With Gratitude

During this last 10 months I have experienced every possible emotion possible but fear was one of my most overwhelming emotions by far.

During this time I have also experienced a lot of love, warmth, acts of kindness and messages of encouragement from my friends and family - which has been my second most overwhelming feeling, touching my heart deeply and profoundly - something I haven't experienced in my lifetime.

Combined together this brought me HOPE. None of us could have guessed the outcome of this experience, although my prognosis was always good, no one was promising us anything. We could only have hoped for the complete pathological resolution that was mine.

Thank you from the bottom of my heart to you my cheerleaders and supporters - my family and I have always felt loved and supported like a big warm hug around us from all of you. There are no words big, deep or meaningful enough to show our gratitude.

An angel here, an angel there,
I'm surrounded by angels everywhere.
When I'm in the middle of a terrible storm
They come with their candles to keep me warm.
An angel to comfort, an angel to guide,
An angel to fill that dark hole inside.
An angel to cry on, an angel who cares,
I'm surrounded by angels, everywhere.
The angels who reach out when times are rough
Who'll listen to my heartache
and all kinds of stuff
Bright in the sunshine and in dark of night
The angels surround me with comforting light.
I guess God is busy and can't come on down
To give me a smile and take care of my frown
So He sent a few angels to brighten my day
And help to carry my burdens away.
So thank you, dear angels, more than you'll know
For watering the happiness and making it grow!

One of my Angels of course was my Mum who has flown down and been with us through each treatment and looking after the kids with John each time. I look forward to future visits and time together that aren't treatment related. She was getting them moving each morning for me (like all of us mothers know how hard that is) throughout treatment. But Mum worked like a machine keeping our little household running despite my absence.

From Kamilla 'you are loved'Angel


Flowers from Carolyn and magazine with shoe porn supplement

Flowers from Lynda, sweet lemon cake and a scented soy candle

Sunday Again

Where did March go? Gosh it's like having babies where each day turns into another, 16 days post first surgery but feeling my glute muscle/buttock area is screaming for attention! Pain killers are running out, drain still in. But it's looking promising for a removal for Monday I think.

Have started googling mastectomy side effects to explain how my shoulder area is so stiff and underarm is so sore, stabbing pains are nerves rejoining themselves (so I've read). It really would have been handy to be given some information about what to expect post mastectomy.

I received this from 1 little treasure:


And this from another treasure:


While I was in hospital, the administrator asked if I would contribute my story to their consumer brochure. I'm not keen, includes photograph, which I've been going wigless a bit more lately since having a long stint in hospital without it, plus I don't think my story is any more interesting than others I have met along the way. The only way I would consider is if it can help raise awareness for other 40-50 year olds in checking their breasts. I'll see how I feel I guess.

Plus some lovely gifts while in hospital, thank you to everyone who visited and broke my boredom....Heidi, Susie, Leanne, Mum and Dad, Carolyn, Sylvana, Tessie, Betty and Angela plus my little family coming and eating my chocolates. plus all of the messages and flowers, magazines and my Coles online fruit box from Tessie. One morning a nurse came to me and asked if I liked the food from the hospital or not, and in comes a trolley with a Coles online box full of fruit. The fruit was yummy snacking on throughout the day. Some beautiful flowers from my work, the Axion guys, Carolyn, john and the kids, Leanne and Susie, Endota spa voucher from Silvana, Angel of love from Kamilla - I was very spoilt. Some chocolate and cheeses, jams and sweets from Sonia :) yummy, pj's, mags and collection of things from Heidi, flowers from the Bookclub gals, cupcakes from Mia Faulkner, home cooked dinner from Susie and Lynda.....so many people to thank for supporting me and my family....not a day goes by that I don't give thanks for being so blessed :)

Road to Recovery

Day 8 - Saturday

It has been a monumental experience this hospital visit. Very emotional and restful at the same time.

It has required me to say goodbye to the breast that fed and nurtured my babies. Be cut up that little bit more - for someone who never wanted plastic surgery my body has been pretty well rearranged from its original shape.

To receive the news of the pathology from the mastectomy - wow! At the last appointment before mastectomy, with my breast surgeon, she thought it was unlikely that there would be a 100% resolution - She said maybe 10% residual cancer cells in the tissue. This result has hit me like a brick plus the unexpected result of my train ride ending here - for cancer anyway. I never thought of how I would feel if the pathology result would be 100% clear - I guess I never allowed myself to think it. My breast surgeon is playing down her role in my mastectomy and recon.....it's all about the reconstruction, even the aftercare is now my plastic surgeon and his wound nurse. He even controlled her drain and dictated when it came out etc. but she saved my life looking after me from the first diagnosis until now (8 months). She will continue to liaise with oncology as I'm with them in the public system.

So have 2 multidisciplinary meetings happening - 1 in public, 1 in private.

Although mastectomy no.2 will be in July we are thinking, so the wait for pathology results of that breast might prove a little nerve racking - there should be nothing according to all imaging results.

Day 9 - Sunday

Today I go home. Leaving with 1 drain from the donor site still in. I am armed with all of the paraphernalia to change and care for it - it's like a newborn baby that needs to come everywhere I go, needs measuring and changing.

Still trying to figure out how to wear it in clothes - it's not in the most convenient of spots on my thigh.

I keep getting up and dragging it behind me in its bag before feeling it attached to me....ouch!

The kids are glad I'm home and Andres keeps delivering a glass of water in a'mummy glass' - wine glass! He made me another 'I love you' card last night. Very special.

I received a get well card from the kids school....

uneventful Day turns Eventful

Today was pretty uneventful. I had another drain out so just Lewey left in my bum now. The surgeon was good enough to put the drain through my side hip so it's not too bad sitting and lying. They wanted to kick me out but I still don't feel confident just yet. 1 more day will make the difference putting me in hospital for 7 days, which is still quicker than the 8 days originally told me. So I'll go home Friday morning. The nurses were saying that the surgeons prefer for you to be home with your own bugs rather than introduce more from hospital.

Although it's 4:30 and I feel like I desperately need to feed a baby. Quick get me one oh but hang on I need a nipple....

Since after the drain was removed I seem to have doubled in size!!!! Gosh I knew he was going to give me a decent size but this is ridiculous. Dolly Parton eat your heart out!!! The young nurses were ok with it but it just so happens that a surgeon partner of Damien's is in the building. So he's going to have a look. I don't think there will be much sleep tonight.

At least my arm came out of the sling so I can move my arms and put them in a loose sleeved shirt.

I had a visit from Carolyn bearing a Marie Claire and some beautiful flowers that I must find out the name of them.

By 6:30 pm the Surgeon had been called, the unit manager nurse was involved and The surgeons partner was back to look again. He said he wasn't that concerned as all the signs were good for the health of the donated flap, but how big could it swell to was the question.....I had images of it getting so big before popping like a big pimple. Luckily I had the 'shoe porn' (shoe fashion magazine) from Carolyn to keep my mind busy.

The surgeon arrived and by 7pm I was in theatre. I moved across to the operating table, the usual crew were sorting instruments, the anaesthetist was looking for veins, the assistant anaesthetist was giving me oxygen, the assistant surgeon was positioning me on the table and pulling my arms out of the gown. It was fast work. I had a banana at 3pm and while I was being assessed by The staff, sat there inhaling through my nose, my lovely smoked salmon on potato mash on steamed veges and creme caramel dessert, which I was told I could not eat while we waited for the verdict. As it was, I was lucky that the anesthetist was an old pro from the Alfred who had heaps of experience in emergency anesthesia - like someone eats a banana a couple of hours before surgery.

In theatre, while everyone was working furiously, Damien stood in position and held my hand to calm me down, which was very sweet. It was quite a bit scary wondering what they would find, what was wrong etc. if the donor flap fails, I won't have any other option but implants, which I don't want as I want my own tissue to grow and change with my body and to not have to have any more surgeries/replacements in the future.

At 7:40 pm I awoke on the operating table and they swung me across to my bed via a board under me. I felt fine, the relief of the reduced boob was instantaneous, the pain and discomfort gone. I had a drain back in that I could now see. My surgeon phoned John to tell him what happened but he doesn't know why. Out of all the operations he's done as a surgeon, he has never seen this before and doesn't know the cause. Because of his perfect record with his results, he is not impressed - yep I'm the trouble maker!

I was up and going to the toilet 1 hour afterwards, but tied to the bed again with the leg pumps and a drip in my hand and my 2 drains.

The reason for the return to surgery was not a 'bad' reason. At least the donor tissue and site was alive and well....although there will be some anxiety when removing the drain next time.

What an eventful day!!!

The End of Cancer - hit me like a brick

Tuesday
Today I had 4 surgeons visit and check out the handiwork, I'm not sure how many actually worked on me that came to look. My Breast .Surgeon and Plastic Surgeon obviously but not sure about the registrar, Chapra And Scott? It could have been some guy off the street for all I know!

A drain came out and my cannula too. So just 2 drains left hewey and Lewy now. I'll have at least 1 come home with me. I still have the leg pumping machine and compression stockings on - joyful in this 40 degrees. I have a balcony room, which is huge for 1 little bed, with nice views of the gardens to the side and across to the Asylum in Kew to the right. - at least I don't have to share like some people do.

My breast surgeon came in with a printed copy of my pathology result. Heidi had kindly brought up some things for me that I desperately needed. Who knew that short pj shorts and loose fitting singlets would be the go to clothes, and a wonderful cup of real coffee, so she was there when Christina gave me. she said it was the best result they could ever have hoped for and deliver to a patient.

Mum and Dad came up and I was so overwhelmed when I was reading it to them, that I started to cry. I realised all at once in that split second in time, that this is the end of cancer for me!!! I hadn't played out the likelihood in my head of a 100% CPR result. The breast surgeon said she hadn't seen a 100% result so much and was expecting maybe a 10% residual.

Ever since that day on 5 June 2015 at the breast screen clinic at St Vincents Hospital, and the breast surgeon, Christine Foley delivering the news "you have breast cancer" and the nurse who burst into tears as well - all the treatment, the fears, the anxiety, telling family and friends, why me, the wakeful nights and silent shower tears.

The experiences since then making me a stronger person, and the experience of cancer and losing my best friend because of it. The experience of another through her blog and eventual passing in Simona, - leaving behind a loving family and 3 year old baby boy. To my lovely friend Lisa for her strength and common sense advice for me and Maria pushing me to check things out after telling me about her life without her mum because of a late diagnosis and sitting with Cora for her chemo treatment - all pointing to and alerting me to my diagnosis. An EARLY locally advanced one at that. If only it was earlier then I may not have needed chemo, but lucky it wasn't later!!

My pathology report states a complete Pathological Response to the invasive breast cancer and I thought there were 2 lymph nodes effected, it ended up being 4 out of 15 lymph nodes. So I had 11 more to go before it would have been rampant. The result was "no evidence of malignancy in 15 lymph nodes. 4 nodes are partially replaced by scar but no residual malignancy is seen in these nodes (0/15)".

I have been in good hands along the way, even down to the pathologist who was used for the mastectomy pathology. My B.S said that he is the 1 pathologist who would suggest something was not quite right with the result and she would follow his thinking. It seems my plastic surgeon and radio oncologist are leaders in their field also and the hospital I'm in is a specialist breast hospital with well trained nurses for being doctors' eyes and ears.

I was lucky to be eligible for the study for the 'new treatment sequence protocol to reconstruct locally advanced breast cancer' which the P.S I happened to go and visit while deciding between public vs private happened to be championing it. The sequence of the treatment has meant we could watch the responsiveness of the chemo and radio, and I stayed in tact for the duration rather than dealing with the cancer psychologically, physically and emotionally all at once with immediate mastectomy. Dealing with the treatment, with a concave chest, which is more difficult to reconstruct would have taken atoll.

Well now I am no longer eligible for the Penelope B trial, where they were going to take my ovaries or at least inject me each month to suppress my ovaries. I looked up the patient profile and I no longer qualify for it - the patient has to have some residue cancer, of which I have none :). The oncologist did say that if I didn't qualify when the pathology is in that's a good thing.

Operation Friday

So we get up nice and early at 5:30 am, I didn't need an alarm that day!

I apologise for the detail but as a secondary and boring function of this blog is so I can document what happens for next time (my left side).

We head off to the hospital with a bag of useless items quietly stressing about the traffic. I had on my meditation to try and relax and calm me, but my nerve endings were complaining and I was shaking quietly. The anaesthetist asked me to come earlier to get paperwork done as I was 1st on the list. At 6:45 am I completed the paperwork and at 7:40 am I was waiting in the theatre holding bay in my theatre clothes wrapped up in a warm sheet that was killing me from my hot sweats.


My 'Hilton' for the next 8 days

I was cannulised which hurt like hell from my anaesthetist, the only painless cannulas I've had from males (sorry to be sexist but it's true) are the ones from those that work in the cancer centre. and my breast surgeon came to see me to ask if I had any questions, then The Plastic Surgeon came and drew all over me with a black texta like I'm some kind of art project, well essentially I guess I am for him.

They wheeled me in and I don't remember much else. There were a lot of people in the room probably 15-20 including an assistant surgeon for My P.S. And that was that.

I woke up in recovery and 8pm that night. The mastectomy part took 2 hours removing my axillary nodes from my arm and breast tissue. She had a quick look and could only see inflammation - no tumours she will wait for the pathology report.

The P.S phoned John when his part was done and said I was a difficult patient. I didn't have enough vine after all, my scans picked up a vein but it was too short and not connected from 1 conduit or something. So he had to find another one and attach them. These veins are attached to my new tissue and to under my arm. My arm is in a sling to stop me pulling on this muscle while it is binding. I swear nothing is straight forward with me - it is frustrating.

Then I had my journey with pain killers, sweating profusely from endone and sick, dizzy and nauseas. The anti nausea medication took the edge off but not completely. On Saturday and Sunday I spent most of the time lying around with no appetite for eating. I was so sick and miserable. Tried tramadole to try and avoid the effects but made the nausea 5 times worse. I felt I needed to give my body a break - it had been fed a raft of drugs and it was full. I had been taking whatever was on offer. So tied to the bed with catheter, 3 drains and pumping leg machine and hot sweats there wasn't going to be much joy. They also checked the temperature and heart rate of the flap every half an hour for 24 hours - do you know how loud those dopplers are right next to your ear? It was like I had a baby all over again, waiting with anticipation to hear the heart beat of life.

http://www.thewebelongproject.com/blog/open-letter-mastectomy-patient
This letter I came across on a breast reconstruction group I'm in, very timely for me. (link kept crashing when I posted it, might have to copy and paste it into a browser Search to read it.

My P.S. came and saw me Saturday and Sunday. On Sunday he brought in his little girl, she was adorable through my dizziness. She was about 3 I think with long flowing curls and was checking out my flap as well with Damien. She will be desensitised to this stuff when she's older. At some point she might wonder why Daddy checks out everyone's boobs. My breast surgeon came in to see me on Friday night after her surgeries to give me an update as well. A lot of nurse and staff asked if I remember meeting them on Friday night but I didn't. I was responsive but there was nobody home. Apparently 1 nurse even bathed me but I don't remember - I remember brushing my teeth in bed. I had a nurse by my bedside at what felt like the whole time which I guess is fairly normal with recovery. She had an unusual name similar but not to Emma Lou or Emmy everyone called her.

So that was my weekend - finally Sunday at dinner I started to feel better about things. I stopped feeling so miserable and negative. There was some concern when they put the catheter in surgery, that there was blood in my bladder. I started asking questions about my medication, side effects etc, I didn't take much on the Sunday and was comfortable. All of a sudden I became clear headed and hungry. Although my first meal for the day was a Thai fish with cous cous, probably not the best choice of food when you have a sensitive tummy - I just had a taste of everything and ate my jelly. I thought I'd be careful and not push my luck.


Happy Flowers from John and Kids

From then on I had a dry biscuit with most of my medication and refused one medication which was tagine - a slow release narcotic. I just didn't want to go back to those dizzy and nauseas 2 days. So they offered me panadol every 6 hours, but then I got worried that it might hit me all of a sudden before my 2nd operation with no options left. So I called them back. Apparently it is a dangerous drug and there needs to be 2 people when administering and have to see me swallow it.

One of the many beautiful nurses brought me in a midnight feast around 11:30 on Sunday night as I was supposed to be fasting for my 2nd op the next morning at 7:30 am. what a sweetie, and if I was awake any time during the night they would offer to make some tea for me



Gosh, so I don't know how expensive they are but they had to get another one and supervise me. I started to become a high maintenance pain in the butt, but in some way less so. They pulled out the catheter and the drip so I was a little more free to move around with my 3 little buddies in tow (drain bottles - Huey, Dewy and Lewy) the nurses were lovely and showed me how to manage myself when getting around with them, bathing etc.

I have my arm in a sling while my bum tissue knits with the abductor muscle so little movement with my arm for 6 weeks.

Big Day

Today I'm back at the cancer centre, but thankfully not for chemo but an appointment with the oncologist. They are checking my bloods to check organ function I guess after the chemo. Let's see what happens when I talk about the toxicity and side effects I had. It's almost not worth bringing up for the predictable response!!

I've had a lovely half hour massage so I'm pretty relaxed, yesterday I had acupuncture for my legs also I had some treatment all over in preparation for surgery. Apparently it can help control pain and repair after surgery.

Then off to work to catch up and some lunch with the guys for my last day.

Then another appointment before going home to celebrate my baby boys' birthday - again!!!! The Andres festival continues. At least he was made a fuss of before my 8 days away from him. He will miss his mum more than the other 2. They will too but he's still little.

We showered him with more dinosaurs today. Having purchased his gifts early so I didn't have to worry about it amongst all of this, so I didn't anticipate all the dinosaur toys he got from his friend party. Oh well what do you do you can always have another dinosaur :)

Still nervous as hell about the op and recovery and what to expect, but at least I am busy enough to distract me. I'm rushing around doing things, I still haven't packed either. It's probably the only thing that I haven't researched and letting it happen. I have read a little bit about it but not much. It's all too grose really. I'm still not really 100% sure what my second operation is on Monday. I read up on my plastic surgeon and he was part of the team that sewed the donor hand on to a plumbers arm that hit the news some time ago - that gives me great comfort in his abilities that's for sure - which he has been telling me all along.

I was talking with some school mums today and how I will be able to point to my chest and say 'kiss my ass' - lol....It was a nice little group hug before leaving them.

I have coloured in most of my treatment plan - only a few more pieces to be coloured in.




Now that I'm looking back as I'm nearing the end of this, I realized how sick I was sometimes by photos or things that happened along the way....and how normal I always pretended to be. This was my coping mechanism - act as normal as possible then I will be normal again. Playing games in my head with what I was doing and trying to normalize it e.g. The day spa (radiotherapy) in my waffle robe having a tan ha, ha. Or the pub crawl at Christmas time, walking the 2 flights of stairs 4 steps at a time before my chest hurt and I was out of breath, walking from Fed Square to Flinders Lane almost killed me let alone the pub crawl across Melbourne to Lonsdale Street!!!! and how sober I was despite the alcohol I was drinking. Taking Alex canoeing was that little bit more crazy - huffing and puffing as my eyes dripped constantly carrying the boats and getting a good workout with the rowing.

Wearing a wig the whole time and not joining or listening to cancer groups in the early period - always mixing with 'normal' people.

So I just finished my appointment with the oncologist and yep I was right - deny the side effects, deny, deny, deny! Anyway, she has a new suggestion for me in this treatment plan to remove my ovaries or have an injection each month until they are sure I am in menopause - geez Louise - I wasn't expecting that! It turns out that I am anything but 'normal' with everything. Because I am old enough for menopause but they don't really know if I'm pre or post menopause it impacts the ongoing medication or hormone suppressant they give me. They have just found in a study that the post menopausal medication is far more effective across the entire body for blocking estrogen. So they want me to participate in a clinical trial with this but would need to ensure my ovaries didn't interfere. Another decision to be made at a later date thank you very much.

Anyway at 6:30 am tomorrow we will be at St Vincent's and Mercy in east Melbourne - my 'Hilton' for the next 8 days :)

Hurtling to the Next Stop

Today is 3 days to go! This train is speeding to the next stop faster than I would like it to. It feels weird to have no upcoming events or busy weekends to distract my mind with.

I am being kind to my body in preparation. I'm juicing again, still slathering my radiotherapied skin with coconut oil and moo goo, aerobics each morning and getting some mobility range back into my radio'd shoulder and 'preparing for surgery' meditation twice a day - the Bluebell Wood!

Meditation is helping heaps - I've stopped chewing the inside of my mouth subconsciously :)

The edema in my feet and calves are still tight at night, although I've been able to wear normal shoes which is so much better. I've pulled back on the endone in preparation for surgery. I had some acupuncture with laser instead of needles and it seemed to help heaps. Actually falling asleep easily and not thrashing the legs around so much at night.

I have been gradually preparing the kids for my absence, although I seem to be running out of time to do things. Alex stayed home 'sick' on Monday knowing that I was not working that day. I think he wanted to hang out with me for a bit before I go into hospital. They all seem to be coping okay otherwise. We celebrated Andres' birthday early so he was happy. We'll have another happy birthday on his birthday night. At least Nana and Poppy will be here to celebrate his birthday with him too.

A wonderful surprise showed up on my doorstep last night from 3 of my girlfriends, a Sussan voucher and a triangle pillow - I was very touched by the gesture and was only talking about getting a triangle pillow yesterday. The power of thought! So thank you lovely ladies, Carolyn, Sonia and Jill, it felt like a bit warm hug going into this next experience.

I cant think straight to add much more to this blog entry right now, there is too much going around in my head :( I'm trying to pack for hospital which is not easy at all - what to take????? I need to google.

Night, night.