Something I've learnt

Today was a sad day. The ceremony of Cora's life was beautiful. She would be chuffed and humbled by the whole thing and the packed chapel with standing room only. The stories and the photo presentation of her life filled in any blanks and completed the 'Story of Cora' for everyone who had arrived at different chapters in her life.  There are many tears being shed for her tonight and always and for Peter and Cora's families.

Something that I've learnt about the 'C' is that it takes away choices in your life.  You are dictated to by the 'C'. That's why I called my blog a "Reluctant Passenger" on a freight train, being forced to ride it. I feel like a naughty child being jammed in the seat going to a destination I just dont want to go to.

Preferred destination of choice

When I was given my diagnosis, I was told "this is what is going to happen.....". There was no negotiation in my treatment plan, no options given...just this is going to happen and when its going to happen, you will cancel your holiday.  To some degree it continues that way with my appointments booked for me as they discuss me in the Multidisciplinary meetings they have. For those of us who are somewhat 'control freaks' it stops you in your tracks.

On reflection of that, I thought about those before me with cancer diagnosis. While they were different diagnosis, different cancer - the thing in common is your choices are taken away. With other illnesses you are often given choices or options.

But something I've learnt, and now believe is that you can never judge someone on the decisions they make as they deal with their 'C'. Every journey is different and people deal with it differently. Especially if they have a terminal diagnosis, they are entitled to live their last days as they wish.

I know that my dear friend Cora, chose to work just as hard as she did until she could no longer. It fulfilled her and made her happy and probably took her mind off where she was heading. Noone will ever know if the outcome would have been different if she had stopped, it may have prolonged her life, or not! But it was the way she wanted to live and noone can criticise her for that.

A friend at bookclub - her husband was diagnosed with melanoma. He was given a short time to live. They decided to refuse treatment and live out their days together how they wanted to live.  At first hearing that story, I wondered why would they do that? Why wouldnt they try everything? - but I now understand. You get some choice back to live as you wish to.

A school mum's sister-in-law, fought the hardest fight I've heard of and is still fighting today. She was diagnosed with lung cancer which quickly spread, she stopped work, she tried new drug trial after trial, changed her diet, meditated, tried juicing, vitamin C injections, naturopathy and any complimentary option to her chemotherapy regime. She still lived her life and took several international trips. It seemed with everything she did, one tumour would disappear and then another tumour would pop up somewhere else. She is now taking time out to do all the simple things she loves while moving to palliative care.

Of these 4 stories, each made decisions to handle the 'C' in the best way they knew how.

My journey finds me reclaiming back my choices through changing some other things in my life, my perspective on things, my diet, doing meditation and understanding where I'm heading and why. I'm enjoying work/life balance and working 2 weeks in every 3.

Asking questions of the specialists and researching each stage gives me some power back to understand and have the knowledge of why they do things. It has found me in some scary mindsets sometimes, where the specialists hadnt given me the information earlier because they didnt want me to think negatively. But it enables me to deal with things the best way I know how to process it all. Then use that to try and focus on the positives.

But that's my journey - its not necessarily the right or wrong way! Just right for me :)

Heavy Heart

Today I have a heavy heart. Today my beautiful and brave friend, Cora passed away after her battle with cancer.  I am devastated because we had planned to visit with her this week, but the chemo side effects got the better of me with this new drug and so our visit was delayed.

I hope I had told her everything I wanted to before she passed. I am so grateful for knowing her and I was always inspired by her achievements in her life. She was a successful sales manager, had travelled the world, had overcome brain surgery, had bought and paid off her own house in her 20's and she was loved and adored by all who knew her. I never heard a bad word spoken about anyone from Cora, her gentle spirit touched us deeply.

Cora and I met at AAPT and with Peter we have all been friends for around 18 years. Cora was a beautiful person both inside and out and we shared a healthy interest in food and fashion. We shared many happy times together with her thoughtful, ever charming partner, Peter.  They were my surrogate family when I moved to Melbourne and took me under their wing.

Andres Christening

In the earlier days, before marriage, kids and moving to the northern suburbs, many a weekend was filled with hanging out with Cora, Peter and Grafton, the cat. They embraced me in their lives, they were happy times filled with laughter. We shared sad times too, like taking turns in rolling over Grafton in his dying days. Cora was my first choice to be my bridesmaid who had been there for me when I needed her.

Our busy lives And geographical distance now meant we couldn't just drop in on each other and our catch ups were squeezed in between me having babies and feeding times or when Cora was in town :) although when we did catch up it was like we saw each other yesterday and picked up where we left off like all good friendships.

Engagement Dinner

Engagement Dinner with my special friends

Visit with newborn Andres

When last seeing my friend, we shared some memories while I painted her toe nails and massaged her legs. A tradition I started when last she was in hospital for brain surgery. I hope I added to her life as much as she had mine. When I left that day, Cora was struggling, but we still managed to laugh about things. She told me she was dying and told me that she loved me. I was always hopeful that it was just a hump, that she would get through this.  When she had been moved to the palliative hospital I spoke to Peter and he was positive about long term care plans etc, it seemed hopeful, while not the outcome we wanted.

I will never forget her smile, her grace and her contagious laugh. I can hear it now and it makes me smile. I can't believe that I won't see or hear her again. My heart breaks for Peter, her mum Letitzia

Her Dad and her brother., Marco.

Sleep well my beautiful friend. 

Day 5 post chemo

Day 5 - Morphine is my friend

After 48 hours of pain in my muscles and in organs that have a muscle, it was time to do something about it.  Now who to call? This is where private is alittle easier, you know who to call.

We decided To drop the kids off to mother inlaws and I would call the cancer centre on the way, since they were responsible for the way I was. But they don't start until 8:30 am so we had arrived by the time they were open, so decided just to show up there. Well we caused all sorts of chaos going against protocol!! You are supposed to phone first so they can be prepared.....okay they never told us that. So finally Malcolm took my symptoms in the waiting room for all to hear.

Anyway eventually once all in their world was 'righted' to normal and they went about dealing with me, the rebel that I was.

I had another appointment with an oncologist called Jo, she was lovely and cleared up some questions we had on the MRI.  She confirmed that the lymph nodes impacted are showing normal cell structure, I'm not sure if they need a biopsy to really confirm that but that is good news. Not having surgery first and knowing they were sitting there with abnormal cells and that it could spread through the lymph system while I'm having chemo was scary. 

Since having endone yesterday I have started to feel almost normal - yay! Very sleepy but it is stopping all the muscle aches.

I have to thank John for looking after me so well. He has been a strength through this process, while the kids make their concerns known from time to time. Taking them to the royal Melbourne show on Monday to have some fun and frivolity to get their minds off me moping around from bed to couch and back to bed. Andrés said he will serve me dinner in bed when they get back and Alexander made sure I had everything I needed...when they got back alexander said there was something missing at the Show - me.....

Expecting tomorrow will be even more normal. :) 

MRI Results

 MRI results and surgeon appointment

So today I spent the morning at the Look Good Feel Better program for cancer patients, learning how to draw on my eyebrows as they start to thin out.  It is a program that helps cancer patients feel better by demonstrating head wear, including wigs and learning how to apply makeup properly. The best part is bringing home a sample bag of the products we used.

Thanks Heidi for accompanying me to this program. We saw some Wayne's World, Joan Jetts and Friar Tuck hairpieces that you wear under hats without it being too hot. Everyone decided Friar Tuck was too risky.  There was discussion about hair they supply for EVERY part of the body!!!!!! When hair removal goes too far, they can provide a 'prosthesis' if you get my drift....why would you??!!!! Anyway it provided some good laughs.

Then, this afternoon, I had my appointment with the surgeon, which is difficult to absorb. 

Overall, the MRI results are good and she clapped her hands which was the main point of the appointment. Out of the 6 tumours, 2 are no longer visible when compared with the previous MRI. The other 4 have shrunk to half their size and there is no further spread in the lymph nodes, just in the 2 that we knew about. So a good result.

Halfway MRI Results - Fat F&*K and  his friends shrinking

It's when we started asking about grade of cancer, likelihood of recurrence, likelihood of spread to the other breast that it got a little scary and contradictory. Basically, my doctor started contradicting some of her statements but it is all dependent on what angles you are coming from.  Cancer is so complex. While I have tiny to average size tumours, the spread (invasiveness) of the cancer and the fact it is in my lymph nodes makes it high risk category at stage 3 and High Grade (low, intermediary, high Grade). But there are 3 levels of stage 3 (A-C) before getting to stage 4 - the worst and highest stage. I suspect it is stage 3A (maybe 2B) from what I've read. (My doc only told me stage 3).

They come up with this status after looking at the 3 different oestrogen and progesteron receptors of the cancer (how fast it grows, whether its fed by hormones etc).  Then they look at the size of the tumours, the spread and if its Node positive (in the lymph nodes).  And lastly, Stage 4 if it has spread to other distant organs.

My recurrence risk has not yet been determined and they use my original diagnosis data, not where it is now to determine it. By plugging that data into a database of previous cases they determine your survival rate. Obviously this hasn't been done earlier as I think she wants us to remain positive.

It is important to come away with only the positives of what we know and not look into the possibilities.  She said that they are still working for a cure, and that the results are going in the right direction - that is the main things to focus on.

The next appointment is with the plastic surgeon. Surgery will be in January depending on waiting lists etc. But I have a private referral for a plastic surgeon from my GP, who has just passed the 5 year mark after her breast cancer treatment.  There will be a lot more to consider with that part of the journey, which to this point I have avoided looking at or reading anything about it.

Next chemotherapy is scheduled for Friday, I wonder what Taxel brings me in side effects? 

Thanks again for all your support and encouragement :) 

4th September

Wow - so that was a ride! So finally feeling more normal now - 7 days post chemo.  I was really sick on day 3 this time, hopefully I'll have lesser side effects with the new regime. 

Tuesday is MRI staging so looking forward to that and visualizing a no tumours left result!!! Although I won't have the results until the following Tuesday 15 with the breast surgeon.

I read the other day about an author who had written a book about coincidence and that its God sending a message - his book is 'God Winks'. I don't know if you believe in God but it's worth a thought about coincidental circumstances that make you change direction or effect a course of action, each 'message' - a God wink. But.......you have to be listening!!!!!

Before my diagnosis, 

- I had decided to get fitter and healthier and concentrate on what and who was important in life. 

- John had lost an elderly aunt that we had meant to visit in Werribee, but never made the time on a weekend and then it was too late, she passed away quietly one morning.

- I was dragging my friend Heidi off to mole screen to check our moles from the bad habits of our sun tanning childhood, and get them recorded and raise our awareness

- I was getting back in touch with people that mattered rather than making excuses about how busy life is. 

- I went for my mammogram after 2 friends were diagnosed and a 3rd told me her mum's story

I was making some positive changes in my life, like a mid life crisis, And then wammo - I got my diagnosis, which I would never have known about if I hadn't been focussing on my health and it would have been too late to be classified as 'early'.

It still surprises me, that women I talk to still have not had a mammogram.  I wonder if I take my wig off and show them my bald head, or hear the fears of my children, or watch when I lay in bed at night wondering if they've missed something in my body scans....would they think it's worth the inconvenience of a 15 minutes of bearing your chest to a stranger to photograph once every 2 years? 

A mammogram should be treated the same as a Pap smear for every women over 40, the timing of them booked together every 2 years and yearly if you have something of interest. Getting it early has better outcomes/prognosis. As my gynecologist said to me when the breast starts to change after 40, each change can be picked up with the historical scans and it is the best defense - so why wouldn't you???!!!!! I wish I had gone back 6 months earlier at 2 years.

Being there for your kids should be at least 1 motivation to get it done. 

Anyway, off my soapbox now.

Friday 18th is booked for my chemo - new drug, new side effects, hopefully my hair can start to recover and no more dizziness after administering chemo......OR on Tuesday 15th appointment with my surgeon, the results of my scan suggest that we stop chemo and start the surgery journey?????  All will be revealed - so cross your fingers and toes with me on Tuesday that fat f$&k and his friends are GONE!!!!

Tuesday is also an appointment with the Look Good Feel Better program where I get a makeup goodie bag and learn how to draw on my eyebrows now that they've thinned out somewhat. Hopefully they don't fall out completely :(