I miss my hair

Oh look - my hair! Tessie and I waiting for my MRI appointment in the waiting room - everyone thought we were out drinking in Fitzroy by the comments on Facebook.

I find myself pining for my hair - especially on these hot days. Always wearing a head covering is too hot, even the light cotton ones. I miss my eyebrows and eyelashes, I really thought I would keep them, but they fell out completely with the second last dose.

1year ago!

Santa didn't bring me any hair like I asked. It seems 1 step forward 2 steps back with it. My friar tuck hair style has gotten thicker, but the top which grew back first, seems to have been killed off with the 2nd drug.

But my eyes aren't weeping so much as before, there's some progress in the right direction.

My sister and nephew headed home back to Brisbane - it's always a little sad to see my family go back home after spending time together. Mum and Dad still here until Wednesday.

With my fat feet getting me down, the radiation side effects looming and surgery booked for 4 March, I know I have a way to go. I heard these lyrics and thought they were appropriate for the next 6 months for me.....

Fight Song

Like a small boat
On the ocean
Sending big waves Into motion
Just like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
(Starting right now) I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me


Read more: Rachel Platten - Fight Song Lyrics | MetroLyrics

Merry Christmas

Merry Christmas everyone, I hope you hugged and held your loved ones that little bit tighter and a little bit longer - I know I did :)

I hope you had a wonderful Christmas with your family and friends. This Christmas was more special for me this year with the great Christmas present of no tumours. But I also really wanted a 'real' Christmas tree for the first time. So I bought one against John's better judgement. The smell in our house is divine!!!

It was a lovely Christmas with 19 of my nearest and dearest relatives at our house. john spent 3 days straight preparing the entertainment area and cleaning the house. Everyone brought a plate and we used throw away plates. I set out a timetable on the day that we worked to and I didn't need to manage. Mum and my sister Leanne helped while Zi put the meat on to cook sitting on a stool.

I managed to whip up a cake for the season too.


It was a great day, and we are still eating sweets from the day, so I won't be getting those fluid kilos off too quickly. I told the radiotherapy nurses today I might be a little rounder. They have measured my treatment based on my circumference and need to adjust the measurements of the machine if I lose or gain weight. They thought that was funny after I gave them my Donald Trump'(new name for my wig) for safe keeping.

They gave me a Christmas present on Christmas Eve which was lovely - a little Christmas candle. They are very caring and considerate nurses and radiologists. I felt like I should be giving them something as they are saving my life!!!

Due to my fat feet, shortness of breath and no energy, I didn't get to Carols by Candle light or visiting some lights this year. Oh well, I don't think the kids were devastated about it.

My edema has not settled down despite what I'm trying. I might have to seriously think about some fat shoes to wear to fit my fat feet. This Friday marks 6 weeks since chemo - and still the side effects linger!!! :(

Radiotherapy week 1

So I just hit my first milestone of 1 week of radio and 5 to go. It was a little nerve wracking but made easy with my friend, Heidi accompanying me offering plenty of distraction and support. It does make a huge difference when someone is there with you, as independent as I like to think I am. My appointment yesterday, I dragged john and the kids with me. The radiation team are brilliant and took the kids through to show them where I go and explain what happens before whisking them out as they de robed me on the table. I was holding back tears as the reality of my kids seeing it sunk in. Kids always make everything that much more emotional as your connection to them and the importance of you as a mother is in their little lives.

Anyway, after radio the nurse meets with you to check on you. I casually mentioned labored breathing, the swelling of feet and legs and rapid weight gain - which put me in hospital!!!! I feel well so it seemed like a lot of fuss. The kids were dropped off to Heidi's after school with nothing but their uniforms, and ended up sleeping there as John didn't finish until midnight with me when the doctors finally had a plan.

It was precautionary as Docetaxol can damage your heart. So they were looking for clots possibly causing my leg swelling. The good news is that they found nothing sinister, I'm yet to do a 'echo' of my heart on the 29th which specifically checks the heart valves. It was funny though, in emergency chilling out and minding my own business and they called a code alert on me. I thought they had the wrong cubicle but it was because my blood pressure got down to 85. They asked if I was dizzy - no nothing. So they started tipping my Bed up and doctors kept coming and a saline drip started. Tamika, the nurse did apologies for doing it afterwards, but it's procedure.

i was taken to a ward about 2am, when my blood pressure got to 100, after arriving at ER about 6pm.

The wards are lovely at Olivia Newton John as well. A nurse is stationed in your room with 3 other beds. I had 3 blokes with me. They were characters. I overheard 1 of them telling his wife "a girl came in my room last night"!! He was a bit of a joker and had everyone in stitches. 1 of them I knew had advanced stages of cancer throughout his liver and kidneys from a melanoma that was removed 8 months before. He was hopeful and we discussed some of the more miraculous stories with the latest immunotherapy treatments. i felt like a fraud taking up a hospital bed when I felt perfectly fine just lying around amongst these guys.

But again, giving me another opportunity to remain grateful and lucky.

So at home, with my Fat feet back on diuretics, because they said so and occasional tight chest.

Another opportunity to feel so lucky to have wonderful supporting friends with text messages cheering me on, swelling reduction product ideas, free babysitting of both my children, and me and a Home cooked meal Of yummy cacciatore to come home to from hospital from Leanne and pizza from Heidi.

Now a week of Christmas preparation, Luckily I did most of my shopping online already. Have a great Christmas preparation week. Xx

FF

So I'm coming up to 3 weeks from last chemo, and I'm glad that there arent any more sessions to go. The side effects have obviously built up over the 4 applications of Docetaxel.

I have Fat Feet, my new FF!

Jana calls them baby feet (like little baby chubby feet) - she's right on the money with that description. I have edema over most of my body, my knees are unrecognisable and I will soon be wearing John's tracksuit pants to work with thongs. My upper body doesnt seem as badly effected - so far. I cant fit into my skinny jeans and tire out very quickly. Now there is a dichotomy - they say that exercise helps move the fluid through your body, I mean a good sweaty workout!!! I cant even get my ankle to bend with the amount of fluid in it, also my heart starts hurting and I cant breathe, how am I supposed to do a sweaty high impact workout Michelle Bridges style??? I feel like the actor in Big Mumma's House at the moment.



All of the Oncologists must practice that "that's not a side-effect" shake of the head and changing the subject with patients when they go to University, as they all deny that edema is a side effect of this drug, even though its all over the internet. All they care about is treating the cancer rather than the side effects, unless the side effect impacts the drug treating the cancer. Anywayz.....I should be more grateful shouldnt I!!!

My finger and toe nails have survived, although very sore at the moment. They look bruised and have some ridges, otherwise not too bad.

Anyone interested in what the drug does, I have included a short paragraph below. They have attached the cancer with 3 different drugs, attacking it differently. This was the final drug:

GENERIC NAME: docetaxel

BRAND NAME: Taxotere, Docefrez

DRUG CLASS AND MECHANISM: Docetaxel is a drug that is used primarily for treating breast cancer. Docetaxel works by attacking cancer cells. Every cell in the body contains a supporting structure (almost like a skeleton) called the microtubular network. If this "skeleton" is changed or damaged, the cell can't grow or reproduce. Docetaxel makes the "skeleton" in cancer cells unnaturally stiff, so that these cells can no longer grow.

I always said I'd never have tattoos or plastic surgery in my life, but now have some little tattoos!

I went to the Olivia Newton John Cancer Wellness Centre for my planning appointment for radiotherapy. What a beautiful place by the way. It doesnt feel like a hospital at all, except for the occasional dr gown you see. Its all timber floorboards and inspirational artwork on the walls. Waiting rooms are like hotel lobbys. I had another CT scan and they tattooed the position of my radiotherapy points. They are only little dots so the machine knows where to follow throughout the daily treatment. They also made a mould for my back and shoulders for exact positioning every time on the bed. It all seems very high tech. I start this on the 14 December for 6 weeks over the Christmas break as well. Then, surgery is most likely going to be in March - 1st or 2nd week, waiting for confirmation from the Plastic surgeon and my breast surgeon.

The kids are excited for me to be normal again. Jana wrote me a letter saying she is looking forward to us being a normal family again - with my hair growing back and me not being sick every 3 weeks. Hopefully there will be very little side effects of the radiotherapy.

I'm now on a duretic to reduce the fluid in my system. I will be having a blood test to make sure its not effecting my kidneys too much in a week. In the meantime, I will try and stay home as much as possible so I dont have to roll around the place, until they start to work. Fingers crossed. :)

What a Ride!

Sitting here feeling like a half tone truck ran over me - opposed to the 1 tone truck the 2 previous days, I'm starting to let me get excited!!!!!

Getting excited about all the things that having chemo takes away. I'm looking forward to eye lashes (no more crying), eyebrows and more hair growth. Being able to feel hair in my hands, is a dream not too far away. I'm looking forward to being well for my kids and not making excuses to sit with them at night or tuck them in on those chemo weeks. Getting short with them when they get annoyed and don't seem to realize how unwell I felt at the time, is all in the past!!!

Friday was a mixed bag as I went in to the cancer centre for the last chemotherapy. I said my thanks to the lovely reception staff, my oncologist and more importantly the amazing cancer centre nurses. They all go that extra mile to make you feel comfortable, double check on your symptoms and help you feel a little bit normal. They make you feel like you aren't a sook and they listen and act to make things easier. I'm lucky - I only had to go for 8 sessions, some are there until the end of their days some are there for double and triple or back again for recurrence. I don't ever want to take that for granted. So goodbye cancer centre, goodbye to my healing chair 😊

Coach Present for me from me to celebrate!!!!

So here's my treatment color-in. 7 chemo spikes finished, all the tumours gone (the round ones). The others resemble radiotherapy x 6, 2 boobs to be removed and reconstructed, lymph nodes to be removed...

Thank you to Caroline, my dear friend, for distracting me throughout it all. She fed me while my ice gloves protected my fingernails and kept me entertained with the latest on clearing out your wardrobe. The bottle of verve champagne will be well served.

The sisterhood has been amazing throughout this, dinner arrived on our door yesterday, thanks to Susie, some fitting floating balloons and chocolates from Susie and Leanne and a welcoming bouquet from Heidi saying goodbye to chemo and the tumours. I received a special angel pendent, notebook and breast cancer funded pink pen from Heidi's mum, Kamilla who has been a raging supporter throughout each of my treatments. Also groceries and sweet gifts from Jill when I was stuck and Carolyn's thoughtful gifts - but mostly your care and support I've felt deeply and feel very grateful for.

My kids surprise me with little moments of care - Alexander came in my room bearing a drink of water and asking how I was feeling....such a sweetie.  I am a lucky person. Thank you for all of your prayers and healing lights sent my way.

With all this going on the cat Charlie decided to show me a fledgling bird, with a suspected broken wing - now what am I supposed to do with that right now. Turns out wildlife Victoria are racists and don't want to know about turtle doves! 'Put it out for the cat it's not a protected species'. 😕 so sad! He's sitting in the garden, we tried to catch him but he went under the house now!

Anyway so now have to get my head around radiotherapy next. Let's get to it then!!!!!

MRI Report - Celebrating

Yoo hoo "FF and his friends" have left the building!!!!!!!  I have received my written report from my lovely and excited GP today and its time for a mini celebration before my last chemo on Friday. (dancing!!!!).

Thanks Heidi for the 1st toast

EXTRACT: 

"When compared to the previous MRI, there has been complete resolution of the abnormal enhancement of the carcinoma in the upper outer quadrant of the right breast. There is no evidence of auxiliary lymphadenopathy. There is no abnormal enhancement in either breast."

MRI Results

So we met with the breast surgeon today to discuss the MRI results. After a long 1 and a half hour wait, It is with some reservation that I can tell everyone that all of the tumours are gone!!!! When comparing with my other breast (non cancerous one) they are now identical in appearance.

I am holding my excitement a little as she couldn't provide me with a written report from the radiologist. Last time she told me verbally, she forgot to tell me the most important thing that my lymph nodes were clear, it was only when I saw the written report with the oncologist that she confirmed it. Also she told me that 2 tumours had gone when in fact it was only 1.

So I meet with my oncologist on Friday morning when we will discuss in a little more detail, and I should receive the report in a week or so....yay! Then I will feel safe to celebrate once I recover from chemo.

I have been a little obsessed with my swollen ankles and calves, so kept my mind busy about the results - no apparent reason for it says the docs. Even though I have never had this before, they can't directly blame chemo as it only showed itself last Thursday - too far away from the administering of docetaxel. It could be the nexium for heartburn prevention caused by the docetaxel, so we are halving the dose to see. We halved the dose of steroids to stop the face flushing - that seemed to have worked well. Anyway so I'm keeping an eye out for DVT, deep vein thrombosis with the swollen ankles - Oh well only 1 more to go!

I should be happy about 1 more but because I know what to expect I am dreading it all the more than any of the other times :(. The accumulation of the drugs has started to make me tired in my bones!

But, I'll get through this and out the other side!

Thank you everyone for your prayers and well wishes - they have worked for me :)

Busy Appointment Week

Coming back from holidays nice and relaxed and with more dr appointments and tests.

I have been busy seeing the plastic surgeon to work out the final plan for reconstruction. Now I don't think I'm that vain, ok maybe a little in taking pride in my appearance, but I would have just been happy with 2 nicely shaped mounds for my clothes and swimmers to look normal. The cancer is the priority and dealing with that. But it seems the breast surgeon is being dictated to by the plastic surgeon, but she seems onboard.

The plastics guy, Damien, showed me pictures of his handy work. He even creates new nipples, do I want to save my other nipple?, he makes them look exactly the same...etc. so I think I am going to be easily pleased by what this guy does - he's a perfectionist and going the extra mile that I hadn't even considered. So the big question take both nipples, create new ones or save one and create one on the cancer side?? what to do.....

There are some treatment benefits by using his methods and the new order. The public system won't use this method yet but it will be the new normal in the future. It means less operations and no need for temporary spacers while radiotherapy is being administered. Spacers can move, get infected on the wounds etc So radiotherapy starts 1st or 2nd week of December. I was kind of hoping that I would have a break over Christmas but it's every day for 6 weeks, but at least I'll be finished with it all sooner.

Normal order: mastectomy insert spacers, radio, reconstruction 1, recon 2
My order: radio, mastectomy/recon at same time (no spacers), recon 2

2 recon ops because they need to flip me over back and forth for my bum and breast recon at the same time. It's too long an operation to do both. I wonder if I'll wake with more bruises than normal.

We also met with Michael chao, the radiology oncologist. I liked him a lot. Although the way he was supporting Damien I started to wonder if it was a bit of a Boys Club. He went through the historical events with us, explained my initial mammogram and ultrasounds and the BIG question that all of the professionals ask me:

'If you have no cancer family history, no lumps or symptoms, you are under 50, what made you go for a mammogram? Was a dr keeping an eye things?' I reply, 'no just started listening to my body and some friends who were impacted'. It was a God Wink and I caught it - what can I say...I am very lucky. A bees fart away from secondary cancer.


A side effect of radiotherapy is it can give you breast cancer!!! Go figure! So the benefit of having surgery after radio is they remove all of the tissue when it's finished, so that risk is taken away. He also gave me his recurrence possibility stat, being 30% without radiotherapy, 10% with radiotherapy. I think this is a good stat and benchmark to be.

I'm off to have my bum ct scanned for good blood vessels for my bum boobs. Then we'll know what angle will be removed on my buttocks.....hah for my bum lift!!!! For someone who would have never considered plastic surgery, I will have had 3 procedures by the end of this.

Another MRI scheduled to see how the docetaxel is working on FF and his friends.

Chemo went well yesterday with my meditation cd, I didn't feel the cannula or needle go into my arm at all. Either that or the skill of the nurse. But I was relaxed. Mum, love her, fed me as I had my boxing gloves on and couldn't do much. John went to work to make up some time. So chemo will hit me Sunday night I presume, then 4-5 days down and back to work Friday. I'm reducing the steroids (dex) to try and reduce my fluidy fat and blistered face (it's not supposed to do that dex is supposed to reduce side effects including fluid retention!) Anyway, I'll give it a go and increase it back if I need to they said. Luckily, Johns photoshop skills meant he could slim down my face in our family portraits we ordered. He gave it back to the photographer to process for our big family portrait for the wall. (Yes ok maybe I am a little vain)..

1 more chemo and 4 weeks to go. Then part 2 of my journey.

Today I asked Andres did he want to see my hair growing but "nah Mum not if its' boy hair - only if it's girls hair". It has to be longer than his hair for me to take off my wig and show him :)

nice surprises

Making a decision to have family photo's done with a wig on my head and a puffy face from chemo was a bit daunting! But the timing was now as the school had a fundraiser to have a family portrait session and given that photographer John rarely features in our family snaps - it had to be done.

 

 

Well it's a place in time, it's not like we will forget it easily, so maybe it will be a momento hanging on our wall of 'when the going gets tough.....' And remind us how we can overcome things as a family.

Surprisingly, we had a lot of fun doing it as a family and we forgot about stuff. 

Even more surprisingly, when we got home we received a call from the photographer saying that they needed to refund us as the school community had donated a complimentary package to us with a special card with best wishes. I was so overwhelmed I had to stop the lady because I couldn't take in any more information she was giving me. 

We are so grateful for the lovely gesture and when this disease isolates and makes everyone feel uncomfortable it's things like this that bridge that gap of humanness.

Holidays!!!

Holidays!!!!!

Yay finally on our holiday on the plane writing this. It was the first stress free travel with kids we've ever had. Probably bring packed 2 days before and of course John's packing database has made a huge difference....

A closer substitute for our cancelled Disneyworld and the U.S but what we can manage given my 3 weekly treatment plan. I craved for some warmth and family time so Port Douglas it is ......30 degrees everyday and sunshine!!!!! 

We had a great time relaxing by the pool, not thinking about treatment plans, side effects and outcomes. It was on my bucket list to take the kids snorkeling on the reef (a bucket list I wrote before I was diagnosed). So we went snorkeling on the Great Barrier Reef searching out Nemo, no cooking, lots of seafood and reading. We saw crocodiles on a river paddle steamer cruise, Andres was very excited he got to skipper the boat, and so did Alexander.

So we didn't see a lot of the sites, the Daintree, Mossman Gorge etc
were all there to be experienced but an excuse to come back when we are more energetic. 

Managing the wig and my baldness worked out okay in the end. No one looked at me weird. I bought a chemo cap from Canada the is like a funky UV swimming cap with little ties that hang down the back. A mum actually invented it to protect her boys heads from melanoma when they are at the beach. They breath and dry and come in lots of funky coloured and designs. It's a great resource I'm not sure many people know about them. Www.nimmo.com. Anyway I wore a scarf and my hat the rest of the time.

Now we are back to specialist appointments and tests and chemotherapy again. 2 more to go of my healing chair and 4 weeks in time terms.

Plastic Surgery and the order of things

Plastic Surgery Planning

Yesterday was day 7 since chemo and the first day I felt 99% well. Yay - although this was a longer recovery for some reason. My body felt better at day 4 but my razor blade mouth, tongue and gums, eye watering, nose drying and a new one - red flushing rash on my face. Yay - that goes well with my hot flushes of enforced menopause But the best thing.....I don't need to use blush anymore!!! So when you have 1 problem, it's fixed by something else yet to come !!! Ha, ha. Chemo makes your skin go a bit yellow so I've been using more blush than normal, until now. :p

After the appointment with the public hospital plastic surgeon, waiting 2 hours and being bumped to a different dr's list, I started to feel nervous about public. Then when meeting with the plastic surgeon, I got the feeling they wouldn't look at anything outside the way they have always done it and the new technologies available were not yet allowed in the public system.

In the meantime, after seeing Damien grinsell, a plastic surgeon privately, he had taken the initiative and contacted my breast surgeon for a discussion and had written a detailed report to my GP. Even though I hadn't decided to go with him yet and had a tentative 2nd appointment booked, by the time I got to see my breast surgeon privately, she was okay with everything that he was proposing, even though the order of things will be changed on his request. 

I was stressed about asking her about changing up the order, whether she could work with him, can they work in the same hospital etc.,. But it was all taken away, when she opened with that she had spoken to him and she is happy to work with him and even suggested if I'm happy not to keep looking as he is one of the best. He teaches in internationally and has championed this method here in Australia. So everything fell into place and we are going with the private system and I will be wearing our trip to America on my chest!!!! Ouch...$$$$$ or Alexander's 1st year of high school tuition fees and then some....😯

My priority was just to get the cancer out of my body, but then you also want to look as normal as possible under clothes. And then your next consideration is minimal surgeries, best up-to-the-minute methods being used to minimize management impact on your life long term. Then there's implants versus autologous (my own skin/muscle) which all going well, will require no future maintenance like implants do. I just want minimal surgeries and get it finished with an end date. Albeit, a major surgery with a longer recovery, but then it's all over!

So the Order of things has been changed as Public won't do radiotherapy on an intact cancer ridden breast it must be removed first, so this is a new technique where everyone is in agreement that it won't make any difference to getting the cancer cells and Damien has performed 31 of these so far with good results. I guess it's a bit like me having had chemo first (neoadjuvent) before mastectomy which is a new technique so they can see how chemo effects the tumours. Otherwise they are only guessing by taking it off first and its an insurance policy of chemo after mastectomy as they don't know the impact of chemo. New order:

- radiotherapy, December/January??

- surgery February 2016

It sounds like this will speed up everything and surgery will be done all at once rather than a 2 stage process. Well I'm just guessing, so a meeting next Tuesday with Damien Grinsell will confirm everything and book it all in. 

Anyway until Tuesday, I'll know more....

Wednesday 14th October

Today is day 5 past my chemo day in the 'healing chair' having received my healing elixir! Positive attitude meditation is helping heaps. A cd to help you through treatment through visualization and relaxation at the time, before and afterwards. I didn't even feel the needle and cannula being inserted, so it was either the skill of the nurse or a bit of both. Here is me with my ice gloves on!!!! Brrrrr!! I needed the meditation to cope with my frozen fingernails. 

Last time, this day I was back at the hospital desperate for something for the pain, but I have been keeping up a base line of Panadol and it's worked!!!! I only have a bit of pain but I am managing it well. 

Mum and I went for a walk today to enjoy the beautiful weather. Yesterday I sat in the sun enjoying my new day bed that John bought me while Elizabeth (yes my cleaner!!!) cleaned my dirty house!!!  Life is blissful and everything is right. While sitting there I created and coloured in my treatment plan in a visual drawing. I'll colour in the tumours and treatments as they are completed. 

So sitting in the waiting room at The V, waiting for the plastic surgeon. I've already seen one guy privately  who thought he was 'one of the best', I'm sure he is!!  So this is the public guy so I'll have something to compare it all with. Still to decide public vs private. Very confusing - except for the dollars, that's unmistakable.  Plastics only work with some breast surgeons and plastics only work out of some hospitals but not others. 

There's so many different methods to choose from - depending on how much surgery you are up for. So far I'm thinking I might have bum boobs!!!! A buttock lift at the same time - by default. So they'll use my buttock muscle inside my boobs instead of silicone implants. At least it will grow and change with you like they normally would. 

Oh well - we'll see what he says. 

My Bald Head

So I'm checking my head on a daily basis for some hair growth. Depending on the light I think I've grown some, and then the next day - hmmmm.... not so much.

Tuesday this week, I received a call from the Breast Surgeon, Christina Foley.  She confirmed the MRI results again as our meeting with her didnt go so well and we didnt seem to get all of the information.

She did confirm that my lymph nodes are normal again!!!!  This is the most important information she should have told us, but neither John or I can remember her saying it. It was only a passing comment by the fill-in oncologist, so I wanted to hear it from my breast surgeon first hand before I got too excited.

It is so important because it means that the cancer cannot spread into my body any further, it is contained within the breast!!!  The lymph node is connected to the blood circulatory system. The MRI shows no cancer in them anymore, my 2 nodes show normal tissue.  Chemo has worked!!! She said that this is one of the best results they've seen. She did incorrectly tell me that 2 tumours had disappeared, there is actually only 1 has disappeared. I'm not that disappointed considering that my lymphs are clear.

It means that I can mentally re-stage myself from stage 3 back to Stage 1 - even though they wont do that. They will continue to treat me as per my original diagnosis, but it is a huge mental weight removed from my thoughts.

I did promise you a bald photo........he, he.. I even look that chubby in the face straight after chemo and the neutrophil injection that poor John has to give me.

Bald Photo of me I promised

Appointment with the plastic surgeon on Tuesday. So the plan is for a 2 staged mastectomy.

WARNING - TMI What this means is I will have 1 boob done in January using a skin sparing technique.  This means they just empty out the mammary contents but keep the pouch of skin and fill it with a saline bag. Kind of like an immediate reconstruction but not the final result. The reason they do that is so it saves my skin rather than cut it all off. The saline bag is used rather than a proper reconstruction because I have to have radiotherapy everyday for 6 weeks on the chest and armpit and it doesnt go through silicone and it would shrink the skin slightly and damage the reconstruction.

Then when that's done, the final part of my journey is the second surgery, where they will remove my other breast contents and either use some tissue from somewhere else on my body or use silicone implants and get both breasts even and complete their final look.  Those options will be discussed at the meeting on Tuesday.

I found an interesting article on fibrocystic condition (lumpy breast). It explains how these lumps can mask cancer or and further investigation can be dismissed to menstrual conditions. The article explains how they can turn from benign to cancer. Anyone with lumpy breasts, in my opinion should have an ultrasound as a double check. I believe that this is how I developed breast cancer.

http://www.medicinenet.com/fibrocystic_breast_condition/article.htm

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 :(

#4 Done and Dusted

Yay! Goodbye cyclophosphamide and Docerubicin!

Today my neutrophils and white blood counts were back to normal range....this was good news so I could get the final of these drugs over with. I think I am getting used to them though because the fact that I can type and read my iPad means my head isn't as bad as last time. I hope I haven't celebrated too early.

Chemotherapy was uneventful except that there was a risk that they wouldn't let me go ahead again. Oh and I had an appointment with the awful oncologist - but Diana at reception at the cancer centre, saw my face and asked if there was a problem. She said she could change me "as I'm more comfortable with a female oncologist" 😉 "yes, yes please". So I get moved to the doctor I had last time and thank her profusely.

The last of the 2 👿 drugs!!!

Part of my support crew, my Mum 💕

The other part of my support crew, hubby John. Fed me ice-cream 😙

I brought home a goodie bag with an injection to give myself to prevent my neutrophils from plummeting so far this time......now that activity will be interesting. The other is some new drugs to take before the new chemo drug #5 to reduce side effects - doubling the steroid dose and effecting my bones by Stimulating bone marrow as this one also reduces neutrophils and white blood cells. 

We have a busy weekend, so have to put my 'big girl panties' on and get out there with a smile on my face and a bag of nibbles and bottle of water.  Starting with Miss Jana's gymnastics competition at 8:15 am, for which she practices day in and day out on our dining room floor. When sitting quietly on the couch, a pair of feet smashes over the cushion scarily close to your head as she does a 'bend over' or 'back hip circle' ??? - I should learn her manouvre names better.

The kids are good, home life is back to normal, I'm still yelling at them to get ready in the mornings. It's still nice that Andres climbs into bed with us sometimes to chat. He loves drawing air pictures to explain things to me. When I wear only a scarf around the house and rest my wig and scalp for a bit, it seems to effect the kids a little. Last time, we were having a cuddle in bed, Andres said "I can't wait for the cancer to be gone, so you won't die Mum".....what do you say to that. "yes that will be a good day won't it" and gave him a hug. The night before it was Alexander who came and sat with me and said he can't wait for the treatment to end and fir IT to go away.