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
Thursday, 28 July 2011
Friday, 15 July 2011
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
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
Sunday, 10 July 2011
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
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
Sunday, 19 June 2011
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
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
Sunday, 12 June 2011
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
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
Tuesday, 31 May 2011
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
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
Wednesday, 25 May 2011
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
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
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