Hello old friend

I'm thinking that I may stop writing in here soon.  I'll see how I go.  I didn't want this to be a blog full of woe-is-me bullshit and wanted rather to be encouraging and uplifting.  This last week has been harder though.  I'm finding the constant nagging discomfort and pains are really bringing me down inside.  The last two days the expander on my right side has felt really 'stuck' and I can't seem to shift it.  The pain behind the incision scars has been worse too, quick sharp pains followed by long burning pains.  Pain killers are only touching the surface.  I think I'm so scared of getting addicted to them  or damaging my body that maybe I'm not taking enough of them often enough, I don't know.  I think the fact that I'm so tired at the moment and can't sleep properly, even with restavit, probably isn't helping me much.

I don't want to whinge and whine like a bloody sook but I think I just need to.  I'm scared if I complain to hubby too much he'll start getting closer to women at work who worry more about him than theirselves, so I try not to say too much, and I don't want to make my children scared of finding out if they have the same defect so I don't say too much to them either.  So, dear diary, it is you who have to take the brunt of my self pity moments and put up with my sooking.

I try to see the bright side all the time and remind myself at least I won't get cancer now, but it really doesn't do much for me at the moment when I'm so uncomfortable.

I think I have found a tatoo I really like too, this may be the one, but done with the colours of both Breast and Ovarian Cancer, what do you think?  

THIS PHOTO DOES NOT BELONG TO ME, I FOUND IT ON GOOGLE!!

I've noticed that I seem to 'want' to hear about everybody elses woes at the moment so I can forget about my own.  Hey, each to their own I guess lol, saves drinking or smoking or some other diversion hey.

I'm getting super excited about seeing Spiral Dance live this weekend.  I wish it wasn't fancy dress, but, never mind.

Okay, dear diary, I've had my moment of complaining and self pity, now onwards and upwards again.  Time to go do my hair and put on a face and see that everything is right in my little world.

Sending out the Love and Light to all on this gorgeous winter's day.

It continues

I didn't realise it's been so long since my last post.

I guess I don't write much because it is all pretty much the same day in day out.  I am still quite sore today.  Everything was starting to settle but I went on a holiday down to Wodonga which meant 12 hours in the car each way!  I guess all the driving, changing gears and bouncing around on the road was not a good idea after all because since then I feel like I am back at square one.  The pain and constant aches are driving me nuts.

Here are some photographs from our trip over to Wodonga.

Sunrise just outside of Blanchtown

Houseboats at Dawn

The Border between South Australia and Victoria.

Our gorgeous Wedge Tail Eagle.  We saw dozens on the trip but never had the camera ready! Murphy's law...lol... Thankfully my camera has a decent zoom on it so we could at least catch one!  For such a large bird they really are quite timid and bloody fast to get away.

Sunset as we were approaching Finley, I think.  This was behind us........

.........this is to our left......

....and this is what we were driving into.  I wish the colours were captured more clearly.  I took dozens of photographs but none of them really did justice to the amazing pastel colours that were hanging in the sky.  Absolutely breathtaking.

I have been for my final check up with the breast surgeon that took my breast tissue and he explained to me why I am so sore.  Because my breast were so wide the tissue actually expands under the skin back to under my armpits, towards my back, and so when they take your tissue, to be safe, they cut way past the actual breast tissue.  This means that the muscles near my shoulder blades as well as my sides and chest were also cut and that is why it has been so sore.  He was suprised when I told him I had expanders in, I think he thought they would put the implants in straight away.  But, all in all, he was very happy with the way everything had gone and with the way everything is healing. 

Since the trip my chest feels so much tighter, like I have something squeezing me all the time. My right side is especially sore, but I get stabbing pains throughout the actual cutting scar and in the 'cleavage' where it's stitched to my sturnum, it feels like it tears every now and then.  I know it's not, but that is how it feels.  The most horrible feeling though is the feeling of the 'clicking' of the expander bags on my ribs.  Even breathing is painful at times because of the bags getting caught on the ribcage, well that's how it feels.  And when I walk and breath I can consciously feel them clicking as if they are creased on the bottom and they expand and flick the seam straight when I breathe in and then crease again when I breathe out.

I wish I could be so happy.  I do keep a happy face on though.  No point in bringing people down all the time, it would only make me feel worse.  Plus, I don't want my girls scared to have the operation if they need to. 

I just want to get back to normal.  I want to get a job and start earning money.  But every time I think about it a small voice inside my head says, "what's the point"  because I still have another stupid operation to go yet and then time to get over that one.  Thankfully it is a much smaller operation though and should only lay me up for a short period of time, so that is something to look forward to :)

On an up note, I am attending a weekend training course for Hypnotherapy.  I'm sure it will be very basic but I'm hoping it will stir the fire in me and help get me going again.  It's my dream to have a little office somewhere and help people with this amazing skill.  I know I will be great at it and I know hypnosis can help in so many ways so I just need that break to get me going.

Well that's chewed the fat and I don't think there is anything else to say for now because nothing else has been happening.  I still can't stretch my arms to full length and I keep overdoing it and getting the strangest stomach churning pulling feeling on the muscles hehe, that's a real wierd one, but they will get there with use (and the help of flexall I hope ) . 

Ouchy

Well, I've started trying to get back to as normal as possible but it would appear things aren't going to be that easy!  Of course,  why would they!

I started trying to do a bit of gardening yesterday.  The weeds are starting to take over where I want to grow vegies.  So, out I go, wellies on :) and hoe in hand.  First slice into the grosse, sticky, red clay soil and it was like somebody hit my right 'breast' with a hot knife!  It was a wierd feeling, it hurt but it was really strange at the same time.  It wasn't a sharp pain, but boy it hurt.   It only lasted about 10 seconds so I figured that would be it....hahaha.... yeah right.  I tried to keep going but it hurt too much so I had to try to think of another way to do it.

I got out the little hand fork and spade thinking I could just squat or kneel down and do it........nope!..... The stupid pain kept hitting me, first one side then the other and it was really yukky, I guess because it's not a pain I'm used to, so it made me feel a bit queasy as well as worried I was doing something wrong.

After a while I finally gave in and came to the conclusion it's still a bit early for digging in the garden SO.....I can't dig the bastards out, I'll poison them instead!  Off I went for a bottle of roundup and started spraying all the weeds I could find, hoping at the same time not to get any overspray onto our lovely roses or bulbs haha

So, today I'm really sore now across the tops of both 'breasts' and it feels like it's burning, so this is probably the healing on the scar tissue, but I do wish the pains would stop, they're not very nice and just make me grumpy and sulky because I can't do anything and I'm totally through with sitting on my backside everyday!  It's a wonder it fits in the chairs any more!

Oh well, back to knitting again until it settles back down.  Going on past weeks it should be feeling much better by Wednesday (two more days) but this week I don't have to go in on Thursday for another pump up to disturb it all again!  Got to be happy with that :)

On the up side I'm finally getting some shape :)

8 weeks Post Op

It really doesn't look very nice, but, hell, this is more for my own memories anyway haha.

The scars are so fine!  I'm very lopsided at the moment because they needed to keep extra skin for the reconstruction process, but once everything is done they will have a normal shape to them :)   I hope....lol

Last Pump

Today was my final expansion, just over 700cc in total now inside the pockets, aparently this is the largest volume possible lol

I tried to vacuum today!  Not a good idea!  Not on carpet anyway.  I have been able to use the little stick vacuum on the parcquetry flooring, but today I tried carpet with my Dyson,  it's a strange thing to feel things moving around beneath your skin, I will say that.

I am uncomfortable tonight and have been most of the night so I'm looking forward to taking some pain killers and just going to sleep.

It's getting quite cool at night now so I just had a lovely hot shower and did my exercises and I can almost get my arms right up now.  The muscles under my arms, that go down through my armpits, are still pulling quite a lot so it still feels really strange and difficult, but it's much more than when we first started on this journey.

I still have my moments of doubts about how I look, as any woman would, but my dear husband always reassures me and tells me I am perfect to him, he's so good to me.  He has done everything he can do to make life easy for me and takes all the time he can off work to help around the house with the kids and taking me back and forth for all the medical visits, I'd be so lost without him.  The novelty has certainly worn off for the kids haha but I think that's to be expected at their ages.   They have been wonderful though and have made me so proud in the ways they have found to help out.

In this last week we have celebrated our beautiful boy turning 13!,

Mothers' Day and the 18th Anniversary of our marriage.  These are all things we take for granted until we are forced to face our own mortality.  I know I didn't have cancer this time, but to be threatened with the certainty of it really makes you think about how you want to spend your life.

All the tape residue has pretty much come off now and I can now see the lovely thin pinky/red scar line, it really is so thin that I'm hoping with proper care and lots of vitamin E cream it will fade really well over time.  I will upload another photo when I get a chance.  I still have a lot of trimming and shaping to have done in the final operation.

I now have to go and see my original breast specialist for a follow up review, hoping to do that next week, and in July I go in for my review with the plastic surgeon and we start to discuss the final operation and replacement of the expanders with proper breast implants :)

For now though, it's just a matter of letting the expanders sit and rest and allow the scar tissue to heal more before we can do anything else.

So, now I just wait and get stronger and happier.  John bought a wonderful electric walker so I think I may even have to start getting onto that and start burning some of this excess weight off so that after my final operation it will be like an entirely new me :)

They say, a change is a good as a holiday :)

6 Weeks Post Op

WOW  I have neglected my Blog :(

So, it's now 6 weeks since the big 'M' and I've been through some truly up and down days.
I know when all this is finished and I am completely healed I will think it has all been worth it, but presently I still have more days where I wish I hadn't done it, than had.

The really strong pain finished within probably the first month, and it has been more like really annoying discomfort 90% of the time.  Sleeping is still only with the aide of sleeping tablets, it's just almost impossible to get comfortable.  I have been a side sleeper since having children and now I have to sleep on my back in a reclined position because it is just too uncomfortable to sleep flat on my back.  As it is, I still wake up feeling like an elephant is sitting on my chest.

Aparently I am one of these people whose body likes to create adhesions when it gets cut.  I have them from the hysterectomy and I have them now.  So when I sit for a while, or lay, everything sticks to the muscle expanders and then has to let go again when I move.  So I often feel like little teeth are grabbing onto my ribs, like hooks, and I try to unhook them lol  Strange, but just the way they go. 

But, here we are at 6 weeks and everything is going beautifully according to the plastic surgeon, and he's the one that knows so I'm putting my trust in him.  The tape came off today, on the cuts, and the scars are so thin!!  Now that I am very happy with  :)  Although they are very long cuts they will fade with time

the bags of fatty skin to the sides will all be cut away with the final operation.  Some will be used to create nipples and the rest will just go.

This picture is after my third expansion.  It's not a very good angle, from the top they look much better lol but at least there is a little bit of cleavage happening now.

So, in a nutshell, it's been a hell of an emotional trip thus far but all is healing as it is supposed to be and I now have the same risk of breast cancer as a normal person with normal genes :)  something like less than 4%............gotta be happy with that :)

Tis the night before.........

Well, working with plaster bandage is different that's for sure.  We did a cast and I had no idea just how little room there was between my bust and my waist these days!  I wanted to bend in half so that everything was more.......umm.......rounded I guess you could say ;)  I told the family I could make new nut bowls that way :)  rather than serving platters......hmmm.... oh well, it will be interesting to do another casting in 12 months just to see how much I have changed.

It's less than 12 hours now until I go into hospital.  I'm hoping I get taken in really early and don't have to just sit there for hours on end like my sister did.  I can't stand not being able to have a cup of tea in the morning so I just know I'm going to be grumpy.

I'm just not looking forward to the bloody drips, I hate them! 

I have some nice new pj's and fluffy slippers, and a dressing gown that I've embroidered the back of with "Cancer can Kiss my Arse" hehe  and a fist holding a ribbon.

I've also cut out a poncho type shape in some warm fleece just to keep things covered but easy to get to.

I'll be taking all the essentials as well, computer, phone, ipad, knitting.......lol....  couldn't go without all the electronics and craft!!!  crikey, that'd be like living without light I think...haha

Well, I'm off now and hopefully my next blog will be that all is done and I'm right as the milk  :)

Till then.....toodles

Not Now!

I can't believe it! less than four days until my op and I have managed to catch a cold! So pissed off.

On the up, the house is looking lovely and clean and I've been able to start working on our vegy patch thanks to my wonderful hubby getting a guy in with a huge digging machine.  I have lots of yummy seeds germinating now, peas, cauliflower, broccoli, leek and spring onion.  And I have some purple carrot and purple okra seeds on their way to me now.  I've also started creating little patches in the garden I'm calling my Angel gardens :)  They will be set up to represent our loved ones who have passed. I know it's not our house yet but I keep hoping that one day it will be, then I won't have to dig anything up and move it :)

The family seem to be just about as ready as I am to get this operation over and done with.

I asked my sister, "how did you cope when the time got close?"  and she said on the night before she just cried, but up until then I think she must have just kept busy.  Although, having said that, it never leaves your mind.  It's always there.  Every time you look in the mirror you just know you'll never look the same.  When I go shopping with my mum, I look at beautiful clothes and then think to myself, "why buy, I don't know what size my body will be next week"  little things like that are always on my mind. 

But the biggest thing is still how will I feel about myself.

It's a strange feeling being a 'Previvor'.  Yes, we have a label.  It's a label for those who are high risk and choose to be pro-active in preventing cancer.  But it is still strange none the less.  I almost feel like I'm chickening out, or ripping off those who actually Have cancer.  I understand now what my sister meant when she said the same thing.  I read the horror stories and they are all so sad.  The struggle so many woman have gone through with these horrid diseases.  The pain and illness and, in a lot of cases, the loss of their fight.

I'm still debating with myself about doing the plaster cast of my torso.  I know if I don't do it I will regret missing the opportunity, but it's the actual act of sitting there, bare chested, in front of my family.  This is where our mental mistake of the breast being a 'sexual' item comes to play.  I have worked hard over the last 12 months re-training my thoughts about my breast and what they truly are.  They were a vessel to nourish my babies when they were born and nothing more.  And if I can keep that thought then I know I have nothing to worry about.

I am thinking of doing a cast now and another in 12 months just to see the difference.  I am planning on making March 27th my 'Re-Birthday'.    I wonder if that means I can look forward to another 21st? ;)

Well, off to the doctor now to see if we can knock this cold on the head quickly.  I want to get on with my life.

Toodles the noo.

Counting Days

So now I'm down to 13 days, 12 hours 50 minutes and so many seconds.  Not that anybody is counting.

I've been out and bought a nice pair of snuggly pj's and a new fluffy pair of slippers.  Hospitals can be so horribly cold, especially when you are bored to tears at night and can't sleep and you just want to walk around.

I'm spending more time online in the Pink Hope website at the moment now.  It makes me more happy about the decisions I have made with this BRCA1 thing.  I read horror stories about these poor ladies who weren't diagnosed in time or others that ignored the warnings and now it's too late.  Such a sad loss.  And reading the heartbreaking stories of the pain the family members are going through watching their beloved mother's hair fall out and knowing she has less than 6 months in your life!  I could not do that to my children, or my husband, or my family.

The hardest thing to get people to realise with this is that it's not a case of 'if' I get cancer, but a case of 'when' and I can't and won't live like that and I'm sure my family don't want me to either.  They would also have to sit there and wonder "is mum's scan going to show something this month".  I don't want that weight on their minds, not at their ages especially.

The reason I live and breathe every day.  I am so blessed to have a husband who wants to work hard to support his family and three of the most amazing human beings I will ever meet as my children.  They make me proud every single day with everything they do and with who they are.  They are the reason I chose not to fool around and take the risk that I 'might not' develop cancer, not when all the medical research showed that is was more a case of  "yes you will".

Where from here?

On March 27th I will be admitted to the Burnside Hospital here in Adelaide.  I will be having a double mastectomy and reconstruction.

This part has scared me so much.  I have always been big busted and it's always been 'who' I am.

Because of the way I grew up, with so much attention paid to my bust, it is hard not to think that by losing them I am losing myself.  I don't think like that willingly or even consciously, but I know it's the biggest part that is affecting me.

My sister is so inspirational.  She had her bust done about two or three years ago now and looks amazing!  But then she always looks amazing.  It was her that encouraged me to journal what I am going through because she wishes now that she had done this.

I try to make jokes about getting a boob job done and having a nice new 'rack', things like that,  but down inside I am screaming.  I am so scared and every day I feel like I'm getting more and more wrapped up in my fear of 'what if'  and how am I going to look.

I will be using the same surgeon and plastic surgeon that my sister had and they did a wonderful job with her.  That's a huge plus.

It's other things that worry me.  What if I'm ugly to my husband.  Will he still want to touch and hold me.  I know he is super supportive and the love of my life, but that doesn't stop the 'what if'.  How am I going to feel about myself.  I don't have a good self image now, what am I going to think of myself after the operation.

Because of my size I am going to have a large scar they have told me and this is a huge disappointment.  I thought they just cut around the areola, pull everything out and work through the hole.  But they can't do that with me because there will be too much lose skin and so they have to slice all that away as well.

Well, it's a journey I'm on and need to see through to the end.  One thing I am sure of, I will be glad to know that after all of this I only have the same risk as anybody else without a gene mutation of developing cancer, and that has got to be the silver lining.

How this began

In 2008 I received a letter addressed in a name I had not seen for many years and never thought I would see again.  It was a surname that I had no emotional ties to any more, except hatred, and it made me sick to see it.  

It was a letter from the Familial Cancer Unit of South Australia.   It informed me that a member of my family had been found to have an inherited tendency to develop cancer.  Given this was on the paternal side of the family, and a side I had chosen to wipe out of my life,  I tried to ignore the letter.  I sat on it for nearly 12 months.

It wasn't until my sister told me that she had gone and done the genetic testing and she was positive and then my brother had his test come back positive that I decided to have my test done.  A simple blood test.

On August 19th, 2009, I found I also carried the BRCA1 gene.  This meant that all three of us  in the one family carried a high risk of developing cancer.

My heart sunk even though I tried to make light of the situation.  I have three beautiful children, 2 girls and a boy, what does this mean for them? 

After spending time talking with the counsellor and reading what I could I decided that, given my age, and the fact that I did have three healthy children, I would opt for the hysterectomy first.  Ovarian cancer is so aggressive and hard to detect and there is no known cure yet so it seemed the easiest decision to make.

On May 24th, 2010, at the age of 44, I had a Prophylactic oophorectomy.   I opted to remove my ovaries, tubes, uterus and cervix.

That was nearly two years ago now and, while I'm happy I don't have to worry about those cancers, I still hate the fact that this choice was forced on me by a stupid tiny mutation inside me.

While I know that I may not have had any more children the choice was still there, I was even offering to carry for friends that could not carry babies, I loved being pregnant so much.  Often my husband and I would toy with the idea of another baby,  but that choice had now been taken away.

It did not make me popular with the staff at the hospital but I asked if I could bring my womb home with me.  To many that might not make sense and may make you cringe, but that tiny vessel carried and nurtured my beautiful children and helped bring them into this world.  It was a vital part of who I am as a woman and mother and I wanted it with me so that I could return it to Mother Earth when my husband and I finally find our own home.  Our children laugh at me all the time about my 'dim sim' (that is what it looks like).  It's sitting in a jar of alcohol hidden away safe and sound until the right time arrives and then I will do my own blessing and give thanks to the universe for giving me the joy of knowing motherhood and carrying three beautiful bairns to full term, and then I will return it to the great Mother.

Many don't understand me, sometimes I don't even understand me, but this is who I am and this is my journey.