Today I received two items in the post.
The first was the itemised account for my surgery from Dr Dave. I have to say that for a procedure that has essentially saved my life the cost is very reasonable
A quick Google search for some other things I could get for the same price turned up
a spring 2012 collection louis vuitton bag or a chin augmentation with fat injection.
What also blew me away was on the same cosmetic surgery website offering the chin procedure the quote for a breast reduction was $7,900!
Let me tell you I am not paying anywhere near that for the complete removal of my breasts.
I then took a closer look at the account and was a little surprised to see that there was a price discrepancy between my right and my left breast. In fact the left mastectomy was half the price of the right.
Now who would have thought that mastectomies come with a "buy one get the second one half price" offer.
( However I wouldn't recommend rushing out to take advantage of such an offer)
I'm not complaining but I must confess I am a little bemused. Add to the fact that the left one was the diseased one, I would have assumed that it may have been a bit more complicated.
Perhaps the left one was cheaper because the job was already half done 15 years ago.
I will enquire with Dr Dave when I see him and promise to enlighten you on the reasons.
The other package that arrived today was the My Care Kit from Breast Cancer Network Australia. It contains two gifts to help woman in their post surgery recovery.
The first is a DVD of a Pilate's program for breast cancer surgery recovery. There is a "6 degrees of separation connection" for me with this as I have worked with Fiona who is the instructor on the DVD.
In fact not long before I was diagnosed we had had discussions about the possibility of re-vamping it, because while it is a very good resource ( although I haven't watched it) in her words "it is as boring as bat shit".
The second item is a post mastectomy bra, courtesy of Berlei. It is skin coloured, looks like a maternity bra with clasps at the front and comes complete with two padded inserts.
I think I must have been in a drug haze when I agreed to let the Breast Care Coordinator order me one of these because there is absolutely no way I can ever see myself wearing it.
If you remember part of my reward for having a double mastectomy was the knowledge that I would be free from the constraints of a bra forever.
And wearing padded inserts would just bring back memories of being 12, riding around on my bike with tissues stuffed down my Tshirt pretending I had boobs. Although I would hope that Berlei does a better job than Kleenex.
I think I need to add a disclaimer here. I am in no way diminishing the resources that Breast Cancer Network Australia produce. For thousands of women they are invaluable in helping them cope with their breast cancer diagnosis and treatment. It's just that they are not for me.
So I will gladly pay Dr Dave and be forever grateful that despite the many things that are wrong with our health system, I have no other out of pocket expenses for my 5 day hospital experience and I will have a look at Fiona's DVD so that I can offer her some ideas on spicing it up.
But for now think I can do without the louis vuitton bag or a chin augmentation.
As always
P xx
With dinner having been delivered this afternoon ( thank you to my old basketball team mate) and housework off the to do list I find myself with time on my hands at the hour when I would have normally been rushing home from work and doing the second shift that many of you will be familiar with.
So instead of leaving the writing to late at night I am going to see if the creative juices work just as well in the early evening.
Each day brings with it a step back towards some sort of normality.
Now for those of you who have had any connection to cancer you may be familiar with the whole "new normal" concept which may or may not get explored within the pages of this blog and is not really what I am talking about here. I am simply referring to doing normal things.
Yesterday I got dressed in my "around the house clothes" but today I really got dressed cos I was going out for breakfast.
As I put on my long sleeve Tshirt, my cardigan, jeans and boots, I felt like I was trying out my new body in my old look.
And you know what? It actually felt OK. Of course a little bit of lippie always helps.
M picked me up and we went up the road for breakfast. It was a beautiful, crisp and sunny winter's morning and it felt good to be out. I am grateful that I have had my surgery in winter because you can rug up and feel less vulnerable. In fact I had my last breast surgery in winter as well. Must be something in the cold air that brings out the tumour in me ( ok so that was very lame but I couldn't resist)
We sat and ate and chatted and even managed to talk about people other than me. It was a great.
The first of a whole lot of firsts to come.
Well I didn't get this finished before dinner and here I am again at 8:45 sitting in bed (eating chocolates) writing.
And my mood has changed. Feeling a bit bummed. Being sore is draining - I have to think about everything I do and how to position my body so movements don't hurt. Bit over it actually.
I can hear everyone from here going " but it's only been a week, be patient, give yourself time" and yes I get all of that but it doesn't change the fact that I have 2 six inch surgical wounds across my chest that are really interfering with my ability to freely do almost every day to day activity and I can't ignore it.
Well I feel better after that little rant.
I actually had a great day. After breakfast, E turned up as scheduled. I am getting better at saying yes when asked if there is anything that needs to be done. So I got my sheets changed and two loads of washing done. Bliss.
I then had a visit from J who is not only an old friend but also a physiotherapist
For a few weeks before I went for the ultrasound that changed a few of my plans for July and August, I had been nursing a very sore shoulder but hadn't done anything about it. Of course when the ultrasound showed the tumour in my breast, I became convinced that the pain in my shoulder was in fact metastatic disease and that I was really in deep shit.
That was without doubt the scariest time I have had in this whole second diagnosis trip.
Well as I wrote in a previous blog, the bone scan that I subsequently had was all clear. So the pain in my shoulder was just poor posture, stress and general neglect of my body.
The shoulder has still been really painful and I needed to get it seen to. A phone call later and I now have a home visiting physio. Today was her second visit and it has made a difference. Although sitting in bed typing is slowly undoing all the benefit of today's treatment.
And in between all of this N had another exam today - Studies of Religion. How an atheist chose this subject is till a bit of a mystery but I think he enjoys the engagement and discussion ( well maybe more like arguments)
While my diagnosis and surgery has certainly messed things around for him, the upside is that I am at home for his exams. Nice to just be here when he gets home. Things have a way of working out - you just have to be open to seeing them from a different perspective.
The battery on my laptop is about to run out. Think that means it is time for me to turn off as well.
And I guess the creative juices prefer the reflection of the whole day that the late night pondering allows.
So as always
P xx
Hard to get my head around the fact that at about this time last week* Masterchef Series 3 was coming to an end and I was attached to a pethidine drip. Not sure which I am missing the most.
Oh and I had also just had a double mastectomy.
I still find it strange to say those words in relation to me. I think I struggle with the seriousness of the term and everyone elses response to it. It is such a radical thing to have had done and yet I find it hard to connect it to the fact that I had a biopsy that showed I had an invasive ductal carcinoma. I am not sure that that makes any sense, but I know I felt a similar disconnect 15 years ago. I will endeavour to try to get some clarity around this and when I do I promise to share it.
Anyway in honour of the first week I am proud to report that this morning I got out of my pyjamas. Amazing what you can achieve in a week - from a white hospital gown to trackie pants and a Bonds Sloppy Joe.
According to M's spreadsheet I was scheduled for 2 visitors today. (As well as the usual visit from her and a dinner drop from Y)
My gorgeous, no holds barred friend N was on the first visiting shift this morning. I shared that I was getting better at looking at my new chest and finding it a little less confronting. She then asked if she could have a look. (N was also brave enough to ask to feel the lump in my breast 15 years ago). I felt safe to do so, so I lifted my top. I don't know if she realised just how grateful I was for her spontaneous and I believe very honest response of "Wow that looks fantastic"
It made me focus on all that is good with the surgical result, and skip over the things that I am still learning to accept about it.
D arrive not long after that - she has requested that from now on I refer to her as the Whip Cracker. Forget about celebrating that fact that I got dressed, she would really like to have seen me at the shops, buying the ingredients to cook N(that is son N not friend N. May have to nickname him) and myself dinner tonight. Very glad it was freezing cold outside and she wanted to stay warm ( and that dinner got delivered).
I also had a call from the Breast Care Nurse today, just checking up on how I was doing. I told her that I was doing really well, all things considered. I told her that I wasn't seeing Dr Dave until the 13th of August to get the results back. We agreed that the waiting can be quite hard, although I am not thinking about that too much. I have no control over what the pathology results will be so it is wasted energy worrying about it. When I see the Dr Dave and get the results then I will engage with whatever I need to.
It is hard to believe that it is only a week ago since surgery.
I have to confess, that I have struggled with this post as I felt that I needed to write something more profound to mark the passing of the first week. But as my big brother wrote back to me today - after I sent him the same photo that is posted here - "life goes on...." and so it does. And I will continue to get used to my new body, continue to look for the things to be grateful for and continue to be me.
As always
P xx
* well it was that time when I started writing this.
Sitting in my own bed, with my new pyjamas on, drinking tea out of my own cup. Exhausted.
Coming home has brought with it a whole lot of conflicting emotions. As my friend J put it so well - I have come home to the same old same old yet I am not the same. In Hospital you are removed from reality and what has happened to you fits in that space - but once out, you start to process what has happened and it doesn't seem to fit quite the same.
The day started very early as usual and my anticipation anxiety around the drain removal was high. The Registrar and student Dr's came in for their last check. I appreciated her honesty when I questioned her about the drain removal (I had conducted quite a large survey about this - not always the best thing to do). She admitted that she had no personal experience but that she had had many reports to say that it was tolerable.
I gladly took the offer of the the two heavy duty pain killers and then laid back with earphones in to try and relax.
It was at this point I really regretted not being more diligent in my meditation practise but grateful for the power of analgesics.
So the moment arrived. In came the nurse educator with another nurse, Marcel, who I assumed was fairly new on the job. She asked if it was OK if she took out one drain and he took out the other. With no concerns for anyone's feelings but mine I refused and requested that she did both. A small exercise of power.
Now I don't know if the drugs masked the pain but it was far less traumatic than I anticipated.
First they take out the little stitch and then 5 deep breaths and on the fifth out it came. Now I will never know if Marcel would have done a good job but he certainly got full marks in the hand holding test.
I am not sure where this anxiety comes from because nearly everything that has been done to me has hurt less than expected - with the exception of the needles under the nipples and at least I will never ever have to experience that again.
So with drains out I felt released. Everything felt better. The shower was the next stop. An untethered wash is truly a glorious thing. With nothing to distract me, I did spend some time looking at my new chest. It is getting easier each time. There are bits of my upper body that I haven't really seen for a very long time - they were covered by 2 saggy boobs. Or maybe it is just that I can see them from a new perspective - looking down.
It doesn't scare me as much and Dr Dave is right - he has done a good job.
No such thing as a late checkout with hospital beds. Once I was marked "for discharge" my bed was quickly reallocated and I was moved - with all the stuff I had accumulated into a quiet room to await my ride home. As I zipped up my suitcase, I realised just what I state I must have been in the night before my surgery. I have no idea when I thought I would wear the 4 different outfits, the 8 pairs of undies and the 4 singlet tops that I packed. Denial - I was packing for a weekend away.
My gorgeous friend E and her mum arrived to take me home.
So after 5 days, one hell of a life altering experience and the very best the public health system has to offer ( with the exception of the boiled brussel sprouts) I was ready to leave the cocoon of my hospital ward and head home.
Getting into the car I had my first sense of being different. It was a weird feeling as I experienced my new body interact with the familiar.
E checked if the seat belt was OK and I replied we were fine as long as she didn't stop suddenly.
As we drove along I had a sense that something was missing and then of course I remembered - I had left my boobs at the hospital.
I can't explain it but I was really aware of the vulnerability of my body.
I arrived home to be greeted by N and a clean house. I think he was glad to have me home. I sense that he is unsure of how he should treat me and that he is concerned about any pain I may be in. ( he has just bought me in a cup of tea and my hot water bottle)
The whole transition to home was exhausting and E and her mum tucked me into bed and I slept.
I am glad to be home even if the emotions have been a surprise.
My challenge as always will be take my own advice and remember that even though there are only 2 very neat and clean wounds on my chest, the trauma to the area underneath has been enormous. My body is working continuously to heal itself.
Sleep and rest will be my best friends - along with all the amazing people who are rostered on to look after me this week.
The cup of tea is finished so I guess that means it is time for my first nights sleep with my new body in my old bed.
As always...
P xx
With a little bit of luck, tonight will be my last night in hospital.
Home tomorrow.
There has been much organising in preparation for my return. My bestie M loves a good project to manage and she has created a spreadsheet with a roster of people to visit, help me out and make sure I am not doing too much. She is the best project manager and friend a post double mastectomy girl can have.
I am really overwhelmed by the kindness and generosity of so many people who have stepped into my corner to make this whole thing a little less challenging.
Today my home was visited by Ethel, who spent 2 hours cleaning so that I would come home to a clean house. A call was put out for people to contribute to a gift for me and due to the amazing generosity of a large number of people I will now have Ethel for the next few months. I think this is the equivalent of getting a nappy service when you first get home from hospital with a newborn. I will thank everyone individually but if you happen to be reading this and you are one of my cleaning angels then from the bottom of my dirty bathroom I say thank you.
In addition N and I will also be well fed. I will miss the anticipation of lifting the lid of the hospital closh (no idea how to spell it but George used it on Masterchef all the time when he lifted the lid to reveal whatever was under it) to see what delights awaited me. I trust grey steamed brussel sprouts will not be part of any meal that is delivered.
The last day in hospital has been a quiet one. Dr Dave popped in again and is still really pleased with my progress. We discussed life, cancer and everything in between. I like his way of using analogies to explain things and his matter of fact way of telling it like it is. He also promised me that having my drains taken out tomorrow wont hurt.
Sure it won't hurt him, just hope it won't hurt me. Must confess to a little anticipation anxiety.
I have worried about N all day today. Just can't help myself. Ducatilad has been taking great care of him but I still feel that I should have been there. Has been tough - tougher than it needed to be. I will be glad to get home and just be able to be there for those incidental conversations that you have with an 18 year old son.
I was inspired today by the Olympics and managed to achieve a few personal bests.
First was in the solo shower event. I was able to perform the tricky manoeuvre of showering without really looking too closely at your body while balancing the drainage bottles on the sink.
And in the slow shuffle around the ward event I clocked two laps in under 5 mins. I actually had to do some extra laps as I struck a deal with the nurse. No blood thinning injection if I stretched my calves and got moving.
Both better than gold.
As I prepare myself for my last sleep in my bed with a view, I have had to say goodbye to Ducatilad. He is catching a plane home tomorrow at 7am and I couldn't hide him in the single hospital bed all night.
I don't need to make public declarations about what we share but in my letter to Dr Dave you may remember that I stated that I had complete faith in the resilience of those who loved me to deal with whatever we had to. This past 5 days has simply confirmed that.
He has taken care not only of me but also everyone else who comes as part of my package.
I feel treasured and know that to him I am still me in every single way.
That is a nice way to be.
P xx
Day 4 is coming to an end.
Again feeling tired. My body is working very hard to heal.
Each day brings its share of highs and lows, surprises and the odd absolutely bizarre moments.
I knew today would be ok when this morning I successfully put my nose stud back in my nose.
Now I know I have to learn to adjust without breasts but the thought that my nose may be naked again was a little too much to bear.
But with some lubricant, some antiseptic and sheer determination I managed to shove that diamond stud through my nose.
The other good omen was the shower and having my hair washed.
And finally, in the correct medical terminology - I had my bowels opened.
Never underestimate the power of a freshly washed body and a good crap.
(Just excuse me while I get jabbed, blood pressured and drugged. Back in a minute.
Ok back. The tablets are ok, the blood thinning injections are getting a bit tiresome.)
I think yesterday was also hard as I can't stop being a parent, and N had to have his major art work for his HSC in and I couldn't be there for him, and then today he has had to muddle through and be on his own studying for the start of his exams on Monday.
I knew he was doing it a bit tough when he told me he missed me today. Ah mother guilt.
Well S flew back to Brisbane today. Hard for both of us. It has been so good having her here but I never want what is happening to me to prevent her from fulfilling her dreams. And that is not just what I am dealing with now.
I think she gets that I am just giving her some superb material to draw on for future performances.
She has promised me that I will be her date at the Oscars - may have to get some good fake boobs for that outing.
The day was filled with visits, messages, and so much care and culinary delights. As such I have managed to avoid relying on the hospital's chefs for my sustenance.
Breakfast was homemade muesli, morning tea was fresh sourdough bread with thickly spread buttter and jam and lunch was pasta from last nights run to the pizza joint down the road.
In fact for breakfast tomorrow from the hospital I have ordered a bowl, a glass of milk and a spoon. Just as well I am making use of all the other services the NSW Public Health System has to offer.
I was going to move to the private hospital but beds were short and things are really very good here. The care from the staff has been great.
However tonight there was a moment when I thought a private room would have been a blessing.
There is very little privacy and conversations can be heard quite easily.
The woman in the bed opposite me (who has some developmental delay) was giving a very detailed medical history to some medical students. There was lots of stuff being carefully recounted over a long time.
But I think the fact that she had a very promiscuous boyfriend and he gave her chlamydia would definitely fall into the bizarre and too much information category.
Really regret not putting my headphones in earlier.
Dr Dave popped in again today - looking more like a uni student than a skilled breast surgeon. He had a peek at his handiwork and is pleased.
I have also gotten braver taking peeks and feeling my way around my new top half.
Not ready to do a full frontal view, but the fact that it looks neat and symmetrical is a start.
I trust that one day it will cross over and this will just be the new me. How long that takes I don't know.
Sleep is calling (or maybe that's the drugs). Either way, I am listening.
Good night,
P xx
What a birthday I had!
As those who know me well - conventional is not always my thing.
It was a big day for all sorts of reasons.
The biggest reason to celebrate is that I turned a year older.
I think I spent most of the day in a bit of a post operation high and amazement at how good I felt considering I had both my breasts removed the day before.
Dr Dave came to see me in the morning and despite my reluctance told me it was time to take off the strapping. I did have a mental picture of what I thought it would look like.
However I did not really want to spend time admiring his handiwork. I took a very brief peek and that was enough.
It was my birthday and I had other things to occupy myself.
These things included:
- Flowers from Ducatilad
- Organic carrot cupcake birthday cake from S
- Birthday card and flowers arrived from Mum
- Surprise bouquet from work
- Lovely cake from M and the cooking club delivered in person
- And my first wash (thank you to the lovely nurse who bravely washed my 'front bottom' for me.
By the end of my first day of being 49, I was cannula free (bye bye Pethadine drip), out of the very fashionable hospital gown and into my new pj's, and finished off with a celebratory dinner from the pizza place down the road.
The best present was a special visit, en-route home to Perth from my eldest brother who needed to come and check that his little sister was really ok.
As I lie here waiting for another delivery from said pizza place, it's been a bit of an emotional roller coaster of a day.
Bummed out, fed up, and feeling a bit flat (pun intended).
Processing the past 3 weeks is doing my head in. I'm not sure that I've done this cancer thing properly, again. It still feels very surreal, and even though I know that Cancer comes in many forms, it's hard to accept that a tiny Tumour has resulted in all of this.
I know I've set up a bit of an expectation that I'm funny and deal with most things with a level of humor, but as I reach the end of day 3, I think I've earned a break.
There are no words to express my gratitude for the love and support that has poured in from all places in many forms.
Fortunately, thanks to Dr Dave and my own vigilance, I now have many years to repay the favor.
Goodnight,
P x
