Remembering our trip

Gosh, it seems so long ago we were in the US. While I was in hospital I used the memories of our trip to keep me going. Thinking happy thoughts.

Anyway, Ive got some of my favourite photos to reflect on, John took 4000 of them. I'm sure there's a lot more, but here is a small collection.

Putting myself back together

I expected this to all be finished by now :( It's so frustrating and slow this recovery. I'm concentrating on putting myself back together again, I know I will never be the same again both physically and mentally. Still living with the fear and sad when realising I'll never have my body back the way it was, not that it was any "elle Macpherson" body but still it was mine, all the flabby bits and all. I feel a little Frankenstein-ish when see myself in the mirror with slashes like I'm the main actor in some kind of gory horror movie. The weird shapes are hard to get used to also. But I need to be patient to get it back together.

So the body, the mind, my hair and my toenails are all on the mend. And then there's Tamoxifen. Just when I got used to the stuff, I've got the lovely bone pain (which makes you fear the worst), hot flushes and tiredness - all that I had got over when taking it before. (I had to stop it before surgery and have only just started taking it again).

I will never feel under my arms again, making it dangerous to shave under there. Its interesting when you spray your deodarant in the morning, the door behind me must be covered in deodarant - I can never find my armpit. I'll have to revert to roll on - less mess.

Decided go bra shopping as well, well not a bra but something that could hold my bandages in. One benefit, I dont really need to wear one of those anymore if I dont want to, but with the natural tissue they can still sag. But 1 is a B cup and the other is a large C or a D - my clothes hang in a very interesting way.

I saw the big moon the other night - I feel like I have to part of anything that's happening and make the effort rather than miss out and fully participate in life's these days.

I have also started a journal with all the things I'm grateful of each day - hmmmm...turns out I have a lot more than I thought I did.

I'm grateful for the beautiful flowers and chocolates I received from Leanne, book club and work. Also, Susie brought around her most excellent meatballs - yum. The girls, Carolyn Jill brought me magazines and chocolate for while in hospital and coffee and muffins when back at home, yummy Haigh chocolates from work (I managed to eat them all myself, but had to hide them to do so).

Then of course the gift of my Mum, thanks Dad for lending her to us. The cooking and washing were taken care of while I recovered. Mum and I had a lobster for lunch on Oak's day. So with drain in hand, I decorated the table, the weather was beautiful. It was fun in our own kind of way.

Thanks for all of your support of me, I am very lucky.

Anniversaries to forget

Today was my anniversary of my last chemotherapy 1 year ago. I so looked forward to the 20 November 2015 like no other date in my wee life. As I fight to keep the fear buried within, I hope I never have to go through that shitty experience again, or for anyone else for that matter. I know some people fly through it with hardly any symptoms but I don't know how or why? Probably different chemo drugs I guess.

This week I was asked to go to the a Think Pink Living Centre to support them for a media release. I couldn't not go after all the free services I have taken advantage of. Except when I got there they asked me to speak to the media. Luckily I had written a blurb for their media release but I wasn't expecting to read it. Anyway, with knees knocking and a good deal of reading from my tiny iPhone screen, I delivered my story. So tonight I saw myself on channel 9 - aagghh. It's difficult to see yourself on TV that's for sure! Anyway I do hope they have more clients utilize their services and they continue to get funding into the future. With charities it's all about how well they are known like the mnd foundation ice bucket challenge.

My beautiful friend, Cora's anniversary of her passing came and went. We were in the middle of San Francisco climbing one of those crazy hills or the Coit Tower steps, not only did I realize just how unfit I was, but thinking about the struggle, she popped into my head. I checked the date and it was her anniversary. Vale Cora.

Another milestone - I had my first haircut - Woohoo!!! So excited to need a haircut. Thankfully he did not take too much off my hair, but mainly shaped it which is exactly what I needed him to do so I could grow it. No more koala bear ears sticking out the side of my head and he cut off the tiny curls. It reminds me of the old perm days in the 40's and 50's where women would perm their hair as tight as they could possibly do it and then have their hair set to make waves. Yep I even did set my hair in curlers to make this work for me.

We also had Andres' reconciliation at school, I asked the kids what they are grateful for, Andres was glad that I didn't have cancer anymore :)

I finally got my drain out too - I said goodbye to my little friend - good riddance little sucker!!! So it was much longer at 4 weeks out from surgerY before removal. Luckily it happened just before I was due at the media release - ooh that would have been a bit gross. This drain was draining my buttock site, so Fingers crossed I don't get a seroma with this side now.

I saw my GP today and it turns out I have the start of an infection on the latest mastectomy and reconstruction site. So on antibiotics to get that sorted - wouldn't it be terrible after going through all of this with my buttock only for it to fail. Leaving me with a butt that looks like it has been through a hail storm with stones the size of cricket balls. My P.S is on holidays so he couldn't check it out. He didnt seem too worried, but an email at 1am on a Sunday morning with photos of oozing ought to tell him that his patient is freaking out, nope.

I'm back at work, but can't quite deliver on a full work day just yet. Came home today incredibly tired and heavy, tucked up in bed now ready to have the conversation with my body that it's time to sleep!!!! Good night all, sweet dreams.

18 Days Post

Day 18 has come and I'm getting better - but not quick enough for me.

I've got things to do and getting frustrated sitting around all of the time. So I've signed up to do a course, and looking forward to fixing this surgery so I look somewhat normal and driving again.

Today I saw the plastic surgeon, I have been a little down about the result of this surgery. My chest feels like I've got some type of tight bandage wrapped around my chest and it's as hard as a rock. One girl likened it to it feeling like an amputated leg stump sitting on your chest - it truly does feel that weird after the softness of your natural self. Not to mention the lack of symmetry and puckering and that it feels like the tissue is bulging and about to spread into my neck region. Then there's the issue of my back flap. Something I never considered prior to taking the 2 glute flaps for the implant, where the 2 scars cross there is a puffy section that looks and feels weird in my clothes. Anyway hurrah, it's all fixable and he says with very minor surgeries. To quote him '60 seconds to fix the back flap problem'. The question is how many more? The reason I chose this method was to reduce the amount of surgeries in the long term (implants need to be changed every 10-15 years). Anyway, I'll see what he has to say to that question.....

A few days after arriving home, I got the most excellent news from my beautiful breast surgeon that there was no cancer in this mastectomy - yay!!!! That was exciting and expected, so glad it all went to plan.

Mum has been here helping me with the kids, cooking and housework - she is my guardian angel - thanks Mum. John has been ferrying the kids around as well as Heidi backing up with drop offs. It's hard to not do the things I normally do, but doing more as I get my energy back. Grateful for being so supported and loved - thank you :)

Halloween has just been and gone.....I did consider using my drain full of blood as a prop for a costume, very creepy. Since I have to tow it around with me every where I go, it would have been a perfect Dracula prop but it might have scared some kids so I reconsidered. I dressed as Daphne from Scooby Doo and off we went to Heidi's for a creepy dinner and Trick or Treating around their neighbourhood. They have it set up so that you only go to houses with decorations and leave the others alone. At least people can choose to be involved or not. Mind you, I just sat in the house, while the fathers took the kids around the neighbourhood :) The kids had a ball and it was good to have an 'outing' outside of these 4 walls within some other 4 walls.

I must say I'm going a little bit crazy stuck here. At least I have started my Christmas shopping.

Familial Cancer

I received a letter from Peter McCallum Cancer Centre.

My Breast Surgeon had put me forward for testing for the BRCA gene to see if somehow I may have inherited a mutation. If this was the case, then Jana would also be at risk of breast cancer in her future.

It turns out that I am a low risk, so this is just an unfortunate freak of nature. If you are high risk, they do the testing and counselling at no charge (I think), I can ask to still have the test done for about $3,000.

My oncology gyno suggested that there are so many new advancements in development for testing for breast cancer that she suggested that I hold off. By the time it will most matter for Jana, there should be a simple blood or saliva test for it. Wouldn't that be great and such an easier way to be tested.

However, so I possibly don't have the gene mutation, just dumb luck. But for my sister, my mother and my daughter - they now have a moderately high risk because of me....so they need to be tested regularly and for longer than the average Jane. It also mentions considering hormone receptor blocking medication for daughters, which sounds a bit drastic. So hopefully the simple testing comes into play in the next 5 or so years taking the worry away for Jana.

I'm still to consider the hysterectomy or ovary ectomy (forget the name of it)....but I've got to get through this surgery recovery first.

12 days post surgery

Some lovely gifts from my little family that warm my heart.

Well I've survived the first 12 days. I came home with 1 drain left in my hip that I need to attend to every second day. I am a skilled drain changer now. I keep forgetting that I have Dewey attached to my hip as before - especially waking up in the middle of the night needing to go to the toilet only to be yanked back by the stitches where Dewey lies in waiting twisted up under the blankets somewhere.....OUCH!

I also have to inject myself with anti-clotting medicine every morning - the joys of it all. Luckily Mum is much braver than me. I did it once in hospital, but I couldn't bring myself to actually puncture my stomach with the thing - it took forever, but I did manage to do it at least once :( I cant even watch other people doing it to me.

I had my first visit to the plastic surgeon. The nurse just changed my dressings and sent me on my way. The drain is still draining way too much to give it up yet. My plastic surgeon saw me in the reception area and came up and gave me a 'sideways' hug. Asked how I was doing. He was a bit concerned that I had a super high expectation with this other side, as the first one was such a good job first off. I wouldn't know really, it doesn't feel like me, or look like me. And if I was honest and wanted to be a bit picky, it probably doesn't follow the lines of a natural one just yet. He was pleased that I was starting to get picky. At first I just wanted the cancer out, then I just wanted lumps under my clothes but now I have progressed enough mentally, that now I am fussy. Prior to surgery, he had me lying down while he pulled out his tape measure and texta. While he drew all over me, he did it all again - "measure twice, cut once" he murmured to himself. Well that was reassuring, and I think he may have got my butt even. Stay tuned to see if I don't have a permanent one sided wedgy and I'll know for sure - that will be my measure to see how good he was.

So now I have an 'asian bum' as my asian oncology radiologist put it. Only he is allowed to say that.

Otherwise, I'm managing the pain mostly. Sometimes, I do hit a wall if somehow my painkillers don't align and there's too large a gap between them. So last night, I took the evil pill that dopes me out - I got lots of sleep and then some. Today I fell asleep watching TV without even trying. Tonight I might try half a tablet to see if it wears off a bit quicker for me to start my day.

Next milestone is getting the drain out and then I can wear my normal clothes rather than trying to fit th drain in what I can.

Then its confronting the final result and discussing what needs to be done to fix it. My 'new accessory' certainly doesn't look right, I cant feel it anymore which was expected. Then there's the x over cross on my butt which has a puffy pocket below it which needs to be sorted, unless it goes down by itself. So hopefully only 1 more day surgery after that and then I'm done.....here's hoping anyway.

Discharge day is here

Tuesday

So I think I have a day for discharge being this Thursday. Feeling a little nervous about it.

I've been having needles 3 times a day - heparin. It's supposed to stop blood clots. they are painful until - a lovely nurse called Jennifer held my leg and didn't let go straight away. I didn't get the bee sting feeling I usually do with her administering it. No pain at all - it goes to show that it's the level of care from the nurses that makes the difference.

The food isn't great - today at lunch I snuck down to the coffee shop for some sushi rolls. It was a party in my mouth with so much of the food devoid of flavour here.

I have started to think about things again and the reason that I'm here has raised its' ugly head again. It's always lurking in the depths of me somewhere and then different triggers bring it forward again. You also inadvertently hear the sad stories around here and that feeling of terror of learning the diagnosis - it all that comes back to me.

But I have to stay positive and let the body heal, taking each milestone at a time. Look forward to my positive future rather than 'what if' scenarios that may never happen. And trust that I have gone through this to prevent recurrence. I probably need to do more in my life to reduce my recurrence risk as well.

I've finally worked out my painkiller intolerance. Oxytocin via a drip causes nausea and dizziness, voltaren I seem to tolerate, panadol is ok, taigin is okay but causes some drowsiness and constipation, they gave me dexomethosone to sort out my dizziness so that improved. Everyone has sent beautiful wishes on Facebook which make me cry when I read them.

Wednesday
Last night my babies and John came up to visit me. Andrés kept cuddling and kissing me, then started crying when he was leaving. I just wanted to cuddle him and keep him with me :( he was sad that he also forgot a drawing he did for me. John was going to scan it and send it through to me.

This morning, my plastic surgeon came in and gave me great news that the heparin injections 3/per day are stopping, and some not so good news, I'm going to a new one per day except I have to inject it myself once per day for 2 weeks!!!! Be careful what you wish for people!!!! There I was complaining.

He says it might be overkill, but he's being cautious as the vein he is used is much bigger than the other one and he needs the blood to be thin to prevent any problems. I wonder if it's contributing to my light headedness. Possibly going home tomorrow, with 1 drain left to take home. So hopefully the second last drain will come out today with no consequence and all will go to plan tomorrow and I get to sleep in my bed tomorrow night.