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