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.

Surgery Preparation

Today was my final appointment before surgery with my breast surgeon - 2 weeks today to go. She wrote down all of the side effects/risks that I may have. I will have to wrap my arm in cotton wool for the rest of my days to prevent lymphodema. She did tell me that the best scenario would be no cancer in the tissue but that doesn't happen very often. It might be 10% residue left in the tissue they remove and 90% clear for example. The good news is no more mammograms. As there will be no more mammary tissue it won't be necessary. It will just be by feel as only the skin will remain, and if there is recurrence in the saved skin they will feel it. But having said that Michael Chao, the radio oncologist said they are doing ct scans to monitor the tissue.

After that I went and felt some more boobs at the Reclaim your Curves at Think Pink. It's a reconstruction group and I met someone who is also a patient of my plastic surgeon, Damien Grinsell. She showed me his handy work too.

I managed to squeeze in some work today as well. The guys are very flexible with me at the moment.

I decorated a cake for Jana and was thinking about my upcoming surgery a little too much - nipples...

Peaceful Places and Rejuvenation

Well what a busy week I've had. Now that the kids are back to school and loving their new teachers, I have been joining some 'cancer clubs'. Taking a bit of time out to get ready for surgery.

I headed off to the podiatrist to see what she could do with my half off, half on toenails as well as if she knew what I could do about my edema in my feet and legs. She cut off 1 of my big toenails, the other one will live semi attached for a little while longer. Sleeping is often aided by a little white pill which I could become addicted to. It is an amazing feeling as I drift off to sleep on soft fluffy clouds where I don't feel the legs any more....hmmm struggling to sleep with just panadol so trying to space out the soft fluffy cloud sleep every couple of days.

I've been having oncology massages and attending meditation and yoga at Olivia Newton John wellness centre. I also snuck down to the Peninsula Hot Springs during the week. Thank you to Heidi, Evan and John for rearranging your schedules and providing your beach house the night before to accommodate my day of relaxation, I am forever grateful. Dinner seaside at the Two Buoys was a treat.

(Picture)


It was a great experience with a dozen women from the area with various stages of breast cancer. It was humbling to hear their situation, while their situation was never told to me in a direct conversation but rather in humorous snippets and random jokes where I pieced together where they were at. They were the veterans amongst us who have battled long and hard and some on their second round. Except for a local woman who wrote a book about her 'journey' for which she is now cured and living her life. she was a guest speaker. It seemed wrong for her to be telling us her story, how sad she felt and her problems along the way, when I felt that many of the women there were more worthy, more inspirational and more humble in theirs. I still bought her book out of curiosity for which I was sorry I did after I skim read it. But perhaps her story has a place with well women who know someone. We are all going through this differently and some ride it through better than others I guess and she was so moved by her success she wanted to write about it.

We did some art therapy, looking at prosthesis or 'chicken fillets' (which I gratefully don't need) - there were chicken fillets flying around the room for people to feel, coming out of bras for comparisons - gosh a whole different world! Then had a lovely lunch before soaking in the hot springs amongst the trees and the birds (it wasn't that serene because the ladies were a bunch of talkers). I could have snuck off but felt privileged to be in their company. The spring at the very top had an amazing 360 degree view of the surrounding countryside - definitely a place to come back for and include a massage.

Here's some of my Art Therapy, I'm no Picasso but it was fun making it.....my crayon piece is called The Outlook. I modeled it off a beautiful place called Teddy's Lookout, near Erskine Falls in Victoria, a place that I think about with my meditation cd. It's a picture of me there after all of this is finished.

The other piece is a quadrant of the seasons. I stuffed up the seasons but you get the drift - we made it with paper play dough - now that was fun and very tactile. Again favorite places or things I love about the seasons in Victoria. To my crafty friends - don't look too closely.

And we snuck off to Point Lonsdale where we celebrated the end of radiotherapy - here are some of my favorite photos that remind me about some important things ......

Visit to Olivia Newton John Wellness

So here I am back at Olivia Newton John Wellness Centre lots of new faces in the revolving door of the waiting lounge, a new puzzle being built. I've had my appointment with Michael Chao, the radio oncologist. What a lovely man. He talks to me about my whole treatment, are confirming what Damien, the plastics surgeon and the breast surgeon, Christina Foley are doing. Specifically about the cancer and what they are hoping for. 

Micheal told me today that the 3 of them and probably an oncologist from chemo have been meeting and discussing every step along the way (I love that he sums up the whole process). 

The best case scenario is that after my mastectomy, the pathologists find nothing to test in the tissue. Which means a total cure from their point of view. He also asked me to participate in a study which will confirm this new order of things. It will mean that they need to document the breast tissue before during and after the mastectomy and reconstruction. They will take photos and perform CT scans each time to watch the tissue. I welcome doing my bit if it helps others in this process.

He explained that doctors are suspicious by nature so need data to be convinced and I will provide that. It also means that they watch me a little bit closer afterwards for some time to come which is a good thing. There's probably a lot commercially at stake as well. Tissue expanders have a place in the old regime, where they will no longer with this regime. It could wipe out a whole product in the long run, but I guess there will still be old fashioned doctors who don't like to change. The new regime means much lower impact physically and psychologically for the patient. 

Michael seemed very excited about it all in anticipation. I told him I'm not mentally ready yet and he said 'well we are ready so that's a good thing'.

Here is where I sit writing this instalment......aaahhhh.

Yesterday, I had my final meeting before my big operation with my plastic surgeon (PS) Damien has pulled back a little on the plan. He has decided to not do the nipple recon in hospital, but I will have another operation on day 3. They are concerned with necrosis of the skin after it has been radiotherapied and given my boobs are going to be the poster girls, they are being extra cautious. Ha, ha!  So the skin from my buttock is going to be sewed in like an extra flap, it will sit there until they decide my original skin will survive, then day 3 they will remove it if they don't need it....it will be very white if they decided to keep it as it won't match my new radiotherapy tan......Oooohhh - too much information for some...sorry.

So Damien man handled me squeezing my butt and squeezing my boobs, trying to get an indication of size. He has pulled back on size too from a small C to a good sized B. Well that's what I asked for in the first place anyway. Nipple reconstruction will be done later down the track - if I still want it I guess. 

So after meeting with Damien, I headed down to Think Pink and met with the Pink Sisters. They are a group of under 50s with breast cancer. The guest speaker was a girl who was 2 years out of the process. She came to show us her boobs. Well I have to say that once you've let every man and his dog feel and squeeze your boobs throughout treatment, they don't mean that much to you any more. And after with no sensation in them, for the wearer, they are totally de-sexualised. 

Anyway, so I spent the morning squeezing and prodding this poor girls breasts who I'd known for 5 minutes making lame jokes to hide our awkwardness. They were fantastic. And the big deal is - so I saw what an autologous tissue flap looked and felt like oppose to implant breasts. And she decided not to have nipple reconstruction, only areola tattooed on. So I may decide not to have nipple recon either - Damien said well it's 'the cherry on the top' for plastic surgeons and having pride in their work. Excuse the pun ha, ha. So I do it for me or for him......

I'm about to be called in for my oncology massage.....hmmmmmmm - looking forward to it.