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.

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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