So excited about our trip. Not in the least serene OR zen-like. Loads of love, Jo xx
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
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