Finally, I've finished all my treatments. Well, a couple of weeks ago, actually, but you know how it goes. Life is getting back to normal now, although I'm still tired and catching everything, but who cares! I still feel that I've been given an extra hour or so every day, which is just wonderful.
Another first today - went swimming with no swimming cap. Enough hair at last. Not quite enough to walk down the street with, but fine for the pool. Just in time for summer. When my hair grows long enough for me to feel confident without a wig I'll post a photo but not until then.
Fabulous drinks last week hosted by Julie. Thanks Jules and thanks to everyone who was there with all your kind thoughts, support, delicious food and fine champagne all night. I felt very lucky and special to have so many good friends with me and I'm looking forward to celebrating with everyone else soon!
More good news - my income protection insurer has finally agreed that yes, going through what I have been experiencing (I still struggle with the 'c' word) may possibly affect ones ability to earn a full income. I gave it a good old go, but we'll definitely appreciate the top up for my earnings when it finally does arrive.
Tuesday, September 21, 2010
Thursday, August 5, 2010
Radiotherapy
I've just finished my second week of radio therapy. It's gone so quickly - mainly because I'm so busy, I think. Take an hour and a half to two hours a day out of an already overpacked schedule and yes, time passes. I do wish my income protection insurer would see things the same way.
I can't believe it's two weeks since we were at the snow. We were supposed to be going next week and, of course, there has been over a metre of snow in the last week. Maybe we'll be able to fit in a long weekend at the end of August after my treatments are all finished. If there is still any snow and if I can stay awake for long enough to finish a run by that point.
What? Oh, yes, the treatments. All fine, bit like lying on a sunbed really. Main issue is the time factor, and the money - first week was over $2500 before I start getting reimbursed. Crikey.
Also discovered that I've gained 10 KILOS since starting chemo. They are not going to stick around. Along with the lymphoedema that I started developing before going away, I think that's a sign that I have to pick up my much-neglected exercise regime a bit. Not easy but it has to be a priority.
I still don't have hair, which is a bit frustrating. Just a bit of very fine fuzz. And I never thought that 'fine' would be a word that I'd use about my hair! Hmmmm.
I can't believe it's two weeks since we were at the snow. We were supposed to be going next week and, of course, there has been over a metre of snow in the last week. Maybe we'll be able to fit in a long weekend at the end of August after my treatments are all finished. If there is still any snow and if I can stay awake for long enough to finish a run by that point.
What? Oh, yes, the treatments. All fine, bit like lying on a sunbed really. Main issue is the time factor, and the money - first week was over $2500 before I start getting reimbursed. Crikey.
Also discovered that I've gained 10 KILOS since starting chemo. They are not going to stick around. Along with the lymphoedema that I started developing before going away, I think that's a sign that I have to pick up my much-neglected exercise regime a bit. Not easy but it has to be a priority.
I still don't have hair, which is a bit frustrating. Just a bit of very fine fuzz. And I never thought that 'fine' would be a word that I'd use about my hair! Hmmmm.
Sunday, July 11, 2010
Last chemo
Finally, I had my last chemotherapy on Monday. I did it! After 16 sessions - 6 months of it - my body has just about had enough. The hair that grew back fell out, and I've been dealing with an attractive little rash on my face. All minor stuff, but tiresome. Now I have three weeks off before a quick 5 weeks of radio therapy, then that will be that. Then we'll celebrate!
Sunday, June 6, 2010
No news is good news
I haven't written for so long, apologies. It's been a bit of a struggle getting to it. My main (and really only) gripe about my treatments is that they are all just so time-consuming. In an already busy life, with work and a young family, treatments just absorb that the tiny morsel of disposable time that you do sometimes manage to hang on to.
My other lame excuse is that there really hasn't been much to write about. I'm perfectly well and happy and I've been going along with the weekly treatments, no change. Rest of the time, business as usual. My hair has been growing back, which was exciting for a little while, but seems to have decided to fall out again this week, which is a bit disappointing. With all the recent rain, I've been pretty happy with synthetic hair, mind you.
Because I'm finding Taxol so easy, I'm very much in the mindset of being almost done with all of this. So we booked our fabulous ski holiday in a big house with two other families - only to discover that we'd booked for exactly when I should have been doing radio therapy, which I now understand is FIVE DAYS A WEEK FOR FIVE WEEKS!!!! ARE YOU KIDDING???? I explored all options, but it really was non-negotiable. Fabulous ski holiday promptly un-booked. Very minor, in the scheme of things, but a really disappointing set back and an unwelcome reminder that I am not yet back to normal and still have a bit of work to do. We have re-booked for an earlier week, but remaining accommodation and timings available only worked for us, so very sad to have stuffed up the holiday for everyone else. But there really was no other option, no compromise possible. So time to move on, and at least look forward to the holiday we are going to have. Goodness knows we deserve it.
I've been to see my lovely radio therapy specialist, Dr Izard, a name that is probably more entertaining to English friends than Australians. I really liked him and could tell that he'd figured out what I'm all about very quickly. It really sounds like a breeze compared with chemo and I think the only pain will be having to set aside an hour every day to do it. (Apart from paying for it, that is. After Medicare and Health Fund rebates we'll still be up for about $1500, but hey, I kind of think it will be money well spent.) Thank goodness I'm self-employed (with wonderfully understanding clients), thank goodness we live just around the corner from the hospital, and thank goodness for mobile broadband. Five weeks is really nothing, after all, but I do think we might have a bit of a party at the end of it. Wanna come?
My other lame excuse is that there really hasn't been much to write about. I'm perfectly well and happy and I've been going along with the weekly treatments, no change. Rest of the time, business as usual. My hair has been growing back, which was exciting for a little while, but seems to have decided to fall out again this week, which is a bit disappointing. With all the recent rain, I've been pretty happy with synthetic hair, mind you.
Because I'm finding Taxol so easy, I'm very much in the mindset of being almost done with all of this. So we booked our fabulous ski holiday in a big house with two other families - only to discover that we'd booked for exactly when I should have been doing radio therapy, which I now understand is FIVE DAYS A WEEK FOR FIVE WEEKS!!!! ARE YOU KIDDING???? I explored all options, but it really was non-negotiable. Fabulous ski holiday promptly un-booked. Very minor, in the scheme of things, but a really disappointing set back and an unwelcome reminder that I am not yet back to normal and still have a bit of work to do. We have re-booked for an earlier week, but remaining accommodation and timings available only worked for us, so very sad to have stuffed up the holiday for everyone else. But there really was no other option, no compromise possible. So time to move on, and at least look forward to the holiday we are going to have. Goodness knows we deserve it.
I've been to see my lovely radio therapy specialist, Dr Izard, a name that is probably more entertaining to English friends than Australians. I really liked him and could tell that he'd figured out what I'm all about very quickly. It really sounds like a breeze compared with chemo and I think the only pain will be having to set aside an hour every day to do it. (Apart from paying for it, that is. After Medicare and Health Fund rebates we'll still be up for about $1500, but hey, I kind of think it will be money well spent.) Thank goodness I'm self-employed (with wonderfully understanding clients), thank goodness we live just around the corner from the hospital, and thank goodness for mobile broadband. Five weeks is really nothing, after all, but I do think we might have a bit of a party at the end of it. Wanna come?
Sunday, April 25, 2010
New drugs treating me well
I'm a week into the new chemo and very happy to report no apparent side effects so far. No nausea after the treatment, maybe slight tiredness by the end of the day this weekend, but, frankly, who doesn't get that. Very happy. The next 12 weeks will be easy - I've clearly done the hard yards and they were not exactly difficult.
I'm on the lapatinib only branch of the trial I signed up to. The amazing advantage of this is that it comes in pill form. So instead of having infusions for a year I just have to pop a couple of pills a day, once this current 12 weeks is over. Of course, this is brilliant for me, but imagine how much it will mean for people from more remote areas who need treatment, assuming the trial is successful.
My hair is just starting to grow back! If it stays, in a couple of months I might be brave enough to go out sans wig. Maybe. It will be easier for swimming, anyway. Last weekend we were all jumping off the boat - weather still warm at 25-29 degrees during the day, and the water is also still lovely even when the air temp cools a little. Wigs and scarves don't quite work for that, and a swimming hat isn't quite the thing either outside of a lap pool. I have a little sunhat that ties under my chin and doesn't budge - has been perfect for water parks and equally so on the boat. But hair will definitely be better. Can't wait!
I'm on the lapatinib only branch of the trial I signed up to. The amazing advantage of this is that it comes in pill form. So instead of having infusions for a year I just have to pop a couple of pills a day, once this current 12 weeks is over. Of course, this is brilliant for me, but imagine how much it will mean for people from more remote areas who need treatment, assuming the trial is successful.
My hair is just starting to grow back! If it stays, in a couple of months I might be brave enough to go out sans wig. Maybe. It will be easier for swimming, anyway. Last weekend we were all jumping off the boat - weather still warm at 25-29 degrees during the day, and the water is also still lovely even when the air temp cools a little. Wigs and scarves don't quite work for that, and a swimming hat isn't quite the thing either outside of a lap pool. I have a little sunhat that ties under my chin and doesn't budge - has been perfect for water parks and equally so on the boat. But hair will definitely be better. Can't wait!
Tuesday, March 30, 2010
Un dos tres QUATRO
I had my last of the four tri-weekly sessions of chemo last week. Can't say I'll miss it. Felt the same as usual - slightly sick but ok for the first three days, tired from Thurs night through to Sunday, then suddenly back on top form again. Now I have FOUR WEEKS OFF! NO TREATMENTS!!! Fantastic, perfect timing for our Easter farm trip. In a tent.
Then in four weeks I start the 12 weekly sessions which I'm hoping will be milder given the frequency. That's what I'm told, anyway. So I'm halfway through, kind of.
You know what? Between you and me... I still have leg hair! I feel cheated!! BUT, I also still have eyelashes and eyebrows, which I wasn't expecting, and for which I am very, very grateful.
Happy Easter!
Then in four weeks I start the 12 weekly sessions which I'm hoping will be milder given the frequency. That's what I'm told, anyway. So I'm halfway through, kind of.
You know what? Between you and me... I still have leg hair! I feel cheated!! BUT, I also still have eyelashes and eyebrows, which I wasn't expecting, and for which I am very, very grateful.
Happy Easter!
Monday, March 8, 2010
ok OK then, I'll write something!!
I'm getting the hang of this now. I've had Chemo 3, and it seems that I am pretty much fine, with some background nausea and just lower energy levels for a week, then back up to speed for two weeks. So, good to have that worked out in time for the last big session, then.
Next I switch to a different drug, for twelve weekly sessions. Generally better tolerated, so fingers crossed. My hair might start to grow back then. Pray for straight and blonde, people. That's when I'll be really glad to be living a ten minute walk from the Mater, I think. At that time I also start on either herceptin or a clinical trial of another drug (the name of which escapes me), if I want. Both herceptin and this other drug are used successfully in treating secondary cancers but only herceptin currently used in her2 positive people like me. Me and Kylie, that is.
The trial will either put me in a group that takes herceptin only, the other drug with herceptin, or the other drug only. Pros and cons with each option, of course, which have all been explained to me, but this other drug has the advantage of working on the brain, which herceptin apparently doesn't. I'm quite fond of my brain so that's the main reason that is making me lean towards participating in the trial.
Before the third chemo I had a device called a portacath installed under my collar bone. Friends who know about this were quite disturbed that I'd had this done without a general anaesthetic. Not half as disturbed as I turned out to be, let me tell you. If I'd had any idea that I was going to be filleted alive in order for the surgeon to repeatedly and vigorously reverse park his range rover in my flesh (that's what it felt like), I'm not sure I would have approached the procedure quite as I did (driving in, organising to take son to swimming lessons immediately afterwards...). Lesson 1 - surgery while awake is very, very wrong. Lesson 2 - post surgery, a device that provides direct access to a vein can provide a passing impersonation of the Trevi Fountain. At family mealtimes. Nice. Still, I'm glad it's there now, no more excavations looking for veins or trying to type with a canula in the back of my hand for me. Woohoo.
OK, that's it, I'm tired. Off to bed. Don't get cranky if I don't write so often. Managing treatments, family and work are sometimes enough to make you not want to switch on a computer at ten or eleven o'clock at night. Right now I'm planning to switch it off.
Next I switch to a different drug, for twelve weekly sessions. Generally better tolerated, so fingers crossed. My hair might start to grow back then. Pray for straight and blonde, people. That's when I'll be really glad to be living a ten minute walk from the Mater, I think. At that time I also start on either herceptin or a clinical trial of another drug (the name of which escapes me), if I want. Both herceptin and this other drug are used successfully in treating secondary cancers but only herceptin currently used in her2 positive people like me. Me and Kylie, that is.
The trial will either put me in a group that takes herceptin only, the other drug with herceptin, or the other drug only. Pros and cons with each option, of course, which have all been explained to me, but this other drug has the advantage of working on the brain, which herceptin apparently doesn't. I'm quite fond of my brain so that's the main reason that is making me lean towards participating in the trial.
Before the third chemo I had a device called a portacath installed under my collar bone. Friends who know about this were quite disturbed that I'd had this done without a general anaesthetic. Not half as disturbed as I turned out to be, let me tell you. If I'd had any idea that I was going to be filleted alive in order for the surgeon to repeatedly and vigorously reverse park his range rover in my flesh (that's what it felt like), I'm not sure I would have approached the procedure quite as I did (driving in, organising to take son to swimming lessons immediately afterwards...). Lesson 1 - surgery while awake is very, very wrong. Lesson 2 - post surgery, a device that provides direct access to a vein can provide a passing impersonation of the Trevi Fountain. At family mealtimes. Nice. Still, I'm glad it's there now, no more excavations looking for veins or trying to type with a canula in the back of my hand for me. Woohoo.
OK, that's it, I'm tired. Off to bed. Don't get cranky if I don't write so often. Managing treatments, family and work are sometimes enough to make you not want to switch on a computer at ten or eleven o'clock at night. Right now I'm planning to switch it off.
Monday, February 8, 2010
Conversation with Henry (aged 4)
Henry - Mummy, is this my rude finger? (accompanied by appropriate gesture)
Me - Yes darling, that is your rude finger.
Henry - Well... (gesture repeated) this isn't for you. It's for your hair.
Me - I see. Did you like mummy's old hair better than her new hair?
Henry - Yes, but I don't really mind (leaves, satisfied, point has been made).
Me - Yes darling, that is your rude finger.
Henry - Well... (gesture repeated) this isn't for you. It's for your hair.
Me - I see. Did you like mummy's old hair better than her new hair?
Henry - Yes, but I don't really mind (leaves, satisfied, point has been made).
Chemo 2
Feeling good again today after yesterday's chemo. How lucky am I?! The nurses think I'll probably carry on that way too. I did feel a bit more sick and tired yesterday evening but I think that was to do with the timing of the anti-nausea drugs (at bedtime instead of at dinner), because I woke up in the night feeling back to normal again. I'll adjust the timings for the next session as last time seemed to suit me better.
I almost couldn't have the session as my white blood cell count was too low according to Saturday's blood test. It seems strange, because I've been feeling so well, but it's a good warning that, in fact, maybe I am not invincible and I do need to take care to avoid infection. It is a good sign that the chemo is working on the fast-reproducing cells, which is the point of all this.
However, a repeat blood test prior to the scheduled session yesterday showed the count to be back up - on with the show. I have to give myself a white blood cell boosting injection today, to make sure that doesn't happen again. So that will be fun, hey. A whole world of new experiences! Diabetics have to do it all the time, what am I complaining about?
Oh, and my hair finally started falling out. I am moulting like a cat. Thank goodness I shaved it off when I did! I am loving my wigs and scarves - real hair is so overrated!!
I almost couldn't have the session as my white blood cell count was too low according to Saturday's blood test. It seems strange, because I've been feeling so well, but it's a good warning that, in fact, maybe I am not invincible and I do need to take care to avoid infection. It is a good sign that the chemo is working on the fast-reproducing cells, which is the point of all this.
However, a repeat blood test prior to the scheduled session yesterday showed the count to be back up - on with the show. I have to give myself a white blood cell boosting injection today, to make sure that doesn't happen again. So that will be fun, hey. A whole world of new experiences! Diabetics have to do it all the time, what am I complaining about?
Oh, and my hair finally started falling out. I am moulting like a cat. Thank goodness I shaved it off when I did! I am loving my wigs and scarves - real hair is so overrated!!
Thursday, January 28, 2010
Things that make you go hmmm...
Now, I can't remember exactly when my hair was scheduled to fall out but all I can say is that it hasn't happened yet. If I have shaved it all off for nothing, I'm not sure how philosophical I'm going to be. This will, I'm sure, be a relief for those who are somewhat concerned about me having turned into Pollyanna since diagnosis.
Apart from that, just wanted to let you all know that I woke up on Monday morning with no more residual bleugh at all from chemo 1, so I went off to a step class, all felt totally fine. Brilliant. Then I caught a cold from the boys on Monday afternoon. Not so brilliant. I was a little concerned as to how my body would cope, as I'm not supposed to have much of an immune system. Turns out that, rather than descend into pneumonia, I threw it off just as usual. I am soooo lucky. Either that or they've slipped me a placebo as part of some evil research project (visions of Fran Boyle dropping the civilised veneer the second we close the door behind us... MUAHAHAHAHAHAAAAAAAAA!!!... Maybe not.)
Apart from that, just wanted to let you all know that I woke up on Monday morning with no more residual bleugh at all from chemo 1, so I went off to a step class, all felt totally fine. Brilliant. Then I caught a cold from the boys on Monday afternoon. Not so brilliant. I was a little concerned as to how my body would cope, as I'm not supposed to have much of an immune system. Turns out that, rather than descend into pneumonia, I threw it off just as usual. I am soooo lucky. Either that or they've slipped me a placebo as part of some evil research project (visions of Fran Boyle dropping the civilised veneer the second we close the door behind us... MUAHAHAHAHAHAAAAAAAAA!!!... Maybe not.)
Thursday, January 21, 2010
The Dirty Blonde is Here
So today, still feeling fine following first chemo, I did the deed, cut off the hair that I must have had in the same style for oh, ten years! At least. About time. I went to my usual hair dresser and got her to section it off and ponytail-band it top and bottom to keep for selling/donating to charity. Then we chopped, and shaved down to a number 2. And then on with the wig - the Dirty Blonde arrives! Now, clearly, I can't possibly upload this post without a photo...
I chose when my hair goes, not the drugs! I never would have had the nerve to do this if I hadn't had too, mind you. It was reassuring to be recognised by the lady in the supermarket on the way home. And the children were gorgeous about it all when they came home from their sleepover. Mike wonderful, of course. As he should be, having been given a free pass to make out with a blonde! Love to all xxx
Monday, January 18, 2010
First chemo
I feel good doodndoodndoodndoo I knew that I would, now I feel good doodndoodndoodndoo, I knew that I would, now, So good, so good, I got anti-nausea medication. I feel good doodndoodndoodndoo, I knew that I would, now I feel good doodndoodndoodndoo, I knew that I would, now. So good, so good, I got anti-nausea medication.
So far so good, guys. I had my first chemo session 1.30pm today, all very pleasant in the Cottage at the Mater ('Cottaging' being the alternative title that I had in mind for this post, naturally). To date, no noticeable side-effects. It's now just coming up to 9pm. I feel maybe as though I've had a couple of glasses of wine, the slightest, vaguest background queasiness... Anyway, that's one down, only three to go of the big chemos.
Off to Look Good Feel Better workshop tomorrow to ensure ongoing glamour despite having a passing resemblance to Vin Diesel - which surely has to be an anagram of something. I'll leave it with you.
xxxK
So far so good, guys. I had my first chemo session 1.30pm today, all very pleasant in the Cottage at the Mater ('Cottaging' being the alternative title that I had in mind for this post, naturally). To date, no noticeable side-effects. It's now just coming up to 9pm. I feel maybe as though I've had a couple of glasses of wine, the slightest, vaguest background queasiness... Anyway, that's one down, only three to go of the big chemos.
Off to Look Good Feel Better workshop tomorrow to ensure ongoing glamour despite having a passing resemblance to Vin Diesel - which surely has to be an anagram of something. I'll leave it with you.
xxxK
Monday, January 11, 2010
Water baby
A week to go before Chemo starts, and I'm using it to make sure that I get as much of my fitness back as possible before next week. I started swimming a few laps while we were spending most of a sunny Sunday at Northbridge Baths - and it felt fantastic! Slight stiffness around the upper arm at first, which soon melted away. I swam again today and I'm just loving it. My arm and under my arm wasn't hurting at all, but it did feel a bit stiff which was annoying me. This seems to be helping so much in getting back to normal. Better than normal - let's not aim low. Swimming was the best feeling, I couldn't help smiling. Smiling and swimming do not always go well together, I've discovered. Makes your goggles leak.
Tuesday, January 5, 2010
The Lazy Blogger
(with reference to the old lincsea site, of course, for those who are part of that)
Hi everyone,
Sorry that I haven't been online recently. Tempted to say that I've been far too ill, as I know that excuse can get me pretty much anything these days, BUT the truth must out, I just haven't got around to it. I've either been working or having too much Christmas holiday fun, but I know that when I don't write anything people start worrying, so I thought I'd better get on with it.
So, what's new? I had a meeting with the legendary Fran Boyle on Christmas Eve (we are not worthy, we are not worthy...) and we are planning to start chemo Jan 18th. So that will be fun, hey. More fun than the alternative anyway. I'm sure it won't be pretty but I'm keeping an open mind. From the literature, it seems that I'll either be nauseous or ravenous, knackered or insomniac, fat or thin... so glad we've got that sorted out then.
It's been good to have a couple of extra weeks to get used to the idea of chemo. And to have an extra couple of weeks of hair over the holidays! But, more importantly, the extra time has allowed me to put myself more solidly in the space of looking forward to the treatments. I can almost feel all of that incredible medicine infusing my system already, knocking on the head any rogue cells that may have dared to evade my 'take no prisoners' approach to surgery and making sure I stay well.
A few things that rock about starting chemo that come to mind today:
- no leg hair, no underarm hair... I could go on!
- no need to spend time overcoming wild curls each morning
- I get to try out new looks I never would have dared to go near otherwise
- It get to spend time with some of the most brilliant, caring, capable professionals I've ever met
- I find out how tough I can be (mind you, childbirth would have done, thanks, however...)
- I find out how wonderful and supportive all the people around me are
- Oh, yes, then there's the one step further towards being well forever. Quite keen on that bit, actually.
Brilliant to finally catch up with Dimity and her friends after Christmas as well. And finally I get to meet Wiggy, who hasn't lead me astray yet but I can feel her rearing to go from her spot in my bedroom. With Wiggy the party girl and the Dirty Blonde, 2010 is definitely not going to be a dull year.
Hi everyone,
Sorry that I haven't been online recently. Tempted to say that I've been far too ill, as I know that excuse can get me pretty much anything these days, BUT the truth must out, I just haven't got around to it. I've either been working or having too much Christmas holiday fun, but I know that when I don't write anything people start worrying, so I thought I'd better get on with it.
So, what's new? I had a meeting with the legendary Fran Boyle on Christmas Eve (we are not worthy, we are not worthy...) and we are planning to start chemo Jan 18th. So that will be fun, hey. More fun than the alternative anyway. I'm sure it won't be pretty but I'm keeping an open mind. From the literature, it seems that I'll either be nauseous or ravenous, knackered or insomniac, fat or thin... so glad we've got that sorted out then.
It's been good to have a couple of extra weeks to get used to the idea of chemo. And to have an extra couple of weeks of hair over the holidays! But, more importantly, the extra time has allowed me to put myself more solidly in the space of looking forward to the treatments. I can almost feel all of that incredible medicine infusing my system already, knocking on the head any rogue cells that may have dared to evade my 'take no prisoners' approach to surgery and making sure I stay well.
A few things that rock about starting chemo that come to mind today:
- no leg hair, no underarm hair... I could go on!
- no need to spend time overcoming wild curls each morning
- I get to try out new looks I never would have dared to go near otherwise
- It get to spend time with some of the most brilliant, caring, capable professionals I've ever met
- I find out how tough I can be (mind you, childbirth would have done, thanks, however...)
- I find out how wonderful and supportive all the people around me are
- Oh, yes, then there's the one step further towards being well forever. Quite keen on that bit, actually.
Brilliant to finally catch up with Dimity and her friends after Christmas as well. And finally I get to meet Wiggy, who hasn't lead me astray yet but I can feel her rearing to go from her spot in my bedroom. With Wiggy the party girl and the Dirty Blonde, 2010 is definitely not going to be a dull year.
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