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
Friday 29 April 2011
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
Diagnosis to Dr Crippen in 30 more seconds....
Cue sunshine, humidity, tennis lessons, rugby practice - a regular weekend in Singapore. Except for The Thing who keeps just butting into my mind however much I try to keep it out.
Then Prof T's Efficient Nurse calls and says he'd like to see me on Monday. I immediately decide they've got the results and that they are bad. I also immediately pretend not to come to that conclusion, and say bravely that of course they won't have the results yet - they need to see me either way and she's sensibly making an appointment. J does the same.
7th March 2011 - we both go and see Prof T and he opens with a kind smile and "I'm so glad J came with you today......". Drum roll.........The Thing has entered the building...... It is (he hopes) probably unaggressive - something to do with the way it floats in the jar - details are VERY fuzzy at this stage - but definately malignant. He draws a picture of a boob and draws some lumps on it. Then he talks through mastectomy vs lumpectomy - one of which has to happen in the next few weeks. What? My boobs? The only bit of my body I actually like? Then he says there will need to be chemotherapy but we will probably avoid radio if we go for the full mastectomy. And now we should go away and think about how much of my lovely left boob we want to cut off.....
Ooh but before that, we need to go and see Dr Crippen on the 12th floor and he will see me back the following day for a PET scan to check it hasn't spread to my bones, liver, ovaries etc. Christ, I didn't even know that was a possibility........
Time for a serious headspin. Think Reese Witherspoon in Poltergeist. With less vomiting. From what I remember, we were both too shocked at this point for tears. Oh no, I remember now, sitting in the waiting room, holding hands, with tears running down my face, thinking that everyone will know we've just had bad news.......and trying to hold it in. OK so I'm still very British, alright? And I still can't master that Demi Moore "wet face" look.
So straight up to Dr Crippens office where he immediately goes through, in the nth level of detail, every side effect and possible outcome of chemo and hormone treatment - including but not limited to death, hysterectomy, more tumours, disfigurement, bloating and more types of death. Oh and hair loss, with new hair coming back thicker, curlier and blacker - so more like pubes than ever. Great.
We really loved that meeting and I definitely cried a lot during it.
Then home, blessed home.
Has it really only been 10 days?
As zen-like and serene as ever, J xx
Then Prof T's Efficient Nurse calls and says he'd like to see me on Monday. I immediately decide they've got the results and that they are bad. I also immediately pretend not to come to that conclusion, and say bravely that of course they won't have the results yet - they need to see me either way and she's sensibly making an appointment. J does the same.
7th March 2011 - we both go and see Prof T and he opens with a kind smile and "I'm so glad J came with you today......". Drum roll.........The Thing has entered the building...... It is (he hopes) probably unaggressive - something to do with the way it floats in the jar - details are VERY fuzzy at this stage - but definately malignant. He draws a picture of a boob and draws some lumps on it. Then he talks through mastectomy vs lumpectomy - one of which has to happen in the next few weeks. What? My boobs? The only bit of my body I actually like? Then he says there will need to be chemotherapy but we will probably avoid radio if we go for the full mastectomy. And now we should go away and think about how much of my lovely left boob we want to cut off.....
Ooh but before that, we need to go and see Dr Crippen on the 12th floor and he will see me back the following day for a PET scan to check it hasn't spread to my bones, liver, ovaries etc. Christ, I didn't even know that was a possibility........
Time for a serious headspin. Think Reese Witherspoon in Poltergeist. With less vomiting. From what I remember, we were both too shocked at this point for tears. Oh no, I remember now, sitting in the waiting room, holding hands, with tears running down my face, thinking that everyone will know we've just had bad news.......and trying to hold it in. OK so I'm still very British, alright? And I still can't master that Demi Moore "wet face" look.
So straight up to Dr Crippens office where he immediately goes through, in the nth level of detail, every side effect and possible outcome of chemo and hormone treatment - including but not limited to death, hysterectomy, more tumours, disfigurement, bloating and more types of death. Oh and hair loss, with new hair coming back thicker, curlier and blacker - so more like pubes than ever. Great.
We really loved that meeting and I definitely cried a lot during it.
Then home, blessed home.
Has it really only been 10 days?
As zen-like and serene as ever, J xx
From lump to diagnosis in 30 seconds.......
OK - this is a high speed run through of what's going on, and where we are at. Just to get everyone up to speed.
Hold onto your seats, it's going to be a bumpy ride......
20th Feb 2011 - found lump in left boob. Assumed (everything is always OK in my life) that it was nothing. Asked a few people who said probably a cyst - wait til your period - it's bound to disappear.
28th Feb 2011 - hmmmm - hasn't disappeared. Still very relaxed about it - it hurts, it doesn't feel like a pea or a bean or a golf ball (more like a swollen muscle) so surely just a cyst, but went to see GP anyway. He's sweet and calm and sure it's nothing (my age, my health, no family history etc etc) but just to be sure he'd like me to have a mammogram and an ultrasound. He asks me when my last mammogram was, and is amazed to hear I have never had one. Feel as though I haven't washed behind my ears or something.....
Am so sure this is nothing I don't even mention to J that I have a second appointment.
1st March 2011 - mammogram and ultrasound. Oh shit - a suspicious looking mass. Sudden interest from GP, and urgent appointment with Breast Surgeon (Breast Surgeon? WTF?) booked for that afternoon. Damn - had to cancel a lunch date but hey, thought it better to be sure rather than worrying unnecessarily over the weekend (I know, in hindsight, this is the point I should have woken up. In my defense, everyone around me still in "it's probably nothing" mode, so I was pissed off to be missing a jolly lunch....).
Cue appointment with breast surgeon Prof T. Prof T is a kindly yet totally urbane breast specialist who is also a plastic surgeon - not a bad combo if you need that kind of thing, but of course that didn't apply to me - he was just going to tell me it's all ok - what a nice chap.....
Lovely Prof T says that there are several cysts in my right tit, but they are nothing to worry about. However, in the left one is a very small lump, but which has suspicious margins (I haven't heard that combination of words since fourth form, when I used to write notes about the teachers in my margins....) so he wants to do a biopsy immediately. Again, he says, let's do it straight away to stop me from worrying over the weekend.
I immediately and suddenly wake up, smell the coffee and start to worry. He thinks I've got cancer. This is real, its not just me being a hypochondriac, he really really thinks I might have cancer. And I start to sniff, in what I like to think of as an elegant, Demi Moore kind of way, but have never been able to carry off.
10 mins of panic time in which to text the happy news to poor J while they prepare the room and then I'm suddenly behind the curtain with my boobs out. Something that looks (and later feels) much like an apple corer being poked into my boob to grab a lump of tissue and pull it out. A quick plaster and a handshake and it's all over - results in a few days.
J takes me home and we drive in a kind of shocked silence. I think we did. J is wonderful, as shocked as I am but totally there for me to do and react however I want to. My mind is in complete, Tourettes style overdrive (Shit! Cancer! Fuck!) but it seems to be happening to someone else.....
And of course, in reality, nothing as horrible as cancer (from now on referred to as The Thing - with apologies to Lisa Lynch - it's not a "Voldemort" thing - but more that cancer has so many preconceptions which I want to move away from) could possibly ever happen in my perfect life. Could it?
As serene and zen-like as ever, J xxs
Hold onto your seats, it's going to be a bumpy ride......
20th Feb 2011 - found lump in left boob. Assumed (everything is always OK in my life) that it was nothing. Asked a few people who said probably a cyst - wait til your period - it's bound to disappear.
28th Feb 2011 - hmmmm - hasn't disappeared. Still very relaxed about it - it hurts, it doesn't feel like a pea or a bean or a golf ball (more like a swollen muscle) so surely just a cyst, but went to see GP anyway. He's sweet and calm and sure it's nothing (my age, my health, no family history etc etc) but just to be sure he'd like me to have a mammogram and an ultrasound. He asks me when my last mammogram was, and is amazed to hear I have never had one. Feel as though I haven't washed behind my ears or something.....
Am so sure this is nothing I don't even mention to J that I have a second appointment.
1st March 2011 - mammogram and ultrasound. Oh shit - a suspicious looking mass. Sudden interest from GP, and urgent appointment with Breast Surgeon (Breast Surgeon? WTF?) booked for that afternoon. Damn - had to cancel a lunch date but hey, thought it better to be sure rather than worrying unnecessarily over the weekend (I know, in hindsight, this is the point I should have woken up. In my defense, everyone around me still in "it's probably nothing" mode, so I was pissed off to be missing a jolly lunch....).
Cue appointment with breast surgeon Prof T. Prof T is a kindly yet totally urbane breast specialist who is also a plastic surgeon - not a bad combo if you need that kind of thing, but of course that didn't apply to me - he was just going to tell me it's all ok - what a nice chap.....
Lovely Prof T says that there are several cysts in my right tit, but they are nothing to worry about. However, in the left one is a very small lump, but which has suspicious margins (I haven't heard that combination of words since fourth form, when I used to write notes about the teachers in my margins....) so he wants to do a biopsy immediately. Again, he says, let's do it straight away to stop me from worrying over the weekend.
I immediately and suddenly wake up, smell the coffee and start to worry. He thinks I've got cancer. This is real, its not just me being a hypochondriac, he really really thinks I might have cancer. And I start to sniff, in what I like to think of as an elegant, Demi Moore kind of way, but have never been able to carry off.
10 mins of panic time in which to text the happy news to poor J while they prepare the room and then I'm suddenly behind the curtain with my boobs out. Something that looks (and later feels) much like an apple corer being poked into my boob to grab a lump of tissue and pull it out. A quick plaster and a handshake and it's all over - results in a few days.
J takes me home and we drive in a kind of shocked silence. I think we did. J is wonderful, as shocked as I am but totally there for me to do and react however I want to. My mind is in complete, Tourettes style overdrive (Shit! Cancer! Fuck!) but it seems to be happening to someone else.....
And of course, in reality, nothing as horrible as cancer (from now on referred to as The Thing - with apologies to Lisa Lynch - it's not a "Voldemort" thing - but more that cancer has so many preconceptions which I want to move away from) could possibly ever happen in my perfect life. Could it?
As serene and zen-like as ever, J xxs
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