Monday, 2 July 2012

Monday Muse and Moan

Tomorrow, I will find out more details about my breast cancer and the next step in the journey. I'm not expecting any shocking news, mainly details about type of cancer it is and if I need hormone treatment too along with the date for a chemotherapy appointment. My drain looks unlikely to be removed.

I had the enormous privilege of chatting informally to a Nurse from the Cancer Care Centre, her son is friend's with my niece. She kindly gave up her time to answer some questions and tell me how things will work, generally speaking.

Enlightening information. Relieving me of some stress. At least, I know I will not I hope incur out of pocket and extra expenses for the Chemotherapy at the Cancer Centre to which I have been referred . Forty minutes away I would have , even as a public patient, in a supposedly 'free public health system'.

In my new country town I'd have to pay too, if they were taking new patients. One less worry, but shocking none the less, that others in my situation are forced to pay up at a time when they are under considerable financial and physical stress and/or not able to work.

I am not complaining - whatever it takes we would pay. We have considerable expenses despite Private Health Insurance. I am grateful we had it, for 24yrs I have contributed, my parents years ahead of me . Our contributions probably evened out if we include my husband's cancer / tumour surgery 2 years ago and my BAHA (Bone anchored hearing aid) 2.5 yrs ago.

I understand , Medicare pays a pittance to Specialist Surgeons and Anaesthetists , they are not recognised for the hard yards , for years of specializing in noodles and studying - to give us a brighter future. It was my choice , not to wait it out in public system,and to have my choice of surgeon.

We don't have sick leave, or insurance - we work for ourselves, having done so for nearly 20 yrs. We will sort it out regardless.

Right now we are in limbo , we can't make plans for anything ... to go home, to go away as we planned for a few days or even to visit friends till we know the next steps. I can't drive and I have to wait for help to do lots of things.

We have been in Sydney for over 2 weeks , it is hard to fathom how fast things changed , it is barely 2.5wks ago that things came crashing down and life was interrupted. Interrupted immeasurably.

Our cat is being cared for my a kind friend , not too far away . She is confined inside to one room , since she discovered their canary ;-). I didn't hear the full story, though I doubt she was admiring the canary's sweet song or plumage .

Our free spirited puppy, DASHI , also in Sydney at my FIL's , who lives next door to a dairy and horses. She has been chained up 24/7 except when my husband drives over to walk her and give her freedom . She must be so confused, after all we have few boundaries on the farm and she was only in an enclosure at night.

Sam and Joel are oblivious to the real reasons for our extended holiday , they know I had an operation and have a drain {{moan}}. Sam is most interested in checking the drain measurements. They will see my scars eventually

It stretches, very neatly, left to right across my chest with about a 1.5 cm gap at 'breastbone' , in a wide V shape , extending up into my armpits . I have a clear waterproof dressing only across my bare chest , covered up of course. I can shower with slight assistance only now to dry due to restricted arm movements.

Yesterday, we quietly celebrated their 6th birthday with some early morning, arcade game free playing and then Aqua golf with their cousins and their 19th brother even joined us. There was cake too, much later than I would have prefered ...long story but everyone was too engrossed in the Block auction to come and sing Happy Birthday to two little boys waiting . In a pique , I lit the candles and we started to sing anyway ...

I still felt such a terrible mother not being able to make their cake , my mother did it , they were still happy. I chose the decorations - plain blue icing with m & m's and Skylanders atop, easy as .

I feel sad I wasn't able to buy them anything other a new Skylanders shirt (yes more Skylanders - purchased a month ago) which we wrapped in recycled paper (from my gift), as they ate breakfast. I wasn't prepared this year. I wanted to fill a room with balloons but it didn't happen. I wanted more surprises still have a big one coming since I won a pack of Disney Pixar / DVD movies on twitter. That will make it all awesome !

My little guys asked for nothing else, not even that first present - such precious little boys who go with the flow - though they did figure out quickly, now they were six , Nanny had better give them the surprise she had been promising .Off they ran and you guessed it more Skylanders.

They were ecstatic , perhaps I couldn't ask for more , I was just feeling the total lack of control.They don't want for much anyway, toys are not in short supply in our house. It was just my woes.

Today, a few friends from our former playgroup and church came for a visit for more cake and a few more Skylanders . It was lovely to see them. The 10 kids, including my twins, nephew and 7 others - 2,2, 5,5,5,6,6  playing hide n seek , bust the balloon and trampolining .They all got on well together in my brother's backyard. Simple, with no fuss, no cake pops either *sob*

I feel fit and well but mostly frustrated .Dressing is a challenge because I can't tolerate the pressure of pulling a t shirt even a singlet under my left arm, and then over my head to right arm.  I had to go out and buy new tops and a new button up shirt. I have clothes at home but never thought it would be so painful. Today, was the first day I didn't take Endone. I could have just I didn't.

Sleeping in one position raised on my back is hard - I'm managing , I still wake my poor husband to help me adjust pillows or for water because I'm too uncomfortable or in pain in the middle of the night.

I feel fragile tonight that time of month magnifies everything out of proportion . As much as I know facing my fears people helps, it feels awkward talking about the diagnosis and the treatment when it is me. I really don't mind people asking but I feel like withdrawing from the attention. It isn't about attention. I dipped my fingers into the BCNA forum too, for the harder questions.

Onwards to tomorrow.