The children have gone to Shropshire for a week and I am bereft. They have taken both Nintendo DS lite consoles with them. I have been forced to send off to Amazon for two point and click pc games to entertain me now that I will not have the joy of getting Super Mario to World 4 or lowering my brain age below 35. I have considered buying my own set - but as the pre christmas rush on stock has added £50 to their price, the sheer extravagance of it is too much even for me.
Now that the chemo drugs are working their way out of my system I am starting to remember what it feels like to be normal - but suffered a severe setback this weekend after agreeing to spend half of it in Ikea buying Luc a new wardrobe...Hoping not to go back ever again, we somehow came back with not one but two enormous cupboards which have transformed his room into something resembling the Pax catalogue. What were we thinking?
Having moved all of his stuff (and there is a lot of it) into Emily's room, I now realise that the rest of the week will be spent trying to filter and chuck, rather than enjoying plenty of r&r as I had imagined. The other problem is that while the giant wardrobes are almost finished (thanks to the efforts of Francois, Mark A, a couple of screwdrivers and a lot of swearing), there were unfortunately no shelves in stock to go in them so I can't even start putting things away. Why or why does Ikea exist if not to torture us?
Perhaps its a good thing there is no Nintendo here after all...
Monday, December 31, 2007
Saturday, December 29, 2007
Aint no mountain high enough
My cousin James (of no previous climbing experience) has decided to risk life and limb and climb one of the highest and most unforgiving mountains in the world - Aconcagua in Argentina. He will be doing this in aid of one of my favourite charities, the Breast Cancer Haven, which you will know has provided me with invaluable support, information and help over these last months - and I have many more sessions planned after my treatment. I can think of no better recipient as currently there are only two Haven's in the UK, with a third planned for Leeds next year. It costs £1000 to put one woman through the programme but we are not asked to pay a penny for access to wonderful therapists, nurses and counsellors. It is a real life line for hundreds, if not thousands of women, but as it depends entirely on charitable donations and receives no official funding, every penny raised is put to immediate use and the effect is felt immediately.
James has been busting a gut even over Xmas, training day in and day out by walking for 8 hours at a time carrying 20kg rucksack on his back - as you will see from the pic on his website. He is aiming to raise £10,000 in total but any sum, however large or small, would be very gratefully received.....
James has been busting a gut even over Xmas, training day in and day out by walking for 8 hours at a time carrying 20kg rucksack on his back - as you will see from the pic on his website. He is aiming to raise £10,000 in total but any sum, however large or small, would be very gratefully received.....
To sponsor James and support the Breast Cancer Haven, please click on the link below
http://www.justgiving.com/jamesglasson
All donations are secure and sent electronically to Breast Cancer Haven. If you are a UK taxpayer, Justgiving will automatically reclaim 28% Gift Aid on your behalf, so your donation is worth even more. Please join us in supporting Breast Cancer Haven and a fabulous cause.
http://www.justgiving.com/jamesglasson
All donations are secure and sent electronically to Breast Cancer Haven. If you are a UK taxpayer, Justgiving will automatically reclaim 28% Gift Aid on your behalf, so your donation is worth even more. Please join us in supporting Breast Cancer Haven and a fabulous cause.
Happy New Year and GOOD LUCK JAMES!!!!
Friday, December 28, 2007
Happy Christmas
Just as those terrified soldiers in the first world war trenches found the inspiration to carve little works of art out of wood while the world was falling apart around them - so I have found that in the midst of my personal battle, this Christmas has turned out to be one of great peace and joy.
Perhaps a little melodramatic in terms of analogy - but letting go of all expectations has meant that I have appreciated every minute in a way I haven't before and after a slightly shaky start I found that I felt very glad to be me and exactly where I am, despite everything.
On Saturday night I put on my hair and a sparkly frock for Nick and Pippa's party and managed to transform myself into something resembling my old self. The au pair did an enormous double take when she saw me coming down the stairs and kept looking at me incredulously while muttering things like 'Incroyable' and 'c'est magnifique!'. I remain eternally grateful to the Look Good Feel Better crew for that wonderful session where I learnt to colour myself in - it felt really good to be wearing something other than my cosy Gap joggers and a floppy top.
I spent a thoroughly enjoyable evening trying to sing Xmas carols over those who had been at the Arsenal victory match against Tottenham that same afternoon - you know who you are!!! - and chatting to lots of people I know well and I couple I don't know at all - which was wonderfully liberating as they had no idea that everything they were looking at was fake and the conversation did not hinge around my health and wellbeing. I even forgot about it for a while which is always a relief. In true cinderella style I left before midnight and changed back into a slug.
My poor parents arrived on Sunday laden with food after reading my last blog and evidently prepared for a siege - and Francois took both kids to Harrods for essentials such as foie gras and macaroons from La Duree.
Mass on Xmas Eve was so beautiful and I only cried once which I thought was quite impressive really. The wobble came on the way out as I watched everyone making their way home to their families and I was overcome with jealousy and self pity that they were all going home to a cancer free Christmas and I was not - but after a stern talking to from myself and my very sensible husband, I pulled myself together and had that much anticipated glass of champagne along with some incredibly good smoked salmon and a little slice of foie gras - and the moment was gone.
My sister and I both share the ridiculous habit of waking up hours before the children on Christmas day and waiting for them to get up - so I was watching TV and drinking tea from about 6am when I heard them stir at around 8.30. I had to charge back to bed so they wouldn't suspect it was me eating the mince pie and the carrot. Such a baby...
They were, of course, utterly and completely spoilt - more so this year than usual - largely due to my inept internet shopping which went into chair leg mode as I kept forgetting what I'd got and then trying to even up presents so one didn't have more than the other. They loved everything and Luc kept running around declaring that he 'loved his life' - how easily his affections can be bought!
I cooked probably the simplest Xmas lunch I have ever made but one of the most delicious - - and my galley slaves obediently did all the clearing up while I had a two hour sleep in the afternoon and the kids watched a DVD. The glass of wine at lunchtime completely finished me off after these months of abstinence.
On Boxing Day, Francois' sister, her husband, her three grown up kids, and the wife of the eldest, plus her parents arrived so we had 14 for lunch. Instead of panicking and running round trying to make sure everything was perfect I did little more than to put the leftovers on the table accompanied by a couple of salads and some super simple puddings I'd made at the weekend. Everyone was on good form, no one fell out, no plates were thrown, no adult burst into tears and apart from getting locked into Clissold Park and having to climb over the fence to get out, the whole day went without a hitch.
Francois is pleased that we have not a shred of turkey left and only one slice of ham remains.
This Christmas has taught me that living in the moment is far more worthwhile than dwelling on a past I cannot change or a future that hasn't happened.
Perhaps a little melodramatic in terms of analogy - but letting go of all expectations has meant that I have appreciated every minute in a way I haven't before and after a slightly shaky start I found that I felt very glad to be me and exactly where I am, despite everything.
On Saturday night I put on my hair and a sparkly frock for Nick and Pippa's party and managed to transform myself into something resembling my old self. The au pair did an enormous double take when she saw me coming down the stairs and kept looking at me incredulously while muttering things like 'Incroyable' and 'c'est magnifique!'. I remain eternally grateful to the Look Good Feel Better crew for that wonderful session where I learnt to colour myself in - it felt really good to be wearing something other than my cosy Gap joggers and a floppy top.
I spent a thoroughly enjoyable evening trying to sing Xmas carols over those who had been at the Arsenal victory match against Tottenham that same afternoon - you know who you are!!! - and chatting to lots of people I know well and I couple I don't know at all - which was wonderfully liberating as they had no idea that everything they were looking at was fake and the conversation did not hinge around my health and wellbeing. I even forgot about it for a while which is always a relief. In true cinderella style I left before midnight and changed back into a slug.
My poor parents arrived on Sunday laden with food after reading my last blog and evidently prepared for a siege - and Francois took both kids to Harrods for essentials such as foie gras and macaroons from La Duree.
Mass on Xmas Eve was so beautiful and I only cried once which I thought was quite impressive really. The wobble came on the way out as I watched everyone making their way home to their families and I was overcome with jealousy and self pity that they were all going home to a cancer free Christmas and I was not - but after a stern talking to from myself and my very sensible husband, I pulled myself together and had that much anticipated glass of champagne along with some incredibly good smoked salmon and a little slice of foie gras - and the moment was gone.
My sister and I both share the ridiculous habit of waking up hours before the children on Christmas day and waiting for them to get up - so I was watching TV and drinking tea from about 6am when I heard them stir at around 8.30. I had to charge back to bed so they wouldn't suspect it was me eating the mince pie and the carrot. Such a baby...
They were, of course, utterly and completely spoilt - more so this year than usual - largely due to my inept internet shopping which went into chair leg mode as I kept forgetting what I'd got and then trying to even up presents so one didn't have more than the other. They loved everything and Luc kept running around declaring that he 'loved his life' - how easily his affections can be bought!
I cooked probably the simplest Xmas lunch I have ever made but one of the most delicious - - and my galley slaves obediently did all the clearing up while I had a two hour sleep in the afternoon and the kids watched a DVD. The glass of wine at lunchtime completely finished me off after these months of abstinence.
On Boxing Day, Francois' sister, her husband, her three grown up kids, and the wife of the eldest, plus her parents arrived so we had 14 for lunch. Instead of panicking and running round trying to make sure everything was perfect I did little more than to put the leftovers on the table accompanied by a couple of salads and some super simple puddings I'd made at the weekend. Everyone was on good form, no one fell out, no plates were thrown, no adult burst into tears and apart from getting locked into Clissold Park and having to climb over the fence to get out, the whole day went without a hitch.
Francois is pleased that we have not a shred of turkey left and only one slice of ham remains.
This Christmas has taught me that living in the moment is far more worthwhile than dwelling on a past I cannot change or a future that hasn't happened.
Friday, December 21, 2007
Tis the season to be jolly
My sense of time has abandoned me. The other day I wrote July 07 on a cheque - and it occurred to me that that is the moment when my clock stopped. And yet here I am looking at another Christmas tree and handing out Vitamin C. If the doctor is right, I had breast cancer last Christmas and the one before that but those were normal Christmases where my biggest worry was whether I'd get it all done in time. This year I know that it doesn't really matter. Christmas will happen anyway - but knowing now what I didn't know then changes the shape of it.
Just as I start to emerge from the fog and the cold and various other ailments too revolting to relate, I find myself nursing a boy who stuck his Nintendo pen in his ear and a husband who has collapsed in a heap with the flu after a gruelling few weeks. Even the au pair is ill. I have made no Xmas pudding, no Xmas Cake and haven't been near a supermarket in weeks. Luckily parents are arriving on Sunday with a food parcel or we may well end up eating more of the pasta from the bottomless 5kg bag I mistakenly bought on the internet.
My loathing of supermarkets and general inability to get all the way round the big Sainsbury's is turning me into a whizz at storecupboard cookery and the children have learned not to comment on sardine pasta with black olives or tinned pears with walnuts. They are positively thrilled with my Fridge dregs curry or tuna 'surprise' and if nothing else this is turning them into even more adventurous eaters - though Emily says she will never eat brocolli again and Luc won't touch a frozen pea.
Francois is moaning as usual about having Turkey for Christmas dinner - saying how boring it is and how we'll have to eat it for a week - which of course in my view just adds to its attraction.
A strange thing happened the other day. I was in Woolworth's and saw someone I knew. She pretended she hadn't seen me and as I approached she turned the other way. I hesitated for a minute, wondering whether I should just bite the bullet and say hello. She obviously felt incredibly awkward and didn't know what to say to me and my instinct to put her at her ease suddenly felt as if it would waste more energy than I could afford to spend. I wonder whether she would have done the same if I had a more acceptable illness or operation - and I wonder whether I might have done the same if I found myself in her position.
In fact I'm no better at handling these things either really. Walking around Stoke Newington poses continual problems as I know so many people here to say hello to - but if I don't want to get to the 'how are you?' part I have to develop avoidance strategies. Sometimes it's because I really don't feel I know them well enough to explain why I am wearing a flowery headscarf in December and sometimes it's because it seems so unfair to tell them the truth and watch them struggle to find a response.
It's a lesson in vulnerability on so many levels. I think the worst thing is knowing that people feel sorry for me - seeing the pity in their eyes makes me feel so useless - and caterpults me into upbeat overdrive assuring them I am fine - assuring myself I am fine. And of course I know this is unreasonable of me - that I would do exactly the same - but somehow it serves to accentuate the great divide - the one in which I am on the other side.
But as fluff starts to appear on top of my head (hurrah!!) and the nausea subsides (hurrah hurrah!) I realise that I will soon have no time to dwell on these things - and about bloody time too.
In any event - I will definitely be raising that glass of Champagne I've been on about for 6 months to you and wishing all my fantastic friends and family a very merry Christmas and a happy and healthy new year. I couldn't have got through 2007 without you. Thank you.
Just as I start to emerge from the fog and the cold and various other ailments too revolting to relate, I find myself nursing a boy who stuck his Nintendo pen in his ear and a husband who has collapsed in a heap with the flu after a gruelling few weeks. Even the au pair is ill. I have made no Xmas pudding, no Xmas Cake and haven't been near a supermarket in weeks. Luckily parents are arriving on Sunday with a food parcel or we may well end up eating more of the pasta from the bottomless 5kg bag I mistakenly bought on the internet.
My loathing of supermarkets and general inability to get all the way round the big Sainsbury's is turning me into a whizz at storecupboard cookery and the children have learned not to comment on sardine pasta with black olives or tinned pears with walnuts. They are positively thrilled with my Fridge dregs curry or tuna 'surprise' and if nothing else this is turning them into even more adventurous eaters - though Emily says she will never eat brocolli again and Luc won't touch a frozen pea.
Francois is moaning as usual about having Turkey for Christmas dinner - saying how boring it is and how we'll have to eat it for a week - which of course in my view just adds to its attraction.
A strange thing happened the other day. I was in Woolworth's and saw someone I knew. She pretended she hadn't seen me and as I approached she turned the other way. I hesitated for a minute, wondering whether I should just bite the bullet and say hello. She obviously felt incredibly awkward and didn't know what to say to me and my instinct to put her at her ease suddenly felt as if it would waste more energy than I could afford to spend. I wonder whether she would have done the same if I had a more acceptable illness or operation - and I wonder whether I might have done the same if I found myself in her position.
In fact I'm no better at handling these things either really. Walking around Stoke Newington poses continual problems as I know so many people here to say hello to - but if I don't want to get to the 'how are you?' part I have to develop avoidance strategies. Sometimes it's because I really don't feel I know them well enough to explain why I am wearing a flowery headscarf in December and sometimes it's because it seems so unfair to tell them the truth and watch them struggle to find a response.
It's a lesson in vulnerability on so many levels. I think the worst thing is knowing that people feel sorry for me - seeing the pity in their eyes makes me feel so useless - and caterpults me into upbeat overdrive assuring them I am fine - assuring myself I am fine. And of course I know this is unreasonable of me - that I would do exactly the same - but somehow it serves to accentuate the great divide - the one in which I am on the other side.
But as fluff starts to appear on top of my head (hurrah!!) and the nausea subsides (hurrah hurrah!) I realise that I will soon have no time to dwell on these things - and about bloody time too.
In any event - I will definitely be raising that glass of Champagne I've been on about for 6 months to you and wishing all my fantastic friends and family a very merry Christmas and a happy and healthy new year. I couldn't have got through 2007 without you. Thank you.
Tuesday, December 18, 2007
Gunner heaven
After yesterday, I if you cut Luc in half you would find red and white stripes. Fantastic time watching the players train before meeting the whole of the first team. He now has an autograph book filled with their signatures and two disposable cameras full of photos - although I suspect most of them will turn out to be of Gunnersaurus or the floor. He was thrilled that Fabregast (spelling ??) asked him how old he was and assured me that 'Theo is really good looking.' My boy - on first name terms with Arsenal players. Francois gutted that he didn't speak to any of the Frenchies but his nerves got the better of him. Maybe next time.....
Monday, December 17, 2007
Best Laid Plans
I've been busy as anything getting ready for Xmas - taking Emily shopping and both kids to Wagamama and the cinema - not to mention wrapping up (almost) everything in time for op tomorrow - which has now been cancelled due to my bad cold! Provisional date now 8th Jan...
The road to uncertainty continues...but I am philosophical. The panic of last week has subsided and I am reassured that waiting another 2 or 3 weeks will not change my prognosis and that my surgeon will be fitter and more rested after his Xmas break...
Luc completely chuffed to have won an invite to the Arsenal Junior Gunners Xmas party today - had to drop him off at 10 - and will pick him up at 5 - where he will apparently watch the first team train and then get to meet them all and get their autographs. He was up and dressed in his specially decorated t-shirt at dawn, Arsenal back pack filled with disposable cameras, pens and his precious membership card. After queuing for 50 minutes in the freezing cold (I was early) he ran in without a backwards glance while I ran back to a parking ticket on the car....
Emily happy with her new pink mobile phone which matches her new pink braces - and have secretly given her an extra top up as she spent the first lot in three days. Her birthday (seems like ages ago) went without a hitch and she was thoroughly spoiled. Phone in one hand, Sylvanian Family nursery in the other - the exact divide between childhood and adolescence.
She has made a great group of friends at the new school and at her Xmas concert last week the display of sheer comraderie and enthusiasm was uplifting. Stoke Newington is not school as we know it - but it has a dynamism and joy that I wished I'd had - not to mention a bevvy of beautiful male teachers - the au pair was positively drooling - until Emily told us that the one she had her eye on was actually 'gay - so deal with it' . Needless to say he is top of the popularity list.
Talking of hot teachers, Luc's nativity was absolutely beautiful - only marred by Luc himself - in the front row - once again doing his impression of an escaped lunatic. Why oh why do I have to spend every one of his concerts with my hands over my face. Still the back view of Mr Bobb provided some welcome Xmas cheer - and I noticed I was not alone in this thought.
Luc's piano recital at the Vortex jazz club yesterday was far less embarrassing - I was completely impressed by his enthusiasm and rythmn - his rendition of Jingle Bells accompanied by the guitar and the double bass took as all by surprise - we only hope that next year he may finally learn to play with two hands....
The road to uncertainty continues...but I am philosophical. The panic of last week has subsided and I am reassured that waiting another 2 or 3 weeks will not change my prognosis and that my surgeon will be fitter and more rested after his Xmas break...
Luc completely chuffed to have won an invite to the Arsenal Junior Gunners Xmas party today - had to drop him off at 10 - and will pick him up at 5 - where he will apparently watch the first team train and then get to meet them all and get their autographs. He was up and dressed in his specially decorated t-shirt at dawn, Arsenal back pack filled with disposable cameras, pens and his precious membership card. After queuing for 50 minutes in the freezing cold (I was early) he ran in without a backwards glance while I ran back to a parking ticket on the car....
Emily happy with her new pink mobile phone which matches her new pink braces - and have secretly given her an extra top up as she spent the first lot in three days. Her birthday (seems like ages ago) went without a hitch and she was thoroughly spoiled. Phone in one hand, Sylvanian Family nursery in the other - the exact divide between childhood and adolescence.
She has made a great group of friends at the new school and at her Xmas concert last week the display of sheer comraderie and enthusiasm was uplifting. Stoke Newington is not school as we know it - but it has a dynamism and joy that I wished I'd had - not to mention a bevvy of beautiful male teachers - the au pair was positively drooling - until Emily told us that the one she had her eye on was actually 'gay - so deal with it' . Needless to say he is top of the popularity list.
Talking of hot teachers, Luc's nativity was absolutely beautiful - only marred by Luc himself - in the front row - once again doing his impression of an escaped lunatic. Why oh why do I have to spend every one of his concerts with my hands over my face. Still the back view of Mr Bobb provided some welcome Xmas cheer - and I noticed I was not alone in this thought.
Luc's piano recital at the Vortex jazz club yesterday was far less embarrassing - I was completely impressed by his enthusiasm and rythmn - his rendition of Jingle Bells accompanied by the guitar and the double bass took as all by surprise - we only hope that next year he may finally learn to play with two hands....
Tuesday, December 11, 2007
Slice and Dice
Well after a weekend holed up with the kids I ventured out today for (as you will now not be surprised to hear) a trip to the doctor's, an ultrasound and a flit around John Lewis. The ultrasound failed to turn up anything of interest as the mysterious 3mm lump is too small to see except with an mri - and the consultant was adamant that he knew all about it but wanted to wait and see what the second mri showed up as they have a tendency to show up everything - even when it is not relevant. In any event - my options are now limited and I have agreed to wait 3 months for another mri, and to assess the situation then. In the meantime, he assures me I am not in any immediate danger. Could have done with not having this hanging over me - but uncertainty is now a feature of my life so I am not on unfamiliar territory.
The good news is that I am to have surgery next Tuesday 18th December to remove what's left of my cancer, along with a sentinel node biopsy to ascertain which lymph nodes drain the tumour - which will then be removed. If all is clear that will be the end of that - but if tumour cells are found I will need a second operation under the arm to remove more lymph nodes. I could have had this at the same time - but it is a much bigger operation and carries a risk of lymphodoema which is a pain in the butt (well the arm to be precise) - so I opted to take it in stages in case it proves not to be necessary. The surgery will also mean I will get the full pathology of this little bugger - but to receive it I have to go to Wimbledon at 2.30pm on Friday afternoon 21st December!!!! I can only imagine the horror of my 26 hour round trip on the Friday before Xmas - probably won't get back till xmas eve - and all that 3 days after surgery. Oh well - I did insist on being sliced and diced before xmas so can't complain....
I already feel as if a weight has been lifted and that I will at least have the worst behind me before the festivities. And it appears that that is not the only thing to be lifted as the consultant assured me that he will reconstruct me so well that I'll end up with a beautiful left boob - better perhaps than the current model - and that he is happy to do the same to the right at some later date. Eat your heart out Pammie..
So just a few clear days now to finish my Xmas shopping and start the wrapping so I'll have nothing to do except eat turkey and drink Champagne....
The good news is that I am to have surgery next Tuesday 18th December to remove what's left of my cancer, along with a sentinel node biopsy to ascertain which lymph nodes drain the tumour - which will then be removed. If all is clear that will be the end of that - but if tumour cells are found I will need a second operation under the arm to remove more lymph nodes. I could have had this at the same time - but it is a much bigger operation and carries a risk of lymphodoema which is a pain in the butt (well the arm to be precise) - so I opted to take it in stages in case it proves not to be necessary. The surgery will also mean I will get the full pathology of this little bugger - but to receive it I have to go to Wimbledon at 2.30pm on Friday afternoon 21st December!!!! I can only imagine the horror of my 26 hour round trip on the Friday before Xmas - probably won't get back till xmas eve - and all that 3 days after surgery. Oh well - I did insist on being sliced and diced before xmas so can't complain....
I already feel as if a weight has been lifted and that I will at least have the worst behind me before the festivities. And it appears that that is not the only thing to be lifted as the consultant assured me that he will reconstruct me so well that I'll end up with a beautiful left boob - better perhaps than the current model - and that he is happy to do the same to the right at some later date. Eat your heart out Pammie..
So just a few clear days now to finish my Xmas shopping and start the wrapping so I'll have nothing to do except eat turkey and drink Champagne....
Friday, December 7, 2007
I should be so Lucky
Difficult to write anything at the moment after another rollercoaster week.
Monday and Tuesday were blissful at The Haven in Fulham. Thanks so much Rita and Nuala for their excellent chauffeuring/chatting service - it added to my enjoyment enormously! More about that another day.
Wednesday started brilliantly when I discovered over coffee that my lovely friends had an ulterior motive in inviting me to the cafe and handed me a sheet of paper covered with fab pictures of Kylie in Showgirl costume, on the back of which was written that I am to receive 2 tickets to her sellout concert at the 02 centre next July - exactly one year after my diagnosis. It was one of the few moments in my life when I can say I was speechless...as those around that table will confirm. I am already practising my disco diva dance moves... So a big thank you to the Kylie Consortium...
Wednesday finished well too with a trip to the ballet with Emily and Pippa and her daughter Alice to see Jewels at the ROH - very sparkly with divine costumes. In the theatre I can forget myself for a while - it offers a tangible release from the everyday pressure - and it was great to see Emily enjoying herself so much. Have resolved to do more of that.
On Thursday an ultrasound scan revealed that my tumour has not shrunk at all since the last scan (three chemos ago) but after my initial disappointment I decided to focus on the fact that at least it is half its original size. Not the result I was hoping for but perhaps not the end of the world.
On Friday I went for my MRI - this time listening to the three tenors singing 'My Way'. I have told them that they really have to improve their CD collection. My chat with the radiologist started well when he confirmed that my first MRI showed my tumour at 25mm x 25mm (smaller than I thought) and the fact that it is now only 12mm x 14mm is overall good news. He then said 'And the 8mm lump in the other breast is now only 3mm'. I don't know who was more suprised - me - because this is the first I've heard of another lump - or him that I didn't know. Apparently he wrote in his report to my consultant back in August that he recommended an ultrasound to determine what kind of lump it is. So here I am again - left in the dark until Tuesday when said consultant can explain to me what the hell is going on. I seriously suspect that he failed to read that bit of the report - but I will reserve judgement until then.
Anyway I don't suppose this news would have changed anything about my treatment - it will just be more difficult now to identify what kind of lump this new one is - although the fact that it appears to have responded to chemotherapy does not, in my view, bode well. Lop 'em both off is my current feeling but perhaps I will soften in time.
Monday and Tuesday were blissful at The Haven in Fulham. Thanks so much Rita and Nuala for their excellent chauffeuring/chatting service - it added to my enjoyment enormously! More about that another day.
Wednesday started brilliantly when I discovered over coffee that my lovely friends had an ulterior motive in inviting me to the cafe and handed me a sheet of paper covered with fab pictures of Kylie in Showgirl costume, on the back of which was written that I am to receive 2 tickets to her sellout concert at the 02 centre next July - exactly one year after my diagnosis. It was one of the few moments in my life when I can say I was speechless...as those around that table will confirm. I am already practising my disco diva dance moves... So a big thank you to the Kylie Consortium...
Wednesday finished well too with a trip to the ballet with Emily and Pippa and her daughter Alice to see Jewels at the ROH - very sparkly with divine costumes. In the theatre I can forget myself for a while - it offers a tangible release from the everyday pressure - and it was great to see Emily enjoying herself so much. Have resolved to do more of that.
On Thursday an ultrasound scan revealed that my tumour has not shrunk at all since the last scan (three chemos ago) but after my initial disappointment I decided to focus on the fact that at least it is half its original size. Not the result I was hoping for but perhaps not the end of the world.
On Friday I went for my MRI - this time listening to the three tenors singing 'My Way'. I have told them that they really have to improve their CD collection. My chat with the radiologist started well when he confirmed that my first MRI showed my tumour at 25mm x 25mm (smaller than I thought) and the fact that it is now only 12mm x 14mm is overall good news. He then said 'And the 8mm lump in the other breast is now only 3mm'. I don't know who was more suprised - me - because this is the first I've heard of another lump - or him that I didn't know. Apparently he wrote in his report to my consultant back in August that he recommended an ultrasound to determine what kind of lump it is. So here I am again - left in the dark until Tuesday when said consultant can explain to me what the hell is going on. I seriously suspect that he failed to read that bit of the report - but I will reserve judgement until then.
Anyway I don't suppose this news would have changed anything about my treatment - it will just be more difficult now to identify what kind of lump this new one is - although the fact that it appears to have responded to chemotherapy does not, in my view, bode well. Lop 'em both off is my current feeling but perhaps I will soften in time.
Wednesday, November 28, 2007
Wipe out
And it started so well....I'd felt pretty well for a good two or three days before chemo six and was on a high from the steroids and the idea it was the last one. Beccy whipped me into town for a little pre chemo John Lewis run (the two now inextricably linked) where I changed the red shedders (again) and opted for the boring beige I should have bought in the first place. Somehow I also ended up with a new duvet, new pillows and new covers which suddenly seemed as essential as breathing. An indication of my bed obsession and wanting to start the next phase of my life in clean sheets. Beccy followed me round cheerfully, as I then scooped up front opening pyjamas and a sports bra....on the recommendation of the helpful assistant when asked what she recommended for post surgery lingerie. 'Cosmetic or Cancer?', she asked and I was for once rather glad to reply 'cancer', the alternative striking me as horribly frivolous...
Chemo itself was as usual - perked up a bit this time by some serious chatting to fellow patients and a few volunteers which filled in the four and a half hour wait for drugs - and continued well when Tamsin came to pick me up and we had a very pleasant lunch in a Thai restaurant and a quick shop in Stoke Newington. It wasn't until Thursday afternoon that the whole thing started to unravel -hence the long silence.
Not much to report except that I have been in bed for nearly a week pretty much unable to do anything except lie flat in silence. The cough is debilitating enough to prevent much moving around - and all forms of entertainment equivalent to having a pneumatic drill in action at the end of the bed. Was hoping to make Joseph last night - tix bought months ago - the last four in the house - to see Lee Mead who we all voted for in the lead role - but had to bow out at the last minute. Luckily the kids had a great time and didn't seem too upset by my absence.
Good chat with fellow sufferer yesterday reassured me that you have to let go of some of these things - it's not the end of the world - also that the last chemo is hell on earth (she wasn't kidding) as there is some sort of accumulative effect going on....I thought I'd feel elated that this was the last one but it's more a sort of gloom at my inability to even get down the stairs. Not to mention the dread of ever having to go through this again.
In any event - things are good enough today for me to have hauled my laptop into bed and to be writing this and answering a few emails so hopefully have turned a corner.
Next week is an endless round of cancer related trips - to the Haven (hopefully) on Monday and Tuesday, then more ultrasounds, mri and dr appointments to ascertain the new position of everything before surgery - which has now been postponed to 18th December which I am relieved about. I need some recovery time - even if it does mean I'll be wobbly over Xmas.
Chemo itself was as usual - perked up a bit this time by some serious chatting to fellow patients and a few volunteers which filled in the four and a half hour wait for drugs - and continued well when Tamsin came to pick me up and we had a very pleasant lunch in a Thai restaurant and a quick shop in Stoke Newington. It wasn't until Thursday afternoon that the whole thing started to unravel -hence the long silence.
Not much to report except that I have been in bed for nearly a week pretty much unable to do anything except lie flat in silence. The cough is debilitating enough to prevent much moving around - and all forms of entertainment equivalent to having a pneumatic drill in action at the end of the bed. Was hoping to make Joseph last night - tix bought months ago - the last four in the house - to see Lee Mead who we all voted for in the lead role - but had to bow out at the last minute. Luckily the kids had a great time and didn't seem too upset by my absence.
Good chat with fellow sufferer yesterday reassured me that you have to let go of some of these things - it's not the end of the world - also that the last chemo is hell on earth (she wasn't kidding) as there is some sort of accumulative effect going on....I thought I'd feel elated that this was the last one but it's more a sort of gloom at my inability to even get down the stairs. Not to mention the dread of ever having to go through this again.
In any event - things are good enough today for me to have hauled my laptop into bed and to be writing this and answering a few emails so hopefully have turned a corner.
Next week is an endless round of cancer related trips - to the Haven (hopefully) on Monday and Tuesday, then more ultrasounds, mri and dr appointments to ascertain the new position of everything before surgery - which has now been postponed to 18th December which I am relieved about. I need some recovery time - even if it does mean I'll be wobbly over Xmas.
Tuesday, November 20, 2007
End of chemo
I can't really believe it but tomorrow I will be having my LAST chemo. I am so completely excited to get this over with that I don't really care how I feel afterwards - I'm sure it will not be pleasant - but each day into it I will be able to say it's 'the last 3rd/4th/5th etc day after chemo' with no nukes looming. Fantastic - feel quite liberated. Surgery scheduled for 11th December - so just crossing fingers that I will be in good enough health for it to go ahead - a few concerns re the ever present chest infection - but I am praying for some relief this time around. Between now and the surgery I have to succumb to another round of mri scans, ultrasounds and meetings with the docs to get an accurate update of the state of my tumour - and I've also put in a couple of retreat days at The Haven - as well as Emily's birthday and a trip to the ballet....I shall probably spend the rest of the time in bed - plus ca change...I am getting a little behind in my scaffolding know-how...
At the last MRI scan (lying prostate, face down, arms aloft for 35 minutes, wearing enormous headphones) they insisted on playing a medley of depressing soft rock songs at top volume - 'When you are gone' 'Blood is thicker than Water' 'Nothing will ever be the Same' etc which I pointed out at the time was perhaps not the best choice of soundtrack - but it fell on deaf ears -mainly mine.
Strangely, as it is with these things, I have been much, much better over the last couple of days - so have had about 4 good days since last chemo - and am thankful for small mercies. It meant I was able to escort Luc and a few of his friends to the Build a Bear Factory in Covent Garden for his 7th birthday (something I wasn't sure I'd be able to do) and also to suffer the humiliation of a small child shouting out at the lift in Covent Garden tube 'Luc's Mum is wearing a wig!' at the top of their little voice to the amused look of 50 complete strangers. Francois felt so sorry for me he bought me a pair of luxury socks (he knows the way to a girl's heart) but it was just another reminder of how much I want some hair - and how close I am now to getting some.....
I have commented here on my eyebrows - or lack of - but to clarify things - I do have a skinny little line that ends about a centimetre too soon - and look as if I should be dancing round my handbag - but Emily put it very well when she said, 'Don't worry Mummy, it just looks as if they've been plucked...............by a blind person.'
So tomorrow I will say goodbye to my lovely chemo nurses and all the other staff at the Clinic - whose lives have brushed against mine over these last months. One step of the journey behind me - and not a moment too soon.
At the last MRI scan (lying prostate, face down, arms aloft for 35 minutes, wearing enormous headphones) they insisted on playing a medley of depressing soft rock songs at top volume - 'When you are gone' 'Blood is thicker than Water' 'Nothing will ever be the Same' etc which I pointed out at the time was perhaps not the best choice of soundtrack - but it fell on deaf ears -mainly mine.
Strangely, as it is with these things, I have been much, much better over the last couple of days - so have had about 4 good days since last chemo - and am thankful for small mercies. It meant I was able to escort Luc and a few of his friends to the Build a Bear Factory in Covent Garden for his 7th birthday (something I wasn't sure I'd be able to do) and also to suffer the humiliation of a small child shouting out at the lift in Covent Garden tube 'Luc's Mum is wearing a wig!' at the top of their little voice to the amused look of 50 complete strangers. Francois felt so sorry for me he bought me a pair of luxury socks (he knows the way to a girl's heart) but it was just another reminder of how much I want some hair - and how close I am now to getting some.....
I have commented here on my eyebrows - or lack of - but to clarify things - I do have a skinny little line that ends about a centimetre too soon - and look as if I should be dancing round my handbag - but Emily put it very well when she said, 'Don't worry Mummy, it just looks as if they've been plucked...............by a blind person.'
So tomorrow I will say goodbye to my lovely chemo nurses and all the other staff at the Clinic - whose lives have brushed against mine over these last months. One step of the journey behind me - and not a moment too soon.
Friday, November 16, 2007
Cosmetically challenged
The week has ended much better than it begun. An addition to my list of surreal experiences since July has to be the Look Good Feel Better (LGFB) session I attended at the hospital - for women with cancer. Berenice from the Clinique counter at JL and Shirley from Clarins assisted Janet from New Zealand in showing a motley crew of women with one thing in common, how to use cleanser, toner and moisturiser - and how to draw realistic eyebrows. I will not come out of this experience without new skills. I fell over at several hurdles (trying to use the eyebrow pencil as an eyeliner for one), and Berenice was forced to grapple the little make-up brush out of my hand when she saw my attempts at applying the dark brown eyeshadow over the lighter base - but on the whole it was quite an uplifting experience. 'I'm mary, and I have breast cancer, 2 children and I moisturise daily', 'I'm Carol, I live in Cirencester, have cancer of the bile duct and enjoy bright coloured eyeshadow', and so on.
Inevitably the conversation turned to heads - bald or otherwise - but as Janet tried desperately to persuade those of us who were wigged up to let it all hang out 'I've noticed that when women are brave enough to remove their weg, we can really see their tremendous bone structure,' I clung resolutely on to mine. I am not ready to go there. My new friend (opposite me, 2 kids, twinkly eyes and gsh) whipped hers off before we'd even sat down - but I just couldn't bring myself to take the plunge.
I have been wondering about that ever since. Is it because I am in some way ashamed of having cancer - or is it because I am fundamentally extremely vain? It's difficult to analyse how I feel about my Duncan Goodhew look - in the mirror in the privacy of my own bathroom I think I look ok - but the idea of sharing this with anyone other than my nearest and dearest fills me with horror. There is something so vulnerable about being bald. I can only say that for me it feels a little like popping out to get the bread and realising that you forgot to put your top on. Despite having spent a number of months when I was 10 walking with a limp in order to attract attention, I simply cannot bear the idea of that kind of attention now that I am 44.
Anyway LGFB had many redeeming features - not least the fact that we were given an enormous goodie bag full of products. Having resisted the urge to leave them all in their smart packaging and recycle them for Xmas I now know how to use green cream (excessive redness) and how to draw attention away from my lack of facial hair. And if I get stuck, as I was leaving, Berenice whispered in my ear that she'd be happy to give me a bit of 'extra help' next time I pop into John Lewis. The shame.
Inevitably the conversation turned to heads - bald or otherwise - but as Janet tried desperately to persuade those of us who were wigged up to let it all hang out 'I've noticed that when women are brave enough to remove their weg, we can really see their tremendous bone structure,' I clung resolutely on to mine. I am not ready to go there. My new friend (opposite me, 2 kids, twinkly eyes and gsh) whipped hers off before we'd even sat down - but I just couldn't bring myself to take the plunge.
I have been wondering about that ever since. Is it because I am in some way ashamed of having cancer - or is it because I am fundamentally extremely vain? It's difficult to analyse how I feel about my Duncan Goodhew look - in the mirror in the privacy of my own bathroom I think I look ok - but the idea of sharing this with anyone other than my nearest and dearest fills me with horror. There is something so vulnerable about being bald. I can only say that for me it feels a little like popping out to get the bread and realising that you forgot to put your top on. Despite having spent a number of months when I was 10 walking with a limp in order to attract attention, I simply cannot bear the idea of that kind of attention now that I am 44.
Anyway LGFB had many redeeming features - not least the fact that we were given an enormous goodie bag full of products. Having resisted the urge to leave them all in their smart packaging and recycle them for Xmas I now know how to use green cream (excessive redness) and how to draw attention away from my lack of facial hair. And if I get stuck, as I was leaving, Berenice whispered in my ear that she'd be happy to give me a bit of 'extra help' next time I pop into John Lewis. The shame.
Tuesday, November 13, 2007
Is anybody out there?
My only link to the outside world seems to be my fleeting contributions to this blog and regular communication with all my Cancer Buddies from CBN. I am living in a cyberworld....It's hard to keep a sense of proportion about what is important and what is not. Little things take on a ridiculous level of importance while the big things are consecrated to a compartment marked Later at the back of my brain.
Currently smarting about delicate household relationships which seem impossible to manage from a largely horizontal position. Since this whole thing has started, Luc has been the most loving and affectionate of children - his anxiety about what has happened to his mother is palpable and real. He is gentle and helpful and kind with me almost all of the time - as if his input alone will make the difference between me getting well or staying sick. He is, however, less accommodating with other people on whom he lets out some of his anger and frustration. I believe that the only way to deal with this is by understanding and affection but this is not an easy message to get across.
Emily has turned a corner recently after receiving a glowing report from all her teachers at school - and various merit awards and certificates for good behaviour, punctuality etc. While she remains fragile with regard to me, and sensitive to the insensitivity of some of her peers, her self esteem is soaring academically which is all for the good. I feel incredibly protective of them both at the moment - I want to swoop them up and let nobody hurt them - and thinking about this occupies far too much of my time.
Despite working 14 hours a day including weekends, Francois remains my absolute hero throughout all of this as he never lets his stress of frustration out on me, and remains a source of positive comfort and strength. My mother too has shown the depth of her resilience under pressure and overall tolerance, patience and love - as have all of my family. And of course, though I haven't said it for a while, the amazing generosity of everyone who continues to text me, call me, visit me, drive me and feed me remain a source of incredible comfort. I'm sure the novelty must be wearing off and yet I am not forgotten.
Testing times which are not without profound value. If I'd never been ill - I would never have known how far I could fall on the kindness of others and how many people I will keep in my life forever.
Anyway - my underlying health is really taking a hit at the moment as the chemo slowly destroys all my living healthy cells which are taking longer and longer to bounce back, but with only one more to go - there is an end in sight. I am comforted by thoughts of a large glass of Champagne at Christmas and a chemo free New year....not to mention my mounting pile of brochures for French Spas!
If anyone is still reading this outpouring of a deranged housewife, I apologise for recent sense of humour failure - I'm assured it will come back with my eyebrows.
Currently smarting about delicate household relationships which seem impossible to manage from a largely horizontal position. Since this whole thing has started, Luc has been the most loving and affectionate of children - his anxiety about what has happened to his mother is palpable and real. He is gentle and helpful and kind with me almost all of the time - as if his input alone will make the difference between me getting well or staying sick. He is, however, less accommodating with other people on whom he lets out some of his anger and frustration. I believe that the only way to deal with this is by understanding and affection but this is not an easy message to get across.
Emily has turned a corner recently after receiving a glowing report from all her teachers at school - and various merit awards and certificates for good behaviour, punctuality etc. While she remains fragile with regard to me, and sensitive to the insensitivity of some of her peers, her self esteem is soaring academically which is all for the good. I feel incredibly protective of them both at the moment - I want to swoop them up and let nobody hurt them - and thinking about this occupies far too much of my time.
Despite working 14 hours a day including weekends, Francois remains my absolute hero throughout all of this as he never lets his stress of frustration out on me, and remains a source of positive comfort and strength. My mother too has shown the depth of her resilience under pressure and overall tolerance, patience and love - as have all of my family. And of course, though I haven't said it for a while, the amazing generosity of everyone who continues to text me, call me, visit me, drive me and feed me remain a source of incredible comfort. I'm sure the novelty must be wearing off and yet I am not forgotten.
Testing times which are not without profound value. If I'd never been ill - I would never have known how far I could fall on the kindness of others and how many people I will keep in my life forever.
Anyway - my underlying health is really taking a hit at the moment as the chemo slowly destroys all my living healthy cells which are taking longer and longer to bounce back, but with only one more to go - there is an end in sight. I am comforted by thoughts of a large glass of Champagne at Christmas and a chemo free New year....not to mention my mounting pile of brochures for French Spas!
If anyone is still reading this outpouring of a deranged housewife, I apologise for recent sense of humour failure - I'm assured it will come back with my eyebrows.
Monday, November 12, 2007
Better today
Amazing what a good night's sleep can do. Morale in camp chemo is somewhat restored after taking a couple of superdrugs from my ever expanding medicine cabinet which knocked me out for a straight 7 hours. Woke up feeling like a newer woman. Back on antibiotics but no temperature so no need to go back 'inside' which is great. Sun is shining and I have eaten a chocolate brioche from the Spence along with a real coffee with milk - the soya stuff does not agree with me. Things are looking up.
Sunday, November 11, 2007
Out of fuel
This bloody chemo thing is getting me down. Having had high hopes of number 5, it has unfortunately reactivated the chest infection. Back to gp tomorrow after nights and days of coughing incessently. Have barely made it out of bed since thurs so my saintly mother is staying on for a few more days. I am desperately hoping that I do not have to go back to hospital - it is Luc's birthday on Thursday and I had so many plans for this week. I also have to get better for the next and final dose on the 21st. I had no idea when I started this journey what the word chemotherapy actually meant. I can't believe my vaguely callous and flippant attitude to friends and family who had been through it. I feel a bit like Earl (in My Name is) mentally crossing off previous wrongs and making them right by living through this myself. My mother in law who had breast cancer 35 years ago and was never really on good form afterwards got short shrift from me - I thought breast cancer was a step up from flu - but it is not. She must be up there now with her very best 'told you so' face and she would be dead right. I am so sick of being sick, so tired of being tired and so completely frustrated with being such a huge burden on everyone.
Other than that I managed to miss Luc's class assembly on Friday and phoned his head teacher to say that I had not had a note about it - I spent half the day in tears - and then found a fluorescent orange note the size of The Telegraph pasted into his reading record - which I had not consulted all week. What a complete loser I have become. Sorry Clare.
Having said all that - I was glued to the tv screen last night watching the Kylie Show - what a superb advert for chemotherapy she is. It gives me hope that the joy I will feel when this is over will in some way compensate for the hideousness of now. Despite pausing the TV every time she lifted up her arm to look for scars, I saw nothing - she looks incredible and radiates happiness and energy. She has a new single out called No More Rain which she says is 'very personal to her' and has obviously come out of her experience - which I intend to buy and listen to on repeat until this passes.
Other than that I managed to miss Luc's class assembly on Friday and phoned his head teacher to say that I had not had a note about it - I spent half the day in tears - and then found a fluorescent orange note the size of The Telegraph pasted into his reading record - which I had not consulted all week. What a complete loser I have become. Sorry Clare.
Having said all that - I was glued to the tv screen last night watching the Kylie Show - what a superb advert for chemotherapy she is. It gives me hope that the joy I will feel when this is over will in some way compensate for the hideousness of now. Despite pausing the TV every time she lifted up her arm to look for scars, I saw nothing - she looks incredible and radiates happiness and energy. She has a new single out called No More Rain which she says is 'very personal to her' and has obviously come out of her experience - which I intend to buy and listen to on repeat until this passes.
Friday, November 9, 2007
Rocket fuel
I feel like a rocket in a computer game. One of those that has a fuel tank that you can see depleting with every hit, until suddenly there is no more fuel and you crash and burn. Two lives left...
Yesterday I managed to get Emily's braces sorted (purple, painful), take a quick trip to Woolworths Angel for Operation Xmas Child shoebox stuff and last minute shopping for Luc's birthday next week, take her for some much needed retail therapy at Gap (New jeans and a long scarf for me) have lunch at Wagamama (dentist said only soup and noodles for lunch) and home. Where I crashed and burned. Have not really moved out of bed since 4pm yesterday.
Thank god for the lap top - particularly in view of last night's tv lineup - Channel 4 showing The Mummy Diaries - five families and a tv shrink look at how to tell the kids you only have a year to live - ITV What's Killing Me - 5 celebrities take genetic tests to see what their risk of dying of cancer is. Is it me or are we living in a world where we are so desensitised that gratification can only be found through the sick glorification of the personal hell of others. I sat sulking on my laptop researching international spa holidays in Mauritius.
Tonight is the Quiz Night at St Joan and I don't know how November came round so fast. I feel as if I have been lying in this bed since August. Well I have really. I am an expert on scaffolding and scaffolders (seen daily through my window as they renovate the flats the back of my house). And there is nothing I do not know about property developing, buying a place in the sun or escaping to the country. And while I never thought it possible, I now understand the rules of Eggheads...eat your heart out quiz night candidates!
Yesterday I managed to get Emily's braces sorted (purple, painful), take a quick trip to Woolworths Angel for Operation Xmas Child shoebox stuff and last minute shopping for Luc's birthday next week, take her for some much needed retail therapy at Gap (New jeans and a long scarf for me) have lunch at Wagamama (dentist said only soup and noodles for lunch) and home. Where I crashed and burned. Have not really moved out of bed since 4pm yesterday.
Thank god for the lap top - particularly in view of last night's tv lineup - Channel 4 showing The Mummy Diaries - five families and a tv shrink look at how to tell the kids you only have a year to live - ITV What's Killing Me - 5 celebrities take genetic tests to see what their risk of dying of cancer is. Is it me or are we living in a world where we are so desensitised that gratification can only be found through the sick glorification of the personal hell of others. I sat sulking on my laptop researching international spa holidays in Mauritius.
Tonight is the Quiz Night at St Joan and I don't know how November came round so fast. I feel as if I have been lying in this bed since August. Well I have really. I am an expert on scaffolding and scaffolders (seen daily through my window as they renovate the flats the back of my house). And there is nothing I do not know about property developing, buying a place in the sun or escaping to the country. And while I never thought it possible, I now understand the rules of Eggheads...eat your heart out quiz night candidates!
Wednesday, November 7, 2007
Five and counting
It's strange how similar this whole thing is to pregnancy and childbirth. Take, for example, the fact that each time I get nuked, I appear to have completely forgotten how awful it is. And this number 5 has been no exception. Since Saturday I have been lying almost immobile in a state of sweating, jittering hell - punctuated by nightmares of the Elm Street kind which blur into a kind of purple haze reality and prevent me from getting any real rest. I know that the worst is over when I manage to get through the night without changing my pillowcase. And that day is today - and not a moment too soon - given the number of real life crises that await my attention.
Apart from the fact that I am now three birthday parties down in buying gifts etc (all Luc's- he will have no friends soon) and that it is his birthday next week (only one present so far and no wrapping or card), and that my Xmas cake is no more than a large bag of dried fruit in the under stairs cupboard - tomorrow I have to take Emily to Angel to have a full set of tram lines fitted top and bottom turning her into a metal mouth for the forseeable future. Given that she is not good at handling pain at the best of times, never mind ongoing discomfort, this prospect is not filling me with joy. Luckily Mum is here as usual to hold my hand through the proceedings - and drive the car as my chemo brain would give the insurance companies something to worry about.
We also have no hot water without using the £400 a minute emersion heater - and getting a plumber out to sort this problem seems like a cruel twist of fate at a time in my life when plumbing comes low on my list of priorities.
Anyway - I intend to fully reactivate myself before the next and last chemo (on 22nd November) and make the most of every day. When so much of your life is so deeply unpleasant, very small things can take on an almost utopian pleasure. Eating a bowl of noodles at Wagamama is high on my list of celestial pleasures - as is walking in sunlight and looking at purple pansies next to red cyclamen - none of these things would have brought quite the deep sense of well-being and satisfaction that they do now - and for this I am truly thankful.
Apart from the fact that I am now three birthday parties down in buying gifts etc (all Luc's- he will have no friends soon) and that it is his birthday next week (only one present so far and no wrapping or card), and that my Xmas cake is no more than a large bag of dried fruit in the under stairs cupboard - tomorrow I have to take Emily to Angel to have a full set of tram lines fitted top and bottom turning her into a metal mouth for the forseeable future. Given that she is not good at handling pain at the best of times, never mind ongoing discomfort, this prospect is not filling me with joy. Luckily Mum is here as usual to hold my hand through the proceedings - and drive the car as my chemo brain would give the insurance companies something to worry about.
We also have no hot water without using the £400 a minute emersion heater - and getting a plumber out to sort this problem seems like a cruel twist of fate at a time in my life when plumbing comes low on my list of priorities.
Anyway - I intend to fully reactivate myself before the next and last chemo (on 22nd November) and make the most of every day. When so much of your life is so deeply unpleasant, very small things can take on an almost utopian pleasure. Eating a bowl of noodles at Wagamama is high on my list of celestial pleasures - as is walking in sunlight and looking at purple pansies next to red cyclamen - none of these things would have brought quite the deep sense of well-being and satisfaction that they do now - and for this I am truly thankful.
Saturday, November 3, 2007
Wet and wild
Fifth chemo done. Can't believe it. After the first one I thought I would die if I had to do another one, never mind six! And here I am - feeling ropey and sick and up more or less since 4am but anxiety levels under control and feeling relatively perky about the fact that the next one of these will be the last. I usually manage ok now until about Monday when the slump sets in - but if I manage to avoid my brush with the stomach cramps and other surprises, I'm hopeful I will get through this one ok.
The great news is that I found one of my embroidery threaders - in my chemo book??? Obvious really - so am now able to sew again - still have no idea where the spare has gone and as John Lewis denied all knowledge of ever having sold such a thing when lovely Helen went into haberdashery yesterday - I will have to guard this one with my life.
Found a better thing to do with my time at 4am than panic. Spent it researching spa holidays on the internet. Have been focussing on yoga retreats until now but they all seem so damn physical - not sure I'll be up to it in the forseeable future. France has some incredible thallasotherapie spas - on the sea front - full of lovely iodine to counteract the effects of radiotherapy and far more r&r based - along with michelin starred dietique fishy cuisine, juice bars and a bit of yoga thrown in. Mmmm perhaps more my style......uncle barclaycard be prepared to take a well deserved battering!
The great news is that I found one of my embroidery threaders - in my chemo book??? Obvious really - so am now able to sew again - still have no idea where the spare has gone and as John Lewis denied all knowledge of ever having sold such a thing when lovely Helen went into haberdashery yesterday - I will have to guard this one with my life.
Found a better thing to do with my time at 4am than panic. Spent it researching spa holidays on the internet. Have been focussing on yoga retreats until now but they all seem so damn physical - not sure I'll be up to it in the forseeable future. France has some incredible thallasotherapie spas - on the sea front - full of lovely iodine to counteract the effects of radiotherapy and far more r&r based - along with michelin starred dietique fishy cuisine, juice bars and a bit of yoga thrown in. Mmmm perhaps more my style......uncle barclaycard be prepared to take a well deserved battering!
Thursday, November 1, 2007
Who am I - who are you?
One of the difficulties in writing a blog is knowing how to pitch it. It occurs to me that there is a blog writing frame of mind that needs to occur at the same time as access to a computer - and the time and energy to write it. I was reading someone else's blog last week - a young, dynamic, successful woman who's abandonment and freedom in her posts made me consider the way that for all her freedom of speech and thought (although no doubt she too would admit to having a degree of self censorship), I am the reverse. I use the blog to provide information and to in some way thank all the people who have proved to be such amazing friends over this difficult time - but I don't really use it to express the rollercoaster reality - and am not sure if this is the place for it. I have to admit here to also writing a secret diary - called The Dark Side - which will never be published here - this fulfills a great deal of my cathartic needs - and keeps me sane in the wee hours.
Anyway - after a long gap - the chemo deadline which looms this morning - number 5 - so penultimate - I thought I had better add something or people would start to think I had fallen off the internet.
Half term was wonderful. A glorious week of sunshine, walks, fresh air and slobbing in front of th telly in Shropshire was the tonic I needed. The kids had a great time and my family did a great job of looking after me. My sister was such a star - taking out the kids so I could watch box office movies and driving me on Friday to an amazing place called The Haven in Hereford. There is also a branch in London that I will be attending for a 2 day workshop and retreat day in early Decmeber. The Haven was set up in 2000 to support women with breast cancer - emotionally, phsyically and pyschologically. They offer everything from highly skilled breast cancer nurses to nutritionists, massage therapists and workshops on everything from relaxation and meditation to tai chi. And it is all completely free. The centres work as a charity and are opening another in Leeds next year. They hope to open 10 around the country over the next few years. It costs £1000 to put each woman through the service - and when I have finished my treatment I intend to raise £1000 for them so that another woman can benefit as much as I am already. It really is the most incredible place and they should be everywhere in the UK so that more women can benefit. I cannot put a value on having access to this kind of help at a time like this and in helping maintain that fighting spirit! So watch this space and feel free to suggest any good fundraising ideas for me next year!!
Anyway - I was so uplifted after my trip to the Hereford branch that I was persuaded to do a little light clothes shopping - yet another comfy cardi to add to my collection - do I ever buy anything else? And a very comfy pair of dark grey cords from the White Stuff which are lovely. Helen and I also had a nice lunch and a quick trip to the cross stitch shop to buy two more teeny weeny canvases. I am hooked and now suffering the frustration of having lost both my embroidery needle threader hooks just before next chemo. So annoying.
I discovered yesterday that I am not going mad - memory loss is a feature of chemotherapy. Bloody hell - I can't afford to lose any more. I go around doing the most ridiculous things - can't remember anything - please forgive me if I have forgotten who you are after this next one.
I bought 2 of those needle threaders - so that I would have a back up and have lost both! No idea where I have put them. Can't believe it. Also managed this week to double book look for the same evening after school to be in two different places at once - within 10 minutes! Francois is doing his nut because I can't retain anything he tells me - ie what time he will be home - does he need feeding etc - so twice he has had no dinner and had to raid the fridge for leftover hummous and halloween chocolate.
Anyway - I am sincerely hoping that the memory will come back along with the hair - but if not, what was your name again?
Anyway - after a long gap - the chemo deadline which looms this morning - number 5 - so penultimate - I thought I had better add something or people would start to think I had fallen off the internet.
Half term was wonderful. A glorious week of sunshine, walks, fresh air and slobbing in front of th telly in Shropshire was the tonic I needed. The kids had a great time and my family did a great job of looking after me. My sister was such a star - taking out the kids so I could watch box office movies and driving me on Friday to an amazing place called The Haven in Hereford. There is also a branch in London that I will be attending for a 2 day workshop and retreat day in early Decmeber. The Haven was set up in 2000 to support women with breast cancer - emotionally, phsyically and pyschologically. They offer everything from highly skilled breast cancer nurses to nutritionists, massage therapists and workshops on everything from relaxation and meditation to tai chi. And it is all completely free. The centres work as a charity and are opening another in Leeds next year. They hope to open 10 around the country over the next few years. It costs £1000 to put each woman through the service - and when I have finished my treatment I intend to raise £1000 for them so that another woman can benefit as much as I am already. It really is the most incredible place and they should be everywhere in the UK so that more women can benefit. I cannot put a value on having access to this kind of help at a time like this and in helping maintain that fighting spirit! So watch this space and feel free to suggest any good fundraising ideas for me next year!!
Anyway - I was so uplifted after my trip to the Hereford branch that I was persuaded to do a little light clothes shopping - yet another comfy cardi to add to my collection - do I ever buy anything else? And a very comfy pair of dark grey cords from the White Stuff which are lovely. Helen and I also had a nice lunch and a quick trip to the cross stitch shop to buy two more teeny weeny canvases. I am hooked and now suffering the frustration of having lost both my embroidery needle threader hooks just before next chemo. So annoying.
I discovered yesterday that I am not going mad - memory loss is a feature of chemotherapy. Bloody hell - I can't afford to lose any more. I go around doing the most ridiculous things - can't remember anything - please forgive me if I have forgotten who you are after this next one.
I bought 2 of those needle threaders - so that I would have a back up and have lost both! No idea where I have put them. Can't believe it. Also managed this week to double book look for the same evening after school to be in two different places at once - within 10 minutes! Francois is doing his nut because I can't retain anything he tells me - ie what time he will be home - does he need feeding etc - so twice he has had no dinner and had to raid the fridge for leftover hummous and halloween chocolate.
Anyway - I am sincerely hoping that the memory will come back along with the hair - but if not, what was your name again?
Tuesday, October 16, 2007
Your life in your hands
Things have really taken a turn for the worse. Not only have I given up dairy - more of that later - but I have replaced it with cross stitch. Some strange urge came over me in haberdashery at JL and I found my way sidling over to the cash desk with a tiny package and a scary number of lavender threads - all of which I later discovered had to be divided into 6 individual strands. This was about the same time I discovered there was no printed picture on the scarily blank white cloth and I actually had to fully concentrate on counting endless identical squares containing druid colour symbols in order to replicate the 'Charming Victorian picture panel'.
But I have to say - it saw me through some bad post chemo hours - the very effort of it all has had a strangely calming effect on my usual frantic state - and I find myself thinking about bringing a halogen light into the bedroom or even moving the furniture to get a better light...Will my life ever be the same again?
Also spent a large part of today reading my new bible - 'Your Life in your Hands' by Professor Jane Plant. A scientist and long term breast cancer survivor - she has conducted a huge amount of seriously compelling evidence showing a link between eating milk, cheese, yoghurt and all things dairy - and the growing incidence of both breast and prostate cancers in western society. I for one am convinced that I will be doing myself a huge favour in forgoing these things - and giving my diet a complete overhaul. I know that I am also forgoing dinner invitations for the rest of my life and that my entire French family will now look at me with even more polite forebearance - but I can live with that.
But I have to say - it saw me through some bad post chemo hours - the very effort of it all has had a strangely calming effect on my usual frantic state - and I find myself thinking about bringing a halogen light into the bedroom or even moving the furniture to get a better light...Will my life ever be the same again?
Also spent a large part of today reading my new bible - 'Your Life in your Hands' by Professor Jane Plant. A scientist and long term breast cancer survivor - she has conducted a huge amount of seriously compelling evidence showing a link between eating milk, cheese, yoghurt and all things dairy - and the growing incidence of both breast and prostate cancers in western society. I for one am convinced that I will be doing myself a huge favour in forgoing these things - and giving my diet a complete overhaul. I know that I am also forgoing dinner invitations for the rest of my life and that my entire French family will now look at me with even more polite forebearance - but I can live with that.
Friday, October 12, 2007
Fourth time lucky?
Back from chemo four and not too bad so far. Have changed some of the medication to hopefully help with sickness and post steroid crashing. Am so full of vitamins, veg juice and green tea that I'm hoping the good guys will fight back. Mum arriving tomorrow and Francois promising to take rare weekend off work but not holding my breath. Had a good chat with the oncologist who assures me I will get a full recap and explanation of exactly what is going on in my body when all the chemos are finished. I think that this is the person I should be talking to for the inside story. Assuming surgery goes ahead on 11th December I will then have a break until after Xmas and then 5 weeks of radiotherapy - every day except Sat and Sun. May have written this before but a bit bleary eyed tonight and can't really remember. Thanks to everyone who has written me emails and new comments on the blog over the last couple of days - it has kept me busy on the laptop for the last few hours - reading and replying - as well as fitting in a bit of birthday and xmas shopping - I can't believe that I have to do 2 birthdays between now and Xmas - as well as two more chemos and an operation - not forgetting Halloween - couldn't have picked a better time!
I am off to Shropshire on Friday am for the half term - cadging lift with my Mum which means I won't have to make the late night drive myself - probably not up to it anyway - back on the Sunday before school starts back again. Really looking forward to a change of scene and plan a trip to the Hereford Breast Cancer Haven as well as some quality time with Emily who is in desperate need. Hope to come back refreshed and ready for the next onslaught.
Thanks also to Beccy and Nuala for picking me up from the hospital today - and buying me a dosser box(?) - a brilliant device for organising the 4000 drugs I have to take at various times of day and for Hayley for coming again yesterday and making me laugh and planning our yoga holiday for next year.....
Still dairy free and actually getting used to the fish tank tea - oncologist said there was a lot of research going on about this at the moment and it is worth trying -
Now starting to flag - next few days may be a bit rough but at least I know what to expect...Luc is lying in bed next to me and has just called me 'wild and sexy'. Aren't boys wonderful...
I am off to Shropshire on Friday am for the half term - cadging lift with my Mum which means I won't have to make the late night drive myself - probably not up to it anyway - back on the Sunday before school starts back again. Really looking forward to a change of scene and plan a trip to the Hereford Breast Cancer Haven as well as some quality time with Emily who is in desperate need. Hope to come back refreshed and ready for the next onslaught.
Thanks also to Beccy and Nuala for picking me up from the hospital today - and buying me a dosser box(?) - a brilliant device for organising the 4000 drugs I have to take at various times of day and for Hayley for coming again yesterday and making me laugh and planning our yoga holiday for next year.....
Still dairy free and actually getting used to the fish tank tea - oncologist said there was a lot of research going on about this at the moment and it is worth trying -
Now starting to flag - next few days may be a bit rough but at least I know what to expect...Luc is lying in bed next to me and has just called me 'wild and sexy'. Aren't boys wonderful...
Thursday, October 11, 2007
Two thirds tomorrow
Just a real quickie before chemo number four tomorrow...
Had a really good day - felt well, got some work done, had reflexology and delicious Otto Lenghi takeaway with lovely friend Kathy and then went to the ballet with Pippa, Claire and Lucy. Fantastic. Forgotten there was a world out there. Will definitely be doing more of that!
Feeling really happy tonight and not at all anxious about tomorrow - will lie around with visions of La Bayadere and its glorious costumes and beautiful choreography floating in my head. Thanks for inviting my Pippa - you are a star.
I'm planning on hitting this one running and hopefully the 47 supplements I am now taking combined with the 94 litres of beetroot juice I have consumed in the last two days and my entirely worthy dairy free lifestyle will have me back in the land of the living in no time...
Watch this space...
Had a really good day - felt well, got some work done, had reflexology and delicious Otto Lenghi takeaway with lovely friend Kathy and then went to the ballet with Pippa, Claire and Lucy. Fantastic. Forgotten there was a world out there. Will definitely be doing more of that!
Feeling really happy tonight and not at all anxious about tomorrow - will lie around with visions of La Bayadere and its glorious costumes and beautiful choreography floating in my head. Thanks for inviting my Pippa - you are a star.
I'm planning on hitting this one running and hopefully the 47 supplements I am now taking combined with the 94 litres of beetroot juice I have consumed in the last two days and my entirely worthy dairy free lifestyle will have me back in the land of the living in no time...
Watch this space...
Tuesday, October 9, 2007
Cancer Bore
I am the absolutely last person on earth I thought would ever say this - but I thought I'd better come clean now rather than have this leak out slowly - or worse - to have to admit this over and over again publicly - but I am now well and truly a member of The Other Side. This week, after much internet blogging and research, I have decided to give up all dairy produce. And worse is to come...I have bought a carton of soya milk. This has led to the inevitable - I can no longer drink tea or coffee as soya milk and Taylors of Harrowgate just do not work.
It's official. I am turning into a Cancer Bore.
But the path to dairy free righteousness has not been easy...
Yesterday
7am Woke up and made cup of 'Especially Rare (expensive) Chinese Green Tea (indistinguishable from drinking directly out of fish tank)
10am Freshly squeezed beetroot, celery and cucumber juice. No I am not joking.
1pm Lunch - had to go to Fresh and Wild as had nothing suitable in house.
(While there stocked up on interesting low fat meat alternatives and more hideously expensive dairy free stuff)
7pm Supper -Quorn mince with wholeweat pasta. Yuck yuck yuck
10pm Delicous cup of Fennel Tea
Today
7am - More fish tank tea. Meusli made with soya milk (yuck yuck yuck) made bearable by addition of a ton of nuts and dried fruit.
11am - Cup of Barley NO CAFF with soya milk - hot, wet and tasteless
1pm - Thank God for John Lewis - very tasty lentil salad with hummous, roast artichokes and tomato soup.
7pm - Chicken curry made without yoghurt - weird.
Clearly I will have to live in John Lewis. I always knew it would come to this.
It's official. I am turning into a Cancer Bore.
But the path to dairy free righteousness has not been easy...
Yesterday
7am Woke up and made cup of 'Especially Rare (expensive) Chinese Green Tea (indistinguishable from drinking directly out of fish tank)
10am Freshly squeezed beetroot, celery and cucumber juice. No I am not joking.
1pm Lunch - had to go to Fresh and Wild as had nothing suitable in house.
(While there stocked up on interesting low fat meat alternatives and more hideously expensive dairy free stuff)
7pm Supper -Quorn mince with wholeweat pasta. Yuck yuck yuck
10pm Delicous cup of Fennel Tea
Today
7am - More fish tank tea. Meusli made with soya milk (yuck yuck yuck) made bearable by addition of a ton of nuts and dried fruit.
11am - Cup of Barley NO CAFF with soya milk - hot, wet and tasteless
1pm - Thank God for John Lewis - very tasty lentil salad with hummous, roast artichokes and tomato soup.
7pm - Chicken curry made without yoghurt - weird.
Clearly I will have to live in John Lewis. I always knew it would come to this.
Not so bad
Feeling very guilty now about my miserable blog but that's the way it is on this side - up and down - but overall more up than down. Heard an excellent Woman's Hour this am about the shock of diagnosis and it summed it all up really - the reality of it comes in waves. Happy denial fuelled by distraction only goes so far. Anyway - two good nights of sleep have done wonders for my energy levels and I fairly shot around JL today - not only changed the red towels - for more red towels - hopefully not shedders - but also managed a bit of Xmas shopping - In October! Un heard of. Paid a visit to the new 'food hall' which is a rather disappointing cross between Waitrose and Selfridges. Rows of ordinary Waitrose food laid out so you can't find it. The only noticeable difference was the posh patisserie counter and the cheese room (a la fromagerie). It was also completely packed with queues everywhere.
Kids meant to do swimming and ballet tonight but both too tired to move. Luc said we were all exhausted, 'because we're tired of you being ill'. Perhaps my bad week is rubbing off on them.
So while technaupair is upstairs skyping her boyfriend on the webcam - we are chilling out and watching Ugly Betty. Much better than swimming....
Kids meant to do swimming and ballet tonight but both too tired to move. Luc said we were all exhausted, 'because we're tired of you being ill'. Perhaps my bad week is rubbing off on them.
So while technaupair is upstairs skyping her boyfriend on the webcam - we are chilling out and watching Ugly Betty. Much better than swimming....
Monday, October 8, 2007
Bad Week
Apologies for long silence - but since Tuesday morale has been low on the Other Side. A nurse told me at the beginning of this that after the third chemo people often felt rubbish - combination of fatigue and the shock of diagnosis. I should have planned a few more 'treats' or to see people as that always helps but just didn't have the energy really. Anyway - forced myself out of the malaise at the weekend and had dinner with kids at Karen and Tim's which was really nice - particularly as France won the rugby - Luc now decided he is in fact half French.
On Sunday we had a walk around Regents Park - beautiful Autumnal day - which was good for morale but rubbish for legs which actually started trembling after about half an hour. Have resolved to walk for about an hour a day whenever I can to get some muscle strength back. Totally pathetic. Tomorrow my walk will be around John Lewis as I sadly have to take my gorgeous red towels back as they are shedding all over the house and the au pair. On Wed I have yoga followed by reflexology so that should also get the circulation going - and then - can you believe it - chemo number 4 on Thursday.
Apart from forcing myself out of the house - the other spirit lifting thing I have done is become a member of a fantastic site called Cancer Buddies Network (Thanks Tam) where you can drone on to people in a similar situation instead of offloading on long suffering spouse.
I will be sending emails instead of Xmas cards this year and donating the money saved to them as they charge nothing and are a complete life saver at times like these. I will also be holding a coffee morning at some point next year as a fundraiser so watch this space! If anyone is looking for a new charity to support this year - please bear this one in mind... You can find them at www.cancerbuddiesnetwork.org.
Other than the big C - life goes on pretty much as normal for everyone else. Emily won't stop banging on about having a mobile phone - and I made the stupid mistake of suggesting she did a straw poll to see how many of her friends actually had one. Yup - all of them. She is, in fact, the only child in her wide circle of friends not to have a bloody phone. What is the point? All I can see looming ahead is years of arguing on it and about it. It's not as if she has to travel anywhere on public transport. Francois was even more vehement on this than me but on Sat night I saw distinct cracks in his resolve when telling Karen and Tim about the 'very nice pink one' he had seen while taking Emily to the orthodontist...
Luc thrilled to receive giant package from Joe H filled with Arsenal goodies - including signed pics of Walcott and Fabregas. I could see him thinking that this cancer thing is not all bad...
Other than that he has stopped tormenting the aupair - and turned down the rantometer. Major emotional blow up last week seems to have cleared the air. It's not easy for me but it's probably harder for everyone else.
Francois busy as ever at work with new boy starting today and wine show looming - but England Vs France this weekend might (or might not) help...
On Sunday we had a walk around Regents Park - beautiful Autumnal day - which was good for morale but rubbish for legs which actually started trembling after about half an hour. Have resolved to walk for about an hour a day whenever I can to get some muscle strength back. Totally pathetic. Tomorrow my walk will be around John Lewis as I sadly have to take my gorgeous red towels back as they are shedding all over the house and the au pair. On Wed I have yoga followed by reflexology so that should also get the circulation going - and then - can you believe it - chemo number 4 on Thursday.
Apart from forcing myself out of the house - the other spirit lifting thing I have done is become a member of a fantastic site called Cancer Buddies Network (Thanks Tam) where you can drone on to people in a similar situation instead of offloading on long suffering spouse.
I will be sending emails instead of Xmas cards this year and donating the money saved to them as they charge nothing and are a complete life saver at times like these. I will also be holding a coffee morning at some point next year as a fundraiser so watch this space! If anyone is looking for a new charity to support this year - please bear this one in mind... You can find them at www.cancerbuddiesnetwork.org.
Other than the big C - life goes on pretty much as normal for everyone else. Emily won't stop banging on about having a mobile phone - and I made the stupid mistake of suggesting she did a straw poll to see how many of her friends actually had one. Yup - all of them. She is, in fact, the only child in her wide circle of friends not to have a bloody phone. What is the point? All I can see looming ahead is years of arguing on it and about it. It's not as if she has to travel anywhere on public transport. Francois was even more vehement on this than me but on Sat night I saw distinct cracks in his resolve when telling Karen and Tim about the 'very nice pink one' he had seen while taking Emily to the orthodontist...
Luc thrilled to receive giant package from Joe H filled with Arsenal goodies - including signed pics of Walcott and Fabregas. I could see him thinking that this cancer thing is not all bad...
Other than that he has stopped tormenting the aupair - and turned down the rantometer. Major emotional blow up last week seems to have cleared the air. It's not easy for me but it's probably harder for everyone else.
Francois busy as ever at work with new boy starting today and wine show looming - but England Vs France this weekend might (or might not) help...
Wednesday, October 3, 2007
Reflexology contact
For those people who have asked me how to get in touch with the fantastic Tony Porter - reflexologist extraordinaire and all round fantastic person - his phone number is 07768 077414 and his email address is artreflex@btinternet.com. He currently practices in Muswell Hill - so pretty easy journey - and you can park outside. Highly recommended for everything - not just what I've got!
Tuesday, October 2, 2007
A cup half full...
Saw consultant today and the plan is to have three more chemotherapies - and surgery provisionally booked for 11th December. Radiotherapy after Xmas will complete the treatment. I will then see him every 3 months for 2 years, every 6 months for 5 years and then once a year forever....
He said that I will not need any continuing drug treatment as my cancer is not hormone receptive - which makes it more aggressive - but one which responds extremely well to chemotherapy. I was momentarily flummoxed, having persuaded myself that I would definitely be on 'miracle' pills for the next 5 years, and took the liberty of asking him some questions - inspired by reading those damn articles / books etc.
He commented that I was obviously a negative person who saw my glass half empty. (And that I should be thrilled that there is a light at the end of the treatment tunnel - rather than questionning my prognosis.)
I am currently fuming about that - but will get over it.
I realise that no one can say whether or not the cancer will come back - and that I have to find a way of living with this uncertainty - but wanting to ask everything you can think of in the 7 minutes you have with the doctor seems to me to be one of the keys in managing a fragile state of mind.
Anyway - fuming aside - the only thing I can do to maximise my chances that it will not come back is to stay healthy, exercise, eat well and maintain a positive mental attitude - so watch out world - and in particular Jane and Taidgh - I might be swimming Lake Geneva after all.....!
He said that I will not need any continuing drug treatment as my cancer is not hormone receptive - which makes it more aggressive - but one which responds extremely well to chemotherapy. I was momentarily flummoxed, having persuaded myself that I would definitely be on 'miracle' pills for the next 5 years, and took the liberty of asking him some questions - inspired by reading those damn articles / books etc.
He commented that I was obviously a negative person who saw my glass half empty. (And that I should be thrilled that there is a light at the end of the treatment tunnel - rather than questionning my prognosis.)
I am currently fuming about that - but will get over it.
I realise that no one can say whether or not the cancer will come back - and that I have to find a way of living with this uncertainty - but wanting to ask everything you can think of in the 7 minutes you have with the doctor seems to me to be one of the keys in managing a fragile state of mind.
Anyway - fuming aside - the only thing I can do to maximise my chances that it will not come back is to stay healthy, exercise, eat well and maintain a positive mental attitude - so watch out world - and in particular Jane and Taidgh - I might be swimming Lake Geneva after all.....!
Sunday, September 30, 2007
Chocolate Awareness Month
Oh no. It had to happen. Breast Cancer Awareness Month.... Having made the mistake of reading just one article which was actually relatively upbeat - I realise I am going to have to shun all forms of media communication for 30 days or go totally insane. I have no idea where to place myself between the 'survivors' selected for make overs in the glossy magazines and the gut wrenching stories of young women fighting a losing battle against this monstrous disease. Statistics are everywhere - 80% of women diagnosed early may soon survive - what do they mean by early - or soon? Two thirds of women currently live for 20 years after breast cancer - (so 33% of women do not - and what happens after 20 years?). 43,000 women are diagnosed every year - but only 3000 of them are under 50.... And these are just the three I read today...
Time for a large bar of Green & Blacks and a DVD I think. And a wide berth of the newsagents...
Time for a large bar of Green & Blacks and a DVD I think. And a wide berth of the newsagents...
Saturday, September 29, 2007
A reading list (part 1)
All views expressed here are entirely mine and should not be replaced with those of your licensed health practitioner...
Books to avoid at all costs
1. What to Eat When you have Cancer by Gillian H Kaplan (MD) Insititute of Madeupsville, VA
(Amazon £17.25 inc supersaver delivery)
Labouring briefly under mistaken impression that now I have got myself into this predicament, changing to soya milk will provide instant cure. After 50 pages of this I realised that I would rather be dead.
2. Feeling Uncertain but facing the fear and saying hello to LIFE by Susan K Happiness (Author of bestselling Stand up and be Counted or you will be SORRY)
(Amazon £27.99 plus express first class next day delivery £12)
Of course you're bloody scared. Much better spend the money on a nice lunch and a lipgloss.
3. Breast Cancer - My Journey by Valerie Smug-Evans
(Fairer Sex books £9.99 including free pink label pin)
I'm really glad I now know how to pin a chemo drip tube to the inside of my specially made tent dress so I can go and enjoy my usual activities with only the occasional hilarious mishap.
4. Triathlon - Why Not?
No comment
BOOK TO READ (Only one entry so far)
What Can I do to help by Deborah Hutton
This is the best and most practical brilliant book about living with cancer and I have used so much of it - from writing a blog to accepting all offers of help from everyone (Sorry guys!). I hadn't realised that she was the mother of a boy called Freddie who was in Emily's class at school for a while - I wish I'd known her.
Books to avoid at all costs
1. What to Eat When you have Cancer by Gillian H Kaplan (MD) Insititute of Madeupsville, VA
(Amazon £17.25 inc supersaver delivery)
Labouring briefly under mistaken impression that now I have got myself into this predicament, changing to soya milk will provide instant cure. After 50 pages of this I realised that I would rather be dead.
2. Feeling Uncertain but facing the fear and saying hello to LIFE by Susan K Happiness (Author of bestselling Stand up and be Counted or you will be SORRY)
(Amazon £27.99 plus express first class next day delivery £12)
Of course you're bloody scared. Much better spend the money on a nice lunch and a lipgloss.
3. Breast Cancer - My Journey by Valerie Smug-Evans
(Fairer Sex books £9.99 including free pink label pin)
I'm really glad I now know how to pin a chemo drip tube to the inside of my specially made tent dress so I can go and enjoy my usual activities with only the occasional hilarious mishap.
4. Triathlon - Why Not?
No comment
BOOK TO READ (Only one entry so far)
What Can I do to help by Deborah Hutton
This is the best and most practical brilliant book about living with cancer and I have used so much of it - from writing a blog to accepting all offers of help from everyone (Sorry guys!). I hadn't realised that she was the mother of a boy called Freddie who was in Emily's class at school for a while - I wish I'd known her.
Friday, September 28, 2007
Ultra ultra sound
Had ultrasound today in exactly the same room I had the one where I found out my 'cyst' was in fact a 2.8cm tumour. Day started badly - pouring rain and my mother (chauffeur) sick as a dog. Francois volunteered to take me instead. He is a great driver and general navigator and all would have been fine had I not got entirely the wrong address in my head for the hospital
and made him screech to a halt at what I was sure was the only available parking meter in central London - which turned out to be quite far from where I thought the hospital was, and a great deal further from where it actually was. I also had not taken into account the fact that 'taking some work to do while he was waiting', meant charging along W1 with a backpack stuffed full of Merlot... and to make matters worse, I developed a sudden and dramatic nosebleed all over his new cream interiors at about Camden Town.
Anyway - we finally made it only 20 minutes late - they were very calm and made me a peppermint tea while waiting. While I nervously fiddled with my 18 layers of clothing and blood stained tissues, Francois filled in the time by holding said Merlot up to the ceiling halogen lights to determine level of sediment - none - while the rest of the waiting room looked on. It's hard to tell what they thought given the general level of anxiety on the faces of everyone in the breast screening unit. The only exception today being a very loud dark haired woman who was boring her ashen faced (me in July) friend with a new car brochure and trying to elicit her opinion on 'jean blue' or 'graphite grey' paintwork and the advantages of having a CD player fitted in the showroom. I was busy counting how many wigs I could see and wondering which of these two women were here for scans when a nurse greeted dark-haired car enthusiast like long-lost friend - 'Oh lovely to see you again, didn't expect to see you so soon, how ARE you bla bla', which momentarily confused me as I was so sure that ashen-faced woman was the cancer candidate - to which she replied, 'Oh, I'm fine now - completely recovered - but you remember my friend who held my hand throughout all my treatment - well now I'm here holding hers....!'
Putting aside the fact that I found her concept of hand-holding a little wide of the mark and the fact that if someone had sat there with me droning on and on about the five point power steering capacity of the Audi 400 while I was waiting to find out whether I had a life-threatening illness, I would have preferred to have one - putting all that aside - I found it astonishing that the nature of this epidemic is such that soon everyone in the waiting room will know each other. I commented on this later to the nurse who said she entirely agreed - it was shocking - and that was why luckily she worked there and could give herself a mammogram every 6 months...
Anyway - finally they called me in - forgot to mention earlier that I must have mistakenly put my middle name on a form some months ago and throughout this entire process every medical interview has started with someone shouting 'Mary-Elizabeth' in a sing song voice across the waiting room. I don't even know where to start to try to correct this so I have not bothered - and truth be known, I find that there is something curiously comforting about the Waltonism.
Anyway - finally called in - same room, same nurses - different doctor in same body (voice, manner, air of breezy confidence) but entirely different experience. Hushed tones replaced by pleasant surprise as he pointed out that at its absolutely widest, widest part, my terrible tumour has been knocked back to a mere 13mm. In other words - less than half the size of its original evil self. Brilliant. He actually said that it was in the absolute maximum shrinkage capacity and is now clearly responding fantastically well to Dr Plowmans chemo cocktail.
I think it's got more to do with lasagnes, casseroles and fish pies....
and made him screech to a halt at what I was sure was the only available parking meter in central London - which turned out to be quite far from where I thought the hospital was, and a great deal further from where it actually was. I also had not taken into account the fact that 'taking some work to do while he was waiting', meant charging along W1 with a backpack stuffed full of Merlot... and to make matters worse, I developed a sudden and dramatic nosebleed all over his new cream interiors at about Camden Town.
Anyway - we finally made it only 20 minutes late - they were very calm and made me a peppermint tea while waiting. While I nervously fiddled with my 18 layers of clothing and blood stained tissues, Francois filled in the time by holding said Merlot up to the ceiling halogen lights to determine level of sediment - none - while the rest of the waiting room looked on. It's hard to tell what they thought given the general level of anxiety on the faces of everyone in the breast screening unit. The only exception today being a very loud dark haired woman who was boring her ashen faced (me in July) friend with a new car brochure and trying to elicit her opinion on 'jean blue' or 'graphite grey' paintwork and the advantages of having a CD player fitted in the showroom. I was busy counting how many wigs I could see and wondering which of these two women were here for scans when a nurse greeted dark-haired car enthusiast like long-lost friend - 'Oh lovely to see you again, didn't expect to see you so soon, how ARE you bla bla', which momentarily confused me as I was so sure that ashen-faced woman was the cancer candidate - to which she replied, 'Oh, I'm fine now - completely recovered - but you remember my friend who held my hand throughout all my treatment - well now I'm here holding hers....!'
Putting aside the fact that I found her concept of hand-holding a little wide of the mark and the fact that if someone had sat there with me droning on and on about the five point power steering capacity of the Audi 400 while I was waiting to find out whether I had a life-threatening illness, I would have preferred to have one - putting all that aside - I found it astonishing that the nature of this epidemic is such that soon everyone in the waiting room will know each other. I commented on this later to the nurse who said she entirely agreed - it was shocking - and that was why luckily she worked there and could give herself a mammogram every 6 months...
Anyway - finally they called me in - forgot to mention earlier that I must have mistakenly put my middle name on a form some months ago and throughout this entire process every medical interview has started with someone shouting 'Mary-Elizabeth' in a sing song voice across the waiting room. I don't even know where to start to try to correct this so I have not bothered - and truth be known, I find that there is something curiously comforting about the Waltonism.
Anyway - finally called in - same room, same nurses - different doctor in same body (voice, manner, air of breezy confidence) but entirely different experience. Hushed tones replaced by pleasant surprise as he pointed out that at its absolutely widest, widest part, my terrible tumour has been knocked back to a mere 13mm. In other words - less than half the size of its original evil self. Brilliant. He actually said that it was in the absolute maximum shrinkage capacity and is now clearly responding fantastically well to Dr Plowmans chemo cocktail.
I think it's got more to do with lasagnes, casseroles and fish pies....
Thursday, September 27, 2007
Third Time Lucky
Just a short one this week as another blast of the super poisons take grip of me - but some good things to mention so just wanted to get it down.
Having refused all company during chemo up until now - my old friend Hayley popped in from her Pilates instructor classes (yes, she does have a flatter stomach than a 12 year old) bearing a bag of super Clarins goodies (thanks also to Dorothy!!!) and her lap top which she'd lugged all the way in from East Sussex....so while Gladys the gorgeous nurse was trying to find a vein to stick her canula in, I gazed at Oxley family photos of their fab summer holiday in Montana. Not only did I not feel a thing, but I now associate the process with breathtaking scenes of pine studded mountains and glistening lakes with a couple of bears and coyotes thrown in. Montana just skittled up to the top of my list of 'places I will visit when I am better' list.
The only worrying point was when they weighed me before giving the drugs. Twice. They couldn't believe I'd actually put on weight since the last time ????? (This is obviously my punishment for that fleeting moment when I thought - Cancer - oh well - at least I'll lose a stone... ) I blame the chemo caterers....
On Sunday it was my 44th birthday - great timing - but the extra steroids they dished out this time meant the whole day was not a total write off - I made it down to lunch and was inundated with cards and presents - the most unexpected of which was from my family who had clubbed together and got me a fantastic white sony laptop!!! So no excuse for not blogging even while bedbound - although I admit to not so far having the energy to actually open it - but plan to get onto that soon...
And finally - and the best bit - while in hospital last week, consultant oncologist/human dynamo Dr Plowman had another grope (I'm sure it's all an excuse...) and declared joyfully that the lump was much smaller and reacting brilliantly to his wonder drugs...he has therefore packed me off for an ultrasound tomorrow to see where we are and a visit to the surgeon next week to see whether surgery may be brought forward. Either way -I'll still need 6 chemo in total - which makes me half way there now. The last time I was in that scan room I had such bad news I can't bear to think about it. I am trying not to drive myself mad wondering what 'smaller' actually means - will have to wait until Tuesday to get the full picture, and stay away from rulers.
Anyway - having expected very little - this birthday week has been full of surprises...
PS. Thanks to everyone who sent me cards and presents etc etc this week - I am starting to feel like Victoria Beckham - and Martina - I don't have your email address or new phone number - the flowers are gorgeous!!!! Thank you....
Having refused all company during chemo up until now - my old friend Hayley popped in from her Pilates instructor classes (yes, she does have a flatter stomach than a 12 year old) bearing a bag of super Clarins goodies (thanks also to Dorothy!!!) and her lap top which she'd lugged all the way in from East Sussex....so while Gladys the gorgeous nurse was trying to find a vein to stick her canula in, I gazed at Oxley family photos of their fab summer holiday in Montana. Not only did I not feel a thing, but I now associate the process with breathtaking scenes of pine studded mountains and glistening lakes with a couple of bears and coyotes thrown in. Montana just skittled up to the top of my list of 'places I will visit when I am better' list.
The only worrying point was when they weighed me before giving the drugs. Twice. They couldn't believe I'd actually put on weight since the last time ????? (This is obviously my punishment for that fleeting moment when I thought - Cancer - oh well - at least I'll lose a stone... ) I blame the chemo caterers....
On Sunday it was my 44th birthday - great timing - but the extra steroids they dished out this time meant the whole day was not a total write off - I made it down to lunch and was inundated with cards and presents - the most unexpected of which was from my family who had clubbed together and got me a fantastic white sony laptop!!! So no excuse for not blogging even while bedbound - although I admit to not so far having the energy to actually open it - but plan to get onto that soon...
And finally - and the best bit - while in hospital last week, consultant oncologist/human dynamo Dr Plowman had another grope (I'm sure it's all an excuse...) and declared joyfully that the lump was much smaller and reacting brilliantly to his wonder drugs...he has therefore packed me off for an ultrasound tomorrow to see where we are and a visit to the surgeon next week to see whether surgery may be brought forward. Either way -I'll still need 6 chemo in total - which makes me half way there now. The last time I was in that scan room I had such bad news I can't bear to think about it. I am trying not to drive myself mad wondering what 'smaller' actually means - will have to wait until Tuesday to get the full picture, and stay away from rulers.
Anyway - having expected very little - this birthday week has been full of surprises...
PS. Thanks to everyone who sent me cards and presents etc etc this week - I am starting to feel like Victoria Beckham - and Martina - I don't have your email address or new phone number - the flowers are gorgeous!!!! Thank you....
Wednesday, September 19, 2007
Pre chemo quickie
Thanks so much to everyone who has left lovely messages, texts etc re tomorrow...I am feeling ok - and had a fabulous reflexology today, made even better when I took out my chequebook and (Saint) Tony said, Happy birthday from Jo and Patrick!!! Thanks guys - it was really, really naughty of you and amazing Jo that you managed to track down Tony like that....and thanks Tony for adding another session next week. It is really kind of you and much appreciated. Reflexology is the only thing I get out of bed for!
After this one I should be half way through chemo and on Oct 2nd I have a review to see what's going on in there and what will happen next - ie how many more chemos, whether the tumour has shrunk (I think it has) and by how much, and whether or what kind of hormone therapy might be relevant. I am looking forward to this as it will give me a few more goal posts in what is currently a bit of a wide open football field...
Sorry I have not been out and about much (PA meetings, playground, dinners, pub etc) - all this will change - and I am thinking about everyone who has sent me messages and cards - I really believe that all the positive energy and prayers people are saying for me is life affirming and will work. (Not to mention the dinners - yippee - the Cancer Caterers are on their way!)
My marvellous mum arrives tomorrow for a few days and hopefully she, Benedicte and Francois will crack open a bottle of wine and have a quiet Mary-free evening before I come back to make their lives a misery. This is the first time the children have been here afterwards so I have warned them about what to expect. Emily said, 'Oh yes, like when you had that throat infection and made us phone Pizza Hut for our dinner,' 'Yes,' I replied. 'Like that, only without the pizza.' We're counting on you Catherine!!!
I also want to thank everyone who is giving Luc and Emily a social life at the moment - they seem barely to be at home and they are loving it. Emily absolutely ADORES her new school and was chosen to be class rep today which she is thrilled about. This slightly overshadows Luc who is nevertheless really enjoying year 2 and leaves happily every morning to boss Benedicte about all the way to Highbury. I wish he could behave a bit more like a French child but have resigned myself to the fact that this is impossible.
Anyway - I will blog again next week with another post and in the meantime am busy planning a huge party for my 45th birthday in 2008 which is filling up all the empty bits of my brain. Am thinking that the venue will have to be the size of a small country to invite everyone who has been so kind, supportive and brilliant during these tough times. All suggestions welcome!
A bientot.
After this one I should be half way through chemo and on Oct 2nd I have a review to see what's going on in there and what will happen next - ie how many more chemos, whether the tumour has shrunk (I think it has) and by how much, and whether or what kind of hormone therapy might be relevant. I am looking forward to this as it will give me a few more goal posts in what is currently a bit of a wide open football field...
Sorry I have not been out and about much (PA meetings, playground, dinners, pub etc) - all this will change - and I am thinking about everyone who has sent me messages and cards - I really believe that all the positive energy and prayers people are saying for me is life affirming and will work. (Not to mention the dinners - yippee - the Cancer Caterers are on their way!)
My marvellous mum arrives tomorrow for a few days and hopefully she, Benedicte and Francois will crack open a bottle of wine and have a quiet Mary-free evening before I come back to make their lives a misery. This is the first time the children have been here afterwards so I have warned them about what to expect. Emily said, 'Oh yes, like when you had that throat infection and made us phone Pizza Hut for our dinner,' 'Yes,' I replied. 'Like that, only without the pizza.' We're counting on you Catherine!!!
I also want to thank everyone who is giving Luc and Emily a social life at the moment - they seem barely to be at home and they are loving it. Emily absolutely ADORES her new school and was chosen to be class rep today which she is thrilled about. This slightly overshadows Luc who is nevertheless really enjoying year 2 and leaves happily every morning to boss Benedicte about all the way to Highbury. I wish he could behave a bit more like a French child but have resigned myself to the fact that this is impossible.
Anyway - I will blog again next week with another post and in the meantime am busy planning a huge party for my 45th birthday in 2008 which is filling up all the empty bits of my brain. Am thinking that the venue will have to be the size of a small country to invite everyone who has been so kind, supportive and brilliant during these tough times. All suggestions welcome!
A bientot.
Monday, September 17, 2007
So much to do, so little time
This week has been full on - no time to blog.
Although it was supposed to be my 'good' week, it has been marred by a return of the chest infection, more antibiotics, and another super low white blood cell count - although I have ploughed through all of that, and managed a trip to Mamma Mia with the kids (dancing in the aisles fun) and the Terracotta Army (interesting but not enough of them). Now feeling a bit exhausted.
Au Pair update
The big event of the week, was, however, the arrival of Benedicte - our new au pair. I have to say (and not just because she may read this) that if we'd written a list of everything an au pair should be and sent off for her mail order, we could not have done better. She is completely lovely, very easy to have around, totally responsible and has a great sense of humour. She also has many cult US TV shows downloaded onto her laptop which she has kindly set up for me to watch in bed!
Benedicte has also endeared herself to me by eating absolutely everything I've put in front of her with gusto, and declared a passion for fish pie and custard (not together). Having never been to England before, she is both pleased and dismayed that she is not going back to France a stone lighter as predicted.
She has also started a rival blog entitled 'My life in London' or 'The British Breakfast'. (I have to come clean here and admit that this is possibly because in my rather sad and controlling way I have written a detailed menu plan and pinned it to the kitchen notice board - thus giving her the impression that I always get up early to prepare freshly squeezed orange juice and scrambled eggs or porridge with stewed apples...)
The children are 'bonding' with her nicely - fighting to sit next to her in the car etc and she is accompanying Emily to guides tonight to see if she can help out. My only worry is whether she will be able to put up with us! We are currently (bar Luc) on our best behaviour which may also account for the fatigue...
Pre Chemo preparations
Chemo is creeping up on me again this Thursday. It's so odd - waiting for something that you know is going to make you feel completely terrible - and yet desperate that it should not be delayed for any reason. Dread vs dread.
I'm also trying to get all sorts of silly things done before becoming incapacitated once more - from sending in my new mortgage application (will they accept me now?) to trying to work out how the hell to plug in my new flat screen TV/DVD player for the bedroom. This is, of course, by far the most pressing problem as I have lined up a selection of intellectually challenging horizontal viewing next week. (Yes, of course I mean Lost, the whole of series one....)
I appear to have the wrong cables as my satellite box is so old - apparently I need ones with something called HDMI (?) which are not included in the box. The instructions appear to have been written in Russian by someone with Aspergers. After a frustrating hour on the internet I was no closer to resolving this problem and narrowly escaped spending vast sums of money on a variety of cables with gold and silver plated ends. Luckily before I could do any more damage to my credit card this week, my father agreed to send me a box of his 'spare cables' (obviously a boy thing), one of which I hope will do the trick.
The other worrying bit of paperwork hanging over me is my passport which expires in about 2 weeks. I rather sensibly got some pictures taken just after my diagnosis, before I had my hair cut short. Unfortunately they make Myra Hindley look like a supermodel. If they are rejected I will face a huge dilemma - Can I have more taken wearing a wig or headscarf or will I be committing myself to a lifetime of problems at immigration? And can I really live with a bald passport photo (What will I do when my hair grows back?)
Other than these obviously challenging tasks, a mound of dull things, including the fact that Luc suddenly has no school uniform that fits him and Emily's leotard resembles a g-string are weighing heavily on my conscience. And there's still my yoga and reflexology and regular juicing to fit in.... The chemo window is closing in fast - but I still hope it happens on Thursday.
Although it was supposed to be my 'good' week, it has been marred by a return of the chest infection, more antibiotics, and another super low white blood cell count - although I have ploughed through all of that, and managed a trip to Mamma Mia with the kids (dancing in the aisles fun) and the Terracotta Army (interesting but not enough of them). Now feeling a bit exhausted.
Au Pair update
The big event of the week, was, however, the arrival of Benedicte - our new au pair. I have to say (and not just because she may read this) that if we'd written a list of everything an au pair should be and sent off for her mail order, we could not have done better. She is completely lovely, very easy to have around, totally responsible and has a great sense of humour. She also has many cult US TV shows downloaded onto her laptop which she has kindly set up for me to watch in bed!
Benedicte has also endeared herself to me by eating absolutely everything I've put in front of her with gusto, and declared a passion for fish pie and custard (not together). Having never been to England before, she is both pleased and dismayed that she is not going back to France a stone lighter as predicted.
She has also started a rival blog entitled 'My life in London' or 'The British Breakfast'. (I have to come clean here and admit that this is possibly because in my rather sad and controlling way I have written a detailed menu plan and pinned it to the kitchen notice board - thus giving her the impression that I always get up early to prepare freshly squeezed orange juice and scrambled eggs or porridge with stewed apples...)
The children are 'bonding' with her nicely - fighting to sit next to her in the car etc and she is accompanying Emily to guides tonight to see if she can help out. My only worry is whether she will be able to put up with us! We are currently (bar Luc) on our best behaviour which may also account for the fatigue...
Pre Chemo preparations
Chemo is creeping up on me again this Thursday. It's so odd - waiting for something that you know is going to make you feel completely terrible - and yet desperate that it should not be delayed for any reason. Dread vs dread.
I'm also trying to get all sorts of silly things done before becoming incapacitated once more - from sending in my new mortgage application (will they accept me now?) to trying to work out how the hell to plug in my new flat screen TV/DVD player for the bedroom. This is, of course, by far the most pressing problem as I have lined up a selection of intellectually challenging horizontal viewing next week. (Yes, of course I mean Lost, the whole of series one....)
I appear to have the wrong cables as my satellite box is so old - apparently I need ones with something called HDMI (?) which are not included in the box. The instructions appear to have been written in Russian by someone with Aspergers. After a frustrating hour on the internet I was no closer to resolving this problem and narrowly escaped spending vast sums of money on a variety of cables with gold and silver plated ends. Luckily before I could do any more damage to my credit card this week, my father agreed to send me a box of his 'spare cables' (obviously a boy thing), one of which I hope will do the trick.
The other worrying bit of paperwork hanging over me is my passport which expires in about 2 weeks. I rather sensibly got some pictures taken just after my diagnosis, before I had my hair cut short. Unfortunately they make Myra Hindley look like a supermodel. If they are rejected I will face a huge dilemma - Can I have more taken wearing a wig or headscarf or will I be committing myself to a lifetime of problems at immigration? And can I really live with a bald passport photo (What will I do when my hair grows back?)
Other than these obviously challenging tasks, a mound of dull things, including the fact that Luc suddenly has no school uniform that fits him and Emily's leotard resembles a g-string are weighing heavily on my conscience. And there's still my yoga and reflexology and regular juicing to fit in.... The chemo window is closing in fast - but I still hope it happens on Thursday.
Monday, September 10, 2007
Therapy
I know that things are getting better after a day like today. Spent a blissful 2 hours in John Lewis Oxford street taking care of some much needed au pair shopping. I'm starting to suspect that having chemo is a bit like being pregnant as I came back with a sack load of bright red towels (asking for trouble) and hideously expensive coat hangers. So now, not only has the au pair got a better room than me, but also better towels and better wardrobe accoutrements. My neighbour Rose commented that she would like to be my au pair.
Anyway - coming back laden with green and white bags gave me a great buzz and I spent the rest of the day washing and folding red towels into identically symmetrical rectangles. I suppose that the good thing about chemo, unlike pregnancy, is that you don't get a baby at the end of it.
Anyway - coming back laden with green and white bags gave me a great buzz and I spent the rest of the day washing and folding red towels into identically symmetrical rectangles. I suppose that the good thing about chemo, unlike pregnancy, is that you don't get a baby at the end of it.
Sunday, September 9, 2007
On Bravery
Spent a really lovely couple of hours last night in Chris and Claire's gorgeous garden. Having spent most of the day in bed, I had to force myself to go out, and don't regret it. The impact of good food and good friends cannot be underestimated for boosting the morale. For at least half and hour at a stretch I completely forgot about the cancer and felt like my old self. A short trip back to the other side. It is so easy to feel like nothing more than a disease on legs and so important for there to be more about me than just that. I don't feel like the same person I was before, but I cannot be entirely defined by this new status. It is still early days and I think I am still struggling with all the new definitions - but just being the me I was before is so relaxing. Wish I'd appreciated it more at the time!
Someone said last night (and not for the first time), that I am being very 'brave'. I have to say that things could not be further from the truth. Brave implies an element of choice, or free will, in how you respond to events such as these. At the beginning, I was consumed by fear, the like of which I hope never to know again. I spent two or three weeks in a sort of daze, going through the motions as if I was someone else. Other people have commented on the fact that you feel as if you are in a film, watching yourself, and I still feel like that from time to time. The brain just cannot comprehend the enormity of the change in circumstances - it takes time to assimilate it all and to reach a level of acceptance that you can live with. I am not brave, but I am more accepting. The 'Why me's?' replaced by more of a 'Why not me?' approach. One in nine women get this disease, and there are many thousands of us out there, and there are many men and women who have far less friendly cancers and a much tougher time.
I am not brave, but I am letting myself go with the flow, and trying to get something good out of each day. Having a wonderful home-cooked meal made with by great friends has been the highlight of every single day this week. It's not just the shopping, and the food, it's the thought, the love and the attention to detail that has been so cheering. These things give me hope and a will to go on to the next day with optimism.
Spending time with the children, listening to them talk about their day is incredibly uplifting, but again, sometimes tinged with sadness as I wish I could take this away from them, and moments of fear have a nasty tendency to creep in.
Late at night, trying to sleep, or at 4 in the morning, the brain sometimes goes into overdrive and I don't feel brave at all. And I would give anything to turn the clock back.
But morning always comes eventually and I wake up pleased to be one step further along the path. If this is a test, a personal challenge, I know I will do everything in my power to come through it a better, stronger person. That's not bravery - it's survival.
And thanks Chris and Claire for a fab evening. My house and garden envy lingers on.....!
Someone said last night (and not for the first time), that I am being very 'brave'. I have to say that things could not be further from the truth. Brave implies an element of choice, or free will, in how you respond to events such as these. At the beginning, I was consumed by fear, the like of which I hope never to know again. I spent two or three weeks in a sort of daze, going through the motions as if I was someone else. Other people have commented on the fact that you feel as if you are in a film, watching yourself, and I still feel like that from time to time. The brain just cannot comprehend the enormity of the change in circumstances - it takes time to assimilate it all and to reach a level of acceptance that you can live with. I am not brave, but I am more accepting. The 'Why me's?' replaced by more of a 'Why not me?' approach. One in nine women get this disease, and there are many thousands of us out there, and there are many men and women who have far less friendly cancers and a much tougher time.
I am not brave, but I am letting myself go with the flow, and trying to get something good out of each day. Having a wonderful home-cooked meal made with by great friends has been the highlight of every single day this week. It's not just the shopping, and the food, it's the thought, the love and the attention to detail that has been so cheering. These things give me hope and a will to go on to the next day with optimism.
Spending time with the children, listening to them talk about their day is incredibly uplifting, but again, sometimes tinged with sadness as I wish I could take this away from them, and moments of fear have a nasty tendency to creep in.
Late at night, trying to sleep, or at 4 in the morning, the brain sometimes goes into overdrive and I don't feel brave at all. And I would give anything to turn the clock back.
But morning always comes eventually and I wake up pleased to be one step further along the path. If this is a test, a personal challenge, I know I will do everything in my power to come through it a better, stronger person. That's not bravery - it's survival.
And thanks Chris and Claire for a fab evening. My house and garden envy lingers on.....!
Saturday, September 8, 2007
Yoga for beginners
Feeling very odd today - probably low white blood cells/blood pressure. Have spent most of the day in bed eating jelly dinosaurs while Francois prepares our spare room for the New Aupair...more of that later...
Anyway, I remembered that my yoga teacher, the lovely soon-to-be-published young novelist and yoga master Ruth Fowler (www.umayoga.org) taught me a strange upside down position to bring blood to the head which involves lying on my back, bum against a wall, feet in the air, balancing on my shoulders. The only problem in this house being the fact that the only clear bits of wall seem to be behind doors, so the relaxing benefits of getting myself into this uncompromising position seems to be counteracted by the fear that one of the children will charge into the room and slam the door on my head. This yoga thing is a hazardous activity. I have had two private lessons now - the aim being to become sufficiently proficient to be able to 'drop in' at the YogaHome 'drop in' which currently fills me with dread. All those limber Stokey mums who probably spend most of their time in full shoulder stands or saluting the dead dog or whatever while I just topple over. Anyway - the second lesson went far better than the first and I definitely felt some sort of benefit from all the stretching and whathaveyou. Having laid in bed almost constantly for the last week it was brilliant to actually move around a bit.
The other scary thing about a class is that it is impossible to carry out all these positions wearing my wig as it was not designed to go upside down - unless you like the sweaty loo brush look - and the miracle scarf gripper, while perfect in inclement weather, is also worse than useless faced with the upside down challenge. Being Gail Porter in my own home is one thing...but in front of aforementioned Stokey Mums with their untamed curls and chic crops is quite another.
I was completely thrilled today when my wedding ring - presumed lost for over 2 years - turned up at the back of a drawer that Francois was scrupulously emptying. I take this as a sign that my luck is swinging the other way - amazing.
The Au Pair
Having resisted the whole idea of a complete stranger living in the house ever since the kids were born (despite Francois' enthusiasm at various times), under the circumstances I felt no option but to succumb. In my view this is not an au pair friendly house - not enough space and the only decent size bedroom will now be hers - but the pros seem to outweigh the cons for once. Despite the fact that my long suffering mother will now have to sleep in Emily's room when she comes, moving Emily into Luc's room which is Emily's worst nightmare.
Also, after years of of listening to my friends horror stories including the one who announced after 10 days at my hard working single mother friend's house that she was pregnant and had 'nowhere to go' and the eastern european with a bizarre eating disorder which involved stashing food under her bed, I wasn't sure I had the mental stamina for one of my own.
Anyway having trawled through several hundred CVs, including Katarina from Moldavia who 'will not do extra hours for extra money, does not iron, but has helped out many summers on her family's pig farm and can milk a cow' (I kid you not) and Birgitta from Sweden who would like to go home during all school holidays and would only consider a house with a cat (I am allergic), we appear to have found the ideal candidate.
Benedicte is French, thus making communication extremely simple, is 23, has a masters degree in Biology and is happy to stay until June. She is also allergic to animals (superb), dyslexic (even better) and an enthusiastic young guide leader (is she making this up???) On the phone she sounds incredibly sweet and jolly and although she has admitted to being terrible at ironing she still won me over by sending me lots of pictures of her making indian headdresses with a group of muddy guides and telling me that she loves English food....She is arriving on Wednesday evening so watch this space...
Anyway, I remembered that my yoga teacher, the lovely soon-to-be-published young novelist and yoga master Ruth Fowler (www.umayoga.org) taught me a strange upside down position to bring blood to the head which involves lying on my back, bum against a wall, feet in the air, balancing on my shoulders. The only problem in this house being the fact that the only clear bits of wall seem to be behind doors, so the relaxing benefits of getting myself into this uncompromising position seems to be counteracted by the fear that one of the children will charge into the room and slam the door on my head. This yoga thing is a hazardous activity. I have had two private lessons now - the aim being to become sufficiently proficient to be able to 'drop in' at the YogaHome 'drop in' which currently fills me with dread. All those limber Stokey mums who probably spend most of their time in full shoulder stands or saluting the dead dog or whatever while I just topple over. Anyway - the second lesson went far better than the first and I definitely felt some sort of benefit from all the stretching and whathaveyou. Having laid in bed almost constantly for the last week it was brilliant to actually move around a bit.
The other scary thing about a class is that it is impossible to carry out all these positions wearing my wig as it was not designed to go upside down - unless you like the sweaty loo brush look - and the miracle scarf gripper, while perfect in inclement weather, is also worse than useless faced with the upside down challenge. Being Gail Porter in my own home is one thing...but in front of aforementioned Stokey Mums with their untamed curls and chic crops is quite another.
I was completely thrilled today when my wedding ring - presumed lost for over 2 years - turned up at the back of a drawer that Francois was scrupulously emptying. I take this as a sign that my luck is swinging the other way - amazing.
The Au Pair
Having resisted the whole idea of a complete stranger living in the house ever since the kids were born (despite Francois' enthusiasm at various times), under the circumstances I felt no option but to succumb. In my view this is not an au pair friendly house - not enough space and the only decent size bedroom will now be hers - but the pros seem to outweigh the cons for once. Despite the fact that my long suffering mother will now have to sleep in Emily's room when she comes, moving Emily into Luc's room which is Emily's worst nightmare.
Also, after years of of listening to my friends horror stories including the one who announced after 10 days at my hard working single mother friend's house that she was pregnant and had 'nowhere to go' and the eastern european with a bizarre eating disorder which involved stashing food under her bed, I wasn't sure I had the mental stamina for one of my own.
Anyway having trawled through several hundred CVs, including Katarina from Moldavia who 'will not do extra hours for extra money, does not iron, but has helped out many summers on her family's pig farm and can milk a cow' (I kid you not) and Birgitta from Sweden who would like to go home during all school holidays and would only consider a house with a cat (I am allergic), we appear to have found the ideal candidate.
Benedicte is French, thus making communication extremely simple, is 23, has a masters degree in Biology and is happy to stay until June. She is also allergic to animals (superb), dyslexic (even better) and an enthusiastic young guide leader (is she making this up???) On the phone she sounds incredibly sweet and jolly and although she has admitted to being terrible at ironing she still won me over by sending me lots of pictures of her making indian headdresses with a group of muddy guides and telling me that she loves English food....She is arriving on Wednesday evening so watch this space...
Friday, September 7, 2007
Hair today...
Since I wrote my opening gambit, two very exciting things have happened.
First, my parcel finally arrived from youarebald.com (http://www.headcovers.com/), the great US site for people with no hair. I spent a happy internet hour a couple of weeks back selecting from a vast array of head wear and trying to decide between the Lady Charlotte wide brimmed fedora with pink trim and the extra large grey arctic fleece with sequin border. Finally, slightly overwhelmed by choice, and anxiety over my head size without hair - I still had some at this point - opted for some plain square cotton scarves and a handy head band that you wear underneath to 'prevent the possibility of hat or scarf slip in strong winds'. ????!!! Not something that had previously occurred to me.
I also got one ready tied scarf (black with gypsy style embroidery) which turned out to be a stroke of genius as the plain scarves came with a horrifying two-sided A4 sheet of origami diagrams demonstrating the many jaunty ways you could tie it. I couldn't even work out which way up to hold the paper.
Second, my fantastic lovely friend and hairdresser Lisa Hilton who has helped me through all of this - from cutting all my hair off in the salon at night when everyone had gone home and coming to Notting Hill to choose and fit my wig, (Trendco, 229 Kensington Church St) managed to turn it into a head of hair I'd be proud of even before I lost mine. Emily commented that it 'was like my hair, only nicer', so I've been trotting around in it all day feeling like the sort of woman who gets up an hour early to blow dry.
Luc said, 'Ok, you can take me to school now', so I guess if it has passed the child challenge I must be fit for public consumption.
My only question is - do I need to wear my super non slip head band in case of strong winds?
First, my parcel finally arrived from youarebald.com (http://www.headcovers.com/), the great US site for people with no hair. I spent a happy internet hour a couple of weeks back selecting from a vast array of head wear and trying to decide between the Lady Charlotte wide brimmed fedora with pink trim and the extra large grey arctic fleece with sequin border. Finally, slightly overwhelmed by choice, and anxiety over my head size without hair - I still had some at this point - opted for some plain square cotton scarves and a handy head band that you wear underneath to 'prevent the possibility of hat or scarf slip in strong winds'. ????!!! Not something that had previously occurred to me.
I also got one ready tied scarf (black with gypsy style embroidery) which turned out to be a stroke of genius as the plain scarves came with a horrifying two-sided A4 sheet of origami diagrams demonstrating the many jaunty ways you could tie it. I couldn't even work out which way up to hold the paper.
Second, my fantastic lovely friend and hairdresser Lisa Hilton who has helped me through all of this - from cutting all my hair off in the salon at night when everyone had gone home and coming to Notting Hill to choose and fit my wig, (Trendco, 229 Kensington Church St) managed to turn it into a head of hair I'd be proud of even before I lost mine. Emily commented that it 'was like my hair, only nicer', so I've been trotting around in it all day feeling like the sort of woman who gets up an hour early to blow dry.
Luc said, 'Ok, you can take me to school now', so I guess if it has passed the child challenge I must be fit for public consumption.
My only question is - do I need to wear my super non slip head band in case of strong winds?
Tuesday, September 4, 2007
One hell of a summer
As most people now know, this summer I was diagnosed with breast cancer, and now that the shock is less shocking, the reality less unreal, it felt like a good time to blog it. Not least because of the myriad lines of communication linking chaotically around the world from Highbury to Hong Kong, about the actual state of life chez Les Domanges. It seemed like a good way to keep everyone up to date with our lives while avoiding the otherwise necessary evil of repeating every little bit of information ad infinitum. This will also stop me from becoming too boring. If it's out there - I won't need to talk about it at all while more important things are going on such as coffee drinking, gossiping and shopping.
All of that done I was sent to my oncologist, also primarily at Barts - Piers Plowman - a very lovely and dedicated man who talks faster and even more than I do. He gave me the good news that there was no sign of any spread to anywhere else (including the main lymphatic node) and that these quick growing aggressive tumours are the first to die given the right dose of heavy duty chemo. I have to add here for everyone that has asked me this question - that the fact that there is no sign of spread does not mean it has not or will not one day. Cancer cells are minuscule and are impossible to track entirely. But overall - all of the above seemed like very good news indeed to me.
Also - for the benefit of people who have asked. They do not give you a prognosis and nor do I want one. Every case is entirely different and treatment is tailored to the individual. All I know is that statistically I'd be happier not having it than having it - but other than that - the future seems to me to lie between a hearty combination of faith, medicine and most of all, luck.
Various people including the breast cancer care nurse told me I would lose my hair, including eyebrows and eyelashes - and I left with a sack load of ominously entitled pamphlets such as 'Coping with Hair Loss - or how to fool the world that you are not a strange, bald alien' and 'How to tell the children - or Oh my God I'm going to die!'
I came home, read everything from cover to cover - put it away - and have never referred to it since. The rest is common sense.
The Children
Luckily (if the word applies in this situation), the children were now ensconced with Francois in a neat little holiday rental on the coast of Brittany. He duly signed them up for every activity going from sailing (Emily - every day) to swimming and tennis. He batted beach balls at them till his arm ached and fed them mussels and ratatouille and lots of chocolate, between clandestine phone calls to me from various Central London medical institutions. At this point I really felt more sorry for him than for me. My lovely mother was luckily with me throughout this stressful week.
Francois then left the kids with his sister for a week and came back to London to see me through the next bit, including the first chemo - then went back to spend another week with them in our own house that the visitors had now vacated. Again, poor thing spent most of the week fixing guttering, cementing bits of stone back to the house while feeding and looking after the children really brilliantly. A great upside was that from the day I left, Luc started speaking French - something he'd always refused to do before. The week with my sister-in-law was great for this too. Both the children have plenty of friends in the village so their week passed pleasantly playing, swimming, eating, reading and playing with Harry Potter lego - so all was not lost. I missed them desperately but realised that they were far better off having a summer holiday than moping around London with a sickly mother. I spoke to them every day and together we broke the news of my dramatic illness. They both took it incredibly well and have, ever since, provided me with the most incredible amount of love and support. We have explained things to them in clear, age appropriate terms, always with a positive spin. The treatment is hard, but I will get better. Luc's main concern was that I should get a long blond wig as he has always fancied a 'long, blond Mummy'.
Now we are all back in one place - both happily back at school and their routine is getting back to normal. Emily, however, is not mad about people asking her about me as it makes her feel scared and uncomfortable and slightly out of control. She prefers to focus on her new school, hobbies and friends. We talk a lot about everything and that is enough for now.
What is chemotherapy like for me?
Again, this is a question that you may want to skip but so many people have asked me that I thought I could just write it here once and never mention it again for reasons that will become obvious.
There are hundreds of different chemotherapy drugs that are used for different people in different combinations. The combination you are on is called the regime. I am on TAC which is a combination of three strong poisons that have excellent results in treating tumours like mine. I am given these drugs every 21 days - on a Thursday. The next one is on the 20th Sept. These drugs kill all the fastest growing cells in the body, including those in the lining of the gut, the mouth, and sadly, the hair follicles - in particular in the head and nether regions. Quite unbelievably while all of the above has now bitten the dust, my lower leg hairs appear to be gripping on with a determination that gives new meaning to the word 'unfair.'
For the first week after the drugs are administered (by very super slow IV drip - overnight so far) I feel so bad that I can barely describe it. I particularly cannot describe it while I am in it. Imagaine having the worst sick hangover known to man and someone asking you to describe in detail your symptoms. No one ever does because everyone knows. Very few people (luckily) know what this is like. For me it feels as if someone has used a dyson on the inside of my bones, while giving me a poisonous hangover (with none of the fun) mixed with the early stages of a bad pregnancy (such as the one I had with Luc). The poison careers around your body in waves and at first the waves are so close together that it just seems unbearable. After a couple of days I start to get windows in the waves where I don't feel quite so bad and gradually these 'windows' get longer and by about day 5 I am able to make it down stairs for a session of Dr Phil. Before that I cannot even listen to the radio as everything is irritating. I have to try to eat my way through this so have little bits of soup, fruit, vegetables and drinks, which can help temporarily. I can barely speak on bad days - even to the people right next to me - I just moan and grumble and hope that they can interpret my incoherent grunts and appear within the next 3 seconds with exactly what I need. Sadly this is a feat for anyone.... By day 6 I am semi functional, can manage more food and a trip to the reflexologist - in my case this is actually a Saint by the name of Tony Porter - without whom I don't know if I would survive at all!
The next two weeks are about gaining strength and not catching an infection. The white blood cells get obliterated by chemotherapy so between day 7 and 14 I am particularly prone and must stay away from anyone with any sort of bug. I did, in fact, get a bug after my first round of chemo - which was a chest infection already lurking - a fairly common occurrence. This sent me back to hospital with a zero white blood cell count and blood pressure so low you could float a boat on it. This was not nice and I want to avoid this happening again.
By the third week in the cycle I should be functioning pretty well (and no, I have not yet signed up for a marathon) before being hit with the next lot.
I am feeling very pleased that I now have two down and hopefully only 4 more to go - so a third of the way there.
Well that's the boring bits over with. I will add to this as I go along and that way anyone who wants to know will just be able to read it straight from the syphynx cat's mouth.....
FINALLY AND MOST IMPORTANTLY
I need to say the biggest thank you in the world to absolutely everyone who has taken the time to call me, text me, listen to me angsting, cheered me up, driven me, looked after the kids, sent me cards, presents, flowers and cakes. It means so so much and really lifts my spirits when they start to flag..
And to the Cancer Caterers - you know who you are....nothing in the world could be more heartwarming, helpful and genuinely gobsmackingly kind than the chemo dinner rota. I will be the only cancer sufferer to come out of this even fatter than when I went in.....Thank you from the bottom of my heart.....
Mary
PS Francois wants to add that he feels exactly the same way. Thanks so much guys.
A quick recap for anyone that hasn't had the full story
A week after arriving in France for our well-earned summer break - I found a strange, hard and alien like lump in my left breast. It seemed to have come from nowhere. I had never noticed it or anything like it before and now it seemed huge. A French GP sent me for a mammogram and ultrasound where they declared it to be a cyst - but as every French consultant worth his salt was holidaying on the coast - I had an overwhelming feeling that I should come back to the UK - get it sorted - and get back to my holiday. Luckily one of our French neighbours is a consultant boob man and he kindly agreed to have a quick fondle in my living room while looking at the various pictures of my chest. Strange as this was - you have to remember that whipping your top off in France just doesn't have the social implications it might have in North London. He very calmly suggested I should get back to the UK as soon as possible - just in case it turned out to need further treatment. He didn't panic me but I am now immensely grateful that he clearly saw the problem for what it actually was. We packed up the house and got it ready for visitors who were renting our house for the first time, we all drove to our seaside rental where I set up beds, food, kitchen etc and got on the next flight back to London. I still thought I could be done and dusted in a week. So far my holiday had comprised of little more than packing, unpacking, making beds, cleaning, packing, unpacking and making more beds....plus ca change!
All of that done I was sent to my oncologist, also primarily at Barts - Piers Plowman - a very lovely and dedicated man who talks faster and even more than I do. He gave me the good news that there was no sign of any spread to anywhere else (including the main lymphatic node) and that these quick growing aggressive tumours are the first to die given the right dose of heavy duty chemo. I have to add here for everyone that has asked me this question - that the fact that there is no sign of spread does not mean it has not or will not one day. Cancer cells are minuscule and are impossible to track entirely. But overall - all of the above seemed like very good news indeed to me.
Also - for the benefit of people who have asked. They do not give you a prognosis and nor do I want one. Every case is entirely different and treatment is tailored to the individual. All I know is that statistically I'd be happier not having it than having it - but other than that - the future seems to me to lie between a hearty combination of faith, medicine and most of all, luck.
Various people including the breast cancer care nurse told me I would lose my hair, including eyebrows and eyelashes - and I left with a sack load of ominously entitled pamphlets such as 'Coping with Hair Loss - or how to fool the world that you are not a strange, bald alien' and 'How to tell the children - or Oh my God I'm going to die!'
I came home, read everything from cover to cover - put it away - and have never referred to it since. The rest is common sense.
The Children
Luckily (if the word applies in this situation), the children were now ensconced with Francois in a neat little holiday rental on the coast of Brittany. He duly signed them up for every activity going from sailing (Emily - every day) to swimming and tennis. He batted beach balls at them till his arm ached and fed them mussels and ratatouille and lots of chocolate, between clandestine phone calls to me from various Central London medical institutions. At this point I really felt more sorry for him than for me. My lovely mother was luckily with me throughout this stressful week.
Francois then left the kids with his sister for a week and came back to London to see me through the next bit, including the first chemo - then went back to spend another week with them in our own house that the visitors had now vacated. Again, poor thing spent most of the week fixing guttering, cementing bits of stone back to the house while feeding and looking after the children really brilliantly. A great upside was that from the day I left, Luc started speaking French - something he'd always refused to do before. The week with my sister-in-law was great for this too. Both the children have plenty of friends in the village so their week passed pleasantly playing, swimming, eating, reading and playing with Harry Potter lego - so all was not lost. I missed them desperately but realised that they were far better off having a summer holiday than moping around London with a sickly mother. I spoke to them every day and together we broke the news of my dramatic illness. They both took it incredibly well and have, ever since, provided me with the most incredible amount of love and support. We have explained things to them in clear, age appropriate terms, always with a positive spin. The treatment is hard, but I will get better. Luc's main concern was that I should get a long blond wig as he has always fancied a 'long, blond Mummy'.
Now we are all back in one place - both happily back at school and their routine is getting back to normal. Emily, however, is not mad about people asking her about me as it makes her feel scared and uncomfortable and slightly out of control. She prefers to focus on her new school, hobbies and friends. We talk a lot about everything and that is enough for now.
What is chemotherapy like for me?
Again, this is a question that you may want to skip but so many people have asked me that I thought I could just write it here once and never mention it again for reasons that will become obvious.
There are hundreds of different chemotherapy drugs that are used for different people in different combinations. The combination you are on is called the regime. I am on TAC which is a combination of three strong poisons that have excellent results in treating tumours like mine. I am given these drugs every 21 days - on a Thursday. The next one is on the 20th Sept. These drugs kill all the fastest growing cells in the body, including those in the lining of the gut, the mouth, and sadly, the hair follicles - in particular in the head and nether regions. Quite unbelievably while all of the above has now bitten the dust, my lower leg hairs appear to be gripping on with a determination that gives new meaning to the word 'unfair.'
For the first week after the drugs are administered (by very super slow IV drip - overnight so far) I feel so bad that I can barely describe it. I particularly cannot describe it while I am in it. Imagaine having the worst sick hangover known to man and someone asking you to describe in detail your symptoms. No one ever does because everyone knows. Very few people (luckily) know what this is like. For me it feels as if someone has used a dyson on the inside of my bones, while giving me a poisonous hangover (with none of the fun) mixed with the early stages of a bad pregnancy (such as the one I had with Luc). The poison careers around your body in waves and at first the waves are so close together that it just seems unbearable. After a couple of days I start to get windows in the waves where I don't feel quite so bad and gradually these 'windows' get longer and by about day 5 I am able to make it down stairs for a session of Dr Phil. Before that I cannot even listen to the radio as everything is irritating. I have to try to eat my way through this so have little bits of soup, fruit, vegetables and drinks, which can help temporarily. I can barely speak on bad days - even to the people right next to me - I just moan and grumble and hope that they can interpret my incoherent grunts and appear within the next 3 seconds with exactly what I need. Sadly this is a feat for anyone.... By day 6 I am semi functional, can manage more food and a trip to the reflexologist - in my case this is actually a Saint by the name of Tony Porter - without whom I don't know if I would survive at all!
The next two weeks are about gaining strength and not catching an infection. The white blood cells get obliterated by chemotherapy so between day 7 and 14 I am particularly prone and must stay away from anyone with any sort of bug. I did, in fact, get a bug after my first round of chemo - which was a chest infection already lurking - a fairly common occurrence. This sent me back to hospital with a zero white blood cell count and blood pressure so low you could float a boat on it. This was not nice and I want to avoid this happening again.
By the third week in the cycle I should be functioning pretty well (and no, I have not yet signed up for a marathon) before being hit with the next lot.
I am feeling very pleased that I now have two down and hopefully only 4 more to go - so a third of the way there.
Well that's the boring bits over with. I will add to this as I go along and that way anyone who wants to know will just be able to read it straight from the syphynx cat's mouth.....
FINALLY AND MOST IMPORTANTLY
I need to say the biggest thank you in the world to absolutely everyone who has taken the time to call me, text me, listen to me angsting, cheered me up, driven me, looked after the kids, sent me cards, presents, flowers and cakes. It means so so much and really lifts my spirits when they start to flag..
And to the Cancer Caterers - you know who you are....nothing in the world could be more heartwarming, helpful and genuinely gobsmackingly kind than the chemo dinner rota. I will be the only cancer sufferer to come out of this even fatter than when I went in.....Thank you from the bottom of my heart.....
Mary
PS Francois wants to add that he feels exactly the same way. Thanks so much guys.
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