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?

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!

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!

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.

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).

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!!

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.)