Friday, 4 April 2014

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.

 

Comments (11)

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Oh gosh Trish, all that waiting and uncertainty, not to mention all the differences of opinions.... Making the most of one day at a time is a great way to look at. As always thoughts are with you and sending lots of fairy wishes and butterfly kisses your way
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1 reply · active 570 weeks ago
Thank you , the lovely lady at Westmead has booked scan with Drs ok for Friday 13th June - I not let that date get to me.
Can we start a campaign to raise money to go private?? I know at least 100 bloggers that would give $50 to help, including and especially me... I'm not trying to throw money but I would NOT want to wait either... or am I quite clueless to the system? Just makes me so mad because if something can be done to make your problems go away then I want them DONE!
I am serious Trish, I will start it, just let me know. xxxx
1 reply · active 570 weeks ago
It is ok , they are going to do the PET scan on FRiday June 13th - my lucky day because they need to check lungs not my leg. So radiation won't affect this - if my leg lights up like a Christmas tree so be it. Just not my lungs.
You are so right, when the public medical system works, it really works well; but there seems to be so much uncertainty because you are relying on individuals to jockey you through the system. It's so frustrating, and the last thing you need to be worrying about. Glad you are getting the PET done on the day that you want it done. Thinking of you xx
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Waiting is horrible, especially in a situation like this, and it is doubly hard when the specialists and health providers can't seem to agree on the time line. I'm pleased you can see some positive blessings throughout what is a completely sucky situation. Love and blessings to you and your lovely family xx
Urgh! All this waiting and uncertainty. It certainly doesn't help things along, does it? I think you've hit the nail on the head with all this, you just have to take one day at a time. That's a far better option than worrying yourself sick and wasting precious energy about what will happen and when. One thing is certain, all these things will come to pass. The trick now is to fill each day with happy things, because time flies by faster when you're having fun! x
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Waiting is just the worst. I hope things hurry along for you Trish. So lovely that you have received some lovely things though, that is lovely.
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The waiting would be the worst, Trish, trying to keep your mind from running off in all directions. Sending you lots of hugs, positive thoughts and prayers. xxx
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DeepFriedFruit · 570 weeks ago

I really wish there was a system where you had a "manager". Like a "wellness manager" who did all the coordinating and all the bookings, and all the liaison, paperwork etc for you. I just feel it must be so hard to be the person who is battling the disease and also having to field the frustrations of the calls, the bookings, the coordination etc. Wouldn't it be nice to have the public system appoint someone who is in charge of you and did all this time management stuff for you?
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DeepFriedFruit · 570 weeks ago

PS The reason I say that is because I have watched my mum, father-in-law, aunt and a friend all go through it and it was hard to focus on being well when there was so many frustrations in managing the process. It bothers me. It bothers me a lot. LOL. So I can only imagine just how much it bothers you.
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