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
Thursday 15 December 2011
Wednesday 14 December 2011
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
So excited about our trip. Not in the least serene OR zen-like. Loads of love, Jo xx
Thursday 17 November 2011
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......
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
Thursday 6 October 2011
Friday 23 September 2011
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
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
Sunday 4 September 2011
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
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
Wednesday 24 August 2011
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
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
Thursday 11 August 2011
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
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
Thursday 28 July 2011
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
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
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
Wednesday 18 May 2011
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
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
Wednesday 11 May 2011
....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
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
Sunday 8 May 2011
Thursday 5 May 2011
Finding the right Syrup
Before The Thing happened to me, I assumed that the minute you started to have chemo, suddenly all your hair fell off. This is THE BIG THING that everyone knows about cancer - and how you can tell if someone has it - they have no hair. Obviously there are exceptions to this rule - lots of 44 year old men without The Thing have no hair - but generally baldness (especially on a woman or child) stamps "sick person" across their forehead. And then people start saying words like "Journey" and "How ARE you" a lot.
I still have hair, even in places I don't want it.
The weird thing is that while I absolutely know it is going to fall out (in a week or two), I continue to pretend to myself that it isn't - because, genuinely, I think that will be the single worst thing, mentally, about this whole bullshit. Hair is pretty much the only thing you can really change about your physical appearance without surgery (OK, and dieting/exercise, given) - and as such, it defines how you want others to see you.
Clearly, I have always wanted people to see me as a crazy person with frizzy Cornwall hair, who makes no effort at all about her appearance - but you know what I mean. I guess the thing is that I have always known that if I put a bit of effort into a blow-dry, and splash some cash on highlights, I can make it look halfway decent and that I can scrub up OK. I am vain and I admit it.
As a result, I find it almost impossible to believe that I am soon going to be Duncan Goodhew/George Dawes/Yul Brunner style bald. I can't get my head round the practicalities of baldness (wigs or scarves? On or off in bed? God - false eyelashes?) and it seems surreal to think about it. I practice with scarves and look hideous - and tell myself to get used to it.
I also carry on half believing that I am going to be the 1% who only experiences partial hair loss, whilst telling myself that I know I'm being ridiculous, and that I am going to have to grow up and face facts. God - it's so boring to argue with yourself.
So I plan a couple of wig finding sessions, one with Heavenly H for a serious wig (for formal occasions) and one with the Lorna Doone, who I suspect of secretly planning to turn me into a Ginger, for a fun one or two.
***********
Wig day arrives and I head off to meet HH at Lucky Plaza, where there are two proper wig shops. In Singapore, most of the shopping malls are like Westfield - modern, full of high end designer/high street shops, packed with people of all nationalities, shopping with a purpose that frankly both escapes and frightens me. In Orchard Road alone there are 20+ of these malls - all the size of Westfield and connecting through underground tunnels which are also full of shops.
Lucky Plaza is not like that.
It is one of the much older original Singaporean malls - full of little Mom and Pop stores and $5 watches. The clientele is VERY local, and on a Sunday is it packed to the rafters with Phillipina maids - two floors are dedicated entirely to random Phillipino foodstuffs...... Predictably, I love it there.
I get a text from HH saying she's delayed, so I go to the first shop and check it out. This is going to be harder than I was anticipating - Asian wigs come in black, platinum or grey (discarding, for the moment, the fluo pink and purple). Not a shade of mouse - sorry, "eagle" - to be seen. I decide to push on and settle into the hairdressers chair, at which point she rather rudely asks me which of my two colours I would like to match. I should add here that I am currently sporting the duracell battery look - there is simply no point in spending any money on doing my roots, so they are about 4 inches long now............
I settle on the blonde option, and she immediately puts a beige stocking on my head and tucks all my hair into it. This is NOT a good look. a) I am bald and this confirms it's not a look I should aspire towards b) it looks as though I am about to rob a bank.
Things don't improve much pulls when she pulls out Jan Leemings hair, then Dolly Partons (tempting....) and explains that all the rest are darker. So I agree to try on some darker ones and immediately get Justin Hawkins/Morticia Addams. Not Halle Berry then. Short dark ones are equally hideous - so feeling a bit flat, I go downstairs to try shop number 2. Thankfully HH says she'll be there in 5 mins...
Same deal in shop 2 - although the bank robber look is in a fetching fishnet this time which makes me feel and look Iike a drag queen. I select a few wigs to try on and they line up on their stands like an audience.
HH arrives and immediately dismisses "the audience" as being totally wrong. Somehow she gets Madame to open a drawer that wasn't offered to me and yea! Shades of non-platinum blonde hair poke out! Still nothing is right (could be something to do with the fact that I have no make-up on and am sitting under a fluorescent light - the problem might be with the face, not the hair?).
Suddenly Madame produces Anthea Turners hair - same colour, same rather jaunty flicky bits at the back - and it works! It actually suits me and is fun. It needs a bit of a trim but it's fine. So we buy it and go and have a coffee to celebrate.
*****************
We have all tried Anthea on now - and I look the best in her. This is gratifying on many levels (imagine if she suited J better than she suited me) and everyone agrees that won't be embarrassing to see me in her. So she goes on her stand, ready for a trim when the time comes. I feel so much better that she is there - I now know that I will only be bald now out of choice - and that is a huge huge relief.
So I call Lorna Doone (ha, foiled with the redhead plan) and we decide to go and have a pissy lunch on the river instead.
As zen-like and serene as ever, J xx
I still have hair, even in places I don't want it.
The weird thing is that while I absolutely know it is going to fall out (in a week or two), I continue to pretend to myself that it isn't - because, genuinely, I think that will be the single worst thing, mentally, about this whole bullshit. Hair is pretty much the only thing you can really change about your physical appearance without surgery (OK, and dieting/exercise, given) - and as such, it defines how you want others to see you.
Clearly, I have always wanted people to see me as a crazy person with frizzy Cornwall hair, who makes no effort at all about her appearance - but you know what I mean. I guess the thing is that I have always known that if I put a bit of effort into a blow-dry, and splash some cash on highlights, I can make it look halfway decent and that I can scrub up OK. I am vain and I admit it.
As a result, I find it almost impossible to believe that I am soon going to be Duncan Goodhew/George Dawes/Yul Brunner style bald. I can't get my head round the practicalities of baldness (wigs or scarves? On or off in bed? God - false eyelashes?) and it seems surreal to think about it. I practice with scarves and look hideous - and tell myself to get used to it.
I also carry on half believing that I am going to be the 1% who only experiences partial hair loss, whilst telling myself that I know I'm being ridiculous, and that I am going to have to grow up and face facts. God - it's so boring to argue with yourself.
So I plan a couple of wig finding sessions, one with Heavenly H for a serious wig (for formal occasions) and one with the Lorna Doone, who I suspect of secretly planning to turn me into a Ginger, for a fun one or two.
***********
Wig day arrives and I head off to meet HH at Lucky Plaza, where there are two proper wig shops. In Singapore, most of the shopping malls are like Westfield - modern, full of high end designer/high street shops, packed with people of all nationalities, shopping with a purpose that frankly both escapes and frightens me. In Orchard Road alone there are 20+ of these malls - all the size of Westfield and connecting through underground tunnels which are also full of shops.
Lucky Plaza is not like that.
It is one of the much older original Singaporean malls - full of little Mom and Pop stores and $5 watches. The clientele is VERY local, and on a Sunday is it packed to the rafters with Phillipina maids - two floors are dedicated entirely to random Phillipino foodstuffs...... Predictably, I love it there.
I get a text from HH saying she's delayed, so I go to the first shop and check it out. This is going to be harder than I was anticipating - Asian wigs come in black, platinum or grey (discarding, for the moment, the fluo pink and purple). Not a shade of mouse - sorry, "eagle" - to be seen. I decide to push on and settle into the hairdressers chair, at which point she rather rudely asks me which of my two colours I would like to match. I should add here that I am currently sporting the duracell battery look - there is simply no point in spending any money on doing my roots, so they are about 4 inches long now............
I settle on the blonde option, and she immediately puts a beige stocking on my head and tucks all my hair into it. This is NOT a good look. a) I am bald and this confirms it's not a look I should aspire towards b) it looks as though I am about to rob a bank.
Things don't improve much pulls when she pulls out Jan Leemings hair, then Dolly Partons (tempting....) and explains that all the rest are darker. So I agree to try on some darker ones and immediately get Justin Hawkins/Morticia Addams. Not Halle Berry then. Short dark ones are equally hideous - so feeling a bit flat, I go downstairs to try shop number 2. Thankfully HH says she'll be there in 5 mins...
Same deal in shop 2 - although the bank robber look is in a fetching fishnet this time which makes me feel and look Iike a drag queen. I select a few wigs to try on and they line up on their stands like an audience.
HH arrives and immediately dismisses "the audience" as being totally wrong. Somehow she gets Madame to open a drawer that wasn't offered to me and yea! Shades of non-platinum blonde hair poke out! Still nothing is right (could be something to do with the fact that I have no make-up on and am sitting under a fluorescent light - the problem might be with the face, not the hair?).
Suddenly Madame produces Anthea Turners hair - same colour, same rather jaunty flicky bits at the back - and it works! It actually suits me and is fun. It needs a bit of a trim but it's fine. So we buy it and go and have a coffee to celebrate.
*****************
We have all tried Anthea on now - and I look the best in her. This is gratifying on many levels (imagine if she suited J better than she suited me) and everyone agrees that won't be embarrassing to see me in her. So she goes on her stand, ready for a trim when the time comes. I feel so much better that she is there - I now know that I will only be bald now out of choice - and that is a huge huge relief.
So I call Lorna Doone (ha, foiled with the redhead plan) and we decide to go and have a pissy lunch on the river instead.
As zen-like and serene as ever, J xx
Friday 29 April 2011
So, chemo round 1...
So far, chemo round 1 is a wonderful, fantastic let down. God I really hope I'm not going to regret writing that tomorrow.
I grant you, the actual process of being in the opium den, with Triangle Smurf bringing out yet another bag of poison to put in my arm was about as much fun as, I don't know, a really really boring overlong lunch, with crap food and no wine, that you HAVE to stay at because it would be rude to leave. And you leave feeling spaced out and a bit sick - same deal really.
Over the next two days (I am now in day 3), I swallow too many anti-sick pills to count, but they do seem to be working. Largely by making me go to sleep. I finally get it sorted - the little ones are about an hours nap, the middle ones are 2-3 hours and the mothers are 3+ hours of deep sleep. So I chose my cocktail on how "out of it" I want to be, and for how long and it's working just fine.
This morning I take the dogs for a long walk - which is very soothing to the soul (I love the Chinese Cemetery early in the morning - so peaceful and natural - birdsong everywhere and no man made sounds).
Sadly I fall down a crack in the road and scrape my knee which is NOT what is required whilst white blood cells are low, so have to go home for emergency ER in the boot-room. Swabs, wipes, antiseptic wipes, antiseptic cream, spray on plaster - check! I am so not used to having to take care of myself quite so well........
Then J drives me back to the clinic for my regular (24 hours after chemo) white blood cell booster. After today, he will be giving me this jab at home, so he is in full student mode. I hope he's learning properly but he doesn't seem to be concentrating NEARLY hard enough. He reassures me he's given injections to oranges before, when in the army. That makes me feel better, then. Hmmmm.
I try and get out of Triangle Smurf whether I am going to start to feel bad. She assures me that if I can get past day 3 without too much sickness, then I should be ok. The jab will give me bone ache in my pelvis to be managed by nurofen for a couple of days and then I'll be well for the weekend.
I am assuming this is a "The Thing" kind of well, rather than "Way Hay let's get the Tequila shots in" kind of well, but we'll see. We've got 3 wedding parties to go to - so I best hunt out that red, white and blue after all.......
I am not posting this yet out of fear that The Thing will avenge this and come and hit me big time over the next day or so...
********
Triangle Smurf is a liar. Well that serves me right for being smug. Day 4 arrives with a vengeance. I feel like I've got flu, but without the fever - mega headache behind the eyes, sickness levels have gone up to "not actually being sick but expecting it any moment" levels with a bit of dry heaving thrown in. My back also feels as though I've slept in the most uncomfortable bed ever (not true - our bed is bliss - this is the bones in my back regenerating white blood cells. Good for them.)
J calls CC for help and advice, and she adjusts some dosages and brings a few of the "just in case" drugs into play. I immediately go to sleep for the next 12 hours and J and the kids go to watch some wedding or other......
Saturday morning arrives and is no better - I take more drugs, feel sick and go to sleep again.
Then suddenly I'm awake and feeling OK. I'm not about to crack open the tequila any time soon, but I eat lunch with everyone, and feel normal again.
I think this is what it is going to like.
As zen-like and serene as ever, J xx
I grant you, the actual process of being in the opium den, with Triangle Smurf bringing out yet another bag of poison to put in my arm was about as much fun as, I don't know, a really really boring overlong lunch, with crap food and no wine, that you HAVE to stay at because it would be rude to leave. And you leave feeling spaced out and a bit sick - same deal really.
Over the next two days (I am now in day 3), I swallow too many anti-sick pills to count, but they do seem to be working. Largely by making me go to sleep. I finally get it sorted - the little ones are about an hours nap, the middle ones are 2-3 hours and the mothers are 3+ hours of deep sleep. So I chose my cocktail on how "out of it" I want to be, and for how long and it's working just fine.
This morning I take the dogs for a long walk - which is very soothing to the soul (I love the Chinese Cemetery early in the morning - so peaceful and natural - birdsong everywhere and no man made sounds).
Sadly I fall down a crack in the road and scrape my knee which is NOT what is required whilst white blood cells are low, so have to go home for emergency ER in the boot-room. Swabs, wipes, antiseptic wipes, antiseptic cream, spray on plaster - check! I am so not used to having to take care of myself quite so well........
Then J drives me back to the clinic for my regular (24 hours after chemo) white blood cell booster. After today, he will be giving me this jab at home, so he is in full student mode. I hope he's learning properly but he doesn't seem to be concentrating NEARLY hard enough. He reassures me he's given injections to oranges before, when in the army. That makes me feel better, then. Hmmmm.
I try and get out of Triangle Smurf whether I am going to start to feel bad. She assures me that if I can get past day 3 without too much sickness, then I should be ok. The jab will give me bone ache in my pelvis to be managed by nurofen for a couple of days and then I'll be well for the weekend.
I am assuming this is a "The Thing" kind of well, rather than "Way Hay let's get the Tequila shots in" kind of well, but we'll see. We've got 3 wedding parties to go to - so I best hunt out that red, white and blue after all.......
I am not posting this yet out of fear that The Thing will avenge this and come and hit me big time over the next day or so...
********
Triangle Smurf is a liar. Well that serves me right for being smug. Day 4 arrives with a vengeance. I feel like I've got flu, but without the fever - mega headache behind the eyes, sickness levels have gone up to "not actually being sick but expecting it any moment" levels with a bit of dry heaving thrown in. My back also feels as though I've slept in the most uncomfortable bed ever (not true - our bed is bliss - this is the bones in my back regenerating white blood cells. Good for them.)
J calls CC for help and advice, and she adjusts some dosages and brings a few of the "just in case" drugs into play. I immediately go to sleep for the next 12 hours and J and the kids go to watch some wedding or other......
Saturday morning arrives and is no better - I take more drugs, feel sick and go to sleep again.
Then suddenly I'm awake and feeling OK. I'm not about to crack open the tequila any time soon, but I eat lunch with everyone, and feel normal again.
I think this is what it is going to like.
As zen-like and serene as ever, J xx
Tuesday 26 April 2011
'Twas the night before chemo.....
The next week is really very odd. It's a lovely long Easter weekend, which is gorgeous, but hanging over us is the fact that chemo starts on Tuesday, which is a bit of a sword of Damocles and as such, a bit of a dampener.
Added to which Tiny Tim is now in a wheelchair, rather than her crutches - which means that many of the fun things to do in Singapore are closed to her. Even swimming is sore.
But we have a fun time, and the kids go back to school - and J and I have a fantastic time on Easter Monday pretending to be millionaires at the top of Marina Bay Sands. It feels like the prisoners last cigarette.... Definitely a case of let's really enjoy this while we can.
Waiting for chemo is a bit like waiting for labour to begin. You know it's going to hurt, but you don't know how much; you know it's going to be messy (ditto); you know all the mechanics and the theory, but until it happens to you, you have no idea how it's going to feel. Everyone's experience of the side effects is different (and thanks to Dr Crippen, we are only too aware of all the lovely possible options), but we have no idea which ones are going to hit me.
And like childbirth, everyone lies (or is evasive) about what it's really like.
Oh, and there's a screaming bald thing at the end of it all.
So - chemo day arrives - and it's like having a badly timed return flight from holiday. J and I wander around not knowing quite what to do with ourselves before the appointment time - there isn't enough time to do anything properly, but rather too much time to do nothing with.
We turn up and are shown into what looks like a modern opium den - lots of cozy little cubbyholes with curtains across them, all containing an EZ-boy chair. Rushing around are several people in smurf outfits (ok, no hats, but everything else) carrying various implements of drug administration and hooking people up.
A smurf with triangular hair comes to look after us - her name is Yeti - you couldn't make this stuff up! She is shows us into our den and is sweet and explains what each of the million drugs they are going to give me will do and then she starts the process.
It takes ages, and each drug has it's own peculiar feeling - one makes me feel as if my earphones are going to pop out with a bizarre ear pressure session, one makes me feel like I've eaten Wasabi, one makes my bits tingle (but not in a nice way), one makes my ear feel as though it's melting. I get green spots at one point (that feeling you get just before you faint) and J holds my hand until it passes. I'm slightly spaced out throughout - they've given me some Benadryl in there somewhere too - which means I sadly can't focus on the Heroes Season 2 that I've downloaded for the occasion. Shame. I generously offer it to J but he's too busy holding my hand. I'm sure there will be time to watch it later.
Then its over and we drive home through the Singapore rain and I start to feel a bit car-sick. This may be related to J's anti taxi manoevering but who knows. I kiss the kids hello and go upstairs for a nice cup of tea and a biscuit. Meanwhile, J borrows a wheelbarrow to bring in all the pills I've been given on a "just in case" basis. Thank goodness BUPA is covering the bills.
So far so good. I feel as though I've lit a fuse somewhere and we are just waiting for the bomb to explode...... We wait and see.
As zen-like and serene as ever, J xx
Added to which Tiny Tim is now in a wheelchair, rather than her crutches - which means that many of the fun things to do in Singapore are closed to her. Even swimming is sore.
But we have a fun time, and the kids go back to school - and J and I have a fantastic time on Easter Monday pretending to be millionaires at the top of Marina Bay Sands. It feels like the prisoners last cigarette.... Definitely a case of let's really enjoy this while we can.
Waiting for chemo is a bit like waiting for labour to begin. You know it's going to hurt, but you don't know how much; you know it's going to be messy (ditto); you know all the mechanics and the theory, but until it happens to you, you have no idea how it's going to feel. Everyone's experience of the side effects is different (and thanks to Dr Crippen, we are only too aware of all the lovely possible options), but we have no idea which ones are going to hit me.
And like childbirth, everyone lies (or is evasive) about what it's really like.
Oh, and there's a screaming bald thing at the end of it all.
So - chemo day arrives - and it's like having a badly timed return flight from holiday. J and I wander around not knowing quite what to do with ourselves before the appointment time - there isn't enough time to do anything properly, but rather too much time to do nothing with.
We turn up and are shown into what looks like a modern opium den - lots of cozy little cubbyholes with curtains across them, all containing an EZ-boy chair. Rushing around are several people in smurf outfits (ok, no hats, but everything else) carrying various implements of drug administration and hooking people up.
A smurf with triangular hair comes to look after us - her name is Yeti - you couldn't make this stuff up! She is shows us into our den and is sweet and explains what each of the million drugs they are going to give me will do and then she starts the process.
It takes ages, and each drug has it's own peculiar feeling - one makes me feel as if my earphones are going to pop out with a bizarre ear pressure session, one makes me feel like I've eaten Wasabi, one makes my bits tingle (but not in a nice way), one makes my ear feel as though it's melting. I get green spots at one point (that feeling you get just before you faint) and J holds my hand until it passes. I'm slightly spaced out throughout - they've given me some Benadryl in there somewhere too - which means I sadly can't focus on the Heroes Season 2 that I've downloaded for the occasion. Shame. I generously offer it to J but he's too busy holding my hand. I'm sure there will be time to watch it later.
Then its over and we drive home through the Singapore rain and I start to feel a bit car-sick. This may be related to J's anti taxi manoevering but who knows. I kiss the kids hello and go upstairs for a nice cup of tea and a biscuit. Meanwhile, J borrows a wheelbarrow to bring in all the pills I've been given on a "just in case" basis. Thank goodness BUPA is covering the bills.
So far so good. I feel as though I've lit a fuse somewhere and we are just waiting for the bomb to explode...... We wait and see.
As zen-like and serene as ever, J xx
Saturday 23 April 2011
Step 1(b) - complete - check!
A few more days of hospital routine, and Drain 1 and I are released back home. I have a brief discussion with the discharge nurse, who is trying to send me home with paracetamol only. I don't think so. She gets Prof T off the golf course and he agrees that horse sized painkillers are in order, and off we go. He arranges an appointment for the following day - I consider worrying about whether he's had the results or not but just don't have the energy.
Again, its bliss to be home. I go straight upstairs and collapse into bed - this is a whole load worse than last time and I hurt everywhere still - but its mainly around the area of Drain 1....
The next day we get the drain out and it's heavenly - 90% of the pain disappears at the same time. Lovely PT says that we won't get the results for a few more days, so we stop worrying about that. We also go and see a cardiologist......
One of the joys of chemo is that it can really mess with your heart function - so they have to monitor this closely throughout. Great news! I have a strong and healthy heart - and plan on keeping it that way!
J drops me at home and goes to pick up the kids. He calls me to say he's had a missed call from Efficient Nurse - it may be the results - but her line is busy. I pick up the phone to call her and find I can't bring myself to press the buttons - what if the results are bad? I start worrying about making it for J's 50th, I's wedding, J minor's children..... I pick up the phone and put it down about 5 times and finally call - and get the answer phone. This comes as a huge relief, as it means that I haven't procrastinated, but I still haven't had to hear the results.
J arrives home thank god - so he'll be here when the phone rings. And then it does - and it's totally wonderful Prof T, with a huge smile in his voice, to say the results are completely clear. He says that we clearly just caught it as the first cells were going into the lymph and that we have been very very lucky.
J is listening through the doorway and his grin is watery. We have a massive hug and the relief is enormous.
I also have a blinding flash of understanding. You know those really irritating emails we all get, at least once a week, saying "this cartoon lady is running the world for The Thing awareness - please pass her on". I have never "got" them - I just didn't see the point. They aren't funny, they don't raise money, they don't "do" anything - they are just more of those silly chain emails that steal your email address and pass it on to people in Nigeria who want to share their millions with you......
.....but I suddenly realized that I am so, so aware of The Thing. I knew as soon as I felt a lump that this was Not Good and that I must not dilly dally. As a result, we have have caught it early, which has to be good news. So people, that running lady has done me a really good service - and all of you - check your boobs. Now. Properly. And every month.
As zen-like and serene as ever, J xxs
Again, its bliss to be home. I go straight upstairs and collapse into bed - this is a whole load worse than last time and I hurt everywhere still - but its mainly around the area of Drain 1....
The next day we get the drain out and it's heavenly - 90% of the pain disappears at the same time. Lovely PT says that we won't get the results for a few more days, so we stop worrying about that. We also go and see a cardiologist......
One of the joys of chemo is that it can really mess with your heart function - so they have to monitor this closely throughout. Great news! I have a strong and healthy heart - and plan on keeping it that way!
J drops me at home and goes to pick up the kids. He calls me to say he's had a missed call from Efficient Nurse - it may be the results - but her line is busy. I pick up the phone to call her and find I can't bring myself to press the buttons - what if the results are bad? I start worrying about making it for J's 50th, I's wedding, J minor's children..... I pick up the phone and put it down about 5 times and finally call - and get the answer phone. This comes as a huge relief, as it means that I haven't procrastinated, but I still haven't had to hear the results.
J arrives home thank god - so he'll be here when the phone rings. And then it does - and it's totally wonderful Prof T, with a huge smile in his voice, to say the results are completely clear. He says that we clearly just caught it as the first cells were going into the lymph and that we have been very very lucky.
J is listening through the doorway and his grin is watery. We have a massive hug and the relief is enormous.
I also have a blinding flash of understanding. You know those really irritating emails we all get, at least once a week, saying "this cartoon lady is running the world for The Thing awareness - please pass her on". I have never "got" them - I just didn't see the point. They aren't funny, they don't raise money, they don't "do" anything - they are just more of those silly chain emails that steal your email address and pass it on to people in Nigeria who want to share their millions with you......
.....but I suddenly realized that I am so, so aware of The Thing. I knew as soon as I felt a lump that this was Not Good and that I must not dilly dally. As a result, we have have caught it early, which has to be good news. So people, that running lady has done me a really good service - and all of you - check your boobs. Now. Properly. And every month.
As zen-like and serene as ever, J xxs
Friday 22 April 2011
More surgery.
So, back to the drawing board. Or the operating table, more accurately.
Surgery's booked for 5pm, so we all go to Universal Studios for the day, as you do. We have a really lovely day, much helped by the free "fast passes" we were given because of I's wheelchair (she has badly sprained her ankle playing rugby - and is on crutches - but we hired one for the day). We all love going past the hour long queues and have to practice our "not smug at all" faces.
Poor I is forced to go on The Mummy ride because without her, we have to queue. She sensibly puts her foot down (metaphorically) for the gut churning, utterly terrifying Space City ride. We are all relieved.
Then everyone drops me off at the hospital and I feel like I'm in Groundhog Day. But I know what the pants are for, I know the nurses names, I know the drill. I even know how to tie the gown.
Lovely Prof T comes to check on me before surgery. No black pen this time. I ask for pre- med and he says of course. The anaethatist comes and I ask for pre-med and YEA! he gives it to me - and the edges start to get blurry. This is soooooo much better than last time.
The chatty nurses come and wheel me straight into the operating theatre and I breath gas and I fall asleep. Bliss.
I wake up and FUCK ME it hurts. Everywhere. I tell everyone, loudly and they all start being busy. Lovely Prof T is there too making soothing noises and I tell him it hurts. I keep telling everyone that it really really hurts (stoical, me? I don't think so) as I'm not sure they are doing it as fast as they can. Eventually the pethadin starts to work.
After a quick snooze, I'm relaxed enough to sit up and assess the damage. First off, I notice that my friend, drain 1, is back. Great. Weirdly I don't find her nearly as offensive as last time - am I getting inured to all the body fluid stuff? Then I spot that I've got a drip in my toe - curious, but ok - and, oh look, an odd lump in my right arm (the port), surrounded by a fantastic bruise. My armpit (and new boob) is mummified so I can't check that out yet, but even with the pethadin I know it's extremely sore.
My poor body is so abused, and I feel like crap - I desperately hope that this will all be worth it........
As zen-like and serene as ever, J xx
Surgery's booked for 5pm, so we all go to Universal Studios for the day, as you do. We have a really lovely day, much helped by the free "fast passes" we were given because of I's wheelchair (she has badly sprained her ankle playing rugby - and is on crutches - but we hired one for the day). We all love going past the hour long queues and have to practice our "not smug at all" faces.
Poor I is forced to go on The Mummy ride because without her, we have to queue. She sensibly puts her foot down (metaphorically) for the gut churning, utterly terrifying Space City ride. We are all relieved.
Then everyone drops me off at the hospital and I feel like I'm in Groundhog Day. But I know what the pants are for, I know the nurses names, I know the drill. I even know how to tie the gown.
Lovely Prof T comes to check on me before surgery. No black pen this time. I ask for pre- med and he says of course. The anaethatist comes and I ask for pre-med and YEA! he gives it to me - and the edges start to get blurry. This is soooooo much better than last time.
The chatty nurses come and wheel me straight into the operating theatre and I breath gas and I fall asleep. Bliss.
I wake up and FUCK ME it hurts. Everywhere. I tell everyone, loudly and they all start being busy. Lovely Prof T is there too making soothing noises and I tell him it hurts. I keep telling everyone that it really really hurts (stoical, me? I don't think so) as I'm not sure they are doing it as fast as they can. Eventually the pethadin starts to work.
After a quick snooze, I'm relaxed enough to sit up and assess the damage. First off, I notice that my friend, drain 1, is back. Great. Weirdly I don't find her nearly as offensive as last time - am I getting inured to all the body fluid stuff? Then I spot that I've got a drip in my toe - curious, but ok - and, oh look, an odd lump in my right arm (the port), surrounded by a fantastic bruise. My armpit (and new boob) is mummified so I can't check that out yet, but even with the pethadin I know it's extremely sore.
My poor body is so abused, and I feel like crap - I desperately hope that this will all be worth it........
As zen-like and serene as ever, J xx
Don't get too comfortable.
This morning we get an email from CC. She has been consulting her colleagues in Australia, UK and NY about my case (did I mention I am weird for some reason? No-one knows what to do with me...) and she thinks we should talk before starting chemo.
J and I discuss what we think this means, and decide that she is probably going to suggest changing to the other chemo regime. We are ok with this, so go along to see her in a cheerful frame of mind. Foolish foolish people.
So, we arrive and have a chat about the weather (the weather? It's always the same in Singapore, but still it's something to chat about..... "It's a hot one today, la"). J is almost late as always, but just makes it in time.
CC then shows us two emails from Important People, both of which say that I should have had my axilla (armpit) nodes taken out and tested during the surgery - this is why no-one knows what to do with me.
The reason they didn't take out my nodes during the surgery is that there is a 10% chance of lymphodema after surgery (over time) ie a fat, swollen, not moving much, arm. Dr Crippen felt that radio was a better option (and to give him his due, recent studies agree with him - but those studies were all for people who had to have radio ANYWAY, not me).
So now we have to decide whether I am going back for more surgery, or whether we stick with plan A. Back to the blindfold forgery detection. We have a hugely non-conclusive 2 hour discussion with CC (predictably, I cry - but largely through frustration this time) where we can't quite get to the bottom of why these experts are suggesting this path. At the 11th hour, J asks the breakthrough question, and we finally understand that if the nodes are positive, taking them out is a way more effective path than zapping them.
We then fix appointments with Lovely Prof T and a radio oncologist to try and make sure this is the right conclusion.
Prof T is not quite as Lovely today - I suspect because I have gone from Brave Smiley Patient to Weird Ranting Person. I am angry - because I've got to go through more surgery - because no-one mentioned this might happen - because, Christ, how are we going to explain this to the children - because it's not bloody fair that The Thing has picked US in its lottery - just because.
So I vent, and he listens, and he agrees and he understands. Then J gently stops me and we go home.
Final appointment with Smiley Radiographer. She is dear, and says there is no question about it, we should go for the surgery. So we book it for the next day. This is Singapore... no queues, no disorder.....
Off we go again. Oh, and CC does want to change the chemo regime - it is now going to be 4x fortnightly sessions of AC, followed by 12x weekly sessions of Taxol plus Carboplatin. She wants to throw everything at it, and we agree - but as I have such delicate ladylike veins, 12 weekly infusions will be a nightmare, so we decide to get a port put into my arm at the same time as the rest of the surgery.
As zen-like and serene as ever, J xx
J and I discuss what we think this means, and decide that she is probably going to suggest changing to the other chemo regime. We are ok with this, so go along to see her in a cheerful frame of mind. Foolish foolish people.
So, we arrive and have a chat about the weather (the weather? It's always the same in Singapore, but still it's something to chat about..... "It's a hot one today, la"). J is almost late as always, but just makes it in time.
CC then shows us two emails from Important People, both of which say that I should have had my axilla (armpit) nodes taken out and tested during the surgery - this is why no-one knows what to do with me.
The reason they didn't take out my nodes during the surgery is that there is a 10% chance of lymphodema after surgery (over time) ie a fat, swollen, not moving much, arm. Dr Crippen felt that radio was a better option (and to give him his due, recent studies agree with him - but those studies were all for people who had to have radio ANYWAY, not me).
So now we have to decide whether I am going back for more surgery, or whether we stick with plan A. Back to the blindfold forgery detection. We have a hugely non-conclusive 2 hour discussion with CC (predictably, I cry - but largely through frustration this time) where we can't quite get to the bottom of why these experts are suggesting this path. At the 11th hour, J asks the breakthrough question, and we finally understand that if the nodes are positive, taking them out is a way more effective path than zapping them.
We then fix appointments with Lovely Prof T and a radio oncologist to try and make sure this is the right conclusion.
Prof T is not quite as Lovely today - I suspect because I have gone from Brave Smiley Patient to Weird Ranting Person. I am angry - because I've got to go through more surgery - because no-one mentioned this might happen - because, Christ, how are we going to explain this to the children - because it's not bloody fair that The Thing has picked US in its lottery - just because.
So I vent, and he listens, and he agrees and he understands. Then J gently stops me and we go home.
Final appointment with Smiley Radiographer. She is dear, and says there is no question about it, we should go for the surgery. So we book it for the next day. This is Singapore... no queues, no disorder.....
Off we go again. Oh, and CC does want to change the chemo regime - it is now going to be 4x fortnightly sessions of AC, followed by 12x weekly sessions of Taxol plus Carboplatin. She wants to throw everything at it, and we agree - but as I have such delicate ladylike veins, 12 weekly infusions will be a nightmare, so we decide to get a port put into my arm at the same time as the rest of the surgery.
As zen-like and serene as ever, J xx
I am empowered.
The kids are on holiday, the plan ahead is set, I feel great (except when someone elbows me in the boob. It's amazing how often that happens). The fortnight ahead looks pretty good - and we plan to enjoy it before the start of chemo.
The kids go zip-wiring, cinema viewing, waterpark splashing. I say yes to everything. Life is good (if a little expensive).
I decide to have my hair cut shorter - mainly because I don't want to go from long hair to George Dawes overnight. The received wisdom is that long hair on the pillow is very demoralising in the morning - and not easy for husbands and children to deal with either.
The added bonus is that if I hate it - hey, it's all going to fall out anyway, so no big deal right? So the appointment is booked and I feel as though I am sticking a finger (or two, not sure) up at The Thing - I am the one in control here, OK, so there......
The problem is that I don't want short hair.
I carry on feeling brave and empowered until the night before the big day - lying in bed I can see the edge of my reflection in the mirror and I like it. Probably for the first time in 30 years, I like my hair and I don't want to cut it off. Isn't that a metaphor for life - appreciate what you have, don't always wish for more/less/different - when it is under threat, you suddenly see that it's actually great and you are bloody lucky to have it. Hey ho.
I try and say this to J (not the "appreciate life" thing, sadly, the "I don't want to cut it off" thing). He sensibly tells me not to, then. I explain that I have to, and then start to cry as I say that I am going to look old and sensible and frizzy and Mumsy. He holds me tight and says he's always fancied Halle Berry. I hit him and cry some more. But I'm glad he knows how I feel and it makes me feel better. Although perhaps a teeny bit shallow.
Next morning I arrive at Heavenly H's house for the chop. I am determined not to cry and she has been primed with the No Sympathy, No Journey rules. She gives me a big hug and a cup of tea and we set to work. She says she's going to decide what to do as she goes along - how the hair falls will tell her how to cut - but she will stay medium length and we can always go shorter.
As she cuts (blimey I've got a lot of hair) she is Heavenly and offers to go wig shopping with me and says she'll cut a wig to suit me and help with scarves etc etc. And suddenly it's all done. I LOVE IT! I can't describe the feeling of relief - I look 5 years younger, and not old or sensible or frizzy or Mumsy. And it's deliciously cool in the heat. Take that, The Thing, and put it where the sun don't shine.......
J, bless him, says it's exactly what he was hoping for. He's lying of course, I know he wanted the Halle Berry, but he'll get over it.
As zen-like and serene as ever, J xx
The kids go zip-wiring, cinema viewing, waterpark splashing. I say yes to everything. Life is good (if a little expensive).
I decide to have my hair cut shorter - mainly because I don't want to go from long hair to George Dawes overnight. The received wisdom is that long hair on the pillow is very demoralising in the morning - and not easy for husbands and children to deal with either.
The added bonus is that if I hate it - hey, it's all going to fall out anyway, so no big deal right? So the appointment is booked and I feel as though I am sticking a finger (or two, not sure) up at The Thing - I am the one in control here, OK, so there......
The problem is that I don't want short hair.
I carry on feeling brave and empowered until the night before the big day - lying in bed I can see the edge of my reflection in the mirror and I like it. Probably for the first time in 30 years, I like my hair and I don't want to cut it off. Isn't that a metaphor for life - appreciate what you have, don't always wish for more/less/different - when it is under threat, you suddenly see that it's actually great and you are bloody lucky to have it. Hey ho.
I try and say this to J (not the "appreciate life" thing, sadly, the "I don't want to cut it off" thing). He sensibly tells me not to, then. I explain that I have to, and then start to cry as I say that I am going to look old and sensible and frizzy and Mumsy. He holds me tight and says he's always fancied Halle Berry. I hit him and cry some more. But I'm glad he knows how I feel and it makes me feel better. Although perhaps a teeny bit shallow.
Next morning I arrive at Heavenly H's house for the chop. I am determined not to cry and she has been primed with the No Sympathy, No Journey rules. She gives me a big hug and a cup of tea and we set to work. She says she's going to decide what to do as she goes along - how the hair falls will tell her how to cut - but she will stay medium length and we can always go shorter.
As she cuts (blimey I've got a lot of hair) she is Heavenly and offers to go wig shopping with me and says she'll cut a wig to suit me and help with scarves etc etc. And suddenly it's all done. I LOVE IT! I can't describe the feeling of relief - I look 5 years younger, and not old or sensible or frizzy or Mumsy. And it's deliciously cool in the heat. Take that, The Thing, and put it where the sun don't shine.......
J, bless him, says it's exactly what he was hoping for. He's lying of course, I know he wanted the Halle Berry, but he'll get over it.
As zen-like and serene as ever, J xx
Dr Crippen has to go.
We schedule a quick meeting with Dr Crippen to discuss "what now" - we know nothing needs to happen for a month, the surgery needs to heal, so we go in feeling up to speed with the problem, in control and good about moving on to step two - chemo.
That feeling lasts, oh, 10 minutes, and we leave an hour later with the schedule of treatment in hand - and more bloody statistics about whether I am likely to die or not. Do you know, I don't want to hear those - every 1% is a person and only The Thing knows whether I am going to be that person or not. I. DON'T. WANT. TO. KNOW. Unless you can tell me there is 100% success rate. I will do the best I can, and be as positive as I can be throughout this - but I just don't need to hear the stats thanks.
We leave with me in tears again, and decide we need a new oncologist.
Onc #2 Superior Sage
We meet SS on the advice of a number of expats. She immediately looks at the treatment schedule suggested by Dr Crippen and says "He knows F all". OK, she didn't use those words, quite, but thats what she meant and also what we heard. She apparently invented the treatment he was suggesting and it simply wasn't aggressive enough for The Thing that I have. She suggested a whole new approach......
Only two things against her: the nurse was playing on her iPhone while taking my blood pressure. I'm sorry, but not acceptable (I have decided to be very demanding about all this) and also, SS didn't acknowledge that J even existed even though he was right there all the time. I know this is all about me, me, me - but actually The Thing has happened to both of us and OUR life, not just to me. Failure to understand that has to be a bad thing.
Also parking was a nightmare.
So now we have two totally different treatment approaches, one apparently from a total fuckwit who wouldn't know his breast from his boiled egg (but who was recommended by Lovely Prof T.....hmmmm.....disturbing). We decide we need a third opinion and go and see...
Onc #3 Consulting Chemo (CC)
Off to see CC on the advice of one of J's partners, who M-I-L is a big honcho at the Singapore BCF. I love her immediately because she says that I am stage 1b, not stage 2 after all - this is because although one lymph node is positive, it is only microscopically positive (ie The Thing there is less than a millimetre big). 5 years ago they would not have seen it and so I would have been classed as stage 1. Also, she checks the details with the lab technicians, and although the lump was 2cm big, The Thing itself was only 1.8cm. This makes a big difference to staging and prognosis, apparently.
I love her more because she agrees that this is a technicality, but that it just feels better and also it feels as though its the first positive news we've had for ever. She talks to us both. A lot. We are going to have to get used to this because this is what CC does. She explains. She gives options and opinions. She makes sure we understand what decisions we need to make, and what the key points of our decision are. Frustratingly at this point, she explains that:
- either of the two regimes are appropriate because I'm a borderline case
- she also invented Dr Crippens suggestion (!) and tends towards it
- she will get further advice from around the world
We've got weeks before we have to make any kind of decision so we go home and think about it.
This is a black period, and hard to explain how it feels.... To have to make a gamble - or choice, call it what you will - between two things, when it is your life which is the stake. It's like being blind and being asked to decide which painting is real and which is fake - in the knowledge that they may kill you if you get it wrong. The thing that we are starting to learn about The Thing is that there are no certainties, you can never be right (or wrong), it's all judgment and the balance of probabilities - hence all the horrible statistics you have to take in.
Anyway, we all come to a decision that I will be taking 3 cycles of FEC (3 weeks each) followed by 3 cycles of Taxotere (also 3 weekly cycles) with a grand finale of 25 days radio. This is, weirdly, the treatment recommended by Dr Crippen, so it all comes full circle - but he still is not forgiven.
All due to start the week before Easter. It feels great to know what we are doing, and to have a plan.
As zen-like and serene as ever, J xx
That feeling lasts, oh, 10 minutes, and we leave an hour later with the schedule of treatment in hand - and more bloody statistics about whether I am likely to die or not. Do you know, I don't want to hear those - every 1% is a person and only The Thing knows whether I am going to be that person or not. I. DON'T. WANT. TO. KNOW. Unless you can tell me there is 100% success rate. I will do the best I can, and be as positive as I can be throughout this - but I just don't need to hear the stats thanks.
We leave with me in tears again, and decide we need a new oncologist.
Onc #2 Superior Sage
We meet SS on the advice of a number of expats. She immediately looks at the treatment schedule suggested by Dr Crippen and says "He knows F all". OK, she didn't use those words, quite, but thats what she meant and also what we heard. She apparently invented the treatment he was suggesting and it simply wasn't aggressive enough for The Thing that I have. She suggested a whole new approach......
Only two things against her: the nurse was playing on her iPhone while taking my blood pressure. I'm sorry, but not acceptable (I have decided to be very demanding about all this) and also, SS didn't acknowledge that J even existed even though he was right there all the time. I know this is all about me, me, me - but actually The Thing has happened to both of us and OUR life, not just to me. Failure to understand that has to be a bad thing.
Also parking was a nightmare.
So now we have two totally different treatment approaches, one apparently from a total fuckwit who wouldn't know his breast from his boiled egg (but who was recommended by Lovely Prof T.....hmmmm.....disturbing). We decide we need a third opinion and go and see...
Onc #3 Consulting Chemo (CC)
Off to see CC on the advice of one of J's partners, who M-I-L is a big honcho at the Singapore BCF. I love her immediately because she says that I am stage 1b, not stage 2 after all - this is because although one lymph node is positive, it is only microscopically positive (ie The Thing there is less than a millimetre big). 5 years ago they would not have seen it and so I would have been classed as stage 1. Also, she checks the details with the lab technicians, and although the lump was 2cm big, The Thing itself was only 1.8cm. This makes a big difference to staging and prognosis, apparently.
I love her more because she agrees that this is a technicality, but that it just feels better and also it feels as though its the first positive news we've had for ever. She talks to us both. A lot. We are going to have to get used to this because this is what CC does. She explains. She gives options and opinions. She makes sure we understand what decisions we need to make, and what the key points of our decision are. Frustratingly at this point, she explains that:
- either of the two regimes are appropriate because I'm a borderline case
- she also invented Dr Crippens suggestion (!) and tends towards it
- she will get further advice from around the world
We've got weeks before we have to make any kind of decision so we go home and think about it.
This is a black period, and hard to explain how it feels.... To have to make a gamble - or choice, call it what you will - between two things, when it is your life which is the stake. It's like being blind and being asked to decide which painting is real and which is fake - in the knowledge that they may kill you if you get it wrong. The thing that we are starting to learn about The Thing is that there are no certainties, you can never be right (or wrong), it's all judgment and the balance of probabilities - hence all the horrible statistics you have to take in.
Anyway, we all come to a decision that I will be taking 3 cycles of FEC (3 weeks each) followed by 3 cycles of Taxotere (also 3 weekly cycles) with a grand finale of 25 days radio. This is, weirdly, the treatment recommended by Dr Crippen, so it all comes full circle - but he still is not forgiven.
All due to start the week before Easter. It feels great to know what we are doing, and to have a plan.
As zen-like and serene as ever, J xx
The Big Unveiling
A week passes (we are now 14 days post-op and about 5 weeks since The Thing first appeared in the shower) and tomorrow is the day of the big unveiling.
Suddenly I can't wait, in a "poking the presents, picking the scab, night-before-Xmas kind of can't wait" kind of way. I NEED to know what it looks like. Before I show it to J. So that if it's awful, I can make a joke out of it and prepare him, so he doesn't have to pretend it's OK.
I sneak into the bathroom and take off the plaster. It's not great, but it's also not hideous. I feel warmly towards it - it's battle scarred but perky. The scar is not red and raised, well only a bit in some places, and there are scabs. But he has done a miracle with the nipple - using what was left of the brown bit, he has twisted and stitched and left me what looks like a nipple, only a lot smaller. A nipplette if you like. All in all the overall effect is just fine, it really is, and (between you and me) my career as a Victoria's Secret model has been slowing down recently - I had been considering giving it up anyway - so it's no big deal.......
I won't post a picture - but in true Young Farmer style - if you show me yours.........
So I unveil a day ahead of schedule, and it seems J does still fancy me, so phew.....tomorrow is another day......
As zen-like and serene as ever, J xx
Suddenly I can't wait, in a "poking the presents, picking the scab, night-before-Xmas kind of can't wait" kind of way. I NEED to know what it looks like. Before I show it to J. So that if it's awful, I can make a joke out of it and prepare him, so he doesn't have to pretend it's OK.
I sneak into the bathroom and take off the plaster. It's not great, but it's also not hideous. I feel warmly towards it - it's battle scarred but perky. The scar is not red and raised, well only a bit in some places, and there are scabs. But he has done a miracle with the nipple - using what was left of the brown bit, he has twisted and stitched and left me what looks like a nipple, only a lot smaller. A nipplette if you like. All in all the overall effect is just fine, it really is, and (between you and me) my career as a Victoria's Secret model has been slowing down recently - I had been considering giving it up anyway - so it's no big deal.......
I won't post a picture - but in true Young Farmer style - if you show me yours.........
So I unveil a day ahead of schedule, and it seems J does still fancy me, so phew.....tomorrow is another day......
As zen-like and serene as ever, J xx
Thursday 21 April 2011
Step one - complete - check!
I wake up feeling as though I've been kicked in the boobs and more annoyingly, woken up from a fantastic sleep. Lovely Prof T is there saying it all went really well and smiling a lot. I smile back. He's so nice.....
Ah....pethadin! Haven't had that for a decade or so! I'd forgotten how well it works....
I feel great! This is amazing! I look down - Oh - what's that hanging off me? Meet my two new friends - drain 1 and drain 2... God they are disgusting - I immediately ask the nurse to put them in a plastic bag so I can't see them. She looks at me as if I'm mad - but please, who wants to look at bottles full of Stuff That Should Be Inside You? She picks up drain one and waves it at me - I am nearly sick - before laughing and putting it back on the floor. She is clearly a sadist - need to watch out for that one. Asians simply DO NOT UNDERSTAND the difference between stuff you want to see (pretty, nice things) and stuff you don't (blood, needles, gunk) - but more of that later....
I check my mailbox and am overwhelmed by all the emails and texts flooding in - no journeys, pink bloody ribbons or anything - they pretty much all say "we love you" in your own "how are you, you fat tart" sweet ways.
J and the kids arrive bearing chocolate and big smiles. We all agree that the drains are gross and put them in a Crabtree and Evelyn bag, which is a tasteful improvement. They leave and I tuck into to steak and mash (this IS Singapore!).
More of the same for 24 hours - until (cue screechy violins) Dr Crippen walks through the door. He says they analyzed The Thing and it's in one of the lymph nodes (the bad ones) and it's grade 3 (there are only 3) and it's triple negative (the most aggressive, most recurring, least treatable type). Then he says we'll need the most aggressive chemo AND radio and then he says goodbye and leaves.
I cry. No pretense at Demi here at all - it's loud and it's not pretty. I hate him. I hate The Thing. Fuck - I might die. Really. I. Might. Die. Now, understand me, this thought has gone through my head a few times before now (normally in meetings with Dr Crippen, or around 3 am) but I'm doing a good job of believing Lovely Prof T when he says I'm going to be fine. Sometimes part of me is lagging behind in this plan, but generally it works a treat. I call J and say something, god knows what, and he is at the hospital in about 5 seconds. We hug and cry and hold hands. He then goes to collect the kids from school but I feel calmer and much more accepting. Que sera sera. When did my life turn into a Doris Day movie?
A few more days and I go home. I wave goodbye to drain 1, but drain 2 hitches along for the ride - still appropriating my Crabtree and Evelyn bag. Bitch.
Amazingly I feel no pain to speak of at all - although I have a slightly worrying tendency to stop breathing if I don't focus on it. This doesn't leave a lot of brain power for doing anything else (imagine thinking breathe in, breathe out, all the time). Of course it's 11pm before I think of mentioning this to J - he's actually asleep at the time - and he sweetly promises to watch me while I fall asleep to make sure I carry on breathing.
The next day, Lovely Prof T tells me to stop the painkillers as they are causing this apnea. He's right and bizarrely there is still no pain.
I take a number of sneak looks at my boob. It looks ok, really it does, although I can't see the scar or nipple area at all. It's a fetching shade of yellow, and naked, it seems very round and high up but in a bra, is exactly like the other one. He's certainly got the volume right, but I'm not so sure about the shape - but I'm told that it takes 6 months to settle down - and then everything can be tweaked to match, so not something worth spending any energy thinking about. So I don't. But I do worry about whether The Scar will be hideous....
I am also wearing an elastic band round my chest to keep "little miss new boob" from rising up as it heals - but I'm getting bad about wearing it - it's tight and it looks funny and it hurts my armpit and it smells.
Loads of lounging about and rubbish American drama series for a few more days, then time for stitches and drain to come out. We rock up to Lovely Prof Ts office, and having filled in the forms, we go in.
The forms! How can I not mentioned this bizarre process yet - BUPA is covering the cost of everything to do with The Thing, which means that each time we see a doctor, a 5 page form has to be filled in. If we see, in the space of one hour, Lovely Prof T, Dr Crippen, Biopsy Man and maybe our GP - that's 20 pages of form filling. Each time.
Someone needs to get a consultant onto that process - it offends me every time.
Where was I? Ah yes - stitches out. Nothing remarkable to note here, except that I still don't get to see The Scar as a new plaster is put on by Efficient Nurse immediately. We go home with the instructions to take the plaster off after a week - so the date for the big unveiling is set. I am increasingly worried about The Scar - purely because it is the fear of the unknown - in my mind's eye I have a jagged raised red gash where my smooth round (well, ok, naturally sloping) boob used to me. It gets bigger and more hideous every time I think about it.......
As we leave, Efficient Nurse gives us my file with all details, histology, scans etc etc in it. Clipped to the top is a flyer for a local restaurant - with some scrummy looking curries advertised. Always one to think of my stomach at all times, I suggest to J than we go there for lunch. He squirms and hides the picture. Turns out it's a high definition photo of what they took out, complete with crowning nipple (I'd thought that was a garnish). OMG that sooooo falls into the category of Things I Don't Want to See and I will never, repeat never, want to eat Cauliflower Dhall ever again.
Loads more lovely cards, flowers, emails - and am starting to be brave enough for a few phone calls. One or two people have to go onto the naughty step for breaking the No Sympathy, No Journey rule but I love you all.
As zen-like and serene as ever, J xx
Ah....pethadin! Haven't had that for a decade or so! I'd forgotten how well it works....
I feel great! This is amazing! I look down - Oh - what's that hanging off me? Meet my two new friends - drain 1 and drain 2... God they are disgusting - I immediately ask the nurse to put them in a plastic bag so I can't see them. She looks at me as if I'm mad - but please, who wants to look at bottles full of Stuff That Should Be Inside You? She picks up drain one and waves it at me - I am nearly sick - before laughing and putting it back on the floor. She is clearly a sadist - need to watch out for that one. Asians simply DO NOT UNDERSTAND the difference between stuff you want to see (pretty, nice things) and stuff you don't (blood, needles, gunk) - but more of that later....
I check my mailbox and am overwhelmed by all the emails and texts flooding in - no journeys, pink bloody ribbons or anything - they pretty much all say "we love you" in your own "how are you, you fat tart" sweet ways.
J and the kids arrive bearing chocolate and big smiles. We all agree that the drains are gross and put them in a Crabtree and Evelyn bag, which is a tasteful improvement. They leave and I tuck into to steak and mash (this IS Singapore!).
More of the same for 24 hours - until (cue screechy violins) Dr Crippen walks through the door. He says they analyzed The Thing and it's in one of the lymph nodes (the bad ones) and it's grade 3 (there are only 3) and it's triple negative (the most aggressive, most recurring, least treatable type). Then he says we'll need the most aggressive chemo AND radio and then he says goodbye and leaves.
I cry. No pretense at Demi here at all - it's loud and it's not pretty. I hate him. I hate The Thing. Fuck - I might die. Really. I. Might. Die. Now, understand me, this thought has gone through my head a few times before now (normally in meetings with Dr Crippen, or around 3 am) but I'm doing a good job of believing Lovely Prof T when he says I'm going to be fine. Sometimes part of me is lagging behind in this plan, but generally it works a treat. I call J and say something, god knows what, and he is at the hospital in about 5 seconds. We hug and cry and hold hands. He then goes to collect the kids from school but I feel calmer and much more accepting. Que sera sera. When did my life turn into a Doris Day movie?
A few more days and I go home. I wave goodbye to drain 1, but drain 2 hitches along for the ride - still appropriating my Crabtree and Evelyn bag. Bitch.
Amazingly I feel no pain to speak of at all - although I have a slightly worrying tendency to stop breathing if I don't focus on it. This doesn't leave a lot of brain power for doing anything else (imagine thinking breathe in, breathe out, all the time). Of course it's 11pm before I think of mentioning this to J - he's actually asleep at the time - and he sweetly promises to watch me while I fall asleep to make sure I carry on breathing.
The next day, Lovely Prof T tells me to stop the painkillers as they are causing this apnea. He's right and bizarrely there is still no pain.
I take a number of sneak looks at my boob. It looks ok, really it does, although I can't see the scar or nipple area at all. It's a fetching shade of yellow, and naked, it seems very round and high up but in a bra, is exactly like the other one. He's certainly got the volume right, but I'm not so sure about the shape - but I'm told that it takes 6 months to settle down - and then everything can be tweaked to match, so not something worth spending any energy thinking about. So I don't. But I do worry about whether The Scar will be hideous....
I am also wearing an elastic band round my chest to keep "little miss new boob" from rising up as it heals - but I'm getting bad about wearing it - it's tight and it looks funny and it hurts my armpit and it smells.
Loads of lounging about and rubbish American drama series for a few more days, then time for stitches and drain to come out. We rock up to Lovely Prof Ts office, and having filled in the forms, we go in.
The forms! How can I not mentioned this bizarre process yet - BUPA is covering the cost of everything to do with The Thing, which means that each time we see a doctor, a 5 page form has to be filled in. If we see, in the space of one hour, Lovely Prof T, Dr Crippen, Biopsy Man and maybe our GP - that's 20 pages of form filling. Each time.
Someone needs to get a consultant onto that process - it offends me every time.
Where was I? Ah yes - stitches out. Nothing remarkable to note here, except that I still don't get to see The Scar as a new plaster is put on by Efficient Nurse immediately. We go home with the instructions to take the plaster off after a week - so the date for the big unveiling is set. I am increasingly worried about The Scar - purely because it is the fear of the unknown - in my mind's eye I have a jagged raised red gash where my smooth round (well, ok, naturally sloping) boob used to me. It gets bigger and more hideous every time I think about it.......
As we leave, Efficient Nurse gives us my file with all details, histology, scans etc etc in it. Clipped to the top is a flyer for a local restaurant - with some scrummy looking curries advertised. Always one to think of my stomach at all times, I suggest to J than we go there for lunch. He squirms and hides the picture. Turns out it's a high definition photo of what they took out, complete with crowning nipple (I'd thought that was a garnish). OMG that sooooo falls into the category of Things I Don't Want to See and I will never, repeat never, want to eat Cauliflower Dhall ever again.
Loads more lovely cards, flowers, emails - and am starting to be brave enough for a few phone calls. One or two people have to go onto the naughty step for breaking the No Sympathy, No Journey rule but I love you all.
As zen-like and serene as ever, J xx
A bit of nip and tuck
Surgery day arrives. What's feels really great is how organized we've been so that the kids won't feel it's a big deal. I will go to the hospital in a taxi which we have pre-ordered for 7:55am, J will take the kids to school before I leave at 7:50am, we'll all be really relaxed and I'll see them all after surgery and smile a lot.
7:45am text pings in from Comfort Cabs "Sorry, there are no cabs in your area, please try later". Oh. Helpful. Thanks. So now we have options:
1) J drops me at the hospital en route to school. It's too late to do this and get them there in time, so they will be late for class. To avoid detention, this involves getting a late pass from the office (including a detailed explanation of why you are late), and then of course explaining to your classmates why you are late....
2) We Phone-a-Friend to take me to hospital - but wait! - it's 7:50! - they are all on the school run
3) We brave it out and hope a taxi turns up. Downside of potentially missing surgery.
So we go with option 1 - I am by now NOT at all serene and Kanga like but trying my hardest - I hop out of the car at hospital with a cheery "see you later" and, now I think of it, "have a lovely day" and off they go to school. Of course everyone at school is simply wonderful, J charms them all and sorts it all out and there is no stress involved.....
Back in the hospital, I check in and am shown to my room - I love Singapore in these moments - my room is much like a hotel room. Sadly no Molten Brown in the bathroom but a little bag with toothpaste, soap, comb and flannel. Sweet.
The other joy was the outfit I now needed to get into. There were two immediate problems. Now I've seen loads of hospital dramas, ER, Greys Anatomy etc etc so I KNOW the gown goes on backwards. But how? There are about a million bits of string to tie - I give it a go but suspect I look like a macrame owl from the back and somehow know I've got it wrong.
The other problem were the two matching bath hats I was given. What are they for? Closer inspection shows that one has two holes in it - aha! The pin drops! Sexy surgical underwear! I'm so glad I spotted the holes - how mortifying would it have been to greet lovely Prof T wearing my pants on my head in a jaunty fashion.....
Prof T comes in with a a large magic marker and draws an enormously long line from my armpit, round the nipple on both sides, diagonally to the chestbone. "That's where I'll cut", he says. "Wouldn't do to get the wrong side hahahaha!". I hate him for a moment but laugh along. Then I have to sit up while he checks out both boobs (having, by the way, spent a good 5 minutes trying to get me out of the macrame owl. Efficient Nurse giggles a lot at this point. I hate her too but smile anyway.).
Apparently they are around 230-300 ml each - I mentally waste time trying to imagine this as a pint of beer but can't get my head around the conversion rate - with a slope on the upper side. He tries to make this sound like a good thing (he actually says "a lovely natural slope") but I know he means it's a bit saggy. I sneak a quick peak and am horrified by the big black line - how am I going to feel when it's a massive red scar - and more importantly, is J ever going to fancy me again? This is where I say goodbye to my old boob - and never look it again.
They will measure exact volume and put back in exactly what they took out.... OK, whatever......this is so not happening to me....
Give me the pre-meds now - I'm ready.
Two smiley chatty nurses come in and say they are ready to take me to surgery. Perhaps they are going to give me the pre-med? Nope - they wheel me off chatting. I check out both their boobs (oh god - is this what's ahead of me - a life of Benny Hill style tit peering?). We arrive in a waiting room where I fill in more forms (confirming that my name is Mrs Susan, etc etc) and meet the anaethatist. He seems very lovely - perhaps he's going to give me the pre-meds? Hmm it seems not. They leave me there for 10 mins with an extra blanket (I have three by this stage - the aircon Nazis are in full swing in the surgical ward). I start to quietly cry. I think I may have got the Demi Moore thing going here at last.
They then come and tell me not to cry, it will all be fine - and wheel me into the theatre. Hurrah! Time for pre-meds! Er....no....... They roll me onto the table and hook me up to various machines and disappear. Demi Moore speeds up big time. Add snot. I watch my heart rate rise every time someone comes through the door to wash something and amuse myself by using yoga techniques to bring it back down again. Hey, lying on the slab, you have to take all the fun you can get.
About 5 hours later (OK it was probably 5 mins) a hundred people in scrubs walk through the door and say "OK, we'll take it from here" - I breathe some gas and fall asleep.............
As zen-like and serene as ever, J xx
7:45am text pings in from Comfort Cabs "Sorry, there are no cabs in your area, please try later". Oh. Helpful. Thanks. So now we have options:
1) J drops me at the hospital en route to school. It's too late to do this and get them there in time, so they will be late for class. To avoid detention, this involves getting a late pass from the office (including a detailed explanation of why you are late), and then of course explaining to your classmates why you are late....
2) We Phone-a-Friend to take me to hospital - but wait! - it's 7:50! - they are all on the school run
3) We brave it out and hope a taxi turns up. Downside of potentially missing surgery.
So we go with option 1 - I am by now NOT at all serene and Kanga like but trying my hardest - I hop out of the car at hospital with a cheery "see you later" and, now I think of it, "have a lovely day" and off they go to school. Of course everyone at school is simply wonderful, J charms them all and sorts it all out and there is no stress involved.....
Back in the hospital, I check in and am shown to my room - I love Singapore in these moments - my room is much like a hotel room. Sadly no Molten Brown in the bathroom but a little bag with toothpaste, soap, comb and flannel. Sweet.
The other joy was the outfit I now needed to get into. There were two immediate problems. Now I've seen loads of hospital dramas, ER, Greys Anatomy etc etc so I KNOW the gown goes on backwards. But how? There are about a million bits of string to tie - I give it a go but suspect I look like a macrame owl from the back and somehow know I've got it wrong.
The other problem were the two matching bath hats I was given. What are they for? Closer inspection shows that one has two holes in it - aha! The pin drops! Sexy surgical underwear! I'm so glad I spotted the holes - how mortifying would it have been to greet lovely Prof T wearing my pants on my head in a jaunty fashion.....
Prof T comes in with a a large magic marker and draws an enormously long line from my armpit, round the nipple on both sides, diagonally to the chestbone. "That's where I'll cut", he says. "Wouldn't do to get the wrong side hahahaha!". I hate him for a moment but laugh along. Then I have to sit up while he checks out both boobs (having, by the way, spent a good 5 minutes trying to get me out of the macrame owl. Efficient Nurse giggles a lot at this point. I hate her too but smile anyway.).
Apparently they are around 230-300 ml each - I mentally waste time trying to imagine this as a pint of beer but can't get my head around the conversion rate - with a slope on the upper side. He tries to make this sound like a good thing (he actually says "a lovely natural slope") but I know he means it's a bit saggy. I sneak a quick peak and am horrified by the big black line - how am I going to feel when it's a massive red scar - and more importantly, is J ever going to fancy me again? This is where I say goodbye to my old boob - and never look it again.
They will measure exact volume and put back in exactly what they took out.... OK, whatever......this is so not happening to me....
Give me the pre-meds now - I'm ready.
Two smiley chatty nurses come in and say they are ready to take me to surgery. Perhaps they are going to give me the pre-med? Nope - they wheel me off chatting. I check out both their boobs (oh god - is this what's ahead of me - a life of Benny Hill style tit peering?). We arrive in a waiting room where I fill in more forms (confirming that my name is Mrs Susan, etc etc) and meet the anaethatist. He seems very lovely - perhaps he's going to give me the pre-meds? Hmm it seems not. They leave me there for 10 mins with an extra blanket (I have three by this stage - the aircon Nazis are in full swing in the surgical ward). I start to quietly cry. I think I may have got the Demi Moore thing going here at last.
They then come and tell me not to cry, it will all be fine - and wheel me into the theatre. Hurrah! Time for pre-meds! Er....no....... They roll me onto the table and hook me up to various machines and disappear. Demi Moore speeds up big time. Add snot. I watch my heart rate rise every time someone comes through the door to wash something and amuse myself by using yoga techniques to bring it back down again. Hey, lying on the slab, you have to take all the fun you can get.
About 5 hours later (OK it was probably 5 mins) a hundred people in scrubs walk through the door and say "OK, we'll take it from here" - I breathe some gas and fall asleep.............
As zen-like and serene as ever, J xx
Telling everyone.
So, the operation is booked, the knives are sharpened, I have been out and bought mindless books, magazines and "old person" spotty PJs. These were a tricky buy - my nightwear is restricted generally to something light from Jo Malone (Lime, Basil and Mandarin has been a favorite for a while) so where and what do you buy? The answer to "where" is of course M&S but I have no idea at this point what I'll be able to do with my arm post surgery - will I be able to post it into PJs? Will I be able to lift it over my had for a nightie? And there the temperature issue.
Those of you have never lived in Singapore may think I'm crazy - Singapore is 35 degrees all year round, right? Well yes - and no. You are entirely at the mercy of the air conditioning Nazi wherever you are. And every building has one. So you may actually need an argyll sweater at one minute and a little strappy vest the next. So I decide to buy a sensible pair of brushed cotton PJs and a silk nightshirt.......
And J and I decide that we have to tell everyone now - happily we still have the battle plan we had for letting everyone know we were moving to Singapore, and it's much the same. Although a little less exciting. But another life changing experience, just not really the one we had imagined. So we embark on a series of emails that will change everything.
Here I have to apologize for the round robin emails - but actually saying the words "I have The Thing" was not even happening in my head and I could not in a million years have ACTUALLY said to to any of you. So I copped out, in a major way. And I'm sorry (but would still do it the same way again...)
One of the things we specified early on is No Sympathy and that carries on. Humor is the coping mechanism we have always had in the dark times - J can always make me laugh however bad things are - and my friends are the same. You are allowed to say "it's crap" because it is - and also "your boobs were too small anyway" because I love you - but NOT "thinking of you as you go through this journey..." because that stuff goes on the kind of card in the nastier type of hallmark shop; also because it makes me cry.
While I'm there - and I paraphrase a lot here from Lisa Lynch (who I think I may have a bit of a crush on)....here are a few more banned phrases....
1). You've got quite a journey ahead. No. A journey implies a lovely trip, perhaps with a beach and a cocktail at the other end, loads of laughs and new stamps in your passport when you get home. The Thing is a disease, which I am really lucky they can treat, but it's horrible and painful and is ruining my life and how I planned it to turn out.
2) Stay Strong. Oh, there's an idea I hadn't thought of. D'you know, I was thinking about whether to stay strong or just chuck the towel in - I just couldn't decide which side I was going to come down on....but that tips it....
3) You'll get through this. Will I? I wish the doctors knew that.
OK! Now you are panicking about what the hell you CAN actually say. Forget the manual - forget the fact that you feel a bit awkward and just say anything (apart from Stay Strong etc etc) in the same way that you would if you saw me in Sainsburys. Actually all we need to know is that you care - and so many of you (old and new friends) have shown that in the most amazing way we are bowled over. Just don't think you've done it, now, OK - we are going to need you all more than ever over the next few months and we miss you. a lot.
As zen-like and serene as ever, J xx
Those of you have never lived in Singapore may think I'm crazy - Singapore is 35 degrees all year round, right? Well yes - and no. You are entirely at the mercy of the air conditioning Nazi wherever you are. And every building has one. So you may actually need an argyll sweater at one minute and a little strappy vest the next. So I decide to buy a sensible pair of brushed cotton PJs and a silk nightshirt.......
And J and I decide that we have to tell everyone now - happily we still have the battle plan we had for letting everyone know we were moving to Singapore, and it's much the same. Although a little less exciting. But another life changing experience, just not really the one we had imagined. So we embark on a series of emails that will change everything.
Here I have to apologize for the round robin emails - but actually saying the words "I have The Thing" was not even happening in my head and I could not in a million years have ACTUALLY said to to any of you. So I copped out, in a major way. And I'm sorry (but would still do it the same way again...)
One of the things we specified early on is No Sympathy and that carries on. Humor is the coping mechanism we have always had in the dark times - J can always make me laugh however bad things are - and my friends are the same. You are allowed to say "it's crap" because it is - and also "your boobs were too small anyway" because I love you - but NOT "thinking of you as you go through this journey..." because that stuff goes on the kind of card in the nastier type of hallmark shop; also because it makes me cry.
While I'm there - and I paraphrase a lot here from Lisa Lynch (who I think I may have a bit of a crush on)....here are a few more banned phrases....
1). You've got quite a journey ahead. No. A journey implies a lovely trip, perhaps with a beach and a cocktail at the other end, loads of laughs and new stamps in your passport when you get home. The Thing is a disease, which I am really lucky they can treat, but it's horrible and painful and is ruining my life and how I planned it to turn out.
2) Stay Strong. Oh, there's an idea I hadn't thought of. D'you know, I was thinking about whether to stay strong or just chuck the towel in - I just couldn't decide which side I was going to come down on....but that tips it....
3) You'll get through this. Will I? I wish the doctors knew that.
OK! Now you are panicking about what the hell you CAN actually say. Forget the manual - forget the fact that you feel a bit awkward and just say anything (apart from Stay Strong etc etc) in the same way that you would if you saw me in Sainsburys. Actually all we need to know is that you care - and so many of you (old and new friends) have shown that in the most amazing way we are bowled over. Just don't think you've done it, now, OK - we are going to need you all more than ever over the next few months and we miss you. a lot.
As zen-like and serene as ever, J xx
A surreal fortnight.
The details of the next few days are a bit fuzzy - I suspect that the next parts will be shorter and less detailed. I also suspect my mind of taking over and protecting me from the true horror that was those few days - and bless the few people we "told" at that stage (you know who you are) who listened to me sobbing and told me that this was the worst it would EVER be, and that as soon as we knew what we were dealing with, it would be so much better.
And guess what - so far, they are right. The feeling of falling off a cliff, no, way worse, falling out of a space shuttle perhaps - as you see your perfect life unravelling out of control - is not something I would wish on my worst enemy. But it passes.
So to the PET scan - a lovely radioactive sugar cocktail which then shows up any abnormal metabolic activity (aka The Thing) in an MRI type scan. We then got the first good news in a while - it was clear apart form my left boob, where there were two areas of suspicious activity.....
One thing you learn very quickly when dealing with The Thing is that you have to take in The Most Enormous amount of information and process it, ask intelligent questions, make decisions that are, oh, really quite important (one boob or two, anyone) incredibly quickly. It's a bit like an immersion course in molecular science, or black holes, or biochemistry - to degree level - that takes place over a period of two weeks. And if you think you know something, and don't ask, you turn out not to know it at all and make incorrect assumptions......
Anyway, I have totally lost the plot now - but yes, there were these two areas of activity - one of which was in some kind of lymph BUT apparently not the lymph which is a worry..... But which meant that mastectomy was the sensible option so that they could be sure of getting it all out. That'll be one boob then. Lovely Prof T said that he would reconstruct at the same time - and he'd make me a beautiful new boob - and we go away and decide on dates.
God - how are we going to tell the children?
To cut a long story short, we tell the kids all they needed to know at this point (Mummy has a lump - the surgeons are going to cut it out - er thats about it....). They are singularly uninterested (brilliant) and so much more impressed by my new iPad.
Surgery date is booked for 17th March (Happy St Patricks day) and off we jolly well go.....
The weird thing is that I feel totally well and totally healthy. I've lost weight over the last 6 months and feel at peace with my body for the first time ever, tennis has started to tone up my flabby bits, my hair is under control (to a degree - J would probably disagree) and a decent colour (ditto). How can I be ill? I think this is the source of the surreal feeling - this hideous situation can't possibly be happening to us - The Thing? Me? Look at me! You've got to be kidding right?
Right. Yea.
As zen-like and serene as ever, J xx
And guess what - so far, they are right. The feeling of falling off a cliff, no, way worse, falling out of a space shuttle perhaps - as you see your perfect life unravelling out of control - is not something I would wish on my worst enemy. But it passes.
So to the PET scan - a lovely radioactive sugar cocktail which then shows up any abnormal metabolic activity (aka The Thing) in an MRI type scan. We then got the first good news in a while - it was clear apart form my left boob, where there were two areas of suspicious activity.....
One thing you learn very quickly when dealing with The Thing is that you have to take in The Most Enormous amount of information and process it, ask intelligent questions, make decisions that are, oh, really quite important (one boob or two, anyone) incredibly quickly. It's a bit like an immersion course in molecular science, or black holes, or biochemistry - to degree level - that takes place over a period of two weeks. And if you think you know something, and don't ask, you turn out not to know it at all and make incorrect assumptions......
Anyway, I have totally lost the plot now - but yes, there were these two areas of activity - one of which was in some kind of lymph BUT apparently not the lymph which is a worry..... But which meant that mastectomy was the sensible option so that they could be sure of getting it all out. That'll be one boob then. Lovely Prof T said that he would reconstruct at the same time - and he'd make me a beautiful new boob - and we go away and decide on dates.
God - how are we going to tell the children?
To cut a long story short, we tell the kids all they needed to know at this point (Mummy has a lump - the surgeons are going to cut it out - er thats about it....). They are singularly uninterested (brilliant) and so much more impressed by my new iPad.
Surgery date is booked for 17th March (Happy St Patricks day) and off we jolly well go.....
The weird thing is that I feel totally well and totally healthy. I've lost weight over the last 6 months and feel at peace with my body for the first time ever, tennis has started to tone up my flabby bits, my hair is under control (to a degree - J would probably disagree) and a decent colour (ditto). How can I be ill? I think this is the source of the surreal feeling - this hideous situation can't possibly be happening to us - The Thing? Me? Look at me! You've got to be kidding right?
Right. Yea.
As zen-like and serene as ever, J xx
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