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.

  -♥

Today - the wall !

I know I don't have to be cheerful and positive all the time.
Honestly, it's really sucking at the moment.

Today is 5 weeks since I saw my GP about my suspicious symptoms.
Today is 4 weeks since I had my mammogram and U/S - when I knew positively that the news would not be good.

The staff were too nice, too apologetic and over explaining the need for extra images, different position and long time waiting for the Dr to review them -in case I needed more. Explaining gently - I may get called back for a biopsy ...telling me not to worry it is normal ...Well - no I didn't doubt for a minute it was !

Today is 3 weeks since a double mastectomy and axillary (armpit lymph nodes) clearance (Left). I still have my drain three weeks post op. It is annoying and painful at times mostly just uncomfortable ; finally bearable enough not to need as much pain relief. I've swallowed a gutful.

Today is 2 weeks since I cut my hair quite short. I am okay with that and the prospect of going bald I've yet to get my head around ...pun not really intended.

Today, I had a port a cath implanted, beneath the skin in my chest wall and below my right collarbone - which is the start of phase two in the breast cancer marathon . It is going to provide long term intravenous access for the chemotherapy and much longer targeted therapy. It is the right my choice but it hurts.

Later, in between infusions I hopefully won't know the port a cath is there, except for a raised bump.

The local anaesthetic has worn off - the pain, right now, is far worse than I expected. In both my neck and upper chest - they cut , poked , prodded it into position - it will ease up in time. Woe is me.

On a scale of 1to10 - maybe 8-9 . I am so glad I still have the oral Endone to give me some relief. It really hasn't eased it completely. I am trying to distract myself.

Sometimes I feel ok , others not - about this major interruption to our life. I look down where my breasts used to be and I honestly can't remember what they looked like ...well I barely managed a B cup. I don't feel too affected by this itty bitty bit.

Tomorrow, is the BIG day when I meet the Medical oncologist at the Cancer care centre - find out when I start chemotherapy , the details and the long list of side effects  that already terrify me and the big picture. It seems crazy to say I'm both looking forward to it and wishing it NEVER comes.


It will bring a sense of order and maybe control but today is not a good day.

I found out recently another mum from our former playgroup , a similar age to me, was diagnosed with Breast cancer a month prior to me. She has just started Chemo (1st dose) and is having a rough time.

Yesterday, at a 6th birthday party - other former playgroup friends in common , commented how odd is was that there were 2 of us in a group of maybe 20. It really isn't that odd because 1 in 8 will be diagnosed with Breast cancer.

Someone else, close to me, told they think her mother has breast cancer . Her mother lives 4000Km+ away. Tomorrow - her mother will find out more exactly the details. My eyes started to tear up upon hearing this news too.

Tomorrow is a new day and hopefully a better one.
♥

Ok , now ... moving on

The last 5 days have been nerve wracking, to say the least. Last Thursday my husband had another round of followup - CT scans of his head, temporal regions and a chest CT.

I know I live by faith not fear , however it doesn't make us immune to illness, stress, depression and cancer.

We knew the scans were coming and it is only after M has them that the worry sets in like concrete. Hard and heavy.

It has almost been 17 months since M finished his radiation therapy. We planned our road trip around his three monthly appointments. M is well despite troublesome headaches; they attribute mostly to stress.

Today, we were SO relieved that there is no evidence of recurrent disease where his tumour was and no local recurrence in his chest etc. (I love this image a friend posted of fireworks on my Facebook)

As we sat waiting in the newly renamed, Crown Princess Mary Cancer Care Centre - try saying that in one breath , I knew that everyone was there, like us, hoping for good news. A sea of quiet sombre faces.

A young mother was seated nearby bearing tubing, hanging from her clothing about the waist and a dark fluid filled drainage vac/bag. She was there with 2 little boys and her husband.I felt teary.Most of the others were older folks. Lots of bald heads, you try not to look, at as you walk the corridors ... men and women, young and old. No one is immune to the scourge of cancer.

Fortunately we walked out with good news.M queued up to book more appointments for 3 and 6 months time. It is a blessed relief to be moving on and making those appointments in a way.

We then went upstairs to book a different, PET, scan for February. There was a lady in the waiting room who overheard my hub mention his two Drs names to the receptionist booking his appointment. The lady mentioned they were her husband's Drs and he was having his scan right then.

She continued taking , without us really asking much ; He was diagnosed a week ago, on his kidney, the lovely Drs, her nightmares, not sleeping, not eating, starting radiation and then surgery (reverse of what M had because he had surgery first then radiation) and the what if's ... I knew exactly what she meant.

It wasn't a very long chat but at that moment in time, I hope, we communicated HOPE and shared the confidence we had in her husband being in the right hands with same Drs - how amazing was that in a huge hospital like Westmead. 

I am guessing her situation is compounded by being confined to a wheelchair, with several fused fingers/hand on the ends of both her elbows (She had virtually no forearms...and I didn't ask.) She showed us and told us she was chewing her nails off.

Then she said her husband's first name - and it was the same as my husband. Freaky. We told her  ...She laughed and said " So you are a sh*t.head too then ?" We all laughed but I disputed it !

I still wanted to hug her and say "It will be ok " but it didn't seem right plus she was holding her tapestry (I am in awe of how she managed it with her hands/fingers/forearms disability). 

Who am I to know ? how it all will end ? 

Step by step is all I can manage. I gave her my Cancer Care newsletter instead. I realise now I didn't even tell her my name or ask hers ( Sam, my 5yr old would have asked her in a flash,had he been there.)

Was it a chance meeting or what ?

Anyway , I can also say we are moving on. Today the Real Estate rang to say they have leased our home . We have to be out in 3 weeks + 3days. It is being leased to 4 young doctors in their final year of medicine who need to be close to our local hospital.

It's another huge step for us, moving on, though we rather we had just sold - it gives us a safety net to come back to. True be told, I've been sweating on the results to know we could still move to the farm and not have a reason to stay ... if you know what I mean.

Moving on ...

♥

#Gratitude List

Thankful Thursday...

1. Breathing a sigh of relief that the first bridge is crossed.
   
2. DH's surgery went well though it was a bit trickier than the Surgeon expected. The side effects aren't as bad as they could have been.
   
3. Surgeon was confident he got all the tumour and he personally came to see me at 9.45pm to explain everything. Awesome.
   
4. Hubby was in good spirits when he came back to the ward.
   
5. My SIL came to wait with me. She is amazing & generous.
   
6. My Mum minding the boys at our home last night & today.I ♥ my Mum. She is super.
   
7. Almost all green traffic lights when I left hospital to come home. Incredible. There must be over 20 sets.
8. Prayers of many family & friends.
9. Supportive tweets & facebook comments ...did I tell you how much I ♥ you guys.
10. Hubby should be home tomorrow after the drain comes out.
    

♥ Never miss a post

Post it Tuesday #21

O M Gosh how did Tuesday roll around so quickly. How is May only days away ?

It's been like I wished today (well tomorrow) would happen since last week. Tomorrow is the day DH has his surgery.

I never planned to be away from my blog a week. It isn't because I haven't had anything to say, more the opposite. Perhaps I don't want to say it out loud .

Life goes on at rollercoaster pace ...




My boys have given me so many fun mischeivous moments. I just haven't had so much to say let alone time to blog it. (I did capture photos but my camera battery keeps going flat so I can't upload)

I've had so many things have happen in our life this month. I didn't have the time to write about any of them in depth .
Truthfully , I really didn't have anything great for you today either... but I love post its!

I ♥ Post it Tuesday

♥ Never miss a post

Silver Linings

I know I haven't really written much lately. Though life is never short of being eventful.
A few weeks ago it was #3 son Joel, having a concussion & surgery for a laceration under his eye, then DH having what was supposed to be simple surgery for drainage of an abscess or something. Then last week the Teen cutting his foot while swimming (or exiting the water) at the local river. He had a few sutures. J had another fall at a playground...phew just a bruise.

DH - it wasn't an abscess.
So, here we are.
So, I've been going through that paralysis that hits when there is lots to say and fear to say it... my husband has been diagnosed with a 'tumour' near his right temple.
So, they aren't sure what it is exactly.
So, today was the first appointment with the Surgical oncologist. I won't go into details.

The Specialist Dr is lovely and positive.
The Cancer Care Centre is a relatively new purpose built consultation & treatment centre.
It's interior is bright & shiny, calming & comforting in a way.
It was quiet.
Gentle whispers and voices , soft padding of feet on the carpeted floors.
All the people we saw probably have their own stories to tell. Each person seemed to have a support person, they encourage it. Some you could see were well into their treatment journey of hope.

Though, no one looks another in the eyes, you can see we all are here to find our way to the silver lining - the place where you can feel hopeful again.

Things in life aren’t always easy, we are changed after we or our loved ones experience Cancer and other serious illnesses.

My main advice (for myself) is don't think too far ahead. Don't worry too far ahead. I (we) have to literally take each day as it comes. Be thankful for the time and the days you get to spend together, spend them wisely.

A young, pregnant mum (of 2 under 3), I know of , lost her 36yr old husband unexpectedly , in his sleep over Easter. I don't know any more details why... but it makes you stop in your tracks.

Whatever you want to do, do it now (realistically)- there are only so many tomorrows. Look at your situation and make adjustments. We've had a few plans now to leave our business and do some amazing things and we will (that's another future post or two) ...sooner.

Days of Grace

1. Private health Insurance ...so his surgery is able to be scheduled for next week.
2. Today , I'm especially grateful for our family & friends who are generous, loving, and prayerful.The unchanging, steady pillars of faith alongside our faith in God.
3. The prayers that are being said daily on our behalf mean the world to us.
4. Opportunities waiting to be explored in other areas in our life. (We have a lot of other exciting things happening)
5. Strawberry cream filled Freddo frogs...not quite silver but mmm.
   

Noun

1.

silver lining - a consoling aspect of a difficult situation; "every cloud has a silver lining"; "look on the bright side of it"

Ps.. It would have been my Dad's 68th birthday tomorrow.Today, we were right next door to the hospital where he passed away from his battle Leukemia 4.5 yrs ago. I miss him.Tonight I'll raise my glass to him. He did love a good wine.
We were also right next door to the IVF clinic where our gorgeous twins Sam & Joel were conceived. That's all ...

♥

Never miss a post

A little monkey with a sore head

It's always a good idea when you are away from home to know where the local hospital is ...
We are at my FIL's farm just 20m mins from Dubbo.
My littliest monkey, Joel , decided it was a good idea to climb or swing from the shelves or stand on the chest of drawers. Whatever ...He was supposed to be having a rest.
I was in the other room with his brother and heard the blood curdling scream and thud.
I ran. Fast.
Joel was on the floor the chest of drawers tipped over.
While I was trying to calm him and see where he was injured I saw blood on the back of his shirt. A few drops , then the blood in his hair.
It didn't look too bad after we wiped the blood away but it is a 1.5cm gash at the back of his head.
A kiss can't fix that, though as a paed nurse I know how to care for head injuries.
About an hour before J fell out of the farm's 4WD onto gravel and slightly grazed his forehead
This morning he tumbled off the quad bike onto the grass ...it wasn't going and was climbing on it. (We make sure they wear motorbike helmets when the bike is going.)
He was okay after both events.
I was worried when he was very drowsy in the car on the way to the hospital to get the gash checked by a DR.
Dh stayed at the farm because his father is due to arrive and it would take too long to lock up put the motorbikes away.
We've been triaged.
Now it's just a long wait to see the Dr
I hope they just glue it.
Thankfully , Joel's not drowsy anymore just bouncing around and falling off the seat !

Ps. Last night at bath time the boys discovered a little baby(?) frog in the bathtub ... first Sam tried to drown him in baby oil , then Joel says "I'm going to whack him " (his weapon ~ a face washer).
...little monsters. Dh rescued the little Freddo and let him go outside.
At least his pal Kermit didn't give me a surprise on the loo again.

♥

Never miss a post

Weekly Winners 40 2009

Oct 11th - 18th
A gorgeous and busy week was had by all. The weather was perfect.

Four Little ducks went out one day ...Then the Mother Duck went crazy and chased me quack when she caught me snaping them !

Mr Kookaburra in the old gum didn't mind posing a bit

My little car clicked over 9999km

We enjoyed a day with special friends Tiff & Blossom and their gorgeous children .We ate lots of yummy food ...

Cuddles from a gorgeous girl

We walked hand in hand

We went to the Teddy Bear Picnic the annual fundraiser for the Westmead Children's Hospital today ...

Danced with Dorothy the dinosaur

and wiggled with Wags

Listened to a legend ~ a large Frilled neck dancing singing lizard

Antique pedal cars

Miniature Train rides

It was so hard to chose just a few LOL !
The Thomas train ride was the boys favourite.

Weekly Winners is a meme to show off your favourite snaps of the week ,not a competition so anyone can join in the fun ...Please go see more Weekly Winners @ Lotus's Lotus always has some breathtaking images.

PS Last Sunday my battery was flat and the charger MIA ( found in DH's car console) so I couldn't upload anything !

♥

Never miss a post

Broken leg Chronicles

It is all my fault ! I feel so guilty. Though it is green stick (simple) fracture at the foot (distal) end of his tibia and the best fracture to have apparently the Dr said ! It wasn't displaced . I feel bad for him...it will be six long weeks.

Tuesday I took my boys to the local swimming pool with a friend , her 2 yr old son and her little sister.

We splashed and played. We chased our wild little ones as they jumped and ran about...
My friend and her two year old had already been down the water slide many times before we got there. Then open it every hour .I took J down the slide. S followed behind me, alone , a few kids later.

As I waited at the bottom of the slide to catch him (from going down into the water -though he truly loves the water). I underestimated the speed and the force , he was on his belly and feet first .His right leg hit the top of my thigh - hard and he screamed , then cried for a bit. It hurt me too.

He wouldn't let me put him down and as I went to shower and change into dry clothes to go home I knew he wouldn't weight bear on that leg. He just cried. I planned to take him to the DR to get checked.

We ate a quick lunch with our friends and I came home briefly to see how he would be after a nap and besides I needed my get my older son for help (with my other 2 yr old).S went to sleep straight away but woke soon after crying. I packed everyone in the car and we to the local hospital it was about 4.30pm when we arrived.

They looked busy. A tea lady offered me a cup of tea & biscuits. Gladly I accepted it , then I had to take S for an xray. She even made em another when we got back.

The triage nurse gave S Paracetamol for the pain. By 5.30 S had been xrayed.My husband picked up my oldest son and J after work.

No one told us if it was or wasn't broken till after 7.30pm when S was hungry and wanting, crying food /drink from the vending machines that other were enjoying around us.
A helpful nurse said yes it was fractured and needed a back slab(temporary splint) and it would happen soon...WRONG -we were barely half way into the wait.

I was sitting on hard plastic chair holding him because he didn't want to be put down.
They gave us nothing at all. I had to call my husband to bring food and change for the vending machines.The waiting room was full of broken and limping people it seemed. Another fellow (who had a broken ankle and multiple grazes had already been waiting since 1pm till 10pm.

S was either entertaining (laughing as I played games or just talking to himself) or annoying the other people (by crying) .When my husband arrived someone remarked loudly ..." hooray Daddy saves the day" . Though S cried bitterly when he left as he wanted to go home too.

I was 'patient' to a point but there appeared to be no movements.Nothing was happening.No ambulances arriving no emergencies. At 9pm they said 3 in front of us. At 11pm there were still 2 to go.

I was going to leave at 11.30pm and return the next morning. Then they said he was the next one ... yes so he was at 1am.

S finally went to sleep at about midnight.The kindly Dr was tired and it been a long day /night for her -only 2 Drs on. I didn't blame her . The Health system in NSW sucks. Though I'm grateful we have free access to this health care.

She applied the temporary short back slab up to his knee . S was asleep the whole time. He was so tired .The DR wrote a discharge letter for our GP.We walked out the door it was over 9 hrs later.

Yesterday was hard ...try keeping a normally very busy and active 2 year still against his wishes.He wanted to be carried everywhere I went. I could barely leave the room.

He was so frustrated. Though he knows it hurts if he tries to weight bear on it.I like the worst mummy in the world because I can't make it better and it is my fault.

Today, we went to the Children's hospital for another review .Though I knew we had to wait again a much shorter wait.It still took about 4 hrs. The previous Dr only had said it was left leg in the letter ... wrong one. I only noticed when I gave them the letter at triage.

I told them it was RIGHT but they still wrote for his left leg to be re xrayed (the other hospital didn't give us the xrays because they to be reported on).

So S had another x-ray. In xray I insisted it was the right leg and they kept asking me was I sure ! (SURE I'm SURE). Another short wait but in the Emergency room and a new back slab was put on.

This one is all the way up to his thigh to stop him moving his knee too. A play therapist gave both boys books to read and blew bubbles for them . Then she came into the plaster room and stayed while they put the cast on , reading him a story and keeping him entertained. He had to be on his tummy.

It was really quite lovely as lovely as it can be when unpleasant things have to be done.

Yesterday, S was already trying to scoot around on his butt and using left leg or even the right a bit.

He even 'ventured' to get down where ever I plonked him - I stopped him. It will be a miracle if he gets through 6 weeks without breaking something else. He is such a monkey.

He is going to be most upset he can't play outside with his brother, jump on the trampoline, ride his bike let alone go no where near the water or sand pit or go to the park ...though I hope he can still use the swing.

I don't feel so bad that I am going to enslaved for 6 weeks carrying him and carrying out his every command , hour upon hour of playing cars, building towers and chasing errant or thrown toys or even refereeing fights between his twin ... who has quickly worked out that he now has the comeuppance on speed and a quick getaway with the most coveted toys.

I just feel bad I won't be able to do much house cleaning ;) ... the dust can wait hey !

I hope the TV /DVD gives us a little respite.

I think the little red wagon will get well used again too...

Right now my old camera is keeping him happy - 500 shots of his fingers and leg /ceiling - who cares.
♥

Never miss a post

Smiley Saturday

So many things made me smile, want to laugh, do a rain dance and cry this week.

• A new thing - the Tool man started our awning so we will have an outside undercover area for blocking out the neighbours peeving over us entertaining friends or each other for the Brothers to play under whatever the weather and dry clothes.
  

I listed a few others yesterday so today I am turning it over to you - what made you smile and if "peace begins with a smile"~Mother Teresa - How can you make someone else smile ?

• I have an online friend who just started a new blog ... Nicki @ Mum, are we there yet ?

Nicki is mum to 4 amazing Children brought to her by Birth, adoption and legal Guardianship. Very special children.Here is a snippet of her beautiful blog and I love her quote. She is also into scrapping.


Please go and read of her daughter, Katie's Make a Wish trip to Disney World in Orlando Florida
and NASA - she would love to get some visitors. That would make her SMILE ! She is going to write a guest post for me - that makes me smile.

Right now some other very special friends of mine are in hospital so please go leave a message for them and say a prayer for them

I am also feeling teary for another non blogging pregnant 'Z' (33wks) friend has been in hospital with pre eclampsia , they let her out and she is staying in Ronald McDonald house .She has to stay close to this major hospital (she lives a few hours away) in case her little girl comes early. Z has other medical issues too.

She lost her first little boy three years ago (for other reasons) late in pregnancy .We met online and even twice in real life - she lives over 12 hours away so I can't go see her. Can you say a prayer for her too.

"There are two things that I have found to always be true in life, no matter what.

1. Every day the sun will rise. It is a different day with endless possibilities.

2. This too will pass. These words, engraved on an ancient Sultan's ring, made him solemn in happy times and happy during sad times. Remember these always."

You are amazing. You're doing a great job. Just. Keep. Going.

Author unknown ...

Those are not my words I can only echo them and maybe sing them from the roof top.

Welcome NCLM visitors - please read my welcome post HERE

See other Smiley Saturdays at Lightenings Online.She has a great post this week on Time to Take care of ourselves.

Never miss a post