Life has been 'normal'

19 August 2016

I haven't had much to write about this cancer journey lately - how refreshing is that!!

I saw my oncologist yesterday. We discussed my reaction to zoladex and the hives 24 hours later and possibly linked to peanuts. Yep and the reaction from her was predictable 'I've never heard of that before'.....as usual. The worst part of that statement is that you feel like a freak! Or they think you are making it up and it's not true! She suggested I see an oncology gyno to sort out the menopause rubbish. So I've booked in the week we get back from the U.S.

My physio is still a regular appointment but at least fortnightly instead of weekly. I seem to bring a new shoulder/arm problem to her each time resulting in new exercises added to my routine. She gave me my lovely arm sleeve and hand sleeve for the flights. I also have to be careful with scrapes or sores on that arm so have been monitoring it regularly for cuts etc. I'm even supposed to not let the manicurist cut my finger nail cuticles in case it causes lymphedema. I just have to tell Andres to stop pumping my arm whenever he comes in for a cuddle. :)

The sweetness of our once cancelled holiday excitement is starting to kick in. I have started getting clothes out and suitcases. All of our last minute planning will happen over the next few weeks.

More surgery

It's been a busy couple of weeks, with travel plans, big changes at work, an emotional roller coaster and medical appointments. 1 minute I'm terrified it's gone to my bladder, the next I'm relieved and think I can live normally again without fear, then the menopause symptoms come and differentiating them from normal side effects - aaarrrggh. At least my GP is my 1 constant, but sometimes you feel like you have too many specialists all with disparate interests - like you aren't a whole but broken into different parts. There are some attempts to bring it all together - perhaps the Olivia Newton John cancer centre achieves it best, but I only had radiotherapy there. Maybe it would be different if I had all my treatment there.

If my plastic surgeon had his way, I would now be recovering from surgery with a drain or two hanging out of my hip. After visiting my plastic surgeon, he took one look at my seroma and suggested we start again with it. It seems to be beyond the extracting of fluid so he wants to go back in there, excise the scar which has hardened, clean it all out and put a drain back in there. Overnight surgery and a few weeks recovery. But we have now 5 weeks until we take off for Las Vegas and given that we had to keep draining the seroma every week up until 4 weeks ago, I'm not willing to take the risk.

My GP agrees with me - better the devil that you knoW she said. So I'll be packing my seroma with me to the USA, hoping it doesn't get infected and I don't need a visit to a doctor over there with no travel insurance for my pre-existing conditions of breast cancer. I have since been to a Boob Club meeting, a group of young women recovering from breast cancer. Not to be confused with book club, which alternates every other week of the month. Kids get confused about where I am going but have a giggle when it's boob club time. Anyway they gave me some insurance companies that do insure for breast cancer. I can just imagine the cost but may be worth doing.

As close as our trip away is coming, so is my surgery for the other side in October. My plastic surgeon is also talking about nipple reconstruction - I'm not sure I want another surgery, but given that I'll probably need one with this seroma now, maybe I'll consider it. I'm excited to even myself out - I'm a whole cup size different at least but at the same time sad to lose any feeling there and the loss of the mammaries (memories) of feeding my babies - you got to laugh.

On the upside, when I showed my plastic surgeon the seroma he asked to see his handiwork, the reconstructed breast, cos it always makes him happy! Ha, ha. It was an opportunity for me to ask him about the grainy/lumpy feeling in it anyway. He says it will soften and that it is as a result of the radiation. he did say that there is no corrections to do on it which is not common (I think he is just trying to make me feel better). But he was setting my expectation that he may not be able to replicate it. I still don't have normal movement of my shoulder yet and still have the lovely cord pulling tight under there and it feels like I have a handbag under my arm and it's all baggy. But still seeing a physio and a clinical Pilates instructor to help with that.

I've been playing around with 3d nipple tattoos - temporary ones, like the kids temporary tattoos. I have been hiding them - can you imagine if they get hold of them - they'd have them on their forehead or somewhere totally inappropriate.... Trying to work out if I'll be happy with just a picture of one. It's pretty realistic - I think I could live with it.

In the meantime, I've been cleared of bladder conditions so it comes down to dealing with the menopause symptoms. Whenever I heard women talking about side effects of menopause, I probably wasn't very sympathetic wondering why some hot flushes would be a problem. But that is only one side effect. The stopping of estrogen impacts your whole body, your skin and your womanly parts where even going to the toilet can be painful - who knew? And why wasn't I told by the oncologists? It becomes a whole lifestyle impact - but I'm alive right! I need to do a perspective check regularly. While I am taking an estrogen blocker for 10 years to stop the estrogen eating sucker, I've been given estrogen cream, which is topical to help with the side effects!!!! Apparently it's such a small amount that it won't continue to feed it, but enough to elevate the symptoms??? I am wary so using it sparingly.

33 days to go - yay..

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).