Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Month: August 2014

How important is faith?

faith 1 Faith is such an interesting word. It means “Confident belief in the truth, value, or trustworthiness of a person, idea, or thing. Or, a belief that does not rest on logical proof or material.

Now we all believe in something, whether it is ourselves, the medical system, our partners, friends or family and God or other spiritual belief systems. So you may believe;

“ I have cancer therefore I am going to die from it”.

” I will never get cancer ”

“ The Oncologist and medicine will cure me”

“ My family will always be there for me;” and many more varieties.

For me from the very beginning of being told I had cancer I felt no fear. Now this is a big thing, the idea of getting cancer before this has hands down been my single biggest fear.

However, sitting in front of the specialist and being told I had cancer I felt absolutely no fear. Sadness, loss, and confusion yes, but no fear! I am so amazed by this. However my faith always amazes me.

Now if you do not have a faith in God, please don’t leave me here. I am not a weirdo, but I do have a very close relationship with God aka Jesus. I only came to have this relationship around 10 years ago. I was not born into a Christian family and found this relationship whilst searching for what was missing for me, as an adult after my son was born.

Don’t worry, I am not preaching just filling in some background detail so you understand my perspective. I believe that God has a plan and purpose for my life (and for all of our lives). From the moment this diagnosis was thrust upon me I felt so strongly, “this will not take my life.” I honestly felt Protected by God. I don’t mean that He healed me instantly, but that by trusting Him, He will show me the way and that I am not on my own.

So for me, I put my faith in God, and I believe that I will be ok. Now for me this means that I still get treatment from Doctors and the medical system and that I support my body with complimentary medicine and healthy lifestyle. Through this journey I believe I will be ok.

So, answering my own question, faith is very important but just as important is knowing who or what you put your faith in. So no judgment either way, this journey is such a personal one, but I really feel compelled to share my journey with whoever is willing to read or listen. It is such a powerful question isn’t it, where, what and who do you put your faith in?

 

 

It’s all too draining

quotes1Saturday  7th  December

Marc and Monica go to South Australia for the weekend. I am home with Sam for the weekend, I thought no problem I won’t be doing much. On the first morning that they are away I am innocently in the bathroom having a wash.

All of a sudden I notice that there is a strange sound. As I am standing there I notice that the length of drain that was inside my chest has fallen onto the floor! I didn’t really feel anything. But I am looking at this thin king “now what do I do?”

I guess it wants to come out; I am not sure what to do? I call my sister who is a medical professional, she is always great for advice, she does not answer, Marc is in mid air, I can’t put it back in, I decide to call the nurse. They say they will be there asap, they come 2 hours later. I have put a dressing over the top as it is oozing, lovely!

I am skipping about the house as much as a one boobed sore woman can skip, trying not to panic. I am sure I look like an epileptic cockroach. Oh well Sam is sleeping in so there in no audience.

The nurse arrives, she is calm so then I begin to calm down too. The drain is out, the dressing is removed from my chest. I must say it is freaking me out, the scar is healing well but it looks like the 2 edges of skin are just resting together and can open any time. I begin to have these visions of the flesh parting, it’s horrible.

My wound is so sore, I thought they said when the drain comes out I will feel better I am just as sore if not sorer. It may be due to all of my jumping about previously in a panic.  With time, as the drain pain lessens, I can move a bit more freely without the bag attached to me.  I no longer look like a lost librarian with my shoulder bag.  I feel like I am beginning to make some progress.  Yippee!

 

 

My first post surgery check

bottled_up_emotions_by_photog_roadThursday 5th December

I am due for my post surgical review with my breast surgeon today. The warm caring man pre surgery seems to be MIA today and I am faced with a very curt business like man, who doesn’t seem to give a crap.

He looks at drain says “it’s ok but you need antibiotics”. He says “You are healing well and your pathology was inconclusive, there was some lymph node involvement but we have decided to take a conservative approach” – This does not sit well with me, so the cancer travelled?  How long do I wait?  All of these fear driven thoughts are invading my mind with such speed I can’t stop them.  He says “best case scenario, treatment will just be tablet, and they need to shut down my ovaries”.  Oh cool, that sounds hunky dory.  Awesome, what was I afraid of……

The completely frustrating thing is I know that this means.  This means Tamoxifen and my Mum was on this, each time she stopped taking it, on doctors orders her cancer would come back stronger than ever….   This drug frightens the crap out of me. I hated this drug for years.  Each time my Mum’s cancer came back with a vengeance. I also know that this means ”hello menopause” and this is scary for me too, I am 41, I’m not ready for this. But from his mouth, “just take a pill you’ll be fine.”  He does not even mention the menopause word, I think this is so wrong.

As a woman how am I meant to prepare and decide what is best for me when I am not being told all of the information?  The consequences of each treatment regime should be fully explained, and if not by him then he should be saying that this person will fully explain this for me. But nope, “just pop a pill darl you’ll be right!”

I ask some questions about my scars, he says “what are you worried about, this will all be ripped apart and redone when you have the reconstruction,” and then he adds “are you still persisting with the other breast removal?”  I try to remain calm but I want to rip his head off.

Persisting! You tell me the cancer has travelled, you tell me you have decided to take a conservative approach, then you have the hide to ask me if I am going to take up your precious time with the removal of my other breast!  Only after both my Mum and sister had cancer come back in the other breast????  I need to take some slow deep breathes so I don’t lose it.

I explain to him that I will be persisting with a double mastectomy as soon as I have been given the clearance to do so. I pray to myself that I will hopefully feel more heard by the oncologist in a few days.

I leave feeling frustrated, worried and angry. Why do these doctors minimize this experience, he is effectively removing cutting or chemically killing all of the things that make me a woman and I should be happy?????

As I leave I ask to pay for today as every appointment costs, she says “oh this consult was free, but here is the gap”, she gives me an invoice for $2000 and says “can you pay now?”  Sorry lovely I have not worked for a month or more and there is no money like this lying around in my account. I ask to make a direct deposit when I get home, she is not happy but agrees.

I am to see the oncologist on Monday the 9th, it is a woman, this gives me some relief, perhaps I will feel a little more understood. I get home and am so angry I don’t know what to do with myself, I can’t express it in words, I want to run but I am far too sore.  Aha, chocolate!

 

Adjustment, my new favourite word…..

hands-held-tight

Monday the 2nd December 2013

I am home, which is so nice but also weird. I am such a carer, I like to look after people, so being in the reversed role is not easy. I know it is a gift for others to allow them to care for me and that it is selfish to not share that role. So I am trying.

I remember when my Mum was in the final stages of her disease and the cancer had progressed to her bones and organs she needed 24 hour care. As a family we all rallied as much as we could and looked after her at home. Well, to be specific she moved in with one of my sisters and we did our best to support my sister. Obviously, most of the care fell on this one sister, until mum was in the final stages and we were all there together.

My Mum fought this care, she too was a carer and she did not allow us to care for her. This broke most of our hearts, as we just wanted so desperately to care for her as she has so lovingly cared for us growing up. She struggled and in many ways became frustrated, as she was less able to do things for herself.   This translated into so much tension for her as we tried desperately to love and look after her. Fighting about something like this was the last thing any of us needed.

So seeing this battle and feeling it on the receiving end, I do not want to be the same I want to allow others to care for me when I need it. It is not easy it does not come naturally to me at all. I learned from my Mum to care for others, not to receive.  She taught me well, actually she taught all of her girls well.

My Mum would not ever ask for help, she walked on a fractured hip for weeks before the Doctor would even Xray it for her. I remember him saying to her, “if it was broken there is no way you’d be walking!”   He did not know my Mum hey!

So I am adjusting to asking for help, even getting out of the chair is hard; my chest is just so sore. The unexpected pain is the drain site. The drain is through my chest and into the space where the tissue was removed from my breast. There is about 0.5 cm of tubing wound up and around my chest. There is a bag attached and each day a Community Nurse comes and measure the fluid makes sure there is no infection and drains the bag.

The drain it self is so sore at the site of the entry into my chest. The nurses refer to it as “drain pain.” Apparently at times the drain can push on or aggravate nerves, this causes a burning pain that is hard to describe. This is the worst part so far, it is so painful there are times where I am afraid to move because it is like a hot knife in my side. They say it will be in for at least 2 weeks – too much fun!

I am propped up in bed at night unable to sleep well; I am a stomach or side sleeper so this is not acceptable. When I do sleep it is due to pure exhaustion. Sleeping pills anyone? I have a few to play with, most of them get me to sleep but I wake up at inhumane hours and then watch night time TV, which is scary.

I have woken poor Marc so excited about steam mops and all kinds of gadgets, selling him all of the benefits that have been drummed into my subconscious through the wee hours. You are so vulnerable at this time of day! Marc is thinking, “hide the credit cards!!”

It’s quite worrying really, how many people fall prey to this unrelenting marketing when they are at their weakest. Perhaps I should start a group called “Home shoppers anonymous” “Hi My name is Kylie, I shop at 2am from my darkened bedroom whilst wearing a snuggy purchased through this very shopping method.”

Surely I am not alone, am I?

 

 

It’s all about dignity

dignity 2Saturday the 30th November 2013

I get to go home today! That’s quick huh? I thought so. I haven’t seen anyone yet about my prosthesis so I am waiting eagerly for them to come and fit me out.

No one comes and I eventually ask the nurse, “So when to I get my prosthesis? “ She looks at me like I am dumb and says, “You’re not, it’s Saturday they don’t work on Saturday!” Again I am dumbfounded, you could have pushed me over with a feather except I am in bed.

I am so shocked and upset I don’t even argue I just become so overwhelmed at the injustice of it. How dare they promise me a support then not get it to me because of a day of the week, I mean how hard is it?

I am about to be released into the world looking like a one boobed freak and I can’t do anything about it. There is something about a woman with one breast, it is extremely noticeable, I mean I am a D cup so it looks ridiculous, and that’s not even that big.

Marc arrived with his biggest warmest smile on ready to take me home when he sees my face. He asks “what is wrong?” and I explain, he is so supportive and says “no one will notice babe.” But that’s not the point, I don’t feel comfortable, that’s the point, this is about me and how I feel.  “I notice!”

I realise after a few tears that this needs to stop because nothing is going to change. So I get my brave on and decide to hold a flower arrangement strategically where my boob used to be. PERFECT!!

This is not the last of this though, I wonder how many other women have been sent home like me? I am sure I am not the only one, this has to stop, even if I have to change it myself. Surely it is not that hard to send a woman home with dignity?

So I walk down to the car, very gingerly, I am very sore and it is amazing how much the jarring motion of walking sends shock waves through my weirdly unbalanced chest.   Am also sent home with a drain in my chest. This should be in place for perhaps 2 weeks and then will be able to come out. It is to prevent a seroma or fluid build up at the surgical site.  So I have a bag that sits permanently on my shoulder holding the drain that comes form my chest.  I look like I spend a bit of time at the library.

So home sweet home here we come, minus my boob :(

 

Something’s Gotta Give

breaking-point

Friday 29th November

So it is the day after my mastectomy.  I am sore, my chest is hard to see because of the dressing but the place where my right breast should be is a concave weird place. You think that without a breast you will look like a man, but you look hollow, almost dug out. It is weird to look at myself, hollow one sided chest and black eye, what a sight!!

Marc brings Samuel into see me today, he has to drag him in as he is frightened of what he may see. He is surprised to see that I still look like his Mum. Bad hair, drawn face but still his Mum. They need to get off to their days of school and work  so they leave me to rest.

I decide to write to the GP who would not support me in my search for answers. I decide that something needs to be said. I wonder how many others have been stifled or not pursued treatment after such a negative response. I could have so easily not pursued things with another Doctor. After all what if I was just being a whiner?   Despite feeling so bad sometimes you lie to yourself and tell yourself it’s not worth pushing, after all it is probably nothing, you just need to toughen up princess.

Have you ever discounted yourself like that? I know I have for a very long time. I think it’s part of the process that we go through at times when life gets busy and we start to lose ourselves. Particularly, those of us who have many roles. Here I am Kylie the Mum, Wife, Step mum, Business owner x 2, Sister, Friend, Colleague. I know most women who have had children can begin to lose their identity. I think its because we just get used to putting everyone else’s needs before our own. I mean in our house even the pets get fed before I do.

But this will need to change, I am realising that whilst there is a big part of this situation for me that is genetic, there is also a big part that relates to lifestyle I am sure. I have been putting myself last for a long time, not taking time for my self or care of myself. The funny thing is that no one asked me, or even expected me to, I just did it. Like being a good Mum and Wife means you come last.  Where does that message come from?

Again, my kids or Husband never said this to me, I just allowed it to happen. I passively stood by and decided that what I wanted or needed didn’t matter. How did I end up here?

It made me think back to earlier this year when I was asked by a Counsellor “what makes you happy?” When she asked me I sat there dumb founded thinking I have no idea, I burst into tears because it hit me just how sad that was. The worse thing is I am not the only loser here, so is anyone close to me. They don’t get the best of me either, just the chewed up spat out version.

So laying in a hospital bed, I have much time to think about my future and to think about how differently I am going to live my life. I only get one crack, I have much to offer and much more I wish to achieve in this short adventure on planet earth.

I decide I want to do life laughing, running, having a ball rather than depressed, run down and dragging my feet. So things will change, I will need to prioritise both my physical and emotional health. In doing this I will be able to be there for those special people in my world.

How this change is going to happen is another story and I am sure will be a long and evolving process.

 

 

 

It’s cut off day

fearless quote Thursday 28th November 2013

Surgery day has arrived very quickly! We arrive at St George Private Hospital by 6am. We get all booked in and fill in all the paperwork. I have been nil by mouth since midnight.

The first “procedure” of the day is to have radioactive isotope injected at 9am. This is to see if any cancer has travelled out of the breast to the lymph nodes. It is a fairly new procedure so I am glad I get access to this new technology so to speak.

We meet another lovely lady and her family in the waiting room. She is there also to have the same procedure for a lumpectomy today. You can just see the fear on her face. Poor love. We make small talk and try to act like everything is going to be ok.

My lovely man Marc is with me every step of the way. Any one who knows us knows we cope with life through humour and lots of it. The poor technician that takes some images of me is very straight laced. Marc is trying to make him laugh and he is almost tripping over himself just to get out of the room more quickly. I am laughing so hard for a moment I forget what I am at the hospital for.

The injection of the radioactive substance really hurts but it only lasts a little while. This will trace the pathway from the breast to the lymph nodes so they can be biopsied and tested for cancer. I am then escorted back to the preparation area for surgery. I wear what I think is my most comfy mastectomy undies only to be told they are made of the wrong fabric and I need to wear these ridiculous paper ones. So uncomfortable, honestly there is no end to the embarrassment you experience.

The Breast care nurse comes by, she is lovely and makes me feel really at ease. She explains that I will receive some support regarding a prosthesis after the surgery and also receive support at home post surgery due to the drains I will have in place.  She also tells me I will get a soft prosthesis and a bra to wear after surgery.

The anaesthetist comes by and I feel like he has stepped of the set of mad men, he looks like he is right out of the 1960’s. A lovely man, funny, happy to chat, I am glad for the distraction to be honest. Its getting near 12 and I still haven’t gone in for surgery. I am becoming really thirsty and agitated, lets get the ball rolling people!!!

I finally go in for the surgery at 1pm. I get the smooth talking South American orderly who is as smooth as silk. He is wheeling me along and says in his smooth accent “So what is Santa Claus going to get you for Christmas?” Without even thinking is say “Breast cancer how about you?” Poor guy, does not have an answer for that and I am far too focused on the next part of my day to apologise.  I didn’t mean to sound nasty that is my bald sense of humour at times.

I am aware that I am awake and back in room by 5pm, I feel sore but ok.  I have a dressing on my right side chest and a drain coming from the right chest wall as well as a PCA for pain. At the push of a button I can get pain relief. Marc is there when I wake up which is nice. He has to leave at dinnertime so that the kids get fed, and I settle in for a quiet evening.

By 10pm I have the nurses encouraging me to get out of bed and use the toilet. This is not easy, it is very painful to move and I am not able to go. We realise pretty soon after a few attempts that it is more about performance anxiety than a surgical complication. PHEW!! I sneak to the loo by myself and am able to go, then tell the nurse that all is well.

Then at about 1030 the anaesthetist comes and says “hello.” What an unexpected and lovely surprise. After some routine small talk, he asks “so do you remember anything during the procedure?” I answer, “No should I?” He responds with a weird, “Nooo”.   He then vanishes into the night.

After he has left I look in the mirror and notice that I have a black eye!!! What on earth happened in that operating room?  As I lay there, laughing to myself,  pondering the endless possibilities I drift off into a broken sleep, first day after my mastectomy, I have survived, in fact I did quite well, I wonder what tomorrow will bring?

Decisions to be made

tough decisionMonday the 25th November 2013

 

We see the Doctor again, he says “the second lump in the right is cancer, the left is benign”. He then says “You need a mastectomy, and I can do it on Friday”.

In my head I am saying to him, as if you are touching me dude! You can’t even remember my name how do I know you will remove the correct breast! I actually say, “I want a second opinion and will see another breast surgeon”. He mumbles uncomfortably, “yes sure you can do that, it is your right, I am sure he will say the same things as I just have.”

I call the Doctor who was recommended to me by the radiologist. He is back from holidays this very day; they agree to squeeze me in this Wednesday as in the day after tomorrow! – Thank you God. At least there is minimal wait time this time around. I don’t realise until much later how unusual this was. This doctor has a waiting list of more than 3 weeks!!

We begin making contact with everyone we need to tell. This is so taxing. Repeating the same story, dealing with the shock and emotion of the other person, making sure they are ok with your cancer diagnosis, it takes a real toll.

We get practical and do some group text messages, which really hit home for some of our friends. They respond with shock, calling to say “how can you tell us by text?” At the time this was really hard however reflecting back I am sure this was just their shock speaking. Practically we seriously couldn’t tell everyone we needed or wanted to tell.

We know more now so it is decided that we need to tell the kids. For those who don’t know we have a blended family. Marc has two amazing kids Josh, 20 and Monica now 18. I have the wonderful Samuel who is 13. Moni and Sam live with us in Sydney, Joshua lives in Adelaide closer to his Mum. Marc tells his kids and we tell Samuel. I decided to be really open as I remember what it was like for me as a kid not knowing the full story with my Mums health crisis. When you don’t know you fill in the blanks and that is a scary place.

I used the word cancer, and encouraged him to ask questions. His first question was, “will you lose your hair?” I said “maybe, maybe not, that still needs to be determined, but I am having surgery to remove one breast first.” Samuel is such a deep thinker, he took his time and then said “well Mum, if you lose your hair, I will get you a really cool beanie.”  What a sweet heart!

I watched him like a hawk to ensure he was ok. I encouraged him to ask me anything he wanted too promising that no question was silly or too hard. I also shared with him that I really believed that I would be ok, that I felt that God would look after me. I didn’t talk much with Moni about what was going on, she seemed to internalize it and to be honest at the time this happened we had not been in a great place for a long time.

On Wednesday 27th November we see the Doctor for a second opinion. He agrees mastectomy is the best course of action and can do it next week. I say “the other Doctor said he can do it Friday” he says, “let me check, oh I can do it tomorrow.”

Holy crap that was quick! He explains the process and says that he will also do a sentinel node biopsy to determine if the cancer has spread to the lymph nodes because that will change treatment options. I explain that based on my family history I want both breasts removed and now is preferable.

He listened but said “Look my first priority is to ensure we get the cancer under control, until we get in and do the pathology we don’t know what we are dealing with. We need to control cancer first, then discuss the other mastectomy, but I wouldn’t necessarily agree that that is your best course of action”.

I appreciated his honesty and candor and agreed that first priority was the cancer. I also needed to know that he would listen to my perspective, and I felt he would. So we agreed to go ahead and left with all of the paperwork.

We leave and call HCF, do you know until this point we didn’t even know if we were covered. Even with cover, upfront payment was $2000 just for the surgeon. I am nervously on the phone with a consultant and yes we are covered – thank God!

Marc and I then book in for surgery tomorrow and then go and get some new PJ’s for hospital. I’m going to need stretchy lose tops that allow good access to my chest.

I decide to make tonight a celebration so we have a “bye-bye booby” cake that night. I make a cake to represent my right breast. I want tonight to be a celebration not a sad event. So we crack open the champers, we laugh at my ridiculous rendition of a boob cake, it really doesn’t look like a boob. Any caterers or creative cake makers out there, this may be an opportunity for you?

What a day! What a week, and tomorrow the real fun begins.

It’s C Day

faith quote

Tues the 19th November 2013

It’s 9 am and we go to the breast surgeon, my preferred Doctors colleague. My first choice for a breast surgeon is on holidays and we can only see his colleague.  We arrive eager to get the results only to be told it’s not today its tomorrow!  I want to cry.  I really don’t know how that happened!  I go home and wait.  I cannot describe the frustration and helplessness that I feel. The time passes so slowly, its almost like I feel like I need to make every decision but you also can’t make any because I don’t know what the outcome is.  Again a very unproductive and emotionally painful day.

The following day Wednesday, we go to our appointment, a young Chinese doctor sees us.  The moment i see him i feel like the answer is not going to be good.  He looks at me says, “ it’s cancer, it is what it is.”

He then turns from us and with his back to us mumbles, “take a moment if you need too.”  I feel like offering him some training in how to deliver life changing news!  Honestly!    Marc grabs my hand but I am strangely calm.

One some level I am shocked but not hugely because I feel like I have known since the radiologist went quiet on Saturday. He says to Marc and I, “Hey we need to biopsy the other lump Kerry”. (My name is Kylie) and I say “What about the third lump?” – he says “hang on let me read the report, oh yeah lets get both done now.”

Well I’m sure you can imagine what has just happened to my trust level in this young man, zero!!!! First he gets my name wrong, then he hasn’t read the report and could have let a third biopsy be forgotten and he wants to touch my boob!  I don’t think so….

He also says, “I will do a lumpectomy next week.”   I say “I want a mastectomy” and he says “I don’t think we need to go overboard!”  I am spinning thinking I have two time bombs on my chest here, I saw my Mum die over a very long slow and painful process, my sister is going through it and you say don’t over react!!!!

I go back to my friends at radiology, my friend cranky pants the angry receptionist greets me with a hug this time and I get the other biopsies done.  Again the staff at radiology are so lovely and gentle, they treat you with such dignity and care it makes a horrible process so much more bearable.  I am to see the breast surgeon who doesn’t know me from Adam again on Monday the 25th to get pathology results and confirm the plan.

Marc takes me to out favourite local restaurant at Brighton by the water for some lunch.  Ia m not hungry I have such a knot in my stomach.  We begin to make those first phone calls to family and close friends, the people we are going to need the most support from.   I am becoming quite emotional and am trying to hold it together.  The poor waitress is trying to serve us but realised something quite big is going on so she circles too afraid to approach.

What a weird day, I am calling people telling them that I have cancer, it is surreal.  They all read differently, some are strong for me, others I need to be strong for them.  Some have very strange reactions and in their shock say weird things like ” well at least you’ll lose weight with chemo,”  I breathe deeply and just think, “It is their shock speaking, they don’t mean it, who would say that seriously!”

We eat, we talk, both of us are keen to seek a second opinion, but are also keen to get the results back form the other biopsies.  The weight on us is tremendous.  We are both drowning in the “what ifs.”

So from Wednesday to the following Monday we wait, we know I have cancer but we don’t know anything else. As you can probably imagine this is a weird time, we don’t sleep much, we talk a lot, we contemplate things more, differently, I am trying to wrap my head around what I need to do practically with my work and life.

I feel like my works has been placed on hold but also on fast forward.  I start to think about all the things I haven’t done but want to and need to do.  I think “oh Geeez, I don’t have a will in place, I have not made it clear about what would happen to Sam in the event of my death.”  Big questions to contemplate.  Then I also have this beautiful confirmation that I will be ok, I will get through this.

To say I am confused, bewildered and overwhelmed is the understatement of the century.