Tuesday 25 March 2014

Cancer is a bitch Chronicles - MPNST update.

Yesterday, I flew to Sydney to get another opinion from another professional about MPNST. Malignant Peripheral Nerve Sheath tumour.

What do they have in store for me today ? 

I wondered over and over.
The in/out bound flight was a bit unsettling, the weather was diabolical and you couldn't see anything for the clouds. No silver linings on the horizon.

Some Sydney areas had their heaviest daily rainfall total in over a year, recorded in just under an hour - experiencing significant flash flooding . I was fortunate I allowed extra time because I couldn't leave the train station for 45 mins. I was quite stressed about being on time. The rain was torrential*.

Optimism Index:
Mixed emotions, moderate anxiety with a chance of scattered bursts of sad.

Luckily, I had brought the black not pink umbrella and one that was easy to transport.

So I had to “go for it” and tough the rain. As I walked to the hospital, the rain seemed to get worse again, water seeping into my boots , juggling my bag and suitcase. There was little time to dance in the rain.

As it was, I had to wait an hour before I could see Senior Registrar. Then another lonely wait while they reviewed my scans etc and then finally I saw The Radiation Oncologist . After consultation with the Sarcoma team , a multi-disciplinary range of specialist doctors, committed to the fight cancer metes out - she agrees I do need radiotherapy to my thigh - to help prevent recurrence. Since further surgery to my thigh to obtain clean margins (2-5cm of normal tissue) is not viable - it would be catastrophic or result in extensive rehabilitation.

Dr S was confident the local Radiation Centre and Oncologist  (2hrs away) could prescribe and coordinate the course of my radiotherapy  treatment - a bit closer to home. She will support me on an ongoing basis and book me for PET scans as necessary. (As she has done my husband for 4 years).

The other areas of concern , the equivocal neck lesion and my 5mm lung nodules they can't decide a treatment plan for until scans show changes or growth or rule them out. The nodules are just too small (need to be 1cm=10mm) and the lesion is in a tricky location to biopsy. She felt to involve more doctors at this stage was impractical ? unnecessary. I am just not 100% sure.

I must pray hard relax and just accept things in the interim and try not to worry. I will have a PET scan in 3 months and a chest CT

So - I wait till next Tuesday to know what happens next. I have met the local Radiation Oncologist and he was a nice fellow. Getting my treatment plan going may take a few weeks.

I'm not terrified of the radiation only the logistics of being away from my family; the emotional and financial burden for 5-6 wks. I will most likely be away 4-5 days a week because driving 4-5hrs round trip each day plus appointment & waiting time- will be difficult and more physically demanding not to mention the vehicular fuel thirst.

I only know what radiation feels like from my husband. Vastly different than after they inject toxic chemicals into the body ; thankfully chemo was not recommended. That is one less huge worry.

The flight home was delayed 2 hrs due to the severe storms. It was a turbulent, unpleasant ride, in a too small plane (40 seats ?), at night - no wonder they gave free whine wine. I was never so glad to touch down at around 10pm.

*Put those figures into perspective,  rainfall rates in excess of five mm in 10 minutes can be enough for flash flooding...I saw the news later -cars floating down the street (not where I was).

I still love this song...it blew my mind with the rain and all.

Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?
What if trials of this life
Are Your mercies in disguise?

I am still praying for healing and will seek it out...as well as a pink umbrella. I just found out Daiso sells them.