The C word and marking time.

My life is marked with big medical events on the calendar ...but at the same time not.

The perils of being at the mercy of public health system. (I might add a great system when it works in your favour. The local base hospital were prompt to treat and drain my haematoma , by ultrasound -twice this week.I am very grateful)


Yesterday, one Sydney hospital called to organise my PET scan - first I needed the dates for when my radiation would be starting and finishing. The PET scan needs to be 12wks after I finish radiotherapy - though the Radiation oncologist wanted me to have it in 2.5 months time ???

Um *$#@ !

I called the Radiation unit where I have radiation [2hrs away] - no dates yet, no deal and instead of 4wks I was told - it might actually be 

6wks before I start, 

+ 6-7wks of radiation - 

add 12wks recommended wait after I finish radiation (due to inflammation)

 =25wks

They weren't able to give me much information , too early in the process.
 
So ? almost 6 months before I can get the PET scan.
Um *$#@ ! , *$#@ !, *$#@ !

It will be eight months since I was diagnosed, 7 months since the Chest CT showed things we weren't expecting ...the nodules on my lungs and lesion in my neck ? maybe my liver. 

The PET is supposed to monitor them and check for growth or NOT; it probably can't tell if Breast cancer or Sarcoma related ?

I re-called the PET suite, while I was on hold they rang one doctor (Not THE Dr I saw 2 weeks ago-she is away) and he said they could do it 6wks after I finish radiation.The lovely lady was 'confused' and is going to follow it up further.

Still till long.
Still too scary.
In six months a lot can happen.
I don't even want to think about it.


Today's quote

“The best thing about the future is that it comes one day at a time.”
― Abraham Lincoln

Enjoy each day and dwell not so much on tomorrow - because if I worry think too far ahead my heart will break. !

So I am taking things one day at a time, it is the logical thing to do and worrying isn't going to hasten the process.

Cancer is a process, like all disease and illnesses.

In cancer we're always marking time , making decisions or being subject to decisions.
There are choices to be made, different treatments, many impossible possible options, with breast cancer and especially now with sarcomas. Different doctors have their own demarcation lines. It sucks they can't agree.

Waiting is *$#@ !* it is difficult to not let things get to me. 
Cancer (twice in 21 months) is a haunting situation; it feels like I will never ever relax again.

In happier news in the last few days many kind words have uplifted me, the Nurses at oncology, a few friends and church acquaintances, receiving in the mail :a daily devotional book from my SIL, several card (from the same friend) and a little peaceful thoughts kit and purple butterfly ring from a lovely blogging friend.

 ♥

Bracing myself for what comes next - update.

On Friday I noticed my left thigh seemed to be more swollen. I wondered if it could have been related to another trip to Sydney on Thursday. This time my husband drove so we could attend a funeral of my dear friend's mum - about 9-10hrs return. It got worse over the weekend despite massage.

I wish I'd thought to wrestle slip on my compression [running] pants. Today, I chased around trying to get an ultrasound since I'd self diagnosed a seroma (accumulated fluid) ,much easier to deal with compared to the alternative an infection/abscess or something else - though it was unlikely.

The GP couldn't get me an appointment at either of the two local imaging centres , so he said present to the hospital.

Thankfully, I had my iPad and 2048 and Sudoku to pass the waiting time. My mobile wifi refused to connect.

 I'm grateful I got the ultrasound because I would have cracked it I don't want anything to delay the start of the radiotherapy. My appointment with the Professor -Radiation Oncology is tomorrow to get that rolling.

As it was a seroma (and I was a private patient for my surgery in Sydney), the Dr rang my surgeon in Sydney, out of courtesy, for advice. I need to have the accumulated fluid [seroma] drained by a needle and syringe aspirated under guided ultrasound tomorrow at 9.45am, at the hospital.

It took a while to get everything sorted and then I was quite stressed because I had to be home to meet my boys at the school bus. I made it just in time.

Bracing myself for what comes next because I might need to have it done a few times, I hope it sounds worse than it actually is ?
Fun times.

EDIT - Well we were wrong - the fluid was a haematoma and a collection of blood not serous fluid - about 70mls was aspirated by a bloody big 19 gauge needle and syringe. It is still a bit swollen looking but swelling has reduced. The worse part was the local anaesthetic injection. It is now sorer than before but I'm sucking it up and going to paddle today anyway.

I am now (in the next week or so) in waiting, for the call to give me an appointment for Radiation treatment planning.

  -♥