A Collection of Thoughts

These Days

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The last few months have passed like sand dropping through an hourglass. When you watch it seems infinitely slow.  But when you look away and are drawn back time has marched on.

I wondered how to come back to this space where I share my story and connect with people. I wondered if I even should. But truth be known I missed it. In the last few weeks I keep finding myself thinking oh I should blog that. I should email someone that. Oh so and so would like that. So I figure it is time.

It is hard to put into words where I have been. What's been happening.

I think I'll just start from now. Where we are these days and leave where we have been behind. I hope you don't mind.

The not so grand - I'm recovering from surgery. A very unwanted hysterectomy that I eventually came to terms with because as my oncologist so succinctly put it. I've told you twice already that you have to. I won't tell you the third time you know why? Cause you'll be dead.  He's never had a great bedside manner. I start on aromotose inhibitors December the 12th. I've been fighting them too. I even took my battle weary well research friends Paul and Rhonda with me for multiple consults to argue but we have given up and I'm doing as I'm told.

No more googling researching thinking for me it's too exhausting. It's been more than two years since diagnosis and I have a fresh slew of wounds and I'm well and truly over the "journey". For those who know cancer speak you may wonder why we are now heading into an oestrogen positive treatment regime after being on a triple negative. I know I did. The short answer is to be sure. The only thing I'm sure of you can never be sure.

So we trudge on. Some days are far better than others but  I'm no pioneer that's the case for everyone.

I do have lots of grand stories to tell too :)

I'll be back soon with some I promise :)

February Wrap Up

Every time I begin to get down about my lack of ability to juggle everyday life the way I used to I flick to my instagram feed to remind myself that the juggle is well and truly happening. Ive been back at work 4 days a week for the last month and its not so smooth. too much to do not enough hours that hasn't changed ( no surprise ) coupled with the fact that it takes me longer to do stuff, longer to process things, I forget and I make mistakes. I get anxious about things that I used to do without even thinking. I find myself awake till the early hours of the morning running through my to do list - over and over. I've tried all sorts of tricks, writing intense to do lists, getting extra people on board, preparing earlier, drinking camomile tea but nothing works. I find myself over preparing and in turn I'm exhausted. I'm trying to find a balance. Still life goes on - I'm well. My girls are well, Richards well, we just keep on heading forward.

 A  look through February via Instagram :)

It's been the wetest start of a school year ever.  Flooding in so many places - the girls spent a weekend baking for Baked Relief and then Richard took the goodies to a drop off point to be delivered.

We celebrated Chinese New Year with our usual banquet.  25 guests including some of the girls friends from school which was really lovely.

The girls have had a wonderful start to the year - they are enjoying their new grade and teachers and classmates. Each weekend is spent madly working on a science matrix to do with the solar system. They took posession of brand new MacBook pros chocked with amazing software from their school.  It's a different world.

 We have implemeted a new chore/ pocket money system using a little app called Iallowance which I HIGHLY recommend. Takes a little to set up but really great.  The girls now have a short term and long term bank account and a charity account. Each week they choose how much to go into each account based on what they have earnt. If you'd like to know more  just say and I'll write about our process. It's working well for us ( the girls are ten ).

Lent has begun and we were fortunate to be asked to run a prayer group from our home each Tuesday night. I'm really enjoying it and hope we have the chance to contine past lent.

The girls ahve started Youth group - we  have tried three and have finally settled on one that works for them and for our schedule.

I ran my first 5K race for the year with a friend from school. We are signed up to do the progressive series. I feel the marathon goal slipping away from me but I'm still hopeful for the 1/2.

I finally decided it was time to get my hair cut. I am yet to ditch the grey and at this stage I won't be . I love my new style and I'm thrilled I have found my old hariderresser. He is so good and hasn't changed at all in the 8 years I lost him for.

Most nights I have been watching TV and working at the same time. My laptop is open waaay too much so I decided to start with Mel's ripple along. I have finally nailed the pattern after quite a few false starts. I figure having my hands busy with that may still my mind.

 Time will tell.

Thank you for the emails and texts that I've recieved checking in that I'm OK. I'm sorry I worried people. I try to post at least one photo a day to instagerm/ facebook or at least pop a status update up. Thanks for staying with me :-)  Bring on March I say.

 

Merry Go Round

I am writing this post not to gather sympathy so please feel free not to comment I'm  AOK. I'm writing for my own record and as a gentle reminder that there is no such thing as it's all over. Been there done that got the pink ribbon.

Ofiicially I am in remission. I'm in the reconstruction phase and apart from the hiccups with my last surgery I am at the point now where I am being infilled and working towards the final surgery of implants. It's all good.

It's actually rather ouchie and I'm yet to kick the pain killers but in the scheme of all the things I have been through this is bearable.I see the light at the end. This is last hurdle to endure.

Sunday afternoon I went for a lie down. I have been feeling under the weather with a bit of a flu head cold thingy that my lovely daughters share with me. It's turned to asthma and I'm feeling generally blah.

 As I lay down I felt a weird twinge in my right breast  and thought ouch. And then it happened again. And then time stood still.

It was the exact same sensation I had each time I had a tumour. I have spoken numerous times about how my tumours hurt and pulse. It was so far out of left field that I didn't recognise it at first.

I kept it to myself all afternoon. Then finally before I didn't fall asleeep I told Richard. Who also then didn't fall asleep. I know I'm kind like that.

Monday is a surgery day for my surgeon so while I was able to get an appointment for Tuesday at 2.30 I had a whole day to wait.

 Each time it pulsed I stopped breathing.

I knew if it was what it felt like it would be a new primary. That means a new cancer not related ot the the other ones. Because it's in the other side - where I have no breast tissue where it shouldn't be.

I've tried to stay calm. I didn't want anyone to know - especially not the girls. I'm sure friends and family are sick of the what now phone calls. But I do have one friend who msged with me back and forth and we made a whole slew of things that it could be. God bless her.

Finally I had my appointment.

 I wish I could say that a weight has been lifted and its all fine but its undetermined at the moment.

My Dr is amazing he always listens and check exactly where I say. He tells me I'm not crazy and that I'm right to check.

We found a pocket of fluid  which could be pressing against the expander which has folded in on itself. Its very close to my heart which could be causing the pulsing sensation almost like water ripples.  The next few weeks will tell with the fluid being absorbed. The good news was there was no obvious great big black spot appearing on the screen as it has in the past.

So for now we wait. I have put infills on hold and he is happy with that.  If it doesn't settle itself then I'll head off for a better scan and MRI.  I'm comfortable with that.

So now I go back to planning our holiday and trying not to worry. If only I could shake this cold thingy too - I missed my run this morning!

 

December 9th - 15th

Well that was a little longer enforced rest than I had hoped for . All good back in the swing again albeit a little quieter than I would like. Nana naps and plenty of pacing myself so I can do the things I really want to. I still have a drain in and am fighting some pain but the girls went to their great grandmas today for craft and cooking - God Bless her! I had friends take me down to the shop later to get some things done without children ;) I'm also working on catching up my december daily. It was easy enough to keep the photos happening with my phone.

December 9th

 

An early christmas lunch with our good friends who have jetsetted to Japan for Christmas. So jealous. Ryan made this fabulous meringue tower which took pride of place on the table. It was using a kit from coles  and we have already popped one in our cupboard the girls are very keen to make it too.

 December 10th

A typical Monday of work, training meals, housework. The girls love this time though as they are already on holidays and we are relaxed about their bedtime and activities. Tonight they watched Legally Blonde for the millionth time and made these cute door hangers from Big W.

December 11th

 

The last day of term for me - which was quite a milestone. I made the difficult decision to push my return to work early. Fortunately work was more than accommodating and I managed to do two days for a whole term ( a bit more if truth be told ) completing the VET reviews and audits and I was roped into a few other projects along the way.

December 12th

Surgery for the insertion of my right expander had been planned for this date for sometime. However running true to form things didnt go as smoothly as I had hoped and chest pains after I woke from anaesthetic had everyone running. A quick ECG revealed anomalies with my heart. Not good. I have never googled heart stuff just cancer I had no clue what was happening. It's always going to end in tears when you have to text your hubby - moving to ICU try not to worry - don't tell the girls.

December 13th

I needed an angiogram to see what was happening but because i had just had surgery I couldn't have the required blood thinners. So we just had to wait and monitor. I stayed hooked to machines with regular ecgs each one bringing back the same result that there was somethign blipping in my heart.   The girls have spent far too much time visiting in hopsitals and seen too much already I had no intention of having them visit me in ICU. So Richard kept things at home as normal as he could with the news that I wasn't allowed visitors which didn't go down too well.

 December 14th

Richard and the girls spent the day at Movieworld while I underwent my angiogram. All was clear and I could finally begin to relax. Another night in ICU.

December 15th

 

Those smiling faces say it all really - I was moved to the wards and the girls were able to visit. Happy Days ;)

 

Light at the end

via pinterest.com

 

   Psalm 18:28

 You, O LORD, keep my lamp burning; my God turns my darkness into light.

 

Heading into my second last surgery this morning. There is light finally at the end of this very very long tunnel. God is good.

See you on the other side.

December 4th and 5th

Thank you for all the lovely well wishes for my results. They were far better than I had hoped for with word being that he doesn't want to see me for 6 months. The last few weeks have been hectic to say the least and in particular the last couple of days. My work schedule is relentless as it takes me so much longer to do things these days. I am on a strict training and diet schedule imposed by my surgeon in the lead up to surgery next week.

 It's all taking its toll at the moment.

 Still, I have only three working days left this year and I will have managed to do what I set out to. Tomorrow I have some nice things planned for the afternoon and I'm very much looking forward to the weekend. I am so grateful for all that I have and the people who carry me day after day. God is indeed good.

5 Days of December daily documented and ready to add to my photo book. YAY

 

 

 

December 3rd

Not all days are filled with sparkly christmas love. Be nice if they were.

Today was marred by the passing of a dear friend. Someone I had worked with for 18 years. She was one of my staunchest supporters in my darkest times. She always told me that she and I would make it because only the good die young and neither her nor I were good. She was wrong because today she left me to fight alone. We shared oncologists and I had to visit with him today too. A mix up with the lab meant that he wasn't able to give me any results and I had to go take further bloods. I'll know how I am travelling in the next few days.

Definitely not sparkly. I took plenty of time out for reflection and reality.

 

One Year On

This weekend I turned 41 :)  Without sounding all maudlin and blah there were times over the last year that I didn't think I'd make it to 41 ( I wasn't the only one! )- Now I'm pretty confident I'm going to get to at least 42. YAY go me ! 

I look at these photos and think so many things

1. How much have my girls grown in a year? They are my absolute pride and joy and have kept me focused through everything.

2. I see the worry I had in the first photo and in the second I think I have aged about ten years.

3. Being bald was the least of my worries - though the girls hated it with a passion.

As I flicked back through my instagrams to find last year's birthday shot I was grateful that I took the time to document the year for what it was. I am ever so grateful that I had no clue of what I was in for. That first shot I was two sessions in to chemo with 9 months still to go. I was sick then but I didn't have the foggiest about how much worse it would get.

Truly I thank God for not knowing.

It's only now that I can look back and see what it was like.

This morning I got up and went for a run because I could. I had a cry along the way because I have come so far and it feels amazing.

I don't believe that I will ever be a person who says that breast cancer was the best thing that ever happened to me - there are many who do say that but that is not me. However I will conclude I'm not the person I was and there's plenty about that I am grateful for. 

Jesus said unto him, If you can believe, all things are possible to him that believes.

 Mark 9:23

41 years and counting.

Taking a Moment

It's been some time since I checked in on how things are going.

via pinterest.com

I figure now is as good as time as any on the eve of the official end to my first "week" back at work. It's been exactly one year since I left. Time moved infinitely slowly through some stages and now it's speeding up again. I've requested the return to work I feel it's the right thing for me and my family and my workplace. I get to see how this goes before I jump back in full time at the start of next year  So two days a week it is.

I was apprehensive to say the least and yet again surprised by how different it was to what I expected. I met with my GP who is managing my return to work last Thursday and he shared his own experience of being off for a year after a serious illness. He warned me it wasn't easy. You'd think after all this time I'd listen to what drs had to say. He was right.

I suspected, but now I know for sure, my brain doesn't work the same any more and while my friends joke with me that even with a dodgy brain I'm still working faster than some. I am not sure I agree. I worry that the expectation is that soon I'll be who I was. Without sounding defeatist I am not and won't ever be again.

It took me nearly two hours to work out how to find things under a "new to me" operating system on Microsoft Office 2010. After failing to work it out myself, I ended up asking two different people to show me the same things so I could finally get it. GGGRRRR. In happier news though I am in love with One Note and am about to search to find how I can use it on my mac as well- I hope there is a way. If so I will be ditching Evernote.

Today I packed up half way through the day - knowing if I didn't leave soon I wouldn't be fit to drive. I was so mentally exhausted. I had a meeting with a colleague too who I also know personally and he questioned where I was with what he calls my "art". I didn't really have an answer. It upset me not to be able to share a plan. I hate that this  disease has taken away who I was. There is much talk in cancer circles of the new normal. I'm not loving the new normal for me in a professional sense. It's hard enough in an everyday sense let alone in a work setting.

The tiredness comes from nowhere and catches me unawares. My girls get upset and and frustrated with me when they are trying to tell me half a dozen things at once and I have to tell them to stop. I see the worry in Richard's eyes when I am over tired and my words don't come easily or end up all blurred. 

I find myself becoming over anxious about little things - did I close the door? Have I turned off my straightening iron? Did I confirm that appointment? While before I used to ask myself those things and shrug it off now I have to catch myself from the question becoming an outright code red  OMG I left the straightening iron on so the house will burn down the neighbours will all die and it's all my fault. It's not rational.

I ask for dates and times over and over again. Sometimes within minutes of just asking. I pull out of the driveway and have to stop to remind myself which way I am going. I can't add numbers anymore- Richard would argue that I have never been able to LOL. I go to the store and find myself chanting the three things I have to get and then standing in the checkout with just two things knowing there was a third and getting teary because I can't remember.  I know to write a list and more often than not I do - but I resent that I have to. 

This is the everyday normal stuff how will I be at work when I have to start talking acronyms and time lines and systems?  I worry that my brain will just explode and pour out my ears from trying to decipher everything --- > see not rational!!!

Still I count my blessings as my doctors have said no teaching just admin - so I'm figuring if the worst happens I'm only going to be making a mess of paper work. My work colleagues are amazingly empathetic even down to coming to find me to make sure I have morning tea ( I hide away in the quiet ). I am so so lucky.

This is the story that doesn't get told. It's the mop up afterwards. Of course we rejoice the NED ( no evidence of disease) and we give thanks the blip in life is over, but now I know there's a whole new journey just about to begin. Apart from pushing back the everpresent thoughts of recurrence, I am learning that through treatment there are side effects which range from annoying to outright debilitating but after treatment there are what I'm calling after effects.  No one talks about them though.  As long as you look normal - have hair something that resembles breasts or appropriate clothes so that it's not noticeable and your scars are hidden then we are all good. 

I'm not saying that I am not good to go - I feel like I am. I am certainly one of the fortunate ones in that my scars are hidden and I do have hair and I do look normal. But I think that it's important to be honest about how it really is.

The media perpetuates the "pretty pink ribbon concept" - with high profile people back doing their thing within weeks of diagnosis making us mere mortals seem weak and hypochondriacs in comparison. I want you to know its not like that for the vast vast vast majority.

This month is of course Pink Ribbon Month   If you get a chance to attend a Pink ribbon function please do. We will be at this Pink Breakfast over the week - if you are local or in Brisbane/Sunshine Coast please consider making the trek to New Farm Park  - it's a wonderful day my friend Margie ( a breast cancer survivor ) has been running for 7 ish years now and the kids always have a great time. Wonderful raffles and fab food all supplied. 9 - 12pm. RSVP through this link and shoot me an email if you are coming so I know to look out for you.

If you are further away then please consider making a donation to my lovely friend Alison.  She had 2 surgeries, 6 rounds of chemo and 6 weeks of daily radiation. Alison  was living out west so had a total of 16 flights last year for treatment, with her 2 year old. She travelled every 3 weeks for chemo and stayed in Brisbane for 6 weeks for radiation. She is paying it back by completing the Triathlon Pink in November - a 300m swim, 9km bike ride and 3km run. So inspiring.

Finally, If you can't attend a function or donate then maybe just pop over to this site  - The Scar Project -   Breast Cancer is not a Pink Ribbon. Amazing real images.

"A visual world few have seen where grace, guts, pain, and femininity all cross paths to expose a deeply moving side of humanity."
-LIFE

 

Ok I am off my little soap box now - thank you for walking with me.

Today I am Thankful

I want to say thank you again for all your lovely comments and private emails sharing your own stories and wishing me well in my decision making.

I owe lots of emails I will be trying to get to them in the next few days but I'm also taking advantage of the girls being on camp and getting a few things done around the house at the same time. I just didn't want you thinking that I don't appreciate your contact. I do. Every single word. I always have.

I feel like this journey has no end. Every time I get to the next stop and am about to get off the conductor closes the doors and I have to keep travelling. Without doubt I bought the cheap ticket - it's no express train. I'm just trying to sit back and enjoy the scenery for what it is.

I want to keep you all informed as I know you want to know  (you wouldn't be hear reading otherwise) but I also feel it gets tiring. You must groan with each new update and think for goodness sakes what now. I know I do writing them. I think it's ironic really because I'm totally the opposite of this. I'm the glass half full girl so it's tough to keep writing about the empty half each time. Sharing the constant set backs or changes to where I think this is all heading.  I'm going to close the comments on this post because I don't want you to feel like you have to comment. Reading is plenty and I know your prayers and thoughts are with me as I step out yet again.

 Thank you doesn't seem enough.