar) - and frankly, not often when I am feeling well - meaning I can lie around and recover for as long as I want to each time. I read stories of people with tiny children, living on their own and I simply can't imagine how grim that would be. And apart from J who is a continuous, amazing source of strength, the other large factor is the constant stream of cheerfulness and drivel that comes from both the UK and Singapore - it makes a huge difference to feel and be normal whenever possible.

We've now got a full two weeks before I have to venture back to the land of the blue people - two whole weeks of normal - hurrah! The kids are about to break up and we can spend time enjoying being here........


The Next Stage

The next stage will be 12 weekly doses of a much less toxic drug.

Of course, nothing is simple, and there are still unknowns - Papa Smurf wants to give me a mixture of drugs - the "normal" drug given at this point, PLUS an additional one which is normally for people with stages 3 and 4 of The Thing. I am only stage 1-2 borderline, but because it is an aggressive version, she doesn't want to take any chances, and she also believes that in a few years time, this will be the gold standard of care for people like me, and doesn't want me to miss out. However, opinion is divided, with some people thinking it is an unnecessary treatment, overkill and ultimately an unhelpful additional stress on the body at a time when it doesn't need that.....

I am also skeptical that it may be Singaporean over treatment - we have gone a long way further already, I suspect, than they would have done in the UK...... Are we using a hammer to crack a nut..... But then will I regret not going with it if The Thing comes back........ As always - just loving the uncertainty.

So another meeting planned in the Den to discuss it all - side effects, percentages (we love those, remember), etc etc

One day at a time.

As zen-like and serene as ever, J xx

Three down, one to go

AC chemo 3 is officially over. The "ill" time is two days shorter this cycle, which leads me to believe that I had flu (brought home from work/school by both Napoleon and J during the week) last time. That would explain why I felt so flu-like, then.

Anyway, for whatever reason, it is a huge morale boost to have an unexpected two days of feeling good. And another huge morale boost to know that there is only one more of these horrible cycles before I move onto the easier weekly ones - although the idea of going to the Opium Den every week for 12 weeks fills me with absolute horror. I'm not thinking about the realities of that too much at the moment - it's easier to cope with one thing at a time and that is definitely tomorrow's worry.

Instead, I spend some time during the grotty days revising for my Singaporean driving license - reading the rules of the road and taking the practice tests - which suddenly explains a whole load about Singaporean driving standards. Two questions that spring to mind are:

"When should you use the middle lane of a 3-lane carriageway?"

A) when you are overtaking slow moving traffic in the left lane
B) when you don't know whether to turn left or right
C) when you are overtaking slow moving traffic in the right lane

The correct answer, somewhat surprisingly, is B. What's worrying is that both A and C have equal status.......

And another totally genuine question - had me stumped - "When waiting at a traffic signal, you should:..."

A) be alert for other road users
B) rev your engine to prepare for the green light
C) take the opportunity to sip your coffee

Luckily I have until July to master this.

This week I finally get over the whole hair thing - having definitely been in denial and then grieving, I reach acceptance. Well, I reach OK with it, and that's good enough for the moment. It helps that the kids are now relaxed enough about it to take the piss (they have started to call me Dobby, which I feel is unkind) - as always, laughing takes the sting away.

Unexpectedly, though, I have stubble on my head - it feels rather nice, like moleskin. I expect it will all fall out again in a few days time, but it's good to know it WILL come back.....

As zen-like and serene as ever, J xx

Another week goes by

We have a lovely week, from Weds onwards everything is totally back to pre The Thing levels. I rush around fitting two weeks worth of domestic trivia (bills, dry goods shopping, emergency supplies for the kids etc) into 3 days and feel like a normal person.


Anthea and I have our first outing - to great plaudits. Whilst she will never look like my hair - the general consensus is that after a few minutes of thinking "that's a wig" people forget about it completely. For those that haven't seen - here is a photo.

So we go out to a dinner party, I go to book club, we spend Sat night in the highest Alfresco cocktail bar in the world (1-Altitude) followed by a trip to an amazing pudding bar afterwards, which is a very cool evening out. Then another lovely family BBQ lunch on Sunday. Life is good.



We also have a new addition to the hat/hair family - here is a picture of it - I call it Soccer Mom, but the kids have christened it Jason, after their diving instructor.

I also lose my nose hair this week. You wouldn't think you'd notice, but it gets suprising after a hot curry, soup or eyedrops.

Then on Monday night is a dreadful back-to-school/Sunday night feeling - back to the Den on Tuesday.

All the Smurfs are as cheerful as ever, but is a dull, dull process - not helped by the fact that I have to have a blood test before - then hang around for 1.5 hours before I can see Papa Smurf to get the go ahead for the infusions. All blood things are at good levels, so we go ahead for AC Chemo Round 3.

The tedium is not helped by the arrival of a "new girl" who sits next to me and advises me (endlessly) to invite Jesus into my life. And then gives me healing recipes involving unmentionable Chinese ingredients. No thanks, I am happy with my fruit juices - I'll give the dried silverfish a miss, if it's all the same to you. I feign sleep (easy to do when you've got no hair and a drip in your arm) and she moves on to J, but not before using nearly all the forbidden Journey, Stay Strong, Keep Positive words. I hiss gently.

I watch nervously from beneath my eyelids and happily he manages to avoid mentioning that he thinks Jesus and God are being pretty shitty to us right now - he is smiling and pretending to write down recipes. And then they go away.

So back onto the roller coaster for the next week - I feel great so far and decide to make the most of it - and am planning on going to an Art show tonight put on by two mates who I will call Georgia (O'Keefe) and Annie (Leibovitz). Very very bizarrely - Georgia did all the cartoons at Justin's stag party so some of you may remember her (relax, she remembers nothing....)!

Tiny Tim is now on one crutch only - and expected to be off that within a week. Napoleon is still in a sling for 2 more weeks and off rugby/contact sports for 6 more - guttingly both kids have been told that they can't complete their PADI courses until next term as they aren't fit enough to do the sea dives. So we decide to book a holiday instead.......

J is pretty much mended.

As zen-like and serene as ever, J xx

Half way through AC

Chemo cycle 2 is officially over - and is both longer and less unpleasant than the first cycle.

The first three days are almost completely side-effect free (apart from the whole hair thing, which I have droned on about enough) which is fantastic. Of course I don't appreciate it, because I am too busy getting used to being bald, but I feel normal and at any stage during this first week, normal is A Very Good Thing. So much of my hair has come out by this stage - in massive chunks - that I decide that the time has come to do a Britney and shave it off.

The only weapon I have at my disposal is my Epilady with shaving attachment, so I hand it over to the kids and ask them to do their worst. J jr can't bring himself to be involved and goes to kill people on COD instead, while Tiny Tim puts unmentionable rapper style zig-zags across my head. Thankfully she can't manage a Nike tick. Then J finishes off and I look like GI Jane without the muscles - but I am pleased to see that I do have rather an elegant head shape and long neck.........

The next two days are, frankly, grim. I have two states of play, "grotty" (sick, headache, tired, grumpy) and "asleep" which I can chose between - the pills switch me immediately from "grotty" to "asleep" for 3 hours, but I can only take them 3 times a day. I take a different set of pills to knock myself out at night too, and so the two days goes by. I suspect I'm not much fun during this time, but happily I use it to avoid having to see the cinema magic which is "Thor" - J takes the children on his own. I am planning on missing "Pirates of the Caribbean 25" in the same way next cycle.

The final two days are like being post-flu - I feel like I am walking through treacle - but there is no headache and no sickness, and each hour I feel a little bit better. I watch Tenko, Grays Anatomy and Heroes and love it all - a sure sign that my brain has, in fact, turned to mush..........

During this stage, I also develop The Hunger. I know I often surprise people with the amount I can put away at a normal meal time, but this is something else - in these two days, I just can't seem to get enough to eat. I am permanently with my head in the fridge, or making a marmite sandwich (lovely, lovely marmite), or fighting for scraps from the children's plates. We go out for a delicious family lunch and I eat everyones leftovers - normally J's job, but he doesn't get a look in. We go to the Polo club with the Gareth Edwards's for drinks and snacks, and I gobble everything in sight - huge shared plates of Satay GONE! Bruschettas GONE! Calamari NOT A HOPE!

And then suddenly - eight days after it started, I am completely back to normal again.

The fantastic thing is that I am now halfway through the AC cycles - these are the horrible ones - only two more to go. Then it's onto the weekly ones for 12 weeks, but the Smurfs promise that they will be a walk in the park, comparatively. They are known liars though, so we'll see........

As zen-like and serene as ever, J xx

....gone tomorrow

So now we all know that your hair doesn't magically explode during the first session of chemo, how does it happen?

Well, I find out pretty fast, faster than I was hoping to.

I wash my hair on Sunday and notice that there is rather more clogging up the shower than normal. Nothing really unusual in that - J can never believe the amount of hair I can manage to lose during a normal hair wash - but somehow I know this isn't right. So I carry on combing with my fingers, and more and more comes out. Oh God - this is it. I am not one of the 1%. My inner self was right all along.

I decide to stop pulling it out and go for a blow dry instead. I realize this seems counter-intuitive - I mean do I want it to stay in or not - but I would rather be bald than Michael Keaton, which is what happens without the help of a hair dryer. Blow drying does make things look normal - and actually not too much comes out, so I relax a little.

My pubes start coming out too. Not entirely unwelcome. But a little odd. Eyebrows and eyelashes hanging in there - please please may they stay......

Later that evening I pull out an entire curl from the back of my head. It's quite a trick so I do it again to show J. He looks appalled and I decide not to repeat in front of the children.

Curiously I am not particularly unhappy - more resigned than upset.

The next day, I start to moult like an old Labrador. You just have to touch my head and it goes up in a puff of hair. Everywhere I go, I leave a little trail of hair - it's gross and it's starting to freak me out. Then I look in a mirror and Bill Bailey looks out at me - I have developed the widest parting ever aaaaarrrrrghhh. I panic and scrape what's left into a ponytail (mistake, as a whole load more falls out) but the parting is covered and I rush off to the shops for emergency wide headband buying.

The wide headband seems to do the trick - hopefully this look will last a few more days as it makes it clear I do still have some hair. Then we will have to move onto Anthea and my other new purchase - ponytail hat. Ponytail hat is a baseball hat with a ponytail and "bangs" which I have ordered. I think it may be answer for casual wear - but I have become a wig junkie - S-I-L (US) has put me in touch with an amazing looking wig shop which has wigs you can put under scarves, hats etc. Watch this space but no pics.....yet

Then today, things take a turn for the worse. J gives me my shot to boost white blood cells (he WAS watching Triangle Nurse last time, thankfully) and I see myself in the mirror, finally looking like someone with The Thing, and the tears come.

I have tried so hard to let it all flow over me, and prepare mentally - but suddenly seeing myself was a shock - I think everything else we have been through has been so quick and relatively easy (I healed so well from both ops, nothing has been visible to the outside world, life continues as normal) that suddenly seeing a baldie looking out at me - albeit with enough for a teeny ponytail and a wide hairband, hit me hard.

I am not going to be pretty for the next 6 months at least. A toughie to get your head round.

J of course is totally wonderful and says I'll be beautiful to him - and also makes me promise not to hide my baldness from him (yes, I had been considering trying). That makes me cry more. Dammit I hate this.

Then we get up and go our separate ways - me to my dog walk and J to work. A quick text later HE IS OK BEFORE I START THIS to let me know he has come off his bike (pedal, not motor) and is being checked out at A&E. He is fine - a few nasty scrapes and a bent bike - but please, enough now OK?

Apart from all that - chemo 2 has so far been kinder than chemo 1 - not even car sickness yet. I have taken more drugs, more religiously (even the just in case ones) and plan to carry on.

Marginally less zen-like and serene today, J xx