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