Tuesday, 11 March 2014

and breathe ...

Thank you, for all the well wishes and kind thoughts. In time I will reply. I'm deeply touched by the outpouring of concern and prayers.I received  messages and emails from people saying they had been following my blog and I have been in their thoughts.

My WIFI faith is important to me.

 I'm feeling a bit more at ease - just not holding my breath for any absolute answers I wanted yesterday - any time soon.

Nothing can be predicted and the unknown quantity is still frightening. I've spent the last 4 days (Thurs, Fri, Mon & Tuesday) in town having scans or ultrasounds & blood tests and then waiting around 2-3hrs to get results.

I must be glowing from all the radiation. The imaging place puts lovely red stickers on the envelops to say they use ULTRA LOW DOSE CT. You're welcome.

I filled in time, in between the waiting, using free WIFI at library and going to one son's classroom to help with reading etc..

Seven year olds are good medicine. I also love that my sons are not shy about giving me a hug at school and then asking for $1 to spend (how could I refuse) or do I have a spare hat in the car ...Sorry I forgot.

They keep me grounded and laughing...all the way to the bank. Then it cost me $23 at the school for various things. (My oldest son messages me by text or on Facebook to transfer money, to check-in at the airport for him & his friend, pay for the youth hostel ...so I feel needed.)

One of my favourite verses.

The Radiographer Drs cannot be100% confident about the lump/lesion near my sternal notch (neck) . The Ultrasound report from Friday - said it likely to be a neurofibroma or possibly a lymph node - so they recommended a MRI. [I open everything within 60secs of exiting the Imaging premises - do you?)

Hopefully, when I see Oncology DRs they can get that organised ASAP. I can't feel any lump because it is retro-sternal (So inside ? the chest cavity near my neck - not even sure I wish they could tattoo a pic on me) . I have weird pains anyway because of the mastectomy and tightness across my chest, not always just intermittent.

The Liver / Abdominal ultrasound didn't show much, as my surgeon predicted, and it only found one cyst ? as in one of the 2 spots +1 cyst, the other 2 'whatevers' were not identified yesterday. So it is sort of a relief. 

When you are treated for cancer you have different doctors for different things , as a public patient they practice case management and a team of doctors and health professionals make decisions regarding treatment options at a combined meeting ; what chemo you have, if you need radiation or not and other investigations. My surgeon / surgery was private  both for breast cancer and MPNST (Same Same), he has little to do with this case management -as far as I know.

Sometimes , I have felt my care was a little disjointed having a private surgeon and public chemotherapy at two different cancer care centres (it was my choice to have weekly chemo close to home in the country Oncology Centre). My Breast Cancer Support Nurse (who works closely with McGrath's Nurse) has been a tremendous advocate for me.

I have yet to speak to the Oncology doctors (They manage the Breast Cancer Chemo/Herceptin and followup - it's happening Thursday 13th.

I don't feel like pushing things as urgently now. I have another appointment with a Radiation Oncologist Professor (from Orange) next Tuesday 17th for his opinion on management of the Malignant Peripheral Nerve Sheath tumour and whether I will benefit from radiation therapy; the Surgeon doesn't think so. Though , I trust his judgement and expertise , it doesn't hurt to ask.

 I have also had several blood tests to check on blood pathology as per my Surgeon and GP. It only showed that was existing - either I liked DRINKING a lot in the past or I've had cancer because my liver function tests are abnormal (but have stayed stable for 18 months). The GP I saw today (4th in as many days) asked if I was drinker (nicely ..then said we know you had cancer so that shows this too).

The Porta-cath (like a Central line) I had for intravenous chemotherapy is staying put for now till I am NED (no evidence of disease).

Otherwise , apart from very disruptive sleep - I feel well , in the daytime I feel positive and in the dark of night - I lie awake fearing my tomorrows - definitely crazy , who isn't ?


When I had the CT a 'machine voice' told me when to breathe in and hold and breathe and they had a button that lit up too . I found it a little funny.