Cutting up Rough - Bilateral Mastectomy & Reconstructive Surgery

Dear Titillated Readers,

The trip to Royal Melbourne Hospital at 5.45am was uneventful. The day was overcast and traffic, light. In negligible time we were parked and headed to the Theatre admission reception on the third floor. A revisit of name, address and date of birth, just to ensure that I hadn't duped someone else into undertaking this procedure for me, and I was ushered through to finalise the details.

The nurse provided me with a hospital gown and a pair of those extremely fetching paper undies. Stretch stocking socks and paper booties. again completed the ensemble.  After changing and a tearful cry and hug with Siobhan and saying that I was scared and didn't really want to do this, it was time for me to leave my wonderful rock  and head through the swinging doors into the theatre complex, knowing that we wouldn't see each other again that day.

Guided to what looked like the recovery area I was put onto a gurney. This place was busier than the Flinders/Swanston streets intersection with all 12 theatres geared up and ready to each receive a patient. A quick peruse suggested much diversity of both people and procedure for the staff that morning as I was wheeled into the outer area of Theatre 1. Horrid fluroescent lights provided that buzzy blue-hued  lighting that always makes me feel slightly queasy. Once stationery, two plastics registrars (not two plastic registrars) greeted me (Andrew & Laurent from memory) and asked me to stand. There, with my gown pulled down to my pubic bone, my Plastic Surgeon, Dean Trotter, together with these two other docs, proceeded to play dress-maker patterns on my torso from breast to hip, drawing dotted black lines around, alongside and under my breasts and around nipples. And then to determine what could be taken from my tummy, Dean grabbed my belly with both hands and squeezed. Ever stood near naked in front of a couple of strangers and  had one of them grab your wobbly bits with both hands mentally weighing up what size cup he can turn your tummy fat into ?? Bizarre. Not a lot of dignity people, let me just say.

Following a brief but extremely reassuring visit from my wonderful Breast Surgeon Anita, whose
responsibility would be to take the breast tissue and nipples from both breasts, it was onto the next
meet and greet opportunity.

Back on the guerney, I was introduced to my anaesthetist, whose name I sadly cannot recall as I would like to declare her a national treasure. Suffice it to say, this excellent clinician ensured that not only did I enjoy an uninterrupted 9.5 hour sleep during the operation, my post operative recovery and first night was utterly trouble free for which I will be eternally grateful. When one is cut from left to right hip slightly higher than across the bikini line following the DIEP procedure which creates a new belly button and resulting tighter tumm, post operative vomiting would be a violent and extremely painful impost.

My anaesthetist inserted various bits and pieces and liquids into me to make me drowsy. She placed over me an extremely light weight blanket, one side made of extremely fine towelling paper, the other side was a very fine plastic not unlike the thickness of cling wrap. She then connected this blanket up to a plastic hose that was in turn, connected to a small portable unit now attached to my guerney at the end of the bed. Like an old fashioned portable hair dryer, my blanket inflated as warm air was pumped into the pockets. It felt like I was enveloped in a cloud - a warm and reassuring hug, which given its name Bair Hugger (though it should be Bear ), was utterly appropriate.

The Bair Hugger

The  last thing I recall was being wheeled into Theatre 1 and counting myriad people moving around what was a central chamber with two outer chambers linking in from separate doorways. I didn't remain conscious long enough to count beyond the 9 people I could see. But there seemed to be plenty more moving backwards and forwards in a variety colour of scrubs.

I had wanted to ask whether it would be appropriate to have some pictures taken during the operation and even a couple of short video clips of the interesting bits to upload here .....the cutting open, the nipple removal and the taking of the stomach flaps but on the other hand, I was unsure whether the key players would appreciate some kind of social media "So You Think You've Got  Talent"  intrusion into their work space. I decided not to ask and determined that immediate post surgical pics were sufficiently gruesome enough to give you the general gist!!!!

So I will post some photos with explanatory captions in the  blog below that trace the first days post operation as well as the first 10 days or so post surgery so that you can see the body changing. I will post more stuff over subsequent months as my body heals and the swelling subsides and also to document the next stages (creation of nipples and tattooing that still must be completed).

Many things happened during my stay in hospital that I wanted to write about in actual real time  as there are so many bizarre and ritualistic occurrences, that to the lay person can seem so absurd but to the health care professional are banally routine but I simply did not possess the energy to do so.

To provide you with a reference point, I have included a shot of what my breasts were like immediately pre-surgery. You will recall that the left breast had been operated on twice in May of this year, the first time to remove the tumour and the second time to clear the margins and also 12 lymph nodes under my arm which had tested positive. As the margins had  to be cleared as a result of the second operation, regardless of the type of reconstruction I opted for, a third operation on my left breast was required.

Now if  I was 17 years of age, posting a picture of the boobs would not be a such confronting decision  (firstly because "kids these days", think nothing of sending pics of their pink bits to their 4000 closest Facebook friends, and secondly because if  I was 17years of age, my boobs would be too!!!!) but in the interests of seeing what has been done with this procedure and also being able to see how quickly the body heals from major surgery is something quite compelling.

My breasts pre- operation.
Note the underside of the left breast where
two surgeries had been undertaken in May 2013 

My operation lasted 9.5 hours. I was taken to recovery and then onto the Plastics/Trauma Unit - Ward 7 South East at RMH late on the evening Monday 11th November.  For the next 24 hours, the nursing team (and every consultant, registrar, and coffee delivery man) would come into my room (a heaven-sent single private room thank you RMH) and "check my flaps" every 30 minutes. An unfortunate turn of phrase, one must concede, for the two pieces of skin grafted from my belly onto and into the place where my nipples once were situated.

The "lollipops" are the "Flaps"
Note the newly created belly button and
hip to hip suture line. 

So there I am throughout the evening, and night of November 11th, and the early hours of November 12th, still significantly delirious from the surgery and the anaesthetic with the wonderful nursing team popping in every 30 minutes and pressing the site of both grafts to test the return of the blood flow to the site which indicates that the blood supply is being maintained and telling me that my flaps look brilliant and the medical staff popping in and out randomly throughout  the night also requesting of me to allow them to look at my flaps and following a bit of a press and a wait, also providing me with grave approval that my flaps did indeed look tremendous!! If I hadn't been so off my head,  and extremely restricted in movement, I think I would have split my suture lines from laughing at the situation.

Right Breast Lollipop

Left Breast  Lollipop

Sleep deprived and with a catheter and three drainage lines in situ, this routine continued for some days. Each morning, at 7.30 am or thereabouts either my Plastic Surgeon or the Senior Plastics Registrar would bring in a gaggle of junior doctors, some time as many as 8 of them in my room learning the ropes through exposure to the cases being  undertaken in the Unit.




Now either I am getting so old that all doctors are looking like they were born this century, or they are sampling and experimenting on themselves and each other,  all the new plastics procedures. They did not have a wrinkle to share between them if their life depended on it. All bar two were male and they all looked like they had stepped out of the pages of the latest GQ magazine!!! Very very good looking. Perhaps a selection criteria??? After all, would you trust an unfortunate looking plastic surgeon????

By day two post surgery with all tubes still in place things started to go awry. Not my flaps - they, it seems, were still fabulous - pink, soft and warm......responsive to touch indicating excellent blood flow but I would not be out of the woods for a full 48 hours post surgery. Apparently the loss of blood flow to the flaps can result in very quick deterioration and the graft can die.  In case of a blood clot, you are raced back to theatre to address the clot and restore supply to the flaps. I hadn't seen them given my viewing angle and I couldn't bend to see the suture line across my tummy. However, of concern was my dropping blood pressure and oxygen levels and my extremely low urine output.

I was put on a regime of fluids including bags of saline, magnesium and phosphorite something or others- all 12 litres of them. Despite all the available orifices ( including all natural and those recently man-made by my doctors) through which this fluid could leave my body, for inexplicable reasons it did not and guess who ended up looking like Violet Beauregard after she had eaten Willy Wonker's experimental gum ball!!

Look Ma........no neck!!!

I too no longer had wrinkles. Each finger and toe was its own bratwurst sausage and my skin was stretched to such a degree that bending my arms was uncomfortable. Sure, I had no crows feet and my skin was stretched very firmly across my face but I didn't look like one of those "Real Housewives of Beverly Hills". No, for me it was more a case of "Real Housewives of Bariatricville"!!!!!!

My Plastic Surgeon wasnt overly worried by the swelling as it meant that my flaps were being well supplied by well hydrated blood vessles, The fact that they may have soon needed to tether me to my bed in the event that I either rolled, or floated away like a big fat balloon did not appear to cause Dean too much concern. Mind you he seems to appear as a pretty cool customer perhaps well used to the absurdity of the situation.

He was confident that once I was up and moving around all the fluid being retained would make its way from my body. However, what with being cut from one side to another across the tummy and with the catheter and three drains in situ, this not so little black duck wasnt that all that keen to be getting out of bed anytime this century! It led to me having a bit of fluid on my lungs that coughing to dislodge proved to be a very difficult feat. So they placed this smoking mask across my face which had some chalk like substance in it that I was to breathe in and which would break up the congestion.

It did the trick and things started to improve. By Day 3 Post Surgery (Thursday) I had been assisted from bed and had taken a shower. A very long, painful and slow process when you have a a suture line, a tighter tummy and new belly button from the resulting tummy- tuck arising from the DIEP procedure. All of a sudden shower chairs,  raised toilet seat frames  and other such medical accessories are your fashion must haves!!!

I will write subsequently about the care I received whilst an inpatient at RMH as it deserves its own blog entry. But I can say this. You just know when you are being nursed by an outstanding nurse clinician. - their economy of movement, they exude a quiet strength and consistent confidence, their protective and preventative actions that assist your compromised movements and the grace in which they move around a disabled body and engage that patient in the process is a truly marvellous thing to behold. Bereft of the benefits of physical modesty and feeling utterly vulnerable due to such a compromised physical and emotional state, the quiet respect and competency demonstrated by your nurse towards you is the greatest salve to your jaded spirit.

So for the next few days, random registrars would appear at ridiculous hours and check out my flaps, take bloods (huge difficulty with my veins post chemo) so bloods were taken by doctors at weird times with no regard for standard "business" hours. Their engagement with you is so polemically different to that of the nursing staff. You are a set of boobs or flaps in my case, a series of wounds and drainage sites and perhaps also a set of symptoms. Trying to get them to engage with you can be a bit of a fun sport!! It appears that the relunctance to engage with the human being giving rise to the medical raison d'etre is still very much the style taught in our hospitals. I understand that with age and experience comes greater confidence and ability to relax and engage with your patient directly but seriously, the poor bunny in the headlights response to any patient generated direct question does need to be addressed in their training at some stage, the poor loves.

Two of the three drains were taken out Day 4 post surgery (the two draining fluid from my breasts) leaving the abdominal drain in place. Each day I was able to move a little easier though one still (and still does 10 days later), resembles a little old lady with curvature of the spine, so bent in half am I. I was discharged two days earlier than expected, undoubtedly directly attributable to my brilliant, fantastic flaps!!!

So I head home to the care of the Siobhan whose love, care and support have brought me through this protratced process to date. The West Highland Nursing Agency staff, whilst decoratively enhancing the home environment, are abit negligent in their duty of care unless it directly involves a bribe of a treat or cuddle!! At home, I am able to rest comfortably in a motorised recliner chair that I had brought for my mother more than 13 years ago, proving to all and sundry (particularly Siobhan) that hoarding can be a valuable personality trait!!

On Day 7 post surgery having been home for two nights, I have to head back to RMH to a wound clinic for them to check my abdo drain. I had had reason to call out Hospital In The Home (HITH) on my first night home, due to my drain tube running from my tummy and over the left arm of the recliner to a small plastic bottle on the ground(see above) and the dogs tearing around the corner to welcome someone at the front door, when they got caught up and pulled the tube out!!!!! Borrowing a wheel chair from Siobhan's mum we were able to head into the Hospital and then have a brief walk in the fresh air without me collapsing. I am able to only walk very short distances due to a combination of sore stomach becuase of the wound and lower back pai occurring because I am walking with a stoop!!!!!

I loathe the fact that my hair looks the way it does now as it could be mistaken by some as having been done intentionally.  I do not have the face, nor the build for such brutally short hair!! Though had we been in Broome, one would have fitted in rather well there. Lots of gals with veeeeeeeery practical hairstyles and sensible shoes in Broome let me say!!

So now its Day 11 post surgery and here is how my body looks today. The abdo drain was removed at long last yesterday thus avoiding any further Westie entanglements or kitchen drawer catchings. Poor Siobhan is exhausted as she is single handledly responsible for all and everything around and about the house. I have a sway of follow up appoitments and can still only do few things for myself unassisted. I remain on some pretty fabulous pain killers and get tired soooooooo easily but I am more than happy with progress  of the operation to date.

You judge for yourself. Hope you are enjoying good health good people

lotsa

Kelly






PS......The very sexy Compression garments one must wear 24/7.......sexy or what!!!

Farewell to Arms....I mean Boobs

Dear Bosom Buddies, 

It has been a while but much has happened in the intervening weeks since I last wrote. My surgery is scheduled for tomorrow and is expected to be, on average around a 10 hour operation. I have to report to the hospital at 6.15am - AM peoples....... in the bloody morning. 

 I am to undergo a bilateral mastectomy (both boobs, folk) and then undertake a DIEP Flap reconstruction. DIEP stands for Deep Inferior Epigatric Perforator. - an artery which runs through the abdomen. Firstly my  Breast Surgeon takes alI the breast tissue from both breasts (and also my nipples) but leaves both the "breast envelopes" . Then the second stage is that two plastic surgeons will also be cutting me across from left to right hip and then each taking a "flap" from my tummy which blood vessels will form the basis of my new breasts.   I have attached a brief description of the procedure for your edification. It's quite major surgery lasting between nine and ten hours and a stay in hospital for one full week. If the duration didn't give it away, the length of stay should have, given, as we all know the propensity to kick you out these days with tubes, pumps and theatre utensils still in situ!!

Check out this link to find out the gory details!!!!


http://prma-enhance.com/breast-reconstruction/diep-flap


As you will see from a quick read of the above, they take out all the breast tissue and I lose my lovely nipples as well (where we know there are still some DCIS (pre-cancer cells lurking in the milk ducts of my left breast) as well as some cancer cells also loitering suspiciously in the margins of the lump site of my left breast that we weren't able to clear with two bouts of surgery.  

Like the intervening weeks prior to my last post, I have taken some time to get my head around the enormity of my choices, weighing up the respective merits of the different procedures and then deciding upon the best one for me. This is not as straight forward as it sounds. Like a veritable kid in a toy shop, I was almost overwhelmed by the range of procedures that are on offer. However don't get too excited folks, it's not simply a case of picking the best one. Rather its more a case of which one you, are best suited for. 

One could have elected for a unilateral mastectomy and then faced a reconstructive surgical option to match the left breast with the right breast - not an easy task when one considers weight, age, gravity, scarring etc. As I said in my last post, this was never an option for me psychologically not only because of the asaethetic, but because the remaining right breast tissue might be a time bomb.  However my breasts finally look, I want them to look similar ! The research I have done shows that the matching process is quite difficult. 

So then faced with, what will afford me the greatest peace of mind, and the best odds of cancer not re-occuring, I decided on a bilateral mastectomy. But in deciding this doesn't come without consequences. I will lose the sensation of my breasts and nipples as they fashion new nipples from skin and then tattoo it and an area around it to create an areola-like visual. 

This is where the DIEP procedure comes into its own. 

Not for me saline implants. Even though they afford you with the most accurate symmetry, as a perfectly perky set of bosoms, they need to be replaced every 10, 15 or 20 years, depending on who you talk to. Everyone is different, but I know that I couldn't be pfffaffed getting a new set of mag-wheel jugs at 70 or 75 years of age. And at 52 years of age folks, I really dont want my boobs walking through the door three weeks before the rest of me does!! Not for me, porno-boobs!!!

But in order to "qualify" for a DIEP Flap procedure, I needed to be tubby enough for them to grab handfuls of my tummy flab (very confronting, let me tell you!!) but not sooooo chunky, that they had too much to work with. Its a challenging thing for health professionals to simply regard me as a fat-relocation-suitablility-specimen withour knocking their blocks off, let me just say!!!!!!!

So here I am, writing this and just 12 hour away from presenting at the hospital.

I feel ok. The overnight bag is packed. I have my books and ipad to entertain me. I have read the stuff about the patient-administered pain relief that I will have when I come around post surgery. Never had serious drugs before. Could be a hoot. I know that I will feel like shite. I know that I have to just get through the next week. The major metroplitan hospital in question had better deliver on all its patient centred "quality" initiatives, otherwise you will read it here first!!

I will cry.

I will feel vulnerable....

But I will get better.............

So, good people, this isn't the end. Apparently I have further stuff (nipple creation, boob re-adjustment, tattooing, all ahead of me in about six months time) so in the interim, I hope to show you pictures from the start to the finish, just so you know. If you are the queasy type, just scroll down quickly in subsequent posts, but for those that want to understand the breadth of this, the pics are there for you to get an idea of how this stuff works. What is hardest for me is that for six months I will have lumps on my chest without nipples - that will make me feel like a toy Barbie...........

I am intending to ask the theatre guys to take pics and to do so throughout my recovery in the hope that it demystifies and simplifies the process. Am a bit coy about this but will get over that as coy is not my natural state. In the interim, good people, here are some great photos of beautiful Broome that Siobhan and I were privileged enough to spend two weeks just three weeks ago.  The place is magnificent. We stayed at The Pearle and couldn't recommend it highly enough. The water at Cable Beach was a balmy 26 degrees every day.........

We live in a beautiful country.........

Take Care !!!!

Kelly xxxx

The last three Chemo Cycles - A Brutal Time

Greetings Poison Free Peoples,

Its been a while since I last shared I am afraid. Rest assured I haven't died. But I have to admit, I have experienced great relunctance to sit down in front of this computer and share with you this part of the experience. For many reasons actually....

Firstly, a blow by blow description of every bloody awful sympton that Docetaxel has gifted me these last six weeks would either desensitize you or bore you senseless depending on your perspective on illness, or make you so terrified of a cancer diagnosis for you or a loved one that involved docetaxel. Apparently though it does affect people differently and whilst I didnt suffer so badly with FEC (my first chemo regime for three goes), some people do and go on to have no problems with Docetaxel. Its a crap shoot apparently. But perhaps the greatest reason for finding this so hard to journal was that each time I tried to write about what was happening I would just start crying and become ridiculously and dramatically verbose - again running the risk of boring you all senseless!!!

So today is one of my few good days and my mind is clear and my body only marginally compromised so here I go providing you with an update overview. Apols if its a bit lengthy but I have to write whilst I am feeling ok.

Yesterday, September 12 was my last chemo session. I want to refresh your mind with reminder of how I looked at my first session to how I look now at my last session and the effects over this period

Now I look like a bad Gary Ablett Jr!!!

Yesterday was an  auspicious day for two reasons. 1. Because it was the last of my six chemo poisonings and 2. It was our dear friend Pauline Crameri's birthday. I am going to go one better than Facebook Paul, and send you blogged birthday wishes!!!!! Trump that Facebook Friends!!! Miss Viviette came and shared with me, what is hopefully my last ever chemo chair experience on this mortal coil. I will now start my downhill slide into pain and discomfort and this will last around 10 days, after which I will hopefully start to improve and start the long slow road to improved physical and mental strength in time to bat up for a double mastectomy - hopefully using the abdominal flap method. But I will save all those gory details and pics for latter blogs peoples as it is, quite simply fascinating!!

Lets go back now. I had the first of my three cycles of Docatexel six weeks ago on a Thursday

 I enjoyed (thoroughly) a three day speed high wherein I filed, cleaned, tidied and folded towels, manchester and anything standing still, like a fenzied fifties housewife on valium! Tres productive. 

By the Saturday night though the underside of my feet felt like pulverised raw meat. By Sunday, all my joints started to swell and ache terribly. Not only did I have cankles people, I had thankles. (Thanks Rob) There was little discernable difference from the top of my thighs down to my ankles. My face swelled to Bert Newton-like proportion, with fluid particularly gathering in my cheeks, jaw and neck. I looked like a rugby league player able to take out a brick wall with only a ten step run-up. 

My legs started to lose strength and the capacity to maintain my own torso weight. I began to experience first hand, the horrors of limited mobility without conscious significant effort. In the beginning I had to rock from side to side to shift and obtain a forward momentum. By the second day of this affliction I could no longer manage that and Siobhan had to help me on and off the bed, the toilet and the couch. I think that the sheer awfulness of losing independent mobilty will stay with me forever. 

During this bad window, I experienced many fucking awful symptons. I was on the toilet so often, the bloody toilet seat has effectively molded to the shape of my backside. Anytime I ate anything, it barely made an impression on my seriously impaired, metallic and woolly tastebuds and spongy gums, before gleefully scooting past my osephagus, letting me know of its passage south with a violent and noisy episode of reflux, to then making its way to my gut and providing my intestines with what seemed like hours of cramping and subsequent sweats and pain and finally, exhausted blessed relief as the waste left my body for the umpteenth time that day. I could be more descriptive good folk, but I will refrain in the interests of decorum and simply say.....suffice it to say, my bottom was oh so very very sore. Even during the night there was no relief as violent toilet trips were 

frequent so little sleep was had. 

Sleep deprivation was also caused by what was the worse symptom. I felt like a torture victim. In addition to having legs sore and swollen and reminiscent in size and shape of John Nichols (anyone not a footy supporter - google it!), it was like someone had attached connected transmittor patches all up and down  my legs and random electrical currents of varying strength and intensity were transmitted at will over a relentless 48 hour period. I didn't know what was worse the pain from the electrical currents that made my legs involuntarily seize then jolt around, or the pain incurred from the tensing of my muscles in anticipation of the next series of currents. Fucking, fucking awful - at one stage I ended up on my hands and knees on the bed crying in pain screaming that I couldnt take it anymore. 

In addition to losing body fluids and waste at one end of my body, I was also inflicted with a constant running nose that contained small amounts of blood from constant clearing and my eyes teared endlessly for days making vision and basic walking or seeing very difficult. My nails have lifted from their respective toe and finger beds as they have become discoloured and fragile. I have gained more than seven kilos. And my eyes twitch constantly. And perhaps the saddest physical evidence for me of all things is no eyebrows, no eyelashes making me look and feel like a flesh coloured bowling ball and my feet are always so very very sore, that I cannot ever imagine wearing high heels again in this lifetime. Those who know me well will undertsand that this alone has shaken me to my core!!

This was the pattern for the first two cycles and I now face the third cycle knowing that more of the same is on the way this coming week. I am tired, the fatigue just doesn't go away. I look like shit. I no longer "bounce back" like I did with the first three cycles and I have lost the ability to return to my natural state of a positive equilibrium that has probably been my single best attribute that I have been so lucky to have all my life. 

During these two last cycles, I have also "gotten" an infection that has resulted in a temperature over the desired maximum of 37 degrees. When one has a very low white cell count - usually around Day 8 - Day 10 one is in danger of being neutrapaenic (?? spelling). being neutropaenic menas that even a small increase in temperature can have very serious, even fatal consequences so one must act sensibly and quickly. On both occassions during such days I have had an infection. An infection during the first Docetaxel cycle was one complete with its own sense of utter irony. One has no hair........anywhere peoples. But guess who was the lucky little petal that got an infection from an ingrown hair - "down there" that left me with....let's just say....a fat lip!!! You will understand perfectly why I have not shared any pics of this particular episode!

Well this little bald duck wasn't going to go into an ED and have some first year Emergency Registrar pocking around, slicing and dicing her pink bits anytime soon, despite the potential seriousness So I took some left over antibiotics and hoped that between the weekend and my Monday appointment with my GP, my temp would have dropped. Am still here so all good and GP and Medical Oncologist conferred and established that it was in fact better not to cut one open when one is so compromised  - so good call to lay practitioner Minogue!!! Second cycle infection resulted in me having to go to St Vincent's last Wednesday week ago as temperature soared to 40 degrees and I felt like utter rubbish. Peter Mac didn't have a bed available so Pauline whisked me down there, Siobhan left work and met us at ED, I used my magic card for fast track entry ahead of a busy ED crowd and spent the next six hours hooked up to saline and stuff as they brought my temperature back under control. Here I am looking suitably tragic on a trolley in ED but St V's people were just wonderful. On both occassions a blood test determined that I wasnt neutrapaenic at the time so all was good. 

They couldn't establish the site of this infection and I ended up having a chest x-ray to see if that might help but no luck. I do expect though that I will go three for three and have another infection in around 10 days time. Am so over it but you have probably worked that out by now....... Again for a compare and contrast. Here is me first time bald on the left and below that on the right, how I look now......Less Sinead O'Connor and more beige non-descript person!!

But its not all bad good readers, I have celebrated a lovely birthday in early September with the incomparable Siobhan, enjoyed a lovely lunch, dinner, beautiful flowers, gifts and thoughful cards from the dearest and most treasured friends and most thoughtful colleagues. I have been well enough to attend a good friend's father's wake and I have been able to see my perennial garden warm to the sunshine and begin its Spring into life. I have had the joy of being cared for by the best nursing agency who I think may become a not insignificant council problem if I ever have the audacity to return to full time employment and leave them home alone!!

Three of the four West Highland Nursing Agency team watching vigilliantly over their patient.
The fourth is at the Drug Cupboard sourcing me some pain killers!!

One final fun night that I spent during a brief good window was the second last home and away when we beat Richmond. Let's not dwell on that or the subsequent victory during the finals, shall we, as I genuinely felt for Siobhan and also believe that Carlton on merit alone, dont deserve to be there. But this particular post footy celebration at the Baden Powell resulted in me meeting my favourite player from the  Carlton Footy Club ever - Frazer Brown.

I am a footy supporter who prizes substance over style any day. And Frazer - or Dog as he was known had it in spades. He was a fearless, ferocious and dogged opponent, a true hard man at the ball. I loved his work ethic and his ability to take as good as he gave. His performance in the final in 1995 from memory against Essendon that won us that final will live in my memory forever.....and he had the best hair.......ever!! Still does in fact. The fact that he is the nicest, utterly unpretencious bloke you would ever care to meet is icing on the cake. And he swears beautifully!! One for the picture album without a doubt. He also brought me a drink to boot!! 

So there you go folks, we are up to date with the ghastly stuff. I will now have around 10 days of crap and then hopefully start to improve. I will begin the work and research for the surgery options having done some prelimary consultations with the terrific Plastics Consultant at Peter Mac this week and had 10 topless shots taken of my boobs by the "medical photographer" all for medicinal reasons natch - but the hands on hips and hands on head poses felt a tad porno-ish for my liking......The mastectomy part of the process though scary, arduous and quite the undertaking will be quite a learning curve so please stay tuned for future updates.

I will leave you with a photo of the best and most useless redundant presents I have ever received from the wonderful Michelle - a pair of Captain Carlton hair clips to keep my hair out of my eyes and off my face.... 

Stay well and look after your selves.

Kelly xxx

My Role........Quentin Bryce or Josiah Bartlett??

Good Morning Football Lovers Everywhere,


It would be incredibly remiss of me if I didn't make at least a passing mention of the trials and tribulations facing our great game. To distill it to its purest form- particularly for those readers of this blog who aren't such footy fans, I will put it like this...............

I honestly believe that I would rather be facing my cancer challenge than be in the tanarexic skin of one James Hird at the moment!!!!

Moreover, I think that the until now, seemingly impenetrable bulky frame of one Andreaus Demetrio will absorb some potentially fatal body blows in the coming weeks.

I would go as far as to suggest that this is a good thing because quite frankly, between these two blokes, and all the meat head ex-footballer media commentators,  tripping over themselves to say something constructive using words of more than two syllables proves that footballers should just retreat quietly into the background post playing career. 

Give me Caroline Wilson & Greg Baume of The Age and Patrick Cook of The Oz anyday.

And if that isnt enough, I have also to endure the unpleasant frequent assault of having the extremely unappealing heads of the Mister Rabbit and Mr Sheen dominating our media air waves, during this totally unedifying federal election campaign.

"What Evs"

I am heartily sick of all these blokes and their inflated bloody egos!!

My country's vision for the future and my personal code of religion is totally dominated by spin and counter spin.

The existence of sex appeal is really an individual thing I guess

I demand a refund!! 

Is it possible that a dead heat loss could be orchestrated for both scenarios?? Someone, anyone?? Antony Green, Mike Fitzpatrick, help me out here.

Before I enthrall you with my tales of woe of the effects of Docetaxel, during the past three weeks, I need to expunge a mental battle that I have been having with myself over the past six weeks. Its been keeping me up at night

When this chemo is over, I will need further surgery as some cancer cells remain in the margins of my left breast. As a result I have a decision to make as to the type of surgery I opt for, a) go into the same site and try and clear the margins, b) have a bi-lateral mastectomy (single left breast) or b) a double mastectomy. If I choose options b) or c) then there are further decision around the type of mastectomy and reconstruction but I will leave those fun details for later complete with some photos to illustrate the enormity of those decisions. My conundrum revolves around my role in the decision making process of the choices that I get to make.

Originally, post my second surgery, some members of my "team" were more supportive, for want of a better word, of the benefits of a double mastectomy for me given all the facts. For me it was a no brainer. I am 51 and despite popular culture indicating otherwise, this is relatively young. Notwithstanding this cancer, I am in good health. My beautiful beautiful mother died an awful horrible death from breast cancer at the age of 61, the memory of which stays with me each and every day despite it being 17 years ago. I have always maintained that I want to leave Peter Mac with just two things- and no, I don't mean two breasts!!!

The first deliverable for me is that I want to leave this experience having secured for myself the best and lowest odds possible for a chance of reoccurrence, not only in this left breast of mine but in both.

The second is that I leave this place with a peace of mind that provides me with some semblance of being able to reasonably place this episode into the memory of my life's experience towards the back stalls of my mind alongside the messier experiences of my epilepsy, my briefly traumatic  adolescence and the many bad hair decisions of my past. Not to be relegated to the point of denial but not so present that it continues to unduly influence who I am and how I react to stuff. I  thoroughly expect that I will undergo a consuming period of reflection for a time later this year or early next as I come to terms with the last twelve months but once that is done then I want to move on. 

What I know about myself and my treating team do not, is that an essential ingredient for me being able to do that, is to have the peace of mind with the body image that I can accept, to do this. It is really that straight forward.

In recent meetings though I have sensed a strong reluctance from my medical oncologist and my breast nurse for a double mastectomy option because  as it has been put to me this is arguably not essential or germane to effectively "dealing "with this cancer. I can understand that perpective but I cannot agree.  Whilst they are there to deal with this particular bout of cancer, I am here to ensure that to the greatest extent possible, I dont return to deal with another return bout or new bout of cancer.

This got me to thinking about my role vis a vis the role of the clinicians in such an equation.

Once when I visited Mum at home, well into her illness, she was in a bad way. I went to visit her with a friend from work Lisa,who offered to change her pressure sore bandages. Mum was lying face down diagonally across the bed and as Fitzy changed her bandages Mum reached out her arm to me and as tears rolled down her face she said "I just don't know if I can do this anymore" I gave such an inadequate reply to her that day that it still makes me cry all  these years later. I said to her that she would be alright. And neither she nor myself really knew any different. We knew so little. We asked so few questions. We put forward no challenges to the prevailing behaviour that the doctors knew and did what was in her "best interests". 

In the management  of my grief after her death, I promised my Mum and myself that I would never be as ignorant about my health as she and I were about hers. So with all the diplomatic tact of a Bolshevic, I have approached this tour of duty wanting to know and demanding to understand my options and not accepting at face value those that others would have for me. 

Let me be very clear. My experience at Peter Mac has exceeded all maxims of excellence. They embody a patient centred experience that hitherto I thought only as empty quality-speak jargon.  However, whilst the patient is at the centre of their deliberations, their clinical speciality remains the driver for their preferences - not the patient. 

In my view, a radiology oncologist will want to use their knowledge and skill in conjunction with the medical oncologist and the surgeon to minimise if not eradicate the cancer that is present in the here and now. Likewise the medical oncologist having provided the comprehensive insurance policy of the course of chemo wants to see that complimented. Each has their preference or professional bias. And as previously indicated in my earlier entry, the team will order their argument to steer you In a certain direction. 

I cannot believe that they are genuinely interested in my mental health in the coming months or years ahead. This isn't a criticism just a statement of fact. We share a brief leg of a journey looking out the same window. But then they disembark and I continue down the track facing new and challenging outlooks but still related to the same core issue - the existence of cancer and its potential to become a hostile squatter in my body again in the future, whilst coming to terms with what my breasts end up looking like.

As my last chemo cycle draws near, for the team with the exception of the surgeon, and plastic surgeon I suppose, I am nearing the  tail end of the process. If I opt for the more radical surgery, then, as I understand it, the Rad Oncologist  possibly doesnt have a role until after my surgery, if at all. Equally, if I elect for the more radical surgery, presuming a psychologist  deems me suitable, then preserving my own nipples places me at risk of future cancer cells developing (DCIS, I presume). And for them who see this as a bigger and arguably unnecessary operation with greater risk associated, why bother about the possibility of fear when they can deliver a perfectly reasonable  11% chance only of re-occurrence. To them these are good odds. And I agree,  if I was 75 or 80 years of age and didnt have decades ahead of me.

I understand their perspective and they may be thinking my position is one of pursuing unrealistically low odds and/or vanity but I disagree.  According to my medical oncologist a  double mastectomy reduces my odds from 11% (accompanied by oral meds for 5 years) to  between 1 and 2%. So to me from the odds perspective, a riskier operation and a temporary longer recovery time is a no brainer as it affords me greater peace of mind for years. An opportunity cost that to mine is well worth it.

With the type of surgery options, I have yet to fully canvas all options so wont go into them as yet, suffice it to say, what little I have seen, I know that I could not have a single breast different from the other. What I  have done to one I want done to the other. I dont want one breast without a nipple and one with, I dont want different coloured nipples (one fake & one real) or one perky breast with scars and one droopier breast without. This is not about vanity. While over time I have come to accept my short stumpy legs, fat knees and menopausally minted torso. I have long ago accepted that I am not a thing of beauty, I am drawn from the gene pool of my anscestors.  To that end, though I have a great personality and I am a good and kind person ( and very humble clearly!!) but I have always had great boobs. They have been perfectly symetrical - unusual but true.

In the months ahead as I deal retrospectively with this without the distraction or diversion of appointments, tests and treatments, I dont want to look down in the shower or in the mirror and be negatively reminded each day of the ugly trauma my body has been through. I want them to be badges of honour and winning and not badges of depression and loss. If both my breasts approximate the same size, colour and shape with matching accessory nipples and scars then I can cope with that.

So, I need to understand and articulate my role and responsibility in making that happen. I need to convey this to my treating team in the weeks ahead.  If I dont want to make waves, I can accept the Australian political model as a guide and simply follow the advice of my Ministers as our GG is required to do and comply with their advice based on their skill, knowledge and experience.

Or I can follow the American model of politics and upon hearing the advice based upon the experience skill amd knowledge of my Department Secretaries, I can make my own decision based upon what is best for me.

As I am the only member of my wonderfully skilled team, who knows me well enough to know what I can deal with that will secure the optimum outcome for me over the coming years, I will take opt for the Josiah Bartlett model and determine the outcome accordingly once I have all the facts and options before me.

I think Mum would be happy with that.

lotsa

Kellyxx

Chemo Barbie Visits Thornbury for a Hair Razing Adventure !

Welcome Back Cancer-Curious-Colleagues,

Its been a while since my last post - more than five weeks I think. But I have good reason. Its been a shit time. I have been so sick, that for a time there, I simply wanted to  curl up and die. That is such an enormous statement that I cannot believe that it can come out of my head. But its true. I will regale you of the plight of this new chemo in subsequent close- together blogs, as I have some catching up to do, to provide an accurate picture, so keep a close eye out over the next few days for new updates. 

So starting with the week before my last chemo which was on August 1, we enjoyed a wonderful weekend wit some great people. After that its down hill quite a ways...................

The Saturday before my fourth chemo cycle, (late July) we headed for our now routine rural retreat with the hairy nurses in tow for their country ramble. This time we headed mid west towards Macedon to visit a specific winery called Curly Flat and to have lunch at Kyneton at Annie Smithers Bistrot (which she has recently sold). The new owners have kept the name. Let me also say from the outset, that they kept the quality of the food as well!! Always up for a languid lunch and wine tasting, was one Denise Patterson who we collected over the Westgate Bridge, popped onto the Western Ringroad and headed up the Calder. As we had a later than expected start and all three human passengers were starving, we headed first for lunch. Scallops all round for entree - amazingly indescribably perfect!! Though for some (not moi) the mushroom and cheese souffle was a hard entree to pass up. DP settled on the boeuf bourguignon pie which was a beautifully presented golden puff pastry total casing with a creamy mash - a perfect choice given that it was colder in Kyneton than any reception that Kevin Rudd would receive at any Australian Feminists' conference these days. Siobhan and I opted for this local aged angus beef cooked to perfection with an exquisite jus and roasted veg ensemble....heaven. Sadly we couldnt fit in dessert but with coffee we enjoyed the most extraordinary selection of petit fours that were complimentary. A wild raspberry jelly square covered in a fine dusting of icing sugar, a piece of homemade honeycomb, that tasted of pure honey and a chocolate salted caramel fudge ....................I would go back there just for them alone. Highly recommend this lovely place with great food, wine selection, service and decor. 

Following that we headed to Curly Flat winery to try their range. We let the dogs out for a wander and headed inside the restored farm house. As you can tell from our expressions, it's a tad cool up that way too.                                       

The cellar door is a wonderfully restored old double brick house that has been opened up centrally and is begging to be hired out for an intimate party of 50 or 60 guests as its just charming. Equally the bbq's and seating outside suggest its purpose was intended to cater for an eating and tasting crowd. The co-owner tells us though the insurance for such is prohibitively expensive making it a non-option. 

But we suspect another story. And boys and girls.........we didnt have to wait very long for the big reveal.As we began tasting the pinot gris and the chardonnays, our host kept referring to her "business partner" and it turns out the business partner is the ex-husband. Of itself no biggie, but as we proceeded to continue through the wines, our host joined us in front of the open fire, poured herself a glass of pinot noir (as it was 4pm after all!!!) and then thought it appropriate to show us photos of the ex that the new girlfriend had posted on her facebook page. 

The photos left me speechless and Siobhan became really really focused on the characteristics of the 2009 chardonnay!!!!!! DP wandered off purportedly to look at the art around the room and our host then banged on about the new girlfriend's phone being registered for use in the company car. The ex lives in one house with the new squeeze (presumably what is the former marital home just up the back of the property) and our host it seems lives in part of the Cellar Door Farmhouse, leading us to assume that perhaps this is why the plans for a wine and eating establishment at Curly Flat have gone awry for the moment. 

As sheer utter good luck and fortune would have it, two unsuspecting visitors stopped by for a tasting so we were rescued from any further bitter tales of woe. We were never so happy nor relieved to be rescued from such awkward and inappropriate conversation. She left us with the selection of reds telling us to help ourselves and went to see to her other customers. DP magically reappeared from her art appreciation viewing and Siobhan poured pinots all round. We went through lighter and then the heavier. DP wasn't a fan of any of the whites but then her palate was probably flattened by the Heathcote shiraz she has enjoyed at lunch. Siobhan and I love their chardonnays and as we enjoy a lighter red these days, their older pinot is just perfect. But we collectively decided that perhaps we will source out Curly Flat at Dan's and wait until the tension mellows at the winery by benefitting from some long time cellaring !!!!!!

So the next day, we had a long awaited catch up lunch with two wonderful colleagues of Siobhan, Ron and Peter and their respective partners Andrew and Matt. Siobhan and I had just a marvellous afternoon of wonderful conversation, easy easy enjoyment in their company and more than a few laughs. Matt and Pete arrived first and it was great to finally get together as they had moved north of the river some time ago, we had been slack in not having them over as they are virtually neighbours in nearby North Brunswick in the Greater Republic of Moreland!!! Not long after, Ron and Andrew arrived. I hate to confess folks but in the rush of lunch prep and serving I forgot to get their lovely faces in front of the camera. So you will all just have to imagine how good looking and handsome they all are!! 

Our voluptuous Christmas Mermaid!!

For those that have enjoyed Grand Final Day at Chez Gooch, you will appreciate Ron's considerably talents with the odd bit of cake decorating thematically coordinating  the participating team colours. Well good people, the man surpassed himself this time.

He arrived with a Dolly Varden cake (a cake using a doll as the centrepiece) with her long voluminous skirt made entirely out of cake and decorated completely with icing. But is does not end there. In keeping with the recent present Ron and Andrew brought us back from a recent soujourn to Hawaii, a chubby cheribic mermaid all glittery and glamourous holding a cocktail glass in one hand, the doll had a mermaid tail and she was resting on a ocean of waves and seashells, starfish and other ocean themed flotsum and jetsum. 

But again it does not end there. In a gesture of both beautiful thoughtfulness and utter utter hilarity, Ron had sheared of the doll's hair!!!!!! - Chemo Barbie had arrived in Thornbury via the Indian Ocean. 

And she was simply beautiful.

She took pride of place at the dinner table post lunch then was stripped of her skirting finery so that we all enjoyed a totally delicious and moist carrot and walnut cake under the cream cheese icing. Andrew had said that they thought about slicing a bit of her pert plastic left breast off and popping on a band aid....but though it might be taking it a tad too far. We loved the idea!!!

I forgot to get a pic of all around the dining room table...but that will just ensure that Siobhan and I will invite them all back to again enjoy a wonderful time with such wonderful men. To them we say, good luck with the house hunting, the ghastly City of Yarra Planning department and the trams........

May the "spirits" be with you all.

Kelly xxxx