Friday, March 14, 2014

the sky is not falling but my bank balance is


THE STORY SO FAR: because my heel was sore, I had a mammogram [as you do]. 2 different lots of breast cancer were found very, very, very early. What follows is about the heel, health insurance and the costs of treatments generally.


After a particularly crappy 3 months TO had been looking forward to a few months' working only 30 hours a fortnight. Suddenly, on 27 December she came home to learn that not only had I had a mammogram without telling her, the GP had rung less than an hour after I got home from the mammogram, flapping about making an appointment to see a breast surgeon.

What TO then had to deal with for too long [i.e. over the holiday period] was too much general knowledge but not enough specific information about ME or MY cancer.
What she really needed was to spill her guts /vent about this [plus a whole heap of other ongoing stresses] to someone neutral like a counsellor but, holiday periods being what they are, one could not be found.

The "too much knowledge" bit begins with a wee snippet about lymph systems. Think "lymph system" think "crap catcher".

As an analogy, let's say we have lymph nodes [gully traps] in our armpits [amongst other places]. Once toxic stuff [like lead paint] hits the gully trap, it all heads straight for a natural waterway somewhere. [Eat more fish…. it's healthy!]

The lymph system to which the left breast connects directly is a bigger system – if one must find breast cancer one hopes to catch it early, and in the right breast. Of course, if someone does find themselves with cancer in the left breast [as I did], it is not a good idea to have a partner who catastrophises].

A rather long and tedious journey down the cancer treatment path lay ahead of us both. It's nice to have a partner with whom one can discuss things, or to whom one can whinge – but two partners discussing things does not necessarily involve solutions or miracles, it's often just venting and should not be taken to be an obligation or expectation.

TO, when it comes to other people's medical issues, does not know how to ditch the God Complex. If someone is unwell she feels personally responsible for the illness, and for finding solutions. Late last year she coached one of her old school mates through the death of a 41 year old son. TO had been telling him for ages to do something about his reflux, but unfortunately, R did not do anything until it was way too late. This was very draining and distressing for all concerned, and just one of the things TO was dealing with.

Aunty has had a series of medical dramas. She has had a series of hospitalisations to go along with the dramas. Although TO has often been right about what to do next, even when specialists and experts are scratching their heads TO cannot let go of the notion that she should know what to do. It is only because I know her that I won't accuse her of arrogance but there are times I'm tempted to beat her repeatedly on the head with a heavy pan.

TO's motto, I think, might be "bite off more than you can chew then chew like crazy". The more tired she gets, the faster and more frantic she becomes about the things she "has" to do. If her car was running low on petrol she would speed up, hoping to get "there" before she runs out of fuel.

TO "knew" that if I did not get my foot fixed now I never would. She pushed me to get it done straight away so I might be well enough for at least one week of her holidays in April. So, there we were at the starting line, the gun went off and within 2 seconds TO was way in front while I slowly brought up the rear.

Over Christmas we made a three day dash to Jindera to see TO's Mum, then came back home.

Briefly, next jobs were
-         do lots of running around and stuff for Aunty
-         visit breast surgeon of choice
-         go to clayton for stereotactic biopsies [and insertion of titanium clips]
-         visit surgeon for path results from biopsies
-         decide what sort of breast surgery would be appropriate
-         x-ray guided hook wire attachment to titanium clips
-         the breast surgery
-         the path results from the breast surgery
-         first visit to orthopaedic surgeon about the foot
-         the oops-we-need-an-extra-bit-chopped-out discussion about more breast surgery
-         the extra breast surgery
-         the foot surgery
-         the path results for the extra breast surgery

and so on, etcetera and so forth ad nauseum and infinitum.

Through the latter stages of this, there was a lot of the daily grind to be taken care of [by the only household member who was mobile and did not need to keep their leg elevated.]

TO got tired.


I'm glad TO was with me for my first appointment with the breast surgeon. I thought I was calm, accepting and perfectly rational about the whole business, but did not hear a word the surgeon said beyond "bilateral mastectomy". To be honest, even if I had heard what she was saying, I would not have had any idea what it meant.

As I tried to recall the content of the discussion, a loop was playing in my mind of Whoopi Goldberg trying to catch the lyrics of Jumpin Jack Flash, saying "Mick, Mick, Mick… speak English!"

While TO did all the "two legs good, one leg useless" household stuff with no one but a floor manager to help, what else was there for me to do but stare catatonically at a pc screen trying to discern the deeper and more profound meanings of breast cancer terminology?
No matter how calm or accepting one is, one still hopes to know what is happening "tomorrow". How would all of this affect my self-image? Would breast conservation surgery and breast reconstruction be an issue? To be honest, if I had money to waste on vanity, I would rather use it to remove acne scars. But I was not let off the thinking hook - types of surgery and so forth were still an issue because everything has side effects.

One thing I found most intriguing is that
  • the original imaging report from my mammogram said lesion 1 was "highly suspicious for high grade DCIS" [i.e. I should panic]
  • pathology results from my first lot of biopsies said lesion 1 was only ADH [effectively bugger all]
  • second lot of pathology reports after my first lot of surgery said lesion 1 was invasive cancer…

Forget lesion two – can you see a pattern emerging here with lesion 1? This pathology stuff is not quite an exact science. I guess what "they" find depends to some extent on what bits they take and then examine. We are talking about margins as small as 2 mm, here.

How long does it take one rogue cancer cell to grow enough before it is visible on a mammogram? The answer to this and a million other questions seems to be "it varies from one person to another…"


I did discover before surgery that there are extra comfy undergarments available, but after a week and half of searching still had no idea where to find them. I was given one – free of charge - the day after surgery. We were in the middle of a disgusting heatwave, and after a few hours on the phone I managed to track down some more. It cost me $136.00 for the last two pair in my size available through Myer in Victoria. I will never say horrible things about Myer again.

Finally stumbled on the web address and requested a specific booklet from a series. Received the entire kit [which is bigger than the tax act] full of booklets, brochures and DVDs. All the stuff I'd been trying to work out was covered in the kit and could have saved me a lot of searching.
The stuff in the kit was logical, detailed enough without being too detailed, and included a 50% discount card for those undergarments I had just spent my life savings on. Sometimes, my timing sucks.


Naturally, a lot of questions remain.

How does private health insurance stack up against none, or against a health care card?
Where should we go for more info or what other things should we consider before surgery [whether breast surgery or heel surgery]?
How much have I spent so far, and could I have saved some of this expense had I been better informed sooner?
Just how much has the great promise of Gough's original medibank system been eroded?

and more…


  1. Oh wow! I'm sorry to hear about the cancer FC. I'm not sure what "invasive" cancer means but it does not sound good. How can a cancer not be invasive though? So when do you go back for the next surgery and have you made any decisions about the kind of surgery? I always thought that if I had breast cancer and had to have a mastectomy I would not rebuild but then I live alone and breasts have never been important to me. That's really beside the point though isn't it; I hope whatever treatment you choose goes well enough for you. Take care!

    1. TY for your kind thoughts Rubye... things are going well. In later posts I'll talk about the type of treatment I chose, but your question about "invasive" cancer is a good one.

      To grossly oversimplify, let's say a cancer is a mutated cell. One form of breast cancer DCIS [ductal carcinoma in situ] is one or more mutated cells confined to one spot e.g. a specific milk duct. When some mutated cells multiply enough to break through the walls of their birthplace then we can say they invade /destroy other bits of local [breast] tissue. Therefore breast cancers can be said to range in type and size. Treatment options usually reflect type and grade of cancer found.
      If a cancer is not just locally invasive but sends mutated cells to other tissue/organs distant from the original site, only then is it metastatic cancer. It means the cancer has been around for a very long time - possibly too long because it is "invading" the rest of the body. This is why I am so very lucky to have found the tiny bit of cancer early.

  2. Poor love. You really have been through the wringer. I am cross that I did not revisit your blog the next day. You are fortunate to have a supportive partner. I hate to think of people going through such things on their own.

    After I had surgery and ended up over $1000 out of pocket in spite of high private cover, I wished I had gone public. I would have had to wait, but it was nothing life threatening or painful. If it is life threatening, I think I would still go public.

    I hope yours is a good and speedy recovery.

    1. TY Andrew. The point about people going through things on their own is a point with many aspects to it. If we were alone would we even bother fighting? I guess it depends on the individual.

      Loneliness is also an issue relevant to Aunty's predicament. People were never really designed to live for an inordinately long time but now so many bits and pieces can be repaired and replaced that as soon as one thing is fixed another problem emerges. At every stage we try to assess current/potential quality of life. Again, I often wonder if Aunty just gets tired of it all a little more frequently than she lets on. We hardly set out with the aim of "helping" her live longer simply for the sake of it - but at least she did not join the hundreds of elderly people who die alone in their Gold Coast apartments.

      I'm sure my own recovery will continue at its present, satisfying pace, though it will never be speedy enough for She Who Wants it Done Now!

    2. I was here re-reading FC since I just read your post about your foot and I'm trying to figure out how the cancer tx has gone since you mentioned it being hard to get along due to the radiation.

      Anyway, for me, the thing about being ill and being alone is that I feel it definitely has its benefits for someone who thinks the way I do. I read this forum on liver disease support a lot and there are so many caregivers that dictate the tx for their loved one. For example, he may say he does not want to go to the ER because of such and such but she calls an ambulance anyway with total disregard for his reasoning. I do not see this as the case with you and TO at all btw, but there are some people who want/need their ill loved one to live on regardless of how much they may suffer in the process because they value life more than dignity or caring about another's suffering.