~Where Was I ??~

Update on Mum.

The tumour she had was a rare non typical breast cancer.

At first it was expected that she would need the tumour removed, then radiation for 7 weeks.

After removing the tumour further cancer cells were found.

The surgeon advised that a mastectomy would be the best option.

She has had this today, this morning.

We had tea together last night.

Our little family.

Our big boy was asleep after night shift so missed it unfortunately.

This is difficult for the boys, to know what to say, or what to do, or how to be.

I mean, we don't really talk about Grandmas boobs, like, ever.

Of all people for this to happen to.

My mother is one of the purest souls you are ever likely to meet.
Not a nasty bone in her body.

Not that I would wish it on anyone, but gee.

Surgery went to plan I am told, and she is sleeping now xx

~~~~~~~~~~

Barney and I had our trip to Sydney to see the Wizard.

We didn't arrive until 9.30pm, kinda scary for a small town girl arriving in Sydney and finding a train to the city.
Which we handled like pro's ;)
I said "Look at us all looking like we know what we are doing"

The day had been mega ultra stressful leading up to the flight

Courier issues. Yep. Say no more.

I had booked a hotel literally a stones throw from where our doctor is when he is in Sydney.

Barney went first this time.

He really should have been reviewed earlier.

I knew this.

None of this is free though.

So anyway he has 3 new prescriptions to start on.

Riamet, Zithromax and Triprim. On top of Doxy and Rifampicin.

I went next (last time I went first and I was in shock/a zombie for Barneys appointment, it was too much for me).

I am technically worse than I was 12 months ago.
The meds are shaking things up but not killing them.

I was recommended to start Plaquenil, Riamet, Zithromax and Triprim (each to be introduced slowly). On top of Doxy.

We also need TOX-ease so that we can cope with the drugs.
5 grams of vitamin C daily, and a few others (NAC, magnesium etc).

We both definitely have POTS (Postural orthostatic tachycardia syndrome)
Well no shit, I have been saying this for years!
For this we need compression socks to be worn every day.
Salt.
2 litres of water minimum every day.

It is an aggressive treatment regime but it should see faster progress.

When we got home, I started getting prices for the pills.

Riamet is $88 per week - EACH.
Zithromax is going to be $90 per month - EACH.
Triprim is around $10 per week.
Doxy is $38 for a few weeks for me, $6 for Barney (whoop-de-doo a PBS script).
Rifampicin is $68 + postage for 5 weeks.
Plaquenil is around $38 (not sure how long it lasts).
TOX-ease was $98 with postage for a bottle.

I am already taking 5 other scripts for a variety of shit.
Some of it thought to be caused by the Lyme and Co.

So I have had to ask for an alternative to the Riamet for me.
It's just not do-able.
So I am going to be taking Artimisinin (spell, too lazy to look it up).
I have ordered this from iHerb in USA.
Hopefully it will arrive soon.

Lovely surprise - checked our statement and Medicare only covered $70 each of our appointment.
So I'm about $500 down on that, plus accommodation and flights etc...
Well over $1000 spent already, and have only bought Riamet x 2, Compression socks (I shopped around, but Barney is a little trickier to fit), Artimisinin, Vitamin C, TOX-ease, more Doxy....
Thinking i might need to go to Mexico or something to get all of this stuff :(

People actually wonder why I work.

We would not survive if I didn't.

We need to review it all in 3 months.

It appears to be affecting Barney, which means it's working.
It has knocked him flat.
He is cactus.
Fingers crossed it works quickly for him.

Lots more to write, but I will save it for another day

xx~G~xx