Tuesday, December 22, 2009

Announcing the Dirty Blonde

I purchased my new hair this morning. I have a bob sort of style, which currently sits on top of my real hair much like a helmet. Kept getting the giggles when Sharon, the lovely wig lady, referred to the colour as 'dirty blonde'. Fun to try on different colours and styles, although husband somewhat disconcertingly enthusiastic regarding the prospect of a completely different looking wife...
The Dirty Blonde will therefore be available for lunches, cocktails and business as usual in the new year and looks forward to meeting you all!

Monday, December 21, 2009

She's back!

I came home on Sunday evening, back to the real world. Given the choice between fishfingers en famille and roast spatchcock at the Mater, strangely decided to come home after dinner. Mike did an amazing job keeping everything going while I was reclining in air-conditioned comfort, especially given it was the last week at work before starting a new role in the new year. Very grateful to my mother-in-law too for all of her help.

The nurses took my last drain out on Sunday which is just so liberating. Apparently not a great idea to go swimming or weight training in the short term, but I have all of my usual energy and I'm able to do everything else. I look and feel exactly the same as I did before, just a couple of kilos lighter after all the fasting for surgery and so on. Pretty happy with that!

It was great to catch up with Jules and Suz on Friday night - they brought champagne and we were joined by my surgeon, Kylie, for a while as well. Girls' night in!

Tomorrow I have an appointment with my wig lady. Good to be ready, and in this weather the prospect of being able to take my hair off is really very appealing. I'd never have had the nerve to cut my hair short without this and I'm oddly excited to be able to try out a few new looks.

On Thursday I see the oncologist to plan my treatments for the new year. Can't say I'm looking forward to that bit too much, but, as I mentioned to friends this morning, it certainly beats the alternative! I'm putting my mind to blessing it and welcoming it for what it is - a safety measure to ensure I stay well. OK, looking forward to it now (kind of).

xxx

Thursday, December 17, 2009

Greetings from the Mater

Hi there

Two days now since my op and I'm feeling pretty good. Got rid of my drip, had a shower and put on my own pjs this morning - the re-humanising process begins! Blood pressure was too low yesterday to do anything very constructive but all normal today.

Had a look at my... what? Wound? Sounds a bit war-like. Anyway it's very neat and flat and not at all confronting as I had thought it might be. I don't mind it. It is what it is and I see it as the physical evidence of triumph over my former disease and therefore - in a way - beautiful. And temporary, of course. If I knew I had to live with this forever I might not be quite so impressed. We are talking about reconstruction options already, even though that's a little way down the track. I quite like the idea of taking excess fat from somewhere else vs an implant. I could think of a couple of good spots (although I'm not sure that my husband's stomach is an option!)

I'll probably stay in hospital til Saturday as it's such a busy time of year and I quite fancy a rest - and a bit of peace and quiet to get some work done. One drain due to come out tomorrow, the other one on Saturday. Then I'll be running around a free woman for Christmas.

Friday, December 11, 2009

Bring it on!

Right then. I am ready. Quick trip up to Warringah Mall yesterday (4-year-old in tow - entertaining!) to get all my bras, swimmers etc and my darling friend Nic has sent me her wigs. I am equipped - bring it on! This disease doesn't know who it's messing with - I am about to play hardball.

Wednesday, December 9, 2009

Next surgery

Going back to the Mater Hotel I mean Hospital on the 15th, probably around midday, for next surgery. Expect to be away for a few days, but I'll be online.

Monday, December 7, 2009

Crowd surfing

So buoyed up by the tidal wave of support from all of my wonderful friends, family members and the professionals I have on my team. I'm crowd surfing! I think that counting your blessings plays a big part in shaping a positive and happy future, and tonight I'm thinking about all of those people who I am lucky enough to have in my life at the moment...
... my incredible husband, for his broad shoulders, willingness to do whatever it takes and ability to step up like no-one I know
... Mum and Dad for their cheerful, practical help and not falling apart in response to the fact that their child is experiencing this while they are at a distance (I'm not sure that I'd do so well). And also - so importantly - for giving me the courage, humour and resilience I have discovered in myself since this story began
... Mim, who drops everything to help without blinking
... Jules who was drove me to my first appointment with the surgeon and was right there when I got The News - tough gig
... Nic in Melbourne, who is my angel and has sent me her gorgeous wig. And The Girls...
... all friends who have phoned and emailed their support, and also those who haven't because they know I just need to get on with everyday life as well
... my colleagues at MBF for supporting me in my rather bizarre recent work patterns
... Kathryn, who has done so much phoning to bring people up to speed, and I know that you really don't have the time to spare
... my big cousin Kerry, who is always funny and supportive despite having so much to deal with in your own world
... Nicola and Alison - more big cousins still looking out for me
... Jeni who was important in making me aware enough to catch this thing early
... Dr Kylie Snook who got the bastard out!
... Catherine and Adrian who straight away had Bill for a sleepover when I was last in hospital... and for all of the other sleepovers which will follow
... Michelle who taught me how to make Medicare work so that we don't bankrupt ourselves
... Lisa and Gareth and Suz for dropping by and making me laugh
... Nic, Neil and Denise, Jay, Mandy, Melissa, John, Dimity for sharing their stories, their hope, their experience
... Gill for having our get-together at her house when I couldn't do the beach DESPITE three children, including a newborn, and also Kay and Bec for being so willing to catch up wherever I wanted to
... Dr G for referring me to the right people at the right time
... Fran Boyle who is a legend in whom I trust
... Clare who just gets me, gets it, and acts on it, and is so amazing
... Dimity who is reaching out to someone she doesn't know from Adam. Eve, maybe.
... Joelle for sending me treats to cheer me up (I am utterly cheered)
... Jacqui and Pete, Angela and Stuart, Bec and David, Kate and Michael for offers of help with the boys. Sleepovers will definitely help in the new year when treatment kicks in, and we'll be in touch
... Sarah D who knows I should be meditating and doing yoga but doesn't tell me off when I can't be bothered
... Rita who made sure we are insured and sent me a small rainforest
... Sarah G - ever the recruitment consultant - who is putting me in touch with exactly the right people
... Neil who has popped back into my life right when it counts
... Sally Schmidt for stepping up to help with my hair (sounds silly but it is so on my mind)
I have been warned by a couple of people that a few friends would let me down and would turn their backs on me. So far no duds! You are all wonderful and I am honoured to have you with me.
xxx Kathy

Saturday, December 5, 2009

More followers please!!

I know you are out there! Friends and family, please add yourselves as followers because the diva in me is frankly quite enjoying being the centre of attention.

Thursday, December 3, 2009

Eyes on the goal

(Written Friday)

Today I am celebrating.



In our meeting with Dr Kylie Snook we agreed that the best way forward is for me to have a mastectomy, and probably have the other side done to match in a year when I have the reconstruction.



I had prepared myself for this outcome, and I have to say that I am very happy about it. This as near as you get in this game to a guarantee of this disease not coming back later. I'll never have to worry about that now. One thing we know in our family is that an 'all clear' isn't necessarily forever, and that's something that I think would always have been at the back of my mind once my treatment is over.



Of course, I don't like the thought of being lopsided for a year any more than I will like losing my hair, but I feel as if I've been given a gift of peace of mind and a few more percentage points certainty of a long and happy life. Planning to raise a few glasses to that very shortly.



For now, I am keeping my eyes firmly on the future. In a year I'll have my hair back, and just wait until you see the rack I'll end up with!!!



xxxk

A couple of days of fun and normality

Sorry not to have written anything for a couple of days, but there has been nothing much to report, other than a couple of days of normal life (albeit with the drain from my surgery still in tow, but hey) and pre-Christmas fun, and it's been wonderful.

We all went to see Bill in the starring role of Santa in his school play. He did beautifully, delivering all his lines perfectly and with great gusto. The children all looked so adorable and sang their little hearts out, although I think I may have detected marginally less enthusiasm from the boys who had to wear grass skirts for the Hawaiian Christmas segment.

Last night I had a ball at the Marketsoft drinks at Wildfire, really enjoying the chance to relax and catch up with friends and colleagues over a few well-earned champagnes. I was wondering whether indulgences of the night before would be able to be detected by the nurse who came to check my dressings and measure blood pressure etc this morning, but I think that Dr Henry's determination to help may have distracted her.

Took Henry swimming today, and he displayed a very elegant freestyle stroke in his lesson. Apparently the water was freezing so I wasn't too disappointed not to be able to get in with him.

We are off to see Dr Snook at lunchtime tomorrow to find out whether or not I'll need more surgery before chemo, so I'll write more then. I'm quite happy with either outcome, but I'd really like to get on with the chemo as the quicker we get started, the quicker we'll be finished.

What is up with Christmas beetles, by the way? No creature should fly into things that much.

Sunday, November 29, 2009

Dr Fran Boyle

We went to our first appointment with Dr Fran Boyle, my oncologist for chemo, this morning. She is brilliant, I am so lucky to be seeing her. I really liked the fact that she is not only is she right at the forefront of the field, but she is such a nice person, easy to talk to. Top chick. She is interested to get to know more about us, who we are and what we do, not just the clinical conditions. That really fits in with how I see things - I am still me, I still do what I do, I just happen to have a few diseased cells that we are getting rid of. My disease is not me, I don't want it to take over.

Dr Boyle explained things so clearly. I probably won't be quite so clear, but here goes. My particular type of cancer is 'her2 positive'. This means that it responds to a drug called herceptin which I'll receive after a first set of chemo treatments. It is caused by a fault in the genes, but not an inherited one. No one knows yet what starts it, but we do know that this type of cancer is not hormone receptive ie nothing to do with the pill. One gene to do with epidermal growth suddenly decides to start reproducing itself and causing trouble. Her2 knocks that one the head. Only 15% of breast cancers are her2 positive, so I'm feeling special! It's good news, because it's something very effective that can be done to stop this coming back.

There is also another drug called lapatinib currently being trialled across the world which stops the rogue gene in a different way, cutting off how it communicates from the inside of the cell. I'm going to try to get on the trial, and so I'm having a heart test at some point soon to check that I'm all good to go.

How amazing, don't you think? All these brilliant minds and incredible research, all to get the best outcome for little people like me. Apparently some countries don't fund herceptin (and at $60,000 for a year, you can see why) so I'm pretty happy to be living where I'm living, with all these top specialists and facilities just down the street. I love where we live, but I never thought it would bless me like this.

So, the plan is this: if further surgery needed (ie another 5 star trip to the Mater - however will I cope?! ;-)) Dr Boyle recommends doing that first. Then we start on a first round of chemo, with a session every 3 weeks for 12 weeks. Then I start on a second round of chemo, with 12 weekly sessions with smaller doses, for 12 weeks. That's when I will be truly grateful to be living and working 2 minutes away from 'chemo cottage' I think. That is also when the herceptin starts. After the second set of chemo, hercpetin carries on through radio therapy auntil 12 months. Also the trial, if I'm lucky enough to get on it, will involve tablets at this time.

I am VERY keen to get on with it. A little impatient, but perfectly happy for everyone to be completely sure they are getting this right before we start. Watch this space!

xxx Kathy

Thursday, November 26, 2009

Some more good news today

Had my post-op appointment with the brilliant Dr Kylie Snook today.

We were hoping to find out whether margins around bit they chopped out were clear, which will determine whether or not further surgery needed. However, pathology still working, so nothing finalised, and we won't know until next week. Two key margins are clear (hooray), still looking at the last one (almost there, still don't know).

The reports all go to a meeting next Weds, and we meet again with Kylie (the surgeon vs the singer) on Friday to determine whether surgery + chemo + radio needed, or just chemo + radio.

Great news is that only two lymph nodes were affected, rest all clear. And apparently I do still have some lymph nodes as well, so that's nice then. My rings still fit my finger - very happy about that.

Still no pain, and mobility normal in shoulder area. Now that I've dared to look, can also confirm that new boob looks better than old one - nice work Kylie!!

Wednesday, November 25, 2009

Home again

I came home from the wonderful Mater hospital yesterday evening with my three beautiful boys. I feel I have a very good testimonial for private health insurance in me right now! I can't believe how lucky I am to have had that amazing care and such fabulous facilities, right at the end of the street. So good to be home and back to some sort of normality again.

I am also feeling so grateful to my surgeon, Dr Kylie Snook, who has left me in so much better shape than I imagined possible. I am experiencing no pain and seem to have full mobility in my left arm and shoulder. I will keep taking my panadol (yes, that's really all) and doing my physio exercises to make sure nothing changes, but just can't believe how good I feel after such major surgery.

I have to carry a post-op drain around in a custom-made little black shoulder bag for a few days. No big deal, everything made as simple and as comfortable as possible.

Busy morning, with visits from Apac nurse, physio, Susie Cummins and Mim looking after Henry
Bear. Great to have so much support, but I'm also enjoying a little quiet time before the Bear gets back.

Tuesday, November 24, 2009

The story so far...

I've decided to set up this blog because I am so blessed with support from friends and family but I'm struggling to keep everyone up to date with how I'm doing day to day. So, log on whenever you like and I'll do my best to keep it current.

As I'm sure you already know, on Monday I had a small but mean lump removed from my left breast and will be starting chemo and radio therapy soon, when it’s all healed. I’ve caught this thing early and prognosis is very good. I am in good spirits, very positive and keen to get on with the work I’ll have to do over the next few months and looking forward to coming out the other side with a clean bill of health. I’m aiming to be skiing next year!

This is not the hand of cards that anyone would want to be dealt, but these are the cards I have, and now it's up to me to play my best game with them. I plan to return to wellness and normal life as quickly and completely as possible, with optimism, strength, humour and love.

No pain at all from the surgery, which seems strange, but I'm not complaining! I also seem to have full mobility in my arm and shoulder, despite having my lymph nodes removed. Who needs them anyway?! I'm very glad that it's my left arm, makes life a lot easier. I have a 'drain' from the surgery, which means carrying a small bottle around in a little black shoulder bag for a few days. Hoping to go home when Mike finishes work tonight.

Mind you, it's a lovely day out there and I'm tempted to do a runner. Better not.

Bill and Henry know that I have had an operation to have the lump removed, and then I’m going to have lots of strong medicine that will make me feel a bit sick and tired for a couple of days after each time I have it. They know the medicine is going to make my hair fall out and so I’ll be wearing wigs etc but it will soon grow back. They know life will carry on as usual as much as possible, but that things will be different for a few months. I haven’t used the word 'cancer’ yet, but think Bill has worked it out. Bill thinks that it would be pretty cool for me to go around bald and thinks that I'm going to grow a beard.

Dr Henry came in with Mike last night and charmed the ward, funny little man.

Mike is being amazing, 100% the person you would want to have by your side when tackling something like this. When a real challenge comes along, that's when you see how someone steps up. And he has really stepped up. How wonderful that after almost ten year's of marriage you can have the opportunity to really see what your husband is made of. Darling, I love you so much.

This journey, I think, will be very enriching in terms of the important relationships I have.