Are we ever really cancer free ? ..the buts and ifs

It's here.
Not , less than 10 days to Christmas.
I feel anxious, though I have no reason to be.
My scans are stable , except they have yet to scan my thigh where the malignant tumour MPNST was.
I will be asking for that to happen.

My husband and I head will travel 400kms to Sydney to see the Radiaiton oncologist for 6 monthly follow-up appointments, tomorrow, with Radiation Oncologist at The Crown Princess Mary Cancer Care Centre Westmead (what a mouthful)

We are so thankful for the Oncologists and other medical Drs who kept (keep) us ticking. This morning I read an article that nails it and helped me understand some of my own feelings.



This is a snippet.

I would always figure out what needed to be done and then did the best I could to move on, happy and worry-free. But now, not so much. I worry about my health, along with every ache and pain. I think about all the possibilities of what could attack my body. I think about my kids, my hubby, and my family. I think about cancer finding its way back into my life. Although I am a strong person and live a healthy and active lifestyle, I feel physically vulnerable all the time. What if the cancer never left? I sometimes fear that it will never be gone. Is anyone ever truly "cancer-free?"

I feel more emotionally vulnerable. That gut wrenching feeling is with me every day. Little aches and pains send subconscious shivers through my soul. I can't brush the worry off.

No amount of therapy would help because the fear is intense. I deal with it as best I can. I keep busy.

But the moment you are sent home with your "get out of jail free" card, you are alone, unsupported, and left to deal with the after effects no one really warns you about. No one tells you that you will come down from that adrenaline rush to a place where you don't know what you feel, think or how to move forward in your life.

http://www.ihadcancer.com/h3-blog/07-12-2014/Are-We-Ever-Really-Cancer-Free

I hope that it may be of some help to you, to understand too.

♥

I Touch Myself Project

I started to see news of this project featuring Chrissy Amphlett's “I Touch Myself” filtering through my Facebook feed last night.
It is too close to my heart. It stopped me in my tracks.

• Talking to strangers or people in my real life about my boobs or lack there of. I feel a bit creeped out weird about what I overshare ; things I wouldn't have dare previously said out loud  to people about in real life .

Right now I have a pain in heart and a tear in my eye. I'm living in fear.

As Chrissie rode out on a horse called Music , she left us this legacy (sorry Willie) when she passed away almost a year ago

Early detection is vital.
My friend the dear Mrs Woog is an ambassador for

I Touch Myself Project.

Go ahead and check it out , then check yourself I'll wait.

Not sure how ?

One of the reasons I am blogging about my breast cancer journey is to raise and spread awareness. I know that reminding people to check their breasts could save their life.



Right now - I have a tortuous and terrifying 8wks wait (for a PET SCAN to see if the nodules found recently on my lungs are something to worry about - related to Breast cancer (or my MPNST Sarcoma) or nothing. They are too small right now to biopsy . The fear is crippling me. I wouldn't wish it on anyone - so please take note and touch yourself.


Touching yourself is healthy habit that should be as much a part of your daily routine, like showering, dressing and looking in the mirror. 

You don't need to wait for a special day, check your breasts wherever and whenever works for you but do it regularly. A minimum of monthly is recommended.


I was always a little Breast Aware but even so I was slack and hap hazard about checking.
I wasn't aware of all the changes to look for ...it isn't just a lump.

Most breast changes aren’t due to cancer - but if you find a change that is unusual for you, see your GP to make sure.

I had 2-3 symptoms at diagnosis - though my breasts were always lumpy. I found this website which tell you what to look for

A new lump or lumpiness, especially if it's only in one breast. A change in the size or shape of your breast. A change to the nipple such as crusting, ulcer, redness or inversion. A nipple discharge that occurs without squeezing A change in the skin of your breast such as redness or dimpling. An unusual pain that doesn't go away.

I had 2-3 symptoms at diagnosis - pain, discharge on squeezing (because I had pain) and my breasts were always kind of lumpy. I did see my GP immediately, both times I had nipple discharge. May 2011 it wasn't breast cancer (that I know).

How do you reduce your risks ? 

How do you calculate your risk based on evidence ?
Calculator

 I didn't know that an inherited faulty gene only accounts for 5% of all breast cancers. Even then breast cancer is so common that it need not be a faulty inherited gene that causes BC within the same family.

I thought it couldn't happen to me , though I've had several mammograms and ultrasounds despite that misguided belief...just for reassurance.


So have you felt yourself today ...you can never be too busy !


 I'm sorry if this makes your uncomfortable !

Watch the video and share it with all the women (and men) you know.

Thanks to Allie's suggestion - yes there is an app for that .

a fun one - Your man reminder

http://www.ibreastcheck.com/  in App store and Android.

  ♥

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.

 ♥