Bloody seroma

It's back! After finally getting to a point of no more draining of the fluid buildup in my donor site, it's bloody back. I don't know why, but it feels like I have a 3rd hip attached to me. Kind of uncomfortable but not painful.

Wearing sports compression shorts, like bike shorts to keep it all together.

I'm not sure how I'll go traveling - I guess it will just have to wait until we get back if it fills up over there.

Heading off to the plastic surgeon tomorrow during work to drain it again. :(

Home from hospital

I'm feeling like the world has lifted from my shoulders.



Home from day surgery - a cystoscopy to investigate a urinary problem which we linked with the blood in catheter at last surgery. I've had 2 and a half weeks of mental aerobics with what might be the cause and after visiting an oncology urologist "just wanted to rule 'you know what' out.

But apart from some evidence from trauma (surgery catheter) my doc said all is normal!!!! With a smiley face drawn next to my Polaroids. Yippee I even have some Polaroids of my healthy bladder - what we do with them I'm not sure? It's not something you could stick on the fridge "hey look everyone - so proud", "I just wanted you to get to know me better - from the inside out!" I guess now with the days of selfies - "here is my bladder selfie!!!" I bet you don't have one of those. At least I didn't Facebook it...some might.

Anyway, now we can continue with confidence when booking our holiday to the U.S. I kept self talking to myself to try and stay positive that it is nothing, but those doubtful thoughts would creep in sometimes if I wasn't careful.

Of course it is difficult not to think the worst after everything. Googling my cystitis symptoms comes up with some scary stuff, especially after breast cancer. Sooo now still wondering what it is? Probably all to do with that Zoladex injection for sure. We are just not friends that drug and I. But at least the hives seem to have settled down. Andres handed me a drumstick ice cream at swimming the other day filled with peanuts. I thought now is as good a time as any - I had my antihistamine in my bag. It was only itchy fingers and swollen lips but I didn't use the antihistamine like last time. So perhaps the drug is slowly dissipating out of my body so my histamine levels aren't on alert so much. Well that's my theory based on a few things that I read.

When I arrived bright and early this morning, the dreaded feeling of my last surgery came flooding back to me. Wondering what I was going to look like when I woke up and what were they going to find with the pathology result. My double file was sitting on my bed - gosh it was as thick as 2 family photo albums. That's a first, they must have went digging for some dirt on me and came up with this folder with 3 Caesarean sections. My new surgery file from March was just as thick. It was killing me sitting in front of me and not being able to read it. I wonder what the comments might be - 'difficult patient', 'hypochondriac', "she asked for a room with a view - we aren't the bloody Hilton lady", "too many visitors - sounds like a party in there without the Greek dancing".

I only say that because of what I write in my own clients' comments at work - I even have less than complimentary tags for some dodgy leads who are mostly competitors faking interest to get a log in trial to our system. In some ways it's like a sport for me, investigating and flushing them out of the genuine leads I get. I should have been a cop - uncovering B.S.

So while I am home relaxing after my 'little sleep' this morning, I may as well finish booking and researching our trip with more vigour. Happy Tuesday everyone, there's a 12 year old party to organize :)

Here we go.....

Tamoxifen - an estrogen hormone blocker!



Designed to stop any recurrence of cancer in my body as my cancer was estrogen fed. I have been staring at this bottle for a few weeks wondering what side effects it's going to bring me. Hmmmm...tomorrow is as good as any day I guess.

School holidays have been a time of juggling work and the kids and their social events. It has been pretty quiet due to our planning for the U.S.

We took in a movie, Finding Dora and a morning at Latitude trampolining and wall climbing. The weather in Melbourne has been awful so mostly indoor activities.

My baby boy turned 12! What a fast 12 years and a reminder of how old I am :( The family came over and indulged him with gifts and singing happy birthday. I made a cake which I got lost in doing on the day. Cutting it fine I know. He wants some mates together in the next couple of weeks so will sort that out soon.

But everyday is a blessing and even while today was hurricane winds there was a blue sky and sunshine for me to enjoy some mindfulness. Sometimes john and I talk about winning the lotto to buy ourselves a beloved Victorian/Federation home in the Eastern suburbs of Melbourne, but we don't have a spare 5 or 6 million that they are now being sold for. But it is a good opportunity to ground ourselves and remind ourselves that we got better than the Lotto, we found this shitty disease EARLY!!!

To the Happiest place on earth

Its done!!!! - we leave sunny Melbourne at 9am on Monday 5th September 2016 and leave all of our trouble behind.

Im finally going to get myself some Mickey Mouse ears or a Minnie Mouse stuffed toy that I was so envious that my friend Nicki Pearson had and I was always in awe.

60 something sleeps to go. :)

More crazy itchy fun

There we were enjoying a lovely dinner with some girlfriends, eating from several small plates, a nice glass of bubbly and some wine.

The night was great fun and we had some giggles over some crazy sweet/sour dessert which stopped conversation dead in its tracks, not to mention the cat-bum looks on our faces. I joked that they have hidden cameras and are all out the back wetting themselves with laughter watching their guests eat this complimentary after dinner treats!

Anyway as we are walking to the car I begin scratching and itching all over! Here we go again. This time it was all over my legs, arms and stomach. I came up in hives and couldn't stop scratching. Luckily I had some antihistamine in the car from my last episode and took one without water in desperation.

It eventually stopped itching but the hives stayed with me for the night but were all gone by morning. Definitely no more Zolidex for me!! I have a suspicion it has raised my immune system to the point of a new sensitivity. It could be peanuts, but I have to test it.....with my antihistamine safely nearby. Oh what fun....maybe on a weekend when I have nothing better to do.

I went and saw an oncology gynocologist. She was lovely and what a difference talking with someone who knows her stuff. She said she could say 99% that she would not need to operate abdominally and that it would be keyhole surgery with a 1% chance it could change at the last minute. She also told me the side effects of ovary removal and their important function as we age. She has recommended that I go for menopause counselling before making a decision at the menopause clinic at the royal women's. She also told me to go on my holiday and don't make a decision until after that. To take the tamoxifen for 6 months and then decide. She asked why they were pushing the aromatas inhibitor. She was very reassuring, warm and supportive. Overall a good experience. You wouldn't want to be a prude in her office though. She has very large pictures of the female anatomy all over her office. Sometimes I just didn't know where to look :/

My motivational wall.

finally finished coloring one surgery with just outline of the remaining surgery to go. Each coloured represents a part of my 'journey' (we hate that word).

15th June - super kids

Sitting next to my baby boy listening to his soft snores makes me feel like the luckiest mum in the world. Being able to be here next to him and breathe in his baby smell and his warmth is one of the best things about being a Mum. I know he's not a baby but he is our 'baby' of the family.





The last post I put on Facebook I got some comments about needing a superwoman cloak, but I think that my three kids deserve little superhero kid capes for going through what they did to see their mum sick and wonder if I'll get through when we couldn't make them any promises. They toughed it out as did John, my family and friends. I know many were being brave for me.

So what's been happening! I took myself off to my gyno - he was finding it difficult to understand why I needed to take my ovaries out. I tried to explain it all to him. Anyway he's worried it's an unnecessary operation, but oncology want my body to stop producing estrogen. Anyway what I thought might be day surgery, and key hole surgery and at worst an overnight stay and a few days off work - he warns me that it may not be that simple! After 3 c-sections and an abdominal repair he doesn't know until he gets in there whether he'll have clear access to them. It could be abdominal surgery with up to 6 weeks off work. Damn - is nothing simple or straightforward?

Some good news is my seroma may be gone. No fluid to drain for the first time in 11 weeks!!! I high fived my plastic surgeon. He's such a glory dog. My physio taped up the seroma area trying to encourage the fluid to drain to major lymph nodes, my ps saw it and suggested that she was trying to take the credit for the fluid draining. The main thing is that it has resolved for now anyway. 1 appointment off my list each week.

So now I'm booked in to see an oncology gyno who can perhaps advise me a little better, no more Zoladex implants for me since the allergic reaction, so might delay surgery and use the lesser hormone blocker, tamoxifen for 6 months then get ovaries out in the new year and have the aromatase inhibitor then. We'll see. I have an appointment to see oncology tomorrow, not sure how happy they'll be with my news about Zoladex.

Oncology appt at St Vincents

16th June

Today I saw the oncologist at St Vincents Cancer Centre.

I told her about my zoladex experience and that I didn't want to take it anymore. She said that the side effect was unusual (of course).... And asked if I had reacted to anything else....the only thing that was different in my life was that bloody injection 24 hours before! They take a lot of convincing oncologists.

So then we got down and dirty. I finally asked why the urgency, why do I need to take this super drug and consequently have non-functioning ovaries? What is it about me that we are trying to make me post menopause for this drug in particular? I get that they are finding better results and they only have enough data for post menopausal treatment to compare it, but what in particular about me that they are doing this for?

She told me that my full pathological response is uncommon. Especially with the type of cancer I had and with it gone so far as the lymph nodes. My cancer was considered high risk with the largest tumours being almost 2 mm. Okay - now that's what I meant. She said that they could only expect a good prognosis based on my result - As in no recurrence. (Oncologist won't declare cancer free just because they've removed it all until 5 years post). It now puts me on a completely different level of risk to my initial diagnosis however, where I was stage 3 cancer she is happy to say that I am now stage 0.

Having this all summarized for me made me very happy, scared, happy, relieved - i wanted to hug someone. I knew I had the full pathological response but what did that mean to them? My classification and my treatment and follow up plan?

So I'm off to see an oncology gyno next week for a second opinion on access to my ovaries and I have in my hand a script for Tamoxifen, daily dosage for the next 5 years at least, it's the lesser hormone drug. The oncologist confirmed that in my case, because of the good result - the differences in the drugs may not matter to me as much as it would have with a worst result.

So depending on what the oncology gyno says, I'll work out a plan. But I'm 80% sure I'll use this one for 6 months, check the side effects then decide on ovary removal in the new year after my other surgery.

The oncologist did try and talk me out of prophylactic mastectomy all the same......Friday 14th October 2016 - it's all set.