dishmoptop

The circus they call ‘home’

Here I am mostly intact. We have moved in with Sophie and Jarrod in Glen Waverley and our dogs only fight every 3.5 seconds now so things are improving. It’s like a circus here but we don’t have to buy tickets so that makes it kind of cool.

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We have successfully settled our sold house and our purchased house at Safety Beach is ready to be demolished. We are hoping to have a little holiday in it before that happens but that depends…

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I hesitate to tell you what’s going on medically because I don’t want my breast cancer followers to lose hope for breast reconstruction. However, here is the long and short of it…

diep flap

New flat belly complete with belly button repositioning. Sutures keep going around the corner!

Here I am with a stomach wound which looks like someone took to my waist with a can opener, various scars from the tape (everywhere), bruising from various injections and lines, a right breast which has had a reduction and looking pretty fine, a left breast which is ‘mostly’ fine BUT part of the DIEP flap reconstruction has lost circulation and ‘died’. So I have a black hole the size of two 50c pieces on the inner part of my left ‘breast’. It is a big bad angry looking mamma. No photos provided. I don’t want to scare you.

10155433_10153574376714506_2489141779332434782_nOh… not to mention a 7cm scar on my arm from the incidental melanoma. 

What now? They decided that this section of the flap is definitely ‘dead’ on Monday so I need to go back into surgery to have ‘something’ done about it. The melanoma also needs to have more taken from it so they will do both at once. The surgeon will decide when and what tomorrow morning (Wednesday 23rd March 2016).

I’m off all pain killers now so I should be heading onward and upward… if only I didn’t have to go back in and get it done again. I appreciate  your prayers and concerns. Soon this will be over and we can just stop and watch the dog circus while sipping camomile tea and wondering where on Earth all those things we packed into storage for 12 months are. My car will be released from it’s holding bay where The MOTH put it so I can’t drive. Meanie. 

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Good thanks!

10347187_10152183012219506_1541027296625629266_nWhen people ask me how I am I say ‘good thanks’. That’s the standard Aussie response but what I mean by ‘good’ is… ‘all things considered… I’m good’. If I wasn’t on chemo and was asked the same question maybe I’d say ‘not so good’. I don’t usually launch into details because there are people around me suffering far more from various illnesses. Besides, I am feeling good emotionally and that’s a significant thing. In 2 months time I change chemo drugs to ‘AC’ and this could reduce my blood count dramatically. I will have 12 weeks of it, so I’m preparing my body to be fit and healthy by eating right and exercising regularly! At present, my blood count is still normal and the tumour has shrunk to the size and width of a long grain of rice so thank God for that!

Here is my pity party list for those who want to know what ‘good’ means…

  • I can’t sleep due to insomnia and night sweats which are every 30 minutes. This is due to ‘THE PAUSE’ not the chemo, now that I’m off HRT. 3 months ago I slept like a log. Here I am now, writing this blog post at 4am. Boo!

 

  • My brain is really struggling with ‘chemo fog’ as well as ‘THE PAUSE’ causing brain malfunction. It exhausts me to make every day decisions. Cooking tea is a major drain on the grey matter. I’m so glad I’ve made my life uncomplicated! Being self employed means no sick leave and my job requires lots of brain power because eLearning projects have strict deadlines and can be very complex. The threat of litigation looms over my head if projects are not completed to an agreed standard. So work is out of the question. Boo!

 

  • My sinuses are picking up allergies and causing problems due to the thinning of the skin (everywhere) and the hairless nostrils. Bleeding and congestion issues have been mostly resolved by putting vitamin E inside the nostrils each night. I know that’s TMI but some of my readers have cancer and details can be helpful!

 

  • Although I have no nausea, my food tastes weird. I have to ask people if my cooking is funky because it sure tastes that way.

So overall, that’s not too bad is it? As I say… I’m good!

 Balancing acts

10377159_789271297763330_542149322412441886_nLife is fairly self indulgent right now. I have ‘rest time’ blocked in most days so that I don’t over do it. I am not putting my hand up for things which I know will create stress. What? Not doing 1000 things at once? No study, art, work and play? Usually that’s what I thrive on. SometimesI feel listless without the challenge factor, but mostly I’m happy in my little foggy world. I’m so glad I have my art and it’s been selling quite well so that helps pay for materials. My social calendar keeps me pretty busy and I don’t have to use my brain too much for that:)

I’m managing to keep myself healthy and to maintain my fitness level. On Sunday I’m off to run the MS 5k fun run with my dear friend who has had MS for 21 years.

I’m not being a hero, I am a fighter by nature. I am also contrary, independent and stubborn, which is the flip side of being a fighter. The MOTH will verify this without thinking about it for more than 3.5 seconds.  I know that all cancer patients deal with their illness differently, there are 100s of different chemotherapy drugs which have various side effects and also different types of cancer and different types of breast cancer as well. I would hate to think people felt inadequate or compared themselves to my story. My story is my own and I recognize that we all tick differently and our bodys respond differently. My first response to anything is to fight. Not necessarily the right response!

To begin with, I was already physically fit (for a 53yo female) and ate a healthy diet. I don’t drink alcohol very often and I don’t smoke. I also boosted myself up with supplements prior to beginning chemo. So my starting point was high therefore I’ve managed to maintain good health up to now. If my starting point was low, no doubt I would be struggling a bit more than I am. I’ve found it important to know my limits and listen to my body!

Loving my 3 sisters

The sisters

Last weekend I escaped to Sorrento with my 3 sisters for our first time away together ever. It was an amazing weekend and I loved having time to just chat, laugh, soak in the hot springs, eat and shop with them.   Getting there was a challenge. Firstly one sister had an abscess which resulted in surgery to have a molar removed the day before we went away. With a mouth full of stitches and in pain, she soldiered on!  One of my other sisters had a chest cold but wasn’t infectious. As well as that, I broke a molar off on the Wednesday and had it filled the day after, which is a bit of a big deal when you’re on chemo. Hooray for them and the tough genes! It was a miracle we made it but it was definitely worth it.

Embracing the bald

Day 1 of my bald badness

Day 1 of my bald badness

I’m taking a photo a day of  my lovely bald head in different hats, wigs and so forth, of which I seem to have in abundance. Many of them are costumes I’ve scavenged from around the house. I might make a fast paced movie at some stage. Why? Because I want people to know that losing your ‘vices’ isn’t so bad. Hair loss is a fear a lot of women have and I was not looking forward it at all but it can be quite liberating or even amusing. Sometimes it can be just plain weird.

Day 2 embracing the bald

Breast cancer post #4

Woo hoo I’ve finally found some information on the clinical trial I’ll be taking part in that isn’t written in gobbleldy gook!

If you’re interested, have a read. It’s actually quite ground breaking treatment for a type of cancer which previously had little hope. The article is referring to the ‘guinea pig’ phase, which is different to what I am doing as I am on a trial phase. The trial phase is the last step before they implement this strategy as a standard treatment for people with Triple Negative Breast Cancer (TNBC). http://www.breastcancer.org/research-news/20101005-3

This article on Triple Negative breast cancer is also informative but written in plain speak: http://www.breastcancer.org/symptoms/diagnosis/trip_neg/behavior

I begin treatment on Tuesday the April 1st (April Fools day), providing all the tests are done and the paperwork sorted in Italy (!) by then. In the meantime I’ll be doing more tests. Yay! Not. So I will be put into a randomized group and get one of two Nab-paclitaxel type drugs. So group A uses one Nab-paclitaxel drug and group B uses the other. I will know which group I’m in but I can’t choose. Then after that treatment I will begin standard chemo treatment and then surgery and radio therapy.

Sounds like a plan?

Keeping positive

People keep telling me to keep positive but how am I supposed to do that when I have Triple Negative breast cancer? That means I need to be triple positive just to be neutral so that’s a lot to ask LOL.

Actually… I am feeling ridiculously positive. Not that I’m in denial, it’s just that I have absolutely no doubt I’m going to kick it. That could be the power of prayer and being surrounded by such amazing friends and family and whatever other reasons we can come up with but it just isn’t in my radar not to kick it.

My Mum was my age when she got cancer (53) and died at 54 a few months later, so that’s a bit scary but I will not let that take over me.

It might be called Triple Negative but I’m feeling triple positive.

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I finished this artwork yesterday. It was started in the middle of the night about 5 days ago and reflected how I felt at the time. The dead of night does that to you. Although it isn’t a reflection of where I’m at right now, it does highlight that first couple of days where I wanted to curl up in a ball. When I look at it now I remember the feeling but it isn’t something I can identify with (today).

I’m sure that as I go along I’ll meet an array of different feelings. Maybe my positive hype will wane a little when I’m in the middle of Winter (urgh), chemo and the long haul is still ahead.

My brain is already in a kind of fog. It feels like the world is rushing by me and I’m here in my foggy place. To top it off I have to come off HRT which is a bit nasty and bound to make the fog worse. Has anyone got an anti fog machine?

Todays funny MOTH story

Sorry MOTH… but you do keep me (and everyone) entertained. As a typical MFB firefighter, he is used to getting a ribbing. It’s all part of the culture. So I’m sure he can take it and he knows I love him dearly. Now on with the story…

You know he doesn’t like sitting still right? Well hospital appointments are our new worst nightmare. I’m about to make him an activity pack for our waiting times. Colouring books, pencils, snacks and Valium. Oops… sorry I didn’t mean Valium that just slipped in there.

This week, he was sitting on a bench seat in the radiology waiting room and a woman came up to him and said ‘could you please sit still as your jiggling is making it hard for me to send a text message’. 

Some people just need a perfect world LOL.